Re: Any Florida families?

[Guest guest]

Okay, well to start off, I live in Florida. Near St. sburg to

be exact. It's about a 2 hour drive south of Spring Hill.

As far as pediatric neurologists in Pinellas county, everyone says

the best one to go to is Dr. Parrish Winesett. But, I am debating.

At our first appointment he scared the you-know-what out of us. I

even posted about the things that he said on this board. From what I

understand, he does not have any real working knowledge about pmg. I

am in the process of getting a second opinion. However, the next

closest ped. neuro is in Tampa (that my ins will cover). And they

are booking their appts about 2 months out. (a suggestion would be

to contact Dr. Winesett's office and see how familiar he is with

what is dealing with. His number ) And he accepts

medicaid.

As far as pediatricians go, I feel like I have one of the best. He

is in a facility that is geared more towards medicaid and lower

income families, which can be a hassle. However, he is the one that

ordered a cat scan because he was concerned that 's head was

too big. Dr. Salazar is one of those kind of peds. that really cares

for the kids and wants to see them well. He has never talked down to

me or made me feel inadequete. The only trouble is getting an

appointment with him and not one of the other drs on staff. I have

never had any issues with any of them. As a matter of fact, even

though they do allow UCF students to do their internships their,

they all seem to have the same standards that he does. The clinic is

located in Clearwater (Community Health Centers of Clearwater) and

their phone number if you are interested is (727)464-1439.

Shands hospital is one of the best. However, they do not accept

medicaid of any kind. There is also All Children's Hospital in St.

sburg. I only have one MAJOR complaint with them. It is their

emergency room. I spent 4 hours in the waiting room and 2 hours

waiting for the dr, getting treated, and released. had a

really bad bout of croup one night. I will never go to their er

again if I can help it. He did go there before that incident to get

the CAT scan and MRI done. They were awesome. And made going through

those prodcedures as painless as possible for him.

Pinellas county schools: in this county we have the school choice

program (http://www.pinellas.k12.fl.us/Choice/) this link should be

able to guide you with any questions regarding which school would be

best and how to apply. Since isn't old enough and hasn't

needed OT, PT, etc. I can't tell you which one would be best. From

what I understand, you can go through the school board to get

additional therapy. I just don't know the avenues to go through yet.

Sorry!

Medicaid: (http://www.myflorida.com/accessflorida/) this is a link

that allows you to apply online. I receive medicaid for the kids. If

you have any specific questions, I will see if I can answer them for

you.

As far as conferences, I have not been to any nor heard of any. I

can't be of any help there. But, keep trying, I am sure somebody can

give you the info that I can't help with!

mom to:

Bryon 13, Wayne 12, 11, 7, and 18 mos (BPP

pmg)

[Guest guest]

HI Sue,

I live in Port Saint Lucie which is southern florida on the east coast about

5 hours from Tampa. We go to Orlando to see a Dr. . We were

referred to him through the Lissencephaly research project at Boston University

in

Dr. Walsh's Lab. He has been very good and we have been seeing him now for

about 3-4 years. The only problem is he currently has 8000 active patients, so

I am sure there is quite a waiting list. This good thing is I have never

felt as if my son is one of 8000 but instead the one and only important thing

while we are there. He always takes time to talk with us and our son and our

phone calls are always returned right away. It is a 2 hour drive to Orlando for

us and we make it several times a month some times, but it is well worth the

drive. If you would like his info I will send it.

As far as the schools go you need to contact the school district offices.

Since your son is 4.5 it will be time for testing prior to Kindergarten - if he

will be five in time. If not then you can go through FDLRS, but the school

district will tell you how to do that. Bring whatever info you currently have

Family support Plans, Individaul Education Plans, Therapy reports, etc.. this

will be helpful in determiniing an approrpiate placement for your child. He

will be eligible for Pre-K in Florida anyway so start with the district offices.

Every county is different as far as how they assign kids to schools. I am a

behaivor specilist, formerly Autism teacher as well as a mom so I have been

around the ESE block so let me know if you have any questions. Good luck with

your move!

Joanne

Mom to Larry , 9, unilaterial PMG and Caitlin, 5