Last week Cayla was given a Family Pass to Adventure World from TCCP for being a Champion in The Wheelie Big Challenge but as she is too short for most of the rides we sold the pass and took the kids to Aqwa instead. The kids had lots of fun and we learned about a cheeky octopus that climbed into the fish tank next door at night-time and ate all the fish and then climbed back into his own tank!
Fourth week of serial casting for Cayla… this school holiday has been pretty boring as we have to stay away from sand and water but will plan it better for the next time. We took Cayla’s cast of yesterday as we had an appointment with Dr Langdon at Princess Margaret Hospital (PMH) in the afternoon. This cast was only on for about three days but it’s always nice to give her a bath and wash her hair before the next cast goes on.
Mike took the afternoon off and came with to PMH for this appointment, as we have both learned it’s better to have two sets of ears when lots of information is being passed around! This appointment was for Dr Kate Langdon, who is Cayla’s pediatrician, to write a letter to help with the application for the school we have chosen for Cayla next year. As we are outside the catchment area for this school we need letters from both a pediatrician and also TCCP to go with the application and hopefully that will work out well. I have said it before but will say it again, Kate Langdon is an amazing person and definitely the right person in the right job. She is just so lovely and nice and we always feel really good after we have seen her. Also present at this meeting was Nadine Smith who was the physio we met a couple of weeks ago at the Hip Surveillance appointment also at PMH. She knows Cayla’s physio Megan at TCCP and information from our appointments at PMH will be forwarded to TCCP as well which is great as I never remember all the information said on the day and/or to pass it on…!
We have been waiting for an appointment with neurologist Dr Simon Williams (also at PMH) quite a few months now but the date we had scheduled in March got cancelled. The next scheduled appointment is in June when we are away so not sure when we get to meet this man everyone speak so highly of :) But never mind, the epilepsy test we did last year came back normal so not much to discuss with him really. He was however meant to prescribe a medication to reduce drooling but yesterday Dr Langdon did this for us which is great! I can’t wait to try it but will wait a couple of days as Cayla is sick at the moment. So just under a week left of serial casting and next Friday we’re seeing Andrew at Orthodic Solutions to try on Cayla’s new AFOs and to review her need for a fixed or hinged AFO on the right foot.
Below are photos from our visit to Aqwa last weekend and some pics taken by Cayla during a serial casting session at TCCP :)
After speaking with Dr Langdon we have now received a letter for an appointment to see her colleague Dr Simon Williams. He is a neurologist at PMH and is offering Cayla an EGG test for epilepsy. Kate also wants us to have Cayla’s eyes tested just to make sure her sight is fine. Not sure if we will discuss genetics with Dr Williams but I will ask him when we see him on the 8th of December.
I have been searching the net for more information about Cayla’s condition both in English and Swedish. I know that I shouldn’t read stuff online but I just couldn’t help myself. So I know that it’s a bit unusual and I know that these extra folds are positioned on the outer cortex of the brain which controls movement in our bodies hence Cayla’s cerebral palsy.
But I have also read that it could be genetica, talking about a chromosome called Xq28, but more often a mutation. It does however sound like Cayla will now have this gene and will therefore be able to pass this on to her children in the future. A scary bit of information is that a lot of children with this condition will develop epilepsy at 4-12 years of age. But this might only be a risk for the more severe cases what do I know? I do however want to talk to someone who might be able to give us some thoughts on this so I have contacted Dr Kate Langdon for an appointment in due course.
I have also booked Cayla in with a speech pathologist from Kids are Kids as of recommendation from a friend of mine. She is prompt trained which is a technic that I think Cayla would benefit from so we’ll see how that goes. We are seeing her in a couple of weeks.
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.. :)
As we had such a bad experience with our first pediatrician that gave Cayla the diagnose we really didn’t want to go back to her for further tests. I even rang and complained about the way we were treated and the way she spoke to us and hopefully she will change some of her ways of interacting with other clients and their families. Anyway, so I’ve been calling the Centre for Cerebral Palsy (TCCP) as I really just want Cayla to be taken on by them so we can get going with the therapy etc. A very nice lady, Corrine Wray, who is working as a social worker at the centre took me under her wing and organised for us to come and meet with a pediatrician from PMH. This was her last appointment at the centre so I had to quickly rearrange a physio session with Wize Therapy and get Mike to take some time off work. It all worked out fine and on the 14th April we met with Dr Kate Langdon. She is an amazing person that is definitely working in the right field, she could have given us ‘bad’ news and she still would have done it in such a way that it would have been totally fine anyway! Luckely for us this isn’t the case, yes, Cayla has got Cerebral palsy but very mild as it only affects her left foot. She is using her left hand very well. Kate observed Cayla whilst she was busy playing with all the toys in the room. Up until this day both myself and Mike had been feeling really down about the whole thing, we were scared and worried about the future so this was an amazing day for us. Kate pretty much said that Cayla was a normal social little 2-year old, she is busy playing and went from toy to toy and then back to the play kitchen which was the favourite. This type of playing is typical for her ago so no worries at all. She said that she has got a straight posture and using her left hand very well. She suggested that Botox would be very beneficial for Cayla, especially at a very early age so that foot could come right down on the floor and improve her gait. As there is about 1.5 years waiting list at Princess Margaret Children’s Hospital (PMH) she recommended us to do it privately instead. We will contact Dr Colin Whitewood at SJOG in due course.
I still remember walking out from the centre that day feeling extremely happy and positive about the future. Really, it could have ben SO much worse so hey, lets get on with it! I am so thankful to Corinne for listening to me crying for help on the phone and organising this appointment to see Dr Kate Langdon. I’m extremely happy to have met with Kate today and I’m looking forward catching up with her in a couple of months time :)