Sunday, January 5, 2014

Our Serial Casting Experience So far...

As I mentioned in my last blog post, it was recommended that we try Serial Casting with Joshua to correct a deformity of his foot being caused by a short calf muscle.
His foot was really bothering me as it was very swollen compared to the other foot and his feet were constantly blistering due to friction in normal shoes, and he was also not tolerating AFOs.  At least, not the poorly made AFOs we've been forced to deal with lately :(

This is a photo I took of his feet.

They are very dirty as I took this after he had been outside!  You can see his right foot  (the left on this picture) is quite a bit larger than the other side due to the swelling.  His left foot has a blister visible, and his feet are extremely flat with no arch.  
When Joshua walked, he was walking with his foot on the inside edge of his right foot, and he was not getting his heel down to the floor when walking.  He was also experiencing internal rotation from the knee, where the leg from the knee down sort of swings out and then inwards as he took a step.  Despite this, Joshua was able to walk and run and play, but it compromised his stability, causing him to fall frequently and hindering his ability to negotiate uneven surfaces as well as other children do.  We hoped that doing serial casting would help correct these problems and give him a more normal gait pattern and help him walk better.

Here is a video of Joshua walking, taken earlier this year.

So, what is serial casting?  It is when they apply a series of casts, replacing each one every week or so, to gradually alter the position of the leg, stretching out tight muscles and in our case, repositioning Joshua's foot, trying to help create an arch.  

The first cast we applied was a soft cast, and it was applied on a Monday and changed on the Friday.  We did it for a shorter time the first time because we were concerned about how Joshua's skin would hold up under the cast.  The cast is not allowed to get wet, and you also need to avoid things like sand, because if sand gets into the cast then it would be very abrasive against the skin.  Keeping it clean and dry was the biggest challenge in doing the casting because Joshua is quite an active boy and loves water and sand, especially when he goes to day care for 2 days a week.  In order to help keep it clean, when he went to day care, I used one of Rod's big football socks and put it over the top and up his leg a bit above the cast to keep any dirt out.  I called it my "insurance layer".   Of course, I asked the day care staff to keep him out of water and sand, but I know what Joshua is like and it would only take 2 seconds for them to look away and give their attention to another child and he would be off into that sand pit.  The sock seemed to work well, because we didn't end up with sand in any of his casts.  Thank goodness.  He also cried to go in the bath with Amelie at night, which wasn't possible, so that was a little tough too, but worth the battle if the casting would give us a good outcome.  I bought some waterproof cast covers so he could have showers occasionally, but mostly I just tried to wipe him clean.  I didn't really trust the cast covers as a few times water seemed to get into them.

His first cast was blue and very bulky.

It didn't really slow him down though, he was still just as much into mischief as ever!

During the day time, Joshua was happy and playing as normal but we did have some hard nights where he would scream and cry.  It is very hard when your child is unable to communicate very well, because you don't know if they are in pain, or just annoyed by it, or what is really the problem.  I was a bit concerned it could have been damaging the skin underneath.  When it was removed, it was a little damp, but his skin was ok.  In order to help with the dampness, the physio decided to try a different lining material on the next one, that would hopefully absorb sweat better and stop his skin becoming so damp.  Again, it was a soft cast.  This is the preferred method of casting for young children as the parent is able to remove the cast themselves.  It dries stiff, but it can be peeled off similar to a bandage, without any special tools, so if the parent becomes worried for any reason, it can be removed at home.

Joshua showing off his second cast, this time a red one!

Joshua seemed to tolerate this second cast a lot better, the screaming at night was reduced.  On Thursday night, the night before it was due to be changed, I decided to remove it myself.  There was nothing happening to overly concern me, but I just sort of felt a bit bad for him and thought I'd take it off and let him have a nice bath etc before getting the new one put on the next day.   As I peeled it off, it became apparent that the inners layers were very damp.  Very damp.  Once I got it all off, I gasped when I saw his foot.  It looked like a huge blister, but on closer inspection it was really just damp skin starting to break down.

Damp skin on the bottom of Joshua's foot after I removed the second cast
Side view, showing some damage to the heel as well
This was quite horrifying, and I didn't know if they'd be able to proceed with the casting with this damage to his skin.  I was very glad that I had decided to remove the cast even though there had been no outward concerns which prompted me to do so.  Thankfully, it dried out quite well overnight and looked a lot better by the morning.

The next morning, the whiteness was gone and it just looked a bit dry and flaky.  
We decided that we needed to try a different type of cast, because the moisture collecting in the soft casts was too much.  It isn't helped at all by the fact that it is the hottest and most humid time of year here I'm sure.  So the Physio suggested that we do a plaster of paris cast, with a hard fiberglass outside layer.  Plaster of paris is more absorbent, so should keep the moisture away from his skin much better.  The downside to this method, is that we'd have to cut the cast off using a cast saw which would be distressing for Joshua, and that I wouldn't be able to remove it myself if I wanted to.  I decided that it was worth proceeding with the plaster of paris because we could already see improvement with Joshua's foot placement.  This time she applied some "comfeel" which is sort of like a protective second skin that sticks on like a bandaid over the areas that had been suffering a little bit of skin damage.

He chose Red again for his Third cast, Plaster of paris with fibreglass.  You can see he had special 'cast shoes' to wear on the cast for walking.
If there was a problem with the plaster of paris cast, I would have to call the Physio, or if it was outside of business hours, take him to Emergency to have it removed.  Thankfully he tolerated it well, and when we went back to remove it, his skin wasn't too bad.  Removing it with the cast saw however, did indeed prove to be very traumatic, and consisted of me having to hold Joshua down for the process while he screamed and screamed himself into a red sweaty ball of fury.  Not pleasant at all, but you know what, he does the same thing when he gets his hair cut (part of the reason why you may often see Joshua with longish scruffy hair...  that and I thought it helped to hide his microcephaly.  Haha!  We have recently cut his hair short though and decided it doesn't look too bad at all...   But yes, he screams.)   So it is sort of just part of life.  

The next cast was an extra special one indeed.  Being just before Christmas, the physio used a bit of creative license and used red and green to make a "candy cane" effect.  LOL

Joshua seemed pleased with his new red and green cast.
Now, the ideal situation after doing casting, is to have a new orthotic (AFO) made, so that the child can go straight from the cast into a new orthotic, to help maintain the gains achieved from the casting.    Aaaand this is where things start to go to hell.   The orthotics department refused to give us an appointment when our Physio called for one, stating that we need a new referral from Joshua's paediatrician.  GAH.  Seriously.  In my opinion a child with Cerebral Palsy should just have an ongoing referral for orthotics.  The paediatrician doesn't really know...  he writes referrals because the Physio tells him to, and the physio confers with the orthotist as to what the child needs.  Its all red tape and very frustrating to me, seeing as Joshua has already had 4 pairs of orthotics, they already know him and know he needs them, but "policy" meant we were unable to get this appointment before Christmas.  So, it was decided that we'd take a break, and resume casting in the new year, when we were able to line it up with new orthotics.  She said we might lose some of the range we gained this time, but hopefully not too much and we'd do a few casts and get him straight into a new AFO.  Sounded reasonable to me, and she also constructed him a splint to wear at night time, out of some padded fibreglass which I was to bandage to his leg to help continue to get that stretch overnight.  

So we left with that plan, and I was extremely happy with the gains Joshua had made from the casting.  His foot placement was SO much better.  When I posted a video of him walking on Facebook, everyone also thought he looked much more upright and just generally much better.  I was so thrilled that the 4 weeks of casting had been so worth it and that Joshua's walking had improved so much.  You can watch that video Here.

Everything was merry and bright, until 2 days later, when Joshua was running around pushing a toy truck along, when he started to scream and then refuse to walk at all.  It was concerning, because Joshua typically has a very high tolerance to pain, even when his orthotics or casts have cause skin damage he has continued to walk and play and act like nothing was wrong, so the fact he was completely refusing to walk really bothered me.  I waited a couple of hours to see if he would improve but he did not.  So I took him to the hospital.  His very first visit to the emergency department in 3.5 years.  (Yes I know, we've had a very good run!!)

For the most part, Joshua was still happy and playing, and crawling around the place.  He just absolutely would not walk.  If you tried to make him, he would just allow his leg to buckle underneath him and fall to the ground.

Crawling around the ED

They did some X-rays of his leg and pelvis and did not see any fractures.  They said he must have just sprained his ankle.  There was an orthopaedic doctor who just happened to be around at the time who also had a quick look at him, and didn't see anything that concerned him.  The ED Doctor said he felt Joshua should be on the mend within about 3 days.  The Orthopaedic Doctor was more generous and said a week and he should be back to normal, but if he wasn't, then bring him back.  So that was fine.  We had ruled out anything being broken and just had to let him recover for a few days. We feel that his ankle was weakened and stretched due to the casting, and therefore more prone to injury.

In the meantime.  Joshua learned to hop instead of walk.  He got around either by crawling, or hopping on his good leg.  After posting this on Facebook, I became aware that this is actually pretty impressive.  Hopping on one leg is considered a 4 year old milestone, and here was my 3.5 year old hopping around.  My 3.5 year old with Cerebral Palsy can hop?!  I think that may be his first and only milestone so far to be achieved on the early side!!!  Haha, there is always a silver lining right?!

Unfortunately, 9 days later, Joshua was still not walking.  I took him back to Emergency.  The doctor thought he should definitely be weight bearing by now.  He also thought his ankle felt a bit warm compared to the other one.  He ordered more X-rays, this time, focussing on his ankle.  He said the previous ones didn't show the ankle in detail.  I wasn't really impressed hearing that, cos maybe it was really broken all that time and we didn't know because they hadn't taken a good view of it.  But, even after the new X-rays were taken there was still no sign of a fracture.  All it showed was some soft tissue swelling consistent with a sprain.  The ED Doctor wanted to have him reviewed by the Orthopaedics team, so was asked to refer him to the fracture clinic.  He said I would get a phone call to arrange the appointment, so off we went again on our merry way.

Fast forward to Day 12 and Joshua is still not walking, and I haven't heard anything from the fracture clinic.  By this time I'm starting to feel quite concerned.  Our usual physio from Early Intervention isn't contactable because they closed over Christmas, so I decide to try and call the hospital physio who did the casting.  She is with a patient when I call, so I left a message to have her call me back.
Later that day, Joshua begins to bear weight again and take very tentative steps.   That physio didn't call me back yet and I didn't hear from the fracture clinic either.  I am beyond frustrated that we have been dealing with this pretty much on our own and that Joshua didn't walk for 12 days.  We are now 14 days after his injury and he isn't back to normal.  He is walking, as you can see here, very cautiously, limping which I am relieved about, but he can't go very fast.  He reverts to crawling if he wants to go fast.

I fear this injury has probably undone all of the gains we saw from the casting, and I feel quite annoyed because I know this injury would have been prevented if he would have had a new AFO to wear once he came out of the cast.  Im annoyed that hospital red tape basically caused the injury, and I'm annoyed that I've pretty much had no help to manage it since.  Ive just continued trying to do his normal exercises that were suggested to do post casting (with minimal success) and I've been using the night splint on the leg as soon as he would tolerate it, But I really have no idea what the correct management is supposed to be now.

I guess the coming weeks will reveal more, but I can tell you that I will not do serial casting again without knowing 100% without a doubt that we will have a new orthotic to go into afterwards!!