Saturday, October 8, 2011
Our life living with Epilepsy the uncontrollable kind.
I will warn you this is going to be fairly lengthy,so you may want to grab some coffee or tea and sit for a spell.
This is our story.
Part 1, Daniel's story
Daniel was born 3 weeks premature and had a few breathing issues at birth,mainly because they gave me too much Epidural and I stopped breathing,so he wasn't either,after a day in the nursery with oxygen he seemed much better and was fine.
At the age of 10 right before Daniel's 11th birthday our car had broken down in another town,so my husband Ariel and I went to get it.She was 7 at this time.When we came home there was a note on our door saying your son had a seizure and is at Mary Bridge.Now at this time we knew nothing about seizures at all.Heard about Epilepsy,but didn't know much.Before this Daniel was happy,healthy and full of life.
We got to the hospital and were told he had,had a Grand Mal while watching his brother play a car racing game.We were told it was probably a fluke and he would probably never have another one,well a week later we were staying up for an all night EEG and boom another Grand Mal.Daniel was diagnosed with Epilepsy and put on Depakote.He continued to have seizures every week.At that time mainly light induced.If he even saw a lamp he would instantly go into a Grand mal seizure.Then we went on the medicine and Neurologist merry-go round.
The Depakote made Daniel act psychotic.He would bang his head against walls and turn burners on and put his hand on them.The Neurologist we had at that time was less than helpful as was our Pediatrician who said we could let him safely convulse for 20 minutes before calling for help.
None of these doctors were very compassionate or helpful.We pulled Daniel off the Depakote ourselvelves (not the smartest thing to do) and put him in dark sunglasses,since his seizures at that time were only brought on by light. His seizures seemed to stop,or so we thought.
I started noticing that Daniel would blank out a lot in the front seat when I would talk to him.He would be talking and just stop and stare.After an EEG it was confirmed his seizure types changed.We also learned at the time he developed Hypertension as well.We started living at the doctors office and the hospital.
Soon after the Grand Mals came back.My son started having odd appearances I started noticing blank stares a lot,hand curling,not to mention weight gain from medication.
Daniel started having all sorts of injuries from his seizures.Then he had several VEEG's inpatient and was put on a new set of meds.With every med came more weird and wacky side effects and they never seemed to do much for his seizures.
Unfortunately the seizures continued
Another thing started happening shortly after Daniel's seizures started.We started seeing people disappear from our lives.Friends and family started becoming very distant and would always either come up with an excuse to not be around us, or would flat out tell us they couldn't handle it and we would rarely ever see them.
It was such a heartbreaking time for a young boy that just wanted to cook and fish.He wondered why friends that were so dear to us would suddenly not want to be in our lives anymore?
Daniel even ended up getting a VNS,but unfortunately the seizures still continued.
His seizures got so bad that he actually qualified for a Make A Wish trip.Normally Epilepsy does not qualify,but it is quite different when you have a life threatening form of Intractable Epilepsy.We are so thankful to Make A Wish for the awesome trip.It was nice to be able to see my son get to have some fun childhood moments.
We went to all sorts of hospitals and medical facilities for testing and treatment.I was concerned,because it seemed he was losing ground mentally,not to mention the never ending injuries.
It breaks my heart and makes me so sad to see my son suffer and get injured,always biting his tongue and hurting himself.To date he's had 25 shoulder dislocations always requiring sedation to put it back in. Thankfully we have some wonderful doctors now that are working with us and have said this is not an exceptable way to live. Before that we had doctors who were not compassionate at all one even told me that he saw many worse kids than Daniel, that was very upsetting,especially since he didn't have to live with Daniel and had not seen the numnerous times we had to pick our son up off the floor out of a pool of blood.
We are praying that the new meds he's on will help to control his seizures,so he can get back to doing the things he loves most.
Daniel's life story videohttp://youtu.be/kEC1CJCSx2Y
Part 2 with Ariel's story is coming up next.