Mom takes charge of seizure care

Rosalie has had a rough 2 weeks.

Rosalie has been blessed with Autism and Epilepsy.  Her seizures started as an infant and have never been 100% under control, even with medication.  For the first 7 years of her life she had partial complex seizures.  Brief staring spells with an altered state of consciousness.  They weren’t that big of a deal when they only occurred a few times a day while on medication.

But for the last 10 months Rosalie’s seizures have changed.  First it was a new type of seizure that left her unbalanced, uncoordinated, confused (or mildly emotionally distressed – it’s hard to tell with an autistic child) and exhausted.  During these episodes, which had lasting effects for 5 – 6 hours, she lost the strength in her left leg.

 

24 hour EEG

 

Then she had her first Grand Mal seizure.

Then one morning as she was snoring away in bed next to me, her left leg went stiff and bent at a 90 degree angle, and she made a weird gutteral noise in her throat.  It was only for about 7 or 8 seconds, but when it was over she woke up and went to get out of bed.  That’s when she fell to the floor and crawled over to me because her left leg wasn’t working correctly.

Fast forward 6 months.  We’ve had an MRI and 24 hour EEG.  There was nothing abnormal on either.  Because the seizures were still happening every 3 weeks or so, we added another medication.

Fast forward to two weeks ago.  The neurologist decided that because she was still having seizures, we should increase the medication again.  Immediately after the medication change, Rosalie started having seizures on an almost daily basis.  These uncoordinated, left sided weakness, off balance, let me interfere with your learning abilities and totally freak you out kind of seizures.  Almost every day.

Then a new presentation:  pupil dilation and shaking hands.  Definitely a seizure.  And on her 8th birthday!

Let me say that again in case you missed it:  after increasing her anti-seizure medications, her seizures increased.

Now I’m not a doctor, but something just isn’t quite right about that.  Shouldn’t it have been the other way around?

A 24 hour EEG was performed again and doesn’t it figure that I saw no seizures at all on that day.  Monday, yes.  Tuesday, yes.  Wednesday, yes.  Thursday (when they performed the EEG)?  Nope – not a single one.

I went to the doctor to discuss the EEG results.  I was armed with a boat-load of questions:

 

pupil dilation/confusion on 8th birthday

 

What did the EEG say about her increase in seizures?  Did it even capture any seizures?  Is the medication causing the seizures? Are these uncoordinated, off balance, altered consciousness events even seizures, or are they a result of the meds? Is it possible she has a seizure syndrome (her seizures are getting worse, and new types of seizures are emerging)? Are there genetic or blood tests that can be run?  A sleep study?  An epilepsy clinic? Is there a possibility that these will get worse?  Will she grow out of them? What the heck is going on with my little girl?  Are the seizures causing the regression in some of her skills (potty training and word re-call)?

I like our neurologist.  He’s friendly, he’s laid back, he seems genuinely concerned.  Unfortunately he simply had no answers.  None.

His solution to her increase in seizures was to increase the same medications again.  If that doesn’t work, he said he would put her on yet another drug.

I can not even begin to express my thoughts on this.  [insert deep sigh] I left with an overwhelming weight on my shoulders – anxiety, frustration, tears, headache, heartache.  I immediately called only board certified child neurologist in our county and asked for a second opinion.

And do you want to know a secret?  I felt incredibly guilty calling for that second opinion.  Yes, you heard me right!  I don’t want to hurt my doctor’s feelings by telling him that I don’t think his treatment plan is good enough, and I don’t want to sound like I know more than him!  I know it sounds crazy.  I want the best for my daughter. I, an uneducated mom, am choosing NOT to smile and say ‘thank you very much, please continue to increase my child’s mind altering chemical medications’.   I’m making the choice to ignore those guilty feelings and get that second opinion – it may be life changing for my daughter!

My daughter is only 8, she has Autism, and now her Epilepsy is running amuck.  I’m not going to settle for slapping a band-aid on her issues.  That just feels wrong.  Kind of like stitching shut a wound before it’s been cleaned out. Yuck.

I am reminding myself over and over:  God blessed me with this child.  It’s in her best interest to get a second opinion.

I’m trying to being a good momma.  Man, is it hard some days!

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3 thoughts on “Mom takes charge of seizure care

  1. If the first doctor is a good doctor, he knows his limits. He will not be offended, upset, or angry that you chose to go to a pediatric neurologist to see if that physician knows more than he does. You have the right to tell the first one that you are seeking a second opinion so that it doesn’t feel like a secret. If the doctor “can’t handle” that you are getting a second opinion, perhaps you shouldn’t be going to him anyway. If he is as good as you think, he won’t have any problem with it.

  2. You are doing the right thing. My son who is 6 has had sz since the age of 2, June 20th 2006 to be exact. We started with trilegratal, went to trileptal, and then to depakote. December 27 2007 was his second to last sz in July of 2009 we went to our doctor who wanted to increase his meds for truly no reason. I am very educated when it comes to sz and I had a load of questions and did not feel right giving my son more meds, I did not see the need.

    The dr got upset with me for asking why, and having the ability to talk to him on his level. Long story short I grabbed my son and we left. We made an appt at CHOP in PA. The appt was 4 weeks away, I was scared that I did not increase my son’s meds, I never did not do what the dr told me.

    Went to CHOP voiced my thoughts got a great dr and I could not be happier. Sometimes our heart is telling us something and WE have to listen to it. It might seem like the wrong thing to do but in out hearts we know what’s right.

    Follow your heart and all will be well. SZ are hard to deal with as parents, the feeling of helplessness is the hardest thing to do in life.

    Luck
    roncap.wordpress.com

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