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Member Since 20 Apr 2012
Offline Last Active May 07 2013 07:13 PM

Posts I've Made

In Topic: DH Photo Bank

12 January 2013 - 09:10 PM

The tough part is finding a doctor anywhere near our area. We live in a small town and it's not easy. We drive 1.5 hrs. (1 way) to see a good pediatrician and the specialists are a good bit further (one is a 3 hr. drive one way). We would be more than willing to put him on gluten for a time, in order to do a biopsy if we could actually find a doctor within a reasonable distance that is worth anything. We took him to his ped numerous times for this rash...she was stumped. She referred him to a local dermatologist, who basically said he had no idea...to try this steroid cream on it (that his office didn't even call in like they were supposed to). He was just...dumb, to put it nicely and it was a total waste of time (and that wasn't the only issue we had with that office).

So yes, we would love to have an official diagnosis, but that's easier said than done. Our older son's GI recommended bloodwork, but I know how unreliable the bloodwork is, especially for young kids. We are not willing to put him through blood testing at this point when keeping him gluten and dairy free keeps the rash away. A biopsy we would be totally fine with. I think the derm we seen just turned us off of trying to find another, so we have kept him gluten free and he's been fine. He started gaining weight finally and we just left it alone...stuck with it and haven't worried about getting anything "official".

If you don't mind, would you please remove my pictures from what you quoted? Please know that I don't request that to be "snarky" or "rude" in any way. I just may want to remove them from online at some point and won't be able to take them out of someone else's post. Thanks!

In Topic: DH Photo Bank

10 January 2013 - 11:37 AM

My son is not "officially" diagnosed, as we've decided to hold off on testing until he's older. My son had silent reflux and cried constantly (and I would bet part of that was itching and not being able to scratch). He had weight loss/failure to gain issues for months. He finally made it back onto the chart at 9 months and stayed in the 3rd percentile until 15 months, where he made it all the way to the 7th percentile. He's still smallish, but he's growing consistently finally.

He had a rash almost from birth. Steroid cream made it go away, but it would come back worse. We figured out very early on (2 weeks) that he had problems with dairy...couldn't even do hypo-allergenic formula (Nutramigen, which is still milk based, though very broken down). The rash got a bit better when we switched to Neocate (dairy free) and then he started getting oatmeal and it was worse again. Once we made him 100% dairy and gluten free, the rash went away. The only time it comes back now is if he gets glutened or "dairied". Even then, it hasn't been nearly as bad as it was for months. It still itches him really bad though and he digs at it constantly (it's the worst on his legs). He does gets some random spots here and there, which I believe is because we've brought small amounts of gluten into the house again lately (bread, for brothers' sandwiches, and crackers for their snacks). So the house is going gluten free again and if that doesn't do the trick, we're going to change salt and try to start limiting iodine. Anyway, if you made it through all that (I suck at narrowing things down and wanted to make sure I gave all the necessary info), here are some pictures from when he was almost 5 months old and it was pretty much at it's worst...

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Getting Better (fading)
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In Topic: Healing The Gut In A Child

29 May 2012 - 05:09 AM

You could also try a probiotic, which helps with all kinds of tummy issues. Culturelle for Kids is dairy and gluten free (and also has no wheat, dyes, flavorings, or preservatives). It comes in powder packets that you empty into a drink. For the baby, we just empty it into a bottle. For the big boys, just put in in a bit of watered down juice.

In Topic: Does Your Dh Do This?

29 May 2012 - 04:51 AM

Doesn't sound anything like my son's either.

In Topic: Testing Children

22 May 2012 - 09:11 AM

I can't be of too much help, but I will tell you my experience (the little bit of it anyway). My 7 year old son's doctor wanted to do the full testing, including the genetic part. They put in for the pre-approval, but insurance refused to pay for that part. So we are only able to get the regular testing done, which we are hoping is enough. He is going this Friday for that.

If his testing is positive (I'll be shocked if it isn't), we'll then test his 6 year old brother. We opted to go that route because he is...well, let's just say it'll take an army to get blood from that child. We're trying to avoid that if at all possible, lol. We already know the baby has Celiac because he has DH (dermatitis herpetiformis) that cleared up once he was gluten free (he had had the rash his entire life before that). Testing is really unreliable under the age of 2 (or is it 3?) so we're not bothering with it for him at this point. We haven't decided if we will test him eventually, but at this point, we are not.

I would just talk to your kiddo's doctor about it and see what testing your insurance will cover, depending on your diagnosis. My son's doctor does the bloodwork first and then if it's positive, they see a GI to do the biopsy. I don't know yet if we're going to do the biopsy, but that's what they like to do. Each doctor and insurance is going to be different though. Come up with a list of questions maybe and give them a call or go in for a visit. Sorry I can't be more help, but good luck to you!

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