Yes it’s an extremely small dose.  She was started on 500mg extended release after her first lp and that one pill made her feel like dying, I’m sure it was LOW pressure.  So after the second lp then waiting two weeks, she started on ¼ of a 250mg tablet NOT time released.  She actually took ¾ of a pill yesterday and today is better.  I told her to just take what her body tells her to take.  We started that low as the beginning of a titration schedule with the intent of her increasing every week.  At her last lumbar puncture the doctor said her spinal cord seemed stiff, suspected that she had meningitis when she was younger and that we just didn’t know it, and he said she would need a lower dose of diamox than most people.

Today is better, but geez with this condition it can change so quickly, especially in the beginning stages of treatment.  It was hurting me to watch her hurt so bad the last two days.  But this morning she was smiling and she’s starting to eat a little so I suppose her body is beginning to get used to the diamox.

Here’s to a DAILY IMPROVEMENT!  I say every day that it’s going to get better and I’m going to say that until it does.  And actually today is better so maybe my mantra is working.

Shannon, how old is your daughter and what is her history?

Janet