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I'd like to hear from anyone who has observations regarding any relationship between physical exertion (like PE class or sports related) or sleep deprivation and the coincident arrival of a TRAPS fever syndrome.
Exercise Pain TRAPS Prednisone Occupational therapy Fever Stress
I definitely notice a correlation between the sleep, the physical exertion and TRAPS attacks. The part that I am not sure of at this point is which one causes the other. My son is only four so physical exertion and sleep deprivation definitely effects him in a visible manner. What I notice as a TRAPS attack is coming is that his sleep starts to become broken by waking with pain in his legs or from a headache. The less sleep he gets the more pain he seems to experience the next day. If he is upset for whatever reason, he very often, after a crying spell will have pain in his legs, stagger, and sometimes fall down. After he has had a very physical day he will often have aches in his legs at bed time and sometimes a headache. This can then wake him at night which starts his next day off miserably, which makes him more irritable, which brings on temper tantrums/tears etc. which then causes pain in his legs, or a headache... This cycle becomes more evident as an attack is coming. He can't seem to shake off the irritability and the pain as easily so I usually know an attack is on the horizon, it just seems to be a matter of time. The nature of this disorder can be a very frustrating one for everyone in the family. My son can become very frustrated with the fact that he is experiencing pain. He will actually say as an attack is approaching that the meds he takes are no longer working. His day to day life becomes more affected as the cycle progresses, then an attack happens and we start all over again. I don't know if your son experiences similar symptoms but it sounds like TRAPS seems to affect him in his day to day life as well. How does it affect him when he is with his peers? Does he tell his friends what he has and why he can't participate in things like gym? I ask these questions because my son is only in preschool right now but next year he will be off the Kindergarten. He knows that he has something called TRAPS and the meds he takes for it. He advocates for himself very well. I just wonder what TRAPS will look like for him when he is older.
Karen
I too have noticed a similar cycle with regard to sleep deprivation, too much physical exertion, stress and TRAPS episodes. I agree with Karen that it is often hard to tell what is what much of the time though-- does the TRAPS episode get brought on by these things, or when an episode is about to come on, does it cause these things to happen (with the exception of the physical exertion, of course) before the full-blown episode is apparent? I also have also noticed that a mild cold might also bring on an episode, but then again someone once pointed out to me that a clear nasal discharge can be one of the symptoms of a TRAPS episode! Too confusing!
Since my son was started on Enbrel once a week at the end of June, none of the "usual" triggers seem to cause an attack, and he seems to be more tolerant of being tired, as well as physically (or even emotionally) stressed. When he is very tired from being very active, or is tired for other reasons, he may complain of a mild headache -- which used to be the tell-tale sign that an episode was approaching -- but no other major symptoms.
Kathy
Kathy, that is so interesting that you mentioned that a mild cold might also bring on an episode for your son. I, too, have noticed that with some of the episodes my son has had a slight cough the night before an attack comes or a runny nose the day before. I had not heard that a clear nasal discharge could be one of the symptoms of a TRAPS episode! This disorder seems so rare and complex. Yet, with the people who have connected with this site about their children their symptoms are so similar, unbelievable!
I would also agree with Kathy that since the Enbrel has been started my little guy has been much more tolerant of stress, sleep deprivation, and physical exertion. He does, as I said, earlier, complain of mild headache or leg pain but nothing like it was before.
Karen
Hi Karen,
I hope all is well with you and your family. From the sound of your latest entry, it seems as though the Enbrel may be working for your son? I certainly hope so!! Has he had any more episodes recently? Have you noticed any changes since the stopping the prednisone?
My son's hives didn't occur again, even though I thought they might when I noticed that rash on his arm. He has since received two more dosed of the Enbrel with no problems, so I can assume that the hives were caused by the cold virus and not from the Enbrel. Whew! The only other time he has had rash since being diagnosed with TRAPS was a couple of years ago during a particularly bad attack where his CRP was above 240, his Sed Rate was 50-something, and all of his other labs were out of whack as well. Of course, he also had a fever and a sore throat, and I thought that maybe he had a strep infection which can cause a rash if it's not treated in time. Everything came back negative for strep, so I am guessing that it was the one and only time he might have had TRAPS rash. Sometimes it is just difficult to make sense of things when dealing with all the variables of TRAPS, eh?
We have an appointment for a check-up with my son's rheumatologist this week, who we haven't seen since before our trip to the NIH last June. I am so glad that the Enbrel seems to be working well for my little guy, but I still have some questions that I am anxious to discuss with his dr. when we see her. Before our trip to the NIH, she was really on the fence about starting the Enbrel, and basically deferred that decision to the docs at the NIH. I do know that she was part of the clinical trial for Enbrel a few years ago, and may have some better insight and more specific answers to my questions about it. I'll keep you posted if I find out anything interesting!
Take care,
Kathy
My son received the diagnosis for TRAPS in the beginning of 7th grade. My observations during the previous year of how intense exercise during strenuous PE classes provoked the fever cycle within 2 hours (or certainly overnight) were validated by his school absentee record and the gym teacher who compared her curriculum notes with his dates of absence. Still. it was difficult to convince my ped or the local Rheum because the available published documentation citing such a relationship is limited to only one or two lines about what can bring on a flare related to "physical, emotional stress, or nothing at all." Yet, there are several published articles available through Pubmed that cite relationships between exercise and cytokine production, including TNF, IL1 and IL6. There are similar articles that measure increased cytokines after sleep deprivation. Most of these studies are originated from Sports Medicine and Physiology Departments. Since they do not specifically cite TRAPS patients in their studies I guess we can't directly connect the dots to our kids, and our doctors are reluctant to make inferences from these articles either. In spite of my child's record relating PE rigors with his absentee dates, my ped at the time wouldn't help by writing any kind of letter to the school district to modify his PE in any way. At that point, I told him I didn't need him anymore and found a different ped that we still work with nearly 4 years later.
I was lucky enough to have the local Rheum. write a letter to the school district suggesting that PE could exacerbate febrile attacks. The district reluctantly complied, but still questions it every year. The high school allows my son to get PE credit for logging 90 hours/per calendar year of any type of physical activity, including walking to/from school or walking the dog. They will even give credit for attending any live sporting event or Boy Scout campouts.
As far as how my son has dealt with his peers, he explained how exercise makes him sick for 5 days at a time because his immune system reacts to the chemicals that the body makes when you exercise. He explained that his body can't tell the difference between the "exercise chemicals" and a legitimate invader like a bacteria or virus. Kids are smart enough to put together what their own parents have taught them about how not to get sick and basic grammar school science classes. Explaining to his friends how he can miss so much school from the frequent cycling of this disease and still maintain such good grades is more difficult. He's incredibly gifted and our grammar schools just weren't that challenging.
Socially, it has been very difficult. He describes how when he goes back to school after a fever flare, it's as though the lunch table buddies are all talking about the movie they saw without him while he was gone. They accept him at the table, but he's really not part of the gang. He's missed so much. It was very difficult to maintain weekly music lessons because of the frequent flares. Lots of lessons were paid for that he couldn't show up for. He also missed several greatly anticipated school functions.........band concerts, state music competitions, Geography Bee Championship, school field trips. Even final exams have had to be rescheduled, all beacause of the poor timing of a TRAPS episode.
Hi Althea,
I so know what you mean when you say that TRAPS has poor timing for its episodes. How often does your son have atttacks? My son has had sixteen attacks in sixteen months. He has them anytime between three and eight weeks, six weeks seems to be the average time frame. Although, when it is cold and flu season he seems to get attacks closer to the three week mark. My son started Enbrel in August. This drug seems to be offering him the best relief out of anything we have tried so far. He is only four but he takes having needles regularly without a hitch. He is a very brave little soul. Is your son on any meds to try to deal with his TRAPS flares? Our lives can be very affected by when, or if, our middle one has had an attack or if he is coming up to one. I also know about looking for the right support people to assist your child. My G.P. kept telling me that my son was having viruses repeatedly every month. I kept saying this is every month, no one else is getting this, what two and a half year old child complains of such extreme head ache and leg pain... This is not normal!!! Finally, after attack number eight I insisted we do something different. We went to the first ped., he sent us to Infectious Diseases at Children's Hospital, who sent us down the road of Periodic Fever Disorders, which eventually got us to the Rheumatology Team who worked side by side with Infectious Diseases, then Occupational Therapy to deal with the falling and Physio. and on and on it goes. What a team we have for one little child!
Your son certainly seems to have good strategies for talking to people about TRAPS. Being a teenager and coping with an unusual disorder is really hard work. It' s a terrible feeling to feel like you are out of the loop. Does he have a large group of friends or just a small group of close friends? Kids have enough to go through in life never mind having to deal with pain, and illness cycling through their lives. Does he have any support places other than home to talk about what he goes through? Or is home enough for him for support? The trouble with TRAPS is there really isn't a local place for us to go to get support from others who have or are dealing with the disorder. It's hard to put yourself in our children's shoes even for a day. Thanks for answering some of my questions. This disorder can be quite consuming if one lets it. I'm so glad I found this site to put my questions out there to people who actually live with this thing called TRAPS.
Talk to you soon,
Karen
Hi Kathy,
So far, so good. Things are settling into routines around here and life is moving on. No episodes since the end of September. The Enbrel is certainly helping his leg and head aches and pains so far. The last attack was not a severe one and he recovered very quickly. His usual recovery time has been getting longer and longer to get over as he has continued to have attacks. He is a much happier kid off the Prednisone, less moody, more apt to join into group activities at music class and Preschool. That's so interesting that your son did have one attack where he had a rash. My son also had one attack where he had a rash. The doctors at the local hospital (not Children's Hospital and it wasn't a pediatrician that saw him) thought it was chicken pox!!! My guess was it was a TRAPS thing. That attack was a particularly ugly one too. Has your son ever been admitted into hospital for his fever stuff? TRAPS variables are crazy to deal with!!!
Please let me in on anything new you find out. My son's pediatrician had to look up all the information about Enbrel and the Rheum. docs at our Children's Hospital had to phone to Finland, I think, to find out about dosing a child his age and size... Too crazy!! Good luck.
Talk to you soon,
Karen
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