Introduction & Re: What's up with my son not wanting to run?

April 15, 2011

Hi Holly,

I can feel for you as a parent or as a child. I am now 48 next week and

other than Chiari was misdiagnosed all my life essentially. It was just in

November that I found Dr. F. neurosurgeon in Bethesda, MD. He knew

about my rubber band joints, my growing pains that I would wake up or come

from sports or playing and scream in pain. My parents would rub my legs and

or arms (mostly legs) and I always smelled like Ben-gay. I had problems with

my stomach also, and Migraines that now I know were from Chiari and from

Increased Intracranial pressure found at my DE tethering; it was 21 and had

30mls removed. I am currently on Diamox to help with this problem, as I am

afraid to have a shunt. I know some of my pain in my joints is the

connective tissue disorder Ehler Danlos; but the pain I endured and the loss

of stamina were hard for me to say out- loud, to anyone, when I thought

everybody suffered the same as me. I thought I was weak, or dumb and would

work harder and take longer to do things to prove to myself and to others

that I was strong and intelligent. I needed to feel like I was OK; I walked

different, suffered with Scoliosis, and could not complete any gymnastics

like others could-even in PE at school. What I did was put up a very

outgoing and self-confident front; but I think it was to compensate for

praying that " I hope no one really knows how hard and painful life is for

me, that I could not keep up with them anymore.

I wonder what your son is thinking, does he have to have music or something

with white noise to go to sleep? My daughter and son are showing signs but

have been holding out on diagnosis as they are young twenties and adults. I

know the next generation will become sicker sooner and then even sooner. I

worry for my 3 year old grandson.

I have your family in my thoughts and prayers. Let me know I can help you

any.

Description: small bird with a letter

Beth Rhoads

Decompressed Chiari; Cranial/Cervical instability with Fusion skull to C2-

12/10/10

Tethered Cord S1-S2 released 2/4/11; POTS; Ehler Danlos Syndrome

info@...

" One day at a time with God "

Description: bird items

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