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Detailed descriptions of chelation, will leave this expanded version here temporarily
[ROUND 63-70, Round 25-28 for #1]
During these rounds, I decided to try a few supplements with my kids that they previously did not tolerate, but are generally helpful for autistic kids. I introduced the following ORAL supplements from my health food store, twice per day starting at lower doses and working up, in this order, with the following results:
Cal/Mag:
I finally found one my kids tolerate. If I give more than RDA of magnesium, it causes messy bms, but otherwise my kids do okay with this one.
B12:
For #3, anything over 100 mcg for each dose caused him to become excessively thirsty, very low frustration tolerance level, night waking, and start head banging. It is water soluble, so I think his body was reacting to the overdose by wanting more fluids, but he was not able to clear the excess before it built up and caused problems for him. But at the lower dose, he did show a small improvement in language ability. For #2, I am now using 400 mcg twice per day. He showed a slight improvement, but still noticeable, in focus and attention, plus a slight reduction in visual stims and an increase in language ability and social ability. Giving more than this caused night waking, more disobedience, and bms in his underwear.
B6:
For #3, similar reaction as B12 for anything over about 20 mg per dose. For #2, I am up to 80 mg per dose, and it caused another small but noticeable improvement in all the areas indicated above.
Folic Acid:
For #3, I never gave a high dose [high in my opinion] but leveled off for him at about 100 mcg per dose. For #2, he is up to about 700 mcg per dose. Same improvements as noted above, small but noticeable.
Carnosine:
I tried this one for #4 also, but it made her unable to keep her hands off things, so I stopped it. It helps #2 and #3 with attention, focus, language and social issues, altho not as much as other people have reported.
Vitamin A [TwinLabs Allergy A]:
Visual stims are #2's favorite stim, altho they are significantly reduced and some days not existent, but they do show up frequently. My kids still don't tolerate CLO. For #3, giving Allergy A caused problems with defiance, so I am removing it. For #2, I am up to 40,000 IU per day and not only are his visual stims entirely GONE, but it caused a rather MAJOR increase in language and social ability. Very nice!
Zinc [removed]:
Adding zinc helped my son's diarrhea problem, but after a few weeks his diarrhea returned, and removing the zinc stopped the diarrhea. For my son, it appears that high copper AND high zinc will cause diarrhea, so I only give zinc when it appears indicated.
During these rounds, #2 and #3 learned how to complete a 25-piece puzzle without assistance. They enjoy putting together the puzzles, then dumping them and starting over. They are also VERY MUCH MORE interested in looking at books. #2 enjoys copying the words from books onto his Magna Doodle, and when I say the words he is writing, he says them back to me and then stares at the words he wrote, trying to figure out how I decided what they said. He knows all his letters and numbers, so we will be working on phonics with him now.
They are both talking more now [this is good?] and they are noticeably easier to understand. #2 now knows the use of the word "my", as in "my cookie, my blanket" and other things. Before these supplements, he only knew possessives attached to a name, like "mommy's blanket".
Both of these kids now call me "mommy", for #3 he learned this about a month ago, but for #2 it was only after introduction of these supplements that he started actively calling "mommy" to get my attention. It is funny, I never thought I would ever get tired of my kids calling me mommy, especially #2, but some days I admit I am getting tired of it because it is usually more than one child calling me at the same time, followed by more than one request!
We have a board book of Linus using his blanket for a cape, tent, cave, other things. #2 became very interested in this book, and he got out his blanket and used it for those ideas.
#2 is very concerned now when we tickle #3, he will come to #3's defense! Before this time, he would laugh when we tickled #3, showing he knew what #3 was experiencing, but he would not have thought to help him. Also, #2 has been asking for hugs much more frequently than before, and even with other family members [grandma/grandpa, uncles, aunts] whereas before he only wanted hugs from mom & dad. He is much more obedient [this is VERY NICE] and now is no longer the exclusive problem when #4 is crying. Now it is usually #3 who is the problem LOL, altho I am hoping a reduction in the supplements above, plus removal of the Allergy A, will stop that problem for #3. #2 and #3 are significantly larger and stronger than #4, so this improvement in #2 and hopefully in #3 will be very beneficial for us.
#1 went to summer camp last week, this was his first time away from us for more than one night, and his first time when he was not either with us or with his grandparents. He voluntarily decided he wanted to go, and altho he reports he did cry on the first day, the other five days he has very good memories, he had fun, he made a "new best friend" [and he actually remembered to ask the boy for his phone number!], and when I asked him what was the worst thing about the trip, he said "coming home and having to say goodbye".
[ROUND 71-76, Round 29-31 for #1]
First will be new supplements added, next will be stories of improvements:
Vitamin C:
Have not noticed anything good or bad, but they tolerate it now. I will remove this when I run out and see if I notice any changes.
Vitamin E:
Same comment as above.
NAC:
Same comment as above.
Chromium:
Same comment as above.
NAC:
Same comment as above.
Milk thistle:
Same comment as above. I will keep this one for liver support.
Carnitine:
Same comment as above. I have removed this with no difference noted.
Selenium:
Nice improvement in behavior, somewhat in language. After a while this caused diarrhea for #3 [my kids' typical symptom when their bodies don't need something any more] so I removed it from #3 and he is fine now, but #2 still needs it.
Taurine:
Nice improvement in behavior, somewhat in language.
Zinc:
I did a 10-day round for round 76, and their copper levels increased. I added zinc for a few weeks, then had to remove it when they appeared to have a zinc overload [same diarrhea comment as selenium above]. So far so good.
B50/B-stress:
I tried giving B50 to #3 and B-stress [basically a B100 but has slightly higher of a few Bs and 1000 of B12]. This has produced very nice improvement in behavior and language. I discovered that a little extra supplementation of B6, B12, and folic acid *on top of* the quantities in the B50/B-stress is also beneficial.
EFAs [flax/borage]:
At first they still did not tolerate this one, but after several more rounds, I tried again. This time, they tolerate it, and very nice increase in spontaneity of language for #2, he no longer talks only when necessary, but will now talk "just because he can". Video scripting basically eliminated.
#1: [I don't supplement him much, except for basic multivitamins and occasional zinc and GSE when indicated.] He has voluntarily made friends with other kids on our street, and he stands up for himself when the other kids want him to do something he knows is not right. Other kids now come over to our house quite frequently and ask him to play.
#2: Most complicated statement to date is "hold my hand, cross the street". We have a Lionel train video which shows the trains crashing, and he will imitate the crashing with our Thomas trains. He tells me "be quiet" and puts his finger to my mouth when I tell him something he does not want to do LOL. We tease him by trying to steal his food, now he will tease us by trying to steal OUR food! Will also eat his apple sauce, for example, and then switch his empty bowl with someone else's full bowl. #1 taught him how to blow bubbles in the bath by putting his mouth in the water, he does this now and then laughs. They splash each other [and the rest of the bathroom LOL]. [Someone please remind me that learning by imitation is supposed to be a *good* thing!]
#3: The most improvement from him. I will call his name down the hallway and he will answer "yes?". Says "thank you" when I give him things he requests. Speaks in complete sentences. Says "look mommy, it's a puppy" and when I say "where's the puppy" he gets on his hands/knees and says "woof woof". Has also done this for kitty and cow. Dribbles basketball rather well [down our hallway, making "basket" into objects hanging on wall *sigh*]. If he spills something on the floor, he will retrieve a towel and wipe it. He is VERY jealous of any attention I give to #4 and will insert himself between me and #4 at every opportunity.
He had his first dentist visit a few weeks ago. After he grew several additional sets of arms and legs when I attempted to put him in the dental chair, he was nervous but cooperative and allowed the dentist to complete the entire visit [except x-rays].
His bday party was a few weekends ago, he is 6yo now. We ate cake and ice cream, and he and #2 fought over who got to open the presents. When my mother arrived, #3 pointed at her and said "Look mommy, it's Gramma!". Then when my father arrived [he drove separately because he had to leave early] #3 said "WOW hey look mommy, it's GRAMPA!!!!" Then #2 gave a BIG smile and said "It's Grampa" and went to give him a big hug, pulling #3 away because HE wanted to be the first to hug Grandpa. [Grandpa is special because he drives a train LOL.] Then everyone knows my kids love trains, so EVERY gift was train-related. #3 opened each one and said "Oh WOW look, it's a TRAIN!" and "Oh WOW look, it's ANOTHER train!" He put on all the train clothing, and had to stop and look at every train book. Then of course we immediately had to watch the train video. The kid thought he was in heaven.
Then #2 tried to take some of the gifts, saying "train MINE" and #3 said "NO! Train MINE! MY birt-day!"
Afterward, the kids splashed in our little blow-up pool [it was about 100 degrees outside] and threw a ball to each other.
The best part of this was seeing the looks on the faces of some of the relatives that have not seen my kids since both kids had no language and no interest in this type of social gathering..
Our Island of Sodor set up in the living room has become very opinionated. "Thomas go under tunnel." "No, Go-do go under tunnel." "No, Go-do go DAT way!" "No, Go-do go UNDER TUNNEL!" "Go-do stupid, Go-do crash." [Thomas then crashes into Gordon, causing major derailment.] "CRASH!!" "Go-do fall down." "Thomas owwie." "Kiss Go-do." "Kiss Thomas." "James go under tunnel." "No, Go-do go under tunnel." etc etc etc
#4: Talks enough for all the boys combined, and then some. Asks the same question OVER AND OVER AND OVER, ad nauseum. We are re-thinking our previous desire to have a girl at the end LOL.
View #2 and #3 artwork, click here.
[ROUND 77-80, Round 32-33 for #1]
#1 -- Would now rather play with kids in the neighborhood instead of being alone reading books about animals. Other kids seek him out, or he will seek them out. Becoming more independent. Doing very well.
#2 -- Plays with soldiers, dump trucks and bulldozers. Tosses or kicks balls to the others. Formerly, would only speak when it was required of him, and use the fewest number of words necessary to get his point across. Now he uses his words all the time, points, uses my name [mommy] to call me, says please and thank you, and does a lot of different things like that, words and gestures which are not required to get his point across. Answers most [but not all] who, what, and where questions. He is also imitating a LOT more, which can really get on my nerves when I forget that it is actually a GOOD sign! Vitamin A has addressed his visual issues, also appears to be addressing a viral issue [die off symptoms with higher doses, more language appearing].
#3 -- Plays with dump trucks and bulldozers. Answers who, what, and where questions. Says "I don't know" when appropriate. Speaks in complete sentences most of the time. Very competitive with #4. Potty trained himself [he was my last holdout, now NO MORE DIAPERS!].
#4 -- Very competitive for my attention. Talks ALL THE TIME, likes to be the center of attention.
[ROUNDS 81-84*]
During this time, I did high-dose vitamin A protocol for my #2, who has always had visual stims, sometimes more severe than at other times. This protocol did not "take", for details of what finally worked for my son, see the high dose vitamin A protocol page linked here.
I also did an elongated round 84 with ALA. I had planned to give ALA 2-3 times each day for 7 weeks. I went for 26 days, and then my son started having problems with the supplements I was giving him, which generally means he no longer needs them. So I stopped the "round" [during this time, both #2 and #3 were on the elongated round, but #4 did a round 85 and 86] and I removed all the supplements. I waited a week, then added back a few of them to see if my son still needed supplementation at all. He basically needed none of them, but I did keep a few which seemed to cause improvement.
The first day "off" all supplements, except cal/mag, was AMAZING. My kids were the best they have ever been, lots of language, lots of social playing, lots of just NT behavior. If this is how things go on the first "off" day [traditionally the worst day for my kids], I am excited to know what happens the rest of the week.
Here are a few highlights for #2 and #3 for the past month or so.
My kids were sick during this time period. Three of them were having major coughing and sneezing, runny nose, etc. I gave cold medicine the first night [with No-Fenol enzyme]. All 4 kids slept all night that night without problems [usually I need to re-dose the medication during the night for at least 4 nights, and of course they all wake up only semi-consecutively, so mommy gets NO sleep]. The 4th kid who was not sick the previous day did not get sick at all. The other 3 did much better the next day . In the past, they would all 4 be sick at the same time, for at least 7-10 days, sometimes longer. This cold lasted about 3 days for the 3 kids who were sick.
#3 is REALLY into Christmas this year. We put up lights on our house over the Thanksgiving weekend, and he said "look mommy, merry christmas lights house" and went around the entire neighborhood pointing at the other houses with lights. When we go to stores which have holiday decorations, he will say "look mommy, merry christmas trees". He also says "mommy, look at me" or "watch me" or "come here", or he says this to his brothers or sister when he wants them to watch him or join him. He will go up to people he does not know and say "hi lady" or "hi man", and if someone is crying, he will ask me "mommy, what's wrong with [name]?" His language is really improving, he uses complete sentences most of the time, loves to play with his siblings, has good pretend play, and overall is a real joy to have around the house.
#2 is gaining language at a very fast rate now. He is spending his days primarily with pretend play now, loves to play with his siblings, and is beginning to use words voluntarily. Before, he would use the fewest number of words possible to get his point across. Now, he will say "mommy" before requests, say please and thank you, and use other words which are not required to get his point across. He plays tea-party and dress-up with #3 and #4, talks on the play-phone [or anything else he can use as a phone, including books and toy cars] with grandma and various assorted trains from the Island of Sodor, rides scooters, and other things. His current "favorite" thing to do is to run down our hill and then fall down at the bottom and pretend to cry because he got "hurt". So when someone checks up on him, he laughs and gets up. He is also imitating a LOT, which is technically a good thing, but I am getting VERY tired of it LOL
#2 visuals did come back about 3 days after I had removed everything. I added back one capsule of TwinLabs Allergy A, but this caused him to be awake in the evening until after 10:30 pm, plus the next morning his visuals were still there. Very strange. I decided to try CLO instead of Allergy A. Major improvements [I discovered later the improvements were primarily because the dose of vitamin A was lower, he now only tolerates about 1250 IU vitamin A per day]. The following day, #2 had LOTS of language and pretend play. He put dolls in cradles and rocked them to sleep. Created rather complicated structures from Lincoln Logs and blocks. Played very nicely [nicer than usual] with #3. Even played with #4 without accidentally hurting her [which occurs more frequently than she would like]. More use of language in phrases, bordering on complete sentences. Overall very nice to see.
So right now, I give #2 and #3 a cal/mag supplement only. #2 also gets CLO. No other supplements. #1 and #4 just get a general multivitamin and cal/mag. They otherwise tolerate all foods, even without enzymes, and really don't have any issues left, except language delay which is improving every day. I *think* I am finished chelating #4. I am *relatively sure* I am finished with #2 and #3, I will probably do maintenance rounds once per month or so. I still have a few rounds to go with #1, because he has only completed about 40 rounds so far, and still has problems with yeast occasionally [I use GSE for that], especially when he eats lots of sugary foods.
I appear to have found a willing doctor, and I will be having my son's diagnosis removed later this year.
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