I posted on BT2 a few times, and some of you may remember my daughter Helen. Lizard referred me over to this site, as we have been having some difficulties with her and are looking for some help.....or just a shoulder to cry on.

Helen is 5 and has hydrocephalus due to aqueductal stenosis. She had a medium flow VP shunt placed when she was 3 mos old. It has never been revised. She has a seizure disorder, complex partials that generalize, and require medical intervention to get them to stop. She is left monoplegic and wears AFO's. She just started kindergarten in a private program, but just a normal program. She seems very smart, and has begun reading.

She has never really been potty trained, and started having urinary incontinence this spring, she was diagnosed with kidney reflux and was put on ditropan and an antibiotic. She also is on miralax for constipation. She just had an MRI on friday of her brain (NS wanted to see CSF flow), and her lumbar/sacral region (uro wanted to check for tethered cord). I am waiting for the results, and it is killing me. Of course I can make my mind think of all kinds of terrible things that could be wrong, but I am trying very hard not to do that. I have the films, but fight myself everyday to not look at them. I can't read those things!

We have been having some behavoiral problems. She can be happy as a clam one minute and the next be throwing a temper tantrum. Any attempts to help alleviate the tantrum makes it worse. If you leave her alone, it escalates and she can't calm herself. We have been working on a sticker chart with special rewards if she uses her words rather than the tantrum. It works sometimes, and you can see her trying to hold it all together, but sometimes it seems so difficult for her.

She has been complaining of headahces, sometimes it is with a pitiful cry lay your head down kind of thing, other times it is "I have a headache", now I am going to go run and play with my sister and brother, and have fun. I can't tell if she is faking or not. I don't know if the behavior is related to the headaches or not; Or did I spoil her when she was little, and now I have a brat.

I am so lost I don't even know what questions I have to ask, I have a thousand, I have none. Guess just looking for some support from somebody who has been there. I never know what to expect when I wake up each day.

Sorry this is so long,thanks for listening. I hope to have some results today and maybe then I can figure out what my questions are.

Tammy, Mom to Helen 5, Jill 10, and Evan 13.