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adding PT and "zoning out" :/

lemen99lemen99 member
in Preemies

Andrew is currently in OT and ST, and we did decide to add PT.  Thanks to everyone who chimed in to my post last week. I appreciate it. I think it'll be a good thing. 

Andrew "zones out" a lot and now the ST brought it up.  She thinks we should bring it up to his NICU /neuro doctor and suspects minor seizure activity, which of course scares me.  :/  Of course we knew this (or other things) could happen because of his level 2 and 4 IVHs, but were just hoping and praying for the best.

I feel like as soon as we think "oh, he's doing so much better, we're out of the woods!" something else comes up. It's not as dramatic, but the roller coaster hasn't ended yet!!

In better news, he's really starting to get how to talk!  he had 2 words prior to 18 months (and didn't babble really at all) when we got his eval done.  He's been in therapy for 6 months and this month has said about 8 new words!!  It's so cute!  She believes that he has a large oral-motor breakdown (knows he wants to talk but can't do it), not a speech delay, and says he's progressing very well considering.

 

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Re: adding PT and "zoning out" :/

  • ssg73ssg73

    Sorry for the continued roller coaster.  Ella had to be seen for possible seizure activity at about 11-12 months.  It turned out not to be seizures but it was so scary.  I was pretty much freaking out.  We had to go for two eegs at Children's.  One was a 24 hour and we had to stay overnight.  I hope that you can get some answers.  It took a call from one of the neos (we are friends now) to get an appointment so be prepared to fight to get into see a neuro.  I was seriously considering going to med school to become a neuro since I think the wait was going to be about that long.  I will be thinking of you guys.

     Great news on the new words.  E finally is "getting" this whole talking thing.  She had about 4 words at 15 months and has finally started adding words at a reasonable rate the past few weeks.

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  • kar5162kar5162 member

    I hope PT works well for you.  D had to go in for an EEG a few weeks ago for possible seizure activity.  He too zones out fairly frequently and is at risk due to PVL (small brain damage from birth), likely from preemie+lack of oxygen on delivery from a tight cord.  He only had to do the 1.5 hour awake+asleep EEG.  Luckily it came back perfectly normal so they didn't need to do the overnight EEG at this point...they'll continue to monitor him more closely, but aren't worried for now.  Hopefully it's true if he's having some, but the ARN he sees regularly in Neurodevelopmental at our Children's hospital said the absence seizures will cause delays, but won't cause actual brain damage like the grand mal ones can so that's good at least. 

    Right I am thinking D is just a more tired kid than most who, although super social and loves to be around people, gets worn out and overstimulated fairly easily, so just zones out to cope.  He has always been much sleepier than many other kids we know (though super happy when awake) and still sleeps better at night and naps more during the day then the rest. 

    And yay for new words!

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  • njdcgirlnjdcgirl member
    It's always interesting to hear from you moms of older preemies and to see what we might have in our future. I'm sorry the rollercoaster continues and I hope you get some answers soon about the zoning out. I hope it is not seizures. It sounds like his ST is making a real difference so that is great! By the way, I just have to tell you that I love your pics! Andrew is a ham!
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  • luvdv8luvdv8 member
    I just wanted to chime in about Andrew's speech issues. I had a friend whose full term LO wasn't speaking AT ALL at 2.5 years old. He understood what you were saying and passed all his hearing tests but he just would not talk. They said he had a speech disconnect, that he had the mental capacity and most of the motor skills to speak but couldn't put the two together and simply wouldn't try. Then one day he said a word. Then a week later another word. Then words were coming almost daily and being connected together. Now, he's 4.5 and you'd never know that he had speech issues- he talks just like any other kid his age. Once he put all the skills together he just started spitting it all out- the extra months of listening to everyone around him talk helped him build up quite the reserve vocabulary. I hope that you see the same progress with Andrew- and just keep talking and talking, because even if he isn't using those words yet he's storing them somewhere!
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  • AVA0908AVA0908
    Great news about Andrew saying more words! I know the feeling of still being on the roller coaster ride. Our issues continue with ROP related things and acid reflux and DS is almost 3. Just keep hoping for the best-I have always said that preemies are the most resilient kids I have ever known.
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  • lemen99lemen99 member

    imageluvdv8:
    I just wanted to chime in about Andrew's speech issues. I had a friend whose full term LO wasn't speaking AT ALL at 2.5 years old. He understood what you were saying and passed all his hearing tests but he just would not talk. They said he had a speech disconnect, that he had the mental capacity and most of the motor skills to speak but couldn't put the two together and simply wouldn't try. Then one day he said a word. Then a week later another word. Then words were coming almost daily and being connected together. Now, he's 4.5 and you'd never know that he had speech issues- he talks just like any other kid his age. Once he put all the skills together he just started spitting it all out- the extra months of listening to everyone around him talk helped him build up quite the reserve vocabulary. I hope that you see the same progress with Andrew- and just keep talking and talking, because even if he isn't using those words yet he's storing them somewhere!

     

    This is exactly what they are saying about andrew and what they said would happen with his speech. He is smart and understands everything, and you can see him trying to say something and he knows what to say, but just can't.do.it.  Now he's starting to spit things out left and right!!! :) He can identify almost anything in any book, he has all his books memorized, he understands almost any command I give him, listens to no, he just has to figure out how to tell us stuff!

     

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  • lemen99lemen99 member
    Thanks everyone.  it sounds like maybe zoning out can be more common and "normal" among preemies. I'd posted on my local board and not really gotten anyone who said their kid did that.  I always thought he was getting overstimulated or tired.  I feel like he does it a lot during therapy or in his high chair.  Eating is hard for him and he does get overstimulated easily. I am going to keep a log. Hopefully that will help.
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  • kar5162kar5162 member

    If you have a video camera, you might also want to video tape him doing it a few times.  That way if you decide to take him into a neurologist, you'll be able to show them an example of what you're talking about.  For me, it can be really hard to decribe in words what they are doing, in a way a medical person can understand what I mean.

    So glad to hear his speech is coming along!

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  • lemen99lemen99 member
    great idea.  Why didn't I think of that!?!?
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