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Since my last update, I have had to remove all anti-fungals [including probiotics], because giving
any of them causes my kids to have bad bacteria issues. Anti-virals, except vitamin C, also cause
problems now.
I was giving #2 two grams of vitamin C per day, and #3 one gram. This is significantly reduced from
the 45 grams per day that #2 had been previously taking! I am also giving #1 one gram of vitamin C
per day, plus a few other things.
For #4, I was giving her 500mg per day of vitamin C, along with other anti-virals. She developed
what looked like a Stevens Johnson Syndrome reaction [burned skin under one eye, very red, bordering
on purple, with a blister]. At first I thought it was from the GSE I was giving, but the problem
continued even after I removed it. Then I thought it was from the Lauricidin, but the problem
continued even after I removed THAT. So then I removed everything, and the problem went away.
I added back the three other supplements one at a time, and it was the VITAMIN C that caused the
problem! So it was a toxicity reaction, not an SJS reaction, even tho it sure looked like one.
Shortly after I figured this out, #2 developed the same redness under his eye, and I removed his
vitamin C. About two days later, he was showing signs of needing it again, so I gave him 1 gram
instead of 2 grams, which worked well. During this time, neither kid had diarrhea, which is
supposed to be the symptom of too much vitamin C. #2 also became mean and aggressive, plus being
very oppositional/defiant, his visual stims increased again, his language reduced, and he
developed this redness under one eye just like #4 had done. Reducing the vitamin C eliminated
those problems. But, they NEVER had diarrhea during these times!
During this time, #3 started licking his hands again, and after licking them he would wipe the
bottoms of his feet. Of all the sensory stims that #3 has displayed over the years, this one
has driven us crazy the most! Also, he was becoming very mean and aggressive. Adjusting his
vitamin C level provided *some* reduction, but not much.
For #3, oral behaviors had in the past meant food intolerance or yeast overgrowth. After a LOT
of trial and error, I determined that now it partially means mineral deficiency [see below for the balance
of what this meant]. In the past, my #2 and #3
were mineral toxic, and I used IP6 to reduce the mineral levels. I did have to give selenium,
zinc, and magnesium, but the other minerals were at toxic levels.
I also noticed at the same time, that #2 was doing his hand-posturing again, which in the past
had been caused by improper zinc/copper ratio. And at about the same time #3 started the newest
round of licking, #2 started posturing again. Additionally, #2 was losing language again.
Adding zinc did not help the problems. I added a small amount of calcium along with magnesium and
vitamins D and K, reduced these issues [calcium without the other things, caused toxicity symptoms,
but with the other things, reduced the current problems]. These two things were helpful, but not
entirely. I then added a multi mineral supplement, which further reduced the problems.
So for the last 7+ years, except for a few failed attempts at supplementing calcium, my kids have
been calcium toxic. They even required about four months of high dose IP6 to reduce the toxicity
level. And now, 7 years later, they are now showing signs of calcium deficiency. It took that long
for their bodies to clear the excess calcium.
This mineral combination also partially reduced a residual scripting problem. Both #2 and #3 had started
a small amount of scripting again. [See below for the elimination of the scripting.]
Both #2 and #3 have athletes foot fungus around their toes, and also bloody cracks under the toe
joint where the toe meets the foot. I traced this to B vitamin [see update below].
Also, for now anyway, they are both doing well with a daily regular multi-vitamin. They have
never tolerated a multi before.
#3's language and social interest has really exploded. He will lead the prayer before dinner, and
he also participates and leads prayers in his Sunday School and AWANA. He can attend most events
without one of us there to help him as an aide. He wants to play baseball this summer, which we
will try to set up even tho he has never played before and most 9-year-olds already know how to play.
We bought him a T-Ball set for Christmas.
#2 is also doing well with language and social interest. If someone does something well, he will
say "good job!". His receptive language and auditory processing are now very good, still some
problems with expressive language. He is generally obedient, helps his siblings, plays well,
and his reading is improving. He says "please", "thank you", and if he accidentally hurts someone,
he will say "sorry".
Here are some pictures from the last month or so.
Christmas 2006
#2 on the swing
#2 and #3 on the swings
#2 with a Spiderman puzzle
#2 and #3 in the tree
#3 and #4 playing Sweet Streets in the yard
#1 playing piano at Cub Scout caroling, for residents of assisted living home
Observations and changes since the last update. I have posted these on and off on various message boards, so I will
basically just copy a few messages here, and make a few adjustments based on things I have learned since I wrote them.
I use oral/sublingual mB12. At first, it
caused massive problems, until I gave it with folic acid. Then it
worked okay, caused some improvements in behaviors, but not language.
It did cause yeast overgrowth also, which I addressed.
After several months, it started causing problems, including loss of
what little language he had. I thought he was then fully loaded, so I
removed it.
Several months ago, I started carnitine for two of my kids, neither of
which have muscle tone issues, but one of which was relatively short
compared to his siblings. I discovered that the carnitine caused symptoms
of B vitamin deficiency, which was odd to me because I thought my kids
were fully loaded. So I added in mB12 and folic acid again, plus the
other Bs, and this time it improved
language. It requires a boatload of folic acid. I read somewhere
that B12 requires folic acid for proper absorption, and it sure does
for my kids. If I don't give it with a boatload of folic, they get
severe and nasty deficiency symptoms. [see deficiency symptoms below]
I also discovered that I can add TMG in again [previously, it caused my son
to spit on his arm and play with it], and the TMG is causing nice language
improvements also. [See next update with more info on TMG.]
On another list, someone mentioned that Yasko indicates carnitine and
certain other aminos, plus some sort of vitamin C enzyme [I am not
that familiar with Yasko] open some sort of pathway, so I added whey
protein powder and vitamin C again. The whey protein powder was only
helpful for maybe two weeks. The vitamin C is being VERY helpful, and not
causing the burned look under the eye that it did before [see update above]. #2 currently has
a wart on the inside of his wrist, not sure which anti-viral will help with that because
the vitamin C is not reducing it. I am not using anti-virals right now, except vitamin C.
Similar issue with TMG. I gave it in the past, and it caused some
small improvements for a few weeks, and then it started causing
problems. With the carnitine, it is causing more language
improvements. I added each of these supplements one at a time, so I
can verify what each one has done for my kids.
Now, the mB12, folic acid, B100, biotin, TMG, and vitamin C, along with the
carnitine, is causing REALLY NICE improvements in language. The biotin alone
is keeping the yeast under control. My kids need all of these supplements together. And
incidentally, these are the only supplements I give right now, it does
look like these are the last supplements they need, altho I have thought this before and was
wrong, but I am hopeful.
Folic acid deficiency: scripting [which is obviously affecting his brain, so I
don't like it, but the physical symptoms are almost worse], hyper and meanness with mB12, severely
dry cracked bleeding skin, especially lips, heels, and fingers
[hangnails], thick nail beds, excessively thick or thin fingernails. severe cracks in the
underside of the toes [it looks like someone took a sharp knife and sliced his
toes on the underside, right where they join with the foot].
Biotin: dry brittle hair and nails, yeast overgrowth, thinning hair or hair
falling out, seborrhea, strabismus.
Here are some pictures from Christmas and Disneyland.
#2, #3, and #1 opening Christmas gifts
#4, #2, and #3 with moon shoes
#1 at Disneyland
#2, #4, and #3 in a climbing tree at Disneyland
Vitamin C and lysine ended up pulling out more viruses than OLE and Virastop did. They were also required to keep new
viruses from going straight into my son's brain. My #2's very large
wart that he had on the inside of his wrist, was entirely eliminated after about 3 weeks of lysine. For #3,
he had a nasty rash on his bottom, which appeared after the first day of lysine, lasted about 2 days, then
went away. #4 also got this same rash after giving her lysine, and it was gone after a few days also. I was able
to remove these about a month ago. My son was on vitamin C for many months, lysine for maybe a month.
The mB12 is now really helping their language and #2's remaining visuals. They needed boatloads of folic acid
for several months, but now they only need a reasonable amount for the proper absorption of the mB12. They still
need a little carnitine for proper absorption of the mB12, but not nearly as much as before.
I tried adding TMG because even with the mB12 and others [see above], there were still some lingering language and visual
issues. This caused yeast again, plus I had to increase the folic acid and carnitine. Apparently, both mB12 and TMG
require folic and carnitine for proper absorption. They needed TMG for approx one month, but now no longer need it.
They still need mB12, altho not nearly as much as they did earlier. They also need TMG. The folic and carnitine are
required for proper absorption of the mB12 and TMG. I add a little biotin every day as insurance against yeast overgrowth.
These are all the supplements that are currently required.
#1 and #4 still need a few anti-virals [vitamin C and lysine], mito cocktail and fish oil, biotin, and mB12/TMG/folic/carnitine.
Here are some pictures from Disneyland and Cub Scouts and a few other places. [For previous pictures, scroll up this page.]
#1, #4, #3, and #2 with the Cars gang at Disneyland
#2, #3, and #4 squinting into the sun and reminding everyone to wear appropriate clothing when visiting Disneyland's California Adventure Park
#2 crossing over to be a Webelos Scout
#3 crossing over to be a Webelos Scout
#2 and #3 at Cub Scout beach cleanup [#2 is at far left, #3 is at far right]
#3 and #2 playing at the beach
#1 and #2 playing at the pool
#2 playing at another pool
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