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It's NOT apraxia! (The End?)

Posted by on Apr. 1, 2010 at 11:06 AM
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 This is a follow-up to my post "If it's not apraxia..." Alyssa had her 4-year-old exam today, and the doctor was really worried about her speech. I told her "yeah, she's been in speech therapy for apraxia since she was 2."

That's when the doctor said "It's not apraxia." She checked out all of Alyssa's motor skills, had her sing a song, count, move her tongue around, and various other things. Then the doctor told me that she thinks it's a medical issue with Alyssa's palette, or maybe a "cranial nerve" issue. She referred me to an ENT and said we need to get her checked out by the ENT, who might send her to a nerologist if it turns out to be the cranial nerve issue.

The doctor also said we need to be sure to get Alyssa into some "CONSISTENT" speech therapy, which means not settling for the therapy offered through the school system, because that therapy will end in June for the summer, and her therapist will change in the Fall.

I'm still confused, and a little frustrated that we've been treating Alyssa for apraxia that she probably doesn't have, but this new diagnosis, I think, is good news. Anyway, I just wanted to thank all you moms for the support and advice. I will let you know the final outcome, but right now the ENT doesn't have an available appointment until June. :-(

by on Apr. 1, 2010 at 11:06 AM
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Replies (1-10):
candicesimmons
by on Apr. 1, 2010 at 1:36 PM

Glad you are getting closer to answers. Isn't it crazy how long you have to wait for doctor appointments?? Last month I made an appointment for a developmental ped and the first available was in August.

LoriLou75
by on Apr. 1, 2010 at 10:36 PM

 My school has to give my son an extended school year, so he never has summer vacation. You should check out your state laws. IDK whether the new dx is good or bad, I think that on the up side, she has been making progress. Good luck, keep us updated!

LadyJag
by on Jun. 19, 2010 at 10:17 AM
Guess what? Alyssa had her appointment yesterday and the dr. said her palate is fine. However, he said her tonsils are HUGE, and might be getting in the way of her palate and tongue. Wha...?!? Could it really be something as simple as tonsils? Poor baby will need to have her tonsils and adenoids out, which the dr. said may or may not be the sole problem but is at least a step in the right direction. This is so crazy. I'm hopeful but suspicious of this new dx.
MamaJane
by on Jun. 21, 2010 at 9:40 PM

 Why don't you see if you can get a referral to a neurologist?  That's the most acurate way to dx Apraxia.  That's very frustrating but by golly it would be so awesome to be such an easy fix.

mynameismuerte
by on Jun. 21, 2010 at 9:57 PM

That's nuts!  That would be awesome if it helps her.  Good Luck & keep us posted!!

Quoting LadyJag:

Guess what? Alyssa had her appointment yesterday and the dr. said her palate is fine. However, he said her tonsils are HUGE, and might be getting in the way of her palate and tongue. Wha...?!? Could it really be something as simple as tonsils? Poor baby will need to have her tonsils and adenoids out, which the dr. said may or may not be the sole problem but is at least a step in the right direction. This is so crazy. I'm hopeful but suspicious of this new dx.


Amie, SAHM to 3 handsome little guys.

LadyJag
by on Aug. 5, 2010 at 4:55 PM

 Alyssa's surgery was last week. Just a 30-minute outpatient procedure, an hour in post-op recovery, and then we were sent home. Man, how tonsillectomies/adenoidectomies have changed!

Anyway, we won't know if the procedure resolved her speech issue for another 6-8 weeks. Alyssa's palate has to "re-learn" how to lower against the back of her throat instead of against her huge tonsils. This week, her speech has actually been worse, which we expected. She is breathy and nasally and it's like we've "lost" a year or more of speech therapy, which is VERY frustrating.

However, I have high hopes, and now that Alyssa's in week 2 of recovery, she's getting back to her old sweet, sing-songy self. I asked the pediatrician "what if this doesn't resolve her speech issues?" and she told me she and the ENT would work together to get Alyssa into PRIVATE speech therapy (our insurance wouldn't cover private ST before).

So even if the operation doesn't completely solve our problem, at least Alyssa won't have to get stressed out by getting bussed to a public school for therapy, where her therapist puts her in time out for crying during the session.

LadyJag
by on Sep. 23, 2010 at 10:18 AM

Well ladies, I think Alyssa's story is going to have a happy ending. It's been nearly 2 months since Alyssa's surgery, and friends and family have commented on how remarkably clear my sweet girl's speech is now. Yay!!

She is still in speech therapy, but I suspect this might be the last year she needs it. There is a new speech therapist working with Alyssa now, since the previous one (the one who put her in time-out for crying) left to have twin girls. According to Alyssa, she shares the therapy sessions with 4 other kids.

The bussing situation has improved this year as well. Now, instead of boarding the bus at 7:15am and riding around town for an HOUR before getting to speech therapy, the bus picks Alyssa up at 7:45 and drops her off at speech 20-30 minutes later. Better still, Alyssa's private school teachers now put her on the bus, so there's no more separation anxiety, crying, and clinging to Mom or Dad. Her teachers tell me that she does GREAT getting on and off the bus and always does so with a smile. I'm so proud of her!

If Alyssa DOES still need therapy after this year, a therapist will go to her school since she'll be in Kindergarten. So this will be the very last year of bussing for her, and she will no longer be enrolled at 2 different schools.

The only drawback right now is that Alyssa misses her favorite class, music, on Tuesdays. The music director arrives at her class from 8:30-9:00, which is the same time as Alyssa's therapy. I asked Alyssa's teacher about this, and she said that yes, Alyssa misses class with the music director, but as a teacher, she incorporates music and dance into the daily ciriculum as well. And since Alyssa also takes a weekly ballet/tap class after school, I'm ok with this arrangement for now.

Alyssa's first field trip of the year is next week. Unfortunately, the bus that takes her class to the trip location leaves the school while Alyssa is in speech therapy. However, I spoke with Alyssa's teacher, and she doesn't see any problem with Alyssa joining the other pre-k class, since the other classes' bus won't leave the school until after Alyssa is dropped off from speech therapy.

Ashersmommee
by on Oct. 22, 2010 at 8:42 PM
Wow, what an update! I'm so glad Alyssa's doing better in school and that she has a therapist that isn't hindering her anymore. That's WONDERFUL that her speech has become so much clearer after surgery! I wish it could be that easy for all our children. Your pediatrician deserves a big kudos for even knowing what Apraxia is and how to recognize the differences he saw in Alyssa.
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LadyJag
by on Oct. 24, 2010 at 9:23 AM
Quoting Ashersmommee:

Wow, what an update! I'm so glad Alyssa's doing better in school and that she has a therapist that isn't hindering her anymore. That's WONDERFUL that her speech has become so much clearer after surgery! I wish it could be that easy for all our children. Your pediatrician deserves a big kudos for even knowing what Apraxia is and how to recognize the differences he saw in Alyssa.



Thank you, and I couldn't agree with you more...on all parts!
berlgirl1224
by on Oct. 25, 2010 at 2:41 PM

i understand that you are upset that you have been treating her as though she has paraxia whe in fact, she does not. but hey, as least you have been treating her. she has gotten great services, right? and you have done a great job, i'm sure. you were worried and did what any concerned, good mother would do, you tried to get her help. way to go, and i hop that whatever help you get now works for you as well. keep us updated.!

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