Caregivers' Guide: Section 2

One day, when we were having a particularly traumatic time in the pediatric intensive care unit, I found a phone and called my pediatrician. He was on the phone instantly and talked to me for fifteen minutes, interpreting for me the jargon being used by the specialists and giving me some guidelines about how to approach them with my concerns. With his help, I went back in feeling more confident, not like some intruder in a world I didn’t understand. Dealing With Doctors If you have never spent a lot of time with doctors, now is the time to make up for it. Since ichthyosis is a rare and complex condition, many specialists will probably be brought in on your baby’s behalf. Although the number of professionals may intimidate you, as you become familiar with each of them and their functions, you will begin seeing them as your baby’s team. Remember, you and your physicians are on the same side; you both want what is best for your child.


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