Are you afraid your child will be a mass murderer?

Discussion in 'General Parenting' started by Katlin, Jul 18, 2009.

  1. Katlin

    Katlin New Member

    That was the title of a Phil Donohue show. For those to young to remember he was a wonderful post Oprah talk show host. I watched the show that day because that was a question that I had to consider with my 12 year old daughter. That was around 17 years ago.

    I periodically post about her in the hope of helping others who may be going through this nightmare and who instinctively know there children are not being helped and the experts haven't got a clue.

    The following is a letter I wrote yesterday to a parent coping with similar issues.

    "Diane, When you mentioned shopping in Sears with your children, it triggered a memory that happened with my bio. I had twins, a boy and a girl, and bio was 14 months younger. This was 27 years ago.

    We were shopping for Easter clothes. First store, short wait,. Bio was just 3 years old. Something insignificant triggered one of her way over the top tantrums, and she would swear like a sailor, bite, kick and scream. I walked out of the store, a very long walk with her doing this all the way out to the car. When I tell you she was born with her messed up brain, this is one example. Even a short trip to buy food was fraught with frequent outbursts. Since my ex was out of the picture, I dealt with this alone."

    My daughter is 29 years old now. I tell people that she was born with the serious issues she acted on daily. She was put in counseling in and out of school starting in kindergarten. She was diagnosed with every personality disorder out there. Borderline, schizoid, etc. She would have such severe tantrums that she would actually experience hair loss after six weeks or so and a rash would appear overnight. When she was just a baby, I knew that something was wrong when she would cry for hours when I tried to sit her down and do my work.

    When we went to one of the many therapists, Dr's. etc. they would look for past life events that had happened to her. No medication, helped and she was prescribed with many over the years.

    I knew she could not help her behaviour, and that something was inherently wrong.

    You probably don't remember the Phil Donohue show but they had guests from a clinic by Chicago and the name of that show was "Are you afraid your child will be a mass murderer" I watched that show and for the first time ever, I saw people who understood my daughter.

    I took her to their clinic, which was near Chicago. Naperville ILL.

    They have a picture of her taken that first day and she was 12 years old and looked like a crazy person. Her eyes and hair look wild. By that time, I was afraid we would not even get through the apt. without her having one of her classic tantrums. They treat children and adults for chemical imbalances. Elevated copper, zinc deficiencies etc. They do extensive blood work, test hair, do a very extensive history, etc. They are non profit and treat imbalances with vitamins and minerals as a prescription geared to the individual. The man who started this research was a pioneer and I can only say he saved my daughter and our family.

    Well, I bribed my daughter into taking her pills for the first two months and then she took them voluntarily because for the first time in her life she felt normal In fact she took them for the nest eight years without urging. There are no side effects. After having tantrums, which included death threats and attempts to stab with knifes, scissors, or any weapon at hand almost weekly, throughout her entire life. (We hid and locked up everything) this behaviour ended within three months. She never had another tantrum. She still had problems but the control was there. Empirically these probably saved her life and maybe ours.

    I am not saying your daughter is like mine. She may have a much less severe imbalance. It may be something else entirely. I am also saying that this therapy is not widely accepted or even known about, and I believe it is because the drug companies, the therapist and Dr's, would not find this treatment profitable. This is a quiet revolution but if you read the testimonials you may see your child described there. I and the rest of our family were impacted by her behaviour so much and I reach out whenever I can to help anyone else who has a child with a chemical imbalance which may not reach the level of hers but who can be helped in this simple and non toxic way. Please feel free to write or ask me any questions.

    It is so sad to know that this is easily treated but after being so misunderstood by so many doctors. (including U.of Michigan evaluation, two expensive private mental hospitals, many counselors, drugs of every kind, the answer was there but no one was able to help her before age 12 and much damage had already been done. Good luck, Katlin
    Lasted edited by : Jul 18, 2009
  2. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Is this an advertisement?
  3. TerryJ2

    TerryJ2 Well-Known Member

    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?
  4. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member


    I think it is a wonderful thing when we reach out to other parents who are suffering or in need. However, like Terry, I am also a bit bemused.

    You speak to taking your daughter to the clinic when she was 12 and she took the medications for the next 8 years. Yet you also post (over on the Parent Emeritus forum)about having custody of one of your daughter's three children.

    I am guessing that the letter has the intent to offer hope to this woman - it sounds, from your other posts, that your daughter, while helped with her violent outbursts, still remains a difficult child. I think we can relate to that. Often times, life with a difficult child is about give and take, balance and off balance, and bad versus not so bad!

    Note that I took out the link to the clinic as we do not share the proper names of doctors, clinics, hospitals, programs, etc., on this board - legal considerations and all that. However, should a member wish to find out the name of the clinic, the pm system on the board is a good alternative.

  5. flutterby

    flutterby Fly away!

    Actually, from the thread on PE, it sounds like the daughter is still prone to violent outbursts.

    I'm just confused by this whole thing.
  6. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Sorry to be a cynic (I'm a terrible cynic) but there is no easy fix for our kids and no hidden clinic that can fix them. If so, we'd all have gone there and all our kids would be fine. I'm not sure what's going on here, but my first thought was that this is some sort of advertisement for the place, which I know well from living near there at one time. I don't recall anyone who went there getting such miraculous results. Many were very angry and felt they'd wasted money.
  7. Katlin

    Katlin New Member

    Sorry, I did make it sound like a happily ever after story. If you read the last line where I say much damage had already been done, that is the truth. When I tell you she never had another tantrum, that is also the truth. This condition does not go away. The younger one gets help the better the chance that they will not be damaged by severely damaged self esteem, and and association with the dregs of society, which is what happens when you are crazy every day of your life. It is pretty much a life long problem. When she left home she could not longer pay for vitamins and follow up. As an adult she has periodically ask for me to keep paying but now I cannot. I wish I could. I tried to help her a couple of times but she didn't follow through. The tantrums did stop and have never resumed. The drinking, fighting with childrens father, etc making incredibly bad choices, in friends, losing jobs etc. are ongoing.

    She has never had a tantrum, never struck her children, and has rescued many animals. She graduated with a 4.0 from h.S. None of this would have happened without the interval of the years between 12 and 18. I an not trying to sell you on this. I am just telling you her story. You cannot imagine what her life was like up to the point she was helped by this clinic. When you have been through what she had, you are damaged by age 12. You cannot cure what she has. You can only maintain the right balance of chemicals in your body. I can't advocate in a great way. Go to their website. They do not need anyone to speak for them. Believe me, if you saw the children going through their doors and the amazing work they do you would understand. The ratio of violent criminals in double bind studies is very high with this condition.

    You know, I have nothing to gain here. I am just telling you our story, and maybe someone else. Take it as you will.
  8. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    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. I'm glad it worked for your daughter, but maybe it was something else that did it. And maybe it helps a few kids. But it certainly doesn't help all of them. It's not recognized by the medical world as a valid treatment, but it sure costs an arm and a leg. What are you gaining? I don't know you. Nobody does. Maybe you ARE gaining something--maybe you work there. Maybe you're just happy that your child did well. Either way, I know for a fact that it's not a miracle cure nor does it work for all kids, even very young ones. Sometimes just growing up helps, as it did with my son who did not go there.
  9. susiestar

    susiestar Roll With It

    Katlin, I am glad that your daughter was able to find help, even if it didn't last long. I cannot help but wonder if maybe finding a neuropsychologist who would do a complete battery of tests would have helped just as well, or even more. It isn't something anyone can ever really go back and find out.

    The sad truth is that there is never any "cure" or quick fix for our kids. Especially not in pill form. I remember when magnet therapy started to become popular to treat things like fibromyalgia and arthritis. You had to have a certain number of magnets in your clothes, your mattress, everywhere. You also had to eat "right", exercise, and take the right kinds of vitamins. When you compared results between those who used the mattress pad and made lifestyle changes to those who just make teh lifestyle changes, well, the magnet mattress pad was quickly shown to work more by the power of suggestion than anything else.

    These rounds of "personalized" vitamins and nutrients comes around every couple of years (if not more often). Each time it involves buying costly supplements with no proven track record for helping out kids.

    If it sounds too good to be true, it is. I am not sure you see progress in your child. It seems to me that she just changed the focus of her anger and mental illness. JMO.
  10. Josie

    Josie Active Member

    Well, I will disagree with there is never a quick fix for our kids. One of my kids has been "fixed" by changing her diet. When she doesn't stay on it, she is a different child. Maybe it isn't really a quick fix, because it does involve a lot of effort in cooking, etc.

    I can't say how she will end up, because she may not stay on her diet as an adult. I am convinced after three years of watching her though, that her food intolerances are the cause of her trouble. If she doesn't stay on it, I have serious concerns about what her life will be. How her life turns out doesn't change the fact that she has a gluten problem that caused her ODD in her early years.

    If we believe that a pharmaceutical pill can make a difference, why would we not believe a vitamin can make a difference if there is a deficiency?
  11. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Pills *don't* cure everything, even if they help.

    Honestly, if anyone said "take XXXXX maybe Prozac???" and you will not be mentally ill, then I'd blow raspberries at them. Pharmaceutical companies make a fortune and many times the pills we take don't help---and there is no promise of a cure. If there is, it's a fraud.

    Changing a child's diet, doesn't cost an arm and a leg. The place this lady is talking about is a very high priced alternative place that costs a mint and doesn't guarantee anything and, of course, isn't covered by insurance. in my opinion you have to tread carefully when it's going to bankrupt you and there is no proof of massive help. This place has been around since I was young and it still isn't curing most people. If it did, everyone would be using their technique and insurance would cover it. A lot of us are financially challenged, yet desperate to "cure" our kids. It is easy to get sucked into programs that promise a lot and don't deliver. And we're out a lot of money. A LOT.

    I believe a few kids get helped by dietary changes and supplements, but most don't. It's just not a simple fix. Our kids have a lot of stuff going on, and if there was a cure, we'd all know about it and the medical community would jump all over it to get their hand in the profit. JMO
    Last edited: Jul 18, 2009
  12. flutterby

    flutterby Fly away!

    The question for me is, how do you know what and who to trust? I have *major* issues with big pharma (and I have contacted all of my congressman with my concerns about those particular issues with the health care reform thing going on), but at the same time there is so much stuff just thrown out there that isn't evaluated and doesn't have definitive studies that have been duplicated.

    And this just doesn't only concern psychiatric issues. We've come so far in medicine that we expect doctors to have answers and treatments, but the truth is there is much more that we don't know than we do.
  13. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Well, I think we are grossly overmedicated. I think some psychiatrists throw way too many medications at kids--one for this, one for that, etc. and in my opinion that can make kids worse or dope them up, but kids can't really articulate how the drugs are making them feel. As an adult, I just go by what helps me. I don't trust miracle cures, hocus pocus medicine, hocus pocus dietary changes, etc. If it helps me, I do it. The medications I'm taking help me. I dont' analyze it. I also think my exercise routine helps me A LOT. I have tons of energy and pep and I'm going to be 56. I don't feel slowed down much AT ALL. I think five day a week exercise helps me stay positive and helps my medications keep working for me. But I've been on medications that made me feel lethargic and plain terrible--a whole laundry list of medications that I refused to keep taking or that landed me in the hospital due to side effects. If a dietary change or supplement helped ME I'd use it, but I wouldn't pay a fortune for vitamin treatment. I know people who have done that for their autistic kids. They are in my son's autism group. I have yet failed to see that their kids are more functional than those who don't believe those treatments do squat. My son is probably one of the biggest success stories and we didn't change his diet at all. We used interventions. I say, whatever works for you go for it. But if it's going to cost you your house, make sure there's a good chance it's REALLY going to do some good. I really don't trust anyone. I trust how I feel. As far as my son goes, I trust what has worked for him. And nothing else.Dunno if I made any sense :tongue:.
  14. Josie

    Josie Active Member

    Sadly, I have issues with big pharma and medicine the way it is currently practiced. (throw medications at symptoms with each doctor looking only at their part of the body, without looking for why the symptom is occurring.)

    I think you have to do your own research, including boards like this one where other patients tell their experience. Then weigh the risks and costs of treatment along with the potential help.

    I have always pursued the conventional mainstream treatment first, now researching to make sure I agree with what they are doing. When I wasn't getting any help there, I researched further online.

    I ended up solving my daughter's ODD while looking for the answer to my other daughter's stomach problems. I had taken difficult child 1 to psychiatrists and tdocs and difficult child 2 to GI docs and pediatricians. While looking on a celiac board, I found a lot of them used a lab (not accepted by mainstream medicine) and were happy with the results. So I tried the lab. All that was at risk was $$. Maybe the lab isn't legit and I could have just tried the diet without it but I am not sorry that I did it.

    I don't think there is any way to know for sure what to trust. Even the drugs with proven track records don't work for every one. There are risks to trying things but there are risks to doing nothing, too.

    I wish I could go back to the days where I just believed what the doctor told me without question. It is pretty scary to think that you can't necessarily trust the doctor.
    Last edited: Jul 18, 2009
  15. Star*

    Star* call 911

    The title of this post makes me wonder if there is a web site for parents of children of serial killers. I mean how do you cope when you are a parent of a kid who has done something like that?

    As to this particular topics question? Yes. I was afraid. Had we not done severe intervention with our son it's anyones guess what would have happened to him or someone else.
  16. Katlin

    Katlin New Member

    First I do not want to repeat everything I have already written. This treatment will not help everyone. They would never make that claim. Secondly, they would never want me as an advocate as I am way too ignorant to act as their spokesperson.

    I had never, up to that point and I have still not, to this day met anyone like my daughter. She was helped to the degree that the tantrums/meltdowns which characterized her behaviour from birth), ended when she began taking the vitamins and minerals specifically designed for her chemical imbalance. When she stopped 6 years later, she still had the imbalance. THERE IS NO CURE. Her life is still a nightmare. But the tantrums stopped. The death threats against her brother and sister stopped. No, I am not selling anything.. No I am not a paid advocate for those wonderful, hard working, dedicated people at that clinic. I have not seen them or spoken to them in many years. They do not charge an "arm and a leg". They are non profit and charge less than what I paid for a week at a psychiatric hospital.

    If you choose to dismiss everything I have said, it doesn't matter to me. I am just trying to find that rare person like my daughter who is suffering and might be helped as she was. That's it. Don't look for some sinister reason for this post. I don't claim to think everyone can be helped by this. The underlying reasons for brain disorders are as varied as all other types of disease. That's it.

    One last thing I have to say is that if I am telling you that we were helped and you deny the validity of that, it seems to me that you are saying that you are an expert to the degree that you have experienced our journey, and tried my daughters cure and found it to be useless. That seems like a rather arrogant stance to take on someone else's life..
  17. Marguerite

    Marguerite Active Member

    Katlin, you have started a very interesting discussion that does come round every so often.

    Here is an Aussie perspective - different, because here our health system is highly subsidised. However, we also do have private clinics which do charge an arm and a leg for sometimes questionable treatments. They are often one step ahead (if that) of our regulatory bodies. However, we also have approved public hospital clinics where accredited, peer-reviewed research on exactly this topic is going on.

    I've had experience with both, I've attended seminars with both, I've published articles by writers from both camps. And I tell you - the more the officialdom brakes are off, the more outrageous become some of the claims. Not only the diagnostic claims, but also some of the treatment claims. I won't list them here, some of them are just too gross.

    One specialist I had "sold" to me was in my opinion a raving loony. He was an idealist and may have been on to something for some people, however. He just tried to apply it to everybody, he would do every test possible on every person who walked through the door and finally our health care system said to him (as they say to many doctors) - "If you can't justify those tests you have ordered retrospectively, you will have to pay us back for all the tests you have ordered for the past two years."
    This unfortunately scares off some good but more balanced doctors from doing tests that ARE needed.

    Cost is the issue for us in the Aussie health care system. The national Medicare budget is blowing out. But there is still scope within the public hospital system (which while technically not "free" is bulk-billed and therefore paid for out of the Medicare levy in our taxes). Doctors and specialists who work in the public health system are employed on salary. They not only see patients, they do research through their clinics. The research HAS to be arranged through strict Ethics Committee channels as well as other scientific rules needing to be followed. Research has to be double-blinded, but before the double-blinded trials, we get the pilot study. That is when a doctor can say, "I think your child could be lacking certain minerals or vitamins, I want to find out and see if we can help." The pilot study also has to be approved and meet strict scientific controls, but there are good reasons for this - once they have demonstrated that their ideas are right (and this MUST be done scientifically) then they publish the results (brownie points for the specialist, not money) and then other specialists around the world can share in this knowledge.

    The raving loony I mentioned - he would customise treatment for his patients according to each person's individual measured deficits, then he would manage each case individually. He was never able to publish because he never wrote a decent research protocol that reputable journals would touch. It had nothing to do with drug companies - we have companies here who market herbal remedies who have done double-blinded studies - I actually took part in one but had to drop out because I developed a reaction to the treatment.
    I have other (conventional) specialists who openly recommend herbal treatments to a lot of their patients (for example, the urologist who tells his patients to take cranberry capsules).

    Now to this particular hospital clinic - it is in Sydney, it is overseen by an pediatric immunologist in conjunction with a dietician. There is another immunologist on board who actually has a reputation of shutting down the raving loonies. And Katlin, I'm not saying your daughter was treated by the raving loony sect - not at all. Only that because the raving loonies are out there, it makes it very difficult for the genuine helpers to really give the help they can without being attacked.

    Now this Sydney clinic were doing a research study into Pervasive Developmental Disorder (PDD) and the effect of modifying diet. difficult child 3 got referred there by our GP (standard approach) after I had heard about this mob through our local autism network.
    The procedure - we had to attend the clinic with the reports proving the diagnosis. Then we met with the pediatric immunologist there so she could comfirm the diagnosis for herself. After that we were handed over to the dieticians who went through the issues in detail with us. We were told that they had already demonstraed statistically that in about 30% of Pervasive Developmental Disorder (PDD) cases, changing diet (and in some cases replacing with supplements) brought about an improvement in behaviour.

    The procedure was onerous and it is difficult to explain here - I've tried a few times but it is just too complex. When I say "diet" or even "elimination diet" or "food sensitivity" people think I'm saying that if you put your child on a healthy, all-natural diet that will be all that it takes. It's not. it's far more than that and frankly, at times the child will not be eating a balanced diet at all, certainly not one that you would accept as healthy. But for this process, it is a necessary step in order to assess exactly which chemicals, including NATURAL ones, are possibly causing problems for your child.

    And only 30% could be helped - I found that interesting. But worth chasing after, especially as all it cost us was the petrol to drive there. They even gave us vouchers to pay for the parking station. The procedure was to be - ensure we had eliminated all possible problem chemicals (a long and detailed list) and then slowly reintroduce them. We had to monitor the behaviour with a detailed diary as well as list absolutely everything he ate, in detail. It took several months. After that, the double-blinded part of the study came in. We were given a box of capsules and when difficult child 3 was stable, we were to try each capsule in strict number order. The staff didn't know what was in each capsule and neither did we. Only the computer knew and the code was not to be broken until after we had completed the study. All we knew was that the full range of problem chemicals as well as placebos were in that range of capsules.

    At this point we parted company (on friendly terms) with the research - we were finding that even on the most restrictive diets, the problem behaviours (which at first had seemed to be responding) were in fact environmental in trigger - the nasty variable in our case was stress, especially stress from school attendance. It was a variable we were to take another six months to deal with.

    In other words - we were in te 70% of cases for whom this did not work.

    I have mentioned the name of this research team in the past but I am not doing so here. Anyone who wants to PM me so that can track their publications - feel free. Their research into diet is ongoing. They're not always working with autism.

    Currently the autism research we're following is through another research team who are trialling oxytocin to see if it helps with social skills and also possibly learning. We still haven't been told which of the two one-off nasal sprays difficult child 3 had, was the placebo and which was the oxytocin. But he has his suspicions, he felt he definitely performed a lot better with one than with another.
    On Friday we go back for the next phase of the trial - the month-long home-administered supply of oxytocin. Again, we will be given two supplies one after the other - one will be oxytocin, the other will be placebo (normal saline). We have to keep strict records of our observations and there are interviews to attend also.

    Research is how this sort of thing should be developed. The raving loony doctors do the "lick it and see methods" but then, so do researchers, intially. But from there it differs. ANY researcher can make an observation and say, "My, this is interesting!" but what turns it into research from there is the well-written proposal, the "Let's find out abouth this properly and remove as many variables as possible, we have to go slowly and carefully but it will be worth it because we will then be able to help a lot more people in the long run."

    Meanwhile the raving loonies say, "Wow, this is interesting! I really want to help people NOW, I'll just make a stab at it and over time we'll continue to perfect this for each individual. Of course we can't take the time to research it more meticulously, people have to be helped now!" I
    The problem with this approach is, you're never certain if people really ARE being helped by your treatment, or by your besdide manner, or by something else entirely random. Such doctors often don't have measures for success that make sense to others - I've known raving loonies who judge success by the number of people who don't return for further treatment. "They didn't come back, so I must have cured them."

    There are also those doctors in between, who discover something thet think will make them either rich, or saviours of mankind, preferably both. They jealously guard their knowledge and while they may do what passes for legitimate research, their increasing paranoia over not wanting to share their knowledge also often means they lack the independent peer review that such work needs, to be given legitimacy. And by lacking that peer review they can make some really stupid mistakes. 've seen these people presenting their findings at conference and they can't see what is wrong with rearranging their subjects AFTER the work is done, in order to keep fiddling the data until they can get statistically significant results. "Hmm, the results weren't significant enough. Maybe if we only look at data from those people under 40 years old, or weighing less than 90 Kg, and eliminate the data from those whose numbers are just too extreme, we can get the numbers to work out better. Then we need more controls to match these new groups we've created." Kiddies, it doesn't work that way.

    Such people (the raving loonies and also the fringe researchers) can also whip up public opinion in their favour by using their charisma and paranoia to fuel some fairly strenuous public opinion. I've been attacked by people who felt I was being hypercritical of their 'pet' researchers. All I was doing was trying to ensure proper peer review, proper processes in place in order for that research to be given legitimacy. But that particular research fell at the second post because they made the primary error of any scientist - they fell in love with their own theories and therefore would not allow comparisons or criticisms.

    Anywhere in the world, you should not have to pay to be part of a research study. In a lot of cases, you get paid. Or at least reimbursed expenses. Anyone who says that what they are doing is experimental, but who asks you to pay for it - run, don't walk, away. However, if you get the chancce to find out something that could help, give it serious consideration. You never know - this could be it! Just check it out thoroughly to make sure it will be safe, especially if you are making decisions on behalf of your child. In our case, I make sure that difficult child 3 is fully informed and has the final decision.

    Katlin, the treatment your daughter was put on sounds like it did wonderful things. I have no doubt that such treatments can work, for the right person. But they won't fix everything necessarily - as you yourself pointed out, a lot of damage had been done purely because she had reached that age with no help available, and there was the fallout from that; and also such treatments won't help every person - witness the food sensitivity study we were in, where we turned out to be in the majority who could not be helped by diet change. And even if we had been helped - difficult child 3 would still be autistic. It just would have made it easier to help him, that is all.

    We each do what we can. We love to read success stories but it is very important to make it clear (as I feel you did) that if anyone does not follow your path, it is our choice.
    I mention this because ths fringe loonies I mentioned above train their patients to use emotional blackmail on others, to boost more clients to their clinics. I wish I had a dollar for every time I was told, "Why are you so critical of Dr X? Don't you WANT to be well?"

    Unfortunately too many of us parents have also heard this with regards to our children and as a result, hackles are hypersensitive!

    I'm glad your daughter did so much better with the supplements. Have you had the children tested too? Or done your own quiet tests? And what about yourself? Such problems can be familial but not necessarily be expressed through the same symptoms. And also as I said - sometimes your approach needs to be multidisciplinary, and sometimes we have to accept that we've 'fixed' all we can, and have to weather the rest.

  18. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Marg, what a great post! Very interesting as always :tongue:.

    In the US, if something works everyone jumps in on the action because everything in health care is for profit. I hope that changes, but right now it's "Good, we can make a buck!"

    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). But obviously the doctors there have a pat speech they give the people as to why their kids are the way they are because they all gave me a similar speel. In the meantime, since most kids were on the autism spectrum, they insisted their kids were so much better yet the rest of us so no difference. And I knew my son was REALLY getting better, and everyone could see it. Of course, maybe their kids were better at home. I don't know if they were or not.

    At any rate, due to our health care system here, which I am hoping will become affordable to all, if these people who claim alternative cures were on the mark for most people, the medical community would swarm all over them. It's $$$$. Every time a new antdepressant comes out, the doctors start prescribing it in droves, rather than prescribing cheaper, older medications with good track records. Why? $$$. Doctors get kickbacks from the pharmaceutal companies. I'm sure they'd be happy to make similar deals with the companies who make these vitamins. And I'm sure the company who makes the vitamins is just as greedy as the pharmaceutal comanies. Ah, the good ole USA.

    So I've learned to stay away from high priced alternative "cures." I don't believe them. A psychiatrist may cost a fortune, but insurance covers it. Big difference. I'd rather be a gunia pig to something that I don't have to pay for than have some alternative place plough me with vitamins that I can probably order myself online, but that probably will break the bank. And in the end they most likely aren't the answer. My own belief, having a mental illness and an Autism Spectrum Disorders (ASD) son, is that diet and vitamins aren't the answer to our problems. Want to help your kid? Want something already found to help EVERYONE in the world? EXERCISE!!!! Whatever else your child is taking or whatever the intervention, exercise has been proven to boost mood. I swear by it and the cost is nothing.

    At any rate, thanks for all of your thoughts :D. I do believe the orginial poster is sincere, but I still don't trust the facility she took her daughter to. I love when a facility tells a parent, "Well, of course she's not cured. YOu brought her here too late." Ugh. Sorry, I don't buy it.
  19. Marguerite

    Marguerite Active Member

    It's the "cult-like sold" that I was referring to. It not only does a disservice to the person being sold this (because it also cuts them off form other possible alternative directions of help) but alsos the emotional blackmail pressure that can get applied to others.

    However - despite what you and I may feel about a particular clinic (you have this one, I have a couple in my mind which I have had similar experiences with) we do need to be careful because often they do actually help some people. That's the thing - they may throw treatment X at people with conditions ranging through the alphabet but for some people, it is a good fit and it helps.

    I have a close friend who was telling me that she was about to go see a certain clinic (the one I was referring to that doctored their research results for a conference I attended) and told me how much it was going to cost her. I had to find a way to tactfully tell her that perhaps a second opinion would be indicated (as well as ultimately cheaper). No matter how tempting, I was not going to say, "they're a mob of money-grubbing charlatans" because in fact some of them are idealistic and honest; unaware of the somewhat sharp practices of their colleagues rather than complicit. However, without bad-mouthing them I was able to persuade my friend to enquire elsewhere.

    And that really is how we should handle these things - by doing what these medical teams DON'T do and prooviding full access to the spectrum of valid medical information, spreading it out before people so they are able to make informed choices.

    The average person doesn't understand how research works - why should they? But the more our situation differs from the norm, the more we have to educate ourselves. Life isn't fair, we shouldn't have to know all this stuff, but there it is. I was lucky to be in a position to learn a lot and so I try to share it.

    Sometimes for scientific researchers, it's like being in politics. Science is a very anarchic profession, your colleagues are all there waiting to read what you publish and then trying to tear it to pieces; if your work doesn't stand up to scrutiny you can bet another researcher will expose it very quickly, and publicly too if there is personal glory in it. But that is how we make progress with knowledge. A morning sickness drug is invented, tested and put on the market. Not all countries release it at the same time because testing is not always completed in countries at the same time. But advance samples were given out in Australia, one particular obstetrician handed out lots of free samples to his patients, even while the drug was actually on the market in Germany.
    Then babies are born to the mothers who took the drug - babies born with no arms and sometimes no legs. Or arms like flippers - phocomelia. The doctor in Sydney who handed out free samples from the drug company notices a pattern at about the same time the doctors in Germany publish in the Lancet. The Aussie doctor writes to the Lancet requesting equal discovery rights since he claims he did write to the Lancet at about the same time the German doctors did, outlining his own findings. As a result, the Aussie doctor gets equal "finder's rights" and the kudos that goes along with it even though the Lancet can find no trace of his letter.

    Yers later that same doctor, now running a very large, highly publicised research foundation based on his reputation as the discoverer of the problems due to thalidomide, is exposed as someone who has fudged his research findings in order to have another morning sickness drug removed from the market. By this time the drug is gone and no other company has tried to market a morning sickness drug, because even after the scientific evidence has been discredited, juries are still awarding large settlements out of "benefit of the doubt" and pity. Out of court settlements killed the second, probably safe, drug. But the researcher's reputation was mud except for the few people who had been convinced (by the same zealot-creating methods) that he is a wonderful man being treated harshly.
    This was big news in Australia when it happened. I think it was even big in other parts of the world. I also had inside knowledge of this, I had a couple of years' advance info from the whistleblowers inside the labs talking to us about their concerns.

    I need to stress - the work on thalidomide was legitimate. Thalidomide does cause birth defects, although it is still valuable drug combating nausea as long as the pateint is NOT pregnant. But Debendox, the subsequent drug removed from the market - the research was badly flawed, there was actually no valid proof that it was a problem. It may have been a problem, or it may not have been. We will now never know for sure because a highly renowned scientist apparently insisted on results being faked.

    You never think that this sort of thing will happen. But again, because science is so anarchic, research must be published in peer-reviewed journals and then other scientists tear it to pieces. Any research that can stand up to that kind of scrutiny and be independently replicated, is finally considered valid. The Debendox research was published but nobody was able to duplicate the results. However, it was sufficient evidence to allow people to bring lawsuits. Hence the drug was withdrawn, to save money form more lawsuits. Benefit of te doubt, let's save money.

    That's why news of a possible breakthrough treatment for something can take decades to finally make it onto the market. And sometimes it just gets buried, because initial reports were too hasty or too optimistic.The doctors and clinics who announce their genius in the popular press are the ones to steer clear of - peer-reviewed journals frown on that sort of prior publicity, it is usually an indication of smoke and mirrors, nothing substantial existing underneath.

    Oh, the tales I could tell...

    I tihnk I'll have to put this all in the book.

    Last edited: Jul 19, 2009
  20. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member

    I've read all your posts with interest. I think fairly kinda sums it all up -

    This is why we are hear. The search for advice and support.

    Katin, I believe the reason some of our members are taking exception to your posts is timing. You joined our board back in 06, but this is the first time you posted regarding the program your difficult child attended. Your daughter is like 20 or 22 and, by your own words, no longer taking the supplements that made a difference from 12 to 18. We question why you are posting about the program now instead of when she was 12 or 13?

    A lot of us parents here are very cautious about claims of quick fixes. We have had to develop really thick skins as we are judged by family, friends, our church, our neighbors, or society at large, for the antics and behavior of our difficult children. If there were a magic pill, a single therapy, a miracle doctor, we would have been there!

    I also wanted to address the issue that Midwest brought up regarding everying jumping when something is found (or told) to work. I don't think it is because our healthcare system is for profit. I think it's all of us looking for that quick fix. Whether it be for the common cold, with those pills and nose things to lessen the duration, for arthritis, with pain pills that work all day, for bone health, with a pill that now works for a year, or a medication that could help a child with behavior or academic issues.

    We all want to feel our difficult children will be able to function in a somewhat typical manner whether we are here or not. At least that is my hope. I know that I for one would research anything that sounded promising. What I fear worst is leaving difficult child alone. Dieing early before I've been able to help him realize his potential.

    Whether we continue wtih the current healthcare system or go to socialized medicine or a combo of socialized/privatized (which I would favor, by the way), someone is always going to be making a profit! Granted those countries that have 100% socialized medication have a cap on the profit that can be made, but the docs still make a living and the pharm companies still make money so they can do research and pay top scientists and executives, etc. Somebody always will make a buck!

    I think it's most important for us to remember our diversity on this board. We are from all corners of the world, we have different educational backgrounds, we are from vastly different economic levels, religious beliefs and value systems. Just as we are so different, so are our kids.

    No two difficult children here are going to have their disabilities manifest in the same way. I think older members need to remember that it's very easy for us to have a success with our difficult children and then recommend that therapy, that type of doctor, that medication to every single new poster that shows up here.

    In my opinion, the greatest first gift to a new poster is support and understanding. I know that is why made this such a soft place to land for me.