Feeling Loss

[Guest guest]

I've heard some of you talk about pain with CMT. My son and

myself have experienced the opposite. My son broke his hand/wrist in

3 places and there was no pain or swelling. He came to me and said "

look what I can do with my arm and hand. " I thought I would have a

stroke! I immediatly took him to the Doctors and after X-rays the Dr.

couldn't believe he wasn't in pain. My son also claims to not be able

to feel his feet sometimes. I have some loss of sensation in my toes,

but I have enough feeling that I know where they are-lol.

Actually, I don't experience much pain, just discomfort and

mabe some soreness in other muscles trying to compensate. I just

can't balance, walk on uneven terrain, and the energy is a big thing.

How are some of your pains associated with the disease?

[Guest guest]

Sharon, I understand how you feel. My daughter is older, but last year my

dd's therapist and pdoc were telling me they were concerned about her being a

functional adult. They thought I should look at her situation more

realistically.

She is a highly gifted teen and it was so hard to imagine her not being able

t do all the things I had envisioned. She would totally shut down when things

got out of control and sometimes could go days without even getting out of

bed. That said, she is now going to be a junior in high school and is doing the

best I can remember. I know things can change at any time, but this has

certainly given me hope for her future again. Is you dd on meds and in therapy?

My dd

had been in therapy and on meds for 2 1/2 years, but it was the last med

adjustment that made such a difference for her. Just so you know, I know lots of

kids who were held back for various reasons and it turned out to be the best

thing for them. Good luck and I hope things improve soon. Kim

In a message dated 9/4/2006 9:41:24 AM Central Standard Time,

sdonovan1@... writes:

For the first time, I am feeling loss with my dd's OCD. She is 5 and should

be starting kindergarten, but was having so much anxiety about it, we decided

to wait until next year. She will be in another program, but it isnt the same.

I am sure if she didnt have OCD, so much anxiety and sensory issues, we would

have sent her this year. While I know it is the best decision for her, I just

feel sad. It makes me realize these issues are bigger than I wanted to admit

and are going to effect her life more than I realized. <sigh>

Sharon

[Guest guest]

Sharon,

My son will be 5 at the end of this month, and has " bad thought " ocd. I too,

was going crazy trying to decide if I should send him to kindergarten because of

this.

I got him on the smallest possible dose of zoloft, and he is doing great. So

far, he does not say any ocd obsessions in class. The only thing that has

actually saved him is the fact that kindergaren here is only 3 hours. If it were

a full day, I would have had to keep him back.Is your dd on meds? I " m not

advocating them, believe me. I just want to let you know my ds was so anxious in

pre-school, the teachers were calling me daily to pick him up because he was

screaming and crying he was going to vomit. He would scream and cry when I left

him there. It was awful. The medication has stopped all of that anxiety. I know

without it , he would definitely not be able to go.

My dd had the same problem also.She has ocd and other anxiety issues, as well

as bipolar. She would physically vomit in the morning before school , she was so

nervous. I had to put her on zoloft also, and it took that part of her disorder

away.

Hugs

Judy

[Guest guest]

Thank you so much Chris. Your words really help.

Sharon

Re: feeling loss

Hi Sharon, I can imagine how that would make me feel too, even when

it's for the best.

But keep in mind that every thing done now = holding her back,

working on her sensory issues, anxiety, OCD... will make her future

years sooooo much easier for her.

didn't get occupational therapy (OT) until 6th grade and got

that privately. It was to try to help him with his pencil grip

(awkward grip, wanted to correct it) but they worked on his " whole

body " including the sensory issues and it really helped. I wonder

how easier some things might have been if he'd gotten it at a much

younger age, like way back in 1st grade when I first asked the school

about it (OT). You may want to have the school system evaluate her

for OT.

Also, my sons are now ages 17 (twins) and 21. And I was an extremely

shy, fearful child myself. So, from experience here, things will

improve with your dd due to your help, her maturity/experiences in

general over time, and her comfort level at school will increase

too.

Quick thoughts, but you're making the best decisions for her now and

things will be easier for her later because of them!

>

> For the first time, I am feeling loss with my dd's OCD. She is 5

and should be starting kindergarten, but was having so much anxiety

about it, we decided to wait until next year. She will be in another

program, but it isnt the same. I am sure if she didnt have OCD, so

much anxiety and sensory issues, we would have sent her this year.

[Guest guest]

Thank you so much Chris. Your words really help.

Sharon

Re: feeling loss

Hi Sharon, I can imagine how that would make me feel too, even when

it's for the best.

But keep in mind that every thing done now = holding her back,

working on her sensory issues, anxiety, OCD... will make her future

years sooooo much easier for her.

didn't get occupational therapy (OT) until 6th grade and got

that privately. It was to try to help him with his pencil grip

(awkward grip, wanted to correct it) but they worked on his " whole

body " including the sensory issues and it really helped. I wonder

how easier some things might have been if he'd gotten it at a much

younger age, like way back in 1st grade when I first asked the school

about it (OT). You may want to have the school system evaluate her

for OT.

Also, my sons are now ages 17 (twins) and 21. And I was an extremely

shy, fearful child myself. So, from experience here, things will

improve with your dd due to your help, her maturity/experiences in

general over time, and her comfort level at school will increase

too.

Quick thoughts, but you're making the best decisions for her now and

things will be easier for her later because of them!

>

> For the first time, I am feeling loss with my dd's OCD. She is 5

and should be starting kindergarten, but was having so much anxiety

about it, we decided to wait until next year. She will be in another

program, but it isnt the same. I am sure if she didnt have OCD, so

much anxiety and sensory issues, we would have sent her this year.