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  #1  
April 29th, 2009, 12:01 PM
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Ava has been referred to Neurology because we (her pediatrician, therapist and I) think she's having absence seizures.

What kind of seizures does your LO have? What tests did their neurologist do? I know they'll do an eeg and she's having an mri next week. Is there anything else they'll do?
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  #2  
April 29th, 2009, 06:36 PM
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We have done the eeg and the mri as well. Most times they will start with the short eeg(about an hour long) then if they can see episodes, they will do a long one (3-4 hours). They will also want you to try to get her to sleep during the eeg, so they can see that activity as well

I'm not sure what they do from there. They found issues on our mri but they are not linked to seizures, so we went in a different direction.
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  #3  
April 29th, 2009, 06:40 PM
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I am so sorry you are experiencing this. I am terrified of seizures, 75-90% of kids with Carter's syndrome have them of all varying types, but we haven't seen evidence of them in Carter yet and I hope he is the small percent that escapes them.

We have met with a neurologist as prevention, but we haven't done the EEG or MRI yet as regardless of what they find, it will not change anything. They may be able to start meds for Ava, but those scare me too as I don't want anything that makes Carter groggy.

Good luck and keep us posted.
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  #4  
April 29th, 2009, 11:59 PM
kittycat's Avatar Platinum Supermommy
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Quote:
Originally Posted by Ditzzy View Post
Ava has been referred to Neurology because we (her pediatrician, therapist and I) think she's having absence seizures.

What kind of seizures does your LO have? What tests did their neurologist do? I know they'll do an eeg and she's having an mri next week. Is there anything else they'll do?
Kyle has the same ones - those were his more frequent ones. We've been told that somewhere around 50% of the kids with his form of CP have seizures.

When he was little, our pedi kept telling us it was nothing - or his lack of response was due to needing new ear tubes, etc. Turns out we were right, he was seizing (blank staring, night terror-like behaviors, etc). Over the past year, Kyle's have worsened. He's particularly suseptible to ones brought on by exhaustion and over heating (he has difficultly maintaining his body temp). He's now on Trileptol to help manage the day to day (and we've seen incredible developmental improvements since), but it's the seizures he gets when he's sick or having temperature issues that are getting out of control. He's now crossed over in to the more violent and dangerous forms of seizing (it took 3 nurses to hold him down last time). He also stops breathing during the really bad ones (we know CPR though - which is a must). So we're off to the Epilepsy center at Children's for more review.

Over the past year - with the other Neuro, we've had the 1 hr, 3, and 24hr EEgs, an MRI, and a CT. He's on schedule for a new round through Children's in July for comparison. They might do a PET after that, depending on results. For the EEGs, Kyle had to be sleep deprived, prior. For the MRI and CT - nothing special. They did have to sedate him (mildly) for the MRI. Just a little something in to his g-tube to make him relax.
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Last edited by kittycat; April 30th, 2009 at 12:03 AM.
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  #5  
April 30th, 2009, 04:58 AM
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Thanks for replying. I'm so glad she's getting an MRI next week. It was ordered for another reason, but thankfull nonetheless. She'll be sedated too (twilight, I think). This is all getting overwhelming.
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  #6  
April 30th, 2009, 11:28 AM
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mri's arent bad at all, and the light sedation isnt bad either. I know it is overwhelming, but you will make it through
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  #7  
April 30th, 2009, 11:46 AM
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Originally Posted by mrshowdy View Post
mri's arent bad at all, and the light sedation isnt bad either. I know it is overwhelming, but you will make it through
Ditto.

The EEG can be more complicated with some kids, because they pull at the wires. Fortunately that wasn't an issue for us/Kyle.
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  #8  
April 30th, 2009, 12:29 PM
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Ditto as far as the MRI is concerned... Danny came out of that light sedation so easily, even though he was under for quite a while between his CT scan and MRI. I know that doesn't make you feel any better though!
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  #9  
April 30th, 2009, 12:43 PM
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The MRI itself isn't overwhelming. It's everything together. kwim? She'll be sedated on Monday. put to sleep on Tues and Wed. the fact that she has to see a neurologist along with all the other specialists. She's trying to see all the different specialties, I guess.

I've had eegs and I know they're not bad. Ava is used to wires since she's had them all her life.
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Last edited by Ditzzy; April 30th, 2009 at 05:44 PM.
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  #10  
April 30th, 2009, 05:30 PM
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I absolutely know what you mean about all of it combined being overwhelming. We feel that way too sometimes, like we have seen every doc in the hospital.
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