治療自閉症

owl_2046

hi, myson727
我都想要呢位醫生資料, 麻煩你PM我
Thank you so much!

原帖由 myson727 於 10-7-26 13:28 發表
I have pm the info. of my doctor to you.

starfish

﹔hi, myson727
我都想要呢位醫生資料, 麻煩你PM我
Thank you so much

食咗半年蘋果提純+乙酸(麻痺)半年, 個個月去去尖沙咀入貨, 半年已使咗成萬蚊, 都現在亦沒有甚麼進展.
暑假攞咗樽蘋果提純+乙酸(麻痺) 俾2個兒科醫生睇, 佢地兩個都話這兩樽(Food supplement) 沒有註明有甚麼Active Ingredients, 只很表面寫上些生果/植物.  錢用了不緊要, 但日日阿仔究竟食緊勿? 食到幾時先至可以停? 日日咁食有冇問題?  醫生講得啱: 「既然咁得, 就係药, 就要寫明Active ingredients同成份, 就要小心用, 點可以隨便講兩句就日日俾細路仔食, 大人都唔得,要醫生或藥劑師指示啦! 醫生問我點解全世界其他醫生/藥廠唔識用? 若果只係普通健康食品, 又何需咁貴食成千幾蚊個月, 半年成萬蚊? 」
俾醫生話完, 諗吓又係, 自已都唔係蠢, 只不過我地作為A 仔的父母, 只要聽到有可能幫到BB的, 都會試.  但諗吓每個月去到尖沙咀幫親間健康食品店, 俾錢見到那位全身鑽石富泰的胖胖老板娘, 我D錢真係幫到我個仔?

pattsui11@yahoo

myson727,
請問你覺得你的小朋友 進步/退步 是與生物療法有關，還是與食物敏感有關？

(食物敏感不一定是顯於皮膚，可以是引起肺部敏感、腸部敏感等)

原帖由 myson727 於 10-7-26 14:07 發表
我開始試生物療法時，心態和你說的一樣，好多嘢都唔食得，我個仔超喜歡吃意大利粉、麪、....總之有小麥及有奶，都要幫他戒，"細路好慘"，大人更慘，有時想買些特別小小的糖慰勞下他，一看成分表，都加左奶，唔買得，有時去到超市，都唔知買甚 ...

myson727

Hi Starfish,

醫生資料已PM給你。
很明白你的感受，身為父母，當然想盡力去試...其實大家都是從過去中學習的，不要灰心啊！

原帖由 starfish 於 10-9-6 13:36 發表
﹔hi, myson727
我都想要呢位醫生資料, 麻煩你PM我
Thank you so much

食咗半年蘋果提純+乙酸(麻痺)半年, 個個月去去尖沙咀入貨, 半年已使咗成萬蚊, 都現在亦沒有甚麼進展.
暑假攞咗樽蘋果提純+乙酸(麻痺) 俾2個兒科 ...

starfish

myson727

Thanks a lot!  Thanks for understand my feeling.  不過明知正常健康食品不需食成萬蚊半年,有時真係有種感覺明知唔有唔妥,但重個個月去尖沙咀入貨,好似好唔理智!

myson727

據我自已的有限認識(知資來自上網、看書及聽醫生的講解)，生物療法是包括多方面，戎口(即GFCF)只是其中一環。

如果講A仔對含穀膠蛋白和酪蛋白敏感，又不準確，因為生物療法的出現，都是研究的人，發現A仔一些常見的情況，例如腸炎(*80%A仔有腸炎)，免疫力失調，自身排毒(重金屬)差等等的情況，就因為腸炎(腸漏)，穀膠蛋白和酪蛋白未完全消化的情況下，形成鴉片縮氨酸，其性質好像嗎啡一樣經由腸的小洞(腸漏)進入血管，最終傳送至腦部，所以GFCF是避免毒素進入身体，也要吃藥醫腸炎，也要補充益生菌及消化酶，也要.........

所以你問我個仔的進步，是因整個"生物療法"，缺一不可。


*Data from "Changing the course of autism"

原帖由 pattsui11@yahoo 於 10-9-6 15:33 發表
myson727,
請問你覺得你的小朋友 進步/退步 是與生物療法有關，還是與食物敏感有關？

(食物敏感不一定是顯於皮膚，可以是引起肺部敏感、腸部敏感等)


...

[ 本帖最後由 myson727 於 10-9-7 15:05 編輯 ]

jellomama

Hi starfish,

If you do a Google search, there are info which indicate that Acetyl-L-carnitine (乙醯肉鹼) can help to treat autism.

I've posted the info below on p.9 (#178) of this topic but it was a long time ago so perhaps not many parents have read it. So I'm going to post here again what I've found:

IMPORTANT INFO
****************
To all parents here, including myself, who have a concern whether there is any medical/clinical research (another source other than Dr. Ku) saying that acetyl L-carnitine (乙醯肉鹼) may be used to treat autism. I have found a research paper from the internet which mentioned about it.
The paper was published in the American Journal of Biochemistry and Biotechnology in 2008.
The link is:

http://www.autismresourceconnection.com/documents/Mitoandautism2008.pdf

It has always been believed that autism has to do with some malfunction in the brain.
In this paper titled “Evidence of Mitochondrial Dysfunction in Autism and Implications for treatment”, on p.211, it says:

Potential treatments of MtD in Autism
Nutritional supplements and antioxidants: ……. In animal studies, acetyl-L-carnitine restored partial mitochondrial function and muscle activity…….
-----------------------------------------------------

Note:
MtD = mitochondrial dysfunction

原帖由 starfish 於 10-9-6 13:36 發表
﹔hi, myson727
我都想要呢位醫生資料, 麻煩你PM我
Thank you so much

食咗半年蘋果提純+乙酸(麻痺)半年, 個個月去去尖沙咀入貨, 半年已使咗成萬蚊, 都現在亦沒有甚麼進展.
暑假攞咗樽蘋果提純+乙酸(麻痺) 俾2個兒科 ...

jellomama

Starfish,

How much 乙醯肉鹼 & 蘋果提醇 is your child taking per day? My experience is that if you take two spoonful each twice a day, it'll cost about $5,000 for 6 months. True, it is not cheap but Dr. Ku (he is not a 醫生, he is a 免疫學博士) gives free advice to people and of course he needs to charge a premium in making profit to compensate for the time he spent. This, I can understand.

Apart from cost, if you DO NOT notice any improvement in your child or you don't have confidence, my suggestion is that you try something else. There are a lot of different theories/treatment out there. So many that we cannot afford (time & money) to try all.

I didn't try many other treatments but I chose 乙醯肉鹼 because I noticed improvement in my daughter. It was definitely much effective than 舌x which I spent $45,000 in 6 months and it was very time consuming but less effective!

My daughter has mild development (big muscle) and speech delay. We once were very concerned that she was autistic. Now, I know that she is definitely not.

She has been taking 乙醯肉鹼 & 蘋果提醇 since March 2008 and continues to do so, but lesser portion due to lack of time. There is no side effect on her at all.

Hope this help.

原帖由 starfish 於 10-9-7 14:39 發表
myson727

Thanks a lot!  Thanks for understand my feeling.  不過明知正常健康食品不需食成萬蚊半年,有時真係有種感覺明知唔有唔妥,但重個個月去尖沙咀入貨,好似好唔理智! ...

owl_2046

呢個亦係我心中一個問號? 而家冇副作用, 唔代表之後冇, 但又有媽咪話有效(但佢地亦有其他3T治療)
佢問舖真係人山人海, 好多人買成幾仟蚊其他補健食品.
佢個老婆同個仔都好肥好富泰咁款

原帖由 starfish 於 10-9-6 13:36 發表
﹔hi, myson727
佢地兩個都話這兩樽(Food supplement) 沒有註明有甚麼Active Ingredients, 只很表面寫上些生果/植物.  錢用了不緊要, 但日日阿仔究竟食緊勿? 食到幾時先至可以停? 日日咁食有冇問題?  醫生講得啱: 「既然咁得, 就係药, 就要寫明Active ingredients同成份, 就要小心用, 點可以隨便講兩句就日日俾細路仔食, 大人都唔得,要醫生或藥劑師指示啦! 醫生問我點解全世界其他醫生/藥廠唔識用?  

AprilLove

Hi! May I have the contact of the docor also...
Please PM me if you have!
Many many thanks!

jellomama

Take a look at p.43 (reply #853) of this topic.

原帖由 AprilLove 於 10-9-8 11:56 發表
Hi! May I have the contact of the docor also...
Please PM me if you have!
Many many thanks!

甜豆

我個女唔係自閉, 但我覺佢係專注力失調, 睇左咁多個post , 我最後選擇試一下, 不過我就無去睇dr. , 我去左一間專買自閉兒童食品的中心, 買了一隻Acetyl-L-carnitine (乙醯肉鹼)比亞女試下, 睇下食左, 亞女個專注力會唔會好d.

Elikinma

pattsui11@yahoo:

以我兒為例(現為5歲A仔), 食物敏感的確對他有明顯的影响性。

起初試Biomedical Treatment, 知道要GFCF, 后來正式驗IgG, 兒子對很多食物也有敏感,尤其以奶類、蛋、牛肉、豬肉、蜜糖、杏仁、米、麥、檸、橙等等反應較大。自此我努力看各種參考書,請教Dr KU、政府及私人營養師和医生的意見, 雖然各有論點, 但我仍盡力為兒子進行Diet by Rotation, 避免吃highly reactive 的食物.....想不到兒子的進步比昔日只吃"乙+蘋"和做3T來得更顯著。效果真叫人高興。(例如他以前吃了奶類飲品, 他會尖叫尖叫, 感統失調e.g.會狂跳躍撞sofa, 半夜起床至天亮,不停亂扔東西等,而且此類情緒的敏感反應未必是即時性,可能在幾小時后或數天后才發作, 嚴重的要2、3個星期才能平伏下來。)

我同意有很多種自閉症的治療方法, 有時可要互相配合才有更佳效果。

btw 小兒吃"乙+蘋"和做3T差不多2年了。現開始學游泳和Music Therapy, 他也十分喜歡。

pattsui11@yahoo

多謝你的回覆。
「米」也在敏感之列嗎？
你如何處理食物敏感的問題？

原帖由 Elikinma 於 10-9-28 00:26 發表
pattsui11@yahoo:

以我兒為例(現為5歲A仔), 食物敏感的確對他有明顯的影响性。

起初試Biomedical Treatment, 知道要GFCF, 后來正式驗IgG, 兒子對很多食物也有敏感,尤其以奶類、蛋、牛肉、豬肉、蜜糖、杏仁、米、麥 ...

Elikinma

pattsui11@yahoo:

Yes. Rice is allergy to my son. In order to implement GFCF diet, my son only drank rice milk or had congee with pork in his babyhood and I think he had over taken rice and pork at that period while his immune system reacted abnormally against the rice and pork. Besides, his diet was extremely imbalance and singularize.

After consulting the nutritionist, rotation of diet had been applied. ( rotate diets with less allergy food in order to diversify and have a balance diet. Also, digestion system (different enzyme)takes time to treat the food if you take the same food repeatly say four meals a day and carry on for years, you body cannot produce the same enzyme to process the same food within short time repeatly.

pattsui11@yahoo

多謝你這麼快回應，也佩服你的能耐。
請問你 1. 為何rice milk可以而rice唔得呢？
2. 他們有沒有告訴你敏感原因？例如：小孩子年紀小，腸道未有能力消化這些東西，長大些/10歲/可能會沒有問題……

我其實很討厭不准我吃什麼的方式，因為給我很大的吸引力去吃那些不可吃的東西；當小朋友漸漸長大，叫他「戒口」是很難的，所以我想請一位營養師朋友為我們中國A氏家族寫一本365日食譜和小食譜，讓我們可以過少些煩惱的生活。你的回覆提供我這想法的出路啊。

原帖由 Elikinma 於 10-9-28 14:49 發表
pattsui11@yahoo:

Yes. Rice is allergy to my son. In order to implement GFCF diet, my son only drank rice milk or had congee with pork in his babyhood and I think he had over taken rice and pork at th ...

Elikinma

Great! I will surely buy the book.

No, rice milk was not ok for my son but I did not know he was allergy with rice as I never tried the blood test (for food allergy) at that time. Since the DAN doctor recommended GFCF diet, rice milk or soy milk is the alternative food for little kids and that's why I gave rice milk to my son. Two years later, after the blood test, I knew my son was allergy with rice so I changed to feed him corn, wheat, rice and other substitutes by rotation and aviod most reactive allergy food.  

I remember he was very difficult to take care at his babyhood. I was so frustrated about his screamings, unreasonable cryings, serious stimulation seeking and hot temper.

His is getting much better now and he is less allergy with rice which reflected from his blood test recently so I normally give him rice at lunch and dinner.

丞丞BB

我比亞仔食左(乙醯肉鹼)同(蘋果提純)各3瓶,
發現沒咩效果,就斷左...
覺得都係實際d好,
不如留多d$比個仔做訓練仲好...
(純屬個人意見)

myson727

"例如他以前吃了奶類飲品, 他會尖叫尖叫, 感統失調e.g.會狂跳躍撞sofa, 半夜起床至天亮,不停亂扔東西等,而且此類情緒的敏感反應未必是即時性,可能在幾小時后或數天后才發作, 嚴重的要2、3個星期才能平伏下來。"

醫生講過："有腸漏的A仔，例如我個仔，吃含牛奶或小麥的食物，等如食左丸仔(迷幻樂)，會出現以上情況。

原帖由 Elikinma 於 10-9-28 00:26 發表
pattsui11@yahoo:

以我兒為例(現為5歲A仔), 食物敏感的確對他有明顯的影响性。

起初試Biomedical Treatment, 知道要GFCF, 后來正式驗IgG, 兒子對很多食物也有敏感,尤其以奶類、蛋、牛肉、豬肉、蜜糖、杏仁、米、麥 ...

[ 本帖最後由 myson727 於 10-9-30 11:17 編輯 ]

myson727

我都幫個仔驗左IgG，除左要GFCF外，還要戎雞蛋及花生。

原帖由 Elikinma 於 10-9-28 00:26 發表
pattsui11@yahoo:

以我兒為例(現為5歲A仔), 食物敏感的確對他有明顯的影响性。

起初試Biomedical Treatment, 知道要GFCF, 后來正式驗IgG, 兒子對很多食物也有敏感,尤其以奶類、蛋、牛肉、豬肉、蜜糖、杏仁、米、麥 ...