on autism and epilepsy

This past February, our lives with Moose took a dramatic turn.  Being autism parents, as many can attest, has its challenges.  But, a new layer of concern, happened one ordinary Monday night.

My husband was reading bedtime stories to the boys as I put laundry away in their room.  He called for me, because Moose started to throw up during the reading.  No big deal, it was flu season, right?  Wrong.

He was unresponsive, gray, and for a few moments, we thought maybe he had shoved a toy in his mouth and started choking.  His jaw was clench shut, his eyes were glazed, and he was choking on his vomit.  After that, I don’t remember much.  I knew it was a seizure.  I remember my husband yelling.  My son unresponsive on the floor.  Fumbling.  Numb. Desperate. It was the scariest night of my life.

Within minutes, I ran barefoot in the snow to my neighbor.  She is a special ed teacher, maybe she knew CPR?  She came, frantic to help.

Paramedics arrived shortly after.  After about 5 minutes, he came back to us.  It’s all a big blur, but as we rode to the hospital in the ambulance. I knew life as we knew it was over.

 

***

As of late, I have been quiet on this blog.  It chronicles much of my history as a special needs parent.  But, just as this blog saved me in the early days of an autism diagnosis, I hope to reconnect with the families out there searching for answers and struggling all the same.  Autism grows each year, and epilepsy is just as mysterious of a condition.

Autism and epilepsy, are often, (30-40% of the time anyway) comorbid conditions.  I hope that sharing our family’s story and Moose’s journey help those in need of comfort, answers, and community.

 

With love and light,

Nicolette

 

You may also like

4 Comments

  1. Hi! It’s so good to see you back on your blog. I’m sorry life is taking another difficult turn. My niece suffers from periodic seizures too. I’ve never witnessed one, but know they are incredibly scary. My heart goes out to you and I will keep you and your family in my thoughts and prayers. Your blog was the first I read a handful of years ago when we entered the world of gluten-free and celiac disease. Keep sharing. Your story and information are powerful.

  2. I am so sorry that your beautiful little boy is suffering. Mine does too. There are no words. I am praying my heart out for you and for him.

    This may be completely unhelpful, but thought I would share just in case. My son had a few absence seizures when puberty began. Obviously no comparison to what you guys just went through, but I was able to tie it to some supplements that we were giving him at the time & it seemed to be several in combination that were related: folate/folinic acid, niacinamide, calcium, anything with glycine. I believe it is something to do with glutamate receptors not converting glycine to GABA. Just a shot in the dark, I know.
    I hope and pray that he never has another seizure! Lots of love from one autism mama to another….

  3. So sorry your sweet Moose and your family had to experience this. Our son had febrile seizures – 11 in the first 18 months of his life – so I know the terror, the shock and the helpless feeling. Of one thing I can be certain – you are stronger than you think and if anyone can make it though with sheer determination and will, it is you. Stay strong, friend!

  4. Nicolette, My heart goes out to you and your family. I’m hoping that you now have some answers to help your baby.
    I have 5 grown children, and 9 grand babies. I have an austic grandson, and yes, challenging is great word to describe
    his adventures. My daughter is an amazing Mom. She is the one that challenged me to go gluten free. It has changed my life.
    My joints don’t ache anymore. And I can think clearly! LOL A very very nice result of a gluten free diet.
    Please know, even though I just found your website, I will hold you and your family in my thoughts and prayers!

Leave a Reply

Your email address will not be published. Required fields are marked *