what would you do?

[Guest guest]

Lori keep it on you never know if and when they are going to grow so keep it

on. If you don't mind it and neither does your son I say go for it! It will

put your mind at ease no harm done only good and maybe even a rounder head.

Go with your heart-your doing great!

Beck

[Guest guest]

I would keep it on. While you may or may not see

anymore improvement if you took it off now you'd

probably always wonder " what if we'd left it on a few

more months ... "

--- lancerunje <lancerunje@...> wrote:

> Hello. My son is 19 months, and has had on his

> helmet for 9 months so

> far. We have seen moderate results. I am a little

> disappointed in our

> results, but I don't want to sound like I'm

> complaining because the

> helmet has been a very positive experience. Anyway,

> I know that

> between 18 and 22 months, a childs head drastically

> stops growing. So

> I can't decide to take it off now, or leave it on

> for 3 more months.

> I feel like we have a little window of opportunity,

> and we have come

> this far, I'd hate to stop if we could still see

> results. On the

> other hand, if it's pointless to keep it on longer,

> and we may see a

> very small result, would it be worth it. I'm leaning

> towards leaving

> it on until he is 22 months. I know that I should

> listen to myself,

> but I was wondering what some of you would do in my

> position. Would

> you keep going if you already put in 9 months, or

> would you stop.

> Also take into account that it does not bother me AT

> ALL to have his

> helmet on. Actually, when it's off, I feel like I

> have 2 different

> children. Thanks for any responses. Lori.

>

>

__________________________________________________

[Guest guest]

Hi Lori:

OOOH, that's a tuffy. Well, it sounds like your gut is saying " leave

it on " , so I would probably say go with your gut. I know that in my

situation I know that I will have to tell my daughter (as you will

your son) that I did everything I could to fix her plagiocephaly

because I love her so much. Right now it looks like I will be

driving 5 hours one-way to be able to do the DOC band as my gut is

telling me that I MIGHT see better results with an active band. Will

I for sure? We will never know. But I have to live with my decision

not to, and I can't. I want to be able to say " I did everything "

and mean it to a teenager who might be feeling sensative about her

looks. On the other hand, I have to stop myself and say " Am I doing

this because I want a " perfect " child? " I have searched my heart and

found that the answer is no. If my daughter gets no more improvement

I still have the joy of looking at a beautiful, bright, wonderful

baby that has an awsome future ahead of her. But, if she had crooked

teeth I would let her have braces. If she couldn't see well I would

let her have glasses. If she falls and gets a cut on her face I

would want a plastic surgeon, not a resident, to stitch it up. So, I

would still protect her looks/functioning in those circumstances, as

I'm sure you would too. This is the same thing. We are protecting

them as best as we can.

Just my thought. I know that whatever decision you make will be

right for you!

Kind regards,

, Rhiannon's mom

> Hello. My son is 19 months, and has had on his helmet for 9 months

so

> far. We have seen moderate results. I am a little disappointed in

our

> results, but I don't want to sound like I'm complaining because the

> helmet has been a very positive experience. Anyway, I know that

> between 18 and 22 months, a childs head drastically stops growing.

So

> I can't decide to take it off now, or leave it on for 3 more

months.

> I feel like we have a little window of opportunity, and we have

come

> this far, I'd hate to stop if we could still see results. On the

> other hand, if it's pointless to keep it on longer, and we may see

a

> very small result, would it be worth it. I'm leaning towards

leaving

> it on until he is 22 months. I know that I should listen to myself,

> but I was wondering what some of you would do in my position. Would

> you keep going if you already put in 9 months, or would you stop.

> Also take into account that it does not bother me AT ALL to have

his

> helmet on. Actually, when it's off, I feel like I have 2 different

> children. Thanks for any responses. Lori.

[Guest guest]

Hi Lori:

OOOH, that's a tuffy. Well, it sounds like your gut is saying " leave

it on " , so I would probably say go with your gut. I know that in my

situation I know that I will have to tell my daughter (as you will

your son) that I did everything I could to fix her plagiocephaly

because I love her so much. Right now it looks like I will be

driving 5 hours one-way to be able to do the DOC band as my gut is

telling me that I MIGHT see better results with an active band. Will

I for sure? We will never know. But I have to live with my decision

not to, and I can't. I want to be able to say " I did everything "

and mean it to a teenager who might be feeling sensative about her

looks. On the other hand, I have to stop myself and say " Am I doing

this because I want a " perfect " child? " I have searched my heart and

found that the answer is no. If my daughter gets no more improvement

I still have the joy of looking at a beautiful, bright, wonderful

baby that has an awsome future ahead of her. But, if she had crooked

teeth I would let her have braces. If she couldn't see well I would

let her have glasses. If she falls and gets a cut on her face I

would want a plastic surgeon, not a resident, to stitch it up. So, I

would still protect her looks/functioning in those circumstances, as

I'm sure you would too. This is the same thing. We are protecting

them as best as we can.

Just my thought. I know that whatever decision you make will be

right for you!

Kind regards,

, Rhiannon's mom

> Hello. My son is 19 months, and has had on his helmet for 9 months

so

> far. We have seen moderate results. I am a little disappointed in

our

> results, but I don't want to sound like I'm complaining because the

> helmet has been a very positive experience. Anyway, I know that

> between 18 and 22 months, a childs head drastically stops growing.

So

> I can't decide to take it off now, or leave it on for 3 more

months.

> I feel like we have a little window of opportunity, and we have

come

> this far, I'd hate to stop if we could still see results. On the

> other hand, if it's pointless to keep it on longer, and we may see

a

> very small result, would it be worth it. I'm leaning towards

leaving

> it on until he is 22 months. I know that I should listen to myself,

> but I was wondering what some of you would do in my position. Would

> you keep going if you already put in 9 months, or would you stop.

> Also take into account that it does not bother me AT ALL to have

his

> helmet on. Actually, when it's off, I feel like I have 2 different

> children. Thanks for any responses. Lori.

[Guest guest]

Lori-

I personally would keep it on as long as you are seeing results and

he fits in it. Especially since you are so concerned, you probably

will sleep better if you keep him in it! You might as well get all

the mileage you can out of the helmet!

Dane's mom (DOC Band 2/14)

> Hello. My son is 19 months, and has had on his helmet for 9 months

so

> far. We have seen moderate results. I am a little disappointed in

our

> results, but I don't want to sound like I'm complaining because

the

> helmet has been a very positive experience. Anyway, I know that

> between 18 and 22 months, a childs head drastically stops growing.

So

> I can't decide to take it off now, or leave it on for 3 more

months.

> I feel like we have a little window of opportunity, and we have

come

> this far, I'd hate to stop if we could still see results. On the

> other hand, if it's pointless to keep it on longer, and we may see

a

> very small result, would it be worth it. I'm leaning towards

leaving

> it on until he is 22 months. I know that I should listen to

myself,

> but I was wondering what some of you would do in my position.

Would

> you keep going if you already put in 9 months, or would you stop.

> Also take into account that it does not bother me AT ALL to have

his

> helmet on. Actually, when it's off, I feel like I have 2 different

> children. Thanks for any responses. Lori.

[Guest guest]

My son started at 9 months and is now 16 months. He wore his first

band 5 months and has been in his second for 2 months. He recently

went thru a big growth spurt and I have seen quite a few additional

changes during the last two months, nothing as dramatic as with the

first band but still improvement. I am going to keep in his

band as long as it still fits and he might get any possible

additional correction from it.

Candy, mom to (DOCband #1, 10/5/01, #2, 2/25/02)

land

> Hello. My son is 19 months, and has had on his helmet for 9 months

so

> far. We have seen moderate results. I am a little disappointed in

our

> results, but I don't want to sound like I'm complaining because the

> helmet has been a very positive experience. Anyway, I know that

> between 18 and 22 months, a childs head drastically stops growing.

So

> I can't decide to take it off now, or leave it on for 3 more

months.

> I feel like we have a little window of opportunity, and we have

come

> this far, I'd hate to stop if we could still see results. On the

> other hand, if it's pointless to keep it on longer, and we may see

a

> very small result, would it be worth it. I'm leaning towards

leaving

> it on until he is 22 months. I know that I should listen to myself,

> but I was wondering what some of you would do in my position. Would

> you keep going if you already put in 9 months, or would you stop.

> Also take into account that it does not bother me AT ALL to have

his

> helmet on. Actually, when it's off, I feel like I have 2 different

> children. Thanks for any responses. Lori.

[Guest guest]

Lori:

I would probably keep the helmet on at this point. You've come this

far, there is no point stopping now! Especially if it is still

fitting him ok. Hopefully he'll hit one more good growth spurt over

the next 3 mos & get some more correction. I am sure you're sick of

him wearing it, but I'm glad it doesn't bother you at all while he is

in it.

Good luck, let us know what you decide to do.

Debbie Abby's mom DOCGrad

MI

> Hello. My son is 19 months, and has had on his helmet for 9 months

so

> far. We have seen moderate results. I am a little disappointed in

our

> results, but I don't want to sound like I'm complaining because the

> helmet has been a very positive experience. Anyway, I know that

> between 18 and 22 months, a childs head drastically stops growing.

So

> I can't decide to take it off now, or leave it on for 3 more

months.

> I feel like we have a little window of opportunity, and we have

come

> this far, I'd hate to stop if we could still see results. On the

> other hand, if it's pointless to keep it on longer, and we may see

a

> very small result, would it be worth it. I'm leaning towards

leaving

> it on until he is 22 months. I know that I should listen to myself,

> but I was wondering what some of you would do in my position. Would

> you keep going if you already put in 9 months, or would you stop.

> Also take into account that it does not bother me AT ALL to have

his

> helmet on. Actually, when it's off, I feel like I have 2 different

> children. Thanks for any responses. Lori.

[Guest guest]

Lori,

I think that if it is still fitting well that I would leave it on. Since it

doesn't really bother you that much and obviously doesn't bother your baby

then why not? Go for all the correction you can get!

Marci (Mom to )

Oklahoma

[Guest guest]

Lori,

If your gut is telling you to leave it on for the remaining three

months, then leave it on. Remember, those mommy insticts rarely ever

steer us wrong! I know its been a long road for you, but there is an

end in sight and it will be here before you know it. Hang in there

Lori!

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> Hello. My son is 19 months, and has had on his helmet for 9 months

so

> far. We have seen moderate results. I am a little disappointed in

our

> results, but I don't want to sound like I'm complaining because the

> helmet has been a very positive experience. Anyway, I know that

> between 18 and 22 months, a childs head drastically stops growing.

So

> I can't decide to take it off now, or leave it on for 3 more

months.

> I feel like we have a little window of opportunity, and we have

come

> this far, I'd hate to stop if we could still see results. On the

> other hand, if it's pointless to keep it on longer, and we may see

a

> very small result, would it be worth it. I'm leaning towards

leaving

> it on until he is 22 months. I know that I should listen to myself,

> but I was wondering what some of you would do in my position. Would

> you keep going if you already put in 9 months, or would you stop.

> Also take into account that it does not bother me AT ALL to have

his

> helmet on. Actually, when it's off, I feel like I have 2 different

> children. Thanks for any responses. Lori.

[Guest guest]

Lori,

Boy, you are really in a tough spot. How is your son coping with the helmet

at this age? Have you seen results that would satisfy you at this point? 9

months seems a really long time, but what's 3 more at this point (looking

back I'm sure you'll say the 9 months flew by!). If your son is ok with

wearing it, I would say go for the extra mile and then you'll never say what

if later. It sounded from your post that you are leaning more towards

keeping it on- whatever the case- go with that mommy instinct- your gut will

tell you what the right thing to do is. Good luck to you and please let us

know what you decide- we're pulling for you on this tough one!!

' Mom

[Guest guest]

Today I had an odd thing happen to me.

I have a foot swelling problem as part of my CMT.

I had been on my feet most of the day getting ready for a graduation party.

Not to metion it was over 100* and heat also makes me swell.

At the store a women told me I was having a hard time walking and I was very

swollen. DUH! But she said it like this " Oh look you have a hard time

walking. Oh you look like your in pain. Oh look how swollen you are. " I thought

for a

minute about what to say to her. I just couldn't stand to tell her anything

personal about my life. So I told her I had M.S. and walked away.

Now I know your all ashamed of me for not passing the CMT information along .

What would you have done?

[Guest guest]

Very simple: " Thank you for your concern. " And gone on about my business.

[Guest guest]

,

We all have different levels of personal acceptance and boundaries.

However, others tend to " push " us for answers. The woman obviously saw

you were having a difficult time, but did nothing to offer you a chair,

or relief, or anything. And there are always rude people. People are

also afraid of what they don't know or don't understand. Granted, MS is

more widely known. I used to say the same thing. Now I say " I have CMT "

and if I have time I explain a bit about it. If I don't have time, I say

" I'm sorry, but I cannot talk right now " . No where is is written we must

share our personal lives with strangers - or even friends. Considering

it was so hot and you had been on your feet all day, I would have just

said " I have CMT " , left it at that, and gone home to rest.

Aw , how can I be ashamed of you? No way! Hope you get some rest

for your feet and hope it is not as hot today. ~ Gretchen

PS. I have often thought of having business size cards printed up with

basic CMT information on it, and when these situations arise, give out a

card with the info and a website or two.

[Guest guest]

Hi ,

Evil 'ole woman, that I am, <g> I would have said exactly what

you said to yourself..... " Duh!!! " She was probably trying to

be emphatic and not rude but merely succeeded in being ignorant.

)

I work in a huge corporation. I was in the restroom on a floor

different from where I work. A lady asked me if I was alright.

" Yes, why do you ask? " I replied. " Well, you looked like you

were having trouble walking " (Another duh moment <g>) " I'm

disabled but I'm just fine " I replied curtly. Silence. A

moment later.... " Sorry " . It's kind of like asking a stranger

when the baby's due. " No I'm just fat " would be a good reply.

LOL

IMO, you can't educate everyone. Not everyone is open to

learning. The curious and concerned I educate. The others I

blow off with a laugh.

St. Louis area

[Guest guest]

Huh. I've read a view responses to this, and I'm a little surprised by the

negativity, but maybe I'm just not getting it. If someone asked me if I was

having trouble, I'd probably assume they wanted to help, but maybe I'd be wrong!

I've been naive in that way.... not realizing people are nosey and just want

'the story.'

As far as informing the world about CMT, it seems like peoples' eyes glaze over

when I try to explain it, and ultimately I respond, " It's like MS, except MS is

autoimmune and CMT is genetic. " This makes me think.... maybe I should print up

some small flyers to distribute when people have questions! The written word

seems to hold more power !

Danita

[Guest guest]

In a message dated 6/10/2003 11:15:05 AM Pacific Daylight Time,

greytlady48@... writes:

> IMO, you can't educate everyone. Not everyone is open to

> learning. The curious and concerned I educate. The others I

> blow off with a laugh.

>

>

your right about this. Its not everyday I run into a woman like I met

yesterday. It was nice not to feel like I had to explain my personal business

to the President of the DUH club.

[Guest guest]

In a message dated 6/11/2003 9:32:47 AM Pacific Daylight Time,

jtwaddell@... writes:

> Some guy today asked me if I had diabetes in my foot. I said 'No'

> and nothing else but probably should have told him " You really

> don't want to be asking me about that. "

>

> -j

>

J that is one heck of a karma you have

[Guest guest]

, I'm glad that your toe is better now. What a nightmare. I hope

they let you switch to the other rheumy in the practice, but sometimes

they're funny about that. Sending positive thoughts your way.

Sue

On Tuesday, June 17, 2008, at 01:29 PM, McNally wrote:

> Hi Everyone, I just got home this morning from spending a full WEEK

> in the hospital over a big toe flare.

[Guest guest]

hi ,

I agree with the other responses, that you have a right to change doctors.

your response to your dr can be diplomatic as someone has already suggested....

to follow up with the other person who saw you in the hospital. It's too bad

someone you trusted just blew this off.

I was on remicade for a while and had immune problems while on it. I ended

up with pleurisy! twice. It sounds like something from the 50's and is

painful. It's an inflammation of the lung lining. Prednisone is the only thing

that helped, as it was a virus....large doses like 40 mg.

Anyway, I am off the remicade and won't go back on it. I take diclofenac and

5mg of prednisone a day to help my arthritis. Good luck by the way, I live in

PA also.

Jo-Ann

-------------- Original message --------------

From: " McNally " <McNacks@...>

Hi Everyone, I just got home this morning from spending a full WEEK in the

hospital over a big toe flare. Sunday a week ago I started to feel something

funny in my left big toe, Monday a week ago I had an important fumeral to go to

that I could not miss. That night I went to the primary, he thought it was a

spider bite and gave me a script for keflex and steriods, I advised thim that I

don't do steriods unless direly important and that I would hold off on them,

took the script for the keflex that day 2 times. Tuesday when I woke up my toe

was alot worse so I added the prednisone then, by Wednesday moring I was up at 4

am waiting for the dr office to open, I called at 9 and they told me to go to

the ER, at this point it looked like a potatoe with black spots and the redness

was spreading. I went to the ER, they admitted me, diagnosis seemed to be either

a spider bite, gout, ra flare or a skin infection. After a day of super strong

iv antibiotics the internist that I was assigned kne

w it wasn't a skin infection. My rheumy (who I have been with for 9 years now

and thought the world of) came to the hospital on thursday, marked in my record

book that I wasn't in my room and left. I was in the room from Wednesday to this

morning, only leaving for an MRI on Friday at 12 noon for 1 hour. Not only was I

there in the room on thursday but so was my husband. I was so hurt when I found

out that I can't even put it in words, I honestly thought this doc was the tops.

The internist was wonderful but was looking for a confirmation from the rheumy

that it was a flare, the MRI on firday showed synovial inflamation, I had

another rheumy from the office, another partner come in friday, saturday and

sunday and say everyday that he didn't think it was RA related. The internist

finally started iv steriods on saturday night and the turnaround began, I was

able to leave today, the toe looks alot better and feels better too, I'll be on

steriods for another 10 days along with the antib

iotic. Yesterday I had another rheumy from the office that came in, looked at

me, said " you know this is ra related " and I was so releaved, I knew it, the

jerk over the weekend is the only one who didn't. My question, I am so

disappointed you can't believe in my rheumy, I'd like to change to the rheumy

that I met yesterday, same practice, just a different doctor. We had discussed

how every time I take Remicade, I end up with a problem, small or large

afterwards, he said he'd have me off it then (my doc just wanted to increase it)

and on Rituxan, has anyone tried that yet? I called today because I need to make

a follow up appt for 2 weeks from now and they have to ask my old rheumy if I

can go to the new guy, stinks doesn't it. I'd appreciate your comments. Thank

you, in pa

[Guest guest]

Jo-Ann, where in PA, I'm right north of Philly.

Re: [ ] what would you do?

hi ,

I agree with the other responses, that you have a right to change doctors.

your response to your dr can be diplomatic as someone has already suggested....

to follow up with the other person who saw you in the hospital. It's too bad

someone you trusted just blew this off.

I was on remicade for a while and had immune problems while on it. I ended up

with pleurisy! twice. It sounds like something from the 50's and is painful.

It's an inflammation of the lung lining. Prednisone is the only thing that

helped, as it was a virus....large doses like 40 mg.

Anyway, I am off the remicade and won't go back on it. I take diclofenac and

5mg of prednisone a day to help my arthritis. Good luck by the way, I live in PA

also.

Jo-Ann

-------------- Original message --------------

From: " McNally " <McNacks@...>

Hi Everyone, I just got home this morning from spending a full WEEK in the

hospital over a big toe flare. Sunday a week ago I started to feel something

funny in my left big toe, Monday a week ago I had an important fumeral to go to

that I could not miss. That night I went to the primary, he thought it was a

spider bite and gave me a script for keflex and steriods, I advised thim that I

don't do steriods unless direly important and that I would hold off on them,

took the script for the keflex that day 2 times. Tuesday when I woke up my toe

was alot worse so I added the prednisone then, by Wednesday moring I was up at 4

am waiting for the dr office to open, I called at 9 and they told me to go to

the ER, at this point it looked like a potatoe with black spots and the redness

was spreading. I went to the ER, they admitted me, diagnosis seemed to be either

a spider bite, gout, ra flare or a skin infection. After a day of super strong

iv antibiotics the internist that I was assigned kne

w it wasn't a skin infection. My rheumy (who I have been with for 9 years now

and thought the world of) came to the hospital on thursday, marked in my record

book that I wasn't in my room and left. I was in the room from Wednesday to this

morning, only leaving for an MRI on Friday at 12 noon for 1 hour. Not only was I

there in the room on thursday but so was my husband. I was so hurt when I found

out that I can't even put it in words, I honestly thought this doc was the tops.

The internist was wonderful but was looking for a confirmation from the rheumy

that it was a flare, the MRI on firday showed synovial inflamation, I had

another rheumy from the office, another partner come in friday, saturday and

sunday and say everyday that he didn't think it was RA related. The internist

finally started iv steriods on saturday night and the turnaround began, I was

able to leave today, the toe looks alot better and feels better too, I'll be on

steriods for another 10 days along with the antib

iotic. Yesterday I had another rheumy from the office that came in, looked at

me, said " you know this is ra related " and I was so releaved, I knew it, the

jerk over the weekend is the only one who didn't. My question, I am so

disappointed you can't believe in my rheumy, I'd like to change to the rheumy

that I met yesterday, same practice, just a different doctor. We had discussed

how every time I take Remicade, I end up with a problem, small or large

afterwards, he said he'd have me off it then (my doc just wanted to increase it)

and on Rituxan, has anyone tried that yet? I called today because I need to make

a follow up appt for 2 weeks from now and they have to ask my old rheumy if I

can go to the new guy, stinks doesn't it. I'd appreciate your comments. Thank

you, in pa

[Guest guest]

I'm west of Philly near Pottstown

--

Jo-Ann

--------- Re: [ ] what would you do?

hi ,

I agree with the other responses, that you have a right to change doctors. your

response to your dr can be diplomatic as someone has already suggested.... to

follow up with the other person who saw you in the hospital. It's too bad

someone you trusted just blew this off.

I was on remicade for a while and had immune problems while on it. I ended up

with pleurisy! twice. It sounds like something from the 50's and is painful.

It's an inflammation of the lung lining. Prednisone is the only thing that

helped, as it was a virus....large doses like 40 mg.

Anyway, I am off the remicade and won't go back on it. I take diclofenac and 5mg

of prednisone a day to help my arthritis. Good luck by the way, I live in PA

also.

Jo-Ann

-------------- Original message --------------

From: " McNally " <McNacks@...>

Hi Everyone, I just got home this morning from spending a full WEEK in the

hospital over a big toe flare. Sunday a week ago I started to feel something

funny in my left big toe, Monday a week ago I had an important fumeral to go to

that I could not miss. That night I went to the primary, he thought it was a

spider bite and gave me a script for keflex and steriods, I advised thim that I

don't do steriods unless direly important and that I would hold off on them,

took the script for the keflex that day 2 times. Tuesday when I woke up my toe

was alot worse so I added the prednisone then, by Wednesday moring I was up at 4

am waiting for the dr office to open, I called at 9 and they told me to go to

the ER, at this point it looked like a potatoe with black spots and the redness

was spreading. I went to the ER, they admitted me, diagnosis seemed to be either

a spider bite, gout, ra flare or a skin infection. After a day of super strong

iv antibiotics the internist that I was assigned kne

w it wasn't a skin infection. My rheumy (who I have been with for 9 years now

and thought the world of) came to the hospital on thursday, marked in my record

book that I wasn't in my room and left. I was in the room from Wednesday to this

morning, only leaving for an MRI on Friday at 12 noon for 1 hour. Not only was I

there in the room on thursday but so was my husband. I was so hurt when I found

out that I can't even put it in words, I honestly thought this doc was the tops.

The internist was wonderful but was looking for a confirmation from the rheumy

that it was a flare, the MRI on firday showed synovial inflamation, I had

another rheumy from the office, another partner come in friday, saturday and

sunday and say everyday that he didn't think it was RA related. The internist

finally started iv steriods on saturday night and the turnaround began, I was

able to leave today, the toe looks alot better and feels better too, I'll be on

steriods for another 10 days along with the antib

iotic. Yesterday I had another rheumy from the office that came in, looked at

me, said " you know this is ra related " and I was so releaved, I knew it, the

jerk over the weekend is the only one who didn't. My question, I am so

disappointed you can't believe in my rheumy, I'd like to change to the rheumy

that I met yesterday, same practice, just a different doctor. We had discussed

how every time I take Remicade, I end up with a problem, small or large

afterwards, he said he'd have me off it then (my doc just wanted to increase it)

and on Rituxan, has anyone tried that yet? I called today because I need to make

a follow up appt for 2 weeks from now and they have to ask my old rheumy if I

can go to the new guy, stinks doesn't it. I'd appreciate your comments. Thank

you, in pa