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Thursday, May 14, 2009

Kiddo's Results Are In ...

To follow up on the last two days of Kiddo info ...

This morning we went to the doctors office together to get the results of Kiddo's patch tests. Good news and bad news ...

The Good News: The patches showed allergies to four foods. Two we already eliminated from his diet based on the skin tests earlier this week: barley and oats. Two others were completely new and unexpected: green beans and chicken. Yup, you read that right - CHICKEN. The reason that is good news is that it explains why the test results kept getting worse and worse as we took more food away - Kiddo was eating more and more chicken! The other good news is that he did not show allergies to beef and pork, foods that were already eliminated from his diet.

The Bad News: 1) He's allergic to chicken ... and that is one of the main foods he eats. We have to get rid of all the chicken-based products in our house and replace them with turkey-based items (if they are even available). 2) We can't add beef and pork back into his diet for at least three months. 3) He has to drink 42 ounces of protein formula per day. Not only does it taste bad but it is ridiculously expensive - the main option is $115 for 27 juice box-sized drinks, and he's have to drink 5 per day. 4) If he can't keep up with the required protein formula he will have to go with the feeding tube, inserted through the nose several time each day or have surgery to put a tube from his stomach out of his side.

On the whole, I am actually relieved by today's appointment. At least we know what is causing the problem now (most likely). At the same time I'm very worried about having to do the feeding tube. They are giving him one week to try drinking the formula, then they will reevaluate his situation.

Thank you to everyone who has been praying for us and keeping us in your thoughts. I will keep you updated on his progress over the next week.


UPDATE: In the comments Julie P. mentioned getting insurance to pay for the protein formula and I wanted to explain about that a bit. Kiddo's doctors told us that in 2008 a law was passed that mandates insurance coverage for this. That is a great thing, but I'm not sure what type of coverage we'll get. For example, Kiddo is on a high dose of Prevacid right now. Without insurance it would cost us $350/month. With insurance we pay $250. So we are saving some money but this is still a huge expense every month.

ANOTHER UPDATE: Just to clarify, here is the list of things Kiddo cannot eat for now, with an * by anything we are sure he is allergic to: milk*, eggs, wheat*, soy*, fish, shellfish, peanut, tree nuts (esp. almonds*), beef, pork, barley*, oats*, green beans*, and chicken*.

26 comments:

Julie P. said...

I agree that what you've learned is a good thing. About the protein formula, I have a friend who got insurance to pay for her baby's neutramegin (I know I spelled that wrong.) It was a huge fight, but she did get it paid for!

Heather J. said...

Julie P. - Thanks for that suggestion. I just updated the bottom of the post with the info I have on it. :)

Anna said...

Well, at least you've learned what the problem most likely is. Good luck with the insurance. I'm keeping your family in my thoughts and prayers.

--Anna
Diary of an Eccentric

bermudaonion said...

I'm sure knowing what you're dealing with makes it easier to cope. Kiddo sounds like he has such a great spirit!

rhapsodyinbooks said...

This is just an incredible story. And the insurance company - I can't even stand thinking about that and their huge CEO salaries! It's really good that you found out about the chicken!

Amanda@Lady Scientist said...

I'm so glad that you found out about the allergies. At least knowing what it is you have a plan. Insurance companies are very... difficult. Kiddo is definitely a trooper and he's lucky to have such great parents!

TK42ONE said...

Hold up on the turkey! Seriously!

I'm assuming based on what I've seen so far, you have a pretty good (if not great) allergy doctor. Talk to them about chicken, turkey, and poultry in general. Why?

Because I'm allergic to chicken. And all other forms of poultry. I'm as allergic to poultry as I am to peanuts (as in I die if I eat a couple spoonfuls).

Now, when shopping for food, keep an extra eye on the ingredients. Chicken isn't one of the top eight that's required to be in bold and have an allergy warning (like nuts, egg, wheat, etc.). So you actually have to read it line by line. I'm not sure where his other allergies are in that range, but I've found chicken in a lot of "lite" and "low fat" food. It seems chicken is healthier for you so they put lots of chicken stock in food. Even when beef is the main meat.

If he likes chicken, swap out recipes with pork chop instead. Tastes great to me (since I don't die when I eat it) and the two meats are pretty interchangeable.

It'll be tough, but I've survived 30+ years with no chicken and I turned out okay. Well okay, my wife will say I'm a dork, but hey, she married me didn't she?

Heather J. said...

TK42ONE - Thanks for all your input - I really do appreciate it.

We asked the allergist and the nutritionist and the GI doc about turkey. Kiddo eats a lot of it now (along with chicken) and they don't want to remove it from his diet at this point because there is no other protein he can eat. He is still not allowed to have beef or pork so we can substitute that, at least not yet. If his next endoscopy doesn't show a marked improvement, then they will consider removing turkey.

As for labels, we are already reading line by line on absolutely everything we buy so we won't have to change our habits there.

I had already decided to ask them to do another patch test to check on sunflower seeds (they overlooked this one on the last test). To be safe, I'll ask them to include turkey on that test as well - it can't hurt to be sure!

Ti said...

It used to be too that you could ask for some samples to carry you through for awhile. I'm not sure if that is still possible. I seem to recall someone telling me that the laws changed regarding samples of formula.

It will be difficult to avoid chicken but it can be done. Chicken and beef seem to be my triggers. I do best on a completely vegan diet but that is such a hard diet to stick to.

I hope the transition goes smoothly. It's difficult with kids but sometimes I think it's harder for the adults because we are already set in our ways (so to speak). Kids are so adaptable.

Ti said...

I just thought of something.. would that include eggs too? Someone told me that a chicken meat allergy is different than an allergy to eggs?

Heather J. said...

Ti - We did get quite a few samples of the two formula options from the doctor. It is enough for one week, until we determine if he needs the tube or not. And yes, they chicken meat and eggs ARE different allergies, but eggs are out of his diet for now anyway. We hope to get them back in b/c he LOVES eggs, but he's done without them for about 18mths now.

Ti said...

If he has to get the tube, and I am hoping he doesn't, what will be fed through the tube? The formula right? How is that different than drinking it on his own. Just curious.

Meghan said...

I hope he doesn't mind drinking the formula, since I'm sure having the tube would be rough. =/ At least you know what the problem was. I'll still be thinking about you and your husband and kiddo.

Heather J. said...

Ti - The concern is that he won't be able to drink enough on his own. It doesn't taste good and he'd have to drink several ounces every few hours, every day. If he can't keep up with it, that's when they put in the tube. Then we could ensure that he'd get enough into his system b/c we'd control the intake, and he wouldn't have to physically drink it.

I'm hoping we can encourage him to drink it and that he can handle doing it ... but I'm not holding my breath.

chartroose said...

Dang, I feel so out of it! Sorry about Kiddo, and I hope he feels better soon.

Since he's allergic to milk, I guess chocolate is out too. Poor Kiddo.

Dave said...

Heather, I feel bad for Kiddo, and hope he can keep his spirits up as he goes through this. I bet he has inherited your goods spirits.
It's good to know that the problem has been identified, and you can move forward.

Alyce said...

I'm sorry to hear about the new allergies, but glad for you that you know more about how to help him. I hope that everything goes well with the protein drinks.

Heather J. said...

chartroose - Yeah, no chocolate. But he doesn't like it anyway (crazy kid!) so it's not a big sacrifice for him. :)

softdrink said...

And how heartbroken was he over the green beans? ;-)

violetcrush said...

That is a lot of food he is allergic too. I can understand that it could be really hard on him and your family. But I am glad that at least now you know whats causing it. Being in the dark can be really stressful.

Heather J. said...

softdrink - To be honest, he was not happy about the green beans ... they are one of the few veggies he really likes. But only fresh ones, not canned - do I have a picky kid or what?! ~lol~

Callista said...

Wow I've missed out on a lot. I'm sorry I missed a few weeks of Google Reader posts and didn't even know you were having these problems. I've never heard of being allergic to Chicken, it must be rare. I can't even imagine what you feed your child with all those foods he can't eat. One thing I didn't understand, if he's not allergic to beef and pork, why can't he eat it for 3 months?

Those protein drinks are more than ridiculously expensive, that's crazy! With your information in insurance I'm gathering you live in the states, what kind of insurance only knocks off $100 for a medicine? My daughter takes Prevacid, I'm so glad for our insurance. I won't tell you what we pay because I don't want you to feel worse. I hope you can find what you need.

Rebecca :) said...

Heather,
I am glad to hear that your son's allergies have been figured out, but I am so surprised by a chicken allergy! I guess I did not know you could be allergic to meat. I have not heard of that before. Boy, I don't know what I would do. Chicken is 90% of my protein!

I thought my sister was allergic to everything, although being allergic to peanuts, beans, corn, tomatoes, and oranges does cut down on a lot. I mean, think of how much stuff corn syrup is in. My other sister had a hard time gaining weight as a child (notice, I never had such an issue :P) and had to drink protein drinks, but we just bought Boost drinks at Sam's Clubs and that was it. It worked for her, thank goodness. Those protein drinks for him are crazy expensive. I hope you can get them for much cheaper with insurance.

Hang in there. It is good to just know what the problem is, you're right. Been there before. Now the thing to focus on is the treatment and it sounds like it won't be easy. I'll be thinking about you and your son.

Natasha @ Maw Books said...

I can't even imagine Heather. How crazy with so many allergies, that has to be so hard.

Heather J. said...

Callista -

To answer your question, the drs are still not 100% sure that that know all of Kiddo's allergies. They don't want to risk putting a food back in and having the next test results come back poorly. His EE symptoms are not visible externally, so we can't tell if a food (other than milk) is affecting him. Basically, the want to wait until his results are improving before adding anything back in.

And about the formula, we're finding several alternatives that might be helpful. Yeah, our insurance system in the US sucks.

Heather J. said...

Rebecca :) & Natasha - Thanks for your comments. It IS hard, but we're doing ok at the moment, and on the whole, I've got an optimistic outlook based on the last test ... things just might be looking up!

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