Posted by Margi (207.148.134.159) on July 29, 1999 at 15:44:35:
In Reply to: 10+ Bad night posted by Debbie on July 29, 1999 at 02:53:37:
Hi Debbie,
Sorry to hear the meds aren't working for Rich and about the scary test results. We're here for you and completely understand what you are going through.
You are Rich's best weapon right now - don't let the docs give you the run around. We can all take a lesson from Laurie (Drummer's wife) when it comes from dealing with the medical profession. Stand up and be counted, scream the place down if you have to, get a 2nd, 3rd, 4th opinion if you feel you need to. Sharpen your teeth, girl, Rich needs you to be strong.
Keep trying suggested reliefs until you find what works for him. Read the medical info on the bar on the left of this page, print it out - give it to your doc. No doctor is going to take the time or the interest that you can for Rich. Research everything you can so that when the docs give you a suggestion you can say, "No, those side effects are too scary", or "GIVE us a script for Oxygen! It's been proven to help in 80% of CH patients!" and back up what you know with printouts from this site.
Or try the grape juice and gingerale, or water, or, or, or.....there's TONS of info on this site and it's at your fingertips. Start clicking that mouse.
Feel free to email me directly if you need a shoulder - mine are wide and waterproof, been there, done that, t-shirt available soon.
Hugs
Margi