Jesse has a complex range of conditions. He was formally diagnosed as having Autistic Spectrum Disorder this year. Despite his range of condition, Jesse has in the past fallen through the gaps in criteria for service. This diagnosis now makes him eligible to receive specialist services. This has improved his school performance and his behaviour has settled with some increasing maturity and mood management.

Jesse's mild spinal condition was monitored from the time he started receiving services for cerebral palsy. Jesse has a mild right side hemiplegia and overall hypoplastic muscle tone. He has a left thoracotomy scar from closed heart surgery and had two major open heart repairs causing scar tissue internally. His right leg is 2 cm shorter with a foot deformity that has also contributed to his spinal condition.

On top of his neuromuscular condition, Jesse has a genetic history of scoliosis with both paternal grandmother, grandfather, their daughter and his 3 cousins all have varying degrees of scoliosis. His 16 year old cousin had a posterior spinal fusion last November and she is doing great.

Jesse's spinal condition worsened rapidly at the onset of puberty. His orthopaedic specialist referred him to the scoliosis clinic and his curve was measured at 38 degrees ( T3-T10). He has a right side kyphosis and schuerman's disease in his lumbar spine. As he was only 11, it was decided to wait 6 months and xray again. He had had a very difficult year with autistic, aggressive and destructive behaviours and had a not good history of wearing a foot brace, so we considered bracing not an option. As he is a ward of the state all parties needed to conference to decide the best options for treatment of his condition.

From the time we noticed his curve and when financially able, we had chiropractic health care to manage his pain levels and improve his spinal health. Chiropractic care is considered an alternative health care and we were unable to get State support for this which limited what we could do for him. It took some trial and error to find a chiropractor that Jesse trusted enough to even lie down on a table. We took him to a clinic that practiced spinal analysis but Jesse did not trust enough to benefit. When he was in considerable pain one day I found an after hours chiropractor that Jesse trusted and he was wonderful in improving Jesse comfort levels. Unfortunately after 6 months he sold his business in order to work closer to home and the new person that bought the business Jesse took an instant dislike to. Meanwhile his increasing back pain led to a threatened suicide attempt with a knife. I immediately bought his spinal appointment forward 8 weeks. His curve had progressed to 55 degrees taking everybody by surprise.

One month later Jesse was fitted for his brace. This was very scary for Jesse and the first attempt did not succeed nor do I felt I managed this situation well. Jesse had to have a plaster cast mold and to do this he had to lie on a table that looked to me like a torture table. I do wish we had seen this in an educational setting prior to the procedure. We walked into the plaster theatre room with lots people kitted up in aprons and gloves standing around a table with the narrowest strip of tape the Jesse had to lie on. Jesse took one look at all the people and the table and had a major meltdown. In the past I have always managed to calm him down but not this time. I tried to insist he comply, making the situation worse. (One very stressed, sad and overwhelmed mum).

Fortunately the liaison technician cleared the room of all but large and friendly male tech and they both took the time to talk Jesse through the process. The male tech let Jesse make a hand imprint with the plaster letting him feel the temperature and texture. This helped to developed some trust and both the workers managed to get Jesse up to have a practise run at lying on the table. The next appointment threatened to be as difficult as the first but as we turned into the car park Jesse turned to me and said *%#$ I'll do it! And do it he did. I was so relieved and Jesse was very pleased with himself for overcoming his fear. The xray taken with the mold showed a remarkable improvement in his spinal curve. Jesse chose to have his brace in a demin design.

He was very excited about the prospect of wearing his brace and was quite impatient for it to be made. He was expected to wear his brace for 23 hours a day from the beginning. This proved a problem in the first 2 hours.. Jesse sweats profusely because of his heart condition. His body temperature is often 2 points lower than the norm. He feels cool and clammy making the wearing of his brace in the Australian summer very uncomfortable. He often came out of school with his short dripping wet from the perspiration that dripped off him. He became easily dehydrated and has just found to have had cystitis possibly from not drinking enough fluid (and he drinks heaps!!) He has had trouble with rashes that come and go. This led to considerable battle to do the time that has been recommended.

Jesse's autistic spectrum behaviours have further complicated his compliance to wear his brace. He is tactile defensive and the close constraint disturbs him though he can forget about it at times and it becomes a constant that supports his back. He will put it on at times in order to gain a reward or if he needs support and a break from the pain. He is non-compliant because of his itchiness, increased breathlessness and reflux. If he chooses not to wear it he loses some privileges creating meltdowns. We catch him being good by rewarding him when he keeps it on. It's soooooo hard to educate him about the long term gains when the immediate physical discomfort is the experience he is having.

Jesse is being scheduled for anterior and posterior spinal fusion later this year. His cardiologist feels his cardiac health will not be problematic and has recommended the surgery happen in the next 2 months. All members of Jesse's care team have been communicating and on the 15th August we meet again to complete the legal procedure and get a date for surgery. The doctor are deciding which hospital and surgeon will be best for Jesse. His behavioural issues are better managed at the children's hospital but the spinal surgeon prefers to work in the adult hospital so he may be transfer post op to the children's hospital.

I'm apprehensive about the surgery and at times struggle with grief about all that Jesse as an individual and we are as family has had to endure. I do hope this surgery is uncomplicated for all concerned. My ex husband has a controlled mental illness and a traumatic brain injury and has been unemployed for many years. I have had to resign from my position because of Jesse suspensions from school because of his autistic meltdowns. Now that his behavior has improved, I'm unable to commit myself to further work until Jesse surgery and recovery has happened. We have had a difficult time and I'm very grateful for the support I have received from people I have met along the path. However the strongest feeling I have is love for my precious son and being very proud of how he has overcome the many hurdles in his life.

Thanks for reading some of our story.
Punya

You can find Punya on the SpineKIDS Message Boards.