Introduction/New to Group

December 27, 2002

Here are some things about me. I am a 29 year old woman without

CMT. My daughter, Tia, is 10 and her birthday was November 14th,

she has CMT. My husband, Julius, also has CMT. They were both

diagnosed about 3 years ago. I also have a 3 year old daughter,

Ciera, who hasn't been tested, but doesn't show any signs of it

like Tia did. The Dr. say that each child has a 50/50 chance of

getting it and we couldn't take the news if Ciera had it when we

found out about the others. It was too hard. She was still an

infant.

We are just learning more about CMT, since we are new to all to

this. Tia has just been given the opportunity to represent

Northern Minnesota as the MDA Ambassador. Tia didn't walk until

she was almost 2. She never did crawl. As an infant she had a

ton of ear infections, so they attributed her slow walking to that.

Once we got the ear infections done with and she was still falling

down we explored to find out why she was still falling down. She

was a very small little girl until about two years ago and then she

had a growth spurt and caught up with her class. I took her to an

orthopedic specialist who did serial casting and then testing on

Julius for CMT. Julius had the " shocking " tests done and then the

blood work and it was confirmed that he had CMT. They then did the

blood work on Tia and she was also diagnosed.

In Nebraska they didn't do much for her. Gave her small braces in

her shoes and said to stretch. Julius had braces up to his knees.

We just moved to Minnesota this year. In Minnesota the medical

technology is better and Tia went through serial casting again and

now has braces up to her knees. She stretches at school twice a

day and has an IEP for gym class. She will also be getting night

splints so that it helps keep her stretched.

Julius goes to the doctor on the 13th to be evaluated for surgery.

They are talking about cutting the bones in his foot and stretching

his leg muscles. Have you ever heard of this? I am scared that he

will get worse as he gets older. I am not totally aware of what CMT

can do to them. My biggest fear is that they won't be able to walk.

The Dr.s say that they can't tell us if that will happen.

Tia is a beautiful little girl and has been involved with pageants

since she was 2. She has gone to MDA summer camp for two years.

She goes to Bible camp and tries to act as if everything is normal.

She is in Girl Scouts and is a very happy little girl. She has done

a great deal to get her classmates to understand about CMT and her not

being able to run very fast. She is unbelieveable. I can't believe

how strong she is.

Please let me know what I should look for in her future. What problems

we might incure. Sorry for being so long winded, but just wanted to

give a brief run down of who we are. LOL Talk to you soon.

May 3, 2005

Hi Ann,

Welcome to the group! It does sound like what you're describing is

a brachy headshape. Many peds brush us moms off like that, most

simply b/c they're uneducated about plagio and its treatment. You

could ask your ped for a referral either to a pedi neurosurgeon or

craniofacial doctor. Or you could go to Cranial Technologies in

Clinton, CT for a free evaluation. They will give you an honest

opinion as to whether or not would benefit from a helmet. You

do need a prescription, either from your ped or a specialist if you

do decide to band him. Cranial Tech works closely w/doctors in

their area that would be able to evaluate him also. Going the

specialist route often takes much longer and in many cases is

unnecessary. With some cases of asymmetry it is necessary to rule

out craniosynostosis, but with a brachy case it's just more a matter

of deciding if you want to treat it and getting a prescription.

Because of his age I wouldn't go the specialist route if you don't

have to. We do have other members who have adopted internationally,

one who just posted as a new member this week. I live in Mass too

and we have a handful of other members from the state as well. Good

luck and please keep us updated.

, mom to Hannah, DOCgrad

Cape Cod, Ma

http://hannahsnoggin.typepad.com

> Hi,

> I recently found this site after searching on the Internet

for " flat

> occiput " . I never knew that this actually had a name until

finding

> the plagio site! I was also fortunate to find the cranial tech

web

> site and found lots of valuable info there.

>

> My recently adopted son is 7 months old and has a very flat spot

(I

> assume bracy) on the back of his head although I don't notice any

> other misalignment on his face. I asked our pedi about it at our

> first visit and he didn't seem too concerned, only saying that it

> should round out and that any issue would be purely cosmetic.

His

> mostly bald head helps to magnify this.

>

> Our son is from Korea and I was told that flat spots are very

common

> in Korea as they consider it a sign of beauty…and they spend lots

of

> time lying on their backs. Anyone else in this group have an

> internationally adopted child?

>

> I plan to ask my pedi for a referral to a pedi neurologist for the

> next step. Is this the typical next step? I'd like to get

another

> opinion to see whether my son should be considered for a band. I

> realize time is of the essence with my son approaching 8 months of

> age at the end of May so there is a lot for me to think about as I

> wait to get this referral.

>

> This site is a great resource. Many thanks.

>

> Regards,

>

> Ann

> Mom to , 7 months

> Massachusetts

May 3, 2005