Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 I took Maddy in today to see her neurosurgeon. When I talked to the nurse for her on friday we were coming in to discuss replacing the programmable shunt with a non- programmable one. I had called in the day before and told them enough is enough i want it all out. Maddy was and still is eating poorly,drinking very litte,the headaches and abdmoninal pain have contiunued. Dr. W said she wants to wait and see how she does for a few more weeks. She said she doesnt know why she improved on diamox and said maybe her pediatrician will prescribe it for her to take a couple days a week to help her eat or maybe give her magnese which they give to cancer kids to help them eat too. Maddy doesnt need anymeds to help her eat or drink. I showed her the lump on her abdomen but she didnt seem very concerned. I am at a loss,this is so unfair to Maddy. I have an appointment on Wednesday for the pediatrician and I pray he listens. I have lost all faith in her docs. If he doesnt listen I am gonna ask neurosurgery to refer us to ucsf immediately. Maddy has been through enough. I think the lump has something to do with headaches and lack of appetite,just a gut feeling. Quote Link to comment Share on other sites More sharing options...
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