Re: Digest Number 670 mestinon

[Guest guest]

Hi ,,

I am just getting to some old mail and wanted to respond to the mestinon

questions..When Matty was first diagnosed they were grasping at straws

hoping it was myasthenia gravis. They did a few mestinon trials in the

hospital while diagnosing him but they did nothing...however, they sent us

home just in case there was a hope of this and his dose was too high...He

went into mestinon crises as they called it and the next morning couldn't

uncurl even to stand in the crib...He was in pain... cramping and probably

distress of some sort...We stopped giving it immediately and after about

24 - 48 hours he was fine again..

Hope this helps,

( Matty's Mom)

Re: school time blues

>>

>> Vange,I don't know about the state you live in,but in Ky. all special

>> needs kids have an IEP (Individual Education Program).This program is

>> written at an ARC (Addmission and Release Committee) meeting.Anyone who

>> will provide any service to the child, teachers ,therapist,etc. attend

>> this metting and work out a plan that suits the child.In 's case

the

>> Director of Special Ed. also attends.Anything written (or agreed on) at

>> this metting is the minimum the school is required to provide. I always

>> take someone to take notes (since not everything agreed on always gets

>> written down) and I also take a tape recorder.This makes it part of the

>> IEP whether it's written or not. ALL states must follow

DEA,( Individuals

>> with Disabilities Act) or loose Federal funding. If you do not have a

copy

>> of this act,you can contact NICHCY, P.O. Box 1492, Washington,DC 20013.

>> Their phone # is . You can also contact your state Dept. of

>> Special Ed. If none of this works contact Protection and Advocacy. Talk

to

>> other parents.ALL children are guaranteed a " FREE, APPROPRIATE, PUBLIC

>> EDUCATION " in the LEAST RESTRICTIVE APPROPRIATE EDUCATIONAL

PLACEMENT.THAT

>> IS THE LAW. Get ready now, it will be a fight as long as you have

children

>> who have special needs.Don't back down and don't be intimidated, remember

>> YOU pay these peoples salary. Sorry this is so long but I know what it's

>> like and if you don't stand up for your child no one will. If I can help

>> please contact me privately.I will be glad to help in any way I can.

>> Ray, Mom to

>> Re: surgury risks/new issues

>

>I am sorry for all the difficulties you are experiencing. I imagine it is

>very frustrating. I wish things did not have to be so hard for people to

>get the coordinated and comprehensive care that they need. Hang in there.

>

>Anne

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>At 06:26 PM 09/03/2000 -0700, you wrote:

>

>

>>I am glad you had such good experiences and I am not being rude.

>>Twice I had back surgery and twice they did not do this. It is something

>>that everyone needs to put on a check list. Depending on this being done

is

>>not always going to work because there are specialists who will send a

>>letter to primary care doctor and say thanks for the patient goodbye and

>>leave them out of everything. When I was do preadmitting for the first

>>back surgery I asked them if it was on the orders. She said. " NO " . So I

>>asked that they call my primary care doctor at the time to get the orders.

>>I was told that my specialist had demands that precluded any other doctor

>>writing orders for his patients. Twice I went through major withdrawals

>>after back surgery. I know many will say I am one case. This is not

true,

>>I was one of many of this man's patients he did the same thing to. When a

>>specialist gives an order that no other doctor can give orders except the

>>anesticist during surgery and not after then one has no recourse. The

>>nurses won't listen, no one will.

>

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