neurologist

Please Send Comfort Food

I’m one of those people who can cry at the drop at the hat, sometimes.  If I’m frustrated?  Waterworks.  Angry?  Yup, I’ll tear up.  Watch that commercial on TV with the cute kid?  Well, you get the idea.

I’m having one of those overly emotional days, today.

Vista had a bad seizure last night.  It took her a long time to come out of it, which is very unusual for her.  Usually her seizures are short, and she’s fine right after them.

This one lasted longer and when we were finally able to wake her up after it, she couldn’t tell us her name.  She fell back asleep, which meant we had to continue to try to wake her up every little bit, trying to bring her out of the post seizure and make sure her cognitive functions returned.

Let me tell you… when you can’t wake up your kid, it’s scary.  V’s notoriously hard to wake up at the best of times.  But this?  This was different.  This was holding a ragdoll in my arms.  And just when we thought she might open her eyes she was gone again.

When we finally started to get some response out of her and I was coaxing her to open her eyes, she told me she couldn’t.  She was trying, but her eyes wouldn’t open.  Gah!

It took almost an hour for her to fully return.  That is a loooong 60 minutes of debating whether to bring her into to the ER, chatting with an on-call nurse, and repeating “Vista, sweetie…wake up and open your eyes for Mama” over and over.

This kid is seriously going to give me a heart attack.

She’s better this morning.  A little off on her balance, but otherwise seems to be alright.

I’ll be calling her neurologist on Monday morning to see if they want to do some level checks for her meds, since she’s had a couple growth spurts over the past could months.

But the fact that this seizure was so different than her normal ones… doesn’t sit well with me.

It makes me nervous that they’ll want to talk brain surgery again.  Which REALLY doesn’t sit well with me.

 

So while I’ve been doing the classic ‘worry about things you have no control over’ this morning I realize… wait… where the hell’s my cat?

I haven’t seen him since yesterday.

He always comes home.  Several times a day.  To eat, and get pets, and shed all over my floors.

But, no sign of him.

I couldn’t be Bil’s annoying useless cat that goes missing.  Noooo…it has to be my cat who I love and adore.

*sigh*

 

So I quit this weekend.  And in lieu of crying I’m eating ice cream, and carbs, and other random junk.  Please send wine and margaritas to wash it all down.

 

 

Crazy Going Slowly Am I

Remember that song we sang as kids that went

“I am slowing going crazy.
1…2…3…4…5…6.. switch.
Crazy going slowing am I.
6…5…4…3…2…1…switch”

Yeah, that kind of describes my life right now.

Last night Vista finally did what I’ve been afraid she was going to do for a while, and aspirated on her meds.  That means her meds went into her lungs rather than into her stomach.  That is a bad thing.  A very, very, very bad thing.

And let me tell you… nothing induces panic faster than watching your kid turn completely blue.  She wasn’t able to make any sounds,breathe, or cough, which meant her airway was completely blocked.

I still get shaky just thinking about it.

I was able to get her breathing again with several abdominal thrusts, then bundled her up and took her into the hospital for a quick check.

(Let me insert a PSA here encouraging you to make sure you’re up-to-date on your First Aid and CPR procedures.  It can, and does, save lives)

Luckily she didn’t seem to sustain any injuries from the incident, so now we’re just watching for signs of a bronchial infection.  Wheee!

The biggest implication of this whole incident, though,  was that it means giving her liquid meds is no longer an option.

The risk of her aspirating again, overrides the need for the anti-seizure meds.  Which is saying a lot.

So I spent the day on the phone with Vista’s neurology team trying to figure out what to do next.

We went in and met with the therapist who is working with us to teach V to take her meds.  She said that Vista is ‘beyond her expertise’, and so we’re pulling child psychologists onto the team now.  The word ‘Asperger’s’ was tossed out and the need for an assessment to see if that’s what we’re dealing with and the reason we’re having so many challenges was raised. So that’s a third person who has suggested V might be Asperger’s.  We have a date set in November, now, for her to be screened for the Autism spectrum.  I guess we’ll see what they come back with then.

But that still left us with the issue of what to do in the mean time.

We went over every possible option with the team, including taking her off meds completely.

By the 5pm it had come down to 2 real possibilities.

Putting an NG tube in or switching her meds.

Neither option makes me feel warm and fuzzy.

For now, I think we’ve decided to attempt to switch her meds.  We’re going to try a med that has a pill I can crush and make into chocolates, like I do her other pills.

The med they’re considering right now is phenobarbital.  Barbiturates FTW!  I’m pretty sure my 3yr old will be a full blown druggie by the age of five.

I’ll find out tomorrow morning what the official decision from her neurologist and we’ll make the switch.

… Crazy going slowly am I.  6…5…4…3…2…1…SWITCH.

 Crazy Going Slowly Am I

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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We’re giving away, hot off the press, Aidan Donnelley Rowley’s brand new novel Life After Yes!!

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The contest is open to everyone (American, Canadian, Martian, BlogHer attendees, those partying with us at BlogHer@Home, those who have never heard of BlogHer).  All you have to do is leave a comment on this post.  So go…shoo… why are you still here??

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

May I Have This Dance?

Sometimes I feel like, as a mom, I have these wonderful, magical powers.

Have a boo-boo?  One kiss from my lips makes it feel all better.

Crying over spilt milk?  One hug with my arms wrapped around you makes it feel all better.

Scratches, scrapes, hurt feelings, and insecurities are no match for my mommy powers.

But right now we’re battling sometime that can’t be fixed.

Vista’s brain.

Would it be ironic to say that it has a mind of it’s own?

Because some days it really feels that way.

Sept2009EEG 300x199 May I Have This Dance?We finally got her EEG booked for March 9th.  Yeah, a month away.  This will be her third and that’s 3 too many.  Believe it or not, out of all the tests she’s had in her life, these EEG’s are the worst, because it involves me holding her down while she screams and cries and screams as they attach the electrodes to her head.  After getting her all worked up, I have to calm her down enough to fall asleep.  And after sleeping for 10 minutes or less, I get to wake her up.  I end up going home after them and crying as Vista clings to Bil wanting nothing to do with me.  And I can’t blame her.  I wouldn’t like me much either after all that.

But what’s the most frustrating is that I know the test will come back normal.  Just like the last two.  So I have to put her through all that for nothing.  Or rather, so we can see the neurologists so they can tell us “Yep, everything still looks OK, other than her normal brain malformations.  We don’t know why she’s seizuring or why she regressed so much after her last seizure.”

Did I mention being a mom also makes you a psychic?

I had a long talk with Vista’s Speech and Language Pathologist yesterday as she put V through her paces.  She’s confirmed for me that it’s not uncommon for people to regress after every seizure.  It’s just something that is.  And will be forever.  As in, when she’s an adult and has a seizure, she will experience loss of skills.

I watched, as we talked, as Vista struggled with a toy that a month ago had been a breeze for her to play with it.  A toy whose ins and outs she had mastered.  Now, it’s like she’s seeing it for the first time.

It makes me sad for her.  It makes me frustrated for her.  It makes me angry for her.

And Vista is all of those things right now as she struggles to make herself understood.  She went from being a toddler who was well on her way to being at a normal speech level.  She was talking in sentences.  She was easy and clear to understand.

Now our days are filled with “I’m sorry, sweetie, I don’t know what you’re saying” and she screams the same garbled words at me over and over hoping that volume will make me get what she is trying so hard to communicate.  Words that only weeks ago, I understood perfectly.

How do you explain to a two year old that half of what she’s trying to say is now reduced to babble sounds?  You can’t.   How do you explain that even though she was able to open that door a few weeks ago, it’s going to take some time for her to learn how to do that again?

So the next couple of months will be spent trying to return her words and motor skills to her.  And trying to manage the frustration and anger, both hers and ours.

I’m hoping one day we’ll learn this dance.  One step forward, two steps back, side shuffle, side shuffle. This stumbling along, trying to figure out what comes next is making my brain and heart hurt.

 May I Have This Dance?

Wordless Wednesday – Neuro Appt

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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.

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