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concerned_mom061

Can Someone Please Help?!

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Well, is a scope really the only way to tell? Is there not some other non-invasive way? I'll do anything in this world to help her, but I hate to put her through all that if there is something else we can do. I understand that you are not telling me to do it, and that you're not a big fan of it....I'm just asking if there is another way.

Trust me, I investigated EVERYTHING and there is no other way to know if EE/EG is her problem. I would be a proponent of making sure ALL gluten is eliminated and if she doesn't improve then doing the scope. To fix the problem you would probably be put on Neocate only and go through allergy testing. The scope can tell if it is EE/EG, but it can't determine what is causing it. It could be any food or even an inhaled allergy. Allergy testing is the only way to determine what the culprit is. The bad news is that allergy testing is often unreliable in young kids. From what I understand with the RAST testing (blood) is that if you get a negative there is a 90% chance that it is actually negative, but if you get a positive there is only a 50/50 chance that it is actually positive. I'm not sure of the skin prick statistics. We went ahead with the scope while megan was on all food BUT gluten. I'm not willing to do a trial of that because we know it does terrible things to her. If you're going to do a scope I would beg to get her in ASAP so that you can get her tested before the foods are out of her system.

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I just though I'd update everyone a little.

I emailed Bree about Kylie and she was kind enough to respond quickly.

She's been very busy so just in case she doesn't get on here in the next week.....

Kylie has her surgery on the 14th for her ear tubes.

If everyone can keep her in their thoughts and prayers, I'm sure it would be appreciated. :)

Her rash had gotten a little better but flared back up again. Bree will have to do a more thorough update when she has a moment.

Just wanted to get this out there.

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Thanks a bunch Andrea!! You guys are great!

As I told Andrea...sorry I haven't posted in a while. I've been really busy w/Kylie and my little brothers, they are 12, and I am raising them. Kylie somehow caught the hand, foot, and mouth disease, and I have never seen her so miserable. She's been running a high fever, and wouldn't take anything by mouth. The only thing that kept her out of the hospital was me begging her doctor not to put her in and the fact that she has a feeding tube. So, we just put everything through her tube until she felt better. She has dropped more weight, but she's been sick, so we're pretty sure that's why. Also, she goes for her pre-op visit today, and they put tubes in next week, as Andrea has already stated. Her rash did improve w/the cream Andrea sent.......thanks so much, Andrea......and w/the complete removal of all gluten, wheat, eggs, milk, and soy. That pretty much cut everything out....but I did find some food from glutenfreemall.com that is from a company called, Enjoy Life Foods. She still will not eat much, though. I also took everyon'e advice, and I stopped giving her the little dried fruit and everything else that was suggested. Her diarrhea has imorived, but she still has several diapers a day. Some days are better than others. We are still waiting for the results from bloodwork they did last week to see if her immune system responded to the treatment that was started. Everyone please pray about that.....for if it hasn't she will have to continue getting an injection of antibodies for every week for many years to come. However, her reflux seems to have worsened. She gags and chokes a lot, and has even stopped breathing a couple of times. We are working on a mixture of new meds to fix that.

All in all, I have seen a dramatic improvement in her....she sleeps better, her rash looks better than it ever has, she is happier, and her stools have improved. I thank all of you so much for everything!! It was everyone's advice and guidance that has gotten us to where we are, and I even told her pediatrician that. She told me that she agreed, for no one knows what it is like and how to deal w/it all except for a mother who has been there. She advised me to continue to stay involved w/all of you and heed to the advice that is given....while keeping her involved, of course. So thank you again, and please continue to pray. If I can do anything for any of you, please just ask!!

God Bless you all!

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I didn't read all of this, but the first page. I am SO sorry for all you have gone through with your little girl! I know when I was going through the worst with my son it made ME physically ill.

Have you tried goat's milk?? I don't know if that would help at all or if she would even drink it, but it sounds like she is in a desperate situation. It sounds like she does need a different formula without any soy or milk.

I am not an expert whatsoever and I hope you find the answers.

Have you tried aquaphor for her bottom?

I would also persue genetic testing. I saw something on discovery health about a little girl that had some rare metabolic disorder and she couldn't have any protein. I am sure this is very unlikely, but I would be finding a specialist somewhere to rule EVERYTHING out. Has she seen a Genetisist?

Take care and I will keep your little one in my prayers!

Monica

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