Friday, January 8, 2016

Autism can be complicated.

A much needed update on my sweet Dexter. 
Something I have learned over the past 2.5 years of Dexter's life is to always go with my gut.  I have always thought there was something going on with Dexter, and it was more than just a virus.  And in between all the blood work, doctor visits, specialists, and sleepless nights I knew there was something else going on with my sweet little boy. 

In November I sought out a second opinion about what I have continued to notice with Dexter.  I am so grateful for Dr. Heather Harrison and her listening ear.  Because of her in December we were able to have an EEG and MRI of his brain done.  It was noticed in the EEG that he was having seizures. 
We then were sent to a Neurologist.  We finally got into the Neurologist yesterday.  Dexter has Autism induced Epilepsy.  This is common with kids with Autism. (33% of kids with autism have epilepsy) The doctor (Dr. Nelson in Provo) was very knowledgeable with children with autism and he was great at answering our questions.  Dexter is going to be starting a daily medication that he will take most likely forever.  The medication will need to be adjusted, like all medications, as he grows.  There are side effects, but hopefully we will see minimal.  He goes back for follow-ups monthly.  Then twice a year visits once the medications are stable. 

Dexter is autistic, and epilepsy is a side effect.  Most likely his sleep issues are from autism and also the seizures.  We are hopefully that once the seizures are under control his sleep will improve.  There are a lot doctors who don't know about autism, but there is a lot doctors know about seizures.  So we are grateful for that.  Over stimulation is a primary cause of seizures for children on the spectrum.  We need to start being more aware of what overstimulates Dexter and what makes his brain seize and body shake. 

Here is a good article explaining the links and what Dexter has been dealing with since birth:
https://www.autismspeaks.org/family-services/epilepsy

Dexter is a very strong little boy to have been dealing with this since birth.  He has been dealing with night terrors, fevers, failure to thrive, growth issues, headaches, daily seizures, little sleep, and psychotic episodes (uncontrollable screaming, shaking, not knowing where he is, hallucinations, etc).  But if you know Dexter you will notice he is a very happy kid.  This is a huge blessing.  I am so glad he hasn't lost his sense of happiness through all of these trials.  

Thank you for all your support.  We know our family is complicated but Will and I honestly wouldn't have it any other way, we don't know any other way.