any support would be much appreciated.

[Guest guest]

michelle, erika had Botox done on her hamstring and left averter in her foot,

she was realt ight from the arrets after her open heart surgery. we did it 3

times, it worked for about 2-3 months, but it usually went tight again, we

did lots of PT but could not keep it lose, finally october they did muscle

releases and boy what a difference. it has been 6 mos and she is still lose,

and the walking has greatly improved. botox alone does not help, you need

lots of PT and even then it wasnt enough for erika,the way it was explained

to me is that if the brain is still sending the wrong signal to the muscle it

makes it tough, so you have to re-train the muscle when it is lose.

erika went trough a few very tough years, sick alot, basically her first 3-4

years of life, theses last 2 years she has become much stronger, she is now 6

1/2.

good luck

cathie

[Guest guest]

michelle, erika had Botox done on her hamstring and left averter in her foot,

she was realt ight from the arrets after her open heart surgery. we did it 3

times, it worked for about 2-3 months, but it usually went tight again, we

did lots of PT but could not keep it lose, finally october they did muscle

releases and boy what a difference. it has been 6 mos and she is still lose,

and the walking has greatly improved. botox alone does not help, you need

lots of PT and even then it wasnt enough for erika,the way it was explained

to me is that if the brain is still sending the wrong signal to the muscle it

makes it tough, so you have to re-train the muscle when it is lose.

erika went trough a few very tough years, sick alot, basically her first 3-4

years of life, theses last 2 years she has become much stronger, she is now 6

1/2.

good luck

cathie

[Guest guest]

Hello,

It's been quite awhile since I've been online or even had time to

read any posts but I could really use some support.

My son Nicolas is 4 1/2 with cHARgE and also autism. I know that some

of you dont agree with the dx of Autism but he is what he is and

labels dont have a lot of meaning to me. This has been a very bad

year for us. Nic has been sick almost constantly with bronchitis and

sinus infections and we are exhausted. He has had many interventions

but nothing works for long. He has missed so much school sometimes I

wonder what the point is of even sending him. I know there has been

discussion's here in the past regarding low immune function and would

like more info. Also we are awaiting a CT scan and an EEG. The Dr's

cant seem to get it together to get anything scheduled and I'm very

frustrated. Every time we get something scheduled he gets sick and

all is cancelled. We also have a ton of blood work ordered but again

cant seem to get it drawn. Nic also had BOTOX injections about 4

weeks ago in his calves for mild CP and we are still waiting to get

both of his legs casted for the maximum benefit. Has any one else had

BOTOX used on their children? I appreciate any advice and really

would appreciate just a morale booster.

Thanks,

Lezcano Mama to Nicolas 9-26-97 and 7-21-99

[Guest guest]

Dear Michele,

I'm really sorry to hear how sick Nicolas has been this year.

As you know, it seems evident to me that some children with CHARGE might

have a positive reaction to following some of the protocols that are now

being brought forward in relation to autism and the immune system. Kendra

is following one of these protocols with some very encouraging results

health wise as well as communication wise.

Many of the most promising approaches to treating the biochemical or immune

issues associated with autism can be found described at the Autism Research

Institute (ARI) webpage. It is not uncommon now to hear of children who

are recovering from autism. It is my opinion that in the very near future

(within a matter of a few years) so much will be understood about autism

that a recovered condition will not be that uncommon.

I'm sorry I know nothing about the botox injections. I hope there is

improvement for Nicolas.

I will really look forward to seeing you this Summer in Oregon.

With best wishes,

[Guest guest]

Dear Michele,

I'm really sorry to hear how sick Nicolas has been this year.

As you know, it seems evident to me that some children with CHARGE might

have a positive reaction to following some of the protocols that are now

being brought forward in relation to autism and the immune system. Kendra

is following one of these protocols with some very encouraging results

health wise as well as communication wise.

Many of the most promising approaches to treating the biochemical or immune

issues associated with autism can be found described at the Autism Research

Institute (ARI) webpage. It is not uncommon now to hear of children who

are recovering from autism. It is my opinion that in the very near future

(within a matter of a few years) so much will be understood about autism

that a recovered condition will not be that uncommon.

I'm sorry I know nothing about the botox injections. I hope there is

improvement for Nicolas.

I will really look forward to seeing you this Summer in Oregon.

With best wishes,

[Guest guest]

Dear Michele,

I'm really sorry to hear how sick Nicolas has been this year.

As you know, it seems evident to me that some children with CHARGE might

have a positive reaction to following some of the protocols that are now

being brought forward in relation to autism and the immune system. Kendra

is following one of these protocols with some very encouraging results

health wise as well as communication wise.

Many of the most promising approaches to treating the biochemical or immune

issues associated with autism can be found described at the Autism Research

Institute (ARI) webpage. It is not uncommon now to hear of children who

are recovering from autism. It is my opinion that in the very near future

(within a matter of a few years) so much will be understood about autism

that a recovered condition will not be that uncommon.

I'm sorry I know nothing about the botox injections. I hope there is

improvement for Nicolas.

I will really look forward to seeing you this Summer in Oregon.

With best wishes,

[Guest guest]

,

I would advise you to get chis legs casted as soon as possible. For maximum

benefit, the paralyized muscle needs to be stretched, starting 72 hours

after the injection. And the effects are most definately transient, but

sometimes REALLY woth it. The shots can last from 3 to 6 months and the

increase in function can be phenomenal. Other times, the effect is small,

and many people don't think it is worth it. Personally, I think Botox is

great and highly recommend it, when appropriate. However, I don't know

, and I am not the one who has to put my son through the pain and

expense of it. But, in general, I am in favor. Intense PT is required to

see the full effect, which is also a big commitment.

Hope this helps,

Kate Biel (PT in Ohio)

>

>Reply-To: CHARGE

>To: CHARGE

>Subject: any support would be much appreciated.

>Date: Fri, 29 Mar 2002 19:52:48 -0000

>

>Hello,

>It's been quite awhile since I've been online or even had time to

>read any posts but I could really use some support.

>

>My son Nicolas is 4 1/2 with cHARgE and also autism. I know that some

>of you dont agree with the dx of Autism but he is what he is and

>labels dont have a lot of meaning to me. This has been a very bad

>year for us. Nic has been sick almost constantly with bronchitis and

>sinus infections and we are exhausted. He has had many interventions

>but nothing works for long. He has missed so much school sometimes I

>wonder what the point is of even sending him. I know there has been

>discussion's here in the past regarding low immune function and would

>like more info. Also we are awaiting a CT scan and an EEG. The Dr's

>cant seem to get it together to get anything scheduled and I'm very

>frustrated. Every time we get something scheduled he gets sick and

>all is cancelled. We also have a ton of blood work ordered but again

>cant seem to get it drawn. Nic also had BOTOX injections about 4

>weeks ago in his calves for mild CP and we are still waiting to get

>both of his legs casted for the maximum benefit. Has any one else had

>BOTOX used on their children? I appreciate any advice and really

>would appreciate just a morale booster.

>

>Thanks,

> Lezcano Mama to Nicolas 9-26-97 and 7-21-99

>

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

,

I would advise you to get chis legs casted as soon as possible. For maximum

benefit, the paralyized muscle needs to be stretched, starting 72 hours

after the injection. And the effects are most definately transient, but

sometimes REALLY woth it. The shots can last from 3 to 6 months and the

increase in function can be phenomenal. Other times, the effect is small,

and many people don't think it is worth it. Personally, I think Botox is

great and highly recommend it, when appropriate. However, I don't know

, and I am not the one who has to put my son through the pain and

expense of it. But, in general, I am in favor. Intense PT is required to

see the full effect, which is also a big commitment.

Hope this helps,

Kate Biel (PT in Ohio)

>

>Reply-To: CHARGE

>To: CHARGE

>Subject: any support would be much appreciated.

>Date: Fri, 29 Mar 2002 19:52:48 -0000

>

>Hello,

>It's been quite awhile since I've been online or even had time to

>read any posts but I could really use some support.

>

>My son Nicolas is 4 1/2 with cHARgE and also autism. I know that some

>of you dont agree with the dx of Autism but he is what he is and

>labels dont have a lot of meaning to me. This has been a very bad

>year for us. Nic has been sick almost constantly with bronchitis and

>sinus infections and we are exhausted. He has had many interventions

>but nothing works for long. He has missed so much school sometimes I

>wonder what the point is of even sending him. I know there has been

>discussion's here in the past regarding low immune function and would

>like more info. Also we are awaiting a CT scan and an EEG. The Dr's

>cant seem to get it together to get anything scheduled and I'm very

>frustrated. Every time we get something scheduled he gets sick and

>all is cancelled. We also have a ton of blood work ordered but again

>cant seem to get it drawn. Nic also had BOTOX injections about 4

>weeks ago in his calves for mild CP and we are still waiting to get

>both of his legs casted for the maximum benefit. Has any one else had

>BOTOX used on their children? I appreciate any advice and really

>would appreciate just a morale booster.

>

>Thanks,

> Lezcano Mama to Nicolas 9-26-97 and 7-21-99

>

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

,

I would advise you to get chis legs casted as soon as possible. For maximum

benefit, the paralyized muscle needs to be stretched, starting 72 hours

after the injection. And the effects are most definately transient, but

sometimes REALLY woth it. The shots can last from 3 to 6 months and the

increase in function can be phenomenal. Other times, the effect is small,

and many people don't think it is worth it. Personally, I think Botox is

great and highly recommend it, when appropriate. However, I don't know

, and I am not the one who has to put my son through the pain and

expense of it. But, in general, I am in favor. Intense PT is required to

see the full effect, which is also a big commitment.

Hope this helps,

Kate Biel (PT in Ohio)

>

>Reply-To: CHARGE

>To: CHARGE

>Subject: any support would be much appreciated.

>Date: Fri, 29 Mar 2002 19:52:48 -0000

>

>Hello,

>It's been quite awhile since I've been online or even had time to

>read any posts but I could really use some support.

>

>My son Nicolas is 4 1/2 with cHARgE and also autism. I know that some

>of you dont agree with the dx of Autism but he is what he is and

>labels dont have a lot of meaning to me. This has been a very bad

>year for us. Nic has been sick almost constantly with bronchitis and

>sinus infections and we are exhausted. He has had many interventions

>but nothing works for long. He has missed so much school sometimes I

>wonder what the point is of even sending him. I know there has been

>discussion's here in the past regarding low immune function and would

>like more info. Also we are awaiting a CT scan and an EEG. The Dr's

>cant seem to get it together to get anything scheduled and I'm very

>frustrated. Every time we get something scheduled he gets sick and

>all is cancelled. We also have a ton of blood work ordered but again

>cant seem to get it drawn. Nic also had BOTOX injections about 4

>weeks ago in his calves for mild CP and we are still waiting to get

>both of his legs casted for the maximum benefit. Has any one else had

>BOTOX used on their children? I appreciate any advice and really

>would appreciate just a morale booster.

>

>Thanks,

> Lezcano Mama to Nicolas 9-26-97 and 7-21-99

>

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Hi ,

I'm sorry to hear about current struggles with . I know an adult who had

success with a series of

botox injections for a condition called distonia (sp) -something about a sudden

and permanent dysfunction in

movement in random areas of the body. I am not familiar with the cause or the

condition, but I can at least

tell you that her experience seems to have been a positive one.

The idea of botox bothers me (I'm a little squeamish!). However if it has

already been 4 weeks and there

haven't been any adverse effects, you can probably exhale! If the injections are

to be repeated, I would

certainly do a lot of research about it, especially since he does have a low

immune function.

Penina has only had one ear infection (last week) since the beginning of

December (amazing) when she had her

Prevnar vaccine. The jury is still out as to Prevnar's effectiveness against

otitis media (I have been told

that reports range from 15% to 30%) - I believe it was approved by the FDA to be

used against pneumococcal

meningitis. But so far so good. Perhaps Prevnar might help ...

Hang in there,

Anne, mom of Penina (CHArgE, 5 1/2)