Saturday, February 20, 2010

A BIGGER ISSUE FOR THE PARENTS THAN FOR THE KIDS (13 WEEK OLD)


The day we returned from Maryland, we had an appointment with Santiago’s dermatologist. He was scheduled to see his doctor a month from that day but due to the increasing numbers of lesions and because some of them were developing under his skin, I asked to be seen as soon as we arrived in Columbus. Dr. Witman and her group of residents checked Santi’s new spots carefully while they quietly listening to the details of how the condition was advancing. My husband brought a recent medical paper from 2007 that had many statistics about JXG and we discussed it with the doctors. We wanted to hear them saying that the scabbing of the lesions meant that they were healing, that Santi was like the kid on the medical journal whose spots went away at 4 months but they could not say that. Dr. Witman, explained to us that the peeling and scabbing were part of the normal life cycle of the lesions, however, the yellowing was a sign of maturity. She also told us that the bumps under his skin were not “soft tissue” JXG and that was a great relief! We told her that we wanted to get a second opinion and she gladly gave us the name of 3 very well known children dermatologist in the US and offered to write a letter to our insurance in case they would not cover out-of-state consultations. I brought up again my concern about Santiago’s abdominal pain but this time I could not hide my tears. I told her about my struggle with his condition and she assured me once again that Santi was not in pain. I shared my fears of Santi being discriminated by his appearance and asked her about the possibility of removing the spots. She said that only if by age 6 the JXG did not go away, she would suggest plastic surgery for cosmetic reasons. She explained that plastic surgery will leave scars and there was no way of knowing how big they would be. On the other hand, she said: "we know that mother nature will take care of them with time and most of them will disappear without leaving any marks. Only for the big papules there is a risk of having a residual extra skin (kind of what happens when you take the water out of a blister) and then we would have our friends of plastic surgery help us”. I understood her logic but I still did not like her answers. So I vented, I vented it all, and she listened to me with no rush and an enormous sense of compassion. After I calmed down, Dr. Witman said that she was going to request an abdominal ultrasound for Santiago and that the Ophthalmology Department see him immediately. I thanked her deeply and we were sent to have the eye exam right there. Santi hated every single minute of it. The tests were not painful but long, and for a 3 month old to have all those light going to his eyes and not been allowed to close them was very uncomfortable. Plus, he wanted to sleep and we would not let him. After 2 hours of tests, the ophthalmologist said that his eyes were clear and taught us what signs to look for in case the JXG develop in his iris. She agreed with Dr. Witman that Santi should have these tests every 3 months until he was 2 years old and scheduled our next visit for April. We came home completely exhausted. I called the Radiology Department to make the appointment for the ultrasound and was told that Santi should not eat for 4 hours prior. I told the person on the phone that he was only 3 months, that it would be torture for him not to eat for that long during the day. She repeated again: “4 hours, ma’am”. As my husband left for work, I kept wondering if we were doing the right thing? Did we really need to travel 6 or 8 hours and have a second opinion to hear the same thing? The literature was pretty forward about Skin JXG course of treatment (meaning nothing you can do about it) and there was no doubt about his diagnoses. Did Santiago really need to go through an ultrasound because of the JXG or because his mom could not control her anxiety? I started to realize that maybe this was a bigger issue for me than for Santiago. Then, when a month later I found Dr. Sheila Weitzman video lecture on YouTube (available on our " About JXG" section), her words changed something inside me. “This is a real cosmetic issue for the parents. The kid obviously does not care at all but the parent does…”





*Our deepest gratitude to Doctor Patricia Witman and her team of residents who have been taking care of Santiago with great knowledge and sensitivity.

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