chelation related death?
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saw this today, don't know if it's posted anywhere else on the board. http://www.msnbc.msn.com/id/9074208 can not tell you how sad this makes me feel. there are people out there that have no conscience and will prey on your great need to cure your child. please check out any therapies for your children carefully. i hope they will hold that doctor accountable. Very sad.Chelation is extremely risky stuff. I don't know why people don't believe the scientific community when they say that there is no cure for autism! Maybe one day... but not right now. And please go to this site too: http://www.msnbc.msn.com/id/8243264/ Take care, Jo. Wow. That is really a sad story. So glad I am not even going to try that treatment with my kids. Tammy That is soheart-breaking. I grieve for the mother. She has to live withthe fact that someone lied to her and let her precious baby die. i can't imagine her pain. JanetOh my god that's horrible. We're thinking about looking into chelation... maybe not anymore!THat is sad, but you must also wonder if it was the treatment or the doctor's fault? Chelation is safe so long as it is done correctly - meaning that the doctor has experience in treating children and regularly monitors the child to make sure the child does not have an adverse reaction to it. It could also be that the child had cardiac arrest independent of the chelation. The point is to research your doctor and credentials. It will be interesting to see what the autopsy shows. Tammy I too agree that it will be interesting to see what the autopsy shows but read somewhere that some doctors use chelation to rid the arteries of build up,I'm wondering if the pressure put on his arteries and the stress put on his heart is what caused his death.......No way to know. But why would a five year old have build up? That seems a bit young to have a buildup, unless he had a very unhealthy diet? Also what other meds was he on? Did he have any breathing problems? Was there a history of heart disease, maybe sleep apnea, asthma, in the family. Was he sick right before they gave him the dose? And how potent was the dose? The questions are endless. Then you have to take into account the doctor's experience. Any complaints against him, etc. Tammy I don't think he would have any buildup in his arteries, I was just saying that that is one of the uses for chelation, so you figure if it 's that powerful to rid the arteries of buildup in an adult, imagine what it can do to a child's system. I agree, I think it's just one of those tragic cases where we'll neverknow the answer and I'll be honest, We've wrestled with the thought of doing oral chelation after getting hm tested if in fact they are high. I think it will go down as just one of those things. I feel for everyone involved. but like littlebird said, as with anything we must remain vigilant and research everything. the meds, the drs, the treatments, i mean everything no matter what it is. As a physician, I find it interesting that many assume it's thep physician's fault that the child died. Maybe it is, maybe it isn't.Any medical therapy has risks of side effect- some are very rare but they do happen. As long as this physician explained that chelation for autism is experimental and discussed the risks, I don't really see how it's the physician's fault. The parents made an informed choice. They decided the risk was worth it. It was just a very very sad outcome and I hope for the parents sake they are able to come up with some anwsers. Even you must admit, being a doctor and all , that there are some quack doctors out there. I know I had a doctor give me some medicine one time that counterreacted against the meds I was already on. And I told him the meds I was on. That is what an autopsy is for, to see if there was anything that maybe the doctor should had follow up on and didn't, or maybe, just maybe, the kid wasn't the ideal candidate for chelatin. We all know everyone, including doctors, make mistakes. No one is perfect. No one is putting all the blame on the doctor. But what if the doctor wasn't licensed or had some complaints against him in the past for similar issues? That is what an investigation is for. Tammy You're absolutely right. And as a physician, I could not in good conscience perform chelation therapy. Risk the health of these children while charging the parents thousands of dollars.I know many criticise the traditional medical community - but when we do "experimental therapy" there is strict procedure. The treatment must pass an ethics committee. The patients are educated for an informed desicion and the therapy is free. I can certainly understand that many parents feel they can't wait the 10 year it may take for good studies to be done. But I don't see any attempt by DAN! physicians to do these studies. And why should they? They have thousands of parents paying them cash for their services. Sometimes, I think DAN!, Kirkman's lab, Great Plains and all the rest are just one big scam! Okay I must be feeling espeically skeptical today!  By the way- I feel the same way about neurologists, psychiatrist. I'm a equal opportunity critic! DS saw a neurologist at 17 months- he clearly could have been diagnosed at that time- but he replied "He can't have autism. Children with autism do not show affection to thier parents. To them their parents are just like a chair." Um.... what century do you live in? When I told DS's psychiatrist that we are trying the GFCF diet he replied "They're no evidence to show blah blah " Guess what- there's no evidence to show floortime works but you're recommending that! Okay..my rambling is coming to an end. my sons neuro said the same thing ot me 16 years ago and i went over his head and had my son tested. neuro then said it was all semantics. i am a nurse and have seen many shaky doctors doing procedures that shouldn't be done. think chelation really needs to be checked out on children before anyone harms another child Knowing almost nothing about this therapy, all I can truly say is this story breaks my heart! I have been told by another message board person that this is the only death that has ever been reported related to this therapy, and that children can even die of regular pain meds and such. Stuff just can happen sometimes. I realize that is true, and w/out really knowing about this therapy I can't say I truly know the risks or what it entails and maybe it is generally harmless for all I'm aware, but still I think I'll personally stick w/ the regular ST and OT therapies and what not. I just think of this poor little boy w/ some form/degree of autism going into cardiac arrest and it makes me sick. That should never have to happen to a young one. Children rely completely on their parents and it's our duty to protect them and make the right decisions for their welfare. These are only my personal opinions and I am not putting down in any way the choices other parents make for their own children. Amber The form of chelation which was being used in this unfortunate case was EDTA in IV form, which carries a higher risk to the patient than oral DMSA or DMPS. All forms are fully licensed by the FDA for us to reduce elevated metals, most notably lead and mercury. There is also the question of whether it was an IV drip or "push". The use of IV EDTA for arterial clog reduction is unproven and unlicensed. Drs. have gotten into trouble for using it for that purpose. There are still many questions to be answered in this tragic case before judgement can be made. It may turn out to be a case of expected adverse risk. It may be a case of malpractice. Time will tell. I do expect the antio-chelation people to use this to clamour for a complete cessation of an otherwise necessary proceedure. People with elevated metals need to be able to remove them to reduce the longterm effects they can have on body and mind.
from what i understand chelation cause you to have lower potassium levels and if that level of potassium gets too low it can cause a heart attack. that may have caused this child to die.
[QUOTE=adansmom] from what i understand chelation cause you to have lower potassium levels and if that level of potassium gets too low it can cause a heart attack. that may have caused this child to die. [/QUOTE] That is why the doctors doing chelation regularly monitor the children's bodies. I did indicate that there was a possibility that it could be negligence by the doctor, especially if the doctor did not follow procedures. I know we are speculating, but if the potassium did drop the doctor should have been aware of that. Didn't the child already receive 1-2 treatments before his cardiac arrest? I am curious as to why the parents choose to do the IV instead of the other non-invasive methods. If I do something like that it would have to be iv because my 8 year old would not take any medications at all by mouth even if I try to mix it with something that he might like I have a difficult time when he is sick and needs even tylenol or any antibiotic it has to be injected to get rid off the infection. I would like to hear from parents that are trying this and how do you even start ? and have you seen any improvement? thanks When my boy was much younger we had a heck of a time getting pills in him. Of course most standard drugs used with kids (tylenol, cold remedies, anti-biotics, etc.) come in liquid form, but even that was a real chore because most of them tastye nasty despite their grape and bubblegum flavourings, more so to an autistic child whose sensory input system hyper-focuses on small details. With the chelation therapy, IV form is not an option with the 2 safest drugs, DMSA and DMPS (they are experimenting now with transdermal DMPS, but the jury is out as to whether this medication can be absorbed effectively through the skin). DMSA is probably the best all around chelator, and certainly the best for lead and mercury, which is why it is most often used for elevated metals. Some people claim you can open the capsules and disguise the taste in a spoon of applesauce, but I tried it myself and they are full of crap. Nothing covers the taste, and it tastes very "hot". Whet we had to do with my boy was to hold him down and give him his pills like you would a cat. After a couple of times of this struggle he caught on and would cooperate with us, allowing us to place the pills on the back of his tongue and then swallowing them. After round 3 we were able to just hand him the pills and he would place them hiomself to be swallowed. I understand that each child is different and some may never catch on to taking a pill. Good luck to you! I met a Mom of a boy who had chealation and he is doing lots better now. Tx. Functional medacine did her sons. He was at high levels and almost cancer level ph levels also. I am in the process of having my son tested for Mercury level. First it would be nice to see if thier elevated. I still believe vaccinations is the cause. I think oneday the FDA will stop the cover up. I am not afraid of Chelation because of one child. It is terrible what happened. I feel so bad for the parents but even they said they would do it again! IV Chelation is far more different than oral. It goes directly into the bloodstream. (There are to many questions about what actually happened.) They have been doing Chelation for many years to remove elevated metals ex lead poising. The key is to find a Physician you trust. Chelation may not be the answer for you but for me I am very interested I know alot of Autistic children who have improved. It may not help but I don't want to look back someday and wonder if I did everything I could for my son. He is trapped, nonverbal and six. I think the DAN protocal is worth a try. I may spend lots of money ( credit) ha ha( which I do not have) I am reading a book called Children With Starving Brains. The more educated we are the more informed we can be to make sure our physician are doing proper prepartion for tx. There are risk with psychotic medication. For example, Abilify, Risperdal. Look at the side effects you would be surprised. Do we stop taking medications because of them? no. I think we have to follow our own heart of what we think is best. I have been afraid to try new things because I do not want anything to happen to him either but he is 6 yrs old at a 2 yr old level. I am investigating Chleation and plan on taking it slow if he has elevated Mercury. I do know that children who had it my support group at a younger age have improved and a few are starting it again. I plan on taking it slow and making sure it labs are done on a regular basis. I think sometime we read so much we don't know what to do. It is so hard to find proper help and physician are so hard to find who know anything about how to treat our children that is why it is up to us to investigate. Good luck! justins mom |
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My ds is the jewel of my heart and I would just die if I had to live w/out loving him. I'd rather ds have any form of autism and still be w/ me than desperately try to "cure" him and put him at any risk.