Re: Anyone else with speech delay and craniosynostosis??

[Guest guest]

Tammy,

I don't know much about cranio. I have a plagio baby.

Have you checked out the Cappskids website?

http://www.cappskids.org/

They may have some information there.

Take care,

Heidi- SAHM to 7, 4-1/2 (DSI, Apraxia) 10-1/2

months (VUR, Tort/Plagio-DOC Banded 2/14/03)

> Hello,

> I was wondering if there is anyone else on the list that has a

child

> with a speech delay and had surgery for metopic craniosynostosis.

> Our son had reconstuction surgery on his metopic suture in his

> forehead when he was 10.5 mos old. He is now almost 3.5 years old

> and has a severe speech delay. We found out last week for the

first

> time from his NS that speech delay goes along with this surgery.

We

> are now trying to find the best therapy for him. My son has been

on

> proefa almost 1 year now and has made alot of progress but it is

> still slow. Thank you!!

>

> Tammy

[Guest guest]

Tammy

My son has not had surgery for craniosynostosis, but they did check him for

it because of his metopic suture sticking out a bit. He does have severe

speech delays, only saying a few words but can make many letter sounds and

he uses sign language fairly well. He has dolichocephaly (long skull from

front to back) and a Dandy variant, no hydrocephalus though. He is 8

years old.

Cheryl

mom of Cameron 3 q deletion

[ ] Re: Anyone else with speech delay and

craniosynostosis??

Tammy,

I don't know much about cranio. I have a plagio baby.

Have you checked out the Cappskids website?

http://www.cappskids.org/

They may have some information there.

Take care,

Heidi- SAHM to 7, 4-1/2 (DSI, Apraxia) 10-1/2

months (VUR, Tort/Plagio-DOC Banded 2/14/03)

> Hello,

> I was wondering if there is anyone else on the list that has a

child

> with a speech delay and had surgery for metopic craniosynostosis.

> Our son had reconstuction surgery on his metopic suture in his

> forehead when he was 10.5 mos old. He is now almost 3.5 years old

> and has a severe speech delay. We found out last week for the

first

> time from his NS that speech delay goes along with this surgery.

We

> are now trying to find the best therapy for him. My son has been

on

> proefa almost 1 year now and has made alot of progress but it is

> still slow. Thank you!!

>

> Tammy

[Guest guest]

Dear Tammy,

I was so interested to read your posting, my son has mytopic

craniosyntesis but was not diagnosed until almost 18 months. At that time,

(and after several opinions) my husband and I opted not to do the surgery as

there was a real possibility of bleeding to death. He now has severe

speech delay and feeding issues and now that you said something, I am

wondering if it has anything to do with this. His MRI has shown no pressure

on the brain and we have his eyes tested every 6 months to ensure no pressure

is building, but still, I wonder if the mytopic craniosyntesis has anything

to do with his speech delay.

Thanks,

Heidi, mommy to 3 yrs old.

[Guest guest]

> I was so interested to read your posting, my son has mytopic

> craniosyntesis but was not diagnosed until almost 18 months. At

that time,

> (and after several opinions) my husband and I opted not to do the

surgery as

> there was a real possibility of bleeding to death. He now

has severe

> speech delay and feeding issues and now that you said something, I

am

> wondering if it has anything to do with this. His MRI has shown no

pressure

> on the brain and we have his eyes tested every 6 months to ensure no

pressure

> is building, but still, I wonder if the mytopic craniosyntesis has

anything

> to do with his speech delay.

>

> Thanks,

> Heidi, mommy to 3 yrs old.

Hello Heidi,

I don't know what craniosynostosis is. I tried looking in the

medical dictionary here, but it is not listed.

http://cancerweb.ncl.ac.uk/omd/index.html

Anyway, forgive me, I may be totally off base (since I don't

even know what this condition IS!)..... but your discussion

of " pressure " in the brain leaves me wondering if cranial

manipulation would be a possibility. I have been getting

cranial manipulation done for a few months, and had not

heard of it before that! Of course, it is best to do it

soon after injury or trauma. As I understand it, the main

point of cranial manipulation is to relieve pressures.

By the way, it is VERY gentle.

I'm including a few websites in case you want to read more.

best,

Moria

The Cranial Academy http://www.cranialacademy.com/ The Cranial Academy

has a certification in cranial osteopathy. It is a

professional organization of osteopaths. As listed on this page:

http://www.cranialacademy.com/finddoc.html , they will send

you referrals BY MAIL if you send them a SASE and location you

are inquiring about: The Cranial Academy, Referrals, 8202

Clearvista Pkwy #9D, Indianapolis, IN 46256. (317) 594-0411

http://www.myofascialrelease.com

https://www.upledger.com/pract/default.asp The Upledger

Institute

http://www.iahp.com/ International Association of Healthcare

Professionals [Code " CST " and " CST-D " are used for

cranial-sacral therapy. The code DO is used for " Doctor of

Osteopathy " . Some osteopathic doctors do cranial sacral or other

similar forms of adjustments. The code " O.M.M. " is used for

" Specialist in Osteopathic Manipulative Medicine " --I'm not sure but

this sounds related.]

Info on cranial-sacral therapy:

http://www.craniosacral.com/craniosacral.htm