Re: Arrhythmia Qestion for smginley or anyone with POTS and orthostati...

[Guest guest]

Hi Bernie,

Ginny actually has VEDS with all those issues, but in our family we are also

more hypermobile than most VEDSers. We were actually diagnosed with HEDS

first. I think you will find a lot of EDSers with different types but similar

issues or problems.

A lot of Ginny's issues do get worse around the time of her period. She is

on Inderal now and it seems to help with some of her issues, such as fast heart

rate, fainting, dizziness, and weakness/numbness in her extremities. They

hesitated to put her on anything like Florinef, or other drugs usually used for

POTS, as her blood pressure goes up sometimes too. It seems to be very

labile....goes up and down for no reason and without much warning.

A Holter monitor might be something to think about and may catch the

arrhythmia. If not they do also have a new test where you have the monitor for

a

month and call on the phone when the arrhythmia is felt. I don't know how well

this would work with a teen, but as long as she comes to you or would go to the

nurse if she is in school when it occurs, they may catch it that way.

Ginny has gone through physical therapy for her knee problems (torn ACL and

meniscus). Now she still has some problems with her knee, but she is supposed

to wear her knee brace if she is doing any long walking. She doesn't always

comply.

As far as the emailing with Ginny is concerned, whatever you think is best,

you are her mother. Ginny is also very " immature " , unfortunately. Although

given all of her learning and physical disabilities, I am proud of how well she

is doing. She will be graduating with an IEP diploma this year and is already

accepted into the NYS VESID program. This is a vocational rehab program for

disabled individuals. She will receive guidance and job coaching for

employment. They have also referred her to the Learning Disabilities

Association

where they are working with her so when she is ready she will move into a

supervised apartment setting. This will allow her to live on her own (which she

will

have to demonstrate) with some supervision, such as a social worker over

seeing financial issues and medical issues. I, of course, had always thought I

would be this person....but I see now it is in her best interests that she is

able to be independent, especially given the serious health issues I have from

VEDS.

Well, I don't know if any of this info helps your situation. EDS is not an

easy health issue to have to deal with and the ignorance of the health

professions make it so much more difficult. If the therapists providing your

daughter's physical therapy will not listen and take all of her health issues

into

consideration, you should try another place. Especially, with POTS/OI

issue.....you wouldn't want her to pass out and get injured due to ignorance at

therapy.

You take care. I am keeping you both in my thoughts and prayers.

Hugs,

Sue