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What Would You Do If It Was Your Child?

Nicholasmommy

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Nicholasmommy Apprentice
Nicholasmommy
Posted

Ok, I have posted on here about my son's failure to thrive and that recently blood tests taken indicated that he has celiac disease.

I wasn't getting ANYWHERE with my son's pedi. He thought I was making everything up. So I heard of a doctor that helped another woman's child with his failure to thrive. I ran not walked to her office and within 5 minutes she narrowed it down to a couple of things but felt it was celiac. Well it looks like she was right.

I went to the other doctor before switching the insurance over b/c I was desparate (for good reason too.) Now the insurance company won't let me switch to this doctor until May 1st. She has been working with them to see if she can get the biospy approved but it has been several days and no luck.

Celiac disease is genetic and it runs in my son's father's side of the family pretty badly. The doctor believes that it is Celiac and so do I. Looking back it makes perfect sense. My son started having weight and height problems when solids were introduced. For months all he would eat was cherrios which gulten city. At 17 months I started to give him pedisure not knowing that it was gulten free and he grew more in 2 months than he had in the 7 months before. I don't think this happened just by chance!

So here is my problem: He has to stay on gulten until the biopsy happens. It could take weeks (or longer) at least to get the biospy done. Then what at least a week or two to get the results. I don't want to wait because important time is passing by and the longer he doesn't grow because he is getting gulten the more likely he won't make up that height.

So I guess I am wondering if all signs pointed to Celiac and both you and the doctor thought it was would you for go the biopsy and just take him off gulten?

I tried a little test run for breakfast, snack, and lunch were he ate mostly gulten free and he ate more in 6 hours than he normal does in two or three days.

What would you do?

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caek-is-a-lie Explorer
caek-is-a-lie
Posted

If it was my son and I had the positive blood test and knew the battle with the insurance company would lose me precious time, I'd just take him off gluten. You have a positive blood test...that should be enough proof that he has Celiac when he gets to be school age and needs special accommodations at school...but I don't know for sure since I haven't been through that part.

That's just my $0.02. I'm sure people here will have better advice than me. I hope your son feels better soon! :)

Tallforagirl Rookie
Tallforagirl
Posted
I guess I am wondering if all signs pointed to Celiac and both you and the doctor thought it was would you for go the biopsy and just take him off gulten?

What would you do?

Remember that you don't have to wait for the biopsy result to take him off gluten. Once they have done the endoscopy, you can start him on the gluten-free diet right away.

I'd still go ahead with the biopsy, regardless of whether or not you decide to take him off gluten beforehand. You may still get the "gold standard" diagnosis, and the biopsies could provide a baseline comparison for review later on just in case he doesn't make a full recovery. Plus there's always a chance that something else may come to light as a result of the endoscopy.

dilettantesteph Collaborator
dilettantesteph
Posted

You don't mention your sons age which is significant when it comes to making up height. I have read, and remember my G.I. saying it about my son, that if you catch it before puberty thats good. Sorry no references.

Apart from all that, my son was diagnosed on diet alone. He was throwing up 10 times a day, I wanted to make him better as soon as possible and didn't want to wait for tests. The pediatrician was totally understanding about it. It takes many months to get into the pediatric G.I. here. The school was a bit of a pain about it, not wanting to accept the diagnosis even though it came from his pediatrician. Now he has changed schools and there are no problems.

Often you encounter problems with the diet. You think that you are totally gluten free and still get sick. Without a certain diagnosis those difficulties are harder to handle because you can't be sure that it really is celiac. If you are sure you can struggle to find where that gluten is hiding. If not you worry about all sorts of other things that it could be. That is a good reason to wait for the biopsy as long as he isn't suffering too much.

Best of luck to you whatever you decide. If is really difficult to watch your child suffer.

HopeMum Apprentice
HopeMum
Posted

When my daughter had a positive blood test I started gluten free immediately. Then was persuaded to do the biopsy so about a week later she went 'gluten light.' I was told by the nurse for Alessio Fasano at the Center for Celiac research at University of Maryland that just a handful of Goldfish crackers per day would be enough.

It was, her biopsy was positive and we started gluten free immediately.

I thought I wouldn't be able to 'poison' her with gluten while waiting for the biopsy appointment but we treated it like medicine, I gave her the crackers at the same time every day and at least I didn't feel like I was giving up on the diet all together.

HTH

HopeMum Apprentice
HopeMum
Posted

ps, In the meantime I would hound the insurance company and threaten them with Michael Moore!

Good luck.

bear6954 Apprentice
bear6954
Posted

I did the same thing as Hopemom. My son only grew 1 1/2" between the ages of 1 and 2 and went from the 50% tile for growth to 0. My sons ped gi said he had all the symptoms - enlarged stomach, liver enzymes through the roof, the bid D - about 9 a day, throwing up at least once a day, failure to thrive etc. His blood work came back negative for celiacs. We had to wait 3 months to get the biopsy. So I would give my son one or two items with gluten a day. My sons gi dr told me to make him completely gluten-free before the biopsy and that they will stills how damage. However, I wanted to get an accurate diagnosis the first time. Our ped gi was able to see the damage during the biopsy and told us so. We went 100% gluten free that day. He called a few weeks later and stated that the biopsy results are positive so to stay gluten-free. When we went gluten light, my sons symptoms were much less. Good luck

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swalker Newbie
swalker
Posted

I would take him off gluten without waiting for the biopsy.

I think the medical profession is too casual about recommending continued consumption of something that is obviously poison to that person's chemistry.

ang1e0251 Contributor
ang1e0251
Posted

I know I would suffer greatly watching my child in needless pain. You have the blood test results and the dietary response. Sounds like your new ped will back you up with dx when the insurance kicks in. You could also get a genetic test down the road if you feel you need it. While it does not dx celiac disease, it will show the genetic tendancy. That, along with the BT and dietary response would be enough evidence it would seem.

Nicholasmommy Apprentice
Nicholasmommy
Posted
  • Author

SOOOOO, I talked to the doctor and she really wants him to go in and have the biopsy.... I don't know... She said it should be early next week and that it is important so that they can rule out other things. The insurance company seems to be close to approving it.

I don't know if I agree or not.... Part of it is for me that I fought so hard and long with his old pedi b/c i knew something was wrong and he wouldn't listen to me. So when I finally find out it is something is wrong I just don't want my little boy to suffer anymore. I just want him better... This drives me nuts!

Plus I worry about putting him out... AHHH, it is going to be a long weekend.

bear6954 Apprentice
bear6954
Posted

being put under is much better than sedation in young kids. The worse part is withholding food and drink at midnight. The whole procedure takes about 30 minutes or so. My son was 2 when he had his done. He does not remember it and I was a wreck. But since the blood work was negative, I needed proof of what was wrong. After the procedure, we waited for the general to wear off and we drove 1 1/2 hr home. He was non the wiser. He does not remember it. We are getting ready to have a liver biopsy done on Ray next Friday. I am not really concerned about him being under general, I am concerned about him throwing a fit because I can not give him food or drink when he wakes up! They normally schedule these appts in the early morning to make it easier. Good luck

jmjsmomma Apprentice
jmjsmomma
Posted

My 5 yo had the biopsy in January. He was away from me for a total of 20 minutes and 1 1/2 hours after arriving at the pedi surgery center we were on our way home. 4 hours after the procedure, he was doing somersaults on my couch and eating me out of house and home :o) I know it's not for everyone, but I wanted to know EXACTLY what we were dealing with on his damaged insides.

HopeMum Apprentice
HopeMum
Posted

I was convinced to do the biopsy for several reasons. First, a gluten challenge later in life would take much longer to show damage because she already had the damage and was not healed yet.

Then, I realized it would be 'easy' to switch to gluten free now but five years down the line, would we be tempted to 'cheat' with a little birthday cake?

Also, my daughter was 18 months old, had thrived for a year and then tanked physically for 6 months, I wanted Celiac Disease either confirmed or ruled out. If there was something else wrong I didn't want to misdiagnose it.

Everything went well for the biopsy, she was totally oblivious and I would do it again.

I obviously have to say that it's not for everyone, this was just my experience.

As for giving her gluten until the biopsy, I thought I would be so upset but really, it was like a pre-operative prep and her symptoms were much less during that time then totally disappeared (no vomiting) within days of starting gluten-free diet.

Good luck with your decision.

Claire

Nicholasmommy Apprentice
Nicholasmommy
Posted
  • Author

AHHHH, it is a very long story but the insurance company is a pain in the ASS!!!! I would have no problem paying for the biopsy but I just worry that if something goes wrong we would be in deep poop. If we don't get everything sorted out with the insurance by tomorrow than it could be another month!!!! I just don't know what to do....

Woody6 Newbie
Woody6
Posted

I feel your pain....many hugs your way.

Do what is best for you and your child. Wait for the biospy, don't wait, go gluten light and wait for the biopsy....no matter what you decide it will be the right decision for you and your child. Many gave great information as to why they did what they did. :D

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