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Hello-
I wanted to make the parents of older kids 4 and over that it is advisable if your child is taking or has been taking diamox/acetazolamide long term to add the pedi urologist/nephrologist to your specialist list.
Benjamin, as we learned at our appt. yesterday with these folks, has a large stone in his bladder and some calcification in his kidney tubules. The stone will be removed with a laser and the kidney problems monitored. However, we requested an appt to discuss this possibility after learning from another parent of an older child that he was having these sort of issues. Ben had shown no other symptoms other than some sediment sometimes when urinating (like 2xs ever). So, we are happy we have caught this early before it caused him a lot of pain which the urologist had said it certainly would have if the stone has tried to come out. "Excruciating pain" were the words used.
I appreciate this web board very much as I what I have learned here from other parents has enabled my child to avoid many painful things associated with the course of Canavan Disease. I am hoping to do the same for other kiddos and families even if I am sharing a snippet of my child's private medical info in the hopes of helping someone else. I would encourage those to share info to make this disease as pain free as possible. Research and funds are the key to a finding a cure or treatment but communicating the helpful knowledge that one may have will help other families ensure their children already afflicted with degenerating nervous system have the best quality of life possible by avoiding discomfort or pain. I encourgage everyone to please do so. Ben's Dr. wants him to discontine the use of Diamox immediately as this is the likely culprit.
Abby and Benjamin
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