[terry]

My 12 year old son has Regional Pain Syndrome in his stomach wall - I have yet to find someone with a similar story. He was on amitriptaline with no success. He has just started neurontin - 900mg per day. Lately he has extreme weakness in his legs - to the point of collapsing. The weakness is not new, it's just much worse - to the point we have to walk him to the bathroom. Does anyone have advice to give???

Thank you.
terry - mother of 12 year old boy

[ali12]

Hi there,
My name is Alison, I am 12 years old and I suffer from Reflex Sympathetic Dystrophy in my left leg and right arm. I also suffer from "balance problems", my mom as to stand behind me whenever I am trying to walk somewhere because my leg shoots out in front of me and I fall backwards. Whenever I go anywhere in public I have to use a wheelchair.
If you want to chat I will be more than happy to help you, my email address is alz2k7@fsmail.net you can email me whenever you want to.
I am sure that my mom will be more than happy to talk to you or give you advice too
Thanx
Alison

[ali12]

Terry
Ali's mum here - Just to clarify, Alison was put on neurotonin also and this coincided with her balance loss.
She was taken off it as one of the known side effects is weakness
It transpired that the balance problems were not caused by this, rather than an exacerbation of RSD symptoms caused by a bier block carried out at the same time
In Alisons case even the slightest injury or aggrivation to a RSD affected area can cause a massive flare up of symptoms as we have seen twice in the last three months with her arm
Please continue to walk your son, no matter how hard that seems for both him and yourself. It is really important that you keep circulation and movement going as much as possible to prevent a spread or worsening of symptoms
As you son doesn't have RSD in his legs I would think it more likely that he is experiencing side effects of the drug - when all is said and done these are children taking adult dosages of medicines which are not always licensed for use on people under the age of 16.
It may be that the dosage is too high or has been increased too rapidly
Good Luck and let me know how things go
Andrea

[terry]

Hi Ali and Andrea,

Thanks for your reply - you have a very special girl there - she was very helpful to me when I first introduced myself. You really are special Ali.

We think it might be the medication too. We went to the ER on Friday, 3 doctors examined him, but they found nothing wrong with him neurologically and sent us home. We are just so worried because of his legs giving out on him. Thank goodness for the computer and video games - he would be lost without them! He got wii for Christmas and played some in the beginning, but now is too weak to play.

Thank you for your advice and we will speak to the doctor about the weakness - we paged him this morning, but he hasn't contacted us yet. By the way, we live in Haddonfield, NJ, USA!

Have a wonderful day and thank you for your kindness.
terry

[Vicc]

Hi terrry,

You don't know me and you can't quickly confirm this, but I claim to have read -- and saved -- more research abstracts than anyone else here, and I'm an Internet "old-timer" and have been talking to RSD people for ten years, so when I say I have never heard of a physician trying to link complex regional pain syndrome (CRPS) to any abdominal dysfunctuin.

I don't research anymore, but people post a lot of links here, and I try to keep current on the latest RSD/CRPS fads. but I'm sure I would have noticed if anything had been posted here.

It may be that the doc is talking about some other kind of complex pain syndrome, but from the scrips you mention, it sounds like he's treating CRPS. I would love to read his rationale' but doc's don't explain stuff to trouble-makerss like me. Maybe he explained something to you.

You mention weak legs and I would be more comfortable trying to guess if I knew a little more: Stuff like, when he was injured, the kind of symptoms and whether they have changed; I think most of us feel we understand a bit more when we know these thing...Vic

[terry]

Hi Vic,
Thank you so much for your reply and interest in my son. Here is some back ground on my son - a year ago December he started being fatigued after activities - so much that last Christmas vacation he was too tired to play with any of his friends - I then started having blood tests done because I thought maybe he had mono or something. The tiredness continued and during the summer he started complaining of stomach pains - they would only last a moment and then they would disappear. We thought maybe he was allergic to milk so we cut that out - but that didn't appear to do anything. He continued with the tiredness throughout the summer and then in Sept. he went paint balling with some friends. The next day he was exhausted. On Tuesday night of that week he complained of a sore throat and had a very swollen gland - the next day the throat felt better but the stomach pains started and since then they have never stopped. He was treated for possible constipation - not completely emptying the bowel, he's had an upper GI, and an upper and lower endoscopy with biopsies - all normal. So I guess through the process of elimination they diagnosed him with this. It is in only one spot of his stomach - it is always at a pain level of 6 and he has intermittent bouts of burning pains that rate a pain level of 8 or 9. He also gets another distressing pain, but he is unable to describe it - it too is level 8 or 9.

Since Sept. he has been fatigued and in pain with some weakness, but lately the weakness is bad - he doesn't have the energy to walk. He has just started taking neurontin 900 mg per day - I have to say, since he is taking it, he falls asleep faster - it had been taking him up to 2 or 3 hours to fall asleep because of the pain.

That's our story - I am happy to hear anything you have to offer. To our knowledge there was no injury - just possible constipation.

Thank you for taking the time to speak with me. Have a good day.

Terry

[dreambeliever128]

I agree with Vicc. It is unusual for a person to be diagnosed with RSD in the stomach area like that but again, anything is possible.

When is he worse? After eating, standing? The reason I am asking this, is that I was diagnosed with RSD in my right side. I have it in other places but when they told me it was in my right side, I had my doubts. I am worse when I stand too long and something you brought up was constipation due to having part of my intestines removed. In the past few days I am dealing with that pain again. I have been on my feet more but I still have my doubts about me having RSD in that area.

Is he seeing worse pain with constipation or standing too long or walking or is it the same all of the time.

As far as the fatigue, that could be Cronic Fatigue Syndrome that is coming along with what he is dealing with in the stomach. I have it and I know what it's like also so that just struck me as it might being CFS when you mentioned him being tired all of the time. With CFS also, you can have it and still not be able to sleep. I never could understand that reasoning.

Like Vicc, I was wondering if they were talking about another pain syndrome rather then CRPS in the stomach area. We learn something new everyday.

Hope you stick around. You will learn a lot here.

Ada

[debbiehub]

Hi Terry- I tend to agree with Vicc and Ada. If you tell us where you live someone may know of a good doctor in your area. Sounds like you need to see a good diagnostician! I know a lot of people with RSD and never heard of it starting in the stomach. It would be good news for you if he doesnt have it. I think I would keep searching

Deb

[terry]

Hi Ada,
Thanks for your reply. He has the pain all the time except for when he is sleeping - he experiences it sitting, standing, lying down - all the time. It is not brought on by food - he's pretty much always nauseous but will eat what he likes even though it hurts. Thank goodness for tacos and burger king chicken nuggets - not the healthiest of foods, but he will eat them when he doesn't want to eat at all. I'm lucky that he loves fruits and veggies and for the most part eat them.

I too have thought of chronic fatigue syndrome - I think he was diagnosed with CRPS because they have eliminated everything else. He will go see Dr. Sherry on Tuesday - he is a rheumatologist at Children's Hospital in Philadelphia and he is the only one in the area that treats CRPS with physical therapy, counseling, etc. I guess we'll have to see what he thinks. What a frustrating disease this is - I know we often second guess if this is what he has - but then again we're not doctors.

I wish I could find someone else with his symptoms - he has the burning pain, etc. but only in the stomach and there is nothing wrong with how his stomach operates.

Thanks again and any advice you have I am happy to hear!!

Terry

[terry]

Hi Deb,
Thanks for your message. We live in Haddonfield, NJ and we are going to Children's Hospital of Philadelphia. The chief of Diagnostics actually is my son's doctor and diagnosed him! We're not sure where to go from here if it doesn't work out with Dr. Sherry on Tuesday - I have info about him in above message to Ada!!

Any advice you have is welcome!

Terry