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« on: August 01, 2007, 05:22:30 PM »

Sedona was doing well with all her lung issues, then we moved to Mesa AZ and she is now having Drop Seizures. This morning she had 6 in 12 minutes. Four of them she made it to the ground.

Not only do they scare us but they scare her as well. They put her on 15mg of Diazpam 2x daily and started her on Phenobarbital today. Please pray that this helps her. There are no more drugs to try and the VNS is out of the question except now she is finally having the right seizures for the VNS.  

She is still on Oxygen and now she is on 2 drugs that cause low resperation. Yepee! Not!

I will let you know how it goes.
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« Last Edit: September 08, 2007, 06:24:11 PM by Birdbomb » Logged
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« Reply #1 on: August 02, 2007, 03:29:41 AM »

Oh My!!! Bless your heart! I'm so sorry this is happening!!!! The drop seizures are by far the worst seizures for Scott. He's broken bones, had things poked and stabbed into him, busted lips and cracked open forehead way too many times. There's no warning so no time to react beforehand. Get her a Danmar helmet with a face guard and some good elbow and knee pads as soon as you can so she doesn't break a bone or get hurt badly. Scott had a drop seizure at age 5 while standing at the toilet peeing and slammed face down onto the rim of the toilet and broke his top jaw in half and several baby teeth below the gum line. He had to have emergency surgery to remove the baby teeth but they couldn't fix his jaw. It would have to heal on it's own. You can only imagine what would happen if someone who has a seizure disorder had their mouth wired shut if they had a seizure. The day after this happened he developed a severe blood infection that almost killed him. The stress of everything sent him into nonstop seizures less than an hour after they discovered the blood infection. He was in the ICU over a month and a half and in a regular hospital room another 3 weeks.
I sure hope the meds help her. Thanks for letting us know and try to keep us posted as you can. Sending hugs and prayers your way, Fay, Scott and family
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« Reply #2 on: August 02, 2007, 11:39:41 AM »

I hope the meds work. Please keep us updated on how she is doing. We care very much!

Labrat     :im_033:  ; bee ;  
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« Reply #3 on: August 05, 2007, 07:47:17 AM »

I slept in Sedona's room last night so that I could monitor her pulse and heart rate and she stopped breathing 4 times.  The phenobarbitial seems to be helping with the seizures but it is causing her respitory to slow down to the point of Hypo~ventilating. and then she stops breathing. She did wake up and take a deep breath on her own all 4 times. But it was a minute before she did so. Both Valium and Pheno is not a good combo for her.  I will have to call the neuro again.  I would like to get her off the valium and keep the pheno since it is new and her body is not use to it.
« Last Edit: August 05, 2007, 07:48:10 AM by GBean » Logged
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« Reply #4 on: August 05, 2007, 11:02:17 AM »

Is this new or do you think this is from having her VNS removed?
Scott's blood pressure normalized after he had the VNS removed but it is starting to get low again plus now his temp is also below normal. He is back having periods where he'll turn a little bluish gray but thankfully no passing out or Cerebral hypoxia attacks yet. Am trying not to worry. My heart goes out to you cause I know how scary this is. Please keep us posted and know a lot of us here are praying for Sedona. Hugs, Fay
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« Reply #5 on: August 05, 2007, 02:10:22 PM »

Fay~

I don't think that it has anything to do with the removal of the VNS, but we do know that the VNS changed her brain structure and caused the pituitory tumor to form.

This seizure activity is new and scary. She has only had petitmal seizures lasting seconds not minutes.

Sedona has not been able to regulate her body temp since the VNS was turned off and removed. She is always hot, never seen her sweat, and takes cold baths. Even in the cold weather months.

I thought that this was odd also.

Gina
« Last Edit: August 05, 2007, 02:11:06 PM by GBean » Logged
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« Reply #6 on: August 05, 2007, 06:57:38 PM »

If her medication is arresting her breathing, she needs to be evaluated.  Why hasn't the doctor put her in the hospital?  I know she is on oxygen but is she using a CPAP?  Not getting enough of the proper sleep will cause excessive tiredness and daytime sleepyness AND can cause seizure activity!

It really bothers me that she's not getting a full work up to finalize what is growing in her lungs and as to why she has deterioated to such an atrocious level!







To Sedona[/b][/font]

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"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
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« Reply #7 on: August 10, 2007, 06:30:08 PM »

Sedona is doing better this week. We talked to the neuro who decided to start the slow wean off the valium and the slow increase of the Pheno. Sedona has had her valium dose cut in half over the last 2 weeks and her Pheno is 1/2 pill 2x daily. We have not seen any drop seizures today and her petitmals are better too.

As we all know a little goes a long way with Sedona.  I hope that she can maintain good 02 stats at night with time. She still is quite shaky and walks like a drunk but at least she is maintaining her balance.

We go to Houston in Oct for her lung Biopsy.

Gina
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« Reply #8 on: August 11, 2007, 03:10:34 AM »

Thanks for the update Gina. Hope she keeps doing better.
Oct seems like a long wait to have a lung biopsy done especially when she's had these lung problems for so long now. I'd be pushing for one to be done sooner than that simply because it should have been done months ago. PLEASE keep us posted. Hugs, Fay
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« Reply #9 on: August 24, 2007, 05:57:23 AM »

Sedona is completely weaned from the valium and is on Pheno full time now with a zarontin chaser.  The pheno is working to control most of her drop seizures and she is not sleeping so much now.  We are still planning to go to Houston in Oct.  Could get in sooner but with the move we can't afford to go any sooner.  Expensive to go out of state even with staying at RMH and free travel. Co pays are terrible and other expenses put us in the negative every time.

Sedona has a terrible head cold that so far "knock on Wood" hasn't found her way to her lungs.   : emo :

 
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