Logan 16 Yrs (adolescent) Ttt Very Soon! Where To Go??

[rmmikesell]

Hi all,

We would very much like to ask if anyone can recommend very a professional, knowledgeable, excellent hospital & cardiologist/electrophysiologist who routinely performs full Tilt Table Tests on ADOLESCENTS ....anywhere in the US. We live in the central US, but are willing to go to the best, no matter where in the US.

Please post or email me with any suggestions or ideas. Must be hospital/specialists with tons of experience & does these routinely with excellence.

P.S. Just had completely botched MRIs Monday. Failed to use the contrast (dye) for both MRIs, and only for one. Have to submit Logan to all that pain (7-9 out of 10) again as well as inject the contrast in all over again this afternoon. Ready to chew nails.....this is so very difficult & upsetting!!!!! Please pray for him today at 4:00 p.m. (Central).

Love & Peace,

Sadie Lady

[jenwclark]

I'm so sorry about your experience with the MRIs. I'll keep you all in my thoughts this afternoon.

Spike

[KellyErnst]

Logan,

The Dr. Fouad at the Syncope Clinic @ the Cleveland Clinic in Cleveland, OH perform my TTT. I don't know about her experience with adolesants. Her and her staff are very good at the dx testing, however for follow-up care I have decided not to use them. I am going to Dr. Grubb in Toledo, OH in April. I believe he is about the best Dr in my area for POTS. From other posts I have read on this sight he does treat adolesant patients.

GOOD LUCK!

[Medford1]

Hi Sadie Lady -

I am the mother of a child who was diagnosed 2 yrs. ago with POTS. I know many other families who are caring for children/young adults with dysautonomia. We all have had our share of difficulties with finding the right doctor - whether it be for TTT, diagnosis or treatment. I will share with you this important point - until you get to a qualified physician, you and your son will likely continue to have frustrating experiences. Our local doctors had no clue and still don't. Pediatric dysautonomia (and its sub-categories) is a field which has seen recognition, change and growth in only the last 10 or so years. Most doctors are ill-informed. Furthermore, care and treatment for children/young adults is diferent than adults.

There are excellent physicians who can help your son. Once you have met with a qualified physician, you will know it immediately - they understand and things start to fall into place. As mentioned in a prior post, I urge you to view the Dynakids.org site - a pediatric specialty site - and to contact their office. You can talk to people who know how to help. The appropriate care for your son as soon as possible is critical.

I remember being in your shoes - not knowing how to find the right help. It can and will get better once you are on the right track.

Best wishes.

[Sunfish]

i was 17 at my first TTT and it was done at St. V's in Toledo. for care, however, within several months i found my way to dr. grubb. he sees many adolescents along with adult patients. dr. abdallah in virginia is a peds dysautonomia specialist (though i don't know the situation for testing there). dr. rowe at johns hopkins is a peds specialist who is excellent but i'm fairly certain that he is not accepting new patients. dr. julian stewart in new york also works extensively with adolescents.

regarding testing, a correctly done TTT shouldn't have to be done differently for a 16-yr-old as long as s/he is fairly "adult sized". interpretation/treatment/follow-up would be where i would want a doctor with more experience with others in the same age bracket.

i hope you find some answers soon...

melissa

[mom4cem]

I was going to say Dr. Julian Stewart as did Sunfish. There is a website also. Here is a little snipet that I found also. http://www.nymc.edu/pubs/Chironian/Spring2003/blood_circ.asp . Talks about him with adolescents and pots.