Living Whirlwind – Gab Update

Our lives have been a solid whirlwind lately.  The past few months have been pretty hectic to say the least.  Half the time I think Gabby and I neither one know if we are coming or going.  Today she had a dentist appointment that went fairly well, in the fact that she allowed him to clean her teeth with no fight.  The end result being she has surgery on May 24th isn’t such great news but we’ve had worse.  She has three baby teeth that need to be pulled.  I had a feeling one was going to come out because she has been complaining about it and it bleeds every so often.  I think it’s trying to come out and make room for the permanent tooth but she has a cap on it and therefore it’s struggling to let loose.  Not sure what’s up with the other two.

She also needs a very tiny filling which isn’t too bad.  With the dentist pulling three teeth they felt the only way to do this was under full sedation so they consider that to be surgery.  We complete pre-op on the 23rd of this month and she has to have a full physical between May 10th and May 17th.  So a total of three appointments this month to remove three little teeth.  Anyone have a pair of pliers?

Her stitches are completely out now and her foot has healed.  That’s a positive.  Next up, a visit to her Orthopedic Surgeon to see what’s the next step to help aid in her walking.  Maybe Botox injections again or another surgery.  Not sure…  She is just struggling and dragging her foot again pretty severe so something has to be done to help.  I hate it for her.

Since the last update about medication changes when she was having a few seizures back in January we have completely stopped that medicine and started something new.  That’s a total of three Epilepsy medications in three months.  We stopped the Tegretol completely because when she was on the correct dosage to stop the seizures her mood was out of control.  The medicine either just didn’t work in her system or the other medications she is on were counteracting with it.

We started Trileptal the last week in March and slowly increased the dosage once a week until she reached the full dosage four weeks later.  The seizures have been controlled since and there has been no confusion.  I wish I could say her mood is excellent but unfortunately it’s not.  Her hyperactivity level has been through the roof.  She does great for about three hours a day.  Then the rest of the time it’s like a light switch has been flipped on and she can’t sit still.  It’s not only hyperactivity either… she does things that she normally wouldn’t do.  One thing for instance is put lotion in her hair last night for the fun of it.  No clue why but she apparently thought it was a good idea.  Full lotion, dry hair, big mess.  Or tonight… she dumped gold fish snacks on the sidewalk outside and stomped them, full bag, for fun.  We weren’t playing outside, she literally took the bag out of the kitchen, walked outside and ta-da!  After putting a DVD in the player to watch, before the previews are done she already has out another DVD to change it or has moved on to picking out a book to read.

We are addressing these issues with doctors now.  I’m hoping this time around we can adjust some of her other medication and leave the seizure medicine alone.  I don’t want the seizures to come back and I’m tired of testing with those.  I hate to admit my child needs medicine.  I feel sorry for her and I’m constantly eaten up with guilt.  However I have to remind myself that she must be miserable living this way also.  No one could enjoy bouncing off walls or not being able to sit down for 15 minutes.  No one could possibly enjoy mood swings as rapid as hers are and no one should have to live this way.  I am determined to not allow her to be ‘doped up’ with medications yet find an even balance of the right ones.

Until then… we take it day by day.