where do you get your most trusted info?

[FMmom]

Who do you turn to for advice? What is your best source of information?

Do you believe the pediatrician? The specialist? A nutritionist? A blog? A forum? Or do you take little bits from everywhere and go with your gut instinct?

I have the two competing interests: getting Kaelin to gain weight (the without-a-doubt, number one thing as far as the doctors are concerned) and withholding foods that aggravate Kaelin's stomach. It is an either/or proposition; I cannot do both at the same time. So I find myself searching the internet constantly, looking for the magic solution (although I still believe that Lucky's suggestion of CSID is the ONLY thing that makes sense...)

The more I read about FM, the more confused I get. I swear that about half the information floating around is just downright wrong.

I still get a daily newsletter from a FM forum. It's mostly adults and their condition just doesn't seem to match up to Kaelin's symptoms so I don't go there often. However, in the email highlights, I've seen someone who posts her "Elimination Diet" suggestions each and every time a newbie posts. So, I finally clicked on because I thought that maybe there are some helpful suggestions there...

OMG

On an elimination diet -- you know, the diet where you get rid of ALL suspect food, then add back slowly -- she suggests things like oatmeal, potatoes, fried rice (um, lots of soy sauce in that), Kool-aid, ice pops, meringues, bacon made with sugar or maple syrup...

Now, from everything I read, there are a lot of people who can handle oatmeal, soy products, potatoes, and some small amount of sugar. But there are a ton of people who can't. And even for those that can, this was a list of a "daily food plan". That's a lot of processed sugar over the course of a day. That looks to me like a diet for someone with mild FM symptoms. Absolutely not the place where someone should start a diet.

Sigh. I know that I'm struggling because Kaelin doesn't fall into any easy category -- but I find so much contradictory information that I just want to scream.

So who/what do you trust for good information? Or is everyone doing the same trial and error -- and hoping for a good outcome?

[Charlie Arnold]

Unfortunately alot of it is trial and error and sticking to your instincts. So little is known medically about these conditions and everyone seems to have such different levels of tolerance that it makes it quite a minefield. At our recent multispecialist and school meeting about Megan the pediatrician said she has a fructose intolerance which means she can't eat fruit............

From what I can gather those that develop FM in adulthood are suffering a completely different condition and have much higher level of tolerances than those that display symptoms as an infant and in time, as I have said before, they may decide there is an interim problem between FM and HFI that these kids have. Or do they have CSID, certainly that condition makes sense for both Kaelin and Megs, we just have to wait for more answers there. We are due to see the metabolic specialist in July so I shall push more about it then. I went on the NORD website and looked up their info on it and grains can be an issue but how to eliminate them with all the other restrictions.

But yes, in response to your other point there is so much mis-information out there, but that maybe because of the different tolerance levels or understanding about FM.

The best answer for these kids especially and any newly diagnosed is to keep it simple, keep it plain and as low fructose as possible to start, wait at least 4 months then start slowly reintroducing. And if you are fortunate enough to have a dietitian experienced in this condition then pass them on......!!!!!