坚强的贝贝的博客

具体也帮不上什么忙,再汇点款支持贝爸贝妈~~~

贝贝要早日康复哦~~~

刚通过网上工商银行给贝贝汇去了150元!~虽然不多也是我的心意

不要放弃

一切困难都只是暂时的

贝贝会好的。加油

祝他好运

http://www.guugaa.com/main/home/main.php.

希望你能在海外中国儿童救助基金会www.osccf.org注册, 这样我们在海外的人也能捐款.

Homocystinuria

* Overview

* Symptoms

* Treatment

* Prevention

Alternative Names:

Cystathionine beta synthase deficiency

Treatment:

There is no specific cure for homocystinuria. However, many people respond to high doses of vitamin B-6 (also known as pyridoxine). Slightly less than half of patients respond to this treatment; those that do respond need supplemental vitamin B-6 for the rest of their lives. Those who do not respond require a low methionine diet, and most will need treatment with trimethylglycine (a medication also known as betaine).

Neither a low-methionine diet nor medication will improve existing mental retardation. Medication and diet should be closely supervised by a physician with experience treating homocystinuria.

A normal dose folic acid supplement and occasionally added cysteine (an amino acid) in the diet is helpful.

Expectations (prognosis):

Although no specific cure exists for homocystinuria, approximately half of the affected people can be helped by vitamin B-6 therapy.

If the diagnosis is made while a patient is young, a low methionine diet started promptly and strictly adhered to can prevent some mental retardation and other complications of the disease. For this reason, some states screen for homocystinuria in all newborns.

Unfortunately, patients with persistent increases in blood homocysteine levels are at increased risk for blood clots, which can cause significant medical problems and shorten life span.

Complications:

Most serious complications result from blood clots, and these episodes can be life threatening. Dislocated lenses of the eyes can severely impair vision and lens replacement surgery should be considered. Mental retardation is a serious consequence of the disease which can be moderated if diagnosed early.

Homocystinuria

* Overview

* Symptoms

* Treatment

* Prevention

Alternative Names:

Cystathionine beta synthase deficiency

Treatment:

There is no specific cure for homocystinuria. However, many people respond to high doses of vitamin B-6 (also known as pyridoxine). Slightly less than half of patients respond to this treatment; those that do respond need supplemental vitamin B-6 for the rest of their lives. Those who do not respond require a low methionine diet, and most will need treatment with trimethylglycine (a medication also known as betaine).

Neither a low-methionine diet nor medication will improve existing mental retardation. Medication and diet should be closely supervised by a physician with experience treating homocystinuria.

A normal dose folic acid supplement and occasionally added cysteine (an amino acid) in the diet is helpful.

Expectations (prognosis):

Although no specific cure exists for homocystinuria, approximately half of the affected people can be helped by vitamin B-6 therapy.

If the diagnosis is made while a patient is young, a low methionine diet started promptly and strictly adhered to can prevent some mental retardation and other complications of the disease. For this reason, some states screen for homocystinuria in all newborns.

Unfortunately, patients with persistent increases in blood homocysteine levels are at increased risk for blood clots, which can cause significant medical problems and shorten life span.

Complications:

Most serious complications result from blood clots, and these episodes can be life threatening. Dislocated lenses of the eyes can severely impair vision and lens replacement surgery should be considered. Mental retardation is a serious consequence of the disease which can be moderated if diagnosed early.

希望你家宝宝尽快康复，又能和你们一起欢笑，玩耍。

好人一生平安！

贝贝加油。

贝爸贝妈要坚强哦！

愿小贝贝早日康复！！！

我刚刚把关于贝贝求助的贴子，

转到广州妈妈网上去了！

http://www.gzmama.com/viewthread.php?tid=444641&page=1&extra=page%3D1

但愿能有更多的爱心妈妈来帮贝贝一把！

2月4日又往贝爸北京工行的帐户上汇入200元，

是给贝贝春节的压岁钱，钱不多一点心意，

希望年年给，直到贝贝健康长大，

能工作挣钱孝敬阿姨，一定会的，期待中！

贝贝一定要快点好起来呀！

张玉敏：凡经北京筛查具有北京市户口的PKU患儿，可享受免费治疗奶粉到六岁。

真的是才知道生病、治病还有户口的限制，无语......

http://bbs.yaolan.com/shequ/bbs/Articles/board24/2008-2/6853048A_1.html

http://bbs.yaolan.com/shequ/bbs/Articles/board40/2008-1/6850576A_1.html

好心的摇篮网版主还进行了转贴

http://bbs.yaolan.com/shequ/bbs/Articles/board24/2008-2/6855238A_1.html

得到摇篮网上热心妈妈的爱心捐赠，

北京的爱心妈妈“走阶梯的人”

愿意暂为代理贝贝的捐款事项，

相信不久就会有些款项转到你们手中！

我所知道得对于针对中国孩子救助的就这一个网站：海外中国儿童救助基金会

http://www.osccf.org/about.aspx?lan=cn

其实当时我想帮他申请，申请流程的网页：http://www.osccf.org/application.aspx?lan=cn

但是申请要求申请救助儿童的所有申请资料由其法定监护人负责填报，网址在：http://www.99et.org/qzsq.asp 里面需要家庭地址，患者病理和附言，另外还需要下在表格到当地的红十字会盖章，然后邮寄到中国红十字会，邮寄地址：北京市东城区朝阳门内南小街干面胡同53号 邮编：100010，然后通知这个基金会。

主要是需要到当地的红十字会盖章这一项，其他的如果需要我帮忙，我很高兴，以后联系就叫我世泽妈吧，我也有孩子，也真得想能帮上忙。

另外这个海外中国儿童救助基金会，他们可能会帮忙联系美国这边的医院（因为我看这个基金会里很多孩子都联系了美国的顶尖好医院，递交了申请），这样希望会大些。

我是一个2岁多点孩子的母亲，可怜的贝贝，希望你快点好起来，勇敢面对每一天，相信每插一次点滴每做一次理疗，你就更坚强一分。

勇敢的孩子，在重庆有位陌生的阿姨会为你祝福的。祝你：平安、健康！

祝福贝贝早日恢复！健康快乐！

豪妈刚买了房子没有太大的能力只能捐个几百，本想今天就汇，但公司的会计在建行没法汇，等豪妈过两天去市里再汇。也希望有经济能力的多帮点小贝贝！

祝贝08好运！贝爸贝妈要坚强啊！！！！

你是个坚强的宝贝，一定会好起来的！

我们一定会帮你的！

很心疼～～

决定明天去给贝爸汇款～～

愿贝贝早日康复～～

给贝爸发短信没有回复，所以在这里留言，希望贝爸及时去查收。

昨天下午晚些时候给贝爸在北京的农行卡上汇去

1000.10，真诚祝福贝贝勇敢的挺过来。

大家和贝爸贝妈一起努力。

贝爸贝妈不要担心，一切都会好起来的！

大家一定会帮贝贝的！

给你们汇款了一点点。

祝福你们，祝福贝贝早日康复！！！

祝你早日战胜病魔！早日康复！！！！

贝爸贝妈一定要坚强,大家都一起来帮帮这一家人吧!真的好心痛...天天都在关注着...希望奇迹早点出现....祝福中...

贝爸刚才发来短信委托我在网上帮他们公布三点信息：

1。贝爸的QQ号：249812342被盗了，敬请各位关心贝贝的朋友们如在收到相关消息时千万要小心谨慎！

2。杨教授已明确告诉贝爸他们，贝贝最好留京就诊。他们将按杨教授的建议春节留在北京！

3。有关小贝贝的好消息！贝贝这两天都没怎么发烧了，特别是今天一次都没有烧！

贝爸特别把Q号被盗的事情先提出来，就是希望所有关心，爱护，支持小贝贝的朋友们不会因此受到蒙骗和损失！

也正是因为有了所有关心和支持小贝贝的朋友们的爱心援助，以及医生的精心治疗，小贝贝的病情正朝着我们希望的方向在好转。我们可爱的小贝贝没有放弃，坚强的贝爸贝妈没有放弃，我们大家也一定不能放弃啊！

育网是个温暖的大家庭，在这个大家庭里大家都是相亲相爱，互帮互助的！

现在你们一家也是我们这个大家庭中的一份子了，大家都会帮助你们的，并且每天都会为我们的贝贝祈祷，贝贝一定是个坚强的宝宝，我们都会为你们祈祷的，另外已经陆陆续续有很多的妈妈们表示要汇款给贝贝了，虽然大家认为是杯水车薪，但是我们相信贝贝一定能够渡过这次难关的！

帮您宣传下

为贝贝祈祷

你好！谢谢你的帮助！贝贝所得的这种病验血是验不出来的，在他出生前和之后我们在妇幼和各医院该查的都查过了，所有的检查结果显示他没有任何问题，但那一家的小孩子出生后会查尿样呢？都没有吧！只有检查尿样或在娘胎里时查氧水才能查出来！

美香姐姐一定会帮贝贝的!!!!

多和大家交流交流，那里有很多热情的朋友会帮你解决遇到的所有问题的。