Re: medical info needed/school can't tolerate full days

October 1, 2003

They do not get federal funding for her if she does not go all day.... Get a note from each of her doctors, and have it written into her IEP/504 that she is to attend part time, and have a "homebound" teacher due to her disease, as she is entitled to by law. Call your state advocacy office and get an advocate to go with you. If she does not have a 504 or IEP, she definitely needs one for her health issues.

Take care, Cindy

medical info needed/school can't tolerate full days

Now that is 7 the school is REALLY pressuring me to send her all day everyday. They made me cry at a staffing today. Telling me she needs to be at school all the time. I told them I was not going to jeopardize her health to learn. I told them they did not understand Mito and how the energy works and that she is exhausted by Friday. Their response was "all kids are tired on Friday" Any medical documentation would be greatly appreciated.Janelle McGuireMom to 7 with Mito and 10 with ADHDPlease contact mito-owner with any problems or questions.

October 1, 2003

I am a teacher and I agree with Cindy 100%. The problem they have

with part time is the funding. You need to have her on a 504 or

IEP. A 504 is for someone who does not qualify for an IEP. They

either do not meet the standards because of their physical or mental

abilities. Good Luck!

Geri-Anne

> They do not get federal funding for her if she does not go all

day.... Get a note from each of her doctors, and have it written

into her IEP/504 that she is to attend part time, and have

a " homebound " teacher due to her disease, as she is entitled to by

law. Call your state advocacy office and get an advocate to go with

you. If she does not have a 504 or IEP, she definitely needs one for

her health issues.

> Take care, Cindy

> medical info needed/school can't tolerate full

days

>

> Now that is 7 the school is REALLY pressuring me to

send her all day

> everyday. They made me cry at a staffing today. Telling me she

needs to be

> at school all the time. I told them I was not going to

jeopardize her health

> to learn. I told them they did not understand Mito and how the

energy works

> and that she is exhausted by Friday. Their response was " all

kids are tired on

> Friday " Any medical documentation would be greatly appreciated.

> Janelle McGuire

> Mom to 7 with Mito and 10 with ADHD

>

October 1, 2003

Janelle,

I don't know if it will help but there is an article about school

and the mito child in the fall/winter 2001 newsletter from umdf. If

you go to UMDF.org and hit library then fall/winter 2001 it is in

there. I hope this helps and best of luck. There are also many good

articles on the website that may help to explain mito better to the

teachers and anyone else concerned.

Dawn

October 2, 2003

Janelle,

It might be good to get a letter from 's doctors stating that she has Mito, and what this means, specifically in terms of her tolerating a day of school. 's Mito doctor has an informational packet for just this reason for schools. At first 's school did not understand the implications of Mito. They did not fully understand why she was so tired. The PT actually tried to push her more to walk. She was in bed for two days after that. But after receiving the packet, they seem more understanding, and ready to meet 's needs. In fact, it is written into 's IEP that she can rest any time she wants. Also, it is written in, that she can have as many mini snacks during the day, if that is warranted.

Good luck,

Sherry

Now that is 7 the school is REALLY pressuring me to send her all day

everyday. They made me cry at a staffing today. Telling me she needs to be

at school all the time. I told them I was not going to jeopardize her health

to learn. I told them they did not understand Mito and how the energy works

and that she is exhausted by Friday. Their response was "all kids are tired on

Friday" Any medical documentation would be greatly appreciated.

Janelle McGuire

Mom to 7 with Mito and 10 with ADHD

October 2, 2003

Janelle

do you see a mito doc? they usually have a form letter to send to your school. Have you considered putting her on homebound? or maybe just sending her a couple days a week and doing homebound the other days? There's always homeschooling too.

anyway...here is an excerpt I already had typed out that our mito doc Mark Korson, wrote to our school...

"Re: WellsD.OB. -07/04/96

is a six year old boy with a mitochondrial disease, a defect in energy metabolism, characterized in by significant neurodevelopmental decline in all areas, muscle fatigue and weakness, muscle cramping and autonomic dysregulation. His EEG is also abnormal though he has had no overt siezures. He becomes unusually weak with infections and has developed esotropia and ptosis. Muscle Biopsy testing revealed defects in complex I and IV of ther respiratory chain.

Mitochondrial disorders involve a variety of body systems including the brain and muscles (causing poor stamina, seizures, low muscle tone, muscle weakness, strokes): autonomic nervous system (temperature dysregulation, heart rate abnormalities, blood pressure dysregulation, poor heat tolerance, increased sweating, skin pallor and blotching; eyes (vision loss); hearing deficit; endocrine disease (diabetes mellitus, hypothyroidism, hypoparathyroidism); heart (cardiomyopathy); kidneys (renal tubular acidosis); metabolic issues (lactic acidosis). Symptoms become especially severe during ordinary infections, and often with ordinary excercise. The disease is progressive, and usually more organ dysfunction becomes more of a problem as the patient gets older.

There is no specific therapy for mitochondrial disease in that one cannot provide energy therapeutically in a direct way. Treatment focuses on vitamin and cofactor therapy, nutrition support, developmental/educational stimulation, preventioni of unneccessary infections, and monitoring for potential, treatable complications.

Mark Korson, M.D.Metabolism Service"

October 2, 2003

Janelle

do you see a mito doc? they usually have a form letter to send to your school. Have you considered putting her on homebound? or maybe just sending her a couple days a week and doing homebound the other days? There's always homeschooling too.

anyway...here is an excerpt I already had typed out that our mito doc Mark Korson, wrote to our school...

"Re: WellsD.OB. -07/04/96

is a six year old boy with a mitochondrial disease, a defect in energy metabolism, characterized in by significant neurodevelopmental decline in all areas, muscle fatigue and weakness, muscle cramping and autonomic dysregulation. His EEG is also abnormal though he has had no overt siezures. He becomes unusually weak with infections and has developed esotropia and ptosis. Muscle Biopsy testing revealed defects in complex I and IV of ther respiratory chain.

Mitochondrial disorders involve a variety of body systems including the brain and muscles (causing poor stamina, seizures, low muscle tone, muscle weakness, strokes): autonomic nervous system (temperature dysregulation, heart rate abnormalities, blood pressure dysregulation, poor heat tolerance, increased sweating, skin pallor and blotching; eyes (vision loss); hearing deficit; endocrine disease (diabetes mellitus, hypothyroidism, hypoparathyroidism); heart (cardiomyopathy); kidneys (renal tubular acidosis); metabolic issues (lactic acidosis). Symptoms become especially severe during ordinary infections, and often with ordinary excercise. The disease is progressive, and usually more organ dysfunction becomes more of a problem as the patient gets older.

There is no specific therapy for mitochondrial disease in that one cannot provide energy therapeutically in a direct way. Treatment focuses on vitamin and cofactor therapy, nutrition support, developmental/educational stimulation, preventioni of unneccessary infections, and monitoring for potential, treatable complications.

Mark Korson, M.D.Metabolism Service"

October 2, 2003

Janelle

do you see a mito doc? they usually have a form letter to send to your school. Have you considered putting her on homebound? or maybe just sending her a couple days a week and doing homebound the other days? There's always homeschooling too.

anyway...here is an excerpt I already had typed out that our mito doc Mark Korson, wrote to our school...

"Re: WellsD.OB. -07/04/96

is a six year old boy with a mitochondrial disease, a defect in energy metabolism, characterized in by significant neurodevelopmental decline in all areas, muscle fatigue and weakness, muscle cramping and autonomic dysregulation. His EEG is also abnormal though he has had no overt siezures. He becomes unusually weak with infections and has developed esotropia and ptosis. Muscle Biopsy testing revealed defects in complex I and IV of ther respiratory chain.

Mitochondrial disorders involve a variety of body systems including the brain and muscles (causing poor stamina, seizures, low muscle tone, muscle weakness, strokes): autonomic nervous system (temperature dysregulation, heart rate abnormalities, blood pressure dysregulation, poor heat tolerance, increased sweating, skin pallor and blotching; eyes (vision loss); hearing deficit; endocrine disease (diabetes mellitus, hypothyroidism, hypoparathyroidism); heart (cardiomyopathy); kidneys (renal tubular acidosis); metabolic issues (lactic acidosis). Symptoms become especially severe during ordinary infections, and often with ordinary excercise. The disease is progressive, and usually more organ dysfunction becomes more of a problem as the patient gets older.

There is no specific therapy for mitochondrial disease in that one cannot provide energy therapeutically in a direct way. Treatment focuses on vitamin and cofactor therapy, nutrition support, developmental/educational stimulation, preventioni of unneccessary infections, and monitoring for potential, treatable complications.

Mark Korson, M.D.Metabolism Service"

October 2, 2003

I do not cry at meetings. There is no empathy. They just see this as a weakness and a lunatic mother.

aint that the truth. The school are who brought andrew's decline to my attention! Then when I took them that article in the UMDF news and just asked them to simply let him use markers instead of pencils, you would have thought I asked if he could bring a gun to school. I asked them this in February...know how many papers I got home with markers? Two...and I sent four boxes of marker in that time! I found it interesting that they could point out his downfalls but weren't willing to make adjustments for him. When we got the letter from the mito dr (and also a new teacher) things went much better...that was in the fall and he quit attending school in november...we went on homebound in january b/c I kept thinking he would be able to go back but he coudln't. At first we started with two one-hour sessions a week, but then he couldn't even tolerate that...homebound was much more understanding although since liked to play sports and would use all his energy to play soccer in the house, he was shocked when he came to the door for his last session of the school year in May and had died...they don't get it but I don't think there is any right way to make them understand...I would cry b/c they failed to realize this was degenerative and terminal in andrew's case but they could have cared less!

deb

October 2, 2003

I do not cry at meetings. There is no empathy. They just see this as a weakness and a lunatic mother.

aint that the truth. The school are who brought andrew's decline to my attention! Then when I took them that article in the UMDF news and just asked them to simply let him use markers instead of pencils, you would have thought I asked if he could bring a gun to school. I asked them this in February...know how many papers I got home with markers? Two...and I sent four boxes of marker in that time! I found it interesting that they could point out his downfalls but weren't willing to make adjustments for him. When we got the letter from the mito dr (and also a new teacher) things went much better...that was in the fall and he quit attending school in november...we went on homebound in january b/c I kept thinking he would be able to go back but he coudln't. At first we started with two one-hour sessions a week, but then he couldn't even tolerate that...homebound was much more understanding although since liked to play sports and would use all his energy to play soccer in the house, he was shocked when he came to the door for his last session of the school year in May and had died...they don't get it but I don't think there is any right way to make them understand...I would cry b/c they failed to realize this was degenerative and terminal in andrew's case but they could have cared less!

deb

October 2, 2003

I do not cry at meetings. There is no empathy. They just see this as a weakness and a lunatic mother.

aint that the truth. The school are who brought andrew's decline to my attention! Then when I took them that article in the UMDF news and just asked them to simply let him use markers instead of pencils, you would have thought I asked if he could bring a gun to school. I asked them this in February...know how many papers I got home with markers? Two...and I sent four boxes of marker in that time! I found it interesting that they could point out his downfalls but weren't willing to make adjustments for him. When we got the letter from the mito dr (and also a new teacher) things went much better...that was in the fall and he quit attending school in november...we went on homebound in january b/c I kept thinking he would be able to go back but he coudln't. At first we started with two one-hour sessions a week, but then he couldn't even tolerate that...homebound was much more understanding although since liked to play sports and would use all his energy to play soccer in the house, he was shocked when he came to the door for his last session of the school year in May and had died...they don't get it but I don't think there is any right way to make them understand...I would cry b/c they failed to realize this was degenerative and terminal in andrew's case but they could have cared less!

deb

October 2, 2003

Good Morning Janelle,

To not let the school bully you into something that is going to be harmful for . Even with all of J.D.'s medical documentation, the dr's letters and the dr attending the IEP meeting, the school "professionals" said that J.D. needed to be at school all day. I would love for him to be at school all day and he would love to have the energy to be at school all day.

At 6, J.D. would be totally fatigued and be sick most of the weekend. He would get every illness going around school. Around age 7/8, he would barely make it to a Thursday. Around age 9/10, maybe Tuesday or Wednesday. Around age 11 to 13, not a full day and now he can barely, sometimes, make an hour.

The attitude is the same with uneducated mito people, "we all get tired." Yea, we all get tired, but we can rebuild our energy.

If the school is worried about the funding, if you hire an attorney, they will have to spend money on the district's attorney.

Before I go into a meeting, I drink about 4 oz. of wine to calm my nerves. It is better than taking drugs. Horseley calls this my "juice." I do not cry at meetings. There is no empathy. They just see this as a weakness and a lunatic mother.

I found the more I tried to explain mito since it has such bizarre presentations, the less they listened.

Get you dr to put attending partial days according to her energy level. When the school tries to tell you otherwise, just tell them that are not an option. Sometimes I would let J.D. rest in the mornings and take him in late or I would just go sign him out. Go see at lunch and get your cue to sign her out early.

When your doctor does put this in writing, make a copy for the school and another copy for them to sign stating they received a copy even if the dr mails the letter to the school and/or district. When we have our big meeting with the attorney, the school denied getting letters from the dr.

The teachers do not have the initials M.D. behind their name but the parents do - M - Mom and D - Dad.

Good luck.

Darlene

October 2, 2003