LEG PAIN ASSOCIATED WITH TUBEROUS SCLEROSIS

[JAZMINE49]

My son was diagnosed with Tuberous Sclerosis very mild.  He has the calcium deposit in the brain, the ash leaf on his body and a rash on his face and he is ADHD.  Recently he has been complaining of a lot of pain in his legs.  He says that he has a hard time running that his legs feel like lead.  He complains after he has his gym class.  He is otherwise an active child and has not had any other problems. My question is could this pain be associated with his disease?  His knees down were x-rayed and they came back ok.  He is 12yrs old. Thank you.

[Rebeccah25]

Hi I am a mom of a 5 year old little boy. He also has TSC. And here lately has complained of alot of pain in his legs. We have taken him to get x-rays and MRIs and nothing has been found. I was wondering if your son is on any meds? My sons Dr. said it could be a side affect from his seizer meds. Or it could be arithitus. I am to give him motrin every 8 hrs to see if it relieves the pain. It seems as if we have a lot in common. Please let me know if you find out anything on this...Rebecca25

[JAZMINE49]

My son is 12 years old an is not overweight.  He complains that his pain "moves" around in his leg.  He complains the most after he runs.  He jumps on the trampoline almost everyday and is in karate class.  He only complains the most after he runs.  He was diagnosed with TS around 5 years ago because he was complaining of a lot of headaches and they did a cat scan on him and found the calcium deposits.  If he doesn't run that day he is ok to do his other activities.  I am worried because I know that tumors can grow anywhere in his body anytime.  

[Quixotic1]

Why did they X-ray only from his knee down?  I ask because in kids, there is an important thing to remember.  Pain in and around the knee very often comes from the hip.  Pain in and around the hip often comes from the back.  When the pain "moves around"  is it within a certain area?  Like mostly around the knee or lower leg?  After he runs does he limp?  Does the pain ever happen when he's not running?  

Is the pain in only one or both legs?

How long does it take for the pain to subside?

If the pain is somewhat vague and hard to localize and is near his knee, ask for his hip(s) to be X-rayed.  There are two common disorders of the hip that occur in children.  He's a little old for one one the right age for the other.

Quix

[Quixotic1]

The tuberous tumors can grow in many places, but first I would investigate the other common causes of leg pain in children.  How old is your son?  Is he overweight?  Where is the pain, when does it occur and what relieves it?  Does he limp?  How long has he had it?

Does the pain keep him from his usual activities?

Also, when was the diagnosis of TS made?

Quix