RE: Re: Introducing Myself, re Hypermobile EDS, OI, POTS, ADHD, LD

[Guest guest]

Hi Lana: The ADHD, actually its ADD is not really the problem, though

the LD is difficult for her at school. The major problems as I saw it

were the physical problems especially the toe walking that I could not

get the doctors to acknowledge the difficulties caused for her and all

the motor problems that I see are caused by lax joints. I have read

tons on ADD and know it well. The memory difficulties (brain fog) cause

a lot of difficulty for her. Marit takes Dexedrine (longacting) on

school days and since it is a stimulant as well as a vasoconstrictor she

is able to endure a shortened school day, but comes home totally,

totally wiped and has to rest with her feet up. Since figuring out

that she has OI and Pots and reading and educating myself on

dysautonomia I have implemented many coping strategies that help hugely.

A big one that helped greatly was avoiding standing for buses and

avoiding very cold temperatures. I drive her to school. Being out in

the cold..or particularly hot weather causes almost immediate OI and

exhaustion. The web sites provided excellent info plus fludrocortisone

0.1mg daily has also helped greatly. It is a story in itself how I

managed to get that ordered when SICK KIDS HOSP cardiologist would not

diagnose OI or even acknowledge it. I just did not find the behavioral

stuff on ADD helpful at all as Marit is not a behavioral problem. She

is a great girl with a huge amt of empathy. I thank you for your

interest and taking the time to pass on info.

Kindest regards,

Bernie, Toronto, Can. OI, POTS,HEDS

Re: Introducing Myself, re Hypermobile EDS, OI, POTS,

ADHD, LD

> Lana: Thanks for the info. I will read the sites.

> Bernie, Toronto, Canada, HEDS, OI, POTS

You're very welcome, Bernie, I hope there's some info there that will

be useful to you! I did tell Sis about you, and she will probably

email you when she gets back. Also, I think did tell you that

she has POTS also, so she would be a great reference for you as well!

As far as ADHD goes, do you have specific questions regarding that??

I work at Girls and Boys Town and we have books for ADHD - are you

referring to adult or child?? We have lots of books that may help

with ADHD & LD for children of all ages. If it IS for a child, and

you are interested, I can get specific titles for you, or you could

go to https://www.girlsandboystown.org/store/search.asp and type in

ADHD in the search box and it will show you what we have for ADHD. If

you have more specific questions, you can call me at work at 800-282-

6657 and ask for Lana. Don't order from the website, if you're

interested in anything, I will order it for you with my 15% discount,

OK? Just let me know! I could order it and have it sent directly to

you in a matter of minutes.

Love Lana

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