son still home from school | Arthritis Information

 

HI guys, my 11 y.o. has been a little better, he is on pred and nurofen and panadol at present, he weans off of pred by Weds and then starts antiinflammatories.  He still has spinal pain and shoulder, knee and heel pain but definitely not as severe.  I think I will send him to school Monday, I have told him to try not to think about it and try to enjoy his day with his friends.  He seems most frightenend at night and  has shown an interest in writing on this board?  I told him I would have to think about that as I don't want him to know too much.  Perhaps I could get him to send a PM to a couple of you?  Anyhow myself, I have had awful ribs, right hip, and this morning the first time a really painful left shoulder.  My rheumy said he feels I also have AS as my ribs and spine and SI's are so bad, I am getting stiffer all the time and my spine deteriorated rapidly with OA between August last year and April this year, pretty scary.  I must admith though generally I am feeling better overall as I am back up to 12.5mg of MTX, although on Thurs after the shot, I had an awful tummy again and dry retching , not a very nice couple of hours.  My son and I have another rheumy appt on May 18th.  My RD wants me to lessen MTX and Pred to enable me to get a  really swollen joint count and inflammation so that I can qualify for Rituxan, can't say I want to do that.  My GP thinks its cruel.  Let me know your thoughts.  Janie.XX  A difficult one for your son, at first thought I'd be inclined to keep him away from the board but after further thought tonite, I might change my mind.

As for your self, if you think the Rituxan could help then I would be willing to suffer just so I could give it a go.
Just going off the pred might be worth a try.
Hi Janie. I'm sorry to hear about your poor boy! I've had my wisdom teeth out this week, so I haven't been able to do/type much... _popupControl(); Gee Janie is there another "kid" orientated board he can post on? I'm just thinking of your own need to have a little privacy also.

Liz knows of a kid board.  Let me email her. Janie, the board I posted to you before was international, but doesn't have a kids section.  This one is American, but has a parents & teens section: http://forums.spondylitis.org/ubbthreads.php?ubb=cfrm

Maybe you could start by looking at it on your own, then looking at it together, so you're prepared for what comes up.

 

I hope things get better for you both soon.  I agree that what your RD is suggesting is cruel, but if that's the only way to get a chance to try a stronger med, it might be worth it.

 

Gentle hugs.

Janie, one more thing.  I know he's not really a teenager, but I found another group: Spondylitis Web Info for Teens (SWIFT), http://teens.spondylitis.org/.

hi janie sorry to be reading about your son i hope he
is feeling better soon.. Oh my sweet Janie I am so sorry to hear of this.  Yes, I know of a wonderful board for parents with kids that have JIA.  They are just the best bunch of women I have had the honor to know.  They are just so nice and so knowledgeable.  They really have it going on. 

The website addy is  www.kidsgetarthritistoo.com  My name over there is DannisMom.  I have posted for a few days since Danny had been in the hospital for a couple of days and I just didn't have time.  He is much better and home now tho.  And of course our weather is wonky and I am flaring really badly now lol.  So even with the laptop, I have not much felt like being online lol.  But I will look for you there.

Your PM box is full hunny.  I tried to PM you and couldn't!  So I will take the chance that people will not harass me and give you my web email addy here.  It is tattodcheesehead@gmail.com

Very gentle hugs to you and to your son.  Unless you have been thru something like this, no one can really truly understand the emotions that come with it for mom and for the child stricken with this.  The ladies at KGAT have just been incredible to me and to my family and you will love it over there also.  Janie dear, if you need to talk about anything....you have my email.  I will check both my email and the website thru the day off and on.  I will also check tomorrow off and on because I do not know the time difference for where you are at in AU.

Oh yes one last bit of info....I got my knee replaced!!  WOOOT!  It was done on March the 20th.  We couldn't be happier and the recovery is very well. 

Ok I must run.  I am flaring pretty hard and can't really sit here anymore.  I loves yas dearly Janie and can't wait to hear from you!!!
I hope your son feels better soon.  I have a son around the same age who has some health issues (though nothing like your son's) and it is so hard on them.  My prayers go to both of you.  I am with the group who votes to find him a board of his peers to participate with.  And even then, as his parent, I would monitor postings.  Thankyou so much everybody for your input, I will try all the links suggested and Liz, I have room in my PM box now, I will write you later, hope thats ok, I am very fatigued at present and can't think straight.  Love Janie.  You are all so kind, thankyou again my friends. Love and hugs Janie.XXXXX 
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