[kay159]

Hi there
Im a 12 year old girl whos recentley been diagnosed with RSD. The problem started when I sprained my ankle 18 weeks ago. We rested it and after 5 days it got worse so my mum took me to the hospital where they x-rayed it and said i wasnt broken, they send me home and told me to rest it and ice it. After 2 weeks it got worse I had discolouring, temperature changes, swelling, sharp stabbing pain, burning pain and I could feel a spasm running up my leg., so my mum once again took me to the hospital, where they reffered me to physiotherapy.

I had 6 weeks of physiotherapy and hydrotherapy twice a week, both of which made my ankle worse and it started turning out into eversion. The physiotherapists said that it wasnt going to work because there was nothing wrong with me and that I was holding my leg in that position to get out of school.

My mum went mad with them and immediatley took me to another hospital where they immedietley admitted me. I had several blood tests which confirmed I was at risk of developing Athritis. The consultant there told me and my parents that they suspected it was RSD but to be totally sure they had to reffer me to another hospital for me to see an RSD specialist. The next day I was reffered to the RSD specialist who told us that it was RSD and that he had to peform a nerve block. The day after I went to theatre for them to peform a nerve block which had no affect. I was put on Gabapentin tablets (900mg a day) which made me really wobbly, can anyone tell me if this is a side effect?? I am also having breathing difficulties, my mum rang the hospital and they said it was probably a cold and to leave it, but I have no symptoms of a cold.

Can anyone please provide me some information about RSD please?
Sorry its so long.
Love
Alison

[InHisHands]

Alison,

If you are looking for a simple read about what RSD is, what it does and how to treat it, read this page from RSDSA.com:
http://www.rsds.org/2/what_is_rsd_crps/index.html

RSD fact and fiction:
http://www.rsds.org/2/fact_fiction/index.html

RSD youth:
http://www.rsds.org/4/youth/index.html

RSD patient stories:
http://www.rsds.org/4/stories/index.html

You can also find sites in the above "Useful Sites, Links, Articles" section. HTH!

P.S. I did the PT for a while too, and it made things worse. It doesn't always help. The aquatic therapy is supposed to be very good for RSD, so you might want to keep at it.

BREATHING: possibly a reaction to the gabapentin... I'd call the doctor!!

[bassman]

Alison,

First, welcome to this community. It's too bad you have this terrible condition happening, but take whatever comfort you can from knowing you are not alone. There are a lot of caring people here.

I do not know the specific drug you mentioned, but you could very well be having some side effects. Trouble breathing? That is not something to fool around with. Have your mum insist they try something else. There are plenty to try. A lot of people respond very differently to every drug, especially powerful ones like what is used to fight RSD.

I am viewing and responding from work, so I can't take a lot of time with RSD information, but there is a ton of it out there. Look at the top of the main page for "useful links" and you will find many interesting articles.

Many have said that early detection is a big help in successful treatment. The fact that this is so new, and because of your young age, may work in your favor. I really hope so!

Glad to meet you.

Mike

[Desi]

Hi ya Allison!! what a pretty name! I am on Gabapentin also. Your only 12 yrs. old and I believe that is way to high of a dose for a 12 yr. old! Just my opinion here. Maybe you have anxiety? please talk to your Dr. and see what he/ she says! with what Mike said :"You don't fool around with some medications"! I would however like to say hello and welcome you aboard! love and hugs to you Allison post often.. we are here for you sweetie. Love, Desi

[InHisHands]

Desi,

With adults the safest dose is 3600 mg- 3800mg as far as I know, from several different doctors. I am on 3300 mg, and my neurologist is considering increasing it from there. I am 17 though, and an adults size and weight.

With a 12 year old, I believe, from what I have been told from a pediatric doctor, she would safely use 1800 mg. So, I think that there is still room to move, though you do have to take into consideration height and weight.

HTH!

[frogga]

Hey Alison,

Welcome!!

I just wanted to say that LOTS of people that are younger get better from RSD and go into remission pretty quickly! I have had RSD since I was 16 and I know alot of people who are younger who have gone into remission and recovered from RSD - so keep cheerful (if you can!) there is hope! If you want a message board which has a larger amount of younger people (these guys are great! but sometimes you might have concerns which are better dealt with by people more your age) then... http://shsskip.swan.ac.uk/
and it has a yahoo group.

I really hope that you get better soon and that you get things sorted. I hope the breathing gets better - do you think it is in relation to the pain?

Sending you love and hugs and hope

Frogga xxxxxx

[Imahotep]

Good luck.

Ask your mom and doctor about a beir block. This is a procedure where they inject a drug into the limb after stopping the blood flow. It can be effective if done early and is the normal second step.

Time is of the essence since the disease becomes resistant to treatment after a couple years.