E-Stim swallowing therapy w/ Marcy Freed worked!!!

[Guest guest]

Amy, what GREAT news for you and your son! You're right, God Bless that

woman.

So glad for you all.

Love Lana

[Guest guest]

If anyone has a swallowing problem... please read on!!!

My son, Bobby, 2yr 9mo, has had over 20 pneumonia's due to aspiration

from swallowing and reflux. He has been tube-fed since 18mo old, but,

was still allowed a little solid food every day to avoid a food

aversion and keep up his oral motor skills. He is developmentally

normal in every other way. His sister has Ehlers-Danlos Syndrome, a

connective tissue disorder causing very loose joints, unusual skin and

excessive bleeding.... and it is thought he possibly has the same and

it showed up more internally, even though he has the external also.

To make a long story short... a lady emailed me last year about a new

therapy for swallowing in Cleveland....well, it has now been FDA

approved and we just got back! The wonderful woman that discovered and

performs this miraculous therapy is Marcy Freed, an SLP at Rainbow

Babies Hospital in Cleveland, Ohio. I'm sure many of you have heard of

her.

I am writing this to let everyone I can know that Electrical

Stimulation Therapy worked for my son!!!! and for many others we saw.

We stayed at the Mc House (which was excellent!!) and

took a short shuttle ride everyday (Mon-Sat) for 12 - 1 to 1 1/2 hr

treatments. Marcy put the electrodes on Bobby's neck and worked with

him on swallowing fast! He said it tickled.... although he hated the

tape (Marcy says they all do ). We were very lucky, he had everything

going for him.... no oral aversion, capable of following instruction

and the fact that he really wanted to drink!!!

My son's previous video swallows showed that with every consistency,

except a few solids, he had a delayed swallow where some of the bolus

would hang around the area of the epiglottis and some would go in the

lungs and some would eventually go down. He had residue and pooling.

He only swallowed one time per mouthful and had to be reminded to

swallow more to get it all down. He had no protective cough and

wouldn't even blink when it would go in wrong. It is believed that he

has a sensory problem and doesn't realize food still needs to be

swallowed. He doesn't taste food unless it is very sweet, salty or

spicy.... bland foods were the worst.

Bobby's video swallow after all his E-Stim treatments was

unbelievable!! He swallowed FAST and perfect!!! I had no idea that was

how fast he should have been swallowing! He also now has a protective

cough!!! When a little even starts to go in wrong, he coughed!! Marcy

said as long as he keeps up the swallowing of all the consistencies,

he will not lose his ability to swallow safe! Use it or lose it!! The

electrical stimulation just shocked those muscles into doing what they

should have known to do!!

Bobby's g-tube will come out in a couple of months and we are forever

grateful to one of the kindest people I have ever met, Marcy Freed!!

She is not only determined and dedicated, but she truly loves what she

is doing to help people... and to top it off.... she KNOWS what she is

doing!!!!

If anyone would like more information..... I would be happy to talk!!

We saw her helping young and old..... physically and mentally

challenged and those with only a swallowing problem.... We saw her

help a 20 mo old to finally swallow her own secretions and not have to

drool and spit and sputter, JUST TO BREATH!!! Bless her heart!!!

My son is so happy he can drink now.... he cheers with his cup

constantly!!

So CHEERS to swallowing!!

Amy Marek

themareks@...

[Guest guest]

That is remarkable Amy, I am so so happy for all of you!

Jill

[Guest guest]

Thanks so mcuh!!!

Amy - a very happy mama!!

> That is remarkable Amy, I am so so happy for all of you!

>

> Jill

[Guest guest]

Thanks so much!!!

Amy - a very happy mama!!

> Amy, what GREAT news for you and your son! You're right, God Bless

that

> woman.

> So glad for you all.

>

> Love Lana

>

>

>

[Guest guest]

To Amy and the Little Guy,

Congratulations! That is so great! Cheers!

Love, Sue Ginley

[Guest guest]

Congratulations Amy! Progress is a wonderful thing!

Love y'all, Janet : )