RE: For S. Ginley - Arrhythmia Qestion or anyone with POTS and orthostati...

[Guest guest]

Hi Sue:

Wow, our daughters are really very much alike. Meaghan has strated to

have petichiae as well as small bruises that take forever to go away but

her paediatrician just prefers to ignore this, just doing basic CBC.

What VEDS issues do you see that Ginny has that are different from

HEDS....Does she bruise much or get petichiae at all. Do they check for

aneurisms or just wait for the inevitable to happen. Does Ginny have

Marfan features. Does she have MVP and if so what symptoms or problems

does that engender.

We just are not going to mobilize Canadian doctors re EDS. I am

wondering if here in Canada these patients are viewed as a total waste

of time, too heavy a financial drain on the medical system and

disability support system when it is unlikely they will be taxpayers to

support our politicians.

I find it astounding that in modern medicine EDS is such a wasteland as

far as clearly defining or clarifying the types and obtaining a

diagnosis with any ease. Why not just call it all one type when the

problems are so very similar .I am not aware that my dtr. ever has any

high BP as I have never recorded it above 120/58 during the day, even

when midodrine is at it's strongest.

Perhaps it goes high at night during these hot sweats and severe dizzy

episodes she frequently has. She goes to bed always very cold with

socks and even a hot water bottle and then seems to get overheated and

sweaty during the night. Does this ever happen to Ginny. I am going to

do some nighttime BP checks, particularly if sweaty, even if it does

disturb her sleep.

Once, only once when she had one of these night time spinning dizzy

episodes with severe nausea I was able to get it at 140/68. Most times

she is so distraught and agitated by the severe nausea she can't bear to

even be touched, but I was able to take it towards the end of one such

episode. She is so hypersensitive during an episode that the feel of

the inflating cuff is unbearable. Also this automatic B.P. cuff just

will not register any number if she is not absolutely still or it is in

the midst of change, probably a heart rate variation it can't record.

The arrhythmia seems to have stopped occurring at the present time, at

least she is no longer feeling it in her ears so I will hold off on the

Holter. It only records heart rate any way and Dr. Musewe would not

even see us to discuss the Echo and Holter Monitor results. There is a

constant wall that we come up against.

Meaghan gets no physio therapy..another wall we ran in to. They cannot

grasp that with her Learning Disability, exhaustion after school and

immaturity she is not independent re doing physio. Perhaps active

physio would just initiate more of those small bruises or perhaps there

is no particular benefit over the long term. I have not found physios

in Canada to have any knowledge or recognition of lax ligaments and the

life changing results.

Regards, Bernie

Re: Arrhythmia Qestion for smginley or anyone with POTS

and orthostati...

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

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca

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