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  • Desperate for help for my daughter's LPR

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    Old 02-24-2014, 10:03 PM   #1
    Jacs1111
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    Desperate for help for my daughter's LPR

    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 started taking Nasonex and Asmonex and also has an inhaler (ProAir) 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 04-25-2014, 01:09 PM   #2
    busymommy
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    Re: Desperate for help for my daughter's LPR

    I am so sorry to hear about your daughter. I have been suffering with what I think is acid reflux symptoms and am trying to sort it out now. Have you found any help for her? I see your message was sent a few months ago.

     
    Old 05-09-2014, 07:45 AM   #3
    Cwind
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    Re: Desperate for help for my daughter's LPR

    Jac, I hope she is better, but if not...I would stop the papaya enzyme. It can make things worse if the throat has a low pH (which would activate the papain..one of the potential causes of the irritation at the throat).

     
    Old 05-12-2014, 04:56 PM   #4
    busymommy
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    Re: Desperate for help for my daughter's LPR

    How is your daughter? I shared your story with my sister who had food poisoning this past January. It took her until just this past week to feel better! She felt like she always had something in her throat. She had an endoscopy and her doctor told her that it just took time to heal and it took almost four months to heal! Maybe your daughter's throat just needs time to heal? I remember my sister said he had Activia yougurt three times a day for a few weeks and her stomach felt better after that but her throat kept bothering her just until last week! If you have done all the diagnostics, maybe it's just a matter of time until she heals. Just a thought.

     
    Old 12-07-2014, 08:15 PM   #5
    jw994
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    Re: Desperate for help for my daughter's LPR

    I am so sorry about your daughter. I have posted suggestions that helped me with LPR and some of these might help your daughter.
    1. Do not eat or drink anything 3-4 hours before bed time.
    2. Elevate your daughter's headboard at least 5-6 inches. This works much better than just propping up pillows.
    3. Purchase Dr. Jamie Koufman's book on eating a low acid diet. She includes information about how low acid foods like apples and bananas can cause reflux.
    4. I only drank water, chamomile tea and I kept alkaline water to drink at night when I noticed burning. The alkaline water should be a ph of at least 8 to neutralize pepsin from reflux which damages the tissues. Regular water has a ph of 7.
    5. Get carafate suspension (prescription) for your daughter to take 4 times per day for 6 weeks to help the esophagus and throat heal.
    6. Get Gaviscon Complete when your daughter has reflux not controlled by PPI. You will need to order this because you cannot get it in the USA. It also neutralizes pepsin.
    7. Chewing sugarless chewing gum helps. Avoid mint flavors because mint causes reflux.
    8. You could also add Ranitidine an H2 blocker that helps with reflux.
    9. I would put a teaspoon of aloe vera juice whole leaf in water to drink which also helped after I ran out of carafate suspension.
    If you daughter remains on a PPI, she can become deficient in Vitamins B12, magnesium and calcium. Some people think upping vitamin D3 can help. They recommend drops or softgels.

    I can totally identify with what you are dealing with. ENTs know about LPR, but they do not know how to treat it. Many Gastroenterologists do not recognize that LPR exists. It is very frustrating.

    If you try some of these suggestions and your daughter is still suffering, I would recommend that you send a message to my doctor, Dr. C. Daniel Smith with Buckhead Surgical Assoc. in Atlanta. I was very desperate and I sent him a message on a very popular social network and he was willing to look at all of my test results for free. When I sent my barium swallow results, he noticed a problem that the radiologist and Gastro doctor both missed. He performed surgery on me and I am totally off of meds. He also was willing to refer me to a doctor in Boston or two in Portland. I do not know where you live, but I traveled 4 hours to see Dr. Smith. He is a surgeon, but he is very helpful and he has several procedures to help remedy acid reflux when meds do not work.

    I hope your daughter gets relief soon. She is very young to be on those meds for a long period of time.

     
    Old 12-07-2014, 08:33 PM   #6
    jw994
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    Re: Desperate for help for my daughter's LPR

    I forgot to tell you that I took Amitriptyline 10 mg a day for anxiety and it also calms the nerves in the throat and helps with sleep. I could not take a higher dose because it made me have a very dry mouth and I became very sleepy during the day.

     
    Old 12-29-2014, 08:58 PM   #7
    jw994
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    Re: Desperate for help for my daughter's LPR

    I have thought about you and your daughter often. I hope she is better since your original post was several months ago.

     
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