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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

dizzybee

Hi, I also have dysautonomia, mine is Orthostatic Hypotension. How long has your daughter had this?
How dx'd? Meds? I know I sound nosey, but if she was dx'd by a cardiologist, he may have just gave her a script for florinef -- all this will do is drive her bp sky high.

check these sites out. I'm pretty sure I remember there being a doc down there somewhere (I live in Jax area and drive to Pensacola every three months)

www.dinet.org (POTS Place)
www.ndrf.org (Nat'l Dysautonomia Research Foundation -- just don't get into their 'forum' some of the people are VERY opinionated and have some strange ideas)

There is information on where to locate a doctor on both sites. NDRF has a handbook that you can print (it's good for teachers, friends, etc.) POTS also has a wealth of info.

Let me know if you need any help. Let her know it's not too awfully bad, I've had it since I was 8 went into 'remission' for most of my teens and twenties. I'm now 45.

fltraveler

My daughter goes to a pots specialist in virginia..the children's heart clinic..she has it bad...she takes florinef 1x daily, midodrine 5x daily, cymbalta (ssri help kids with pots)...I heard of the dr in Pensacola but he does not take our insurance...so we travel to dc area...I am looking for a local dr to help with her crashes to coordinate w/ dr abdullah . She is in a bad crash now and often needs IV fluids... ER visits are so stressful for her...we belong to Dynakids.org and love it ...went to the summer conference and met drs and kids..it was great...we see dr. a every 4 months. she was born with it and had bad symptoms from birth to 7 then again at puberty ..the worst yet...she does not know any kids in the area with her disorder...my heart goes out to her and you...

Nina372

Dear fltraveler,

I share in your frustration of trying to find a local Dr. that can follow up with me.
I too have a pretty bad case of POTS.
I live in New Mexico and travel back and forth to the Mayo Clinic in AZ, the health care system hear in NM is pretty bad, but I wanted to find a dr near by so my mom and I wouldn’t have to travel so often, well it hasn't been an easy task because most the doctors I went to told me to go back to the mayo clinic, they told me they wouldn't handle my case because my condition is to rare and they have never heard of it! IM starting to wonder if that is the real reason they wont help me or if its because they are worried I will file a mal practice suit if they make a mistake.
I have no idea what to do next, so I guess I'll just keep traveling to the mayo clinic.
What are we to do?

fltraveler

the leading dr.'s are Dr Grubb in Toledo Ohio, Dr. Suarez in Toledo Ohio, and Dr. Abdullah in Virginia...we use Dr. A. ...it is wonderful to have someone who specializes in this....just hard when you crash and you are so far from your dr...that is why we have Dr. A. and would also like someone here to be in conference with him during her crashes.

dizzybee

Yep, they are hard to come by. Dr. Abdullah should know of someone in South Fl.
Dr. Grubb is the best, Vanderbilt Univ. is a close second, but they are hard to get into. Then there is always Mayo, but they are usually out of network on most insurance plans.

Interesting factoid -- Dr. Coghlan at Uof Ala. was the first to dx this phenomena on my dr. he was one of his first patients.....

If Dr. Abdullah doesn't know of anyone, let me know and I will check with Dr. T and see if he know of somebody close to you.

XX's & OO's to your precious baby -- God willing she will go into remission in her teen years as I did.

About the florinef, check w/ her doc about magnesium supplements, b/c the prolonged use of the florinef will wipe out her magnesium and folate storage. Have her drink lots of water (enough for her size).

dizzybee

PS -- have your PCP or other doc get you a handicap placard -- you will need it when it gets hot in the summer. If you are close to her PCP they might even be able to set up a room to give her IV fluids when she needs it (my PCP does this). They also sell cooling vests at Cool Sport. You can also print the dysautonomia manual on the NDRF site to give to her teachers, etc. AND she cannot do strenous exercise this will only exacerbate her symptoms -- i know you've probably heard all this, but I just want to be sure. It's not fun to pass out while trying to run track when you're that little and wake up and everyone is laughing at you....been there done that.

fltraveler

thanks for the info..she does not attend school but has a hospital homebound teacher and also virtual school....she takes lots of magnesium..I also wish to have a room for fluids for her as er trips are quite stressful...looking for local dr. to set this up...pcp does not have the facility....we have printed material from dyna and that has been useful...it is so wonderful to hear from you and your compassion is so touching...thanks

Sunfish

hi there.....i think there may be some FL docs listed on DINET &/or NDRF...have you checked those listings yet? ultimately you need to have a primary care doc who is willing to learn. this is often more helpful than having a specialist nearby, though obviously you need a specialist somewhere who is willing to work with/ communicate with your PCP. i've been at this a long time myself. i'm 28 & have autonomic failure after originally being dx with NCS at 17 & POTS a few years after that. my story is very atypical so don't let it scare you but none the less i am happy to help in any way i can. i live in ohio so am lucky to have had dr. grubb as my doc for 11 yrs now but have lived elsewhere over the years & have seen good docs in maryland, cleveland & at vanderbilt as well. at vanderbilt i was a research patient but i believe they only take adults for their research.

sorry to hear that your daughter can't get to school but great that you have the at home set-up in place as many have trouble with this. i definitely second your trying to get an outpatient set-up for IV fluids other than ER...it is infinitely better. does your PCP have any other ideas? over the years, depending on local resources, i have been able to get IVs at my PCPs office, at local urgent care clinics (MUCH better than ERs), through the "back door" at an ER via an arrangement with a doc with hospital clout, via an outpatient infusion center at a hospital (part of a cancer center &/or headache treatment center), & lastly via home health care. i was never able to get it set up at home until i was at the point of requiring IV hydration & nutrition around the clock all of the time but i have talked to some other patients who have, with the help of their doc(s), managed to get as needed IVs set up via a visiting nurse so depending on your local situation &/or insurance it might be a possibility. those are just a few avenues for you to explore perhaps?

let me know if i can be of any help in any other way. i am very involved (& have been for years) with the "dysautonomia community" so to speak. was involved with DYNA when i was younger. have worked with NDRF, currently i work with DINET & have been to conferences & involved with research with many of the top autonomic docs over the years. i was headed into the health care field myself before my health made it an impossibility so hoped to approach it from that side of the coin but now do what i can with patient advocacy/ support by volunteering, largely online due to my health limitations.

all the best to you & your daughter (& to others writing on the thread). feel free to get in touch with me if there's any way i might be able to help. . no guarantees but i'll do what i can!
:-)melissa in ohio

fltraveler

The fl dr.s are up north....does anyone know of any kids down here in s. fl? I have been on all the sites and find them very informative.......thank god for dyna and our friends online and phone calls...awareness and getting the word out...the palm beach post is doing an article on my daughter in a week...hopefully they get the facts straight..all too often ....the true representation of this disorder and the absolute impact it has on the individuals is missed. you are all my heros ...so brave with this battle...my daughter has lived with this all her life but had a few years remission from 7-11...now it is bad....thanks for the ideas on iv..definitely looking into that..all the best...my daughter keeps a quote on her desk...Just remember, every minute you spend mad or upset is a minute of happiness you can never get back...our new mantra

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!!! :)

fltraveler

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

dizzybee

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

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

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.....

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.

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

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

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.

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

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.

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