Re: swallow/ElecStimtherapy-

[Guest guest]

Thanks so much for the info. How interesting!!!!!!!

Betsy

[Guest guest]

Ann thanx for the info, I am going to call Our ENT says if its a muscular

issued than it may be good (he doesnt know enough about it yet but he is

researching it) but he says if its a neuro issue than it prob. wont work,

like you said it is worth a call. We to our so frustrated,

CAthie, mom to

[Guest guest]

Cathie/Bestsy etc.

I think this is the post you were looking on electronic stim. therapy in

Cleveland. I'll attach it. below.

Ann Gloyn, DB Specialist

& Cathi-

You are asking a very strongly biased person about whether I think this will

work.....I have all the faith in the world that this is a worthwhile, life

enhancing procedure that can ASSIST and AWAKEN your child's swallowing

function. The best person to ask is Marcy, the therapist who actually does

the procedure. When you call her, she can pretty much tell you whether it

would be a good situaiton for your child or not. In thinking about it, I

remember being so desperate for SOMETHING for my son, as the doctors told me

that there was no hope for him ever swallowing, that I begged and pleaded

and told my story (I'm sure my son's medical condition fit the criteria or

she wouldn't have let us come) just to get the chance to help him swallow.

We took a huge financial risk and went out there not knowing whether or not

it would work. And, it was only after several months of extensive dietary

therapy that everything eventually clicked. My son was very resistent to

foods. I am very passionate about this as a lot of people do not even know

about this. I hope this information helps you. P.S> If I remember right,

the sessions were $100/hour and I can't remember how much the dilitation

cost.

Electronic Stimulator Therapy ( " stim " ) is a non-evasive, painless electronic

" awakening " that is done typically in 1 hour sessions. The electrodes can

be placed on the outside of the neck, in the vocal cord area, on the larynx,

under the chin and on the mouth area to stimulate and awaken natural muscle

movements. (Everything is EXTERNAL) (I am sure that there are many other

areas that Marcy can awaken, also.) Our son, Wendell, took a total of 11

treatments-done on 11 different days (1 hour each), and had a

cricopharyngeal dilatation (stretching of the esophagus-same day surgery). I

cannot praise this therapy enough. It gave our son the ability to swallow.

We followed the treatments with extensive dietary therapy to get him

switched over from tube to oral feedings. Keep in mind, Wendell was born

with total vocal cord paralysis and inability to swallow. He had a feeding

tube before he left the NICU until he was 3 years old. If you are

interested in this therapy, the best thing to do would be to give Marcy

Freed a call and explain in brief what swallowing/esophageal problems you

child has and she will get with her supervising doctor to discuss your

child's medical condition and get back to you to let you know if your child

is a candidate. All it takes is a phone call-we figured we didn't have

anything to lose-and it was very successful. If you have any further

questions or we could be of any help in any way to you, please feel free to

contact us. I would love to know if anyone in our CHARGE Syndrome

Foundation group is going to go and what the outcome is. I also have the

name of a wonderful dietician that helped us do all of the really hard

work-getting Wendell to eat. She did most of our consultations over the

phone and e-mail.

University Hospitals of Cleveland

Rainbow Babies Unit

11100 Euclid Avenue

Cleveland, Ohio 44106

Attention: Marcy Freed phone: or

______________________________________________________

Re: swallow-Betsy

> From: NPTQueenie@...

>

> Hi Betsy, also likes food and has no oral adversions. She just has

> trouble effectively swallowing, she swallows but she is unable to clear

all

> of it. We give her only pureed food. SHe LOVES her water bottle. Her

> speech path. work with swabs in her mouth w/lemon, ice cubes etc. to get

her

> to swallow better. Dr. Cottons office did a FEES study and she did some

> swallowing but not alot (who would w/a proble in their nose) its like thte

> bairum swallow who would swallow while chalky barium??? she drools a

bit,she

> has facial pasly on the R. I also wonder about the trach causes more

> secretions. The pulmonligists agrees but also says not to the degree that

> she has secretion problems. The Speech Pathologists work with her and I

work

> w/her every day, so shes geeting work alot but htere has to be more we can

> do. There is a place in Baltimore Hopkins we were looking at bu I

hear

> it is more for children w/behavorial eating problems. Someone on this

page

> was talking about Electronic Stim. Therapy done in CLeveland, but I dont

have

> any more info I keep asking but I am not getting a response. Dr. Cotton

is

> good but if s problem is secretions there isnt much he can do. It is

> VERY frustrating. We are capping her but she seems to be no tolerating it

as

> much as we though she could, the secretions pool. talk to you soon.

> Tomorrow we are going for nose dilation and aanother bronch. her ENT here

in

> NY is going to give us his opinion.

> cathie, mom to

[Guest guest]

CAthie, if her swallowing is a neurol. issue how can they tell that? Being

that she has facial palsy isn't that considered neuro?

Betsy