August The damage to the hypothalamus gland has caused some other problems.
She started Lupron to counter some of the effects of the damage to the Hypothalamus gland.
She is also gaining weight because she's always hungry.
Soon she will be starting a Clinical trial to see if a new drug will help this.
Nicole is also a subject in a clinical study at Children's Memorial to see if
they can make a test to predict the severity of symptoms of people with NF.
September Nicole had been complaining about pain in the area of her shunt, and an occasional headache. MRI showed growth in another area of the brain, however due to a different technique in MRI, the doctors will schedule another MRI using the same technique.
October 24th Doctors decided to explore the shunt, and found that the shunt was in fact failing, but was not completely clogged. They replaced the bad section. Still waiting for the MRI.
Well. The shunt revision failed to eliminate the headaches.
October 26th we had an MRI and it showed no growth. Thank God. But we will continue monitoring her with the MRI's every three months.
November 21st Nicole's headaches progressed to the point where she would cry. they became more frequent, and her moods changed. She became irritable, snappy, and definitely not herself. And the Tylenol would only last a couple of hours.
We are weighing our options as Nicole is again having the headaches two days after revision.
December 16th Well we revised the shunt AGAIN. This time I hope it works. Only time will tell.
Well still having the headaches, but there is a clue. We think it might be SVS Slit Ventricle Syndrome. At least they might be able to do something now.
December 29th We had to rush Nicole in to the hospital where they, after seeing the CT scan pictures, called in a Neuro-surgery team, and revised her shunt right away.
December 31st We had an MRI which had been scheduled a couple of months ago. Thank God the MRI showed no tumor growth. The Neurosurgeon confirmed SVS and will try a higher pressure valve the next time we have to revise the shunt. Since she is still complaining of headaches off and on. I'm sure that will be in 2-3 weeks.