Autism and folinic acid: ... - Pernicious Anaemi...

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Autism and folinic acid

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arkansasmatters.com/news/lo...

A finding on folate and autism which may interest those with B12 issues, since they are so intertwined, who have relatives on the spectrum.

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36 Replies
fbirder profile image
fbirder

Very interesting. Here's a link to the full paper -

nature.com/mp/journal/vaop/...

in reply to fbirder

Thanks. I wonder if this high incidence of low folate in the cerebral-spinal fluid might link to the low levels of B12 there, found in another study of autism.

The great thing about this study is that it suggests an intervention anyone could try for a bit to see if there is a treatment effect...

JanD236 profile image
JanD236 in reply to

Thanks for the link which was interesting reading as I have a granddaughter with autism.

Aspmama di you have a link to B12 and autism study?

in reply to JanD236

Sorry, I didn't manage a link, if you google low b12 autism wanjek a report of it will come up. Looked at post mortem brains, the ASDs were under 10, they had one third the levels of normal peers.

So my guess is that very low B12 as a child might show itself in autistic symptoms.

There is also a recent small study showing B12 helps some children with ASD.

Low iron in the brain has been associated with ADHD, and ADD or ADHD is a symptom which overlaps with autism. Of course low brain iron theoretically might mean that the brain is low in anti oxidants, and is deliberately restricting the amount of iron it lets in, since it is potentially damaging.

It is interesting that some adults with PA report autistic type feelings.

fbirder profile image
fbirder in reply to

if you google low b12 autism wanjek a report of it will come up

I did and it said this...

There has been no definitive study, however, indicating that autism and schizophrenia can be caused by a deficiency or treated through vitamin supplementation.

In fact, a study published last year in the Journal of the Academy of Nutrition and Dietetic found that few children with autism benefit from vitamin supplements and may be at risk for overdosing.

in reply to fbirder

The first bit is true, though autism is such a subjective diagnosis that we may be talking about a whole range of conditions which are labelled autism because children with them have problems with social interaction. I think we would be talking here about subgroups which might have folate or B12 problems. (There has been little attempt to sort out sub groups through symptoms or biochemistry).

If I am right about widely differing subgroups, no single cause for "autism" will ever be found.

Low B vitamins in mothers have been associated with a higher risk of autism in more than one study. A treatment effect is found for folinic acid in this study where receptors are affected, and there seems to be a higher proportion in "autism" of deficient folate receptors. One study has also found a treatment effect in B12, again, no doubt, if further studies stand this up this will be a sub section.

You might imagine that children are thoroughly screened to exclude physical problems before diagnosis of autism, but this is not the case. My son had a panel of a few blood tests which came back as normal, no figures given... I realise now that their ranges were not reliable, that he was probably bottom of the range in some of them, and that serum tests are very far from the whole story.

fbirder profile image
fbirder

I thought it best to summarise a few important points.

The researchers postulated that one cause of lof folate in the CSF may be because of antibodies to the Folate Receptor FRα (FRAA). This normally transports folate across the membrane to get into the brain. So people with these antibodies can have high serum levels of folate but low levels in the CFS.

Folinic acid is a different chemical to folic acid and other types of folate (although it is structurally similar and it can work in the same reactions as other folates). It seems that this chemical can get into the brain to rectify the problems caused by low folate, even in the presence of FRAA.

Children without FRAA did not benefit from folinic acid.

Lorstor profile image
Lorstor

Interesting...as I have low B12 and have 2 DAUGhTERS with autism and low B12.

in reply to Lorstor

Hi... have you trialled B12 injections for them? My son has Aspergers and my daughter, who is neurotypical, has just tested for B12 at 159... despite supplementing high level methylc in the summer term.

When I first gave my son methylfolate I thought I saw improvements, and more on methylcob supps, but it is hard to be sure. A huge number of his symptoms might link to low iron and low B12. My only chance of drs considering it is if my daughter is positive for intrinsic factor though. There is no chance of his tolerating injections, I am trialling patches.

Palizmine profile image
Palizmine

They showed that the rate of Autism for Children of Military Service members went from normal to 67% after the Gulf war making me wonder what it was going on that caused that kind of a jump!

We found that 5HTC works better for my aspies anxiety than the nightmarish drugs on the market that cause so many issues her anxiety starts looking good

fbirder profile image
fbirder in reply to Palizmine

What is 5HTC?

in reply to fbirder

5htp, hydroxytryptophan, comes from l tryptophan. Tryptophan levels have from memory been repeatedly been found low in " autism".

fbirder profile image
fbirder in reply to

Ah! I hadn't thought of 5HTP. It's a prodrug for serotonin, so should have similar effects, although a different side-effect profile to SSRIs.

Interesting. I didn't know it was being used therapeutically.

Thanks

in reply to fbirder

Only amongst those who believe 'supplements' are a cure for autism. Some parents will stuff anything they are told is effective into autistic children and adults. Industrial bleach comes to mind, called MMS or CDM. You are doing your Natropathy so this will be right up your alley of lucrative interventions to sell.

By the way. As homeopathy is part of naturopathy, can you explain how water can retain a 'memory' of an 'active' ingredient and forget all the faecal matter it has had in it? Even industrially distilled water retains up to 0.001 of matter that was present before distillation and that is around the levels of wonder ingredient homeopaths 'prescribe'... So where does all the crap go?

in reply to Palizmine

"They showed that the rate of Autism for Children of Military Service members went from normal to 67% after the Gulf war making me wonder what it was going on that caused that kind of a jump!"

Proof needed please. Where was this article or study to which you refer? I grew up as a forces brat, so are you referring to the spike in shut-in behaviour shown by children of veterans with PTSD? Shut-in is not autism and you do not suddenly develop it after your parent has gone to war. It is a lifelong developmental disability that is something you are born with. 1:68 is about the level bandied about in the states, but no other country has been able to find a rate over 1:100 to 1:88.

Lorstor profile image
Lorstor

I find all this very interesting as I navigate the constant struggles with Autism for my girls.

My older daughter spent the last three years living a nightmare. In 2013 I was told she had low B12 and they started giving her monthly injections. My happy go lucky 20 year olds personality over the next 2 years continued to go downhill. She completely stopped talking and shut down. In October of 2015 she had dental surgery for a wisdom tooth and after that started having periods of nonstop crying. Lost her appetite and seemed unwell. Kept taking her to doctor with no answers! In March of 2016 the doctor sent us to gastro Bc the B12 level was not coming up. She was diagnosed with pernicious anemia and we were told to continue with monthly B12 shots??

By May 2016 she stopped sleeping and eating with severe anxiety and screamed and cried nonstop. We were sent to psychiatrist and told she was having a nervous breakdown. Many times I told the psychiatrist that she had pernicious anemia but he continued to add and up antidepressants and anxiety meds. All the meds did were to make her gain 80 pounds and she did not get any better. It was time to get a new primary Doctor! And lucky I found an amazing Doctor for her that listened to us!

After all new blood work and the Doctor researching she started her on daily Cyancobalium injections. Amazing within 5 days she started to seem so much better. After the 7 days of injections we had planned to go to weekly but 5 days off of shots she started crying nonstop again. The Doctor started her back on daily injections and within a couple days she started doing better again. The Doctor had more bloodwork done and my daughter was compound heterozygous for the MTHFR. I know there is much question about this...but after starting my daughter on daily sublingual methylcobalamin, 5MTHF, and B6 the change was remarkable! Within 2 weeks we had our daughter back! Talking, sleeping and able to function in the world!

We have slowly weened her off all the psych meds that did not help. I am sorry this was so long😜

in reply to Lorstor

Thank you for posting, that is an amazing story. Well done for refusing to listen to your psych and getting her proper treatment for her PA.

May I ask some questions which would help me, and no doubt others, as I search for clues for my son.

Do you think you may have PA yourself, or rather, the autoimmune gastritis which can lead to PA? Or autoimmune thyroid disease? Do you think it is possible that you had either of these undiagnosed while pregnant?

I ask because I think I may have had either or both while pregnant, and certainly that my nutrient levels would have been v low then.

Did your daughter develop a circadian rhythm disorder, tinnintus or Restless Leg Syndrome at any point?

Have your other daughter's antibodies been checked?

Since proper B12 treatment, is your daughter better than she was at diagnosis?

How is her ferritin level, and did she have macrocytic or microcytic anaemia?

I suspect that you are in the USA. Here in the UK I think few ASDs would have b12 checks, and almost none antibody checks. The suspicion of physical illness in ASD is almost non existent, in my experience.

Lorstor profile image
Lorstor in reply to

Yes I am from the US! And feeling very fortunate that was able to get my daughter the help she needed. She continues to do better everyday but I understand it will take awhile. Her B12 was low for along time. I recognize that although I am trying to educate myself I have so much to learn.

I can not tell you if she had any of the symptoms you asked about. She had stopped communicating and was not saying anything beyond "I don't feel good" and she would say her stomach hurt on the upper left side and around that side of her back. She basically just cried nonstop. I could not find any test of her ferritin level being checked so will have to check into that. Also, was not familiar with hydroxytryptohan so looking into that too!

My younger daughter still goes to a pediatrician so a different Doctor. I asked her to run some bloodwork and her B12 was 249. She tried to tell me that was adequate. Neurologist in the US state that anything under 400 should be treated. A lot of her bloodwork was off. Platelets were low and size of platelets was large. Also her red blood cell size was not normal. She was also diagnosed with IgA deficiency.

Needless to say, I am in the process of having her switched to the new doctor that we found for her sister.

I myself have been treated for thyroid disorder and low B12 for the past 18 years. I would definitely say I was exhibiting symptoms of both before I got pregnant. Both pregnancys were difficult and both girls were premature. The doctors say that has nothing to do with the Autism. I also have rheumatoid arthritis which I have had for at least 15 years. I was recently tested for the MTHFR gene and I am homozygous. My older daughter was compound heterozygous. Still trying to understand what role if any it plays in all this. There is much controversy on what part it plays in the methylation process.

Don't know if any of this helps. Let me know if there are other things I should be looking into?

fbirder profile image
fbirder in reply to Lorstor

Also her red blood cell size was not normal

Too large, or too small. The former is an indication of B12 or folate deficiency and needs to be treated. The latter can have several causes, including iron deficiency, and needs to be treated.

was recently tested for the MTHFR gene and I am homozygous. My older daughter was compound heterozygous.

I, too, am homozygous for the C677>T mutation (the only one that's been studied properly). That means that the MTHFR enzyme is only about 30% as efficient at producing methylfolate as in non-mutants. Being heterozygous means it's 80% efficient - which should make no difference.

The body has ways of getting around these problems (like making more of the enzyme) but homozygous people may find some benefit in taking methylfolate as a supplement. As this is the product of the MTHFR enzyme it should bypass any and all possible problems.

Lorstor profile image
Lorstor in reply to fbirder

So her red blood cells were within range:

4.60 range 4.20-5.40

But these levels low:

MCH 25.7 range 28-34

mCHC 31 range 32-36

Also platelets were 150 range is 150-450

MPV 13.5 high

Range is 9-12

b12 was 240

Folate was 16 which says normal but does not give range.

As I said before, pediatrician said everything is fine even though I told her that my daughter sleeps all the time now. It is so hard when you have a child that can not communicate how she is feeling. My younger daughter is nonverbal with Autism and is also Deaf. I am in the process of switching her to my older daughters doctor. Any thoughts?

in reply to Lorstor

mch low could be microcytic anaemia? low iron.. she may have an absorption problem..

in reply to

ncbi.nlm.nih.gov/pubmed/171...

shows that microcytic anaemia in young women does not rule out PA.

Lorstor profile image
Lorstor in reply to fbirder

I was told that compound heterozygous reduces to 30% also?

fbirder profile image
fbirder in reply to Lorstor

Yes, I've read that. However, I've not been able to find any reliable source, just speculation marketed as fact.

in reply to Lorstor

Well the drs are ill informed, there are studies showing links between low thyroid function and autism in babies, I will send links when I have a mo.

I have had a full thyroid panel taken for both my children, including antibodies. I did this with private tests. My son has a T3 above the range, otherwise fine, my daughter,s TSH is rising and her antibodies are rising though still below range. I intend to test her every year so that I catch her the minute she becomes provably hypothyroid. She is gluten free by choice.

Ferritin is important to watch, especially in menstruating girls. I read one medical paper which said that PA could be present with microcytic anaemia and low iron in young women. I will try to find it.

PS So the v wise fbirder's comments suggest you may have been low in folate in pregnancy? Without knowing it....

Lorstor profile image
Lorstor in reply to

Getting the MTHFR diagnosis explained many many miscarriages during my childbearing years! Wondering if and how the prematurity of both girls and Autism may be a result of this somehow??? maybe someday they will figure that out?

fbirder profile image
fbirder in reply to Lorstor

If you read my thread about genetic testing I discuss studies associating genes and autism. I'm homozygous for no less than 6 mutations supposedly associated with autism. I'm not autistic.

They've got a long way to go and a mountain of rubbish to sort through first.

in reply to fbirder

I'm sure you're right - but even if the speculators were right I wouldn't expect you to be autistic, but if you were female I think your child might have a high risk of problems which might be diagnosed as autism.

fbirder profile image
fbirder in reply to

Why would my child be more likely? If anything my 'nasty' mutations would be likely to be diluted by my partner's healthy versions of those geens.

in reply to fbirder

Because your child would be more likely to have insufficient folate in the womb. It might not - dependent on supplementation and diet - but it would be at higher risk.

fbirder profile image
fbirder in reply to

Ah! I see. That assumes that it is maternal folate during gestation that is an influence on autism in their children. And, I must admit, that sounds a reasonable assumption.

I wonder how many of the studies linking MTHFR C677>T with autism looked at the subjects genes or the maternal genes.

in reply to fbirder

Yes, and I think it wouldn't be the cause of all "autism", just a sub section.

fbirder profile image
fbirder in reply to

Oh, yes. If MTHFR was the cause for autism then it would be obvious already. For a start, my mother (also C677>T homozygous) would have had three autistic children, instead of the none she got.

in reply to fbirder

ncbi.nlm.nih.gov/pubmed/262...

It seems to be considered at length here, but I can only read the summary.

fbirder profile image
fbirder in reply to

Full text is here - researchgate.net/publicatio...

But the section on genetics is mainly speculation and a call for further studies to include genetic info.

in reply to

ncbi.nlm.nih.gov/pubmed/246...

is one huge Danish study finding that there is an increased risk for ASD when hypothyroidism is diagnosed after the birth. Thyroid conditions diagnosed and treated before pregnancies did not affect outcomes. The authors speculate that lack of thyroid hormone during pregnancy may be the cause, but the effect of hypoT on absorption of nutrients might in my humble view be a secondary cause.

There are more studies I will find for you.

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