Re: Digest Number 3143/ Angel

[Guest guest]

Hi Angel,

I live in Ohio outside of Cleveland when I went to the school for my than 9

year old son he had started on half days. From 5th grade on the school had a

teacher / tutor come to the house and teach him. We started with an 504 plan and

now we have a IEP /Indvidualized Education Program. I also have one for my 15

year old daughter, for them for everyday they miss school they are they are

allowed one hour of tutoring. Now for my son they required testing and a note

from his doctor, but for my daughter it was a nightmare so I found an advocate

to help me through the state and she was a big help. My son has been turtored at

home for over 3 years and will graduate in June I hope I have helped please feel

free to contact me any time best of luck I am sending you a few web sights that

I found.

Sincerely,

Donna K

www.state.ia.us/educate/ecese/cfcs/dueprocess/parentsrights.html

http://resources.sai-iowa.org/special/iowa.html (Iowa's Legal

Requirements)

---- Mito wrote:

>

>

> There are 25 messages in this issue.

>

> Topics in this digest:

>

> 1. Re: anyone with similar symptoms? to Donna H

>

> 2. Re: Sudafed, allergy meds safe with mito?

>

> 3. Re: Re: Abnormal Mitochondrial? Meagan

>

> 4. Re: Re: Abnormal Mitochondrial?

>

> 5. Re: Digest Number 3142 Anne

> From: SRJsmom572@...

> 6. Re: Digest Number 3142, Kim

> From: SRJsmom572@...

> 7. Re: Re: Abnormal Mitochondrial? Meagan

>

> 8. Re: stuttering question

>

> 9. Re: shaking

>

> 10. home school

>

> 11. Re: Sudafed, allergy meds safe with mito?

>

> 12. Re: Panic,panic,panic

>

> 13. Re: Digest Number 3141, Sharon

>

> 14. Re: Subject: Re: pacemaking-DARLA

>

> 15. menkes disease ASAP please???

>

> 16. Need Info - LONG

>

> 17. Re: Panic,panic,panic

>

> 18. Re: Need Info - LONG

> From: VisibleWorship@...

> 19. Re: Digest Number 3140, need copy of letter fo rmito please

> From: SRJsmom572@...

> 20. Re: Digest Number 3140, cooling vest

> From: SRJsmom572@...

> 21. Re: Digest Number 3140

> From: SRJsmom572@...

> 22. Re: Digest Number 3140, ?Heidi thanks

> From: SRJsmom572@...

> 23. Re: Digest Number 3138, holly rubio

> From: SRJsmom572@...

> 24. Fw: An article from " Family Voices " about Seizure Detection Video

System

>

> 25. Re: Need Info - LONG Deb

>

>

>

> ________________________________________________________________________

> ________________________________________________________________________

>

> Message: 1

> Date: Thu, 21 Apr 2005 18:47:41 -0000

>

> Subject: Re: anyone with similar symptoms? to Donna H

>

>

> Hey Donna,

> I live in Grand Rapids and my daughters see Dr ODonnell too!

> If you want to talk, let me know.

>

> > >

> > > I can't talk much with family about the symptoms I

> > > have been having

> > > (or ones my younger son experiences who is not

> > > diagnosed with mito)

> > > because they obviously think I am reading too much

> > > into things. Only

> > > here will others understand why my concerns may be

> > > justified. I

> > > would like to know if other adults experience any of

> > > these symptoms

> > > or have a similar family history.

> > >

> > > My son is Craig, and he is 8 with unspecified mito

> > > by way of muscle

> > > biopsy. No evidence of problems with the complexes.

> > > He was never

> > > tested for maternal DNA deletions. I am not sure

> > > why at this point,

> > > but he saw Dr. Cohen who must not have felt it was

> > > warranted. (This

> > > is a question for his appt. with neurologist next

> > > week.)

> > >

> > > My 6 year old, Dalton, has had some abnormal test

> > > results, but not

> > > enough to diagnose anything. He had extreme fatigue

> > > that has been

> > > virtually elimated by Carnitor. We give him CoQ10

> > > also. He has

> > > become progressively more hyperactive in the past

> > > year or so. (a

> > > major symptom for Craig). He has a lot of trouble

> > > overheating and

> > > has had some brief, seizure-type episodes before

> > > starting Carnitor.

> > > (Craig has seizures). Also, pain in hands, legs,

> > > wrists, etc. before

> > > Carnitor too. He seems to have memory problems. He

> > > doesn't

> > > remember things we just said or did. (Craig has

> > > significant

> > > problems with some kinds of memory- ie. " Where are

> > > we going again

> > > Mom? " over and over, etc.)

> > >

> > > I will soon be 40 years old. I have been having a

> > > problem with very

> > > stiff legs at times. It makes it difficult to walk

> > > normally. I have

> > > also had trouble with my muscles tightening while

> > > laying in bed at

> > > night, and it's difficult to get them to " let go. "

> > > I have had

> > > trouble walking straight in the middle of the night

> > > a few times .

> > > One time I tried my darndest to get to the door to

> > > go out of the

> > > room, but could not do it without falling over. I

> > > finally gave up

> > > and went back to bed. All these things come and go.

> > >

> > > Lately, my back quite often has pins and needles

> > > across the mid to

> > > upper section. (Perhaps this could be a chiropractic

> > > problem?) I get

> > > pins and needles in my hands and feet/legs quite a

> > > bit as well.

> > >

> > > The things that bothers me most, though, is that my

> > > thinking is

> > > clearly not normal lately. ( Between me and the boys

> > > it's beginning

> > > to feel like a nut house around here!) I can't

> > > remember something I

> > > just did or recently said. Past events can be

> > > difficult as well. I

> > > just introduced myself to another mother at school

> > > today who claims

> > > to have met me and talked with me several times in

> > > the past! These

> > > kinds of things are happening quite frequently. I

> > > also CANNOT stay

> > > focused on what I am doing. I switch tasks

> > > constantly and forget

> > > that I was doing something else until I find

> > > something cooking on

> > > the stove or the dryer open waiting for clothes from

> > > the washer,etc.

> > > Our family has been under an extreme amount of

> > > stress for so long

> > > (family tragedies, Craig's progressive problems,

> > > rebellious

> > > teenager, on and on!) that I try to assume that is

> > > the problem. My

> > > memory does get better when things are going better.

> > >

> > > One more minor symptom I have is the need to urinate

> > > quite

> > > frequently without any evidence of infection. This

> > > also gets better

> > > when not under as much stress.

> > >

> > > Sorry to be so long and detailed, but I wanted to be

> > > specific enough

> > > to get some input if possible.

> > >

> > > If I should see a doctor I have no idea who to see,

> > > and I wonder if

> > > things are really bad enough to go yet. We live in

> > > Michigan.

> > >

> > > THANKS!!

> > >

> > > Donna H.

> > >

> > >

> > >

> > >

> >

> > __________________________________________________

> >