Where can I find a doctor

[jennk]

We were just told our 7yr old son could have autonomic dysfunction because of the symptoms he has.  I have been reading up on this and he has most of the symptoms.  This started happening about 2-3 months after he had a vase to hit him on the head and he had to have staples in his head.  He sweats so bad and he does have seizures now.  They have sent him to a heart doctor because of the irregular heart beat and it speeds up for no reason.  His ears and sometimes face gets fire red for no reason at all.  Where can I find a doctor??  We live in Tupelo, MS and there are no doctors around here.  Can you help?? Please??

[halbashes]

I'm sorry to hear about your son, and I hope he will feel better very soon.  Autonomic Dysfunction is normally diagnosed by either a Neurologist or Cardiologist.  Diagnosis is based on history, examination, and a Tilt Table Test.  If you're having trouble with proper diagnosis, I'd recommend looking into a teaching hospital.

Has he seen a Neurologist?  Was he given a CT or MRI at the time of his head injury?  Has he had an EEG since the onset of his seizures?  If not, I'd recommend asking your pediatrician for a referral to a Neurologist.

You also mentioned that he has seen a Cardiologist.  Was this doctor able to offer any insight?

[jennk]

He does have a Neurologist at a Children's Hospital (Lebonheur) in Memphis , TN.  He is on Trileptal.  He has had several EEG's and they have shown seizure activity every time so they are treating the seizures.  The Cardiologist is the one that suggested this but he said he has not treated this and he didn't know alot about this.  They didn't do a MRI or a CT when he was hit but he had one last year and they everything was good.  He just has a weird behavior here lately and we just keep getting tossed around by doctors.  The doctor is looking for a doctor or he said he was and that has been 3 weeks ago.  We are just frustrated.

[halbashes]

I take Trileptal as well.  Have you found it helpful in controlling his seizures?  Also, have you brought up the possibility of Autonomic Dysfunction with your Neurologist?

[jennk]

I have not because we were waiting to see if his Cardiolagist could find a doctor.  She didn't even think of this.  I will call her tomorrow.

[natesmomohio]

My son was diagnosed by a pediatric cardiologist. He is the primary care coordinator now. My son also sees a pediatric neurologist and gastroenterologist. I would recommend a highly trained pediatric cardiologist who is experienced with dysautonomia.  It takes a lot of coordination to get the symptoms under control. You have to be proactive and advocate for your child's health.  Sometimes, it feels like a second job.

I wish you the best.

[Heiferly]

I see you are going to Memphis for his neuro.  I know it's not terribly close, but Vanderbilt (Nashville) has a renowned autonomic clinic.  I do not, however, know if they see children.  Does anyone else here know if Vandy sees little ones?  At any rate, Vandy is definitely the biggest autonomic center I know of in the South ... I would imagine they could at least give you a referral to someone in your area.  

[jennk]

I did find a doctor at Vanderbilt and they don't see children and they did tell me about a doctor but it is in New York.  If we have to go we will.  Just didn't know if there was anyone closer.  Thanks for any suggestions

[jennk]

What are some of the symptoms your son has?  His cardiologist is looking for a doctor but it is taking to long.  What kind of tests do they do?

[Heiferly]

I went digging for an old article I'd read about a boy being diagnosed with POTS after they'd mistakenly thought he might have been having TIAs, hoping it might turn up the name of a knowledgeable children's hospital.  

Here's the article:  http://www.nytimes.com/2008/06/15/magazine/15diagnosis-t.html?_r=3&oref=slogin&oref=slogin

But as I read it again I realized that actually the docs down in Atlanta were stumped and ended up sending the family up to Philly.  I presume the "study" the doctor ordered to confirm the diagnosis was a tilt; I don't know if they have further autonomic testing available there or not.  And again, it'd be quite a hike from where you live.  I'll let you know if I come up with anything closer.  

[jennk]

Thank you so much for your help and the info.  I don't feel alone anymore with a crazy thing no one has ever heard of.