JUDY FROM THE BLOCK

JUDY FROM THE BLOCK

Saturday, July 23, 2011

A as in Apple....... B as in Boy....... C as in Cat....... D as in Destini......E as in Epilepsy!


The first words out of my mouth was, "WHY HER?"

I was speechless and a little bit lifeless when the hospital confirmed what Mr. Camel and I had been fearing for a couple of weeks.  

I guess I need to backtrack a little....

It was in April of this year that I noticed Destini making very odd neuromuscular movements with her right arm along with a little head jerking, clenching her jaws, grinding her teeth.  To a mom it seems like it is lasting for an hour, when in reality it was very quick, then a catatonic state, and then would snap right back to what she was doing with her toys, or eating, or whatever she was doing at that time. 

At first, I really thought it was just that she got "over-excited" about things.  I mean like she gets easily excited just when she hears the theme song from Two And A Half Men.  My neice was like that when she was Destini's age, getting "over-excited" I mean.

Though I blew it off that day, I did mention it to hubby when he came home from work about it.  I demonstrated to him exactly what I witnessed her do.  He too thought maybe "over-excited."  

A couple of days later, it happened again back to back.  Again, to a mother it seems like it's an hour when in reality it's as quick as 15-20 seconds.  I really panicked this time!  I called hubby and told him that I am not seeing things, it's not "over-excitement," I truly believe I have witnessed her having seizures.

Hubby, though he was not doubting my word had not actually seen this for himself.  So, he was, shall we say troubled but not panicked like me.  Hubby came home but, Nothing!  He later was feeding Destini dinner that night while I was in my home office doing some work.  The next thing I know is him coming down the hallway to my office standing there saying, "I saw it."  Now, he was panicked!

I called the pediatrician the next morning, who saw her that day.  I explained to him exactly what we were seeing and witnessing, in which he said it sure sounds like seizures.  He got us "referred" quickly to a Pediatric Neurologist at Barrow's Neurological Institute.  However, the neurologists office was backed up until June to see her.  TWO MONTHS!  I found out there aren't a lot of Pediatric Neurologists in Arizona and that is why the wait would be so long.  I had no choice but to take that appointment because another office was backed up until October!!  I am dead serious!

Day by day, the seizures went on to occur, becoming more and more frequent and more in intensity as well.  It was now to the point where Mr. Camel and I were about to pull our hair out.  I was crying every day, every second, every minute, especially right after she would have a seizure.  It was gut-wrenching to watch, so much so that the next day when she had a seizure, I said Fuck this (excuse my language)!  June my ass!  I packed her up and took her to the ER, and am so glad that I did! 

They too witnessed back to back seizures and were very concerned.  That only made me cry more because I knew that moment, that second, my baby really was having seizures!  WHY HER? 

The ER got things in motion!  They contacted the pediatrician who was to see us in June and he said, either have her transported to St. Joseph's Hospital now or he would see her first thing Monday morning in the office.  This was on a Saturday.  After a discussion between me and Mr. Camel, we decided that we couldn't bear to leave her in the hospital for 2 days without us.   We took the Monday morning appointment.  

We watched her closely, she slept with us those 2 nights, we did everything the hospital told us to do before her appointment on Monday. 

Monday came, and during her visit to the neurologist she experienced 3 seizures back to back to back.  The neurologist no doubt was witnessing her having seizures and said, "She has EPILESPY BEHAVIOR with possible AUTISTIC features."  My heart sank!  WHY HER?

He immediately started her on Keppra drops (anti-seizure meds) 1 mL, titrating every 2 weeks up to 3 mL, and also set her up at Phoenix Children's Hospital (where he was moving to) for an EEG of her brain:


In the meanwhile, I am going through some surgeries of my own, though that didn't seem near as important to me as what Destini was going through, until my own doctor, after now putting me on an anti-depressant and anti-anxiety medication because I was absolutely LOSING IT, said to me "You got to be healthy for Destini."  I went through with my colonoscopy during this time period, in which 5 polyps were found but thankfully were all benign.   

(Of note, I was blogging every day about anything and everything during this time, except for what was really bothering me the most, which was my baby having seizures).  

As the weeks went on and titrating her dose of Keppra, we definitely are seeing improvement in  not only the seizure intensity but the frequency as well, and her speech!  The neurologist brought it to our attention that Destini was also clearly speech delayed and that her motor skills were not up to par for a child her age, probably due to the seizures; but he wanted to rule in or rule out the possibility of something other than just the seizures causing her delay. 

This past Friday, she underwent an MRI of her brain at Phoenix Children's Hospital.  Probably one of the scariest times for me and Mr. Camel, besides watching her have a seizure, was the thought of her having to undergo anesthesia for the MRI to be performed.  I have to say the anesthesiologist made us feel so comfortable about the procedure, though I still cried, of course! 

Desi and daddy right before going into her MRI:
 

The hardest thing I have had to hear the neurologist say so far - besides confirming our worst fears of her having seizures - was that, "Only time and time Alone will tell us if she will go on to worsen, improve on the Keppra alone or another medication, or perhaps outgrow the seizure."  TIME!  Not easy to hear that!  You want your child to be fixed, like a boo-boo, make it go away.  But all we can do is testing after testing, and waiting.  Keeping her seizure free is our main priority at this point.

I've taken FMLA from my job.  I don't know how this will impact our lives right now.  I do know that as cautious as we were before with her, this just made it more intense for us to want to smother her.  

I will say, again, with the Keppra - while titrating the dose - we are seeing excellent responses so far.  She will begin speech therapy after we get the results of the MRI back.  Also some occupational therapy to help with her gait (walking and running).

I told you all in my last post that there was a HUGE elephant sitting in the room that we were walking around and over it.  Both Mr. Camel and I were in denial!  We didn't want to talk about it or share it with a whole lot of people.  Well, we aren't in denial any more!  I'm saying it outloud:  

Destini has Epilepsy...




5 comments:

  1. My prayers are with you and your family. My son had seizures when he was very young and grew out of them by time he was about 8 or 9. So, keep your head up, your heart open and let God work.

    Lionel

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  2. Praying for your little girl and the whole family. This is not easy to deal with! I couldn't imagine if this were my child. Stay strong mommy!
    Jackie
    htp://www.sahmcity.com

    ReplyDelete
  3. I'm so sorry my friend. Praying for her & for you.

    ReplyDelete
  4. I'm sorry I hadn't read this before. I hope she will grow out of this. You are doing everything for her and being the best parents you can. My friend had this with her little boy about the same age and he did grow out of it. He was also put on the same med. Thank you for sharing this. I am praying for all of you and the health of all of you.
    Barb

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