Brainiac – Villan or Superhero?

In my last post when the ophthalmologist said “We may want to follow up with a brain scan” – that’s what happened. Sol’s Delayed Visual Maturation improved somewhat but didn’t correct to the level we could breathe easy at the 6-month mark. We were recommended to Dr Malinee (Paediatric Neurologist) at Pantai Hospital so that Sol could have the speed of his vision and tracking measured and an MRI on his brain. Sol was 6 months when he went through this.

The first test, as shown in the photos, was to measure Sol’s response time from seeing light, processing light and adjusting. Waves of light would flow past his face and his brainwaves would process this input.

The second test required us to sedate Sol as he would need to be asleep for up to an hour for his brain MRI. The hospital perfectly timed all of this so that once Sol had breast fed and we gave him a shot of the “sleepy stuff”, he promptly fell asleep and entered the chamber wrapped tight in blankets and with his head bound to a pillow. He was a trooper and never woke up during this time. Actually, it must have been some pretty good stuff as it took another hour for him to wake after the MRI. The MRI was to assess if there was any structural issues that might give us insight into Sol’s visual processing.

RESULTS – measurements for Sol’s visual tracking showed a “slower than normal” processing time. Expected. The brain MRI showed his right cerebellum to be 30% smaller in size than his left cerebellum. BOOM – the old cerebellum. Now, if you have aspirations to be a dancer or professional ice skater, you are going to need a full functioning cerebellum as balance and co-ordination are KEY. Actually seeing the size difference in Sol’s cerebellum opens a can of worms – Can the cerebellum return to a normal size? How will this affect Sol as he grows? What kind of activities can we do to help Sol “compensate”?

Once we had the test results, we met with Dr Malinee and a geneticist colleague of hers to rule out the potential of further issues. From our family history and Sol’s tests, it didn’t appear that his DVM and undersized cerebellum was linked to family history or a genetic mutation. The amount of detail and information we discussed had me in a “mind-meld”!

I think one of the key take outs from these tests and the discussions with the doctor, was to understand that Sol would have some challenges ahead that would be related to balance, coordination and meeting physical milestones. I know from my own school experience, if you were the kid that couldn’t catch a ball, then you were the last kid picked for the team. I’m going to dedicate a post to all the things we did for Sol knowing what we knew to give him the best chance to succeed physically, socially and emotionally.

The doctor advised us of the following:

1. Sol might have some “low muscle tone” which would affect his sitting and walking postures.
2. Sol might struggle to coordinate crawling or be a late crawler.
3. Sol would be late to walk and not to expect anything before 18 months, likely 2 years.
4. Sol would struggle with physical activity and get very tired.
5. And this – his speech would likely be affected and delayed.

So now that Sol is 5.5 years, how did he go?

Yes – he did have some low muscle tone or better known as hypotonia. One of the things I did notice before Sol had these tests was that even up to 6 months, when I carried him, I had to support the upper part of his back. He wasn’t able to “sit on my hip” as it felt like he would flop backwards. And Sol’s speech was definitely affected and I’ll save that for a future post too.

Let’s talk about the good stuff now. Sol crawled from 8 months and continued to crawl very effectively and with significant speed up until 15 months. He actually graduated to a bear cub crawl so that he could get around faster. When you watch someone (adult or child) try to execute a bear crawl, it takes a lot of coordination. Sol nailed this. And there is some research that indicates crawling for longer is great for brain development – I’ll take that one.

Sol started “cruising” around the furniture from 11 months and took his own unassisted steps from 14 months. By 15 months, he was walking. When you’ve been warned that this might not happen till at least 18 months, this was major celebration for us.

And that Sol would get tired of physical activity? To this day, I occasionally wish this was the case. But Sol’s natural personality type as well as his energy ensures that from sun up to sun down, this kid does not stop moving. And I am grateful for that. As we are a family that values health and physical activity, having another child that is physically active and loves it, is a blessing.

Armed with this knowledge, we were able to continue with some of the activities we had already started and add additional activities that would complement Sol’s growth. But, it also made me hyper-aware that Sol might have a higher incidence of accidents. I would say that I did become that “helicopter mum” as I just never knew if he was going to fall off something or walk into something. I must have excelled in that role as I can confidently say that he didn’t have any bumps that were any worse than normal.

RESOURCES

I don’t have any videos of Sol doing the Bear Cub Crawl but if you want to know what it looks like, click here https://youtu.be/TBmfeECk6-4

Pantai Hospital Kuala Lumpur

“One who takes the road less traveled earns the rewards most missed.”