Hi there,
Just a quick message to say "Good luck tomorrow, I hope everything goes Ok, please keep us posted"
Thanx
Alison

Hi Ali,
Thank you and I will let you know how it goes! You last said you were hoping to have a tutor or online school - any news about that? Jesse, my son, has a tutor for 8 hours a week - he's lucky to have it, but it is difficult for him. He is tutored only in Social Studies, Science, Math and Language Arts. When he was in school, his favorite class was gym - he really misses that. Do you have any hobbies? My son likes to play video games. I like to watch old movies. We both love animals. We have a dog, Peanut - she's a papillon! We also have a pet mouse called Creme!!

Have a good day.

terry

Hi there,
No we haven't heard anything back about the home/online tuition. I really hope that I can start doing some school work soon as I feel that I am missing out on so much. I find it hard to concentrate because of the pain though. My school used to send work home for me but now we have to wait 3 weeks before they will send any work for me. I miss my friends a LOT. My favourite lesson at school used to be Science, I liked gym too, but I only liked playing hockey, basketball, swimming and dance.

My hobbies are playing on my nintendo wii, psp and nintendo ds, I also like card making and scrapbooking. I own a LOT of pets, I have a springer spaniel puppy called Jack, 1 chinchilla called Tabatha, 1 russian hamster called Mishka, 2 hamsters called Dolce and Gabanna and a African grey parrot called Sparky.

When I grow up I want to be either a vet or a hairdresser

Thanx
Alison

Hi Terry,

I can see you have been getting such a great response this is truly a great site. I do agree with everyone, I have never heard of RSD/CRPS starting in the stomach, just never. I have had RSD for 4 years.

Just a note on Dr. Sherry, I have read a lot about him and I think you have chosen one the best doctors you possible could have. I also go to Drexel I think there is some kind of connection between the two facilities I see Dr. Schwartzman. Good Luck and keep us posted.

Hi Ann,
Thanks for your response. I had contacted Dr. Schwartzman, but he doesn't take children. He referred me to Dr. Level in Boston, but then I finally got the appt. with Dr. Sherry - my appt. was suppose to be March 10, so we were so happy when we received the phone call that he would open up more time slots. Have you participated in the study that Dr. Schwartzman is doing with Kenotine or something like that? I think he is taking candidates for another study. Where is your RSD - I hope you have a good day.

thanks again,
Terry

Hi Ali,
I think you would be a great vet - especially because of your love for animals!! Jesse use to have a hamster named Treasures - she was so sweet!! I use to want to be a hairdresser when I was younger too. You should do whatever makes you happy. My daughter, Ellye, is 16 and is looking at universities. She wants to go for art. She is a wonderful artist!!

Have a good day with no pain!!

terry

Hi Terry and all.
I have been reading your thread on your son. So sorry that you are having to go through this all. I know it must feel so vast to the both of you.

Ali is such a good support person here for everyone. I only joined a few weeks ago but already feel a part of this forum.

I am a lampworking artist and make beads along with my day job ect. There are some great art schools out there. Hope your daughter finds the best one for her skills. Tell her to visit wetcanvas on the web. There are some fun things to get involved in. And she can pick her area of art to talk to others. There are challenges every week and you can post to the thread.

My son who is MR got a portable PS from his sister. I can't seem to get it out of his hands when he is home from school. He is 14 years old. We adopted him when he was 3.

We have a miniture cat called a munchkin..her name is woodstock. We have a LaPerm cat, curly hair, whiskers, eyelashes..named Moses. WE have dog for my son named Mercedez that was a rescue. I also have three daughters who are all living on their own now...starting to downsize.

Hi All,

Jesse met with Dr. Sherry on Tuesday and was diagnosed with RND - Reflex Neurovascular Dystrophy. His plan is to get Jesse into an intense physical therapy program. Unfortunately there aren't any openings yet and it will probably be 2 months before he starts. In the meantime, he wants Jesse to return to school and start trying to resume a normal life. The doctor makes it sound so easy - if only it were. Jesse is going to try 2 hours of school on Monday and we are forcing him to play with his friends, take walks, try to skateboard, and play wii - I never thought I would here myself say go play your video game and get some exercise! This is going to be very difficult for Jesse, but he's going to give it a try - I'll keep you posted! He is also being taken off all of medication - the doctor feels it interferes with recovery with physical therapy - which is okay because the medicine didn't bring him any relief.

I thank everyone for their kindness and support and I wish you all a pain free day.

terry

Hi Terry, Alis mum here
Thanks for keeping us posted
The hospital said it would be best for Alison to resume some sort of normal activity but as the winter has set in here that has gotten harder.
She did start going back to school for a few hours each day but the amount of pain she was in and the lack of accesability in the school for the wheelchair made it a nightmare. By the time she was transferred to class she was wiped out !!!
Alison does try and maintain some contact with firends but that is sporadic. I tend to find that we can't make plans - we basically have to go with the flow and take each day as it comes
We also attend regular physio sessions which, I have to say, did help her arm and the therapy we learnt for the arm does seem to keep the flares at bay for the mostpart.
The problem is her leg. It is so painful that she cannot touch it and it has really bad spasms and dystonia (basically the foot is turned out to the side). From day one she had physio but all we found was that the foot / leg battled against it and it got worse after each session.
I do think some normal movement and sensation in the foot would help but it is so hard to make a child believe that increasing the pain for a while may get some sort of benefit longer term.
Like your son, Alison has not responded to meds, but she is being kept on them for now as the hospital feel they have to find something that takes the edge off things - they are looking at ketomine and morphine as a last resort.
If I could offer one word of advice it is that your son should keep moving as much as possible - even a little every day. We saw a vast deterioration in Alison when she could no longer walk - both physically and mentally (depression etc)
Keep your chin up - We are all here to support you
Hopefully we can get your son to talk to Ali someday soon !!!
Love
Andrea

Hi Andrea,

Thank you for your words of encouragement. Your daughter seems like such a sweet girl. I use to be an elementary teacher and she reminds me of one of my students named Allison! I'm sorry her foot gives her so much pain - why do such things have to happen to children. Has she had the intensive physical therapy program? I know Dr. Sherry has treated over 1400 children with a success rate of 90 percent - I hope Jesse doesn't fall into the 10 percent - I'm going to keep a positive attitude. It's only been 2 days since the doctor told us to try and resume a regular schedule - it's hard. Jesse just wants to rest and we keep pushing him to do things - I feel bad because I know how I would be if I didn't feel well. I'm going to take your advice and try to keep him active. If there is anything we can do for Ali let us know - I'll try and get Jesse to come online - I think it would be nice if they could communicate with each other.

Thanks again for your support and know that Ali is in my thoughts.

terry