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…

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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

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10 Responses to Steady As She Goes

  • punkinmama says:

    She is such a sweetheart. I hate that she has to go through all this!

  • i’mnotcrying… i’mnotcrying… i’mnotcrying… but dammit i wish i were closer. nothing but love and support to you all.

  • Heather says:

    I think the 2 together are going to show you a huge improvement. Especially since they can monitor it easier AND she is growing like a weed!

    She’s preciously adorable…and I want to eat her cheeks.

    xoxoox

  • Deidra23 says:

    Hope these ones work well!

  • Tricia says:

    Oh Jenn, my heart goes out to you all and I hope that sweet V will respond well to the third med. I am so sorry that you have to go through something so difficult and stressful. That said, she is obviously thriving despite all the challenges and is a beautiful, much loved girl, who has an amazing mother. This, no doubt, will lead to a very strong and resilient young woman when she gets older. Keep it up mama – you are awesome!
    Tricia : )

  • Lisa says:

    I hope adding this latest drug does the trick. Sending tons of love and supporting you from afar.

    And, Vista looks absolutely adorable in the picture.

  • Kellee says:

    I hate that she (and you) are having to deal with this. I hope they find the right combination for her, and soon! <3

  • Lu says:

    Well I will keep having hope in the medication. That the combination will be correct and hold her off. You know, until she outgrows this too. Sh is a true princess miracle. Love you guys.

  • Aunt Becky says:

    The brain is a strange and wonderful machine. Hopefully, this will do the trick. xoxo

  • Leah says:

    I came across your blog by accident, had a few (okay a lot) of good chuckles and then stumbled onto the info about your DD seizures. My 7 yr old has been having seizures for about a year and have had lousy side effects on Zarontin and Valproic Acid. They kept seizures away but with vomitting, rages, mood swings, exhaustion etc..

    Not sure if you have heard of the Ketogenic Diet but we are starting it in 3 weeks. 30% of kids will go seizure free/med free. 30% go reduced meds/reduced seizures and 30% see no change..

    Might be worth looking at for your daughter..

    Kindest Regards from a “bizy” mom,
    Leah
    Calgary,AB
    Canada

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