Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications My 15 year old just diagnosed yesterday

I have been reading all the info and post during the last few months off and on while I was waiting for my son to recieve an official diagnosis. I have learned so much reading other people who have had it and what dif. treatments are out there. I have even spoke to Prof. Ebringer( he called me everytime I emailed him with a question). What a great guy!
Even after so much research it is very difficult to understand AS because it effects everyone so differently.
My son was diagnosed with AS but the doctor has said its in the form of chronic bursitis in both of his hips. He had an MRI with dye and she said there is a lot of bursitis in the hip area. I questioned to whether he is pre AS? And she said "no he is clinically active and I would get him on enbrel". This scares me to death with a 15 year old child.

Does anyone else out there have a child as young as 15 on enbrel who can help me in this decision? I know Prof. Embringer has said he thinks its to young to put him on biological and remove the starch. I have tried this and it is almost impossible with teenagers. He has given up bread and any cakes or candy, but struggles with rice and corn and potatoes (chips and french fries). He definately has reduced his starch intake by at least 50% but its tough at 15.
Does anyone else suffer from Chronic hip bursitis? Is this enough to move to biological? on Xray there is nothing going on with his back.
My son is a freshman now and has been playing hockey for 10 years now. Its been a plan for him since he's 5 to play college hockey. He has had to sit out for the last six months with hip pain.
Can anyone tell me if the any of the medicine have the ability to make you pain free? Or is it less pain in order to just function?
I feel like I want to do anything to help him get back on the ice at least for 3 more years through HS and let him enjoy his HS years. Then at 18 he can make his own desicion on what to do with meds.
Sorry for the long post, just hoping to find someone in similar situation.
Thanks!

Hi Kathy

My son was diagnosed at 9 with AS.

He was 10 or 11 when he went on Enbrel. It was the best thing in the world for him.

He went from not being to walk with out aid to back to playing basketball within 2 weeks. He felt better the very next day after taking it.

I am going to send you a PM with my phone number. As a mom of a child with AS, I know exactly how you feel. You can call me any time. I have my phone with me 24/7. If I am at work, and cant answer it, then leave me a voice mail. I will get back to you soon.

Hold on girl. You will get through this. So will your son. I promise.

You might want to have your post moved to the main page. It will get a lot more attention there.

Hugs
Lori

Thanks Lori, Actually my name is Laurie also. I use kathy as password or as a answer to security question sometimes because its my mothers name. I need to change that.
Thanks for giving me your sons experience. I know you said he plays basketball, living in NH, he must be a Celtics fan right? I am originally from Boston. I live in NJ the last 5 years, but we are big Sox, Pats, Celtics and of course Boston Bruins fans no matter how awful they are.
I'm glad to hear your son did well. Its so confusing. I thought maybe he does not have As because its suppose feel better once your active but with him its painful all the time, more so when playing sports or even trying to walk. I just question whether the Embrel works on chronic bursitis?
I will look for PM...
Thanks for the kind words.

My younger brother (10 years younger) was just diagnosed with AS, although he had been showing signs of it for over a year. I also have AS, was diagnosed 2 years ago, at the age of 25. When he was diagnosed he could hardly walk because of the pain and stiffness, and all he wants to do is play soccer Next year will be his senior year in high school and that is his biggest concern. My mother is amazing in taking care of him but of course I do everything I can as well, I gave him his first enbrel shot a week ago and already he seems to be doing at least 80% better as far as stiffness and pain. I figure, why not just live in the moment, he wants to play soccer, and my mother and I dont want to worry him with all of the possible side effects. If there is a drug that can help him now, and the doctor is advising he take it, why not give it a shot. We cant take today for granted, we could all get hit by a bus tomorrow you know. I try not to read labels and side effects, as I obsessed about that for about 2 years and it consumed my whole life, but I took enbrel for 2.5 years and now have been on remicade for about a year, and I'm doing really well, and since I've taken on a new attitude towards these meds, my outlook and mood have changed. I'm not a mother, but an older and very concerned sister, so I think I may kind of know what you are going through, if nothing else its exactly what I see my mother going through, watching 2 of her children try to deal with such a terrible diagnosis. Just try to stay positive, the medicine they have available today compared to 10 years ago makes it possible to lead a normal and fufilling life, even when having to face these diseases, be hopeful.
Please PM me if you want to speak, to me or my mother, I'm sure she would be more than happy to help if she can in any way, like myself

Sassy is right. You and your son will get through this.

My 15 year old is currently on Remicade. A little over a year ago she could barely function. Getting up for school was difficult. Making it through an entire school day was close to impossible. Making it through gymnastics practice after even a partial day of school was out of the question. She was choosing to stay home instead of hanging out with her friends because she was too tired and in too much pain. Today she is back to feeling and behaving like herself. She breezed through school and has a challenging class schedule planned for next year. When I ask if she thinks it might be too much, she looks at me like I am crazy. She goes out with her friends and does normal teen-age things. She has not returned to gymnastics, but she swims, rides her bike and has taken up yoga. She is happy and best of all NORMAL!!

I also have AS and I am also on Remicade. You would think that would have made the treatment decision an easy one. It didn't. I thought of all the negatives and agonized about the choices. We tried exercise, physical therapy, hypnosis, accu-pressure, prednisone and all kinds of NSAIDS. As a family, we even returned to a no starch lifestyle. (Several years ago, I followed a NSD for over a year without seeing any change in AS symptoms or pain ... It DID help my IBS symptoms though. I still eat low starch for that reason.) Ultimately, I took a step back and watched her - really watched her. Like you, I made the decision that I would do anything to help her feel better. Remicade was that choice for us.

Watching her today, I am happy that we made that choice. That doesn't mean that I don't still worry or wonder if we are making the right decision. I do believe that for now, we have made the best decision that we could. By choosing one of the biologic medicines, we are giving her the best chance to grow up happy and healthy, as free of AS damage as possible, and in a much better frame of mind to accept and learn to manage this disease long-term.

Whatever you choose, I hope your son starts to feel better soon.

Eric is on Remicade now because he also developed crohns.

I remember pre-enbrel...I had to carry him to the bathroom in the mornings and put him in a warm tub to get going. If he had to go to the bathroom in the middle of the night, he would yell to me and I had to carry him to the bathroom.

Back then, I had to fight tooth and nail for the insurance to pickup the Enbrel.

Eric and I sat and discussed the what ifs and maybes before he had his first injection.

Eric decided that he would rather live his life and be a "normal" kid. He wanted to live for today. If some time down the road, something came up because of the biologics, then we would deal with it then. Until that time comes...if it comes. Eric lives his life just like every other kid out there.

We have never regretted him being on teh biologics. So far...so good.

Thank you so much! This makes my choices a lot easier knowing others have had so much success. You are so right if you look at the all the side effects you will go crazy.
it seems the internet can be a great tool, but there are a lot of horror stories out there too.
Thanks everyone.
great weekend to all!

Hey Laurie;
I was a kid with AS, it hit me at 10, though I didn't get a dx or any type of real treatment till age 21, and I have no experience with kids and biologics but I wanted to let you know my experience with LDN, as it's a super-easy med that has helped me HUGELY and you should know about it. It's a tiny dose (I'm on 4.5mg) of Naltrexone, which is FDA approved for getting people off heroin (in much bigger doses) but when taken in little doses at bedtime, hepls autoimmuners a bunch. I'm not pain-free (I've had moments!! It's AWESOME!!) but my pain is cut down from 5-9 daily to 1-4 daily, and my recovery time after overdoing it is immensely fast now (hours as opposed to days or weeks). I don't limp anymore! I've actually gone for a walk TWICE this week, for FUN! (I wasn't chasing my cat, or anything like that! I walked because I WANTED to! lol)

It can be very difficult to get LDN prescribed, since it's very off-label and there isn't much in the way of clinical trials, but it's been SOOO wonderful for me, I wouldn't go back for anything. It's got almost no side-effects, which is so amazingly awesome I can't tell you, and the only lifestyle change I've had to do is to set an alarm to take it every night, and not take opiates or drink booze AFTER my nightly capsule. (before the dose, I can drink or take opiates if I want to) Not everyone on LDN has issues with alcohol after their dose, either. It may just be me.

www.lowdosenaltrexone.org is my favorite website on it, feel free to PM me if you have any questions. Mollyc1, drizzit and jaybird are or have been on it also, you can ask them about it as well. Megan tried it but couldn't keep it down, poor thing.

*hugs*
Bridget

I am pretty new to AS and am 35 so I don't know if I can be of a lot of help. I did want to post b/c you mention that your son plays Ice Hockey as I did and I played through college as well. I did not have AS unitl a few years after college so I am not sure I can give you any tips on helping a 15 year old. I think if the Enbrel is allowed for your son and is safe for him than it may be an option. I have so many fond memories from all of these years playing hockey that I would not trade them for anything. That said if the Enbrel gave him the ability to play for a few more years and is approved by a doctor with full knowledge of the risks than it might be worth it. Whatever you decide good luck and hopefully he will be able to get back on the ice

Chris

Chris,
Thanks for the advise. Always nice to hear from another hockey player! My son loves the sport and has been playing now for 10 years. I just read so many negative things about physical sports with As.
I'm just so afraid of getting him to start the meds by telling him it will help him and get him back to hockey and then if doesn't work he will be crushed.
Where did you play College? Growing up in Boston my son has always wanted to be Black Bear at Maine, even if he were healthy that would be stretch for him but other schools may have been an option.