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Hi, my name is Noeline. I have four children, two boys and two girls. In the year 2002 my eldest son Taiteariki (a.k.a. Alex) was diagnosed with Parry Romberg Syndrome. Alex's facial hemiatrophy with morphea (localised Scleroderma) is consistent with Parry Romberg Syndrome. He has a “coup de sabre” sign on the right side of forehead. His tongue protrudes to the right due to hemiatrophy on that side. There are patches of localised Scleroderma on his right cheek, on the right of his anterior thorax and in his mid-lumbar region.
My son Alex was born April 1993 on the island of Rarotonga, Cook Islands. His birth 8 lb. 2 oz. was traumatic with a difficult forceps delivery. After birth he had a swollen and bruised head that took a week to heal. He looked normal until one day from school when Alex was about 7 years old, in 2000. I noticed a straight line bruise on his forehead, which I asked him whether he fell at school or maybe he hit his head on something. Because he had eczema since he was 3 months old, two of his skin marks were misdiagnosed as eczema. He was a hyperactive child and loves sports. But this mark or line on his forehead never disappeared and then I noticed the right side of his face shrank and his skin was darker than his good left side.
I took Alex to our family GP and he had never seen anything like this before. So he referred us to the government or public doctors, where they referred us to Starship Children's Hospital in Auckland, New Zealand in the year 2002. The paediatrician specialist, Dr. Andrews, did all the investigations and found that my son's health was perfectly normal but he's got Parry Romberg Syndrome. The Rheumatologist, Dr. Rudge, suggested immunosuppressive therapy might halt progression. He was given methotrexate weekly; folic acid weekly and methylprednisolone every 2-3months. He was on medication for a year 2002-2003, and since then he has not taken any medication. Now and then he gets migraines but according to Dr. Andrews, it does not relate to his Romberg.
Since October 2003, we have moved from Auckland, New Zealand to Melbourne, Australia and now under the care and investigation of the Royal Children's Hospital specialised doctors. The maxillofacial surgeon recommends maybe when he turns 15 or become an adult. There are various surgical procedures that can be used to improve the appearance of Alex's face. My son's main problem at present is that his jaw locks now and then especially when he is eating. That line mark on his right forehead called “en coup sabre” has white hairs and loss of hair from the front, 3 inches in and an inch wide. He does not comb or brush his hair because it is sensitive and sore.
Today, I am still trying other ways to find a cure for my Alex (now 12) and apart from medical doctors, I take him to chiropractors where they reckon that the forceps delivery damaged tissues on his head. Two months ago, he started taking glyconutrients supplement products by Mannatech, maybe this will help. These are missing biological sugars not found in our daily food. I am hoping and praying this will reverse the problem.
Feel free to leave a message for Noeline at rombergs@hotmail.com.
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