15 year old living with TRAPS

My daughter, who is 15 years old now, has been suffering from fevers mainly since she was 11. She was diagnosed recently with TRAPS. After years of seeing a Rheumatology specialist and having a genetic test done a year ago, they've finally made a call on her condition.

Written by Lana, published about 1 month ago.

My daughter suffered from a high fever at the age of 11 for over a month. She also had a two week episode when she was 5 years old but we were told that she must have had a virus. I remember that she would get low grade fevers every now and then but no other symptoms but it wasn't too often. Maybe one a year. Thought it was just her way of fighting off sicknesses. Overall she is really healthy and active. She plays volleyball and works out on a regular basis. She has normal development. During her big episode when she was 11, she was seen by an infectious disease specialist at Children's Hospital in DC. She had all kinds of blood labs done with the thought that she had lime disease. After she was cleared of everything under the sun we were referred to a rheumatologist at Children's with suspicion of periodic fevers. Now we had to figure out which one and how to stop the episodes that would last for weeks. Finally a year ago we tried prednisone and it worked great. Then we tried Kineret which did not work. We are about to try Colchicine which I've read doesn't work on TRAPS but willing to try it before we move on to trying Enbrel. Unlike most common TRAPS symptoms, she only gets joint pain in her wrists/knees and ankles, headaches and low grade fever. The genetic test shows she has the R92Q mutation. I've also read that they have seen that as children get older, adults, they tend to have fewer episodes or they are gone altogether.

Here is the link to that article: http://onlinelibrary.wiley.com/doi/10.1111...
Other links with good info is: http://www.ncbi.nlm.nih.gov/pubmed/21225694
http://www.ncbi.nlm.nih.gov/pubmed/18408954

I'm trying to figure out a diet for her. We've tried gluten free but nothing changed. She loves milk so I'm thinking about switching her to non-dairy. The rheumatologist said diet won't make any difference since this is genetic but I would like to try anyway. Can't hurt!

She has learned how to deal with this disease and she knows days before an episode will start. She can feel it in her muscles and overall how she feels. She gets tired and get chills even though she doesn't have a fever yet. Motrin is the best for her every 4-6 hours.

I know it can be draining on her and mentally she get a bit depressed when she's not able to do much during the flare-ups. We've learned ways to keep her spirit up and she appreciates it.

I hope my story helps someone. I felt like we were the only ones going through this sort of thing but now I see it is a topic that people are sharing about and that at least gives us some comfort that we are not alone.

Written by Lana, published about 1 month ago.