Guest guest Posted May 17, 2012 Report Share Posted May 17, 2012 Hi All, I have been following the site for a few months now and am very interested in how biomed can improve my DS quality of life/recovery. My husband however is a sceptic and wary of charlatans. he has agreed to go to the Sept conference and let me do some testing at great plains BUT won't let me try the GF/CF diet as he is scared about DS not eating anything and how this will impact on the family. My DS (aged 5) is on the HF side of ASD and I regularly get that he is " not that bad " in the scheme of things so it is hard to fight for any help but I would like to ensure that I am doing everything I can to make " not that bad " better. To this end here are his results: Gluten peptides 0.1 (well within the accepted range) Casin Petides 0.56 (right at the top of the range) IgG + candida test was all well within range Porphyrins: 6-CP 0 (range 0-4 so okay?) PreCP 0 (range 0-9 so okay?) High CP 206 (range below 153 normal) Organic acids: High - arabinose/aconitic/2-hydroxyhippuric low - Vit B5/B6/C (even though he loves oranges) heavy metals: off the scale - aluminum/antimony/silver over 68th percentile - lead/nickel/tin/chronium/vanadium low - calcium/magnesium/zinc/boron/phosphorus What would you suggest? He has always drunk goats milk but they give him cows milk in school daily (languague unit but 5 out of 6 kids also asd, attached to a mainstream school). he has gone off all milk in the last 2 weeks as we were trying to put Biocare B6 in it and now he refuses it as 'yucky'. he is taste sensitive so getting anything into him is a struggle. He has regular nightsweats and I have seen these increase considerable over the last 6 months and often has one (either) flaming red ear (rim only), although he says it doesn't hurt. His diet is limited to very casin gluten oriented with the exception of loving fruit (no veg though). Also we have bought a water filter tap but not sure this is enough re heavy metals. any deciphering of the above would be greatly appreciated and any suggestions welcomed. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2012 Report Share Posted May 17, 2012 Sounds like he has phenol issues Epsom Salts bath/cream and or No Phenol enzymes should help that. If you did TriEnza instead of No Phenol that would cover all foods including gluten and casein, I can send you samples if you want, they come in chews also. www.EnzymeInfo.co.uk How did you test heavy metals? Mandi x Hi All,I have been following the site for a few months now and am very interested in how biomed can improve my DS quality of life/recovery.My husband however is a sceptic and wary of charlatans. he has agreed to go to the Sept conference and let me do some testing at great plains BUT won't let me try the GF/CF diet as he is scared about DS not eating anything and how this will impact on the family. My DS (aged 5) is on the HF side of ASD and I regularly get that he is "not that bad" in the scheme of things so it is hard to fight for any help but I would like to ensure that I am doing everything I can to make "not that bad" better.To this end here are his results:Gluten peptides 0.1 (well within the accepted range)Casin Petides 0.56 (right at the top of the range)IgG + candida test was all well within rangePorphyrins:6-CP 0 (range 0-4 so okay?)PreCP 0 (range 0-9 so okay?)High CP 206 (range below 153 normal)Organic acids:High - arabinose/aconitic/2-hydroxyhippuriclow - Vit B5/B6/C (even though he loves oranges)heavy metals:off the scale - aluminum/antimony/silverover 68th percentile - lead/nickel/tin/chronium/vanadiumlow - calcium/magnesium/zinc/boron/phosphorusWhat would you suggest? He has always drunk goats milk but they give him cows milk in school daily (languague unit but 5 out of 6 kids also asd, attached to a mainstream school). he has gone off all milk in the last 2 weeks as we were trying to put Biocare B6 in it and now he refuses it as 'yucky'. he is taste sensitive so getting anything into him is a struggle. He has regular nightsweats and I have seen these increase considerable over the last 6 months and often has one (either) flaming red ear (rim only), although he says it doesn't hurt. His diet is limited to very casin gluten oriented with the exception of loving fruit (no veg though).Also we have bought a water filter tap but not sure this is enough re heavy metals.any deciphering of the above would be greatly appreciated and any suggestions welcomed. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2012 Report Share Posted May 17, 2012 HI, the heavy metals was a hair test. we grew his hair and got a good sample 1inch long from the nape of his neck. you sent me some trienza back in Jan - would they still be okay to use? My husband didn't want me to use them until we did the tests to get a base line result. Also no hope witht he chews. can try and open the capsules and put them on a medicine spoon and insist he takes them with enough coaxing. i have to do them before every meal right?? > > Sounds like he has phenol issues Epsom Salts bath/cream and or No Phenol > enzymes should help that. If you did TriEnza instead of No Phenol that would > cover all foods including gluten and casein, I can send you samples if you > want, they come in chews also. > > _www.EnzymeInfo.co.uk_ (http://www.EnzymeInfo.co.uk) > > How did you test heavy metals? > > Mandi x > > > In a message dated 17/05/2012 11:24:03 GMT Daylight Time, > gillianpass@... writes: > > > > > Hi All, > > I have been following the site for a few months now and am very interested > in how biomed can improve my DS quality of life/recovery. > My husband however is a sceptic and wary of charlatans. he has agreed to > go to the Sept conference and let me do some testing at great plains BUT > won't let me try the GF/CF diet as he is scared about DS not eating anything > and how this will impact on the family. My DS (aged 5) is on the HF side of > ASD and I regularly get that he is " not that bad " in the scheme of things > so it is hard to fight for any help but I would like to ensure that I am > doing everything I can to make " not that bad " better. > > To this end here are his results: > Gluten peptides 0.1 (well within the accepted range) > Casin Petides 0.56 (right at the top of the range) > IgG + candida test was all well within range > Porphyrins: > 6-CP 0 (range 0-4 so okay?) > PreCP 0 (range 0-9 so okay?) > High CP 206 (range below 153 normal) > Organic acids: > High - arabinose/aconitic/2-hydroxyhippuric > low - Vit B5/B6/C (even though he loves oranges) > heavy metals: > off the scale - aluminum/antimony/silver > over 68th percentile - lead/nickel/tin/chronium/vanadium > low - calcium/magnesium/zinc/boron/phosphorus > > What would you suggest? He has always drunk goats milk but they give him > cows milk in school daily (languague unit but 5 out of 6 kids also asd, > attached to a mainstream school). he has gone off all milk in the last 2 weeks > as we were trying to put Biocare B6 in it and now he refuses it as 'yucky'. > he is taste sensitive so getting anything into him is a struggle. He has > regular nightsweats and I have seen these increase considerable over the > last 6 months and often has one (either) flaming red ear (rim only), although > he says it doesn't hurt. His diet is limited to very casin gluten oriented > with the exception of loving fruit (no veg though). > > Also we have bought a water filter tap but not sure this is enough re > heavy metals. > > any deciphering of the above would be greatly appreciated and any > suggestions welcomed. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2012 Report Share Posted May 17, 2012 Hi Gillian, My comments are interspersed. > > Hi All, > > I have been following the site for a few months now and am very interested in how biomed can improve my DS quality of life/recovery. > My husband however is a sceptic and wary of charlatans. he has agreed to go to the Sept conference and let me do some testing at great plains BUT won't let me try the GF/CF diet as he is scared about DS not eating anything and how this will impact on the family. If a kid's diet is very casein and gluten heavy, those kids are often the best responders to diet. I know it's hard to make dietary changes, but if you do the reseach on what gluten and casein can do to the immune response and specifically the brain cells, taking them away for a few months to see what happens seems pretty easy. My DS (aged 5) is on the HF side of ASD and I regularly get that he is " not that bad " in the scheme of things so it is hard to fight for any help but I would like to ensure that I am doing everything I can to make " not that bad " better. Good for you :-) As you're experiencing, lots of people don't see the need. If you look at the research on outcomes for the highest functioning people with ASD diagnsoses, life isn't so good for them. Most don't have jobs, still live at home, have very very limited social lives. Not what we want for our kids. > > To this end here are his results: > Gluten peptides 0.1 (well within the accepted range) > Casin Petides 0.56 (right at the top of the range) I've never thought these particular tests are very worthwhile. Trying the diet is more telling. > IgG + candida test was all well within range > Porphyrins: > 6-CP 0 (range 0-4 so okay?) > PreCP 0 (range 0-9 so okay?) > High CP 206 (range below 153 normal) Do you mean CoPro when you say CP? That measures overall affect of metals like mercury, lead, arsenic. It seems very wierd that you have two zero values. I'm not sure I've seen people with zero before, which makes me think that you may have false negatives. This isn't uncommon among kids who've had no chelation yet. > Organic acids: > High - arabinose/aconitic/2-hydroxyhippuric > low - Vit B5/B6/C (even though he loves oranges) > heavy metals: > off the scale - aluminum/antimony/silver > over 68th percentile - lead/nickel/tin/chronium/vanadium > low - calcium/magnesium/zinc/boron/phosphorus These results suggest that your porphyrins test results might be false negatives. Loads of our kids are low in micronutrients like magnesium, zinc, boron etc. If your kid has yeast/bacterial problems (arabinose may suggest yeast--it is a bit controversial) then sometimes giving calium is trickier, as kids with low K can have issues, exacerabated by low D, low magnesium. > > What would you suggest? He has always drunk goats milk but they give him cows milk in school daily (languague unit but 5 out of 6 kids also asd, attached to a mainstream school). he has gone off all milk in the last 2 weeks as we were trying to put Biocare B6 in it and now he refuses it as 'yucky'. he is taste sensitive so getting anything into him is a struggle. He has regular nightsweats and I have seen these increase considerable over the last 6 months and often has one (either) flaming red ear (rim only), although he says it doesn't hurt. His diet is limited to very casin gluten oriented with the exception of loving fruit (no veg though). One red ear is often a sign of food intolerance. That is, the body cannot metabolize the food properly (or part of it). If his diet is as you say, I would most certainly try something like SCD for a few months to see what happens. If you believe your kid will need supplements to get better, and lots of kids do, the smartest thing to do in my opinion is to ensure your kid will take the supps. Use behavioural techniques to make it a non-issue over time. My son had huge sensory issues at the time, but I knew he'd need supps, and now he'll take anything. It is a lot easier when they are younger, and they are all younger today then they will be tomorrow. Anita > > Also we have bought a water filter tap but not sure this is enough re heavy metals. > > any deciphering of the above would be greatly appreciated and any suggestions welcomed. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2012 Report Share Posted May 17, 2012 Hi Anita, Thanks for these comments. My husband wanted these tests to see whether we needed the gf/cf diet. I know it is easier to just do it but it is causing a big argument in our house as my DS will probably eat nothing for a few days which hubby will not be able to cope with. Can you expand on the behavioural techniques you used? Thanks Gillian > > > > Hi All, > > > > I have been following the site for a few months now and am very interested in how biomed can improve my DS quality of life/recovery. > > My husband however is a sceptic and wary of charlatans. he has agreed to go to the Sept conference and let me do some testing at great plains BUT won't let me try the GF/CF diet as he is scared about DS not eating anything and how this will impact on the family. > > > If a kid's diet is very casein and gluten heavy, those kids are often the best responders to diet. I know it's hard to make dietary changes, but if you do the reseach on what gluten and casein can do to the immune response and specifically the brain cells, taking them away for a few months to see what happens seems pretty easy. > > My DS (aged 5) is on the HF side of ASD and I regularly get that he is " not that bad " in the scheme of things so it is hard to fight for any help but I would like to ensure that I am doing everything I can to make " not that bad " better. > > Good for you :-) As you're experiencing, lots of people don't see the need. If you look at the research on outcomes for the highest functioning people with ASD diagnsoses, life isn't so good for them. Most don't have jobs, still live at home, have very very limited social lives. Not what we want for our kids. > > > > > > To this end here are his results: > > Gluten peptides 0.1 (well within the accepted range) > > Casin Petides 0.56 (right at the top of the range) > > I've never thought these particular tests are very worthwhile. Trying the diet is more telling. > > > > IgG + candida test was all well within range > > Porphyrins: > > 6-CP 0 (range 0-4 so okay?) > > PreCP 0 (range 0-9 so okay?) > > High CP 206 (range below 153 normal) > > Do you mean CoPro when you say CP? That measures overall affect of metals like mercury, lead, arsenic. It seems very wierd that you have two zero values. I'm not sure I've seen people with zero before, which makes me think that you may have false negatives. This isn't uncommon among kids who've had no chelation yet. > > > > Organic acids: > > High - arabinose/aconitic/2-hydroxyhippuric > > low - Vit B5/B6/C (even though he loves oranges) > > heavy metals: > > off the scale - aluminum/antimony/silver > > over 68th percentile - lead/nickel/tin/chronium/vanadium > > low - calcium/magnesium/zinc/boron/phosphorus > > > These results suggest that your porphyrins test results might be false negatives. Loads of our kids are low in micronutrients like magnesium, zinc, boron etc. If your kid has yeast/bacterial problems (arabinose may suggest yeast--it is a bit controversial) then sometimes giving calium is trickier, as kids with low K can have issues, exacerabated by low D, low magnesium. > > > > > > What would you suggest? He has always drunk goats milk but they give him cows milk in school daily (languague unit but 5 out of 6 kids also asd, attached to a mainstream school). he has gone off all milk in the last 2 weeks as we were trying to put Biocare B6 in it and now he refuses it as 'yucky'. he is taste sensitive so getting anything into him is a struggle. He has regular nightsweats and I have seen these increase considerable over the last 6 months and often has one (either) flaming red ear (rim only), although he says it doesn't hurt. His diet is limited to very casin gluten oriented with the exception of loving fruit (no veg though). > > One red ear is often a sign of food intolerance. That is, the body cannot metabolize the food properly (or part of it). If his diet is as you say, I would most certainly try something like SCD for a few months to see what happens. > > If you believe your kid will need supplements to get better, and lots of kids do, the smartest thing to do in my opinion is to ensure your kid will take the supps. Use behavioural techniques to make it a non-issue over time. My son had huge sensory issues at the time, but I knew he'd need supps, and now he'll take anything. It is a lot easier when they are younger, and they are all younger today then they will be tomorrow. > > Anita > > > > > > Also we have bought a water filter tap but not sure this is enough re heavy metals. > > > > any deciphering of the above would be greatly appreciated and any suggestions welcomed. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2012 Report Share Posted May 17, 2012 Hi Gillian, Just basic ABA sort of stuff. I explained to ds that he had to take the 'yucky' even though I'm fairly confident he couldn't understand my words then. I was calm but unwavering (at least outside, I felt terrible making him do this). I started with a very small spoon of yucky, had a cloth ready to wipe his mouth, and favourite drink ready to wash away the bad flavour, and then plenty of praise and a favourite activity to follow. Over time, the yucky gets bigger, and the rest just becomes routine. DS is severely affected, but I think he was able to feel the yucky helping him, and as I said, now it isn't a problem. I mix his powder supps in with lemon CLO for flavour, or else I put the pills he can swallow into a bit of pear puree. It really helps to taste the supps yourself as some taste fine, others are awful. If you can get the awful ones into capsules and teach him to swallow those, it's a huge help. As far as your child not eating, there are some few kids who won't eat at all if they don't get their regular foods. But those kids are very rare. If your son eats fruit, just go with some fruit for a few days. If you see real behaviours start, or improvements even, then that is very motivating even for doubters. I personally would just get my husband out of the house for a week if that was an option :-) Maybe take the other kids for a trip? I do think it's important that you are well prepared though. Better to postpone a bit and be very ready, then to jump in and not succeed. Especially important if you're not going to get a lot of support from the rest of the family. Anita > > > > > > Hi All, > > > > > > I have been following the site for a few months now and am very interested in how biomed can improve my DS quality of life/recovery. > > > My husband however is a sceptic and wary of charlatans. he has agreed to go to the Sept conference and let me do some testing at great plains BUT won't let me try the GF/CF diet as he is scared about DS not eating anything and how this will impact on the family. > > > > > > If a kid's diet is very casein and gluten heavy, those kids are often the best responders to diet. I know it's hard to make dietary changes, but if you do the reseach on what gluten and casein can do to the immune response and specifically the brain cells, taking them away for a few months to see what happens seems pretty easy. > > > > My DS (aged 5) is on the HF side of ASD and I regularly get that he is " not that bad " in the scheme of things so it is hard to fight for any help but I would like to ensure that I am doing everything I can to make " not that bad " better. > > > > Good for you :-) As you're experiencing, lots of people don't see the need. If you look at the research on outcomes for the highest functioning people with ASD diagnsoses, life isn't so good for them. Most don't have jobs, still live at home, have very very limited social lives. Not what we want for our kids. > > > > > > > > > > To this end here are his results: > > > Gluten peptides 0.1 (well within the accepted range) > > > Casin Petides 0.56 (right at the top of the range) > > > > I've never thought these particular tests are very worthwhile. Trying the diet is more telling. > > > > > > > IgG + candida test was all well within range > > > Porphyrins: > > > 6-CP 0 (range 0-4 so okay?) > > > PreCP 0 (range 0-9 so okay?) > > > High CP 206 (range below 153 normal) > > > > Do you mean CoPro when you say CP? That measures overall affect of metals like mercury, lead, arsenic. It seems very wierd that you have two zero values. I'm not sure I've seen people with zero before, which makes me think that you may have false negatives. This isn't uncommon among kids who've had no chelation yet. > > > > > > > Organic acids: > > > High - arabinose/aconitic/2-hydroxyhippuric > > > low - Vit B5/B6/C (even though he loves oranges) > > > heavy metals: > > > off the scale - aluminum/antimony/silver > > > over 68th percentile - lead/nickel/tin/chronium/vanadium > > > low - calcium/magnesium/zinc/boron/phosphorus > > > > > > These results suggest that your porphyrins test results might be false negatives. Loads of our kids are low in micronutrients like magnesium, zinc, boron etc. If your kid has yeast/bacterial problems (arabinose may suggest yeast--it is a bit controversial) then sometimes giving calium is trickier, as kids with low K can have issues, exacerabated by low D, low magnesium. > > > > > > > > > > What would you suggest? He has always drunk goats milk but they give him cows milk in school daily (languague unit but 5 out of 6 kids also asd, attached to a mainstream school). he has gone off all milk in the last 2 weeks as we were trying to put Biocare B6 in it and now he refuses it as 'yucky'. he is taste sensitive so getting anything into him is a struggle. He has regular nightsweats and I have seen these increase considerable over the last 6 months and often has one (either) flaming red ear (rim only), although he says it doesn't hurt. His diet is limited to very casin gluten oriented with the exception of loving fruit (no veg though). > > > > One red ear is often a sign of food intolerance. That is, the body cannot metabolize the food properly (or part of it). If his diet is as you say, I would most certainly try something like SCD for a few months to see what happens. > > > > If you believe your kid will need supplements to get better, and lots of kids do, the smartest thing to do in my opinion is to ensure your kid will take the supps. Use behavioural techniques to make it a non-issue over time. My son had huge sensory issues at the time, but I knew he'd need supps, and now he'll take anything. It is a lot easier when they are younger, and they are all younger today then they will be tomorrow. > > > > Anita > > > > > > > > > > Also we have bought a water filter tap but not sure this is enough re heavy metals. > > > > > > any deciphering of the above would be greatly appreciated and any suggestions welcomed. > > > > > > Quote Link to comment Share on other sites More sharing options...
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