regression

Steady As She Goes

Friends and family who live out of town have been asking for a Vista update.  So if you’re not in the mood for medical drivel skip over here where Kim is asking the craziest place you ever had a quickie.  Oh come on.  You know you want to share…

______________________________________

Even though I haven’t been blogging and tweeting much about it, Vista has continued to seizure despite the meds she’s on.  She did really well on her first med, Clobazam, until a growth spurt rendered it useless.  She was on the highest dose do the decision was made to add a second drug, Trileptal.

After the Neuro prescribed the second med, they also decided they wanted to see her in office and reassess.  They’re very concerned at the amount of regression and behavior changes we’re seeing in her after her seizures.  So, getting her seizures under control has become priority #1 in her medical regime.

At that visit we also got V’s latest diagnosis:  Symptomatic Partial Epilepsy

Not a huge shock, since she’s been seizuirning for 3yrs.  What it means is she’ll have to go 2yrs seizure free on meds before they’ll try to wean her off of them to see if she might have grown out of the seizures at some point.

Unfortunately we haven’t made it two weeks yet.

V hasn’t done really well on the Trileptal.  The higher doses make her really irritable and the lower doses still aren’t controlling the seizures.

So, they’ve now added in a third med called Valproic Acid.  She’s only been on it a few days, so only time will tell how this one works.  We’re keeping our fingers crossed that third time is a charm.

The down side about the Valproic Acid is that she’ll need her levels checked.  This means the blood tests.  But really, if it controls the seizures, it’s worth a few needle sticks.

On the upside, since her last growth spurt she seems to have mostly outgrown her dairy allergy.  Yay!  Pizza and ice cream for everyone!  We still have to watch how much dairy she eats (too much will upset her tummy a bit), but all the severe symptoms are gone.

All and all, she’s doing not too bad.  She’s growing like a weed (my 3yr old is wearing size 6/7 shirts!), loving summer sun, and content knowing she’s an adored princess.

Vatherbday Steady As She Goes

Neuro, meds, therapy *head explodes*

I can definitely say it is never a dull moment around here.

I can also say I should have never written about how good things were going, because I obviously jinxed them.

First of all, thank you all so much for all your input on the preschool situation. I was surprised by how many of you with special needs kids have decided to homeschool them.  We’ve decided, for now, to keep Vista home in the fall.  This week has proven that preschool would not be a good option for her right now.

Her seizures a week ago have really changed everything.

We had our second session with Vista’s occupational and physiotherapists today at the Children’s Hospital, since her seizures.  She hasn’t had another seizure since we upped her meds, which is great.  Unfortunately, todays therapy session showed regression in her balance and motor skills, as well as behaviour issues.  Even more than last week.  Which is very concerning.  Why is she continuing to skill regress with no further seizures?

After half an hour trying to work with her, her therapists stopped the session and asked me to call her neurologist.  As a parent, when that happens, it doesn’t give you warm fuzzy feelings.

I put in a call to her neurologists office right away and then waited.

The call back didn’t take long.  I’ve discovered when the word ‘regression’ is involved, it never does.

Turns out, it’s not just the therapists who are concerned.

Her neruo is ordering a med change.  This means slowly weaning her off her current meds (goodbye sweet valium chocolates…*sniff*.  I shall miss you), and slowly adding in a new med.  I’m still waiting to hear what that new med is going to be.

And we get to make a trip to the neurologists office.  He’s not happy with the way things are going right now and wants to talk to us and evaluate her. So, tomorrow we’ll find out when that appointment will be.

While I’m happy that things are being done and they’re taking this seriously, the whole thing has throwing Bil and I into a bit of a tizzy.

We were comfortable in the knowledge that the clobazam was working for her and had stopped her seizures and regression.  Now that it’s not, it’s left us on tenuous ground as far as what the future holds for her.  I know we can only take it one day at a time, but when it’s your child who is dealing with all this, that’s a crappy solution.

===============

And since I’m sick of being all ‘woe is us’, why don’t you head over to the BlogHer@Home site.

We’re giving away, hot off the press, Aidan Donnelley Rowley’s brand new novel Life After Yes!!

You’re definitely going to want it on your summer reading list, so you may as well win a copy, right?

The contest is open to everyone (American, Canadian, Martian, BlogHer attendees, those partying with us at BlogHer@Home, those who have never heard of BlogHer).  All you have to do is leave a comment on this post.  So go…shoo… why are you still here??

Find Me

TwitterRSS
FacebookEmail

I’m Connected