Re: central nervous system problems

[Guest guest]

Hi ,

I'm going to say that Hayden was pretty similar. Very behind in his

gross motor development or on the very low end of normal. We did a

lot of tummy time and our PT helped out a lot by showing us how he

should be transitioning into and out of sitting. We did lots of

over the knee, over a cushion, sitting at a little floor bench (him

on the floor, playing with a toy on the bench). I also had to

literally teach him how to crawl (it was my goal that he crawl by

his first birthday and he managed to make it but it was very slow

and hesitant and he would only go a couple of paces. I was at a

conference a couple of weekends ago at the Ross Mc school here

in Ontario and one of the sessions there talked about the importance

of crawling in helping to develop a good walk. I found that the key

was finding something that Hayden had to have and then only using

that toy/item when we were working on his gross motor. At 3.5 he is

still behind. He just doesn't have the balance and coordination

that other kids his age do. But he loves to jump on the couch with

me holding his hands... good things come to those who wait I guess.

What your Dr will be looking for on an MRI? I know that there has

been a lot of discussion here about how vestibular issues can impact

muscle tone.

Meredith

>

> Does anyone have any comments about central nervous system

> problems? The neurologist wants to do an MRI on Sara in a few

> months b/c of her low muscle tone. We have done tummy time all

> along (she is 8 months old) and she still struggles to hold her

head

> up, and now we are working on helping her to sit up, her back

> muscles seem really weak now. We are not suprised to except that

> she probably wont " catch up " with her gross motor development

before

> her first birthday, but again would like to hear any relevant

> experiences!

> thanks in advance!

> Mark

[Guest guest]

He isnt looking for anything specific- just anything that stands out

as abnormal. Xrays have shown a slight curve in her spine but not

enough to call it scoliosis- it seems to be more muscle related. She

already had a ct scan done in the nicu b/c her legs were a little

stiff- that eliminated Cerebral Palsy. Sidenote.. she really doesnt

have that stiffness now- they ran a test for everything she did in

the nicu!!

Mark

> >

> > Does anyone have any comments about central nervous system

> > problems? The neurologist wants to do an MRI on Sara in a few

> > months b/c of her low muscle tone. We have done tummy time all

> > along (she is 8 months old) and she still struggles to hold her

> head

> > up, and now we are working on helping her to sit up, her back

> > muscles seem really weak now. We are not suprised to except

that

> > she probably wont " catch up " with her gross motor development

> before

> > her first birthday, but again would like to hear any relevant

> > experiences!

> > thanks in advance!

> > Mark

[Guest guest]

,

Do you have the CHARGE Manual. There is a section in there about neurology.

There are some CHARGE children who have conditions that can be seen on MRI,

but I think the number of kids is small. I think most have irregularities

of the nervous system that would not be seen on an MRI, such as

irregularities involving the cranial nerves and the autonomic nervous

system.

Does the neurologist have experience with CHARGE to know that many if not

most CHARGE kids have low tone, especially of the upper body? Sharing the

section from the CHARGE manual could serve as a discussion point to help you

understand more what he is concerned about. Possibly he just wants to rule

out any other issues. As has been discussed the vision and vestibular

issues also have a lot to do with motor development.

Good luck

Kim L

central nervous system problems

Does anyone have any comments about central nervous system

problems? The neurologist wants to do an MRI on Sara in a few

months b/c of her low muscle tone. We have done tummy time all

along (she is 8 months old) and she still struggles to hold her head

up, and now we are working on helping her to sit up, her back

muscles seem really weak now. We are not suprised to except that

she probably wont " catch up " with her gross motor development before

her first birthday, but again would like to hear any relevant

experiences!

thanks in advance!

Mark

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

[Guest guest]

Kim,

Getting the charge manual has been on my to do for too long!! I

will definitely get that asap! The neurologist said he was familiar

with it- just like everyone else I ask when Sara is a new patient-

maybe that has contributed to our confusion. " familiar with " does

not mean experience with & definitely not expertise with.. I guess

the rarity of CHARGHE has more implications than I have

acknowledged. I have had all sorts of things finally dawn on me

since last week when I casually asked if sign language would benefit

Sara!!!!!!! Thanks for the input- you're a wealth of resources and

support!

Mark

> ,

>

> Do you have the CHARGE Manual. There is a section in there about

neurology.

> There are some CHARGE children who have conditions that can be

seen on MRI,

> but I think the number of kids is small. I think most have

irregularities

> of the nervous system that would not be seen on an MRI, such as

> irregularities involving the cranial nerves and the autonomic

nervous

> system.

>

> Does the neurologist have experience with CHARGE to know that many

if not

> most CHARGE kids have low tone, especially of the upper body?

Sharing the

> section from the CHARGE manual could serve as a discussion point

to help you

> understand more what he is concerned about. Possibly he just

wants to rule

> out any other issues. As has been discussed the vision and

vestibular

> issues also have a lot to do with motor development.

>

> Good luck

>

> Kim L

>

> central nervous system problems

>

>

>

> Does anyone have any comments about central nervous system

> problems? The neurologist wants to do an MRI on Sara in a few

> months b/c of her low muscle tone. We have done tummy time all

> along (she is 8 months old) and she still struggles to hold her

head

> up, and now we are working on helping her to sit up, her back

> muscles seem really weak now. We are not suprised to except that

> she probably wont " catch up " with her gross motor development

before

> her first birthday, but again would like to hear any relevant

> experiences!

> thanks in advance!

> Mark

>

>

>

>

>

>

> Membership of this email support groups does not constitute

membership in

> the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@c... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada,

you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@c... Thank you!

>

>

[Guest guest]

,

My son was very slow to make those gross motor milestones. He never

wanted to be up right. He would roll around the house and that was his mode of

movement for a very long time. We encouraged sitting and then crawling (he

hates to weight bear on his arms, so it was very hard work for everyone

including the PT). He never had issues with lower body strength, he just didn't

want to be up right. We put him in a baby walker (not a medical walker) to help

him understand that being up right was the way to go. Once he experienced that

and he was able to pull himself up, we bought parakeets and he would stand up

and hold onto the table to stare at them for hours. Next came the medical walker

and he finally dumped that in March of this year. He walks around the house

just fine and sometimes tries to run, but it's safe inside. Outside he needs to

be watched. He has become so independent he doesn't want us holding his hand at

all. Josh is 5. My point in my long story is that with

persistence from you and your Therapists, it will happen. Be careful about

setting goals that say " by the time she is.... " I think this will set you up

for disappointment. Goal setting is good, but be careful with the timeline.

Good luck, I know it will happen.

Bernie

Mark wrote:

Does anyone have any comments about central nervous system

problems? The neurologist wants to do an MRI on Sara in a few

months b/c of her low muscle tone. We have done tummy time all

along (she is 8 months old) and she still struggles to hold her head

up, and now we are working on helping her to sit up, her back

muscles seem really weak now. We are not suprised to except that

she probably wont " catch up " with her gross motor development before

her first birthday, but again would like to hear any relevant

experiences!

thanks in advance!

Mark

Membership of this email support groups does not constitute membership in the

CHARGE Syndrome Foundation.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information

will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may contact

CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!