EEG results

Adi, Adi, Adi

So we finally had our appointment to find out results on the 19 hour EEG.  It seems her little brain is spiking.  According to the study 1400 times that day and especially when she is just entering REM sleep.  Now you may think just put her on the dang seizure med and forget about it but unfortunately it is always more complicated than that.  Scott and I have been struggling to get this little girl to gain weight her whole life.  This medication along with the growth hormone have her little body burning hundreds of calories in just their consumption.  The med also changes her personality. Then there is having to push more enteral feeds which causes her to sleep less, especially during the night.  With her stomach surgeries we are also fighting possibilities of bowel obstruction. I’ve asked myself-- What’s more important the malnutrition issue or the spikes that could eventually lead to grand mal seizures?  After researching seizures and seizure meds I had tons of questions like, if seizures can be caused from stress on the body or malnutrition why isn't anyone willing to dig deeper to find out why she isn't sleeping?  Why is blood work showing that on a 1200 calorie diet my daughter is still malnourished? I also found recommendations online to put kids on a casein/ gluten free diet, so of course I asked the doc and he said sure try it but it won’t reverse anything.  Then I asked about studies I’d found on seizure meds causing problems with calcium absorption, he just grinned and said that’s only after 25 years of use.  I then tried making him aware of  Adi’s failure to thrive and re-emphasized my concern with calcium because of her scoliosis and it was like I was talking to a wall.  I left frustrated, hoping to someday meet a doctor who cares enough to take all of Adi into consideration.    


FYI- We are in the process of getting into the Children's Hospital in Birmingham.  Cross your fingers we find a great sleep specialist and get some real answers.

On to happier subjects.  I have decided to cut back on therapy Thursdays.  Monday was doctor apt day, Tues/Thurs therapy at pearl nelson, and Wed/Fri Miss Wanda from the school district.  Thursdays we also have a speech therapist come to our home from the school district which I have decided to keep.  I will be making up the missed PT with lots of fun.

We bought Adi her own little bike, which she loves, and have a playground right behind the house which they love going to.  There are also our walks to the seawall where they get to walk and see all the animals (dogs, birds, fish, etc).  I have also ventured to babysit two really fun little friends (at different times of course) which has been a blessing for both us and their moms.  I figure by having one friend over they get the benefits of interacting with others as well as limited exposure to germs.  I hate having to worry about germs but unfortunately it is still a big issue.  

Ayzie- She continues to test her limits on just about everything.  We went to the beach Saturday and the kid just dove right in with no regard to the cold water or having an adult with her (don't worry Superman Dad got to her before anything could happen).  She loves watching and running after the squirrels.  Luckily we have quite a few just outside the back door every morning.