Hi, I'm a newbie here. 2 weeks ago I didn't even know that diagnosis of Ichthyosis existed.
My son has been suffering with this dry and flaky skin condition from 2nd week of his life. In his first 6 weeks of life he literally shedded all of his skin, including his face and his scalp. We had no idea why this was happening to him. We don't have any close relative who would suffer with the same or similar condition. I remember the midwife saying to me that she'd only seen a similar case once in her career and that baby was born prematurely. Our son was also born prematurely but only by 2 weeks. After the initial shedding of his skin, his skin stayed dried and flaky to date. His worst affected areas at the moment are his abdomen, his upper arms and lower legs/shins.
Other than that he has a silent heart murmur and keeps having blood in his stool. I have suggested a Coeliac test to our GP and that was done and came back negative.
He has never been investigated for his skin condition, our GP just tells us to get him Oilatum. We have been doing that but for the last 6 months I switched that for organic coconut oil and it seems to be conditioning his skin just as well. Beside all of these issues he also suffers with frequent infections (mainly ears) and he was born with a dilated kidney which has now apparently corrected itself. If he has Ichthyosis, then I would say it's a mild form, we have kind of got used to living with it. I am more concerned about the blood in his stools and wondering if it could be associated with his skin problems. We are currently waiting for his first dermatologist appointment. Can anyone tell us what we can expect from the appointment?
I should just add that he was born 18 months after my thyroid cancer and radioactive iodine treatment.
Thank you in advance for your help.