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fmf and cronic illnesses

paula_mosseri
0 Recommendations

I am the parent of a child with fmf. I was wondering if anyone else is experienceing cronic illness, other than fevers, with fmf? She misses so much school, and not because of the fevers.

Explore topics in this discussion:

Anxiety Pain TRAPS Stress Colchicine

8 replies

DebbieFMF

Hi Paula, My name is Debbie. I have 2 daughters with FMF and I have it. We have lots of other symptoms besides fevers. Anything I can help you with?
DebbieFMF

Melissa1

I have a daughter with FMF. Discussion with others would be greatly appreciated.!!!

JKP

I have always wondered if my daughter has a weakened immune system of sorts due to the FMF. She seems to get every cold, virus that goes around. Has there been any research that supports this or am I just overly sensitive to how often she is sick??

Kaylea-Leanne

My 6 year old son is the same in that any cold/virus that
goes around he tends to get-his immune system seems
low. Has anyone else been instructed for their child with FMF not to get the flu vaccine? Right now my son has issues with his throat being swollen/red at lot of the time.
K.L.

FMFkid

Hello My name is Alexis and im 12 yrs old with FMF, Ive been on colchicine for four years and it helped stop my high fevers but i still get really bad stomach and joint pain. I would love to talk, if you would like to u can email me at xoalexis8@aol.com
thanks and i look forward to hearing from you!! :)

Marissa23

HI there, I do not have fmf but I do have an unknown periodic ever syndrome and have similar symptoms of FMF and traps. It seems I too get every cold or flu that comes around. Kind of like my immune system is weak. Iv also been told that when on enbrel your immune system can be weaker. Which makes a cold or even having a cut or scrape last longer than usual. If you ever want to chat or anything I can do to help you. Just let me know!

-Marissa

RushRx

Hey there, my name is Stacy, my son has a hybrid between TRAPS and FMF (they think) His genetic tests came back positive for TRAPS although he is responding very well to colchicine. He too gets sick often, but then that can bring him into an episode. Not the other way around. The colchicine has helped with lowering the fevers, they were around 105-106 degrees, now they are lower but the abdominal pain during an "attack" is still severe. My suggestion is when you know of kids around you with strep, or any virus, KEEP AWAY! I do! Hope that helps. I am very excited, I am seeing Dr. Kastner for the first time June 9th. Hopefully we will get some new answers!

paula_mosseri

Hi FMF moms and kids. It is nice to see so many people out there with similar experiences. My daughter is doing better since we increased he medication. She still has episodes and misses school, but there fevers are very slight, knee pain and tummy pain are the worst problems. She shows a pre-episode reaction of worries and anxiety. She will also have one when there is alot of stress in her life. Anyone else seeing this? Take care! Paula

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