Laryngeal Cleft Kids

Parent to Parent support for kids with dysphagia and laryngeal clefts

Latest Activity

Kelsey Van Der Kley replied to Kelsey Van Der Kley's discussion Nose bleeds???
"I should have updated this. The reccommendation was to lean her far forward so the blood runs out not back, apply pressure high on the bridge of the nose, cold cloth on the back of the neck an dif needed ice cubes on the nose to help the blood…"
Mar 4, 2012
Amanda McKnight and Marcos Antonio are now friends
Mar 4, 2012
Amanda McKnight replied to Kelsey Van Der Kley's discussion Nose bleeds???
"I do not know the answer Kelsey, but I certainly hope that Sydney is doing better now!"
Mar 4, 2012
ilhan updated their profile
Feb 24, 2012
emmy jane dingwall and Elizabeth are now friends
Jan 23, 2012
Elizabeth posted a status
"genetic testing neg"
Jan 22, 2012
Kelsey Van Der Kley posted a discussion

Nose bleeds???

Sydney had her first real nosebleed today. There was so much she was choking, coughing and spitting blood out. I know she aspirated, we could hear it.Just wondering if there is any better way to deal with them. We tilted her head forward, pinched her nose and put a cold cloth on the bacl of her neck. But pinching the nose made more blood run down her throat. We had to let go because she was struggling so bad plus she was panicing.Does it take less time for the body to break down the blood in…See More
Jan 21, 2012
Marcos Antonio posted a discussion

European Laryngeal Cleft Support Group

Hi to you all,My name is Mark and I am the proud father of our 7 year old son who has Laryngeal Cleft Type I. We live in The Netherlands, Europe.As most of you know proper information about Laryngeal Cleft is hard to come by.Therefore initatives like the Laryngeal Cleft Kids Ning page are more than welcome.For years I have also been bussy in collecting information about this rare anomaly to be able to determine the possible developments of our son's cleft and condition. A very helpful medium…See More
Jan 8, 2012
debbie gideon posted a status
"my son has a larnygeal cleft stage 3. he is having surgery in feb. can anyone let me know what to expect. thank you"
Jan 2, 2012
debbie gideon updated their profile
Jan 2, 2012
debbie gideon posted a photo
Jan 2, 2012
JANESE FRITZ posted blog posts
Dec 30, 2011
Kelsey Van Der Kley posted a blog post

Our Story

My daugther Sydney was born full term, healthy weight and size. She had troubles feeding from the begining.  By 3 months old she had a "cold" or so I was told. This was an ongoing cycle for 18 months with our family doctor. I finally had enough and called our local Children's Hospital (The Stollery in Edmonton, Alberta Canada). After explaining what was going on they saw her the next morning.  She had a chest Xray and they saw "junk" in her lungs. Started her on an inhaler and scheduled a…See More
Dec 30, 2011
Erin Gildea posted a blog post

Supraglottoplasty

Thomas had his supraglottoplasty on January 10.  He was cleared for honey thick liquids!  We go today to follow up, he does seem to be in some pain and we are not sure if it is related to his throat, teething or dehydration.  He did forget how to drink and is not interested.  I think that was the most frustrating thing of all of this... we had no guidance or help regarding feeding therapy and nutrition.  And, of course, we really don't want the tube back, so hopefully we can figure something…See More
Dec 30, 2011
Antoinette posted a blog post

Swallow Study this Thursday

Hi, My son Tommy has hopefully his last swallow study at Children's Hospital scheduled for this Thursday.  Since my last post in Sept when Tommy was still aspirating anything less than honey thick, we have been very slowly reducing the consistency of his liquids.  We currently do not use any Thick It and even challenge him with some water now and again.  He still coughs sometimes with the water but seems to handle everything else very well.  Dr. Haver, his pulmonologist, recommended that we…See More
Dec 30, 2011
Amanda McKnight posted blog posts
Dec 30, 2011

Members

A support group made up of parents of babies and children with laryngeal clefts or dysphagia of unknown causes.

 

Forum

Nose bleeds??? 2 Replies

Sydney had her first real nosebleed today. There was so much she was choking, coughing and spitting blood out. I know she aspirated, we could hear it.Just wondering if there is any better way to deal…Continue

Started by Kelsey Van Der Kley. Last reply by Kelsey Van Der Kley Mar 4, 2012.

European Laryngeal Cleft Support Group

Hi to you all,My name is Mark and I am the proud father of our 7 year old son who has Laryngeal Cleft Type I. We live in The Netherlands, Europe.As most of you know proper information about Laryngeal…Continue

Tags: cleft, laryngeal

Started by Marcos Antonio Jan 8, 2012.

Reflux and G.I. question - 7 Replies

I was told many times that with the lc repair it is so important that reflux be controlled. My almost 3 year old daughter's reflux often gets out of control. We have adjusted her diet and fixed her…Continue

Started by Margaret. Last reply by Kristina Sep 14, 2011.

Simply Thick Recall by FDA 1 Reply

FYI - http://www.fda.gov/Safety/Recalls/ucm257841.htmContinue

Started by Antoinette. Last reply by Kelsey Van Der Kley Jun 10, 2011.

Blog Posts

Sensory nerves out of sync

Michael had another swallow study today and we saw something different than ever before...he actually had trouble with the solids.  There was penetration and then on a potato chip it stuck where his periform(spelling ?) sinuses are and he didn't even notice or show typical signs of what should happen when a hard object gets lodged in an area where it shouldn't be.  The therapist explained it as though his nerves do not respond appropriately, a sensory delay in the oral area.  I'm not sure…

Continue

Posted by Amanda McKnight on September 19, 2011 at 8:50pm — 12 Comments

Michael's update-Not what we wanted to hear!

After our visit to Shands in Gainesville we were left with the following:

   Drs: "We can't find any other structural defect other than the Glottal chink, which can not be repaired, but even with that something is going on above that for the liquid to even get to that point, so here's what we feel is happening...Michael has an incoordination with his oral motor skills, rather an incoordination with his swallow that is allowing liquids to pass the epiglottis and seep into the opening…

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Posted by Amanda McKnight on June 2, 2011 at 9:04pm — 2 Comments

Tyler's Swallow Study

Tyler had a swallow study yesterday and passed with thin liquids for the first time EVER! All of the waiting and frustration FINALLY paid off WITHOUT having repair surgery. I wasn't sure it was going to happen, but it did! We have an appointment at the CADD clinic next week with Dr. Rahbar. Thinking of all of you!

~Michelle

Posted by Michelle on May 3, 2011 at 7:42pm

Swallow Study

Hi Everyone!

Just wanted to post that Tyler has a follow-up swallow study tomorrow afternoon and we are praying that he passes (obviously, isn't that what we all do lol!). It's been about 6 months since his last one and he's been doing REALLY well with thin liquids (no surgery, just slowly thinning). He hasn't had thickener in quite a while, so we'll find out tomorrow if he is still aspirating.........I really don't think he is, but I don't want to jinx it! I will post the results…

Continue

Posted by Michelle on May 1, 2011 at 10:41pm

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