It’s been 8 weeks since Cayla’s Botox injections at PMH. She has since then had about four weeks of serial casting to stretch the muscles in her left leg and foot. Apart from a small pressure sore on her heel she’s done really well and we managed to get about five degrees dorsiflexion. She has got a new pair of AFOs and she picked the same pattern as last year; purple butterflies.
Earlier in the week we had our post-botox appointment at PMH. This is where we meet with a pediatrician and a physio therapist where they will assess the effects of the Botox injections. I had quite a few questions and wanted to talk to them about Cayla’s laryngospasm that happened during her last GA. You can read about that here. We really don’t want to be worried every time she goes under a general anesthetic which is twice a year for her botox injections.. There was a new pediatrician there that I have never met but apparently she was in the room when Cayla had her last botox so she was aware of the issue re laryngospasm. We spoke about it whilst the physio was checking Cayla’s legs and feet. It was a good chat and the pead pretty much said that they are not overly keen on putting Cayla under a general anesthetic as it is a very high risk that it will happen again They are not 100% sure why but think it has got to do with the lack of saliva control. We talked about possibly doing the injections without a GA but we’re not sure Cayla is old enough yet and I don’t want to freak her out either. So our plan of action is a referral which will be sent to the orthopedic clinic for a specialist to access her in regards to a future surgery. This won’t happen in the next year or even two so no dramas but it will be good to get some more information about our options. Until then we have to control her tight leg muscles with stretching, AFOs, serial casting and Electrodress (Molli). We have so far been using the loose electrodes but will try the outfit when we go to Sweden in a few weeks time. I have no clue how it all will work out but definitely happy to give it a go. The Botox injections have so far definitely been a great help and Cayla is walking better than ever. She is putting much more weight on her left leg and have recently been discharged from the Hip Surveillance Clinic at PMH which is great news! We will also inquire about the WalkAid but that will have to wait until we’re back from Sweden. 12 more days and we’re on the plane!!
A few photos from Nathan’s life in the last few weeks; he’s been invested to Cubs Scouts, received an Honors Certificate, and participated in the school’s yearly cross country carnival. Go Nathan! Also big congratulations to my sis Linda who have just graduated from a Swedish gymnasium. This is a secondary school which prepares the student for higher education at a university – well done Linda!
We’re in the middle of the Spring school holidays here in Perth and it’s great to chill out with no stress in the mornings and no after school activities. Mike had a day off last week and we took the kids to The Royal Show. It was a glorious sunny day and we spent over six hours there and had a great time! Kids came home very tired but happy with a show-bag each.
I have done my first wedding with Fine-Line Photography for the season and I’m looking forward to many more in the next few months. Unfortunately it started to rain during the outdoor ceremony but the sun came out just in time for the formal photo shoot afterwards. The light was so pretty as the sun came out from behind the clouds shining on the bride and her sparkling white dress in the middle of the green lush vineyard! Magic….
On Sunday morning at 6.15am we all jumped into our car and drove to Champion Lakes in Armadale for Nathan’s first Duathlon! He had to run 500m, cycle 2km and finish off with a 250m sprint to the finishing line where he received his medal! He did so well and we are so proud of him for completing the race and also raising money for Cayla and other kids with Cerebral Palsy! Nathan thought the bike ride was quite nice but that the running was hard work – hahaha! Very funny and I was happy that my bike riding husband heard him say it too. ;) My training is still going well and it’s finally light when I drive to the interval sessions at 5.40am in the morning. I’m currently running about 70km/week including the 30km long slow run on Sunday morning. This will increase in the next couple of months as I start building towards the 6inch trail marathon (46km) in December. Just a tad nervous but have read somewhere that a challenge is not a proper one unless it scares you so there we go..!
Yesterday we took Cayla to Princess Margaret Hospital (PMH) for her 6- monthly Botox injections. This was the first time she had it done at PMH and it has only taken us about 2,5 years to get to the top of the waiting list. As some of you may remember Cayla fell into our coffee table about 18 months ago and knocked one of her front teeth… In the beginning of the year the dentist explained that the tooth had died and needed to be removed :( Not great but nothing we could do so it was decided to take it out at the same time as her botox at PMH so that is what happened yesterday. Botox in her left leg and tooth extraction. All went well and very fast, the staff at PMH are so nice and very experienced. Cayla woke up fine and had some toast and apple juice before we were good to go home. When we came home Cayla vomited all over the floor, had a shower, some panodil, soft pasta for dinner and then bed. The tooth fairy came for a visit and left a $2 coin under Cayla’s pillow. I though that she would look really weird without her tooth but she looks fine and still very cute!
We have finally heard back from the neurological psychologist from PMH to discuss Cayla’s test results that was sent to us in the post a while ago. It was a great chat and the psychologist pointed out that Cayla’s cognitive development is going ok, being age appropriate but her language development being under which we already knew. She also said that she think it might be good for Cayla to attend a Language development school which is something we had already started to look into a while ago. These type of schools offer an alternative way of learning for kids with severe speech and language delay/difficulty from Kindy up to Year 3. After that they will go back to mainstream schools. It is difficult to get a place and they need quite a few tests to be done and forms to be filled out but we might give it a go anyway, we’ll see.
They also require reports from Cayla’s speech pathologist, her school and the results from the neurological psych test that she has just done. As soon as our speechie from TCCP is back from holidays I will ask her to help us with the application.
A couple a days ago we had Cayla’s first pre – Botox appointment at Princess Margaret Hospital (PMH), it has taken roughly two years for her to get in through the public system. Luckily we have private health insurance and have been able to see a private doctor until now. Or Cayla may still have been walking up on her toes on the left foot and I’m not even sure she would have been able to walk by herself either. She started to walk independently a couple of days after her first Botox when she was 2 years and two months old.
The doctors checked her range on both legs and feet and came to the conclusion that she definitely need Botox in her left calf but nothing in her right. This is so confusing as some specialists are saying that she needs Botox in her right leg as well but hey whatever, I’m just gonna go with what they say at PMH for now. So next Botox is booked in for the 25th March.
Cayla also had her yearly hip surveillance on the same day as our pre-botox meeting. This is done by one of the physio therapists at the hospital and monitors the indicators towards progressive hip displacement. Extreme tightness in the groin and hips can often lead to hip dislocation in children with cerebral palsy. The physio examined Cayla’s movements and flexibility and sent us off for an x-ray. The prime radiological measure for hip surveillance is migration percentage and this x-ray was compared to the one she had done twelve months ago. The x-ray showed an improvement on the right side which is now looking very normal and the left side is still at about 25% which is not great but ok. The x-ray we did when Cayla was 18 months and before we knew she had cerebral palsy showed a migration percentage (MP) of 30% on the left side so we can definitely see an improvement.
Normal hip – MP < 10%
Near normal hip – MP >10% 15%
Dysplastic hip – MP >15% 30%
Subluxated hip – MP >30% <100%
Dislocated hip – MP > 100%
After coming back from school drop-off this morning a letter from PMH was waiting in the mailbox. It was the results from Cayla’s neuropsychological test she had done a couple of weeks ago. The peadiatric psychologist said she would contact us and let us know the results either over the phone or in person so it was a bit strange to receive a letter in the post. Anyway, in short and from what I can make out of it, the results are alright! Cayla shows good development of general cognitive skills (age appropriate) and (as we already knew) her development of language skills is more delayed with expressive language skills much worse than receptive language skills. It was recommended that a review neuropsychological evaluation in 2-3 years may be helpful in monitoring Cayla’s development in order to detect and provide appropriate intervention strategies. I’m feeling pretty happy with the result and this will give us an indication on what areas we need to focus on over the next couple of years. Not sure where to go from here but as long as she is enjoying kindy and keeping up with her friends then that is all we can ask for right now I suppose. We continue to take Cayla to speech pathology sessions at TCCP but also through two private services. Her “talker” (Vantage Lite) will also be an important part in the long-term plan to improve her speech and language. Just need to get into habit of using it..
Cayla is still sick so had to cancel her physio appointment and hydro therapy that was on today’s schedule. I was too tired to get up for a run this morning but did a hill/interval session on the treadmill instead. I knew my treadmill would come in handy now and then! Actually, it was on the treadmill my running journey began when I decided to do the “couch to 10k” app about 15 months ago (thanks Karen B!). I still do some running on it but only if I really have to… It is a lot more fun to be running outside for sure.
Last week we had an appointment at Princess Margaret hospital (PMH) for Cayla to do a neuropsychological test.. Sounds scary doesn’t it?! I thought so too and wasn’t overly keen on having this type of test done. Our pediatrician Dr Langdon thought that it might be a good idea to do the test and get a baseline as to where Cayla is at right now so she organised a referral last year. We see this test as a way of finding out Cayla’s strengths and weaknesses and give her the help she may need accordingly. We already know that her receptive and expressive language will be under but will see what else the test results will reveal.. scary…..
I wasn’t allowed to be in the room with Cayla during the testing but had to wait outside and fill in a couple of forms rating Cayla from 0-3 in various areas. The scores from these forms and the outcome of the practical testing will then be compiled by the psychologist and she said that she will let us know the results in about 1-2 weeks.
This week Cayla is doing three whole days at school with her 20 classmates and she will be very tired for sure. I am keeping myself busy with various things such as Parent Focus meeting at TCCP, a visit to the sports physio, lunch with friends and running :)
Oh and cleaning the house, shopping for groceries and preparing for all the lovely dinners I plan to make this week……. ;) Maybe it’s time to invest in a Thermomix after all..!
We have been to see Dr Simon Williams at Princess Margaret Hospital (PMH). He is one of the neurologists at PMH and I have only heard very positive things about
him so it was very exciting to finally meet him. I don’t actually know why we had an appointment with him but suspect that our pediatrician Dr Kate Langdon had organised it quite some time ago? I thought we would have met him last year for Cayla’s epilepsy test but he wasn’t there to do the test. This man seems to be quite busy and difficult to get an appointment with so we definitely didn’t want to miss this opportunity and it turned out to be a great and very informative meeting.
We mainly talked about PMG which means polymicrogyria. This is the name for the small extra folds that Cayla has on her brain which are also causing her cerebral palsy. It’s a rare neuronal migration disorder in which neurons fail to migrate normally up into the brain from where they are born resulting in structurally abnormal cerebral hemispheres. The name Polymicrogyria broken down describes its characteristics: Poly (many) micro (small) gyria (folds) in the surface of the brain. Dr Williams described it like 6-layers of scaffolding in which each cell had to go through the different levels to create its own layer. Layer 2 has to go through layer 1 to find its place and layer 3 has to go through layer 1 and 2 to the right place and so on. This is a process that happens when the surface of the brain developes in the 2nd trimester and it doesn’t need much at all to disturbed this delicate process. In most cases the cause of the condition is unknown but it can be due to certain infections or a lack of oxygen to the fetus.
Researchers are investigating the genetic causes of polymicrogyria and we have recently sent of a blood test to the Genetic Lab in Rockingham to find out what could have caused the PMG in Cayla’s case. When an individual is the only affected person in the family, it can be difficult to determine the cause and not that it matters that much to us anyway. However, it will be valuable to know whether Cayla will be able to pass this on to her children in the future. This test takes up to 6 months so will let you know more about that as soon as we have the results back.
Dr Williams also said that because her cerebral palsy is caused by PMG and
that our brains are so complex it might actually get better in the future. A brain can
create new neurological pathways and often finds other ways to make up for the damaged part so who really knows what our brains are fully capable of doing and restoring. I don’t hold my hopes up that Cayla’s spasticity in her leg is going to disappear in the future but that would of course be fantastic.
Though if Cayla’s PMG didn’t also cause spasticity in her leg she wouldn’t have had an MRI or a diagnose so early on. She would be a child with speech delay/difficulty and we would have to pay to take her to private speech pathology sessions and for equipment such as the Vantage Lite, Ipad and so on. She probably wouldn’t be able to go to a mainstream school as she wouldn’t be entitled to have an Education Assistant (EA). All of these things are available to us (free of charge) as Cayla has a diagnose of cerebral palsy.
Dr Williams wasn’t particularly worried about her speech and that both speech and saliva control will definitely improve with training and increased awareness as she gets older. He thought that she looks like a very happy 3-year old presenting age appropriate behaviour without doing a thorough assessment. Therefore no need to see him on a regular basis but we will more than likely see him when Cayla gets further up on the list for Botox at PMH which should happen very soon.
An article about new equipment to help doctors at Princess Margaret Hospital (PMH) to more accurately target the ‘right’ muscles when giving Botox to young children.
Cayla is due for Botox next week but since this is her 3rd time we don’t feel very nervous. We have, in her case, seen the benefits and together with the post Botox programme we follow (serial casting, stretching, strengthening exercises, AFOs) it does wonders for her posture and gait pattern. With the help of some more Government funding Cayla should soon be getting her Botox injections through PMH instead of going private.
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 :)
Cayla is having regular hip surveillance to monitor the developement of her hips. This is done twice a year by the Pediatric Rehabilitation Department at Princess Margaret Hospital (PMH) and monitors the indicators towards progressive hip displacement. Extreme tightness in the groin and hips can often lead to hip dislocation in children with cerebral palsy. It’s a severe problem, with a high risk of deformity and pain, resulting in problems with positioning, sitting, standing and walking.
Last week we met with a very nice physio therapist at PMH who examined Cayla’s movements and flexibility and send us off for an x-ray. The prime radiological measure for hip surveillance is migration percentage and this x-ray was compared to the one she had done six months ago. If I remember right her last x-ray showed a migration of nearly 30% which is quite a lot but great news is that this one showed a migration of 23% so it’s certainly going in the right direction.
The frequency of ongoing hip surveillance is determined by x-rays, GMFCS level and clinical assessment and as Cayla is level 2 her next check-up and x-ray will be in 12 months time instead of six which is great news!
Dr Colin Whitewood is the man who’s doing Cayla’s Botox injections at SJOG hospital in Subiaco. Him among others are talking about the importance of hip surveillance in this very informative short video.
Interestingly this physio therapist checked Cayla’s range on both feet and she was convinced that Cayla doesn’t need any Botox or casting on the right foot at all which is the opposite of what Dr Michael Chan (Lower limb & foot clinic) said a couple of weeks ago… The physio said that Cayla probably resisted a bit when he tried to stretch her foot and that you have to be a bit clever when it comes to kiddies and play with them to get them to relax and so on. Cayla will get some serial casting done on her left foot/calf in a few weeks time when the Botox peaks which is about 4-5 weeks after the injection.