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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.

Preschool, School, Homeschool… *headdesk*

150x106 Preschool, School, Homeschool... *headdesk*
Image by Getty Images via @daylife

I’m pretty sure Vista’s therapists think I’m a complete flake.

We’re having to make the dreaded preschool decision for this fall.

And when you have a special needs kid, it’s not as easy as just picking one and going.

First there’s finding a place that will take ‘early entry’ (take them when they’re three instead of four).

Then we have to find a place that takes kids who aren’t potty trained yet. And that little criteria pretty much eliminates every preschool in our area unless Vista has an aide. Which at this point isn’t a given.

So at this point we’ve put her name in at both school boards (public and catholic) in the off chance she does get an aide.

But now I’m sort of backpedaling. I’m not convinced that putting her in preschool this fall is the right thing for her after all. She’s going strictly for the socialization aspect, but are there better arenas for that?

This past week of seizures has really made me reconsider. How are other kids going to react to a child who acts one way for a month then has a few seizures and has a complete personality change? Aide or not, other kids don’t react well to that sort of lashing out.

And Vista’s birthday party on the weekend was another event that made me rethink this whole preschool decision.

There were about 10 kids there (ranging in age from 2 – 10). These were good kids. Well behaved kids. Kids who weren’t wild and screaming and acting like idiots. Kids with LOTS of parental supervision. Ten kids is a VERY small preschool class. Only one school, in a small town south of us offers a class of that size.

And Vista lasted one hour with 10 kids before the meltdowns started. Before the pouting defiance started. Before she was miserable and overwhelmed. To the point where we didn’t open presents at the party because it would have been too much for her.
To the point where she didn’t even eat a piece of the special no-cheese pizza we ordered for her or her birthday cupcake because she was so stressed.

She latched on to her BFF, Gracie, as soon as she arrived and wouldn’t let her out of her sight. But Gracie isn’t going to preschool next year. So who would be Vista’s anchor in the sea of toddler chaos?

As much as Vista needs the socialization and to learn how other kids her age play, how much is she really going to get out of it if she’s completely overwhelmed with the situation?

So maybe we’ll keep her at home for another year and let her be a kid for a bit longer.

And maybe we’ll throw schooling right out the window.

More and more people out here are moving to homeschooling, sick of the bullying that goes on, sick of the substandard education that’s provided as a result of over-worked and under-paid teachers.

And Vista with her follower copy-cat mentality, poor coordination, but bright mind would be a prime target for bullies. I know. I was too. It ruined my early school years. I don’t want my child going through that.

What a choice. Schooling, socialization, bullying, questionable education vs homeschooling, butting heads, and losing my sanity.

Which would you choose?

 Preschool, School, Homeschool... *headdesk*

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