Re: I am only 13 years old. I was diagnosed with this disease one year ago.I have to take Diamox 3 times a day.

Hi. I was diganoised with PTC 10 years ago (when I was 15) I too was told that I would need a shunt put in. After my mom researched it online we refused having the shunt put in (as it is 30% chance of death, seizures, having to have shunt replaced as it breaks/gets damaged often and many, many other horrible side effects that can go along, I would STRONGLY urge you and your mother to check this out before doing anything) I also refused spinal taps. I have a great neurologist, I'm in Canada, not sure where you are, but he is the best. I was put on diamox and dexadron (which is a steroid) this caused my symptoms to stop and was kept under control with just daily diamox use. I was very bad when I was diganoised, I have lost bascially all of my vision and I did not need surgery or spinal taps. The spinal taps are not helping at all, all they tell the doctor is how much fluid is building up, which a good opthomologist can tell as well. It took me a few months to get better on the meds, but ever since I've been okay. You just have to try and keep your weight from going up and down too much. Try to loose weight, which 10-20lbs can make all the difference, and you can loose that weight in a month for drinking water instead of juice or pop. I am currently 4.5 months pregnaunt and haven't taken my meds for that long, and everything is great. This is something at 15 I was told and since that I should never get pregnaunt. But things are good, and I know it's hard right now, I've been there, it's hard with school, but seriously, taking a semester off to start steroid treatment and getting better, is much better than living with constant headaches or having a shunt installed.

My suggestion to you is to refuse the shunt and have your neurologist start you on steroid treatments, if this is not something he wants to do find another doctor asap.

I wish you all of the best, and I hope everything works out for you. If you have anymore questions please feel free to email me at clarkashlee12@yahoo.com Tweet