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my 7 year old daughter has had fevers every4-6 weeks since she was 4.5 years old she also has swollen lymph nodes,mouth ulcers,rashes,& joint pain. This last 7-10 days. The Drs. think it might be hibernian fever this disease occurs in Irish . any body with this or other fever syndroms please contact me. thank you
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HI,
Not sure if you have visited our website yet, but you may find it helpful. I created for my son when he was battling fevers. I hope it helps.
http://www.geocities.com/fannyfarfunkle
Wendy
Hi Bonn,
Sorry to here about your little one. I've been there! My son, now 5, has been battling the same thing since birth. Although we havenot received an official diagnosis, I know that in December when we return to the NIH, they will probably confirm his diagnosis of Familial Mediterranean fever, one of the periodic fever syndromes. Before discovering the gene mutation for this disease, they first thought he had NOMID, then TRAPS(a.k.a. hibernian fever) then HIDS, now FMF. These diseases are hard to diagnose on symptoms alone becasue they have overlapping symptoms. I thought for sure it was TRAPS, becuase in my book his symptoms most closely resembled this disease and we have strong Irish heritage, but his genetic test for this was negative. Not all kids with these diseases have the genetic mutation present, which further complicates things. I am here to talk with you about anything you may need to talk about, it really helps! Let me know what is going on! :) Hang in there.....
thank you it you be great to have someone to talk about this illness with . When i try to talk to family & friends about this rare disease they just don't understand hell i don't really understand it myself thank you ,bonn
This is a relay to everyone on this post, it all sounds like HIDS these are all the symptoms my son has had since birth and he is now 13. A simple blood test a imuglobin D test will confirm if it is HIDS or not. Make sure the doctor collect the sample during a fever episode. That is when the levels are high. Mouth Ulcers, stomach pain, high fevers, body aches, joint pain, rashes that look like hives, headaches (these are more now he is a teenager) and mostly weakness and passing out feeling. It never ends (sorry)
Write me anytime for questions okay.
my daughter has been seeing Kastner and TEAM since Jan.03. she is 8 now....neg on all known gentic....I was just at the INN this week!
I do not have the time right now to get into a long post....BUT if you go to our carepage you can read all about her battle!
carepage.com then under search : breanaW
Ours is a very long story as well. Our son has had fever attacks since he was born. He did not start the cyclic part of his fevers until he was two and a half. He was almost four by the time we got a diagnosis. There are issues that come up for him all the time, but as a parent it is our job to educate ourselves as much as we can, find someone you can connect with in the medical field (for us that is our son's pediatrician) and advocate, advocate, ADVOCATE! That is your only option. Our G.P. still to this day takes no responsibilty to even find out what our son's diagnosis means. His theory is that it is unlikely that he will ever have another patient like our son, pity the up and coming doctors that are under his teaching... If you want to talk at any time, please feel free to contact me at any time. We have had our son's diagnosis for two years now and we have worked out a few bumps in the process. There are always stumbling blocks, though, take care of yourself and your family. Karen
well the gene tests are back it is hiberinia fever or know as traps it is g.reat just to have an answer finally. now i &my son will be tested. thank you all
What kind of test do they do for Hiberinia Fever?
they did genetic test it took 2 mos. to get the test back at least it's an answer now we have to wait and see what the drs. are going to treat her with, right now they are using steroids.
i am so sorry for all that you are going through. i do not know what hiberinia fever is... but my daughter has a rare form of vasculitis- HUVS (she's 10)... and have done endless research on vasculitudes... the symptoms you have mentioned overlap with those of bechet's... it may be completely unrelated, but having more facts can never be too much when trying to take care of your child. the vasculitis foundation is a good resource as is Johns hopkins. in my own research i also came across an interesting article... i do not know the source... but again, if it helps...
http://medgenmed.medscape.com/viewarticle/542310_print
if you need any info on vasculitis... please feel free to contact me
best to you and your family
julez
My 16 year old daughter has Hids.She has all the same problems plus some others as your daughter.I would have her checked for it.It's just a simple blood test.Sarah went almost 3 years without a diagnosis.She had had blood work done last Jan.checking for Hids.The test came back positive.Well since it is so rare her doctor at the time did not feel that Sarah had it .Fever was not a constant complaint.She to this day will get a fever it may last for an hour and then go away only to return later that day.Last flare up she had fevers that lasted about 10 days.She is not completely back to normal yet.That was about 3 weeks ago.It is so scary to have a child and know there is something wrong and no one can tell you what it is.I have gone to bed many of night crying just wondering what was going on with Sarah unsure of what the future would hold for her.Thank God that the blood test was done and now we know what we're dealing with.If you want to talk email me.Good luck
My son, Noah has TRAPS, which is also an Irish decent hereditary disease. You can learn all about it and find information on TRAPS on his website. I have a full page with just TRAPS links on it for research, treatment, case studies, support groups, etc. He was diagnosed with it in Aug. 08. You are not alone. If you have any questions or need someone to talk to, email me. His website is www.freewebs.com/noahdavidsjourney
You can email me from the contacts page on the webiste. God bless, Sarah
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