Guest guest Posted August 12, 2010 Report Share Posted August 12, 2010 Since we have got back from Indiana about 4 weeks ago Maddy's headaches have gotten worse. She is still having back pain,leg pain,neck pain,arm pain,leg and foot cramps,as well as bladder issues. We have seen nsg 2 times since we got back. He said her shunt is working. Her pain is getting worse. He wrote for periactin yesterday and all it did was turn her into a mean zombie. He said she can take it just at night instead of every 12 hrs. We have an appointment with Dr. Sun @ Oakland Childrens Hospital next month. I am very anxious to get her there. I know this doctor can help her. I don't know if worsening headache is due to us flying back east. Her headaches werent nearly as bad. I know am worried we are dealing with a shunt and possible tethered cord or even syrinx issue. The only reason I think a syrinx is she will get really hot and stay really hot even with cold water etc. I also noticed since her pain level has increased she has been repeating herself even more. Good news is we stopped the Topamax today (she has been tapering down for several weeks) and so far no seizures in about 2 months. Please keep Maddy in your prayers. Quote Link to comment Share on other sites More sharing options...
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