We have been having a ton of scary moments lately - and last night was the worst - Andy took Brayden to church I stayed home - fed Brextin, bathed him and placed him down to sleep around 8:00 - I actually went and laid down myself - I have been exhausted lately - as I was laying down - I heard a scream - and I mean a scream - then it registered it was Brextin - earlier in the night we had began to try the generic form of Topamax (since we think maybe the pill form of topamax might be upsetting his stomach) I went to pick him up - and he stopped screaming and then about one minute he did it again - I then took him to my room - in hopes he would lay down with me as I watched some TV - however we began to see more seizure activity - activity that wasn't stopping - so we decided it was time for distat - a drug that you inject through the butt -- in hopes it would stop his behavior - he became very limp - and we also noticed a rash around his neck, upper legs, and arms - his eyes were open - and his adams apple kept twitching -
We called the doctors on call at Mayo and she said he is probably sleepy due to the distat and that he will probably sleep for the rest of the night and to follow up with our local ped doctors in the morning - so we placed him in his bed and decided to go to bed - now it was around 10:00 - just as I laid down I heard him cough - sure enough he threw up - we went and cleaned up his sheets and bathed him again and went back to sleep - now it was around 10:30 - and sure enough he threw up again - so we repeated our earlier steps -
He then finally went to sleep - and it is now 6:00 in the morning and he appears to be resting nicely - I am going to try to post some video of his seizures last night so his neuro doctor can take a look at it -
Ohh how I pray that these terrible days will end and give our family some peace with happy days!!