A Misdiagnosis of my Son’s Rare Disease Caused Child Services to Get Involved

February 3, 2016

My son Jacob was born with mastocytosis. He was diagnosed at two weeks old. At first we thought he just had birth marks but the paediatrician on the maternity ward said they were probably marks from where he was lying in the womb. After all, he was a big baby weighing in at 10lbs.

When the marks hadn’t faded after those first two weeks, we still assumed they would eventually. A health visitor mentioned them and I said that I wasn’t too worried.  She organised a doctors appointment later that day. When I arrived, the doctor looked over him and quickly diagnosed them as bruises and referred him to see a pediatrician. When I got home we made plans for my Nan too look after my daughter, who was then 3 years old. We were about to set off when two social workers knocked on our door. They explained that we needed to go with them and both our children, which was a pain as she was at my Nan’s and when I was escorted to her house to pick my little girl up it greatly upset my Nan.

Shortly after we made our way to the hospital were we waited to be seen by a paediatrician and when one of the social workers asked how long we would have to wait and the nurse said we are seeing to the children that are actually sick first! Eventually when we were seen by the pediatrician she had luckily seen my son’s condition before and we were cleared of any wrong doing. My son has cutaneous mastocytosis, a rare disease that has no cure and causes the mast cells to overreact and produce too much histamine that causes allergic type reactions to stress, food, friction, temperature change etc. He has been taking antihistamines and antacids since he was a baby and luckily now he is almost two-years-old and doesn’t have as many reactions.

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