Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 In a message dated 22/02/2006 14:35:43 GMT Standard Time, m.collins9@... writes: Any thoughts/suggestionsw would be welcomed. He's now 6 years old. >>>In your situation I would apply to Caudwell Charitable trust for funding for Biomed and see if you can get an appointment with Muscroft in Chester. She will work long distance after initiasl consult and certainly knows her stuff - she is Nutritionist of many years and aparent of formally affected child (I want to be one of those!!!) Caudwell seems to have some income limit on deciding whether to consider funding, if you pass through 'income' radar, they then ask for additonal info, bank statements, photo of child and confirmation of their issues. We are awaiting a decison now. Another mum I have been corresponding with has applied and listed tests and supps and they have queried who decided this. I think having a practitioner lined up and basic costing on tests would help you through more smoothly, mail me off list if you want to discuss if further. Great to hear H is coming on so much with the speech. Sam doesn't eat in a month, the amoutn of healthy stuff H eats in a day and he grows and doesn't get sick much and responds ordinarily - is that the supps or a red flag? Hmmmm Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 In a message dated 22/02/2006 14:35:43 GMT Standard Time, m.collins9@... writes: Any thoughts/suggestionsw would be welcomed. He's now 6 years old. >>>In your situation I would apply to Caudwell Charitable trust for funding for Biomed and see if you can get an appointment with Muscroft in Chester. She will work long distance after initiasl consult and certainly knows her stuff - she is Nutritionist of many years and aparent of formally affected child (I want to be one of those!!!) Caudwell seems to have some income limit on deciding whether to consider funding, if you pass through 'income' radar, they then ask for additonal info, bank statements, photo of child and confirmation of their issues. We are awaiting a decison now. Another mum I have been corresponding with has applied and listed tests and supps and they have queried who decided this. I think having a practitioner lined up and basic costing on tests would help you through more smoothly, mail me off list if you want to discuss if further. Great to hear H is coming on so much with the speech. Sam doesn't eat in a month, the amoutn of healthy stuff H eats in a day and he grows and doesn't get sick much and responds ordinarily - is that the supps or a red flag? Hmmmm Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 As some listmates will know, Henry was gfcf and on lots of supplements for some years, but I was never sure whether anything was having an effect and stopped in confusion after a nutritionist said the fish oils he'd been getting could be harming his brain. I am not sure what his biomed needs are ,as I have no money for testing, so shall have to rely on what I know so far about him in deciding where to start. He is full of vitality, warm hands and feet (I'm a chilly hypothyroid person), above 75th percentile for height and weight, eats enthusiastically - meat,fish, broccoli, peas, carrots, apples,pears,oranges, sheep's yoghurt. He also adores bacon and eggs, blueberry muffins and all things chocolatey. He seems to manage infectious illness in a normal manner - ie he gets a cold, gets a bit ill for a few days, then gets better. He had chicken pox at 2 3/4 and cropped a usual number of spots for five days, was a bit feverish, and recovered well. He doesn't seem particularly allergic to anything, apart from enzymes in washing powder and possibly MSG when he once had some dry roasted peanuts. I thought he had overflow diahorrea for years, but now he's out of nappies it's been a sudden change from 5-7 smears a day to a gargantuan poo ( proper log, either smooth or with cracks) every 2-3 days and NO SMEARS! I've actually seen him retract a stool by standing up and clenching, so it seems he's switched from simply making no attempt to control at all to holding on. Movicol once a day has been preventing constipation with the aim of training him to go once a day. He is obviously absorbing nutrients well because he is so well-grown and very strong indeed. He doesn't have bad breath or produce gas except when he's ill, and that's not often. He had Infantile Spasms as a baby which leaves 85% of survivors severly mentally retarded and many (most?) are later diagnosed with autism. How does he fit the toxic model? Seven weeks premature, I had syntocin and epidural. Two antibiotics at birth. Severe jaundice - he was still yellow when vaccinated at 2 weeks corrected age. Adverse reactions to DTPHib 1. severe local reactionswelling 2. same, with very high fever which counts as severe general reaction. Gave him paracetamol after immunisations. One episode of constipation the week befor his first vaccine. After that, no more constipation, but frequent mushy poo. Given dangerous drugs when his epilepsy developed, including paraldehyde and steroids at a potentially lethal level. At twelve months hair analysis showed huge amounts of lead. A blood test showed lead a double the paediatric reference level. My hair test showed huge amounts of lead,too, and I was still breastfeeding him. EEG became normal when vitamin B6 given. Tests done at Biolab and hair analyses at two separate labs showed mostly the same thing: low calcium and magnesium, zinc (even when supplemented for years on end). Also low B6, even when taking 300mg/day. Biotin deficiency. Fatty acid deficiency. When all the supplements stopped, his health didn't noticably deteriorate. I think stopping the B6 led to less disturbed sleep. However, his skin lost the wonderful sheen it had had with the EyeQ. Since stopping supplements and diet he has progressed well - he was terribly passive and not interested in books/videos/learning. He is still very mentally handicapped in all probability, even in a class of children with severe learning difficulty he seems to be one of the least intelligent, alas.He has gone from being non-verbal to quite a large vocabulary (although no real grammar - he's been taught a few stock phrases). Copies enthusiastically things he hears. His listening ability is much much better than it was. His ability to articulate words continues to improve. But his behaviour is very difficult - simple obsessions, slamming doors and gates, kicking car and shop doors, throwing marbles, or anything else he can get hold of. This is why I must start biomed again, to see whther his behaviour improves. It's very hard to engage him except entirely on his terms. On the go all the time. Haven't been able to chelate because can't get his Dad to cooperate. Realistically, the most I could manage to spend a month on biomed would be £100. He benefits from cranial osteopathy. He was born with a large head (macropcephalic - above 100th percentile). His head remains at the same percentile, but is now a better shape and his dental arch has developed nicely. My head is nearly at the 100th percentile and his Dad's is off the scale. Henry had frontal bossing (his forehead was sticking out) - the osteopath said this was because of jamming elsewhere in the skull which prevented normal growth - his brain could only grow forwards. Normal CT scan. MRI at 12 months may have shown some degree of white matter abnormality, but they thought the variation was within normal limits. After Infantile Spasms a study has shown that there are typically cold spots in the brain (areas of hypometabolism) so I should like to try hyperbaric oxygen therapy! His doesn't sound like the late onset autism at which the biomed is largely targeted, although I am certain he wasn't autistic at birth. Before he got ill and developed encephalopathy (about 4 months corrected age was the start of the decline)he was a smiling friendly baby. Suspect it was a combination of lead and the whooping cough vaccine with thiomersal which ****** his brain. Any thoughts/suggestionsw would be welcomed. He's now 6 years old. Thankyou, Margaret Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 I cant' begin to answer most of this but biomed doesn't have to cost more than £100 a month. If you're chelating (and that's contentious I know for you) you can get away with DMPS at £96 for a bottle that lasts several months on 8 hourly protocol. Can do biomed without the bells and whistles - and as he's clearly absorbing good stuff, given growth rate and general health, you might be fine tuning this engine biomedically rather than nourishing him which is something we're doing with Tom who is skinny, panda eyed and volatile. You might not need the whole biomed shebang but the bits that he is deficient in, help with the lead and things that generaly aren't found in what he's eating (we're all deficient in selenium for example) I'm really concerned about this fish oil damaging the brain - should we all be switching back to flax? FWIW Steph x > > As some listmates will know, Henry was gfcf and on lots of > supplements > for some years, but I was never sure whether anything was having an > effect and stopped in confusion after a nutritionist said the fish > oils he'd been getting could be harming his brain. > > I am not sure what his biomed needs are ,as I have no money for > testing, so shall have to rely on what I know so far about him in > deciding where to start. > > He is full of vitality, warm hands and feet (I'm a chilly > hypothyroid > person), above 75th percentile for height and weight, eats > enthusiastically - meat,fish, broccoli, peas, carrots, > apples,pears,oranges, sheep's yoghurt. He also adores bacon and > eggs, > blueberry muffins and all things chocolatey. He seems to manage > infectious illness in a normal manner - ie he gets a cold, gets a > bit > ill for a few days, then gets better. He had chicken pox at 2 3/4 > and > cropped a usual number of spots for five days, was a bit feverish, > and > recovered well. > > He doesn't seem particularly allergic to anything, apart from > enzymes > in washing powder and possibly MSG when he once had some dry roasted > peanuts. > > I thought he had overflow diahorrea for years, but now he's out of > nappies it's been a sudden change from 5-7 smears a day to a > gargantuan poo ( proper log, either smooth or with cracks) every 2- 3 > days and NO SMEARS! I've actually seen him retract a stool by > standing > up and clenching, so it seems he's switched from simply making no > attempt to control at all to holding on. Movicol once a day has been > preventing constipation with the aim of training him to go once a > day. > He is obviously absorbing nutrients well because he is so well- grown > and very strong indeed. He doesn't have bad breath or produce gas > except when he's ill, and that's not often. > > He had Infantile Spasms as a baby which leaves 85% of survivors > severly mentally retarded and many (most?) are later diagnosed with > autism. > > How does he fit the toxic model? > > Seven weeks premature, I had syntocin and epidural. Two antibiotics > at > birth. Severe jaundice - he was still yellow when vaccinated at 2 > weeks corrected age. Adverse reactions to DTPHib 1. severe local > reactionswelling 2. same, with very high fever which counts as > severe > general reaction. Gave him paracetamol after immunisations. One > episode of constipation the week befor his first vaccine. After > that, > no more constipation, but frequent mushy poo. > > Given dangerous drugs when his epilepsy developed, including > paraldehyde and steroids at a potentially lethal level. > > At twelve months hair analysis showed huge amounts of lead. A blood > test showed lead a double the paediatric reference level. My hair > test showed huge amounts of lead,too, and I was still breastfeeding > him. > > EEG became normal when vitamin B6 given. > > Tests done at Biolab and hair analyses at two separate labs showed > mostly the same thing: low calcium and magnesium, zinc (even when > supplemented for years on end). Also low B6, even when taking > 300mg/day. Biotin deficiency. Fatty acid deficiency. > > When all the supplements stopped, his health didn't noticably > deteriorate. I think stopping the B6 led to less disturbed sleep. > However, his skin lost the wonderful sheen it had had with the EyeQ. > > Since stopping supplements and diet he has progressed well - he was > terribly passive and not interested in books/videos/learning. He is > still very mentally handicapped in all probability, even in a class > of > children with severe learning difficulty he seems to be one of the > least intelligent, alas.He has gone from being non-verbal to quite a > large vocabulary (although no real grammar - he's been taught a few > stock phrases). Copies enthusiastically things he hears. His > listening ability is much much better than it was. His ability to > articulate words continues to improve. > > But his behaviour is very difficult - simple obsessions, slamming > doors and gates, kicking car and shop doors, throwing marbles, or > anything else he can get hold of. This is why I must start biomed > again, to see whther his behaviour improves. It's very hard to > engage him except entirely on his terms. On the go all the time. > > Haven't been able to chelate because can't get his Dad to cooperate. > Realistically, the most I could manage to spend a month on biomed > would be £100. > > He benefits from cranial osteopathy. He was born with a large head > (macropcephalic - above 100th percentile). His head remains at the > same percentile, but is now a better shape and his dental arch has > developed nicely. My head is nearly at the 100th percentile and his > Dad's > is off the scale. Henry had frontal bossing (his forehead was > sticking > out) - the osteopath said this was because of jamming elsewhere in > the > skull which prevented normal growth - his brain could only grow > forwards. Normal CT scan. MRI at 12 months may have shown some > degree > of white matter abnormality, but they thought the variation was > within > normal limits. After Infantile Spasms a study has shown that there > are typically cold spots in the brain (areas of hypometabolism) so I > should like to try hyperbaric oxygen therapy! > > His doesn't sound like the late onset autism at which the biomed is > largely targeted, although I am certain he wasn't autistic at birth. > Before he got ill and developed encephalopathy (about 4 months > corrected age was the start of the decline)he was a smiling friendly > baby. Suspect it was a combination of lead and the whooping cough > vaccine with thiomersal which ****** his brain. > > Any thoughts/suggestionsw would be welcomed. He's now 6 years old. > > Thankyou, > Margaret > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 I am thinking a Porphyrins test might focus high mind a bit - worked a buddy of mine, when her DH actually tested higher than the ASD kid...............got to get that funding! Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 Margaret, My son is lead toxic and this is my primary metals concern even though he shows toxicity in other metals as well. I'm not sure what it might take to get a partner on board for chelating, but the documentation on lead toxicity in children is massive. And the terrible effects it can have on the is no longer questioned. Perhaps some of this evidence would allow his Dad to see that chelation for lead would help his son. Chelating with oral DMSA is very cheap. A bottle, even for a 6 year old, would last a long time and the basic supps that you need to go with it aren't very pricey either. I've also been looking into other toxicities lately. I read Dr. Edelson's book " Conquering autism " and he speaks a great deal about the use of sauna and massage to removed the xenobiotic toxins (you mention a number of them). Ideally, of course, this kind of treatment should be done in a perfect sauna with a perfect team of professionals to help you through it. That won't be the way it happens at my house, and it might be something you could look into to help your son. There are clubs, etc that have saunas available that might fit the bill (not too toxic themselves to make matters worse, for one thing). When the nutritionist spoke of the fish oil harming him, was she referring to peroxidation or something else? I believe peroxidation is something we should have at the back of our minds, of course, but with lots of good E I don't think it is a common problem amoung autistic kids. Sorry I can't be of more help. Best wishes, Anita > > baby. Suspect it was a combination of lead and the whooping cough > vaccine with thiomersal which ****** his brain. > > Any thoughts/suggestionsw would be welcomed. He's now 6 years old. > > Thankyou, > Margaret > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 >Hi Margaret We discovered a natural chelator called Humet which is inexpensive. Derived from Hungarian Peatbogs- I know it sounds like snake oil, it has been used extensively in treating Alzheimer's and other conditions. Dr Heard has sanctioned its use and has said from looking through the extensive research on it, he believes it has much to offer. Essentially if we get more sanctioning from The Great Doctor than 'I have no experience of it....' this is a big enough green light for us. He seemed pretty encouraging about it but had not read all the pages of research we forwarded him. Not only does it chelate, it also supplements with Vanadium, molybdenum, selenium, Iron, ZInc, Magnesium, Potassium, Iron and Cobalt. Two instances of its use: 1 Someone featured on BBC Radio Cambridgeshire who cured her husband's Alzheimer's through using Humet. As there can be similarities between symptoms of the above and autism, it's worth looking at. This lady was featured on radio the day prior to Chris's interview on autism and that't how we discovered it. We can give you info on this, if requ'd 2 Friends whose 9 yr old non verbal son have been using the same supplements without any modification for 4 - 5 yrs saw a sudden increase in his desire to communicate and try and form words. All other variables remained the same. We think it is useful for . Google under Humet or get back for more info. Also you could collar at the Thoughtful House seminar..... he'll be there! All the best Rhona > As some listmates will know, Henry was gfcf and on lots of > supplements > for some years, but I was never sure whether anything was having an > effect and stopped in confusion after a nutritionist said the fish > oils he'd been getting could be harming his brain. > > I am not sure what his biomed needs are ,as I have no money for > testing, so shall have to rely on what I know so far about him in > deciding where to start. > > He is full of vitality, warm hands and feet (I'm a chilly > hypothyroid > person), above 75th percentile for height and weight, eats > enthusiastically - meat,fish, broccoli, peas, carrots, > apples,pears,oranges, sheep's yoghurt. He also adores bacon and > eggs, > blueberry muffins and all things chocolatey. He seems to manage > infectious illness in a normal manner - ie he gets a cold, gets a > bit > ill for a few days, then gets better. He had chicken pox at 2 3/4 > and > cropped a usual number of spots for five days, was a bit feverish, > and > recovered well. > > He doesn't seem particularly allergic to anything, apart from > enzymes > in washing powder and possibly MSG when he once had some dry roasted > peanuts. > > I thought he had overflow diahorrea for years, but now he's out of > nappies it's been a sudden change from 5-7 smears a day to a > gargantuan poo ( proper log, either smooth or with cracks) every 2- 3 > days and NO SMEARS! I've actually seen him retract a stool by > standing > up and clenching, so it seems he's switched from simply making no > attempt to control at all to holding on. Movicol once a day has been > preventing constipation with the aim of training him to go once a > day. > He is obviously absorbing nutrients well because he is so well- grown > and very strong indeed. He doesn't have bad breath or produce gas > except when he's ill, and that's not often. > > He had Infantile Spasms as a baby which leaves 85% of survivors > severly mentally retarded and many (most?) are later diagnosed with > autism. > > How does he fit the toxic model? > > Seven weeks premature, I had syntocin and epidural. Two antibiotics > at > birth. Severe jaundice - he was still yellow when vaccinated at 2 > weeks corrected age. Adverse reactions to DTPHib 1. severe local > reactionswelling 2. same, with very high fever which counts as > severe > general reaction. Gave him paracetamol after immunisations. One > episode of constipation the week befor his first vaccine. After > that, > no more constipation, but frequent mushy poo. > > Given dangerous drugs when his epilepsy developed, including > paraldehyde and steroids at a potentially lethal level. > > At twelve months hair analysis showed huge amounts of lead. A blood > test showed lead a double the paediatric reference level. My hair > test showed huge amounts of lead,too, and I was still breastfeeding > him. > > EEG became normal when vitamin B6 given. > > Tests done at Biolab and hair analyses at two separate labs showed > mostly the same thing: low calcium and magnesium, zinc (even when > supplemented for years on end). Also low B6, even when taking > 300mg/day. Biotin deficiency. Fatty acid deficiency. > > When all the supplements stopped, his health didn't noticably > deteriorate. I think stopping the B6 led to less disturbed sleep. > However, his skin lost the wonderful sheen it had had with the EyeQ. > > Since stopping supplements and diet he has progressed well - he was > terribly passive and not interested in books/videos/learning. He is > still very mentally handicapped in all probability, even in a class > of > children with severe learning difficulty he seems to be one of the > least intelligent, alas.He has gone from being non-verbal to quite a > large vocabulary (although no real grammar - he's been taught a few > stock phrases). Copies enthusiastically things he hears. His > listening ability is much much better than it was. His ability to > articulate words continues to improve. > > But his behaviour is very difficult - simple obsessions, slamming > doors and gates, kicking car and shop doors, throwing marbles, or > anything else he can get hold of. This is why I must start biomed > again, to see whther his behaviour improves. It's very hard to > engage him except entirely on his terms. On the go all the time. > > Haven't been able to chelate because can't get his Dad to cooperate. > Realistically, the most I could manage to spend a month on biomed > would be £100. > > He benefits from cranial osteopathy. He was born with a large head > (macropcephalic - above 100th percentile). His head remains at the > same percentile, but is now a better shape and his dental arch has > developed nicely. My head is nearly at the 100th percentile and his > Dad's > is off the scale. Henry had frontal bossing (his forehead was > sticking > out) - the osteopath said this was because of jamming elsewhere in > the > skull which prevented normal growth - his brain could only grow > forwards. Normal CT scan. MRI at 12 months may have shown some > degree > of white matter abnormality, but they thought the variation was > within > normal limits. After Infantile Spasms a study has shown that there > are typically cold spots in the brain (areas of hypometabolism) so I > should like to try hyperbaric oxygen therapy! > > His doesn't sound like the late onset autism at which the biomed is > largely targeted, although I am certain he wasn't autistic at birth. > Before he got ill and developed encephalopathy (about 4 months > corrected age was the start of the decline)he was a smiling friendly > baby. Suspect it was a combination of lead and the whooping cough > vaccine with thiomersal which ****** his brain. > > Any thoughts/suggestionsw would be welcomed. He's now 6 years old. > > Thankyou, > Margaret > Quote Link to comment Share on other sites More sharing options...
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