Thursday, February 11, 2010

A DIAGNOSES THAT PUSHES ALL MY BUTTONS (8 to 10 week old)

I remember very well the morning that we drove to Children’s hospital to receive the results of Santi’s biopsy. My husband was listening to NPR on the radio and my mind was completely blank. No one said a word and once again I was in auto-pilot mode. When Dr. Witman came to the room with a big smile, I knew she got good news, Santiago had Cutaneous JXG. What a relief! I could breathe again! She said that out of all the histiocytoses diseases, Skin JXG is the most common one and the least dangerous. This was really great news until we started to ask questions: “What do we do now?”, answer: “There is no treatment. The condition reverts by itself.” “But when?”, answer: “We do not know exactly. It usually regresses between 3 to 5 years but there are kids that take longer and others that take less”. “ Isn’t there a lotion or special cream we could use?, answer: “No, since JXG is not caused by a bacteria or a virus, we just need to let mother nature takes its course”. “Why did he get it?”, answer: “We do not know. The cause is unknown”. “How many more spots is Santiago going to have?” answer: “We do not know but probably more as he has a multiple expression of the disease”. “How much bigger are his current lesions going to get?”, answer: “We do not know. Papules are usually under 0.5 cm but there are giant nodules, called giant JXG, that are 4cm or more. Like the one he has in his head (the one we initially thought it was a bump)”. “Is he going to get more of those”. Answer: “We do not know for sure but hopefully not”. “Will they hurt him”, answer: “No. The lesions are asymptomatic but can be a problem if they grow in an area of the body that interfere with normal functions, i.e. his eyelid”. WHAT TYPE OF MEDICINE WAS THIS? My feelings of relief were starting to disappear and my anguish was coming up again. Dr. Witman mentioned that the eye was the most frequent organ involved with cutaneous JXG and even though the occurrence was low, earlier detection was key. Santiago would need to have an eye exam every 3 months until he was two years old. I asked her if his severe acid reflux could be linked to JXG. She said that probably not but she could not give me a definite answer. I asked her if we could test him for it and she said that we could, but she thought it was unnecessary since Santiago was developing normally and gaining weight. I gave her my most confused looked and she said “Even if something showed up in the scan, I would not remove it. The only way we could do that is either by surgery or chemotherapy, none of those are recommendable for young babies unless it is indispensable. Santi is responding well to his acid reflux medicine”. On the way back home, my husband was happiest as he could be but I was not and I knew very well why. If you asked any of my bosses about my qualities, they would probably tell you that my planning and organizational skills are my biggest assets. If you asked my husband about them, he would tell you that I am a control freak, and he is absolutely right. I have too many years of therapy not to recognize that I do not deal well with uncertainty. It drives me crazy! I also have a really hard time focusing mainly in the present instead of anticipating the future. JXG was asking me to face my two biggest weaknesses and I was not ready for it, specially with something that involved my little prince.

13 comments:

  1. I wonder if there is any correlation between infants taking acid reflux medication and JXG? My daughter has the same diagnosis and took acid reflux medication as an infant starting at at one month of age.

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  2. I will ask at the HAA Message Board and to the parents in our JXG Group. Santi had his acid reflux PRIOR to JXG but they developed with 2 weeks of difference. I will let you know!

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