Hunter has been recently diagnosed with Otahara Syndrome, very scary for us because when we read up on it we see many similarities.
Here is the hard to swallow Prognosis:
- Prognosis is poor with severe psychomotor retardation and significant learning difficulties.
- The seizures are very often intractable and resistant to antiepileptic therapy making control difficult.
- Frequently cases will progress to West syndrome or partial epilepsy (usually during infancy). Later a much smaller number progress to Lennox-Gastaut syndrome. Psychomotor development may be slightly better if the infants do not develop West or Lennox-Gastaut syndrome
- Half of the children are likely to die in infancy or childhood.
- Some children who survive early children will often see a general improvement beyond initial expectations and increased life expectancy.
For now we are still in Holland and will stay there as long as God will let us.
Nick & Samantha Isaacson
Hunter Nicholas Isaacson 02/04/2010 - 07/06/2011 "Our Angel is now in Heaven"
I cry everytime I read about my Little Chubby Cheeks. He is a blessing to everyone and reading that post was heartbreaking. God is with all of you and I pray that you all will stay in Holland for as long as you can. Travis and I are here for you all if you need anyting. Don't hesitate to call or ask. Give Hunter hugs and kisses for me and we will be visiting again very soon. I can't get enough of Hunter's cuteness and his happy smiles.
ReplyDeleteAlways remember to focus on today and don't lose sight of the joy of the moment because of the fear of the future.
ReplyDeleteHunter is beyond precious and you are so blessed to have him to love and cuddle each day and he is so blessed to have such a loving family who provides the love that he so desperately needs!
You are always in my thoughts and prayers!