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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

My son recently turned 6 and was diagnosed with TRAPS almost 3 years ago. He was started on sub-Q Entanercept at the end of June. It sounds as though his symptoms are very similar to your son's symptoms -- terrible migraine, high fever, leg/joint pain, stomach issues and eye inflammation. It is so difficult to see a child suffer-- especially when nobody can figure out what is causing the symptoms -- and after many, many episodes, doctor visits and numerous tests, at least we eventually had a diagnosis to work with.
Our son is followed by a pediatric Rheumatologist at the University of California San Francisco (UCSF)Children's Medical Center, and I believe she also sees one or two other children with TRAPS. He initially was started on a drug called Colchicine which is thought to reduce the risk of developing amyloidosis from the inflammation caused by TRAPS. He is also was started on Ibuprofen 3 times/day every day with an additional daily dose added during an episode. We soon figured out that the Ibuprofen was not helping to manage his symptoms, especially during an episode, and our Rheumatologist recommended trying prednisone during his episodes. At that point, we dropped the daily doses of Ibuprofen, but he still takes Colchicine twice a day. We are not sure how or if the Colchicine is helping to manage his symptoms, but he's tolerating it well with no side effects, so we are leaving that alone for now.
Once we started him on the prednisone (2mg/kg/day for 3 days) at the onset of an episode, it was truly unbelievable. Within two hours of taking his first dose of prednisone, he would literally go from being almost incapacitated and in intense pain with a high fever to going outside and playing basketball without any fever or pain. We found that in order to continue that degree of symptom relief for him, we needed to divide the dose in two and give it every 12 hours for 3 days instead of one big dose once a day for the three days. He was in preschool when we figured all of this out, and went from missing many days the first year to missing none the next. Amazing!We thought this was just too good to be true, and it was...
Even though our son was basically getting complete relief of his symptoms with the prednisone, his body was still affected by the intense inflammation from the TRAPS episodes, and prednisone itself has a long list of risks too. His Rheumatologist at UCSF referred us to the NIH for a consultation and participation in the Periodic Fever Syndrome study. Have you been to or contacted the NIH?
We went to our first appt. at the NIH in June, and all of the doctors that we met there felt very strongly that we were needing to use the prednisone too frequently (16 times in a 10-month period), and recommended that we start our son on Entanercept. They felt that even though the Entanercept has some very risky side effects, using it to hopefully prevent the TRAPS episodes would be less risky for our son than to continue to have him endure the cycle of inflammation followed by the prednisone.
Since our son was started on the Entanercept at the end of June, he has not had one TRAPS episode. He has just started Kindergarten, and is doing so well that I have decided not to bring up TRAPS with the teacher/school unless I have to -- as it really is confusing to most people and difficult to explain. Having said that, and knowing how well the Entanercept appears to be working, I am still very uneasy about giving it to him. We have not noticed any subtle side effects so far, but we are very aware of the very serious side effects that have already been associated with this drug is some patients. I still find myself going back and forth whether this really is the best way to treat thise disease -- as there are many, many years of data with the side effects/risks of prednisone, but only a few years with Entanercept. It is an uneasy feeling, which is difficult to justify sometimes -- but then I think about the professional recommendations, and also the fact that the TRAPS inflammation and frequent prednisone use cause damage too -- maybe even more than is known at this point in time. The Entanercept has worked well so far to prevent the inflammation and symptoms from occuring in the first place, which really is what we were hoping for. The docs at the NIH said that based on what they know so far, sometimes the episodes become less severe and frequent as the child grows up, but sometimes not. They felt that in 3 years, it would be reasonable to stop the Entanercept and see what happens. I'm not too sure I can be on board with that drug for so long though, and still do lots of research on my own.
Hopefully in the years to come, TRAPS will be better understood and the treatment options will become clearer and less risky regardless of the type of mutation it is. I am looking for the same answers as you, but have come to realize that there is still a lot that is unknown about TRAPS at this point. I hope you will be able to find something soon that will effectively treat your son's symtoms, and at least you now have a diagnosis to work with. Hopefully there won't be any need fo further testing or hospitalizations to figure out what's going on.
Take care and please keep me posted,
Kathy

Willsmama

Hello!
First I want to tell you that everyone is different and that no two people will have the same experience with a medication or a medical condition. I have a lot of positive feedback for you but don't want you to be disappointed if you have a different outcome. Having said that, I'd like to share with you some information about my son who has been going to NIH for about 7 years.
He is now 12 years old and is an honor roll student who is very involved with school activities.

He was 3 when he started having the same symptoms you described. After 3 years of tests, many invasive, we landed at NIH. At the age of 5, we entered a clinical trial using Entanercept. He has been taking it ever since. During the trial, he developed anterior uveitis which is a serious eye condition. Steroid treatment took care of it and his eyes have been fine.

He has occaisionally had symptoms but nothing like before the diagnosis and treatment. Headaches were common at one point but we had increased his dose and I wasn't sure if it was the illness, side effects or something else. In the begininng, he got two injections a week. Now he gets one and seems to be doing well. Make sure you change the dose as the child gets bigger as underdosing would probably cause symptoms to return. My personal opinion is that Enbrel would be better that prednisone.

His spleen is enlarged so he can't play contact sports. Other than that, he sings in a professional choir and travel out of the country, plays soccer, is on the swim and dive team, a hip-hop dance team and much more. I say all of this to say that he could not be doing better. I don't know what the future holds for him but so far we hav been blessed with a positive outcome. If you have specific quesstions, please ask and keep in touch. I hope this helps...Willsmama

ko

Thanks so much for your input! it is really great to hear from someone who has had years of experience with TRAPS and Etanercept -- and it is especially great to know your son is doing so well!
I know every case is different, but I keep feeling like in the back of my mind I'm waiting for something bad to happen instead of enjoying the fact that my son is responding well to the Etanercept. I am learning through this process to let go of the worrying and have peace in the fact that we are doing the best we can with what we know at this time, and also to keep focused on how well things have been going since we started the Etanercept. Your comments and positive attitude are reinforcing that lesson for me!
Thanks again,
Kathy

Willsmama

Kathy,
I completely understand how you feel. I was in your place 7 years ago. The year was 1999 and they had just announced the discovery of the mutation. Enbrel was a new drug but I was encouraged because it had a pediatric indication. I have a medical background so if I say something you don't understand, please ask for clarification.

Most of the time, I had to give my son Motrin three times a day just so he could walk. He would crawl to the kitchen table every morning to eat before he could take the Motrin. This went on for more than two years. At the time we started with NIH, my son was one of the youngest that had been diagnosed. I know it's scary but think of it like this...you know what it is and it can be treated. There have been some concerns if he gets sick because if he has an infection, I need to stop the Enbrel for a bit. It's often difficult to tell if he's having an attack, which Enbrel would help, or sick with something else and shouldn't have the Enbrel. Motrin still helps when he has pain so I just give it as needed. If you have any questions, let me know. I'm so glad that I am able to help. Thia

Kare

Hello Thia and Kathy,
Thank you both for your comments. I can't begin to tell you the thoughts that have been rolling around in my mind upon hearing that both your children have struggled with this bizarre condition. Thia, my son crawled to the table too!!! I actually felt queasy when I read that because every doctor I would tell that to would look at me like I was putting them on. We have not been able to treat our son with Motrin/Ibuprofin because it causes him too much tummy pain. We just couldn't give him more pain with the pain he already had. We use Tylenol in between attacks. We are currently trying to get him off the Prednisone. It has been a bit of a rough road trying to do so. He has been very irritable. I wonder if I'm doing the right thing trying to get him off it. I have read that many patients with Traps stay on both drugs. I did not want him on two immune suppressors. His big brother is in grade one and he is in preschool. Too many germs, too many drugs. We have now gone almost six weeks since the last attack and, I, like Kathy have been holding my breath waiting for the next one. It's hard to believe that after all we've tried, Entanercept may have some benefit. We did exactly the same drug route as Kathy's son, Tylenol, Tylenol and Ibuprofin, Colchicine, Prednisone, and then finally Entanercept. Thia, has your son had any attacks since starting Entanercept? What have you told his school about Traps, or have you? Talk to you soon, sorry it took me so long to getting back to responding, but I'm a teacher-had to get through September...
Karen

Willsmama

Hi Karen,
I wanted to get back to you on some of the medication management. I guess I'll give the old "check with your doctor" disclaimer first. Motrin (ibuprofen) and any other NSAID (non-steroidal anti-inflammatory drug) should not be taken on an empty stomach. This might be why he's had tummy problems. I used to give Tylenol first and then Motrin after a meal. There are two different doses for Motrin. One is the OTC (over-the-counter) and the other is Rx (prescription dose). The Rx dose is much more effective and worked well for us when there was an attack. Fortunately, we never had to use Prednisone or Colchicine. I don't know much about Colchicine. I'll have to look it up. I must say that I have concerns about chronic prednisone use. I've worked in healthcare for twenty years. I believe that prednisone has far too many side effects and should not be used long term if it can be avoided. You have to taper down the dose and can't just stop it because it'll cause a lot of problems. I think it also affects mood and may even cause some psychiatric problems. This may explain some of the irritability your son is having.

My son has had some pain over the last couple of years but I'm not sure if it was an attack or something else. He was getting injections twice a week and was doing so much better that we would sometimes forget to give him a shot. If he missed more than a week, he would experience pain. Now that he is twelve, we give him the entire dose once a week and compliance is much easier. Over 7 years, I would say he's had about 3 or 4 attacks because he didn't get his meds regularly. I informed his school about his illness because we were on the heels of the Enbrel clinical trial when he started elementary school and I wasn't sure if he would have an attack while in school. I didn't want them to panic and send him home every time he had a fever or pain. I explained how TNF worked and how his immune system was overactive. I told them that he may come in complaining of pain and that he should get Motrin as long as he had recently had a meal.

He is now in 7th grade, sings in the Phila Boys Choir, has travel to Alaska, Costa Rica, Panama and will be going to Greece with the Choir next year. He's about to take the SATs as part of a program out of Johns Hopkins, sings in the acapella choir at school, is on the student council, in the orchestra and hand bell choir at school, dances in a hip-hop dance company and plays piano and viola. He's also active at our church, volunteers as a camp counselor and helps out in the children's ministry. We can't get him to slow down! He'll ride his bike to church if we can't take him! I say all of this to say that he's as normal as any kid can be. Please remember this every time you think about the bad times because I couldn't be happier with his quality of life. Take care...Thia

Kare

Hi Thia,
Thanks for all the info. All our medication moves have been in close consultation with numerous docs, pain team, rheumatology, an infectious disease doc., two pediatricians (I think I spelled that wrong), and my G.P. has bowed out gracefully. The Ibuprofen route has never been a smooth one. We tried everything to get it right for him. In the end we needed to get an endoscope to rule out tummy damage from the darn drug so it wasn't worth it for our son.

Prednisone has always been a concern. The rheumatologist who started him on it said, "many people fear prednisone, we respect it". This did nothing to make me feel better about putting my three year old on it. I did not enjoy the behavioural changes it caused when he started it. He went from being a relatively calm little boy, to someone who was wired and could not use an "inside voice". The process of weaning him off the drug has been just as unpleasant. No, Prednisone is definitely not our favourite drug of choice in our house. My little guy will actually say as an attack is approaching "the Prednisone, and the Colchicine (when he was still on that drug) aren't working any more."

As for the Enbrel, well, the wait is over. Two hours after my last e-mail he woke up with a terrible headache, leg pain and vomitting. We are now in the process of another attack (although the fever isn't as high as it usually is). We use different drugs during an attack beyond his usual Prednisone, and Enbrel. We use Tylenol, Codeine, and now since the August attack, we are trying Gabapentin in an attempt to manage his pain. I'm not sure what the Rheumatologists will do now. It's been six weeks and we are in attack mode again. Perhaps they will increase the dosage of the Enbrel (although I don't know if they can), or they will want to increase his Prednisone again-which I don't know if I want to allow. Or perhaps, they may want to switch to Annikinra (spelling?). It's so hard to know what to advocate for.

Thank you so much for offering some words of encouragement. I know that now we know what we are dealing with there may be some answers for treatment we're just not completely there yet. I'm so glad your son is doing well. I know mine will get there some day too... just not today.

Karen

Willsmama

Karen,

I believe you said your son is 3. Is that correct? How much does he weigh and how much Enbrel is he getting each week? Also, how long has he been on it?

Have you talked to the NIH docs about his recent attack. When my son would get sick, I would sometimes call them to get direction on how to handle things. I am sorry to hear that you are still having problems. Thanks for keeping in touch...Thia

Kare

Hi Thia,

My son just turned four on the 13th of September. His weight varies between episodes. He can go in between twenty eight and thirty pounds. He is getting .24ml of Enbrel twice per week. He has been on it for six weeks.

We actually havn't dealt with NIH. We have been followed by the rheumatology docs. at Children's Hospital near our home. Yes, they do know he is having another attack and I've been very lucky with how accessible they all are for my son. I appreciate your comments as always, it's always good to know there is someone out there who knows what this thing called Traps is like to live with.
Talk to you soon,

Karen

ko

Hi Karen,
I'm so sorry to hear that your little guy is having another attack, especially after it seemed as though the Enbrel was helping. Sometimes it takes a long time for drugs like Enbrel to reach their full effectiveness, so perhaps over time you will see a decrease in the number and the frequency of attacks -- I certainly hope so!
When we were at the NIH for our first appointment last June, I specifically asked the docs what I should do if my son were to have an attack despite being on the Enbrel. Since my son was never on a daily dose of prednisone ( we only used it for three days at a time, at the beginning of an attack), the NIH docs said to go ahead and use the prednisone for three days if we were sure he was having an attack and there was nothing else that was providing relief for him. They did make one exception though -- instead of giving a 2 mg per kg daily dose of prednisone for 3 days, they wanted me to give 2 mg/kg on day one, 1 mg/kg on day 2, and .5 mg/kg on day 3 to see if that would work. Prednisone is such a powerful and complicated medication, that if you absolutely have to use it, the goal is to use the lowest effective dose for the shortest time possible.
We haven't had to cross that bridge yet, as I think my son might have had two attacks recently but they were so different from his usual attacks (probably because of the Enbrel) that it was hard for me to know really what was going on. Like Thia has said with her expreience, it was hard to know if my son was having an attack for which the Enbrel would be beneficial, or if he was sick with something else and shouldn't receive the Enbrel. Since my son has just started kindergarten, I'm sure this debate will be a common one for many months to come! My son did develop severe hives and swelling of his hands last week after a mild cold, and even though his pediatrician thought the hives were due to the cold virus, his rheumatologist had me skip his Enbrel dose for the first time last week just in case the hives were Enbrel-related. We'll see what happens after his next dose -- just one more thing to worry about, eh?
Anyway, I think you ar right to want to get your son off of the prednisone, or at least find the lowest effective dose that will work for him. Maybe even giving it to him only during attack would work too? I hope that the Enbrel will continue to offer relief and his attacks will be few and far between. If your son's doctors do want to try him on Anakinra, you should know that it is not recommended that Anakinra and Enbrel be used at the same time, as very serious and sometimes fatal infections have occured in patients taking both of those drugs together. I know this because of a conversation I had with the NIH docs about that very subject, and a black-box warning was also issued by the government about it.
It sounds like you have good raport with your son's doctors and it seems like they are exploring all of the treatment options available to your son. That is so important -- especially with something like this! Have you ever considered having your son evaluated at the NIH? It might not change a thing, but sometimes the piece of mind that comes from meeting other docs who have experience with TRAPS would be worth the trip. Also, if you do decide to have a consultation at the NIH and your son was enrolled in the periodic fever syndrome study, usually any medication that your son would be on through the study would be provided by the NIH.
Just a thought-
Please hang in there and keep me posted on how things are going! I feel so fortunate to have connected with you and Thia about this whole TRAPS thing!
Talk to you soon,
Kathy

Kare

Hi Kathy,
It was very disheartening to have my little guy have another attack. This one was not one of his worst ones but it was one of the regular ones. I'm a little sleep deprieved at the moment so forgive me if I am not as clear as I should be. We are still mucking our way through this one but it looks like we will be able to stay at home for this one. There has been one difference, though, his fever didn't hit the 105-106 range this time, instead it sat at about 102. 102 degrees is much more manageable for him. The thought has crossed my mind that the Enbrel just hasn't reached its peak effectiveness. I sure hope that this is the case.
Currently, we are still trying to get my son off the Prednisone. He is now on a 1/4 of a 5mg. tablet. We tried the higher doses of the Prednisone in February to try and stop an attack and all that happened was it stalled the process. As soon as he stopped taking the Prednisone the attack came full force.
As for knowing if my little guy is sick with something else like a cold-he never seems to get a cold or flu. That being said, in March he did test positive for Influenza A when we went into Children's for that admission. What seems to happen though is that he starts to get a cold or a bug and his body swings into overdrive attack mode and the only thing that presents is the attack.
I didn't know that hives could be a concern. How many weeks has it been since your son has been on Enbrel, now? It never ends does it? Did his hands hurt with the swelling? The pediatrician didn't think it was hand, foot and mouth disease at all? That's a really common one that occurs during the Kindergarten years.
I think what our rheumatology docs said was that we would either do one or the other-Enbrel, or Anikinra. The docs did say that Enbrel works for some and not at all with Anikinra and vice versa. So who knows what the next move will be. I'm at the point (at least today with the lack of sleep) that I don't think I even want to know.
That being said, I am very lucky with the docs we have. All of the amazing many have been awesome supports over the last ten months or so. I have pager numbers, contact numbers, someone always calls to see where my son is at. I couldn't ask for better. The rheumatology team has presented our son's case repeatedly in different places looking for answers for us and they have great communication. I have thought about NIH recently as someone from there just e-mailled us last week. The problem is the trek to get there and who would fund it. I didn't know they provided meds, though. Maybe the money we saved doing that would even out the flight/travel costs. I think if we come to the end of the road with our rheumatology team that would be something we would have to do.
I am so glad to be able to connect with others that have similiar experiences as our family. Thanks so much for connecting with me and sending all your kind thoughts and concerns.
Talk to you soon,
Karen

Willsmama

Hi guys,

I don't have much time this AM but wanted to reach out. Kathy, I agree with your comments. It may take time to get the Enbrel going at full blast. Last year, we started to have more attacks so we increased the Enbrel dose from .6 mL to .8mL and that did the trick. I checked your sons dose and he's getting the correct dose for JRA. Maybe you could ask your docs about increasing the Enbrel a little. This may help avoid the prednisone. Just a thought.

Karen, have you checked out the NIH web site? (NIH.gov) If there is a clinical trial going and your son meets the inclusion criteria, you can enroll and they will cover travel costs. You can stay at the Children's Inn and they will give you a daily meal allowance. The initial evaluation may take a few days. If you want, I can try to get a contact phone number. I definitely think it would be worthwhile. We saw Dr Kastner (the lead doc studying TRAPS) when we were there last month. We only go to NIH once a year now. In between visits, we go to Dupont Children's' Hospital in Delaware. This way he is seen every 6 months. The labwork helps determine whether there's an attack or something else going on. Let me know what you think...Thia

Jennifer3

Hi Karen,

If you want to go to the NIH and have travel issues, you should look into Angel Flight. They flew our family to our NIH visit this August. It is a program where pilots volunteer their planes and services to get people to long distance medical care. The planes were very small (4-6 seaters), but the flights were excellent. There is an Angel Flight coordinator at the NIH named Marita Eddy and she was very helpful. Her email address is meddy@mail.nih.gov. Try searching google--angel flight has a web site. If Angel Flight can't help you, she may know of another resource that can. Or try to find a social worker at the NIH who will know more about resources available.

Good luck!
Jennifer

Kare

Hi Thia,
Thanks again for all the information, yet again. I do have a phone call in to the docs to ask about dosage and whether we are changing my son's meds.

I havn't checked the NIH site as of yet. If you could get me that contact number that would be great. Talk to soon,
Karen

Kare

Hi Jennifer,
Thanks to you as well. So many people could benefit from knowing about Angel Flight. All the extra resources are always good to have. I will be able to think about things in a much different light.
Much Appreciated,
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

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

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 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 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

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