The story of Alicia
I was 6 months pregnant when I received a call from the doc saying something is wrong with your baby you need to go to Indianapolis for further testing. Usually when you’re sent to Indy or Louisville where I live it’s not good. I get there and fill out all the paper work and do the blood test and they do an ultrasound and then they take me to an office where they tell me there’s a possibility your son has trisomy 18 OR a rare skin condition called x linked ichthyosis. They go into great detail about both conditions and then say we can wait until he is born to tell or do an amnio and tell you in 2 weeks. I couldn’t wait 3 more months to find out if my baby would only live for up to a year so I did the amniocentesis. They notice something else during that ultrasound while the doctor is sticking a large needle in me and watching the screen to avoid hitting the baby he says something is wrong with the heart as well and wants us back in a few weeks for a pediatric cardiologist to look at my son’s heart in ultrasound. We finish with the amnio and go home and wait. We finally receive the call and they say he has the skin condition and not the trisomy 18. We were so happy and now research needs to be done. this was 2008 and info on this wasn’t as readily available as it is now. We later went for the cardiologist appointment and found out he has a heart murmur that isn’t a big deal and no medication needed, actually runs in my husband’s side of the family. When my son Vernon was born January 18th 2009 his skin was shedding and until nurses were told about his condition they all said “oh he has dry skin” which is so irritating to hear and even today when someone says it I have to smile and inform them instead of kicking them in the shins like I so want to do. When he was just weeks old we went to a dermatologist and the man actually brought out a text book and tells me he has never seen this before and says I don’t know what to do or tell you and recommends I use certain lotions. Needless to say we did not go back. Vernon is now 7 and we have a pretty good idea what works best for him and what doesn’t. Most of the lotions do not help, only baths help and every time he gets a substitute teacher he comes home with dumb things said to him by them. My favorite was one old lady told him he needed to take a bath. He gets the dark scales on his face and neck (as of course everywhere else) but they see that and assume he hasn’t bathed in a long time. He has been in trouble for stopping in the middle of P.E. for water. I have emailed and called and have had to make many visits to his school in just the almost 2 years he has been there , due to people’s stupidity. The best part about the school incidents is at the beginning of the year parents are asked to write down any and all issues,quirks and info on their children this is all allegedly kept on file for reference. He is a happy little man and has had no issues making friends and so far the parent’s have been pretty awesome. For us the things that work are acne bath wash and I bought a pair of scrubbing gloves; and psoriasis lotion. Before I got the scrubbing gloves when he was smaller we tried a clean tube sock with soap and that helped get the scales off and didn’t hurt his skin. I have read about the bleach baths but we haven’t tried those yet.