苦尽甘来---世界上最好的DAN!医生：儿子生物疗法记录

kwenma2

找到目前世界上最好的DAN!医生(排队3个月， 该医生是在DAN！会议上培训
其它DAN！医生的. Other Dan! doctors strongly recommend this doctor and think she's one of the best Dan! doctor in the world.)，开始儿子的生物疗法。希望通过此贴来记载儿子的治疗过程和进展。也想与大家分享有用的信息。。但是家长一定要在医生的指导下进行排毒和吃处方药。切记！另外行为疗法也一定要跟上。

My son was non-verbal, no eye contact, social interest...  

We did following recently:
-- start ABA in home.(only 10 hours per week by teachers)

-- Train him to blow bubbles, tongue movement for 2 months.. then he starts to open his mouth : say "Mom" , "奶奶", "拿来" within one week by Mom's ABA training. But it's only 鹦鹉学舌. no active language.

-- start GFCF diet (禁食); and start to give some supplements based on two DAN! practitioners;
This month ABA class increased to 18 hours.


-- start B6, Mag and DMG. 2-3 days after above supplements, he starts to have active language (can active call Mommy when he needs Mom).

-- start to see first Dan! doctor and start MB-12 shot;

-- start to TD-glutathione;

-- finish hair toxic analysis, OAT, viral test, stool analysis and other tests (totally 10 tests).

-- start to show some interest to follow other kids to crawl the McDonalds ball crawl. A liitle bit social interest.

-- first time see current doctor : Diflucan + Valtrex protocol to treat virals.
(more than 10 skin warts on his face shows virals issue. Also he has yeast problem).

Diflucan only took for 14 days. then stop. and start to use Saccharomyces Boulardii to control yeast.

Rash & lip swollen happened, yeast problem up because Valtrex stir up the yeast.
Add activated charcoal makes thing better.

-- phone consulting with doctor:
Add in taurine and GABA, then sleep improved. Now he can sleep through night for 9 hours. (previously every day almost wakes up during night.) However, if yeast is out of control, he'll wake up. So we add activated charcoal for him. Then sleep goes better again. Only in this month, I can have enough hours to sleep and can watch TV show sometimes after he sleeps, amazing:-)

Ordered OAT test for yeast. And also another test called porphyrins test (urine test for marker of heavy metal toxics, latest effective test) from Paris, France (now only this lab do this accurately in the world)  to determine the heavy metal marker.

Now he can have almost active words such as "妈妈抱， 出去， 麦当劳， 喝汤， 天线宝宝， 兰瓜， 白车， 猪油， 乖宝宝爱妈妈(爸爸，爷爷，婆婆)， 妈妈开车，婆婆坐车, two more, blue, pink, red, green, big bubble, big ball, more please, count from 1-10, A-Z". although it's still limited to these small amounts of words, I already felt happy.

use up Saccharomyces Boulardii, then using GSE for one week and then switch back to Saccharomyces Boulardii to control yeast. During GSE, his stool become loose ( 2 times per day). And finally I knew it's because high-phenol in GSE, we shall add No-phenol enzyme together with GSE. Also another possibility is that the stool can be worse when the anti-fungal is effective. So we shouldn't stop the GSE, we shall push through with more activated charcoal for at least 2 weeks.(learnd this from our DAN! doctor on 11/06 consultation.)

Also Add candex(one kind of Enzyme) for yeast control starting from Nov.1. --- this is decided by me and I confirmed with my DAN! doctor.

This month starts 2 hours speech therapy per week. 1 hour early intervetion.

2006/11/06: phone consulting with doctor: OAT test shows Diflucan is not effective to yeast control. So will put Sporanox(prescription drug) on. Also will have blood test for liver/kidney check because of using Diflucan and Sporanox.

Also will start chelation. Since my boy has high lead and mercury from the porphyrins test, choose EDTA supporsitory for 1 month to pull out lead and then use suppository DMPS. I am looking forward any good news from the chelation process. Our protocol is 3 days on , 4 days off.And in the 3 ON days, need more mineral supplements.   

starting from today, ABA class increased to 24 hours per week.
Now totally 27 hours class (including ABA , speech and early intervention )per week.
We are looking for more hours either ABA or floor time.

I will try to add ViraStop (another Enzyme, it's effective for Valtrex to kill virals) this month. --- this is decided by me and I confirmed with my DAN! doctor.

Also will add CoQ-10 because his OAT test showed his shorting of it. --- this is decided by me and I confirmed with my DAN! doctor.

ok , I will add more next month to track the status.

BTW, I will attend the Greenspan's Floortime annual conference and parent training this week. And then RDI parent training. I want to add more flexibility into my son's behaviour training because ABA is not flexible.

kwenma2

下面引用由honghong18发表的内容：


Thanks for sharing. 上述测试是测体内重金属还是排出的重金属?请讲一下尿液收集过程.

it's the first morning urine. only need 10ml. for details, see:
http://www.labbio.net/pages/autisme_envir_intoxication_eng.htm

My Dan! doctor determine to use EDTA and DMPS based on this test.

kwenma2

下面引用由pengxc发表的内容：

Could you tell me where to buy  suppository DMPS? Thanks a lots!

We got prescription from our DAN! doctor.
我认为排毒药需要医生的处方。 千万要在医生的指导下进行!!

kwenma2

One thing:

If your kids took DMG, please make sure to take it before noon. If take B6, please be sure to take before 4:00pm. Otherwise, kids would be too hyper and affect sleep.

kwenma2

another thing:
Taurine and GABA are better to take at bed time because they are good for sleep. First several days, my son took above in the dinner and we felt that he's so tired in the evening and does not want to play. Then we changed to bed time, it's better.

kwenma2

下面引用由加加爸爸发表的内容：

CONGRATULATION!
WAITING FOR YOUR SON'S MORE INPROVEMENT AND YOUR EXPERENCE SHARING OF RDI & GREENSP...

Thank you! I hope every kids here can have improvements with both biomedical & behaviour interventions.

I also hope that every parent can get some experiences and then make more progress for their kids.

kwenma2

下面引用由pengxc发表的内容：

在中文网站，能讲中文吗？

I want, but it's too slow for me to type Chinese. It'll take me almost 10 times time than I typing English. However, I want to share my experiences to you. So sorry about that!

我将尽力而为...

kwenma2

昨天才从第10届地板时光年会上回来，感触很深。Greenspan (chairman)and Serena Wierd (vice-chairman) 做了专题报告。Rocki 医生报告中述说她15年前找Greenspan做地板时光时，Greenspan 谈到她小孩将来上大学怎么样，她还感到迟疑。而现在她告诉大家她的小孩将在明年春上大学。怎个过程充满了感情和眼泪。

综合我这几天的学习和会议，地板时光很能调动小孩的积极性，引导他们主动走出
自己的世界。有些小孩对ABA不应，但2-3个月地板时光训练后能主动找大人交流。

我专门去问了一下Serena关于地板时光在中国的情况。了解到目前中国只有香港才有训练
师。不过大家也不要失望，因为地板时光是主要由训练师训练家长，再由家长训练
小孩。有条件的家长可去培训，无条件的家长可买书来自己学习。我还打听到Greenspan的“CHILDREN WITH SPEICAL NEEDS” 有中译版，是台湾发行的。有兴趣的家长可上网寻找。

Also I will post some detailed info from the conference to train you to do floor time later.

kwenma2

下面引用由5i52发表的内容：


期待！

我才知道“CHILDREN WITH SPEICAL NEEDS” 有中译版，那本书不错，可以算是Floor Time的教材，值得一读。

你有没有买他的DVD？

他的新书...

Yes, I bought the DVD ( I only boought the first one of those 3).

His new book "engaging autism" is in my bag and I already read 100 pages. It's good! I guess now no one translate it yet.

kwenma2

刚从RDI家长2天的培训回来。
最近两周小孩表现有一定的进步。
11/06/06： 吃VALTREX 30 天，反应(生疹子，嘴唇肿等现象)都消失。从头一天开
始消化酶由休斯顿的换成了KIRKMAN。我们发现小孩对KIRKMAN的消化酶挺有反应。
因为两月前吃KIRKMAN时，他就有较好的反应。这次不知是VALTREX起作用还是KIRKMAN
消化酶起的作用。我觉得两个都起了作用。因为如果只是消化酶起作用，效果不会
那么明显。
老师反应上课效果好，而且他的情绪也变好。

11/13/06： 开始吃抗酵母菌的处方药Sporanox，并且开始EDTA肛拴排毒。
这一周他的进步有：
(1) 开始唱歌：老师唱上句，他接最简单的下句 (依呀依呀哟)。这是他从来没有过
的。
(2) 说话有进步：开始说“主+谓+宾” 的简单句。比如：当早上起来要下楼时，他
主动说“妈妈抱宝宝”。主动语言，而且愿意跟你说。
(3) 开始主动玩与人的游戏。那天晚上主动逗爷爷要爷爷抱，但当爷爷真抱他时，
他又说要妈妈抱。 等妈妈抱了他到另外一间屋时， 他又跑到爷爷的房间主动说
“爷爷抱”并且笑。如此折腾了几个回合。爷爷躺在床上，他也爬上床躺在爷爷旁
边。直到爷爷说要关灯睡觉(他不想睡觉)， 他一下子逃开了。

kwenma2

关于FLOORTIME的信息，在中国香港有一个点开始做。有感兴趣的家长可问我要，我
就不贴在此，免得有“托”的嫌疑。

kwenma2

另外我开了一个新贴专门关于FLOORTIME。

kwenma2

Here's the online bookstore:
http://www.eslitebooks.com/cgi-bin/eslite.dll/search/book/book.jsp?idx=1&pageNo=1&PRODUCT_ID=2680097327006

特殊兒教養寶典 上下 (2冊合售): 促進智力和情緒成長的全新療法  

  The Child with Special Needs
作者／ 葛林斯班/ 薇德/ 西門絲 (Greenspan, Stanley I./ Wieder, Serena/ Simons, Robin)
編／譯者／ 劉瓊瑛
出版社／ 久周出版文化事業有限公司
出版日期／ 20051201
商品語言／ 中文/繁體
裝訂／ 平裝

kwenma2

下面引用由田文雁发表的内容：

kwenma2:你好！
我想了解FLOORTIME.我的邮箱是：twy958@yahoocom.cn  
电话是：１３９７１２７２２６６
谢谢！

田文雁:
your email address is not correct. <twy958@yahoocom.cn>:
The email is bouncing back.

kwenma2

下面引用由wildrose发表的内容：

I wanna ask kwenma2 how to connect the Best DAN Doctor who you mentioned on the BBS.

I have Visa ...

I will sent my DAN! doctor info to your email account.

Normally here, you need to make an appointment with the doctor through a phone call. This Dan! doctor take us 3 months to start the initial appointment after we made the phone call.

The initial appointment costs $500--$1500. Normally the first appointment needs you to take your child to their office. They'll have a roughly phyical check and  then start some tests. However, for tests we can do in our local place (draw bloods or urine test in home).So only the initial appointment we shall meet with them if we are too far away.

Then after that, you can consult them through either phone or email every 1 months. They charge you for consultation fee from $175-$400 per hour.

It looks like it's possible to see any DAN! doctor in USA. But we still want to get a close by doctor so that we can go to meet them just in case. If you are in china, I think you can do in this way. But at least I think they require you come to see them at least every 1 year I guess. You can "double check" with them to see whether they can do it remotely after their initial appointment.. I used to call doctor Stephanie Cave's office (Stephanie Cave is famouse because she already chelated more than 2500 kids. And she and Amy Holmes previously were cooperative.After Dr. Homles retired, she took over all Dr. Holme's patient.) and they can not do it remotely, the doctor needs to see the kids. I am not sure how often they want to see the kids because I did not get email back from Dr. Cave. However, for my DAN! doctor, she have such flexible option for us to use so that we won't go to her place so often.

Yes, I have done the two days RDI pareny workshop in Texas last week.

kwenma2

下面引用由pengxc发表的内容：

看来你是全方位治疗啊，抗病毒，抗霉菌(sporanox贵吗？)，消化酶和排毒的药物一起上，希望效果卓著啊！

在感恩节里，谢谢你的爱心和付出。

谢谢! 我希望通过我的治疗记录能让大家多获得一些信息，从而少走弯路，能让更多的
孩子争取宝贵的时间获得治疗，甚至恢复。我想我的心情与其他家长是一样的。

抗霉菌(sporanox贵吗？): it is covered by insurance. So for us, we only pay copay, maybe $30-$60.

kwenma2

上周谈妥，私人雇一个ABA老师到家给小孩上课，增加6小时的ABA。本周开始感统个
训3小时。因此小孩的每周个训时间将达到38小时(ABA(30小时在家，老师来)+感统
(3小时)+语言个训(3小时)+FLOORTIME(2小时，私人雇) )。 小孩太忙了！私人雇
老师也太贵！！还好州政府负责24小时的ABA 和2小时的语言课，保险公司负责感
统和另外的语言课的80%的经费。

kwenma2

EDTA 肛拴排毒的三天大便较稀。我认为属正常反应。

这一周小孩说话又有一些进步。能感觉得到。虽然不多。
能主动说“主+谓+宾”的句子增加了一些。而且自己开始造词。昨天语言老师让他
坐在一个绿色的小椅子上帮他穿鞋，他站起来指着旁边的兰色的椅子说“BLUE
CHAIR”。老师好高兴！

最近这两天开始特喜欢爸爸。看见爸爸，马上主动看着爸爸并且笑容满面地喊“爸爸”。
声音特带感情似的。 爸爸离开后，便主动跑过去找爸爸，边走边喊“爸爸”。有一
次突然想起要找爸爸，自己跑上楼，嘴里说“找爸爸”，最后在楼上找到了爸爸。


昨天带他到一个语言评估中心去。专家建议我现在应开始侧重将动词加入到他的语
言中。因为他现在说的多数话(英语)都只有名词和形容词。

最近睡觉基本上不错。一晚上能睡9个小时不醒。这是我们以前作梦都奢求的。
但是有一天晚上的杏仁奶内忘记放消化酶， 他半夜起来胡闹了10分钟。我下周周末
准备再试一下看是否一样。若是，坚果类的东西最好少吃。

kwenma2

我们小孩的ABA安排是：
每一个老师只上2小时。每上15-25分钟(时间长短取决于小孩是否ENGAGE)，然后休
息5-10分钟(老师跟小孩FREE PLAY)。然后又上课.都是一对一。
每天有三个老师来家。        

kwenma2

这两天ABA老师要求家长在上课时间不准进入房间。儿子哭了两天(每天的6小时ABA课
等於哭下来的)。但从第三天起就没哭了，房间门打开的，婆婆坐在门外。
昨天他看见婆婆要去上洗手间，他居然拉着婆婆手说“婆婆不PEE-PEE”。“PEE-PEE”
是英语的“尿尿”。嘿，他居然能自己用“不”来组句了。

昨晚我们要雇的FLOORTIME的老师第一次上家来面试，儿子很高兴。看着老师并且挥
手说“嗨”。叫他叫老师好， 他也叫。情绪也好，眼神也好。说老师要走了，他跟
着我们下楼去主动给老师开门。老师走时跟我说：“你儿子很SOCIAL”。我听了很
高兴。希望他出门在外时也能如此就不错了。我发觉儿子对家里来的客人通常都感
兴趣，眼神也好。但是到外面去玩时就差别很大。不知其它家长有无此感觉？

昨天白天他不愿意睡午觉，昨晚一下破天荒睡了11小时。这是他从来没有过的。他
以前在这种情况下顶多睡10 小时罢了。凑巧昨晚晚饭消化酶不小心多放了一颗，难
道是消化好了晚上肚子舒服，酵母菌得不到养分，从而睡觉好？？ 我得实验一下。
也许儿子饭量相对于他较大，平时消化酶没给够？

今天早上老师来了，我从房间内退出来，只剩儿子和老师。儿子望着我，我说“妈妈
上班，你PLAY”，他居然喊“婆婆来”。因为昨天是婆婆坐在门外。我很高兴，因
为他能正确地应用语言来表达他的意思了。看来最近他的主动语言终於来到了！！