ENT update

hcs_mom · #1 06-24-2009, 07:13 PM

We had a very productive appt yesterday. He had my email and went through everything I asked him.

He is not overly concerned about the impact of any underlying connective tissue disorder right now. There are still several areas that he can tweak by laser at this time. So, he did not mention open airway procedures at all. (I had myself totally worked up on that one all day Tuesday. Our appt was at 5:30 yesterday.)

He has referred her for CAPE testing for Central Auditory Processing Disorder. Essentially her hearing is normal, but her brain just doesn't "process" what she hears, correctly. He described it as a "dyslexia" of the auditory system. The testing can't be performed until she is 6 due to normalizing. She turns 6 in early August. But, we are sorta ahead of the game. Her school is well equipped to deal with this and I have been in touch with them. Even if this isn't the issue, there is something not quite right with her hearing, so we will modify the classroom where needed to make sure she has every chance to succeed. I think this can also be called Auditory Neuropathy.

Her right vocal cord is scarred and has very little movement. There isn't much we can do about this right now, as any effort to improve this area would negatively impact the airway. So, we will have to deal with the current voice short term, but long term, we have options, we just need to get to a point where we can breathe that sigh of relief with regards to the airway.

We have a tentative surgery date for end of Aug, but I'm thinking that may change. He said it may take 2-3 procedures to get her to a point where we can leave her alone for a little while.

Thanks for sticking with me if you made it this far.

Jen

suzanne2545 · #2 06-24-2009, 08:18 PM

Glad it was a positive and relieving appt. What are the "tweakings" they can do?

scm · #3 06-25-2009, 07:36 AM

Yes, I am also interested in what the tweaking is since I recently learned that Max, too has a paralyzed vocal chord which is now being labeled as the cause (well, one of the causes) for his need for cpap at night....
keep us posted!

JWorthington · #4 06-25-2009, 12:55 PM

Glad it wasn't a scary as you expected and hope the tweaking helps and Hannah can catch a break for a while

hcs_mom · #5 06-25-2009, 02:32 PM

For those interested in the tweakings,

There are several areas in her airway that are a little floppy still. When he does the MLB immediately prior to the lasering, he said he will "poke around" and see what area would get us the most results. That is the area he will start with. Basically, he is trying to get rid of enough of the floppy tissue without overdoing it and creating an even bigger problem.

As for the vocal cord, the right cord is on the same level as the false vocal cord. There is little movement with the right cord. He didn't specifically say what could be done, only that intervening to improve the vocal cord/vocal quality situation would negatively impact her airway status right now. Addressing the vocal cord/quality issue is a long term goal.

I will scan in the photos from her MLB in May and you can see some of the areas.

mama_rfva · #6 06-26-2009, 10:19 AM

My 7 year has CAPD and dyslexia..... we did a speech eval and he could not repeat numbers fowards (failed at 3 digit strings), but asked to repeat them backwards and he tested at a 12 year old level. His handing writing is often backwards and a lot of other things. He is super smart though once you get through the obstacles, we home school and he is doing 3/4th grade work easily, but in a classroom they were thinking about holding him back in kindergarten!!!!

DId they talk to you about reinnervation? Or resilyn therapy?

Abigail's left is completely paralyzed, but we were told that anything more they could do after lasering, just wasn't possible till her airway was larger.

Cheryl