pressure normal during ST, now what?

[lil sunshine]

Hi my 10 year old daughterDOB 6/93 had her spinal tap and her pressure was measured at 18-20. The liquid was clear, dr says infection test came back negative.We are waiting for further tests to come in.
I have written before about possible PTC or NF1. She has enlarged ventricles and her septum pellucidum is missing.Her head circumference is also in the 95% for her age. Dr says the defect could be causing the headaches, daily for at least 5 yrs, but is perplexed about what is going on with my daughter.
She meets the CAL criteria for NF1 but no lisch or neurofibromas yet. Both eyes show a loss of perphial{sp} vision.She also started puberty at the age of 7 and at 10 yrs old started her monthly periods. Her bone age was put at 13-14 yrs.She is 5'2" and most people think she is 13 already.She also has the feeling of needing to throw up but doesn't.
My question is: If pressure at ST was normal then why does she have the headaches and what more can be done for her. I am wondering if she has a tumor on her hypothalamus{glioma due to NF1} which seems to go with her symptoms. The neurologist said maybe a chari malformation but doesn't really think that is it.
Any information you can provide will be appreciated.
Thank You,
Bonnie

[CCF-Neuro-M.D.-CS]

A normal pressure on the spinal tap only helps to exclude pseudotumor as a consideration. Normal headaches do not have to have elevated pressure. If your daughter has not had a MRI of the brain it would be reasonable to have one. Also, if one is performed a MR venogram (imaging of the veins) of the brain would be helpful. At this point I would have to recommend that you see a pediatric headache specialist. If you are in the area, Dr A. David Rothner is a fantastic pediatric neurologist who specializes in headaches. Otherwise contact your closest academic center and ask them. There are treatments which can be given, but without seeing her and examining her I can not recommend a specific one. Good luck.

[lil sunshine]

5 days after ST and now Mary not only has the regular H/A she always has but her head hurts on the sides and back, down in the neck area. Actually it has been hurting like this since the ST, even after drinking lots of water and caffiene soda. Her appetite has gone from not much to little.  Neuro says maybe blood patch on Mon if not improved .
Bonnie