Guest guest Posted January 1, 2010 Report Share Posted January 1, 2010 Often loose stool during the period of healing is a good step. My children went through every shade and texture of stool while healing. I mean years of orange, black, green, white, brown, loose, watery, frothy etc...... Your trusted pediatrician or any other " expert " for that matter should have extensive experience with many kids who are recovering from autism. A trusted pediatrician may be a great person, but will not understand this process. Often when an intervention is working the child will get worse. You need to understand what Methyl B 12 shots are doing so you can understand the response. Our kids are poisoned. Poisoned immune and nervous systems essentially. So we are trying to get them to detox. You might see loose stool and this might be a good sign. It takes years of work to unravel what is working for the child in most cases so look at the overall picture. So a loose black sand stool might be a sign that the shot did something wonderful. An example we experienced was using Hbot. Our child became a lunatic like on speed. However 6 dives later he normalyzed and improved greatly. If we had stopped we wouldn't have seen the benefit. Also when we introduced " green drinks " our children had very loose stools many times a day. This was detox and a good thing. Mother instinct is something you can rely on. Again pediatricians are good for some things.....as for autism recovery, whomever you choose to guide you should have experience in this area. You wouldn't go to a trusted pedicatrician for cancer. All the best > > Ok, one more question.....for now. My son went to see Dr. Rao for his second visit on Wednesday. Unfortunately, I was really sick with a cold and had to send the hubby alone. Well, not alone....our 13 year old went along to take notes. LOL Anyway, the doctor sent Mike home with a bag full of supplements (I'll keep my commentary to myself here about how I feel about the fact that they just filled a bag and charged my clueless husband who thought they were giving him samples and were charging him for the visit). > > Anyway, that's not really important. What's done is done, and now I've got a hundred dollar bag of supplements. I'm going to talk to our pediatrician next week about what we've got and what to take, but I have a question about one supplement in particular (the most costly one, of course), and whether anyone here has given it to their child and the side effects. It's called Speak, and I read some interesting things about it (hard to find unbiased accounts, though), but what concerns me is that they list loose stools as a side effect. I absolutely won't start this supplement without first talking to my pediatrician, because 's already got loose stools, and I don't want to make that worse. Anyway, I was hoping maybe a few people here had experience with it and had opinions one way or another. > > The other things in the bag (that I'm just going through now as I type) are Folinic Acid, Zinc, Bio-D-Mulsion drops, and Arctic Cod Liver Oil. > > The only other thing they did while they were there (with regards to supplements) was to show Mike how to give a b12 injection. Although I was thankful that he left there feeling secure about doing those injections, I was sad that after three glorious days of solid poop (which has been unheard of here in the past 6 months), 's poop was a nasty shade of black and very sandy and mushy after that experience. Anyone have any thoughts about whether the b12 is going to make his loose stools even worse? > > I know you are not medical professionals. As I mentioned, I'm going to be seeking out the advice of my trusted pediatrician before giving ANYTHING, but I just was hoping to get your thoughts on anything you've personally had experience with. > > Thanks! > Serena > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2010 Report Share Posted January 1, 2010 , I understand that loose stools can be a sign that healing is taking place, but since 's current loose stools are a sign of no such thing, I'd like to get those taken care of (and see a positive result so that I can verify that whatever treatment or diet is working) before I start on something that will make his stools even more concerning and make it impossible for me to see if we're making any progress with the diet or whatever is recommended to heal his GI issues. I also understand where you're coming from with the warning about my " trusted " pediatrician, but she does in fact have experience (both personal and professional) with autistic children, and since she's got nothing to gain from recommending supplements (which is not the feeling I got from the doctor we just visited), I'm going to seek out her advice on this one. I think she's got a good grasp on exactly which parts of this process she can be of help with, and she's very level headed. She's not a believer that vaccines are to blame for autism, but will STILL completely support (which included lots of information on alternate schedules, etc. in the beginning) my decision to spread out/delay and now discontinue vaccinating. She's a good egg, and as I said, if there was something she didn't think she could properly counsel me on, I'm sure she'd refer me on to someone who was an expert in that particular area. Anyway, totally understand where you're coming from with the typical pediatrician, and she's not who I'm using to get all of my information....she's just the one I'm bouncing my new information off of. Plus, she's anything but typical. *wink* Serena > > > > Ok, one more question.....for now. My son went to see Dr. Rao for his second visit on Wednesday. Unfortunately, I was really sick with a cold and had to send the hubby alone. Well, not alone....our 13 year old went along to take notes. LOL Anyway, the doctor sent Mike home with a bag full of supplements (I'll keep my commentary to myself here about how I feel about the fact that they just filled a bag and charged my clueless husband who thought they were giving him samples and were charging him for the visit). > > > > Anyway, that's not really important. What's done is done, and now I've got a hundred dollar bag of supplements. I'm going to talk to our pediatrician next week about what we've got and what to take, but I have a question about one supplement in particular (the most costly one, of course), and whether anyone here has given it to their child and the side effects. It's called Speak, and I read some interesting things about it (hard to find unbiased accounts, though), but what concerns me is that they list loose stools as a side effect. I absolutely won't start this supplement without first talking to my pediatrician, because 's already got loose stools, and I don't want to make that worse. Anyway, I was hoping maybe a few people here had experience with it and had opinions one way or another. > > > > The other things in the bag (that I'm just going through now as I type) are Folinic Acid, Zinc, Bio-D-Mulsion drops, and Arctic Cod Liver Oil. > > > > The only other thing they did while they were there (with regards to supplements) was to show Mike how to give a b12 injection. Although I was thankful that he left there feeling secure about doing those injections, I was sad that after three glorious days of solid poop (which has been unheard of here in the past 6 months), 's poop was a nasty shade of black and very sandy and mushy after that experience. Anyone have any thoughts about whether the b12 is going to make his loose stools even worse? > > > > I know you are not medical professionals. As I mentioned, I'm going to be seeking out the advice of my trusted pediatrician before giving ANYTHING, but I just was hoping to get your thoughts on anything you've personally had experience with. > > > > Thanks! > > Serena > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 I did not have a good experience with Dr. Rao's office several; years ago. However, there are parents on this list tat they really like him. Here is what I think, the doctor should have gone over the reason/benefit/side effects for each of the supplements that your husband bought. If not, I would take them back or demand an explanation. The doctor should have gone over a plan of action and the order of which to give these supplements and for what purpose. I usually try one thing at a time, and never purchase a bunch of supplements at the same time. If y6ou are anywhere in Texas and you are looking for DAN doctor, I highly recommend Thoughtful House in Austin. I don't know your pediatrician but the majority are not familiar with supplements nor with biomedical treatment for autism. Supplement Questions > Ok, one more question.....for now. My son went to see Dr. Rao for his > second visit on Wednesday. Unfortunately, I was really sick with a cold > and had to send the hubby alone. Well, not alone....our 13 year old went > along to take notes. LOL Anyway, the doctor sent Mike home with a bag full > of supplements (I'll keep my commentary to myself here about how I feel > about the fact that they just filled a bag and charged my clueless husband > who thought they were giving him samples and were charging him for the > visit). > > Anyway, that's not really important. What's done is done, and now I've got > a hundred dollar bag of supplements. I'm going to talk to our > pediatrician next week about what we've got and what to take, but I have a > question about one supplement in particular (the most costly one, of > course), and whether anyone here has given it to their child and the side > effects. It's called Speak, and I read some interesting things about it > (hard to find unbiased accounts, though), but what concerns me is that > they list loose stools as a side effect. I absolutely won't start this > supplement without first talking to my pediatrician, because 's > already got loose stools, and I don't want to make that worse. Anyway, I > was hoping maybe a few people here had experience with it and had opinions > one way or another. > > The other things in the bag (that I'm just going through now as I type) > are Folinic Acid, Zinc, Bio-D-Mulsion drops, and Arctic Cod Liver Oil. > > The only other thing they did while they were there (with regards to > supplements) was to show Mike how to give a b12 injection. > Although I was thankful that he left there feeling secure about doing > those injections, I was sad that after three glorious days of solid poop > (which has been unheard of here in the past 6 months), 's poop was > a nasty shade of black and very sandy and mushy after that experience. > Anyone have any thoughts about whether the b12 is going to make his loose > stools even worse? > > I know you are not medical professionals. As I mentioned, I'm going to be > seeking out the advice of my trusted pediatrician before giving > ANYTHING, but I just was hoping to get your thoughts on anything you've > personally had experience with. > > Thanks! > Serena > > > > ------------------------------------ > > Texas Autism Advocacy > www.TexasAutismAdvocacy.org > > Texas Disability Network > Calendar of Events > www.TexasAutismAdvocacy.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 Well, , I didn't have strong feelings either way about Dr. Rao when we saw him early in December. The wait time was out of control, but I went in anticipating a 4 hour visit from the many accounts that I'd heard from others. He was nice, and answered any questions we had. He had a moron for a nurse, and before I get jumped on for calling someone a moron, let me just tell you the words that came out of her mouth. She introduced herself to us, and said " A year ago, when I came to work here, I didn't even know that autism existed. " That alone had my eyebrows raised, because it seems to me that anyone in the medical profession ought to know that autism exists. But it's what came out of her mouth next that earned her the " moron " label. She said.....(with a straight face)....... " So I know JUST how you feel. I too was once in this autism fog, and didn't know how to get through it. " Sorry, nurse Moron, but not knowing how to do your job doesn't mean that you know JUST how I feel. I feel grief. I feel extreme loss. I feel sadness for my flesh and blood. I feel desperate. I feel angry, and I feel intolerant of ignorance. Moron. My mouth was hanging open, and had I been in one of my bitter angry moods (they come and go), I think I may have screamed a little sense into her. Fortunately for her, I was tired and weary, and unable to muster up the energy to shake sense into an ignorant nurse. The other nurse was perfectly lovely, and had lots of good information for us, and as I mentioned, Dr. Rao himself seemed knowledgeable and helpful. My intent was to have tests run there with Dr. Rao, and then head to the pediatrician with my results to get her input on the available treatments for his particular issues. As I mentioned to , my pediatrician has a personal experience with autism, and although she wouldn't be the one treating him, I feel comfortable using her as a sounding board and reference. She personally has nothing to gain by suggesting supplements where a doctor selling them certainly does. Now with regard to him sending Mike home with a bagful of $100+ in supplements, it's really hard to say what he or his nurses did or didn't say to him about the benefits of each. Mike's pretty clueless when it comes to meds, and my gut reaction was that they probably filled a bag of common supplements along with one or two things that were called for because of test results and just sent him on his way. I can't really say for sure, because I wasn't there. All I can tell you is that my husband came home unable to tell me what any of it was or what it was for, or that he'd even paid for it. LOL He thought he'd been charged for the visit and that the bag of supplements were all just free samples. LOL Dummy. Part of the blame absolutely lies with Mike, because he should have been questioning them along the way, but this really isn't his area of strength (I usually handle the doctor's appointments with the kiddos), so I'm sure he didn't. I'm just going to hold on to the supplements and go over them with the pediatrician and see what she has to say about the Selenium (I read through the test results, and he had an out of range test result for that) and the Speak. I was really hoping someone here had used that, because I wouldn't mind giving it a go if I had a few people here come out in support of it. I mean, we've already shelled out the 40 bucks. LOL As far as bringing it all back......well, since I need to use this doctor for a couple more months until all of our test results are back (one just shipped out to France today and the other heads out of state Monday), it's not worth it to me to throw a fit over 100 bucks of supplements that could actually benefit him somehow. If I was going to have a fit, I'd start with nurse moron. I swear, she's going to say that to the wrong person one day, and some poor frazzled mother is going to wring her neck. For now, I don't think the girl could buy a clue. Well, I've written another novel, so I'd better get back to cleaning my mess of a house. Again, thanks for the information and your suggestions. Serena > > I did not have a good experience with Dr. Rao's office several; years ago. > However, there are parents on this list tat they really like him. > > Here is what I think, the doctor should have gone over the > reason/benefit/side effects for each of the supplements that your husband > bought. If not, I would take them back or demand an explanation. The > doctor should have gone over a plan of action and the order of which to give > these supplements and for what purpose. I usually try one thing at a time, > and never purchase a bunch of supplements at the same time. > > If y6ou are anywhere in Texas and you are looking for DAN doctor, I highly > recommend Thoughtful House in Austin. > > I don't know your pediatrician but the majority are not familiar with > supplements nor with biomedical treatment for autism. > > > > Supplement Questions > > > > Ok, one more question.....for now. My son went to see Dr. Rao for his > > second visit on Wednesday. Unfortunately, I was really sick with a cold > > and had to send the hubby alone. Well, not alone....our 13 year old went > > along to take notes. LOL Anyway, the doctor sent Mike home with a bag full > > of supplements (I'll keep my commentary to myself here about how I feel > > about the fact that they just filled a bag and charged my clueless husband > > who thought they were giving him samples and were charging him for the > > visit). > > > > Anyway, that's not really important. What's done is done, and now I've got > > a hundred dollar bag of supplements. I'm going to talk to our > > pediatrician next week about what we've got and what to take, but I have a > > question about one supplement in particular (the most costly one, of > > course), and whether anyone here has given it to their child and the side > > effects. It's called Speak, and I read some interesting things about it > > (hard to find unbiased accounts, though), but what concerns me is that > > they list loose stools as a side effect. I absolutely won't start this > > supplement without first talking to my pediatrician, because 's > > already got loose stools, and I don't want to make that worse. Anyway, I > > was hoping maybe a few people here had experience with it and had opinions > > one way or another. > > > > The other things in the bag (that I'm just going through now as I type) > > are Folinic Acid, Zinc, Bio-D-Mulsion drops, and Arctic Cod Liver Oil. > > > > The only other thing they did while they were there (with regards to > > supplements) was to show Mike how to give a b12 injection. > > Although I was thankful that he left there feeling secure about doing > > those injections, I was sad that after three glorious days of solid poop > > (which has been unheard of here in the past 6 months), 's poop was > > a nasty shade of black and very sandy and mushy after that experience. > > Anyone have any thoughts about whether the b12 is going to make his loose > > stools even worse? > > > > I know you are not medical professionals. As I mentioned, I'm going to be > > seeking out the advice of my trusted pediatrician before giving > > ANYTHING, but I just was hoping to get your thoughts on anything you've > > personally had experience with. > > > > Thanks! > > Serena > > > > > > > > ------------------------------------ > > > > Texas Autism Advocacy > > www.TexasAutismAdvocacy.org > > > > Texas Disability Network > > Calendar of Events > > www.TexasAutismAdvocacy.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 Oh great Serena, it's hard on these boards to know what people know. We're all busy moms and dads and all in different stages of getting the diagnosis, information etc.....We all want as many kids doing as well as possible. It's all good, I type fast and think of the things that have best helped me along the way. I do know one thing for sure....the parents know how to do this. I mean it's all step by step and there is no RIGHT way. It's what works best for the family. Your idea about understanding stool is reasonable and might be the right thing to do. Even when I made mistakes (many many many) they ALL taught me. It's all trial and error. Just know that correcting the bowel situation in my home took about 2 years and in doing so it took many layers of cleansings. My 2 cents. Great that you have a pediatrician that is open. I didn't go that route but admire people who do this. The idea is to build bridges, but I didn't have time or the attitude to do so. Love to you > > > > > > Ok, one more question.....for now. My son went to see Dr. Rao for his second visit on Wednesday. Unfortunately, I was really sick with a cold and had to send the hubby alone. Well, not alone....our 13 year old went along to take notes. LOL Anyway, the doctor sent Mike home with a bag full of supplements (I'll keep my commentary to myself here about how I feel about the fact that they just filled a bag and charged my clueless husband who thought they were giving him samples and were charging him for the visit). > > > > > > Anyway, that's not really important. What's done is done, and now I've got a hundred dollar bag of supplements. I'm going to talk to our pediatrician next week about what we've got and what to take, but I have a question about one supplement in particular (the most costly one, of course), and whether anyone here has given it to their child and the side effects. It's called Speak, and I read some interesting things about it (hard to find unbiased accounts, though), but what concerns me is that they list loose stools as a side effect. I absolutely won't start this supplement without first talking to my pediatrician, because 's already got loose stools, and I don't want to make that worse. Anyway, I was hoping maybe a few people here had experience with it and had opinions one way or another. > > > > > > The other things in the bag (that I'm just going through now as I type) are Folinic Acid, Zinc, Bio-D-Mulsion drops, and Arctic Cod Liver Oil. > > > > > > The only other thing they did while they were there (with regards to supplements) was to show Mike how to give a b12 injection. Although I was thankful that he left there feeling secure about doing those injections, I was sad that after three glorious days of solid poop (which has been unheard of here in the past 6 months), 's poop was a nasty shade of black and very sandy and mushy after that experience. Anyone have any thoughts about whether the b12 is going to make his loose stools even worse? > > > > > > I know you are not medical professionals. As I mentioned, I'm going to be seeking out the advice of my trusted pediatrician before giving ANYTHING, but I just was hoping to get your thoughts on anything you've personally had experience with. > > > > > > Thanks! > > > Serena > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 We used Selenium before and the one thing you should be careful about over dosing it. I still recommend Thought House. It is a whole different experience. Supplement Questions >> >> >> > Ok, one more question.....for now. My son went to see Dr. Rao for his >> > second visit on Wednesday. Unfortunately, I was really sick with a cold >> > and had to send the hubby alone. Well, not alone....our 13 year old >> > went >> > along to take notes. LOL Anyway, the doctor sent Mike home with a bag >> > full >> > of supplements (I'll keep my commentary to myself here about how I feel >> > about the fact that they just filled a bag and charged my clueless >> > husband >> > who thought they were giving him samples and were charging him for the >> > visit). >> > >> > Anyway, that's not really important. What's done is done, and now I've >> > got >> > a hundred dollar bag of supplements. I'm going to talk to our >> > pediatrician next week about what we've got and what to take, but I >> > have a >> > question about one supplement in particular (the most costly one, of >> > course), and whether anyone here has given it to their child and the >> > side >> > effects. It's called Speak, and I read some interesting things about it >> > (hard to find unbiased accounts, though), but what concerns me is that >> > they list loose stools as a side effect. I absolutely won't start this >> > supplement without first talking to my pediatrician, because 's >> > already got loose stools, and I don't want to make that worse. >> > Anyway, I >> > was hoping maybe a few people here had experience with it and had >> > opinions >> > one way or another. >> > >> > The other things in the bag (that I'm just going through now as I type) >> > are Folinic Acid, Zinc, Bio-D-Mulsion drops, and Arctic Cod Liver Oil. >> > >> > The only other thing they did while they were there (with regards to >> > supplements) was to show Mike how to give a b12 injection. >> > Although I was thankful that he left there feeling secure about doing >> > those injections, I was sad that after three glorious days of solid >> > poop >> > (which has been unheard of here in the past 6 months), 's poop >> > was >> > a nasty shade of black and very sandy and mushy after that experience. >> > Anyone have any thoughts about whether the b12 is going to make his >> > loose >> > stools even worse? >> > >> > I know you are not medical professionals. As I mentioned, I'm going to >> > be >> > seeking out the advice of my trusted pediatrician before giving >> > ANYTHING, but I just was hoping to get your thoughts on anything you've >> > personally had experience with. >> > >> > Thanks! >> > Serena >> > >> > >> > >> > ------------------------------------ >> > >> > Texas Autism Advocacy >> > www.TexasAutismAdvocacy.org >> > >> > Texas Disability Network >> > Calendar of Events >> > www.TexasAutismAdvocacy.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 Just one comment about mainstream pediatricians, they know very little to nothing about supplements. They don't get any training in medical school on supplements, and they don't read any research on them. Nagla > > Ok, one more question.....for now. My son went to see Dr. Rao for his second visit on Wednesday. Unfortunately, I was really sick with a cold and had to send the hubby alone. Well, not alone....our 13 year old went along to take notes. LOL Anyway, the doctor sent Mike home with a bag full of supplements (I'll keep my commentary to myself here about how I feel about the fact that they just filled a bag and charged my clueless husband who thought they were giving him samples and were charging him for the visit). > > Anyway, that's not really important. What's done is done, and now I've got a hundred dollar bag of supplements. I'm going to talk to our pediatrician next week about what we've got and what to take, but I have a question about one supplement in particular (the most costly one, of course), and whether anyone here has given it to their child and the side effects. It's called Speak, and I read some interesting things about it (hard to find unbiased accounts, though), but what concerns me is that they list loose stools as a side effect. I absolutely won't start this supplement without first talking to my pediatrician, because 's already got loose stools, and I don't want to make that worse. Anyway, I was hoping maybe a few people here had experience with it and had opinions one way or another. > > The other things in the bag (that I'm just going through now as I type) are Folinic Acid, Zinc, Bio-D-Mulsion drops, and Arctic Cod Liver Oil. > > The only other thing they did while they were there (with regards to supplements) was to show Mike how to give a b12 injection. Although I was thankful that he left there feeling secure about doing those injections, I was sad that after three glorious days of solid poop (which has been unheard of here in the past 6 months), 's poop was a nasty shade of black and very sandy and mushy after that experience. Anyone have any thoughts about whether the b12 is going to make his loose stools even worse? > > I know you are not medical professionals. As I mentioned, I'm going to be seeking out the advice of my trusted pediatrician before giving ANYTHING, but I just was hoping to get your thoughts on anything you've personally had experience with. > > Thanks! > Serena > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 I understand that may be true in almost all cases. Our pediatrician though has personal experience with autism, and therefore has experience with everything from the diets to biomedical interventions. As I said, she wouldn't be treating my son, just serving as a sounding board for me. Serena > > > > Ok, one more question.....for now. My son went to see Dr. Rao for his second visit on Wednesday. Unfortunately, I was really sick with a cold and had to send the hubby alone. Well, not alone....our 13 year old went along to take notes. LOL Anyway, the doctor sent Mike home with a bag full of supplements (I'll keep my commentary to myself here about how I feel about the fact that they just filled a bag and charged my clueless husband who thought they were giving him samples and were charging him for the visit). > > > > Anyway, that's not really important. What's done is done, and now I've got a hundred dollar bag of supplements. I'm going to talk to our pediatrician next week about what we've got and what to take, but I have a question about one supplement in particular (the most costly one, of course), and whether anyone here has given it to their child and the side effects. It's called Speak, and I read some interesting things about it (hard to find unbiased accounts, though), but what concerns me is that they list loose stools as a side effect. I absolutely won't start this supplement without first talking to my pediatrician, because 's already got loose stools, and I don't want to make that worse. Anyway, I was hoping maybe a few people here had experience with it and had opinions one way or another. > > > > The other things in the bag (that I'm just going through now as I type) are Folinic Acid, Zinc, Bio-D-Mulsion drops, and Arctic Cod Liver Oil. > > > > The only other thing they did while they were there (with regards to supplements) was to show Mike how to give a b12 injection. Although I was thankful that he left there feeling secure about doing those injections, I was sad that after three glorious days of solid poop (which has been unheard of here in the past 6 months), 's poop was a nasty shade of black and very sandy and mushy after that experience. Anyone have any thoughts about whether the b12 is going to make his loose stools even worse? > > > > I know you are not medical professionals. As I mentioned, I'm going to be seeking out the advice of my trusted pediatrician before giving ANYTHING, but I just was hoping to get your thoughts on anything you've personally had experience with. > > > > Thanks! > > Serena > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 Truthfully I would trust a DAN doctor's interpretation of your test results over a pediatrician's anyday. Drs. Jepson, Pothiluri and Rao are the ones in Texas I would recommend. Seriously, unless your Pedi has been attending DAN conferences I wouldn't put too much trust in his/her advice about supplements, chelation, etc... Sent from my iPhone I understand that may be true in almost all cases. Our pediatrician though has personal experience with autism, and therefore has experience with everything from the diets to biomedical interventions. As I said, she wouldn't be treating my son, just serving as a sounding board for me. Serena > > > > Ok, one more question.....for now. My son went to see Dr. Rao for his second visit on Wednesday. Unfortunately, I was really sick with a cold and had to send the hubby alone. Well, not alone....our 13 year old went along to take notes. LOL Anyway, the doctor sent Mike home with a bag full of supplements (I'll keep my commentary to myself here about how I feel about the fact that they just filled a bag and charged my clueless husband who thought they were giving him samples and were charging him for the visit). > > > > Anyway, that's not really important. What's done is done, and now I've got a hundred dollar bag of supplements. I'm going to talk to our pediatrician next week about what we've got and what to take, but I have a question about one supplement in particular (the most costly one, of course), and whether anyone here has given it to their child and the side effects. It's called Speak, and I read some interesting things about it (hard to find unbiased accounts, though), but what concerns me is that they list loose stools as a side effect. I absolutely won't start this supplement without first talking to my pediatrician, because 's already got loose stools, and I don't want to make that worse. Anyway, I was hoping maybe a few people here had experience with it and had opinions one way or another. > > > > The other things in the bag (that I'm just going through now as I type) are Folinic Acid, Zinc, Bio-D-Mulsion drops, and Arctic Cod Liver Oil. > > > > The only other thing they did while they were there (with regards to supplements) was to show Mike how to give a b12 injection. Although I was thankful that he left there feeling secure about doing those injections, I was sad that after three glorious days of solid poop (which has been unheard of here in the past 6 months), 's poop was a nasty shade of black and very sandy and mushy after that experience. Anyone have any thoughts about whether the b12 is going to make his loose stools even worse? > > > > I know you are not medical professionals. As I mentioned, I'm going to be seeking out the advice of my trusted pediatrician before giving ANYTHING, but I just was hoping to get your thoughts on anything you've personally had experience with. > > > > Thanks! > > Serena > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2010 Report Share Posted January 4, 2010 Serena:While I have used Dr. Rao for many years, I would take those supplements back or call Lynn (the nurse) and have her explain why each supplement was given. Was the decision based on specific test results? I have not heard about Speak, and so since it is the most expensive, I'd really like to know the rationale behind this one. Often, some meds or supplements can make things worse before they get better. Is this the case? If so, they should have informed your husband of this. The zinc may be due to a faulty copper/zinc ration. If testing revealed that your child is high in copper, then he needs zinc supplementation. Excess copper can cause permanent brain damage. My son has this problem and has been on zinc supplementation since age two. The D drops I am not familiar with, but find out if it is a form of vitamin D3 supplementation and ask lots of questions as to why it is necessary.  Arctic Cod liver oil is good for EVERYBODY, so that one is a good idea. Explain to Dr. Rao politely but emphatically that you do not have tons of money to blow, and so what gets spent must be absolutely necessary, and you need to know the specific rationale behind any supplementation. We buy most of our supplements from Kirkman's and in the beginning we started with a good multivitamin/mineral tablet, zinc, vitamin E, a chewable calcium tablet, melatonin (sublingual, to help him sleep -- it has been a Godsend!), bufferred magnesium oxide (which might help you son as it can firm up the stool), EFA powder (this is flax seed powder with essential fatty acids in it), and Acetyl-L Carnitine (an absolutely fantastic amino acid). We tried Super-nuthera but our son wouldn't tolerate it and it made him very hyper, so we stopped. Our son was also on methylcobalimin injections for about a year. I don't remember the stool issues and it helped him, but after a year it made him gain too much weight and made him hyper and voraciously hungry all the time, so we quit that. Moat of our supplement recommendations came from Dr. Amy Holmes. Dr. Rao had us try cysteine, which our son didn't tolerate, and bh4, which I saw now improvement with. I think many things are worth a try, but you have got to be the director. Look these things up on line and see what you can find. Kirkman's writes lengthy explainations of their supplements and rationales. Start a biomed notebook and list all the things your child is on. Then note any changes in symptoms or behavior or sleep quality, speech, wye contact and so forth. Begin only one supplement at a time so you can see which ones work and which ones don't. Use Dr. Rao's and your doctor's suggestions as a guide, but don't be afraid to disagree. Last time we went to docotr Rao, he suggested psychotropics which, he knows, is a big fat NO-NO in our book. I am not going to use prozac just because my son stims a lot. If he were violent or self-injurious, that would be another story, but not just for stimming.Dr. Andy Cutler gave me some good advice many years ago, and I stick with it: If something is going to work or give improvement, then it is going to be noticeable. Give it enough time to be sure and tehn keep or discard. Some things take longer than others. For example, anti-fungals will always give a " die-off " reaction at first. When we give anti-fungals or son's stiming gets much worse at first. he may exhibit bad behavior, but then a lot of things get much better. The same is true of chelation. These drugs feed yeast, and yeast affects our children badly, so with chelation you have to address the overgrowth of yeast. Our son had issues at the beginnig of a round, but then we saw gains. You might want to take a look at the book, " Biomedical Interventions for Children with Atuism, " and then navigate your way through what you think might help your son the most and discuss these with Dr. Rao. I do believe he is a good, caring physician, but thisis a new field with new thoughts and treatments coming about everyday. You have to be the ultimate case manager. You know your child best. Use test results to help you, and ask lots of " Why " questions. Sincerely,Haven Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2010 Report Share Posted January 4, 2010 I been wanting to respond to this in regards to the supplements and glad that Haven has shared her thoughts here as I am right along with her on this. No, no connections here w/Dr. Rao. I would contact Dr. Rao's office & get the answers directly from his office. This lacks educating the parent here in writing as anyone can be overwhelmed with such recommendations. The office should of known better. Always in writing & for many reasons also to avoid for other legal actions heaven forbid should anything happen. Trust me have witnessed this especially as they are over 18 y/o another chapter here but please request for such explanation & preferably also in writing directly from those who are treating such cause of the findings based on whatever lab results one undergoes. Even though which is great to rely on your Ped-doc, do not even get your doc in trouble here again Heaven forbid anything, Texas Medical Board is always on top of things especially when any controversial issues as these type of alternative treatments. Glad that you could consult in regards as a second opinion should the doc be open-minded. But, remember to always get who ever is treating the root causes explanation for any medical reference & educating within this arena of the biomedical approach. Haven nice response when one seeks this approach. Irma  Serena:While I have used Dr. Rao for many years, I would take those supplements back or call Lynn (the nurse) and have her explain why each supplement was given. Was the decision based on specific test results? I have not heard about Speak, and so since it is the most expensive, I'd really like to know the rationale behind this one. Often, some meds or supplements can make things worse before they get better. Is this the case? If so, they should have informed your husband of this. The zinc may be due to a faulty copper/zinc ration. If testing revealed that your child is high in copper, then he needs zinc supplementation. Excess copper can cause permanent brain damage. My son has this problem and has been on zinc supplementation since age two. The D drops I am not familiar with, but find out if it is a form of vitamin D3 supplementation and ask lots of questions as to why it is necessary.  Arctic Cod liver oil is good for EVERYBODY, so that one is a good idea. Explain to Dr. Rao politely but emphatically that you do not have tons of money to blow, and so what gets spent must be absolutely necessary, and you need to know the specific rationale behind any supplementation. We buy most of our supplements from Kirkman's and in the beginning we started with a good multivitamin/mineral tablet, zinc, vitamin E, a chewable calcium tablet, melatonin (sublingual, to help him sleep -- it has been a Godsend!), bufferred magnesium oxide (which might help you son as it can firm up the stool), EFA powder (this is flax seed powder with essential fatty acids in it), and Acetyl-L Carnitine (an absolutely fantastic amino acid). We tried Super-nuthera but our son wouldn't tolerate it and it made him very hyper, so we stopped. Our son was also on methylcobalimin injections for about a year. I don't remember the stool issues and it helped him, but after a year it made him gain too much weight and made him hyper and voraciously hungry all the time, so we quit that. Moat of our supplement recommendations came from Dr. Amy Holmes. Dr. Rao had us try cysteine, which our son didn't tolerate, and bh4, which I saw now improvement with. I think many things are worth a try, but you have got to be the director. Look these things up on line and see what you can find. Kirkman's writes lengthy explainations of their supplements and rationales. Start a biomed notebook and list all the things your child is on. Then note any changes in symptoms or behavior or sleep quality, speech, wye contact and so forth. Begin only one supplement at a time so you can see which ones work and which ones don't. Use Dr. Rao's and your doctor's suggestions as a guide, but don't be afraid to disagree. Last time we went to docotr Rao, he suggested psychotropics which, he knows, is a big fat NO-NO in our book. I am not going to use prozac just because my son stims a lot. If he were violent or self-injurious, that would be another story, but not just for stimming.Dr. Andy Cutler gave me some good advice many years ago, and I stick with it: If something is going to work or give improvement, then it is going to be noticeable. Give it enough time to be sure and tehn keep or discard. Some things take longer than others. For example, anti-fungals will always give a " die-off " reaction at first. When we give anti-fungals or son's stiming gets much worse at first. he may exhibit bad behavior, but then a lot of things get much better. The same is true of chelation. These drugs feed yeast, and yeast affects our children badly, so with chelation you have to address the overgrowth of yeast. Our son had issues at the beginnig of a round, but then we saw gains. You might want to take a look at the book, " Biomedical Interventions for Children with Atuism, " and then navigate your way through what you think might help your son the most and discuss these with Dr. Rao. I do believe he is a good, caring physician, but thisis a new field with new thoughts and treatments coming about everyday. You have to be the ultimate case manager. You know your child best. Use test results to help you, and ask lots of " Why " questions. Sincerely,Haven Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2010 Report Share Posted January 4, 2010 Dr. Rao is a very nice man, sometimes his staff are not quite as efficient as they should be, but he will spend a lot of time talking with you and answering all your questions (hence the long wait). I know I've heard the complaint often that doctors don't spend enough time with patients, well Dr. Rao does and he is very thorough, he listens to parents and will work with you. I think it's important to get an explanation of why each supplement is needed, usually it's based on lab results, or someting that a person tells him in the interview. Ask him questions, let him know your priorities and I am sure he will work with you. My son is a patient of Dr. Rao's, and I have a great deal of respect for him, but I think it's important to be the manager of your child's health, to do your own research and ask questions and make the final decisions of what you think is right for your child and your family. Nagla > > > > > > > Serena: > > > > While I have used Dr. Rao for many years, I would take those supplements > > back or call Lynn (the nurse) and have her explain why each supplement was > > given. Was the decision based on specific test results? > > > > I have not heard about Speak, and so since it is the most expensive, I'd > > really like to know the rationale behind this one. Often, some meds or > > supplements can make things worse before they get better. Is this the > > case? If so, they should have informed your husband of this. > > > > The zinc may be due to a faulty copper/zinc ration. If testing revealed > > that your child is high in copper, then he needs zinc supplementation. > > Excess copper can cause permanent brain damage. My son has this problem and > > has been on zinc supplementation since age two. The D drops I am not > > familiar with, but find out if it is a form of vitamin D3 supplementation > > and ask lots of questions as to why it is necessary. Arctic Cod liver oil > > is good for EVERYBODY, so that one is a good idea. > > > > Explain to Dr. Rao politely but emphatically that you do not have tons of > > money to blow, and so what gets spent must be absolutely necessary, and you > > need to know the specific rationale behind any supplementation. > > > > We buy most of our supplements from Kirkman's and in the beginning we > > started with a good multivitamin/mineral tablet, zinc, vitamin E, a chewable > > calcium tablet, melatonin (sublingual, to help him sleep -- it has been a > > Godsend!), bufferred magnesium oxide (which might help you son as it can > > firm up the stool), EFA powder (this is flax seed powder with essential > > fatty acids in it), and Acetyl-L Carnitine (an absolutely fantastic amino > > acid). We tried Super-nuthera but our son wouldn't tolerate it and it made > > him very hyper, so we stopped. > > > > Our son was also on methylcobalimin injections for about a year. I don't > > remember the stool issues and it helped him, but after a year it made him > > gain too much weight and made him hyper and voraciously hungry all the time, > > so we quit that. > > > > Moat of our supplement recommendations came from Dr. Amy Holmes. Dr. Rao > > had us try cysteine, which our son didn't tolerate, and bh4, which I saw now > > improvement with. I think many things are worth a try, but you have got to > > be the director. Look these things up on line and see what you can find. > > Kirkman's writes lengthy explainations of their supplements and rationales. > > > > Start a biomed notebook and list all the things your child is on. Then > > note any changes in symptoms or behavior or sleep quality, speech, wye > > contact and so forth. Begin only one supplement at a time so you can see > > which ones work and which ones don't. Use Dr. Rao's and your doctor's > > suggestions as a guide, but don't be afraid to disagree. Last time we went > > to docotr Rao, he suggested psychotropics which, he knows, is a big fat > > NO-NO in our book. > > I am not going to use prozac just because my son stims a lot. If he were > > violent or self-injurious, that would be another story, but not just for > > stimming. > > > > Dr. Andy Cutler gave me some good advice many years ago, and I stick with > > it: If something is going to work or give improvement, then it is going to > > be noticeable. Give it enough time to be sure and tehn keep or discard. > > Some things take longer than others. For example, anti-fungals will always > > give a " die-off " reaction at first. When we give anti-fungals or son's > > stiming gets much worse at first. he may exhibit bad behavior, but then a > > lot of things get much better. The same is true of chelation. These drugs > > feed yeast, and yeast affects our children badly, so with chelation you have > > to address the overgrowth of yeast. Our son had issues at the beginnig of a > > round, but then we saw gains. > > > > You might want to take a look at the book, " Biomedical Interventions for > > Children with Atuism, " and then navigate your way through what you think > > might help your son the most and discuss these with Dr. Rao. I do believe > > he is a good, caring physician, but thisis a new field with new thoughts and > > treatments coming about everyday. You have to be the ultimate case > > manager. You know your child best. Use test results to help you, and ask > > lots of " Why " questions. > > > > Sincerely, > > > > Haven > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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