Need Advice

[Guest guest]

I was glad you went to the ER and got checked out, and that you are fine.  I

hope you continue to feel better each day.

I always say there is no rest for the weary.  Take care of yourself and rest

when you can.

 

Hugs,

 

Barbara

From: tiredtaz <tiredtaz@...>

Subject: [ ] Re: Need advice

Date: Monday, October 5, 2009, 6:03 AM

 

Thanks for the replies... When my husband came home he felt that it would be a

good idea to get checked out, so we went to the ER... Six hours later and what

felt like a million tests, they couldn't find anything other then elevated white

blood cells... My heart rate was at a pretty constant 105 at rest and the second

I tried to move it would shoot up to 130... They seemed concerned about this at

first, and then decided that the tests didn't come back with anything so I must

be fine. The Doctor says its probably due to lack of exercise. A--hole! I get

around plenty and I try very hard to stay as active as the pain allows and most

of the time I walk through the pain too... I really can't stand some people!

Needless to say, I feel a little bit better this morning, I'm not nearly as out

of breath as I was. So, I guess its business as usual. And once again, no

answers for the weary!

Thanks again for the support..

Bonnie

>

> Hi Bonnie,

>

> I would put a call in to the rheumy NOW, if I really felt it was serious I

would go to the ER, what could it hurt if you have insurance.

>

> I did Remicade for a year, didn't agree with me for other reasons and didn't

really help much. I've also been down the kidney stone lane and boy, that's

something, you don't know how to spell pain till you've had a stone.

>

> Just my 2 cents,

>

> in PA

> [ ] Need advice

>

>

> I've got a problem... or at least I think I do...

> I had my first Remicade infusion on Wednesday 9/30.... That night I ended up

in the emergency room bent over in pain... Turned out to be Kidney stones... I

passed the ones on my right side and I'm still attempting to pass the ones on

the left...

> Anyway, I woke up yesterday very weak but pushed myself to shower and continue

to move as I had promised my 13 yr old daughter to take her shopping. I did

however call in for re-enforcements by asking my mother to drive us to the

mall.. We made a fairly quick trip and I took a two hour nap when we got home...

(I rarely take naps).

> Last night, I slept better then I had in months and woke up refreshed.

> However, I quickly noticed that I can hardly move without my heart beat racing

and becoming out of breath very quickly. Even at rest after moving from one

chair to the next, I feel as if I just ran a tri-athalon!

> I'm very afraid as this is very unusual and I don't know what to do...

> Please send advice...

> Bonnie

>

>

>

>

>

>

[Guest guest]

I went to my Rhuemy last night, and he thinks I have what is called (spelling

wrong) Teizie. (inflammation of the cartlidge around the chess and ribs.)

He is also sending me to a cardiologist so I can get an echo and a breathing

test done.

So, it sounds like I'm back to the testing game again...

Thanks for all your support

Bonnie

>

> I've got a problem... or at least I think I do...

> I had my first Remicade infusion on Wednesday 9/30.... That night I ended up

in the emergency room bent over in pain... Turned out to be Kidney stones... I

passed the ones on my right side and I'm still attempting to pass the ones on

the left...

> Anyway, I woke up yesterday very weak but pushed myself to shower and continue

to move as I had promised my 13 yr old daughter to take her shopping. I did

however call in for re-enforcements by asking my mother to drive us to the

mall.. We made a fairly quick trip and I took a two hour nap when we got home...

(I rarely take naps).

> Last night, I slept better then I had in months and woke up refreshed.

> However, I quickly noticed that I can hardly move without my heart beat racing

and becoming out of breath very quickly. Even at rest after moving from one

chair to the next, I feel as if I just ran a tri-athalon!

> I'm very afraid as this is very unusual and I don't know what to do...

> Please send advice...

> Bonnie

>

>

>

>

>

>

>

>

[Guest guest]

Good for you friend!!! You are one step closer to getting the problem handled! I

am sorry that it all sounds kinda serious - don't be afraid - I, myself, have

had some kinda scary " diagnosis' " made lately,  but the best thing IS - it's

being handled! You are being referred to a specialist that will take good care

of you! I am so pleased that you are getting something done! Sometimes, as sorry

as it sounds, you gotta take your own health into your own hands to make

something happen. Good for you Bonnie and I hope and pray that everything  goes

the best that it can be! My thoughts & prayers are with you friend!

in SC

 

PS I just thought about this - at some point did you do something strenious that

you ordinarily wouldn't think anything of???? The reason I ask, is that several

years ago - I was traveling (at the time I was General Mgr of a Mall & was asked

to visit over a one week time several other malls in the Penn area) and had to

move suit cases from one place to another, every single night. I have always

exercised - moderately - whether at a gym or on my own------- Several days after

returning home, I started having shortness of breath & my chest hurt. My hubby

was out of the country so I freaked. I drove myself to the hospital, yada, yada,

yada, and after several hours in the ER and many EKG's & gosh who knows what

else!!! The ER doc deteremined that I had strained the muscle surrounding my

heart. It all stemmed from the crap load of girl stuff I lugged from hotel to

hotel over a week period!! How embarrassing is THAT????????????  If nothing

else, I hope I made

you laugh.  The moral is, get checked out, make sure the problems you are

having ARE nothing but something that can be explained easily. I wish the best

for you!!!! It's OK to laugh at me now!!!

 

From: tiredtaz <tiredtaz@...>

Subject: [ ] Re: Need advice

Date: Wednesday, October 7, 2009, 5:46 PM

 

I went to my Rhuemy last night, and he thinks I have what is called (spelling

wrong) Teizie. (inflammation of the cartlidge around the chess and ribs.)

He is also sending me to a cardiologist so I can get an echo and a breathing

test done.

So, it sounds like I'm back to the testing game again...

Thanks for all your support

Bonnie

>

> I've got a problem... or at least I think I do...

> I had my first Remicade infusion on Wednesday 9/30.... That night I ended up

in the emergency room bent over in pain... Turned out to be Kidney stones... I

passed the ones on my right side and I'm still attempting to pass the ones on

the left...

> Anyway, I woke up yesterday very weak but pushed myself to shower and continue

to move as I had promised my 13 yr old daughter to take her shopping. I did

however call in for re-enforcements by asking my mother to drive us to the

mall.. We made a fairly quick trip and I took a two hour nap when we got home...

(I rarely take naps).

> Last night, I slept better then I had in months and woke up refreshed.

> However, I quickly noticed that I can hardly move without my heart beat racing

and becoming out of breath very quickly. Even at rest after moving from one

chair to the next, I feel as if I just ran a tri-athalon!

> I'm very afraid as this is very unusual and I don't know what to do...

> Please send advice...

> Bonnie

>

>

>

>

>

>

>

>

[Guest guest]

,

I did get a little giggle... Thanks for the suggestion. Now that I think about

it, I went shopping with my mother to buy luggage the day before all these

symptoms... I really didn't lift much weight, but I was stretching to get a

couple off the top shelf. I'm going to cross my fingers and pray that this is

all that happened. Perhaps I stretched just a little too much and this will all

be history in a couple of weeks.

You've made me feel much better... I'm going to think positive and hope/pray

for the lesser of the evils..

Thanks

Bonnie

> >

> > I've got a problem... or at least I think I do...

> > I had my first Remicade infusion on Wednesday 9/30.... That night I ended up

in the emergency room bent over in pain... Turned out to be Kidney stones... I

passed the ones on my right side and I'm still attempting to pass the ones on

the left...

> > Anyway, I woke up yesterday very weak but pushed myself to shower and

continue to move as I had promised my 13 yr old daughter to take her shopping. I

did however call in for re-enforcements by asking my mother to drive us to the

mall.. We made a fairly quick trip and I took a two hour nap when we got home...

(I rarely take naps).

> > Last night, I slept better then I had in months and woke up refreshed.

> > However, I quickly noticed that I can hardly move without my heart beat

racing and becoming out of breath very quickly. Even at rest after moving from

one chair to the next, I feel as if I just ran a tri-athalon!

> > I'm very afraid as this is very unusual and I don't know what to do...

> > Please send advice...

> > Bonnie

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Bonnie:  I read your post and I sure hope you will feel better soon.  I loved

'a post to you, and had a good laugh.  You probably did strain yourself

looking and lifting luggage.  Sometines the simple things cause us the most pain

and problems.

 

Take care of yourself, and I hope you will be all better soon.  Get lots of rest

when you can.

 

Think about you a lot.

 

Hugs,

 

Barbara

From: tiredtaz <tiredtaz@...>

Subject: [ ] Re: Need advice

Date: Thursday, October 8, 2009, 7:12 AM

 

,

I did get a little giggle... Thanks for the suggestion. Now that I think about

it, I went shopping with my mother to buy luggage the day before all these

symptoms... I really didn't lift much weight, but I was stretching to get a

couple off the top shelf. I'm going to cross my fingers and pray that this is

all that happened. Perhaps I stretched just a little too much and this will all

be history in a couple of weeks.

You've made me feel much better... I'm going to think positive and hope/pray for

the lesser of the evils..

Thanks

Bonnie

> >

> > I've got a problem... or at least I think I do...

> > I had my first Remicade infusion on Wednesday 9/30.... That night I ended up

in the emergency room bent over in pain... Turned out to be Kidney stones... I

passed the ones on my right side and I'm still attempting to pass the ones on

the left...

> > Anyway, I woke up yesterday very weak but pushed myself to shower and

continue to move as I had promised my 13 yr old daughter to take her shopping. I

did however call in for re-enforcements by asking my mother to drive us to the

mall.. We made a fairly quick trip and I took a two hour nap when we got home...

(I rarely take naps).

> > Last night, I slept better then I had in months and woke up refreshed.

> > However, I quickly noticed that I can hardly move without my heart beat

racing and becoming out of breath very quickly. Even at rest after moving from

one chair to the next, I feel as if I just ran a tri-athalon!

> > I'm very afraid as this is very unusual and I don't know what to do...

> > Please send advice...

> > Bonnie

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Isn't it your legal right to ask for another therapist to do an evaluation on

him and what he needs if you aren't happy with what the school district is

saying? I thought this was the case but am not positive because I haven't been

through the IEP process.

I am about to fight this battle myself (first IEP, my son is 3). I already

know that the school district does not want to provide any oral motor.

However, on his results he scored at 2% on the oral motor planning. Was this

part of his review? Did they actually look at the oral motor? I am

blessed that they did and he scored so low because i plan to use this in my

arguments as to why he needs to have oral motor as part of his goals. My son

has dysarthia (hypotonia of face) and I completely understand your need for

this. It makes such a huge difference. Please keep us posted on how this

all turns out for you. I'll pray!

[ ] Need advice

My 3 1/2 year old son has hypotonia and severe oral motor issues. He speaks 4-5

word sentences but with obvious errors so only people familiar with him will

know what he is saying. He is currently receiving 1/2 hour speech two times a

week (one individual and one group). As recommended by his neurologist, I just

met with the IEP team and requested for an additional individual session with

Prompt. They flatly denied the extra session stating that oral motor exercises

and Prompt technique does not go hand in hand. Incidentally my son's speech

therapist never shows up to any of these meetings. I've rescheduled another

meeting next week and hopefully she will not have another family emergency.

As the neurologist states, my son is just not getting enough speech therapy and

Prompt will be beneficial to him. I need some advice on how to convince the

school of this.

Thank you in advance.

[Guest guest]

Do u have that in writing frm your sons doctor?

Sent from my Verizon Wireless BlackBerry

[ ] Need advice

My 3 1/2 year old son has hypotonia and severe oral motor issues. He speaks 4-5

word sentences but with obvious errors so only people familiar with him will

know what he is saying. He is currently receiving 1/2 hour speech two times a

week (one individual and one group). As recommended by his neurologist, I just

met with the IEP team and requested for an additional individual session with

Prompt. They flatly denied the extra session stating that oral motor exercises

and Prompt technique does not go hand in hand. Incidentally my son's speech

therapist never shows up to any of these meetings. I've rescheduled another

meeting next week and hopefully she will not have another family emergency.

As the neurologist states, my son is just not getting enough speech therapy and

Prompt will be beneficial to him. I need some advice on how to convince the

school of this.

Thank you in advance.

[Guest guest]

Yes, I have a very detailed letter from my son's doctor (Dr. Agin). The school

argued that they can only help from an academic viewpoint and not from the

medical viewpoint. Then I said that we need to help with the medical issues so

that he can do well academically. Now they are claiming that there is no

therapist trained in Prompt. And I have to try and be nice to these losers

because I want my son and my daughter to be treated fairly -- they both go to

the same school.

>

> Do u have that in writing frm your sons doctor?

> Sent from my Verizon Wireless BlackBerry

>

> [ ] Need advice

>

> My 3 1/2 year old son has hypotonia and severe oral motor issues. He speaks

4-5 word sentences but with obvious errors so only people familiar with him will

know what he is saying. He is currently receiving 1/2 hour speech two times a

week (one individual and one group). As recommended by his neurologist, I just

met with the IEP team and requested for an additional individual session with

Prompt. They flatly denied the extra session stating that oral motor exercises

and Prompt technique does not go hand in hand. Incidentally my son's speech

therapist never shows up to any of these meetings. I've rescheduled another

meeting next week and hopefully she will not have another family emergency.

>

> As the neurologist states, my son is just not getting enough speech therapy

and Prompt will be beneficial to him. I need some advice on how to convince the

school of this.

>

> Thank you in advance.

>

>

>

>

>

[Guest guest]

Tell them based on the dr recommendations you'd like another speech eval-thru

them so he can be re-evaluated and if his delays have changed--than they'd need

to increase his speech sessions. You need to show how his speech would affect

his ability to learn-do you have iq testing and psychological testing to go on

also?

>

> Yes, I have a very detailed letter from my son's doctor (Dr. Agin). The

school argued that they can only help from an academic viewpoint and not from

the medical viewpoint. Then I said that we need to help with the medical issues

so that he can do well academically. Now they are claiming that there is no

therapist trained in Prompt. And I have to try and be nice to these losers

because I want my son and my daughter to be treated fairly -- they both go to

the same school.

>

>

[Guest guest]

Hi,

My SD wrote in my son's IEP that it is recommended for the ST to use prompt

therapy, but we had to find the therapist on our own. Not sure where you live

and how it works there. I must say that it was very hard to find a good prompt

therapist, but his ST were trained in prompt. In addition we paid for a once a

week prompt certified therapist who could also direct the other ST what to work

on.

This year we were lucky and found a prompt certified therapist who works on CPSE

cases.

Did you officially submit Dr Agin's recommendation to the CPSE team in writting,

asking them to add the report to your son's official record? If not you should

fax it to them.

I would also try to find an advocate to help you. Also maybe you should not

rely too much on your ST as they are paid through the SD and there have been

cases of people loosing jobs if they didn't support the school's point.

In the meantime try to find a private prompt therapist if you can.

GL,

Nati

[Guest guest]

There is basically no way to treat a severely apraxic child without a

prompt-trained SLP. I know -- I have two Apraxic children. You need a VERY

strongly worded letter from your neurologist, stating what your child will

need in therapy to be able to improve and have a chance of Kinder readiness

by 5-6. He needs to specify that you need 3-4 hours of speech with an

Apraxia specialist that is prompt-trained. Also, I'd recommend that you get

on the Internet and print out everything you can. Go to Super Duper

Publications, for sure the " Real Little Mermaid " article from the Cherub

Facebook page. Your can subtly let your IEP team know that they have real

liability exposure if they don't make huge changes. You also need to find a

private speech therapist in your area that is pompt-trained and ask for

reimbursement. If your school speech teacher is not appropriately trained,

and she attempts to prompt and presses on the wrong muscles, she is DAMAGING

your child. You need to get really tough. And two half hour sessions are a

joke for a kid with Apraxia -- he won't improve hardly at all. LAUSD is

reimbursing me for most of the cost of 3 hours per week for a private

therapist (as they had to admit that they don't have SLPs trained to treat

Apraxic children) and I add another hour which I get paid for by Blue

Shield. Again, you need a strongly written letter from your doctor. Keep in

mind that the school likely does not have a medical standard -- but hey are

obligated to use proven, reasonable efforts to help your child be able to

succeed in school. They also typically have obligations to help your child

socialize appropriately, as that is needed to succeed in school. Children

that can't communicate don't learn to socialize appropriately. Your child

probably needs a behavioral shadow at school to help him interact with the

other kids. Go on-line, look at Kindergarten readiness lists -- and figure

out what your child will NOT be doing in a year due to your school districts

negligence. Fight!!!

[Guest guest]

I would go for it with Cranial Technologies. We were out of network as well and will end up paying much more than we would have at our local location (Hanger). CT knows what they are doing and it's the best way to go if you can afford it.

From: luvmykids627 <rrurcino@...>Subject: NEED ADVICEPlagiocephaly Date: Thursday, November 19, 2009, 1:27 PM

Hi! I'm new to this message board. I just found out my daugther needs cranial re-shaping. My insurance will cover a helmet through Ballert but will not cover a DOC Band. However, Cranial Technologies is going to give me a discount. So, it's free with Ballert or $2,000 dollars with Cranial Technologies. From what I'm reading, DOC Bands are better and those with helmets end up at Cranial TEchnologies for a DOC Band anyway. Does anyone have any advice for me? My daugther is at the perfect age (4 months) to get a DOC Band (had a consultation today) which will most likely correct her plagiocephaly and brachycephaly in approximately 3 months.Thanks a Lot!!!

[Guest guest]

Hello-

My son is 6 months and just got his Starband. Im starting to hear a lot about

these DocBands-but I dont think we live near a facility that has them. We are

30 min from Starband-My insurance covered about half the cost. The Starband is

doing well I guess but I do like the looks of the DocBands!! Its been really

hard on me-i feel like my son is depressed with his band on! I wish they would

let you try them out first before purchasing them!! Well good luck to you and

keep us posted on where you go for your band!!!

Thanks for sharing!

>

> Hi! I'm new to this message board. I just found out my daugther needs

cranial re-shaping. My insurance will cover a helmet through Ballert but will

not cover a DOC Band. However, Cranial Technologies is going to give me a

discount. So, it's free with Ballert or $2,000 dollars with Cranial

Technologies. From what I'm reading, DOC Bands are better and those with

helmets end up at Cranial TEchnologies for a DOC Band anyway. Does anyone have

any advice for me? My daugther is at the perfect age (4 months) to get a DOC

Band (had a consultation today) which will most likely correct her plagiocephaly

and brachycephaly in approximately 3 months.

>

> Thanks a Lot!!!

>

[Guest guest]

Thanks so much for your help! I think I am going to stick with Cranial Technologies. I've heard they are the best! My daugther only has one head for the rest of her life so it's definitely worth the money!

From: luvmykids627 <rrurcinosbcglobal (DOT) net>Subject: NEED ADVICEPlagiocephalyDate: Thursday, November 19, 2009, 1:27 PM

Hi! I'm new to this message board. I just found out my daugther needs cranial re-shaping. My insurance will cover a helmet through Ballert but will not cover a DOC Band. However, Cranial Technologies is going to give me a discount. So, it's free with Ballert or $2,000 dollars with Cranial Technologies. From what I'm reading, DOC Bands are better and those with helmets end up at Cranial TEchnologies for a DOC Band anyway. Does anyone have any advice for me? My daugther is at the perfect age (4 months) to get a DOC Band (had a consultation today) which will most likely correct her plagiocephaly and brachycephaly in approximately 3 months.Thanks a Lot!!!

[Guest guest]

Thanks for your advice! I'm going to stick with Cranial Technologies as I've heard wonderful things about them. Now I just have to wait for a call to schedule her first appointment. I will keep everyone updated. I'm so glad there is a site where I can discuss these things with other moms! Thanks!

From: kellyk_00 <kellyk_00@...>Subject: Re: NEED ADVICEPlagiocephaly Date: Thursday, November 19, 2009, 7:37 PM

Hello-My son is 6 months and just got his Starband. Im starting to hear a lot about these DocBands-but I dont think we live near a facility that has them. We are 30 min from Starband-My insurance covered about half the cost. The Starband is doing well I guess but I do like the looks of the DocBands!! Its been really hard on me-i feel like my son is depressed with his band on! I wish they would let you try them out first before purchasing them!! Well good luck to you and keep us posted on where you go for your band!!!Thanks for sharing!>> Hi! I'm new to this message board. I just found out my daugther needs cranial re-shaping. My insurance will cover a helmet through Ballert

but will not cover a DOC Band. However, Cranial Technologies is going to give me a discount. So, it's free with Ballert or $2,000 dollars with Cranial Technologies. From what I'm reading, DOC Bands are better and those with helmets end up at Cranial TEchnologies for a DOC Band anyway. Does anyone have any advice for me? My daugther is at the perfect age (4 months) to get a DOC Band (had a consultation today) which will most likely correct her plagiocephaly and brachycephaly in approximately 3 months.> > Thanks a Lot!!!>

[Guest guest]

Hi Jan,

Your story sounds almost identical to mine. I also knew from a

young age that something was wrong, but wasn't until my 30s I was

diagnosed and now I am 52 and with the knowledge we have about CMT I have a

better understanding on how to cope with things. My Mother also was the

carrier.

My sister has it too. My children, one has CMT and one shows no signs. My

Grand daughter is flat footed and so is her father so hard to tell if she has

CMT. And she gets along just fine. My daughter is aware of the fact that she

could have CMT. But she feels, iit isn't bothering her leave it alone.

I grew up just fine and so did my son and we do have all the

symptoms of CMT. Pain, foot and and problems and all the rest that goes with

it.

When my son was born and I saw his delay in somethings and his unbalance walk.

I figure he was just like me and we were both clumsy. I had no idea there was a

name for it. I know I tried harder to compensate and to keep up with the

other children. So I am happy I didn't know then.

However, I wish I knew when my son was small. I would have done more to seek

out help. Such as inserts for his shoes and maybe even be able to explain in

his school years why he couldn't keep up physically. But he tells me he had a

great child hood and that it wouldn't have made a difference. Like me he just

tried harder to fit in.

Because I wish I knew the info for my son, I would definitely tell your niece

and be prepared with information. CMT varies in so many degrees it probably

will be helpful to her to know all about

it. She might be suffering in pain in silence thinking that there is

nothing she can do about her feet and doesn't want to complain about pain. And

her children may need help eventually and she then will know where to turn.

Well I hope this helps some.

Carol

[Guest guest]

In my experience people like to stay in denial. It really upsets them to hear

that they may have your disease. I would tell her about CMT and that her Mom may

have had it. Then I would wait it out. If she develops symptoms and needs a

doctor she will remember that CMT is genetic and call you.

[Guest guest]

Jan,

Yes, let your niece know - but let her know by sharing about * your story *

with CMT. You may want to have a brochure or past newsletter in your bag to

offer her. Most importantly early intervention in children can make a huge

difference in children's lives.

Perhaps invite her to lunch at a nice place - someplace non-threatening and

pleasant, where it is just the 2 of you, where you can have a long conversation.

Gretchen

[Guest guest]

Jan,

I can say that I wish that someone could have told me what was going on

long ago,it would have made me understand why many many things were going on

with my body. I needed to understand that I'm not lazy.

Geoff in Phoenix

[Guest guest]

Jan,

Your story is so simalar to mine!  I am 53 and always felt there was something

wrong as a child as I could not keep up but I was just labeled clumbsy/lazy. I

was in my late 20's when my sister was diagnosed and all the pieces of the

puzzle fell together.  Knowing the truth would have helped alot as I was

growning up.  CMT came from my mother who did not show signs until she was past

60 then they were mild symptoms.  I have a brother and a sister affected. (3 of

4 of my moms children)  My children 30 and 33 both have CMT, no grandchildren

yet.

Maybe you could approach the conversation from a standpoint of, " I am having

this problem and I have spoken to several other relatives that also are affected

so I thought I would mention to you in case you see any signs of CMT.  " That way

you are not saying you noticed her feet but just mentioning this pattern you

have seen in the family history. That way if she sees any signs she is not

feeling alone and starting from scratch trying to diagnose it.

I personally would have loved to have known growing up that there was a reason

for my being clumsy and slow so maybe some of my phys ed teachers would have

backed off when I could not keep up with the other kids and I was always told I

was just lazy.

It may be upsetting to her at first but it is better to be informed.  CMT is

nothing to be ashamed of and as all of us on this site know, knowledge is power!

Good Luck, I hope she realizes you are doing her a favor.

Cyndi

[Guest guest]

Hi Jan,

I can only say I hate it when some one else notices my disability. I would wait

untill she initiates the conversation. After all this is not an emergency.

Deb in Maine

[Guest guest]

Hello Jan,

First is the fact that except for CMT-X it does not skip a generation.

So, if she doesn't have CMT then her children save for a father's

contribution or a spontaneous occurrence will not have it. You can spend

a lot of money chasing other things, so knowing its presence is usually a plus.

Some people fear what an insurance company might do on finding out that it is

present. I think that problem is lessening with time.

My final comment is, I always want to know what I'm dealing with and more

appropriately, I want my doctor to know what he is dealing with.

EdM from NH

[Guest guest]

Hi, Jan,

I wish myself could know that I might have CMT earlier in my life. It is

hard to face reality. But, I find that it is better to live in reality than

in fantasy.

Knowing the reality help me learn how to cope with possible problems in

advance. That is, I am the person in charge of my life (with CMT).

How about you may send her some information about CMT for her reference,

eg., some photos and introduction about CMT? Just use, " FYI " (for your

information) in the mail.

Thus, you do not have to say it directly to avoid the possibly uncomfortable

feelings from your and her sides. This approach can also give her a lot of

space and time to decide whether to do or not to do anything or what to do

next.

Caroline

[Guest guest]

Thanks for all the helpful advice. It's nice to get a lot of different views to

consider.

Jan

[Guest guest]

I completely agree with Gretchen. By starting off with talking about your story

it is more likely to inspire thoughts like " me too, I've had the same things

happen, if this is hereditary maybe I should talk to my doctor about it " rather

than the defensiveness than can be inspired by telling someone what you think

they have. Also your emphasis on how mildly affected your family is will help

make this less of a stressor. She may be relieved to know that there is an

explanation other than being clumsy or a new mom for anything she's been

experiencing.

Holli

>

> Jan,

>

> Yes, let your niece know - but let her know by sharing about * your story *

with CMT. You may want to have a brochure or past newsletter in your bag to

offer her. Most importantly early intervention in children can make a huge

difference in children's lives.

>

> Perhaps invite her to lunch at a nice place - someplace non-threatening and

pleasant, where it is just the 2 of you, where you can have a long conversation.

>

> Gretchen

>