Are you afraid your child will be a mass murderer?

[Josie]

There is no money in it for a doctor to tell you to change your diet and take vitamins.

I took my daughter with the stomach problems to doctors for years. They tried different medicines and did different tests, including the celiac test. They told me gluten wasn't her problem and kept me coming back.

When I did the other lab test on my own, they told me it wasn't reliable. They did not encourage me to try the diet to see if it helped even if they thought that wouldn't solve her problems.

Changing her diet meant she has no stomach problems any more. I don't go to them any more because I don't need to.

Some in the celiac community believe the doctors are deliberately not telling them about this because it would cut into their income. I choose to believe the doctors just don't know but it does seem the incentive isn't there for them to tell people. If word got out, many people wouldn't need them.

The same thing happened with the psychiatrist. Once I changed my other daughter's diet, she doesn't need the psychiatrist or the therapist.

I don't think you can rely on the fact that there would be so much money to be made that all the doctors would know about it.

The lab I used has a postive result for gluten sensitivity for 30% of the people off the street. That seems hard to believe for most people. But think of the implications for the medical profession if it is true. With a number that high, there really is no reason to even do the test, but just trying the diet would be more cost effective. There's really no money to be made by the doctors out of that.

 

[BusynMember]

I'm not sure I agree that doctors don't try to get one to change diet. I think most doctors do encourage it. Mine sure did. And if they don't, nothing stops us from changing it anyways, if we like. They also encouraged me to exercise, which has made a world of difference in my life. That doesn't make money for them. I think there are some things that doctors truly don't believe are valid. When that happens, and we as parents disagree, then it's our job to do research and see what WE believe and then try what we feel is worth the time, effort and money.

I'm not sure, but I don't believe the oldtime posters ever tell anyone to try just one thing or just one method. We know better . I think it's a good policy that we can't post doctor's names and institutions on the board too. I think most of us usually recommend intensive evaluations and go from there. Also, noted, there is a board for alternatives to medication. I think this entire site is wonderful and has a place for everyone to go.

 

[Katlin]

"I think what bothers me the most about this particular clinic is that the people who have talked to me about it (I am excluding this poster, who I have obviously NEVER talked to and don't know personally)--but the ones I did know talked about it like they were cult-like sold. It was pretty much as if they were the enlightened and if we all just knew what they knew and did what they did mental illness would be wiped off the face of the earth (yes, I'm exaggerating a bit)."



Midwest Mom, you are exaggerating a lot. No one, is beginning to claim this is going to wipe out mental illness. I reiterated over and over that my daughters condition is rare. The only claim I made is that my daughter was helped in the way that I stated previously. I also said over and over that they did not charge a lot of money and at the point, that I went there, I had spent a small fortune, without insurance, to find someone who could even give me an accurate diagnosis. Because she was helped in just the way I described, I know that they were right on, in both diagnosis and the treatment she received. The cost was minimal, and if the companies making the vitamins and minerals made a profit, I never expected, they were a public charity.
I also liked the idea that she did not have a four page list associated with the side effects you get with the drugs. This clinic, if anyone bothered to check, their link, does not make exaggerated claims. Their research is documented. They have been quietly helping people for many years.

I wrote the original post the other night when I was exhausted, with the desire to help others as we were helped. Perhaps I stated it badly, I doubt if I would do it again. I understand the cynicism. I would have felt it too. This post was to help others. I hope it does. If not, it might be because the naysayers tried so hard to shoot down any credibility it might have had. I can't help that. But if one child could have been helped, and because of the need to annihilate the message or the messenger, then that is truly a tragedy.

I agree with the advice on exercise. I am 65 and walk three miles a day with my GD who has ADHD. My difficult child would not have walked across the street with me. She was totally defiant in most things.

 

[Katlin]

Sorry, I promise to sign off on this discussion, after this post. I was thinking about two separate replies by Midwest Mom. In the first she said:

"Again, being the cynic, I know many people who did take their kids there because of all the magic promises they were given. None of their kids were miraculously helped. Not one."

In the second post she said,


"I think what bothers me the most about this particular clinic is that the people who have talked to me about it (I am excluding this poster, who I have obviously NEVER talked to and don't know personally)--but the ones I did know talked about it like they were cult-like sold. It was pretty much as if they were the enlightened and if we all just knew what they knew and did what they did mental illness would be wiped off the face of the earth (yes, I'm exaggerating a bit)."

Am I the only one who see's a direct contradiction here?

 

[BusynMember]

I don't have all the answers. Nobody does. I'm not sure why you are being so insistent and defensive??? That clinic has plenty of takers. Anyone who wants to go is free to go. At any rate, I'm hoping this doesn't turn into a hostile thread. I'm not going to get into it anymore.

 

[Marguerite]

This thread has raised some interesting points regarding complementary medicine vs more orthodox treatments. The suggestion has been made that doctos don't make money telling you to simpy changer your diet and take more vitamins, so people who could benefit from this often can spend a lot of time "in the wilderness" (my term).

The Aussie situation - I have found that it is generally the complementary medicine people who push the diet & vitamins approach who charge way above the schedule fee and who therefore are the onesmaking money. Not all, of course, and some conventioanl practitioners also charge way above schedule fee. (For background - all Australians qualify for Medicare which pays up to schedule fee for all accepted procedures and consultations; it pays 80% if the doctor bulk-bills which means patients don't pay a cent but the doctor misses out on a bit more of the fee in order to lure more customers).
There are two groups (mainly) working in the field of glutyen intolerance/food sensitivities. One group is the researxh group I mentioned - conservative medicine. In fact, the head researcher has been party to exposing and shutting down some of the raving loony mob (my earflier description). As a result, he is not popular in the complementary medicine field even though those who "play fair" with patients and the health care system are not in his sights.
The second group is the complementary medicine people. Some of them find gluten sensitivity under every bush. I've encountered one GP (and counselled a lot of his patients) who magically finds hypoglycemia in every patient that walks through his door. They leave clutching a little bottle of glycerin to sip at frequent intervals. He also advised his patients to avoid the support networks (including the one that, for a while, was sending patients to him and for which I worked as a counsellor). In other words, he was setting himself up as their only channel not only of information, but of support. No other way to be informed except through him. The advent of the Internet finished this practice off.

The thing is - here, despite te availability of 'free' health care for all, it is the doctors promoting gluten-free diets and vitamins who are making the most private money from desperate patients. There are others too, but the complementary medicine people in general charge more - and they get it. There's gold in them thar ills.

Of course there are reputable complementary prtactgitioners here too but they can be hard to find. They can also be overloaded with paitents - so you understgnad the temptation to charge more - what the market will bear.

So I don't feel that your doctors failing to help with gluten problems is a money thing - I think it's more likely to be scepticism, an unwillingness to consider it. Our doctors who treat gluten problems still have the patients coming back regularly for ongoing support and supervision, so they continue to make their money from them. The conventional ones as well as the complementary medicine ones.

The difficulty as I see it in the US (please correct me if I'm wrong) is that it costs you for each consult, plus patients are likely to wait until you're REALLY sick, if you don't carry enough insurance. PLusd conservatgive insurance companies can argue over whaty they will ocver, and complementary medicien is often left out in the cold. Doctors would thereforfe get wary of the easy fix plus the 'odd' fix, not wanting to suddenly find their fee cancelled by an over-cautious insurance company.

It does come down to the almighty dollar b ut perhaps not in the way you think.

Back to Katlin - I'm maybe being Devil's Advocate here but if I had been in her shoes and had recently advised a friend of something that had helped a child of mine, even some years ago, my thoughts might also wander to - who elsemight be interested in this information? I've just written this ins a letter, can I share it with someone else? The trigger int his case was soemthing Katlin pointed out to us, the letter to a friend. So I'm happy to take this at face value. And I DO think that we shouldalways be open to consider ALL possibilities to help our children.

However, remember what the research team told us concerning autism - in the case of autism, only 30% of patients were able to be helped by an appropriate, carefully worked out change in diet, and it was not a cure. But 30% is 30%, and sometimes any improvement can be a good beginning.

Just make sure that you check it out properly with reputable medicos and not the raving loonies (I gave you some of the diagnostic features of raving loonies in my earlier post). Also if you stumble across someone doing research - it's supposed to be free.

ALWAYS - keep yourself fully informed, read widely, become an expert in your own child.

From there on, the experience becomes very individual.

Marg

 

[Josie]

In my experience, there aren't doctors involved after you discover you have gluten intolerance. There is nothing to check. People with diagnosis'ed celiac disease sometimes get a test every year to monitor their compliance but since those tests didn't work for us in the first place, they would serve no purpose now.

Discovering an "alternative treatment" that works changed the way I look at things. Especially when I read that there is no evidence that it works. It does work for a lot of people. I don't know if the researcher's test will ever be validated by mainstream medicine but it has made a difference for a lot of people.

The "alternative" medicine practitioners that I have seen probably get less per hour than the mainstream doctors. It is more expensive to me because insurance doesn't reimburse the entire fee.

It is possible to be taken advantage of when you are seeking out of mainstream care. It is also possible you will get an answer. Again, you have to weigh the risks and costs of treatment with the possible outcome.

I don't consider that we are treating my daughter's mood problem with diet. I view it that she doesn't have a problem unless she eats gluten. That is eye opening to me and makes me wonder what else the natural practitioners know that is viewed with skepticism by the majority.

 

[Marguerite]

FOP, I'm glad you finally have something that helps your daughter, I'm sorry it was so difficult for you to access.

As I said to Katlin - have you had yourself and other family members considered for this? Thee degree to which this can help, IF it can help, varies from person to person. In your daughter's case it clearly makes a huge difference. I have a young friend who has severe coeliac, even eating a caramel set her off. But her mother and brother are now considering going gluten-free, although they have different issues that are less severe.

It made no difference to difficult child 3, but I'm strongly suspecting I have some issues with gluten. I know there are certain foods I must avoid or I get GI symptoms - rolled oats, for example.

It IS something people can try on their own but it should be accessible via conservative health practitioners, especially dietiticians and immunologists. I am glad when people get help; angry when it costs far more than it should simply because some doctor is making money out of other people's desperation. Of course, sometimes treatment DOES cost more if there is a degree of intense personal involvement for a while. That is different. It's the obvious moneymaking stuff that gets me angry because people's health shouldn't be used as bargaining chips.

Marg

 

[Josie]

Yes, we are all on it. difficult child 1's mood issues went away. difficult child 2's stomach aches went away. I had many things improve, some I didn't even know I had (ADD-like symptoms, depression, anxiety, brain fog, auditory processing problems, foot pain, fatigue). I now turn into a difficult child myself for weeks if I have even tiny amounts!

husband follows the diet but doesn't wory about tiny amounts and will eat whatever he has to when he travels for business. He has seen the least benefit but even he admits that he feels worse if he has too much.

All I've ever heard from regular doctors about the gluten free diet is that it is over-rated and "trendy". I don't even mention it to them because I don't want to see their eyes roll. LOL

Honestly, I don't think you should rely on a doctor or even a dietician to tell you about the details of the gluten free diet. They won't know unless they are on it themselves. There is just too much to learn about. If you decide to try it, the best place to go for information is www.glutenfreeforum.com.

 

[Marguerite]

The reason I mentioned dieticians, specialists etc is because the full-on elimination diet we had to go through (first with difficult child 1 then years later with difficult child 3 - different doctors each time) is so extreme that you are seriously malnourished while on it and a dietician needs to supervise to make sure you're doing it right and also not causing more long-term harm. Our dietician supervised the diet report and the behaviour report and said on the basis of all that, when to try the challenges and when to back off. We were supposed to only be on the full elimination diet until his symptoms subsided - but they never did. They wouldseem to subside then they wouold surface again and eventually we realised that there was no correlation with the diet, but there WAS a correlation with school attendance. It killed our involvement in the research trial and even after a while the dietician said, "We have no evidence that difficult child 3 has a food-related problem, I think it would be kinder to put him back on a nomral diet. Report to me if you have any sudden worsening, but I don't think you will. Call if you need us, but our team thinks you need to work on the anxiety issues in a different direction."

Then when I was put on a dangerously stgrict diet, again it was under strict medical supervision. It was that doctor who empowered me to cut things back as drastically as I did - which I needed to do, for the sake of my health. Without having him and his authority to refer to, I would have felt less able to withstand the criticism of family & friends who said I wasn't eating right. But despite not "eating right" I have turned around some serious health problems, exactly as my specialist predicted! It really made a big difference to me.

But that's in our system here. You need to do what works for you where you are and also to inform yourself fully. Then you have the best chance of success.

Marg

 

[susiestar]

I am sorry I stepped on toes when I said that there are no quick fixes. I have not ever thought of diet and lifestyle changes as "quick". They certainly have dramatic effects on us, especially after we figure out which foods help and which hurt. It is a long process to learn those things.

Maybe I think of them in a different category from "quick fixes" because it took me almost a year of food diaries and having my diet changed periodically to figure out what my problems with food are. I was working with a professor at the University I attended. He and a nutritionist and a medical doctor each saw me every week, and then every other week. I had to learn how to track my diet so that it could be put into the computer system (this was in 1989-1990) and analyzed.

We discovered that the levels of 2 nutrients drops dramatically as a migraine starts. Taking a supplement of those nutrients at that time doesn't help stop the migraine, but it can be taken when conditions are "right" for me to have a migraine. After a big stressor is over (like after the last final or midterm), after a fight with my parents or my roommate, etc... If I take the nutrients before it hits then I have a much milder migraine.

Fairly, I am amazed at the doctors you have seen. For the last 10+ years every doctor I have seen has asked me about my diet, any supplements I take, etc... The only test that wasn't run was the Vit D level. Mostly because I do not present the Vit D deficiency in a typical way. I have done the girlfriend/CF diets 3 times in 20 years, and done 2 rounds of elimination diets for other things. My doctors discuss nutrition and how it affects health almost every time I see them.

I am sorry your experiences have been different. I hope that you get doctors who are well informed on diet and nutrition issues at some time. I meant no offense.

 

[Josie]

Of course the doctors ask about regular nutrition. It is the gluten free thing they don't believe.

The gluten free diet isn't unhealthy and doesn't need close supervision. A full elimination diet or other more extreme diet is different.

In my experience, the difference between a mainstream doctor and an alternative one is the mainstream doctor will run the test (let's say for celiac disease) and if it is negative will say there is no problem. Or that the problem is anxiety or stress. An alternative doctor will say even though the test is negative, some people don't tolerate gluten well and mention the diet could be tried.

Another example that I know less about but have read in passing is thyroid. Apparently, there are doctors that believe the normal range needs to be different and will treat for thyroid problems before others. There are some happy patients that have felt better with this method. If I thought I had thyroid problems, I would investigate this further. I might end up going to a doctor that I knew treated thyroid problems this way. He probably would treat a lot of people that way because people would be going to him for that treatment.

That is an example of what I mean by doing your own research, listening to other people with similar conditions to see what works, and deciding what to do. If you don't do your own research, you might not even know that there are other possibilities.

It's possible I would be wrong but if the regular doctors don't know what is wrong or don't believe there is a problem and are offering no help, they could be wrong, too.

It took a long time to know for sure that gluten was causing my daughter's GI symptoms. That was really mostly my fault because I was suspicious right from the very first time I gave it to her. I should have gone with my mommy instinct and not let the doctors convince me I was wrong.

For my daughter with ODD and myself, the girlfriend diet was a quick fix. We did it and we could tell. I could tell in myself by the second day. I am probably going to have to do the total elimination diet for my other daughter to see what else might be happening with her. I am sure that will be a more painful process.

I am really just putting all of this out here because my family's experience with alternative doctors has been positive. I have gone to some that told me to do things that I haven't done and I've never gone back. Some of it sounded too far out there for even me (and especially husband) but some of it was I just didn't get organized enough to follow through, so I don't know if they would have helped or not. Most of the ones we have seen are MD's that also believe in alternative treatments.

The original post that started this thread is the kind of thing that would start my research. To just dismiss it because it sounds too good to be true or because it is alternative obviously saves money and time, but it might mean missing what could be an answer for someone.

 

[Katlin]

Katlin,
thank you for an intersting website link. So sorry about your daughter.
I am confused. Your note here sounds like she's doing very well, and all your troubles are behind you. But on another thread, you posted this:

Now, I can go crazy worrying about my dear grandchildren and frankly by this time I can't help thinking the unthinkable and that is that I shouldn't have struggled so hard to keep her alive back in the growing up years because now she may cause something to happen to her babies. The nightmare never ends. There is another thing. These last two children would have probably been taken away if it weren't for massive support from myself, the other GP and bio dad. I should have let that happen. If I get the chance I will let that happen. Please pray for my grandchildren. A little girl, age 8 and a tiny, sweet beautiful little boy age 6.

Did your daughter quit taking her medications and vitamins? Post more about her, please.
I was under the impression that once the chemical and mineral imbalances were corrected, her symptoms were gone, except for some control issues, which were taken care of with-medications. At first I thought that if I took my son to a place like the Pfizer clinic and cleanred out his system of heavy metals, our worries would be over for the rest of his life.
But your story makes me think your trip to Chicago was all a waste of time.
What am I missing?

My daughter is almost 29. She was never free of symptoms. She has a life long chemical imbalance. She was helped to the point of no longer being homicidal or having terrible tantrums. When she left home she stopped taking the vitamins and minerals which HELPED correct her chemical imbalance which was charactaerized by loss of and low levels of zinc. and other imbalances resulting from that. It gave us 6 years of relatively stable behaviour. This is a life long condition. It does not go away. Most of the mental/physiological illnesses do not. Without treatment/medication they return. As an adult she does have better control over her anger and those years she was able to stabilize her actions were useful in gaining self control within the perimeters of her imbalance.

The trip to Chicago may have been the reason she is free and not spending her life in a prison cell.

 

[Katlin]

After finally finding time to read some of your replies more thoroughly, I realized that everyone was not being hyper critical but were truly trying to understand and help, and everyone approaches this kind of information from where they are and what they have experienced.

I apologize for being "thin skinned". I thank you all for taking time to respond. I know that life with a gif does not leave a lot of free time. I am truly sorry for my angry replies. No one on my side of the family has the serious problems that my daughter does. On the paternal side there was an aunt to her father who set herself on fire, and nearly died. Was considered a "nut case" her entire life.

To those who mentioned diet, I totally agree that, that can be helpful in some cases. We are vegetarian, (eat lots of organic fruits, veggies, nuts, beans, smoothies, etc. We walk everywhere and I believe that is why my GD does not need medication for ADHD. Homeschooling also is a strong factor. My other daughter is a clinical dietitian in a hospital and we often discuss how doctors. don't necessarily know a lot about diet. Very little time is spent in medical school teaching this. Thank you all for attempting to add to this with your own hard earned wisdom. Good luck in the journey and I hope everyone finds the answers they need, in this difficult role we have been given as the parent of a gif.

 

[TerryJ2]

At the point when my husband went back to school to become a chiro (1981 I think), he was required to take 2 or 3 yrs of nutrition. MDs only took 1/4. Not even a full semester. I understand that now MDs take a lot more nutrition classes, but still not enough to fullly understand the interactions between food, supplements and pharmaceuticals, or about how allergies can affect behavior, for example.

I'm sorry about your great-aunt who set herself on fire. Horrid. Makes me wish I could go back in time and offer what little we have in regard to medications and therapy. Not perfect, but much better than it was at the turn of the century, or even WWII.

Great that you walk so much with-your GD. I have a client who is ADHD and he grew up in Zimbabwe during the war. He walked 10 miles to school every day. His mom was one smart lady!

When you have time, post about your animals on the watercooler. We love animal stories.

 

[Marguerite]

fairly, you said, "In my experience, the difference between a mainstream doctor and an alternative one is the mainstream doctor will run the test (let's say for celiac disease) and if it is negative will say there is no problem. Or that the problem is anxiety or stress. An alternative doctor will say even though the test is negative, some people don't tolerate gluten well and mention the diet could be tried."

There are more distinctions than this, but you make a good point. From what I recall, my coeliac test is 'normal' but the problems I have with oats in my diet definitely indicates that a gluten-free diet is gonig to be an improvement for me, at least as far as GI symptoms are concerned.

I think the differences here are cultural as well - the conservative diet clinic I mentioned are definitely a bastion of conventional medicine, yet would fully agree with you that just because the tests are negative, doesn't mean there isn't a potential gluten intolerance problem. So maybe in the US the differences are that simple, but not in Australia. Or maybe everywhere, it's more complex. One thing I have found in a lot of complementary medicine places that worries me - the tendency to get you coming and going, the circular logic that can trap you into being their patient. Or maybe that only happens here? A woman we encountered who was heavily promoting a diet consisting of juices only (freshly produced from her industrial-grade juicer) plus daily colonic irrigation, told me that I would need it because the GI tract gets sluggish and needs increasing chemical help to function. I replied that my GI tract performed well, I never had constipation. her reply - I didn't know how sick I really was, my GI tract must be so gunged up that the walls were smoothed out from layers of gunk that needed to be flushed out, and so it only SEEMED to be working normally. In other words, no matter how I answered, she had a reason as to why I should have, like her, daily colonics. In vain did I protest that if we were meant to have daily colonics we'd have been born with hoses implanted; if we were meant to live on freshly produced juice we'd be born with no teeth and a shorter digestive tract.

Katlin, sometimes we can find a connection in the family and sometimes not. It's always worth considering because we also need to keep it in mind when our children have children.
Example: I was the child of a mother with immune problems plus as a baby I had cows milk intolerance, so when I had my first baby I made sure she was not given anything with cows milk in it. Despite my vigilance and notes all over the baby's crib she was given a bottle of cows' milk formula while still in the hospital nursery which she promptly vomited back all over the nurse. However, she had no cows milk products for the next year. I was trying to pre-empt te problems I had had as a baby.
She is now 27 and has no allergies or sensitivities to speak of.
I did the same with the other kids - difficult child 3 developed an antibiotic allergy at 6 weeks old and has since developed another couple of allergies (a food colouring and another medication). easy child 2/difficult child 2 has developed a couple of unexplained allergy rashes at times, including one to a particular detergent (brand of bubble bath) while difficult child 1 is allergic to another detergent (washing up liquid). We change brands and have no problem.
I don't know for sure, but I beleive my early igilance kept the problems reduced. None of them have the quantity of allergies I had as a child, nor the quantity my mother had. I've gone on to develop many more allergies - I blame my rough start.

We can be careful and still find problems. But taking precautions at least gives your kids more chance.

We can give special diets a try, give vitamin supplements a try, and find maybe no difference - but then nothing has been lost. And you never know - you could find it helps.

The important thing is to try to do it with someone overseeing it to make sure you're not risking damage to your health (some ideas can be crackpot, I've heard some weird stuff such as the GP selling expensive bottles of glycerin to his patients at about 10 times the price for exactly the same bottle in the local pharmacy, all because he said they had hypoglycemia).

Don't hurt yourself, don't get ripped off. A reputable doctor will follow the Hippocratic Oath which starts with, "First, do no harm." But there are the raving loonies out there (my previous term) who seem to have thrown the Hippocratic Oath out with the bathwater. They now follow, "First, do no harm to your own bank balance."

Katlin, I find it funny that one of your kids became a dietician. Funny, because my eldest became an Occupational Therapist (OT). They seem to fall into the "fix it" mould that we as parents are in, for our problem children. But one thing I've noticed and I suspect you probably have too - the therapist your child becomes is a darn good one, with a broader perspective than most and a determination to really help people.

Not needing ADHD medications: something we were told with difficult child 1's new doctor - when they're adults, their need for medications plummets. They mostly need medications when learning how to adapt, and when needing to concentrate on studies. difficult child 1 needs medications at some level for other reasons, but the doctor is dropping his dosage. easy child 2/difficult child 2 has dropped herdosage back a long way except when studying. She takes half her old dose when at work; skips medications entirely on her days off.

I guess it shows - at no time do we stop learning or stop adapting.

Marg

 

[BusynMember]

I'm neither a big cheerleader of conventional medicine, alternative medicine, or anything medicine. But I'm going to tell you what bothers me about the alternative medicine places I know about. Of course, one is the price and the "gotcha coming back" AND the high cost of the supplements, which price out anyone not wealthy enough to go as insurance won't cover it.

The other, and I notice this especially in my autism group, is the ferver in which people believe in their remedies. The DAN doctor crowd really think that if you don't pay the money for a DAN doctor (who aren't doctors, by the way) you aren't helping your kid. About half of us go and about half don't. The ones that don't have to suffer hearing about DAN doctors ad nauseum even as we see no difference in their kids. If we saw great improvements, we'd all be going to DAN's. I think there is also a placebo effect in the minds of some (I am NOT referring to the original poster--I am talking about some NOT ALL parents in my autism group). They go to a DAN doctor and suddenly their child is miraculously better, but only they can see it. Call me skeptical.

I do what helps me and my son. If doing a rain dance would help us, I'd do it. If taking vitamins would change us, I'd do it (I have tried vitamins and ended up in ER for a Niacin reaction). I tried diets and they didn't work for me. I tried 'em from Feingold to gluten-free. Nothing. Nada. That doesn't mean they don't work for other people, but you have to sort of be your own best advocate and try things and then do what works best for you. And if something works, it's great to tell people about it. Once. They can try it or decide not to try it. It's up to them. I wish the DAN people would understand that we know about DAN doctors, are skeptical and see no improvements in their kids so we prefer our methods to help our children...and I wish they'd let it go at that. They almost sound like DAN is their religion. Those of us who see progress in our own kids with what we are doing understood them the first time. JMO

 

[Marguerite]

I do what helps me and my son.

Exactly. The naked chicken dance routine.

We have different things over here which are considered the "in" thing. And they change. It needn't be just autism, it can happen with any condition which makes you feel sufficiently desperate. There are 'fads" and some treatment regimes will come in fashion and then will disappear without fanfare months or years later. I've seen a lot of them.

Mind you, I'm still there hooking into any new research going around and giving it a go... but there has to be a good research protocol backing it or we won't touch it.

I also get nervous of zealots, whether in medical treatment, politics or religion. Basic psychology explains how zealots develop - and it bears out your concerns, MWM. It comes down to a person's investment in belief. The LESS the payback to the individual, the more they have to 'gee up' their beleif to justify their ongoing involvement in it. Otherwise they would have to admit to some private scepticism or even some degree of disbelief and then they would feel they had been made to look foolish. So instead you get the more intense and genuine 'belief' in what they are doing, to the extent of having to convince other people too. Because the more other people are convinced by your own belief, the more you feel confident that your belief is real after all 9and therefore you are justified in your belief).

I saw some film of a very interesting psychology experiment into this (I think it dated back to about the 60's or therabouts). Interesting, but scary too. However, also very freeing for me because the next time I met a medically oriented zealot, I felt empowered to walk away (and quietly research the info myself, without the hellfire and brimstone approach or the emotional blackmail).

However I stress - I don't get any sense of zealotry here from Katlin. It's just the existence of zealots in association with a lot of these sort of treatments makes a lot of us very nervous.

That doesn't mean we ignore new information; it just means that anything new gets read carefully, meticulously, and with large heaped spoonsful of salt. A bit more than a pinch for a lot of us.

Marg

 

[Josie]

I think if you do the research on what you are looking for or who is a good practioner, you can avoid some of that.

One of the reasons I haven't done too much with one doctor that I found is that he doesn't tell me when to come back. I went to him thinking he could help me figure out what supplements I should take that would be helpful for my condition. Sure, I have done the research but there are so many possibilities and I thought he could tell me what has worked for his patients instead of me floundering around trying 100 different supplements.

I hear about the successes with the girlfriend/CF diet mostly because I am in a celiac group where everyone is on the diet. I have a tendency to believe in it because it worked in my family with such astonishing success. (Disclaimer - If my daughter or I have any gluten and/or milk, it is pretty ugly and no one would call it a success. In my case, I am worse off than before.) It isn't a placebo effect. I never wanted to be on this diet and didn't even think I had problems before. I honestly don't think anyone would be on this diet if it didn't help them. It is too inconvenient.

My daughter probably wouldn't look any different to most people on the outside but trust me, there is a difference at home. Actually, when we first started it, three people told me that she looked more "relaxed". She didn't display her GFGish behaviour outside the house for the most part, so something in her expression had changed.

I know a person that took her son to a DAN doctor. This one is an actual doctor with an MD. He is the one that suggested the girlfriend/CF diet to her. She tried it thinking she needed to do it just so she would know it wasn't going to work but within 2 days he stopped crying constantly. That improved but he still didn't talk at all. Eventually, she took him back to the DAN doctor who asked her if she was giving him the supplements (purchased at a different place). She had not been giving them because it is difficult to give 12 supplements to a 3 year old so she started. Within a month, he started talking and quickly caught up to where he should be. I never saw this child before so I don't know what he looked like then but he looks NT to me. He was diagnosis'ed with autism. Yes, the supplements/talking could be a coincidence. She believes it is not, though.

Those of us who have seen natural methods work do have almost a religious fervor about it. If you want to see it, just tell us that diets/supplements don't work and it is a placebo effect.

 

[BusynMember]

Marg, ANYTHING that works for us gives us a sort of religious ferver . Paroxotine changed my miserable, steenken life!!! I LOVE IT...lol. On the other hand, I know it doesn't work for everyone or even most people and would never try to peddle it on others. I love getting new ideas and I look into all of them.

See, my son never had anger, rage, etc. to the extent that most of the DAN people's kids do. He was always making steady progress with interventions and, at this point in time, the only way anyone knows he's on the spectrum is if I tell them. He has come far. SO WHY KEEP YAPPING TO ME ABOUT DAN??? I don't want to change my approach since my son is so much better. And, face it, it's hard to get kids to comply to things like gluten-free diets and 100 pills a day, even if it does work. I'll bet most adults reject that, so what good is it? I'm trying more permanent fixes that have nothing to do with pills or vitamins. I'm glad I don't need to hope my son will continue all this as an adult. He is doing fine without having to worry about medication, vitamins, or eating gluten free. I'm happy. I go to the autism meetings to have my son see that other kids are "shy" (as he calls it) like him and to talk to my friends (all who are not DAN doctor believers).

But the DAN doctor fanatics, as we do call them, gravitate to us anyway to tell us how great they are. Sometimes I feel like I'm in the middle of somebody trying to talk me into a religious conversion with them though. I don't really get it. Even the DAN parents comment on how well L. is doing. He's #11 in his class academically (out of about 110 kids). He is still "quirky." DAN won't change that.

At any rate, I dismiss NOTHING at face value. I just happen to have known about the clinic the original poster was talking about because I lived right there. And I knew folks who went there who sounded like the DAN doctor crowd, yet to me their kids were still acting out, in trouble, and many eventually capitulated and also went on medication. The cost of the pills you have to buy at that clinic are way more than I could afford, yet if I saw great results in other kids I'd have used them (for ME, not my son--I'm the one who has the mood disorder).

My own rejection of this clininc does not mean it's a bad place that doesn't help anyone. It is simply my own decision, based on MY knowledge, to be VERY cynical of it's motives and outcome. Doesn't make me right. In my 55 years of bipolar (soon to be 56) and sixteen years of autism with my son I have learned to keep an ear out for anything new and promising and I never stop doing research. And, like everyone, I come to my own conclusions about what is helpful for my particular family and what is not. Then I discuss it with hub and we make joint decisions.

I have REALLY bad stomach problems, which I know I can control by not eating too many starches or junk food. If I stick to healthy eating, my stomach is fine. If I breech this even once, like pig out on a pizza, I get reflux and I have to take rantadine (think that's what it's called). It's very uncomfortable. I figured that out on my own. I believe some things we can do better than the "professionals"