Brayden's Story - Morphea

brayden2007.jpgThe Story of Brayden

Picture: Brayden and his Mum, Carolyn

I have a six year old son with morphea on the left-hand side of his face.  It started as an oval shaped patch under his left eye which was noticeable when he was 3yrs old.  My husband and I were told by the GP that this patch of skin simply didn’t have any pigment and not to worry about it.  When Brayden was 4yrs old the oval patch started going brown so we immediately took him to a different GP who referred us to a dermatologist.  In the month it took for our appointment to come around, he had developed small brown odd shaped spots from behind his left ear, along his jaw bone and under his chin.  He also had a couple of tiny oval spots on his chin which were quite red around the outside.  The dermatologist diagnosed it as morphea and provided some steroid cream to put on the existing patches and on new patches as they appeared.  We were told there was no other suitable treatment.

 

 

We saw a different dermatologist for a second opinion and were told there was an aggressive treatment of steroids and methotrexate, but the drugs given were similar to those given to cancer patients and they damaged the liver amongst other things.  Scary!!  Obviously I wasn’t prepared to sit around and watch this disease spread over my young child’s face without doing anything, so then the searching for answers began….  I have never googled so much in my life!!  I found a lot of information on the internet and a lot of helpful scleroderma support websites, this being one of them.   June Meyer was my first point of contact and she provided (and continues to provide) information and support, which was very comforting.

I found a hospital in Adelaide which was doing clinical trials and studies on scleroderma, so I sent them a photo of Brayden and gave them his history.  They passed this on to a Paediatric Rheumatologist in Adelaide, Dr Christina Boros, who had extensive involvement in the treatment of morphea.  She was adamant that the treatment of steroids and methotrexate does actually work and that morphea is an aggressive disease which needs to be counteracted with aggressive treatment.  We were even considering flying to Adelaide each month so she could treat Brayden….. but went back to searching for someone closer to home.  Eventually, (after much more googling!!), we found an immunologist in Brisbane and advised him of Brayden’s condition, thinking he may be able to help.  He told us there was a new Paediatric Rheumatologist, Dr Navid Adib, who had just started at the Wesley Hospital in Brisbane and that we should get in touch with him. 

During our first appointment with Dr. Adib he advised that the best treatment option was a course of intravenous steroids once a month for six months in addition to methotrexate tablets weekly for approx. 3 years.  He put our minds at rest when he told us he would monitor Brayden’s liver closely through blood tests and that children’s bodies bounce back really well from these types of treatments. 

Within a month of starting his treatment, Brayden’s morphea had stopped spreading which was an absolute relief!!!  He has finished his steroid treatments and is just taking his methotrexate once a week.  We see Dr. Adib every couple of months for a check-up and for blood test results.  At this stage the plaques on Brayden’s face seem to have softened and Dr. Adib doesn’t believe they’re active now.  There is no sign of muscle or bone damage at this stage, however we have recently come across a new problem… 

On our last trip to the dentist we discovered Brayden has defects in the enamel of his molars, which is apparently not related to the morphea or the medication, but it lead us to having an x-ray taken.  This showed that eight of his adult teeth have not formed at all.  I keep in touch with a lady in England who I met through the American scleroderma website (www.sclero.org) and her young son also has morphea on the left-hand side of his face.  She also told me that many of her son’s adult teeth have not formed any roots.  Surely not coincidence??  So now the searching for answers begins again……….

 

 

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Please note: The new phone number for the Scleroderma Association of Queensland is 07 32773460. Our postal has changed too; it is PO Box 316, SALISBURY Qld. 4107. The new physical address of our office is 124A Evans Road Salisbury. If you would like to come and browse through some books in our library or have a chat or help, please visit on Wednesday between 9:30 and 12 midday.