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Need To Find Autonomic Doc For 10 Y/o Old Roy Freeman?

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Hi all. I have a 10 y/o w several health conditions. She has epilepsy. ehlers danlos, stroke, probably mito and a diagnosis of autonomic neuropathy.

For several years she was doing very well health wise. I credited diet and the mito cocktail.

Things have worsened though over the past few months with increased dangerous seizures (status).

On of the autonomic changes I have seen is that she had increased sweating under her arms last spring but has since stopped that completely and os not sweating under her arms now. Even with activities like xc ski and gymnastics. Her stamina has dropped too. It all could be hormones or because ins stopped covering her mito sups last spring. (we are still fighting them)

In any case, I think I want to connect with an autonomic specialist. I have heard mixed things about Roy Freeman.

Any experience with him or should we look elsewhere? If it comes down to it, we would go to Vanderbilt. Do they do peds?

I feel like in order to stop the seizures, we need to get to the bottom of the autonomic stuff.

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JJB, I have went through each page I could on Vanderbilt's Autonomic website and there isn't a specific one for pediatric's. The only the I could find was on the "Becoming a Vanderbilt Patient" Page they had two links: one for becoming an outpatient, and the other for inpatient research (it did say all inpatient research pt;s are required to be 18 but special circumstances have been made) (615) 322-3218 which the contact for Vanderbilt Heart and Vascular and it says to ask for the Autonomic Clinic Assisstant. I'm so sorry I couldn't help more.

I haven't heard of the other doctor you've mentioned, but I wanted to wish you continued strength on your search. I know personally what it's like to just have to battle the dysautonomia symptoms on a daily basis and then have the seizures thrown into the mix is absolutely terrifying and confusing for the patients, family members, and their doctors. Please hang in there, things will get easier.

Sarah :rolleyes:

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jbb, in my situation my autonomic dysfunction and seizures weren't found to be linked. I don't have any triggers to my seizures, on February 2nd of 2015 it was one full year that I had began experiencing them at 27 y/old. They are grand mal and I lose consciousness and have no memory of them before or after.

"Tilt Table testing with video EEG monitoring in the evaluation of patients with explained loss of consciousness" La Rosche S July 2014 (sorry we are working on fixing the coping/pasting block for me)

It's adds an extra level of difficulty when doctors are trying to diagnose seizures with patients with autonomic dysfunction. In the beginning, despite the fact that I was having abnormal EEG's, I was told that it was my POTS just starting to change causing the passing out, then it was NCS along with POTS, and they all just looked like seizures "You aren't getting enough blood to your brain"; "You've got too much blood pooling" (they weren't wrong but it wasn't causing my seizures). Then came the specialists and the various epilepsy diagnoses. It is all very overwhelming especially when you already feel so terrible.

It wasn't until I started seeing  a POTS spec. at the Cleveland Clinic when he referred me to Dr. Nair at the Cleveland Clinic and he correctly diagnosed me with Generalized Convulsive Epilepsy and put me on the correct medications. I've gone the longest  I have in months without a seizure. He is a wonderful doctor. I wish I could be more helpful to you and your daughter.. has been inpatient monitoring for eeg yet? Maybe you can see if that can be sent to Vanderbilt/CC for review?

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Yes we have had EEG monitoring numerous times. video EEGs and ambulatory EEGs.

I tend to believe all of the conditions we are dealign with are some how linked. We also see a neurogeneticist. I think what links all of the conditions is mitochondrial abnormalities. When my daughter was first diagnosed with autonomic dysfunction, the neuro recommended we look deeper into mitochondrial issues.

We also deal with the migraines and tahcycardia issues. We went on something called the mito cocktail which helped tremenously. The cocktail is a very specifc cocktial of prescription supplements. My daughter used to have these autonomic spells every 4 to 6 weeks for years. During sleep her heart rate would jump from 80 to 180 and oxygen would fall into the 80s, 70s and sometimes 60s. The next day she would be so fatigued and vomiting all day. We were never sure if these were seizure episodes or mirgrain varient.

Either way, the supplements stopped those episodes completely. I also think the supplements helped with stamina and the sweating issues.

Last spring the ins comapany stopped covering it and this I think is when things started to worsen. She had been having seizures only 2 or 3 times a year. This past month she has already had 3 to 5 (two of them being status). We are fighting the ins compnay now and trying to get the supplements back.

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I saw Roy Freeman at Beth Isreal Boston Mass in 2009 through 2010. He was actually behind the scenes in my diagnosis and treatment. He had a team of Drs that I dealt with but he over saw everything. I'll start by saying his team was outstanding in the investigation of my illness. They performed every test imaginable in order to get a accurate diagnosis. After that it became less impressive.For me they were great for testing but I had a negative experience re treatment. I no longer see them but my other doctors still talk to them before I start any new treatments. My opinion is that Beth Isreal is a teaching hospital so they are great for testing. I would highly recommend seeing him for testing for a official diagnosis. But have back up for treatment

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Thanks for your reply. Really I am looking to gain an understanding of what is going on with my daughter's health.

She already has a DX, so my questions are hows, whys and what do to. Ultimately I am trying to correct stress the body may be going through, if at all possible.

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  • 3 weeks later...

I'm not sure where u r from but there is a dr Jeffrey Boris at childrens hospital of philadelphia. U can check him out if u google pots dr from chop. Hope this helps. Hang in there. I too am a caregiver and it is very difficult to watch our children suffer regardless of their age (mine is 23). Your in my prayers.

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