Arrhythmia Qestion for smginley or anyone with POTS and orthostatic Intolerance - Long

[Guest guest]

I believe your daughter Ginny also has HEDS, knee problems, LD, POTS,

and OI. Does she also have Marfanoid habitus or is she diagnosed HEDS

only?

My 17yr old with HEDS and Marfans overlay has been having episodes of

arrhythmia, like lasting on and off over 3 hours, mostly on, or during

the night . It seems to be triggered by having her period, on her

second day of menstruation but am as yet not absolutely certain re this

trigger. Will see what happens next month. This suggests to me it is

due to loss of sodium or potassium or calcium imbalance, or loss of red

cells ( has borderline low hemoglobin which we have not been able to

raise). Of course both times I took her to Emerg. the arrhythmia

stopped, once on the way in the car and the second time after walking

from the parking lot to the Emerg., quite a distance. She has no pain,

but feels the arrhythmia drumming in her ears which she finds very

annoying particularly at school, when she initially didn't know what it

was. Her arrhythmia is very very easy to feel on radial pulse. Have you

or anyone else in the group had this happen and what was the resulting

treatment or resolution? The only thing I remember from my nursing is

arrhythmias are very difficult to resolve. I have been sending her to

school as per usual and I can't say she is any more tired than usual.

What meds is your daughter on to control the POTS and OI, and did you

have to juggle them initially to find the right combo?

In a previous message you suggested providing Ginny's e-mail to Meaghan.

I hesitated re this as Meaghan is striving (rather unsuccessfully, I

might add) to maintain links with others at her school. I know that she

desperately needs to have contact with school peers, particularly

interested in boys. She was harassed, intimidated and swarmed by girls

in grade 7 and is so frightfully hypersensitive and warry of all girls.

Statements or comments that would have no impact on another girl, she

interprets as negative and she puts up her guard. Her immature interest

level also puts her at a severe disadvantage with most girls at school.

Meaghan feels exceedingly hard done by that home teaching is

unattainable in Ontario, so she is constantly frustrated when reminded

of it, especially because she is soooo wiped out that she can't think by

the end of the day. It seems to be a huge risk for her to interact with

girls. Perhaps, it has been too painful for her when she has

communicated with others who are even more isolated than she and she

contemplates her possible future. I know it frightens me when I face the

prospect of what she will yet have to endure because there is so little

acknowledgement of and interest in providing genuine support for teens

with HEDS and Marfans overlay in Ontario. When Meaghan was assessed at

the Bloorview Children's Centre by OT, Physio and Psychology and

provided them with info on OI, POTS it was as if a wall came up and

these folks totally ignored my information, as if they became deaf and

blind... a strange, strange situation to be in. If you have any ideas or

found successful supports for your daughter, please let me know.

Thanks in advance for your input. Regards, Bernie