Re: Water bed. . . . or not

[Guest guest]

Dear Jan,

I have been rereading email messages and I happened on this older message of

yours. My daughter and I are in Québec City, Canada.

My daughter has hypotonia too and yet she is tense and anxious. Can you

tell us what myofascial release is or refer us to your therapist?

Thank you,

Ioana Moïse, mom to Hélène, 2 1/2 yrs old (probably CHARGE syndrome but as

yet undiagnosed due to relatively few malformations)

>

> Reply-To: CHARGE

> Date: Mon, 29 Sep 2003 23:55:30 -0500

> To: CHARGE

> Subject: Re: Water bed. . . . or not

>

> Hi Carol,

>

> It took two geneticists about 8 months to diagnose our daughter, , with

> CHa?RGE. She was born with a significant bilateral cleft lip and palate. She

> has bilateral colobomas of the optic nerve and retina, also a bilateral mod.

> to severe, mixed hearing loss. She has many syndromal features, but it took

> many specialists to figure it all out. (Now, I think many of her initial

> specialists are quite surprized to see her as a CHARGE child).

> One thing that has been very interesting along our journey thus far has been

> the introduction of licensed therapists for . started to roll over

> when she was about 4 or 5 months old, we were so proud of her 'log-roll.'

> However, with an evaluation with a licensed OT, (when was about 1 year)

> she discovered tightness immediately. also has hypotonia. The OT

> instructed us on myofascial release. became very 'floppy' within a few

> weeks on this program. We needed to loosen her up, before we could strenghten

> her up.

>

> The myofascial has worked wonderfully for , I hope you find answers too.

>

> Jan H. Mom to (3 yr. on 10/11)

>

> Water bed. . . . or not

>

>

> Just wondering and thought I'd ask the experts.

> My 6 mo old grandson hasn't been diagnosed yet. Genetisis

> (please bear with me on spelling) " guessed " CP but we are waiting

> test results.

> He has many things that would make one think CHARGE. Coloboma,

> no or very slight hearing, undesended testical, very slight

> swallowing problem, split uvula, some facial abnormalities and

> something with his fingers and toes that everyone but me seems to be

> able to see. The one thing that does point to CP is the fact that he

> has hypertonia rather the hypo. I'm a firm believer that a name is a

> name . . . the problems still exist.

> They have the early intervention folks involved, but things seem

> to be moving very slowly . . . lots of evaluating and then lots

> more. I think they had better get started on a physical therapy

> routine, which finally leads to my question. Has anyone ever

> suggested a water bed or an air mattress, that wasn't inflated to

> the " tight " point, to lay these little ones on for a period of awake

> time.

> It would seem to me that any movement would gently work almost

> all muscles. Just wondering if anyone has ever tried it or had it

> suggested or if it is a really rotten simple idea that an over

> anxious grandmother thinks makes good sense.

> Any insight you can give will be greatly appreciated.

> Thanks

> Carol

>

>

>

>

>

>

[Guest guest]

Dear Jan,

I have been rereading email messages and I happened on this older message of

yours. My daughter and I are in Québec City, Canada.

My daughter has hypotonia too and yet she is tense and anxious. Can you

tell us what myofascial release is or refer us to your therapist?

Thank you,

Ioana Moïse, mom to Hélène, 2 1/2 yrs old (probably CHARGE syndrome but as

yet undiagnosed due to relatively few malformations)

>

> Reply-To: CHARGE

> Date: Mon, 29 Sep 2003 23:55:30 -0500

> To: CHARGE

> Subject: Re: Water bed. . . . or not

>

> Hi Carol,

>

> It took two geneticists about 8 months to diagnose our daughter, , with

> CHa?RGE. She was born with a significant bilateral cleft lip and palate. She

> has bilateral colobomas of the optic nerve and retina, also a bilateral mod.

> to severe, mixed hearing loss. She has many syndromal features, but it took

> many specialists to figure it all out. (Now, I think many of her initial

> specialists are quite surprized to see her as a CHARGE child).

> One thing that has been very interesting along our journey thus far has been

> the introduction of licensed therapists for . started to roll over

> when she was about 4 or 5 months old, we were so proud of her 'log-roll.'

> However, with an evaluation with a licensed OT, (when was about 1 year)

> she discovered tightness immediately. also has hypotonia. The OT

> instructed us on myofascial release. became very 'floppy' within a few

> weeks on this program. We needed to loosen her up, before we could strenghten

> her up.

>

> The myofascial has worked wonderfully for , I hope you find answers too.

>

> Jan H. Mom to (3 yr. on 10/11)

>

> Water bed. . . . or not

>

>

> Just wondering and thought I'd ask the experts.

> My 6 mo old grandson hasn't been diagnosed yet. Genetisis

> (please bear with me on spelling) " guessed " CP but we are waiting

> test results.

> He has many things that would make one think CHARGE. Coloboma,

> no or very slight hearing, undesended testical, very slight

> swallowing problem, split uvula, some facial abnormalities and

> something with his fingers and toes that everyone but me seems to be

> able to see. The one thing that does point to CP is the fact that he

> has hypertonia rather the hypo. I'm a firm believer that a name is a

> name . . . the problems still exist.

> They have the early intervention folks involved, but things seem

> to be moving very slowly . . . lots of evaluating and then lots

> more. I think they had better get started on a physical therapy

> routine, which finally leads to my question. Has anyone ever

> suggested a water bed or an air mattress, that wasn't inflated to

> the " tight " point, to lay these little ones on for a period of awake

> time.

> It would seem to me that any movement would gently work almost

> all muscles. Just wondering if anyone has ever tried it or had it

> suggested or if it is a really rotten simple idea that an over

> anxious grandmother thinks makes good sense.

> Any insight you can give will be greatly appreciated.

> Thanks

> Carol

>

>

>

>

>

>

[Guest guest]

Carol-

I don't think you are an " overanxious grandma " . Your idea sounds good, but I'd

check with the PT or OT first. I would always have someone monitoring him on

the bed as waterbeds are a known suffocation hazard for infants. As a

therapeutic tool though, it might work well. I have found that sometimes what

seems logical to me as a layman is not a good idea when I know all of the facts

that the specialists know. That said, sometimes all of their facts get in the

way of seeing the simple truths :-)

Your grandson does sound to me like he fits with CHARGE. There are children

with CHARGE who also have other things so it's possible for him to have CHARGE

and CP. Either way, you are welcome here. It sounds like you will have many

issues and concerns that we can share.

I agree that the label isn't really significant as far as changing the problems.

But it sure does help to streamline the information gathering. It also gives me

a great sense of belonging, rather than isolation, to know that I have this

wonderful CHARGE family on this journey with me.

By six months, even without a firm diagnosis, the evaluations should have led to

specific therapy plans that should be well under way. Keep pushing for that.

It may require some education for yourself and his parents about the law and

effective advocacy. Perhaps you've already gone that way.

I look forward to hearing more about your grandson.

Michele W

mom to Aubrie (5 yrs) CHaRgE and (11 yrs)

Water bed. . . . or not

Just wondering and thought I'd ask the experts.

My 6 mo old grandson hasn't been diagnosed yet. Genetisis

(please bear with me on spelling) " guessed " CP but we are waiting

test results.

He has many things that would make one think CHARGE. Coloboma,

no or very slight hearing, undesended testical, very slight

swallowing problem, split uvula, some facial abnormalities and

something with his fingers and toes that everyone but me seems to be

able to see. The one thing that does point to CP is the fact that he

has hypertonia rather the hypo. I'm a firm believer that a name is a

name . . . the problems still exist.

They have the early intervention folks involved, but things seem

to be moving very slowly . . . lots of evaluating and then lots

more. I think they had better get started on a physical therapy

routine, which finally leads to my question. Has anyone ever

suggested a water bed or an air mattress, that wasn't inflated to

the " tight " point, to lay these little ones on for a period of awake

time.

It would seem to me that any movement would gently work almost

all muscles. Just wondering if anyone has ever tried it or had it

suggested or if it is a really rotten simple idea that an over

anxious grandmother thinks makes good sense.

Any insight you can give will be greatly appreciated.

Thanks

Carol

[Guest guest]

Carol,

I've never heard of the idea specifically for a child with possible cp

and/or possible CHARGE, but I don't know why it wouldn't be a wonderful

idea to pursue. Your idea that many muscles could be worked seems

really valid. I know that hippotherapy works for some of our older

children for the same principle it would seem.

Best of luck and I hope you find support for your idea.

You seem like just the right kind of grandmother to have.

:-)

Mom to Kendra, 17, CHARGE, , 22 and Camille, 25

Water bed. . . . or not

Just wondering and thought I'd ask the experts.

My 6 mo old grandson hasn't been diagnosed yet. Genetisis

(please bear with me on spelling) " guessed " CP but we are waiting

test results.

He has many things that would make one think CHARGE. Coloboma,

no or very slight hearing, undesended testical, very slight

swallowing problem, split uvula, some facial abnormalities and

something with his fingers and toes that everyone but me seems to be

able to see. The one thing that does point to CP is the fact that he

has hypertonia rather the hypo. I'm a firm believer that a name is a

name . . . the problems still exist.

They have the early intervention folks involved, but things seem

to be moving very slowly . . . lots of evaluating and then lots

more. I think they had better get started on a physical therapy

routine, which finally leads to my question. Has anyone ever

suggested a water bed or an air mattress, that wasn't inflated to

the " tight " point, to lay these little ones on for a period of awake

time.

It would seem to me that any movement would gently work almost

all muscles. Just wondering if anyone has ever tried it or had it

suggested or if it is a really rotten simple idea that an over

anxious grandmother thinks makes good sense.

Any insight you can give will be greatly appreciated. Thanks

Carol

Membership of this email support groups 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 CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website www.chargesyndrome.org or

by calling 1-.

[Guest guest]

Hi Carol,

It took two geneticists about 8 months to diagnose our daughter, , with

CHa?RGE. She was born with a significant bilateral cleft lip and palate. She has

bilateral colobomas of the optic nerve and retina, also a bilateral mod. to

severe, mixed hearing loss. She has many syndromal features, but it took many

specialists to figure it all out. (Now, I think many of her initial specialists

are quite surprized to see her as a CHARGE child).

One thing that has been very interesting along our journey thus far has been

the introduction of licensed therapists for . started to roll over

when she was about 4 or 5 months old, we were so proud of her 'log-roll.'

However, with an evaluation with a licensed OT, (when was about 1 year)

she discovered tightness immediately. also has hypotonia. The OT

instructed us on myofascial release. became very 'floppy' within a few

weeks on this program. We needed to loosen her up, before we could strenghten

her up.

The myofascial has worked wonderfully for , I hope you find answers too.

Jan H. Mom to (3 yr. on 10/11)

Water bed. . . . or not

Just wondering and thought I'd ask the experts.

My 6 mo old grandson hasn't been diagnosed yet. Genetisis

(please bear with me on spelling) " guessed " CP but we are waiting

test results.

He has many things that would make one think CHARGE. Coloboma,

no or very slight hearing, undesended testical, very slight

swallowing problem, split uvula, some facial abnormalities and

something with his fingers and toes that everyone but me seems to be

able to see. The one thing that does point to CP is the fact that he

has hypertonia rather the hypo. I'm a firm believer that a name is a

name . . . the problems still exist.

They have the early intervention folks involved, but things seem

to be moving very slowly . . . lots of evaluating and then lots

more. I think they had better get started on a physical therapy

routine, which finally leads to my question. Has anyone ever

suggested a water bed or an air mattress, that wasn't inflated to

the " tight " point, to lay these little ones on for a period of awake

time.

It would seem to me that any movement would gently work almost

all muscles. Just wondering if anyone has ever tried it or had it

suggested or if it is a really rotten simple idea that an over

anxious grandmother thinks makes good sense.

Any insight you can give will be greatly appreciated.

Thanks

Carol