TEX-YOU ARE AMAZING!!!!!!
I've been walking that fine line of pretending my issues have no bearing on my son's illness but have known all along they do. I'm branded a health nut, in which I'm really not but have been forced to wake up to what our society doesn't see. Sometimes I feel like characters in the movie The Matrix- ignorance is bliss and I'd rather be inserted back into the Matrix and enjoy. But once you learn, how do you go back to what you know is harmful?
Thanks for the information I will bring it up when the nurse calls back today. His 6m visit is in a few weeks so hopefully this information will be seriously considered. I'm excited to see it in print yet a bit sad because the PSC is enough to deal with and it isn't even at the bad stage. Sometimes I forget the world of a 16yr old- he asked this weekend why we never told him his condition was terminal. I was surprised because we have always been up front with him but never dwelled on the ultimate outcome. I'm afraid of the possibility of reckless behavior if he dwells on what he will have to deal with in the furture and becomes depressed. 2011 was the year of labwork, doctors, and procedures for him, all around the time of his birthday, so it wasn't the most jolly of times. I should know by the mere fact of how many times I need to repeat myself that a teen needs continual reminders. I've brought up diet, genetics, etc. to him for quite a while now but with this additional information and hopefully some confirmations down the road, he'll be more receptive to watching what he eats.
Since he spends equal time with his Dad and me, it's a bit more complicated so I have to convice two people how important this is. He's matured beyond his age, but I've simply asked him to at least start with cutting down on the processed foods and to eat less bread and filler foods. His appetite is affected by the cholestyramine & PSC so I've stressed that he needs to be attentive to what he puts in his body since he already doesn't eat as much as he should. It's hard though, looking at him, you'd never know because he's on the football team, lifts weights, and looks like any normal 16 year old.
Again, thank you so much Tex for the information. So much I've what I've found on the internet regarding PSC is only the overview of it's rare, rarer in children, no cure, liver transplant or death. That's pretty shocking information to come across so I've already warned my son to be careful about what he googles. The nurse cannot even pronounce the medication he's taking and flat out has told me she's not that familiar with it.
I would hope that "they" would take an interest if they are charged with my son's care. They are all very nice and concerned so hopefully bringing up topics for consideration will not offend them and if it does- it won't be the first time I've been offensive.
You made my day.
I've been thinking lately that God has put me on this path to help guide my son on his. First hand knowlege of how food directly impacts our health is priceless. He will have to make his own choices but at least I can be the constant voice in his mind of what direction he should be going.
Visit the Microscopic Colitis Foundation Website
Just got off the phone with the nurse and my son's GI consulted with mine and he's not comfortable making a referral to Enterolab. They're not sure how to interpret the results, they don't have proven stats, etc.... blah, blah, blah. But I am more than welcome to do it independently, meaning pay for it myself and do whatever I want with the results. At least the nurse was nice about it. They can't do anything more but do more lab tests to see where he's at. The only offer was to decrease the cholestyramine but that's not an option, if they would have read their notes from my numerous calls, they would see that the puritis is still an issue at the dose he's at. BIG SIGH.
That's sad.
