Re: neurology update--CVS & Pain

[Guest guest]

n,

Libby does great with Periactin daily and a combination of Zofran/Ativan as

abortives. We have tried several other migraine meds. and amitriptylin (sp?)

with no help. The amitrip. made her CRAZY!!! We were seriously afraid of

permanent personality/behavioral changes. Very scary! Libby's GI doc. is still

not convinced that the Periactin is what slowed down the episodes. I am! After

journaling 9mos off of Periactin, the episodes slowly increased back to 1-2x

month. We started the drug again...they slowed down. Best advice...keep a

" sick journal " .

Gross

wife to Wesley and Mom to Madalyn 7-1/2 and Libby 3-1/2 CHARGEr

n Mengedoht wrote:

Hello everyone,

saw the Neurologist Friday and we had a good discussion about

's episodes and he agrees that treating her for CVS is a good idea. He

also increased her one anti-convulsant med and hopefully this will help. He also

said if the current CVS med doesn't help us enough, there is another med that he

highly recommends for CVS and abdominal migraines, so there is hope that we are

on the right path.

He admitted he has only seen one other child with CHARGE syndrome and doesn't

have that much experience treating children with CHARGE. He was interested in

the CHARGE syndrome manual, (I took it with us) but was disappointed as there

were no articles dealing with CVS or pain.

Kim--I asked him about the Cranial Sacral Therapy,but he did not think that

this would be helpful to us, but wants us to do Brush Therapy instead.

He also said that I need to keep talking to the other moms here, because he

said that most children who have the same rare syndrome, usually benefit from

the same type of meds and therapy, so listening to all of you and the advice and

tips you give, are very important, as this may very well hold the key to busting

up the cylce and stopping it for good. Your experience with this is very

beneficial and may help all CHARGE kids who suffer from CVS.

Hopefully, they will do a study on CVS in children who have CHARGE and the

effects it has on them. I am willing to send any type of medical records and

share any informaton about 's case, if they ever do such a study. It

seems we have enough cases of CVS that it does warrant such a study.

I will let you know how the meds and therapy work. I would like to know what

has worked out so well for all of you?

n-mom to 3yrs. CHARGE ,Zach 10yrs. Jordan 7 yrs, Candace 2yrs and

wife toLester for 11 yrs.

---------------------------------

Yahoo! Mail

Bring photos to life! New PhotoMail makes sharing a breeze.

[Guest guest]

n,

Libby does great with Periactin daily and a combination of Zofran/Ativan as

abortives. We have tried several other migraine meds. and amitriptylin (sp?)

with no help. The amitrip. made her CRAZY!!! We were seriously afraid of

permanent personality/behavioral changes. Very scary! Libby's GI doc. is still

not convinced that the Periactin is what slowed down the episodes. I am! After

journaling 9mos off of Periactin, the episodes slowly increased back to 1-2x

month. We started the drug again...they slowed down. Best advice...keep a

" sick journal " .

Gross

wife to Wesley and Mom to Madalyn 7-1/2 and Libby 3-1/2 CHARGEr

n Mengedoht wrote:

Hello everyone,

saw the Neurologist Friday and we had a good discussion about

's episodes and he agrees that treating her for CVS is a good idea. He

also increased her one anti-convulsant med and hopefully this will help. He also

said if the current CVS med doesn't help us enough, there is another med that he

highly recommends for CVS and abdominal migraines, so there is hope that we are

on the right path.

He admitted he has only seen one other child with CHARGE syndrome and doesn't

have that much experience treating children with CHARGE. He was interested in

the CHARGE syndrome manual, (I took it with us) but was disappointed as there

were no articles dealing with CVS or pain.

Kim--I asked him about the Cranial Sacral Therapy,but he did not think that

this would be helpful to us, but wants us to do Brush Therapy instead.

He also said that I need to keep talking to the other moms here, because he

said that most children who have the same rare syndrome, usually benefit from

the same type of meds and therapy, so listening to all of you and the advice and

tips you give, are very important, as this may very well hold the key to busting

up the cylce and stopping it for good. Your experience with this is very

beneficial and may help all CHARGE kids who suffer from CVS.

Hopefully, they will do a study on CVS in children who have CHARGE and the

effects it has on them. I am willing to send any type of medical records and

share any informaton about 's case, if they ever do such a study. It

seems we have enough cases of CVS that it does warrant such a study.

I will let you know how the meds and therapy work. I would like to know what

has worked out so well for all of you?

n-mom to 3yrs. CHARGE ,Zach 10yrs. Jordan 7 yrs, Candace 2yrs and

wife toLester for 11 yrs.

---------------------------------

Yahoo! Mail

Bring photos to life! New PhotoMail makes sharing a breeze.

[Guest guest]

n,

Libby does great with Periactin daily and a combination of Zofran/Ativan as

abortives. We have tried several other migraine meds. and amitriptylin (sp?)

with no help. The amitrip. made her CRAZY!!! We were seriously afraid of

permanent personality/behavioral changes. Very scary! Libby's GI doc. is still

not convinced that the Periactin is what slowed down the episodes. I am! After

journaling 9mos off of Periactin, the episodes slowly increased back to 1-2x

month. We started the drug again...they slowed down. Best advice...keep a

" sick journal " .

Gross

wife to Wesley and Mom to Madalyn 7-1/2 and Libby 3-1/2 CHARGEr

n Mengedoht wrote:

Hello everyone,

saw the Neurologist Friday and we had a good discussion about

's episodes and he agrees that treating her for CVS is a good idea. He

also increased her one anti-convulsant med and hopefully this will help. He also

said if the current CVS med doesn't help us enough, there is another med that he

highly recommends for CVS and abdominal migraines, so there is hope that we are

on the right path.

He admitted he has only seen one other child with CHARGE syndrome and doesn't

have that much experience treating children with CHARGE. He was interested in

the CHARGE syndrome manual, (I took it with us) but was disappointed as there

were no articles dealing with CVS or pain.

Kim--I asked him about the Cranial Sacral Therapy,but he did not think that

this would be helpful to us, but wants us to do Brush Therapy instead.

He also said that I need to keep talking to the other moms here, because he

said that most children who have the same rare syndrome, usually benefit from

the same type of meds and therapy, so listening to all of you and the advice and

tips you give, are very important, as this may very well hold the key to busting

up the cylce and stopping it for good. Your experience with this is very

beneficial and may help all CHARGE kids who suffer from CVS.

Hopefully, they will do a study on CVS in children who have CHARGE and the

effects it has on them. I am willing to send any type of medical records and

share any informaton about 's case, if they ever do such a study. It

seems we have enough cases of CVS that it does warrant such a study.

I will let you know how the meds and therapy work. I would like to know what

has worked out so well for all of you?

n-mom to 3yrs. CHARGE ,Zach 10yrs. Jordan 7 yrs, Candace 2yrs and

wife toLester for 11 yrs.

---------------------------------

Yahoo! Mail

Bring photos to life! New PhotoMail makes sharing a breeze.

[Guest guest]

n-

Sounds like your neurologist is a gem! When you find a dr who understands

the limitations of their experience and the value of the parent and their

connection with other parents -- wow! With someone like that working with

you, surely you'll find the best solution for .

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

n-

Sounds like your neurologist is a gem! When you find a dr who understands

the limitations of their experience and the value of the parent and their

connection with other parents -- wow! With someone like that working with

you, surely you'll find the best solution for .

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

n-

Sounds like your neurologist is a gem! When you find a dr who understands

the limitations of their experience and the value of the parent and their

connection with other parents -- wow! With someone like that working with

you, surely you'll find the best solution for .

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

yep lol and right now i had a cvs episode yuk

>

> n-

> Sounds like your neurologist is a gem! When you find a dr who understands

> the limitations of their experience and the value of the parent and their

> connection with other parents -- wow! With someone like that working with

> you, surely you'll find the best solution for .

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

yep lol and right now i had a cvs episode yuk

>

> n-

> Sounds like your neurologist is a gem! When you find a dr who understands

> the limitations of their experience and the value of the parent and their

> connection with other parents -- wow! With someone like that working with

> you, surely you'll find the best solution for .

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

yep lol and right now i had a cvs episode yuk

>

> n-

> Sounds like your neurologist is a gem! When you find a dr who understands

> the limitations of their experience and the value of the parent and their

> connection with other parents -- wow! With someone like that working with

> you, surely you'll find the best solution for .

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

n,

I'm glad the neurology appointment went well, and I hope the new meds help

break this CVS/pain cycle for good! Remind me, who is your

neurologist--is it Dr. Shapiro? That's who we see, so I was thinking if it was

him, then is the one other child he sees with CHARGE. He's got on

Lamictal right now for seizure-like activity, but he said it also may help her

cyclical vomiting episodes some. 's episodes aren't near as frequent or

painful as 's, though, and don't last as long. Hers only come every

other month and only last about 90 minutes each time. But they are like

clockwork--I track them on a calendar and can pretty much pinpoint the week,

sometimes even down to the day, that they will happen. That's such a weird

thing to me--it's almost like a woman's hormonal cycle, it's so consistent.

Don't be afraid to get some help for yourself, too, if you're feeling

overwhelmed. I'd venture to say that the majority of us here on the list have

been to a therapist or a support group and/or have been on medication at some

point or another to help deal with everything. Sometimes we're in such survival

mode, just to keep everything going, that we internalize our feelings, only to

have them hit us hard at a later time. At some point, it helps to acknowledge

those feelings and go through the natural grief cycle, and an objective person

can often help with that. Good luck to you!

, mom to (4)

---------------------------------

Yahoo! Mail

Use Photomail to share photos without annoying attachments.

[Guest guest]

Lelsie,

Yes, it is Dr. Shapiro. I wouldn't take her to anyone else there! He did

mention, another CHARGE child and thought that she was having seizures, and I

instantly knew he was referring to your ! I just smiled and nodded, (he was

in a big way of talking) which is saying something, because he is usually so

quiet!

I noticed you was talking about ENT and tonsils? sees Dr. Willging

and he did a partial adnoidectomy and sinus flush on her last year. Her quality

of life had just diminished to the point that it had to be done. Just explain

the quality of life issue, and how it has effected both you and . I think

then he would be more than willing to do it. He is very reasonable. Also Jordan

had to have both, his adnoids and tonsils taken out!(Dr.Willging again) No

x-rays were needed they could see with their own eyes, that both sides were

almost touching and getting ready to grow together! So, his tonsils were

absolutely just HUGE!!!!

His tonsils and adnoids were removed at 3 yrs. of age---if you have any

questions or comments about it, I would be more than happy to discuss specifics

at any time. Also, just to let you know, most of his pediatricians kept putting

it off, until he saw a differant pediatrician, that he normally didn't see in

the practice and that was how we were able to get a referral to an ENT! They

thought that he would outgrow the problem, problems was, his tonsils were

outgrowing him!

Take care and if you have questions about the tonsils, let me know, I will try

and help if I can!

n-mom to 3yrs. CHARGE ,Zach 10yrs. Jordan 7 yrs, Candace 2yrs and

wife toLester for 11 yrs.

---------------------------------

Yahoo! Mail

Bring photos to life! New PhotoMail makes sharing a breeze.

[Guest guest]

Lelsie,

Yes, it is Dr. Shapiro. I wouldn't take her to anyone else there! He did

mention, another CHARGE child and thought that she was having seizures, and I

instantly knew he was referring to your ! I just smiled and nodded, (he was

in a big way of talking) which is saying something, because he is usually so

quiet!

I noticed you was talking about ENT and tonsils? sees Dr. Willging

and he did a partial adnoidectomy and sinus flush on her last year. Her quality

of life had just diminished to the point that it had to be done. Just explain

the quality of life issue, and how it has effected both you and . I think

then he would be more than willing to do it. He is very reasonable. Also Jordan

had to have both, his adnoids and tonsils taken out!(Dr.Willging again) No

x-rays were needed they could see with their own eyes, that both sides were

almost touching and getting ready to grow together! So, his tonsils were

absolutely just HUGE!!!!

His tonsils and adnoids were removed at 3 yrs. of age---if you have any

questions or comments about it, I would be more than happy to discuss specifics

at any time. Also, just to let you know, most of his pediatricians kept putting

it off, until he saw a differant pediatrician, that he normally didn't see in

the practice and that was how we were able to get a referral to an ENT! They

thought that he would outgrow the problem, problems was, his tonsils were

outgrowing him!

Take care and if you have questions about the tonsils, let me know, I will try

and help if I can!

n-mom to 3yrs. CHARGE ,Zach 10yrs. Jordan 7 yrs, Candace 2yrs and

wife toLester for 11 yrs.

---------------------------------

Yahoo! Mail

Bring photos to life! New PhotoMail makes sharing a breeze.

[Guest guest]

Lelsie,

Yes, it is Dr. Shapiro. I wouldn't take her to anyone else there! He did

mention, another CHARGE child and thought that she was having seizures, and I

instantly knew he was referring to your ! I just smiled and nodded, (he was

in a big way of talking) which is saying something, because he is usually so

quiet!

I noticed you was talking about ENT and tonsils? sees Dr. Willging

and he did a partial adnoidectomy and sinus flush on her last year. Her quality

of life had just diminished to the point that it had to be done. Just explain

the quality of life issue, and how it has effected both you and . I think

then he would be more than willing to do it. He is very reasonable. Also Jordan

had to have both, his adnoids and tonsils taken out!(Dr.Willging again) No

x-rays were needed they could see with their own eyes, that both sides were

almost touching and getting ready to grow together! So, his tonsils were

absolutely just HUGE!!!!

His tonsils and adnoids were removed at 3 yrs. of age---if you have any

questions or comments about it, I would be more than happy to discuss specifics

at any time. Also, just to let you know, most of his pediatricians kept putting

it off, until he saw a differant pediatrician, that he normally didn't see in

the practice and that was how we were able to get a referral to an ENT! They

thought that he would outgrow the problem, problems was, his tonsils were

outgrowing him!

Take care and if you have questions about the tonsils, let me know, I will try

and help if I can!

n-mom to 3yrs. CHARGE ,Zach 10yrs. Jordan 7 yrs, Candace 2yrs and

wife toLester for 11 yrs.

---------------------------------

Yahoo! Mail

Bring photos to life! New PhotoMail makes sharing a breeze.

[Guest guest]

Thanks, n. I may have more questions for you on the tonsillectomy once we

get in to see 's ENT. She sees Dr. Choo, but I don't think his area of

specialty is nose and throat issues--he's more one of the main ear people--so he

may end up referring us to Willging or someone else on this. I think we've

actually seen Willging once, us here at the Mason clinic. We liked him pretty

well, from what I can remember.

And yes, you're right--I'm surprised that you found Dr. Shapiro so talkative

the other day. He is usually so quiet! We really like him, though--he's very

knowledgeable, you can tell, even if he doesn't have a lot of CHARGE experience.

, mom to (4)

---------------------------------

Yahoo! Mail

Use Photomail to share photos without annoying attachments.

[Guest guest]

Thanks, n. I may have more questions for you on the tonsillectomy once we

get in to see 's ENT. She sees Dr. Choo, but I don't think his area of

specialty is nose and throat issues--he's more one of the main ear people--so he

may end up referring us to Willging or someone else on this. I think we've

actually seen Willging once, us here at the Mason clinic. We liked him pretty

well, from what I can remember.

And yes, you're right--I'm surprised that you found Dr. Shapiro so talkative

the other day. He is usually so quiet! We really like him, though--he's very

knowledgeable, you can tell, even if he doesn't have a lot of CHARGE experience.

, mom to (4)

---------------------------------

Yahoo! Mail

Use Photomail to share photos without annoying attachments.

[Guest guest]

Thanks, n. I may have more questions for you on the tonsillectomy once we

get in to see 's ENT. She sees Dr. Choo, but I don't think his area of

specialty is nose and throat issues--he's more one of the main ear people--so he

may end up referring us to Willging or someone else on this. I think we've

actually seen Willging once, us here at the Mason clinic. We liked him pretty

well, from what I can remember.

And yes, you're right--I'm surprised that you found Dr. Shapiro so talkative

the other day. He is usually so quiet! We really like him, though--he's very

knowledgeable, you can tell, even if he doesn't have a lot of CHARGE experience.

, mom to (4)

---------------------------------

Yahoo! Mail

Use Photomail to share photos without annoying attachments.

[Guest guest]

n,

What a great neurologist to acknowledge the learning that come from

other families and the willingness to look at the CHARGE manual.

CVS is one of those things we know anecdotally from families, but no

research on it - causes, presentation, or treatment of it. The Manual

is being revised - please send all ideas for areas that need added, or

updated to n. this is a good one.

I hope the CVS meds help her out.

On the CST - I don't know that any of our doctors or even myself could

have anticipated the healthful benefits Dylan obtains from CST - we

started to improve mobility through his shoulders and upper arms, so

his arms wouldn't give out when he crawled and the rest they say is

history.

Kim

> Hello everyone,

>

> saw the Neurologist Friday and we had a good discussion about

's episodes and he agrees that treating her for CVS is a good idea. He

also increased her one anti-convulsant med and hopefully this will help. He also

said if the current CVS med doesn't help us enough, there is another med that he

highly recommends for CVS and abdominal migraines, so there is hope that we are

on the right path.

>

> He admitted he has only seen one other child with CHARGE syndrome and

doesn't have that much experience treating children with CHARGE. He was

interested in the CHARGE syndrome manual, (I took it with us) but was

disappointed as there were no articles dealing with CVS or pain.

>

> Kim--I asked him about the Cranial Sacral Therapy,but he did not think that

this would be helpful to us, but wants us to do Brush Therapy instead.

>

> He also said that I need to keep talking to the other moms here, because he

said that most children who have the same rare syndrome, usually benefit from

the same type of meds and therapy, so listening to all of you and the advice and

tips you give, are very important, as this may very well hold the key to busting

up the cylce and stopping it for good. Your experience with this is very

beneficial and may help all CHARGE kids who suffer from CVS.

>

> Hopefully, they will do a study on CVS in children who have CHARGE and the

effects it has on them. I am willing to send any type of medical records and

share any informaton about 's case, if they ever do such a study. It

seems we have enough cases of CVS that it does warrant such a study.

>

>

> I will let you know how the meds and therapy work. I would like to know what

has worked out so well for all of you?

>

>

>

> n-mom to 3yrs. CHARGE ,Zach 10yrs. Jordan 7 yrs, Candace 2yrs and

wife toLester for 11 yrs.

>

>

> ---------------------------------

> Yahoo! Mail

> Bring photos to life! New PhotoMail makes sharing a breeze.

>

>

[Guest guest]

n and Kim,

I will be eventualy seeing a neurologist. I am not sure exactly was CVS is

but I will let you know how that goes. I think seizures were a little less

known in charge so they didnt really include much in the manual, (I will

have a read through to see if there is anything later)

I agree though there should be more in the manual on this sort of stuff. I

wonder though if any charge seizures can be linked to sleep apnea. It be

interesting to find a link. I know i read science articles linking seizure

activity to sleep apnea in medicaly unremarkable ppl, so i wonder how it

would be for chargers.

Chantelle

[Guest guest]

Chantelle,

CVS refers to the cyclical vomiting / abdominal migraines.

On seizures and sleep - very interesting idea.

Kim

[Guest guest]

Chantelle,

CVS refers to the cyclical vomiting / abdominal migraines.

On seizures and sleep - very interesting idea.

Kim

[Guest guest]

One neurologist here found in a child with CHARGE it was an increase

in cerebral spinal fluid pressure. Also affected vision at times when

she couldn't communicate, it was the interuption of vision, similar to

what one would experience with cortical vision impairment, but this

would resolve except during various episodes.

> Hello everyone,

>

> saw the Neurologist Friday and we had a good discussion

about 's episodes and he agrees that treating her for CVS is a

good idea. He also increased her one anti-convulsant med and hopefully

this will help. He also said if the current CVS med doesn't help us

enough, there is another med that he highly recommends for CVS and

abdominal migraines, so there is hope that we are on the right path.

>

> He admitted he has only seen one other child with CHARGE syndrome

and doesn't have that much experience treating children with CHARGE.

He was interested in the CHARGE syndrome manual, (I took it with us)

but was disappointed as there were no articles dealing with CVS or pain.

>

> Kim--I asked him about the Cranial Sacral Therapy,but he did not

think that this would be helpful to us, but wants us to do Brush

Therapy instead.

>

> He also said that I need to keep talking to the other moms here,

because he said that most children who have the same rare syndrome,

usually benefit from the same type of meds and therapy, so listening

to all of you and the advice and tips you give, are very important, as

this may very well hold the key to busting up the cylce and stopping

it for good. Your experience with this is very beneficial and may help

all CHARGE kids who suffer from CVS.

>

> Hopefully, they will do a study on CVS in children who have CHARGE

and the effects it has on them. I am willing to send any type of

medical records and share any informaton about 's case, if

they ever do such a study. It seems we have enough cases of CVS that

it does warrant such a study.

>

>

> I will let you know how the meds and therapy work. I would like to

know what has worked out so well for all of you?

>

>

>

> n-mom to 3yrs. CHARGE ,Zach 10yrs. Jordan 7 yrs,

Candace 2yrs and wife toLester for 11 yrs.

>

>

> ---------------------------------

> Yahoo! Mail

> Bring photos to life! New PhotoMail makes sharing a breeze.

>

>

[Guest guest]

Libby every test imaginable, including placement of an ICP Probe to monitor

intercranial pressure at the onset of and early episode ( monitored 5 days ).

While she does have increased fluid, she does not have increased pressure. The

neurosurgeon explained that leaving Libby's PDA open for such a long time

allowed for increased fluid to the brain causing permanent enlargement of the

space without permanent increased pressure. I do agree that testing should be

done. However, I don't feel there is any harm in trying some meds. for possible

relief while testing is being scheduled. As Libby's awesome neurologist once

said to us, " If it looks like a duck..... " . From that point, we started meds.

and scheduled other tests to rule out other possibilities.

wife to Wesley and Mom to Madalyn 7-1/2 and Libby 3-1/2 CHARGEr

ann_gloyn wrote:

One neurologist here found in a child with CHARGE it was an increase

in cerebral spinal fluid pressure. Also affected vision at times when

she couldn't communicate, it was the interuption of vision, similar to

what one would experience with cortical vision impairment, but this

would resolve except during various episodes.

> Hello everyone,

>

> saw the Neurologist Friday and we had a good discussion

about 's episodes and he agrees that treating her for CVS is a

good idea. He also increased her one anti-convulsant med and hopefully

this will help. He also said if the current CVS med doesn't help us

enough, there is another med that he highly recommends for CVS and

abdominal migraines, so there is hope that we are on the right path.

>

> He admitted he has only seen one other child with CHARGE syndrome

and doesn't have that much experience treating children with CHARGE.

He was interested in the CHARGE syndrome manual, (I took it with us)

but was disappointed as there were no articles dealing with CVS or pain.

>

> Kim--I asked him about the Cranial Sacral Therapy,but he did not

think that this would be helpful to us, but wants us to do Brush

Therapy instead.

>

> He also said that I need to keep talking to the other moms here,

because he said that most children who have the same rare syndrome,

usually benefit from the same type of meds and therapy, so listening

to all of you and the advice and tips you give, are very important, as

this may very well hold the key to busting up the cylce and stopping

it for good. Your experience with this is very beneficial and may help

all CHARGE kids who suffer from CVS.

>

> Hopefully, they will do a study on CVS in children who have CHARGE

and the effects it has on them. I am willing to send any type of

medical records and share any informaton about 's case, if

they ever do such a study. It seems we have enough cases of CVS that

it does warrant such a study.

>

>

> I will let you know how the meds and therapy work. I would like to

know what has worked out so well for all of you?

>

>

>

> n-mom to 3yrs. CHARGE ,Zach 10yrs. Jordan 7 yrs,

Candace 2yrs and wife toLester for 11 yrs.

>

>

> ---------------------------------

> Yahoo! Mail

> Bring photos to life! New PhotoMail makes sharing a breeze.

>

>