For a very long time friends, co-workers, acquaintances and parents of my clients have wanted to know my opinion on whether or not they should vaccinate their children or not, especially for the MMR vaccine. For the most part my response has been that I was not comfortable telling someone to not get shots, but I didn’t see any harm on adjusting the schedule if that would make the family more comfortable. I’ve always made it clear that I do not in any way shape or fashion believe that any shot/vaccine caused my boys autism. They had signs of autism from the day they were born.
However, I was on the fence on whether mercury had anything to do with autism or not. This is a position very uncharacteristic for me, as I usually have an opinion. Like all parents who have children that have autism, I have read some of the books and articles that “explain” how mercury is the cause. So as people ask me about the mercury question I have retreated to the fence for several reasons. First, I grew up fishing in areas where the waters very near have higher than acceptable levels of mercury. We didn’t just fish [my family] went wade fishing (i.e. walking in the water while you fish), so the question in my mind was, is it possible that that my body had excessive exposure and that was the cause? In addition, mercury was probably present in my life more that many women my age. My father was a machinist. Machinist got cuts at work. It’s just something that happened. When he got a cut the infirmary sent him home with “black salve”, so when anyone in the house had any injury, especially a cut, we used the leftover black salve. As I learned mercury was an ingredient I wondered did my horrible clumsiness as a child cause me to be exposed to too much mercury through black salve. Also, for some reason, which I honestly don’t know, my family seemed to always have mercury to play with, which they did with bare hands. Added to this I know my husband also “played” with mercury as a kid. He remembers reading in Boy’s Life magazine how to clean pennies with mercury, which of course he had to try out. So as you can see I did have some exposure to mercury along the way. This in turn placed some doubt in my mind.
I had read enough about what the parents believe to know what was being taught in autism circles, but what about the scientific evidence? I kept hearing there was sixteen studies that proved vaccines had nothing to do with autism, where were they? I couldn’t find a list anywhere. The Today show ran a segment about it, but when I emailed and asked them to please send me the list of the studies, I got nothing. So I stayed firmly on the fence wondering how to resolve this issue in my mind…. Until the last couple of months.
As I do a lot, I bought several books from Amazon on autism, but this time I found one book that offered the other side of the autism controversy. I want to encourage anyone that gets that same question I get “what about the shots, do you think they cause autism” to read this book. It’s time for us to get the word out. Unequivocally, no, it does not. Please read: Autism’s False Prophets. It is time for the science to take a front seat. Yes, there are sixteen studies. Some of the studies are on autism and mercury and some on autism and MMR. Also available are the proceedings that removed Andrew Wakefield’s right to practice in England. It’s an interesting read. Page after page lists elements of Dr Wakefield’s study that did not have IRB approval, which in my opinion makes it null and void. After reading much of this document I must take the book by Paul Offitt, MD at face value simply because what he says matches what I have already read from those proceedings.
In the interesting keeping this short enough to read let me just list some things I found interesting:
• Dr Wakefield applied for a patent for a “safer measles vaccine” before he came out with his famous study then stated measles, mumps, and rubella should be given separately.
• When Dr Wakefield said he thought everyone should be vaccinated separately there were no individual vaccines available for measles, mumps, and rubella in his country
• Of the sixteen studies, none of them get 100% for study quality; however, Dr Wakefield’s study got 0%
• Many of those that have taken a stand and said vaccines are safe have been threatened
• Dr Wakefield accepted A LOT of money from the lawyer that was in charge of suing in regards to the MMR vaccine in England
• Five of the children in Dr Wakefield’s study were involved in that lawsuit before they were admitted to his study. This is clearly a conflict of interest.
• Many years ago, Thimerosal was shown to be safe in larger does than was present in any vaccine.
• Autism rates did not drop after thimerosal was removed from vaccines in California by law
• The viral load that several have stated was too much is actually much lower than it was when many of us were taking the polio vaccine
• Many of those involved in this controversy are associated with the law firms that are suing the government.
• One last point, during the trials, one of the scientists was asked to point blank deny that vaccines cause autism, but that is not how null hypothesis in research work. No matter how much you test the null hypothesis you can only say it is unlikely. Many have interpreted this to mean that even the scientist have doubts about the vaccines.
The most disappointing thing I discovered was how little the science has been discussed therefore only fueling the fires of this controversy by remaining silent. Let me encourage you that if you have the opportunity to talk to these families, please educate yourself on the scientific side of this subject.
Sunday, July 25, 2010
Supplement Use with the Disabled Individual
Families that have a member with a disability are looking for answers. They want to know what they can do to help this person they love. Most of them want to do this as naturally as possible without using a host of possible chemicals. It seems logical that if something went wrong with natural processes of conception or gestation to create this disability then something natural should be able to cure the problem or at least make it better, so they look at the possibility of supplements.
There is a wealth of information available through many sources. Some of those sources are anecdotal and some are peer reviewed. Anecdotal sources are those sources where results have been reported by the person taking the supplement or by the family members of the person taking the supplement. Peer-reviewed sources are those sources where researchers have followed scientific method, they’ve obtain approval to pursue this research by a board or committee that insures that the rights of those being researched have been protected, they’ve done research in a methodical way, they’ve written their results then submitted the article to be reviewed by their peers. This insures that any research from these sources has followed guidelines and generally, that nobody should be hurt from following the recommendations they make.
Families and individuals with disabilities have felt forsaken by the researchers. The research takes years that they frankly don’t have to give suggestions they needed years ago. For the researchers much of the underlying problem is money or lack of money. If the research will only benefit a few people then it’s extremely hard to get funds to undergo the research. In addition, research on many of the supplements will probably never be funded because there is no money to be made on the hind end of the study. Supplements like B6 or magnesium are available over the counter for a fairly cheap price. It’s problematic to convince someone to fund research if they will have no return after the study.
Families, who are affected by disabilities such as autism, started years ago, passing on information about supplements they had used then subsequently saw an improvement in their affected child. Other families were grateful. There was at least something they could try that wouldn’t break the bank. Scientists were skeptical. There are many problems with this approach from the scientific perspective. How did you measure improvement? What about the placebo effect? Could some of these supplements be harmful?
I once had the pleasure of talking directly to Bernard Rimland from the Autism Research Institute on the phone. He gave me some of the best advice I’ve ever received in that short 10 minute phone conversation. He encouraged me to make sure my children, who have autism, were really getting a benefit from the supplements I was using with them. His suggestion was simple. He said, “Tell nobody who doesn’t have to know.” This levels the playing field, so to speak. If the people around your child/person with disabilities are biased towards believing wholeheartedly the answer to all their problems is giving them a supplement, they will believe they see positive effects once they find out your child is on a supplement. If the person working with your child/person with disabilities believes that supplements are a waste of money then they not only are not going to see any progress they are going to see regression. If nobody knows, the parent is given the opportunity to come in later and ask open ended questions. For instance you’ve given your child a supplement that others have reported improve language then the parent can ask, “how do you think his language is lately?” This gives the person you’re asking the opportunity to give a more honest response.
As a parent, I used that method of determining how any alternative treatments I was using were affecting my boys. I found it interesting that anything that had the desired effects for one boy did not have the same effects for the other. You could literally draw a line down a piece of paper, write their names individually at the top then list the treatments with a benefit under each name. There was only one treatment that could be listed under both of their names.
I have many concerns about the many supplements that are being offered for individuals with disabilities. I’m concerned about the costs to the family and the possibility of toxicity. Some recommendations far exceed the tolerable upper limits set for those nutrients. Some nutrients don’t have a tolerable upper limit set, but that’s no guarantee. That may just mean that nobody has reached that upper limit or if they have then nobody realized the problem was caused by taking excessive amounts of a nutrient. The costs to the family can be financial. Some of the supplements are encouraging an intake that costs in excess of $200 per month. Usually, those companies encourage families to put everyone in the family on those supplement. Some of these companies are using very high pressure sales tactics. I’ve personally had people tell me, “If you aren’t doing “this” for your child then you aren’t doing everything humanly possible”. Of course, the underlying message is “bad parent, you aren’t doing enough for your child”. In addition, some of these companies have engaged in acquiring sponsors to pay for others supplements. This concerns me not only for the family that is going to use the supplement, but for the sponsor family as most of the sponsors I’ve been aware of are families that have recently had a tragic loss. I fear the supplement companies are taking advantage of the sponsor families and their current state of grief.
The costs to the family that concerns me the most is the social capital loss. Social capital is how connected you are to your family, friends, and community. It is your emotional safety net. Those around you get tired of the many treatments and gradually that may be their reason for disappearing from your life especially if the family has been recruited as a salesperson for the supplement company.
My advice to those who are considering using a supplement is to take Dr Rimland’s advice. If you are going to try a supplement, tell only those who need to know and then ask open-ended non-leading questions. If someone is giving you high pressure to buy a supplement then tell them you don’t feel you can make an informed choice under that kind of pressure. Watch closely for any signs of toxicity. Re-evaluate on a regular basis if this treatment is beneficial. Know the signs of toxicity for the nutrients you are taking. Finally, as you give yourself permission to start these supplements determine under what conditions you would be willing to stop.
Regularly, make an appointment with someone you trust. This can be a one of the professionals you deal or a friend. List to them all the pros and cons of your current treatment then ask them to honestly tell you what they hear you saying. Do they hear you saying you’re having some doubts? Do they hear you saying this has been a great benefit? Do they hear you saying this is having too much of a strain? Or do they hear you saying this is helping you get through the day?
Families have the right to try supplements or any treatment they feel will be beneficial. Many families have seen some good improvements using these supplements, including mine. However, they also have the right to all the information. Just because something is natural does not make it harmless. Proceed cautiously; keep an open mind to the possible benefits and pitfalls.
There is a wealth of information available through many sources. Some of those sources are anecdotal and some are peer reviewed. Anecdotal sources are those sources where results have been reported by the person taking the supplement or by the family members of the person taking the supplement. Peer-reviewed sources are those sources where researchers have followed scientific method, they’ve obtain approval to pursue this research by a board or committee that insures that the rights of those being researched have been protected, they’ve done research in a methodical way, they’ve written their results then submitted the article to be reviewed by their peers. This insures that any research from these sources has followed guidelines and generally, that nobody should be hurt from following the recommendations they make.
Families and individuals with disabilities have felt forsaken by the researchers. The research takes years that they frankly don’t have to give suggestions they needed years ago. For the researchers much of the underlying problem is money or lack of money. If the research will only benefit a few people then it’s extremely hard to get funds to undergo the research. In addition, research on many of the supplements will probably never be funded because there is no money to be made on the hind end of the study. Supplements like B6 or magnesium are available over the counter for a fairly cheap price. It’s problematic to convince someone to fund research if they will have no return after the study.
Families, who are affected by disabilities such as autism, started years ago, passing on information about supplements they had used then subsequently saw an improvement in their affected child. Other families were grateful. There was at least something they could try that wouldn’t break the bank. Scientists were skeptical. There are many problems with this approach from the scientific perspective. How did you measure improvement? What about the placebo effect? Could some of these supplements be harmful?
I once had the pleasure of talking directly to Bernard Rimland from the Autism Research Institute on the phone. He gave me some of the best advice I’ve ever received in that short 10 minute phone conversation. He encouraged me to make sure my children, who have autism, were really getting a benefit from the supplements I was using with them. His suggestion was simple. He said, “Tell nobody who doesn’t have to know.” This levels the playing field, so to speak. If the people around your child/person with disabilities are biased towards believing wholeheartedly the answer to all their problems is giving them a supplement, they will believe they see positive effects once they find out your child is on a supplement. If the person working with your child/person with disabilities believes that supplements are a waste of money then they not only are not going to see any progress they are going to see regression. If nobody knows, the parent is given the opportunity to come in later and ask open ended questions. For instance you’ve given your child a supplement that others have reported improve language then the parent can ask, “how do you think his language is lately?” This gives the person you’re asking the opportunity to give a more honest response.
As a parent, I used that method of determining how any alternative treatments I was using were affecting my boys. I found it interesting that anything that had the desired effects for one boy did not have the same effects for the other. You could literally draw a line down a piece of paper, write their names individually at the top then list the treatments with a benefit under each name. There was only one treatment that could be listed under both of their names.
I have many concerns about the many supplements that are being offered for individuals with disabilities. I’m concerned about the costs to the family and the possibility of toxicity. Some recommendations far exceed the tolerable upper limits set for those nutrients. Some nutrients don’t have a tolerable upper limit set, but that’s no guarantee. That may just mean that nobody has reached that upper limit or if they have then nobody realized the problem was caused by taking excessive amounts of a nutrient. The costs to the family can be financial. Some of the supplements are encouraging an intake that costs in excess of $200 per month. Usually, those companies encourage families to put everyone in the family on those supplement. Some of these companies are using very high pressure sales tactics. I’ve personally had people tell me, “If you aren’t doing “this” for your child then you aren’t doing everything humanly possible”. Of course, the underlying message is “bad parent, you aren’t doing enough for your child”. In addition, some of these companies have engaged in acquiring sponsors to pay for others supplements. This concerns me not only for the family that is going to use the supplement, but for the sponsor family as most of the sponsors I’ve been aware of are families that have recently had a tragic loss. I fear the supplement companies are taking advantage of the sponsor families and their current state of grief.
The costs to the family that concerns me the most is the social capital loss. Social capital is how connected you are to your family, friends, and community. It is your emotional safety net. Those around you get tired of the many treatments and gradually that may be their reason for disappearing from your life especially if the family has been recruited as a salesperson for the supplement company.
My advice to those who are considering using a supplement is to take Dr Rimland’s advice. If you are going to try a supplement, tell only those who need to know and then ask open-ended non-leading questions. If someone is giving you high pressure to buy a supplement then tell them you don’t feel you can make an informed choice under that kind of pressure. Watch closely for any signs of toxicity. Re-evaluate on a regular basis if this treatment is beneficial. Know the signs of toxicity for the nutrients you are taking. Finally, as you give yourself permission to start these supplements determine under what conditions you would be willing to stop.
Regularly, make an appointment with someone you trust. This can be a one of the professionals you deal or a friend. List to them all the pros and cons of your current treatment then ask them to honestly tell you what they hear you saying. Do they hear you saying you’re having some doubts? Do they hear you saying this has been a great benefit? Do they hear you saying this is having too much of a strain? Or do they hear you saying this is helping you get through the day?
Families have the right to try supplements or any treatment they feel will be beneficial. Many families have seen some good improvements using these supplements, including mine. However, they also have the right to all the information. Just because something is natural does not make it harmless. Proceed cautiously; keep an open mind to the possible benefits and pitfalls.
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