When I was around 12, all of the children in our class had their spines checked by a school nurse. I was the unlucky one to come home with a note for my mother telling her there was a problem. After a visit to the orthopaedic surgeon, scoliosis was confirmed. His advice was simple.....do nothing. In his words, "we could give her some exercises to do but she probably wouldn't do them anyway". My curve did get progressively worse until I stopped growing which fortunately for me wasn't very far (I'm only 5ft). It's classed as a "moderate" left thoracolumbar curve. I don't recall ever being told the degree. I've had my fair share of discomfort over the years but right now I'm mostly pain free with a few backaches here and there. I share this with you because in the back of my mind there's always been this worry that I would pass this on to my children and for this reason I have probably been more observant than most when it comes to my daughters spines.
Not long after Leah's 6th birthday she was standing in front of me for some reason, I can't recall what she was doing now, but for just a moment she bent over and I caught a glimpse of what I hoped was not a raised ribcage. After having a better look, my fears were confirmed and I did see that her right ribcage was raised more than the left. It was only minor, but it was there. She was only 6 for heavens sake, surely she wouldn't have scoliosis so young I was hoping to myself. My sister who is a remedial therapist did nothing to dispel my fears. After examining Leah she advised me to go to our GP and have her examined further. The GP thought it was only mild, it seemed to straighten out when she bent over, so it wasn't something to be concerned about at this stage. He suggested we check it again in 12 months. I am mad at myself now for not being more insistent that he give us a referral but you live and learn I guess.
It was probably only 6 months later, that at one of the times I asked Leah to let me check her back that I noticed that the ribcage was noticeably bigger. Now I was getting really worried. It was quite a big change in such a short time. Again on the advice of my sister, who at this point had advised she definitely has scoliosis, I took her to a new GP who gave us a referral without hesitation.
We were given a few choices for which orthopaedic surgeon to see and basically took the first one that we could get in to which was a few weeks away. During that time the GP had given us referrals for xrays to take with us at our first appointment. This was to be the start of many, many xrays to come. When Leah was having her first xray taken, standing tall, trying to not to laugh (she gets like that when she's excited), I was standing behind the glass barrier, waiting. While the radiologist checked the xray, I poked my head around the corner to see if I could see the image on the screen. My jaw dropped when I saw what I hoped was someone elses spine and not Leah's on the screen. There was a definite curve, probably more than mine was at 12 years old. My heart sank, just from looking at her I had no idea that the curve was that bad.
Our first appointment with the orthopaedic surgeon was pretty much what we expected, yes she had a significant scoliosis and due to her age, needed treatment immediately. He did all the usual measurements, asked the usual medial history. Other than Leah having to wear glasses full time due to accomodative eostropia (one eye turns in), she has had no other issues. She is very short for her age with shorter than normal limbs which he also mentioned, but that is purely genetics (gets that from Craig's mother). We found out at this appointment that her curve is at 28 degrees with associated hypokyphosis. His suggestions were that he transfer her records to the Royal Children's Hospital so as to go through the public system as we didn't have private insurance. He gave me a referral for Leah to be fitted with a Milwaukee Brace, told me to make an appointment straight away to have that made and then back to Royal Children's for follow ups. In the back of my mind I had an idea that he was going to suggest a brace, so I was prepared for that, what I wasn't prepared for was the type of brace he was recommending. I had no idea what a Milwaukee brace was, so accepted his recommendations, went home and investigated.
The Milwaukee brace looked like some kind of torture device that should belong back in the dark ages - not on my tiny 6 year old daughter. The more I read about this brace the more depressed I became. I was in tears for days thinking that this brace was in my daughters future. She was already different than the other kids, being very short with glasses, she definitely stood out in her school. Of course I had family and friends telling me that with her personality, she'll be okay, and they were right but that didn't make the reality any easier. Leah has dealt with every obstacle that has crossed her path with the maturity of someone much older than 6. From having to wear glasses, the brace, her mouth appliances (which I will get to later), each time with a smile on her face and the attitude of "you've just got to do what you've gotta do - sometimes I don't like it, but I just deal with it". She really is an amazing child and has made this whole process so much easier with her positive outlook. She's certainly taught me a thing or two.
Anyway, after deciding that there has got to be a better alternative, I searched for hours, days, weeks, finally coming across the SpineCor brace. There was the information on their website of course which I read, then searched pubmed articles etc. etc. I found scoliosis forums that talked about a range of treatment options and found personal experiences using the SpineCor brace - some positive, some negative. What I did find encouraging was that the children in my daughters age group seemed to do very well with the brace. This brace was certainly the most appealing to me being that she could still move freely, using her back muscles as they should be used, which made far more sense to me than putting her in a brace that restricted movement of her back. There was a big dilemma though in choosing this brace. While this brace is used widely overseas it is yet to be well recognised in Australia. Choosing this brace meant we would need to go to Sydney to not only fit the brace but then every 3 or so months to check the brace. We are a single income family so this was a huge decision for us to make. The brace would need to be paid for by us (no private insurance), plus the regular flights to Sydney on top of that. In the end it came down to what we felt was best for Leah, we'd find a way to make it work if the SpineCor brace was what we chose. I spoke to the orthotist in Sydney who fits the brace, I spoke with Royal Children's Hospital in Melbourne who were trialling the brace. I then sent an email to Dr Rivard, the creator of the brace, along with photo's of Leah, just to get his take on her situation as well. All who I spoke to had said that Leah was an ideal candidate for the brace, with her age and curve. Of course that alone couldn't be the determining factor, in the end I had to go with my gut and choose what I felt was the best option as her mother.
We decided to go with the SpineCor brace first. If it worked....terrific, if it didn't we could always change her treatment later. So the wheels were put in motion to head down to Sydney to get the brace. I had decided not to go back to the original orthopaedic surgeon and was advised to see Geoff Askin, one of the leading paediatric orthopaedic surgeons. We sent Leah's xrays to him, in turn he sent them on to the Mater Children's Hospital to wait for an appointment. Having dealt with hospitals before I assumed this would be a substantial wait, so we decided to go ahead and get the brace first and deal with the doctors later. Getting the brace first I decided was a better option anyway, that way I didn't have to deal with specialists telling me to go with a rigid brace, we already had started treatment.
As a family we all flew down to Sydney for the first visit and made it a mini holiday. Leah found it a little uncomfortable for the first day when we were walking around a lot. She looked like a little cowgirl who just got off her horse with the way she was walking. There were no tears though, she was a little trooper. Going to the toilet was a new thing for us to deal with. Having to undo crotch straps and snaps, it was a lot of fiddling around. Fortunately for us we got the brace at the beginning of school holidays so she had 6 weeks to get used to it before dealing with it at school. In those 6 weeks she learned to go to the toilet herself. I ended up finding some shirts for her to wear under the brace instead of the bodysuit and sewed snaps in to underwear which made it easier for her. All in all, the brace took a little bit of getting used to but in no time she was going about her daily life like she wasn't wearing it at all.
Six weeks after having the brace fitted, Craig and Leah took the trip down to Sydney again for a follow up check. We had decided that this would be a regular thing for Craig and Leah to do....I don't like flying and it gave Craig and Leah a day out together. I had taped a message for Stuart (the orthotist) about concerns I was having about the brace and Craig taped Stuart showing me any changes that he made. Leah had an in brace xray to check where the brace was holding her. We were all blown away when the measurement went from 28 degrees out of the brace, to 13 degrees in the brace. I felt like a huge weight had been lifted from my shoulders that I had made the right choice about her treatment. A couple of weeks later we had our first appointment at the Mater. They agreed that they would have treated her with a brace, probably the Boston. They couldn't deny however that the SpineCor brace seemed to be working very well and were happy to let us follow this treatment path.
Three months later and back down to Sydney again. Another set of xrays showing us that the brace was now holding her at 7 degrees. A month later, back to the Mater where we were in and out in 5 minutes...they saw the xray and were pleased that the curve was even lower. We head back to Sydney again on July 11th, no xray this time, just to check tensions etc. of the brace. Then back to both Sydney and Mater around October with xrays which I'm confident will show that she's still holding well, if not even lower.
The brace although the most important part of her treatment, is not the only part. At the beginning of wearing the brace we took her for a few visits with an osteopath. I like to keep an open mind with these type of things, but after watching the osteopath do what looked like just putting her hands under Leah's back and leave them there...I don't know if it really helped her or not but you never know. I also took her for a couple of visits with a chiropractor and kinesiologist....again I don't know if they helped her at all, but I had the mindset of, what if these things really do work, and I didn't do them. We added some yoga for kids at home which the girls had fun with but at their age was probably not very beneficial, they weren't really doing the poses properly. Leah was already in dance classes so we continued with the ballet, jazz, tap (she wears the brace while dancing), she was also already in swimming lessons, so have continued that as well.
I am fortunate enough to have worked with a dentist over the years who has treated many children with facial growth 'abnormalities' (for lack of a better word) for around 15 or so years. I've seen many children go through their treatment from start to finish with excellent results. When Leah turned 6 he suggested that we make her an appliance due to Leah having a 'crossbite'. Leah wore the appliance for a few months, widening the arch by turning with a key each night. Once the appliance was widened as far as it could go, we left her without for a while until more permanent teeth came through. After attending a weekend conference a month or so ago about orthotropics and biobloc treatment (which is what the appliances are called), I was contacted by him telling me we need to get back in to the appliances and talked to me about the connection between Leah's facial growth and her scoliosis.
At the appointment he showed me the asymmetries of Leah's face. One cheekbone was higher than the other, her chin was off to her right. I have to admit that I had never even noticed that before, but when I was standing behind her head looking down, it was as plain as day. He explained how where the spine connects to the skull is rotated. That rotation causes the connecting muscles to pull the cranial bones causing the asymmetry. On top of that Leah usually slept on her side or stomach, adding more pressure to the bones pushing them further. We needed to start widening her top arch again even further in an effort to 'unravel', then there will be more appliances designed to bring her jaw forward all with a goal towards balancing her structure. In doing this while we are sorting out her spine at the same time, he feels is going to give her the best chance of actually maintaining the correction we get from the brace. I'm sure I'm not accurately relaying all that he was saying, with all the information going in, I don't retain everything, but I have to say that it certainly made a lot of sense to me. Your skull is attached to your spine after all, of course it's all connected. It would make sense that if you're trying to untwist your spine but where your spine connects is all out of whack then it's going to encourage the spine to twist with it wouldn't you think. Anyway, we've started her with the appliances which she's been wearing for about a month now and already the change is noticeable. Her cheek bones are almost the same level, I don't know how it all works....I just know that it does. A major part of the success of this treatment is to have her sleeping on her back though, which has been quite a challenge. I am happy to say however that we seem to have won that battle. I ended up using an old sheet, sewing a strap on to it and basically strapping her in at night so she couldn't turn. A few nights I found her turned on her side when she was determined to do so, so I tightened the strap. For the last 2 weeks she's been constantly on her back and hasn't turned once...woo hoo! We'll leave the strap for a little while longer while she develops the habit and then she should be fine.
One of the other obstacles for Leah for not only the dental part of her treatment but for her overall health is that she is a chronic mouth breather. She had a couple of bouts of tonsillitis over the years which we were able to control by her diet. Simply by taking her off wheat/gluten, caused her tonsils to decrease in size slightly and eliminate the tonsillitis. Unfortunately it didn't decrease the size enough and we ended up having a consultation with an ENT specialist under the dentists referral. The specialist agreed that the tonsils/adenoids were very enlarged and impacted on her breathing ability. He also agreed that in order for us to have success she needed to be able to breath through her nose and and at this stage that would be difficult for her to do. So on July 14th we're booked in to have the tonsils/adenoids removed. Something that none of us are looking forward to but will hopefully make a big difference in Leah's life. Yet another obstacle for Leah to overcome but she's ready to take it on with that same positive attitude she's always had.
So that's a recap of the last 12 months which leads us to where we are now. Leah is now 7 years old, has been in the brace for around 6 months and is currently holding at 7 degrees down from 28, she's been wearing the biobloc appliance for the last month, she's doing dancing, swimming and is simply enjoying life. I know that we're in the early stages of what is a very long process, but I feel confident that we're on the right path. I hope that at the end of it all that this blog turns out to be a story of how we succeeded. I will keep updating as the story evolves.
