Josie Update

My last visit to the pediatrician with Josie was frustrating. Mostly because I hoped that we could get some answers or make some progress. Josie had been very lethargic, not sleepy but would just want to sit and stare or watch tv.  I'd offer to let her play or paint or do playdough, anything but she wasn't able to focus.  So when the pediatrician asked how she was, I let him know that she wasn't very responsive etc, to which he replied "but other than that she's well?".  I wanted to strangle him.  What I wanted to say was "NO she's not effing well!  She shouldn't be like this!"  Instead, I just started bawling.

I choked through the tears to ask my questions for him to pass on to the neurologist since our two month check up with her turned out to be a six month wait.  There was no way I could wait six months without talking to her.  First off, Josie's new drug would be at the maximum dose two months before our appt and I had no plan B.  We needed to know what we would try next if the lamotrigine didn't work.  And I hate to say it but I feel like all the Pediatrician does is weigh Josie and then play messenger for the neurologist.  Anyhow, I left feeling deflated and like the visit was pointless.

About a week later, we received a call around 6:30 pm from the neurologist.  "Hi this is Lynette."  It was like the stress melted. Did I mention that I LOVE this woman? I rehashed my concerns and she took them as valid, asked us to reduce her epilim but warned us that we may see increased seizures but a clearer child.  Which is exactly what happened.  The day after we brought the epilim down, Josie's seizure count jumped from 7 to 23 (and those are just what we saw) but she was talkative and interested in playing and reading books.  The neurologist also let us know that our next step would be either to try a different drug or the ketogenic diet.  She recommended the diet as the probability of drugs being effective decreases significantly if the first three haven't worked.  Plus adding a fourth drug then tweaking and weaning and adding the diet would take lots of time and possibly a big toll on Josie.  The timing of the diet will depend on the hospital nutritionists' schedule but we'll cross that bridge when we get there.

The neurologist called a week later and gave me some more instructions on tweaking her first medication Clobazam.  We're trying to ramp that up every four days to see if it has any effect.  If not, we'll just ramp it back down.  So far, Josie just seems more aggravated with sporadic seizure counts.  She'll have 5 one day and then 20 the next.  Some days she has no issues with you touching her or giving her a bath and other days I am expecting Child Services to come busting through the door.  When she has these sensory issues she can't stand to have her hands or face wiped after eating.  Or if you have her in the tub and want to wash her hair she just keeps screaming "Don't do that to me!  Stop touching me!".  She won't wash herself either and it if it sounds like a painful cycle, it is!  It's not consistent enough to even know when it's going to happen either.  She'll be all excited to get in the tub and happy with the water but once it's time to touch her she freaks.

She's also starting to push her boundaries with us (and I can't blame her).  So far, she's been very good about not walking on the hard floors without asking us to help her.  Most of the time she stands at the edge of the floor on the carpeting and says "Mommy, I waiting for you!".  Lately, she sees how far out she can get before you will notice and reset the boundary.  We've been trying to give her a little more independence since her full drops have almost disappeared, however, we still aren't comfortable with her walking around in the kitchen.

Yesterday we took a walk over to the pharmacy and Josie got to ride her three wheeler while Sophie rode her scooter.  I think it was just what Josie needed.  She was independent, got to wear her helmet just like her big sister and had some great physical activity.  We did a repeat of the walk today and added a trip around the block for good measure.  She seems to be mentally developing at a normal rate from what we can tell.  Singing her ABC's, counting, picking out her letters when she sees them.

I guess what it boils down to is most of the time she seems like a normal almost 3 year old.  What we struggle with is the constant possibility of a drop seizure.  Boy, that was a little sentence compared to the fear and horrible potential it carries.