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daughter with POTS in south Fl

fltraveler
  • By fltraveler
  • Posted November 17, 2008 at 12:15 pm · 29 replies
  • Shared with the public
1 Recommendation

we have a wonderful dr. out of state but need one locally to do follow-up...live near boca..does anyone know of one

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Exercise Cancer Confusion Dysautonomia Hypotension

29 replies

fltraveler

hannah is finally on the upswing...we adjusted meds..again....cymbalta 20 in am and 60 in pm...has made a big difference in her symptoms! we see dr. iskowitz here in broward for in between followup and we are going to see dr. benke to see if hannah has ehler danlos...have a wonderful and happy holiday..

dizzybee

FLtraveler-- hope your daughter is doing well and you had a joyous holiday!! Keep us/me posted on her progress & problems, I'll try to help you in any way I can.

girlinchair

Please let us know how it goes with the weston doc, I think my mom goes to him as a neurologist and she likes him alot. Linda in Davie

fltraveler

I meant Dr. A in DC..the one in Pensacola does not take our insurance...Dr. A said it is a vicious cycle and a catch 22...she needs 2 liters but when she sleeps so much it is hard to catch up with fluids...we adjusted meds and hope she gets better with her symptoms...I am getting her up going for a walk...but she often goes right back into bed....ahhhh

dizzybee

Sorry about the mis-info, I got pieces and parts from another chat site.

FLMomma -- You are going to my doc! He is absolutely wonderful. Make sure you take all her records and be prepared to spend about 3-4 hours on the first visit (he has nice fat recliners to sit in). Take lots of notes, b/c he also has brain fog and sometimes gets lost in his train of thought.

Just give him (his asst. Leigh) a call the nite b/4 and when you are on the road, b/c he has this illness also and sometimes just can't make it in and they try to call everyone, but he has a lot of patients. He has Ortho Hypo and one of his daughters has POTS so he is very familiar with both.

I know where all the good hotels, restaurants, site seeing, etc., if you need info on that (we always stay over nite 6 hour drive for us, but way more for you).

HeartNurse

Hi Dizzybee. I just want to clear up some confusion in your message. Dr. Plunkitt did leave his old practice with Dr. Gursoy to start his own for various reasons. Caroline Shaw, PA-C has joined Dr. Plunkitt in his new practice. Their contact information is as follows:
Naples Heart Rhythm Specialists, P.A.
phone (239) 263-0849
700 2nd Ave. North, Suite 202
Naples, FL

Hopefully you and others will successfully seek their superior medical expertise! Good luck.

fltraveler

he only knows of the one in pensacola...we see him on Thursday...hate november crashes

dizzybee

FLT--did you ever get to ask Dr. A if he knows of a doc down here? Or maybe he could call Cleveland Clinic...? just a thought -- sometimes things happen when docs call each other. I hope your girl gets to feeling better, poor kid, I know it really sucks to have this and still try to be a kid.

fltraveler

so glad you have 2 wonderful choices...we go up to abdallah next week...my daughter is now having the opposite problem..really high blood pressure and low pulse! time to adjust the meds

Calista

Good news - I heard back from Dr. Abdallah's office in Va, and even tho' they are a children's heart clinic, they also treat adults with POTS! I am also going to check on Dr. Khurana to see where his offices are. Thanks to you all! We head to Vanderbilt next week for a consultation - It will be so nice to talk to a doctor who actually has a clue about what my daughter is dealing with. I have been really disappointed by how uninformed our family doctor and my daughter's cardiologist are on the subject.

Sunfish

Ramesh Khurana sees adults (and thus young adults) & is in the DC/ Maryland area...i was about that age myself when i lived there & had him as my doctor. he definitely "gets" that fainting isn't the only issue. he has an office baltimore & 2 others in suburbs of DC that are escaping me at the moment; i think his info is listed on the physician page at www.dinet.org. if you have trouble finding him though let me know & i'll work on gettting his info for you. hope this helps!
:-)melissa in ohio (but formerly maryland)

Calista

According to Dr. Abdallah's website, he only treats patients up to age 21, but I sent an e-mail to his office asking if he can suggest someone who treats older patients. I'll let you know what I hear back.

Calista

Thanks so much, I will check it out. I hope Dr. Abdallah sees young adults over 21!

fltraveler

dr abdullah at the children's heart clinic is 10 min outside of DC...he has 11 kids with pots and really understands the disorder...only 50% of pots kids are fainters so what your doc told you was incorrect...he is amazing...we travel from fl to see him every 3 months...also have your daughter join dynakids.org ...lots of kids with pots in college ..she will get great support and make friends...every summer they have a get together right outside of dc...Dr. Hasan Abdallah's number is 703-207-0586...in Annandale VA right near Tyson's Corner

Calista

I just joined this group and am so glad I found it! My 21-year-old daughter was diagnosed with POTS a year ago, and we finally have an appointment at the Vanderbilt clinic next month -- it took us 10 months. We can't find a local doctor who has a clue about POTS. We live in Tampa, FL, and my daughter goes to college in Washington, DC, but she is really struggling with her health and needs a doctor who understands POTS. Does anyone know of a good doctor who treats young adults in either the DC area or in the Tampa area? Our family doctor is generally good, but was eager to shift my daughter's care to a cardiologist who did the diagnosis, but clearly knows nothing about POTS beyond the clinical cardiovascular symptoms...The doc's attitude is that, if my daughter is not fainting anymore, she's fine.

dizzybee

Crud!! -- can maybe dr. a call him??? surely he knows of someone, they all go to conferences together and stuff. I'll see what else I dig up. bummers.....

fltraveler

called the weston dr...no patients under 18...she is in the middle of a big crash so her dc dr. wants her in the er tom. for fluids and he also doubled all her meds for now...he wants us to fly up in a week if she is able to travel....here we go again

dizzybee

GREAT!!! I'm so glad to have helped you. Take care of your munchkin and give her a hug for me!!

fltraveler

I live 15 min from weston so that would be perfect..thank you so much for the info...awesome..will call today

dizzybee

I've searched and asked around

Dr. Gursoy in Naples his Nurse Practioner Caroline Shaw

Dr. Kenneth Plunkitt used to be his partner

Also Dr. Virgilio Salanga at Cleveland Clinic in Weston, FL (outside Miami)

another site is Fightdysautonomia.org

Good luck -- please keep us posted.

I did check out the dynakids site IT IS TOO COOL -- I might have to just copy some stuff for my own use!!! :)

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