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Desperate mother looking for help


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Old 02-10-2014, 12:20 AM   #1
Jacs1111
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Desperate mother looking for help

Hello, is there anyone out there that can help?

My 9 year old daughter is suffering greatly. Until late last year, she was a very healthy child. Perfect attendance in school, competitive dance four days a week, and happy. Last October she got sick, vomited and ran a temperature for a day or two. After that initial bout, she started complaining about a sore throat, and her stomach was doing this strange sucking in, like involuntary stomach spasms or contractions. We had a bad night where we went to the emergency room because her throat was hurting, felt "tight" and she was having a hard time breathing, swallowing, etc. We were told to see an allergist. She saw one the next day, and the skin test came back completely normal. We were referred to an ENT. The ENT scoped her throat and said it looked a little irritated, and referred us to GI because he suspected reflux based upon her symptoms. Constant throat clearing, a feeling of something clogged in her throat, throat pain, stomach spasms. GI put her on Prevacid twice a day. We did a barium swallow, EGD, and Bravo pH study. Normal, except the GI said the Bravo pH study showed she had an extremely long reflux event (45 min.) Her score was 4.7, which he says was normal. He diagnosed her as having "minimal GERD" and weakly acidic reflux- what the heck is that!?! Told us everything looked good on his end, but keep taking the PPI's. Everything is NOT good. My daughter started taking Papaya enzymes and probiotics. She still felt horrible one month later (missed over two weeks of school) so we did a follow up visit to the GI, and he seemed perplexed that the PPI's weren't working. We did a gastric emptying study, which came back normal. He sent us back to ENT. ENT said he couldn't help her, and we should try to switch the PPI she is on. Go back to the allergist, he says, maybe it's a food intolerance? We switched her PPI to Prilosec. It didn't help. ENT then scoped her again and sent us back to the GI, saying he can't help her because it was a GI issue. We went back to her pediatrician, who heard her coughing (constant dry cough) and referred us to a Pulmonologist (whom we still haven't seen). She was retested for allergies at the Allergist and came back positive to a million random things. Why was she negative the first time? We told the allergist that she had taken an antihistamine the day before, but they told us that the test would be fine as long as the test showed irritation. So now we are back to square one, but now add the allergies. She has started taking Nasonex and Asmonex. She has an inhaler for when it's hard to breathe. We went back to GI and asked for a referral to an integrated medicine doctor. Why not try something new? She is having extreme anxiety and I think is depressed because she feels terrible every day. I am going to send her to a psychologist so she can learn to handle her pain and live with this condition, because I am now convinced there is no cure for LPR, or whatever she has. I feel like I have tried everything. We are on the low-acid diet. We just cut out gluten and dairy. I am losing my mind over this, and my daughter needs help. If anyone read this post, and can help my daughter, please help!

 
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Old 05-08-2014, 07:35 PM   #2
marisuela
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Re: Desperate mother looking for help

What does your daughter eat on a typical day? Do you keep a food journal? Do her school teachers know that she needs her diet to be monitored (kids often trade lunches and such)?

One of my daughters had a 24 hour stomach bug that turned into an almost three week ordeal where she was throwing up at random times on random days, her throat bothered her, and she just looked and acted unwell. We finally figured out that tomato products and citrus fruits were causing the problem.... but she wasn't allergic to them. Her tummy just hadn't.... not sure what the technical term would be here, so I'll just say that her tummy just hadn't healed from the bug that she'd had and the tomato and citrus foods were just enough to irritate her.

To fix the problem, we put her on a very strict diet for two weeks.... basically the BRAT diet, but with chicken breast, carrots, ramen, and saltine crackers added in. Oh, and she went off dairy for a full 48 hours the first two days of the restricted diet. Absolutely nothing else for two weeks! It sucked, but it helped her tummy to heal and she hasn't had any problems since.

Another thought that just popped into my head.... back to my first question of what is she eating every day.... is what she's eating enough for her nutritionally? Because that is one of the drawbacks of restrictive diets. When trying to figure out our kids' dietary issues, we tend be so focused on what our children CAN'T have, that we tend to forget about what they SHOULD have. Make sure she is getting enough healthy calories so that she has the energy to make it through the days. Otherwise she will be run down and tired just from lack of nutritional calories.... which will just add to her feeling crummy all the time.

I hope something here could be of some use to you. If nothing else, just know that you're not alone.

 
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allergies, anxiety, child, gerd, lpr (laryngopharyngeal reflux)



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