Thursday, October 14, 2010

Infantile spasms awareness week

As I set here feeding my 16 month old daughter through her g-tube, I am aware.

This is infantile spasms awareness week. It is sponsored by the company ,Questor, who manufactures the steroid injection ACTH (acthar gel). The same company who makes almost $30,000 per vial (we used 3!) eye roll
This is what she looked like on the ACTH.

No other company or organization is doing anything to bring awareness. I had planned on this week doing several blogs, posting videos and stats but Emily ended up back in the hospital again on Monday night. So I have not had the time to do it all.

It was the quickest stay yet. She was admitted around 11pm and we were home by 3pm Tuesday.

She had been doing really well, Saturday and Sunday she had no seizures and then Monday morning it all changed. Her spasms are usually an indicator of how her seizures will be. Less and more mild spasms usually equals little to no seizures and when she has frequent, harder spasms her seizures are crazy.
She woke up to a lot more spasms and the clusters were lasting pretty long too.

Just as predicted she started seizing just a couple hours after waking up and they "seemed" to be under control. Never trust a seizure! :)
Joe got sent home early from work so we laid down and were napping when Emily's nurse hollered for us. We ran out to the living room and she said she had a new scary seizure.
She described it and right on cue Emily did it again. It was a tonic-clonic (grand mal) but she was screaming with it. They were not long but she quickly began clustering them. I gave diastat and called neuro gave some more meds.....they were not stopping. It was only sedating her and my biggest fear is aspiration. Once she could not clear her throat I get nervous.
There was really no changes made this time, they just monitored her and gave some IV ativan.
Today she has only had 1 seizure.

Were are working on getting an oxygen monitor for home so that we can avoid hospitalizations like this one. If we can monitor her oxygen at home when she is that sedated hopefully we can stay out of the hospital during cold and flu season.

I am aware, aware that infantile spasms is scary, destructive, and life altering.
Before the diagnosis
 After the diagnosis

We have had to make choices no parent should.  We have sacrificed a lot and will sacrifice more. We have gone days without sleep, food or showers. We lost half of our income when I quit work to take care of Emily. I have lost relationships with people who in most families are their greatest support system. People just don't knock down your door to visit, we don't have must else to talk about these days other than Emily and everything that revolves around taking care of her.

Dec. 3 2009 was probably the worst day. When I heard the diagnosis of IS I felt relieved. A name like that CAN'T be that bad, right? Then I saw the sadness in the neurologist eyes, he knew how hard this road was going to be. I am so thankful we have such a great neurology team. Our neurologist is kind and helps with whatever we need. I am pretty sure Emily is his favorite patient (wink wink) :) The whole office is always very helpful and most of them know us well. When we are in the hospital the nurses know us well and take great care of us.  We have a great relationship with the neurology nurse practitioner and Emily's dietitian also. While I wished with every ounce of my being that we did not have to have those people in our lives, I am thankful that we do have those people who take such great care of her.

I pray one day we can find a cure for IS and epilepsy in general. I have many friends I have met through blogs, forums and facebook and watching so many kids suffer daily from seizures and spasms is devastating. Since last Dec, I have seen 5 kids pass away from epilepsy, we NEED a cure!


  1. WE ARE AWARE!! I wish we wasn't. I still believe with all of my heart that God is and will take care of Emily. I KNOW that there will be a day coming in which she will have her last seizure. Jeff and I are ALWAYS here whenever you need us. We love our children.
    God Bless you all!
    Grandma Mary and Grandpa Jeff

  2. So many people praying for that cure for Emily & all those precious angels fighting their battles!!!!

    That before/after picture just knocked the air out of me... but she's a little fighter, isnt she? She keeps trying! And we'll keep cheering Emily on!!!

  3. This post hit home to me. We have very similar pictures of Jack holding up his head and then just laying there. I am very aware of IS, I wish I wasn't.

  4. I am so aware, in many ways that I wish I wasn't. I hope that someday they can find a CURE for epilepsy. It is devastating to too many of our little ones.

    I am glad that Emily's hospital stay was quick. We are working on getting an oxygen monitor for the same reason.

  5. We're aware. We're doing something about it.

    Stop on by. See if you want to help- in any way you want/can.