Newbie Needs Feedback
Download 2 Free
|
| Back to Autism Information >> Next Topic | ||
|
Hi There! My name is Carly, mother to a 7 year old PDD-NOS,Sensory Intergration Dysfunctional son. I have just started my son on a product called PCA-RX which is a form of Oral Clathration-meant to progressively remove heavy metals from the body. According to my resources-this supplement is highly effective in reversing symtoms of Autism. I was curious if anyone had any knowledge and or experience with this product. I heard about it from a fellow parent on the "Generation Rescue" web-site (www.generationrescue.com). Any feed back would be greatly appreciated. Thank You For Your Time- Carly Seffens Some kids can live independently with pdd-nos as they get older. Some kids that are truly autistic can't. It varies for each kid. The body does absorb some natural metals. Like iron, zinc, etc. And I have never heard of any treatment that totally reverses the symptoms of autism. My kids were born with it and they had their shots late, not on time. So by the time they had their shots they were already having very subtle characteristics of autism. Tammy I am not sure if my son was born with it or not. I know that he didn't start speaking until he was almost four, and now-at nearly 8 yrs old-my four year old daughter has more intellegible speech that he does. I knew there was something "different" about Mitch from the time her was born. I am on a waiting list to see an orthopedic surgeon becuase from the time he could walk (aroung 16 mos) he has been a toe walker. His is physically unable to stand flat footed at this point. He & I have been through IEP after IEP, PT/OT/&ST since he was three. Hearing testing, Speech evaluations-you name it. Headbanging, refusal to anything new-fear of clothing, noise, silence, smell, light, dark...on and on and on. I am not necessarily blaming MMR vaccines-I just feel that knowing of the toxic world in which we live coupled with my desparity to do anything to improve my sons quality of life-I am open to anything that could potentially help my son at this point. I was in actually in contact with a woman who traced her childs heavy metal poisoining to in-utero. She had eaten freah water fish that were laten with toxic heavy metals while pregnant. I am not looking for a cure-just somthing that will help. I believe in cause and effect. Something caused this-and the effect is where my son is now. It is up to me to fill in the blanks. I hope to find some enlightenment here.Thanks Again Carly [QUOTE=Carly091178] I am not sure if my son was born with it or not. I know that he didn't start speaking until he was almost four, and now-at nearly 8 yrs old-my four year old daughter has more intellegible speech that he does. I knew there was something "different" about Mitch from the time her was born. I am on a waiting list to see an orthopedic surgeon becuase from the time he could walk (aroung 16 mos) he has been a toe walker. His is physically unable to stand flat footed at this point. He & I have been through IEP after IEP, PT/OT/&ST since he was three. Hearing testing, Speech evaluations-you name it. Headbanging, refusal to anything new-fear of clothing, noise, silence, smell, light, dark...on and on and on. I am not necessarily blaming MMR vaccines-I just feel that knowing of the toxic world in which we live coupled with my desparity to do anything to improve my sons quality of life-I am open to anything that could potentially help my son at this point. I was in actually in contact with a woman who traced her childs heavy metal poisoining to in-utero. She had eaten freah water fish that were laten with toxic heavy metals while pregnant. I am not looking for a cure-just somthing that will help. I believe in cause and effect. Something caused this-and the effect is where my son is now. It is up to me to fill in the blanks. I hope to find some enlightenment here. Thanks Again Carly [/QUOTE] I would be very cautious of this product and only use it under the supervision of a professional. From what I have read about chelation, it is not something one should undertake on their own. I know you want to help your son, but my advice would be to consult with someone who has experience in these matters before you do anything. I did some research last month when I heard about it for the first time. It is not something I would do for my son, as he is more Asperger's, and does not have most of the classic autism characteristics, but I certainly understand your desire to improve your son's quality of life. Good luckChelation is actually a medical process that has to be executed, supervised and prescribed by a physician either orally,via supository, interveniously, or transdermally. And I agree-even if I could-I would not under go such a therapy without the supervision. With medical chelation-it is possible that while the metals are being extracted from the cells that they can be redeposited before the are excreted from the body. Potentially doing more harm than good. Apparently with clathration-all natural ingredents (algea and good bacteria like those found in yogurt, plus additional ingreidents) are used to to extract the metals from the cells and completely surround them preventing them from being re-deposited. It is just a supplement and not a prescription. The mother that told me about it said that her pediatrician suggested it to her. The more I say the more I feel like this sounds like some sort of sales pitch-and I promise you I am not selling anything. I work for an insurance agency in MI that is very opposed to experimental treatments & I actually just spent my entire paycheck on these supplements. Thus the reason I am desperatly looking for some sort of feedback on any experience anyone has had with this and or similar products. Today was our third day of the spray, and I can honestly say that my son has been far more cooperative today-and (and I know this may seem trivial) he actually drank water today. My son drinks nothing but milk/gatorade. That's it. Never strays. Milk or Gatorade. Today-he asked for "Ice Water". I almost fell down. Again-any and all feedback is welcome. I purchased the supplement from www.awakennutrition.com. Anyone with experience with this, or even if you look at the web site and see any red flags I should be aware of. Thanks For Listening- Carly well I posted to this but something happened and the page wouldnt display and it lost everything I typed. So here goes a simpler and more to the point OPINION I TRUST NOTHING that promises to be a quick fix miracle cure and to me thats what this is. If it is safer then chelation and yet does the same thing (removes the metals) then WHY are doctors still using chelation?????????? ANYTHING you put in your body has an effect there. How do you know this is safe and doesnt remove essentials vitamins nutrients and minerals? These places prey on parents like us who are desperate for help for our kids. (Thats how they make money and this stuff surely isnt cheap at $125 a bottle!)They prey on parents who are heartbroken over the way their kids struggle and what they go through and desperate to find help and answers and want to improve their life. Its Understandable we want to do all we can for our kids. BUT they charge a small fortune for these products that can actually cause MORE HARM for our kids and hide behind their disclaimer. They arent going to tell us to go to our doctors first because most doctors are going to say NO to it. He is your child. The decision is ultimately yours. PLEASE be careful when deciding. I know how tempting the thought of curing or at least helping and improving life for our child is! Secretin was coming out just after my son was diagnosed. we were all hoping he could try it, we even ended up seeing the Dr in our area who was Big on it and had appeared on TV programs like 60 minutes or 20/20. We never did try it and Im glad because now thye are finding it didnt really help like they thought it did. It taught me a valuable lesson not to trust everything I hear see or read about. Whatever you decide..... I strongly encourage you to check with your child's doctor and have him monitored. How do you know if this might have any allergic reactions, serious side effects, cause problems with other areas of the body, or have a negative reaction to other meds he might be on? Find out the ingredients in this product and research each one individually. The only reason my hopes are so high is because it was recommeded to me from a woman for whom it actually has helped. I met her on an autism support website that is actually huge advocates for medical chelation. I was looked up the D.A.N. doctors in my area that are willing to administer chelation-and then contacted Mary that was on a list of parents whose children were undergoing chelation. She named off 3 of the D.A.N. doctors in our area and then told my that one of them had suggested this supplemt to her. 3 of her 4 (the 4th one never having received her MMR vaccine) children are autistic and have made tremendous progress. And the result are anything but quick. 1-2 years of treatment-with a bottle of the spray lasting any where from 2-4 mths. I know its a lot of money-by my health insurance isn't going to pay for medical chelation either. I am waiting until August for an appiontment with a nuro. My pediatrician-is great when it comes to illness. But we have been trying to figure out what is wrong with my son for a very long time-and only the school was able to help with the diagnosis. When I bring up Autism to my pediatrician he immedeatly suggestes a Neurologist. My heatlh insurance doesn't begin untill August-and my sons current health insurance is terrible and won't pay for any of the DAN doctors and very few Neurologists. I don't mean to sound cavaleer-but I don't see how it can hurt in the interum. I am taking it along with my son so that if I start to feel any side effects-I will know to pull him off of it. I personally would like to detox for my own health. The product engulfs the metal preventing it from being redeposited in the bowel or anywhere else. The website says clathrating agents work on a lock and key principal which makes them target metals more particulary, leaving behind the valuable elements (calcium,iron..) Worse case scenario is that I bought a "snake oil" type product (because it tastes like water). I am absolutley willing to do any to help my son. I would rather have tried, then to never have known-I hope that makes sense. We have just come to far. Thanks Again Carly Carly, you asked for opinions and RED FLAGS My first question..... have you tested to see if he IS mercury poisioned? Keep in mind just because you may also take the same product you aren't receiving the same amount in your body as he is in his (unless you give yourself an increaed dosage) Even with an increased dosage all people respond differently to things. (Think of how two people same age height and weight respond differently to alcohol.) Is he able to tell you how he is feeling if there is something wrong? I found this info ........ The greater the toxicity – the greater the impairment ???? QUESTION ???? Predisposing Factors for ASD Genetics Blood Type HLA- Type Family History of Autoimmunity Single Nucleotide Polymorphisms (SNP) causing impaired detoxification Heavy Metal Burden Mom (amalgams, fish consumption, rhogam, vaccines, environment, occupation, oral contraceptives) Patient (immunizations, environmental toxics, antibiotics, immune issues, gastrointestinal permeability) Infectious Agents Virus (Measles, HHV6, CMV…) Bacteria (Streptococcus, Clostridia…) Fungal (Candida) (Some) Sources of Mercury Auto Exhaust Pesticides Fertilizers AMALGAMS Drinking Water Felt Ear Drops Nose Drops VACCINES Contact Lens Solution Fabric Softeners SEAFOOD Calomel (Talc) Cinnabar (Jewelry) Cosmetics (Mascara) Wood Preservatives Floor Waxes/ Polishes Coal Burning Plants ???? QUESTION ???? Clean up the Diet Casein-free/Gluten-free/Soy-free Diet Trial for 3-6 months Avoid sugar and refined starch, high protein, high fiber diet, high good fats, maximize antioxidants, increase cruciferous veggies, blue foods, garlic, turmeric, and fermented foods Limit processed and preserved foods, organic is best Avoid excitotoxins (ex. Caffeine, MSG, NutraSweet, red/yellow food dyes, nitrites, sulfites, glutamates, preservatives) Limit intake of phenolics (apples, grapes, strawberry) Limit sources of Copper (chocolate, shellfish, tap water, artificial food dyes) Drink plenty of filtered water Never microwave in plastics or Styrofoam Eliminate seafood Begin meals with raw fruits and veggies Add good fats (olive, coconut, flax). Avoid hydrogenated and trans fats Buy hormone-free, antibiotic-free, organic meat and eggs ???? QUESTION ???? Clean up the Child’s Environment Use natural, biodegradable and perfume free detergents and cleaning agents, do not dry clean clothes Avoid chlorine: use water filters, limit pool and hot tubs Wear 100% cotton clothes, avoid flame retardant materials (antimony) Use fluoride-free toothpaste (tin,titanium) Avoid playing on pressure treated wood (arsenic) Eliminate exposure to Mercury and thimerosal products Use an air purifier especially in the bedroom Avoid prolonged exposure to batteries (light up shoes) No plastic furniture (polyvinyl chloride) Use aluminum-free baking powder, deodorant. Do not cook in aluminum foil or drink from aluminum cans Avoid use of herbicides or pesticides, on lawns, garden, or home Use natural shampoos, soaps, and make-up (lipstick-Pb, foundation-Bi) ONCE AGAIN I DO NOT TRUST ANY OF THESE QUICK FIX MIRACLE CURES AND I CAUTION ANYONE WHO WOULD PUT A PRODUCT LIKE THIS IN THEIR CHILD WITHOUT CONSULTING THEIR CHILD'S DOCTOR AND DOING SO UNDER THEIR DIRECT ADVICE AND SUPERVISION!! REMEMBER THE SAYING OF BELIEVE ONLY SOME OF WHAT YOU HEAR AND ONLY 1/2 OF WHAT YOU SEE? ADD TO IT YOU CANT BELIEVE EVERYTHING ON THE INTERNET!! http://www.autism-pdd.net/forum/forum_posts.asp?TID=1386& ;PN=1 There is a New York Times article there and it talks about chelatin treatment. This is from the article: Hundreds of doctors list their names on a Web site endorsing chelation to treat autism, even though experts say that no evidence supports its use with that disorder. The treatment carries risks of liver and kidney damage, skin rashes and nutritional deficiencies, they say. Tammy
Great reply Mssteelers fan! If this product works I think its great but Mssteelers fan is right that their are lot of people who will pray on parents like us who are pretty vulnerable and always lookin for a Miracle Cure, I don't know much about it but if it works great, but if their was anything that truelly reversed Autism, I am sure it would be the best selling product in the world.
hi carly welcome to the board im affraid i cant help with this but thought id let u know that both my boys are both asd . i never had their jabs and they both ended up on the spectrum etc. what ever u decide to do that is up to u butplease take note of what others have said etc . unfortunatley over the years we have been picked out for money making schemes and so just be carefull . i personally do not belive u can cure autism . but i could be wrong i dont know . take care xx
Carly i can feel your pain. I am the mother of a recently diagnosed son with asd. He is my world and I am devastated. But I intend to make sure he leads a normal and happy life. I would never do anything to harm him and am cautious though I dont rule out, chelation therapy. All i can suggest to you is that you read as much as you can. Visit a toxicologist, phone one, email one and ask them what the procedure is for a hair analysis. This is probably your best first pont of action. No you shouldnt believe everything you read on the internet. However, I dont believe that there is a political WILL to find the cause of autism. Lets face it, if it turns out that mercury and toxins in the environment are causing autism, how readily do you think the industrial fat cats and pharma companies are going to admit this??? THEY ARE NOT. Do they want to find the answer? Autism is merely a term for a spectrum of of observed behaviours. Its like the colour wheel, it goes from white to black with infinite variations in between. Use your gut instinct and dont listen to those who really want to persuade you one way or another. Everybody has a MOTIVE in this emotive issue. I dont know if you have ever visited the vaccine sites (antivaccine sites) but they have trolls who lurk waiting for someone to "shoot down" when they get too adamant in their position. The autism debate has caused a lot of evangelism and its on both sides. You are your childs mom. If you want to make some progress with your son, I am afraid it is almost totally up to you. I learned that real quick. Its like taking your car to the mechanic and having to tell him whats wrong, before he can fix it. Something terribly wrong is going on in society. I do NOT believe that better screening is causing the numbers of autism to rise. I believe it really is rising. My own doctor had 50 cases in 2000. Now he has 250 cases. What is wrong with that picture???????? Just remember, everyone has their own personal views and instincts. some have an axe to grind as well. And yes, some are out to make money. But sure, you know this already. Just research all you can and do it quickly. You dont have time to wait. This is a link to a U.K. web site i found last month. The owner of the web site is vehemently opposed to chelation but has garnered a lot of pro chelators. If you read through this blog, you might find something of interest. http://www.kevinleitch.co.uk/wp/?p=226 If the link dosent work just google blogs and autism. You will find it. Hope that helps and keep the faith. I am on your side. Carly my son has had no jabs either. However, I have 30 fillings in my teeth, some done just before I got pregnant. also i had a nasty heb b jab years ago as i worked with blood. Apart from that i smoke like a train and have lived in industrial cities all my life. I am sure we all could use a little chelation in our bodies. If you add what I have been exposed to, as well as the fact I have developed no less than three auto immune diseases in my adult life, that really adds up to something. It makes sense that if my immunity is compromised that my babies could be too. There is NO autism or asd in my family whatsoever. I dont think its about genes as such. I think it is about a combination of genetic factors which predestine someone to having a compromised immune system in the face of so many toxins. They still dont know what plastics do to us. Are there any government warnings on plastic baby bottles despite the research done on this? NOPE We have so many toxins in our houses today that we just didnt have 50 years ago. yes we had toxins 50 years ago, but they were different. also remember, 60 years ago, doctors said it was GOOD to smoke, that it calmed the nerves. Remember watching all the old movies, with everyone having a cigarette in their hand? Was there a political will to get rid of ciggies then? Nope, they didnt have the research. They must have KNOWN it was bad, it certainly couldnt have been good. But nothing was done for 50 years. Science changes. Maybe chelation is the tip of the iceberg, i dont know. But just be careful. My mom suggests I try this for our ds - age 15 with autism. we did do the gluten free and it helped til puberty then an antidepressant did the same thing for him for the most part. I can't bring myself to do it just yet.
"All nautral" can be misleading. Many harmful things are also "natural". Please investigate carefully. I think everyone has offered great info. The main point is to research research and research to find what you think will be the best for your child and family. I use to think the chelation was a crock, but I don't anymore if it is done in a method as proposed by the DAN docs and indicated by the Autism Research Institute in CA http://www.autismwebsite.com/ari/index.htm. I have met a group of mothers who are going to DAN docs have have seen great progress with the treatment. It is not just chelation, but changes in diet, adding vitamin supplements and better/ healthier lifestyle. The purpose is to heal all the problems internally, then to focus on therapies, ie ST, OT, etc. The 2 women I know whose children are almost finished w/ teh chelation (which takes a year of gradually removing it from the body) have documented their progress. Neither of their sons are in any speech or occupational therapies, but they are doing so well. They aren't cured, but they are doing so much better. For instance, one of the boys was just lik my daughter - talking in 2-4 word phrases for needs and wants. Since he started the diet and chelation last year, he now has conversations about everything around him. He is more engaged and social.. He has not been in any therapies, except a ESE program w/ a class w/ mostly typical children. The mother says that he is more ADD now than Autistic. DAN docs indicate that some kids can overcome their disorder, but all will benefit in some form from the treatment. It is a packaged deal...there is a process that takes a good 1-2 years before completion. As for the mercury measuring, everywhere I have looked has said there is no method that measures mecury content in the body accurately. Sure you can measure it in the hair or blood, but there are different types of mercury. One absorbs into the organs and tissues and is very very difficult, if not impossible, to measure. THe only accurate method of measurement is to do chelation and measure what comes out in the urine. Chelation does remove other metals. That is why you need this done by a doc who knows what they are doing. DAN docs provide supplements and regularly check the child's health to make sure there is no adverse affects to the supplements, diets and chelation. I believe in the DAN doctors and there is more and more evidence coming out (now that they are doing more research) that their method can make a difference and improve the lifes of spectrum kids. I would check what sort of research this company has done into their product. Vitamins and supplements are ok but as many doctors will tell you vitamins mostly end up going in the toilet as they aren't absorbed by the body properly and the ones that are can do harm. For example too much vitamin A is toxic. I have had many miracle treatments offered to me in the 11 years I have been dealing with this dx and mostly they have been proven to be a waste of time.I would weigh up how much therapy I could buy with the money or healthy foods that aren't too processed. I have heard of kids with ADD who have moved to a farm and been removed from the toxic environment of the city doing so much better. The problem is we don't often have that choice. Do they have a website we could check out because I would be interested in their claims. By the way my son was tested for heavy metals by the paediatrician and he showed as being ok so I have never bothered with chelation. I have concentrated on using ABA therapy as my main treatment with very good results. Good luck with whatever you decide and keep us posted. |
||
|
Copyright Autism-PDD.net
|
