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Daughter diagnosed with TRAPS

silky
  • By silky
  • Posted December 18, 2008 at 2:52 pm · 9 replies
  • Shared with the public
0 Recommendations

My almost 3 year old daughter has been diagnosed with TRAPS R92Q mutation and is being followed by Dr. Kastner.

Explore topics in this journal entry and replies:

PFAPA TRAPS Pain Prednisone Sarcoidosis Methotrexate Fever Nausea and vomiting

9 replies

marylouise

Dear silky,
Hi! How is your daughter doing? What are her symptoms and how often do they occur? I have two daughters with TRAPS, and I am anxious to learn more and to see how others are affected. I wish your daughter the very best.
marylouise

Marissa23

Hi there my names Marissa, I do not have traps but I have many symptoms of it and do have an unknown periodic fever syndrome.I have been dealing with it since I was 6 years old.I also have been followed by Dr. Kastner, I know how difficult it can be for you and your daughter I wish the best for you. If you ever want to chat Your more than welcome to contact me.

gt4990

Hello, My daughter Breana has been seeing Dr. Kastner since she was 2.5 yrs...now 8! we travel in every 3-5 months from New England. She does not have TRAPS DX....autoimmune infamatory disease unknown etiolgy.....we were just PFAPA for many years until she started having visiable inflamtion.
Yes this is a VERY frustaring road but u are not alone! Please drop me a line if u would like1

kelgirl

Dear Silky,

I hope this note finds your daughter and you well. Our daughter was about the same age as yours when she was finally diagnosed. It seemed to take forever....she has TRAPS-R92Q as well. She is now 8 years old and is doing very well considering. Dr. Kastner and the entire group have been treating Kelly for 6 1/2 years and they are wonderful. We travel to the Inn about every 3 to 6 months it changes as Kelly's needs arise. Enbrel has worked wonders for her....due to some recent illnesses discussions have started to switch to anakinra. Enbrel has helped Kelly's symptoms so well we are not anxious to make the switch. If you should ever need to talk or have any questions I am here....this is my first post to any discussions... our daughter is getting older and I feel it's time not to be afraid to talk about everything and stay as informed as much as possible... Our son is presently being tested he is 9. Hope all is going well.

Kelgirl

marylouise

Dear Silky,
I am sorry your little girl has been through so much. So young; it is just not fair. It is wonderful though that you finally got a diagnosis and found a rheumatologist who can help her. Interestingly enough, I have two daughters with the same mutation. They are now adults. My oldest daughter responds well to Enbrel. She is not symptom free, but she can function at a high level on Enbrel. My youngest daughter did not have a great response to Enbrel, but seems to be doing better on Kineret injections. Medicine is at the frontier of discovery with TRAPS. There is so much to learn, but I do have great hope for the future. I will pray for your daughter. I believe the best is yet to come. Hang in there.
Mary Louise

silky

Thank you. We have been through the ringer, but as you know, it is what it is I guess. She is currently at the max dosage for her Enbrel and does see Dr. Kastner at the NIH along with her rheumatologist. At her next TRAPS flare Dr. Kastner wants to admit her at the NIH for testing and a cocktail of medications to try for her. For Maddy it is like filling a pot with water. Eventually no matter how much Enbrel she is on the inflammation just keep "filling up" until it spills over with a big flare and then just keeps happening every week. The prednisone breaks the flare, but it just keeps happening. Increasing the Enbrel helps her for about 3 months and then it's almost like her body gets used to it. This past April she was admitted in the hospital for one her many admissions for TRAPS flaring inflaming her lungs as well. They actually had her on IV solumedrol(prednisone) and then a 5 month oral pred. course after that. We are in the process of also comfirming Sarcoidosis for Madeline of the lungs which would explain all of the lung issues she also has. It has been a lot for her and us, but it is as though the TRAPS triggers the lung inflammation(oral rednisone resistant) and the lung inflammation triggers the TRAPS. We get caught in a viscious cycle. I believe the thought is to add Methotrexate to the Enbrel (affective in Sarcoid and TRAPS) and larger extended months of prednisone as well for her flares. So tiring.

I would love to hear your story for how your children's sx began and also how you decided the Enbrel was not working, How is the other medication working for your daughter? Does she still have the milder daily inflammation aside from the big flares and fevers??

Karen

silky

Hi,

I am so sorry that I have not responded until now. I signed up on this site after first visiting Dr. Kastner at the NIH. Since then, things have really become a whirlwind as I am sure for you as well. I am so glad to hear the Enbrel has helped your daughter. I do hope that she is still doing well with the medication. I just posted a message a few minutes ago and I think you can see it as well. Our daughter Maddy is not doing great with the Enbrel for extended amounts of time and we are at the max dosage for her age/weight. We are currently awaiting a PET CT SCAN to confirm Sarcoid of her lungs as well. The doctors think the 2 diseaes are bouncing off of each other making her symptoms worse than they should be.

Hope your daughter is doing well :)

Karen

marylouise

Dear Silky,
Oh my Goodness! Your daughter needs a break. I will be praying that she gets one very soon. My youngest daughter was in and out of the hospital with TRAPS for several years before she was diagnosed. During one of her hospitaliztions a CAT scan revealed fluid on her lungs. They also thought she had pulmonary lung disease. The Mayo clinic reviewed her CAT scan and said that the fluid was from inflammation. I know TRAPS can cause inflammation of the lungs, but you are describing a relentless vicious cycle. I am so sorry for what you are all going through.
You asked how we knew the Enbrel was not working. We knew because even though her episodes were not as severe on the Enbrel, they were still quite disabling. They were occurring about every six weeks and were lasting two to three weeks at a time. In between she would have breaks from the fever, but she still had other painful symptoms of inflammation ,as well as muscle pain. She was eventually put on a double dose of Humira with once a week injections, as opposed to every other week. That did not work at all. During a flare up in March when she was on her twelth straight day of fever and other symptoms, they decided to put her on prednisone. That worked wonders, but every time she would taper down the fevers and other symptoms would come back. It was to the point that she was not periodically sick but constantly sick. She was then put on methotrexate along wiith the Humira. She had another flare of TRAPS in her fourth week of methotrexate. She was then dealing with nausea and vomiting and could not tolerate the methotrexate. Maybe in time it would have worked. The doctor said she was on a very low dose and that it could take several months to take effect. Due to chronic nausea, she never resumed her methotrexate. She was switched to daily Anakinra injections in August. They seem to be helping quite a bit. She has only had one TRAPS episode since. This occurred about two weeks ago. She took prednisone when she had the episode.
I pray to God that they get to the bottom of Maddy's lung issues. The testing she is having is very sophisticated. I am hoping and praying that you get a good report. May God pour out His love and grace on Maddy and the rest of the family.
Mary Louise

silky

You are so sweet. Thank you for all of your kind words. I will have to ask about Anakinra when we visit the NIH. I guess things are a little tricky with the possibility of adding in a diagnosis of Sarcoid. Her rheumy originally suggested if the Enbrel stopped working that she would stop Enbrel and try a different medication that is new and I cannot remember the name. However, now he says that if she has Sarcoid that Enbrel is a drug of choice, however adding the methotrexate would be a good addition and hopefully would also help the TRAPS. He did say that it would be better for the Sarcoid, but for the TRAPS it may not be as effective and they just have to see if maybe things would still be better becase maybe it's the Sarcoid making the TRAPS worse than it might be otherwise. All trial and error I guess. He did say that stopping the Enbrel and trying a different concoction of meds. that would be better for the TRAPS would actually be worse for the Sarcoid. I guess we'll just have to wait and see. Don't you feel like you could already be a doctor?? My question to you since your children are older than my daughter is the long term as well as school. Has this affected their school in terms of missing time due to joint pains or just not feeling well??

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