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Trying to find out how this disorder may change

Kare
  • By Kare
  • Posted September 9, 2006 at 10:41 am · 35 replies
  • In TRAPS
  • Shared with the public
0 Recommendations

Hello everyone,
I just recently found this site and I can't believe that others have the same stories as our family. My child has just recently been diagnosed with Traps. He is three, soon to be four. He has had fifteen acute attacks over fifteen months. I now know what one doctor meant when he said you don't want too many people to get interested in your story. We have been to so many appointments and seen so many people just to try and manage my child's disorder. He has been hospitalized three times within this last year to do tests to try and figure out what is happening and to try to manage his pain better during flare ups. He gets a migraine, terrible leg/knee pain, stomach and bowel involvement, eye inflamation which makes him sensitive to light, and sometimes finger, toe, and arm pain. With this latest attack in August we were in Children's and the genetic information just came back. Apparently his genetic mutation is P75L, with a heterozygous change of C-T in exon 3. There is not one rheumatologist at our Children's Hospital who has actually dealt with a child with Traps so we, as long as the doctors, have been doing a fair amount of research. We have recently started Entanercept with our son. Does anyone else have a small child out there taking a sub-q drug? I also wonder if anyone knows of any side effects from Entanercept? No one seems to reallly know the subtle side effects of the drug because it is so new. My other question in this long winded discussion is how this disorder may change as my son gets older. He gets a fair amount of leg and feet pain when he is not in an acute attack that can cause him to fall. I worry about when he starts school how to describe this thing called Traps. It's hard enough to describe at preschool. I think those are my major worries. If anyone has some experience with this please connect with me. This is the first connection I have had with anyone with anything like our situation.
Kare

Explore topics in this discussion:

Cancer Tylenol Motrin Colchicine Anxiety Chemotherapy TRAPS Rheumatoid arthritis Prednisone Influenza Arthritis Gabapentin Confusion Ibuprofen Juvenile rheumatoid arthritis Fever Multiple sclerosis Rashes Cytoxan Pain Amyloidosis

35 replies

ko

Hi Johanna,
I am so glad that the discussions regarding TRAPS and Enbrel have been helpful to you! I have found this site to be very helpful and supportive too.
My son and I were at the NIH last week for his first follow-up appointment since starting on Enbrel last June. Up until last week, he had only had a few very, very mild TRAPS episodes since starting on the Enbrel-- which were pretty much eliminated with just one dose of motrin. Since we are no longer giving him prednisone, and he has been virtually pain and symptom-free since starting on the Enbrel, I, like Karen, have not noticed any negative behavioral side effects (other than the normal 6-year-old stuff, that is!), and he certainly has LOTS of energy -- which I think is just normal for a kid his age who is feeling good!
My little guy has gained 4 pounds since our last NIH visit (and now weighs a whopping 46 lbs!), and actually did have his first big TRAPS episode since we started the Ebrel (which started coming on during our airplane trip to his NIH appointment), so they increased his dose to .35 ml of the 50mg/ml concentration once a week -- which of course would be .70 ml of the 25mg/ml concentration. Often the dosing is not only based on the child's weight but on the severety of symptoms as well, so what works for one child might be different for another.
I hope your daughter is doing well on the Enbrel so far. As scary as is it is to have a child on such a powerful drug, the difference it has made in my little guys (as well as our family's) quality of life so far has been amazing.
Take care & please keep in touch,
Kathy

Kare

Hi Johanna,
It was definitely a major decision for us to begin using Etanercept. My son takes .50ml twice a week at this point. The dose he started at was .25 twice a week in August. He has had two more attacks while on that dose that is why the rheumatology docs. bumped him up to .50. He did have less frequent attacks while on the .25 with less G.I. involvement.


I'm not entirely sure about the behavioural side effects. He certainly is far less irritable than when he was on the Prednisone, less moody as well. He definitely has a whole lot more energy to the point that some days, all he does is hop!! I'm not sure if that is the Etanercept or that he just plain, old doesn't hurt so badly all the time any more. I think it may very well be the later, because I remember how my oldest son had endless energy at four and I look around at preschool and my little guy actually is moving like them now. God help us all!!

Do you use Emla cream before doing your daughter's injections? We found that to be very helpful. It's a topical anesthetic, if you're not familiar with it, I highly recommend it. Hope this information helps.
Karen

Johanna

Kathy and Karen -

I am a mom of a 5 y/o daughter with TRAPS. I wrote in a couple of months ago. After much diliberation and attacks coming too frequently on Prednisone, we just started Enbrel three weeks ago at the recommendation of NIH. I am thankful to both of you for sharing your stories. I have found much comfort in our decision from reading your discussions with each other.

I was wondering if you could provide me with a little info regarding your experience with Enbrel. So, far so good, with little noticable side effects. My daughter is taking .75 ml once a week? How does that compare with your dose and have you noticed any negative behavioral side effects from the meds? I cant help but think she seems to have almost too much energy if you know what i mean!

Thanks - Johanna

jan

Hi,
I was just looking over the discussions and it felt good to see other parents worried about the same things!
Our son has what they are terming a mix of FMf and Traps--rare among rare I guess.
Anyway, he has been on the same medications you are discussing. The Enbrel lymphoma risk as a long term possibility does scare me. I am a pediatrician and I just can't imagine that an immunmodulator is a good thing in a developing child. When I have tried to find anything on patients who have just been on enbrel without previous chemotherapy exposure like cytoxan there is no data. All of the lmphoma outcome data is from patients, adults specifically, with severe Rheumatiod arthritis. Cytoxan is known to increase the risk of lymphoma so it really makes the results hard to figure out. There is no group for comparison in kids or adults that have just been on Enbrel and prednisone or colchicine. I wish we knew but we don't.
Max is now 11 and able to function most of the time really well. He can go weeks without feeling miserable now and only has fevers at night. In the end we chose quality of life and the ability to be helathy enough to grow over having certainty regarding the medications.
I hated having to make this choice for my child.
Anyway, I am glad there is company on this journey.
Jan

Kare

Hi Kathy,
Thanks for the positive thoughts, two more weeks and we've gone past the longest episode. No, you havn't gone off the deep end. Some days, I really worry and then other days I am o.k. with things (or at least I can put it on the back burner to simmer for a bit). We don't have any history of TRAPS in our family, either. We're just waiting for my husband's and my genetic blood work to come back (that in itself is taking forever!) The test for TRAPS was the last test the docs. did for my little guy as well. What a shocker when the tests came back... We were in hospital when the "fellow" doc. came in and said we have some information back. Both my best friend and my parents were there when he said "there was a gentic mutation along, etc." Then there was more discussion and I suddenly realized he was handing us a diagnosis. My friend said the look on my face was one she'll never forget. After all that time and agony of admissions, and tests, and more tests here we were with the diagnosis of TRAPS. Now as the Etanercept is doing it's thing and appears to be having some positive results, it's confirmation. Who knew? Your story is so similar to ours. Sometimes it seems so unreal and then when you hear another person saying the same thing you can start to believe that you might not be just another "crazy mom". Glad to have you and thanks for writing back. Talk to you soon,
Karen

ko

Hi Karen,
So nice to hear from you, and I am so gald that your little guy is in his 7th week without a TRAPS episode! Isn't that amazing? I am sending positive thoughts your way that there wil be many, many more episode-free weeks to come!
Thank you for sharing your thoughts and concerns with me about the Enbrel, as I am relieved to know that I haven't completely gone off the deep end with worrying about every little (and not-so-little) thing! I know what you mean too about the fact that since the Enbrel seems to be working so well, that it truly brings the reality of a life-long diagnosis of TRAPS home. As far as we know, there is no history of TRAPS in our family, so when our son's doctors suggested the test (and it was the very last thing of a long list of things he had been tested for) we certainly never thought it would come back positive. But, here we are and at least we know what it is and at least there are some treatment options that appear to be working to control the symptoms and inflammation. As risky as it may or may not turn out to be, there's no question of the much-improved quality of life that Enbrel has offered so many with TRAPS and other inflammatory conditions.
I've got to run now but just wanted to say hello and thanks again for your thoughtful response! Take care and talk to you soon,
Kathy

Kare

Hi Kathy,
I am so sorry that I havn't been able to get back to you. I teach special education and it's report card and Individual Education Plan time and all the meetings that come with those... I am finally done except for the fine tuning so I am back to write a response.
I am so excited for you and your family that your appointment went well. That's great that your son was able to come off of the Colchicine. My little guy was on Colchicine as well. This drug was also tolerated well by my son. The problem that we found was that it did give him some relief from pain symptoms but only for a few hours. It was quite bizarre. He would take the Colchicine at eight in the morning and you could see relief happening for him in about half an hour and then by eleven o'clock the meds. would start wearing off. Colchicine also did nothing to decrease his inflammation markers in his blood work and it did not stop any of his attacks. The rheumatology docs. took my son off of Colchicine in August when he had the horrendous attack that gave him terrible neuro. compromised symptoms. My little guy would actually tell anyone that would listen to him that the "Prednisone and the Colchicine aren't working any more". He has yet to say that about the Enbrel. He actually knows when it is his "needle night." He'll say "it's my needle night tonite" and he's always right. We just went for our Rheumatology appointment at the beginning of November. When I mentioned that my son seems to know when it is his needle night without any prompting from us she said that older patients who take Enbrel have said that they do have physical sensations of pain relief from taking the drug. I guess that must be what is happening for my guy. He knows his body better than any one and he is his own best advocate. He has gone seven weeks without an attack. (The longest he has gone is eight weeks). He has actually had a minor cold a couple of weeks ago and he started and finished it like a regular cold instead of blowing into full swing attack mode! As soon as he started to sniffle and cough I held my breath and waited and nothing came about from it. That's the first time that he has had a regular cold in seventeen, maybe even twenty months...
I, too, have had many concerns about my son taking Enbrel. I, like you, have a ton of medical information floating around in my brain. My job has led me to many places, working with many different children who have neurological impairments and challenges. I have seen children start new drugs, that are experimental in nature, and the side effects that those drugs can inflict. Knowledge can be very dangerous and a source of anxiety when it comes to your own child... Something that also bothers me, and I know this is a strange thing to have crossing over and over in my mind, is that as Enbrel proves that it is working it confirms the diagnosis of the life long disorder of Traps. Traps was such a far out diagnosis when the docs. were throwing out ideas but I do clearly remember back in January, Dr. Petty saying I think this is Traps. I also clearly remember three other docs. disagreeing. I remember looking at the limited information I had and thinking this could be it, but how can it?? 'Lo and behold here we are looking at this Traps thing and all it entails. My son is only four and we're looking at a lifetime sentence for him? That bothers me every now and again. I, like you, am loath to the thought at having to give him a drug that is so new and has so little history behind it. But, who am I to question what is possibly working for him? The Rheumatologist was very pleased that my son's inflammation markers were closer to normal and that he had finally grown a little bit and put on a pound. We had to go and buy a new car seat because he finally grew that one little cm. so now he is too tall for his car seat but way too low on the weight scales to go into a booster seat. Oh well, what can you do? The rheumatology team seems to think that my son will start to grow as long as his inflammation stays under better control from the Enbrel. He has worn the same shoe size for the last year. Who knows what the future will bring?
When we started the voyage with taking Enbrel the docs. did tell us the same information about the lymphoma links. They also addressed the M.S. connection and it was explained to my husband and myself that an M.R.I. was never done on those patients who presented with the M.S. symptoms until after they started taking Enbrel. So, it has never been clear whether the M.S. was there before taking Enbrel or caused from the drug. The docs. did an M.R.I. on my son prior to starting the Enbrel to know for sure if there was any M.S. like signs so we know for sure that he did not have any signs of it prior. I can only hope that those other patients did have symptoms prior and no one knew it. I just have to keep going with the flow or else I could go a little nutty I think. Your team sounds very much like our team because it was also presented to us that the continuous inflammation that was happening for our son could have some serious risks down the line. So, I just have to put a little faith in the unknown factors of Enbrel that they outweigh the known risks of my son's continuous pain and fevers. His teachers at preschool have really noticed a difference in the way he will now participate in an activity rather than watch from the sidelines. He will now jump, dance, climb and do physical things a whole lot more at school than he would even than in September. People know that there is something different happening for him and they seem to think it is a good thing. I think I will just go with that for now and wait to see what happens in the future. That's all we can do for now. Wait and see. Sometimes I am o.k. with that and at others times I am not. Wow, I've really rambled so I will stop for now. I just wanted you to know that I havn't stop thinking about getting back to you. I really am so glad I was able to connect with someone else out there that is travelling a very similar winding road as our family. Take care and talk to you soon,
Karen

ko

Hi Karen and Thia!
I hope you and your families are doing well, and the TRAPS symptoms/episodes have been under control for your guys!
My little guy is doing well -- he had a slight episode a few days ago, but only needed one dose of Ibuprofen and then it seemed to resolve after that. I certainly can't complain! We go back to the NIH for a follow-up appointment in January, and are looking forward to hearing what they have to say.
Anyway, just wanted to say hello and wish you a Happy Thanksgiving. I hope I didn't share so much in my last entry that I scared you away!
Take care,
Kathy

ko

Hi Thia,
I hope all is well with you and you are feeling better! I just wanted you to know that I posted a comment to you and Karen this evening, and it is comment #66.
Take care & talk to you soon,
Kathy

ko

Hi Karen and Thia,
I hope all is well with each of you and your families! I'm sorry it has taken me so long to get back to you -- I have been meaning to, but have been so busy! Where does the time go?
Thank you both for your thoughtful responses to my last entry. My son's appointment at the rheumatologist a couple of weeks ago went well, and she was very pleased that the Enbrel appears to be controlling the TRAPS symptoms and inflammation. She feels that the hives were definitely a result of a cold virus, since he has had more doses of the Enbrel without any further problems. Also, my son has been on a drug called colchicine since he was diagnosed with TRAPS a few years ago, and the rheumatologist felt that he no longer needed to take it since his inflammation is under such good control with the Enbrel. Colchicine is known to help prevent a serious complication of inflammation called amyloidosis when given to patients with FMF. Although it is not known whether it really benefits TRAPS patients, we felt that since it was so well tolerated by our son and it could possibly help to prevent such a serious complication, there was no harm in keeping him on it. Now that he's not having the frequent and intense TRAPS episodes / inflammation because of the Enbrel, his risk of amyloidosis is thought to be much lower than it was and therefore he should be okay to stop the colchicine. Have either of your kids been on colchicine? I know there is some confusion and controversy about using colchicine with TRAPS patients, but the docs at the NIH have also been in agreement with our rheumatologist's recommendations about using it in his case. Anyhow, the good news is that there has been a big improvement since we started the Enbrel, so we are going to continue using it and will only need to see the rheumatologist every six months unless something changes. We are on an every 6-month schedule with the NIH as well, and the timing of these appointments has worked out so that we will end up seeing one or the other every three months--which is great.
At the rheumatologist appointment I also had a chance to discuss my concerns about the Enbrel. Since my son is doing so incredibly well on this drug so far, it is obvious that it is working for him and of course I would not want to go back to the way it was before... But, I still wanted to discuss my concerns just so I could try to make peace with this decision in my own mind. Specifically what concerns me about the Enbrel is that patients on Enbrel have been shown to have three times as many incidences of lymphoma than in the general population. Also, there have been reports of new-onset permanent demyelinating neurological diseases such as multiple sclerosis. I have been a nurse for 16 years and have cared for children with cancer as well as neurological disorders (too much knowledge is definitely not a good thing in this situation!), and I just hate to think that I might be giving my 6 year-old a medication that's going to harm him (maybe even permanenetly or fatally) at some point in his life. We already know that these serious risks are proven to be associated with Ebrel use, and the drug has only been used for a few years. What about the long-term risks? It just scares me.
Anyway, my son's rheumatologist did acknowledge these risks and said that in all of her years in using this drug (she was part of the original clinical trial), she has not seen any children with these side effects. She also pointed out that the patients that were part of the clinical trial were not TRAPS patients, but were JRA patients who have comprimised immune systems and have higher incidences of lymphoma than the general population. When I asked which was more risky: a TRAPS episode / inflammation followed by prednisone or using Enbrel she said in her opinion, the uncontrolled inflammation brought on by a TRAPS episode and then treatment with prednisone would be far more damaging (for sure, not just a risk of damage) than the infrequent but serious risks associated with the Enbrel. She said that there's still so much to learn about TRAPS, but that Enbrel was one of the most specific and effective treatments (just look at our results so far) there is at this time for TRAPS. Yes, it is scary and yes there are risks and maybe there are long-term effects that are not known at this point in time, but that's why we are in a study at the NIH and really only time will tell. There's definitely a risk too of not giving this drug and enduring a lifetime of complications from the TRAPS/inflammation itself. She thought, as do the docs at the NIH, that in three years we could take our son off of the Enbrel for a few months to give his body a break and to also assess where he's at with regard to his TRAPS episodes.
And of course, after we were done discussing all of this scary stuff, she told me to stop worrying so much and to look at how well our son was doing and to hopefully find peace in the fact that we are doing the best we can with what we know at this point in time. So I am! It is true that all of our options have risks, and we have chosen an option that is allowing our son to have a virtually pain and TRAPS-episode free life, and I am so thankful that we've found something that works so well! I know that no amount of worrying will change things, but I really just needed to have that conversation with the doctor so that I could let it go and enjoy what's actually happening right in front of me!
Sorry this was so long and rambling-- I just realized how long I've been at the computer posting this message! I do feel better now though - LOL! Thanks so much for your support and I hope that you and your families are healthy and happy-
Take care & talk to you soon,
Kathy

Kare

Hi Thia,
Thanks for the information it certainly can't hurt to try. No problem about the delay. Hope your feeling better. If your not, get better soon...
Karen

Kare

Hi Thia and Kathy,
Isn't it amazing what small ones can imagine... My oldest son about six months ago said to me before my other son had his diagnosis of TRAPS that he would like to run across Canada like Terry Fox to raise money so the doctors could find a cure for his brother's disease.

Enbrel definitely seems to be giving my son some relief from his leg pain, knee pain etc. He doesn't seem to be having the leg pain and headaches at night like he was before his last attack. I found it interesting when he was having the last attack that he already had a headache that was just barely controlled by the pain meds., he had his Enbrel, and within fifteen minutes or so he was absolutely crawling out of his skin from headache pain. So, I wasn't sure if the Enbrel caused his headache that was already there to be worse, or if it was just part of his cycle business. He currently takes .24 mls of Enbrel twice a week. If he has another attack the doctors at Children's may bump up the Enbrel a bit more. He certainly is much more settled now that he is off the Prednisone-that was a horrible process to get through! I really don't think I will have my son go on Prednisone again if I can help it.

I agree with Thia that having TRAPS is a benefit in that our children do not get regular colds and flus. Our only problem was before the Enbrel that every time my son came into contact with those kinds of bugs he would have an attack. My oldest son does a lot of bringing home the bugs from school and I also bring them home from school. My youngest son fortunately is too little to bring home anything. Thia, you mentioned you have other sons as well. How do your other children react to your son having injections and all the other appointments associated with TRAPS? Also, about the uveitis, my son has been checked by the pediatric eye specialist a few times for that. His eyes swell so often with attacks and they go so red they often check him for uveitis. So far he hasn't gotten that as well. I, too, worry about the side effects of Enbrel but I think that I have to just stop worrying and try to go with the flow so I don't go crazy. My son is no longer falling and collapsing from leg pain, he is happy and less irritable, he is having some positives happening from the drugs so I think I'm just going to go with that for now.

Kathy, I am so glad that the rashes and hives have settled down for your son. I hope your appointment goes well. We go back to the rheumatology department and then the pediatrician at the beginning of November. I am hoping he does not have an attack before that, but if he does that it is not on or around Halloween, so he can enjoy it. Let me know how your appointment goes. Wish you luck!
Talk to you soon,
Karen

Willsmama

Hi Karen,

I was just getting caught up on what's been going on the past few weeks. I wanted to comment on the issue with headaches. My son had been having some pain issues las year so we increased the dose of Enbrel which then appeared to cause headaches. I'm not sure if it was the Enbrel but I would give Tylenol or Motrin to combat it.

Talk to your doctor because maybe you can give two smaller doses each week. Maybe you are already doing that. Right now, my son is getting the full 25mg dose once a week and has not had any problems with headaches. Sometimes, it takes the body a bit of time to get used to the dose and then the side effect may go away. Just a thought. Hang in there...Thia

Willsmama

Hi Karen,
I apologize for not getting back to you sooner. I was under the weather for a bit. Still am but wanted to get you that info about NIH. The website is clnicaltrials.gov. The phone number for the TRAPs trial is (800) 411-1222. One problem is that the inclusi0n criteria states that you must be at least 5 years old. The may be able to make an exception. Call and see what you find out. Let me know if you need anything else. Take care...Thia

Willsmama

Hi Kathy,

I must apologize as I have been out of the loop for a bit. Life took over and I haven't had time to get online much. I am so happy to hear that your son is doing well.

I wanted to clarify the problem my son had with his eyes - anterior uveitis. I don't believe that Enbrel caused this problem. Many kids with JRA (juvenile rheumatoid arthritis) develop uveitis. The etiology of JRA is very similar to TRAPs. He had only been on the Enbrel for a short while when the problem with his eyes started. As a matter of fact, the Eye Institute at NIH had a study which was evaluating the use of Enbrel to treat uveitis. The use of Enbrel may indeed have helped treat the problem rather than cause it.

I'm curious as to which side effects you are concerned about. I reviewed the drug prescribing information (PI) back in 1999 and the main concern I had was the issue with infection at the injecion site. Thankfully, this has never happened (knock on wood!). Keep in mind that side effects listed in the PI are not always a result of use of the drug. Any adverse event has to be reported regardless of whether or not the drug caused the event.

Here's another positive thing to remember! I have been very sick the past few days with a virus that my too younger boys brought home. Will, the one with TRAPs, hasn't gotten sick and has been taking care of me! Because of the TRAPs, he rarely gets sick with the bugs everyone else brings home because his immune system is always in overdrive. At least there's one healthy person around who can take care of me!

I know it's not easy but focus on how much more normal your life is now compared to what it was before. I am so happy for you because I remember back nine years ago when my son first got sick and how it took 3 long years of searching for answers and wondering if things would ever be "normal". My son was 5, your sons' age, when we were riding in the car on the way home from kindergarten and he said, "Mom, you know I was just imagining..." and I laughed to myself and thought "What could a 5 year old 'imagine'?" and he said, "I was imagining a day when I would feel any more pain." Thanks to Enbrel, he's had many of those days. I know the benefits of Enbrel far outweigh the risks. Please remember that and God Bless.

Thia

ko

Hi Thia,
I still so appreciate all of your comments and positive feedback, and hope that everything is going well with you and your family!
My son seems to be doing really well on the Enbrel so far -- he has been able to go to Kindergarten each day, participate in a basketball league, enjoy his music classes and play with his brother and friends -- all without the interference or discomfort of a TRAPS episode. I am so thankful that this seems to be working for him, and I hope it will continue to do so like it has for your son.
We will be seeing my son's rheumatologist this week for a check-up, and we haven't seen her since our trip to the NIH last June when he was started on the Enbrel. Since we've had such good results so far, I have really been focusing on the positive effects of this drug, but I have to be honest in that the serious risks associated with Enbrel use really scare me. I know your son has experienced at least one serious side effect with his eyes which cleared with steroids, but I am wondering how you deal with the thought of the other serious risks associated with Enbrel?
Since my son's rheumatologist was involved in the original clinical trials of Enbrel, I am hoping she will have some insight or at least some concrete answers to some of my concerns. We'll see!
Thanks much and talk to you soon,
Kathy

Kare

Hi Kathy,
I so know about delays. I have to book a trip to the pumpkin patch for my class, my husband will be going to the pumpkin patch with my middle guy's preschool class, I think there will be a field trip for my oldest son's class (he's in grade one), and I want to take my own three as a family to the patch... I think I will have a lot of pumpkins at my house this year. I've been meaning to ask everybody out there if they have any other children in their family besides their child who is afflicted withTRAPS. How do you all find a balance between your child who is repeatedly ill and everyone else? My eldest said one day not that long ago that he would like to run across Canada like Terry Fox did so the doctors could find a cure for his brother's disorder. It just about broke my heart. I find it so difficult when my son is having an attack and I havn't slept much to be "there" for everybody else who needs me. My friend suggested one day a month I should book a "date" day for my oldest. I havn't done that yet.

The current attack has officially blown over... My son's eyes are still a bit swollen, he looks a little skinnier and a bit pale but the worst has passed. We managed to stay home which is a good thing. We have managed to also officially get him off the prednisone. An interesting thing happened with the Enbrel with his last dose, I think I mentioned it in my last e-mail... He was still on the last few days of his attack, he still had a nagging headache but it was managed by the Tylenol. I gave his dose of Enbrel and then within the hour he was practically crawling out of his skin because of his headache. We had to resort back to the codeine for pain relief. I found it to be a bit coincidental that his headache pain peaked so quickly after the meds. I think it was Thia who mentioned that her son had trouble with the Enbrel and headaches. Have you found this to be the case with your son? I am so glad to have my son off of the Prednisone. I can't tell you how many times I said to the doctors I don't think this drug is doing anything other than giving him some symptom relief. It did nothing to stop the attacks that's for sure. The docs at Children's are waiting to see what will happen for my son now that he is off the Prednisone- what or when another attack will be. If another attack happens, then they will do something different with either dosing or try a different med.

I so hope for both your son's sake and your's that he has not developed an allergy to the med! I definitely think that the Enbrel has been one of the better drugs when dealing with this disorder, so far, and it sounds like that is the case for your son too. Did you talk to anybody at NIH about the hives yet. The pediatrician was sure it was hives??? I'm grasping at straws for you... With the second rash there wasn't any swelling was there? The pediatrician didn't think that maybe it could be a TRAPS rash did he/she? My son does not get a rash with his attacks but I know that a rash seems to be a component for many who have TRAPS. When does your son get his next dose? I hope it goes well.
Talk to you soon,
Karen

ko

Hi Karen,

Thanks for your response and so sorry for the delay in getting back to you! It's been a busy week with field trips to the pumpkin patch and school plays and all the other "usual" things.
I hope your son is feeling better and is completely over his attack by now. Are you sticking with the Enbrel for a while or are you trying something new? How's the weaning off the prednisone going?
As I was reading all of the comments that have been posted this week through this website, I remembered that before my son was ever started on prednisone, our rheumatologist warned that although prednisone can be extremely effective in providing symptomatic relief of a TRAPS episode, usually what occurs is the attacks become more and more frequent. Looking back, I can see now that's exactly what happened. When we first started the prednisone, we would give it for three days at a time for attacks that usually occurred every 4 to 5 weeks. By the time we went to the NIH for our appointment last June, we had needed to give a three day course of prednisone 16 times over a 10 month period -- and 4 of those episodes were basically back-to-back with maybe one or two days in between. I am wondering if by giving a daily dose of prednisone to your son, the same thing has happened and that's why it's been so hard to get him off of it completely? I wonder what would happen since he's now on the Enbrel, if you stopped the prednisone (whether an attack happrened or not) just to see if things would calm down once the prednisone was completely out of his system. I think that's what happened with our son -- it's hard to tell what is what with regard to TRAPS, but I think that the frequency of his episodes definitely slowed down once we stopped using the prednisone at all.
With the two episodes that (I think) our son has had since starting the Enbrel, we have not needed to use the prednisone (so far) since they haven't been nearly as severe. Our son has been on the Enbrel for a little over three months now, and when he was started on it at the NIH, they went ahead and dosed him with a larger once a week dose, instead of the two smaller twice weekly doses. If you continue to use the Enbrel, I'm wondering if you could do the same with your son?
We did postpone last Friday's dose of Enbrel until this past Wednesday due to those awful hives and very swollen hands. The thinking still is that the hives were due to the cold virus, but as with any drug, an allergic reaction can occur at any point during use. He had no hives at all on Monday, Tuesday or Wednesday, so we went ahead and gave the Enbrel on Wendesday evening. Wouldn't you know that I did notice a rash with one hive on my sons arm yesterday (Thursday) when he got home from school, but in an hour it had resolved completely all by itself! But since his cold is long-gone and his hives had resolved many days ago, it makes me wonder just what is going on in that little body of his. I'm keeping my fingers crossed, as I'm not sure exactly what we would do next if he were to become allergic to Enbrel. I guess time will tell, and no, it never seems to end!
I hope things are going well & talk to you soon-
Take care,
Kathy

Kare

Hi Johanna,
We experienced what happened with your daughter with the Prednisone. We would try to stall the episode, but the enevitable end result was the attack seemed to need to happen. The bizarre part was that it would appear that his body was having the attack but the fever wasn't there while on the high doses of the Prednisone. He would do things like fall asleep sitting up, fall over, stumble, complain of headaches, joint pains, and his eyes were puffy. How on earth did you get a quick diagnosis? Ours from official start of me starting to say there is a problem to official diagnosis was nine months. I guess in the grand scheme of things that is fairly quick.
As for the side effects of both Prednisone and Enbrel I have, as I've mentioned, been concerned about both. The Prednisone has definitely had some major side effects. His moods fluctuate, he has not grown since November, except for .5 cm. I found out just recently that Prednisone is a growth inhibitor. The Rheumatology nurse assures me that once he comes off the drug he will very quickly catch up in the growing department. My little guy is just finishing yet another attack and I gave him his injection of Enbrel last night and his headache that he already had just about drove him crazy.
This disorder is a very baffling one. When doctors see your child and they are in between episodes they would never guess that the child is as sick as often as he or she is. I had one doctor say to me when he saw my son from the beginning of an attack to the end, that seeing a child struggle with pain like he was, is what drives practitioners to do what they do... find a probable answer and a way to treat that answer. When, as a parent, you have to describe what the disorder looks like and people can't comprehend what you are saying it is a little unsettlling. The worst part is when those same people see your child during an attack and they say what are "they" (meaning the doctors) doing for your child and why don't "they" have an answer for what to do or what it is. It leaves the parent feeling like we have, yet again, left the proverbial stone unturned when we are constantly banging at the doctor's doors. It is a journey I would not wish upon any parent. But now that we have found this site, it would appear, that we don't have to travel it alone.
With thoughts of you all,
Karen

Johanna

Hi -

I cant believe I stumbled across this website this afternoon after being awake most of the night with my feverish daughter. Finally, after just reading this discussion, I dont feel so alone in this journey with TRAPS.

My daughter, who is 5, is diagnosed with TRAPS and we are enrolled in the reasearch program at NIH. I didnt know about this site until today! I would like to share my story and join this wonderful support group.

She was diagnosed at age 3-1/2. Prior to her diagnosis she would have fever attacks lasting exactly 14 days with vomitting, stomach pain and eye inflamation. Her attacks were 4-6 Months apart and we treated her with Motrin and waited....... We were fortunate to get a diagnosis quickly and she has been going to NIH for a year. After going to NIH last year, we immediately started treatment with Prednisone at the start of an attack. At first it was the answer, the attack stopped within hours and we went on... Unfortunately, over the past year her attacks now come more frequently, 4-6 Weeks and the Prednisone does not always work. Initially it stops the attack, but sometimes after the 4 day course of meds, 3 or 4 days later it returns and we have been redosing the Prednisone.

We head back to NIH on Oct 17th and I am certain they are going to push us in the direction of Enbrel. Having studied both Enbrel and Prednisone, they both frighten me. I am so scared for what I may be doing to her little body by giving her either of these meds. The baffling part is the time in between attacks when she is so well that you can almost or atleast try to forget it even exsists. I was so relieved to finally hear the stories of other mothers struggling with this condition. My heart is with you all as we continue to struggle with this journey..... I would appreciate any advise, as we head down to NIH in two weeks.

Thanks - Johanna

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