Hi, I am glad to have found this place. My Daughter was just diagnosed with TRAPS. I am trying to read all the literature I can find. I was a little shocked by the diagnosis because her neuro doc was actually thinking she had a mitochondrial disease, but her rheumy had done tests for TRAPS, FMF, and another? a few months ago just to rule them out and they came back last week with a mutation for TRAPS.
I have 3 questions (for now- I probably will have a million questions)
1. Is it common for TRAPS to be confused with a mitochondrial disease?
2. My daughter has a very severe episode two years ago with a fever of 104 for 8 days straight- nothing would bring down her fever (nothing ever brings down her fever when she has an episode which is every 4-6 weeks- but the very high spiking fever usually only lasts 3 days with the lower grade fevers lasting much longer. Anyways- after that episode two years ago, Caroline has severe neurological decline- she could no longer tie her shoes, pedal a bike, didn't know the days of the week.. she went from the gifted and talented kindergarten class to "not meeting benchmarks" within a matter of 2 months, and is now covered under the special ed umbrella with an IEP and modifacations for educational support. SHe has begun to gain back skills and is starting to make progress in school again!! but I worry that this will happen again and again with the episodes getting worse?? Have any of you dealt with this with your children? is this common with TRAPS???
3. after every fever episode, once the fever breaks, Caroline's palms and soles peel! yes skin just flakes and peels off the palms of her hands and the soles of her feet. Is this a common symptom of TRAPS??
Thank you for taking the time to read my post and any help you can offer would be greatly appreciated.
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New diagnosis of TRAPS
Explore topics in this discussion:
Exercise Tylenol Arthritis Hydrocephalus Nystagmus Seizures Sweating Fever Rashes TRAPS Pain Folic acid
8 replies
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- By jan
- Posted December 13, 2006 at 7:35 pm
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Hi,
I am so sorry to hear about your daughter's difficulties. Sometimes Periodic Feves are confused with mitochodrial diseases because often times the children lack energy or seem to get weaker with exercise. The mitochondria provide energy so it makes sense to consider this. It is not common to my knowledge to loose milestones as Caroline has after a TRAPS flare. I suspect the doctors will be working with you more tounderstand how best to help your daughter.
Good luck to you and your daughter.
Jan
- By Kare
- Posted December 15, 2006 at 1:56 am
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Hello,
I have found this site to be an unbelievable source of support for myself time and time again. My son was diagnosed with TRAPS last August. Which mutation does your daughter have? I know there is all sorts of different information/concerns with different mutations. Personally, I have never heard of TRAPS being confused with mitochondrial disorder. I had two students in the past who had mitochondrial disorder and their symptoms never involved cyclical fevers, nor did they have many of the symptoms my son has. They both had neurological decline, as well as, seizures. My son certainly had physical decline, affecting his gait and stamina, as his episodes continued to progress. Also, in August when he had an attack he become very neurologically altered and had a febrile seizure. He was hallucinating and speaking all sorts of gibberish.
My little guy will sometimes have "peely" toes after an episode and sometimes a bit of peeling around his nail beds. The docs. in January really took notice of this because when we first started investigating this whole process one of the considered diseases was Kawasaki's (I hope I spelled that right) Disease. I think he gets "peely" because his body is just so dry during his attacks. His fever does what your daughter's does, really high for the first three days and then better managed by the Tylenol for the remaining two days. His temps. can get as high as 106 degrees.
What medications have the docs. tried for your daughter at this point? We just started Etanercept in August. We tried a whole pile of different ones prior to that. So far, the Etanercept has made the biggest difference. He certainly is getting a whole lot more relief in between febrile attacks from his painful joints, and he is a much happier kid. How old is your daughter and how long have you been trying to get things sorted out for her? The whole process of diagnosing TRAPS can be a very long one. I hope what I have said helps and when you have more questions, as I'm sure you will like I did (and still do) we can talk more. Take care and talk to you soon,
Karen
- By lineysmom
- Posted January 4, 2007 at 5:39 pm
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Thanks to both of you for your replies! I am sorry it has taken me so long to get back on here- Life has been quite hectic.
Caroline's mutation is new, we are still waiting to speak to the geneticist about what this means, what meds he would like for her to try, ect... I have a feeling he will actually send us back to the rheumetologist for treatment options, which would be fine with me because I really like the rheumatologist- she is very easy to work with, very accomodating, doesn't rush us out, I am loaded with questions but the genetics team wanted more testing done before going into too much discussion and they wanted us to see a different geneticist- the one my son sees. It is a very long story, but in a nutshell- our little guy who is 4 has had many health issues since birth and has been through the wringer with testing. He has a shunt for hydrocephalus, and about a year ago his neurologist thought he might have NOMID/CINCA- he was also clinicly diagnosed with FG by a renound geneticist- but no tests to confirm this. Anyways, then Caroline began getting ill about two years ago and started to have neurological regression with illness and it was suggested to us that she had a mitochondrial disease so we took her to a different geneticsit than the one Ty sees because this one was a specialist in mito diseases. Now since this test has come back with this mutation- the mito geneticist wants us to see Ty's geneticist so that he can also test Ty to see if he has this as well. It is very confusing.
Caroline has a ultrasound of her bladder, kidneys and liver and a VCUG next wednesday- the genetics team ordered these tests due to problems she has been having with her bladder and kidneys and once those results are back we see Ty's geneticist with both children, for some answers (hopefully) and probably then wind up back at the rheumatologist?????
I think it is strange that the neurologist felt Ty might have NOMID (which he was never worked up for because we have been focusing on Caroline so much this year trying to get her feeling well. Ty has many signs of NOMID except his rash is fairly minor in compairison to the other issues he deals with. I can't imagine it would be possible to have one child with NOMID and one with TRAPS and Ty does not fit the bill for TRAPS as far as I can see??? He certianly has an issue with inflamation but he does not have the spikey fevers like Caroline or the arthritis. Well, I guess we just have to plug away with the docs and get this figured out?
Thanks Again! I know I will be back soon with a few more questions.
- By Mel
- Posted January 5, 2007 at 6:16 am
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Hi
I am a 58 year old woman and came across this site some time ago while looking for support groups. I have had episodes/flares for the last 50 years. I am waiting for my test results (I live in the UK) so can't say for sure that I have TRAPS but it is looking like it.
There is another support site that I get a tremendous amount of support from - there are adults and children with FMF and others with TRAPS (most members seem to be in the US but we are in contact with others all over the world.
I don't know how to do the link with the underlined address but it is
fmf_support@yahoogroups.com
My symptoms are not the same as your child as I have the fevers but it affects my abdomen, (peritonitis) lungs (pleurisy) with raised ESR and other inflammatory responses......
Good luck with your little ones
Mel
- By Jordensmom
- Posted September 19, 2007 at 3:09 pm
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Hello,
My son is being evaluated for TRAPS or HIDS also. I would like to talk with you about the different symptoms your daughter has, as my son has had neurological problems after flares also, and also peeled after a very bad flare (his first bad flare). He had fevers to 104.5 for 14 days that would drop in the afternoon and spike at night. THen the fever was low grade for several weeks after. HE also had rash, swelling, hives. His flares now aren't as long but 3-5 days of high fever with another 5-7 days of low grade fever with myalgias, swelling, eye problems, and rash/hives. Inbetween flares he has migratory hives, eye swelling, myalgia's and someitmes mouth sores.
He had a strong neuro decline after first flare, with: lost his language/words, lost ability to initiate eye contact, started having balance problems. He has had a seizure of unknown origin (non-febrile) and also loss of motor control and weakness/las muscles. He also has verylas/hypermobile joints. Does linsey have any of these issues? I would like to talk.
Krissi
- By Jordensmom
- Posted September 19, 2007 at 3:18 pm
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wow I should proofread my coments. his muscles are LAX not las, as are his joints. He also has regained his language but is very delayed, his eye contact issue resolved also. I think he gets pins and needles at times just by his behavior, and he also has some hearing loss in left ear. We are awaiting the genetic results. But I would still like to talk to others with these syndromes as I find them confusing to navigate by JOrden;s synptoms.
- By lineysmom
- Posted October 6, 2007 at 2:54 pm
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Hi! I'm sorry it took me so long to reply to you- I havn't been on the computer much lately.
My daughter, Caroline has quite similar history as your son- she had a very bad flare in Nov of 2004 it lasted 14 days and she had a fever of 104+ for 8 of those days- following that flare she had a very obvious neurological decline. This was way before we had her diagnosis and actually this is what began our search for a dx for her. after that episode in 2004, she began having very regular fever episodes about 5 weeks apart each lasting for 3-5 days and always with the peeling of her palms and soles at the end of the fever? she also has the eye swelling and pain and she has nystagmus as well. one thing that is different with Caroline is that she has some sort of temperature instability an an ongoing basis even when not having a flare. She has pain and swelling in her joints on a regular basis as well- but it gets worse when she is in the middle of a fever flare. Caroline tip toe walks so her muscles in her claves are extremely large and bulky and she has very lax joints in her larger joints (like the elbows..) but the joints in her fingers and toes are very tight, always a bit swollen, and three of her fingers on each hand do not even straighten all the way.
We realized this summer that Caroline has a very severe heat intollerance- she does not seem to sweat like a normal person and therefore she gets overheated in the hot summer sun very quickly- twice this summer she spiked a fever over 103 within an hour of being outside playing- she was beat red with NO Sweat! We broght her in, slowley cooled her down with cool compresses, drinking water, and rest but we noticed she was confused/disoriented, had a severe headache, and later that night she had blood in her BM.
We are trying to figure out now if this is a part of the TRAPS or if this is something else? I would love to know if anyone else has noticed any problems with heat intollerance or lack of normal sweating pattern???? this is very scary!
I have been using the fish oil for Caroline for about 10 months now (along with a few other supplements like folic acid, bromilean, Vitamin B, Vit C, and a multi) and I have found it to be of great benifit to her. Her fever episodes are fewer and farther between- also her temp does not seem to spike as high?? Its hard to say if it is the fish oil making the difference or if it is just the way her disease would affect her anyways since for us it has never been completely predictable?? But her rhuemy says it wont hurt her to take the supplements and we have noticed an improvement in her neurological status since starting the fish oil.
Looking back on Caroline's years before that first big fever episode- we realize she always had issues with fevers and rashes- we were told probably 30 times that she had "hand, foot and mouth" virus due to fevers and the rash and peeling on her hands and feet? she has always complained of headaches associated with fevers and we just thought she was a kid who caught a lot of viruses?? now they tell us it was probably not viruses but episodes of TRAPS.
I hope you get some answers about your son soon- the waiting is very hard. Please feel free to contact me any time.
- By Kare
- Posted October 6, 2007 at 4:36 pm
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Owen often had difficulties with body temp. control as well. Although, his was a bit different. He would drop his temp. to well below the norm., getting too cold. His lips would turn purple/blue and then I'd take his temp. and it would be 92-94 degrees. He didn't seem to shiver either. He also does not sweat and has difficulty with fatigue when it is hot.
Owen never had the peeling hands and feet and only had one flare with a rash. (The docs. at the nearest hospital, not Children's, thought he had chicken pox of all things!!!) He didn't ever get swollen joints but certainly got the swollen eyes, the joint pain and headache. Owen has his toes that he has some difficulty with movement, it is almost as if they were fused.
I know what you mean about the docs. telling you a billion and one times that it's "just a virus". A virus that no one else gets in the house! I can look back at pictures of when Owen was a baby and I can see "attacks" as far back as five months old. He looks like a different child in those pictures. In fact, I have a photo collage of his first year on the wall and there is a picture of him in there where he is trying his first food and he is obviously in attack mode. My uncle saw the picture and said "Who is that kid"? I replied "Owen" and my uncle didn't believe me. We thought the same thing as well that he was just a kid that caught a lot of viruses as well until he flipped into his pattern of having attacks of one about every four weeks. That was after he had his immunizations, with allergy testing. He reacted to the MMR at a year so we waited until he was two and a half. Four days later he had an attack and that was the first time he was able to tell me his head and legs hurt. He didn't come out of his room for five days! The docs. chalked it up to a reaction to the immunizations. I think Owen's poor body just didn't know what to think and went into repeat attack mode... We were lucky that we were able to get answers just before he turned four. It sounds like some people wait a lot longer.
It does improve with proper meds. and dilligence of getting the right people to support your child. Keep advocating it's the best thing we as parents can do. Trust the little voice that talks to you that says things are not right and insist that someone hears what you are saying. Our children only have us as parents and their voices need to be heard. Take care everyone,
Karen
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