Guest guest Posted September 21, 2010 Report Share Posted September 21, 2010 Would you please forward this question out to the network? I really need help. My daughter is 3 ½ years old. She has been diagnosed with Apraxia, Global Development Delays, Infantile Shutter Syndrome, and has a Seizure Disorder. She is currently on Keppra (2x a day 10ml – she has been on Keppra for the past 1 ½ years) and has recently started taking Diamox (1x a day - (2) 25ml tablets crushed at night). Ever since introducing the Diamox, we have seen hair growth on legs, arms, and back and now we are dealing with head tics (nods) that are thrusting her forward and causing her to bruise her forehead. It occurs anywhere between 4-14 times a day. The nods are quick, but are frightening because you don’t know if she is going to get really hurt. We put a headband on her to protect her head and the neurologist just put her on Catapres (1x at night .1mg) to help with the tics, but it doesn’t seem to be working. She has been on Catapres for 2 weeks and I was told that we should see a difference. The doctor has not seen her because we don’t know when they will occur nor has she had an MRI. She did have an 48 hour EEG where I pushed a button when she had the TIC, but they did not see any seizure activity at that time. My concern is that she may be over medicated or the Diamox is causing the tics. I am also concerned with the # of meds she is on and wondering if the Catapres is a band-aid versus understanding what is really going on. Does anyone have any experience or have a suggestion on what I can do to get this under control? I’m desperate. Bernadette Bernadette.Shirghio@... Bernadette.Shirghio @pfizer.com Quote Link to comment Share on other sites More sharing options...
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