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Newly Diagnosed, Very Sick 1Yo

Ginkgo100

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Ginkgo100 Rookie
Ginkgo100
Posted

At his 12-month well-child visit, my son (the youngest of 3 boys) turned out not to be a well child

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seezee Explorer
seezee
Posted

There's a pretty good book by Dana Korn called Raising Our Celiac Kids that you may want to try.

It sounds like they diagnosed your son and just sent you on your way. Where we go they have training by the nutritionist for the family on this. We took an hour long training where the nutritionist explained ways to have a shared kitchen or not, how to read labels. Are you seeing a pediatric GI doctor for follow-up care? Where we go they have you meet with the GI doctor regularly to check in to make sure your child is growing/healing. They check for vitamin deficiencies and other symptoms. I am not sure where you live but there are a number of celiac specialists and centers around. My daughter had issues with Vit. D deficiency that they treated w/prescription supplements.

My daughter took close to two years to really get better, but she started gaining weight and feeling better in about two months.

Ginkgo100 Rookie
Ginkgo100
Posted
  • Author

There's a pretty good book by Dana Korn called Raising Our Celiac Kids that you may want to try.

It sounds like they diagnosed your son and just sent you on your way. Where we go they have training by the nutritionist for the family on this. We took an hour long training where the nutritionist explained ways to have a shared kitchen or not, how to read labels. Are you seeing a pediatric GI doctor for follow-up care? Where we go they have you meet with the GI doctor regularly to check in to make sure your child is growing/healing. They check for vitamin deficiencies and other symptoms. I am not sure where you live but there are a number of celiac specialists and centers around. My daughter had issues with Vit. D deficiency that they treated w/prescription supplements.

My daughter took close to two years to really get better, but she started gaining weight and feeling better in about two months.

Actually, it's not as bad as I guess I made it sound. He's seeing his regular pedi every week right now, plus we're following up with his pedi-GI doc from the hospital this coming week. We met with a nutritionist before we left the hospital and my pedi gave me a referral for another nutritionist consult. We live in Houston, which has the world-renowned Texas Medical Center, so I'm sure I can find some celiac experts around here.

Yesterday after I posted this, he had his weekly follow-up with the regular pedi, and he lost a few MORE ounces. :( The hopeful thing is that the pedi thinks it may actually be that he just caught a diarrhea virus (it's going around the family) with bad timing. And that would make sense, because this week the diarrhea is more watery, less gooey/fatty. He DOES seem to be feeling better: less cranky, and the developmental milestones that sort of stalled have been progressing again this week. (He learned to walk at 10 months, but he never got good at it; he had 1 word at 11 months, but had not had any other speech development. This week he's walking everywhere, used his first baby sign, and said "mama" this morning!) So I am hoping that is all it is.

Oh, and we're also having the 3yo tested. He's always had mild to moderate diarrhea. The 6yo, I am not worried about, because he has no symptoms, is not genetically related and is not even Caucasian (the race most prone to celiac). (Yes, we adopted him.) And I will definitely check out that book, thanks for the tip!

Robyn

seezee Explorer
seezee
Posted

Phew.

It sounds like your baby is getting better. It does take time to heal and we found out when my daughter was in fourth grade so babies probably get better faster.

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