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Since you are talking about CMT and heredity, I thought I would chime in. I

was diagnosed two years ago at the age of 41. I am now on full disability, I

had a career in banking until the CMT interfered with my being able to

perform my duties as a Florida division head of a large California bank.

In attempting to trace the CMT back through my family to see how it was

inherited, I came across something that was very interesting. I inherited

the disease from my father. His mother (my grandmother) had it, and from

family pictures, I was able to see it in my great grandfather.

The interesting aspect of this is, in trying to go back beyond my great

grandfather through genealogy searches, mainly using records that I

researched through the Mormon Church in Salt Lake City (I'm not Mormon, but

from my research they had the most accesable and accurate records I could

find), I discovered that the family name in which I was tracing to follow

the CMT trail had no port of entry into the United States. Thus, I have

ancestors who were native Americans.

As I have been the numerous medical schools that are researching CMT

(University of Miami, University of Utah, Hopkins, University of

Washington), this was the first information they received from a family who

had not traced the CMT back to ancestors from other countries.

This aberration has drawn quite a response from the CMT research folks. I

am constantly being invited to the various schools to provide them with

further information about my family and their roots.

Anyway, since the topic had turned to how and were we all got this, I thought

a few of my you might be interested in this different view of our common

interest. Although I have been on the list for about a year and had not

written before, I have learned so much from all the posts.

Many thanks to Gretchen for her hard work and ambition to start and manage

this informative site.

Monte

In a message dated 1/18/01 11:17:02 PM Eastern Standard Time,

egroups writes:

>

> To Lamar, Michele here, I don't know if this coincidence or what, But my

> grandfather, whom had CMT, came from Ireland too. His last name was

> Stanley.

> I can tell you that his mother, whom also had CMT came from Sweden to

> Ireland

> to the USA, but has family that originated in Ireland, whether any of them

> had CMT, I don't know. I do know some of her family died of what they

> thought, at the time, was infantile polio. I only know her maiden name was

> Jensen, but I don't know what the relatives names were. I'll try to find

> out

> more, but since very few of that side of the family are still alive, and

> the

> information I can get is sketchy in the least, I'm not sure if I can find

> any

> more information.

>

>

>

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Guest guest

My school situation is just the opposite. Around february, I send a letter

to the school stating that I feel some testing needs to be done before the

next IEP meeting and here are the tests I would like performed. I've made

lots of friends with that strategy, as you can imagine! ;-)

But at least my concerns are addressed. The school always has asked for my

permission to test (even when I requested the testing!!??!!), but you are

right, it's a procedural error to test without permission. But that doesn't

mean you get to ask for the moon and the school must provide for your son

everything you ask for. You know, I want to answer your questions, but

right now, I don't have the time to do the research (IEP meeting on

Thursday). If I were you, I would go to www.wrightslaw.com and on the left

hand column look for MFE. That would be a good place to start. Chris

>

>While it may give you some leverage, they also may be currently doing the

>testing that you do not want them to do! So after it's done, it's done.

>How

>do you guess they are doing an MFE this time? If you have reasons that

>are

>sure, I would write a letter to dir. of sped services and state that an

>MFE is

>being conducted without your input and concent. This documents the

>problem

>so you can use it later but also halts the process as they hopefully rush

>to

>include you in the process. They really are obligated to sit down with

>you

>and go over what testing they plan to do with your input. My school will

>skip

>that part as well and I have to insert myself with a letter telling them

>they

>will not do testing until I see a list of all testing they plan to do.

>Then

>I can decide if those tests are adequate or if they should add more.

>

>

>Roxanna ô¿ô

>Don't take life too seriously; No one gets out alive.

>

>

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- My in-laws live in Brook Park, so yes, I'd be willing to drop in.

I can give you info on what worked for my son and what didn't, etc, but

I'm afraid I wouldn't be much help on where to get the funds for it. Chris

Message 14

> From: " If you want to know.. Ask! " mystique2574@...

> Date: Tue May 23, 2006 7:22am(PDT)

>Subject: Questions..

>

>I have seen a lot of differnt figures flying around lately and am

>wondering.. how you all do it??

>

>Just before we started the process of buying a new home.. our son's

>testing, misdiagnosis and diagnosis drained our savings. We are

>renting a home at this time.. and barely making it paycheck to

>paycheck. Many weeks we are robbing peter to pay paul so to speak.

>I have been a stay at home mom since my daughter was born since she

>was a preemie and could not be put in daycare the first year of her

>life.. I attempted to go back to work a few times now.. losing my

>last 2 jobs to either caregivers that called to frequently for me to

>come get my son because they couldn't handle him or me calling off

>because I either did not have a caregiver or my son had therapy or

>doctor's appointments that required me to be there.

>

>My son was first diagnosed as being hearing impaired in both ears..

>which I knew couldn't be the case since he could be upstairs and we

>could have the tv on the lowest volume but if Dora or came on

>and the theme song was playing he'd come running. We got a second

>opinion and soon followed up with a neurologist who gave us the

>diagnosis of ASD w/ADD. We were with the help me grow program but

>most of the help was geared towards the hearing impairment and we

>got the new diagnosis just 3 months before he got transferred out of

>help me grow and into the school district.. so everything we have

>done has pretty much been trial and error on my part. My son

>currently takes risperdal 2 mg a day.. and sees speech and

>occupational therapists as well as a child psychologist. He attends

>2 preschools, our school districts as well as a private one in

>Middleburg Hts that we pay for because we weren't sure how the

>transition into the school district would be and he was already

>comfortable at MEEC.

>

>I've heard alot about ABA, Bio-medical, gfcf diets, supplements and

>tons of other things that I'm not familiar with and am not sure if

>we should try with my son. We did try the gfcf thing and he refused

>to eat any of the new foods whatsoever not to mention it was killing

>my entire food budget for 4 in just one trip to get his groceries.

>I have thought about taking him to Osteomed or Dr Demio.. but the

>fact that I know up front our Insurance won't pay a cent and we

>don't have the extra to put out for it is the main reason that we

>haven't done so.

>

>Anyone care to share, and please don't take this the wrong way, but

>in layman's terms, their experiences and how they handle it all

>financially?

>

>Also, I know that there are monthly meetings for ASGC, but I am

>unable to attend any of those since they are on Wednesday's before

>my husband gets home from work and we wouldn't be able to get a

>sitter to attend anyway. I am able to get a sitter on the weekend

>and have a place to meet in Brook Park that would not cost a thing

>to anyone. Would anyone be interested in meeting on say a Sunday

>afternoon for group discussions? I'll even provide the coffee! LOL

>

>I've also posted pictures of my kids in the photos section, what a

>great idea! (Btw.. Shane your son is absolutely precious!!)

>

>Thanks in advance.. and hope that no one minds me making this

>post..Sorry it ended up being so long!! Guess when I start rambling

>it is hard to get me to shut up.. LOL.. ok.. shutting up now!

>

>Hope everyone has a great day and gets to enjoy the sunshine!

>

> J

>Olmsted Falls

>Proud Mom of igh, 5 and Kiernan 4

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I live in Brook Park where would you like to meet that sounds great . The Marotta Family <marottafamily@...> wrote: - My in-laws live in Brook Park, so yes, I'd be willing to drop in. I can give you info on what worked for my son and what didn't, etc, but I'm afraid I wouldn't be much help on where to get the funds for it. ChrisMessage 14> From: "If you want to know.. Ask!" mystique2574@...> Date: Tue May 23, 2006 7:22am(PDT)>Subject: Questions..>>I have seen a lot of differnt figures flying around lately and am>wondering.. how you all do it??>>Just before we started the process of buying a new home.. our son's>testing, misdiagnosis and diagnosis

drained our savings. We are>renting a home at this time.. and barely making it paycheck to>paycheck. Many weeks we are robbing peter to pay paul so to speak.>I have been a stay at home mom since my daughter was born since she>was a preemie and could not be put in daycare the first year of her>life.. I attempted to go back to work a few times now.. losing my>last 2 jobs to either caregivers that called to frequently for me to>come get my son because they couldn't handle him or me calling off>because I either did not have a caregiver or my son had therapy or>doctor's appointments that required me to be there.>>My son was first diagnosed as being hearing impaired in both ears..>which I knew couldn't be the case since he could be upstairs and we>could have the tv on the lowest volume but if Dora or came on>and the theme song was playing he'd come running.

We got a second>opinion and soon followed up with a neurologist who gave us the>diagnosis of ASD w/ADD. We were with the help me grow program but>most of the help was geared towards the hearing impairment and we>got the new diagnosis just 3 months before he got transferred out of>help me grow and into the school district.. so everything we have>done has pretty much been trial and error on my part. My son>currently takes risperdal 2 mg a day.. and sees speech and>occupational therapists as well as a child psychologist. He attends>2 preschools, our school districts as well as a private one in>Middleburg Hts that we pay for because we weren't sure how the>transition into the school district would be and he was already>comfortable at MEEC.>>I've heard alot about ABA, Bio-medical, gfcf diets, supplements and>tons of other things that I'm

not familiar with and am not sure if>we should try with my son. We did try the gfcf thing and he refused>to eat any of the new foods whatsoever not to mention it was killing>my entire food budget for 4 in just one trip to get his groceries.>I have thought about taking him to Osteomed or Dr Demio.. but the>fact that I know up front our Insurance won't pay a cent and we>don't have the extra to put out for it is the main reason that we>haven't done so.>>Anyone care to share, and please don't take this the wrong way, but>in layman's terms, their experiences and how they handle it all>financially?>>Also, I know that there are monthly meetings for ASGC, but I am>unable to attend any of those since they are on Wednesday's before>my husband gets home from work and we wouldn't be able to get a>sitter to attend anyway. I am able to get a sitter on the

weekend>and have a place to meet in Brook Park that would not cost a thing>to anyone. Would anyone be interested in meeting on say a Sunday>afternoon for group discussions? I'll even provide the coffee! LOL>>I've also posted pictures of my kids in the photos section, what a>great idea! (Btw.. Shane your son is absolutely precious!!)>>Thanks in advance.. and hope that no one minds me making this>post..Sorry it ended up being so long!! Guess when I start rambling>it is hard to get me to shut up.. LOL.. ok.. shutting up now!>>Hope everyone has a great day and gets to enjoy the sunshine!>> J>Olmsted Falls>Proud Mom of igh, 5 and Kiernan 4

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Guest guest

,

I'm a very active person at my church, Brook Park United Methodist

there on the corner of & . On top of being a member, my

husband and I are also the custodial staff and the chairpersons for

the education team.. sunday school, nursery and vacation bible

school. So after talking with out Pastor, she let me know if I

ever wanted to use the hall for any sort of meetings she would

support it fully and the church would as well. So I figure.. why

not?

J

Olmsted Falls

>

> - My in-laws live in Brook Park, so yes, I'd be willing

to drop in.

> I can give you info on what worked for my son and what didn't,

etc, but

> I'm afraid I wouldn't be much help on where to get the funds for

it. Chris

>

> Message 14

> > From: " If you want to know.. Ask! " mystique2574@...

> > Date: Tue May 23, 2006 7:22am(PDT)

> >Subject: Questions..

> >

> >I have seen a lot of differnt figures flying around lately and am

> >wondering.. how you all do it??

> >

> >Just before we started the process of buying a new home.. our

son's

> >testing, misdiagnosis and diagnosis drained our savings. We are

> >renting a home at this time.. and barely making it paycheck to

> >paycheck. Many weeks we are robbing peter to pay paul so to

speak.

> >I have been a stay at home mom since my daughter was born since

she

> >was a preemie and could not be put in daycare the first year of

her

> >life.. I attempted to go back to work a few times now.. losing my

> >last 2 jobs to either caregivers that called to frequently for me

to

> >come get my son because they couldn't handle him or me calling off

> >because I either did not have a caregiver or my son had therapy or

> >doctor's appointments that required me to be there.

> >

> >My son was first diagnosed as being hearing impaired in both

ears..

> >which I knew couldn't be the case since he could be upstairs and

we

> >could have the tv on the lowest volume but if Dora or came

on

> >and the theme song was playing he'd come running. We got a second

> >opinion and soon followed up with a neurologist who gave us the

> >diagnosis of ASD w/ADD. We were with the help me grow program

but

> >most of the help was geared towards the hearing impairment and we

> >got the new diagnosis just 3 months before he got transferred out

of

> >help me grow and into the school district.. so everything we have

> >done has pretty much been trial and error on my part. My son

> >currently takes risperdal 2 mg a day.. and sees speech and

> >occupational therapists as well as a child psychologist. He

attends

> >2 preschools, our school districts as well as a private one in

> >Middleburg Hts that we pay for because we weren't sure how the

> >transition into the school district would be and he was already

> >comfortable at MEEC.

> >

> >I've heard alot about ABA, Bio-medical, gfcf diets, supplements

and

> >tons of other things that I'm not familiar with and am not sure if

> >we should try with my son. We did try the gfcf thing and he

refused

> >to eat any of the new foods whatsoever not to mention it was

killing

> >my entire food budget for 4 in just one trip to get his groceries.

> >I have thought about taking him to Osteomed or Dr Demio.. but the

> >fact that I know up front our Insurance won't pay a cent and we

> >don't have the extra to put out for it is the main reason that we

> >haven't done so.

> >

> >Anyone care to share, and please don't take this the wrong way,

but

> >in layman's terms, their experiences and how they handle it all

> >financially?

> >

> >Also, I know that there are monthly meetings for ASGC, but I am

> >unable to attend any of those since they are on Wednesday's before

> >my husband gets home from work and we wouldn't be able to get a

> >sitter to attend anyway. I am able to get a sitter on the

weekend

> >and have a place to meet in Brook Park that would not cost a thing

> >to anyone. Would anyone be interested in meeting on say a Sunday

> >afternoon for group discussions? I'll even provide the coffee!

LOL

> >

> >I've also posted pictures of my kids in the photos section, what a

> >great idea! (Btw.. Shane your son is absolutely precious!!)

> >

> >Thanks in advance.. and hope that no one minds me making this

> >post..Sorry it ended up being so long!! Guess when I start

rambling

> >it is hard to get me to shut up.. LOL.. ok.. shutting up now!

> >

> >Hope everyone has a great day and gets to enjoy the sunshine!

> >

> > J

> >Olmsted Falls

> >Proud Mom of igh, 5 and Kiernan 4

>

>

>

>

> *note:

> When Adding to your email address book, don't forget to

include the s in groups. Here is the complete address:

> ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~

> is a networking and support group

> of " Parent to Parent for Autism " .

> Website: http://hometown.aol.com/parentschat/homepage.html

>

>

>

>

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I know that church it is within walking distance of my house. So let me know when you want to get together and we can try to work it out. "If you want to know.. Ask!" <mystique2574@...> wrote: ,I'm a very active person at my church, Brook Park United Methodist there on the corner of & . On top of being a member, my husband and I are also the custodial staff and the chairpersons for the education team.. sunday school, nursery and vacation bible school. So after talking with out Pastor, she let me know if I ever wanted to use the hall for any sort of meetings she would support it fully and the church would as well. So I figure.. why not? JOlmsted Falls > > - My in-laws live in Brook Park, so yes, I'd be willing to drop in. > I can give you info on what worked for my son and what didn't, etc, but > I'm afraid I wouldn't be much help on where to get the funds for it. Chris> > Message 14> > From: "If you want to know.. Ask!" mystique2574@...> > Date: Tue May 23, 2006 7:22am(PDT)> >Subject: Questions..> >> >I have seen a lot of differnt figures flying around lately and am> >wondering.. how you all do it??> >> >Just before we started the process

of buying a new home.. our son's> >testing, misdiagnosis and diagnosis drained our savings. We are> >renting a home at this time.. and barely making it paycheck to> >paycheck. Many weeks we are robbing peter to pay paul so to speak.> >I have been a stay at home mom since my daughter was born since she> >was a preemie and could not be put in daycare the first year of her> >life.. I attempted to go back to work a few times now.. losing my> >last 2 jobs to either caregivers that called to frequently for me to> >come get my son because they couldn't handle him or me calling off> >because I either did not have a caregiver or my son had therapy or> >doctor's appointments that required me to be there.> >> >My son was first diagnosed as being hearing impaired in both ears..> >which I knew couldn't be the case since he

could be upstairs and we> >could have the tv on the lowest volume but if Dora or came on> >and the theme song was playing he'd come running. We got a second> >opinion and soon followed up with a neurologist who gave us the> >diagnosis of ASD w/ADD. We were with the help me grow program but> >most of the help was geared towards the hearing impairment and we> >got the new diagnosis just 3 months before he got transferred out of> >help me grow and into the school district.. so everything we have> >done has pretty much been trial and error on my part. My son> >currently takes risperdal 2 mg a day.. and sees speech and> >occupational therapists as well as a child psychologist. He attends> >2 preschools, our school districts as well as a private one in> >Middleburg Hts that we pay for because

we weren't sure how the> >transition into the school district would be and he was already> >comfortable at MEEC.> >> >I've heard alot about ABA, Bio-medical, gfcf diets, supplements and> >tons of other things that I'm not familiar with and am not sure if> >we should try with my son. We did try the gfcf thing and he refused> >to eat any of the new foods whatsoever not to mention it was killing> >my entire food budget for 4 in just one trip to get his groceries.> >I have thought about taking him to Osteomed or Dr Demio.. but the> >fact that I know up front our Insurance won't pay a cent and we> >don't have the extra to put out for it is the main reason that we> >haven't done so.> >> >Anyone care to share, and please don't take this the wrong way, but> >in layman's terms, their experiences and how they

handle it all> >financially?> >> >Also, I know that there are monthly meetings for ASGC, but I am> >unable to attend any of those since they are on Wednesday's before> >my husband gets home from work and we wouldn't be able to get a> >sitter to attend anyway. I am able to get a sitter on the weekend> >and have a place to meet in Brook Park that would not cost a thing> >to anyone. Would anyone be interested in meeting on say a Sunday> >afternoon for group discussions? I'll even provide the coffee! LOL> >> >I've also posted pictures of my kids in the photos section, what a> >great idea! (Btw.. Shane your son is absolutely precious!!)> >> >Thanks in advance.. and hope that no one minds me making this> >post..Sorry it ended up being so long!! Guess when I start rambling> >it is

hard to get me to shut up.. LOL.. ok.. shutting up now!> >> >Hope everyone has a great day and gets to enjoy the sunshine!> >> > J> >Olmsted Falls> >Proud Mom of igh, 5 and Kiernan 4> > > > > *note:> When Adding to your email address book, don't forget to include the s in groups. Here is the complete address: > ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~> is a networking and support group> of "Parent to Parent for Autism".> Website: http://hometown.aol.com/parentschat/homepage.html > > > >

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