Guest guest Posted March 18, 2009 Report Share Posted March 18, 2009 My daughter has suffered from since she was 10 months old, 6 months ago she was diagnosed on her 8th birthday. I'm new to this site, but haven't yet found anyone talking about acid reducers. When she was 7 she was incorrectly diagnosed with sever acid reflux and given Mylanta before every meal and at bedtime. When she was hopitalized and diagnosed with a year later, they took her off Mylanta and put her on a daily dose of Famotidine taken via pill. This has had as big of an impact on her as Prednisone. She can eat without pain and doesn't throw-up from fever. Her eating is now great & she enjoys food with flavor- something new! Is anyone else giving a acid reducer for the stomachache? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2009 Report Share Posted March 20, 2009 We had tried non-dairy and limiting other foods that are not recommended for people with sensitive digestion, but it didn't change anything. My daughter already was on a very limited diet of her own choice as anything with additives or to much sugar would make her stomach worse- especially high fructose corn syrup. She loves bananas, avocado, papaya, plain noodles, soy beans, white fish, apples, cooked spinach, berries, rice cereal, etc, all without butter, oil or seasonings- so I'm not thinking her diet brings on attacks- and neither does the gastrointestinal specialist. When we are at bday parties with only chips and hot dogs she will pass on her own choosing. Having 2 other children who love all the junk food, I think this is due to her not being able to stomach much. She has had issues with her stomach her whole life, but only since we put her on the over the counter Fomotidine did she improve and is now nearly pain free except mildly during episodes. She used to throw-up several times a week and more with fever, but now she rarely will vomit. She has been suffering from for 7+ years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2009 Report Share Posted March 21, 2009 Hi hawaii poster, Just curious, has your child been genetically tested for FMF? I used to read the FMF boards and the symptoms you are describing ring familiar. Sent from my BlackBerry® smartphone with SprintSpeed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2009 Report Share Posted March 22, 2009 Thanks for the suggestion . Although it has been 5 months since she has been diagnosed, we are only beginning the process of getting her to see someone who knows about these syndromes. The ID Dr who diagonsed her noted that her symptoms resembled FMF, but she has never had a rash, and honestly he didn't know much about Periodic Fever Syndromes in general. Her official diagnosis is . She hasn't had any gene testing, and I've only learned through this group that it is something I should be requesting. At this point, I wouldn't be suprised if she does have something else & I just don't have the right resourses to get her diagnosed. I've posted for informtion on who I can get in touch with, or beter yet, who the Dr who will be caring for her can communicate with in regards to what happens next. We have been treating with Predisone, and I scheduled her for a T & A on April 8. Our HMO is looking outside of their network for a Dr who knows about this, hopefully in our state. I'm hoping she can see someone before the T & A. We will be in Boston (we summer in ME) in July-Aug for 6 weeks, so I've asked if she can see someone there. Do suffers NOT have stomach issues? She also get terrible sores in her mouth (previously diagnosed with Herpes), and sores on her tonsils (for years she was diagnosed with Strep throat). She has been hospitalized for severe constipation and been seening a specialist for cronic acid reflux. She gets terrible headaches and her whole body aches when fevering (every 28 days). She is small for her age, but a exceptional athlete when not fevering. Anyone have any other suggestions of the syndrome this may be as you are all so well informed here? It would be so helpful to take some info back to my HMO! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2009 Report Share Posted March 23, 2009 Hi " Sail " I am by no means an expert, but I do remember hearing that if there are significant GI issues then the fever syndrome is probably not . I remember reading also that those with Hyper IgD syndrome can have terrible problems with acidity and headaches too. I would continue your research as what you're dealing with may not be and therefore the chances of a T & A working could be less. Take care Debbie - mum to Hans, 14 years South of France Quote Link to comment Share on other sites More sharing options...
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