Is there a doctor in the house? (serious -> mucolipidosis

Rathark · Post by **Rathark** » 2002-11-23 08:04am

Please bear with me right now, for I have a fever and I'm not exactly thinking straight. A co-worker has a 21-month-old daughter who has been diagnosed with mucolipidosis typre 2 or 3 (aka I-cell disease). She had recieved professional advice stating that an injection to strengthen the bones (Im too fucked up to remember the name or look it up just yet) is the best she could hope for. It would prolong her life, but there is a risk of high fever. And if this fever is even half as bad as what i have right now (and i know it will be much woirse) then no child deserves it. However, this should still be preferable to the alternative. I-cell is apparently still an incurable disease.

She has told me that she is not satisfied with the response. Clearly she is worried about side effects. I feel a bit helpless about this, since I wrote an email to an Aussie doctor inquiring about this (hence the response), and I feel that my complete lack of medical knowledge can make no difference, as much as I want to make a difference some how (and I'll feel like shit all over again if i dont).

If there is anyone with any knowledge / experience in this subject, please post. Inthe meantime I may have to go for a walk in Korea's near-freezing night to cool my head down (if that will help, like I said Icant think straight).

If you know nothing about this, then dont worry, I'd like to thank you for your intentions anyway.

salm · Post by **salm** » 2002-11-23 01:06pm

i just found this in the web:

type II is a lot worse than III

type III: hip bones can be corrected with surgery after puberty

heart deformations usually dont cause problems untill adulthood,
and if they do, they can be removed by surgery.

Rathark · Post by **Rathark** » 2002-11-24 07:10am

Thank you kindly, Salm. Fortunately the motel caretaker gave me a pill (I was too disoriented to walk to the drugstore without fainting), and I can now feel my IQ points coming back.

From what I have gathered, the injection is still the child's best hope. Fear of side effects is understandable, but I feel that it may be the lesser of two evils.