Andrew’s Mommy (& Others)
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I wonder if you would answer a question for me if you can? I love your posts, and those of many others here, because you seem open-minded and well balanced as well as being physician trained. My 2 year old grandson is PDD-NOS and doing remarkably well. He sees a Dan doctor as well as getting ABA and some other therapies. He's speaking beautifully in full sentences. He seems to have a bitr of trouble with eye contact and socialization. The eye contact when he is comfortable is very good though. His DAN doc ordered some tests and it seems he has high levels of mercury and lead. He also has gut issues that Dr. Krigsman is taking very good care of and he is doing well there too. He is on Methyl B12 for the past year. Anyway, what concerns me is that the DAN doc wants to do a chelation challenge and is talking about a few drugs. They are Actos, secretin and naltrexalone. It scares me. My daughter does an incredible amount of research and she hasn't said she is going to do this yet. But, I'm wondering if you have any feelings about thesse drugs. Thanks Andrew's mom and I'm sorry I rambled a bit here.
bump for AndrewsMommy. I know you don't want my opinion, but here it is anyways :) Mainstream pediatricians won't even consider chelation for lead unless the level is > 44 microg/dl in the blood, meaning a large, fairly recent exposure. That's a LOT of lead. I lived in a house that was built in 1876 and my son had to have his lead levels checked every six months (normal practice in NH) for lead levels and his blood lead level never exceeded 3 microg/dl. This is in a house that was FULL of lead paint, dust, etc. and he was a toddler. That 3 migrog/dl was about the same amount that he was born with, btw, as he was tested very young to get a baseline. The doctors don't even get concerned until the level is above 10 and again, won't consider chelating until the level is very high. Mainstream medicine considers these drugs to carry risk (I know they are generally considered safe by those who promote chelation). As far as the mercury, as I'm sure you know, there is not settled, reliable way to get a mercury level unless the exposure was recent. The DDI test are especially suspect, imo, because at least one of the tests compares a provoked sample with an unprovoked reference range, causing the child's sample to appear much higher than it really is (if it were compared to a challenged reference range, surely it wouldn't appear so high relative to the reference range). WHY WOULD THEY DO THAT? Also, as you know everyone has these elemements present in their bodies. It's not unexpected that a child who's been given a chelator will excrete these elements, and comaparing the challanged levels to a non-challenged reference seems dubious, at best. The hair test, well, you know the answer there. If the level's above normal then there's been an exposure and chelation is called for. If the level's below normal, then the child is a "poor excretor (sp?)" (nevermind that humans don't "excrete" anything via the hair - the hair just passively picks up whatever's in the blood, so think about why a low level would indicate anything) and chelation is called for. If the levels is exactly normal? Dunno what they'd say about that. So, kind of hard to win with this one. The urine poryphin test is theoretical and based on recent research. It is not settled fact that poryphin levels indicate mercury exposure (studies do show that mercury exposure does cause these to become elevated, but it does not show that elevated means exposure happened). Also, be aware that they measure elements in urine as a ratio to other co-occuring compounds or elements. They do this because the concentration of the various elements and compounds in urine varies over time (and alternative would be to do a 24 hour collection, but I don't know if this is generally recommend or no). So, whatever substance is being used in the denominator can skew the results if it is low. I think they use creatine levels as the denominator for checking the poryphines, and know that research has shown that kids with PDDs often have lower than normal creatine levels, which could skew the results (making the poryphins seem high by comparison). I've been assured that the level of creatine is taken into account with these tests, so this might not be an issue, but again, it's something that could trip up someone that doesn't know what they're looking at. This is not settled science. Anyway, since I don't know how they've determined that he's got high mercury levels, I'll stop, but my point is, none of the tests are considered by mainstream medicine to be a reliable assessment of actual mercury exposure. And of course, the only reason they are even looking for mercury is because of the belief that thimesol contributes to autism, which is a hypothesis itself. How much thimerosol could a 2 year old have receieved? I know, there shifting now to exposure via "the environment", but I woudl doubt that a 2 year olds been injected with any thimerasol unless it was from a flu vaccine, and even then, we're talking about the mercury content of a tuna fish sandwhich. Know that recent studies have shown that a certain popular chelation drug seems to increase cognative function in lab rats that have real lead poisoning but the study also found that non-lead poisned rats from the control group experienced cognative DECLINE! Not saying that rats are humans, but that scares me just a bit. My point is, these drugs are considered to carry risk and there use in treating autism is experimental. If I had a two year old speaking beautifully and in full sentences, there's not way I'd subject him to chelation other other things (Secretin? Huh? I thought that was settled) - for what, poor eye contact, social skills? Sounds like he is doing great. Kuddos to the folks that are working with him on a day-to-day basis. Anyway, I'm sure this Krigsman guy has his patients best interest at heart and is sincere, but I would seriously get a second opinion from a mainstream neurologist before doing any of this stuff. I mean, what harm would there be in getting a second opinion from a mainstream specialist before embarking risky, experimental treatments on a young child who is doing remarkably well (unless she just doesn't want to hear the answer that they are likely to give)? JMHO, and AndrewsMommy is a doctor and I'm just a dad, so keep that in mind. Hi Just a Dad (Fred). He had the poryphin test. I so appreciate your answer because now I know so much more about these tests. I don't like to question my daughter too much as I'm just happy she shares as much with me as she does and I don't want to make her keep defending her decisions. Lots of times she says she is going to do something with her son and then I find out she didn't do it and usually she tells me she researched it and just wasn't comfortable. Honestly I am just as uncomfortable about these unproven treatments as you are. But I'm just a gramma. BTW, my DD got a flu shot when she was 6 months pregnant with him and he received one when he was about 9 months old. I thought I had read that the flu vax has an outrageous amount of vaccine for a little tot, but I could be remembering incorrectly. Anyway, thank yo so much for your well thought out post, it really helped me.
You're a good gramma :) My post was a long way of saying, these tests as well as these treatments are experimental and the treatments do carry risk (and not all of the long term affects have been studies) and this child is doing very well. If anything, urge her to get a second opinion from a recognized expert in the field. No harm in that :) Fred,What an amazing reply. You are clearly SO informed about this type of testing. I am so impressed. I would like to save your response to share with other parents who ask me questions about testing for mercury, etc., if you don't mind. Thanks, but seriously, I'm not that informed. I'm sure LittleByrd, AndrewsMommy and some others could shred me on this stuff. My only message and my only reason for responding to these posts is simply to point out the one irrefutable fact: these treatments are experimental and the tests that are run out of these mail order labs are questionable and that these treatments do have risks. I may be completely wrong, and I'd hate to dissaude anyone from seeking treatment for a real medical problem. I just want people to do their research, get second opinions from mainstream doctors (whether the consider the second opinion is their choice), and not take anyone's word for anything. I think parents sometimes get the impression that all of these DAN! approaches are based on settled science and aren't aware that they are submitting their children to experiemental treatments based on questionable lab tests. I do agree that research needs to be done...not just from papers, but from other parents who have done it in treating their children's health issues. I assume that since he has been on mb-12 for over a year, that he has been treated by Kringsman for over a year. Has Kringsman run tests that determined his glutathione and cystien levels (lets them know how well the body is eliminating toxins). Has he done the urine porphyrins & the pterin...both from the french lab? Has he done an oxidative stress test? All of these and others are used to determine what the child's problems are. For instance, my dd has had extremely low glutathione since we started 2 yrs ago. We have done everything possible to increase the levels, however part of the problem is that she still has a bit of heavy metal, particularly mercury and lead. Mercury impairs the methylation cycle in the body and can cause the body to produce less glutathione. It is a horrible cycle and the only way to fix it is to supplement, treat her body inflammation and remove the metals. Chelation can be scary and it can be dangerous if not done correctly. However, it can really help a child that is toxic. Both of my children (almost 5 yrs and 3 yrs) get DMSA suppositories. Neither have really had any side effects, except gains. Not just in their behavior, but in their labs. One of the reasons for doing a chelation challenge is to determine if the chelating agent they are using is effective enough in pulling metals from the child. Each child has different health issues and metal toxicity so you have to select the right chelating agent based on that info. If he does one round and nothing really comes out, then a month or two later, you can do another chelation challenge with another chelating agent. I imagine that if Dr. K has treated him this long and is recommending chelation, he believes that your grandson is ready, physically and emotionally. We didn't start chelating until 7-8 mos after starting with a DAN. As for Actos, both of my kids have been on it each for about a year. We saw tremendous improvement in both...much like the improvements we witnessed when they first started on mb-12. Actos is a drug for diabetics. It helps reduce the inflammation around the cells so that the cells can absorb the insulin. It is an antiinflammatory. That is what it is being used for here. I can say that my childrens' guts became less inflammed and their stools improved as well. We ended up switching them to spironolactone because it has a good track records of use with children and it has some benefits to the immune system. We also used LDN (low dose naltextrone) on each child...for about 4 mos and 6 mos. Did not see any improvement. But if you research it, it is being used for patients w/ MS and other autoimmune issues. My daughter had not positive or negatives with it. My son became hyper and couldn't sleep at night. Hope that helps. Jennifer
[QUOTE=GrammaSusie] I wonder if you would answer a question for me if you can? I love your posts, and those of many others here, because you seem open-minded and well balanced as well as being physician trained. My 2 year old grandson is PDD-NOS and doing remarkably well. He sees a Dan doctor as well as getting ABA and some other therapies. He's speaking beautifully in full sentences. He seems to have a bitr of trouble with eye contact and socialization. The eye contact when he is comfortable is very good though. His DAN doc ordered some tests and it seems he has high levels of mercury and lead. He also has gut issues that Dr. Krigsman is taking very good care of and he is doing well there too. He is on Methyl B12 for the past year. Anyway, what concerns me is that the DAN doc wants to do a chelation challenge and is talking about a few drugs. They are Actos, secretin and naltrexalone. It scares me. My daughter does an incredible amount of research and she hasn't said she is going to do this yet. But, I'm wondering if you have any feelings about thesse drugs. Thanks Andrew's mom and I'm sorry I rambled a bit here.
[/QUOTE] Okay...I'm here now! Good thread so far, thank you, Fred! I must admit that I am not at the chelation point with Andrew yet, although we are going to do the urinary porphyrins test for heavy metals. Therefore, my research in this area is less than in others. First, secretin...I have been reading about this for about 4 years now. Initially, it showed alot of promise by some of the docs that I am calling "trailblazers" (in the POSITIVE sense). However, at best it seems to help maybe 10-20% of children on the spectrum, and the IV form may work best. Frankly, the idea of IV chelation, other than for definite lead poisoning for example, makes this family doc, ME, a little nervous. Nevertheless, if there is good scientific based reasoning that in your grandchild's case it may help even if the reasoning is theoretical then your daughter may be considering it...I don't, at this point anyway, see it in Andrew's future. Second, Naltrexone...I don't fully understand the physiologic theory behind using this (it's used for the immune system I believe), so I'm not able to further comment at this time. I can say that this drug is conventionally used to treat alcohol dependence in patients who are able to abstain from alcohol in the outpatient setting = not in the hospital. It is an opioid antagonist. If you're wondering how on earth some of these treatment ideas were derived, read the book, "Children With Starving Brains", by Dr.McCandless. (I recommend that you read it anyway so that you have an idea about where your daughter is coming from.) Third, Actos...All I know is that this is a medication that treats type II diabetes. I know that it is used for treating ASD in some cases, but I don't know why. QUESTION FOR FRED...Do you think that if you were in a position such that your girls were severely affected and unable to function alot of the time and were having many tantrums AND that in spite of aggressive ABA and/or other treatments that you were comfortable doing, there was minimal to no improvement after 1 or 2 years, that you would start aggressively researching DAN! protocols and scientific theories even if it meant going against some of your core beliefs or opinions??? Obviously, I made that question close to a worst case scenario, but I'm wondering at what point the scientific minded among us will "cross into" unknown territory for the potential benefit that it may give our children. I live on both sides of the fence, but as time goes by, I am , more open to the alternative or "unproven" side... [QUOTE=AndrewsMommy]QUESTION FOR FRED...Do you think that if you were in a position such that your girls were severely affected and unable to function alot of the time and were having many tantrums AND that in spite of aggressive ABA and/or other treatments that you were comfortable doing, there was minimal to no improvement after 1 or 2 years, that you would start aggressively researching DAN! protocols and scientific theories even if it meant going against some of your core beliefs or opinions??? Obviously, I made that question close to a worst case scenario, but I'm wondering at what point the scientific minded among us will "cross into" unknown territory for the potential benefit that it may give our children. I live on both sides of the fence, but as time goes by, I am , more open to the alternative or "unproven" side... [/QUOTE] I think if they were deteriorating instead of improving and if their quality of life was poor I would be more open to explore alternative theories, yes. I'm pretty sure I'd never go to see one of these well known DAN! doctors. I'd probably enroll in clinical trials being conducted by well-known and respected institutions for autism treatments and I'd seek specialists that could help with any co-morbid medical conditions.
Good answer, Fred! I just want to remind you though that DAN! originally started with a group of docs from all over who got together to share information and ideas with each other, several of them having children with autism themselves. They were trying to figure out how to best approach and treat children with autism as they were seeing more and more and more of them, and there wasn't any help from the conventional medical community (other than "incurable", "institutionalize", "refridgerator mothers" etc.). It wasn't originally about the almighty dollar, and in hopefully most cases now is not about $$$ either...If the official medical establishment had done this a long time ago, then perhaps we wouldn't be in such a predicament! Yes, Lovaas did the research in California, and helped some children, which eventually evolved into today's ABA, but why wasn't more done??? Wish we had more answers! It's a pleasure being on the boards with you! Don't get me started on Lovaas' paper I know what you mean! Trust me! But I felt it needed to be acknowledged in that post... You guys are just the greatest. Thanks to all of you for this discussion. Little Byrd, Dr. Hrigsman is the gastro who is treating my grandson. Dr. Neubrander is his DAN doc. So he is the one who orders the tests. They did the porphrin French lab thingy. And my DD mentioned an oxidative stress test yesterday that needs to be done. Other than that, I can't answer any questions becauwe I just don't know. Maybe I can convince her to come over here and answer your questions. I'm going to tell her about this thread. I'd like her to see your responses. Thanks again everyone. And thanks for the compliment Fred. I try to be the best gramma I can be. I adore these little grandchildren of mine. And like you, I just want them to be healthy and happy. Its really nice seeing a grandma here who understands their grandchildren. Having a two year old speaking beautifully and in full sentences, , poor eye contact, social skills is not a big worry especially at this age. Speaking perfect at this age is great! Sounds like he is doing awesome!!! |
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