Posted By Posting
Aug 27, 2008
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
Visit w/the Allergist
Informative and very supportive but not a great visit! We had her allergy testing done over a month ago and they couldn't get her in to do the consult until Sept. 10th. After the reactions we have had in the past week or so they brought us in early.

The verdict, Adriane has 9 severe/anaphylactic food allergies. She doesn't have contact allergies on many of them, which is good. She can at least go out to restaruants with us. Basically her reactions will become more severe the more she is exposed to them. Here is the list - Milk, Eggs, Wheat, Corn, Oats, Rice, Nuts and Beef

I have all kinds of info on Milk-free, Egg-free, and Corn-free diets. I haven't looked into the nuts and all the others. The good news is that we use ground turkey and chicken, which she has a mild allergy too but we are hoping that she will be able to tolerate one or the other. Her moderate allergens are Turkey, Chicken, Barley, squash, peaches, apples, avocado, cantaloupe and bananas. The the mild ones are soy and pork. She had a reaction to everything that they tested her for. So, therefore, we are going to have to go back and test others in a few months. So far, we think that green beans, carrots and peas are safe. I am going to try and keep giving her turkey and see how she does. The other options are beans. If you guys have any recipes or anything to help me transition my cooking and make the house and dinner table more safe please let me know. I think all this is suddenly sinking in and feeling a little overwhelmed.

My smart allergist tt the GI because what she normally does for a child with this many allergies is pull her off all food for a month or two and do only formula. Given her feeding issues and GI problems they decided that we didn't want to set her back by keeping her from eating. I was happy to hear that. We had to go and buy several more epi jr. and now an oral steroid. We have an emergency kit at the babysitter, home and with her at all times. Sorry this is so long! I hope you made it through it. -Amanda

Aug 27, 2008
mdbarbagallo
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
Hi there. I am so, so sorry to hear about your little ones long list of allergens. That is quite a list. I am extremely dismayed ot hear, though that your allergist's offcie couldn't get you in for a consult for a MONTH and only brought you in early because of the reactions! That is absolutely ridiculous and completely unacceptable. I have never heard of such a thing. Even our crap allergist (the first of the three...the second two have been incredible) gave us results within a few days (the same days the results came in) and did a phone consult right away. That is terribl eo nyour allergist's part.

I also cannot believe your allergist told you which are anaphylactic and which are "safe." ANY allergy can become anaphylactic at any time with repeated exposure...including the "safer" allergens. Please consider chicken and turkey dangerous, as well as soy and pork. With an allergy, no food is safe. Not even in small amounts...EVER, or until the test shows 100% no chance of allergy. Food sensitivities are a different story, but allergens need to be avoided at all costs.

Sebastian is waking up from his nap, but I'll post more later. You aren't alone. I and many others can help you. Hugs to you and Adriane.

Aug 27, 2008
rissaroo
Picture: This is what happens when you raise a kid on health food and they get ahold of a Coke! Bad mom, that soda is NOT on the reflux diet.
UPDATE: Isaiah is now 12 and off meds! He is doing great, eating again and hopefully will be catching up in the growing department. I am still in the "hoping it sticks" phase, but we're so happy that he's better!
(((hugs))) to you, I am so sorry about all those allergies! Wow, that's going to be tricky. Hopefully she'll out grow most of them...one thought, if she reacted to *all* of the things they tested for, did they do a trial test to make sure that she's not one of the people who just have a reaction to the test itself? Apparently some people have a larger than usual reaction to the test itself (just a plain scratch or prick will swell up), and that makes it a little iffy trying to read the other reactions. You might want to call the allergist and confirm that they did that...otherwise, there could be some false positives in there. I agree with Melissa, I think I'd be looking around for another allergist, at least just to get a second take on all this. (((hugs))), I am sure this is a lot to take in!
Aug 27, 2008
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
Before we did any tests we did a scratch test to see what reaction to compare it too. So, they are all pretty accurate. I'm not sure what else to do, other than to avoid those allergens. I am having additional testing done and we are goign to be doing sensitivity testing also. We will see what comes of this. - Amanda
Aug 27, 2008
rissaroo
Picture: This is what happens when you raise a kid on health food and they get ahold of a Coke! Bad mom, that soda is NOT on the reflux diet.
UPDATE: Isaiah is now 12 and off meds! He is doing great, eating again and hopefully will be catching up in the growing department. I am still in the "hoping it sticks" phase, but we're so happy that he's better!
Oh, bummer. Yup, you're right...avoiding the allergens and additional testing, and time...pretty much all you can do! Rats. At least you know what you're dealing with, though...that's a start! (((hugs)))
Aug 27, 2008
mdbarbagallo
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
Hi again. Our GI and allergist took Sebastian completely off food for at least three months, but his story is a little different than yours. He had so much damage from months and months of contamination (our two allergists concur that his reactions go back to when I ate eggs three days after he was born and then nursed him) that he got to the point where he was tolerating NO FOODS, even the ones to which he tested negatives and to which he had done fine before (all TWO - sweet potatoes and pears). If you know what was causing the reaction and if your daughter isn't having health issues (e.g., she is doing fine on food now that the allergens have been removed), then I don't see why she would need to be taken off foods. If she starts having problems like Sebastian did, though, it might be something to look into. I figure we are gonig to have feeding problems either way because we were having them before. Our allergist (Dr. Robert Wood...google him. He is amazing and considered the top in the country and one of the best in the world, thank God. ALL of Sebastian's cousins (his generation) have food allergies, and all go to him with the exception of my niece, who sees the allergist who referred us to Dr. Wood when he realized Sebastian was on a whole new level than he was used to treating)...our allergist is going to have us start with a clean slate after Sebastian's first birthday...we will be sticking to mild fruits and veggies for a looong time - introducing one every 2-4 weeks - and our plan is to get him eating as "normally" as possible - meaning keeping down foods he is not allergic to - by his fourth or fifth birthday.

Not ideal, I know, but it's what Dr. Wood believes will work for our son. He sees a 12-year-old patient that was just like Sebastian when he started treating him at 18 months. After total allergen avoidance and SLOOOOOWWWW food introduction, the kid is allergic to only peanuts and shellfish (which are lifelong anyway. I am allergic to shrimp). I developed a pepper allergy in recent years. First, I got hives a few times (did not put 2 and 2 together). Then my tongue and lips started swelling later down the road...now I have to avoid them completely because I am entering anaphylactic territory. That includes any contact with them. I am just surprised that Adriane is not contact reactive to those foods labeled anaphylactic! Sebastian's most serious allergens - eggs and nuts - will cause a reaction if I COOK them and he breathes the air.

One of Sebastian's cousins has a walnut allergy, and his dad ate some walnuts, then washed his hands and brushed his teeth. He apparently had walnut dust on his shirt or arms or something. Sebastian's cousin ended up in the ER in complete anaphylactic shock and almost died. No nut ever touched his lips – this was strictly a contact reaction.

I really don’t mean to be nosy or sound like a know-it-all. It’s just that my extended family (and obviously, my immediate family) have been so affected my food allergies, and I have seen firsthand how dangerous and frustrating they can be. We saw a crap allergist early this year who told us that Sebastian – even though he had SERIOUS reactions to it – could go ahead and have Similac. I told him I was scared to do that given his history, and the allergist told me that people are scared to drive on the highway, too, and they never get anywhere in life. I tried meeting him halfway and gave Bassy Alimentum, and he had terrible diarrhea, cramping, face rashes, eczema, and pain for WEEKS. He is now so sensitive that he had a week-long reaction to trace amounts of milk in the flavoring of his sinus medication. This is an allergen he is “negative” to – when in actuality, Dr. Wood told us, he has a Type 4 non-mediated response. Every time he is exposed to milk, his allergy becomes more and more severe. It can easily become a Type 1 allergy and become anaphylactic because he is such an allergic kid.

I don’t want to see anyone else’s child go through what we are going through. It doesn’t hurt to get a second opinion. I am just a bit scared of the advice you are getting, and you obviously love your child more than anything. The FAAN website has tons of info about limiting exposure to allergens, and it also has lists of what foods to avoid when there is a specific allergy. That should help with the menu planning.

You probably already know about things like Ener- G egg replacer…how hand sanitizer doesn’t kill allergens on hands – it just cleans the dirt but leaves the egg or nut or whatever else there…to avoid high chairs in restaurants because they never, ever clean them…that places like Chick-fil-a cook their chicken/fries/etc in peanut oil and soak their chicken in a milk wash…

If I can be of any help, PLEASE let me know! I really would love to help however I can. You’re no tin this alone!

Aug 27, 2008
mom2coy
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
i can't imagine what you are all going thru with these serious food allergies. coyle reacted badly to a teeny bit of yogurt @ 7.5 months. now @ 11 mo. he is tolerate dairy just fine. in fact, his reflux is worse now on from formula & juice then solids! i'm so lucky and was afraid that i would have to deal with avoiding all sorts of food. i cried because of the reaction to the yogurt :(...

i wish you the best and am glad melissa is on here to help out. she does have the best allergist in the country. just to get it straight tho, which tests were done? both the scratch and the rast? how can they tell which is contact/not contact?
Aug 27, 2008
kmom
Worry Wart mom to
27 mo. reformed "happy spitter"
34.8lbs , 37in tall(oct)
Diagnosed A/R at 6 wks
Zantac until 1yr then Prevacid
Med free since February 08
peanut & egg allergies...still
Zoo Boo Trick-or-Treating (pic).
Yowza! Give everyone in her life an epi-pen for christmas! I am sorry to hear about this. Maybe she'll out grow some of them. Is that tree nuts and peanuts?

There are some good books out there. Google food allergies and they come up. I know it seems overwhelming at first, 'cause it is, but you get a handle pretty quickly. I have found that employees in restaurants are really good about answering questions about their food. They don't want an anaphaltic "scene" anymore that you all do. I use their fear to my advantage and ask to see lables and to question the chef.

On the bright side, now that you know you can act. It's always a double edged sword with dxs. Good luck, you can do it!
Aug 28, 2008
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
Okay, I am feeling more and more overwhelmed. As some of you may recall, she has had horrible feeding problems. Stopped eating for weeks or more at a time. So, now that she is finally eating I hate to take it away from her. On the other hand, she is getting worse. She has had worse diarrhea, hives and excema than ever before. Well, maybe not worse diarrhea but close. Her hives and excema are awful and making her skin crack and scab over. The wheezing kicks in at least twice a day and I give her breathing treatments and it gets a little better. My babysitter says that she thinks more of this could be enviromental, because of how bad mine and Morgan's asthma have been lately. The problem with that theory is that she tested negative on all her environmental triggers. Which is normal at this age, I'm sure she will develop some since Morgan and I have severe environmental allergies.

I think I would love to get a second opinion. My allergist is one of the best in the state and deals with immunology also. Of course, the infectious disease guy tells me that she doesn't have an immunology problem. The problem being that she is in the same office as our doctor. Plus, she takes forever to get new patients in. Especially since I haven't seen her in more than a year becuase I have been too busy taking care of the girls.

These are the best in our area. probably in the state. We have considered going somewhere else but the money and time that that would take isn't there. Dr. Wood is at John Hopkins, right? I called the docs office this morning about how things are getting worse. I just don't want to take the food away and then she stop eating all together. When you took the food away and did all formula Sebi was quite a bit younger, right? She is 15 months with a history of feeding issues. I have avoided the feeding tube for 15 months and thought things were getting better and now this.

Check with your
doctor first!