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SandraB

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Posts posted by SandraB

  1. Posted · Report reply

    I have been taking 5,000iu of vitamin D3 every day for around 3 months now. It really had an effect on my general mood and I could feel the difference after a week.

     

    Be sure to get the liquid capsules.

     

    Well worth a try IMO.

    Anyone interested in Vit D autism should look at the April Scientific American article http://www.scientificamerican.com/article....in-d-and-autism

    It focuses on the high incidence of autism amongst the Somali population in the US. An earlier study in Bristol found high levels of low Vit D deficiency amongst Somalis in Britain. This population seems to be showing extreme effects of Vit D deprivation because of skin colour filtering D absorption and covered-up dress due to their faith. However low Vit D in pregnancy does not just hit Somalis. There is US research in Pittsburgh, which would be a good deal sunnier than the UK, showing very high levels of Vit D deficiency in white women too. (Sorry, don't have the ref to hand but it would come up on a Google search.) Low intake of Vit D in pregnancy has been linked in the past to decreased birth weight, and there is some good evvidence that low birth weight increases the risk of autism. This low birth weight makes sense because the hormone that Vit. D turns into acts at the instestinne to control intestinal calcium absorption - it is essential to absorb calcium and phosphate. Intestinal absorption of calcium doubles in pregnancy, natch, because we are growing baby bones. It makes total sense that those bones might be lighter if we were low in Vit D, and there is also a reference to poorer tooth enamel as a result. This would all fit with the US research finding that autistic children in the States have thinner bones.

     

    Really pleased to hear Vit D is helping, Ultimatus. Where do you order it from? Internet?

     

     

  2. Posted · Report reply

    Hi there,

     

    I've been aware of this for some time, I still haven't had mine removed though, too expensive, I certainly think it is better when having your children's teeth done not to have the amalgam ones. My children have not got amalgam ones.

     

    I know in some other countries in europe particularly scandinavia it was illegal to put amalgam in the fillings many years ago when I first heard about it. I've heard of cases of people that improved from illnesses and long term bi polar when they had them removed. A friend of mine not autistic, csays she had improved cognitition after she had them removed

    Mercury in my many almagan fillings crossing to my son in the womb in a concentrated form, its action being intensified by testosterone, and causing brain damage, intensified by my low levels of Vit D in pregnancy would make a lot of sense in my case. (Asperger's son.) This might mean - let's take a guess - that the debate over injections could be something of a distraction from the real cause of some cases of autism, ie damage in the womb. (I didn't give him the MMR jab.) It could mean that the strong reaction so many parents have reported to some jabs - I feel sure they are not making it up - was because these children were already highly sensitised to mercury and responded strongly to an extra dose. They might posssibly - more guessing - have been on their way to Asperger's or HFA anyway as a result, but this extra dose caused more damage. That would explain why in some cases researchers debunking the jabs theory have said "there's evidence in the medical records that there were some concerns before the jab."

    If I were of an age to get pregnant again, I think I'd have all the mercury in my mouth removed well in advance, just in case.

  3. Posted · Report reply

    In December a paper was publushed entitled :

     

    Pediatric fatality secondary to EDTA chelation by Arla J. Baxter a; Edward P. Krenzelok in the journal of Clinical Toxicology:

     

    The summary is as follows:

     

     

     

     

    Simon

     

    Hi. LizK, I think you will find if you search a study which found that autistic children didn't have more mercury in their hair than normal. Some people believe this is because autistic children have a special difficulty in getting rid of mercury. However there is also an analysis of milk teeth from autistic children which found higher levels in the tooth than normal.

    There is also a study which found that the closer you got to US power plants (coal fired power plants are the major source of mercury in the US) the higher the rates of autism. So possibly one part of the cause of some cases of autism could be a low level exposure to mercury in the womb (forget the injections theory for now).

    There's a Feb 6 2004 Washington Post article which quotes a biochemist saying researchers recently have shown that mercury levels in umbilical cord blood are 70 per cent higher than those in the mother's blood. This could fit my child's case, I have v high levels of mercury fillings, but mercury is found in all kinds of places in the modern world.

    The research published today on cortisol and autism could fit in to this mercury theory - autistic children have lower levels than normal - if you search a bit you will find, for example, that fish from mercury contaminated pools have lower levels than normal.

    So how would we persuade the body to release mercury without resorting to the dangers of chelation? Or fight back against its harmful effects? I don't know, but if you read right through the paper on Vitamin D and autism on the Vitamin D council website you will find Dr Connell's hypothesis that checking Vit D levels then giving supplements or sunbathing safely till Vit D is up to a good level may help. (and he is not trying to sell a personal treatment clinic.)

    It could be that a combination of chronic low level mercury poisoning in the womb combined with a lack of Vit D, which may be v important for the immune system, is behind some cases of ASD. I could be talking total b******* but he is a v well qualified proper doctor and I think it is worth trying, not least because unlike chelation it is cheap and doesn't involve long expensive consultations. Have a look, see what you think. Sorry to bore on about Vit D (I don't have any financial interest in it!) but any line of hope that doesn't harm is surely worth investigating.

    Florrie, your info was v interesting, thank you.

     

     

  4. Posted · Report reply

    This part of an article is interesting:

     

    Immunological studies of autistic patients have revealed certain features that are also found in patients with other autoimmune diseases. There is a genetic predisposition for several autoimmune diseases6 , like grave's thyroid disease, rheumatoid arthritis, and insulin-dependant diabetes. Likewise, autism shows a greater concordance rate in monozygotic twins than in the normal population.7 Autism is also four to five times more prevalent in boys than in girls � a gender factor which is also seen in systemic lupus erythematosus (SLE), Grave's disease, and ankylosing spondylintis (though this is more common with women than men).

     

    I have rheumatiod arthritis and ankylosing spondylintis, it showed up in a blood test I had because of chronic pain in my joints. Is it saying that if you have these things then your child is more likely to be Autistic? I have idetical twins and have worries about one of them because she is very very shy and immature, is getting more like her brother in terms of understanding and over emotional plus her sister is far far ahead of her in all areas.

     

    I am wondering if I need to think about them all having blood tests done!

    It looks to me as though the high incidence of auto-immune conditions in relatives research hasn't been firmly stood up yet - some studies find no significant link. So I don't think you should worry - it certainly isn't as definite as "I have RA therefore I'm likely to have an autistic child." But research seems to be on-going into the theory that autism is an auto-immune disease itself.

    I found this on PubMed - I hope it's not one of the ones already cited above, please forgive me if so.

     

    Li X, Chauhan A, Sheikh AM, Patil S, Chauhan V, Li XM, Ji L, Brown T, Malik M.

    Department of Neurochemistry, NY State Institute for Basic Research in Developmental Disabilities, NY 10314, New York, United States.

     

    This study determined immune activities in the brain of ASD patients and matched normal subjects by examining cytokines in the brain tissue. Our results showed that proinflammatory cytokines (TNF-alpha, IL-6 and GM-CSF), Th1 cytokine (IFN-gamma) and chemokine (IL-8) were significantly increased in the brains of ASD patients compared with the controls. However the Th2 cytokines (IL-4, IL-5 and IL-10) showed no significant difference. The Th1/Th2 ratio was also significantly increased in ASD patients. Conclusion: ASD patients displayed an increased innate and adaptive immune response through the Th1 pathway, suggesting that localized brain inflammation and autoimmune disorder may be involved in the pathogenesis of ASD.

     

    PMID: 19157572 [PubMed - in process]

     

     

  5. Posted · Report reply

    A lack of any of the vitamins and minerals is detrimental to health.

    But taking more that you need will not do you any good and in some cases will do you harm.

     

    There are two point here .

    First to establish what is the right amount .

    Second do you have a defiance.(With out blood tests how do you know?)

     

    Food supplements is not a road I am willing to rush down unless there is an identifiable need.

     

    Just for the record, its a job to keep my son indoors, he loves playing in the garden and we walk miles every day.

    Perfectly reasonable objections. I'd love to do a blood test on him, but he has hypersensitivity to touch and pain and it took many hours to calm him down after his last blood take. It would be too traumatic for him to do at present. The NHS has been unable so far to provide a specialist dietician to help us on his diet.

    So how am I so sure that he has a deficiency (you wrote "defiance" but I think you mean deficiency?). Well I know that in the same way that I know without supplementing him he is deficient in B vitamins - because he has almost none in his very restricted diet.

    It is almost impossible to get enough D without eating large quantities of fish: he's vegetarian. The best way for him to get D would be from sun, but in Britain we are quite a high latitude, the same as Canada. You need strong summer midday sunlight in Britain (it's just the UVB rays that produce D in the skin, not any sunlight) without cloud cover or pollution to top up your D. A study published in the American Journal of Clinical Nutrition (E Hypponen 2007) found that in winter up to 60 per cent Brits had D levels that were sub optimal, and in apring up to 50 per cent.

    My son dislikes the sun: there can be no doubt that he is not getting sufficient D either from diet or sun exposure. His very low, almost emaciated weight, poor teeth etc all back that up. And I took no D3 supplements during my pregnancy, and I also didn't know breast milk was normally low in D3 so I didn't supplement him with D then, as the government now advises.

    It's great that your child loves the outdoors, but a high number of ASD children do prefer computers. And your child and mine will not have been getting any D from the sun during the winter however much he played outside for t he reasons explained above.

    Next, how much to supplement? Again, the best way would be to book a flight to Jamaica, but I can't afford that. "Toddlers and older children who do not go inthe the sun, should take 1000 - 2000 IU day depending on body weight." Cannell and others pub on Informa Health Care, Diagnosis and treatment of Vit D deficiency - sorry these refs aren't in the usual form, I'm doing them in a hurry.) They add "The present upper limit for medically unsupervised intake by adults and children over the age of one, set by the Insitute of Medicine's Food and Nutrition Board in 1997 is 2,000 IU a day.". That's not a UK board - you will see on http://www.patient.co.uk/showdoc/27001328/ the standard advice in the UK to prevent a deficiency is to supplement at 400, or possibly 800 if the person doesn't go into the sun. Quite a lot of experts think that's too low, but it will take years to do the studies to see for sure and meanwhile my son is not visibly not forming strong bones and teeth and muscle.

    So I'm supplementing at present (but only for eight weeks) at higher than the UK gov recommendation, but I'm doing so having read the literature on it, having considered the contraindications (including kidney stones, lymphoma) and having looked at the special circumstances of my son. And watching for contra-indications very carefully. But the results so far which I seem to see are all encouraging.

    My original question was, has anyone else tried it?

     

     

  6. Posted · Report reply

    This is something that I would be concerned about - and something that a risk of a school using multiple indiscriminate detentions - that your son may start to percieve the behaviour of the others as his friends and start to copy their behaviour as many ASD kids copy what others are doing as they see everyone laugh and think that this is how to behave to be "one of the gang"

     

    We have had a long and torrid experience of this with DD1/AS 13 - the local authority came up with the brilliant idea (NOT) of placing all of the ASD/EBD/ADHD kids in the same class - the result was chaos and DD1 started to copy this behaviour in order to "fit in". ( a little OT but we also found a huge gender bias - when the boys did something the teachers rollled their eyes in a boys will be boys manner - whereas when the girls did the same thing it was treated as a major crisis). The result was than after a year the class has reduced from 24 to just 13 pupils and only 2 girls. When DD1 left to go to the SEN unit her behaviour improved dramatically - but the class was just the same despite the fact that the head threw huge amounts of resources at the class.

    DaisyDot, it also sounds to me (having done a little teaching) as though your son is enjoying being part of his peer group - some of the class, perhaps quite a lot, are playing up and he may be enjoying being accepted by them, and being detained with the others consolidates his status as one of the group. So that's tricky to handle. You need to know if it is one particular teacher, and if so, what support that teacher is being given by the school - because if he or she is helped to deal with the main class troublemakers in a way which they DON'T enjoy then the whole problem will be solved. The Head of Department - eg Maths or English - may need to step in. If several teachers are giving detentions to this class, then you need to talk to the form teacher, who will be well aware that things are going badly. If this is a school with generally good behaviour then they should be able to sort it out.

    Good luck

     

  7. Posted · Report reply

    There's a relatively new theory that a lack of Vitamin D in pregnancy may be important in causing autism. It's explained at length on the Vitamin D Council website (just Google those words), which is American - there's been a lot of research there in the last decade on the importance of D, which goes way beyond helping to make strong bones.

    There is also a respectable recent US study which found that ASD children have bones of the same length as non ASD children, but 10 per cent thinner, (Google autism and thin bones and it comes up). It suggests that a lack of calcium and Vitamin D in the diet could be the cause. This is in the US, where milk is fortified with Vit D, so you would expect the problem to be worse in the UK, where v few foods are fortified by D3.

    The UK is on the same latitude as Canada and for six months of the year we can't make Vit D from sun on our skin. And of course ASD children, even in summer, are often inside in front of the computer a lot. It's very hard to get enough of it from diet, unless you eat tons of fish.

    Anyway, I've been supplementing my 11 year old son (thin, pale, v restricted diet, milk addicted) with 2,000 units of D3 a day (you can get 1,000 pills from some Holland & Barrets and Planet Organics, or the internet - look at the Vit D Council for guidance on safety of dosage, they give lots of references so you can make your own mind up.) And I think I am really seeing big improvements in mood, concentration, pink cheeks, warm hands, anxiety has gone right down. I see one or two reports on websites like this of other parents finding the same. Anyone else on this forum tried it?

     

  8. Posted · Report reply

    My lad has a fairly poor diet, although it has improved as he's gotten older. I give him a multi-vitamin and mineral tablet each day just to make sure he's not deficient in anything.

     

    ~ Mel ~

     

    I have just started giving my son some iron supplements - the Spatone recommended elsewhere on this site. This is because he is a militant vegetarian who will not eat vegetables, and also drinks huge amounts of milk which I now realise contains little iron and makes iron absorption harder. Trying to read up on this I came across this on the website for the US Office of Dietary Supplements, which seems to be an official and very thorough site.

     

    "Signs of iron deficiency anemia include [1,5-6,42]:

    feeling tired and weak

    decreased work and school performance

    slow cognitive and social development during childhood

    difficulty maintaining body temperature

    decreased immune function, which increases susceptibility to infection

    glossitis (an inflamed tongue)"

     

    I don't think we've got the tongue - but I was amazed by this list.."slow cognitive and SOCIAL development in childhood" "decreased work and school performance" - doesn't that ring bells? Decreased immune function.... yes, seems some studies say immune function is affected. Could removing milk from the diet increase iron absorption and be one of the reasons why so many parents report improvement from the milk free diet?

  9. Posted · Report reply

    Does anyone use Oat-based cereals on GF diets?

     

    I know oats themselves don't contain gluten, but there is a considered risk of contamination.

     

    I'm thinking of Rice Krispies Multi-grain which only contain an allergy warning of "contains oats" and appear to be GF/CF in all other respects.

     

    I've heard a lot of comments about Rice Krispies also - but most I've seen use Barley Malt Extract. Are there any out there (other than Envirokids which my kids don't like) that are like "real" Rice Krispies without barley malt?

     

    Thanks

    flipper

    You are right in that studies suggest that oats are safe for celiacs. Celiac.com has a lot on this on its site. Whether children with autism who react to gluten can take oats is probably untested - celiacs and autistics don't necessarily have the same reaction, I suppose. The answer would be to try a diet that excludes all gluten and then try an oat biscuit and see if there is a reaction, I guess. You are right about contamination as well - some farmers who grow oats may have grown other grains on the same field in the past, and there may be small patches of the old crop in there. However I am very sensitive to wheat/rye/barley and blow up like a six month pregnancy when I eat even tiny amounts, (eg in raw almonds which have been dusted with the stuff) and I've never had that reaction with the best known brands of Scots oat biscuits - the farmers probably grow them on the same land year after year. I can eat main brand oat cereals too.

    Barley malt is a real pain, isn't it. Smuggled into the most unexpected foods.

  10. Posted · Report reply

    DD has AS and IBS as well. She also has had Chronic Fatigue Syndrome/ME for the past 2 years.

     

    There is some research reported by the BBC on the web (search auto-immune/autism/rhematoid), a small study showing that children with autism appear more likely to have relatives with auto-immune diseases, inc rhematoid arthritis - they don't mention celiac disease, but of course that is an important one.

    The new study quoted is really interesting to me. I have a cousin whose child has celiac disease. I am myself intolerant to gluten - don't know if I have celiac or not. I have a child with Asperger's. And I have two extremely close relatives suffering chronic cancers of the immune system. Chronic Lymphoctyic Leukaemia. Characterised by raised levels of white B cells. Look what it says about B cells in this study. These problems all go up my maternal line - that's where the genetic flaw is.

    The reaction of the medical establishment is "hey, we can use drugs to treat autism" but the reaction surely ought to be - these are clues which may lead us to the trigger. What is triggering the CLL/SLL? What is triggering autism? Because as far as I understand it, you have the genetic susceptibility but you need a trigger too. In celiac disease eating wheat/rye/barley is the trigger.

    Might it be worth doing an on-line anon. survey of contributors to this forum to see if we have high numbers of auto-immune diseases in our families too? It might increase the pressure for a properly funded study.

    Just a thought...

  11. Posted · Report reply

    Hi there

     

    As you were kind enough to give me advice I though I'd post an update on how we are doing with my sons gluten free diet.

     

    Basically I persevered with finding enough things he would eat, made up a menu, bought a breadmaker and a couple of books and as of last week he is gluten free! His diet is very restricted so I give him omega oils and a vitamin and mineral supplement. He goes to Nursery 3 days a week and I have got them on board and am supplying 90% of his food for them.

     

    The best breakthrough has been buying a breadmaker, not only cause I love it for our ordinary loaves, but it has allowed me to experiment a bit, which I would never have got the energy to do if I had to make them by hand. So I have tried various bread mixes, GF bread flour and yesterday received my internet order of various GF flours to make my own mix (from a book) and see how that goes. Today I tried the mixing in a banana idea and its turned out not too bad - it needed be cooked longer tho.

     

    I also asked the GP about getting anything on prescription and he seems generally open to the idea, which would be welcome as all this is costing a bomb - but I suppose that partially what the DLA money is for!

     

    Anyway, just need to see now whether it helps. I'm not pinning too much hope on it, but it worth a try for a year to see what happens.

     

    So thanks folks, we have got there (just about) I just have to crack to holy grail of a bread he will eat without Nutella etc on it and one other alternative main meal (at the moment GF fishfingers, potato waffle and beans is it) and it will be as varied as his diet ever was before - ie not very 8-) and I will be satisfied.

     

    So thanks again.

    x

    custard

     

    Just a thought - try buckwheat pasta. Health food shops should have it. I find corn and rice pasta too slimy, but buckwheat is great, and is nutritious because it is a vegetable, not a grain. My son will sometimes eat it too. Worth a go - I have never found it in a supermarket, sadly.

  12. Posted · Report reply

    :thumbs: I was really surprised at the above, as that brand wasn't in the past...

    Now do a fair range that are okay, including one with a very Harry Hill's TV Burp style name!

    I've sent PA a link to their website (no direct links to commercial websites, please :) ), but it's easy enough to find with a search engine if anyone else is interested :)

     

    BD :D

    Precious Alfie - has the improvement continued? An improvement could happen as quickly as you describe. Did you have your son tested for celiac disease before you cut out gluten? In a very small number of cases children who have celiac disease may show behavioural symptoms which are very close to, or identical to autism (I was told this by one of the top celiac researchers/doctors in the US). When gluten is cut out, the child changes dramatically. I understand that this is REALLY rare. And I've read and been told that there is no greater incidence of celiac disease amongst autistic children than the population at large - ie, it would run at 1 in 100. (Very few people with celiac disease get diagnosed. - so some of us will have celiacs in the family or even be celiacs ourselves without realising it.) Celiac is NOT the cause of autism. But in a small number of cases it may produce similar symptoms - clinginess, anxiety, irritability etc.

    The fact that your child reacted so fast to a gluten free diet doesn't necessarily mean he/she is celiac, but you should be aware of the possibility. When he/she is older you might like to do a gluten challenge after talking to your doctor, (putting him/her back on bread etc for several weeks) so that a blood check can be run. They can't check for celiac disease unless the patient is eating quite a lot of gluten.

    A member of my family has celiac disease, I'm intolerant of gluten (but won't do the gluten challenge because I can't bear the symptoms and I don't want to risk further damage - I just stay off the stuff) and my son has Aspergers. So I'm deeply interested in all this. He was tested for celiac but was clear. I would have been thrilled if he had had celiac because it is the only auto-immune disease for which there is a known and simple cure - don't eat gluten.

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