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[Guest guest]

Hi All,

My youngest child, Destiny, has RSS. When she was first diagnosed at

a year she was 21in and 11and1/2 lbs. I was posting here almost daily

with questions and this group helped me enormously get through the

process of learning to deal with her particular issues. As time went

on it became clear that she was on the milder end of the spectrum and

RSS faded into the background of our lives.

Although I read everything, I rarely post anymore. Destiny will be 5

in feb, and at 39in and 34lbs is doing very well. Not having had to

face the challenges many of you have, I feel I have little to offer

of value.

Recently something new has come up. Destiny is very involved in

Taekwondo, she loves tournaments, especially sparring and weapons.I

noticed that often doing her form she would only kick with her right

leg. She said her left " didn't want to work " and when I rubbed her

legs every night the left seemed severely hypertonic, often freezing

with the toes pointing toward the shin. I am a massage therapist and

I had not encountered this before, but i thought it might be because

of her mild assymetry and her heavy (4 days a week) Taekwondo

schedule.

Her pediatrician however said clonus. All I know is that it is an

indication of neurological damage to the motor neuron in the spinal

column and when I looked on line I found it mostly on sites about

multiple sclerosis.

This is scaring me badly. Of course there will be more comprehensive

tests as soon as I find insurance I can afford. I'm a self employed

single mom and although I recently started recieving a monthly

payment from the settlement over Destiny's father's death that most

likely makes us too rich for medicaid, I'm still just getting by.

So I'm hoping somebody knows more about this than I do right now

because I'm really afraid that Destiny is going to end up in a

wheelchair and it's breaking my heart, I know that's probably

irrational but I also know if there is anybody who can understand how

I feel right now, it's you guys.

Anyway, thanks for letting me vent and if you want to see my pint-

size pugilist I posted some pictures in the photos section under

Destiny S.

, Mom to Fawn 27,(a mom herself) Josh 21(in Iraq with the

101st), 15 (the Artist) and Destiny RSS, (5-in-a-minute)

[Guest guest]

Hi, have u ever heard of FAMIS, or something similar? Our state

(virginia) has a PAID medicaid program!! You pay a small premium to

BUY-IN to medicaid. It is a great program for single parents and

parents who just barely make too much money for regular medicaid. My

worker told me almost all states have some sort of this program.

Call your local social services department to find out more. My

roomate/best friend makes too much for medicaid and his child can

qualify for FAMIS but at like 75 bucks a month, it is not bad, and

that is at the high end of the spectrum. he is an independent

contractor for a courier company and makes a lot of monty, but they

go by you tax return, adn take out most of the expenses you incurr

before taxes (ie:gas, traveltime, milege...) I hope this helps you.

Paige