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Traps

birdnbee
  • By birdnbee
  • Posted April 14, 2006 at 1:05 pm · 13 replies
  • In TRAPS
  • Shared with the public
0 Recommendations

I have never talked to any other person about TRAPS. I really would appreciated view from someone else. TRAPS trouble can be really overwhelming.
Barbara

Explore topics in this discussion:

Motrin PFAPA Arthritis Allegra Fever Colchicine Trental Feldene TRAPS Pain Prednisone

13 replies

ltodaro

Hi Barbara! The whole fever disorder is overwhelming!! Tell me about your child. Sometimes people hear that our children get fevers and they don't fully understand what all it involves. Also, how all encompassing it is in our lives. I'd love to talk to you about TRAPS and how thses crazy fever disorders affect all of us. Have a good evening and I look forward to hearing from you. Lori

birdnbee

Hi Lori,
When Jace was born 6 years ago it was very overwhelming to not understand what was happening. The local Dr.'s were stumped. We actually went to Montreal Childrens Hospital and met with a RA specialist. They are the ones that figured it out. After we had a name for his condition it has been a bit better.
The fevers are so spontanious. As an infant it seemed more frequent. I am sure that was due to not being able to communicate his discomfort. His fevers now sometimes present as fevers and at other times inflamation in some joints without the crazy high temps. The mood fluctuation is the biggest challenge because Jace can get so ornary sometimes for 2 weeks prior to visual signs that he is not well.
We take childrens liquid Motrin for his condition and it work great. School has been a concern because it is so difficult to explain. When he is not well he does act out. Not bad, but enough to get a call from the teacher. We always hold him accountable. Hoping he knows when he should take Motrin for help.
My husband is taking a daily injection for his TRAPS. Etanercept (SP?) This is his 3rd attempt on meds from NIH and we are so pleased he is doing very well. So for me having 1 person to have a treatment successfully gives me hope for our child.
Please write more,
Barbara

ltodaro

HI again Barbara! Our son Nino, also 7, has another form of a Fever Disorder...Familial Medeterrian Fever, although, the gene has yet to be detected. He presents with all of the symptoms. It is awesome that you feel hope for Jace, and are seeing improvements with your husbands treatment. Many pediatricians and family docs have a hard time diagnosing these disorders, they are not the norm. Yes, the spontaniety of the fevers and the illness is tough. You never know when it's going to happen. Do you have other children? How do the deal with all of this? One piece of advice, find something that helps you be you...not just a caregiver! Find a way to have a few moments to yourself outside of caring for your husband and Jace. Not that you mind, but you also have to have your own identity! The most frustrating thing for me is people identifying me as, "Nino's Mom" and not the Mom of the others or Tony's wife, or just plain Lori!!! Yes, we have a sick son, but it's not our whole life, it's a part of it and we have to live life beyond his illness. Understand?? Well, I feel like I've bebbled. Is your son a part of a study at the NIH? How often are you there for treatment? Perhaps we can meet the next time you are there? We are there every four weeks with Nino! Have a super week, and be in touch when you can! Lori

birdnbee

Hi Lori,
Thank you for the feedback. I really appreciate your time. The fevers are so unpredictable. Our family has been aware of all that has been going on since this all started happening. Our 14 yr. old da. understands it a bit more than our 8 yr. old daughter. But as a whole we all pull together when the fevers present.
We are in a program with NIH. Their last visit to NIH was Oct. '05. Jay was restarted on his current meds and all is going well. He checks in via phone with NIH staff, but no scheduled appt. for a recheck @ this point, but soon I am sure. Jace goes along for the trip, but all they do is draw blood and give him a check up. They do not visit as often as you all do. We reside in upstate NY and the trip is about 12 drive. Way back before 911 The program flew Jay to Maryland for the study. Now we must get their on our own----but it is a great exchange for the meds we are provided because my husband is constantly ill with out them. Jace does just fine with childrens motrin. Prednisone is an option for Jace, but we are not willing to do that yet. We are also in the middle of relocating to FL. Jay has promoted with his company and off we go when school gets out. I think that will put us about 18 hrs. away from Maryland. I hope this will not prevent us from being part of a continued study. I am sure it wont, but the travel will be more difficult. Maybe the travel plan will allow travel reimbursement someday again. Thank you for the advice about taking time for myself. I know the importance of this wonderful suggestion, yet I am daily working on improving that goal.
TTUL --Barbara

ltodaro

Hi Barbara.
Just checking in on you and your family. I do hope all is well. Are you preparing for the move to Florida? That has to be exciting! Be in touch when you can! Lori

birdnbee

Hi Lori,

Been keeping busy working from home a bit, getting the kids through the end of the school year and yes packing. My son Jace is doing well. No fevers recently. He goes for a physical today which must be submitted to his new school. How do I explain his condition this time? Do I not say anything? People don't really get it until they see him at his worst. And those times are usually only when family is around. Any suggestions?
Thanks Lori,
Barbara

karen

Hi, we just returned from our first visit to NIH. We went believing that my son had PFAPA but the doctors from the study think he is more likely to have TRAPS. We will get the results from genetic testing in a few months. My son is 6 and developed what seem to be cyclic fevers in November. He has gotten extended fevers since he was small. I just finished searching the internet on the topic and am feeling pretty upset. His symptoms do seem to go along with TRAPS more than PFAPA and the description of this disorder sounds a lot worse than PFAPA. My son gets the high fevers that last for about a week or 10 days without prednisone. With them he gets bad stomach aches, dark circles under his eyes, headaches and leg pain. We started giving him a 20mg dose of prednisone in April and this seems to have really helped him getting rid of the stomach aches and leg pains between symptoms and wiping out the fevers within a few hours. One of my big questions is whether the symptoms of TRAPS worsen over time, stay the same or just change randomly. Any feedback would be really appreciated.

nikki228

I know how you feel. We've been taking our 8 year old to the NIH for going on 3 years now. You described the symptoms of Gabby. They have flipped back & forth between TRAPS, Behcet's Disease & Muckle Wells. Gabby does get mouth & genital ulcers though along with the other symptoms you described. She did not do well on Prednisone. Currently she is on Kineret, Trental, Singular, Feldene, Allegra & a multitude of inhalers. All of her genetic testings have been negative (although only 2/3 of TRAPS kids test + for the gene). What I've found with all of these disorders Karen is that they are different from kid to kid. What may be "normal" for one child is not at all for the next. What a mystery they are - not only to us but the specialists on the subjects as well! Keep in touch...Tammy

karen

Thanks so much for your reply. So far nobody has mantioned Bechet's or Muckle Wells.... I guess that is something else to read about. NOw that a month has passed since our visit to NIH I am feeling less surrounded by worry. Hopefully we will get some answers in another few weeks. All the best. Karen

Mel

Hi Karen
I came upon this site while researching TRAPS and have joined to pass on some info. I am a 58 year old mum of 2 (and nearly a granma!) with an undiagnosed illness for 50 years - it has now been provisionally diagnosed as TRAPS and I am just waiting to get the blood result.

My father had it before me so it has been around for a very long time, he died of old age, and I am still around and functioning! I live in the UK and it is very rare here so it has been a battle to get help.....

I don't know if you have found the support group fmf_support@yahoogroups.com - I have just joined and found people with either the illness themselves or whose children have it - I can't tell you what a difference it has made finding I am not alone!

Just wanted to pass this on and give you hope with your child......if you have already found the group that is even better -
Best wishes
Mel

Kare

Hello Barbara,
I am curious as to why your husband is the only one Nih has put on Entanercept (I don't know if I spelled that correctly). Has your husband noticed any side effects and how long has he been on the drug? Do you have any other children? I have three children and it is my middle child who has been diagnosed with Traps. My little guy seemed to have had only sporadic attacks when he was little. Then, at two and a half he was able to describe what was happening for him and he fell into a cycle of these horrible attacks every three to six weeks. I am very interested to connect with any one else who has had experience with Traps.
Thanks,
Karen

babybutterfly58

Hello
My name is Ellen and both myself and my 3 year old son have TRAPS. It is very hard to deal with but I think being able to talk to other people about it will help. I will provide a little background here quick because I have not gotten very far in setting up my profile on here. Right before I turned 10 I started to have bad pains in my legs, hips, arms, and back. On the morning of my 10th birthday I woke up with a rash and fever, my mom took me to the doctor, they did some tests and told me I had JRA a form of childhood arthritis. I had to deal with it for 15 years, medicines did not seem to work and I hurt almost every day. I have 3 children and my son Lucas has been sick since he was born, he had leg pain and many other symptoms I took him to the doctor thinking he also had JRA, the doctors sent him to the University of MInnesota and it was discovered that he has TRAPS. Then the doctor wanted to test the rest of my family to find out if anyone else had it, they tested me first, it came back positive, so now 15 years after finding out that I had JRA I have found out it is something different, My son has horrible symptoms that I never had and still don't have. That is about all I can explain here. I will try to get up more on profile soon. I have a facebook group for my son that describes what has been happening over the last few months, it is called "My Little Lucas" check it out for more information I hope to hear from you guys soon, it is so great being able to talk to others dealing with this situation.

mdjb_bryant

My son has Pfapa. Please look into the the drug Colchicine. It sound the same as what my son has been going through for 4 yrs. I just did some research and this drug has been amazing. He has not had an outbreak in almost 2 months and no side effects from the drug. Please feel free to contact me for more info. mdjb_bryant@yahoo.com trying to get the word out.

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