Here's an allergy update to keep you all in the loop...
Isla had an allergy appointment on Wednesday (it was mid-nap time so she skipped her nap, threw a huge fit before, a huge fit after and was an sparkling angel in the office.)
Here's the update...
Food Allergies -
- Tree Nuts (all nuts except peanuts) - She has an IgE allergy to Pecans & Walnuts. It is impossible to know how severe this allergy is without exposure, but the allergist said that her reaction to pecan was very concerning for a 1st exposure, so she needs to avoid all treenuts and strictly avoid pecans & walnuts. We may be able to give her almonds if we can find cross-contamination free almonds, since she passed them at home. I just renewed her MedicAlert subscription and she picked out her new bracelet - purple of course!
- Avocado - She is doing GREAT! We are still strictly avoiding in hopes that she has zero reactions, but for now her reaction is limited to a topical reaction & is not life threatening.
Other Allergies -
- Bee Stings - We are keeping an eye on bee stings, since she had some swelling of her foot that resolved with benadryl & cold soaking after stepping on a dead bee. This is pretty much a non-issue for now, since she carries an epi & benadryl, but at least now we have a formal protocol.
- Latex - Due to the cross-reactivity of latex & avocados, we are limiting Isla's latex exposure to reduce her risk of developing a latex allergy. Latex is one of those allergies that gets worse with exposure, so we are doing simple things - no latex gloves or bandaids, but not worrying about occasional exposure (e.g. balloons are just fine!)
- Seasonal / Environmental Allergies - We still aren't sure what she is reacting too, although the best guess is dustmites, since controling them seems to make a big difference. She is on nasonex only and it seems to do the trick along with environmental controls. The dustmite control also seems to help her asthma, so it is win-win, and I love that she isn't taking daily zyrtec.
- The Flu Vaccine - We will not be giving Isla the flu vaccine this year. This was a tough decision for us, but since she cannot communicate how she is feeling when given incremental doses and anaphylaxis can be deadly, even with an epipen, we are not willing to take the risk. She is at a higher risk for severe reactions because of her history of anaphylaxis, history of anaphylaxis involving a GI reaction, and history of asthma. Our decision is in line with the new CDC recommendations for the flu vaccine and the recommendations of the flu vaccine manufacturers.
Here's the CDC recommendations:
"A previous severe allergic reaction to influenza vaccine, regardless of the component suspected to be responsible for the reaction, is a contraindication to receipt of influenza vaccine."
Her allergist and GI doc both support us 100% and I haven't told the pedi yet. (He's gung-ho on vaccines, but I think he'll respect the allergist's & the CDC's recommendation.) We are going to be extremely careful because we do not want Isaac or Isla to be exposed to the flu, so be prepared to be grilled on your vaccination history. :-) It takes two weeks for the flu vaccine to create immunity, so the sooner you get your shots the better. We will be getting ours asap. :-)
GERD - I'm not sure if I posted about our GI appointment, but the GI did not feel that GERD could effect mild intermittent asthma, like Isla's. (We were discussing the pros & cons of a medication wean.) The allergist (for those of you not on the allergy circuit, an allergist deals with asthma and eczema, as they are part of atopic diseases), gently and politely disagreed (he said, "Well, some experts beleive that it can have affect on both severe and mild allergies, and I think it would be beneficial to keep her GERD under control.") Again, my preg-heimers is making me draw a blank on whether I posted this, but we tried a prevacid wean after her GI appointment. She did great for a while, but the weekend before we were going to step down after the initial two weeks at a lower dose, she started having breakthrough symptoms that were not controlled with antacids. On a good note, her symptoms are not at all as bad as they were last fall (although she was on no medication last fall), so I think it is a great sign that things are improving.
Showing posts with label The A Word. Show all posts
Showing posts with label The A Word. Show all posts
Friday, September 2, 2011
Wednesday, July 20, 2011
Awesome Start
At our last allergy appointment I got the green light to trial treenuts at home.
I was nervous but excited to further ease up on our nut free existence.
Then Isla had her little surgery, then we found out that she still reacts to avocado,* then we went away for a month to help my sister get married, then she got stung by a bee and her allergist is not thrilled with her first reaction,** then she started getting raw skin from latex bandaids and the allergist said no more latex,*** then we did potty training, and then we had her GI appointment.****
All of those things were my excuses for not doing tree nuts, but in reality I was just scared. In the day time I think I've got the allergy thing down, but at night time I'm still occasionally having some pretty fantastic nightmares. The last involved me giving her almonds at a fancy restaurant & she immediately passed out. I was carrying her around while snazzily dressed diners looked worried but immobile and eventually laid her down and tried to give her the epi, but ended up missing and stabbing myself in the (very pregnant) stomach instead. I pulled out the pen and gave it to her (luckily something you can do in the dream world) but then amniotic fluid started squirting out of the puncture wound in my stomach. I think at that point I told myself to wake up.
(Psychoanalysts, have a field day with that!)
Well, potty training, while still stressful, and not 100% accident free, is going well, so I decided to bite the bullet and give her almonds today. (Notice I am conquering my fears and giving her the nut from my nightmare!) She had absolutely zero reaction! Yey! That bodes well for all other tree nuts. We'll be trying more nuts soon.
* Isla still gets a contact reaction and diaper rash from avocado, but it is unlikely that it will ever get worse and hopefully with avoidance she will outgrow it.
** Isla stepped on a bee and despite giving her benadryl & soaking, her foot swelled. Because it was her 1st exposure the allergist feels like it should have been a much smaller reaction.
*** Latex bandaids have been causing a red raw rash where the bandaid was which scabs up after-wards. Latex and avocado are related, so this is common. Apparently repeated exposure can make it worse, so we are supposed to minimize all latex exposure. Luckily it is unlikely that it will ever progress to anaphylaxis, since latex is so easy to avoid now and her reaction is only topical.
**** The appointment was great! Isla's diarrhea is mostly resolved so unless it comes back she won't need another endoscopy. We are going to try to wean her off her GERD medication over the next 6 weeks. This is her last daily medication other than vitamins and I can't wait to be done!
I was nervous but excited to further ease up on our nut free existence.
Then Isla had her little surgery, then we found out that she still reacts to avocado,* then we went away for a month to help my sister get married, then she got stung by a bee and her allergist is not thrilled with her first reaction,** then she started getting raw skin from latex bandaids and the allergist said no more latex,*** then we did potty training, and then we had her GI appointment.****
All of those things were my excuses for not doing tree nuts, but in reality I was just scared. In the day time I think I've got the allergy thing down, but at night time I'm still occasionally having some pretty fantastic nightmares. The last involved me giving her almonds at a fancy restaurant & she immediately passed out. I was carrying her around while snazzily dressed diners looked worried but immobile and eventually laid her down and tried to give her the epi, but ended up missing and stabbing myself in the (very pregnant) stomach instead. I pulled out the pen and gave it to her (luckily something you can do in the dream world) but then amniotic fluid started squirting out of the puncture wound in my stomach. I think at that point I told myself to wake up.
(Psychoanalysts, have a field day with that!)
Well, potty training, while still stressful, and not 100% accident free, is going well, so I decided to bite the bullet and give her almonds today. (Notice I am conquering my fears and giving her the nut from my nightmare!) She had absolutely zero reaction! Yey! That bodes well for all other tree nuts. We'll be trying more nuts soon.
* Isla still gets a contact reaction and diaper rash from avocado, but it is unlikely that it will ever get worse and hopefully with avoidance she will outgrow it.
** Isla stepped on a bee and despite giving her benadryl & soaking, her foot swelled. Because it was her 1st exposure the allergist feels like it should have been a much smaller reaction.
*** Latex bandaids have been causing a red raw rash where the bandaid was which scabs up after-wards. Latex and avocado are related, so this is common. Apparently repeated exposure can make it worse, so we are supposed to minimize all latex exposure. Luckily it is unlikely that it will ever progress to anaphylaxis, since latex is so easy to avoid now and her reaction is only topical.
**** The appointment was great! Isla's diarrhea is mostly resolved so unless it comes back she won't need another endoscopy. We are going to try to wean her off her GERD medication over the next 6 weeks. This is her last daily medication other than vitamins and I can't wait to be done!
Thursday, March 24, 2011
Egg-Cellent!!!
Isla ate & passed scrambled eggs today!!!
No more egg allergy!
Skin prick testing & doing the oral challenge for soy was the biggest blessing. While I was totally scared when the GI Doc asked us to challenge soy, it led to testing and an oral challenge a year earlier than expected.
The success of that challenge prompted her allergist to re-test her other food allergens. She tested negative for all of them! We introduced eggs successfully today & in May she will have an oral challenge for peanuts.
Our original plan was to wait until 2012 to do any oral challenges, so this is really exciting! We have been celebrating Isla's new found dietary freedom by eating at more restaraunts & introducing new foods into her diet!
No more egg allergy!
Skin prick testing & doing the oral challenge for soy was the biggest blessing. While I was totally scared when the GI Doc asked us to challenge soy, it led to testing and an oral challenge a year earlier than expected.
The success of that challenge prompted her allergist to re-test her other food allergens. She tested negative for all of them! We introduced eggs successfully today & in May she will have an oral challenge for peanuts.
Our original plan was to wait until 2012 to do any oral challenges, so this is really exciting! We have been celebrating Isla's new found dietary freedom by eating at more restaraunts & introducing new foods into her diet!
Saturday, January 29, 2011
Everyday AWESOME Moments!
Have you ever noticed the "Food Culture" that is at the center of American life? Birthday cakes, Christmas cookies, Easter Eggs, Halloween candy...those are the obvious ones, but each family has its own traditions as well - special meals and treats for special celebrations.
...and it goes beyond the actual food itself - certain foods are emblematic of holidays or events and in addition to eating them, we purchase and display symbolic representations of the real food - candy corn, pumpkin pie, candy canes, gingerbread houses & cookies, peeps...people wear shirts and jewelry with pictures of these foods, send cards shaped like these foods, decorate their homes with fake versions of these foods, etc, etc, etc.
One of the recommendations that all the food allergy parenting books make is to try to minimize the role of food in your family traditions and events. That is all fine and dandy, but...
it Totally Sucks!!!
I have literally grieved over not being able to give Isla candy hearts for valentines day, or not get to make the same special cookies my mom made for me when I was little...don't even get me started on holiday baking! It was maddening to find that the Halloween costume I'd been planning for her since before she was conceived was a costume of something she couldn't eat. I had mixed feelings, but still bought and put her in the adorable gingerbread cookie PJ's for Christmas (then my mom and I made safe gingerbread cookies, so that worked out just fine.)
The other recommendation the books make is to try to create safe versions of favorite traditional foods. When children are little, I think this is more for the parents than for the child. While Isla is just getting old enough to notice that she is eating different food (& besides, she has been eating different foods her entire life, so that is her 'normal.'), I have the compulsion to cook entire safe Thanksgiving dinners for her, and make foods that match what everyone else is eating at birthday parties and family gatherings.
Thanks to our favorite new product - Daiya Cheese - Isla has been able to eat authentic pizza, mac 'n cheese, and quesadillas. She loves them all and it has been really exciting to introduce these new kid classic foods to her.
I've also been perfecting my allergy free baking. By baking & freezing cupcakes in advance and then grilling my friends about what the cake / cupcakes to be served will look like, I've been able to provide her with cupcakes that fit right in. Here she is enjoying a cupcake at her sweet buddy, Noah's, birthday party.
Thank you friends for sharing your menus in advance. It has made party planning much easier and party attending much more fun for Isla. We made sliders with egg free buns for Ethan's party and Pizza for Noah's party. Yum!
Our other favorite recent discovery is In & Out. We found out in October that In & Out Burger will tailor their "allergy burger" to your (or your child's) allergies.
For Isla, that means a hamburger cooked on a separate clean grill with separate utensils by a freshly washed and gloved employee (See, they are awesome!!!), the burger is then served protein style (no bun), with lettuce, tomatoes, onion, catchup and mustard (no special sauce). The fries are cooked in cottonseed oil and their facility is nut free. They are extremely conscientious and package all the allergy-safe food in a separate bag.
We've taken Isla 4 times and she absolutely LOVES it. The best part is that it is someplace we can safely eat on the road. Here's Isla, on her way to Yuma, enjoying her lunch.
...and it goes beyond the actual food itself - certain foods are emblematic of holidays or events and in addition to eating them, we purchase and display symbolic representations of the real food - candy corn, pumpkin pie, candy canes, gingerbread houses & cookies, peeps...people wear shirts and jewelry with pictures of these foods, send cards shaped like these foods, decorate their homes with fake versions of these foods, etc, etc, etc.
One of the recommendations that all the food allergy parenting books make is to try to minimize the role of food in your family traditions and events. That is all fine and dandy, but...
it Totally Sucks!!!
I have literally grieved over not being able to give Isla candy hearts for valentines day, or not get to make the same special cookies my mom made for me when I was little...don't even get me started on holiday baking! It was maddening to find that the Halloween costume I'd been planning for her since before she was conceived was a costume of something she couldn't eat. I had mixed feelings, but still bought and put her in the adorable gingerbread cookie PJ's for Christmas (then my mom and I made safe gingerbread cookies, so that worked out just fine.)
The other recommendation the books make is to try to create safe versions of favorite traditional foods. When children are little, I think this is more for the parents than for the child. While Isla is just getting old enough to notice that she is eating different food (& besides, she has been eating different foods her entire life, so that is her 'normal.'), I have the compulsion to cook entire safe Thanksgiving dinners for her, and make foods that match what everyone else is eating at birthday parties and family gatherings.
Thanks to our favorite new product - Daiya Cheese - Isla has been able to eat authentic pizza, mac 'n cheese, and quesadillas. She loves them all and it has been really exciting to introduce these new kid classic foods to her.
I've also been perfecting my allergy free baking. By baking & freezing cupcakes in advance and then grilling my friends about what the cake / cupcakes to be served will look like, I've been able to provide her with cupcakes that fit right in. Here she is enjoying a cupcake at her sweet buddy, Noah's, birthday party.
Thank you friends for sharing your menus in advance. It has made party planning much easier and party attending much more fun for Isla. We made sliders with egg free buns for Ethan's party and Pizza for Noah's party. Yum!
Our other favorite recent discovery is In & Out. We found out in October that In & Out Burger will tailor their "allergy burger" to your (or your child's) allergies. For Isla, that means a hamburger cooked on a separate clean grill with separate utensils by a freshly washed and gloved employee (See, they are awesome!!!), the burger is then served protein style (no bun), with lettuce, tomatoes, onion, catchup and mustard (no special sauce). The fries are cooked in cottonseed oil and their facility is nut free. They are extremely conscientious and package all the allergy-safe food in a separate bag.
We've taken Isla 4 times and she absolutely LOVES it. The best part is that it is someplace we can safely eat on the road. Here's Isla, on her way to Yuma, enjoying her lunch.
Wednesday, December 8, 2010
November Wrap Up
Here's Isla in beautiful sweater that my Grandma Helen knitted for her. It is too cute for words and she really enjoys her "hoodie sweater."
Isla looking stylish! She's starting to get strong opinions about fashion - she wants to wear her party shoes despite the fact that they cause blisters and she also lovers her "polka-dottie shoes" from Emi.
Isla really loves holidays. I bought an extra copy of my favorite children books about holidays - Over & Over, and rotate the holiday pictures each month in a frame in her room. Isla loves looking at the pictures and knows all the holidays from reading the book (over and over and over!).
Here's Isla with a seasonally appropriate bristle block turkey.
We had a HUGE amazing Thanksgiving with Isla's Aunt Wendy's family (around 40 people!). Everything was delicious and despite not knowing everyone, we had a ton of fun. Isla loves Thanksgiving food. All my work to prepare a safe dinner for her really paid off - we were able to eat delicious Thanksgiving leftovers for a week and a half after Turkey day and I recently thawed some frozen turkey and turkey broth and I'm making turkey soup tomorrow.
I made all the pies for Thanksgiving. Here's my supplies - just getting started.
Here are all the pies!
Isla really likes arranging little places to play, eat or read. Here she is having a box picnic.
Isla also really enjoys "coloringing" on anything and everything. She also enjoys "arting."
She has put all her art supplies from Aunt Margo to good use!
Poor Isla has had a lot of medical appointments in the past month. She recently had another skin prick test to make sure gelatin, a component of vaccines, was not an allergen - it isn't. She also saw her pedi b/c her GERD is not resolved and she is still having lower GI issues, even some blood in her stool, despite eliminating egg. Her pedi ordered blood tests and referred her to a pediatric GI - we are going Feb 1st, which is actually pretty speedy in specialist land.
Despite the pokes and prods, Isla is a champ. She seems to process it all pretty well - yesterday she gave her owl a series of skin prick tests and then fed him safe foods. On that note she LOVES cooking right now too. (Look, now the box is an oven!)
I'm really glad b/c she is getting a kitchen, food & cooking supplies for Christmas. I can't wait to see her open it.
We've enjoyed the rainy weather too!
It may be cliche, but experiencing things with a child really allows you to experience them again for the first time. Here we are on an outing to the canyon to look at the little creek.
Floating sticks down the creek...
Somethings don't float!
Isla looking stylish! She's starting to get strong opinions about fashion - she wants to wear her party shoes despite the fact that they cause blisters and she also lovers her "polka-dottie shoes" from Emi.
Isla really loves holidays. I bought an extra copy of my favorite children books about holidays - Over & Over, and rotate the holiday pictures each month in a frame in her room. Isla loves looking at the pictures and knows all the holidays from reading the book (over and over and over!).Here's Isla with a seasonally appropriate bristle block turkey.
We had a HUGE amazing Thanksgiving with Isla's Aunt Wendy's family (around 40 people!). Everything was delicious and despite not knowing everyone, we had a ton of fun. Isla loves Thanksgiving food. All my work to prepare a safe dinner for her really paid off - we were able to eat delicious Thanksgiving leftovers for a week and a half after Turkey day and I recently thawed some frozen turkey and turkey broth and I'm making turkey soup tomorrow.I made all the pies for Thanksgiving. Here's my supplies - just getting started.
Here are all the pies!
Isla really likes arranging little places to play, eat or read. Here she is having a box picnic.
Isla also really enjoys "coloringing" on anything and everything. She also enjoys "arting."
She has put all her art supplies from Aunt Margo to good use!
Poor Isla has had a lot of medical appointments in the past month. She recently had another skin prick test to make sure gelatin, a component of vaccines, was not an allergen - it isn't. She also saw her pedi b/c her GERD is not resolved and she is still having lower GI issues, even some blood in her stool, despite eliminating egg. Her pedi ordered blood tests and referred her to a pediatric GI - we are going Feb 1st, which is actually pretty speedy in specialist land.
Despite the pokes and prods, Isla is a champ. She seems to process it all pretty well - yesterday she gave her owl a series of skin prick tests and then fed him safe foods. On that note she LOVES cooking right now too. (Look, now the box is an oven!)
I'm really glad b/c she is getting a kitchen, food & cooking supplies for Christmas. I can't wait to see her open it.We've enjoyed the rainy weather too!
It may be cliche, but experiencing things with a child really allows you to experience them again for the first time. Here we are on an outing to the canyon to look at the little creek.
Floating sticks down the creek...
Somethings don't float!
Friday, December 3, 2010
It's invading my dreams!!!
Lately, due to a million things, I've been missing yoga more than going to it. This is the only time I have to myself, other than when Isla is sleeping, and missing it is starting to take its toll.
When Isla was first diagnosed I had insomnia
for a month, but lately I've been having anxiety dreams loosely related to food allergies.
Last night I dreamed that I was trying to find something safe to feed Isla in a cafeteria and there was a group of people eating unsafe food near us and then I realized they were doing drugs. Then later I was trying to prepare food for Isla while she ran around and begged for my attention but I was cooking in my garage (
dreams are weird!) and struggling to keep everything clean. I accidentally put a bunch of safe cranberries on a plate with raw meat juice on it and then I noticed someone looking in through our mail-slot and had a gun.
It sounds pretty silly now, but I woke up with my heart racing. I'm sure a psychoanalyst would have a field day. I like how the food is all loosely related to deadly things - street drugs, ecoli, gun toting peeping toms...
...and if you read all that, wow! and thank you! Nothing is more boring than hearing about other people's dreams.
On a side note, if you are looking for a place to do some charitable giving this Holiday Season, please consider Kids With Food Allergies. While they may not have the most clever name in the world, they are an amazing nonprofit organization providing support, education and resources to parents of kids with food allergies. I could cry when I think of how awesome the on-line support group has been - with specific holiday guides, "after the epi" support circles, a massive on-line recipe data base and much more, KWFA has become an invaluable resource. One of the best aspects is that they have very strict polices about discussing only peer reviewed and empirically validated conditions and treatments and they have medical advisers to ensure that members are getting the most accurate information.
When Isla was first diagnosed I had insomnia
for a month, but lately I've been having anxiety dreams loosely related to food allergies.Last night I dreamed that I was trying to find something safe to feed Isla in a cafeteria and there was a group of people eating unsafe food near us and then I realized they were doing drugs. Then later I was trying to prepare food for Isla while she ran around and begged for my attention but I was cooking in my garage (
dreams are weird!) and struggling to keep everything clean. I accidentally put a bunch of safe cranberries on a plate with raw meat juice on it and then I noticed someone looking in through our mail-slot and had a gun.It sounds pretty silly now, but I woke up with my heart racing. I'm sure a psychoanalyst would have a field day. I like how the food is all loosely related to deadly things - street drugs, ecoli, gun toting peeping toms...
...and if you read all that, wow! and thank you! Nothing is more boring than hearing about other people's dreams.
On a side note, if you are looking for a place to do some charitable giving this Holiday Season, please consider Kids With Food Allergies. While they may not have the most clever name in the world, they are an amazing nonprofit organization providing support, education and resources to parents of kids with food allergies. I could cry when I think of how awesome the on-line support group has been - with specific holiday guides, "after the epi" support circles, a massive on-line recipe data base and much more, KWFA has become an invaluable resource. One of the best aspects is that they have very strict polices about discussing only peer reviewed and empirically validated conditions and treatments and they have medical advisers to ensure that members are getting the most accurate information.
Monday, November 15, 2010
Updates Postponed...
I just got over the stomach flu, thanks to some zofran and 2 bags of IV fluids at Urgent Care. Now Andrew is throwing up (poor Andrew!) and we are just waiting for Isla to get the bug. (Please God no!!!)
Earlier tonight, while reading through 117 pages of the NIAID (National Institute of Allergy and Infectious Diseases) latest tome, Guidelines for the Diagnosis and Management of Food Allergy, I heard Isla bumping around in her crib and I found her reading The BugaBees in her crib. "I reading Bug-a-BEES!!!"
I just peeked in on her. She was sleeping on the book with it turned to the page about Dragonfly, who can't eat soy.
"No thank you! That's really ok! I can still have lots of fun without soy anyway."
Earlier tonight, while reading through 117 pages of the NIAID (National Institute of Allergy and Infectious Diseases) latest tome, Guidelines for the Diagnosis and Management of Food Allergy, I heard Isla bumping around in her crib and I found her reading The BugaBees in her crib. "I reading Bug-a-BEES!!!"
I just peeked in on her. She was sleeping on the book with it turned to the page about Dragonfly, who can't eat soy."No thank you! That's really ok! I can still have lots of fun without soy anyway."
Wednesday, November 3, 2010
What is Anaphylaxis?
I've had some questions about what an anaphylactic reaction is... Up until we met with the allergist in September I always thought it was the throat swelling shut and most people I've talked to think something along the same line.
Here's what the CDC says:
Anaphylaxis is a severe life-threatening reaction that involves multiple organ systems and can progress rapidly. Symptoms and signs of anaphylaxis can include but are not limited to generalized urticaria, wheezing, swelling of the mouth and throat, difficulty breathing, vomiting, hypotension, decreased level of consciousness, and shock. Minor symptoms such as red eyes or hoarse voice also might be present.
(Interestingly, Isla did have red eyes in the corner of her eyes.)
Why am I looking at the CDC website?
To find this...
"A VSD (CDC's Vaccine Safety Data Link) study of children aged younger than 18 years in four health maintenance organizations during 1991–1997 estimated the overall risk for postvaccination anaphylaxis after childhood vaccine to be approximately 1.5 cases per 1 million doses administered, and in this study, no cases were identified in TIV recipients."
Isla is 1.5 in a million!
Here's what the CDC says:
Anaphylaxis is a severe life-threatening reaction that involves multiple organ systems and can progress rapidly. Symptoms and signs of anaphylaxis can include but are not limited to generalized urticaria, wheezing, swelling of the mouth and throat, difficulty breathing, vomiting, hypotension, decreased level of consciousness, and shock. Minor symptoms such as red eyes or hoarse voice also might be present.
(Interestingly, Isla did have red eyes in the corner of her eyes.)
Why am I looking at the CDC website?
To find this...
"A VSD (CDC's Vaccine Safety Data Link) study of children aged younger than 18 years in four health maintenance organizations during 1991–1997 estimated the overall risk for postvaccination anaphylaxis after childhood vaccine to be approximately 1.5 cases per 1 million doses administered, and in this study, no cases were identified in TIV recipients."
Isla is 1.5 in a million!
Tuesday, November 2, 2010
Isla's Big Ride
I think many of you know that Isla had anaphylaxis yesterday, but I havn't had a chance to get back to everyone (I was at the doctor or in "Waiting for the Dr. to call back" cell phone limbo most of today), so here's the story...We went to her allergist Monday morning for the skin prick test for the flu shot. It was negative (meaning the shot should be safe) so the allergist administered a 1/2 dose, we waited 15 minutes, they administered a second dose, we waited 15 minutes and then we were cleared to go. She was fine in the office.
When we got in the car she got really quiet, but it was close to her nap time so I didn't think twice about it. I had promised her we would go to the zoo after the doctor (I had no idea it was going to be such a long appointment), so we headed to the zoo to meet a Amanda & little Michael. When we pulled into the parking lot (about 45 minutes after the 2nd shot) Isla started coughing and coughing. Right when I (finally) found a parking spot she started projectile vomiting profusely. (Our car was drenched in vomit!)
I ran around to her and time seemed to slow down. This happened in about 2 minutes, but it seemed like 20 minutes. She seemed kind of out of it but was crying & throwing up. I grabbed the epi and then totally panicked and wondered if I should epi or not. I actually dialed the allergist's office and got the "If this is an emergency, hang up and dial 911." I hung up, read the flow chart on her Food Allergy Action Plan twice and realized that it wasn't a question of whether or not to epi her, she was clearly in anaphylaxis. I gave her the epi, but forgot to take off the blue cap that releases the needle. It was actually motivating because she didn't seem to care too much that I had just jabbed a plastic stick into her leg. I took off the cap and actually gave her the pen and it was amazing. She responded immediately. She started screaming and crying and was definitely not a limp noodle anymore.
Amanda pushed little Michael up right when I was giving her the pen and let me tell you, if you are ever in an emergency, Amanda is the girl to have by your side. She seemed to be totally on top of things. I think she called 911 while I took Isla out of the car seat. Isla threw up again while I was talking to the operator. Amanda took my screaming, vomit covered baby, undressed her sat her in the back of the car and held her while she bawled. Within the minutes the ambulance and a fire truck and zoo security arrived. Everyone was really wonderful. By this time Isla was still upset but doing much better and did not need the second epi. Amanda saved the day again by getting my phone, keys and diaper bag to me before we left for the hospital and calling Andrew. I am SO indescribably thankful that Amanda was there - having another adult with me who stayed calm and supportive the entire time made everything so much easier.
The EMT was so reassuring and kind to to Isla. Once we were calm, she was hooked up to everything and had stopped crying he told me, "I know this is terrible for you and we never like seeing sick little kids, but it is so nice to help a sweet little baby instead of a drunk who got in a fight. This is why I do this job." Wow! If you're in our area and need an EMT, ask for Adam! Isla really fought the bed at first but calmed down and actually stopped crying in the ambulance. Adam kept telling her about the ambulance and I didn't think she was listening or really cared, but then later in the hospital when she was doing a lot better she suddenly perked up and said, "Isla ride in AAM-boo-lance!" She's been mentioning that today too.
We got to Children's and they checked her out again. She spiked a fever (not typical for allergic reactions to food) at the start of our ride but it was low fever by the time we got to the hospital and gone soon after. She had a normal temp at the allergist this AM and was not acting sick in anyway before any of this, ate all her normal foods, and has not been around other kids in the past week, so they decided it was definitely a reaction to the shot and that a fever is not outside the norm following a vaccine.At the hospital they gave her steroids, benadryl and zantac and put her in observation for 5 and a half hours. It took a long time for her heart rate to go back down, but other than that she was fine - they said that meant the epi was still slightly in effect and monitor her closely for another reaction later in the evening when it was completely worn off.
Everyone at the hospital was amazing. They let me hold her the whole time and put on the movie Madagascar when the EMT told them that we had been about to go to the zoo. We picked up this little guy at the gift shop for Isla to keep her entertained when she started to perk up.
(Who knew I would someday like Elmo?)
After we got home she started pulling at her tongue and mouth (as if trying to take a hair out of her mouth or like her mouth was itching.) We gave her more benadryl and we are keeping an eye on her, but this morning she was fine - just a little more drooling and tongue scratching, some gross diapers and "allergic shiners" (little black eyes) that have almost faded. We went to her pediatrician this morning and we are seeing her allergist on Monday.
Hopefully we will find out more then - we, obviously, have a lot of questions. I'm still feeling pretty overwhelmed about everything and wondering what this means for future vaccines and for egg, and everything else, but mostly I'm just so immensely thankful she is ok and glad I actually could do the epi when I needed too.
When we got in the car she got really quiet, but it was close to her nap time so I didn't think twice about it. I had promised her we would go to the zoo after the doctor (I had no idea it was going to be such a long appointment), so we headed to the zoo to meet a Amanda & little Michael. When we pulled into the parking lot (about 45 minutes after the 2nd shot) Isla started coughing and coughing. Right when I (finally) found a parking spot she started projectile vomiting profusely. (Our car was drenched in vomit!)
I ran around to her and time seemed to slow down. This happened in about 2 minutes, but it seemed like 20 minutes. She seemed kind of out of it but was crying & throwing up. I grabbed the epi and then totally panicked and wondered if I should epi or not. I actually dialed the allergist's office and got the "If this is an emergency, hang up and dial 911." I hung up, read the flow chart on her Food Allergy Action Plan twice and realized that it wasn't a question of whether or not to epi her, she was clearly in anaphylaxis. I gave her the epi, but forgot to take off the blue cap that releases the needle. It was actually motivating because she didn't seem to care too much that I had just jabbed a plastic stick into her leg. I took off the cap and actually gave her the pen and it was amazing. She responded immediately. She started screaming and crying and was definitely not a limp noodle anymore.
Amanda pushed little Michael up right when I was giving her the pen and let me tell you, if you are ever in an emergency, Amanda is the girl to have by your side. She seemed to be totally on top of things. I think she called 911 while I took Isla out of the car seat. Isla threw up again while I was talking to the operator. Amanda took my screaming, vomit covered baby, undressed her sat her in the back of the car and held her while she bawled. Within the minutes the ambulance and a fire truck and zoo security arrived. Everyone was really wonderful. By this time Isla was still upset but doing much better and did not need the second epi. Amanda saved the day again by getting my phone, keys and diaper bag to me before we left for the hospital and calling Andrew. I am SO indescribably thankful that Amanda was there - having another adult with me who stayed calm and supportive the entire time made everything so much easier.
The EMT was so reassuring and kind to to Isla. Once we were calm, she was hooked up to everything and had stopped crying he told me, "I know this is terrible for you and we never like seeing sick little kids, but it is so nice to help a sweet little baby instead of a drunk who got in a fight. This is why I do this job." Wow! If you're in our area and need an EMT, ask for Adam! Isla really fought the bed at first but calmed down and actually stopped crying in the ambulance. Adam kept telling her about the ambulance and I didn't think she was listening or really cared, but then later in the hospital when she was doing a lot better she suddenly perked up and said, "Isla ride in AAM-boo-lance!" She's been mentioning that today too.
We got to Children's and they checked her out again. She spiked a fever (not typical for allergic reactions to food) at the start of our ride but it was low fever by the time we got to the hospital and gone soon after. She had a normal temp at the allergist this AM and was not acting sick in anyway before any of this, ate all her normal foods, and has not been around other kids in the past week, so they decided it was definitely a reaction to the shot and that a fever is not outside the norm following a vaccine.At the hospital they gave her steroids, benadryl and zantac and put her in observation for 5 and a half hours. It took a long time for her heart rate to go back down, but other than that she was fine - they said that meant the epi was still slightly in effect and monitor her closely for another reaction later in the evening when it was completely worn off.
Everyone at the hospital was amazing. They let me hold her the whole time and put on the movie Madagascar when the EMT told them that we had been about to go to the zoo. We picked up this little guy at the gift shop for Isla to keep her entertained when she started to perk up.
(Who knew I would someday like Elmo?)After we got home she started pulling at her tongue and mouth (as if trying to take a hair out of her mouth or like her mouth was itching.) We gave her more benadryl and we are keeping an eye on her, but this morning she was fine - just a little more drooling and tongue scratching, some gross diapers and "allergic shiners" (little black eyes) that have almost faded. We went to her pediatrician this morning and we are seeing her allergist on Monday.
Hopefully we will find out more then - we, obviously, have a lot of questions. I'm still feeling pretty overwhelmed about everything and wondering what this means for future vaccines and for egg, and everything else, but mostly I'm just so immensely thankful she is ok and glad I actually could do the epi when I needed too.
Thursday, October 7, 2010
3 Weeks Down
It has been 3 weeks since Isla's allergist appointment.
Since then it feels like I've spent 90% of my free time on the internet and reading books about allergies. Isla's doctor referred us to some very good parent support groups and that has been very helpful too. I've also had the wonderful support of Gretchen's friend, Jenn, who has a daughter with severe food allergies.
To Do List:
Family and friends, I'm sorry if this is all I can talk about right now - it is all I can think about right now...my brain is totally on a boring, boring, stressful loop! ...but I really think things will be back on track soon!
Isla is thriving! She loves Halloween - we've been reading books and signing songs and wearing Halloween clothes and costumes and getting in the spirit.
Since then it feels like I've spent 90% of my free time on the internet and reading books about allergies. Isla's doctor referred us to some very good parent support groups and that has been very helpful too. I've also had the wonderful support of Gretchen's friend, Jenn, who has a daughter with severe food allergies.
To Do List:
- Get epipens - Done
- Get epipen Case - Done
- Join Parent Support Groups - Done
- Get Medic Alert Bracelet - Done
- Prepare Emergency Travel Kit - Done
- Re-organize kitchen to isolate all unsafe food to one area - Done
- Buy overpriced Top-8 free Halloween Candy - Done
- Handle our first big social event - Done (Grandma A's wedding! Congrats!)
- Label all unsafe food - Done, except freezer (I LOVE my label maker!)
- Read "Food Allergies for Dummies" - 1/2 way Done
- Learn to make my own (non-soy or peanut contaminated) Sunbutter - 1/2 way Done
- Update Medical Passport - To Do!
- Create Action Plan - To Do!
- Create Emergency Station - To Do!
- Call Airline for holidays to notify them that we will be bringing an epipen and a peanut allergy on board. - To Do!
- Schedule flu shot at allergist - To Do!
- Learn how to manage my stress, conquer the insomnia that started the night after our appointment, and stop having food allergy related nightmares. - To Do! (although it is getting easier every day! I'm getting more sleep and doing less teeth grinding every night.)
Family and friends, I'm sorry if this is all I can talk about right now - it is all I can think about right now...my brain is totally on a boring, boring, stressful loop! ...but I really think things will be back on track soon!
Isla is thriving! She loves Halloween - we've been reading books and signing songs and wearing Halloween clothes and costumes and getting in the spirit.
Friday, September 17, 2010
Allergy Update
Last night when I was getting all our paperwork together for today's appointment I found these allergy related posts extremely helpful - I wrote more details on here than in my babybook or parenting journal. Apparently, typing makes it a lot easier to include all the details, so get ready...
I'm feeling mixed about the appointment - it was good, but the result is that she still has allergies and they are more serious than I thought, so that makes me bummed.
Dr. W was AMAZING! He comes with some rockin' credentials in the field of pediatric allergy and immunology and we've been waiting since early August to see him. It was worth the wait. The appointment took 2.5 hours and was very thorough. Dr. W was so nice to Isla. There was a playhouse and ride-on cars (it was the most sterile yet kid friendly place I've ever been) in the waiting area and Isla was having a blast playing when he came out. Instead of going in the back he suggested we discuss her history out there so she could keep playing. It was great. I've never been able to give her pediatrician more than 50% of my attention, so it was nice to give 80% for once. He asked tons of questions and was able to connect some dots that were only speculative beforehand. For example, her GERD was most certainly an early manifestation of her MSPI.
After the history we went to an exam room and he did a physical exam and a nurse did a skin prick test for a bunch of environmental and food allergies. Isla is officially fine with male doctors and terrified of female nurses. She screamed throughout the test and it was hard to keep her from scratching her back while we waited, but we brought lots of books and toys and she settled down. The nurse came back and read the results and rubbed her back with about 1/4 cup of hydrocortisone cream. Isla was totally freaking, but I kept telling her, "No shots today, no bandaids today" and she calmed down.
The great news is that she didn't have any reactions to the environmental allergies they tested for. Since we have carpets and mildew issues in our lovely rental, I was worried that she might have some. We are still doing a zyrtec trial because of some nose rubbing that our pediatrician was concerned about. I'm not too concerned - just happy that the mold is not an issue. He also said it is extremely rare for toddlers and babies to have environmental allergies unless they have other severe histamine reactions.
The food tests included avocado, milk, soy, eggs, peanuts, and possibly some that I can't remember. The office was out of kiwi scratch juice (that's the technical term), so they didn't test kiwi.
Here are the results -
Avocado - negative
Dairy- negative
Peanuts - mild reaction
Eggs - mild reaction
Soy - big reaction
Here's what all this means:
(I plan to learn more, because I feeling like I have to barest grasp on all this.)
Based on Isla's medical history and the challenges we did during the summer, she has a Non-IgE mediated food allergy to dairy and soy. She will continue to be off these until January when we will probably do another challenge. There is no test to confirm this type of allergy, but her symptoms are "classic."
Isla can continue to eat egg because she is not currently having a reaction, but it could explain the on again off again diarrhea.
Isla can't have peanuts until she is three. Isla has never had peanuts (She is a sunflower seed butter fan) and we're told to wait until she is three before introducing them because of her other reactions when she was 4 months old. Dr. W confirmed this. Apparently it could go either way, so I'm not going to think about it for the next year and a half.
Isla can't have avocados. Despite the negative test, the Dr. was not thrilled with her reaction, so for the time being she is still can't enjoy her daddy's guacamole - the yummiest guac ever made! (This is sad too, because Isla loves spicy food right now! Just typing this is making my mouth water!)
Isla can't have kiwis until she is tested -not a huge impact on our lifestyle.
In addition to the Non-IgE mediated soy allergy, Isla has a IgE (histamine) allergy to soy. She has had minimal exposure to soy since I removed it from my diet, although that explains the really strong reaction to that formula we tried. Because of her reaction during the skin prick test the Dr. gave her an EpiPen Jr 2 Pak. Hopefully we will never have to use it. The Dr. gave me lessons and a little rhyme ("More than skin, pen goes in" Isn't that poetic...) and we have a practice pen so I can train Andrew and any babysitters. I am totally bummed about this - it just seems so much more stressful that the Non-IgE allergies, but on the other hand, I'm really glad that we have the medication in case she ever needs it. It makes eating out, introducing new foods and having babysitters less stressful.
Dr. W said her current diet is great and that he was impressed with how healthy she is. That was nice to hear, since it is a lot of planning and label reading.
At the end of the appointment Isla went berserk running around the office and talking to the receptionist. It was really cute.
PS - We went to Costco afterward to get her medicine and I stress bought some pumpkin cheesecake fudge from the roadshow. Isla was playing with my phone pretending to call Grandma and her Godsister, Teal. She held my phone and said, "Call Teal" then she held it up to her ear and said, "Hellooooo Yuma!" It was hilarious.
PPS - Isla's back is almost totally better now.
I'm feeling mixed about the appointment - it was good, but the result is that she still has allergies and they are more serious than I thought, so that makes me bummed.
Dr. W was AMAZING! He comes with some rockin' credentials in the field of pediatric allergy and immunology and we've been waiting since early August to see him. It was worth the wait. The appointment took 2.5 hours and was very thorough. Dr. W was so nice to Isla. There was a playhouse and ride-on cars (it was the most sterile yet kid friendly place I've ever been) in the waiting area and Isla was having a blast playing when he came out. Instead of going in the back he suggested we discuss her history out there so she could keep playing. It was great. I've never been able to give her pediatrician more than 50% of my attention, so it was nice to give 80% for once. He asked tons of questions and was able to connect some dots that were only speculative beforehand. For example, her GERD was most certainly an early manifestation of her MSPI.
After the history we went to an exam room and he did a physical exam and a nurse did a skin prick test for a bunch of environmental and food allergies. Isla is officially fine with male doctors and terrified of female nurses. She screamed throughout the test and it was hard to keep her from scratching her back while we waited, but we brought lots of books and toys and she settled down. The nurse came back and read the results and rubbed her back with about 1/4 cup of hydrocortisone cream. Isla was totally freaking, but I kept telling her, "No shots today, no bandaids today" and she calmed down.
The great news is that she didn't have any reactions to the environmental allergies they tested for. Since we have carpets and mildew issues in our lovely rental, I was worried that she might have some. We are still doing a zyrtec trial because of some nose rubbing that our pediatrician was concerned about. I'm not too concerned - just happy that the mold is not an issue. He also said it is extremely rare for toddlers and babies to have environmental allergies unless they have other severe histamine reactions.
The food tests included avocado, milk, soy, eggs, peanuts, and possibly some that I can't remember. The office was out of kiwi scratch juice (that's the technical term), so they didn't test kiwi.
Here are the results -
Avocado - negative
Dairy- negative
Peanuts - mild reaction
Eggs - mild reaction
Soy - big reaction
Here's what all this means:
(I plan to learn more, because I feeling like I have to barest grasp on all this.)
Based on Isla's medical history and the challenges we did during the summer, she has a Non-IgE mediated food allergy to dairy and soy. She will continue to be off these until January when we will probably do another challenge. There is no test to confirm this type of allergy, but her symptoms are "classic."
Isla can continue to eat egg because she is not currently having a reaction, but it could explain the on again off again diarrhea.
Isla can't have peanuts until she is three. Isla has never had peanuts (She is a sunflower seed butter fan) and we're told to wait until she is three before introducing them because of her other reactions when she was 4 months old. Dr. W confirmed this. Apparently it could go either way, so I'm not going to think about it for the next year and a half.
Isla can't have avocados. Despite the negative test, the Dr. was not thrilled with her reaction, so for the time being she is still can't enjoy her daddy's guacamole - the yummiest guac ever made! (This is sad too, because Isla loves spicy food right now! Just typing this is making my mouth water!)
Isla can't have kiwis until she is tested -not a huge impact on our lifestyle.
In addition to the Non-IgE mediated soy allergy, Isla has a IgE (histamine) allergy to soy. She has had minimal exposure to soy since I removed it from my diet, although that explains the really strong reaction to that formula we tried. Because of her reaction during the skin prick test the Dr. gave her an EpiPen Jr 2 Pak. Hopefully we will never have to use it. The Dr. gave me lessons and a little rhyme ("More than skin, pen goes in" Isn't that poetic...) and we have a practice pen so I can train Andrew and any babysitters. I am totally bummed about this - it just seems so much more stressful that the Non-IgE allergies, but on the other hand, I'm really glad that we have the medication in case she ever needs it. It makes eating out, introducing new foods and having babysitters less stressful.
Dr. W said her current diet is great and that he was impressed with how healthy she is. That was nice to hear, since it is a lot of planning and label reading.
At the end of the appointment Isla went berserk running around the office and talking to the receptionist. It was really cute.
PS - We went to Costco afterward to get her medicine and I stress bought some pumpkin cheesecake fudge from the roadshow. Isla was playing with my phone pretending to call Grandma and her Godsister, Teal. She held my phone and said, "Call Teal" then she held it up to her ear and said, "Hellooooo Yuma!" It was hilarious.
PPS - Isla's back is almost totally better now.
Thursday, July 29, 2010
My Ever Changing Relationship with Isla's Pediatrician (and an allergy update)
Isla's Dr. is a much older dude with loads and loads of experience and expertise. He is known by everyone in the local medical profession - seriously, my mole Dr. completely knew who he is - and he really respected. He teaches at a local medical school and in his own mild mannered way, he is king of pediatrics in our neck of the woods.
I was awed and attracted to all this when pedi shopping, and I also really liked our prenatal interview with him.
He visited Isla everyday in the hospital and had her in his office twice before she was a week old to make sure she was gaining weight. He paraded her around the office on her first visit, introducing her to everyone and garnering all the love, admiration and joy two parents could possibly hope for.
When I cried over something in my postpartum haze he told me it was okay and reminded me that pediatricians were 50% doctor and 50% grandparent.
He noticed Isla's bizarre neck issue and had us do little exercises with her, preventing the need for "helmet therapy."
He helped us deal with months of thrush and finally did the work my own Dr. should have done to figure out what medicine I needed.
He tolerates my paranoia about vaccines and ear infections and any other issue that is currently on the yahoo news feed.
He diagnosed Isla with GERD and worked with her until we found a medication that worked.
...and when she started having GI issues, he met with me over and over until they were resolved - diagnosis milk/soy protein allergy /intolerance.
On top of all this, Nurse Helen just happens to be the greatest nurse ever, with the exception of Nurse Grandma Suzi!
However, sometimes I feel like he doesn't (always) take me seriously. Once he talked to me (colleague to colleague) about the parents of children with ASD that will read anything on-line about ASD and beleive it. Now I'm familiar with these parents and on one hand, I couldn't agree more. On the other hand, I am the parent who spends all night reading everything that google can find on torticollis, GERD, ear infections, MSPI/A and any other concern that crosses into my over-active paranoid parent world. So while I agree, I now also feel foolish bringing up my own research to him. He has never been rude about things I bring up, but is occasionally dismissive.
His office often has a huge wait. Sometimes I wonder if he is too busy, or if he is too wrapped up in teaching, or if he is too old, or too conservative in his treatments, or too proud to make a referral, or too eight million other concerns. On top of all this, amazing nurse Helen just got switched to a different Dr. and we have a new, very nice, unfamiliar nurse - I can never remember her name.
I also get so overwhelmed by his awesome expertise and reputation (sort of my own internal appeal to authority, I know), that I never feel like I can assert myself or express myself during appointments.
Today I stressed out about communicating with him and talked to Grandma Suzi, RN for half an hour before my appointment. I also wrote down almost all my questions, took time to pull myself together and put on makeup before my appointment and did deep breathing and mental pep talking in the waiting room.
I'm not sure if it was due to all my preparations or if he was just in a more receptive mood, or if he's finally decided that Isla is not just going to "grow out of her allergies," (Hopefully she will!) but today was a wonderful appointment.
He listened to everything, came up with an action plan for figuring out the milk situation that is totally reasonable, discussed alternative sources of nutrients and gave us instructions for treating the avocado allergy. I left feeling like we were figuring everything out and not feeling like he thinks I'm a nut.
When he (or I - I'm not sure!) am in the right mood/frame of mind/etc.etc.etc., I still think he's an awesome wonderful doctor and I'm so glad he's Isla's Dr., but then I think about how stressed I get before appointments and that worries me too!
The question is... is this me or him? Is this a Dr. thing or a this Dr. thing?
I think no matter what we will switch doctors if we have two kids. The drive is too much to imagine with two kids..but that is in the undefined future - what am I going to do until that blessed day arrives.
PS - (a few days later) What is going on with Isla's allergies? Last time I posted we had just had fantastic results with the re-introduction of wheat. No reaction whatsoever. Isla's been enjoying wheat for over a month! So my plan was to do a milk trial and then post the happy results after we finished. We introduced milk and other than more burping, gas and hiccups, Isla seemed to be doing great for 4 days. I went out and bought a bunch of milk and milk products and the next day she had diarrhea which got progressively worse over the next 36 hours. I'll spare you the details, but after a trip to the doctor, we were off dairy for a week after her symptoms cleared up. Her symptoms cleared up in 1 day off milk and 8 days after our appointment we re-reintroduced milk. This time she was great for 4.5 days. The morning of the 5th day I bought a gallon jug of whole organic milk thinking we were in the clear and moments after returning from the store the GI issues were back in full force.
We met with the doctor again - a very productive appointment (see above) - and came up with this plan: hold regular milk and put Isla on Similac Sensitive, a lactose free formula with milk protein. If Isla reacts to the formula then it is a strong indication of a milk protein allergy. If she doesn't react, then it is a good indication that she is lactose intolerant. (The end result is the same - a restricted diet and special milk, but the treatment for each is different, and there is no risk of lactose intolerance turning into a serious health problem.) The reason we were doing all this is because her RAST tests did not identify an allergy and her delayed reaction is more consistent with an intolerance than an allergy (although it is consistent with a non-IgE mediated allergic reaction, but I'm not going to get into all that right now.)
We introduced the formula and she began having GI symptoms that day. (BTW, lactose free formula may ) We kept giving it to her for another 24 hours (the best part of these trials is continuing to give your child the food that is making them sick, just to make sure it is really making them sick) and she continued to have issues. Then I noticed that Similac Sensitive contains soy. Awesome. So now I don't know what she was reacting to. I stopped the formula (anyone want a barely used can of expensive formula - seriously, let me know.) We are waiting to see if we can use lactaid instead until Monday (not a big deal since she needs to be symptom free for a week before we introduce a new milk alternative.) Her symptoms stopped as soon as we stopped the formula, so that is good.
On the plus side she broke out in mild hives around her mouth immediately after eating dinner tonight. They went away quickly and the only other symptom that showed up is a stuffy nose. This is awesome because she has never had this type of reaction before. New foods tonight were Sweet Baby Rays "Gar-be-que" sauce and the white wine I used to cook the pork chops. (Although I could swear she has had both before, but I'm not sure.)
Well that is that...
I was awed and attracted to all this when pedi shopping, and I also really liked our prenatal interview with him.
He visited Isla everyday in the hospital and had her in his office twice before she was a week old to make sure she was gaining weight. He paraded her around the office on her first visit, introducing her to everyone and garnering all the love, admiration and joy two parents could possibly hope for.
When I cried over something in my postpartum haze he told me it was okay and reminded me that pediatricians were 50% doctor and 50% grandparent.
He noticed Isla's bizarre neck issue and had us do little exercises with her, preventing the need for "helmet therapy."
He helped us deal with months of thrush and finally did the work my own Dr. should have done to figure out what medicine I needed.
He tolerates my paranoia about vaccines and ear infections and any other issue that is currently on the yahoo news feed.
He diagnosed Isla with GERD and worked with her until we found a medication that worked.
...and when she started having GI issues, he met with me over and over until they were resolved - diagnosis milk/soy protein allergy /intolerance.
On top of all this, Nurse Helen just happens to be the greatest nurse ever, with the exception of Nurse Grandma Suzi!
However, sometimes I feel like he doesn't (always) take me seriously. Once he talked to me (colleague to colleague) about the parents of children with ASD that will read anything on-line about ASD and beleive it. Now I'm familiar with these parents and on one hand, I couldn't agree more. On the other hand, I am the parent who spends all night reading everything that google can find on torticollis, GERD, ear infections, MSPI/A and any other concern that crosses into my over-active paranoid parent world. So while I agree, I now also feel foolish bringing up my own research to him. He has never been rude about things I bring up, but is occasionally dismissive.
His office often has a huge wait. Sometimes I wonder if he is too busy, or if he is too wrapped up in teaching, or if he is too old, or too conservative in his treatments, or too proud to make a referral, or too eight million other concerns. On top of all this, amazing nurse Helen just got switched to a different Dr. and we have a new, very nice, unfamiliar nurse - I can never remember her name.
I also get so overwhelmed by his awesome expertise and reputation (sort of my own internal appeal to authority, I know), that I never feel like I can assert myself or express myself during appointments.
Today I stressed out about communicating with him and talked to Grandma Suzi, RN for half an hour before my appointment. I also wrote down almost all my questions, took time to pull myself together and put on makeup before my appointment and did deep breathing and mental pep talking in the waiting room.
I'm not sure if it was due to all my preparations or if he was just in a more receptive mood, or if he's finally decided that Isla is not just going to "grow out of her allergies," (Hopefully she will!) but today was a wonderful appointment.
He listened to everything, came up with an action plan for figuring out the milk situation that is totally reasonable, discussed alternative sources of nutrients and gave us instructions for treating the avocado allergy. I left feeling like we were figuring everything out and not feeling like he thinks I'm a nut.
When he (or I - I'm not sure!) am in the right mood/frame of mind/etc.etc.etc., I still think he's an awesome wonderful doctor and I'm so glad he's Isla's Dr., but then I think about how stressed I get before appointments and that worries me too!
The question is... is this me or him? Is this a Dr. thing or a this Dr. thing?
I think no matter what we will switch doctors if we have two kids. The drive is too much to imagine with two kids..but that is in the undefined future - what am I going to do until that blessed day arrives.
PS - (a few days later) What is going on with Isla's allergies? Last time I posted we had just had fantastic results with the re-introduction of wheat. No reaction whatsoever. Isla's been enjoying wheat for over a month! So my plan was to do a milk trial and then post the happy results after we finished. We introduced milk and other than more burping, gas and hiccups, Isla seemed to be doing great for 4 days. I went out and bought a bunch of milk and milk products and the next day she had diarrhea which got progressively worse over the next 36 hours. I'll spare you the details, but after a trip to the doctor, we were off dairy for a week after her symptoms cleared up. Her symptoms cleared up in 1 day off milk and 8 days after our appointment we re-reintroduced milk. This time she was great for 4.5 days. The morning of the 5th day I bought a gallon jug of whole organic milk thinking we were in the clear and moments after returning from the store the GI issues were back in full force.
We met with the doctor again - a very productive appointment (see above) - and came up with this plan: hold regular milk and put Isla on Similac Sensitive, a lactose free formula with milk protein. If Isla reacts to the formula then it is a strong indication of a milk protein allergy. If she doesn't react, then it is a good indication that she is lactose intolerant. (The end result is the same - a restricted diet and special milk, but the treatment for each is different, and there is no risk of lactose intolerance turning into a serious health problem.) The reason we were doing all this is because her RAST tests did not identify an allergy and her delayed reaction is more consistent with an intolerance than an allergy (although it is consistent with a non-IgE mediated allergic reaction, but I'm not going to get into all that right now.)
We introduced the formula and she began having GI symptoms that day. (BTW, lactose free formula may ) We kept giving it to her for another 24 hours (the best part of these trials is continuing to give your child the food that is making them sick, just to make sure it is really making them sick) and she continued to have issues. Then I noticed that Similac Sensitive contains soy. Awesome. So now I don't know what she was reacting to. I stopped the formula (anyone want a barely used can of expensive formula - seriously, let me know.) We are waiting to see if we can use lactaid instead until Monday (not a big deal since she needs to be symptom free for a week before we introduce a new milk alternative.) Her symptoms stopped as soon as we stopped the formula, so that is good.
On the plus side she broke out in mild hives around her mouth immediately after eating dinner tonight. They went away quickly and the only other symptom that showed up is a stuffy nose. This is awesome because she has never had this type of reaction before. New foods tonight were Sweet Baby Rays "Gar-be-que" sauce and the white wine I used to cook the pork chops. (Although I could swear she has had both before, but I'm not sure.)
Well that is that...
Monday, June 21, 2010
Wheat - Day 1
So far, so good!!!
She had sourdough toast with honey this morning and I haven't noticed any change.
We went to the zoo this morning and had another awesome day. I was planning to try our new umbrella stroller, but I forgot it - I've been forgetting everything lately!!! - so we used the carrier instead and she was happy as a clam and loved the better perspective.
The AM zoo trips are amazing!
She had sourdough toast with honey this morning and I haven't noticed any change.
We went to the zoo this morning and had another awesome day. I was planning to try our new umbrella stroller, but I forgot it - I've been forgetting everything lately!!! - so we used the carrier instead and she was happy as a clam and loved the better perspective.
The AM zoo trips are amazing!
Wednesday, June 16, 2010
Allergy Update
This blog is 45% update for the familia and 45% baby book and 10% blowing off steam.
This post falls in the aforementioned 10%.
This is another with poop details, so consider yourself warned.
Yesterday we re-introduced avocados. I was expecting no reaction. By the time we identified avocados as a possible trigger last fall, I was so freaked and paranoid about allergies that I assumed that I had overreacted to some random harmless baby rash.
Well, I was wrong. I posted some photos in the previous post that show her rash. I called the Dr. and they said that since the reaction was delayed (3 hours) and minor we could try it again today.
We did and within an hour she started rubbing her face, within 3 hours she got another (bigger) rash, and became super fussy and had stinky, green and mucousy diarrhea.
So now avocados are out, and so is latex (not that she's been running around wearing latex gloves), because there is a risk of a cross reaction.
I am REALLY hoping that this is it! I hope our other challenges go fine, because, really, avocado would be the easiest food to live without (although Andrew is a little sad that Isla can't eat his best-in-the-universe guacamole).
This post falls in the aforementioned 10%.
This is another with poop details, so consider yourself warned.
Yesterday we re-introduced avocados. I was expecting no reaction. By the time we identified avocados as a possible trigger last fall, I was so freaked and paranoid about allergies that I assumed that I had overreacted to some random harmless baby rash.
Well, I was wrong. I posted some photos in the previous post that show her rash. I called the Dr. and they said that since the reaction was delayed (3 hours) and minor we could try it again today.
We did and within an hour she started rubbing her face, within 3 hours she got another (bigger) rash, and became super fussy and had stinky, green and mucousy diarrhea.
So now avocados are out, and so is latex (not that she's been running around wearing latex gloves), because there is a risk of a cross reaction.
I am REALLY hoping that this is it! I hope our other challenges go fine, because, really, avocado would be the easiest food to live without (although Andrew is a little sad that Isla can't eat his best-in-the-universe guacamole).
Wednesday, June 9, 2010
U No Poo
I re-read Harry Potter this year and Andrew & I were just talking about how much we love Fred & George, so the post title is a tribute to them.
As you may have gathered from the post title, this is a post about poo... Consider yourself warned.
The post is also an Isla update...
My last excited post re: her allergies was a little premature.
We are going to have to wait a little longer before we start the food challenges.
Isla has had diarrhea for two weeks - not a big deal, and something I thought was a side effect of 5th disease. I called the Dr. for more info about how to do the food challenges and asked if I should wait until her diarrhea cleared up before introducing the foods.
When they heard about the diarrhea that asked me to bring her in. We saw another Dr. who was a total stereotype of CA surfer dude, from his curly longish hair to his Sanucks. To top it off he had surfer posters on the walls. He was a great Dr. and very easy to talk too. He said Isla most likely has Toddler's Diarrhea, (btw, that is probably the worst word in the English language) a benign condition that effects toddlers for no particular reason (sometimes too much juice or fruit) and should clear up soon. Since it has been going on for a bit longer than "Classic Toddler's Diarrhea" he also gave me some kits to collect stool samples.
I'm not going to go into the details of collecting stool samples from a 'muddy' diaper (don't you love the euphemism after writing diarrhea so many times?) Needless to say, it was one of the grossest experiences in my life and made me completely rethink my secret dreams of becoming a nurse.
So, we will start doing allergy challenges when this clears up and they are going to be tediously slow - one food for two weeks or until she has a reaction.
The Marzipan Madness Ben & Jerry's is taunting me, dancing out of my grasp...
As you may have gathered from the post title, this is a post about poo... Consider yourself warned.
The post is also an Isla update...
My last excited post re: her allergies was a little premature.
We are going to have to wait a little longer before we start the food challenges.
Isla has had diarrhea for two weeks - not a big deal, and something I thought was a side effect of 5th disease. I called the Dr. for more info about how to do the food challenges and asked if I should wait until her diarrhea cleared up before introducing the foods.
When they heard about the diarrhea that asked me to bring her in. We saw another Dr. who was a total stereotype of CA surfer dude, from his curly longish hair to his Sanucks. To top it off he had surfer posters on the walls. He was a great Dr. and very easy to talk too. He said Isla most likely has Toddler's Diarrhea, (btw, that is probably the worst word in the English language) a benign condition that effects toddlers for no particular reason (sometimes too much juice or fruit) and should clear up soon. Since it has been going on for a bit longer than "Classic Toddler's Diarrhea" he also gave me some kits to collect stool samples.
I'm not going to go into the details of collecting stool samples from a 'muddy' diaper (don't you love the euphemism after writing diarrhea so many times?) Needless to say, it was one of the grossest experiences in my life and made me completely rethink my secret dreams of becoming a nurse.
So, we will start doing allergy challenges when this clears up and they are going to be tediously slow - one food for two weeks or until she has a reaction.
The Marzipan Madness Ben & Jerry's is taunting me, dancing out of my grasp...
Thursday, June 3, 2010
Great News!!!
It has been a rough week - Isla is getting over Parvovirus (aka "Fifth Disease" - aptly named because it is the 5th of 6 classical childhood illnesses that cause skin rashes, and happily one of the most minor). Isla had a high fever for three days, got bright pink cheeks and has been fussy fussy fussy. Teething and "coming down off vacation" has compounded everything and I think my super bad cold and bright pink cheeks might have been 5th disease too, so we've been a tired crabby crew.
Right now we are doing a Ferber Refresher Course, so everyone's nerves are a little on edge.
I really will post soon about our wonderful trip, but right now I'm going to bed.
...but first, some FANTASTIC news!!!
Isla had an allergy test on Wednesday and we got the results today (how's that for turn around!?!). She is NEGATIVE!!! That means that there is a very good chance she has outgrown her allergies.
The type of test she had (CAP-RAST) doesn't actually rule out allergies, it just "rules in" allergies, meaning if she tests positive, she does have allergies, but if she tests negative, she may have allergies, and she may not. The good news - the test is about 95% accurate for milk. The so-so news - it is 73% accurate for wheat and soy.
So, she still might have allergies, but we have the green light to start introducing the food at home.
Here's the plan - next week we will introduce avocados, then the week after that we are introducing wheat, than milk, and then soy.
I'm so excited that we might all be eating regular food again!
My only fear is that I might gain 50 lbs from all the dairy (but I was going to be facing that reality soon anyways when she weaned).
I'll keep you posted on her progress.
Interestingly I got the phone call as I was driving home from Target. Almost exactly a year ago (6-12-09) we first noticed the issue and I talked to the triage nurse in the Target parking lot.
Right now we are doing a Ferber Refresher Course, so everyone's nerves are a little on edge.
I really will post soon about our wonderful trip, but right now I'm going to bed.
...but first, some FANTASTIC news!!!
Isla had an allergy test on Wednesday and we got the results today (how's that for turn around!?!). She is NEGATIVE!!! That means that there is a very good chance she has outgrown her allergies.
The type of test she had (CAP-RAST) doesn't actually rule out allergies, it just "rules in" allergies, meaning if she tests positive, she does have allergies, but if she tests negative, she may have allergies, and she may not. The good news - the test is about 95% accurate for milk. The so-so news - it is 73% accurate for wheat and soy.
So, she still might have allergies, but we have the green light to start introducing the food at home.
Here's the plan - next week we will introduce avocados, then the week after that we are introducing wheat, than milk, and then soy.
I'm so excited that we might all be eating regular food again!
My only fear is that I might gain 50 lbs from all the dairy (but I was going to be facing that reality soon anyways when she weaned).
I'll keep you posted on her progress.
Interestingly I got the phone call as I was driving home from Target. Almost exactly a year ago (6-12-09) we first noticed the issue and I talked to the triage nurse in the Target parking lot.
Friday, November 20, 2009
Another bump in the feeding road...
I introduced multi-grain cereal a few days ago and noticed that Isla seemed to be getting very flushed cheeks and what looked like eczema on her cheeks within an hour of eating the cereal. After a few hours the rash would fade and by the following morning it was gone. I also noticed that she was getting dark circles under her eyes. Today I made a point to really look at her face before and after eating and it was clear that she was getting a rash after eating. I called our doctor and they confirmed that she has a wheat allergy. (Apparently another one of the most common baby allergies.) (Auntie Shanni - your genes are kicking in!)
Actually she never should have had wheat because of her other allergies, but somehow I missed the memo. Oops! (I'm glad she only had a rash!) Luckily, (because it is most likely an allergy, not an intolerance) she should grow out of it, just like the milk and soy, as long as she doesn't eat wheat now. On another good note, I don't need to cut wheat out of my diet because it hasn't bothered her in the past.
I'm feeling a little sad because I was getting so excited about introducing pasta and making bread for Isla. Now I will have to get creative with wheat-free flour.
Luckily one of my dear friends, Andrea, is an amazing gluten free chef, so I can get lots of ideas from her blog: http://tastyandglutenfree.blogspot.com/
I've already learned that Betty Crocker makes a wheat, soy and dairy free cake mix, so Isla's birthday cake is covered! (Who'd of thought that I'd be using a cake mix for Isla's first birthday cake!?! I'll have to doctor it up.)
On a GREAT note, we got to have our first play date with Little Elias! At just 4 weeks he is an absolutely handsome little man and we loved visiting him!
Actually she never should have had wheat because of her other allergies, but somehow I missed the memo. Oops! (I'm glad she only had a rash!) Luckily, (because it is most likely an allergy, not an intolerance) she should grow out of it, just like the milk and soy, as long as she doesn't eat wheat now. On another good note, I don't need to cut wheat out of my diet because it hasn't bothered her in the past.
I'm feeling a little sad because I was getting so excited about introducing pasta and making bread for Isla. Now I will have to get creative with wheat-free flour.
Luckily one of my dear friends, Andrea, is an amazing gluten free chef, so I can get lots of ideas from her blog: http://tastyandglutenfree.blogspot.com/
I've already learned that Betty Crocker makes a wheat, soy and dairy free cake mix, so Isla's birthday cake is covered! (Who'd of thought that I'd be using a cake mix for Isla's first birthday cake!?! I'll have to doctor it up.)
On a GREAT note, we got to have our first play date with Little Elias! At just 4 weeks he is an absolutely handsome little man and we loved visiting him!
Monday, July 20, 2009
Quick Update!
We're back from visiting my family in HOT NorCal!!!
Today I learned how to change a diaper, remove poopy shirt and wipe up and dress a (no longer) poopy baby while she is spitting up on my leg in an airplane bathroom - welcome to the new and stinky mile high club!
I also learned that my prenatals have soy in them. Awesome...there is no end to the infiltration of soy in the American diet.
On a good note, Isla seems to be doing well so far on the new super duper soy and dairy free diet.
Tonight Isla is sleeping in her own crib in her own room for the first time. (She's been using this crib for naps until now and sleeping in her pack and play in our room until now.) I am so sad! I miss her already and I'm not in bed yet!
Today I learned how to change a diaper, remove poopy shirt and wipe up and dress a (no longer) poopy baby while she is spitting up on my leg in an airplane bathroom - welcome to the new and stinky mile high club!
I also learned that my prenatals have soy in them. Awesome...there is no end to the infiltration of soy in the American diet.
On a good note, Isla seems to be doing well so far on the new super duper soy and dairy free diet.
Tonight Isla is sleeping in her own crib in her own room for the first time. (She's been using this crib for naps until now and sleeping in her pack and play in our room until now.) I am so sad! I miss her already and I'm not in bed yet!
Saturday, July 11, 2009
Happy 5 Months!
Isla turned 5 Months old on Friday! 
She's almost 15 lbs now and is a delight 99.99% of the time!
The most exciting development is her sleep...As I mentioned earlier, we are trying to wean her swaddle and yesterday she slept for the first night with both arms out. 
When I was singing her good night songs she waved her right arm like mad (it had never been "free" before) and I thought for sure she wouldn't fall asleep, but 5 minutes later she was sleeping soundly. Tonight - same story! Sleeping with her arms free couldn't have come at a better time...on Friday Isla started rolling over during her sleep with one arm swaddled. Now at least she'll have both arms out to reposition herself if she rolls on her tummy. 
When I was singing her good night songs she waved her right arm like mad (it had never been "free" before) and I thought for sure she wouldn't fall asleep, but 5 minutes later she was sleeping soundly. Tonight - same story! Sleeping with her arms free couldn't have come at a better time...on Friday Isla started rolling over during her sleep with one arm swaddled. Now at least she'll have both arms out to reposition herself if she rolls on her tummy. 
We still have some issues (like the new night waking that is happening at 1am), but overall things are great (knock on wood!).
Now if only Mommy and Daddy went to sleep when Isla did...we wouldn't have moments like this...
Isla is becoming more social everyday! At our Mommy lunch on Wednesday she and Ethan rolled on their tummies and just looked and looked at each other and then started grabbing each other's faces. So, so sweet! On Friday we visited Noah and Rachel and even with a 13 month age difference, Isla and Noah had fun. Noah acted silly and Isla watched him with wide eyes. She also spent about 40 minutes relaxing in Noah's little pool.
Today we went to Heather and Casey's wedding reception and Isla enjoyed walking around in Daddy's arms and socializing. She is handling crowds much better. Also her hair is getting long enough (in front only) to wear these sweet tiny bows from Baby Michael's Grandma!
Unfortunately she is still having some tummy issues. Lots and lots of "muddy" (well, neon green) diapers and some bloody ones too. I've been dairy free and avoiding soy for a month, so now I'm going on a 100% soy free diet (soybean oil and soil lecithin are in EVERYTHING! No more diary free chocolate chips or joejoe's! Really, no more chocolate! Boo hoo! ...actually it hasn't been as hard as I thought...the hardest part is eating out or at other people's houses and going to weddings where there is an ice cream cart and a mountain of gourmet cupcakes!) We have another appointment in a week. If things don't improve the next step is a trial of a special hypoallergenic formula. I do NOT want to switch to formula, so I'm hoping this will work. I went to an amazing nursing support group on Friday and the nurse leading the group gave me a lot of information and is going to have a pediatric dietitian visit Isla to help us.
Last (but definitely not least) I have only 2 more lbs of baby weight to go. Now I know that 5 months is a long time to lose the baby weight, but now that I'm almost there I don't mind sharing that I've lost 50 (YES 50!!!) pounds (well 48 lbs, since 8 lbs was Isla). (That means 52 lbs total of pregnancy weight gain! Eating my way through morning sickness that lasted until 38 weeks certainly left a mark!) I still don't fit into a lot of my old clothes, but after talking to some friends with 1 and 2 year olds, I've learned that even after losing the weight it takes time for everything to return to normal. I do feel 100% healthier and more comfortable than I did 5 months ago. Thank you Grandma Helen for the great weight loss advice! It was my inspiration!
Tuesday, June 16, 2009
Thank goodness for family and friends!
After posting the other day about going dairy and soy free, I have received so much advice and support from my family and friends.
I have a couple friends who are wheat free and they were able to commiserate with me, but the greatest help came from my sister in law, Nell, and my friend Katy. Nell had milk soy protein allergy(MSPA) with two of her little boys and Katy doesn't drink dairy.
Within hours of posting I had e-mails filled with information about where to find food, how to satisfy a sweet tooth (Oreos are dairy free!), what stores to shop at, how to substitute dairy in baking, what words to look out for on nutrition labels, when to test a new food product in my diet, what to expect with Isla after starting the diet, and a lot more.
THANK YOU!!!
I can't tell you how empowering and anxiety reducing this information is! I am still mourning butter (I think it is my all time favorite food), but things are looking up!
Armed with all my new info Isla and I hit Trader Joe's yesterday and loaded up on dairy free breads and cookies and milk substitutes (I actually need to reign in the junk food or I'll be eating more than I did before starting the diet).
Yesterday I converted a cheesy cornbread pie recipe into a dairy free cornbread pie and it turned out really good. I also made a fresh strawberry pie and a cherry pie (homemade pie crust is dairy free). (See what I mean about cutting back on junk food!)
An added bonus, almond milk comes in chocolate flavor that is almost indistinguishable from chocolate milk (especially when heated with a little cinnamon). Since hot chocolate is my breakfast staple, this will be a great alternative! (An added, added bonus is that it is made by Blue Diamond - Go CA Almond growers!)
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