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  #1  
April 7th, 2009, 11:24 AM
kittycat's Avatar Platinum Supermommy
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It's been a while since I've posted here, and really need to find a place where others understand what we're going through or can maybe offer some advice. I thought I would start with a re-introduction of sorts.

My name is Katra, I'm married and have two boys, Kyle & Ian. Kyle is five, and my oldest. He was born just short of 24 wks, and spent 6.5mo in the NICU. Over the years, his physical abilties have improved, but he was officially diagnosed with Ataxic Cerebral Palsy Spring of 2008. As an infant, we had also noticed what we thought might have been staring/spacial seizures - but our pediatricians at the time dismissed our concerns as other issues, or just being a baby/toddler. When he was diagnosed with Cerebral Palsy, we were also told that he had a seizure disorder. Nothing specific, but to watch for spells similar to those that we had come to ignore.

4 months after his Dx, he became extremely sick, and had several small seizures during that time. His therapists and teachers noticed substantial regression in his skills, so we went back to the Neuro and were put on medicine at that time. The medicine was a god send in a way. Kyle suddenly began forming more complete sentenances, engaging in coversation and figuring things out far quicker than before. Because of the cloud that was lifted, we also discovered other behaviors such as ADHD.

Since that time, his seizures have also escalated with each new illness - whether it's a cold, flu or otherwise. His medicine has been increased 3 times, and we're now at the maximum dose. In the past 4 weeks, we've been in the hospital twice - each time the severity of his seizures have increased - now leading to the shaking kind, that required several nurses to hold him down, and lasted several minutes long each time.

We're currently in the process of transferring his care to the Children's Memorial Epilepsy Center in Chicago. It's a bit of a haul (over an hour one way, without traffic), but worth it if we can finally address what is going on with Kyle, and get him the support he needs - as well as the information/education we need to know what is going on.

Kyle has been in the IEP preschool program since he turned 3, and begins full day kindgergarten next year.
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DH (37) ~~ Ian 2/22/07 37wks ~~ Kyle 12/30/03 23.6wks ~~ Konner (Twin Angel) 12/26/03, 23.3 wks


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  #2  
April 7th, 2009, 12:14 PM
~~~Sara~~~'s Avatar Platinum Supermommy
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Hi Katra, It's nice to meet you and hear about your journey you've been on with Kyle. It sounds like you are in great hands, even though you have to drive, it sounds like the Children's Hospital is your best bet. We get all of Carter's treatments out of our area, if they are in Los Angeles it's 1 1/2 -2 hours drive and if it's Childrens Hospital Madera it's at least 2 hours one way. It's miserable, especially since he does not like long car rides, but I have met so many exceptional doctors there it's worth it.

75-90% of the kids with the same syndrome as Carter have seizures, but we have yet to see him have one for sure. At what age did Kyle have an EEG or MRI? We are in contact with a Neuro, but have yet to have those tests done.

How old is your other son and how it it managing both of them?
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  #3  
April 7th, 2009, 12:39 PM
kittycat's Avatar Platinum Supermommy
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Quote:
Originally Posted by ~~~Sara~~~ View Post
Hi Katra, It's nice to meet you and hear about your journey you've been on with Kyle. It sounds like you are in great hands, even though you have to drive, it sounds like the Children's Hospital is your best bet. We get all of Carter's treatments out of our area, if they are in Los Angeles it's 1 1/2 -2 hours drive and if it's Childrens Hospital Madera it's at least 2 hours one way. It's miserable, especially since he does not like long car rides, but I have met so many exceptional doctors there it's worth it.

75-90% of the kids with the same syndrome as Carter have seizures, but we have yet to see him have one for sure. At what age did Kyle have an EEG or MRI? We are in contact with a Neuro, but have yet to have those tests done.

How old is your other son and how it it managing both of them?
He didn't have his until he was 4, but we were on various Neuro waitlists for 2 years, so it would have been done sooner. It was the EEG that highlighted the Seizures, and the MRI diagnosed the Cerebral Palsy, and can help identify any scaring from the seizures. We were having him treated (therapy) as if he had CP, prior to the official DX though. Kyle didn't walk independently until he was 3.5 yo, and with a walker at age 3.

I would recommend asking the Neuro to do the EEG, just to rule out or diagnose the seizure disorder, because seizures are not always obvious (as we've found out). Kyle's for the most part manifest during sleep, and as blank staring during the day. They last anywhere from a finger's snap of time to 30 seconds. More severe ones last minutes long, with major ones lasting more than 5 minutes. Kyle's major ones have always led him to stop breathing, which is particularly frightful (we know CPR though), and until recently began as the blanking out kind.

There's another test that can be done, if after the EEG & MRI are complete seizures are confirmed. It's not available everywhere, but most major Children's centers do have it. It's called a PET Scan, and it can identify exactly where the seizures are coming from. This is for more severe diagnoses and treatment determination, but is something the new Neuro suggested might be on the list for Kyle in the coming future (they're going to retest him first on the other machines).

My other son has a speech delay (talks a lot like Kyle), is a picky eater, and has some sensory issues that we're about to begin therapy on. He just turned two, and had his eval done last week. His problems are no where near the spectrum of Kyle, so I don't want to sound as though we're not concerned - but we know that therapy can address these issues rather quickly and comprehensively. That's the upside of having gone through all the struggles to find a good therapy clinic for Kyle. Now that Ian needs it - we know right were to go.
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  #4  
April 7th, 2009, 02:25 PM
Ditzzy's Avatar Stupid Lamb;)
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I really hope the Children's Memorial Epilepsy Center in Chicago will have some answers and a treatment plan for him. Waiting is always so hard. I was also told that Ava may have seizures due to her not oxygenating, but I haven't seen any. You've had a journey!
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  #5  
April 7th, 2009, 02:56 PM
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Hi you! I'm glad to see you posting here!! Cause I never get to talk to you anywhere else...

Seriously, I'd love to see this board as a place we can all come back to when we need the support, cause just lately I've really needed someplace.
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  #6  
April 7th, 2009, 02:56 PM
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Hi you! I'm glad to see you posting here!! Cause I never get to talk to you anywhere else...

Seriously, I'd love to see this board as a place we can all come back to when we need the support, cause just lately I've really needed someplace.
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  #7  
April 7th, 2009, 02:58 PM
Deb's Avatar
Deb Deb is offline
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Hi you! I'm glad to see you posting here!! Cause I never get to talk to you anywhere else...

Seriously, I'd love to see this board as a place we can all come back to when we need the support, cause just lately I've really needed someplace.
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  #8  
April 7th, 2009, 02:58 PM
Deb's Avatar
Deb Deb is offline
I'd rather be in Forks
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Hi you! I'm glad to see you posting here!! Cause I never get to talk to you anywhere else...

Seriously, I'd love to see this board as a place we can all come back to when we need the support, cause just lately I've really needed someplace.
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  #9  
April 7th, 2009, 03:04 PM
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Can you tell JM was acting stupid?
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  #10  
April 7th, 2009, 03:04 PM
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Can you tell JM was acting stupid?
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  #11  
April 8th, 2009, 09:03 AM
Jasons_Mommy's Avatar I love my little man!!
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oh wow!! Im lookin forward to getting to know you!!
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  #12  
April 8th, 2009, 11:33 AM
Ditzzy's Avatar Stupid Lamb;)
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Quote:
Originally Posted by Deb View Post
Hi you! I'm glad to see you posting here!! Cause I never get to talk to you anywhere else...

Seriously, I'd love to see this board as a place we can all come back to when we need the support, cause just lately I've really needed someplace.
I would love to see that too! I think once people see this board is semi-active again, they will post too.
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  #13  
April 9th, 2009, 07:42 PM
kittycat's Avatar Platinum Supermommy
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Deb - Agreed.
And I'm always on Facebook
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DH (37) ~~ Ian 2/22/07 37wks ~~ Kyle 12/30/03 23.6wks ~~ Konner (Twin Angel) 12/26/03, 23.3 wks


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