[terry]

Hello,

My name is Terry. My 12 year old son has recently been diagnosed with regional pain syndrome in the wall of his stomach. He suffers from extreme fatigue and constant stomach pains with episodes of burning and sharp pains. The only time he is not in pain is when he is sleeping. Does anybody have any suggestions on getting him help - he has been out of school since Sept. and i cannot get him a consultation for a physical therapy program until March - any recommendations - I am currently working with Children's hospital of Philadelphia.

Thank you for any advice you may have.

Happy New Year!
Terry

[Alffe]

Hi Terry and welcome to NeuroTalk. I'm so sorry your son is having such pain.
Not sure where to direct you but here is the link to our Chronic Pain forum..

http://neurotalk.psychcentral.com/forum10.html

And Happy New Year to you also!

[AfterMyNap]

Hi, Terry! Welcome to NeuroTalk!

I'm sorry to learn that your boy suffers so. I hope the new year will bring him answers and relief.

[ali12]

Hi there,
I can totally understand what your sons going through.

My name is Alison, I am 12 years old and I suffer from Complex Regional Pain Syndrome or Reflex Sympathetic Dystrophy in my right arm and left leg. I have been out of school since March, and I am hoping to start online tuition soon. Does your son have home tuition or online schooling? I miss my friends a LOT.
I too am in a LOT of pain, I don't get to sleep that much. Is your son on any medication? if so are they helping with the pain? I am currently taking 75mg Lyrica 3x daily, 10mg Baclofen 2x daily and 75mg Tramadol 3x daily and they are doing nothing for my pain. I have also been on Morphine, Paracetamol, Gabapentin, Ibuprofen, Amitriptyline and more.
If you or your son ever want to chat I am here.
WELCOME TO NEUROTALK, YOU WILL FIND MANY CARING, LOVING AND SUPPORTIVE PEOPLE HERE
Thanx
Alison

[CRITTER]

HI TERRY & WELCOME!
IF I WERE YOU, I'D GET A SECOND OPINION. I HAD CONSTANT STOMACH PAIN AS A KID (STILL DO) AND IT WAS CALLED MANY THINGS BY MANY DOCS WHO WERE ALL WRONG. I NOW KNOW IT'S A RESULT OF MY AUTO-IMMUNE DISEASE. EVERY GUT MALADY REQUIRES A DIFFERENT TREATMENT & IT'S SO IMPORTANT TO GET THE APPROPRAITE TREATMENT. I HAVE HAD SO MANY DOCTORS PLAY THE COP-OUT GAME THAT I FIND YOU NEED TO GET PRETTY AGGRESSIVE TO GET ANSWERS. HAVING A COMPLETE PHYSICAL, A HISTORY, IMMUNE FUNCTION TESTS, ALLERGY TESTS, AND LOOKING FOR DIFFERENT TYPES OF BACTERIA IN THE GUT CAN HELP TO INDICATE JUST WHAT'S GOING ON.

HE COULD HAVE ULCERS, IBS, COLITIS, STRESS, A ZILLION OTHER THINGS. WHEN A DOC PUTS A VAGUE TITLE ON ANYTHING WITHOUT DIGGING, I GET HISSED OFF & DEMAND THAT SOME DIGGIN' GETS DONE. I'M NOT A PUSHY PERSON, I GOT EDUCATED AFTER YEARS OF GOING TO DOCS WITH NO RESULTS AND SUFFERING THE ENTIRE TIME AS WE TRAVELED ALL OVER FOR HELP. IF ONLY WE'D HAVE HAD PC'S BACK THEN! ARM YOURSELF WITH AS MUCH INFO AS YOU CAN DIG UP ON YOUR OWN & BE PREPARED FOR A BATTLE, BUT YOU CAN WIN IT.
I SURELY HOPE YOU GET SOME REAL ANSWERS! NO KID SHOULD HAFTA HURT LIKE THAT!

HUGS & PRAYERS
CRITTER

[Darlene]

Terry,

Hello and welcome to NeuroTalk. Great to see you have come to be with us. You will find a great number of caring, supporting members here willing to help each other as they can.

Happy New Year to you also. Hope you have good luck with your son's problem. Again welcome, looking forward to seeing you around.

Darlene

[terry]

Hi Ali,
Thank you for your kind words. I would love to chat with you. I wish my son would, but I know he is too shy at this time!! You know how boys are! My son, Jesse, is taking 30 mg of Amitriptaline - I think he is changing his medication today to neurontin. I'm so sorry none of the medication is helping you - I find this so frustrating - all I want to do is help my son and I don't know how. I recently learned about Dr. Robert Schwartzman from Drexel University that sends patients for treatment in Germany - maybe this is something you can mention to your parents.

Jesse has a tutor come everyday for 2 hours. We were going to try school today, but he couldn't do it. He is afraid to go back because it has been a few months and he really just isn't up to going. He even turns down playing with his friends - which I worry about. Do you see your friends often - I hope so!!!

Thank you for your response and I will keep in touch!

terry

[terry]

Hi Ali,
I wasn't how to reply to you, so you may find a message to you somewhere else!! I'm new at this!! I wish I could get my son to talk with you, but he is so shy!!! Maybe one of these days. Just in case you didn't see my last message, my son, Jesse, is on 30 mg
of Amitryptaline - it has not helped at all. The doctor just prescribed neurotron - I'm not familiar with this drug. I am so sorry the medication is not helping - I can only imagine the pain you are feeling.

Jesse has a tutor come 2 hours a day so he can keep up with school - he is just not up to going or socializing with his friends - we encourage him to, but he says no more than yes.

What are some of your hobbies? Jesse loves to play video games - wii, guitar hero and rock band live - I don't understand any of them!!

I use to be an elementary school teacher - what would you like to do when you grow up?

Thank you for your message and I wish that the new year will bring you relief from your pain.

terry

[Alffe]

terry....you can often find Ali here...http://neurotalk.psychcentral.com/forum21.html

*grins at Ali....

[terry]

Thank you for your advice. I think his diagnosis is a result of not fitting any other cause. He's had an upper and lower endoscopy, blood work, stomach xray - nothing wrong. His symptoms were first fatigue about a year ago - since then we were taking blood tests thinking it might be mono. In the summer he would complain of stomach pain once in a while - we thought dairy - then in Sept. he woke up with a sore throat and a swollen gland, that went away and then the stomach pains began and never stopped. My brother has scleroderma - I've often wondered if this is somehow related.

What is your diagnosis - do you mind me asking? I wish you well and I thank you for your response.
Terry