New specialist, new brace

A few months ago we had an assessment with a new specialist. We discovered a spinal surgeon in Sydney that has hands on training in Mehta casting and wanted his option on Evelyne's spine and the possibility of casting in order to postpone surgery.

He informed us that bracing is not very effective in controlling the curve once it's over 40 degrees (as we knew). When he examined her the curve was over 50 degrees in the brace, and so he suggested the best way forward was to try Mehta casting to attempt to get the curve under control.  We decided that over the summer before using Mehta casting that we would have one more attempt at bracing with a new design methodology. 

The new brace has been more uncomfortable and restrictive with numerous complaints from Evelyne when putting it on and more when traveling in the car. It also has a tendency to put holes in her clothing. However after 4 weeks in this new brace, today we had an x-ray. The x-ray showed a curve of only 41 degrees! It is encouraging to see that the brace has reduced the curve, however we will still have to monitor how well she is tolerating the discomfort and watch for any pressure areas. The next few years will be a juggle between wanting treatment to be effective, but making sure it is able to be tolerated by Evelyne.

Brace shirts

Evelyne has had frequent problems with rubbing from her brace. This has significantly worsened in the new higher design, in particular under her arms. Through a couple of my online contacts, I heard of shirts specially made for under casts and braces. There are different types, one brand called 'knit-rite' which make a cast t-shirt (to be worn under a plaster cast), and another 'the Boston T' or 'the Boston Silver T' (made for boston braces). They reduce perspiration, bacteria, are cooler in summer, and can be changed to reduce smelling and itching. 


I tried to find the shirts online and always hit brick walls. The main being that they would not ship to Australia. In a last attempt to find one I posted a request on an online forum for infantile scoliosis. Success! Within a week I had an offer to post some to me from the US and not long after they arrived. The shirts we got sent are the Boston Silver T and are specifically designed for a brace. They even have flaps under the arms to reduce rubbing in that area. They have made a phenomenal difference to Evelyne's comfort levels. She is kept cooler, less sweaty and smelly, and most importantly - no sores under the arms or on her spine!


Here is a picture of her showing off her new singlet.

Magnetic growing rods

There is a new technique being trialled in Melbourne which uses magnetic growing rods. My specialists here in Sydney are also trialling a similar type of system. They have done one surgery at present, with another to be completed soon. This technique may be an option for Evelyne. The benefit is the rods can be extended without 6 monthly surgeries. There is a recent article below on a 7 year old boy who recently had the surgery.

http://www.theage.com.au/victoria/magnetic-attraction-gives-matthew-chance-to-stand-tall-20111023-1memn.html

Holidays

In the recent school holidays we had the opportunity to use a friend's time-share unit for a week. It was wonderful to have a restful family holiday. We do spend quite a bit of time visiting family etc but it is usually related to doctors visits and various clinics.

Samuel loved fishing, going out on a boat, swimming in the pool. Evelyne enjoyed the beach and the pool. It's hard to imagine her being in a cast soon and having to avoid some of these things she loves so much!

Here are some pics.

Reflux and pressure sores

Unfortunately, there are many 'side effects' of having a brace or cast on.

Two we are dealing with daily are reflux and pressure sores.

Both my kids had reflux as babies, Samuel took until he was 4 to grow out of his and wean him off his medication. Evelyne's reflux was not as severe as a baby, and it wasn't until we applied the cast that it became much worse and medication was needed. The tightness of the casts and braces squeeze and put pressure on the tummy and can cause the contents to be pushed back into the oesophagus. It is also uncomfortable to eat big meals and I've heard others with spinal braces as teenagers recommend smaller, more frequent meals. At the moment Evelynes reflux is managed with medication, leaving more time between meals and bed, and avoiding some foods close to bedtime.

Pressure sores are also reasonably common on the bony prominences of the kyphosis of the spine (the hump), and sometimes on the hips where the brace or cast sits. Evelyne has a constant red area on her back which occasionally breaks open and requires something like duoderm to dress it. Fortunately in a brace, you can check it and dress it if needed, in a cast often sores are open and remain untreated. In the picture you can see the gel dressing with a groove in it from the brace digging in! (The red area is a birth mark).

Both these issues can be painful for her, but unfortunately, they are the lesser of the two evils. The treatment of her spine and attempting to manage the progression of her scoliosis is more important at this stage. So for now, we attempt to alleviate the symptoms as best we can.

Birthday Girl

Evelyne turned 3 this week. She is very excited to be a 'big girl' and says "I'm growing up!"  


It was a relatively quiet birthday, with a play date at the indoor playcentre on the actual day and a friend over on the weekend for the 'real cake'. 


Here are some pics...

Mehta Casting

I have been doing more research into different casting techniques in the hope of finding another alternative to try before surgery.

I had heard many times of Mehta casting, which is perfomed by some doctors in the US. However I did not think it was possible to have this technique done in Australia. I have recently found out that there is a doctor who has hands on training in Mehta casting in Australia, and that his hospital has one of the specialised casting tables required. We have booked in to see him in the hope that this style of casting may be an option for Evelyne.

Although we know she will eventually require surgery, we are still hoping that we can hold out longer. You can see a clip about Mehta casting below.

http://youtu.be/zuQE77EGgNU

Mehta Casting

UAB Orthopedic Surgeon Dr. Joseph Khoury explains the process of Mehta casting and how it is used to treat infantile scoliosis.

by uabhealth | 3 years ago | 24,994 views