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jbzanie
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P flap question for cleft kids
« on: November 30, 2010, 08:12:36 AM »

Ricky is two weeks post flap surgery.  When do you start to see speech improvements.   Right now his speech is worse than it was prior.  I feel like we lost the entire year of speech.  I use to be able to understand my 60 percent of what he said.  Now it is like 30 percent if that.

This surgery was far worse in terms of recovery than his two other palate surgeries.
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Anja
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Re: P flap question for cleft kids
« Reply #1 on: November 30, 2010, 08:50:21 AM »

Our son had to recover several weeks from this surgery. After six weeks we were allowed to start again with speech therapy, it took a couple of month to hear the progress when he talked. After a year the difference was very clear. The specialist told us that in the first weeks everything in the mouth of the child has swollen up, so we might understand him less better than before. Which indeed was the case... In speech therapy the child has to learn how to use the flap - the flap is not working by itself if you know what I mean. So don't give up hope, I think he needs a lot more time!

Regards,

Anja
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chinababy6
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Re: P flap question for cleft kids
« Reply #2 on: November 30, 2010, 08:56:15 AM »

 Agree

Our daughter sounded like Micky Mouse for a few weeks until some of the swelling went down.  Those muscles need to learn to work a little differently, so it takes some time.  If the p-flap is successful, you'll eventually see a marked improvement. 

Wishing you and your child the best! 
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hikinglorax
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Re: P flap question for cleft kids
« Reply #3 on: November 30, 2010, 08:58:56 AM »

Other people thought she sounded better from the time of surgery.  I thought she sounded like a drunk with a cold and I didn't notice the difference for several weeks.  I wouldn't worry yet
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thebigwait
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Re: P flap question for cleft kids
« Reply #4 on: November 30, 2010, 06:39:15 PM »

Okay so I am a little worried.  I need someone to school me.

DD had her one year post surgical follow-up with the CP surgeon.  He said that I should contact her ENT and have him perform a test to determine if she needs a p-flap surgery.  It all happened so quickly that I did the head nod thing and didn't think to ask questions (stupid, stupid, stupid).

What test is performed to determine if it needs to be done? 
How bad is the surgery?  same day? Overnight?
What are the risks?
How much will this set her back? 

She is a little nasally right now but her sounds are not bad.  She has been through so much I hate putting her through another surgery.  It is necessary?  She's 3 1/2 - is now the right time?  too early? too late?

I'm freaking out about it.
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doc33
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Re: P flap question for cleft kids
« Reply #5 on: November 30, 2010, 07:18:07 PM »

We did the z plasty, our dr. will not do the p flap.  Our daughter spoke MUCH better within days, full effect being a week or so out.  HOWEVER, somoe of our daughters speech issues are bad habits, so she has to reteach somethings.
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jbzanie
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Re: P flap question for cleft kids
« Reply #6 on: November 30, 2010, 08:00:11 PM »

Well we went to the dr today for followup.  He ripped the flap so it hanging and resting on the back of his tongue.  We are headed back to surgery on Thursday to fix it.



Re the flap - we had a zplasty done when Ricky was two.  It helped some.  The surgery itself took about an hour.  We had a nose revision done as well.  This was our third palate repair and was the worse.  We were in overnight. 

Our surgeon does the flap earlier than most.   Ricky is 4. 

Our speech dr who is part of the cleft team decided when to do the flap.  We only had one test in which Ricky talked into a machine.   There are other tests that can be done
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cljohnson33919
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Re: P flap question for cleft kids
« Reply #7 on: November 30, 2010, 08:51:56 PM »

Nasometry is one test they use to determine if the child is too nasal.  They wear a headset and talk into a mouthpiece.  My dd had hers done at 4 and I didn't notice any improvement right away in her speech.  I was disappointed because the ENT who did it told me we would see a difference right away.  Eventually it did help some of her sounds, but she had a rare complication from the flap.  When she healed, her nasal airway kept scarring closed in the back of her throat --it's called nasopharyngeal stenosis.  She couldn't breathe out of her nose at all, and had sleep apnea.  Finally after several failed revisions we got another doctor who made her a new nasal airway through the back of her palate.  She actually has a hole in the back of her palate that she breathes out of her nose from and she is doing so much better! 

They tell you to wait 6 months to see what you've got after a p-flap.  It seems to take quite a while to heal completely (when there's no more white in the back of the throat, it's healed) and then more time for them to learn to use the flap to make sounds correctly and use those muscles.  Even after all that, my dd who is 8 now, still has articulation problems with s,ch, z because of her teeth.  The docs tell me that a bone graft and orthodontia will improve this, so that's in our plans for this summer...
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hikinglorax
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Re: P flap question for cleft kids
« Reply #8 on: November 30, 2010, 08:52:15 PM »

Okay so I am a little worried.  I need someone to school me.

DD had her one year post surgical follow-up with the CP surgeon.  He said that I should contact her ENT and have him perform a test to determine if she needs a p-flap surgery.  It all happened so quickly that I did the head nod thing and didn't think to ask questions (stupid, stupid, stupid).

What test is performed to determine if it needs to be done? 
How bad is the surgery?  same day? Overnight?
What are the risks?
How much will this set her back? 

She is a little nasally right now but her sounds are not bad.  She has been through so much I hate putting her through another surgery.  It is necessary?  She's 3 1/2 - is now the right time?  too early? too late?

I'm freaking out about it.

For us-
we went to a clinic that specializes in VPI issues and we were evaluated by a speech therapist (expert on the topic, not any ol' therapist and an ENT)  The SLP had Little repeat a bunch of sentences, and then repeated them into a computer microphone that analyzed them based on some criteria.  After that they inserted a camera into the back of her throat through her nose and actually watched what happened as she repeated the sentences.  This test determines what specific procedure (p-flap, z-plasty, etc she needs)

Little was 4 when they did hers and I think most surgeons, etc recommend around 3-4 with some variation based on the age of the child when the palate was repaired etc.

The surgery was about 2 hours and she had to spent 2 nights in the hospital- it was kind of a rough recovery in the hospital as she wanted to go home and wouldn't cooperate and eat and they wouldn't let her come home until she ate.  Once we were home we used Tylenol for pain and she was FINE!!!

Prior to the p-flap though they had to remove her tonsils to make sure she had a big enough airway once the flap was in.

Here's how it went for us....

http://pullthisblogover.blogspot.com/2010/02/not-complete-surprise-but.html
http://pullthisblogover.blogspot.com/2010/03/we-are-home-and-she-is-eating.html
http://pullthisblogover.blogspot.com/2010/03/home-from-hospital-again.html
http://pullthisblogover.blogspot.com/2010/06/in-surgery.html
http://pullthisblogover.blogspot.com/2010/06/out-of-surgery-and-sleeping-in-room.html
http://pullthisblogover.blogspot.com/2010/06/hospital-day-2.html
http://pullthisblogover.blogspot.com/2010/06/45-ounces.html
http://pullthisblogover.blogspot.com/2010/06/back-at-home.html
http://pullthisblogover.blogspot.com/2010/11/vpi-follow-up-last-week-surgery.html
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ladybyng
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Re: P flap question for cleft kids
« Reply #9 on: November 30, 2010, 09:06:10 PM »

Jen, I am so sorry you're heading back into surgery. 

Micah had the sphincter pharingoplasty and not the p-flap.  His speech was better immediately. 

I hope that your repair next week is successful and you can move forward. 
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Mama to Double Happiness
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Son #2, 22 mo, from Kaifeng, Henan
thebigwait
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Re: P flap question for cleft kids
« Reply #10 on: December 01, 2010, 08:23:49 AM »

Thanks everyone for sharing.  I have to call the pediatric dentist this morning before I contact her ENT because DD has a tooth coming in behind her top teeth but directly in front of the fistula.  Both are very close to the front of her mouth and hard to see unless her head is in a certain position.  The cp surgeon said that tooth has to come out first, then take her to the ENT.  I am thinking that I'll give the ENT a call now though and get that ball rolling.

I don't know who is going to need a sedative more to get through all of this - me or DD.  Yesterday we were just sitting in the surgeon's office and I told her that all she had to do was open her mouth and he was going to look inside.  She totally freaked on me and would not take off her coat.  I asked her why and she screamed at the top of her lungs - "No shots!  No way Mommy!!"  (She had her flu shot six weeks ago.)  After it was all over I told her that I promised no shots and I asked her if she had a shot.  She said, "No silly. No shots.  No cry any more."  I told her that I would always tell her the truth about what was going to happen.  She shrugged her shoulders and asked for a sticker.  Sigh..........
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DD 5 yrs. Home August 28, 2009 (Qinghai Province)
DD 2 yrs. Home June 10, 2011 (Jiangxi Province)

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