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What is scarier than being in a Hospital? Being Home…

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Wednesday, September 14, 2011

What is scarier than being in a Hospital? Being Home…

Fact:  Alexander has seizures.

Fact:  They can border on the “uncontrollable” side and last for hours.

Fact:  We have not had a seizure since 2011 that has not resulted in an emergency helicopter transportation to the hospital and more medication than we can administer at home to break it.

Fear:  IF it takes 9mg of Valium, 1mg of Ativan, 100mg (? that seems too high? but I know it was 100ml) of IV Keppra, and 2 loads of Phosphenatine (have no idea of the doses there…. they are only referred to as IV “loads”) to break a seizure in 5 hours…. how long would Alexander seize without the medicine?IMG-20110913-00293

Fact:  Alexander has not had a seizure since June… so we were lulled into a sense of false security.

Fact:  Alexander’s seizures have a distinct look.  Eyes OPEN and semi-rhythmic jerking of all limbs while his eyes gloss over.  He becomes pretty rigid and jerks. = SEIZURE.

Fact:  Sometimes, Alexander looks like he is having a seizure and he is not.  When he sleeps, his arms sometimes rhythmically jerk.  These are monoclonic sleep issues.  They are almost like the newborn “sleep reflex.”  These are NOT seizures.  We had an EEG done last spring.  Even though they resembled seizures, there was no seizure activity in the brain. 

 

Everyone clear so far?  Awake = seizures.  Asleep = startle reflex.

 

At the end of Alexander’s seizure yesterday – something shifted.  After all that medicine – Alexander had different a different seizure.  His eyes were open and unfocused (seizure), but his arms and legs convulsed in quick tremors.  These looked completely different than the big jerks we’ve always seen.  I believe this difference was due to the massive amounts of drugs ripping through his system.

 

Fact: We’ve had 3 more “episodes” since last evening at 10 pm.  One episode over night and two today.

Fact: All 3 episodes were – eyes closed, but the arms and legs convulsed in quick tremors.  A completely different pattern again. 

Here is the question: IMG-20110913-00298

Are these – sleep episodes that have different body jerks due to all the drugs?

or…. Are these seizures that have eyes closed due to all the drugs?

One moment – everyone is in agreement – seizures.

Next – everyone is convinced it is sleep… (except me).  And we are discharged.  (Did I mention the ER was overflowing with people in the hallways and no more rooms?)

 

Fact: We are home.

Fear: The episodes are not sleep episodes…. they are seizures.

Fact:  I am afraid.  Tonight will be a long one.  I can’t wait for our seizure dog. 

One final Fact:  We survive on the foundation of support.  People just continue to support us.  Our hearts overflow.

14 Comments:

At September 14, 2011 at 9:03 PM , Blogger jen@its all about me said...

Kristen,
Before I drifted off last night my thoughts turned to you and Alexander.
I prayed for both, I will do the same tonight! Thinking of you....

 
At September 14, 2011 at 9:17 PM , Blogger Heather said...

I don't even know what to say. I'm nervous for him, and for you and Ray through what might be a very long and difficult night. It stinks not to have answers and especially to think you might have been too quickly dismissed because of staffing issues. We don't have any experience with seizures (yet? hopefully never), so I have no answers or suggestions, but please know that I will spend some time on my knees this evening lifting him up in prayer.

 
At September 14, 2011 at 10:00 PM , Anonymous Kim said...

Praying for Alexander. Leo had his first seizure last night since being part of our family. We knew seizures could go with their syndrome, but it was scary to see and his only lasted 2 minutes. I have enjoyed reading your blog as I can now relate to a lot of what you write about since adopting Leo.

 
At September 14, 2011 at 10:22 PM , Anonymous Caitlin said...

I am scared for you too. Call the neurologist. Just say he is seizing frequently and you want him observed as an inpatient and hopefully hooked up to an EEG machine. Video tape the episodes. I very much agree they are seizures. With Ramona I always say, "if it looks liek it COULD be seizure activity, and we already KNOW she has epilepsy and multiple seizure types...why doubt anything is a seizure?" And every time that has been confirmed by EEG sooner or later. Trust your gut. Call the doctor and get him to a hospital, or if it doesn't seem an emergency, get his meds adjusted further and see how he does in the next couple days. Sometimes a broad-spectrum benzo is used daily for these kind of breakthroughs. Mona has been on Tranxene (Valium's cousin) daily for 5 years, originally because of major breakthrough seizures during a different medication change. It is very "hypoallergenic". Just a thought. Of course that was not enough and neither was loads of other drugs but it DID help a lot and I believe t still does. I hope hope hope things start looking up. Thinking of you all tonight!

 
At September 14, 2011 at 10:46 PM , Blogger Eric, Erin, Elsie and Emmy said...

You are in my thoughts tonight, for Alexander that there are no seizures and for you all to get rest. I am with your friend, if you even think it is a seizure, cal the dr!

 
At September 14, 2011 at 10:56 PM , Blogger Kristy said...

I am thinking about you guys all the time. I am so sorry that Alexander has seizures and for all that everyone has to endure. Sadly, I have no answers to give you except that if it looks like a seizure then treat it like it is one. Stay strong tonight. I will be praying for you all. Hugs!

 
At September 14, 2011 at 11:58 PM , Blogger Hilary said...

Oh sweet Alexander! I'm so sorry!! Thinking of all of you!

 
At September 15, 2011 at 3:59 AM , Blogger My New Normal said...

It all sounds very scary. Thinking about you both.

 
At September 15, 2011 at 4:44 AM , Blogger susan said...

I'm thinking about you guys all the time too. So glad you have a great support system... it's hard to feel like your friend from the other side of the world when I can actually DO nothing. I am definitely a DOer!

I can't wait for you to get your seizure dog too :)

hope YOU are ok xx

 
At September 15, 2011 at 7:35 AM , Blogger Kerry said...

He is so beautiful. Those pictures make my eyes well up because he is perfect. He shouldn't be dealing with this. We are sending all our love to your beautiful family and that strong, perfect little boy. It sounds so incredibly frustrating. To NOT know what is happening and what the triggers are at this point.

We love you so much.

 
At September 15, 2011 at 8:30 AM , Blogger Krista @ Not Mommy of the Year said...

Oh my. Thinking of you. Praying for your sweet boy. HARD.

 
At September 15, 2011 at 1:08 PM , Blogger Helene said...

Oh Kristen, after reading this post, I went back and read the last two prior to this and here I sit in tears, just such strong emotions after reading your words.

My heart goes out to you. I look at Alexander's pictures and he is so incredibly tiny and sweet...so innocent.

I'll keep you all in my prayers, especially your son.

 
At September 15, 2011 at 7:49 PM , Blogger Meredith said...

Praying.
Hard.
Sending love, hugs, warm cups of hot chocolate, blankets, and foot massagers.
(Wishing I really could send all of them...)

 
At October 24, 2011 at 10:03 PM , Anonymous wendy @ mama one to three said...

oh gosh. I wish I could help. I hope you guys are doing well tonight!

 

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