Quote: What are some other things that might go too often undetected in the current medical industry climate and cause similar kinds of problems?
Hmmmm...good question, Joe. Off the top of my head, it's hard to think of another disease where the same issue of dogmatic thinking leads to as much missed and under-treated disease.
I guess celiac disease would fit the bill. In medical school, we were taught that celiac disease was a rare disease, which always resulted in chronic diarrhea and weight loss. (It is due to an autoimmune reaction to gluten in wheat and other grains). More recent research, though, shows that at least 1 out of 200 samples of banked blood contain the antibodies specific to celiac disease - making it way more frequent than previously thought.
Still, in this country (US) you are unlikely to get tested for this unless you present with the "classic" symptoms of diarrhea and weight loss. There are probably untold numbers of people out there with milder chronic GI symptoms - probably a lot of people diagnosed with "irritable bowel" - who in reality have a mild form of celiac disease. And even though the incidence is higher in people who have thyroid disease or Type I diabetes, endocrinologists often don't think to look for it - because, after all, that's a disease treated by gastroenterologists!
This is one area where European medical practice is ahead of the US - there screening programs have even been put in place in some countries.
Of course, there are plenty of diseases that get missed, but that's often due less to the current industry climate and more to the inherent difficulties of those diagnoses. I think it is true, though, that people with hard-to-diagnose diseases often end up on the "specialist merry-go-round" - they see one specialist, who determines that the illness isn't due to anything in their field, so they go to another specialist, etc. etc. with no one looking at the big picture and putting all the peices together. Ideally that would be the job of the family physician or internist, but these days that primary care person is rushed and overworked, and may not have the kind of long-term relationship with the patient that facilitates diagnosis ("I KNOW there's something wrong with Joe, this is not like him"). Finding a good primary care physician and sticking with them is your best insurance.
Autoimmune diseases in particular can have a lot of vague symptoms and be difficult to diagnose if you're not thinking of them - lupus, for instance, is called the "great imitator" because the symptoms are so varied, and often are mistaken for other diseases. The AARDA, an advocacy group for autoimmune diseases, has called for the formation of integrated multispecialty clinics to treat autoimmune diseases, but that hasn't happened yet.
Information management in medicine is still somewhat archaic. One of the great advantages patients have nowadays is access to the internet. Although much of the information they may find there is wrong or even dangerous, if you know your way around you can often find out way more about your own health than you could in the old days. Searching PubMed, which searches medical articles and gives you the abstracts, is often a good place to look, although the medical and scientific jargon will be thick. Also guidelines published by the major medical societies, and patient advocacy groups for various illnesses. can be great sources of information.
I would say to patients out there: - trust your instincts. If you're not satisfied, push for answers. - do your own research - always follow up and get your results (actual numbers) when you have lab tests done.
Thanks for the additional info. I heard once from a parent of a child in S13's Cub Scouts that she had put him on low carb diet because of his ADHD. D10 does seem to get worked up after high carb meals, and she loves potatoes, pasta, etc.
Do you know if there are any links postulated between carb intake and manifestations of ADHD symptoms?
Happy Mother's Day!
Joe
My sitch More importantly, Light A Million Candles
Joe- none of the studies on sugar and kids with ADD really seemed to pan out. That being said, we all know that a diet high in refined carbs can lead to blood sugar swings, and every parent knows a hungry child with low blood sugar can get pretty irrational! Also, a diet that is low in protein may not provide enough of the precursors needed for most neurotransmitters. I think overall, a balanced diet with whole foods would probably help a lot of kids.
As far as your D goes, though - do get her =screened for celiac disease. In some people it can have effects on the brain - even so far, in extreme cases, as causing calcifications in the brain or psychosis. These are really rare, but given your family history, it would be good to know she doesn't have this problem.
This idea grew out of a discussion on another thread:
"The Chair Analogy":
Situations on the DB board tend to fall into one of three categories.
CATEGORY A: By far the most common type - the marriage was overall good (not perfect) before, WAS has had a crisis.
CATEGORY B: Not married, no kids, or newly married, no kids, with infidelity on WASO's part
CATEGORY C: Married, marriage was never good before (abuse or drugs) or recently uncovered chronic problems (serial cheating, substance abuse, compulsive lying) which have been going on for the duration of the marriage.
Often the question arises of whether one should be DBing or not in a particular circumstance. It came to me last night that this could all be clarified by using the analogy of a broken chair:
CATEGORY A: I bought a chair and have used it for years. I love the chair, it is comfortable and goes with my decor. The rest of the family loves the chair. A leg on the chair breaks. I take the chair to get repaired because I really like this chair and would like to keep it.
CATEGORY B: (Unmarried) - I am out shopping for a chair. I find one that I like but it has a broken leg. I do not buy it and I keep looking for a similar chair that is solid and intact. Even if the owner offered to repair the leg, I would probably not buy the chair for fear it would break again in the future.
(Recently married) - I buy a chair and as soon as I get it home the leg breaks. I return it to the store because it is not as represented - not solid - and therefore not what I was given the impression I was buying. Again, since it broke so easily, I would probably not accept an offer to repair, since I suspect this is proof the chair is badly made and will break again.
CATEGORY C: I have a chair which I have owned for years. It was never comfortable, always wobbled, and never matched my decor. My kids think it is hideous. The leg breaks and I discover it is riddled with termites. I have to get rid of the chair - and as I shop for a new one, I try to find one that is more comfortable and fits better in my home. (And I check for termites!!! )
Now, I know this is simplistic, and human beings are not chairs, but I think it can be a usefull way to look at things.
I like the analogy. 'Course, one of the ways I spend my time now is re-arranging the house, including the furniture, so it's right up my alley.
Borders doesn't have the book yet, but have you read Robinson's "Mars" trilogy? I think I may start on that while I wait for "The Years of Rice and Salt" to come back in stock.
Thanks,
Joe
My sitch More importantly, Light A Million Candles
LNL - Yes, I've often suspected that some of my weight gain coincided with my kids' schools schedules starting at 7:30 am!
Koshka - No, haven't read the Mars trilogy, but I think I bought it for my son - I'll have to check his bookshelf. I'm trying to find my copy of Rice and Salt for him to read (I think I gave it to him but it got lost in his book collection before he read it). He's starting a summer internship in the biomedical division of a Japanese nanotechnology firm which has a facility here. He'll be doing pretty routine work, helping to catalogue and refresh some cell lines, but it will be great for him to get some laboratory experience, and get a chance to check out what the industry is like. And it will broaden his work experience, which is always a good thing.
S19 came home all excited about his first day at his (paying) internship. They are teaching him how to culture cell lines - a basic skill that will be really useful to him in future bio research - and he likes the two women who are working with him.
He'll be doing pretty routine work, helping to catalogue and refresh some cell lines, but it will be great for him to get some laboratory experience, and get a chance to check out what the industry is like. And it will broaden his work experience, which is always a good thing.