Hi Ali and Andrea,

My husband just had me google "kara loree" there is information about her and the intensive physical therapy program - it really seems hard core - but I guess it's worth it!

Just thought you might be interested!

terry

Just read the story about Kara with interest
It sounds very much like a programme we have in the UK run by Bath
There course is a 2-3 week intensive course in helping young people come to terms with and cope with the pain they have. They run intensive therapy sessions, psychology etc alongside each other and have a really good sucess rate
I would love to take Alison there but the British NHS system seems to constantly throw obstructions in our way - namely the £25,000 cost of treatment which will only be met by the NHS if there is not a suitable local provision. Personally I feel that although our local hospital have some experience in dealing with childhood RSD (20 cases in the last 4 years) Alison would be better helped by a facility which has a more wide ranging experience of the illness and how to channel treatments to get the best results. Unfortunately at the moment the NHS see the local facility as capable of meeting our needs but I don't intend to give up on this !!!!
When people talk about sucess over here in the UK they seem to talk about remission. It would seem that a lot of people still go on to get flares every so often but can apply the techniques they have learnt to speed up recovery. Eventually the flares get less and less as time passes. Alternatively some young people "settle" for a point in their recovery at which the pain is manageable and they can return to a lifestyle which suits them
In adults the recovery rate seems to be around 50% whereas in children it is more like 75%, although of the percentage of those who do not recover many go on to see varying degrees of improvement (I tend not to dwell on the fact that there is a slight possibility that things can get worse as the odds are stacked in our favour at the moment !!!)
Our hospital team have expalined that they see either a very quick recovery over a matter of days / weeks or alternatively the process can be more drawn out with the young person tending to resign themselves to having the illness until the reach mid to late teens - I suppose it could be something to do with having the maturity to understand that they have to be the driving force behind the therapy and that they can adopt a "no pain, no gain" attitide (or at least thats what our physios and psychologist seem to think)
The problem I have in trying to cope with this illness is the fact that every sufferer is different - there are no guidelines to when and to what extent recovery will take. We can never be sure what each day will hold.
All we can do is be there to offer love and support along the way
Best wishes and thanks again
Andrea

Hi Andrea,

I really hate medical insurance - if there is a program available, why not let the child do it. It is so frustrating. I'm glad you are not giving up - it's just too important.

Have a good evening - if you ever want to email my address is warburton48@msn.com

terry

Dear Terry, ;I have a good friend who had the coma treatment with me in Germany, in other words she was there at the same time. She has RSD in the GI or intestines, in her stomach. it is very severe. she has the leg weakness and is in a wheel chair. She has a constant IV via a port for Zofran an anti nausea drug. I will contact her and see if she will post for you. I dont know if she comes here to read or post. But Ill try to find out more info for you. she told me according to her doctors, who are world renowned, RSD in the stomach is not uncommon. Hope this helps Ill try to find out more for you. However, I would take everyone's information and find the truth of what is happening with your son. Good luck til later. Sincerely, CZ

Hi CZ,

Thanks for your response. I would love to communicate with her. My son has actually been diagnosed with RND - reflex neurovascular dystrophy - but I think they are all related. My doctor wants him to keep active - it's hard because he is in such pain, nauseous and overall doesn't feel well - but I'm trying. I timed him running up and down the stairs today for 1 minute - he had to do more than yesterday and he did - but then his stomach really hurt and he was nauseous. I'm wondering if your friend did the intense physical therapy program - we're on the waiting list for this, but it will probably be at least 2 months before we get in.

How are you feeling - did the treatment in Germany help? We you sent there by Dr. Schwartzman from Philadelphia?

I wish you a pain free day & evening.

Terry

Hi Terry, I have called my friend for you and am waiting for a call back. So please hang in there, she will call back, so i do not have answers yet. But I have never heard her speak of the intense physical therapy, actually just the oposite. Yes I am a patient of Dr. S. All the ketamine treatements have been very helpful for me.. i cant do with out them. The coma was successful eliminating all pain , I have full body, including internal organs, except my legs my orginal orginal site. However I require follow up booster and am one of the people who still require meds as my rsd came back due to injury. I can tell you for me the ketamine is critical. As it the right combination of pain meds. I agree with a posting of Vicc that it is rare for rsd to begin in the GI tract. It absolutely begins in the limbs 90% of the time as it did for me. My friend we are waiting on also began in a limb. So hang in there God bless Ill be in touch soon. Sincerely, CZ

Have you ever though Chrons... My bf has had it since he was 9.. And it cause chronic pain and cramps... It went undx for many years because it didnt fit one thing..> They told him it was all in his head until he was almost on his death bed... Its just food for thought.. I am sorry he is so sick so young... I truly truly feel for him and i will keep him in my thoughts and prayers....

Hi Terry,
I am 21 years old and am in the same boat as your son. I was diagnosed when I was 16 and only recently did they associate my RSD with the problems in my stomache. I eat when the pain is really bad as I have no choice, but eating can often leave me doubled over and sick to my stomach. They are now proving RSD can affect the stomach I am the walking testament to that. If you ever want to talk my email is ysheridan93at sympatico.ca. Try stick to the rules of RSd as these really help, the cold seems to aggrevaite the condition. Also, some foods that have been linked to not help with the RSD and my nutrionist told me to stay away from also is caffine, chocolate, organ meats, especially hot dogs. And weird as it is it works and seems to not make the pain worse. Tell him to hang in there, and if you cuddle up with a magic bag against the stomache when it is really bad it can help the pain. Also, if he is really bad and does not think he can handle the soiled food from the pain smoothies with protein powder and fruit works great.

Tell him to hang in there...

Hi Ysheridan93 and Jacquelina,

Thank you so much for your thoughts - I really appreciate your input. Jesse has had an upper and lower endoscopy which ruled out chrones and any other stomach problem. He has continual pain with periods of burning and sharp, stabbing pains that are 9's. Overall his pain is 6 at all times, except of course for when he is sleeping - no pain at all.

Ysheridan - did you do the intense physical therapy treatment? jesse is on a waiting list at the Children's Hospital of Philadelphia - it might be another 6 or 7 weeks before they can take him. As far as food, nothing seems to make him feel any better or worse - I have to say he really loves hotdogs! The problem is he is nauseous as well. When did your RSD start. They have diagnosed Jesse with RND - reflex neurovascular dystrophy.

Thanks again for caring. I wish you both pain free days - I'm here if you ever need to speak!

terry - warburton48@msn.com

Hi Terry,
I really hope that the intense physical therapy treatment will help Jesse. My Doctor refered me for a programme similar to this but we haven't heard anything back yet.
I am waiting to go to Great Ormand Street Hospital in London (UK)
I will let you know when we hear anything
Take care