Tuesday, 28 June 2011

Perspective from a 20 year old

A young woman with Beals Syndrome recently posted the below on an online Beals Support Network.  I asked her if I could re-post it here for those interested in what it has been like for her living with Beals Syndrome.

I'm 20 years old and have a mild form of Beals. Although it is mild, it still hurts (I'm a visual artist and I'm always using my hands) and I have to deal with people commenting on my appearance, usually describing my features as "weird" or just "ew." 

I wanted to say something to all the parents of kids with Beals. Kids with Beals need to build a tough shell, because other kids can be cruel as hell, and if they let it get to them, it'll ruin their life. I had to realize on my own that my "weird" appearance was the one I was always going to have- and I would have to come to love it. 

Please tell your kids to stay strong, and pity the people who are rude to them. Instead of feeling hurt by others comments, tell them to look at how sad it is that they would want to hurt someone's feelings in the first place. I grew up fast (most of us with Beals do, at least physically) and am thankful for all the struggles I had to deal with early on, because I would not be able to move forward and achieve the things I have accomplished today without going through it all. 

If you have a teenager, or even a younger kid, and they need someone to talk to, please feel free to message me. Actually, I encourage you to. It's a very lonely feeling knowing you suffer from something that most people don't even know exists- let alone other kids. 

Today I am a happy and successful young woman (so far...) and the fact I have Beals has not slowed me down. It has done the very opposite... it has motivated me to do everything I want to do in life, and all those stupid comments from other kids officially have no validity whatsoever.

Keep strong, and carry on.  Lily

Thursday, 23 June 2011

Casting for a new brace

Evelyne was casted for her new brace yesterday.  It was our third casting without a general anaesthetic.  I took the camera in this time as it's been hard to explain exactly how it all happens. 

She was amazing! She was clearly not very keen, but stayed still and whimpered only when the plaster first went on.  I was very proud of her! Sam sang songs to her while it was happening, and watched with interest. I should have taken a photo of him too!

Getting ready with a stocking type covering against her skin
Strapping her on the bed
My mum calls the 'bed' a 'rack'

Applying the plaster bandages

 Waiting for the plaster to dry
Cutting the plaster off

We will pick up the new brace next week. She picked pink butterflies! It will be a lot higher than her last brace and therefore more restrictive. We are hoping and praying she will tolerate it and also that it may be effective in holding off operating for a bit longer.

Friday, 10 June 2011

Spinal Conference

Last week we got an amazing opportunity. A spinal conference was conducted at Westmead with specialist surgeons from Australia and overseas. My doctor had originally informed us he would show Evelyne's x-rays to them to get their feedback on future treatment. Last week I got an email requesting that Evelyne come to be presented!

It was a strange day.  I was so excited and nervous about what would happen.  I had no idea what to expect. My only information was that she would be 'presented in a lecture theatre'. I was excited that we got the oppotunity to be assessed by overseas specialists, yet nervous about how they would treat her.

We arrived along with 4 other children and their parents and were led into a room next to the lecture theatre.  We were told that one by one we would be called for to be 'presented'.  While we waited (approx 2 hrs) we were supplied with catered food and drink and got the chance to relax and chat.  One parent commented on how well we were being treated.  Another stated "That's because we're the entertainment!"  My doctor was also being especially nice. Were they helping us? Or were we helping them learn?  

It was a bit of both I think.  When Evelyne was presented, information about Beals Syndrome was also presented.  It was clear that some may not have been that familiar with this disorder. She was laid on a bed at the front of the conference (approx 40-50 people) and given a teddy to hold. While the majority of the conference stayed in their seats making notes, 4 doctors came forward to examine her.  I was impressed with how well they treated her and how well she behaved. One in particular knelt down and talked to her and showed her his funny cartoon tie.

After only 5-10 minutes being assessed, we were asked to leave so the doctors could discuss her case.  Last night I finally got a phone call from the doctor with feedback (the special treatment only lasted as long as the conference!).

The news however is more promising than our last assessment.  The specialists (I think from the U.S) suggested an alternate brace design.  They advised that with higher support, possibly over her shoulders, we might get slightly more time before needing to operate.  We are hopeful that this might be the case!

She loves the bear!

Stethoscope image: jscreationzs / FreeDigitalPhotos.net

Wednesday, 1 June 2011

Casts and Braces

I'm by no means an expert in this area.
All I know is what I've experienced and a few snippits I've learnt recently from my Beals connections. The braces and casts vary depending on the height of the curve and the specialist team.  Some examples of braces and casts I've seen recently:

In infantile scoliosis a cast or brace is used to control the curve.  In some cases of infantile scoliosis, the curve can be improved.  One of my new 'facebook friends' has a son in this situation.  Her son does not have Beals Syndrome, but was born with infantile scoliosis.  He is responding well to casting.  See his progress here

Unfortunately, in Beals Syndrome, the curve tends to continue to develop regardless. 
As you can see from Evelynes x-rays in my post on scoliosis.
Casting or bracing can still be used however in an attempt to slow down the progress of the curve.  I've learned recently that a plaster cast tends to get better results than a brace.

As you may imagine, casts in babies or toddlers can be difficult.  
They can be hot, heavy, and uncomfortable. They make fitting clothes difficult. 
If they're not walking yet it is difficult to hold them and carry them around. 
Casts can't be removed, so no baths.  
It's also important to try and keep them clean and dry. 
Fun with a toddler!

Some ways I managed were:

  • Gorgeous, large, waterproof bibs made by my mum
  • Still allowing some 'controlled' waterplay with a smock
  • Antiseptic powder for those nappy explosions
  • Smaller nappies, changed more frequently to fit under the cast
  • Larger, elasticised clothing such as leggings
  • Clothes with higher necklines
  • Unfortunately avoiding things like sandpits and the beach
  • A portable air conditioner in her room in summer
  • A lightweight pram in the boot at all times.  Other mums I know have used slings or backpacks.

The last picture is of course what not to do!!