Re: Children with CMT symptoms and schools

[Guest guest]

Hi Kirk!

When my son was 4 1/2 he was scheduled for heel cord extension surgery due to

habitual toe-walking. He was enrolled in our parish

elementary/middle school and did fine for about a year or so until he started

toe walking again. More doctors, more tests and finally the diagnosis. The

school did well with his issues with PE classes and such. However, as his

disease progressed, the school became less and less willing to make

accommodations for his fine motor skill issues.

They constantly ragged him for poor handwriting and sloppy work. At

one point, he had fallen and broken his elbow. He was already having trouble

zipping his uniform pants - with one arm it was virtually impossible. The

principal would not allow him to wear elastic wastebanded pants because other

kids with broken arms didn't have any problem with zippers, and a 5th grade boy

is not going to ask his teacher for help in that department. Go

figure....that's when we pulled him out and put him into public school.

The accommodations are more readily available - although you still need to fight

sometimes for things your child needs.

In my opinion, and experience, it is much better to just lay it all out from the

start ...then seek the environment best suited to help your child.

Without being nosey, why hasn't your daughter been tested yet?

I would like to hear how you decide to handle this and what the results

are....we all learn so much from eachother.

[Guest guest]

We have not yet told daycare. Our son is 16 months and has Type 1 A

verified through genetic testing while I was pregnant. I, too, have 1A. He

does not walk yet; he cruises, pulls up, climbs on everything, and stands solo,

so we think he will walk soon. I have thought about telling them because I want

to try and model acceptance and de-stigmatization of CMT in my son's lifetime.

My hope is that if we can talk about it like any other health or developmental

concern, it will be treated with the appropriate amount of respect and

attention, but not overly focused on. In writing this, it convinces me all the

more to openly talk about it!

[Guest guest]

We have a staff member with mild CMT that doesn't understand why Adam has severe

CMT. She suggested several times that he didn't exercise enough.

The joys of CMT.

[Guest guest]

I have had this happen too. I had to shut the school nurse up fast. She had this

stuff printed out about CMT and exercising. She wanted him to go into regular

P.E. After I asked her if she was a physical therapist or a CMT specialist she

shut up. At times I am way too understanding. I look back and think I should

have been more assertive and had wheelchair access put in our temporary school

trailers.

[Guest guest]

I love your viewpoint on destigmatizing CMT! It's exactly what my

husband and I have tried to do as well. The difficulty we have run

into is this:

Before his disease progressed to where we are now (not being able to

make it through the school day without using a wheelchair); you

would find walking and laughing with his friends. He took PE

until he was not able to because he got so fatigued he couldn't stay

awake for his academic classes. In the eyes of his teachers and

administrators, he was a normal, healthy young boy. Because CMT is

uncommon in children the schools have difficulty understanding what

it is. They were not tuned into the changes that were occurring in

his legs and arms. was tenacious in keeping up and

maintaining a brave front. The teachers and one principal in

particular thought that we were exagerating what CMT is. That we

were enabling 's physical condition by giving into it. Of

course, they weren't with us during the physical therapy,

occupational therapy or speech therapy, the doctors visits, lab

appointments, hospital stays, etc.. They didn't see the child who

was so tired after a day of school that he could barely hold a fork

for dinner or get himself ready for bed.

We have invested in reams of paper, printed copious amounts of

information from all kinds of websites (this one included),

submitted documentation from neurologists, orthopedists,

yadayadayada and still meet with such blatant ignorance about CMT -

a recent stay in the hospital for tests required me to explain CMT

to at least 4 different nurses and one P.A.

It is easy not to focus on CMT when the symptoms are not having a

severe impact on the performance of daily life. I agree with you

completely. In our families situation, we have to focus on it more

to make certain that he receives the accommodations necessary in

school to help him be the best he can be.

Would love to brainstorm ideas with you about working towards public

awareness...

[Guest guest]

Wow, thanks for all the responses. I haven't had my daughter tested

yet because her adopted stepmother won't take her to an appointment.

My daughter is 4 1/2 and when I tell people she may have CMT they look

at me and her and say you both look fine - LOL I still feel like we are in the

dark ages.

I want to take my shoes off and say look at my feet and now say that!

Anyhow, when I had custody of my daughter I told the pre-k school she attended

and they did notice some tripping and fatigue, and they helped her a lot by

doing little things like holding her hand when the went places. Telling us that

she was falling and we changed to high top shoes and that helped a lot.

I was amazed to read about the problems riding a tricycle. My daughter still

has problems riding except when it is downhill or on a very smooth flat surface.

Also at the playground she is very unsteady on the equipment, but she

loves it so I just play with her and try to make sure she won't fall

off. She will be in school next year, did anyone do an IEP with the

schools? I was horrible in PE and it doesn't look like she is going to

be much better. Thanks!!

Kirk

[Guest guest]

Hi ,

I'm busy trying to catch up on the many boards (CMT, quilting etc) It just

seems that I cannot keep up with all the research on the various things I'm

researching! lol

I'm not quite sure who you were asking why their daughter hadn't been tested yet

( I'm assuming you meant the genetic test), but I can give you our perspective

on why we have not had our 13 yo daughter tested.

First, she has had almost every other test that will confirm CMT. In the past,

before the genetic tests were arround these tests were what was used to diagnose

CMT.

Second, although we have fairly good insurance, the genetic test is very

expensive. And it will only return satisfying results if you have one of the

variants they can test for. If the gene that has run amuck is not one of the

ones that they can test for, we will STILL be in the same boat.

Third, deciding not to have the test right now, does not mean that she cannot

have it later. If and when she decides that she may want to have further

testing (say because she wants to know before having children), she can opt to

have the test then.

Fourth, having a genetic test that confirms that she has CMT will not change her

treatment. Since there is not a treatment or medication she can take for it,

she is not being denied anything because she does not have a piece of paper that

confirms it genetically. She has had symptoms since she began to walk and,

although the doctors did not know she had CMT, she has had the

same kinds of " fixes " and treaments that children who have known they have CMT

have had.

Fifth, having an official genetic dianosis can effect your insurance and

insurability and redtape that must be untangled. I know whereof I speak. Not

only do I have MS, but I have another daughter who was born with a major birth

defect. Almost everytime our insurance changed, there has been little things we

have had to deal with. I hate to love insurance! lol If CMT had a medication

she could take that would slow or change the course of the disease I would test

her in a heartbeat. Having my MS confirmed via testing means that I can take

the ($12K a month) medicine that slows it down. If there only were such a

medicine for CMT! Sigh.

Sixth, we have always homechooled and have a VERY supportive church group. We

have never had to deal with any of the things that many of you have to deal with

concering schools etc. If I needed confirmation to force officials to give my

child any special treatments or considerations, then I might have her tested.

Right now, we feel we can give her a better and safer education. We have the

luxury, freedom and will to do that. Homeschooling however might not be for

everyone. As with almost everything else involving our children, it is a highly

personal decision.

Testing falls into that personal area, I think .... to test or not to test, that

is the question. lol It is something each person/parent must sort though and

make the best decision for them at the moment. To me, testing is sort of like

toothpaste. Once it's squeezed out of the tube, you can't put it back. That

does not mean that because we have decided to not test today,that we cannot

change our minds and test next year.

I hope this helps you understand why at least one set of parents have decided

not to test.

Have a great day!

Robin

[Guest guest]

My son is 14 and has CMT 1A. He is entering high school this year. I would

recommend putting accomodations in place as soon as possible, we spent his

entire 8th grade school year fighting with his teachers. He needs a lap top

because of his weak hands. He wears AFOs so changing for gym is difficult, he

needs extra time to get from class to class (they said he could have 4 extra

minutes!) he suffers from fatigue and missed over 20 days of school. Teachers

are always tell him to hurry up and he feels they just don't think anything is

wrong with him. It has been a nightmare. I requested a 504 plan which I am

still arguing over.

[Guest guest]

Hi Robin -

Actually, my question was addressed to Kirk regarding his 4 1/2 year

old, and only because he has a diagnosis of CMT. I completely

understand the why's and why nots of genetic testing and also have

personal experience with insurance companies and the imposing

ramifications of genetic diagnosis. I am also painfully aware that

testing is not 100% conclusive as my son has a variant...and was

actually diagnosed based on his symptoms first. We will have

testing done again when there are more tests available.

I applaud your homeschooling! And, as you stated so beautifully,

that is not an option for for every family- it certainly is not one

for ours.

Your response to my email seemed as if you had completely misread my

question and were somehow insulted that someone would ask such a

question and then you felt you needed to defend your position. The

only way we can help eachother is if we get to know each others

circumstances and that's where my inquiry for Kirk came from. It was

not my intent to offend anyone.

Believe me, you are truly blessed that you have a supportive church

community and a schooling mechanism in place that gives your child

all the support and accommodations necessary. I in no way implied

that a child without an actual diagnosis would not get the help

needed. All I said that was in our case, we were meeting with

tremendous opposition from our parish school, and still sometimes

within the public schools because, for the longest time our son was

able to keep up physically with his friends, and the fact of the

matter is, if people can't SEE the disability then in their opinion,

there must not be one. We all know how untrue and unfair that

judgement is. It happens day in and day out to kids with CMT -

regardless of whether or not they are " diagnosed " .

All I want is for our kids to be treated with dignity; for them to

be allowed to pursue their academic careers to the fullest; have

accommodations made where necessary and for people to start

understanding this disease.

[Guest guest]

I have a four year old daughter. Her pediatrician said the only time he ever

heard of CMT was in Med school, so he felt really bad for not knowing about it.

I too find it very frustrating to have to explain things to people that should

already know what it is. Even some family members are ignorant to the whole fact

of the matter. They don't care enough to research or even to listen when you

tell them because if they did you wouldn't hear well can the fix it every time

we have an apt. I just needed to vent on the ignorance of a disease that effects

so many people. I defiantly believe there needs to be more public awareness!

She has been to school yet but she gets very fatigue fast so PE is going to be

close to impossible for her since she can not jump, run too well, can hardly go

down stairs safely, I worry about school alot the closer it comes to the time

which is only next year.

[Guest guest]

My four year old is one of those where the gene responsible for CMT is unknown

so the tests where negative the best thing to do in that situation is find a CMT

genetic researcher and hope you qualify for the study but when it falls like

that genetic test say neg but all others say CMT they seem, to like the mystery.

[Guest guest]

Be thankful, that doctor is not dangerous. There are others who seem know it

all, yet are clueless. You pretty much have to accept that CMT is fairly rare

and GPs in general are not going to be the best source of care without input

from you. It's not a great situation but you have to play the hand you're dealt.

Ed

[Guest guest]

I worry all the time about my CMT kids. When Adam started first grade I called

the teacher the day before to tell her about his special needs. She was so

wonderful about it. I told her I was worried about him being last in line and

left behind blah blah blah all the CMT worries.

After we talked she decided that A came first in the alphabet so Adam would be

the line leader all year and he would set the pace for the entire class. At the

end of the year I thanked her again for all the classroom modifications she had

made for Adam without the red tape. She said a lot of the modifications she was

going to continue using especially the abc order line. She said it helped the

kids learn the order of the alphabet faster. Another modification the teacher

and I came up with was to always let Adam have a ball at recess.

I work things out when I worry.

[Guest guest]

My daughter is 13 and son is 7. My daughter has been diagnosed but my

son has not. I am sure he does have it. I have never put it down in

their record. I have spoken to the coaches each year to remind them

to keep an eye on them. My son doesn't seem to be bothered, but my

daugher has some pretty rough gym days. We told her coach what is

going on and they watch out for her. Usually if she is running they

can see that she needs to slow down or just walk. They have been

great.

Angie

[Guest guest]

I am opposite on this. My kids would die of embarrassment if I went around

telling people their personal business. Especially now that they are teenagers.

LOL

[Guest guest]

Hi ,

Your son qualifies for a 504 plan under OHI (other health impaired) . Get a

lawyer and sue the schools pants off. You can get your legal fees back in the

law suit. The school doesn't get to choose how many extra minutes your son

needs.

Have your doctor write a script open ended saying he will have extra

time as needed. You need to look into Adaptive PE. The APE kids don't have to

dress out. It is also not during regular PE time. The next teacher that tells

him to hurry up scream at so loud that everyone is afraid of you.

Been there done that and have never had a problem since. I went into the office

and went off on the Principal about a teacher making my son sit on the cold

ground and watch everyone else play. I still get so mad about that. This year

Adam had to go to all day resource because his hands just don't write as fast as

they need to. He had so many modifications along with the 20 other kids in the

class it was heaven. He went from failing to a 3.0. Modifications do work. We

have to be advocates for our kids, no one else will be.

[Guest guest]

Our middle son is 8 and he just finished 2nd grade. This year he had

an IEP that specified occupational therapy and physical therapy as

well as a modified gym class. It was a bit of a fight but it was

worth it. This year he was an exceptional student, and the additional

therapy and an understanding teacher made all of the difference in

the world for him.

The school didn't really see at first the effects that CMT was having

on him. For Cassidy, our son, he was getting fatigued and would tend

to talk to his friends when he was tired of writing and/or was too

tired to walk over and talk to them. His teacher in 1st grade tended

to see this as volitional and oppositional when we felt he was never

oppositonal at home. He is not one to complain or ask for breaks or

otherwise ask for special treatment. Having this specified in an IEP

vs. the less well enforced 504 he had for K and 1st grade helped him

to focus better when he was tired. It seems to us that sometimes

professionals including teachers and some doctors say they understand

but they really do not understand.

We had some rather difficult discussions with the school at first.

One PT actually said that PT was pointless since it was neurological

and " he would never get any better. " Our experience and Cassidy's

performance suggested otherwise. While it may be true that he can't

work on the atrophied muscles, stretching those muscles and

strengthening the other muscles helped a great deal. In fairness to

the school, I don't think they really knew what to do for Cassidy. My

experience with a variety of children with medical disabilities in

school is that disabilities seldom effect just the area of disability

and usually effect multiple areas. As a result, oftentimes what looks

like willfull or purposeful noncompliance is in some way an attempt

to compensate for the disability.

In addition, it has also been helpful for us to talk to the class

about Cassidy's braces. His friends/peers are highly supportive of

him, and even though he knows most of the kids, they tend to stare

less and be more understanding when they understand in an age

appropriate way his disability. Explaining that it is like walking

through a couple feet of snow all of the time usually gets a lot of

nods, and helps everybody understand why he might hold up the class

somewhat on class trips etc.

Our other two boys, and Aidan, are 12 and almost three. We're in

the wait and see mode with them. We're just going to have to wait and

see, there's nothing to be done for it anyway; all treatment is

entirely symptomatic. All we can say is that Cassidy is a great

blessing to us, and whatever he has lost, or will lose, due to

his CMT seems to be compensated for by his amazing tenacity. He never

gives up, he never complains, he always tries his best; he is an

example to all of us in our family. We thank God for him, all of him

including his uniqueness, every day.

[Guest guest]

Hi everyone,

I was reading all the posts about kids and schools. I kind of dread

the day Addie goes to school. I just don't want her to all of a sudden realize

she's not " Normal " . She honestly believes she's a fast runner which is kind of

cute because she's being outrun by snails most

days.

My husband had nightmare stories from his small country school. The teachers

would belittle him in front of the students, and one teacher always called him

lazy. She was the PE teacher. He says the kids were way easier on him than the

teachers. One day the PE teacher made him go all by himself and jump on a full

size trampoline the entire period. He said he was so tired and embarassed.

I am reading the book " The Elephant in the Playroom " or something like

that. It is stories of parents with children with special needs.

I'm thinking about how important it is for me to be my child's advocate and not

let anyone tear down their spirit and positive attitude about life. Anyways

just my thoughts!

Amelia

[Guest guest]

Hello All,

I was diagnosed at 5 and knew I was " different " but I honestly thought I ran

fast and " normal " and it wasn't until Junior High that kids and the teachers

realized I ran funny. They never excused me from gym and I couldn't pass gym

until I ran a mile and did the

shuffle run, etc. People thought I was joking around or was being lazy too.

Unfortunately my whole life people including my family thought I was just being

lazy and had to push myself and pushed by other people

to keep up with the rest. In high school I finally was excused from gym but not

until I got a lot of documentation. My ex wife was in complete denial too and

thought I was faking it.

The disease truly is a " hidden disease " at times. I am afraid my daughter who

is 7 has CMT and my ex wife who I share custody

refused to get her tested because she is in complete denial.

I do not see the need to get her diagnosed at her age because she does feel

normal and has no idea she maybe different. The difficult part will be later on

when she gets older and may have to be excused from gym and then she will have

to be tested. I think you have to

balance out the need to fit in and not being labeled at such a young age as

different or disabled but people/ educators need to be aware of limitations.

I had to work twice as hard growing up and in some ways it was good because it

forced me to fit in and also prolonged the progression of the diesase because I

was constantly in movement.

Andy

[Guest guest]

Hey Andy!

Great post! Wonderful explanation!

I probably would never had said anything about in the

schools if his disease hadn't progressed so quickly. For us, it

wasn't just the altered gait....he was active in PE on a basketball

team the whole nine yards until he started falling asleep in class

after PE, or had to go to the nurse with severe cramps and such and

would sleep there for an hour or so during the school day. This

started when he was in the 4th grade - we received the diagnosis at

the end of that school year. Up until then he was a kid who ran a

little wierd, but pretty much kept up. It's been a downhill thing

for him since then. If he has a good day and is active and playing

outside and swimming etc, the next 2 to 3 days he can barely move...

So, I can understand not testing until the symptoms finally require

it....thanks for wording it so well. I guess what all of these

conversations come down to is finding what works best for your child

and for your family and following your instincts.

[Guest guest]

I'm finding this discussion thread interesting, because I had all of the

symptoms of a CMT kid that you've been describing. Because I was so much

taller than all the other kids, it was assumed that my lack of physical

ability was due to my size. No one ever suspect there might have been

anything else going on, which is probably a big reason why I was 50 before

ever being diagnosed with CMT.

I remember in first grade having a sixth grade desk. In second grade, I was

the tallest kid in the K-6 elementary school. In 6th grade, I was the

tallest kid in the school district.

By 9th grade, I was 6'9 " and being monitored for pituitary imbalances and

considered for possible hormone injections to stop any further growth. The

doctors figured that since I couldn't run, jump, or catch a ball, a

basketball career wasn't in my future, so any more height would be a

disadvantage for me.

PE was the only class that my parents didn't get upset about when I got a

failing grade. I remember one quarter in 8th grade that I got a " C- " in PE

and my parents were thrilled at my improvement. Ha!!

[Guest guest]

Hi !

Loved your post and your sense of humor! is 5'10 and

starting 8th grade this year so I completely sympathize with what

you went through. The docs predict he will stop at around 6'3 but

you never know!

We focus on the academics and the elective classes he takes...PE is

a thing of the past. He gets more out of swimming in the pool which

we may try to have heated this year to keep him in it longer into

the fall and get him back in earlier in the spring. (Got to win the

lottery first! HAHA)