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March 2005 Update

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]:
Vitamin E
B50 [my lower doses above]
Vitamin C

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.



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]
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
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:

Flax oil

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

Supplements I still give daily:

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!

Camping, Labor Day Weekend, September 2005:

#2 in bed
#2 in bed

#3 in bed
#3 in bed

#4 in bed
#4 in bed

#4 playing in the sand
#4 playing in the sand

#2 and #3 playing in the sand
#3 and #2 playing in the sand

#2 and #3 on a rock
#3 and #2 on a rock

#2 and #3 on a high rock
#2 and #3 on a high rock

#1, #2, and #3 on a high rock
#2, #3, and #1 on a high rock

#1 in a kayak
#1 in a kayak

Update, December 2005

My #2 and #3 caught a cold just after we returned from our camping trip over Labor Day weekend [scroll up for some pics]. For two days, it was a regular cold, but on the third day I basically watched the cold virus go right into their brains. It was like "regression on speed" because they had total regression in about 4 hours, especially for #2 who lost all his language and social interest, and started up his visual stims again. VERY FRUSTRATING!!

I added lots of vitamin C, and it appears that their bodies entirely depleted their vitamin C stores in fighting this virus, because adding the vitamin C was very helpful. I used as much as 3-4 grams of vitamin C daily for #3, and twice that for #2, with good results. I also added back OLE and ViraStop enzyme. However, it was like their immune systems just were not able to handle a simple cold virus, without the virus going right into their brains.

I experimented with some immune boosters. Colostrum was VERY beneficial, I was able to reduce the dose of OLE by adding in lots of colostrum. Also, astralagus root was beneficial also. But still, I could tell that something was still not right.

On one of my message boards, I was reminded that low iron levels can suppress the immune system. My kids had been iron [and calcium] toxic, and I had used IP6 with great results. However, I wondered if I had given it for too long, and depleted their iron reserves. So I added back half a children's multivitamin which contained iron, and the difference on the first day was noticeable. After three days, I removed the daily dose of the vitamin, and now I only give half a multivitamin about 2x per week.

When I first started the vitamin C, OLE, and ViraStop, the cold virus started coming out of the brain. Both kids basically developed a regular cold again, runny nose, sneezing, coughing, etc. When I added the colostrum, #3's cold really got bad, and #2 developed the viral "die off" rash all over his body, just like he had the first time I did anti-virals, along with his cold. Adding the astralagus root increased the symptoms again. Adding the iron increased the symptoms to the point where I had to give them both cold medicine so they could sleep at night.

It has been about 2 weeks, and things are going well. I was able to reduce the OLE for both kids, and their yeast overgrowth issues [viral die off causes yeast for my kids] has reduced to the point that it is controllable for #3 with just probiotics and Candidase, altho #2 still needs GSE as well. Language and social interest is really improving again, and things are mostly back to "normal", altho the viral die off is still occurring, especially for #2, so I need to continue the OLE and other anti-virals for the near future.

#3 has decided that he wants to do the chore of picking up the dog poops, and no one protested him taking over that chore! #2 wants to empty the trash every day. Both kids actually volunteered for these chores, I did not have to assign them. Every day #3 goes outside on his own and picks up the poops, and every time #2 sees the trash can full, he will take it outside and empty it into our larger cans at the back of the house.

We put up our Christmas lights on the outside of our house, and all the kids helped. They are all really excited about Christmas this year.

Update, January 2006

[Christmas pictures links at the end here. #2 is on the far right of both pics.]

I read somewhere, last week, that biotin helps the immune system. I went to the sources of info I have, and none of them mentioned biotin helping the immune system, but I thought I would give it a try anyway.

Here is what happened, including a little relevant history.

I use biotin at relatively low-medium doses [like 1000mcg] for two of my kids, but I give higher doses to my #1 and #4 who have really thin hair. Biotin has helped me personally with sebbhorhea issues, and thin hair issues. The biotin for those kids is really helping. My #4 basically had no hair until she was about 4 years old. Now she is 6-1/2 and has lots of thick shiny hair. Additionally, she has one eye that tends to wander outward, and it goes straight if I give her anti-virals and biotin.

Other relevant recent history: A few days ago, I gave #2 some OLE in the evening and forgot the GSE for yeast control. He woke up in the middle of the night crying and complaining of "owwie ears". I gave him some GSE and that resolved the problem. He had yeast in his ears.

So the next day, I gave #4 extra biotin, because she is already on anti-virals and her eye was still wandering outward. I gave her 5mg instead of just 1mg. Her eye went straight again, but a few hours later, she was crying and complaining that her ears hurt. I gave her some GSE and 30 minutes later her ears were fine.

Biotin has never caused yeast before, and because of my #2's recent experience with OLE without GSE [viral "die off" causes yeast for my kids], I decided to increase #2 and #3 biotin dose, along with giving their regular vitamin C and OLE and ViraStop for virus issues. So I gave them 5mg biotin with their first dose of anti-virals etc in the morning. [I give anti-virals 3x per day.]


About a hour later, I had to give #2 extra GSE because his yeast behaviors were really bad, even tho I had given him the regular amount of GSE that has always helped him with viral die off.

After the second dose of anti-virals with the regular amount of GSE [no biotin this time, or extra GSE], #2 started craving apple juice, which for the last year or so has meant he either needs more vitamin C, or he is wanting to encourage yeast growth because his bad bacteria levels are increasing and I need to reduce or drop the GSE. I already give him a LOT of vitamin C, so I speculated he must not need that much GSE.

Later that day, after the third dose of anti-virals and a slightly lower amount of GSE, #2 drank more apple juice and then about an hour later, threw up all over the floor. Unfortunately, this was at Christmas dinner last night LOL

For the second day [today], I dropped the GSE entirely, except for just one drop [previously, he was requiring *significantly* more than that just to keep the yeast under control]. I kept everything exactly the same, except I reduced the GSE to just one drop and I had added the 5mg biotin to the first dose of the day.

No yeast issues whatsoever! Absolutely none. Whereas the previous day when I had first given him the biotin, I had to give him so much GSE I was really concerned about his liver. But today, with only one drop of GSE and the same dose of anti-virals, he has had no yeast issues whatsoever, plus he is using his language more, he is much more interactive, singing Christmas songs, playing with his new toys, etc. All of this, despite the fact that ever since I watched a cold go right into his brain and had re-started anti-virals last September, he has been sick with a cold as the cold virus has been coming back out of his brain. And for the last week or so, he has had a relatively severe cold [so has everyone else in my family LOL], which I don't know if it is from a new cold virus on top of what is coming out of his brain, or if it is all because of viruses coming out of his brain.

He is really calm today, watching his brother playing a new computer game [Rollercoaster Tycoon], making comments on the game, telling his brother to make a new rollercoaster, basically being a "regular NT kid with language delay".

According to my favorite site for nutritional info, biotin helps with protein and fat digestion. My son needed mito cocktail and amino acids, especially taurine, to tolerate EFAs and properly absorb fats. I checked other sites I have, but none of them mention more than just in passing that biotin helps with the immune system. But based on this experience, it sure does.

Update a few days later:

Interesting phenomenon happened over the last two days. I increased my son's biotin to 5mg 2x per day instead of 1x per day, I gave it with the first two daily doses of anti-virals, instead of just the first dose. On both days, my son started falling asleep about an hour earlier than usual [he was falling asleep even BEFORE I started reading the bedtime story], and he slept a LOT longer during the night than usual.

Christmas 2005 with Santa
Christmas 2005 with Santa

Kids with Snoopy for Christmas
Kids with Snoopy for Christmas

Update, April 2006

Scripting started being a real problem for #2 and #3. In addition, #4 will ask a question that she knows the answer, and if I don't respond in 0.000001 seconds, she will ask again and again. I read someone's message that B12 helped with this, but every time I add B12 now, the kids will *lose* language [they are fully loaded]. However, it did seem to help with the scripting.

But, then I realized that every time I give B12, I also have to give folic acid. So instead of giving both B12 and folic acid, I just gave the folic acid. Bingo! No more scripting!

I increased the folic acid and over the next week I noticed the following improvements in my kids: no more scripting, no writing letters in the air, #3 can get the words out without "whole phrase stuttering", #2 hangnails and thick nail beds were eliminated, #3 cracked skin on the edges of his heels was eliminated, #1 and #2 articulation is improved, #4 stopped asking endless questions, and for ALL of us [even me LOL], their skin is baby soft now, just like a newborn!

Right now, the only supplements I give are vitamin C, OLE, Virastop, and a little probiotics and GSE [all for anti-viral plus the yeast it causes, altho not nearly as much yeast as before], and folic acid.

Scroll up if you want to see Christmas pictures. Below are pictures of #2 on his bday, and doing archery.

#2 on his 10th bday
#2 on his 10th bday

#2 with #4 on his 10th bday
#2 with #4 on his 10th bday

#2 archery
#2 Archery

#2 archery
#2 at his target

Update, June 2006

The anti-virals were VERY effective at eliminating my #2's OCD issues, but after about 7 months, he started OCD issues again. At first, I thought I might need to increase the anti-virals, but doing that caused MORE OCD issues. So I first decreased, then removed, the anti-virals. My son is now doing better than ever! This is a typical reaction for my son. Once he no longer needs a supplement, it will *cause* the same problems that at first it eliminated.

#2 playing house
#2 playing house

Update, November 2006

After much frustrating trial and error, I have determined that my son needs high dose vitamin C, plus Virastop enzyme. Apparently, his immune system is working on its own to eliminate viruses that are in his brain, but it needs LOTS of vitamin C to do it. I am currently giving him 45 grams of vitamin C each day [45,000mg], and as is typical with viral "die off", it is causing a lot of yeast. A few months ago, my son needed a LOT of GSE to eliminate this yeast, but recently I have been able to reduce the GSE dose to only one tablet with each 15 grams [I give 15 grams plus one Virastop, 3x per day]. If #2 does not get this much vitamin C, his language and social interest disappear, and his visual stims come back. However, with this much vitamin C, his reading is really doing well, he is starting to learn phonics and not just depending on sight words. He also comes to the aide of his siblings when we are tickling them, and then sometimes also turns on them and tickles them with us! He also plays "red light green light" with his siblings on their scooters.

#3 also needs high dose vitamin C, I am giving him 30 grams per day [10 grams 3x per day], plus the Virastop enzyme one capsule per dose of vitamin C. He no longer needs any anti-fungal except one probiotic capsule with each dose. If #3 does not get this much vitamin C, he becomes very mean and aggressive. With vitamin C, he taught himself how to blow his nose, and he wants to play baseball. He now can attend his weekly AWANA group without one of us there as his aide.

I am giving vitamin C to #1 and #4 also, and their remaining issues are slowly resolving, altho I am not giving as much as the doses listed above.

It may just be the timing issue, because this appears to be the final intervention my kids require, but it seems very odd to me that they developed the most language and social interest, not with EFAs or mB12 or any of the other things that usually help with language, but with vitamin C!

Here is a picture of #2 in a shirt I bought for him for $4 at Target. This shirt is just PERFECT for him!

#2 in his perfect shirt!
#2 in his perfect shirt!

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