Posted By Posting
Apr 21, 2009
jarenemum
Mom to 26 month old baby girl. Born at 33+weeks. Severe GERD, dysphagia (even to saliva), central hypotonia. Unable to do MRI due to requirement for G.A. and intubation risks. Docs mentioned chin is on small side which does not help with swallow. Currently 10.6Kg and 83cm long. Able to sit independently, pull to sit and sit up on her own. Able to stand with support and pull/push to stand. Can cruise. Started to crawl on April 1st 09. Babbles a lot but not saying real words yet. On early intervention programme. Communicates with a lot of gestures and finger pointing. Very intelligent. Swallow study done on 11/9/08 shows no initiation of swallow but is allowed to continue with food tasting which she thoroughly enjoys. Second swallow study done in Jul 09 shows she can swallow 2 teaspoons out of 4 tea spoons of yoghurt given. But it shows some muscle coordination issues between oro motor, throat and sphincter which causes food to queue up prior to entering stomach. Feeds through nasal gastric tube. On 3 times a week private speech therapy with vital stim since June 09 and once a week Physio with local hospital. We practice with her everyday on our own which saw more progress. Couldn't get into our preferred special school for EIP due to lack of teachers and long queue for spaces. Am looking for alternatives now.
Speech Therapy, Talk Tools, Vitalstim
hi all, anyone whose child has been on Speech Therapy? Am finding a suitable one for my child. She has trouble swallowing even her own saliva and I am having trouble finding the right speech therapist for her as her swallowing issues I understand are not so easy to rectify. I need help on the following: 1. What are the key things to consider when selecting a ST 2. How many times a week should therapy be 3. Anyone tried Vital Stim for dysphagia? 4. Anyone tried talk tools? 5. Anyone to share what goes on during Speech Therapy? If your child has similar swallowing issues, please contact me.
Apr 21, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Sorry it took so long to get back here but I wanted to wait until everyone was asleep so I wouldn't be interrupted.

As far as Vital Stim is concerned.....#1 make sure an ST or OT does it and you NEED to check and ask to see their certificate for that type of stimulation. Not just any OT or ST can use it. They have to take a course on how to use it properly. So ask to see the certificate before allowing them to use it.

#2 Vital Stim CAN be VERY productive therapy for children with dysphasia. The therapy is best when the child eats while it is being used. That way while swallowing, the muscles are being stimulated by the probes.

I know a Mother who has used this on 2 of her children with great success.

Children also tend to need to work up in the length of time they can tolerate the therapy as well. The first time out will be short and as the weeks go on the sessions can get longer.

As far as speech sessions, we do OT for feeding issues. You may want to go with an Occupational Therapist versus an reg. ST because swallowing involves the muscle groups not speech issues. JMHO and what we did. We made sure our OT had ALOT of background in working with kiddos with feeding issues.

When Jedd was pretty much completely tube fed, we would run his feed through the pump and while that was running (30mins) we did alot of oral stimulation with oral motor tools. Jedd really liked this alot. Once he tolerated that pretty well, we moved to trying to get him to take bites of food.

We had great success when we finally moved to just concentrating on getting him to take his formula though. We used syringes to help him to take small small amounts at each sitting. Once he was taking enough to qualify as a meal, we cut out those tube feeds where we could.

We stayed on formula ( a next step one) for a while when we worked on foods.

I will say from person experience that oral motor tools are VERY VERY important when it comes to tube fed kids. I firmly believe this because they need to get all the oral stimulation that they can because they don't use those muscles since they don't eat.

Check with your
doctor first!