Sons diagnosis | Arthritis Information

HI guys, my 11 year old son had his RD appt yesterday. He was HLAB27 + so the RD did a really lengthy physical and asked my son lots of questions. He has to have a nuclear bone scan today, and my RD says he is 99% sure that Liam has Ankylosing spondylitis. His joints were tender all over the place but by far the worst were the heels, S.I joints and spine and ribs. So RD has prescribed 35mg of pred for 2 days then reduce by 5mg per day until finished. Then he said he would hope to control it with NSAIDs but if not then MTX or some other Dmard will be attempted. I must admit, I am still in shock, I can't believe he has recently been diagnosed with epilepsy and anxiety and now this. Anyone had this or have a child with this, I would love to hear a real life experience with it. Regards Janie.
The poor thing! Being 11 is hard enough... I can't imagine being 11 and having to deal with this kind of crap. Yeah that is quite a burden for a little one. My heart goes out to the both of you. Just love 'em--he will need to know that every day as he deals with his illness. I can't help either but I will send up some prayers that you both have the strength to get through this. Sometimes it seems like a little too much is dished out to the same person and their families. Hang tough!

Janie, I am so sorry to hear that. You and your son will be in my thoughts. Eleven is so young, but at least they are catching it early, and hopefully will find the right treatment to keep it from getting worse. I understand physical therapy can help, especially in the water.

When my RA symptoms started I was worried that's what I had because of the pain in my SI joints. I don't know anyone who's had this diagnosis, but you might want to try a dedicated AS forum, like this one: http://www.kickas.org/ubbthreads/ubbthreads.php?Cat=0

Wow, Janie, I'm sorry to hear it. But you know kids. He'll have challenges that most kids don't face, but I bet he's up for it. At least you know what's going on and can make a plan now. I'll be praying he'll respond to the meds. I'm glad he has you for a mom. Just wanted to pipe in here and say that my thoughts are with you both.
Wish I could have more helpful info to offer..
So sorry to here this about your son. Keep us updated as to his progress. You are in my prayers. Surely i hope a cure is around the corner. Hopefully this is something that will go into remission soon. At least you got him to a doctor and they can start treatment. I have no idea how treating siezures and this at the same time will interact. Is there any conection between the seizures and this disease? I will pray for your boy. Try to take care of yourself also. Get your rest and your walks. I know a mother will neglect herself when a child is ill. Remember you can not take care of him unless you take care of yourself. A huge order i know. Ask the RD if there is any possible connection between the illnesses. Keep all of his doctors in the loop so they can make sure his medicines can be taken together. Hi Janie, my husband has ankylosing spondylitis with fusing in his lower spine. But being a proud stubborn man, he is in denial. So I joined the AS forum and googled as much info as I could so that when and if he accepts it and asks for help and support I will be here. He gets bad foot and hip pain. And about every 6 months he ends up nearly crippled with back pain and visiting a physiotherapist, who starts him off on a pilates excersise programme. He refuses to accept it so therefor doesnt take any medication except the occasional ant-inflamatory. I get so angry as I know with the right medication he could prevent more fusing. All the best with your son and I hope they can get it under control for him. Thankyou so much guys, today has been an absolute stinker. I feel just so overloaded, I really appreciate your answers, thanks. On top of everything My fave Uncle Paddy died today, only got diagnosed with leukemia a week ago and was told he had 6 weeks to live, I know he was in terrible pain so he is now in a better place. A little info for you, he is Paddy Clohessy from Angela's Ashes, Frank McCourts best childhood friend. Thanks again guys, hugs Janie.XX Aw Janie, I am so sorry ~~ huggles and prayers Cathy

I am sorry for your son's sufferings.. Its so hard when it's our children.. but Milly is right .. you MUST remember to take care of yourself so that you can be there for your boy.

I have no experience w/ AS.. but I was DX'd w/ JRA at age 10... it's difficult to deal with as a child.. It was hard to have life limited at that age.. but there weren't the meds available now back 40 years ago.

I have a friend who's 12 y/o daughter has JRA.. she's on enbrel and she really doesn't "stop" for the disease ...

I wish you strength and health to help your son w/ his medical issues.

So sorry to hear about your son's diagnosis. Tough at his age - he's lucky to have you in his corner to help him along the way. Keep strong.I am so sorry to hear about your son's diagnosis, and your uncle's passing--what a shock! Will be sending prayers your way.

I often wonder if I have AS because of the asymmetry of my joint involvement, always had problems with achilles growing up, and have hip/sacroiliac pain now. But spine doesn't appear involved. If I ever get that dx will make sure to pm.

Oh man Janie, I am so sorry to hear about this..

sending good thoughts your way..

So sad, and sorry to hear this.

I don't know if these guys treat Ankylosing spondylitis, but you can only try:

http://www.thearthritiscenter.com/arthritis_info.htm

If they can help, then go for it, you have to get busy for your son's sake.

Also start looking at diet, I'm a strong believer that the foods we consume can be the triggers for these types of conditions.

Your on the right track, you need to talk to as many AS people as possible, there must be a few of them out there that have positive results.

Sorry I can't add any more.
I'm so sorry, Janie, but hopefully your experiences will be a benefit to getting your son the right care.

Someone with AS posts on Roadback; you could search AS there, I'm not sure what they are on, but I know the posts have been positive. hi janie sorry to see your son has all this going on..
sorry i dont know of these conditions
wishing you all well Boney

Janie, I'm so sorry!! It's so hard, I can only imagine it, as I look at my little daughter, tomorrow she will be 4 months old... It's hard to accept, yet you must fight for him and he will be fine, I'm sure he will!

all my best wishes,

miruna

I don't have kids but I was dx at that time if you wanna talk. Goodluck!

More importantly now than ever you need to emphasize his education and getting a higher education. His best bet will be something with computers or medicine. The less he is forced to use his body the better he will be at being able to use it when he wants.

I hate to hear of the little ones getting sick, this crap is bad but you need to let him know it is not the end. He can still lead a productive life, just not in sports or something tuff. I curse myself everday for not preparing for the future better and getting my degree. I thought I was indestructible, moving fast and living hard now I worry for my family more than ever because science cannot or will not find a cure for this.

Wish him our best and I will pray that a cure is found especially for the young ones.