No More Botox?

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.
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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!
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Botox and Laryngospasm

Today we went to Princess Margaret Hospital (PMH) for Cayla’s 6-montly botox injections in her left leg. Cayla had to fast from 7am and we had to be at the hospital at 10am in the morning. We didn’t get home until just after 5pm… such a long draining day. As much as I don’t really like the doctors injecting botox into my child’s body we do know that it really helps with the spasticity in her calf and hamstring. We have seen a big  improvement in her walking the last few years and I have been told many times that the small amount of botox injected in her leg is nothing to worry about. Usually Cayla is doing pretty well with the general anesthetic and the recovery but not today.. Apparently she had something called laryngospasm just after she had gone down for the general anesthetic, but before they had put the IV (drip needle) in her hand. That’s when the vocal cords suddenly seize up, blocking the flow of air into the lungs.. They had to give her an injection of a muscle relaxant so they could get tubes down her throat and nose with oxygen! Both doctors came out at different times and spoke to me in the recovery room, ensuring me that Cayla was fine and explained what had happened and why she had a nose bleed an a sore throat… We ended up staying in the recovery room over an hour waiting for the ‘ward nurse’ to come and collect us and take us back to the ward where Cayla’s dad was waiting. Cayla recovered fine and we gave her some panodil for her sore throat. She had some toast and apple juice, and after some more testing and removing the IV we were finally discharged to go home.
Of course I did some more research as soon as I got home and apparently Laryngospasm caused by anesthesia can be particularly deadly for children, leading to cardiac arrest within 30–45 seconds.. I’m not sure what to think but can’t help but feeling a bit uneasy about doing this twice a year with the risk of it happening again.. sucks.. We have a post-botox meeting at PMH in about 6-8 weeks time and I will bring a long list of questions regarding this (to me) scary condition and whether we could try the Botox without a general anesthetic (GA) sometime in the future? I know that older kids are having it done without a GA but not sure if Cayla is too young still. Ok, enough of this, I’m having a glass of red wine and then I’m off to bed.
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Duathlon, Botox & Tooth extraction

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!

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Botulinum Again

Today has been a long day and I can’t wait to go to bed! We were up at 5am to get ready and take Cayla to the hospital for her 4th Botox injection. Even though the last time we did this was quick and she recovered well from the light general anaesthetic I felt pretty uneasy about the whole thing… The last six months have gone so quick and it’s a little depressing that it’s time for botox again which also means serial casting in about 4 weeks time. I know that it helps Cayla blah blah blah but I guess that sometimes time catches up on you and everything just feels a bit more difficult and  depressing. I feel sorry for Cayla that she has to go through this twice a year plus all the therapy that we have to do. Though she doesn’t seem to mind and thankfully her therapists are really good plus the therapy we do is more play than hard work. IMG_4368We were quite lucky as she was the only person there for botox so we didn’t have to wait around much at all which is great as Cayla had had no food or drink since the night before. This time Dr Whitewood only did her left calf so will see what effect that will have on her posture and gait in a few weeks. She was still asleep when I got to recovery and cried a little as she was waking up and coughed a fair bit. Her lips were dried from the GA and she seemed pretty bothered. I asked the nurse what it could be and apparently the anaesthetist had to give her an injection in her tongue when she came out of the anaesthetic. Not quite sure why to be honest but will find out. It can feel pretty painful so I can understand why Cayla was upset. After about 20 minutes we were rolled back to the room where her daddy was waiting. She had three pieces of toast and some water and we could go home. Even though it was a quick procedure we were away for nearly  five hours and feeling pretty tired now.
IMG_4370 IMG_4371 IMG_4376 IMG_4379 IMG_4382 IMG_4390 IMG_4402 IMG_4394 IMG_4388I sometimes feel like I am not only a mum but also a personal assistant to Cayla, there are just so much to organise all the time and it never stops. Every time I open my inbox, a letter or answer the phone there are more things to attend to! Who has got time to have a full-time job!? In the afternoon her speech therapist rang to talk about her visit to Cayla’s school on Wednesday and the application to the Language development school and so on. Then I check my emails and have an email from her speechy from Kids Are Kids wanting to know a few things. Also received an email from our physio therapist who was asking if anyone was interested to bring their child to a training session with a specialist physio therapist from America on Thursday morning. Of course we want to take Cayla to this as I am keen to find out what they have to say about her gait, AFOs etc. We have recently started to look into a type of non invasive surgery (SPML) that is currently being preformed by only two doctors in America so I am also keen to ask this specialist about that. I will tell you more about this surgery soon I promise.

I rang a close friend this afternoon and found out that her father-in-law had just died in a motorbike accident.. So incredibly sad and I know too well how quickly life can change, just a phone call and your life is turned into living hell… My deepest condolences to the whole family, I am so so sorry for your loss…

Botox – 3rd time

It’s been over six months since Cayla’s last Botox injection and she is walking more and more up on her toes again. Botox has been very successful for Cayla as she didn’t walk until her first injection of Botox last year in July. I have to admit that I wasn’t overly keen on Botox when I first heard of it but have since then found out a lot more information about it so we now feel comfortable going through with the procedure. But of course I’m hoping that we can avoid these injections (and any operations) in the future with the help of the Elektrodress and lots of stretching and strengthening exercises.

We arrived at the hospital at 7am in the morning and had to wait quite a while before Cayla was admitted. Cayla is not the youngest child having Botox anymore and since they have all been fasting from the evening before it’s more important to get the littlest ones in first. Anyway, Cayla was number four on the list and everything went really well
this time which was great. Cayla fell asleep fine and it took no more than 25 minutes before I was called to the recovery room. I was expecting Cayla to be a bit sad and disoriented but no, she was happily chatting to the nurses and was ready for an icy pole. After a little while she was allowed back to the room to had a bit of toast and yoghurt to eat. Then the nurse checked her heart rate and removed the needle from her arm, we got her dressed and went home. Very quick and easy. This time she was also given a small amount of Botox in her right calf as she has a so-called ‘catch’ in that leg/foot too. This was recommended by a highly regarded doctor called Dr Michael Chan a couple of months ago. He runs the Lower Limb and Foot Clinic and has worked at TCCP for a long time. It will be interesting to see what effect that will have.
Below are some photos from our morning at SJOG hospital and little Cayla is happy and running back to our car after the procedure :)

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The effects of Botox are peaking about 4-6 weeks after the injection and that is when the very important Post Botox Programme will kick in. This programme involves a lot of stretching and strengthening exercises, hence the importance of bike riding and squatting etc. We have recently taught Cayla to walk with a ‘heal-toe’ pattern with her right foot and hopefully we can teach her to do the same with her left foot as well. We will probably also have some serial casting done in a few weeks. It is important to get at least a 5% range for her to even be able to walk in a ‘normal’ way and serial casting is a very effective and cheap way of getting that prolonged stretch. So even though I’m not a big fan off casting it has to be done plus that it really doesn’t bother Cayla at all, only me…

On our way home - I love this little girl so much!

On our way home – I love this little girl so much!

In the afternoon we went to see Nathan’s class Edu Dance Performance at school, they were super cute!

Botox – Article

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.

Back for Botox

Time is flying and it’s been over seven months since Cayla had her first injection of Botox at St John of God Hospital in Subiaco. It was a quite emotional experience since it was the first time Cayla was going under a general anesthetic plus that I wasn’t overly happy about having Botox injected to my child.. You can read more about that here.
This time was a very different story as it was the second time around and we knew what to expect. I’m of course not over the moon about giving Cayla botox, however, I have done some research, spoken to lots of people, and seen the benefits and how much it has helped her with her gait and posture. I’m still waiting for more information from Princess Margaret Hospital (PMH) in regards to the effects on long-term use of Botox which should be an interesting read.

Anyway, Nathan spent the night with the grandparents and at 6.20am we were on the road towards the hospital. It was a sunny day, the traffic was fine and Cayla was watching Tinkerbell, which is her absolute favourite little fairy. When we arrived we bumped in to a friend from TCCP with her hubby and 3-year old daughter which was great and the girls even shared a room. Botox buddies…. or is that weird..? :)
Both Mike and I were a lot more relaxed this time and everything just went really well. The staff were all nice and accommodating and Cayla was the first one on the list so not too much waiting either. When it was time to go to the theatre I went with Cayla and Mike went to the cafe downstairs to get some coffees. Cayla fell asleep just fine and I left the theatre without crying this time…….. I had a quick coffee and then off to the recovery to hold her when she was waking up. She cried a little bit but was given an icy pole which worked a treat :) She was just really cross having a bandage on her arm and wanted us to remove it immediately! :)
Back at the room, cuddles with daddy, toast and yoghurt for breakfast and cartoon on TV brought her around to her normal self in no time. The nurse checked her temperature, puls etc and removed the drip and bandage from her arm. After that we said good bye to nurses, our friends, and left the building to go home for this time. The Botox will last about 4-6 months but I’m still hoping and keeping my finger’s cross that the Elektrodress will avoid more injections or at least prolong it.. Only time will tell..
The Botox is working really well on Cayla and after about 48 hours her foot comes down flat on the floor and she can walk a lot better. Dr Whitewood decided that she didn’t need Botox in her right calf muscle so I’m guessing that we are not doing serial casting on that foot or removing the top part of her right AFO at this stage? Will have to speak to Cayla’s physio Megan about that soon.

You can read more about Botox and the benefits it has here. The next couple of months we will follow a post Botox program which includes casting, lots of stretching and strengthening exercises as well as getting new AFOs (and the Elektrodress). Cayla is still the only one in Australia (as far as I know) that is currently using this method Elektrodress). However several people have asked me about it at TCCP lately so hopefully more parents can be trained and more kids with cerebral palsy can benefit from the Inervention Method in the future.

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Time for Botox

Today is the 4th of July and I was just not looking forward to this procedure at all.. I know that it will help Cayla but I was really worried about the general anesthetic. She is so little.. what if something went wrong and she never woke up again… But of course I didn’t have to worry, everything went really well today and the procedure only took about 40 minutes so it was a very light sedation. Cayla was happily chatting to everyone before it was time for her to go to sleep and I was feeling pretty good too. But when they put the mask over her face she started crying and I tried to comfort her the best I could by stroking her head and talking to her but she slowly cried her way to sleep.. I left the theatre in tears and went to the cafe where Mike was waiting with a big yummy latte for me. I felt so emotional and teary but just as I had finished my coffee they rang from the upstairs and told us that Cayla was waking up in recovery. She was a bit disoriented and upset when I got there so I sat down on the bed with her tightly in my arms. My beautiful precious little Cayla, I was just so happy that she was awake and nothing had gone wrong.. Silly when I think about other parents that go through far worse operations and procedures than a small injection of Botox…

We made a quick stop at Big W on the way home and bought Cayla a cute litte toy dog for being such a brave girl. As soon as we got home she was 100% back to normal and played happily with her toys. :)

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Botulinum toxin type A – Botox

Some information about and why it’s so beneficial for kids with cerebral palsy.

www.cerebralpalsysource.com
When most people hear the term botox, they automatically assume that the impending use will be for some celebrities wrinkled, aging face and their last stab at beauty. However, few are aware of a more important use for botox, and the connection between botox and cerebral palsy.

Botulinum toxin type A, or botox, is a therapeutic muscle-relaxing agent that reduces the rigidity of muscles or unwanted spasms in a specific muscle. Botox is produced from the bacteria that causes food poisoning and provides relief for muscle stiffness at the site of injection.

When prepared for therapeutic use, botox is injected in small amounts into the spastic or stiff muscles. It begins to take effect by blocking transmission between the nerves and the affected muscles. The injection stops the signal between the nerve and the muscle, relaxing the muscle and reducing stiffness. Botox only affects the muscles that are injected and once the muscles are relaxed, therapists are able to stretch the muscles and stimulate normal growth.

There are several benefits associated with botox and cerebral palsy. Botox injections can offer many benefits including ease in stretching, improvement in child’s range of motion, tolerance to wearing braces and developmental improvements in crawling, standing, or gait changes.

Researchers have found that with botox and cerebral palsy, children under the age of six respond best to this type of cerebral palsy treatment, especially effective in children who have not developed fixed joint contractures. It is most effective when used in the early stages of spasticity while the child’s bones are still developing and before problems with bone development and deformity set in.