Patients??

• By Gcbec
• Posted May 16, 2006 at 9:17 pm
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Hello,

I am the mother of a 6 year old named Andrew. About a year ago we noticed he had lost alot of weight, was always tired, complained all the time about headaches and stomache pain, and leg pains, and kept getting fevers. My once happy active energetic little boy that loved palying sports could no longer play. His blood counts were off so they suspected Cancer after 3 weeks of tests they said not cancer dont know what it is. He was not getting better but worse. We finally found an Imunologist that had some answers, good news and bad. Good news he thinks he knows Andrew has FMF or Traps or somthing similiar, bad news our insurance wont pay for the test. Last week in a last attmept to help him, Dr put Andrew on Clotrisine? His fevers have stayed down for the most part, he has had a few really good days, but I dont think it has helped 100% yet. He is home schooled becasue he can not get through the day most of the time. The other good news is,, NIH wants Andrew in the program,, bad news they cant take him for 8 months. Our Dr is trying to do whatever he can to get him there NOW. He has been through more than any child should have to go through. I am so happy to have found this place and I hope I can get some information on what is this disorder. He is also having some kidney problems and we are set to see Neuphrologist next week. Has anyone had any other complications from disease? Thanks..

Cindy

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• By jan
• Posted July 19, 2006 at 10:42 am
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Hi,
I also have a child with a varient fo FMF. He is 10 now and began getting sick at about age 3. I would suggest you get some basic papers on FMF and periodic fever syndromes-maybe off of the fmf community website and then call back your insurance company. If the person on the phone won't listen to you then ask for their manager or the medical director. Sometimes NIH will do the testing while your visit is pending--this might work since he has been excpeted into the study.
Good luck,
Jan

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• By paula_mosseri
• Posted August 9, 2006 at 11:19 pm
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Hi, my name is Paula. I have a 7yr. old with genetically confirmed fmf. She started having symptoms at the age of 2. Her symptoms were high fever(105.0) lasting 5 days, ill for 10. Bad joint pain with some minor swelling, bad stomach pains, loose stool, reds spots on arms and legs. The blood work ups (and she has had too many to count) led her pediatrician toward reumatoid arthritis. At 41/2 yrs. she was sent to a ped. reumy, who almost instantly diagnosed fmf, I guess we got lucky. she had us genetically test her and it was positive. The test cost $600.00 through gendx labs, we were fortunate that the insurance covered the cost. We would have paid any amount to have a confirmed-or-not diagnosis. We could not keep going without one, people started thinking that I was a carzy mom, looking for problems. Since that test, my husband and I have been genetically tested and each have a different mutations, Ashley ended up with a moderate/mildly severe form of the disease. She is on colchicine 0.5 3x/day. She is now lactose intollerent, although a little does not bother her. She still gets flair ups, but with a low, low grade fever and some mild joint pain, head aches, tummy pain, mild to severe. feels lousey and misses alot of school. We actually just up her does to see if the flair ups disappear. We are also experiencing moderate compulsion habits and fears prior to a flair up. This started almost 2 yrs ago. It is definately related to the fmf. I hope to chat soon, please write and let me know what's up, share info and just help each other out. Thanks for reading. Paula

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• By Gcbec
• Posted October 3, 2006 at 8:55 am
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Hi Paula,

It is with a broken heart that I am writting this post. The immunologist found a way to get the genetic test done, he sent us to a peditrician who was able to send it to Specialty labs. They tested for the most common genes with a test kit not approved for testing yet. Anyway he was negative for the most common gene and they did not test at all for traps, there accuracy rate is 25%. Anyway, at that point the peditrician that sent the blood tests decided that I made up my sons illness and on June 10th my children were taken from us. I read in your post that at one point you thought people would think you were crazy. No one ever told us how much the test was and when the dr was able to get it done we didnt question it. We know he is still having trouble where he is, but it is not being reported. We also know that he is afraid to tell anyone he is sick, he told my mom he cant go home till he is better. No further tests have been done on him, no one is monitoring him, no one has an answer. You are all so lucky to have had people listen to you, and do the right tests.

We have not given up we are fighting as much as we can. I know they will find the answer to what is going on with Andrew, please keep us in your prayers.
Cindy

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