Babeees <333
New member
My 7 yr old Daughter has congenital hydro (vp shunt 1 day old) with 17 revsions. She had a non-programmable shunt from 2002-2007(no anti-syphon device). She began having shunt issues 2007 and they put in a programmable shunt which she had until a couple months ago. She also has Chiari Malformation 1(decompressed 2007 sub temporal decompression same day),epilepsy (complex partial seizures and focal motor),ACC. Her last revsion was 9weeks ago when they put the non-programmable shunt with anti syphon device in. Since this time she has been having headaches,seizures,and lack of appetite. Her local nsg said she doesnt want intervene for 3-4 months. So we decided to take her to UCSF. The doc up there said he wanted to take her case and try to help her. 2 weeks ago we went up there for ICP monitoring. Her pressures read from -10 to 17. She read negative numbers when sitting up and read normal range when lying down. She only complains of headaches after she wakes up (within 20 min or so) or when upright. After 4 days on monitoring doc said she read normal and said it doesnt appear that headaches are shunt related. They took her off all pain meds even tylenol and motrin. They said she was having lortab withdrawl headaches,so they put her on naproxyn every 12 hrs for 3 days,and it didnt help her. They then said she was having low pressure headaches based on what they and I had observed. She also had a few seizures when in the icu,one last 5 min and no meds were given to stop the seizure. So after being there for a week we were sent home and told "wait and see how she does" and to not give her any pain meds except motrin 3 doses a week. They didnt do any type of scans or films while we were there. Last MRI was in Jan and last CT was in March. So we are back at square 1 of wait and see. Maddy has a MRI scheduled for next friday. I am worried as she isnt any better,she is worse. She left dehydrated. SHe didnt eat or drink much at all there. Her seizures have increadsed since we got home. The only doc here who listens is her local neurologist who feels based on her symptoms,and past history,the seizures are shunt related. We saw local nsg on monday and they said she looked good,yet didnt even listen to me about her symptoms,she has also started sleeping alot at night. What do we do now. Just wait?