The same day as Cayla got her foot splints (AFO’S) at TCCP we had an appointment with Dr Langdon at PMH to go through the MRI scan results. I was pretty nervous but when we got to there both Mike and I were more upset about the new AFO’s than the MRI results.. I know it is what it is, not much we can do about it… but it still sucks…
It was lovely to see Kate again, she is such a great paediatrican! She skimmed through her notes and told us about the findings of the scan. Sometime between week 12-16 in the vomb Cayla has developed extra folding on both sides of her brain and apperantely it’s better to have them on both sides than only one side. So no lack of oxygen at birth, bleeding, stroke, scaring etc but these extra folds… It’s called “Bilateral congenital perisylvian microgyria (CBPP) and Kate told us that it is a pretty rare condition. She had printed an article about it but told us not to compare Cayla with those kids as they were a lot more severe. What’s interesting is that many kids with this also have pseudo bulbar palsy which is ongoing difficulty with multiple bulbar functions such as speech, feeding, saliva control. Cayla is drooling a bit still and her speech is delayed so there is the answer to that. Kate said once again that they probably don’t know much about kids with CBPP that is on the milder end of the scale such as Cayla. She wasn’t particularly worried about Cayla and still thinks that she is a very typical 2.5 year old which for us is great to hear!
For us, it has been great to have an MRI scan done, to find out the organic reason for Cayla’s cerebral palsy and speech delay. I was very sceptical a couple of months ago and really didn’t care but I can now see the value of having this information. Now we know that most of our efforts and money/funds will be put towards improving Cayla’s speech as this is clearly affected in her case. I’m glad that I had all of this explained to me before the MRI scan in such a way that I was actually looking forward to the results even thought it is of course scary at the same time. I also now know that it wasn’t my fault… yeah, I was beating myself up for several months thinking I had totally done this to my little girl..
Each to there own but I would definitely recommend having a scan done. Just saying.. :)