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Yes. This is especially true on a vegetarian diet because most vegetable sources are deficient in certain amino acids - the building blocks of proteins - so you have to eat specific combinations of vegetable sources to get the right proportions.

There is a specialized formula for babies with unusual allergies that has just the amino acids in the right proportions, but in which they are not bound together in proteins. I wonder if the supplement is something like that. It would also need certain fats in it, as there are certain essential fatty acids that the body cannot make for itself.

Many of you have great ideas, and I really appreciate the help. The food allergy disorder that my son has is similar to an Eosinophilic disorder, but instead of his Eosinophils attacking food as if it is an invader, his Tcells attack, causing esophageal lesions, and lesions and bleeding through out his stomach and intestines. He develops severe pain, vomiting, diarrhea, bloating, colitis, and consequently severe behavioral problems. We have been to 4 GI docs, he has had 4 endoscopies and 2 full colonoscopies starting at the age of 4 months old. He sees an allergist/immunologist, a pulmonologist, a ENT, and his GI doc regularly. We received our official dx of the Tcell immune dysregulation at Cincinnati's Children hospital center for Eosinophilic disorders. As far as what he consumes- rice, water, salt, sugar, and Neocate formula. The Neocate is an amino acid based formula, it is considered hypoallergenic in that there are no intact proteins in it, and the allergy is spurred by the protein in foods. His prognosis is not definitive at all. Some kids in their teens have no foods and are formula only via a G tube. Some of the teen aged kids have 10-20 foods. The only way to discover which foods work are to trial the foods one at a time. We however are not supposed to trial foods until he is older, in hopes that his immune system will "rewire" itself. His sensory issues are exacerbated by his food issues in many ways. First, he does not get much input from the pressure of chewing and he does not get to use his sense of taste much. secondly, when he gets a food or has a reaction to foods that we thought were ok but aren't, his whole body freaks out and he is in a great deal of pain and discomfort and can't deal with his surroundings. He prefers to constantly move and have constant noise during these times. As an infant, when he was very ill, he had to move constantly and have continual noise to avoid screaming. He also reacts to many detergents, fragrances, soaps, otc and prescription medications.

Often times we don't know if his behavior is a reaction to a minute amt. of food, or his PDD stuff. Last night my husband got so furious with our son, because he was freaking out about a bath, which normally is something he enjoys. He was scremaing and tantruming, and my husband told me to just put him in the tub, screaming or not. I wanted to reason with him, but my husband said that he's walking all over us, and runs our life. Which in many ways he does, I guess, but yelling/time outs and forcing him to do things just doesn't work. He is extremely stubborn, and I do not like nor want to yell at him, nor do I want to discipline him for things that he either can not control or does not understand. I'm trying to take it 1 step at a time, and right now behavior (yelling, hitting, tantruming, refusal to do anything) is by far our most immediate concern.

Thanks for you help!
Aidansmom

Hi,

1. My eldest was impossible to discipline at that age. Sometimes we'd have to put him in his crib for a time out and he'd just throw his tantrum then fall asleep. We were very gentle with him about it, but he was so hysterical we were worried he'd hurt himself. As he's grown it's gotten a lot easier. He has some severe mood disorder issues. Without those he'd barely have any issues at all. The Asperger's makes him different but if that was all he had he'd be 100% functional with a little sensory help.

2. Yes it gets easier, lots and lots easier. It sounds like you've got a little Aspie there.

3. We are hoping my little guy won't be on the elemental formula. If he does use it it would be short term as part of an elimination diet. He'd do the formula until his eosinophil count goes down, then add foods one at a time to see what triggers the allergies. He's got Eosinophilic Eosophagitus but we can't find what triggers it. So far all the allergy testing hasn't turned anything up. He'd taking steroids and stuff but not getting better. He had his second endoscopy today and we should hear what his cell count is in a few days. The doctor said it looked good in there, no strictures, but that in kids that doesn't always mean much. Once we've got the biopsy results we'll know if it's just really bad reflux causing the pain or if the EE is progressing.

Edited because you already answered one of my questions.

My son also has severe pain all the time. He'll melt down and cry but he doesn't hit or anything. He just turned 9 and has the maturity to handle it with more grace, though the pain is severe. He was non verbal until he was 5 and was then DXd as PDD-NOS. Recent testing shows no sign of any kind of autism spectrum disorder (not saying he's cured, he may have been misdiagnosed one of these times). His two older brothers do have Asperger's, and the middle one has leaky gut.

I wonder if some ADHD could be involved for your son and the hitting is a sign of impulse control issues. His situation is so complex it must be hard to know where one thing stops and another begins. He could outgrow a lot of it. My little guy has been taking Concerta for that but seems to be outgrowing some of the problems. We are going to try cutting down his dose and maybe even getting him off the meds.

Edited again to ask:

What else did they do to diagnose your son's immune system problem? I can't find an immunologist around here to look at my little guy. The Drs say the pain is in his head and that the EE doesn't explain it, just the stomache pain. He's had a lot of blood work and it's possible they've done a test that would rule that out...or not. He does have the eosinophils in his upper GI system but his blood levels are normal.

Kiley: Thats terrible that your doctor would say that your childs pain is "all in his head". I love it when doctors dispute pain because they cant find a reason for it .

aidansmom: So sorry that you are struggling with so much. I was thinking that your son much have some sort of metabolic disorder for him to have such an extreme diet....I hope that his symptoms and reactions improve with age. Do you give him things to chew on? Im sure he has an OT that is doing something to work on those muscles. As far as the behavioral problems, they kind of come with the territory. You might want to remind your husband that your son will only be little for awhile and the more patient and understanding you are now the easier things will get the older he gets. Usually AS kids are easy to reason with (unless in the middle of a meltdown) as they get older when you know how to talk to them. Just remember that they take everything literally so there are certain ways to word things. I know its easy to get frustrated. I have a 5 year old daughter with Autism and a 7 year old son with Aspergers. Ive also raised three other kids with various problems including my youngest from my first three who will be 18 next month, recently diagnosed with AS and severe anxiety.

Alot of the behaviors that you described definitely sound just like my son who is PDD-NOS/possible Asperger's----the obsessions with topics, perseverating, not playing with kids, scripting and memorizing. But it sounds like alot of his behavioral issues may be due to his eating and dietary issues. There has to be a reason that he has these tantrums all of the time. My heart really does go out to you.

Does your husband agree that he may be autistic? It may make it easier for him to understand that sometimes the behaviors are not in his control. I do agree though that you do have to let him know that you are the parents and he is the child, so that it doesn't become him ruling your lives.

I think it helps to read as much on Asperger's as you can. There are many books listed here under recommended reading. I think the more you learn about it, then you will be able to implement some strategies that will help all of you to cope. It sounds like if some of the dietary stuff can get worked out, then maybe some of it will get a little better.

Kiley,
Unfortunately allergy testing will be of no help for the most part, unless they do patch testing, where they smear specific foods on the skin of the back, cover them with a metal plate, for 48 hours. Sometimes this will show a reaction, but sometimes not. The EE paion is definitely not in your son's head. A fantastic forum for EE and food allergies is kidswithfoodallergies. It has been a life saver for me for a couple years. Besides scopes and elimination diets or elemental diets, there is really not much else that can be done. Some kids have relief from the steroids, but only if it's in the esophageous, and not in the rest of the GI tract. As I stated earlier, we go to Cincinnati Childrnen;s eosinophilic center, but i'll warn you, it takes forever to get an apt., after you apply. It is an arguous process, and then even after you have the dx, there really nothing they can do, just eliminate foods, and slowly introduce. As far as the pain, my son becomes a different person when he is reacting. Miserable, miserable, miserable. Do not let the doctor tell you it isn't real, it so is. Unfortunately, many doctors are not that well versed in it. There are also programs in Philadelphia and Colorado for the disorder, if you are closer to those areas. pm me and I can give you more speicifc info and answer more of your ? if you like.

My son is definitely challenging, but more and more I am realizing that God gave him his quirks and issues for a reason, and I simply need to figure out how to work with it all. I finally have his food stuff figured out and under control, now it is the PDD-NOS.

Thanks everyone!

Adan's Mom,

I'm in GA and there is very little here. We have military insurance and can't just go anywhere we want to. There is only one pediatric gastroenterologist for this entire region. There are a couple in Atlanta and there are two individual practices in other far away cities. That's it for the whole state.

I know for sure the pain isn't in his head. He's just not that kind of kid. When we find out the current biopsy results we'll know what the next step is. It might be elemental formula as an elimination diet. A little boy I know has far more serious food allergies than my son does. He's covered in rashes all the time and has a host of problems from it. He can't have elemental formula because the residual proteins in the oils cause him severe reactions. There are a handful of foods that he reacts less to and that's all he eats. Apparently there are only two versions of the elemental stuff one uses soy oil and one uses some other oil. Both of those can cause him to go into anaphalactic shock. He can eat potatoes and a few other things which give him rashes and stomache aches but won't kill him. I suspect he also has PDD-NOS and have mentioned that to his parents (I was running an educational program that he attended so it was my place to do so tactfully and not forcefully).

Philly would be the closest to us, and isn't horribly far from my mom's house, just a couple of hours drive. However, we'd have no way to pay for it unless Tri-Care sent us there and that's not happening any time soon.

They did patch tests on my son and bloodwork as well.

Kylie, we also have tricare, we're at Fort Bragg in NC... Please PM me, I may be able to help with tricare issues.

This is the hard thing, isn't it? When is he just being a little boy who wants his way at the wrong time?

The first thing to realize is that sure, he is running your life right now, but it is not by choice. He has very real needs, and those go far beyond what most children his age have. We don't blame an infant for crying in the effort to get their needs met, so you shouldn't blame your son for acting out to get his needs met. He doesn't have other tools right now, but he will acquire some as he gets older.

Create a predictable structure with simple rules that you know he can follow. Then apply clear, simple and consistent consequences. Once he is very clear on what is expected and how you will deal with him challenging those expectations, you can start to add new layers. Always explain to him what the plan is, and WHY you are making that plan. He may challenge you on the plan, and you may have to explain a few times, but after you've done all you can to make it clear, just stick to it.

Accept that his needs are going to set back the level of what you can expect from him. Don't compare what you do with him to what the mom of a different 3 year old does, and don't expect him to advance on the same time table. Accept that in many ways you remain tied to him as if he was an infant, and schedule respite for yourself accordingly. Remember that he WILL mature and grow and change, just in his own time. There is light at the end of the tunnel - families like yours (and mine ) may not have the luxury of knowing just how long it will take to get there, but you WILL get there, and remembering that makes it a little easier to stay on HIS schedule, instead of trying to push yours.

I guess I'm speaking a lot more to your husband than to you. I think you've figured it out already.

I could probably write a book but I'm afraid I've got other things to get to tonight. Hopefully the above and all the other comments will help you feel you have a little more direction.

Kiley,
Aidan has had patch, skin prick, and blood allergy testing and nothing comes up, because they are not IgE allergies, and therefore rarely come up on testing. As far as going to one of the programs in another state for help, it's not really neccesary. We only went because we did not have a dx, and new it was not EE because of local scopes we'd had. There really is no treatment, so as long as you can get your ped GI to work with you and prescribe an elemental formula, if that is what you think he needs, then that should work. If you do a lot of research, you can sort of devise a plan for managing it yourself, that is what we did before Cincinnati. Neocate makes an elemental called EO28 Splash, which are flavored drink box style elementals. They also make flavor straws which the child sucks the elemental through to flavor it, however these do have tapioca starch in them, therefore the straws are a no go for us, but Aidan loves his juice boxes! If you need help let me know, and definitely check out the forum I recomended, it is awesome!

And thank you to everyone for there wonderful advice. I am going to try very hard to put it all into practice, especially today, because we 60 people coming over for a family reunion.

Thanks Aidan's Mom,

Your sons symptoms are a lot more severe than my son's and I appreciated your help. What is the difference between IgE allergies and the kind your son has? Our ped. gastroenterologist is willing to work with us but it's a slow process. My son had Mono last year and at first his symptoms were attributed to that. It's been more than a year now that we've dealt with this, which is nothing compared to your struggle. This child had other things going on when he was younger, there are many mysteries about his symptoms. Why didn't he talk until he was 5, where is this pain coming from now? Why is he now so socially adpept and not showing signs of ASDs when he seemed so clearly to be in the spectrum a few years ago? They are mysteries, but overall he's doing very well except for the pain.

Kiley-
It sounds like maybe you have experienced a miracle with your son! Sorry he is still in pain though. I know people here believe there is no "cure" for autism, but I have read several accounts of children who presented as autistic as children and then "came off the spectrum" Have you read the book "Son Rise" (sorry I can't remember the author's name right now) It is an amazing story. Many people have said that the child never had autism to begin with, but the parents knew that he did.

The author of the book is Barry Kauffman. I guess there has been a lot of controversy surrounding the story, but I found the book to be amazing.