If you have a child with a genetic disorder
My mother worked as a maid for many years. Before that, she was a full-time homemaker and whether working full time or not, she kept the house SPOTLESS and also cooked dinner from scratch every single night.
This is one of the reasons I lived as long as I did before finally getting really sick and getting a proper diagnosis -- a fairly cutting edge diagnosis that did not exist when I was still a child. Had I gotten deathly ill sooner, I likely would have simply died and there would have been no explanation as to why.
My mother and I had an acrimonious relationship when I was a child. I think she was frustrated with me in part because no matter what she did, it wasn't ever good enough and I was just sick all the time.
So I would get told it was my fault for being a picky eater and things like that. In reality, I was a picky eater because of my undiagnosed genetic disorder.
I knew that I felt worse if I didn't eat in a real picky manner, so when I had my first child -- who just so happens to have the same genetic disorder I have -- I was careful to find ways to let him be picky and still get him to eat enough. I was very sympathetic to him not liking certain foods or whatever.
Long before we were both diagnosed with atypical CF, simply being sympathetic and supportive of his quirks meant that he had a better prognosis than I had. We both had pneumonia in infancy. My next bout of pneumonia was at about 4 yrs and 3 or 4 months. His next bout was at age 5 1/2.
I used to belong to some CF lists and I tried to share what was working for me before deciding this was not worthwhile. During that period in my life, one mom told me she was giving her child with CF sea salt and coconut oil like I recommended and "He was in the ER less but wasn't taking less medication."
In other words, he was still taking just as much in the way of maintenance drugs. I've told this story before on this site to make the point that it's hard to count the crises that don't occur and this child was, in fact, taking less medication because they were getting "extra" drugs less often.
I tell it now to say that even JUST eating better, without taking extreme germ control measures, can help a child with a genetic disorder -- if you know what constitutes eating better for the condition in question.
I spent a few months mostly bedridden before being diagnosed. My son with CF was never anywhere near that sick and has had an easier time than I have with gradually growing healthier in the years since we were diagnosed.
I have reason to believe that CF is not the only genetic disorder that essentially fosters extreme malnutrition for specific nutrients and/or misprocessing of certain things such that, for example, avoiding one type of fat and loading up on another can be helpful.
Doing what I have done and coming back from death's door is extremely hard. But if you have a CHILD with a genetic disorder and can figure out how to take better care of them for the disorder in question, their prognosis can be greatly improved without necessarily pursuing the kinds of extreme measures I took to recover from spending a year at death's door.
If you are here because you are a parent, you may also be interested in Stuff for Kids.
This is one of the reasons I lived as long as I did before finally getting really sick and getting a proper diagnosis -- a fairly cutting edge diagnosis that did not exist when I was still a child. Had I gotten deathly ill sooner, I likely would have simply died and there would have been no explanation as to why.
My mother and I had an acrimonious relationship when I was a child. I think she was frustrated with me in part because no matter what she did, it wasn't ever good enough and I was just sick all the time.
So I would get told it was my fault for being a picky eater and things like that. In reality, I was a picky eater because of my undiagnosed genetic disorder.
I knew that I felt worse if I didn't eat in a real picky manner, so when I had my first child -- who just so happens to have the same genetic disorder I have -- I was careful to find ways to let him be picky and still get him to eat enough. I was very sympathetic to him not liking certain foods or whatever.
Long before we were both diagnosed with atypical CF, simply being sympathetic and supportive of his quirks meant that he had a better prognosis than I had. We both had pneumonia in infancy. My next bout of pneumonia was at about 4 yrs and 3 or 4 months. His next bout was at age 5 1/2.
I used to belong to some CF lists and I tried to share what was working for me before deciding this was not worthwhile. During that period in my life, one mom told me she was giving her child with CF sea salt and coconut oil like I recommended and "He was in the ER less but wasn't taking less medication."
In other words, he was still taking just as much in the way of maintenance drugs. I've told this story before on this site to make the point that it's hard to count the crises that don't occur and this child was, in fact, taking less medication because they were getting "extra" drugs less often.
I tell it now to say that even JUST eating better, without taking extreme germ control measures, can help a child with a genetic disorder -- if you know what constitutes eating better for the condition in question.
I spent a few months mostly bedridden before being diagnosed. My son with CF was never anywhere near that sick and has had an easier time than I have with gradually growing healthier in the years since we were diagnosed.
I have reason to believe that CF is not the only genetic disorder that essentially fosters extreme malnutrition for specific nutrients and/or misprocessing of certain things such that, for example, avoiding one type of fat and loading up on another can be helpful.
Doing what I have done and coming back from death's door is extremely hard. But if you have a CHILD with a genetic disorder and can figure out how to take better care of them for the disorder in question, their prognosis can be greatly improved without necessarily pursuing the kinds of extreme measures I took to recover from spending a year at death's door.
If you are here because you are a parent, you may also be interested in Stuff for Kids.
