New Member

[Guest guest]

,

Hi I am Jill. I work at IBM there in Pok! Welcome!

We are almost neighbors! Do you have some pictures

you send or post so we can take a look and give you

our opinion? My son Josh (one of twins)was born with

tort and plagio, and didn't get diagnosed til he was

18 months old. He got his DOC Band about 2 months

ago. He is doing pretty good. Who was the

neurologist you saw? If you e-mail direct I can give

you the name of the one we use, she is supportive, and

familiar with plagio. If you look at the birds eye

view of his head his ears are off. One is lower and

more forward. His cheeks are off, one bigger, his jaw

is higher on one side and he has a bulge on the right

side of his head in back. Those are just things to

look for. When you get a chance look in the files

section, you will find many pictures and lots of good

information.

Good luck and keep us posted. (v2jb@...)

Jill (Mom to Josh & Jarred in Accord, NY)

--- Feo <karen.feo@...> wrote:

> Hi I've recently joined the group and find this site

> to be comforting

> and informative. It's a great support system. Just

> as soon as I get

> the time and figure out how to, I will send a

> picture.

>

> My name is and my husband is Tony. We live in

> Poughkeepsie, NY

> and we have 12 1/2 month old daughter named Kayla.

> She was born

> breech with slight hip displesia. She has been

> wearing the Pavoloc

> Harness since day 2. She's had numerous x-rays, the

> latest back in

> September. I was disappointed to find that her hips

> were at 30

> degrees and 26 degrees. Our ortho told us babies

> hips are born at 30

> degrees and for her age should be in the low 20s. I

> feel it has done

> nothing but my doctor is optomistic and says she is

> progressing fine

> and doesn't feel she will need surgery. We go back

> in March for an

> x-ray and pray it correcting her hips.

>

> We are not sure whether Kayla was born with the

> torticollis but we had

> not discovered it until she was a few months old.

> We did the PT

> sessions authorized by the insurance co. and that

> was it. Later we

> had to change ortho's because of insurance reasons

> and the new ortho

> was very concerned more with the tort that the hip

> displesia and order

> PT sessions 3x a week. She told us about the Early

> Intervention

> program the state offers. She now as therapy

> sessions every other

> week (we do the exercises daily on our own) where

> the therapist comes

> to our home and EI picks up the cost. The program

> allows the PT until

> the child is age 3. Hopefully the problem will be

> corrected by then.

>

> Around two months of age, we noticed the flat spot

> on Kayla's head.

> As I am sure like the rest of you, we became quite

> alarmed and had her

> examined by our ped and had her head x-rayed. They

> say everything is

> fine (of course) these docs annoy me sometimes. But

> we weren't

> satisfied so we took her to a neurologist. She said

> the flat spot

> will go away and that there are no neurological

> problems. They did

> not feel she needed the helmut.

>

> Now about 3 weeks ago, we noticed a lump on one of

> nipples. We

> immediately took her to our ped and got two

> conflicting opinions with

> 1/2 an hour. Last week Kayla had her 1 year checkup

> and I had the

> doctor (another one in the group) look at it. He

> says it's probably a

> cyst but to keep an eye on it. I was wondering if

> anyone else has any

> thought or opinions on this.

>

> Wishing you all a new year with better health and

> much happiness.

>

>

>

>

__________________________________________________

[Guest guest]

In a message dated 1/18/01 7:04:51 PM Pacific Standard Time, syddesi2@... writes:

Did anyone in this group have a child with more of a facial problem, than the head?

Amy - Afraid we have the head a facial thing going. I've been told and like to think if you get a round head the facial bones will follow. We've got a pretty good case of facial asymmetry and I've been told we'll never see total correction. Think of it as character I've been told. Anyway, some doctors have told others different stories. I just don't think every child is going to correct the same so time will tell. Some tort moms have seen great improvements with no treatment on head shape and facial asymmetry. Tough question. We've got an irregular head too. Intrauterine position caused his right side of his head to be smucked up against his shoulder.

Tammy & 12/8/99

[Guest guest]

Welcome Amy,

You are in the right place. unfortunatly, my son Sam is one of the

ones that doesn't have the 'normal' plagio look. He has an elongated

head. Sam is 9 months old and was put in a band this week. For us,

this has been a long process, you are lucky to have a ped. that was

willing to recognize this as a REAL issue. I know from reading

others that assymmetry DOES correct but it is often the last thing

that does (if that makes sense;0) Many of us have been sent to

neuro.'s some have had better results than others. My advice for the

next dr. visit;

MAKE HIM SIT DOWN (IN A CHAIR) AND TALK TO YOU. I have found that

they don't spend as much time as they could with you.

I know some dr.s use just an x-ray to determine no cranio. Because

Sam's is so close to a sagital craniosynostosis in appearance, we had

a CT scan as well. I think there are others who have had one as

well. BUT, some do not.

I hope I was of some help. Others I am sure will offer more advice.

I know Kendra's daughter had a similar shaped head as the one you are

discribing (ears, flat spot...) She and others are wonderful.

Good luck,

and Sam

4/11/00

banded

1/16/01

> Hi ALL! I am so happy to find this site! At this time my

pediatrician

> has diagnosed my 9 month old max with plagio without

craniosynotosis.

> I am really looking for somebody to tell me that the asymmetry of

my

> baby's face will be fixed. We have an appt. with a neurosurgeon

next

> week. I'm not even sure why. Did anyone in this group have a child

> with more of a facial problem, than the head?

> My baby's eyes are so different, they also have skin folds in the

> corners, his forehead is lopsidded, his ears are different and not

in

> the same place, he just doesn't look right. Can it be fixed?

> We had an xray at my pediatrician's request. Is the xray accurate

in

> determining suture fusion? Do helmets or bands help fix faces?

> If anybody can answer any of my questions....THANK YOU!

>

>

> By the way, I have looked at all of the pictures and your babies

are

> all so beautiful.

[Guest guest]

Hello and welcome!

Hopefully you will get some of your questions answered when you have your

appointment with your neuro. It is good to hear that your ped is so

supportive. That is a rare instance for people in this egroup!! I also feel

that my daughter's facial assymetry is more noticeable than her slight

flatness to the side of her head. She is wearing a locally made helmet and

has been in it for about 12 weeks. We have noticed some improvement in her

facial assymetry, but not a whole lot. The amount of correction depends on a

number of things. One of the big things is how much your child grows during

the time he wears the device and how severe the assymetry is. Our orthotist

tells us that the ears are the hardest to correct since ears are attached to

muscles in the neck. (I think that is what he said) We have had some

correction and we are hopeful that we will have even more. We had a 3-D CT

done and I don't know how that compares in accuracy to an x-ray, but I'll bet

that the x-ray can show if the sutures are closed or open pretty well. Maybe

the neuro will order a CT?

I'm glad you found this egroup. I don't know what I would have done without

it. There isn't a question you can ask about plagio that someone here can't

help you with! Please keep us posted and let us know how the appt. with the

neuro goes.

Marci (Mom to 1/12/00)

[Guest guest]

Hi Amy!

Welcome! My 7-month-old has similar problems (plagio, no cranio; one

ear is further up than the other; her forehead sticks out a little on

one side) but her facial assymetry isn't too bad.

Xrays ruled out cranio when she was 4 months; at 6 mos my ped.

finally determined that her head wasn't rounding out to his

satisfaction. It took me 6 weeks to get an appt with the plastic

surgeion I was referred to (he's supposed to be the best in the area

so I'm keeping my fingers crossed that he'll prescribe the band as

I've learned it works wonders for plagio and the face assymetry.)

Best of luck and keep us posted.

Smiles,

Karina & Kiara

> Hi ALL! I am so happy to find this site! At this time my

pediatrician

> has diagnosed my 9 month old max with plagio without

craniosynotosis.

> I am really looking for somebody to tell me that the asymmetry of

my

> baby's face will be fixed. We have an appt. with a neurosurgeon

next

> week. I'm not even sure why. Did anyone in this group have a child

> with more of a facial problem, than the head?

> My baby's eyes are so different, they also have skin folds in the

> corners, his forehead is lopsidded, his ears are different and not

in

> the same place, he just doesn't look right. Can it be fixed?

> We had an xray at my pediatrician's request. Is the xray accurate

in

> determining suture fusion? Do helmets or bands help fix faces?

> If anybody can answer any of my questions....THANK YOU!

>

>

> By the way, I have looked at all of the pictures and your babies

are

> all so beautiful.

[Guest guest]

My baby's eyes are so different, they also have skin folds in the

corners, his forehead is lopsidded, his ears are different and not in

the same place, he just doesn't look right. Can it be fixed?

Amy:

This is all very normal for plagio babies. I know that DOC Bands

can help to fix a lot of this stuff, but helmets vary so much that it's

hard to say. Check with your local provider. Also, if your

baby has torticollis (tight neck muscle causing the head to turn one way

or tilt), you should seek some physio therapy. This should help with

the facial asymmetry as well.

Welcome to the group!

Kendra

amy wrote:

Hi ALL! I am so happy to find this site! At this

time my pediatrician

has diagnosed my 9 month old max with plagio without craniosynotosis.

I am really looking for somebody to tell me that the asymmetry

of my

baby's face will be fixed. We have an appt. with a neurosurgeon

next

week. I'm not even sure why. Did anyone in this group have a child

with more of a facial problem, than the head?

My baby's eyes are so different, they also have skin folds in the

corners, his forehead is lopsidded, his ears are different and

not in

the same place, he just doesn't look right. Can it be fixed?

We had an xray at my pediatrician's request. Is the xray

accurate in

determining suture fusion? Do helmets or bands help fix faces?

If anybody can answer any of my questions....THANK YOU!

By the way, I have looked at all of the pictures and your babies

are

all so beautiful.

[Guest guest]

> We had a 3-D CT

> done and I don't know how that compares in accuracy to an x-ray, but I'll bet

> that the x-ray can show if the sutures are closed or open pretty well. Maybe

> the neuro will order a CT?

>

The CT Scan is the most accurate way to tell if the sutures are

open/closed. The key factor in getting either CT or X-ray films read,

is to have someone who KNOWS what they are looking for to view them

(i.e.: pediatric neurosurgeon)! So many babies have been misdiagnosed

because the person reading the films really doesn't know what to look

for.

Kendra

marcisch@... wrote:

> Hello and welcome!

>

> Hopefully you will get some of your questions answered when you have

> your

> appointment with your neuro. It is good to hear that your ped is so

> supportive. That is a rare instance for people in this egroup!! I also

> feel

> that my daughter's facial assymetry is more noticeable than her slight

>

> flatness to the side of her head. She is wearing a locally made helmet

> and

> has been in it for about 12 weeks. We have noticed some improvement in

> her

> facial assymetry, but not a whole lot. The amount of correction

> depends on a

> number of things. One of the big things is how much your child grows

> during

> the time he wears the device and how severe the assymetry is. Our

> orthotist

> tells us that the ears are the hardest to correct since ears are

> attached to

> muscles in the neck. (I think that is what he said) We have had some

> correction and we are hopeful that we will have even more. We had a

> 3-D CT

> done and I don't know how that compares in accuracy to an x-ray, but

> I'll bet

> that the x-ray can show if the sutures are closed or open pretty well.

> Maybe

> the neuro will order a CT?

>

> I'm glad you found this egroup. I don't know what I would have done

> without

> it. There isn't a question you can ask about plagio that someone here

> can't

> help you with! Please keep us posted and let us know how the appt.

> with the

> neuro goes.

>

> Marci (Mom to 1/12/00)

>

> eGroups Sponsor

[Choose 3 DVDs for $0.49 each!]

Choose 3 DVDs for $0.49 each!

>

>

[Guest guest]

I did not catch your name. My name is a, mothre of 14yo daughter with

CMT , She is not an equestrian however. I am an RN, OB is my area and

we live in Eugene, Oregon. I guess we are about 5 hours south of you. I am

sorry you had to give up your dental practice due to CMT, if your hands are

afflicted, I could fully understand. My daughter's hands and severly

affected. The orthopedic surgeon who was consulted about her knee, told me

she needed to see a hand specialist when we were done dealing with her knee.

Feel free to correspond with any questions you might have. There are many

people in this group who have children with CMt also. I do also beleive there

are some teens who loves horses as well.

Welcome.

a

[Guest guest]

In a message dated 1/27/01 12:09:26 PM Eastern Standard Time,

legendre@... writes:

<< Is this a good starting place? >>

Hello the House,

As good as it gets, I don't thing your going to find any place on

the web or for that matter any place else that will give you the abundance of

information that you will get from this site. You will receive the benefit

and the personal experience of a membership, (getting close to 400), that

covers all the variants of CMT, plus and endless number of professional sites

(Hospitals, Universities, Research, etc.) that are listed in the in the CMTus

archives. We are blessed with a moderator who is a visionary and has dared

dreamed that all of us together could bring enough attention, make enough

noise, that someday someone out there would find a cure for CMT. Yes, this

is a good place to start.

Welcome to you and yours----- E

[Guest guest]

In a message dated 1/27/2001 9:09:26 AM Pacific Standard Time,

legendre@... writes:

<< I'd like to talk with other health care professionals,

as well as moms of eight year old boys who have this.

Is this a good starting place?

>>

I have an 8 yr old boy with CMT. I also have a 11 yr old by with it.

[Guest guest]

Good luck . I can't help much. My son is 8 months and just started

the DOC band. I just wanted you to know i read your post and am thinking

about you and your family.

Heidi & Luke (Feb. 2)

[Guest guest]

,

I'm not in the same situation as you as my son was diagnosed at six

months with plagiocephaly. However, I was wondering that given your

son's age and current diagnosis, have you considered getting a second

opinion from another neurosurgeon? We've all worked with different

doctors (both good and bad). If you let us know where you're

located, perhaps someone could recommend some good local doctors who

have experience with this type of problem.

Good luck,

Lily

> Hello,

> My name is K. and I have a son, Chase who is 3 years old.

He

> was just diagnoses today with having plagiocephaly (pending a CT

scan

> to rule out craniostenosis or another brain disorder). I just

found

> this group and decided to join to see if there was anyone on the

> group who had an older child such as I do with this recent

> diagnosis? I am a little concerned that things were not taken care

> of when he was an infant. I have always been concerned, but never

> taken seriously by healthcare professionals about what could be

wrong

> with his head. When Chase was born, he was in fetal distress and

> when he finally made his appearance, he was in respiratory distress

> and had to be rescusitated. At 2 weeks of age, he did not show any

> evidence of having the normal reflexes that other babies had and

his

> Dr. at the time said that he was " Content to be lazy " . At 2 months

> of age the Dr. noticed that his anterior fontanel was almost

> completely closed. At 4-6 months of age you could not even feel

> any " soft spot " on top at all. He also had one side of the face a

> little larger than the other and his eyes were slightly

> asymmetrical. I did not know of cranyostenosis or plagio at the

time

> and had to " trust " the Dr., he did not seem too worried. Well,

since

> then, Chase went through months of developmental delays but now he

is

> a typical 3 year old(will be 4 in april). So, his ped where we

live

> now is concerned by the ridge on the top of his head and the

> asymmetry of his head and face. We saw a Neurosurgeon today and

had

> x-rays done. The Neurosurgeon said that he did not see too much

> wrong with the actual bone except for a mild-to-moderate

> plagiocephaly. He also said that he wanted a CT scan to rule out

> craniostenosis and he saw some concern with the " unaffected " side

of

> his head where his brain is ; there may be some pressure there and

> the CT scan will reveal this. I am sorry this is so long, but I

> just needed to get some advice and If anyone knows of anyone else

in

> my situation, with an " older " child just diagnosed I would love to

> talk to them to see what their experience was/is. Thanks for

> reading this far and Take Care. Hugs......

> K.

[Guest guest]

Sue,

It sure does sound like plagiocephaly with torticollis. I would most

certainly insist on a referral to a specialist (pediatric neurosurgeon or

pediatric plastic surgeon preferably). Your story sounds like so many of

ours! You will find all the support you need here as well as answers to all

of your questions!! Since your son is 8 months old I would aggresively pursue

the referral to a specialist. It is certainly not too late for treatment, but

the earlier you can start the more effective the treatment is.

Welcome to the group and keep us posted!!

Marci

[Guest guest]

Sue:

Our names are so close (mine is Sue Luck, and my son is !) -

How funny!!

As Marci already said, it sounds like plagio and tort. I am not familiar

with your medical system, but Kendra (the group moderator) is also from

Canada and can surely provide some help.

There are many links listed on this home page that can provide information.

Also look at the pictures of kids in the FILES section.

Hope you can find the help you need!

Sue Luck

mom to , DOC band graduate

Cleveland, OH

----- Original Message -----

From: Sue <suelucyk@...>

<Plagiocephaly >

Sent: Monday, February 05, 2001 10:03 AM

Subject: New member

> Hello all my name is Sue and I live in Ontario Canada. I am not sure

> if I " m in the right place or not bt after reading a few post I

> beleive I am. My is 8 months old. Over the past 5 months I

> have been concerned over the shape of his head, I've mentioned it

> everytime Davds went to see my family doc.. His response was " If

> you saw the shape of some kids heads you wouldn't be so concerned

> it's normal " . Well I don't think so! has a slightly crooked

> head that angles forward on his right side, like its misalighned with

> the rest of his head. When you look down at the top of his head it

> is really noticable. He also has a little flattening on that side

> which seems to gettiing worse. He also has what I beleive is a wry

> neck cause his head tilts to one side, also one side cheek, the right

> is bigger or fatter. You can really notice this when u look in a

> mirror, actually thats how I become concerned several months back

> when I placed him in front of a mirror.

> I live in a city that is very short on doctors and no one is taking

> new patients. My doc is gone for 2 weeks and I cant wait till he

> gets back so I can bring in some info I found on the net that

> reseambles so much and insist I get a second opion and a

> referral to see a specialist enough is enough.

> I just wannted to know do u all think that there may be a problem

> with the symtoms that I decribe about ?

> Thanks

> Sue Lucyk

> of Timmins Ontario

> Canada

>

>

>

>

[Guest guest]

Hi Sue!

I'm in Calgary, so hopefully I can help steer you in the right direction. It's not very often that we see Canadians on the board! We also have Colleen in Halifax, so now we're pretty much all over the country! )

It does sound like has plagio. How far are you from Toronto/Ottawa? Both cities have helmet programs (Not DOC Band). In Toronto, you would need to be referred to the Sick Kids Hospital. I don't have any other info. than that for there. For Ottawa, call Englehart (Dr. Venturyra) at 1-613-737-7350 ext. 5314 From what I understand, this helmet runs about $700. I'm not sure if it covered my OHIP or not.

It sounds like you've got some torticollis going on too. You need to see a physio therapist. Try to find one who works with infants. It's important to get this cleared up, as it can cause developmental delays. There is a group called torticolliskids too. Join them and see what they have to say.

Welcome to the group, and if I can be of any help at all, please let me know!

Kendra in Canada

----- Original Message -----

From: Sue

Plagiocephaly

Sent: Monday, February 05, 2001 7:03 AM

Subject: New member

Hello all my name is Sue and I live in Ontario Canada. I am not sure if I"m in the right place or not bt after reading a few post I beleive I am. My is 8 months old. Over the past 5 months I have been concerned over the shape of his head, I've mentioned it everytime Davds went to see my family doc.. His response was " If you saw the shape of some kids heads you wouldn't be so concerned it's normal". Well I don't think so! has a slightly crooked head that angles forward on his right side, like its misalighned with the rest of his head. When you look down at the top of his head it is really noticable. He also has a little flattening on that side which seems to gettiing worse. He also has what I beleive is a wry neck cause his head tilts to one side, also one side cheek, the right is bigger or fatter. You can really notice this when u look in a mirror, actually thats how I become concerned several months back when I placed him in front of a mirror. I live in a city that is very short on doctors and no one is taking new patients. My doc is gone for 2 weeks and I cant wait till he gets back so I can bring in some info I found on the net that reseambles so much and insist I get a second opion and a referral to see a specialist enough is enough. I just wannted to know do u all think that there may be a problem with the symtoms that I decribe about ?ThanksSue Lucykof Timmins OntarioCanada

[Guest guest]

Hi and welcome.. You found the right spot. Im not a doctor but sounds like

your child has torticollis (stiff neck) and positional plagiosphaly. My son

has both and uses the DOC band and has therapy for his neck..........my

advice would be to get as many opinions as you need to get this diaganosed.

The older the child the longer the therapy.......in most cases. Good luck

and stick with us.

Heidi & Luke (Feb. 2)

[Guest guest]

Glad you found us and HEY way to go on the good news. Your lucky to have an

" in " with your friend, many of us here would die for that. Does your son

have torticollis too? Is that why you see the Pediatric PT? Just

wondering........my son has plagio and tort and we are in a bind with finding

a decent PT in our area (AZ).

Best of luck to you,

Heidi & Luke

[Guest guest]

Welcome to the group, Chris!

Kendra in Canadawww.plagiocephaly.org/support...

----- Original Message -----

From: cdelsig@...

Plagiocephaly

Sent: Monday, March 05, 2001 6:02 PM

Subject: New Member

Hi all!My son has just started his DOC Band therapy. He has a mild-severe case of positional plagiotherapy. We are seeing two pediatric physical therapists in Cleveland, OH. We are their first plagiocephaly patients (their office just opened for this Feb. 5th this year).Matt was born in October and his birth was normal. He had a slightly molded head (his head circumference measured him in the 98th percentile, so it had to mold somewhat just to get out). The day after he was born, his head was not molded whatsoever, so the birthing can't be a causal factor. We blame the backsleeping and all the back time he got (he really didn't like being on his belly one bit; still doesn't like it, but he is a little more accepting). One of my wife's old high school friends works for Cranial Technologies in Atlanta. She was up for a little "Girl's Group" get-together with all the kids of all the gals. She noticed Matt's head there and e-mailed my wife once she got back to Atlanta. My wife researched online and we went in to talk to our pediatrician. She was very open to the idea and called the PT's we were going to see so she could learn more. She wants us to bring Matt in after-hours so she can see what's going on without it actually being an official visit (never hurts to be a friend of your pediatrician before she becomes your pediatrician)!Matt had some rubbing of the Band during week one, so we didn't have him wear it and it had to be altered. This, then is week one (provided everything goes well) and he should be back in it full-time tomorrow. The PT's think he'll only need 3 months of the Band.Enough of my windbagging. Chris

[Guest guest]

Welcome to the group. It sounds like you guys are doing GREAT with your band!

You do seem to have friends in the right places!! Just wanted to say welcome

and I'm glad you found us! There is a girl in this group that wants to know

about DOC treatment in Atlanta - maybe you could give her a word or two about

it!

Keep us posted!!

Marci (Mom to )

Oklahoma

[Guest guest]

Hi April and Welcome!!!

I am so glad that you found us! It is great that you already have the whole

thing underway and are getting ready to start down the road to a rounder head

- LOL!! What kind of orthotic device are you getting? A locally made helmet

or one of the bands? (STAR or DOC) Whichever kind you get you will lots of

other moms here who have the same kind!

Bri sounds like a real trooper - I can't believe she didn't cry during her

casting. That is AWESOME!!! When will you go in for your helmet fitting? I

hope you will keep us posted! Also, if you can we have a files section where

moms can set up folders with pictures of their babies! We would love to see

some pictures of Bri!

I'm glad you're here !

Marci (Mom to )

Oklahoma

[Guest guest]

Hi - so glad you joined us and so smart of you to research so that you can

help your baby. I am Amy, Max's mom. I also have a six year old daughter. I

have a ten year old daughter too. Max is 11 months old and wearing the

STARband since 2/19.

I haven't had any results yet but I am hoping.

Hope you post some pictures in the files section.

Glad to meet you.

Amy

[Guest guest]

Welcome April,

Great news about the casting. You will find wonderful support here.

I'm sure there are people from the New England area that will

respond. We are from the St. Louis area. Thank you for posting

about your experience.

and Sam

11months

> Hi my name is April and I am the proud mom of two wonderful girls.

> The oldes is 6 and the youngest is 7 mths. It is my youngest who

has

> the Plagiocephaly. We went yesterday to have her fitted for her

> helmet and the Dr. who made the cast told us that it would be very

> trumatic for both na and myself but that it didn't hurt her at

> all. Well as soon as he put the stocking over her face we all

> expected the worst but to our amazement she loved it. She smiled

all

> the way through the casting until he had to take off the cast &

> she only fussed a little at that. I can't tell you what a relief

> that was for all of us. The Dr. keapt telling us he had never had

a

> baby who didn't cry. Bri was born with her skull plates overlapping

> each other and Tort. after PT her Tort. is much better but it took

> this long for the Dr's to send her for x-rays to rule out

> craniosynistosis and thank god it wasn't. It was only through my

> research that we all became aware of Plagiocephaly and were able to

> get her in to get her helmet. I am very glad to have found this

> group and the caps site and would love to hear from other

families.

> Especially if there are any in the New England area. I havn't been

> able to find any groups or contacts in this area and I would love

to

> be able to help and get the word out to New Englanders about this

> condition.

[Guest guest]

Hi April!

We actually live in Virginia, but travel to the Connecticut CT in Clinton,

every other week. I am trying to get through all my e-mails (750 of them),

so sorry my reply is so late. I am originally from Connecticut and have

family there (Granby). What state are you in? Where did you go for her

helmet? You are so lucky na didn't cry. screamed and kicked Lynn

the whole time. is now 14 months old (she was 12 months at the time of

the casting).

Good Luck to you! And Welcome!

('s mom)

[Guest guest]

In a message dated 4/7/2001 7:00:43 PM Pacific Daylight Time,

dpy827@... writes:

> I grew up

> being told by Dr.'s that CMT only affected the extremities and wasn't too

> concerned about having a child. I figured I managed O.K., and was happy to

> have been given life. I didn't think it could be any worse than what mine

> was. Now, I have heard from the internet that other parts of your body can

> be affected, and possibly be life threatening. If any one has info. on

> this

> I would greatly appreciate it!

> Thanks,

> Dee

>

HI Dee, I am I have 5 kids 3 have CMT. I am 33.. You may want to look

into embryo selection or something like that. That way you don't have to

worry abt the CMT factor with your next baby. I think its nice to have

options.

[Guest guest]

Hi there!!!

Life threatening???

First time I hear this one... Where did you heard this info??

The only life threat that I see is from losing balance and falling a 10

floor building or making yourself bleed to death from a minor cut that you

don't feel :-) but you just have to take precaution, like anybody in real

life!

Has any of you here heard of a direct life threat caused by CMT? I'm

curious!!

Maxime

p.s: welcome to the group!!

>From: " DeShea Young " <dpy827@...>

>Reply-

>

>Subject: [] New Member

>Date: Sat, 07 Apr 2001 21:58:39 -0400

>

>Hi, my name is Dee. I am 25 and found out I had CMT when I was about 9

>years

>old. I inherited it from my fathers side of the family ( my parents

>divorced when I was around 6 mos. old). They act like it doesn't exist and

>never offered any information to my mom. Later (when I'm about 20) I find

>out that several of my distant relatives out of town also have it. I grew

>up mostly trying to hide my CMT from everyone because I hate being

>different

>from the " normal " people. My hands were the first thing to be affected

>with

>me. This was hard for me during H.S. because others are so judgemental (

>and

>it was obvious when I couldn't point or clap like everyone else). My legs

>and feet started after high school. And the worst thing to me is my

>balance- it is horrible! I've coped with the rest but this is really

>bothersome. I have a 22 mo. old son and have been married now for 5 years.

>My husband is wonderful about my CMT. We are currently thinking about

>another child but are concerned about the CMT being passed on. I grew up

>being told by Dr.'s that CMT only affected the extremities and wasn't too

>concerned about having a child. I figured I managed O.K., and was happy to

>have been given life. I didn't think it could be any worse than what mine

>was. Now, I have heard from the internet that other parts of your body can

>be affected, and possibly be life threatening. If any one has info. on

>this

>I would greatly appreciate it!

>Thanks,

>Dee

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