laryngeal cleft repair ?

Mbitner

Hi!  Aiden has his repair a year ago in March.  A follow up bronch showed the repair still in tact.  Aiden has been in SLP/Swallow therapy since 6 months of age.  He still aspirates on thin liquids.  We have tried the aggressive approach...which didnt work.  Now we are gradually (I mean REALLY slowly) thinning his drinks.  His ENT most recently told me it may take years for him to get used to the thin liquids and to tolerate them without aspiration...until now the ENT has always said that he should be able to swallow w/o aspiration and he doesnt know what it is taking so long.  Any thoughts?  Anyone else take a longtime (ENT says typically takes 6 weeks to 6 months) to learn to swallow with corrected anatomy?  Thanks! 

abqMacaroniKid

I would am interested in hearing more about this as well. My lo's doctors are pretty certain my lo has a laryngeal cleft. I havent talking to anyone that has had a child with it so I am glad to "meet" you.

amybowns

Hi there!

 My LO had her cleft repair a week ago today. We stayed in the hospital for 5 days and they didn't let her drink anything by mouth for 4 days (She had an NG tube in). Her repair was done using a robot (apparently one of the 1st few in the world to have a robot used on a cleft repair) and all went great. No surprises or complications. Now that she is home, she is still eating by mouth, but is throwing up a few times a day from coughing, but sometimes it looks like severe reflux. Is this kind of what you were talking about when you said your LO threw up a lot? Not fun. She didn't really throw up while we were in the hospital...how long did it take for it to stop with your LO?

 Anyways, one thing I wanted to ask you is if you have tried VitalStim? I've heard it has great results in adults and is used on kids too. It's an electrode that is placed on under the chin or on the cheeks and it works out the mouth and face muscles to strengthen them so that your LO would be able to have more muscle control to control his swallow to prevent aspiration. It's intense in that it's at least 3 sessions a week for at least 45 min, each. The therapist has to be certified to use it and they do oral motor exercises or feed while the vitalstim is on. Our daughter didn't mind it at all except for when we had to take the electrodes off of her. (They are like stickers).

 We used it for 2 months with our daughter, before we knew she was aspirating because of her laryngeal cleft. Now that she has it repaired, we know that she still might aspirate, but hopefully the strengthening of those muscles we did for the last 2 months will help her swallow successfully. We would definitely re-visit it as an option if she continues to aspirate.

BoilerUp1

I am an SLP.  I graduated from the top school in the nation for Speech Language Pathology.  I would HIGHLY caution you against the use of Vital Stim.  It is contraindicated in MANY patients and can impair the nerves to where the patient is no longer able to swallow.  NO research has proven its efficacy in adults and NO research on the use of VitalStim in children has been published as of yet.  Cincinnati Children's is currently doing a major study on VS in kids but early results seem to indicate that its risks more than outweigh its benefits.  The muscle fibers that are activated during VS are different from those that are activated in swallowing, so the basis of the treatment is shaky at best.  I don't want to upset anyone but I DO want everyone to be an informed consumer before undergoing this type of "therapy." 

abqMacaroniKid

Thanks for the great info! I was told about it but denied because I didnt think it would help in our lo's case and glad I did because sure enough it would not help her due to the fact of why she aspirates, and the info you just gave!!

BoilerUp1:

I am an SLP.  I graduated from the top school in the nation for Speech Language Pathology.  I would HIGHLY caution you against the use of Vital Stim.  It is contraindicated in MANY patients and can impair the nerves to where the patient is no longer able to swallow.  NO research has proven its efficacy in adults and NO research on the use of VitalStim in children has been published as of yet.  Cincinnati Children's is currently doing a major study on VS in kids but early results seem to indicate that its risks more than outweigh its benefits.  The muscle fibers that are activated during VS are different from those that are activated in swallowing, so the basis of the treatment is shaky at best.  I don't want to upset anyone but I DO want everyone to be an informed consumer before undergoing this type of "therapy." 

AKELLY511

My daughter just had her laryngeal cleft repair done Monday, also by a robot.  She's been able to swallow thickened liquids, but not thin.  The doctor has said it "may" help her aspiration.  We are starting thinner liquids next week. Fingers crossed!  I also have never met anyone who has experienced this problem. 

BoilerUp1

I'm glad I could help.  Let me know if you have any other questions.  I have treated quite a few babies with Type 1 & 2 Laryngeal Clefts and am more than happy to help!

markromera

Hi,

My name is Mark and we have a six year old son who has Laryngeal Cleft  Type I...

We have created a website where parents can find more info about this rare anomaly and get in contact with other parents to exchange experiences and info.

 Our site is https://www.laryngeal-cleft.com

We also created a support group : https://laryngeal-cleft-support-group.ning.com/

Anybody who has interest is welcome to join our support group for free.

Good luck with the struggle for proper info and adequate help for your children.

 Mark