Moms of Florida with Expierence in Periodic Fever Syndromes- Mainly FMF

Updated on August 12, 2006
A.M. asks from Lakeland, FL
7 answers

My whole family has FMF and I'm seeking other moms that have expierence, strength and hope with periodic fever syndromes. my oldest son started kindergarden a few days ago... and explaining all this FMF stuff to the school is rough let alone trying to make friends myself or attend playgroups with other parents... mainly because i get irate if other parents bring there child and there contagious. How do you tell your child not to play with another kid because the other kid is sick... when your child is chronicaly ill!
ok i'm just frustrated... any help is appreciated.

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So What Happened?

in the last year the medical teams and my own research has lead us to believe that were dealing with not only FMF but Behcet's Disease as well. The boys now have an appointment with rheumatology research department of All childrens hospital in October.. I know almost a year later. but now I have there symptom journal and a photo log of visable symptoms.

Thanks for your help guys.. printing out the NIH pamflets for the school really helped. sometimes its the small things in live that make it all SO simple!

More Answers

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D.

answers from Tampa on

Dear A.,

I have never had FMF but have had many other things and in my quest for answers have found that medico's don't always know. If your current doctors do not have an answer and a solution then it is time to start research. There are many alternatives that would build up the immune system. Namely and very good diet, no sugar, and supplements to strengthen immunity. Chiropractic could be helpful. Sometimes on these types of things, the quest can be long and fraught with challenges, keep searching and you will figure out.

D.

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C.

answers from Tampa on

A., are you folks (especially your children) being treated for this? This is a medication (called colchicine) which is very helpful particularly if started early.

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L.K.

answers from Ocala on

I don't have any experience with FMF but did have a son who would have recurrent, sudden onset of high fevers. My husband is a chiropractor and would check his neck for misalignments, he always had one at a certain point (I don't rememeber exactly where though). Within 15 minutes his fever would break, every time. I don't know if that is any help, but maybe you could try to find a chiropractor who deals with pediatric cases at www.icpa4kids.com.

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M.S.

answers from Tampa on

I am a nursing mom, and my daughter seems to get fevers (with no other symptoms pretty easily) if she comes into contact with someone else who is sick. Ha, I say with no other symptoms (meaning cough, sneeze, or running nose) but I'm sure she is in some sort of pain because when she has a fever she will spend that whole period of time in my arms nursing. Can you imagine. Nursing a baby 72 hours straight. Throw you schedule or plans out the window. I know that a fever is the bodies natural response to fighting bacteria or a virus within the body. So, I try to help her immune system by ensuring she eats only a healthy diet and gets enough sunlight - for vitamin D. Don't be afraid to tell family members, friends, or playmates to reschedule a visit if they, or someone in their family is sick (they could be potential germ carriers). No, I am not extreme. I just keep it real. My daughter is only 15 months now. She is learning to wash her hands. At this young an age these children don't know good hygene, and so there is nothing to help them prevent catching other's germs. I even tell my mother to come back another time. Believe me, people will understand. And, those who don't respect your wishes, shouldn't be a reoccurring playdate.

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R.C.

answers from Orlando on

OH MI god I have traps (same disease family but rarer) and was diagnosed through the NIH in Bethesda.we now live in Orlando. They have literature about FMF a really easy brochure you can give to the school so you dont have to go through it alone. Plus the natl org for orphan diseases has info for free. Also have you tried etenercept (?spelling) is for arthritis but its an anti-inflamitory and is being studied for FMF.

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B.M.

answers from Tampa on

Um, I'm not sure if I should respond here, because it's with a request! This is describing my son! How do I get information about periodic fever syndrome? I have wondered for so long why he would get fevers with no other symptoms! I appreciate anything!

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