Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Hi , My son has HIDS. We just came from NIH. Dr Kastner said there are roughly 200 cases worldwide and NIH is researching 10. Clay is one of them. Most of what you described could fit Clay. He also has vomitting & diarrhea with each episode. He use to fever almost everyday til he was put on pred. We are trying to find alternatives since pred should not be used for long term. As soon as he went off Naprosyen(sp) and pred fevering started again almost daily. While we were there we met Dr Simon which is a rock star in the HIDS communtiy. She has done some amazing research with HIDS. I look forward to working with her in the future. Clay is in the middle of severity. For most cases Enbrel has worked well for them. We are going to try another route. We will let everyone know how that goes. Fran is amazing. Joe is a cutie pie, so smart. I hope all of you get the chance to meet them. I enjoyed visiting with her. Kathe is so strong and graceful. Issaac is a doll. It is amazing how much our children and us all endure but yet we talk about the illness like- " what is the best way to cook pasta? " We were all so matter a fact. Fran is a wealth of knowledge. I feel lucky to have met them. , my son never had a LP to rule on HIDS. He was genetically tested and had urine test. HIDS has a melovate kinase deficiency. Clays mutation are H380R and V203A. Dr DeGuzman used GeneDX center for the DNA test and a lab out of Oregon for the melovate testing (urine). Any question, I don't mind answering. I could write a book of the adventure (as most of us could) but if there is something I could help narrow down let me know. Tammy, mother of Clay 4 HIDS Quote Link to comment Share on other sites More sharing options...
Guest Anne Posted July 17, 2013 Report Share Posted July 17, 2013 Hi Tammy, I hope clay is keeping well. My son also has HIDS and with only 4 recorded cases in the U.K,(and only 2 in Scotland where I live) his consultant knows very little about his condition. Can you tell me who NIH are, I am interested in the research they are doing. I have also found very little information on the Internet, have you managed to find any useful information? Ben has been ill since birth and it has taken me 6 years of fighting with GP,s to get him diagnosed. with treatment just starting a few months ago I am keen to get as much information as I can. Anne Quote Link to comment Share on other sites More sharing options...
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