Danny - son with Pontine glioma - need some advice

[Elonna]

John,

If you guys will make sure that Danny's drinks a sufficient amount of water there should not be any build of anything in the brain that would be caused by the lysing process using Protocel, especially in light of the fact that you started him out on #23. The brain needs water just as much as the body. Keep his water intake up.

However, steroids are often used by individuals with brain tumors because the tumor itself will keep the brain "inflamed" as it is not supposed to be there. As the tumor grows, pressure can build. Deficiencies begin to show up, more than just headaches. Not everyone with a brain tumor or pressure in the brain will have headaches. You need to be watchful over his motor function, eye sight, balance when walking/standing; things such as this. Steroids are sometimes a necessary "evil" as they will reduce inflammation and/or any edema in the brain (or other parts of the body). When used, they should be used sparingly because of what they can do to the rest of the body and the withdrawal symptoms are horrible to deal with. The weaning off time can be extensive depending upon the dosage of the steroids used.

Additionally many brain individuals are on some sort of anti-seizure medication to keep the possibility of seizure activity down. However, physicians generally only prescribe this based upon tumor location and the likelihood of seizure activity.

When on Protocel, especially initially, and dealing with the brain individuals will sometimes experience a return of symptoms similar to those in which they had immediately prior to being diagnosed with the tumor. However, these "recurrences of symptoms" are never as intense as they were prior to diagnoses, just similar to those experienced then. These have come to be known as "Funks". These are short periods of time where there are neurological deficits such as a non-stop headache for several days, imbalance, consistent dropping of items without explanation, inability to get thoughts out of the brain; things like this. These Funks have been report to last anywhere from several hours to up to about 10 days. Generally though the average is 1-3 days. Then the individual returns to baseline or often is much stronger. These Funks happen as the nerves are healing in the brain. The brain is a large electrical appliance really. The tumor breaks connections between the electricity of the nerve cells there. As the tumor is leaving and the nerve endings are touching back together, there is "sparking" that occurs until the nerve(s) settles back down. This is what causes the Funk periods.

Let me know if you are still wondering about anything and, of course, keep us updated on Danny's condition/progress.