diagnosis

It’s Time

My friend Melissa came over for coffee yesterday.  It’s a weekly ritual we’ve had since our girls were only a few months old.  A break from the usual routines to stop and enjoy someone’s company.

It’s funny how with some people, you never run out of things to talk about.

And I think that’s the sign of a good friend.  When the most mundane details of your life are interesting and important to them.  And vice versa.

As we sat chatting yesterday, I quietly told Melissa that I had finally handed in the papers to qualify Vista for an aide.

“This is a good thing,” she said, leaning across the table.  “It’s time.”

It’s time.

Yes it is.

When we first started down this path of diagnosis with Vista, we were told by several medical professionals “well, I wouldn’t worry too much about her delays.  Most kids normalize around the age of 5  and you can’t even tell there was any issues when they were younger.”

Part of me has been holding on tight to that.  Tighter than tight.

It’s was like a mantra.  “She’ll turn 5 and then she’ll be OK.  We just have to wait until she’s 5.”

I know it sounds ridiculous reading it.  But it was that light at the end of the tunnel.  Five was the magic number.

And so I put off getting an aide.  After all, we really didn’t need one.  By 5 or so she’d catch up.  I mean, look at her.  She looks perfectly normal.  She’s not one of those kids that needs an aide.

Only she does.

And it’s time.

Time to let go and realize that Vista isn’t going to magically be all better on her 5th birthday.

Time to admit that we need help and we can’t keep doing it all on our own.

It’s time.

Only… I wish it wasn’t.

 Its Time

Steady As She Goes

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…

______________________________________

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.

Vatherbday Steady As She Goes

The Vista Summary

For those trying to keep up with the latest progress/diagnosis/prognosis of Vista here’s a short (OK, not so short, but when is anything I ever say short?) update.

If you’re not interested in the whole mommy/kid/doctor/diagnosis type thing then move along, this is not the post you’re looking for.

Background

Vista was born 4 weeks early and spent a week and a half under UV lights for jaundice, due to a ABO blood incompatibility between her and I. She also had an infection for which she was on IV antibiotics. Otherwise, she was a very healthy baby.

In The Beginning

We first started noticing issues when Vista was about 3 months old. She wasn’t as flexible as most babies (she couldn’t bring her feet up to her mouth to chew on, for example. Which, quite frankly, I was OK with, because really? Eeeewwww. Feet. Even if they are baby feet, which are all cute and everything, but still…chewing on your feet?). Then we noticed she couldn’t sit up like other babies, and she wasn’t babbling either.

Around this time she also became a colicky baby. If you’ve never had a colicky baby, count yourself lucky. I can remember telling my husband one day “I understand, now, how shaken baby syndrome happens. I don’t condone it, I would never do it, and it should never happen, but I understand now how a parent on the edge already could reach the breaking point so quickly when you’re with a child who cries 24/7″. There were a few times where I had to lay her, still crying, in her bed, and step outside for a few minutes to regain my sanity. But I digress… She was colicky, which was eventually diagnosed as reflux. This coupled with an eventually discovered milk allergy made for lots of fun the first year.

By a year old, though, we were starting to see more developmental delays. She still wasn’t crawling or even really rolling over much, so we managed, through our Public Health Services, to get a referral to the Early Intervention (EI) group. We now have our own EI child development specialist, physiotherapist, occupational therapist, and speech pathologist that work with Vista a couple times a month to keep her caught up on her milestones.

But we still felt there was something more going on. This was confirmed when she started having mild seizures. Her pediatrician sent to referrals to the neurology department at the local Children’s Hospital. They refused to see her both times. So we finally convinced her pediatrician to request an MRI, himself, after an EEG came back normal.

MRI Results

smiles 300x213 The Vista SummaryEven though we were expecting the MRI to show something that would explain the delays, nothing prepared us for the words “There was abnormal results on the MRI”. The next half hour passed by in a blur as we tried to take in and understand the flurry of medical terms that were being thrown at us.

“…brain malformation…”
“…absent septum pellucidum…”
“…thinning corpus callosum…”
“…hydrocephalus…”

Wait! Hold the boat! Did you just say my daughter is missing part of her brain?!?

I looked over to where Vista was sitting reading a book with Bil in the doctor’s office. She looks normal. How could this beautiful little girl be missing something in her brain. I couldn’t comprehend it.

We still don’t really know, at this point, what the ramifications of these issues are or will be. We’ve been referred to a neurologist (again) and hopefully will have more answers once we meet with him. The tricky thing about a missing septum pellucidum is it’s never the only issue and it doesn’t cause the issues you see in a child. Most cases of people where their septum pellucidum is missing, also have a malformed optic nerve that also causes blindness or other visual issues. But we’re not seeing that with Vista. So, at this point, we suspect that her delays, reflux, constipation, and seizures may be due to the thinned out corpus callosum. But all that’s just conjecture until we talk with the neurologist.

In the mean time, we’ve also consulted with a geneticist. They are running a bunch of tests to see if they can pinpoint the cause of the delays from a genetic syndrome point of view. So, they’re hoping to rule out Fragile X, Triple X, and other things like that. Or rule them in, as the case may be. At any rate, we won’t have results for a while…up to three months.

That’s OK. We’re really good at waiting these days. Vista’s almost two. We’ve spent almost two years fighting the system to prove that we’re not just neurotic parents and that there was something really wrong with our daughter. Three more months? Yeah, we can deal with that. At least, now, things are being done, and doctors are listening to us. And more importantly, we’re able to get Vista the help she needs to be as normal as possible.

Some things we’ve learned over the past two years:

  • Parents know best. If you feel there’s something wrong with your child there usually is.
  • The only person who’s going to advocate for your child is you
  • Don’t be afraid to question the doctors and ask for clarification.
  • If you’re not comfortable with the ‘wait and see’ approach the doctor is taking, say so. Ask for different tests, more tests. Quite often they won’t suggest it.
  • Don’t back down. When you’re told you’re just a neurotic parent, that your child is fine, that you’re putting them through tests for nothing. If you truly believe something is wrong, pursue it.

The part that really scares me about this whole thing is, how many kids go undiagnosed? How many parents, when told they’re just hyper-vigilant, back down and just accept that. I suspect more than fight to have their child diagnosed. If we hadn’t fought, we would have probably never found out about her brain condition and we’d just have a child who was labeled as ‘slow’.

Makes you have a lot of faith in the medical system.

Find Me

TwitterRSS
FacebookEmail

I’m Connected