Archive for the ‘More Medical Maelstrom’ Category

Sometimes I look at Vista and there’s this sense of awe and amazement that this little child is mine.

But as each day passes, she’s less ‘mine’ and more her own person.

Sometimes I have to remind myself to step back and remember that the way she reacts to things isn’t necessarily going to be the same way I react to things.

She has her own way of doing things.  And is definite about how her world is structured.

As time goes on, we realize more and more, that she’s not fitting into our world but molding us into what she needs her world to be.

And that’s not without it’s challenges sometimes.

One of our biggest frustrations has been around asking her to do simple things.  Every day tasks.  Using words she knows. And yet there seems to be no comprehension.

We assumed it was her three year old self being, well, a three year old.  Defiant.  Willful.  All the things a child that age can tend towards.

Until we did one of a speech and language assessment with her a few weeks ago.

Her verbal scores came back as expected.   She’s progressing wonderfully in her talking and ability to communicate.

Her receptive scores, those that indicate her ability to take in and process what we’re saying, were a surprise.

Despite the fact she knows the words, the meaning doesn’t always translate when you speak with her.

So when we we’re frustrated over her seeming lack of comprehension, it’s because… yeah… she really doesn’t understand.

Complete *headdesk* moment.

A neuropathway issue.  Apparently it’s not all together uncommon in kids with her types of brain malformations.

But now we know.  And that means we can start focusing on trying to rewire those pathways.  Because a childs brain is an amazing, changing, thing.

She may not understand us, but we’re slowly learning to understand her better.  And changing the way we do things to help her be who we know she can be.

We’ve started adding back in some signing, to see if visual cues help with the comprehension.  But beyond that, we don’t have a lot to go on.

So I’m turning to my brilliant blogging / twitter friends.

Suggestions on what you would do?  What you’ve seen work? What you think we could try?

Friends and family who live out of town have been asking for a Vista update.  So if you’re not in the mood for medical drivel skip over here where Kim is asking the craziest place you ever had a quickie.  Oh come on.  You know you want to share…

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Even though I haven’t been blogging and tweeting much about it, Vista has continued to seizure despite the meds she’s on.  She did really well on her first med, Clobazam, until a growth spurt rendered it useless.  She was on the highest dose do the decision was made to add a second drug, Trileptal.

After the Neuro prescribed the second med, they also decided they wanted to see her in office and reassess.  They’re very concerned at the amount of regression and behavior changes we’re seeing in her after her seizures.  So, getting her seizures under control has become priority #1 in her medical regime.

At that visit we also got V’s latest diagnosis:  Symptomatic Partial Epilepsy

Not a huge shock, since she’s been seizuirning for 3yrs.  What it means is she’ll have to go 2yrs seizure free on meds before they’ll try to wean her off of them to see if she might have grown out of the seizures at some point.

Unfortunately we haven’t made it two weeks yet.

V hasn’t done really well on the Trileptal.  The higher doses make her really irritable and the lower doses still aren’t controlling the seizures.

So, they’ve now added in a third med called Valproic Acid.  She’s only been on it a few days, so only time will tell how this one works.  We’re keeping our fingers crossed that third time is a charm.

The down side about the Valproic Acid is that she’ll need her levels checked.  This means the blood tests.  But really, if it controls the seizures, it’s worth a few needle sticks.

On the upside, since her last growth spurt she seems to have mostly outgrown her dairy allergy.  Yay!  Pizza and ice cream for everyone!  We still have to watch how much dairy she eats (too much will upset her tummy a bit), but all the severe symptoms are gone.

All and all, she’s doing not too bad.  She’s growing like a weed (my 3yr old is wearing size 6/7 shirts!), loving summer sun, and content knowing she’s an adored princess.

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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And since I’m sick of being all ‘woe is us’, why don’t you head over to the BlogHer@Home site.

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

You’re definitely going to want it on your summer reading list, so you may as well win a copy, right?

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??

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.

While Vista napped this afternoon, I sat in my favorite chair in the living room, surrounded by a sea of scattered toys, jotting down updates and notes in her Care Notebook.

Next month will be her third birthday.

Three years of test results, assessments, letters from doctors, and all her Early Intervention visit records sit in this binder.

I have pages full of names and numbers for doctors, nurses, and therapists of all kinds. Lists of things to ask and review with her pediatrician at our appointment tomorrow.

It has been a hard fought battle to get where we are today.

But I finally feel like we are in a good place.

A place where we’re being heard.

A place where Vista is getting the support she needs.

When I noticed she woke up again with tremors, something she hasn’t had since starting her anti-seizure meds, I was able to place a phone call to her neurologists office, discuss it with them, and get her meds adjusted over the phone.

Thursday I’ll be attending a parent orientation session for a 9 week preschool child development treatment program that Vista’s been accepted into.  This will give us access to an Occupational Therapist, a Speech Language Pathologist, a Physiotherapist, a Child Psychologist, and a Social Worker, on a weekly basis.  These people will work with Vista and give her, and us, the tools we need to help Vista with some of her sensory and behaviour issues.

We’ll be working with this team and with Vista’s doctors to try and qualify for government funding so Vista can have an aide to help her at school.  She may qualify on a medical diagnosis because of her seizures, but that’s going to be a wait and see game.  I’m hoping it’ll go through, so she can go to preschool a few days a week in the fall.

And thanks to the wonderful people at the Calgary Cerebral Palsy Association, Vista now has a bike to ride this summer.  It’s wonderful to see her be able to do some of the peddling on her own as she squeals “Look at me, Mommy!  Look at me!”

I’m looking, baby girl, and I’m so proud of how far you’ve come.

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.

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.

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.

My Follow Friday post was bumped when Vista got scheduled for an early Friday morning CT scan, late Thursday afternoon. This came about after talking to our family doctor about some regression we were seeing since her last seizure. Apparently regression can be a sign of a stroke, so they wanted a scan to make sure that wasn’t the case (and it’s not… the scan is fine as far as we know). Now we’re just waiting for them to schedule an EEG for her, which, I can tell you right now, will also come back normal.

As we pulled up to the hospital Friday morning, though, Vista chirped from the back seat “Oh! The hospital. We go see doctor?”

My heart broke a little. No two year old should recognize the hospital from the outside of the building. No child should know that pulling up to a hospital means a doctor is involved.

And it made me think of all the reasons she’s been to the hospital and all the different doctors we’ve seen there in the past two and half years.

Some of those reasons have been as a result of her brain issues. But a lot have been because she was born to early and the fact that her system just wasn’t developed enough to handle all the things it needed to.

And so this Follow Friday is dedicated to Heather’s Maddie, who was also born to soon. And it’s dedicated to my friends who are walking in Maddie’s memory to raise money for the March of Dimes, so that one day no child will have to deal with endless doctors visits because of complications from prematurity.

• Messponential - I love Colleen. Her and I talk almost every day, even though we live a country and two time zones apart.  I cried when she told me that this year she’s not only marching for Maddie, but for Vista as well.  If you’d like to support Colleen in her walk, too, you can  click here.
• Adil320 - Ally is one of my roomies for BlogHer this year.  I’m also dragging her to get inked with me while I’m down there (just don’t tell her husband that I’m a bad influence, kai?).  In addition to Maddie, Ally is also marching for her close friend’s baby girl, Natalie Diana, who was born at 31 weeks.  You can read more about why Ally’s marching, and support her, on her March for Babies page
• Mom2snk - Meredith and I first met through our husbands (yes, we’re both SharePoint widows).  And in a weird, 6 degrees of separation twist, found out she’s also friends with Colleen.  She’ll be joining Colleen on April 24th in for the Jacksonville Friends of Maddie

If you make one $5 donation this year, I would encourage you to consider the March of Dimes.

Just a quick Vista update for those who care.

So… we had an appoint with our family doctor on Monday to talk about Vista’s inhalers and I also wanted to talk to him about some of her specialist flagging some of her behaviors as autism markers.

Visiting Dr.F is always interesting. First of all he is the ONLY doctor that Vista likes. She will let him check her, and even pick her up, with no screaming and crying. And then there’s the fact that Dr.F totally think the sun rises and sets with Vista. You see, she was his very first patient in his practice (in fact before he even had a practice). He was her doctor when she was in the Special Care Nursery (a step down from NICU), when she was born. And so he’s always taken a special interest in her.

I love the fact that she’s so relaxed with him. It makes a visit to the doctor so much easier. And I also like the fact that I feel like he listens to me and doesn’t dismiss me as a neurotic mother. That’s a rare and valuable quality in a doctor these days.

The first thing we discussed were her inhalers. And the fact that, yes, the doc at urgent care had prescribed her an inhaler that was way above her age range (thank you Dr. Lori for bringing that to my attention).  We confirmed that she doesn’t need to be on inhalers full time, but when she gets a cold, she’ll go on them for a week or two to keep her airways open.  I’m happy with that arrangement and it seems to work for Vista.

Then we talked about some of the autism makers we’re seeing.  Stuff like lining up toys, counting things over and over and over, and other OCD quirks she has.  He agreed that it was probably time to get her in for a formal screening, so he’s made a referral to the Children’s Hospital in the city.  He’s not overly concerned, especially because he’s thrilled with where she is with talking and walking in light of her brain issues.  He said  that any autism she may have would be mild and it may just be her quirky self.

Before we left, I asked him if he had received a call from Children’s Services back in December.  Surprise, surprise, they didn’t call him either.  That’s 3 names I gave them and they called none of them.  Unreal.  I still have to check with Vista’s pediatrician to see if they talked to him.  What I found interesting is Dr.F guessed within 2 seconds of hearing my story who it was that had reported me.  He’s asked me to gather some information about the CS investigation and pass it on to him and then he is going to file a formal complaint against the pharmacy (and pharmacist) who filed the report with CS.  I’m apparently not the only person who has had problems with that pharmacy.

I have to say, I came away from this appointment feeling good about where things are and very supported.  Having a good doctor, when you have a child with issues, can really make such a huge difference.

As we were walking out of the office, we ran into Dr.F’s wife who had brought him some coffee.  The Dr introduced us and his wife immediately looked at Vista and said “Oh!  Is this Vista Avalon?”.   I must have had a “how the fuck do you know my daughter’s middle name” look on my face because she started laughing and explained that Dr. F talks about Vista all the time and they both just love her name, so it’s always stuck with her.  Huh.

The biggest surprise of the whole visit, though, came with Vista gave Dr. F a hug before we left.  And not just one of her ‘I’ll sort of lean into you and let you touch me’ hugs.   I’m talking about an arms around his neck, squeezing hug.  Apparently even she knows a good doctor when  she sees one.

I’m beginning to realize that last winter we really lucked out.

Vista was for the most part healthy and didn’t come down with a lot of colds or sickness.

This year… *sigh*  Is a different story.

As soon as she gets over one cold, we get a week off before she starts getting  sick again.

Bil and I are so over it.

The whining,  the hysterics every time she sneezes, the being up all night because her nose is runny and that is an absolute crisis in her world.

And with every round of being sick has come a round of croup.  Except I don’t think it’s croup.  I think  it’s the start of asthma.

So with this latest round of sickness she’s back on inhalers.

There are a few things you learn very quickly when you have a child who is chronically ill.  That is to trust your instincts, trust that you know your child better than any doctor, and that doctors are not infallible.

I spend a large part of my days, when something new comes up, reading medical journals online.  Researching, cross referencing, eliminating possibilities.

When Vista was little, and her doctors insisted that she was fine and just slow to develop because she was a preemie, this research got them to agree to do an MRI (against their better judgment – they were just humoring me, you understand).   But mother’s instinct didn’t fail me and the doctors were shocked when her scan revealed a brain malformation and missing pieces.

And when I suggested when she was only 3 months old, that she might have a milk allergy, which was summarily dismissed by all her doctors… well, I should have listened to my mother’s instinct then.  By the time she was a year old, her GI specialist grudgingly agreed that she might have an *mild intolerance*.  Months of food diaries and elimination diets revealed a severe milk allergy.  Bad enough that she couldn’t even eat beef and a kiss on the cheek from someone who had just had a drink of coffee with creamer in it would leave an angry red mark on her skin.

Now I’m preparing  to do battle on the asthma front.

This time I have my own experience to draw from, though.

As a kid, I was diagnosed with croup over and over.

I had chronic bronchial infections.  There were years I was on antibiotics 11 months out of the year.

But it wasn’t until I was a teenager that a doctor finally shook his head, handed me an inhaler, and sent me for asthma testing, which confirmed  the diagnosis.

See, the problem was, even in the midst of an asthma attack, I don’t get the tell tale bronchial spasms that are what most doctors use to diagnose asthma.

After Vista’s coughing attack at Christmas that left her breathless and blue, we found out she doesn’t get bronchial spasms either. But the attack she had was a carbon copy of what my asthma attacks used to be like.

So, now, once again I am researching, reading, and preparing to make my case before the judge doctor.