My Cousin's Kids Test Results Are In

[schuyler]

For those of you who don't know, I am guardian of my cousin's 3 young boys (ages 2, 3,and 4) while she is in Iraq. I was diagnosed with celiac in Jan, and not long after, I was convinced that her middle son had celiac. At the time, he was 2.5 years old, and around 20 lbs (at 38 inches tall). After lots of setbacks (drs not cooperating, and my cousin being shipped overseas), I was finally able to have my cousin's kids tested through enterolab.

The results came in this morning, and the oldest and youngest tested positive, but not Matthew (the one I was convinced had celiac).

All 3 of the boys are starting a gluten-free diet, because I know that testing in kids is unreliable. My dr also tested them the other day for other food allergies. All 3 of the boys tested positive for allergies to the following: wheat, corn, eggs, casien, soy, and peanuts. They are also lactose intollerant and don't tollerate anything acidic or spicy due to acid reflux.

They do love most fruits and veggies, and are not picky eaters, but I don't know what to feed them or what ingredients to look out for in regards to their other allergies. Any help or food suggestions would help alot.

Also, I'm not sure how to tell if kids have been glutened. Matty is the only one with symptoms that I can be sure are from gluten.

Nicolas (4 yrs), has lots of anger issues, but I'm not sure if it's due to having a dad who hates him and a mom who is out of the country, or if it's from gluten. He is on the light side at 34 lbs and 44 inches.

Matthew has horrible episodes of crying uncontrollably due to stomach and body pains. He also has episodes where he just zones out and is unresponsive. He also has horrible night terrors. He is currently 19 lbs and 39 inches (a 5 lb loss since his 1st b-day). I just got back from taking him to the dr, and the dr wants to put him on a feeding tube, but is having trouble finding a formula that is free of all the allergens.

Sean (2 yrs), had some symptoms when he was a baby (eye twitches), but hasn't had any issues, other than severe reflux, for awhile. He was also a 1 lb preemie, so his reflux could be due to that. He is 31 inches and 19 lbs.

I'm hoping that after a few weeks on the diet, I will be able to tell which issues are related to gluten or other food allergies, and which are behavioral or preemie related. But what if they are just asymptomatic celiacs, how will I know if they've been contaminated?

I am still really clueless and need lots of help.

I'm sorry this is so long, but I don't know who else to turn to for help.

Anything would help.

TIA

Danielle (and Nic, Matty, and Seany)

[mouse]

Boy Danielle, you have your hands full and at 20 years old. Your nephews and sister are so lucky to have you. As far as the diet, I have most of the allergens you have named. I read EVERY single label as corn is in more things then gluten. I get many of my allergen free cooking items at a heath food store. Like I use Muir Glen tomato sauce, etc. as the majority that I have found in the regular store have corn in them. I would use fresh veggie, fruit, etc and I am sure you will figure how to get around the allergens. You can buy Vance's immitation milk on line and that is what I use. I make my mash potatoes with it and add a roasted garlic flavored olive oil in place of butter or marg. My husband loves them that way. I use the Vance's on my cereal. I use Barbara's puffins honey rice cereal. It is really good. Vance's does have corn in it, but if you read their website, they address the corn. Because of the way it is processed out, the majority of corn allergy people are able to tolerate it. Corn is a very bad allergen for me and I have had no problem with Vances. They also make a choc. milk which I also like. These come in powered form and you mix it up.

I am sure that people with children will have many more suggestions then I do.

[chrissy]

wow!!!! you have your hands full at such a young age----i am impressed with your obviously giving nature. maybe once the boys are gluten free for a little while some of the other allergies will clear up. there is a web site called the allergy grocer that i think would be helpful for you. you put in all the allergies you are dealing with, and they tell you what products they have that are safe to use. enjoy life also has products that should be safe for the boys to use. good luck!

[Gcbec]

Wow, You sound like a wonderful Aunt they are lucky to have you. I will pray for your sisters safe return as well. When my son had G-tube he was also allergic to everything he was on Amino Acid Formula called Neocate. Ask the Dr about it I hope it helps.

CIndy

I just looked it up and this is defiatly what your dr needs to look at. Google neocate and read neocate information and take to your dr. I hope it works

[Luvs to Scrap]

Danielle,

I don't have much to offer in ideas but wanted to let you know I'll be praying for you and the boys and this huge diet adjustment you will be embarking on. Your cousins' kids are so lucky to have you and your knowledge about celiac so that they can get help while they are still young. Hugs! Kendra

[TCA]

Wow! Your plate runneth over!!! Know that you'll be at the TOP of my prayer list! I just wanted to offer up a little advice about attacking this huge problem. Why not break it up into little problems. You didn't mention the severity of the food allergies. If they're not too severe, why not start with gluten and dairy free and get a handle on that, then start eliminating the other allergens. Allergy tests on little ones are also highly inconclusive. From what I've read, if something tests negative there is a 90% chance it is negative. If something tests positive there is only a 50% chance it actually is positive. Trying to do it all at once might be a bit overwhelming for you and them. Corn is sooooo hard. I've eliminated each of these before and it can be done, but there's nothing wrong with doing them in baby steps. They've been on all of it up until now. Getting the gluten out of their diet will probably help most of the growth issues which sound like the most pressing. Just my opinion - everybody's got one!

Megan has a feeding tube and is on Neocate because of intolerance issues. She has only had positive RAST testing for milk and eggs and everything was negative with skin testing. She just had so many issues with everything, as you know. She's on Neocate 1+. It mixes at 30 cal/oz where the infant formula mixes at 20 cal/oz. We dilute it for her to 25 cal/oz. There's also a Neocate Jr. and some form of it that comes in juice boxes. Please let me know if I can help you any with the tube feeding stuff. I'm better versed than I ever wanted to be on that.

I know a lot about infant formulas and ALL of them have some form of corn syrup solids except alimentum Ready to feed in the can, but it has casein in it. There are formulas for older kids, though, like the Neocate 1+ and other products. I know of one child with a corn allergy that was able to tolerate Peptamen (sp?) Jr. We haven't tried this yet, but it's probably the next step for Megan. It's Predigested and easy to handle. The Neocate is in amino acid form. There is also something called Compleat Pediatric that we tried and failed, but it's whole foods that are blenderized. It too has corn syrup solids, but none of the other allergens you listed.

You might want to join the Parents of Food Allergic Kids (POFAK) forum. They helped me a lot with the Neocate stuff when we were floundering so. Cheri A. is a member there and helped me get on there.

Please let me know if I can help in any way! You're awesome, BTW!!! HUGS!!!!!!!!!!!

Love,

Tanya

[schuyler]

Thank you so much for all the advice!

I'm starting to calm down, and I think everything will go well.

We just got back from the health food store, and bought some "safe" things for the boys.

Tanya, I really like your suggestion about attacking things one at a time. Gluten, dairy, and corn seem to be their worst allergies/intollerances, so I am going to eliminate those things first. I have a feeling that once those foods are gone, everything else will get better (hopefully).

I'm going to print out the list for formulas, and take them with us to the dr on Monday, so hopefully we'll get Matthew (and maybe Sean), on something soon.

Thanks again!

Danielle

[Eeyorific]

like others, all I can say is WOW!! I thought we had it hard!! I'll spare details, but I may be able to offer a slight bit of help... (not much I'm afraid)

My almost 4 yr old celiac son is also free of ALL dairy/casein as well as being corn and refined sugar free. You mentioned that one has anger issues. With *my* Matthew, this is due to the corn. He gets a rash too, but mainly ALL form of corn affect his behavior.. Have you checked out this link Open Original Shared Link

Now, be warned, the "avoid" list is rather overwhelming, and in our home, we just can't follow it completely. As it is, he's on 3 different kinds of medication which all contain corn You just do the best you can. I do agree with taking one out at a time, also, try keeping a food log, to log which food is causing which reaction.

We're still having alot of problems with our Matthew, as it is, his Ped. is sending him to be evulated for PDD (form of Autism)

My prayers are with you and all 3 boys. They are blessed to have you! And so is their mom

[schuyler]

Things have changed so much during the last few days!

The boys are currently off of gluten, corn, and dairy, and I'm limiting sugar (3 sugar-filled boys are too hard to deal with) and soy.

Yesterday was the first day where there was no anger in any of the kids. Of course they still had their normal sibling arguments, but what kids don't? Nothing got worse than that, which amazed me. Usually I would have to deal with Nicolas (the 4 yr old) kicking, screaming, biting, hitting, telling me he hates me, that or yelling profanity (which he picked up from his dear dad). There was none of that.

We just got back from the hospital, and Nic was put on Neocate 1+, but they have not decided what to put Matthew and Sean on yet. Right now, we are just Nicolas is being fed through a NG tube because the docs don't think he'' need the extra calories for long, so they don't want to put him through surgery.

Eeyorific, thanks for the link. I've printed the info, and I'll add it to our other avoid lists. btw, your son has a great name!

Danielle

[TCA]

The Neocate tastes terrible, so don't try to get him to drink it. There are flavor packets you can get, though. You might also want to consider something called MCT oil. You can use it in cooking or to supplement things, like applesauce. It is easier to digest and will help the kids gain weight. You need a script for it. I'm soooo glad to hear about the already positive improvements!!!! God is so good! You're in my thoughts and prayers constantly. Please let me know if I can be of any help. I have some extra NG tubes I'll be glad to mail you so you don't have that expense. Meg has the GJ tube now and doesn't need them. Just PM me your address if you want them. I can look at the size on them if you need them.

FYI, the Neocate 1 + has been stopping up Meg's feeding tube pretty bad. I've started running it through a fine strainer before putting it in the pump. She has the Flexiflow Companion. It might be fine with yours, just keep that in mind. Let me know if I can do ANYTHING at all!

[TCA]

I just wanted to see how the kiddos are doing. I hope you're still seeing lots of improvements!

Hugs,

Tanya

[schuyler]

Sorry I haven't updated for awhile; the kids have been keeping all of us busy. I am so lucky that I still live at home and that my family is extremely helpful.

Anyways, the boys are doing well for the most part. We decided to hold off on the feeding tubes for the time being. The doctor wanted to give them a chance to try gaining weight without one. So far, so good. They have not gained much, but they aren't loosing either. Their behavior problems have improved alot. They are much happier (except after their visits with their dad, but that's another story, some of which is below). Nic, who was close to being thrown out of preschool, has not had nearly as many problems there. He went from having meltdowns everyday where he was screaming, kicking, biting, hitting, etc., to only having two minor temper tantrums during the past 2 weeks. They still have a ways to go, but they have made huge progress lately.

The only issue that I am having is with their dad. He has unsupervised visition 2-3 days a week, and he sees no reason to keep them on the diet. He is one of those people who thinks that they will build up a tolerance to things if they keep eating the food. Everytime they go with him, I send them with meals and snacks, but he won't let them eat the food. I even bought a whole bunch of food for the boys to keep at his house so that he could prepare them food in case he wanted to, but he just threw it all out. The first 2 days that they went with him, they ate the food that he offered, and ended up really sick (and the day after each one was when Nicolas had his temper tantrums at school). Ever since then, the older 2 have refused to eat food that he prepares ( the youngest still eats whatever he's given because he's too young to know better). The boys dad is extremely stubborn and won't listen to me or the doctors, but I'm thinking that he might listen to the courts. We go to court in a few weeks, and I am going to present this to the judge, because I believe that it is abuse. I am just worried that I won't be taken seriously since only 2 of them tested positive through enterolab.

I will keep everyone updated.

[jerseyangel]

Wow Danielle--you're doing such a great job with the boys! Such good news about the weight and the improvement with behavior.

You're right about their dad, though. I agree that you should bring this up in court. Be clear that you supplied him with gluten-free food for the children, *and he threw it away*. That goes beyond him being able to say that he didn't know any better or something like that.

Can you get statements from the teachers who are reporting to you the improved behavior? That should certainly help you convince the judge that their diet makes a difference.

I wish you luck with everything. At such a young age yourself, you've taken on a great deal of responsibility--you're making a real difference in the lives of those kids

[hannahsue01]

Sorry I haven't updated for awhile; the kids have been keeping all of us busy. I am so lucky that I still live at home and that my family is extremely helpful.

Anyways, the boys are doing well for the most part. We decided to hold off on the feeding tubes for the time being. The doctor wanted to give them a chance to try gaining weight without one. So far, so good. They have not gained much, but they aren't loosing either. Their behavior problems have improved alot. They are much happier (except after their visits with their dad, but that's another story, some of which is below). Nic, who was close to being thrown out of preschool, has not had nearly as many problems there. He went from having meltdowns everyday where he was screaming, kicking, biting, hitting, etc., to only having two minor temper tantrums during the past 2 weeks. They still have a ways to go, but they have made huge progress lately.

The only issue that I am having is with their dad. He has unsupervised visition 2-3 days a week, and he sees no reason to keep them on the diet. He is one of those people who thinks that they will build up a tolerance to things if they keep eating the food. Everytime they go with him, I send them with meals and snacks, but he won't let them eat the food. I even bought a whole bunch of food for the boys to keep at his house so that he could prepare them food in case he wanted to, but he just threw it all out. The first 2 days that they went with him, they ate the food that he offered, and ended up really sick (and the day after each one was when Nicolas had his temper tantrums at school). Ever since then, the older 2 have refused to eat food that he prepares ( the youngest still eats whatever he's given because he's too young to know better). The boys dad is extremely stubborn and won't listen to me or the doctors, but I'm thinking that he might listen to the courts. We go to court in a few weeks, and I am going to present this to the judge, because I believe that it is abuse. I am just worried that I won't be taken seriously since only 2 of them tested positive through enterolab.

I will keep everyone updated.

It sounds like you've been doing a GREAT job with these boys. They are lucky to have you in there lives. I'm glad to hear that the diet is helping them. I personaly wouldn't think the boys will gain allot of wieght with the damage still being done when they visit there dad. All of us around here know that staying on food with gluten in it can continue to do allot of damage. I think your doing the right thing by taking there father to court. I would do the same thing in your place. It's kinda like not giving a diabetic kid the right diet or there insulin......it would make them sick. Keep up the good work and good luck in court!!!

[schuyler]

Thanks for the replies everyone.

I really like the idea of getting letters from their teachers about their improved behavior. I'll talk to the teachers about it tomorrow so that they can get it done before we go to court. Their dad hasn't taken them for visitation since last Thurs, so they have been off gluten for a few days in a row, and they are so much happier and easier to be around.

[Nancym]

You might also want to get something supportive from the doctor, just so the judge doesn't think you're being random about it.