seriously though i keep losing track of time. this week has been crazy. I am also sick soooo.... luckily anni is not (yet) I hope she doesnt get sick, because usually she will have a lot more seizures...
last we talked i was mentioning how much it bothers me to p[ut her on the dilantin. well 2 weeks ago tomm. we stazrted dilantin at 25mg twice daily she had a seizure every single day and 2 on weds/sat then last tues she stopped, we contacted the dr. on monday but no return call un til weds, then we had to have blood drawn, and the dr said her dilantin levels were really low so we increased to 50 mg twice daily. we started that on friday. she had 1 seizure yesterday ( shouldnt her meds stop the seizures)
so you may be wondering why i am allowing the dilantin increase when i was soooo opposed last week.
well we went to get a second opinion. at swedish medical center, instead of children's. the dr who seems very nice (but not very personable, not really engaging) very very smart i think. anyways she wants to do another test before we change anything, we need to do what is called a video eeg. basically my child will be admitted to the hospital and hooked up to an eeg machine, then they will put a camera in the room and when she has a seizure there will be the eeg as well as video of what her seizures look like, how she reacts, and how she recovers. then dr #2 will make a diagnosis. soooo no real second opinion until testing is done. and the earliest we can get in is 4/13./ the dr said it could take between 1 and 5 days, and since kjell is going back on the boat i have to take a week off of work for it, because i have to be there 24hrs a day to help monitor her. gran will help releive me etc. but who can really leave their child in the hopsital without them.
anyways.
later
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When I read posts like this I realize how lucky we are to have the neuro we do. My daughter had an EEG before any meds were started. We were started on Keppra in Nov. the following Jan a vidoe EEG was done before any other meds were started, I think we were there 4 days. They did an MRI at that time too. The stay at the hosp.is not as bad as you may think it will be. But let me say this, you won't be able to pull anything over your childs head, so pack clothes or pajamas that either button up the front or like the zippered footed sleepers. My daughter has a ton of hair so I always take conditioner to soak in her hair after the EEG leads are taken out. That glue is a mess! Check with the Video monitoring unit and see what your room has. Ours had DVD player, and we took videos. It also had a mini fridge so my husband took some soda. Usually the hospital has some sort of snack room too.
ReplyDeleteOur hospital told me to bring anything that would make my child comfortable. They said one mom had brought her child to Ohio from California and UPS'd boxes and boxes of the child's toys. They said it took her a full day to pack everything up.
I was afraid my very active daughter would never stay still in the hospital bed, but as our neuro said you'd be amazed at how well the children adapt to it.
My daughter does get nervous at the hospital (I don't know how else to phrase it, she is nonverbal) and while we stay at the hospital she will not poop! So keep an eye on that and don't be afraid to ask for a suppository if needed. Last time we came home from the hospital I could not believe the amount of poop that came out of her!