|Sep 03, 2009|
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.
cricopharyngeal dysfunctionHi anyone's kid has been diagnosed with the above type of dysphagia?
also, anyone changes NGT tube twice weekly? Does it further worsen the ability to swallow or no effect?
|Sep 03, 2009|
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
|NG tube will most certainly hinder swallowing. It is very uncomfortable to swallow with the tube in the nose and down the throat. |
How long have you had the NG tube and when will the DR consider putting in a G tube to releave the uncomfortableness of the NG tube??
For us, Jedd's oral ability started with getting a G tube. About 6-10 weeks after getting the G tube, he started to take food and liquids orally. I would highly recommend getting one actually. It is way WAY WAY easier than an NG tube.
We did the NG for 8.5 months and it was pure torture. We wanted a G much sooner but our GI was horrid and wouldn't put the referral through. We switched GIs and get the surgical consult right away. We have never looked back.