seizures

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*

Here We Are Again

It’s 11:30am and I just watched Vista crawl up on the couch in the living room and fall asleep.  I waited a few minutes then went over to her, gently picked her up and carried her to her bed and tucked her in.  She barely stirred as I walked with her down the hallway.

And now we wait for the chorus of “Oh man, your three year old naps?!?  You are so lucky!!”

But right now, I’m not feeling really lucky.

Because for us, that nap doesn’t mean she’s tired, that nap means her seizure meds aren’t working.

She had two seizures over the long weekend.  One on Sunday while she was out with her respite worker, Dorothy and her family.  Then, yesterday, we were over at her Dorothy’s house (as over the past year they’ve become very good friends of ours), and just before dinner she came and sat down next to us and had another seizure.

She seems to know when she’s going to have them as she always manages to be sitting down when she has one.  On Saturday, she crawled onto Dorothy’s lap, told her that her head hurt, then had her seizure.  I don’t know what her warning is… I suppose I won’t know until she’s older and understands enough that we can ask her to describe it.  But it does help calm the fear that one day she’ll have one while walking down a flight of stairs or something.

So here we are at today.  She slept for 14 hours last night after her seizure.  Which is how we confirm if it was a significant seizure or not.  Minor seizures don’t affect her.  But when she sleeps from 7pm to 9am (her normal sleep time is 9pm – 5am)…yeah, it tells me we have a problem.

And now she’s sleeping again after only being up for two hours.  Which means I probably missed a seizure while she was outside playing.  That’s three in three days.  And that?  Is not a good thing.

So here we are again.  Waiting for a call back from her neurologist and probably playing the medication game.

Part of me wants to sob in frustration.

Part of me is worried about the effects these seizures might have on her speech and motor skills again.

Part of me wants that magic cure, dammit. Something we can do so she’s not having to go through this anymore.

But mostly right now, I just want her neurologist to call back so I can find out what then next steps are to getting her well again.

I Hate It When I’m Wrong

I can admit when I’m wrong. Only because it happens so rarely. I mean, everyone knows I’m like the next Mary Poppins – practically perfect in every way. (Stop snickering or I’ll beat you with my umbrella)

Well, yesterday I was wrong, not once, but twice. I KNOW! Mark the day on your calendar because it will never happen again.

I publicly stated that I was sure that the EEG we had slated for Vista yesterday would come back as normal. Same as the other two had. I mean, for one of those, they had her hooked up for 24 hours and it was perfectly normal. Why would I have any reason to believe they’d see anything different on a half hour EEG? Especially since we weren’t able to get her to sleep during it, like they needed. All that sleep deprivation for nothing.  Can we say cranky? (Me, not her).

But… wait for it….I was wrong. What little bit of the EEG they were able to do came back abnormal, showing spikes of electrical activity coming from the back of her brain.

I’m pretty sure my jaw made a nice clunking sound as it hit the floor when her neurologist told me.

To say I was not expecting that is an understatement.

Which led to being wrong a second time in one day.

I was positive that we’d get the nice shrug from the neurologist accompanied by the words ‘Welllll… we don’t know.  Call us if her seizures get any worse”, as they sent us home again.

I got the first part right.  Does that count?

They used words like ‘odd’ and ‘unique’ to describe V’s seizures.  Yeah, my kid’s all sorts of special.  But I already knew that.

What they think is happening is Vista will have a seizure, which causes loss of speech, motor skills, and behavioral issues.  Then two to four weeks later she’s having another seizure that resets whatever the first seizure did and returns her to back to where she was before the first seizure. Did you follow that?  Let me put it in simple terms.  It’s like flipping a light switch on and off. And on. And off. And on.  And off…and…yeah, well, you get the point.

The problem is, we’re lucky if we see maybe a third of the seizures we think she’s having (which is why it’s taken so long to puzzle this out), because they happen at night, while she’s sleeping.  Which could be why she wakes up in the middle of the night screaming sometimes.  Ever wondered what a banshee sounds like?  Come for a sleepover.

At any rate…

The abnormal EEG combined with the level of regression from her last seizure had her neurologist concerned.  Very concerned.  Concerned enough that, for now, they’ve decided to put her on anti-seizure meds.

Luckily the medication they chose (clobazam) has fairly mild side effect.  Stuff like ataxia, somnolence, diplopia, and dysarthria. Don’t those sound scary? Let me translate: loss of muscle coordination, drowsiness, double vision, and slurred speech. So, in other words, she might act like a teenager on a bender. Yay.

The best part is, they told me this drug is part of the benzodiazepine family. Also know as? Anyone?
That’s right, my two year old is on Valium! I’m thinking we’ll try for Xanax by the time she’s three.

 I Hate It When Im Wrong

It’s About Bloody Time

I’m doing the happy dance right now.

We finally got the call today that Vista’s been assigned to a neurologist and we go meet with him on Tuesday (Aug 11). It will be so nice to finally get some of our questions answered. Like could her hydrocephalus be affecting her balance. Should we be concerned about her seizures. Are their any concerns about her bumping her head due to the existing hydrocephalus and brain malformations.

This appointment has been a long time coming. We’ve known since Vista was 6 months old that she had a neurological issue. It took us until she was 18 months to convince the doctor of that and get him to order the MRI. We finally got the MRI in March, results in April and have been waiting, waiting, waiting, since then to get into see a neurologist.

As much as I love the free (most of the time) health care in Canada, if we were in the US we would have seen a specialist months ago. So, say what you will, but give me the option of private health care.

Find Me

TwitterRSS
FacebookEmail

I’m Connected