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苦尽甘来---世界上最好的DAN!医生:儿子生物疗法记录

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2881#
发表于 2011-1-11 00:11:38 | 只看该作者

re:6天$700全包(机票+吃住行)。要知道...

6天$700全包(机票+吃住行)。要知道是从我们底特律到CANCUN,去的时候在Florida转机,回来的时候直飞。据说吃得也很不错,当然可能赶不上Cruise.

但是就是不能自己选时间。我邻居是圣诞节前的淡季去的。
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2882#
 楼主| 发表于 2011-1-11 00:28:16 | 只看该作者

re:[QUOTE][b]下面引用由[u]柴火...

下面引用由柴火发表的内容:

6天$700全包(机票+吃住行)。要知道是从我们底特律到CANCUN,去的时候在Florida转机,回来的时候直飞。据说吃得也很不错,当然可能赶不上Cruise.

但是就是不能自己选时间。我邻居...

噢,我恰巧在第二家度假村遇到一家中国人,他们是5天4夜来回底特律直飞,全包(1月1号去的),错过了黄金周,每人$1000。
所以如果要在黄金周去,价位会高些。

我妈妈他们定了去牙买加,全包(包括机票),4月去一周,一人$700。还可以。
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2883#
发表于 2011-1-11 00:46:39 | 只看该作者

re:不光小K幸福,连作小K妈的父母也那么幸福...

不光小K幸福,连作小K妈的父母也那么幸福!都能到处旅游!哪里像俺爹娘,整天圈在家里,成天围着小火苗转呢。

俺们这里不像你们那些一线城市,旅游的deal特别多。关键是机票。一般俺如果看见某些deal,都是按大城市起飞算。但如果从俺们这里飞,机票一下子就把价格加上去了。
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2884#
发表于 2011-1-11 01:11:03 | 只看该作者

re:照片真美, 有机会一定要去看看。 旅游真...

照片真美, 有机会一定要去看看。 旅游真的能让人心情大好的, K妈K爸K王子真幸福!
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2885#
发表于 2011-1-11 15:13:20 | 只看该作者
提示: 作者被禁止或删除 内容自动屏蔽
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2886#
发表于 2011-1-12 21:47:06 | 只看该作者

re:小K妈,旅行愉快吧?呵呵,来要东西了,如...

小K妈,旅行愉快吧?呵呵,来要东西了,如果方便的话的《大脑饥饿的孩子S》和《自闭症的生物疗法》发给我,谢谢。我的邮箱:cjx924@163.com
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2887#
 楼主| 发表于 2011-1-13 11:09:46 | 只看该作者

re:[QUOTE][b]下面引用由[u]小虾...

下面引用由小虾发表的内容:

小K妈,旅行愉快吧?呵呵,来要东西了,如果方便的话的《大脑饥饿的孩子S》和《自闭症的生物疗法》发给我,谢谢。我的邮箱:cjx924@163.com

已发!
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2888#
发表于 2011-1-13 17:52:11 | 只看该作者

re:小K妈,文件收到谢谢!还是中文版的,谢谢...

小K妈,文件收到谢谢!还是中文版的,谢谢。准备好好看看。请问下,在调理肠胃和睡眠之前我是否可以先加COQ-10?因为儿子的肌张力很低。谢谢。
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2889#
发表于 2011-1-13 22:14:06 | 只看该作者

re:[QUOTE][B]下面引用由[U]kw...

下面引用由[U]kwenma2[/U]发表的内容:


下载信息   
图片点击可在新窗口打开查看点击浏览该文件:dailyrecord4.doc

  

这是K爸给小K设计的每天情况补充剂,表现的表格,我们用了4年了。终于上传成功!希望对大...

K妈,想拣现成的来用,但好像没法下载啊?我自己弄了一个感觉不太好用,刚好看到这个,很高兴,可以拿现成的。有没有可能发到邮箱里?谢谢。cjx924@163.com
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2890#
 楼主| 发表于 2011-1-14 00:37:25 | 只看该作者

re:[QUOTE][b]下面引用由[u]小虾...

下面引用由小虾发表的内容:

小K妈,文件收到谢谢!还是中文版的,谢谢。准备好好看看。请问下,在调理肠胃和睡眠之前我是否可以先加COQ-10?因为儿子的肌张力很低。谢谢。

可以!
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2891#
 楼主| 发表于 2011-1-14 00:45:21 | 只看该作者

re:[QUOTE][b]下面引用由[u]kw...

下面引用由kwenma2发表的内容:


下载信息  
图片点击可在新窗口打开查看点击浏览该文件:dailyrecord4.doc



这是K爸给小K设计的每天情况补充剂,表现的表格,我们用了4年了。终于上传成功!希望对大...

由于找我要的人多,而我先前在其他地方贴了的,你们可以去下载:
http://xkautism.com/bbs/dispbbs.asp?boardid=17&Id=2283
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2892#
 楼主| 发表于 2011-1-14 04:12:57 | 只看该作者

re:再谈 ---[b] 低草酸盐饮食疗法[/...

再谈 --- 低草酸盐饮食疗法

经BMOM同意,我可以用这个例子来说明一下低草酸盐饮食。

大约半年前,我贴过关于低草酸盐饮食疗法。当时是因为BMOM的事情让我贴出来的。跟BMOM再次在网上相会是在去年夏天,记得她在秋爸爸的地里问秋爸爸贝贝用了利他林后对情绪方面的控制如何?当时我不知道她就是4年前我电话过的网友,于是我悄她说:“解决情绪问题不一定首先考虑利他林等精神方面的药物,其实一些基本的补充剂可以先考虑。”

于是我们两个在悄悄话里开始了聊孩子的情况。BMOM做生物疗法几年了,无麦奶无糖的饮食疗法做得很好,但是孩子情绪还是很大。我发现她孩子的饮食可能有问题,于是叫她给了我清单。结果发现孩子吃的东西里面含草酸盐的食物较多。于是我们开始了低草酸盐饮食以及用一些益生菌(VSL#3牌子)和补充剂来处理。过了一段时间她说她孩子的情绪得到较大的改善,她非常欣喜!

所以我想,这里把这个事情谈一下,引起大家的重视---禁食重要,不同的禁食方法对不同的孩子有不同的疗效。低草酸盐禁食会改善一些酵母菌引起的类似的问题(比如行为问题,情绪问题),还有尿频(遗尿)等。刚好BMOM贴了SUSAN OWENS的关于低草酸盐饮食的对话,我就把它放在下面,希望对大家有用。

这里说的低草酸盐饮食疗法比ABA管用,是针对B的个体情况而言,先申明,避免口水仗。

以下是引用BMom在2011/1/12 上午 08:56:08的发言:
======================================================================
低草酸饮食对B的情绪和行为帮助较大. 比ABA管用. 多谢Kwen妈妈指点迷津.

Biochat with Susan Owens

> Q: Can you tell us what oxalates are, and the basics
> of the diet?
>
> A: Oxalates are two carbons joined together with 4
> oxygens. It's a structure similar to sulfur. There are
> a lot of problems with sulfate chemistry in autism, so
> it's interesting that the oxalate structure is so
> similar. Dr. Rimland did some studies (16-18) that
> showed B6 was affected in autism. B6 is key for the
> sulfur chemistry, and for oxalates.
> When you have inflamed gut, Crohn's for example, very
> few oxalates are absorbed. So since autistic kids
> often have inflamed gut, it made sense to have a
> low-oxalate diet. We did a pilot study with 7 kids.
> All 7 were high in oxalates, and started the diet.
> They had problems with frequent urination, GI pain,
> etc. within a couple hours of eating. They had changes
> in behavior following eating. Things started changing
> with the diet. A lot of the things we've been calling
> yeasty behaviors go away with a low-oxalate diet. A
> lot of these kids had trouble taking DMG and TMG,
> glycine in general. We saw problems with
> constipation/diarrhea in these kids before the diet,
> even after being treated by GI docs. A lot of these
> children had trouble when introducing nuts, legumes,
> soy. A lot of these kids craved high-oxalate foods.
>
> Q: What foods are high in oxalates?
>
> A: Nuts, legumes, green leafy vegetables, spinach,
> chard, black raspberry, soy, pecans, refried beans,
> almond, beet, okra, sweet potatoes, chocolate, cocoa,
> a lot of different teas, black current, dried fig,
> canned fruit salad, concord grapes, rubarb, tamarillo,
> tapioca are all extremely high in oxalates. If you
> google `oxalate contents of food' you should find all
> the details of high-oxalate and medium-oxalate foods.
> It makes sense to try low-oxalate diet for at least a
> week before moving to medium-oxalates.
>
> Q: My son only eats PB&J, sugary juice, pretzels,
> milk, and chocolate. I have tried to limit his diet,
> but he refuses to eat longer than I can hold out. Any
> ideas on how to get him off this diet without
> starving?
>
> A: Some of the food preferences of these kids are
> changing on the diet. Rice/corn caused one child to
> break out – now that she's on a low-oxalate diet,
> those same foods aren't making her break out anymore.
> Chocolate and peanut butter are high in oxalates,
> jelly might be too. Milk is generally ok, but soy milk
> is extremely high in oxalate.
> Oxalates are very easily produced by sugar. If you eat
> a lot of sugar, it depresses thiamine chemistry.
> Enzymes then turn things into oxalates. So don't eat a
> lot of sugar.
>
> Q: My son is SCD legal, but still does not have a
> healthy appetite. Do you have any advice on how I can
> increase his appetite?
>
> A: Is he trying a low-oxalate diet yet? (no, just scd,
> no juice, lots of proteins). There are children that
> are eating an awful lot of food, and not putting on
> weight, and they act starved all the time. When on a
> low-oxalate diet, they stopped acting starved, gained
> weight and height. I went on the low-oxalate diet
> myself a few months ago. I found that foods taste
> better now. Oxalates deplete glutathione in a big way.
> Oxalates may be changing the trafficking of zinc.
> Oxalates and inflammation seem to go hand in hand,
> more research needs to be done on oxalates and
> inflammation. Oxalates induce oxidative stress and
> reduce glutathione, could possibly affect TH1 to TH2
> shift.
>
> Q: Hi Susan, thanks for taking my question. Do you
> recommend doing a low oxalate diet with a gfcf diet?
> What is your web site?
>
> A: I think when you start the diet, it's a good idea
> to keep in place what you are already doing, and see
> if getting off the oxalates changes your sensitivity
> to certain things. Some folks who couldn't tolerate
> rice or corn can now tolerate. Another person has
> reintroduced gluten and casein, and is doing well.
> You can sign up to the yahoo group
> Trying_Low_Oxalates. You can sign up as "no email" and
> not be overwhelmed by the mail.
>
>
> Q: Would you discuss B vitamins and oxalate
> chemistry...We are SCD but I have been reading LOD
> yahoo board and caught bits and pieces of discussion
> regarding thiamine and biotin. I am interested
> because I am unable to get my son on B vitamins
> without alot of hyperactivity.
>
> A: The rules about intolerances to different
> supplements are changing. Zinc is depleted with
> oxalate. A lot of kids have been on very high zinc.
> Now they're reducing their zinc on the low-oxalate
> diet. The parents trying this diet move low and slow
> (low dose, go slow with changes).
>
> Q: Might the oxalate issue be more important than GFCF
> issues for some kids? Do kids who respond to GFCF
> tend to be the same ones who respond to this diet? Are
> oxalates related to metals at all?
>
> A: Gluten is metabolized towards oxalates. Casein is
> not a problem – but lactose might be, because that can
> be metabolized towards oxalates. Oxalates are related
> to metals – they are very potent in their chelating
> abilities. Not sure how this relates to DMSA or DMPS,
> but ALA seems to reduce oxalates. So while we might
> have thought it was a great chelator, perhaps the
> effect we're seeing is from the reduction of oxalates.
> ALA is anti-oxalate, noone has ever thought to test
> the other chelating agents to see if they are.
>
>
> Q: We've been LOD for about 1 month. I tried it
> because my son urinates constantly. However, I haven't
> adjusted supplements. Are there supplements that we
> should avoid? We are starting td-ALA soon.
>
> A: The ALA should help. There are quite a few
> supplements that are helpful. Taurine is anti-oxalate,
> give more taurine.
> Oxalates bind beta-alanine. If your son is urinating
> constantly, this diet might very well help.
>
> Q: Hi. My son had an allergic reaction after 12 weeks
> to the DMPS. We are now using DMSA. I am worried he
> may have reacted to the sulfur. DO you think the low
> oxalate diet could help him not react to sulfur?
>
> A: I do think there is a possibility that some of the
> kids with sulfur-sensitivity could be the oxalate
> kids. A few parents reported that on the diet they
> were seeing sulfur-sensitivity diminish. Children
> eating swiss chard and spinach every other day don't
> see the differences from day to day – it may be
> because their bodies have so many oxalates, they're
> not seeing the difference.
>
> Q: My daughter is taking custom amino acids after
> being tested through Metametrix. She was quite low in
> her profile across the board. Do you have experience
> with these types of products? I don't know if it is
> helping
>
> A: I've been looking at the reference ranges on
> urinary tests. The creatinine doesn't seem stable
> enough. Also the reference ranges are based on adults,
> and the kids doing these tests are 2 and 3. Write me
> off list.
>
> Q: What are some indicators that LOD might help a
> child...you have said problem with sulfur supplements,
> urinary issues, what else?
>
> A: Issues in speech (that's the area we see improve
> the quickest); a lot of yeasty behaviors; if you've
> been on a lot of antibiotics.
>
> Q: Can you tell us more about your work as a thinktank
> member? What is that like? How do the members get
> together to share ideas?
>
> A: It's been fabulous. There are a lot of totally
> dedicated people in the think tank. The doctors
> compare notes, compare success stories, listen to how
> other doctors solved problems for their patients, etc.
> We're getting past our growing pains, and really
> accomplishing a lot. The internet really helps, and
> the working relationship between doctors and parents.
>
> Q: I give my son 1 peeled pear and several peeled
> apples/ day - do you know if oxalate levels are lower
> without the peels? It seems like some lists are
> conflicting. Also, I've heard that food high in
> phosphate (such as peas i think) may also cause
> problem. What would indicate that?
> A: There may be issues with phosphate with some kids,
> I haven't looked at it very closely. Even different
> varieties of the same type of fruit/vegetable will
> have different oxalate content. Kiwi fruit has 100+
> varieties. The oxalates vary greatly between each
> variety. It may also vary depending on the soil it was
> grown in. Some foods are always high; others vary.
>
> Q: How long is it taking for kids to respond to the
> diet? Are any kids reacting badly to the diet? What
> is the difference between oxalates and "oxidants"?
>
> A: Astonishingly some kids show improvements in just a
> day or two. Occasionally a child will start and have
> worse behavior. If you've been really high oxalate and
> you remove them, oxalates get trafficked to the gut
> and cause really high oxalates there. We've been
> experiencing with calcium citrate and magnesium
> citrate, which are both anti-oxalate. The calcium is
> important in the gut – if there is calcium in the gut,
> the oxalates won't be reabsorbed in the body, they'll
> stay in the stool.
> Oxalates are oxidants. And oxidant creates oxidative
> stress. Molecules that are not supposed to be bound
> together get bound together during oxidative stress.
> Proteins work differently when under oxidative stress.
>
> Q: Do you know of any thing that may become an
> "enzyme" or "helper" for oxalates? Like Petizyde helps
> with cross contamination gluten...
> Also, what about IP6 - that helps break apart kidney
> stones???
>
> A: We have to rely on our bacteria – it breaks
> oxalates apart. There is a company trying to make a
> probiotic, but it is about a year out. The enzymes
> available are not what we need to break oxalates.
> Acidophilus is an oxalate eating species, but if you
> get too much oxalate it kills off acidophilus.
> I'm not familiar with IP6.
>
> Q: I have heard the NAC is helpful in detoxing poisons
> such as mercury (not a chelator but aids in ridding
> the body of these chemicals) My daughters doctor said
> there are too many negative side effects but I
> recently realized that she takes NAC 100mg a day in
> her D-Hist supplement for allergies. She seems fine
> should I look into giving her more NAC since it seems
> that she is tolerating it with the D-Hist? Also is LDN
> something that is helpful? My daughter is 6 and
> non-verbal autistic.
>
> A: We have had folks doing both LDN and low-oxalate
> diet. One of our parents had such good results on
> low-oxalate that she stopped LDN. It may be they're
> working on a similar system, it's too early to know.
> The one consistent thing in autism is that sulfur is
> below the reference range. We need to explore the role
> of oxalates.
>
> Q: On the diet, is the ultimate goal to do LO foods
> and then you may have a certain percentage of MO
> foods that child tolerates and never high oxalate?
>
> A: We're trying to let the children tell us. We know
> oxalates are a problem, but from child to child there
> are different levels of absorption and other differing
> factors. We do know that the kids that stick to
> low-oxalate foods are doing very well.
>
> Q: Do you know if whey is high or low oxalate and if
> it can help with oxalates? Also, you mentioned using
> calcium and magnesium citrate at first. Should the
> child get regular doses or megadoses?
>
> A: We're learning about the cal and mag citrate. Start
> low and slow. There was one child that started having
> worse seizures after the cal citrate, but overall she
> had less seizures on the low-oxalate diet. It seems
> the kids do better to be on the diet several weeks,
> then start the cal citrate. If you start the
> low-oxalate diet and see behavior issues, you might
> want to try low dose cal citrate.
>
> Q: You mentioned issues with speech. Have you had
> non-verbal children begin talking on the diet?
>
> A: We haven't had someone non-verbal try it yet. We
> had a child who could speak a few words, and a week
> into the diet was talking in 4-word sentences and
> making good eye contact.
>
> Q: Can you talk a little more about children who have
> problem digesting fats and oxalates?
>
> A: The idea of taking calcium in the meal is to bind
> the oxalate so it's not absorbed.
> The bound calcium in spinach is not a problem, it's
> the free oxalate that is a problem so take calcium
> with it. Even better, leave out the foods with high
> oxalate altogether.
>
> Q: 1) what might help with dyspraxia and motor
> planning? 2) how are people deciding what might be low
> oxalate if there isn't a test on that food?
>
> A: We have a scientist willing to test foods that are
> common in the autism community. You can list the food
> that you want tested on the yahoo group website, and
> he will test.
> We have had children improving in motor skills. We
> totally did not expect that gain. One of the children
> went to see his grandparents, and they were astonished
> at his motor skill improvements, and all his
> improvements.
> Scientists have shown there are oxalates in the brain.
> There are probably certain areas of the brain that are
> more vulnerable. The autistic kids might have areas of
> the brain influenced by oxalates.
> If your oxalates are higher outside the cell, you
> might be dragging sulfates out of the cell. These are
> the areas you would expect to see more functional
> problems.
> Hippocampus and cerebellum are two areas that are
> problem areas in autism…and have high oxalates.
>
> Q: Are pumpkin seeds particularly good for oxalates?
> Are oxalates related to autoimmune?
>
> A: Most seeds are a problem with high oxalate, but for
> some reason pumpkin seeds are not. Some of our moms
> grind up pumpkin seeds to make flour.
> Autoimmunity relates to the body making antibodies to
> bind things that the body will get rid of. If you have
> an injury, the body makes antibodies to do a clean up.
> In autoimmunity, something keeps the reaction going,
> the clean up keeps going.
> It could be that a lot of these processes could be cut
> back if we reduce oxalates.
>
> Q: Would a GRADUAL transfer to LOD possibly avoid the
> potential release of oxalates from the tissues in to
> the gut that causes initial worsening of symptoms.
>
> A: I don't know, it's kind of a tradeoff. Like
> chelation, some folks go slower then others.
>
> Q: My son had a urinalysis which showed urine cloudy,
> crystals-present and _morph Ur 4+ is any of this
> significant-he's 8 yrs. old.
>
> A: It could be calcium oxalate. There are a lot of
> internet sites where you can look up, but calcium
> oxalate is one of the major ones. Certain crystals
> will dissolve certain substances added to them. If you
> refrigerate urine and it gets cloudy, it's probably
> crystallizing something.
>
> Q: Can you talk more about how the cerebellum is
> affected? My son has mild hyperplasia of the
> cerebellar vermis so I am interested
>
> A: The cerebellum is a modulator of info for the rest
> of the brain, a traffic cop. You can actually get by
> without one (a cerebellum), but if the one you have
> isn't working right, it can really mess you up.
> One of our best responders did really well for a
> month, then had a bad diaper and terrible behavior one
> day. Afterwards he said his words were stuck. Maybe
> the reason some of these kids aren't talking is not
> that they don't have language, they just can't get it
> out.
>
> Q: Susan, thank you so much for your work in this
> area. We think we're seeing the light at the end of
> the tunnel for GI pain in our daughter! Will this be
> a topic at the next DAN! ?
>
> A: The oxalates will be mentioned by Maureen McDonald,
> and Jacquelyn McCandless, but it will not be a feature
> this time at DAN! The first tests were in June, and
> the conferences are planned well in advance, so this
> is a little too new. I am going to do a session, there
> will be a room set aside to talk about issues that are
> not part of the main conf. I'll be in that room.
>
> Q: Have kids who were not able to tolerate TMG before
> the diet able to tolerate after?
>
> A: I don't know that we've had anybody that happened
> to, I don't recall anyone saying that. If excess
> glycine was causing a backup, that might not be
> addressed by the diet. Some kids have GI issues and
> inflammation; they are absorbing more oxalates from
> their diet. Some kids have weaknesses in pathways;
> they might be producing more oxalates. This will take
> a lot of sorting out.
> I'm not satisfied with current testing either, so we
> need to recruit scientists, laboratories. There is
> also work needed to characterize enzymes that were
> studied in the 50's and 60's. The research is so old,
> the studies need to be redone. This will take
> fundraising and serious organizational push.

       
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2893#
发表于 2011-1-14 05:23:36 | 只看该作者

re:deleted.

deleted.
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2894#
发表于 2011-1-14 09:24:29 | 只看该作者

re:小P妈妈所说的低盐饮食让我恍然大悟.我们...

小P妈妈所说的低盐饮食让我恍然大悟.我们的低草酸盐饮食还做得不彻底.明天开始低盐饮食! 谢谢小P妈妈.


下面引用由[U]zzl0207[/U]发表的内容:

除了严格的禁gluten,casein,sugar之外,低草酸盐饮食疗法对小P的帮助最大,这个草酸盐对小P简直就象天平那么灵敏!只要前一天吃的食物草酸盐含量,稍稍超出他身体能承受的“阈值”,那第二天第...

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2895#
发表于 2011-1-14 10:50:03 | 只看该作者

re:学习再学习!

学习再学习!
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2896#
发表于 2011-1-14 20:46:10 | 只看该作者

re:[QUOTE][B]下面引用由[U]小虾...

下面引用由[U]小虾[/U]发表的内容:

  
K妈,想拣现成的来用,但好像没法下载啊?我自己弄了一个感觉不太好用,刚好看到这个,很高兴,可以拿现成的。有没有可能发到邮箱里?谢谢。cjx924@163.com

谢谢K妈,表格已下载。很高兴,又找到了一个好去处,呵呵,寻到了很多好信息,谢谢。
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2897#
 楼主| 发表于 2011-1-14 23:20:36 | 只看该作者

re:[QUOTE][b]下面引用由[u]zz...

下面引用由zzl0207发表的内容:

除了严格的禁gluten,casein,sugar之外,低草酸盐饮食疗法对小P的帮助最大,这个草酸盐对小P简直就象天平那么灵敏!只要前一天吃的食物草酸盐含量,稍稍超出他身体能承受的“阈值”,那第二天第...


哈哈,讨论真好,又让BERTMOM受益了。[EM15]
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2898#
发表于 2011-1-14 23:26:40 | 只看该作者

re:下载了K妈的表格,比我自己的日志好用多了...

下载了K妈的表格,比我自己的日志好用多了,打算修改一下我的表格,多谢啦!
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2899#
发表于 2011-1-15 21:16:24 | 只看该作者

re:你的表格我不能下啊,发我看看吧,谢谢了。

你的表格我不能下啊,发我看看吧,谢谢了。
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2900#
 楼主| 发表于 2011-1-22 09:59:26 | 只看该作者

re:[QUOTE][b]下面引用由[u]适彼...

下面引用由适彼乐土发表的内容:

你的表格我不能下啊,发我看看吧,谢谢了。

童鞋,你的email呢?发我悄。
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