Supplements for ADHD

[nature girl]

At this point my daughter is gf/cf. She also eats few to no preservatives or additives (although I'm not sure that makes much difference for us, she found a pack of M&M's in my husband's desk last week and ate quite a few of them, but we didn't notice any marked behavior changes. Are some ADHD kids not affected, and we just hear about the ones who are?)

Anyway, I'm giving my daughter Ca with Mg (250mg), a multivitamin that includes 5mg of Zinc (Should we supplement with more zinc?), fish oil (740 EPA and 475 DHA), and I recently started a supplement that includes Phosphatidylserine. Things are MAYBE better, at least at home she seems more manageable and less argumentative/impulsive (but I'm not convinced this isn't just a placebo effect...Taking her out is still difficult, she tends to bolt, talks non-stop to strangers, tries to climb store shelves, stack groceries, etc.) So I'm looking for more things to try that might make this manageable before we get our neuropsych eval and then probably start therapy next month. Questions:

 

• I'd like to add a B complex. Does anyone have a chewable that they could recommend?
• Has anyone tried L-Tyrosine? I've seen a number of articles, but not much about safety, especially in children.
• Has anyone had luck with essential oil blends? Rhodiola? Pycnogenol?
• Anything else you've tried that you think has made a difference?

We're new to all this, and I guess I'm basically trying to throw the kitchen sink at this kid to see how far we can take her naturally...

[Tiramisu]

I think one thing to remember is to introduce one new thing at a time, with two or three weeks between adding anything new, so you know what it is that helps or is giving a bad side effect.

 

I tried pycnogenol for myself and it gave me palpitations, I think. I'd like to try it again to be sure but that experience made me nervous about using it. 

 

B12 calmed my mind, but I was truly deficient at the time.

 

Probiotics have been proven to reduce anxiety. If your dd isn't taking one, you might want to research that. Perhaps it might calm her system.

 

Also, I'd recommend allergy testing. It couldn't hurt. I have one dd who I couldn't take out for years because her impulsivity, and she tested positive for allergies years later. 

[ondreeuh]

First of all, yes, some kids do not have behavioral changes due to food colorings or additives. I wonder if you have been reading books or websites that try to debunk ADHD as a medical diagnosis, and that is why you seem surprised? Some symptoms of ADHD like inattention and hypermobility can be caused by food or chemical sensitivities, sleep disorders, seizure activity, sensory processing disorder, etc. For those people, working out those issues can relieve their symptoms. But there really, truly are people who do not have any underlying disorders yet have ADHD symptoms (and those are the ones I say who have *real* ADHD).

 

Since you are exploring all avenues right now, you could ask for an EEG to look at your daughter's brainwave activity, an MRI to look for structural defects in the brain, a sleep study to evaluate the quality of her sleep, and food allergy testing. I've had all of that done between my two boys. The one thing I haven't done that I really wish I could do is a functional MRI which shows exactly how the brain responds to stimuli, but that's not something doctors order for this kind of thing. Anyway, everything was ruled out and/or treated (one kid did have sleep apnea) and the ADHD symptoms persisted. I think that the MTHFR mutation can cause some mood/behavior issues, but we're all negative for that anyway.

 

Supplements and special diets have never had any effect on my ADHD kids. My youngest rarely has food coloring, but he had a bottle of Hawaiian Punch recently and barfed it all up, so clearly his system didn't like it. He had no behavioral changes, though. Stimulants all but "cure" their symptoms and the side effects are so worth it. My youngest has a lowered appetite so we have to work harder to get enough food in him, and both boys need help sleeping.

 

I understand the desire to do things in the least invasive way possible, but trying to do "natural" versus pharmaceutical is a false dichotomy. Some natural stuff is harmful or causes more issues. Some pharmaceutical stuff has is very effective with minimal risks. My youngest gets way more touchy when he takes fish oils, for example.

 

[Orthodox6]

First of all, yes, some kids do not have behavioral changes due to food colorings or additives. I wonder if you have been reading books or websites that try to debunk ADHD as a medical diagnosis, and that is why you seem surprised? Some symptoms of ADHD like inattention and hypermobility can be caused by food or chemical sensitivities, sleep disorders, seizure activity, sensory processing disorder, etc. For those people, working out those issues can relieve their symptoms. But there really, truly are people who do not have any underlying disorders yet have ADHD symptoms (and those are the ones I say who have *real* ADHD).

 

Since you are exploring all avenues right now, you could ask for an EEG to look at your daughter's brainwave activity, an MRI to look for structural defects in the brain, a sleep study to evaluate the quality of her sleep, and food allergy testing. I've had all of that done between my two boys. The one thing I haven't done that I really wish I could do is a functional MRI which shows exactly how the brain responds to stimuli, but that's not something doctors order for this kind of thing. Anyway, everything was ruled out and/or treated (one kid did have sleep apnea) and the ADHD symptoms persisted. I think that the MTHFR mutation can cause some mood/behavior issues, but we're all negative for that anyway.

 

Supplements and special diets have never had any effect on my ADHD kids. My youngest rarely has food coloring, but he had a bottle of Hawaiian Punch recently and barfed it all up, so clearly his system didn't like it. He had no behavioral changes, though. Stimulants all but "cure" their symptoms and the side effects are so worth it. My youngest has a lowered appetite so we have to work harder to get enough food in him, and both boys need help sleeping.

 

I understand the desire to do things in the least invasive way possible, but trying to do "natural" versus pharmaceutical is a false dichotomy. Some natural stuff is harmful or causes more issues. Some pharmaceutical stuff has is very effective with minimal risks. My youngest gets way more touchy when he takes fish oils, for example.

 

Thank you for so balanced a viewpoint!  I rarely find this among discussants.

 

Sadly (for myself), I am a "real" ADHD adult (mixed-type). 

 

 

[Orthodox6]

( dp )

[PeterPan]

If I give my ds junk (pop, junk, etc. etc.), his behavior will be *worse*, but removing those things doesn't make the ADHD go away.  Nor is b complex or zinc going to make it go away.  I give my ds a calcium supplement because he doesn't drink milk, and flax oil for the omega 3 because it noticeably helps his speech.  His a little calmer with them, but either way he's still ADHD.

 

So sure, if your dc has nutrient deficiencies, give them the supplements, but it's not going to make the ADHD go away.  It might bring things into the realm of what you're willing to tolerate, but this is a significant brain difference and with all kinds of things going on (sensory, midline issues, differences in how they process, processing speed, etc.).  None of those things are going away with any of those supplements.  

 

I give my kids Calm Child sometimes when things get a little too hard to handle.  It has a mixture of calming herbs and I've read of people giving it all the time for ADHD.  I personally wouldn't do that, just me.  I use it to help them unwind when they're too wound up and can't self-regulate and get back to a peaceful state.  

 

I'm kind of surprised you didn't notice anything with the caffeine in the chocolate.  Does she eat/drink other sources of caffeine?  That's one to watch.

[ondreeuh]

OhE's comment about the caffeine in chocolate reminded me of something that happened about 4 years ago. My older son was 10, and was without meds for a day while we had a travel delay. He was so bananas that I finally went to the grocery store and got some Monster energy drinks. I was hoping the caffeine would slow him down a bit but there wasn't any noticeable difference. Stimulant meds do help him wonderfully, though. So it's probable that the amount of caffeine needed to really offset ADHD symptoms is more than you're going to get in chocolate or energy drinks.

 

You know how they say that ADHD doesn't exist in certain cultures? I've always supposed that it has more to do with the definition and diagnosis (this is true in France, I believe) but now I'm thinking about how kids drink coffee and tea in many cultures, and maybe that mellows some of them out too.

[PeterPan]

That's interesting.  My dd tried caffeine two summers ago, and the amount to improve her focus left her jittery. 

[Guest]

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Edited June 22, 2016 by Guest

[Crimson Wife]

At various times, our integrative neurodevelopmental pediatrician had us try low oxalate, low phenol, and a very strict grain-free elimination diet. None of them worked for my DD (and low phenol actually made her MORE hyper) but I think they are worth trying prior to pharmaceuticals.

 

No-fenol supplement from Houston Enzymes went with the low phenol diet. I can't remember if there were any enzymes to take with low oxalate because it was several years ago that we tried it.

[Guest]

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Edited June 22, 2016 by Guest

[Crimson Wife]

I can most certainly see trying supplements under the guidance of a doctor.

 

You want someone who has training in either integrative medicine or naturopathic medicine. Most MD's don't know anything about nutritional approaches to treat ADHD or autism.

 

The Medical Academy of Pediatric Special Needs has a directory of healthcare practitioners that is good but not exhaustive: http://www.medmaps.org/clinician-directory/

 

Our integrative dr. isn't affilated with MAPS but he is a graduate of Dr. Weil's training program at the University of AZ. He's listed on Dr. Weil's recommended practitioners list: http://www.drweil.com/drw/u/PAG00110/Dr-Weil-Like-Minded-Practitioners.html

 

[Ottakee]

For fish oils we go for 1000mg of EPA per day. We use 2 of the country life omega 3 mood.

 

That helps. The thing is, for my kids, meds make about 90% of the difference and the supplements the other 10%.

[nature girl]

Thanks for all the comments and suggestions! I'm not expecting miracles from dietary changes and supplementation, I know they're not a cure, but I've read a lot of (mostly anecdotal, but some research) evidence that shows finding the right elimination and/or supplementation can be helpful for many kids. We may very well try meds if I find the next several months unmanageable, but at this point she's very happy and things aren't out of hand, at least at home, her impulsiveness seems to have decreased substantially (unless she's tired) and especially since we can be relaxed with schooling I feel like we have some time before we have to make that decision.

 

I also have to say part of me believes, at least for her, there may be some kind of dietary link because she was such a sweet, calm, bright little kid until around 3.5, and the hyperactivity only started in the past year or so, which made me wonder if it might be something dietary inflaming her brain. So I just want to try everything we can to see how far we can take this without meds, heal her gut if it needs to be healed, balance nutrients if they need to be balanced, and reevaluate as we go. 

 

I still haven't been able to find good child-dose, chewable vitamin B, though. Do any of you know whether nutritional yeast can be helpful? It has a ton of B vitamins, as well as other minerals, but actually has so much in it that I'm not sure if it's safe for kids. (I realize it's not gf, but I'm guessing since she's not celiac such a small amount shouldn't impact the gluten elimination we've been trying.)

[Guest]

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Edited June 22, 2016 by Guest

[Crimson Wife]

I would make sure your child does not have any systemic yeast infection before adding yeast as a nutritional supplement.

 

Genova has a stool test to check for yeast infection but it is pricey. We chose to skip the testing and just do an anti-yeast diet, probiotics (administered as a rectal suppository so it bypassed the stomach) and a course of Nystatin. It did not help any with the hyperactivity but it did cause a dramatic improvement in potty training.

[nature girl]

Crimson Wife, would a doctor prescribe Nystatin without signs of yeast infection or UTI?

[PeterPan]

Another approach to yeast would be food combining, because it improves gut clearance.  

 

Anti-fungals increase risk of cancer of the long-haul, so you don't want to take them unnecessarily.  Diet change, better gut clearance, and mild things like garlic or cranberry juice can push it pretty well.  Fwiw, I had serious candida, MCS (mutiple chemical sensitivities), leaky gut, etc., and that's all I ever did.  I used a nutritionist to do it, and we got everything to reverse.

 

She worked with someone I know and got their dc's behavior tamer and more focused with food, but the diet changes it required are NOT things most people would be willing to do.  Lots of whole foods (wild rice, quinoia, etc.), 3-5 cups of fruit and 3-5 cups of veges daily, no processed grains.  The child finally rebelled, the parents stopped, and the child reverted.  Since most people aren't willing to make those kinds of changes, I didn't consider it worth mentioning.  And since my own dd eats that way and STILL is clearly ADHD, I can say pretty certainly some things just are what they are.

[Crimson Wife]

Crimson Wife, would a doctor prescribe Nystatin without signs of yeast infection or UTI?

 

Our integrative dr did because he says it has a good safety profile. He recommends all his patients who take methyl B12 shots treat for yeast because mB12 can exacerbate yeast. My little one was on mB12 for a while, though we did have to discontinue them in late 2013 after our insurance changed and they were no longer covered.

 

But a general pediatrician might be reluctant to prescribe Nystatin.

 

(And in case anyone is wondering like my DH did, the mB12 shots have nothing to do with the deterioration of my little one's hearing because that turned out to be due to a rare genetic mutation).

[Soror]

Fwiw Pycnogenol seemed to really help ds and the research is positive in terms of its safety and effectiveness. Diet made a substantial difference, we went gf/cf/sf Feingold all at once(when he was 4) out of desperation and that was a night and day difference in behavior, although I think that was largely due to gluten intolerance due to Celiac's disease. These days his diet is gluten free, generally light on dairy and generally natural homemade foods.

[nature girl]

Fwiw Pycnogenol seemed to really help ds and the research is positive in terms of its safety and effectiveness. Diet made a substantial difference, we went gf/cf/sf Feingold all at once(when he was 4) out of desperation and that was a night and day difference in behavior, although I think that was largely due to gluten intolerance due to Celiac's disease. These days his diet is gluten free, generally light on dairy and generally natural homemade foods.

 

Interesting...So you don't think eliminating sals had any effect? That would be the hardest for us, Anna's a huge fruit and veggie eater and seriously 75% of her diet would be eliminated. I've been tempted to try it just to see, especially after reading some of these stories: http://fedup.com.au/images/stories/SCADHD.pdf

 

(But it's farmer's market season, so it's not going to happen for awhile...)

[Soror]

It seemed when ds was younger he was sensitive to salicylates (especially strawberries) but as he has got older the effect seemed to be less and less, actually as of late his behavior isn't really an issue too much, unless he is sick and I don't know if he would still receive the diagnosis now but when he was younger the difference was substantial.

[gardenmom5]

I take my son to a naturopath who specializes in special needs kids, so most of what we've done has been with her guidance and the results have been amazing.

 

has she been tested for mthfr mutation? it's pretty common.  there is a link to adhd and similar disorders.  mthf is folate and  those with the disorder can have more difficulty using it causing a variety of issues.  you can buy it OTC, and it is harmless if you don't need it.  folate is used or excreted.  it doesn't build up in the body.  I buy it on amazon (convenience) by THORNE comes in 1mg or 5mg.   my son takes the rx because he needs 15 mg.  if you want to try it, start slowly.

 

as far as vitamins - I'm just going to say - brands matter.  forms matter. please please please make sure the forms you are giving your child are very bioavailable.  many on the market are not - but people think a vitamin is a vitamin. 

e.g. the most bioavailable form of b12 is methylcobalamin.  the most bioavailable of b6 - is P5P.

 

 

rainbow light is a good brand for children, and they make chewables and gummies.  they were the only ones I could get my son to take, before he decided he'd rather swallow one.  capsules of higher quality vitamins (we use emerald laboratories b-healthy.) can also be opened and sprinkled on food or in a drink.

 

eta: my son didn't react to dyes, etc. - but he sure as heck reacted to nitrates and nitrates which are in some of his favorite foods.  e. g. bacon. . . . . he's older, and I've been able to reintroduce them in limited amounts without any problems. (but he's also on 15mg of mthf, and that has been a miracle. - and douglas labs  ashwanghanda for anxiety. . . . . and melatonin for sleeping . . . )

[nature girl]

Thanks, garden mom! Hmm...I've been giving her this brand, which is made from whole foods, didn't even look at bioavailability and it looks like it does indeed have cyanocobalmin. The B6 is pyridoxine HCl...

 

I wish we had a naturopath within driving distance...None of our doctors have been willing to order the blood tests I've asked for, not even ferritin. :/ So I'm kind of running blind here...I just looked up Rainbow Light, and it seems like it also contains cyanocobalmin and pyridoxine? The Emerald Labs B complex looks good except I'm a little worried about the B6 concentration, since B6 can accumulate and this is 2500% over the adult RDA. I'm reading that toxic effects have only been found over 200mg, but that's in adults...Ugh, I wish I had a doctor or dietician who'd be willing to help us with this side of things...

[gardenmom5]

Thanks, garden mom! Hmm...I've been giving her this brand, which is made from whole foods, didn't even look at bioavailability and it looks like it does indeed have cyanocobalmin. The B6 is pyridoxine HCl...

 

I wish we had a naturopath within driving distance...None of our doctors have been willing to order the blood tests I've asked for, not even ferritin. :/ So I'm kind of running blind here...I just looked up Rainbow Light, and it seems like it also contains cyanocobalmin and pyridoxine? The Emerald Labs B complex looks good except I'm a little worried about the B6 concentration, since B6 can accumulate and this is 2500% over the adult RDA. I'm reading that toxic effects have only been found over 200mg, but that's in adults...Ugh, I wish I had a doctor or dietician who'd be willing to help us with this side of things...

 

we did rainbow light gummy bear essentials at the beginning of all of this. it was better than nothing. (really, we saw the improvement in his behavior when he was taking them. or rather, not taking them.)  for years, I used to take naturemade stress -b-complex. it helped, but it was noticeable only if I *wasn't* taking it - again, better than nothing.  when I started the emerald labs (I wanted more bioavailability)  - after 10 days, I felt like someone turned on the light. I'm open to there being something better out there, but feel no pressure to look.  (EL -b-H also contains 400mcg of mthf. - which we also take as a separate supplement at a much higher dose. which reminds me, I'm planning on bumping my dose up again so I need to order 5mg capsules for myself.) dudeling also takes 1mg of sublingual methylcobalamin (b12) because we aren't doing the b12 injections (which are about every three days.) as rx by his ND.

 

I give dudeling 2 capsules of the emerald laboratories b-healthy (1 daily dose is 2 capsules), and have since he was seven when I started them.  His ND is happy with it (we go over his supplements every three months) - even at those doses. if you were more comfortable - you could take one capsule, open it up and dump half of it on her food one day, the other half the next day. that would be 25% of the label listed dose.

 

I take 2,000IUs - 4,000 IUs of vitamin d3, and after five years, still only have a blood level of 45. (I really should switch to drops)   my dd's was 10 - and her provider started freaking out.  she does drops as they are the most absorbable. ability to absorb a given nutrient varies.  

 

I've also learned to take the USRDA with a grain of salt.  for example:

the USRDA for d3 of 400IUs was set in the 60s when it was thought it only affected bones and teeth. (re: rickets - which is a d3 blood level of <7)  It is now referred to as a hormone as it is known to be essential in many bodily functions.  (including mood stability.) this came up in one of dd's (pharmD)classes.  I'm starting to see it referred to as a hormone in current literature. in recent years, a minimum blood level of 30 was considered a baseline. now that baseline has moved up to 50.  one oncologist said she never had a patient with a d3 blood level of >30.

[Crimson Wife]

 

as far as vitamins - I'm just going to say - brands matter.  forms matter. please please please make sure the forms you are giving your child are very bioavailable.  many on the market are not - but people think a vitamin is a vitamin. 

e.g. the most bioavailable form of b12 is methylcobalamin.  the most bioavailable of b6 - is P5P.

 

And the most bioavailable method of supplementation may not be oral. For methyl B12, injections are best (requires a prescription), and then nasal spray (available OTC).

[Crimson Wife]

  None of our doctors have been willing to order the blood tests I've asked for, not even ferritin. :/ So I'm kind of running blind here..

 

If you have the budget, you can order the tests yourself through DirectLabs: https://www.directlabs.com/Default.aspx?&catid=80&language=en-US&tabid=55

 

We had a whole bunch of tests done when my DD received her autism diagnosis. I basically took the list from Dr. Kenneth Bock's Healing the New Childhood Epidemics to our pedatrician. She ran most but not all of them. Almost everything came back normal, however. The blood carnitine level was low, and supplementing with acetyl-l-carnitine really helped.

 

There was something in the cholesterol panel that was off, but nobody had an explanation for its clinical significance. Not even the integrative dr. knew what it meant. It was one of those, "Huh, that's weird" things. 

[drjuliadc]

Diet is more important than supplements, but I think the gluten free, dairy free, chemical free is a great way to go.  I would try to reduce sugar as much as possible too.   Even if a person is not getting symptomatic from chemicals, it is less burdensome to their system to have less.

 

Kids with ASD/ADHD/ADD really have too many biochemical things going wrong with them that diet alone won’t relieve most symptoms, but it is still the first thing to address.

 

The first thing I recommend for ADHD supplement wise is magnesium.  Rarely are people low in calcium and taking it makes them more deficient in magnesium.  People usually don’t take enough mag or the right kind.

 

Next would be a source of omega 3 fats.  I prefer cod liver oil because of the natural vitamin A and D in it.  If you don’t see “molecularly distilled†or “tested to be free of heavy metals,†on the label, there WILL be heavy metals in that fish oil.  You can’t get good fish oil (or any other supplement) from a drug store or Target, or Walmart or Sam’s club.  I like Nordic Naturals brand cod liver oil.

 

I have very good results with tyrosine.  It is a precursor to dopamine, the major neurotransmitter that stimulant drugs raise.  I usually use it in the form of Neurolink by Designs for Health because it also has 5-htp which is a precursor of serotonin and melatonin, which helps sleep and depression.  It is a pill, so that is a hurdle if a child can’t swallow pills.  The dosage can be high too.  It can be a lot of pills to take.

 

Next, I like Brain Vitale, by Designs for Health.  It is a source of a variety of different types of choline to make the major neurotransmitter, Acetylcholine with the addition of phosphatidyl serine.  It is on the pricey side, but one per day is adequate. This really seems to change the motivation to learn in people.

 

I did not know that Calm Child existed by Planetary Formulas, but the ingredients are good and I like that brand.  I would not hesitate to give that every day to a child.  The ingredients are herbs that raise the major neurotransmitter, GABA, which is calming.  It would help with sleep and anxiety.  I would supplement with magnesium first, 5-htp second, then something to raise GABA in a child with anxiety.  It is not uncommon to be low in all three.  Neurolink actually has GABA in it, but GABA is a large molecule that does not cross the blood brain barrier unless a child has a leaky one, which unfortunately is common.  The less gluten and dairy a child has, the less likely their BBB is to be leaky though.

 

Many children have recovered completely from Autism and ADHD/ADD from supplements.  When the cause is heavy metals and they use supplements to chelate those heavy metals there are thousands of recovered kids.  They are not the supplements I have listed above in this post because chelation can be slow, the above supplements help right now.  Please see the autism-mercury yahoo group.  The “love letters†section is the one with recovered and recovering kids and some adults.

 

Some chelation uses DMSA (over the counter) and DMPS (prescription) which are drugs, but some people who chelate just use lipoic acid, which is a supplement.

 

Unfortunately chelation helps only about 75% of kids whose parents have tried it. So some parents do everything “right,†or at least just like the parents of recovered kids, and they see no change in their kids.

 

Prescription drugs are at least 100,000 times more dangerous than supplements.  More than 100,000 people die from properly prescribed prescription drugs each year and no one dies from supplements.  The number is zero year after year.  There were some deaths from supplements when ephedra was legal, but that was always in a person who was also on a prescription drug in addition to the ephedra.

 

It is still accurate that people don’t do well on some supplements and there are obvious improvements on drugs.  I wouldn’t have children at all if it weren’t for drugs.  I had to do IVF, although I tried real hard to have them without.

 

I have no judgement of parents who have to use stimulants because of their obvious symptomatic improvements.  I do have judgement on an industry that doesn’t look for “cause†because it isn’t profitable, (and worse, is causing much of the problem by injecting mercury and aluminum into pregnant mothers and infants/children).  Stimulants are the only thing many doctors know about because that industry is so powerful that it controls them for profit and aggressively suppresses information on natural alternatives.

 

All medical practitioners should know about natural ways to raise the four major neurotransmitters naturally:

Dopamine is raised by Tyrosine

Serotonin is raised by 5-htp

Acetylcholine is raised by phosphatidyl choline, glycerophosphylcholine

Gaba is raised by Gaba or even better, calming herbs like lemon balm, Melissa, chamomile, L-threonine.

….. but not one in 100,000 knows.  If they did, parents would be less likely to have to resort to stimulants and other drugs.

[Orthodox6]

 

 

Many children have recovered completely from Autism and ADHD/ADD from supplements. 

 

 

 

 

Sigh. . . .

[PeterPan]

Sigh. . . .

I know, I got so (removing more unkind words) over that, I just had to give up and move on.

[Crimson Wife]

FWIW, our integrative doctor does NOT feel that chelation has a good benefit/potential risk profile. He does not perform it and warns his patients against it. Everyone will have to make up their own minds, but I'll personally take the word of a professor at U.C. San Francisco over the word of some random poster on the internet.

[Targhee]

my suggestion is that if supplementation caused someone to "overcome" ADHD then they weren't truly dealing with ADHD. We are talking about measurable differences in the tissue of certain areas of the brains, as well as other physical differences in the brain, and brain wiring.

 

I will concede that some symptoms like hyperactivity and inattentiveness can be helped with diet and supplementation (or medication, or behavioral interventions and therapies) but the individual with ADHD will always have ADHD.

 

We, with a small sample size of 3, have had improvements in some symptoms with medication and some symptoms with diet change and supplements, but my kids still have ADHD - they still have impulse control issues, they still are behind with social thinking, they still are "quick start" types who get bogged down if you try to front load with excessive directions/instructions, they're still "Ready, Fire, Aim!" when it comes to planning, they still have sensory issues, they still lose their pencils (daily)... They still are quick and tenacious, they still forgive and forget like no one else, they still are innovators, they still have "Ferrari brains with bicycle breaks." They still have ADHD.

 

So yes! Do try diet modifications, supplements, therapies, medication, excercise, and all the rest. But never make it your goal to "cure" your child of who they are! Help them to get on in a world full of people who don't think like they do.

[PeterPan]

FWIW, our integrative doctor does NOT feel that chelation has a good benefit/potential risk profile. He does not perform it and warns his patients against it. Everyone will have to make up their own minds, but I'll personally take the word of a professor at U.C. San Francisco over the word of some random poster on the internet.

I'm not random and I'll tell you chelation made me MUCH more sick than I was before.  I did IV chelation with an enviro doc for mcs, etc. etc.  It's utterly not necessary except for limited, immediate exposure to toxin situations.  For my purpose, for mcs, for ASD, it could be done with food and done safely, without harming the child.  I got SO sick that I don't even want to go into it. I was left housebound, unable to go out and do things in my 20s.    I was deficient in every mineral, despite taking supplements.  In reality I wasn't digesting well, meaning my body couldn't USE any of the supplements.  It took YEARS and $$$ to dig out of that mess using a nutritionist who would handle me with kid gloves and not do anything aggressive.

 

Oh, and if you think organic, clean living, vaccines, no toxic cleaners, low formaldehyde, and lots of good fruits and veges while you're prego will prevent ASD, scratch that one too.

 

I don't know what the 12 subtypes of ASD are the researchers are finding, but since some of them are clearly genetic, I think it's absolutely, positively PREPOSTEROUS to say we just make ASD go away.  You're not changing the genes, therefore it isn't gone.  But I also take exception to this whole "we're broken and totally messed up" thought process also.  

 

I used to buy into the line I was told, that vaccines cause ASD, that skipping vaccines would ensure your dc didn't get ASD.  I couldn't finally get honest about my own dc's situation until I met someone else who had not vaccinated who had a dc with ASD.

 

I'm just saying there's so much crap and nonsense out there on the web.

 

Adding: Fwiw, I think that's why my ds is so confusing to diagnose, because he has the genes, has the presentation, but also has everything good that CAN be done with food, environment, low toxins, etc.  And yet STILL people who spend time with him see it.  You're not REALLY making it go away, no matter what you do.  If people are saying that online, all I can say is our definitions of away differ.  If somebody redefines it as tolerable, able to function, requiring minimal/no support, etc. etc., fine, I'm happy for their progress.  But you're not changing GENES.  

 

Sorry, I'm on a total rant here.  Told you I needed to be careful, lol.  We clearly don't have in our house the subtypes that are exclusively environmental or exclusively a response to exposures.  I'm not sure what the subtype research is saying.  I *tend* do think (my own brain, no research) that even the people who were pushed over by environmental assaults actually had a genetic predisposition.  But I don't know what the research is showing.  I'm just saying if you have genetics and push it over with enviro, you might improve the enviro but you're not changing the genes.

[Guest]

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Edited June 22, 2016 by Guest

[drjuliadc]

Wow.  I actually had no idea that my post would be offensive, and certainly not massively offensive.  It seems especially so to some of the moms I’m most impressed with here.  OK maybe some of you are dads and I don’t know it.

 

I feel really bad and sorry to offend anyone.  I am a very good mother to my two neurotypical kids, but I think I’d fold like a cheap suit if I had to put up with even half of what you all have to deal with.  Even being pregnant with twins has made me pretty marginal in the mothering category.

 

I guess saying “chelation†is about like saying “Dyslexia remediation†or “OG program†without going into the massive subtle nuances some of you have tirelessly teased out of them and have generously shared here.  And I didn’t realize how emotionally charged the word “chelation†would be either.

 

Some comments on chelation:  There are far more damaging protocols out there than helpful ones, sadly.  I was talking about supplements and I wouldn’t put IV chelation in the category of supplements.    I think IV chelation is massively damaging and a bad idea in ALL cases for mercury toxicity, which is usually done with DMPS and sometimes EDTA.  For hardening of the arteries or heart disease, for which chelation means IV EDTA, I think it can be very helpful.

 

It is pretty hard to give an IV to an autistic kid so IV chelation isn’t a very common method of detox for them.  Oral chelation, while there are still plenty of damaging protocols out there, is far more common.  Even with all the damaging protocols out there, the Autism Research Institute parent survey, which had 65,000 respondents at the last time I looked at it, which was admittedly probably 10 years ago, listed chelation as having a aprox. 75% positive response by parents.  The second most successful intervention was gluten free/dairy free diet at approx. 50%.  Anti-candida diet was less and all drugs were 30% or less.  This was a survey of biomedical and biochemical interventions , not educational, OT or PT type interventions.

 

Only about 1% of those respondents had tried chelation, 600 or so, but I put a lot of stock in mom’s opinions about their children.   They aren’t trying to sell anyone anything.  They are telling their story and trying to ferret out what works, like the moms here and like me.

 

I was very fortunate early on when I had chronic fatigue to hear a pediatrician (Sydney Baker, M.D.) say, “When an adult gets autism, it is chronic fatigue syndrome.† I don’t think that is technically accurate, but it sent me looking in that direction.  My M.O. is to find something that works and work backwards from there.  I knew I had a mercury problem and I found a group of mostly moms in the biomedical community who had successfully recovered their autistic children by removing mercury.  I also simultaneously found Andy Cutler, PhD who I think has a very safe protocol for mercury detox.  I found him mostly because I was lucky enough to be warned away from IV chelation and he had a convincing rationale for why it was bad and how to avoid other bad oral chelation protocols.

Even better, I found a message board with dedicated, determined parents, like many of you, who used his protocol and improved

 

 https://groups.yahoo.com/neo/groups/Autism-Mercury/info

 

The “love letters†section has some of the recovery stories.

 

http://home.earthlink.net/~moriam/LOVE_LETTERS.html

 

When I say “like many of you,†I am not making a casual comparison.  You are some very unique parents in this section of this board who will look for anything, do anything, to find answers for your kids.  It is really very impressive.  You are the reason I am here.  I have some very expensive, extensive training in neurodevelopmental disorders of childhood.  I had never heard of Ball-a-vis x, or neuronet, or minds in motion or Barton.  I read about them here.

 

I used Andy’s protocol and recovered very quickly.  I improved about 50% in 2 weekends of chelation from 4 years of debilitating chronic fatigue.  Even though I knew I had a mercury problem, I didn’t know it was causing ALL of my health problems until they all went away or improved massively with chelation.  I continued to chelate on weekends for about 2 years.  I got about 80% better in that time and stopped because I decided to try to get pregnant.  I have never had a single patient respond as quickly as I did to chelation.  There are a lot of reasons for that, which is another long post.  This makes me a unique proponent of properly done chelation because I know the potential of it firsthand.  Even though people don’t usually respond that quickly, many, many do respond positively.

 

You will never find more valuable information than from someone with the unique personality type of extreme tenacity (me and many of you here) coupled with having had to dig themselves or their children out of a deep hole.

 

It would not be factual to say there AREN’T many autistic children who have recovered from proper chelation and other supplemental support when I have read their mother’s stories, seen videos of them, followed and read EVERY post on the autism-mercury board for at least two years. (It has been a while though, I started chelating in 2002 and 2002-2004 is around the time I read every post).

 

Andy Cutler’s definition of full recovery for autism isn’t a low bar either.  He defines fully recovered as being in a mainstream classroom with no aids, no accommodations, no IEP and being able to have a normal diet, not gluten free, not dairy free.  I would not be fully recovered from chronic fatigue by that definition because I am still gluten and dairy intolerant.

 

As far as genetic influences to autism, there is no such thing as a genetic epidemic, but you better believe there is a genetic component.  The ability to detoxify is VERY genetically influenced.  I have done genetic testing on myself and I have the unfortunate genotype APOE 4/4 which makes me have the worst gene from both my mother and father for detoxifying mercury.  The APOE connection is theoretical, but has a fair amount of scientific support for it.

 

I had a very large exposure to thimerosal from contact lens solution for many years. Thimerosal was wisely removed from contact lens solution in 1990, but I started wearing them in 1980. Vaccines aren’t the only source of it, although I had more vaccines than most adults just because of working in a hospital.  RhoGam was also a large source of thimerosal (not for me) and I think it has been removed from that too.  So sometimes it is an unknown source coupled with a genetic inability to detoxify it.  The source may be known or unknown, but it is ALWAYS coupled with a genetic reduction in ability to detoxify it and other things.

 

What someone else has had success with is not an indictment of what you have been able to or not been able to accomplish with your own children.  75% positive response to chelation is so far beyond the response to any other biomedical intervention that it would be unwise to NOT look into it, but it isn’t 100%.

 

There are thousands of other toxins out there and they aren’t doing us any favors.  It is my belief that mercury is the kingpin toxin of our day.  The other toxins aren’t as neurologically, immunologically and hormonally disruptive in very small quantities (parts per billion) and they aren’t being injected into us at birth (now at fetal age since flu shots are recommended for pregnant women) or installed in our mouths.  The other toxins aren’t helping out a mercury toxin person either, they are piling on.  Maybe the cause IS something entirely different in those 25% non responders

.

There are some people who believe you will never teach a dyslexic to read, just accommodate them with audio, etc...  Just because they couldn’t do it, doesn’t mean you can’t and doesn’t mean you are a bad mother if you can’t either.  But you guys are still here telling people what worked for you and your children.

 

Hopefully my story makes me less “random.† I also graduated Magna Cum Laude from Indiana University School of Medicine with a 5 year undergraduate degree in Medical Technology and graduated as valedictorian from Palmer College of Chiropractic.

[Guest]

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Edited June 22, 2016 by Guest

[PeterPan]

 

It would not be factual to say there AREN’T many autistic children who have recovered from proper chelation and other supplemental support when I have read their mother’s stories, seen videos of them, followed and read EVERY post on the autism-mercury board for at least two years. (It has been a while though, I started chelating in 2002 and 2002-2004 is around the time I read every post).

 

Andy Cutler’s definition of full recovery for autism isn’t a low bar either.  He defines fully recovered as being in a mainstream classroom with no aids, no accommodations, no IEP and being able to have a normal diet, not gluten free, not dairy free.  I would not be fully recovered from chronic fatigue by that definition because I am still gluten and dairy intolerant.

 

 

Since our local ps routinely refuses to give kids with ASD an IEP (I personally know one in a mainstream class with no aids, no accommodation, no IEP, normal diet, not dairy free, not gluten free, still clearly ASD) and since the ps refused to put ASD as my ds' disabling condition, meaning he's in the exact same situation, I go back to my point that our definitions differ.

 

Admittedly, I'm hyper-literal.  Like let's just get over that hump now: I'm LITERAL.  Recovered means poof, gone, like it never happened.  Like that water damage removal service you call in when your house floods.

 

I've been around this rope for a long time.  When I had food allergies (past tense, had) and MCS and CFS and more, I hung with people who wanted to tell everyone else how great the thing was they did because they were all better.  Well I realized, the more I dug in, that their definition of all better was not MY definition.  I'm not denying anyone's PROGRESS.  I'm just saying our definitions differ. 

 

So to me, you're looking at this mathematically, as an outsider.  I'm looking at it cynically, as in insider, going my ds fits those criteria and *I* don't call him cured, poof, gone, not ASD.  His is very subtle, yes, but it's still there, still cropping up in lots of ways.  And a parent on some discussion board would be so USED to that that they would have NO WAY of saying only personality now, not ASD, that this is what he would have been without ASD.  

 

Also, with 12 subtypes of ASD being indicated by the research, there's no way to reduce it to one path (mercury exposure, etc. etc. ). 

 

I studied russian at IU a couple summers btw.   :)

 

 

 

 

[Guest]

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Edited June 22, 2016 by Guest

[drjuliadc]

I refer to moms a lot and since a lot of the usernames have mom, wife, Elizabeth, in them, but some don't, like cricketonthehearth I didn't want to suggest that some people here might not be dads.  I already offended many and I didn't mean to, so I was trying again to be not offensive.  I don't like to offend people or hurt their feelings. If they are identifiable, most of the posters here and autism-mercury group identify themselves as mothers.

 

I didn't think anyone was calling ME a bad mom.  People just seemed so sensitive to what I was saying I thought maybe that was because they thought I was suggesting that they could get more improvements than they were.  I am so humbled by what parents of learning challenged kids have to deal with, if all you did was sit on the couch and eat bonbons, I couldn't blame you.

 

I wouldn't care if someone called me a bad mom anyway.  I have been a chiropractor for 24 years.  When I was in school and first in practice I heard the word Quack a lot.  Ha ha. If I were sensitive to what other people said, I would never have become a chiropractor in the first place.  I tell people publicly and privately that I don't vaccinate my kids.  I'm sure lots of people think I'm a bad mom for that.

 

If you are interested in supplements for ADHD, "love letters" link has mostly, almost all, parents' stories of improvements their kids have had.  If there are "recovered" stories it is in the subjective opinion of the parents, not the kids themselves, so they would be limited by that. The way many parents reported their child's improvements if they started out with an autism diagnosis was that they seemed less autistic and more ADHD as time and improvements went on, then more ADD than ADHD, then indistinguishable from their peers.  It wasn't someone OTHER than the parents deeming them "cured" or "recovered."  Not all of them are stories of that dramatic of an improvement.

 

It was interesting that I heard the story many times, that the kids were easier when they were more "autistic" and when they appeared more ADHD they were more difficult to handle.

 

I have appreciated many of your posts on this board OhElizabeth, CrimsonWife and Cricket.  I would be very interested in what you attribute your improvements in CFS and MCS to, Elizabeth.  IU is a beautiful campus.  I hear Russian is a difficult subject but it doesn't surprise me you could handle it.

 

[nature girl]

FWIW, I appreciated your comments, and want to thank you for trying to help. You touched on hotpoints, citing vaxes as a potential cause and using the word "cure" are always going to upset people in the trenches of all this. It gets to me too when people suggest there might be something I could have done to prevent this, or that there are any easy answers to such complex issues, but I do (obviously, or I wouldn't have started this thread) think there can be potential benefits to alternate approaches. 

 

I don't expect my dd to ever be "cured" of anything, but I (and I think most people here) think there's value in trying every reasonable, non-harmful alternative to meds before taking that plunge. Thanks for sharing your views.

[PeterPan]

Julia, I pretty much hit rock bottom when dd was about 2.  My basal temps were 95.3 armpit.  I had severe adrenal fatigue.  I became sensitive even to sunlight.  I was EMF sensitive (still am) and was living under high tension power lines.  As you can guess from the numbers, it was a convergence of the strain of pregnancy, the EMF exposure (which creates a stress reaction where the body basically poisons itself with carbon monoxide if you believe what you read), the hypoglycemia, my trying to eat to control the hypoglycemia, the candida causing leaky gut and increasing food reactions and MCS, the MCS increasing till I was having anaphylactic reactions to things.  It was just a mess.  

 

I used an enviro doc for a year or two, and he made some things initially better (put me on thyroid meds!) and some things much, much worse.  I left him to use a nutritionist and have not darkened the door of any doctor, save for 20 minutes at Urgent Care for pneumonia, since 2001.  I had my babies without docs and have done nothing with docs.  I've considered occasionally going to a doc, but when you've been as sick as I was (and gotten more sick thanks to docs) you get REALLY cynical.  Or rather, you show me one willing to think as hard as I do, to be as careful with me as he/she needs to be, one who is not ARROGANT, and we'll talk.  

 

For the record, I do take my kids to a ped.

 

Just to capture how sick I was before I started with the nutritionist, I'll toss out to you that I was preparing for various kinds of dessensitization techniques (some of which some people now think cause cancer) and consider desperate therapies like drinking your own urine and eating raw meat.  I was DESPERATE.  

 

So, in one of those strange providences, a post came by on a yahoo group I was on, and this guy said he was using a nutritionist and had made some progress.  I deleted and moved on, because I saw a lot of those things in my day.  But the voice haunted me, and eventually I looked it up and called her.  Turns out she works very close to my mother, so I was able to begin using her and later see her in person when we'd go there on trips.  

 

She uses food, just food.  She uses some supplements, but they all have to be food-based because she's not allowed to prescribe, etc.

 

And that's it, just food.  No anti-fungals, no meds, no chemical chelators, nothing.  And my body dumped toxins and my body slowly healed.  And as long as I take care of myself and do what I should (eat my food), I am stable off thyroid meds, can do astonishing things (take trips, work conventions, clean my house), have no food allergies, no longer have adverse hyper-sensitive reactions to chemicals, and generally live a pretty good life.  I take full responsibility for my health and that my actions have CONSEQUENCES.  If I want to eat like the devil, I know full and well my body will go back to being sick.

 

But my version of eating well?  Not restricted.  I food combine and make sure I eat enough fruits and veges.  That's it.  I don't have to skip foods (though I skip red meat for the most part as it's hard to digest and slows down my gut).  I don't have to skip wheat, though I don't eat it very often (maybe once a week, once every other week).  The point is I CAN.  I'm not avoiding things, I'm not claiming to be well by avoidance and all the other crap.  

 

I don't consider myself quite where I want to be.  That's a long story.  I'm about 70% of where I'd like to be, and my goal would be more like 80%.  Her goal is 90% for people.  But I got there all with food, just putting food in.  And putting good food in doesn't increase my risk of cancer and organ damage like anti-fungals.  Sure those chemicals work faster, but my liver was SO sick and I was so susceptible.  I almost never take anything stronger than 2 aspirin.  Your liver is involved in conversion (thyroid, T4 to T3), so the more I take care of my liver by eating organically, limiting exposures, etc. the more stable my thyroid is.  If I get exposed to things and my system gets stressed, I still go cold. 

 

I've referred a lot of people to her, but the only types of people who stick with it are the very sick people who have already gone through the other options and know there's nothing left.  And it's the great irony, to me that a simple whole, healing solution was there all along for anyone.  But honestly we want our answers in a bottle, we want them fast and as a pill.  It's really hard to acknowledge that we CHOOSE health every day when we make the choice to eat what our bodies need or make the choice not to.  Lots of people admire that but can't actually make themselves DO it.

 

Yes, IU is very beautiful.  If you want to be horrified, I used to run on the campus at night.  That's what dumb and ignorant does for you, lol. Russian isn't so bad.  Hungarian, now that would be hard.  (Is that the one with the 17 cases?)  German is harder.  The IU program had us learn russian linguistics, and it was one of those things where things work together for good.  Later I took more linguistics classes (in IPA, field methods, etc.) and those gave me the background to understand ds' speech therapy easily.  Go figure.  I was just chatting with his SLP about his /sh/ sound, saying it sounded hard to me and how we had a couple kinds in russian (hard and soft) and she was explaining to me what his tongue was doing, what his lips were doing, and what she wanted.  It all comes together.   :)

 

 

 

[PeterPan]

FWIW, I appreciated your comments, and want to thank you for trying to help. You touched on hotpoints, citing vaxes as a potential cause and using the word "cure" are always going to upset people in the trenches of all this. It gets to me too when people suggest there might be something I could have done to prevent this, or that there are any easy answers to such complex issues, but I do (obviously, or I wouldn't have started this thread) think there can be potential benefits to alternate approaches. 

 

I don't expect my dd to ever be "cured" of anything, but I (and I think most people here) think there's value in trying every reasonable, non-harmful alternative to meds before taking that plunge. Thanks for sharing your views.

Anna, just so you know, I'm really in the weeds with my quibbles here.  Like if Julia and I both agree our kids need supplements (mine get them), need lots of fruits and veges (mine get them), need care on candida (mine get it with primadophilus, garlic, food combining, and occasional food chelators like cilantro or pomegranate juice), agree that white flour feeds all things bad (I'm guessing she's there, lol), agree vaxes and chemical exposures push kids over who are biologically susceptible (true), think GMO/glycophosphate exposure is increasing our rise in diagnoses and symptoms, etc. etc., then we're doing the SAME  things.  I have ADHD kids in my house pretty frequently, and they CALM DOWN in my house.  I only quibble over the word *cure*.   :)

 

Ok, I'll go into why the "cure" terminology bugs me.  Let's be real.  I can pick up Stopping ADHD and their "cure" is working on the retained STNR for 8 months.  Now the *irony* about their therapy is they just HAPPEN to be working on impulsivity, etc. etc. while they're at it, so it's not like they're ONLY shifting the STNR.  Anybody can see that in the book.  But even if it was, the point is that's NOT the "cure, cure, cure" for ALL ADHD, because it doesn't even APPLY to my clearly ADHD dd.  I mean seriously.  Why is it that people get latched onto one thing that is true for some of the target population and start waving flags and go CURE, CURE!!  ???  Because it sells.  Because it works for some.  Because saying do STNR exercises for 8 months and it MIGHT reverse 60% of your symptoms IF that was your problem in the first place is NOT quite as hot a selling line as "Do this and you will DEFINITELY BE CURED."  Kwim?  

 

Personally, I think a lot of the "cures" probably apply to somebody, but they can't all, on their own, be the single "cures."  Not unless we redefine cure to mean some really specific subset of symptoms or presentation.  And I go back to my philosophical point that I really don't think it's healthy to approach ADHD and ASD as something needing to be cured.  I think some things are glitched.  I think it's right to interject yourself into a developmental process that got glitched and go hey, let's move this forward.  I think sometimes they're lacking TOOLS, and I think it's good to give them more tools.  When you do EF and cognitive training, neurofeedback, RDI, etc., you're giving them tools, things they can decide to use, more brain pathways, more options.  But you're not actually undoing who they are.  Their brains are STILL the ADHD/ASD brains.  What you're doing is ADDING options, adding pathways.  And I'm cool with adding.  I'm just not cool with saying someone is broken/defective.  I think they are worthwhile, whole, unique, special individuals, whether they ever got those therapies or not.  

 

It's a fine line.  Maybe it dissolves at some point.  Nevertheless, I think it matters.

 

 

[Guest]

Julia, if you look closely at my signature, right under my first initial it says mom ;) I have always been a mouthy one, since I was 16 months, participating in adult conversations, as my mother would tell you. I was a tomboy and a STEM kid growing up, so I could relate to boys more than girls. I have also always felt the weight of responsibility to help and protect others. That's another trait since childhood. I did not pick my forum name by chance ;)

 

Yup, it was early morning here, I had barely had any sleep, and I misread the part about being a good mother. By the way, I was not offended. I get touchy on two subjects. One is the cure part that I addressed before. The other is chelations because you may have read the good stuff but I always look at the other side of the story and have read some horror stories. I told you I feel a strong sense of responsibility about others so I worry about the impact this partial information may have on the moms of newly diagnosed kids. I also read Dr. Bock's book (two years ago I think?) and he does mention chelations in it but I never go near invasive procedures.

 

When we went gfcf we did not have the diagnosis yet. I did it because my husband and I are hypothyroid, mine from Hashimoto's and the likelihood of our boys getting it is high. We saw some pretty significant results within 6 months. Significant to us but I did not start it looking for a cure. I see the genetic connection in my family. The sensory issues and quirky behaviors, right down to the social issues. I can see it in family members. I am also not saying that there is no environmental connection but I see a lot of it coming primarily from food sources, air, water, etc. Dr. Bock talks a good game about vaccines but honestly, if I had a baby tomorrow I would still vaccinate. The benefits far outweigh the risks and vaccines are not what they used to be anyway. But you know, if one starts looking at conspiracy theories these days one will find them everywhere. We can make ourselves sick about everything around us as being poisons or we can do anything in our power to keep our environment as clean as we can and just deal with what life brings us. I almost drove myself sick with worry when we first realized we were dealing with autism, trying to find out about all the different connections. My family needs me sane ;)

[geodob]

Whilst this blatant marketing of 'chelation therapy', using made up figures.

Might seem acceptable?

It should be noted that their are some possible side effects from chelation therapy, that have been scientifically identified?

One side effect, is that it can trigger various types of cancer.

Another possible side effect, are various types of brain damage.

But then, a further more immediate side effect, is death.

 

With long term exposure to some 'toxic element/s'?

These 'elements' become a part of all of our cells.

So that with chelations effect of removing this element from our cells?

Perhaps you can appreciate how the cells need to be reformed to adjust to this change?

Which is where these different 'side effects' can occur.

 

While we have discussions of many different types of therapies, about how helpful they will actually be?

To discuss a therapy with the possible side effects, of cancer, brain damage and death ?

 

Sorry, but it greatly concerns me that a parent reading this thread, might go on to trying chelation therapy?

Where anyone can market themselves as a 'chelation therapist'.

Which in fact requires a medical specialist, in the area of 'toxicity'.

 

Where a medical specialist in the area, would never talk about a 'cure'?

[Guest]

Thank you for jumping in geodob! I so often find your voice to be the voice of reason on here.

 

Sharing some evidence to what geodob just posted. I think it will be useful to have it on here since chelations were mentioned. Seeing both sides is always useful, if not critical.

 

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1592402/

 

http://www.mayoclinic.org/diseases-conditions/autism-spectrum-disorder/expert-answers/autism-treatment/faq-20057933

 

http://www.news-medical.net/health/Chelation-Therapy-Side-Effects.aspx

 

http://www.forbes.com/sites/emilywillingham/2012/11/30/no-evidence-supporting-chelation-as-autism-treatment/

[MerryAtHope]

Things I have found helpful here (for either myself or my kids)...

• Daily exercise (so important--some kids can't function for school without exercise first)
• A good night's sleep
• Time in nature/"green time" (my oldest actually realized this on his own and used to assign a break to go outside, even if he only laid in the grass and enjoyed the color

The first five things from this article are also helpful for us:

 

10 natural helps for ADHD 

 

1, protein at every meal (I find that even if I just do a handful of walnuts and a bit of yogurt in a fruit smoothie that I feel better than just having the fruit smoothie or just having a healthy cereal)

2, Balanced meals:  Â½ plate fruit and veg, ¼ protein, ¼ carbohydrate with fiber (not as consistent with this as I'd like!)

3, multi-vitamin & mineral 

4, B Vitamins—improves IQ by 16 points for those low in B (the article mentions a brand used in studies--I agree type and bioavailability matters)

5, Zinc, Iron, Magnesium.  84% of kids w/ADHD have low iron.  Zinc-inattention.  Magnesium-calming. I notice a physical difference in how I feel if I'm not on iron and zinc. Do be careful with iron & monitor levels with a dr.

 

Items 6-10 haven't worked out well for us.

6, Omega 3’s (I think they suggested Omegabrite, Zone Labs, Nordic Naturals--we've tried those and several other brands and have never found one that agreed with us. We seem to be fine with fish though, and try to eat fish occasionally. Walnuts and some other foods have some, though not always in the "optimal ratios.")

7, Picamilon. No effect here.

8, Ginkgo & Ginseng --negative reaction/allergy?

9, Pycnogenol--didn't feel good

10, Rodiola Rosea--Racing heart, heightened feelings of anger

 

Obviously, we have issues that others don't, and some will find these helpful! 

 

Meds really help one of mine. Wish I would have tried sooner. OTOH, I'm not well-read on using meds for young children, but it's definitely worth a conversation with the dr. 

 

Having good results here with using cell salts, specifically Kali phos for taking the edge off of anger/frustration/anxiety/nerve-related symptoms. Haven't used them long enough to know if we'll see any long-term changes, but really like the day to day differences we've had so far. 

 

 

 

 

 

You know how they say that ADHD doesn't exist in certain cultures? I've always supposed that it has more to do with the definition and diagnosis (this is true in France, I believe) but now I'm thinking about how kids drink coffee and tea in many cultures, and maybe that mellows some of them out too.

 

I read a debunking article on the France myth of "no ADHD" a few months ago! Interesting thought about coffee/tea!

 

[PeterPan]

Did we talk neurofeedback here yet?  I forget.  My dd has done 8 or 10 sessions of Zengar neurofeedback, and my ds is getting ready to start.  My dd has ADHD-inattentive and has struggled to do basic things like work on a project in chunks, transition back to work on Monday after being off on Sunday, etc.  The effect, to her, is like what she assumed ritalin would feel like.  She's also rising better, more clear.  Ds is the opposite neurology, very ON, very impulsive, so I'm interested to see what happens with him.  He's so impulsive, he's almost impossible to work with and reign in.  We'll see.

 

I'm saying when you have gone through all the nutritional stuff, done the OT and midline stuff, still have issues, and don't want meds, neurofeedback is one of the few things left.  Caffeine works, but it left dd jittery even though she was more focused.  She couldn't find a dose that didn't have the adverse effects when it was enough to help her focusing.  

 

Btw, Stopping ADHD claims it's all from a retained STNR, but ironically dd's isn't retained, go figure.  Ds' is, but I don't think working on it is going to radically remove EVERYTHING, lol.  It will just help the symptoms that were caused by the STNR, duh.  But it's still a good reason to check for retained reflexes on kids.

[Tiramisu]

No retained STNR here either.

[LLMom]

I didn't have time to read all of the replies, but if she doesn't have a dairy allergy you could try homemade kefir for probiotics.  It is one of the best ways to get them, and it is amazing at improving gut health/mood. 

[nature girl]

Thanks, Merry! We're doing much of that now, although not the herbals you listed. I think it might all be making some difference? At least she seems less hyper and impulsive, except at night when she gets tired. I may try the herbals some day as well, but at the moment she's taking so many pills (add probiotics, calcium and digestive enzymes to your list) that I'm kind of scared of adding much else, especially when most of the evidence seems anecdotal.

 

OhE, neurofeedback is on my radar, but the only "local" practitioner is over an hour away, and I'm sure it wouldn't be covered by insurance. If I knew it would work, or worked for most people, then I'd find the way to save the thousands of dollars, but it scares me to take such an expensive chance. :( I don't think she has any retained reflexes, at least not the reflexes I've checked, but I guess we'll find out more during our OT eval.

 

I did find out just yesterday that Anna's birth father and much of his family (including his mother and his son) all have ADHD, so bingo. In my thinking, that doesn't necessarily mean there might not be intolerances behind it (which is one of the issues I've been trying to work through with Anna) or that the supplements won't help. But it does add another piece to the puzzle, and cement for us that that's what's going on.

 

I didn't have time to read all of the replies, but if she doesn't have a dairy allergy you could try homemade kefir for probiotics.  It is one of the best ways to get them, and it is amazing at improving gut health/mood. 

 

Thanks! We're dairy-free these days, I've noticed her getting more hyper with dairy, but maybe I could try making coconut kefir? I do give her probiotics and she eats kimchi daily, which is also good for the gut.