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.

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15 Responses to Neuro, meds, therapy *head explodes*

  • Lu says:

    Oh Jenn. I hate this for you. SO MUCH. I truly hope the neuro gets her back on track. I am SO glad they are taking it seriously and things are moving more quickly than they have before.
    As for you and Bil? tons of love and hugs to you both. I wish I could do more…so much more.
    .-= Lu´s last blog ..Waiting =-.

    Jenn Reply:

    @Lu,

    Thanks Lu. I’m really hoping switching meds will do us for a bit longer. I’m realistic enough (now anyways. lol) to realize that even the new meds might be a long term solution, but we’ll take it.

  • shriek house says:

    I’ve just found you via Twitter, so I don’t know your whole story (though I do plan to read through your archives) but as a mom with a kid newly seeing a neurologist you have my sympathy and my admiration. I hope the new med is just the ticket. Hang in there…
    .-= shriek house´s last blog ..different images =-.

    Jenn Reply:

    @shriek house,

    Hi! It’s nice to meet you!
    Can I be nosy and ask what you guys are seeing a neuro for?

  • Lisa says:

    Oh, Jenn, this makes my heart hurt for you guys. I’ll be thinking about you. Hopefully the appointment with the neuro will yield some results and the new meds will help get Vista back on track.

    Hugs to you, Bil and Vista.
    .-= Lisa´s last blog ..Our Kickoff to Summer =-.

    Jenn Reply:

    @Lisa,

    I’m interested to see what will come out of the neuro appointment. Part of me doesn’t really see the point of it. I mean it’s not like there’s anymore tests they can run. They’ve done several EEG’s, a CT scan, and an MRI. If they don’t know what her brain looks like by now, then we have a problem. lol

  • Michelle P. says:

    Hugs

  • Al_Pal says:

    Ahhh, geebs! so sorry you’re dealing with this! ;/

    I hope they figure it out soon, and you have PROgression!

    *HUGS*
    .-= Al_Pal´s last blog ..Sensitivity: I have it. =-.

  • Ironic Mom says:

    I haven’t had the healthiest spring, but stories like yours remind me how “easy” it is when it’s not our kids who are unwell. Sending you all health and strength!
    .-= Ironic Mom´s last blog ..Decorating Kids’ Rooms: Why Bother? =-.

  • Melissa Palmer says:

    Cringe. Shudder. Sigh.

    Thinking of you! How much of that Valium do you have left?

  • Laura says:

    Jenn, I can’t say I totally understand, but my friend please know we are all here for support and love. I hoep that the neuro apt goes well, and that the new meds they start her on help her alot better. I am also glad that they finally are taking notice and acting a lot quicker.
    Much love and hugs to you and Bill, and Miss V!

  • Becky says:

    i’m so glad that at least now it’s all being taken seriously. i remember your frustrations just last year about how it seemed like you were waiting forever to be seen and no one would listen. i can’t believe it’s all still going on and i’m just hoping there’s an end in sight soon for all of you. xo
    .-= Becky´s last blog ..Shredding =-.

  • it’s DEF never quiet around your house, that’s for sure.
    Let’s just pack up our kids, and spend a lazy day at the beach. In Mexico. Raul can rub our shoulders and Pablo can entertain the girls while we sip tropical drinks (umbrellas and all).

    Love you mama.

    xoxo

  • Denise says:

    Jenn, I hope things are worked through quickly. I am sorry for the unknown, thinking of you and V!
    .-= Denise´s last blog ..Tuesday Tips: Why Bento Lunch? =-.

  • Kellee says:

    Oh hon, that is rough. I’m really glad they are taking this seriously, though – unfortunately, that is not always the case.

    *big hugs* for you and Bil and Vista.

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