Changes since last update [December 2004]

B50: Except for the higher doses noted below, I don't have to give higher doses than those doses in B50 for my kids. In fact, #2 needs half a B50 and #3 needs about a quarter B50, otherwise they are too hyper.

B6: After a few months, high doses of B6 caused hyper again, so I reduced down to 25 mg [half a B50] for #2 and a quarter B50 for #3. B12: I started the B12/folic acid again. High doses of B12 cause head banging and excessive crying for #3, but giving it with folic acid eliminates that problem. However, it does cause scripting, which I discovered does not occur when I add TMG. I worked up to 2000mcg B12, 1600mcg folic acid, and 500mg TMG for #2, and the same for #3 except only 1500mcg B12. More language and no scripting!

After a few weeks, those doses were too high. I noticed hyper for #3. And for #2, I noticed hyper, and the beginnings of inappropriate sexual exploration with his siblings. I dropped the B12 down to 1000mcg [and folic acid down to 800mcg and TMG down to 250mcg] for #2 and 500mcg for #3. Interestingly, this also caused an INCREASE in language and social interactions.

Too much TMG caused #2 to swish saliva around in his mouth and spit the bubbles out onto his arm. He also did this with too much oral glutathione, and too much daily ALA. I learned that TMG and ALA both help with the production of glutathione, so it appears that I need to reduce the amount of these supplements. I dropped the glutathione, and kept the daily ALA and TMG, because #2 will regress slightly without them.

Oral B12 does tend to increase yeast for my son, so I do give it with GSE.

EFAs: My #3 has "chicken skin" bumps on his arms. It has reduced considerably with added B vitamins, vitamin A, anti-virals, and yeast control, but there is still a small amount. I tried EFAs, because EFA deficiency is commonly a cause of this condition, but #3 lost language and started chewing on things, and #2 developed ear wax, became aggressive, lost language, and started his visual stims again. This happened with both fish oil and flax oil.

On one message board, it was posted that some kids need riboflavin and carnitine to tolerate EFAs. I added carnitine [already giving riboflavin in B50] and #2 was no longer aggressive, but he still lost language and his visuals returned.

On another message board, it was recommended that I "preload" with evening primrose oil [EPO], because some kids need that before fish oil or flax oil. So I started that at very low dose [because of major constipation issues with this supplement], and I kept the carnitine and also added a blend of amino acids. For #3, the skin condition was much better within 2-3 hours of giving the EPO. For #2, he had a small regression of lost language skills and an increased tendency towards visuals, but it only lasted a few hours, rather than the prolonged regression I saw with flax and fish oil.

I read on one of my linked sites that EFA conversion requires zinc, magnesium, pyroxidine (vitamin B6), niacin (vitamin B3), ascorbic acid (vitamin C), and vitamin E. EPO causes major constipation for my kids, and this may be because it uses magnesium for conversion. From this list, I am already giving most of these supplements, but I added at low dose the ones I am not currently giving.

#3 still had a slight case of "chicken skin", and #2 still had a few language issues. Someone on a message board posted the "mito cocktail" for kids with mitochondrial issues. The person also mentioned that fats are metabolized in the mitochondria of cells. Because #2 still has problems with EFAs, I decided to add CoQ10, the only ingredient of the mito cocktail that I was not already giving. This helped a LOT. First, I no longer needed the huge amount of magnesium that I had been giving to keep the constipation away, altho I still do need to give a smaller dose. Next, both #2 and #3 had a noticeable increase in language.

So I decided to add back the flax oil, to see if they tolerated it now. I only added 2 drops at first, because I was hesitant about the aggression it had caused previously. No problems, so I increased to one tablespoon. No problems, and lots of increased language. [Problems started again after a few weeks, see June 2005 Update below.]

Vitamin A: I can no longer give vitamin A, except as beta carotene, because even at very low doses, #2 will develop the toxicity rash. He now converts beta carotene to vitamin A, once I added back a low dose of selenium.

Current supplements:

B50 [partial dose], extra biotin
Cal/mag, extra mag [for biotin and EFAs]
B12/folic acid/TMG
ALA and Selenium [very low dose]

EPO, flax oil
Mito Cocktail as follows [I use lower doses of most of these, no more than USRDA]:
CoQ10
Carnitine
Vitamin E
B50 [my lower doses above]
Vitamin C
Zinc
Selenium

Here is a description of one morning a few days after I had added the mito cocktail and re-added flax oil:

My #2 and #3 are watching Thomas and the Magic Railroad right now. They have an elaborate track set up, there are trains on it, cars on the carpet [roads], and a boat on a sleeping bag [water]. There are SweetStreets houses set up, people are picnicking by the tracks. Occasionally I hear "mommy, come look at this" and I have had to stop writing this message for a minute to go and look.

Now except for the fact their language and behaviors [they can have trouble sharing LOL] are like 2-3yo kids with articulation problems, and they are 7 and 9, this looks and sounds just like normal kids playing. I have to remind myself, which I do occasionally, that #2 is a KANNER child.

Update, April 2005

My son is fully chelated with ALA, and he has completed anti-virals [high dose vitamin A protocol and olive leaf extract]. He tolerates all foods. However, he still has problems with certain supplements, and he still has a large problem with receptive and expressive language acquisition and usage. Therefore, recently I have been trying to figure out why he has problems with certain supplements, because maybe that will give me an insight into why he still has language issues.

I tried probiotics again, and now he tolerates them!

He did not tolerate EFAs, but I had already discovered why [see update above, March 2005].

He still does not tolerate vitamin E, and it is not because most vitamin E is soy-based, because he tolerates soy just fine. He also does not tolerate anything containing iron. When I give minerals with iron, he will regress, but minerals without iron seem fine. A while back someone had posted about certain children who are autistic because of iron-toxicity. I did some research and learned that soy will inhibit iron absorption. Also, risk of vitamin E deficiency occurs in persons who cannot absorb or metabolize fats [see update above, March 2005]. Therefore, my son is at risk for vitamin E deficiency, but giving him vitamin E causes problems, which led me to believe that perhaps he had problems because it was inhibiting iron absorption and possibly causing an elimination of high iron levels.

http://ods.od.nih.gov/factsheets/iron.asp

http://ods.od.nih.gov/factsheets/vitamine.asp

IP-6 is known to inhibit iron absorption and is commonly recommended for autistic kids who are high in iron.

I gave my #2 and #3 one capsule each of the Cell Forte I purchased from my local health food store [contains IP-6 and inositol]. I also added some vitamin E, and minerals without iron [apart from the IP-6]. I noticed for #3 the chicken-skin bumps on his arms reduced again, now they are barely noticeable, altho there are a few whiteheads there, and he has been chewing on things again, which usually means something not tolerated, or yeast. I gave him more probiotics and those issues are gone. His expressive and receptive language is increasing noticeably in just the 4 days that I have given these supplements.

For #2, I noticed a much better attention/focus, noticeably improved receptive language, and slightly more expressive language, altho his visuals came back [arrrrgh], which typically means something not tolerated, or yeast. He was also hyper, climbing on the furniture, bouncing on the couch, and covering his ears, all of which mean yeast for him. I increased his probiotics also, and all those symptoms went away. I hope I can control this with probiotics this time, instead of GSE, altho I am not too hopeful because I am already up to 100 billion cells per dose of IP-6. [Update: I had to give GSE again for yeast.]

So because my kids have yeast issues again, which they have not had in quite a while, but I am seeing a noticeable increase in attention/focus and language just in the past 5 days, I speculate that my kids were iron toxic and the IP-6 and vitamin E that I have added, are causing an elimination of iron.

I usually don't post an update without at least a few weeks experience with a supplement, and this has only been 5 days, but the improvements with IP-6 have been so immediate and noticeable that I thought I would mention it before a few weeks has gone by.

UPDATE #1: Ignore my note about giving minerals. I learned today that my son regresses with a multi-mineral supplement. I removed it and he is doing MUCH better. He is apparently high in more minerals/elements than just iron.

UPDATE #2: [Copied from my post to ABMD on 5/8/05, with a few additions]

I am doing an iron reduction protocol with IP6 for my son. Within a few hours of giving the IP6 the first time I gave it, I noticed a marked increase in language for him. Language delay is his only remaining issue.

I removed all other supplements except IP6 and GSE [because iron elimination, similar to elimination of other metals, increased yeast for my son]. I used only those two supplements for about a week. Wonderful improvements!

Last night, my son started crying in bed at about 10pm. I went in and asked him what was wrong. He said "mommy, owwie eyes". When he cries in the evening and at bedtime, usually it means something good is happening. And this morning, he was wonderfully improved! I am speculating that something about the condition of his eyes, perhaps the underlying cause of his visual stims [which are mostly gone but do show up occasionally] was finally being corrected. At least I am hopeful!

Today I tried adding back one supplement. I chose cal/mag. Right after I added it, my husband took my son and other kids to a train show. They returned three hours later. My son was bending sticks and twirling them in front of his eyes, reciting videos, and was otherwise a bit noncompliant. Wouldn't you know it, I finally get some REAL improvements, and then I go and mess it up LOL. But at least I know more about my son now.

IP6 removes excess calcium as well as iron. It is one of the OTC remedies suggested for kidney stones. I am using it for myself for that issue, and at first I took a full capsule which is 1/4 the adult dose. About an hour later it had caused the beginnings of kidney stones for me. I felt a bit like when I had a major kidney stone two years ago and ended up in the hospital for three days, altho this was just like a "hint" of a kidney stone, in BOTH kidneys. I immediately reduced the dose of IP6 and took LOTS of olive leaf extract to keep away a kidney infection. This produced results within 24 hours.

Just a speculation, but maybe kids with calcium issues are too high in calcium in the first place? I never thought this would be the issue for my son, because he was cf for over 2 years and during that time he did not tolerate ANY calcium [and now I know why] so I never gave him ANY calcium at all for two years. He never started poking at his eyes or doing anything that I know of that would indicate possible calcium deficiency, even tho he was cf and was not supplemented.

If anyone wants to test for iron, the test that I understand is recommended for this is a "total body iron panel".

Not sure what the test for high calcium would be.

Update, June 2005

Current supplements:
Amino acid blend
Extra carnitine, taurine, carnosine, cysteine
Evening primrose oil
Flax oil
Fish oil [just added]
Magnesium
CoQ10
IP6 [and GSE, because iron removal causes yeast]

My son started having problems with EFAs again [see top of this page for the mito cocktail, which my son required to tolerate EFAs]. Someone posted that amino acids helped her child with language, so I bought some amino acids to try. Not only do they help with language, I was able to add back the EFAs again! And when I added cysteine [not present in the blend I am using], the next day my son was like a different child. Much more interactive, much more language, and in fact, he started seeking out his siblings to play with him, instead of not caring if he was alone or playing with another child. He definitely enjoys playing with other children now, more than being by himself.

A few weeks ago I tried to reduce his dose of IP6, but everytime I made a request for him to do something, he was very oppositional, saying "no thanks" to everything and generally being a difficult child. I increased it back again and things are once again going well. He must still have high levels of iron and calcium.

#3 has REALLY taken off with this same protocol, much more quickly than #2. LOTS more language, higher level language, more interaction, he was able to play with his sister and a neighbor boy for almost an hour without the boy becoming frustrated with him.

Update, September 2005

Supplements removed relatively soon after posting the last update:
Amino acid blend
Extra carnitine, carnosine, cysteine
Evening primrose oil
CoQ10
IP6 [and GSE, because iron removal causes yeast]

I noticed my son had started regressing, and experimentation indicated that he no longer required those supplements. I did need to give a multi-mineral supplement for two days to make up for the demineralizing aspect of the IP6, but after two days my son no longer needed it.

Supplements added and removed since the last update:
Vitamin C
Vitamin K

Strangely, these two supplements, especially the Vitamin C, were VERY helpful for both visual stim issues and language issues. But then once he did not need them any more, they caused MORE visuals and LESS language.

Supplements removed in the last few weeks:

Taurine
Flax oil
Magnesium

These started causing regression instead of improvement, so I removed them.

Supplements I still give daily:
NONE!

We went camping over the Labor Day weekend. I am including some pictures at the end of this update. Shortly after we returned home, #2 and #3 started sneezing and having other symptoms of a cold. About 2 days later, instead of cold symptoms, the virus apparently migrated into their brains, because all the old autism symptoms returned [except yeast and food intolerance]. This was VERY depressing. In addition to #3's previous symptoms of language loss, he also started flapping his hands and waving his hands in front of his eyes while wiggling his fingers [visuals], which are two things he NEVER did before!! #3's visuals returned, his language disappeared, and he had no interest in social interactions. Both kids started scripting again. VERY DISCOURAGING!

I gave olive leaf extract and GSE, which seemed to work about 80%. I had been considering adding ViraStop and Candidase enzymes, which I did a few days after I started the OLE/GSE. The combination of the enzymes plus the other two supplements was MUCH more effective than just OLE/GSE alone. But after several days, the GSE seemed to be causing problems [visuals returned] and I guessed it might be bad bacteria. I removed the GSE, kept the other three, and things went well for a few days. But then things regressed again, so this time I removed the OLE and just kept the two enzymes. This worked well.

In the past week I have been experimenting with adding AFP Peptizyde to the ViraStop, and No-Fenol to the Candidase. [Enzymedica enzymes are much more expensive than HNI enzymes.] This combination is working well, and along with each increase has come increased language and social interest, and a reduction of the negative issues. #2 is also much more independent. He is feeding the dog when he notices the dish empty, without being told. He goes out and retrieves the morning newspaper without being asked. And interestingly, #2 is now starting to sneeze and be congested again, so it appears the enzymes are pulling the virus back out of the brain. #3 broke out in major whiteheads and rash all over his arms and face, which is his typical sign of detox.

In addition to having to deal with virus issues again, and not knowing why the cold virus migrated into their brains, it is discouraging because my kids were supplement-free for a week! But I guess the end is in sight, even tho I thought the end was here several months ago.

As an interesting side note, when we were camping over Labor Day weekend, I took all my kids into the women's restroom with me to shower [this camp has showers]. I was helping my #2 son undress, and he was talking to me. Another parent was watching us, and we started talking. When my son was in the shower, she made a comment basically asking what was his issue. I usually don't tell other parents that my son has an autism dx, because then most of the time they won't let their kids play with him, but for some reason this time I did. I said "he was autistic". She said "he doesn't LOOK autistic". WOW! Nice comment in reference to a Kanner child!