RE: Re: Brushing therapy & an introduction

[Guest guest]

Hi ,

My son Evan has been getting VitalStim Therapy weekly for the past 6 months.

Progress is slow, but it has happened over time. Evan's vocalizations are much,

much louder vs. prior to therapy. He is better able to handle his secretions

(some of this may be due to him getting older as well)--we used to not be able

to leave the house without a portable suction, and we haven't used it at all in

the past 3 months (and we only had to break it out for a week because he was

sick). I think he is more aware of his mouth and tongue and actually wants to

taste foods. He is still 100% g-tube fed at this point, and it's going to be a

long while before he eats orally. I think he will eventually, but I don't have

any idea when " eventually " will be.

I think whether VitalStim " works " depends on what your definition of sucess

is. If ours was soley eating orally then I would say it hasn't been very

successful. But for my son, secretions were a huge issue, and based on that

alone I would say that the treatments have been worth doing. VitalStim is like

most of Evan's other therapys--over time there is definately a benefit, but we

have never seen any over-night success with any therapy.

(mom to Evan, 22 months)

errcoupons eroundtree@...> wrote:

Hi,

I have a 20 month old CHARGEr, Rose. I'll get my questions

out, then I'll introduce her in a second. I've been signed on to

the list since she was born and have periodically read through the

postings. We've had a " relatively " easy time so far, but I was

interested in a couple things and have finally decided to jump in.

I was interested in the brushing therapy, since we have just started

it a week ago. I do it 3 times a day, probably will for 6 weeks or

so (per her OT's suggestion). Her vocalizations seem to be louder

and her hands are slightly less sensitive already. What kind of

results have people seen who have tried it?

My other question is regarding Vital Stim therapy. We have just

started speech therapy with her and her therapist mentioned it to

help get her to swallow (she is g-tube fed, nothing by mouth). I've

already had one of her doctors say it's not worth trying. It does

seem like a major time intensive (and cost?) for something that

only " might " work. I was wondering if anyone has tried it and their

thoughts. She has progressed well in all other areas except

swallowing. She can only have barely a taste of anything and

sometimes we can give her something in the mesh bag type feeder.

Now, to introduce – she was born Oct. 3, 2005, our second

daughter (our other one is 3 ½). We live in Virginia. My husband is

a music director at a church, and I stay at home with the girls and

do some part-time administrative work from home. We too had no idea

anything was wrong before was born. I had a scheduled c-

section, and as they were cleaning her up, they had problems

suctioning her out. We were very fortunate in that the

neonatologist on duty at the time suspected CHARGE right away – he

even mentioned it to me while I was still in the recovery room (low

set ears, choanal atresia, facial palsy [which went away in the

first 24 hours]). So he knew all the test that should be done. They

gave us the print out from the Charge website, which was a bit

overwhelming. But slowly we were able to figure out what 's

issues were, and we were spared much by the fact that none of her

major organs were really effected. So the bottom line is: Coloboma

(bilateral) – but seems to be able to see well, Choanal Stenosis

[repaired], Cranial Nerves – swallowing, Floppy voice box (much

better now), Low set ears, Hearing loss (received hearing aids at 5

months – right ear is about 65dB, left is about 105dB), Hypotonia

(mostly in trunk, arms and legs ok, but hands are sensitive to

touch, so delaying her interest in crawling. Rolls well – the one

thing she did `on time' at 5 months), High Palate, Developmental

delay, Tiny PDA (not really an issue), Heart murmur [gone], Acquired

Torticollis [fixed], Plagiocephaly [fixed]. Her only surgeries have

been nasal stents placement (at 10 days old)/removal (at 2 months),

G-tube and Nissen (at 1 month); and tubes in her ears (at 15

months). She was in the hospital for about 7 weeks when she was

born. The only other hospitalization was for a reaction to a mix of

antibiotics, which, shall I say wiped out the good, the bad and left

the ugly. She became dehydrated so she spent 36 hrs. in the

hospital getting IV fluids. She's had OT since she came home from

the hospital. We have just added PT and speech (in March).

seems to be quite happy, but will let you know if you do something

she doesn't like. I feel like there is so much more to say, but if

you would like to see pictures and more of 's history/progress,

we have a Carepage site: www.carepages.com – RoseRoundtree. We

are planning to attend the conference in July and look forward to

meeting many of you there.

-

Mom to Elise (3 1/2), (Charger, 20 months), and wife to Ben

(for 6 years).

>

> I've meaning to mention this just as an interesting thing to

note. I'm not

> sure of the significance. We did Brushing Therapy with Aubrie

when she was

> little but never did it very regularly.

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

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[Guest guest]

wow ur story as many people on here r similar to others ive read and many

others would agree with me in sayin she seems mild compared to many others

we know here im am sever to mild type of charger got heaps of probs but all

controlled now with jsut medical vists and our own minds lol hugs ellen 21

in aus

>

> Hi,

> I have a 20 month old CHARGEr, Rose. I'll get my questions

> out, then I'll introduce her in a second. I've been signed on to

> the list since she was born and have periodically read through the

> postings. We've had a " relatively " easy time so far, but I was

> interested in a couple things and have finally decided to jump in.

> I was interested in the brushing therapy, since we have just started

> it a week ago. I do it 3 times a day, probably will for 6 weeks or

> so (per her OT's suggestion). Her vocalizations seem to be louder

> and her hands are slightly less sensitive already. What kind of

> results have people seen who have tried it?

> My other question is regarding Vital Stim therapy. We have just

> started speech therapy with her and her therapist mentioned it to

> help get her to swallow (she is g-tube fed, nothing by mouth). I've

> already had one of her doctors say it's not worth trying. It does

> seem like a major time intensive (and cost?) for something that

> only " might " work. I was wondering if anyone has tried it and their

> thoughts. She has progressed well in all other areas except

> swallowing. She can only have barely a taste of anything and

> sometimes we can give her something in the mesh bag type feeder.

>

> Now, to introduce – she was born Oct. 3, 2005, our second

> daughter (our other one is 3 ½). We live in Virginia. My husband is

> a music director at a church, and I stay at home with the girls and

> do some part-time administrative work from home. We too had no idea

> anything was wrong before was born. I had a scheduled c-

> section, and as they were cleaning her up, they had problems

> suctioning her out. We were very fortunate in that the

> neonatologist on duty at the time suspected CHARGE right away – he

> even mentioned it to me while I was still in the recovery room (low

> set ears, choanal atresia, facial palsy [which went away in the

> first 24 hours]). So he knew all the test that should be done. They

> gave us the print out from the Charge website, which was a bit

> overwhelming. But slowly we were able to figure out what 's

> issues were, and we were spared much by the fact that none of her

> major organs were really effected. So the bottom line is: Coloboma

> (bilateral) – but seems to be able to see well, Choanal Stenosis

> [repaired], Cranial Nerves – swallowing, Floppy voice box (much

> better now), Low set ears, Hearing loss (received hearing aids at 5

> months – right ear is about 65dB, left is about 105dB), Hypotonia

> (mostly in trunk, arms and legs ok, but hands are sensitive to

> touch, so delaying her interest in crawling. Rolls well – the one

> thing she did `on time' at 5 months), High Palate, Developmental

> delay, Tiny PDA (not really an issue), Heart murmur [gone], Acquired

> Torticollis [fixed], Plagiocephaly [fixed]. Her only surgeries have

> been nasal stents placement (at 10 days old)/removal (at 2 months),

> G-tube and Nissen (at 1 month); and tubes in her ears (at 15

> months). She was in the hospital for about 7 weeks when she was

> born. The only other hospitalization was for a reaction to a mix of

> antibiotics, which, shall I say wiped out the good, the bad and left

> the ugly. She became dehydrated so she spent 36 hrs. in the

> hospital getting IV fluids. She's had OT since she came home from

> the hospital. We have just added PT and speech (in March).

> seems to be quite happy, but will let you know if you do something

> she doesn't like. I feel like there is so much more to say, but if

> you would like to see pictures and more of 's history/progress,

> we have a Carepage site: www.carepages.com – RoseRoundtree. We

> are planning to attend the conference in July and look forward to

> meeting many of you there.

>

> -

> Mom to Elise (3 1/2), (Charger, 20 months), and wife to Ben

> (for 6 years).

>

>

> >

> > I've meaning to mention this just as an interesting thing to

> note. I'm not

> > sure of the significance. We did Brushing Therapy with Aubrie

> when she was

> > little but never did it very regularly.

>

>

>

--

stand up and speak up!!!!!!! and dont let the world hold you back just go

for it

[Guest guest]

-

Rose sounds so wonderful! Can't wait to meet you all in CA!

For us, Brushing didn't give any obvious results. I think it just improves

her " centered-ness " and reduces her sensitivies. But I have no examples to

illustrate that. The fact that you are already seeing changes is

outstanding. The fact that Aubrie loves it so much is enough for me to

believe that it's beneficial in ways I can't idnetitfy. If you read about

the brushing therapy and read about the nervous system in CHARGE, they seem

like a match made in heaven. I can't see any downsides to trying it - it

doesn't take much time, no fancy equipment, etc. And the benefits will

hopefully be huge. Starting so young with , you may never be able to

say what benefits came from Brushing, which came from other therapies, and

which came from maturation.

I hope others will have stories with something more concrete for you.

Not much help - just ramblings -- but it's a place to start, I guess.

Michele W

Aubrie's mom

[Guest guest]

,

Welcome to this list. Your sure has had a go of it. I am sure that

when you get to the conference you will be amazed at the wonder of all the

children and how others will see the amazement of . You'll find more

family there than you ever thought possible.

I have used brushing therapy on a few students and am now using it with yet

another child. I am sure you are trained but make sure you follow the

protocol specifically. We do it close to every 2 or 3 hours depending on the

child. It worked wonders for a many kids. It took a while before we could see

the immense benefit from it, but we did.

Bonnie, Mom to Kris 24, Patty CHARGE 22, and wife to

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