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Practical Advice - The collective experience of the BRIGHT Foundation members.

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Feeding Issues & Feeding Tubes
 + Speech Therapy  
            + Marcy Freed Electrical Stim 
            + Traditional Speech Therapy - Not complete  
 + G-Tubes 
            + Tube or No Tube?? - Not complete 
            + Tube or No Tube?? - Not complete 
For Fun:

We found this on one of the listserves! Please pass it on.

You know you have a child with a brain injury when..........

You compare ER's instead of grocery stores.
You compare your child's oxygen saturation.
You view toys as "therapy.'
You don't take a new day for granted.
You teach your child HOW to pull things out of the cupboard, off the bookcases, and that feeding the dog from the table is fun.
The clothes your infant wore last fall still fit her this fall.
Everything is an educational opportunity instead of just having plain old fun.
You cheer instead of scold when they blow bubbles in their juice while sitting at the dinner table (that's speech therapy), smear ketchup all over their high chair (that's OT), or throw their toys (that's PT).
You also don't mind if your child goes thru the house tooting a tin whistle.
You fired at least 3 pediatricians and can teach your family doctor a thing or two.
You have been told you are "in denial" by at least 3 medical or therapy professionals. This makes you laugh!
You have that incredible sinking feeling that you've forgotten SOMETHING on those few days that you don't have some sort of appointment
You get irritated when friends with healthy kids complain about ONE sleepless night when they're child is ill!
Your vocabulary consists of all the letters OT, PT, SP, ASD, VSD, IFSP, etc.
You keep your appointment at the specialist even though a tropical storm is raging because you just want to get this one over with.....you
waited 8 months to get it.....and besides, no one else will be there!
Fighting and wrestling with siblings is PT.
Speech therapy occurs in the tub with a sibling.
When potty training is complete, you take out a full-page public notice in the Washington Post.
When the Doctors/Specialist/Hospitals etc. all know you by your name without referring to your chart.
You keep a daily growth chart.
You calculate monthly statistics for the number of times your child vomits, and did this for more then one year.
You phone all your friends when your child sits up for the first time, at age two.
With a big smile on your face you tell a stranger that your four year old just started walking last week.
Her medical file is two inches and growing.
You have a new belief.....that a




Speech Therapy 

Marcy Freed's Electrical Stim

Marcy is a speech therapist at Rainbow Babies and Children's Hospital in Cincinnati,  OH. Marcy's direct line is 216-844-7283.  Marcy has been using low voltage electrical stim to try to stimulate and strengthen the muscles of the throat.  For some, this treatment has been a large success.   However, my belief is that it works best on a select few.  I have not spoken to any parents who's children have benefited.  Most of the success stories have been with adults.  My guess is that adults that have had the sensation of coordinated swallow, but lost it due to cancer, stroke, etc., respond well to Marcy's treatment because in effect it is a "jolt" back to what they remember.  For infants that never learned coordinated swallowing it seems like it can make matters worse.  In our own experience, we tried e-stim on Alissa at 4 months of age.  She had a very weak such swallow and was being feed 100% via ng-tube.  Marcy places several electrodes on throat muscles with tape and proceeded to turn on the juice.  The muscles contract in response to the current.  For Alissa, my guess is that the placement of the electrodes were not ideal and simple contraction of random muscles was not enough to produce a coordinated swallow.  What we saw was in increase in saliva and for the first time in her four months, she started to aspirate and de-saturate.  Marcy was not too concerned about e-stim causing the symptoms but she conceded that it did not appear that e-stim was helping Alissa.  Marcy felt the de-sats might be caused by reflux.   We stayed at Rainbow for about three weeks try to get to the bottom of why the de-stats started.  After PH Probes, video EEG's and other tests we still did not have an answer.  Luckily, after about two weeks her sats came back to per e-stim levels (98-100%) and all of the tests were negative.  Then we took Alissa home with an even weaker swallow and wondering if had made a big mistake.  In reflection, we placed too much faith on a quick cure.  We should have stuck to the traditional speech therapy approach and slowly and consistently introduced her to more and more oral stim.  E-Stim may work for some but I would wait until you have some foundation of swallowing and then build on it with the e-stim.  

We welcome other's to add their experiences on e-stim for swallowing.  Either post them at our discussion board or e-mail them directly to maplg@ourpostbox.com.

Treatment & Research
 + Conductive Education. 
 + Traditional Therapy: PT, OT, etc. - not complete  

Conductive Education

Here is a discussion of the strengths of Conductive Education Therapy.

C.E. is a different way of looking at a child or person with motor disabilities. It doesn't just look at the tight calf muscle, for example, but the whole child. Rather than focusing on what doesn't work, C.E. looks at what the child can do, and should strive to try to do. The goals are not unreasonable - some kids never talk, or stand independently. BUT it gives each child the opportunity to try and do more.

From a cost perspective, Conductive Ed is about the same cost as HBOT.  So it is not cheap.  However, several parents have commented that they have seen better results with CE than with HBOT alone.  One center in Canada, called the Ability Camp offers both CE and HBOT at the same location.  

People who have used C.E. tends to support it very strongly.  But, the same can be said for many of the treatment programs that we come across here at the BRIGHT Foundation.  It is our opinion that the results you get are proportional to the effort you put in.  If you believe and really work hard at any treatment, if it is CE or HBOT.  You are likely to see results.  

People who have used C.E., comment on the changes that they see in a short time.  They comment that their kids are excited to try new things, and love to go to "school" with their buddies.

As in all therapies, the therapist (or in the case of CE the conductor) has a great influence on how the sessions turn out.  It is important to be sure that the parent is very clear what they like for their child. 

We welcome other's to add their experiences on CE.  Either post them at our discussion board or e-mail them directly to maplg@ourpostbox.com.



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