New here with questions

[spedmomof4]

New here....My name is Rebecca. Our family is adopting a boy from fostercare who, after reading his epic medical file, we suspect has had a corn allergy his entire life, and at almost 12 is now profoundly failure to thrive....is adult height but weighs the same as the average 6 year old. Since he has not had strong advocates in his life his FTT was always attributed to his neurological condition, but the symptoms scream food allergy to me. Since he is g-tube fed and never orally advanced beyond stage 2 baby food told me it had to be something in the formulas something all formula has in common so I came to the conclusion that the most likely culpret is corn. After much research I did find a pediatric formula that can be used for enteral feeds that is corn free, just one, and are waiting for all the hoops to be jumped through so we can bring him home and try to convince our GI doc and the nutritionist to prescribe this formula and see is we can get him to put on any weight. Anyone with experience with a non-verbal preteen with a g/j tube and a severe corn allergy?

[Mfamom]

Welcome Rebecca!! 

[rebekahc]

Hi Rebecca and welcome!

No experience with your exact circumstance, but I do have a DS (age 15 now) who had a severe corn allergy as a young child and a dx of FTT at age 4.  He has continued weight issues (he's 5' 9" and maybe 90 lbs. on a good day).  His corn allergy caused malabsorption and intestinal damage.

I would suggest having allergy testing done to confirm the corn allergy before you jump through hoops to get his formula changed, though.  If he is corn allergic, it's important to be aware of all the places corn can lurk - diapers, facial tissue, medicines, food packaging - and that's an important one because it does not have to be labeled, so even the new formula could contain corn even though it's not on the ingredient list - corn starch is sometimes dusted on the insides of cans, corn oil can be used to coat the insides of boxes, plastic can be made from corn...  Most of the -ose ingredients (dextrose, fructose, etc.) can be corn derived.  Oh, also IV solutions.  When DS was little most had corn derived ingredients (especially dextrose) but lactated ringers was ok.  His medical alert bracelet even said 'no dextrose IV - lactated ringers only' because that's something they needed to know right away before/if they took the time to call Medical Alert for more info.

I'm going to split your post from this Welcome topic and make it a thread in the Main section of our board so that others will more apt to see it.

[CMdeux]

I'm so glad that Rebekah has such great practical advice for you.  I second the exhortation to be sure to consult an allergist-- a FOOD allergist, that is-- before making a lot of changes.  FTT alone isn't always (maybe even "often" in the grand scheme of things) related to IgE-mediated food allergies... can be celiac, other kinds of intolerance, or other metabolic conditions altogether.

  It sounds as though you have a GI doc and nutritionist that you have a good relationship with, which is fantastic.

Getting to the bottom of it may be complicated, certainly-- but it will totally be worth it to know what is (or is not) going on.  What a lucky boy he is to have found your family!!    

[TabiCat]

I'm also seconding a visit with a food allergist. Take in all the information you have gathered as to why you suspect corn and get full testing. Keep in mind that if he has one allergy he is likely to have another. Also food can cause problem that are not technology allergies and need to be addressed appropriately.

[TabiCat]

Congratulation on your pending adoption.

I understand from your post that he is not yet home with you I hope he will be soon.

____________________

If you have worked a lot with other non verbal children or those with other language development problems you will know that getting accurate medical diagnosis and treatment can be a bit challenging because they can't tell us what is going on with them. I am glad he has found strong advicates to keep looking for answers.

[GoingNuts]

Welcome Rebecca!  So glad you found us. 

Rebekah gave you great practical advice, and I second getting in to see an allergist who really knows food allergies before making changes.  I don't know where you live, but if you don't know of a good allergy practice near you, we'll be glad to help point you in the right direction.

You are doing a wonderful thing for this boy.  It sounds like you are knowledgeable about the issues with medically fragile children, and the day he comes home to  you will be the best day of his life.

[spedmomof4]

Thanks, I absolutely will be consulting with a food allergist. Since I come from a family with Celiac disease, it was easy to make the connection of the symptoms to the possibility of an allergy. You are very correct, with a non-verbal child it is extremely difficult to know what exactly is going on. Lucky for all of us involved I have had great training being the parent of a biological son with  a severe neurological condition who is also non-verbal and a wonderful team of doctors we regularly consult with and I have learned to trust my instinct as a mom....ever heard the saying "a worried mom does better research than the FBI" I have been there so many times in my life, and I am so anxious to get this child home so we can start to figure this out. Thank you for all your advice and support. This child has been FTT since he was just a few months old, and the only time his symptoms decreased where when his bio-mom desided to feed him only rice and water. And all the pediatric formulas he has been on to date have been gluten free. He has had some food allergy testing early on but I am still trying to find any conclusive results to what they tested him for (milk, eggs, etc. just the very basics).

[AllergyMum]

Welcome.  Sorry that you might be here joining us.

My son was failure to thrive prior to the identification & removal of all allergies from his diet.  Once all was identified, he slowly started to turn around and gain some weight.  He is still a very thin child but very healthy and no longer failure to thrive.

COngradulations on the adoption

[AllergyMum]

Just wanted to add that it seems like the majority of our kids who have allergies to things other than nuts all tend to be thin. Lack of most processed food may be a contributing factor in my opinion.

[spedmomof4]

My bio kids who do not have food allergies (that we know of) are all very thin, but they also rarely get any processed foods. We grow a garden, raise our own chickens/eggs and mostly eat whole grains and superfoods and almost always prepair our own meals. Oh, and they play outside most of the time, not indoors on the video games, unless it is dancing on the kinnect

Thank you all for the advice. I hadn't really thought about corn in his diapers and he is too big for gDiapers so I may have to research another option....now what about platic products like his feeding tubes and feeding bags which are all in contact with him or his food? Or his meds for his severe eczema? Laundry soap? lotions? etc.

[CMdeux]

Exactly-- you're thinking about all the right stuff.     Unfortunately, experience leads me to understand that you'll be hard-pressed to chase down clear answers from manufacturers of even FOOD items (if the allergen is non-top 8, that is) and it'll occasionally be close to impossible with non-food items, particularly medical/specialty things.

This is why you are definitely going to want some help from a really excellent allergist before you try an elimination of corn products.  Because if he is allergic, you should see quite specific improvements related to removal...  but (and it's a really, really BIG 'but') only if you don't miss or overlook a source of it.

With corn, that is just such a tall order.    Seriously.  I've been doing this for over a decade and I think that it would be extremely difficult even for me to completely remove corn products.  I'm very sure that there is something that I'd overlook.

Corn is (thankfully) a quite rare IgE-mediated allergen.  Good thing, too, since I cannot think of one more difficult substance to avoid in North America.    You are on the right track with your thinking-- consider everything that touches the person or his/her immediate surroundings as well as everything that is a source of internal exposure... then start making phone calls about ALL of it. 

[rebekahc]

When we first found out about DS's corn allergy, this is where I started.  I'm not sure how current the information is, though.

http://www.vishniac.com/ephraim/corn.html

And this is the other source I relied on, but because true IgE mediated corn allergies are so rare, I really had to take the advice and opinions with a big grain of salt - many of the people there tended to have "intolerances" rather than true allergies.  Again, haven't looked there in years, so it may have changed.

http://forums.delphiforums.com/n/main.asp?webtag=AvoidingCorn&nav=start&prettyurl=%2FAvoidingCorn%2Fstart%2F