Holding Pattern

Warning: This is a boring Vista medical/health update and also a bit of a novel. If you’re not interested, you should go check out @Psychmamma’s pretty snow pictures instead icon smile Holding Pattern

Sooooo… yeah.  Way back in November I wrote about how Vista hadn’t been doing well.  I originally suspected her sudden weight loss, rash, lack of appetite, etc were due to the new anti-seizure meds she started at the end of October.  Of course, being just a mom, I was pooh-poohed, and told it was just viral.  I wasn’t convinced.

I really wouldn’t have fussed it too much, had it not been for the 10lb weight loss (which left her looking frail), and the fact she stopped having bowel movements altogether.

I finally took her into our family doc, who is awesome.  We decided to rule out EVERYTHING it could be, until the only option was the meds.  He ordered abdominal xrays checking for a blockage or obstruction, as well as a blood panel checking for diabetes, cancer, thyroid, you name it.  These all came back normal.  All of them.

It was time to call her neurology team and tell them she was still not well.  Every other possible explanation had been ruled out, and, as it was right before Christmas, I wasn’t buying a virus that had lasted two months, especially when all her blood counts had come back normal.

They agreed, and we decided to keep her on her meds over Christmas and bring her in early January to discuss options. Then the nurse mentioned that perhaps we could try splitting her med dose.  She didn’t think it would make a difference, but it would be something else to try until we went in to see them.

So, rather than the full dose in the evening, she now gets half in the morning and half at night.  And guess what?  Rash? Gone.  Bowel movements?  Returned.  Weight loss?  Stopped.  *poof*  All her symptoms magically disappeared.

We’re still not sure why she was reacting so badly to the full dose (she is still solid in her status as the ‘little anomaly’) but we’re just happy to have it figured out.  For now, we’ll leave things like this as they seem to be working.

Our project now is to get her to put some of her weight back on.   At 38lbs and almost 3’6″, she’s too slim for her big frame.

The other thing we had going on during this, is the first part of her pre-surgical testing (in preparation for the possible eventuality of brain surgery for her epilepsy).  This was a neuropsych evaluation that tested her IQ, cognitive abilities, and other brain functions.  We got the results right before Christmas, and the results were… interesting.

She has problems with impulse control (so telling her not to do something can actually make her do it.  Doh!) and executive brain functions (these are to do with planning, abstract thinking, troubleshooting, stuff like that).  These are consistent with her abnormal EEG and the spiking they saw in the back of her brain.

So, what does this mean?  Essentially, that V could be a danger to herself.  She can’t stop herself from touching a hot stove if her brain decides to do it.  It means, as we already knew, she requires constant supervision.  It also means that we’ll need to change some of the ways we parent her, because they’re not working and they’re not ever going to work.

The neuropsych team has written a recommendation that V have a behavioral aide with her, so I will be putting all the papers together tonight to get the application in place for that.  That will take some of the stress off us, I think.

They also recommended further testing.  When she’s older they would like her to have a MRI neuropsych eval, that would fully map her brain functions.   The next step, as far as the surgery goes, though, is a 5 day hospital stay, with her hooked up to an EEG machine and video monitored, while we pull her off her meds and hope she seizures.  Yay.  There’s no date set for this test, yet, and I’m, quite frankly, in no hurry to do it.

For now we’re in a holding pattern.  As long as her meds keep working for her, and we have no more adverse reactions, we’ll keep things as they are.  And keep our fingers crossed.

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11 Responses to Holding Pattern

  • punkinmama says:

    Keeping my fingers crossed with you!

  • i’m really glad you’re writing about this. i’ve been so grateful for our conversations about all of this, but i’m happy to see you writing about it because it’s a process for all of you.

    love to you.

  • PsychMamma says:

    Oy. I told you this before, but I find it SO frustrating when the medical community so easily writes off our intuition and knowledge of our kiddos. The attitude that I repeatedly pick up from medical professionals is often a barely concealed eye roll and barely stifled sigh, as if to say, “Oh great. Another one of THOSE mothers.” It makes me crazy. And I LOVE proving them wrong. However, I hate that proving them wrong often means our kids have to wait for what WE really suspected to begin with. Ugh, ugh, UGH.

    I get that there are parents who ARE a little kooky or don’t know what they’re talking about, but I really wish the first default response from med professionals would be to LISTEN rather than eye roll and tune out. Give us the benefit of the doubt FIRST.

    I’m SO glad that splitting the med dose did the trick for V. It does seem mind boggling that it wasn’t suggested at the start, and it has to be frustrating to you that you put her through all those tests for naught (although there’s always some comfort in having those results). *sigh* I hope that she picks the weight back up soon and that the split dose continues to work well for her.

    Keep me posted on when that 5 day hospital stay happens. I’ll be keeping you in my thoughts and sending love.

    P.S. Thanks for the shout-out for my snowy day pics! xox

  • Lisa says:

    Ugh, I can’t imagine how tough being in your shoes must be sometimes. I’m so glad that splitting the meds got things back to normal for V.

  • Dre says:

    I’m so glad that splitting her dose did the trick! What a simple solution to such a horrible, frustrating problem. Too bad the doctors didn’t listen to you about the meds and suggest it in the first place!

    I don’t envy the road ahead for the three of you, but having some answers and knowing you will have help must be something of a relief.

    That sweet girl of yours is quite the moving target!

    Love to all of you. xoxo

  • Ironic Mom says:

    Ode to nurses, the world over, who listen to mothers. I wish you all strength and laughter for the months ahead. Heck, even for today. You are a strong woman.

  • Mandi Bone says:

    I am glad that the med change worked.

  • laura says:

    Oh Jen, I am so glad that V as a wonderful intuitive mother like you. I wish that Drs would listen to that mothers intuition, I can’t tell you how many times I’ve been able to tell a Drs “I told you so”. It sucks that it’s that way. I am glad that halving the meds took care of the major problems. Im thinking of you all!

  • *Hugs* friend, to you and Bil and of course Miss V. I am so glad that they finally listened to your concerns and it makes steam come out of my ears that they didn’t listen before! I learnt that when M was 11 months old and I got the “viral” story for over a month, when she actually had pnemonia which was undetected. Not on the same par as your issues of course, but just an example of how there is NO-ONE who knows their own child like their Mom (or parent). I just wish the medical doctors had that memo.

    You are so amazingly positive and courageous and strong as you face all these unknowns with such grace and love. I think having help is a must – you deserve to take care of yourselves too and it will help all of you in the end.

    Hugs and sending good thoughts that the side effects are gone for good and that V starts to fill out again and feel better.

    Love to you mama – you are awesome, as is your daughter. : )

  • Chibi Jeebs says:

    Oh, Jenn. Oof. I’m so glad splitting her dose has helped (YAY!), but the rest must be so overwhelming – it’s just so much to take in at once, I would imagine. :( So glad V has you for her mama. <3

  • Kellee says:

    I’m so glad you were able to find some relief with a change in meds.I cant imagine how difficult this must be, but your handling all of it beautifully. <3

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