Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 Hi Bree, Congratulations on finding doctors who have heard of and are willing to test for a genetic fever. I have 2 daughters with HIDs and find that one dose of prednisone does not always get rid of all the symptoms. Sometimes the fevers et al come back and sometimes only the diarrhea and nausea. A second dose is sometimes necessary (Given a day or even two days after the initial dose it is 1/2 the initial dose amount). You may want to give it a try. Also, do you live north of Seattle? We're in Vancouver BC not far from you. Good luck and keep us up on the test results! Wilke > > I haven't posted in a long time as I had nothing new to tell, but > now I do! > > We went down to Seattle to see 2 specialists. A Pediatric > Rheumatologist and a Pediatric ID. They were wonderful. They said > that Ethan has one of two things. He either has HIDS or . They > are doing lab work (still waiting for results) to confirm or rule > out HIDS. They did start Ethan on 4ml. of Prednisone though. They > said that the medication would help. 3 Days after we got back > (Saturday the 11th) Ethan had an episode and I gave him his dosage. > Within 5 hours he was fever free. My only concern is he has started > having Diarreah again since that and it is only Monday/Tuesday. I > hope he isn't getting another episode!! I should know in a week > about the test results and will let you all know. I am just so happy > to finally have a tentative diagnosis. I have to make an appointment > with his regular ped. to discuss the findings and such..ugh I > dislike those people so much but they are my only available ped's. > > Hugs to all!! > Bree Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 I held off on the second dose to see how he would do. He has been ok so far. We actually live in Anchorage, Alaska. We don't have those pediatric specialists here so we had to be medi-vac-ed down to Seattle. Thank god for the military footing the bill or we wouldn't have been able to get him the care he needed. I also saw a post regarding bad breath/odor. Which I had noticed that Ethan had but I never connected it till now. The dr.s are pretty dang positive it is HIDS they are just waiting on the labs to confirm. Seeing as how it is genetic we are keeping a very close eye on our daughter who is only 6 months old but luckily has not shown any symptoms as of yet. It just so nerve wracking and I wish there was more info available on it. I am one of those people that has to read a medical condition to death to feel better about it. Oh well hopefully one day when some one knows more about it. Hugs to all!! Bree > > > > I haven't posted in a long time as I had nothing new to tell, but > > now I do! > > > > We went down to Seattle to see 2 specialists. A Pediatric > > Rheumatologist and a Pediatric ID. They were wonderful. They said > > that Ethan has one of two things. He either has HIDS or . They > > are doing lab work (still waiting for results) to confirm or rule > > out HIDS. They did start Ethan on 4ml. of Prednisone though. They > > said that the medication would help. 3 Days after we got back > > (Saturday the 11th) Ethan had an episode and I gave him his dosage. > > Within 5 hours he was fever free. My only concern is he has started > > having Diarreah again since that and it is only Monday/Tuesday. I > > hope he isn't getting another episode!! I should know in a week > > about the test results and will let you all know. I am just so happy > > to finally have a tentative diagnosis. I have to make an appointment > > with his regular ped. to discuss the findings and such..ugh I > > dislike those people so much but they are my only available ped's. > > > > Hugs to all!! > > Bree Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2011 Report Share Posted January 28, 2011 Hello all, It's been some time since I have posted here. A recap--Ethan has suffered recurring fevers, rashes, fatigue, unexplained pain etc. for years (he's four). We went round and round with pediatricians and rheumatologists considering our family history of autoimmune diseases and my firm belief that something more serious was taking place than what the doctors believed. I enlisted a naturopath and finally consulted a new developmental pediatrician. Lo and behold...we have a diagnosis. While my heart is breaking for my baby, there is relief in the knowledge that there IS something happening here and that there is treatment available. Ethan has early onset bipolar condition. Pretty big leap from JIA/JRA, huh? Not in the developmental pedi's mind. I always assumed that the behavioral issues we battle would improve if we could just figure out what was plaguing Ethan. Turns out that it's a bit of a chicken/egg type of scenario. We later had his diagnosis confirmed by two other doctors. Ethan's fevers are still a question mark but they believe it is a result of immune disregulation due to stress and the inherent nature of the disease. BP kids also suffer thermoregulation issues. The rashes, fatigue, pain, etc. are likely manifestations of depression and anxiety and his inability to sleep. We began treatment a week ago and are beginning to see results. This will be a lifetime of changes, modifications, research, patience and loving support. I am grieving for my child but am so glad I never gave up on him (and never will). Thank you all for your encouragement and support. While we didn't necessarily " fit " with your family, you welcomed us with open arms and were key in urging me forward to uncover my son's illness. Thank you. Ginny & Ethan (four years old) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2011 Report Share Posted January 28, 2011 Hi Ginny, It is so hard when you know something is wrong and you have no answers. I glad you finally a diagnosis and can start treatment that can help him. Even with this your life has changed and you feel as if your heart has been pulled from your chest. All of us here understand this feeling and are still here if you need us. We can't help with the medical aspect of course but we can empathize with having a sick child. Please keep us updated. I hope you can find a nice support group with the answers you need. God Bless, , Amber (16) Psoriatic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2011 Report Share Posted January 29, 2011 I have a friend who adopted a child from China. She is now a teen and she always got fevers and I believe at one point they thought it was JRA. Recently her dad told my husband that they too suspect bipolar disease. The symptoms do sound similiar to your son's. Jo > > > Hello all, > It's been some time since I have posted here. A recap--Ethan has suffered recurring fevers, rashes, fatigue, unexplained pain etc. for years (he's four). We went round and round with pediatricians and rheumatologists considering our family history of autoimmune diseases and my firm belief that something more serious was taking place than what the doctors believed. I enlisted a naturopath and finally consulted a new developmental pediatrician. Lo and behold...we have a diagnosis. While my heart is breaking for my baby, there is relief in the knowledge that there IS something happening here and that there is treatment available. Ethan has early onset bipolar condition. Pretty big leap from JIA/JRA, huh? Not in the developmental pedi's mind. I always assumed that the behavioral issues we battle would improve if we could just figure out what was plaguing Ethan. Turns out that it's a bit of a chicken/egg type of scenario. We later had his diagnosis confirmed by two other doctors. Ethan's fevers are still a question mark but they believe it is a result of immune disregulation due to stress and the inherent nature of the disease. BP kids also suffer thermoregulation issues. The rashes, fatigue, pain, etc. are likely manifestations of depression and anxiety and his inability to sleep. We began treatment a week ago and are beginning to see results. This will be a lifetime of changes, modifications, research, patience and loving support. I am grieving for my child but am so glad I never gave up on him (and never will). > > Thank you all for your encouragement and support. While we didn't necessarily " fit " with your family, you welcomed us with open arms and were key in urging me forward to uncover my son's illness. Thank you. > > Ginny & Ethan (four years old) > > > Quote Link to comment Share on other sites More sharing options...
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