w****6
发帖数: 116 | 1 我的一位亲戚在国内有一个脑瘫女儿. 他们普通家庭, 就一个孩子, 尽其所能为孩子看
病. 昨天,接到他们的一个Email如下. 我没有经验, 不知如何回复. 本人医盲一个, 中
文病情都看的稀里糊涂, 更别说用英文去咨询医生. 想在这咨询一下好心人, 我如何可
以帮助他们. 在此先多谢了.
---------------------------
有件事情需要请你们帮忙，XX已治疗了3年，我们在上海的大医院都去看过，现在医
生给的治疗方案都不同，我想把XX的病情跟你说说，麻烦XX能帮忙咨询一下你们那里的
医生，给我们一些正确的方法。
1、基本资料：
XX 女 2008年12月生 现3岁8个月 2009年7月诊断为脑瘫，CT显示左脑
室有钙化点，临床诊断右偏瘫。（右侧肢体肌张力高）
2、治疗经历：
持续3年的康复训练，主要是右手右脚的功能训练，使用过营养神经的药物，右脚穿戴
矫正鞋（塑料支具）
3、现在状况：
能走路，（步态不稳易摔），双下肢不等长，右脚短于左脚1.5厘米，右脚外翻，双脚
扁平足，走路时右脚跟不着地，不主动用右手，精细动作差。
4、上海医生的治疗方法：
（1）做跟腱延长手术，解决踮脚的问题；
（2）持续康复，穿矫正鞋。
5、需要询问的问题：
（1）根据XX现在的病情，美国的治疗方法什么时间做跟腱延长手术最好，术后会不会
复发，术后如何康复。
（2）在美国寻求科学的矫正鞋，我们提供什么资料可以购买到矫正鞋。
（3）有什们方法可以治疗XX的病。 | l*h
发帖数: 4124 | 2 cerebral palsy is a term too broad. there should be a diagnosis based on the
cause. it could be SAH occurring in the delivery process, cerebral
dysplasia, infection and many many reasons.
the calcification in the ventricle indicates it is more likely it was caused
by a trauma/hemorrhage in her early life. paralysis could have been avoided
if detected and treated early.
【在 w****6 的大作中提到】
: 我的一位亲戚在国内有一个脑瘫女儿. 他们普通家庭, 就一个孩子, 尽其所能为孩子看
: 病. 昨天,接到他们的一个Email如下. 我没有经验, 不知如何回复. 本人医盲一个, 中
: 文病情都看的稀里糊涂, 更别说用英文去咨询医生. 想在这咨询一下好心人, 我如何可
: 以帮助他们. 在此先多谢了.
: ---------------------------
: 有件事情需要请你们帮忙，XX已治疗了3年，我们在上海的大医院都去看过，现在医
: 生给的治疗方案都不同，我想把XX的病情跟你说说，麻烦XX能帮忙咨询一下你们那里的
: 医生，给我们一些正确的方法。
: 1、基本资料：
: XX 女 2008年12月生 现3岁8个月 2009年7月诊断为脑瘫，CT显示左脑
| w****6
发帖数: 116 | 3 Thanks so much for taking your time to reply to me. Actually when the Mom
was pregnant, baby's brain was found to have abnormal symptoms through
sonograph at her late pregnancy. If I remember correctly, it's either the
baby's brain size not right or it shows some liquid in the baby's brain.
The mom decided to keep the baby and the baby was born with issues. They
started treatments right away.
Right now, they are more concerned about seeking the best treatments for the
girl because they can have only one kid due to the one child policy. | l*h
发帖数: 4124 | 4 possibly it's a fetal subarachnoid hemorrhage in the last trimester.
the treatment is very complex. the patient should be taken care of by a
multidisciplinary team including pediatrician, physiatrist (PM&R), physical
therapist, language pathologist, child neurologist, neurosurgeon and
orthopedic surgeon, sometimes also other specialists such as a
reconstructive plastic surgeon.
treatment includes rehabilitation training (motor function, language and etc
.), surgery, use of prosthetics etc. the type of rehabilitation training
needed can be relatively easily decided by a physiatrist, but the decision
about surgery is more difficult. it may include procedures to deal with the
following:
1. hypertonia/spasticity. this may be treated by botox injection or
superselective rhizotomy, depending on the specific situation. Rick Abbott (
Einstein/Montefiore) is one of the best known experts on surgical management
of spasticity.
2. extremity deformity. this may involve reconstruction of certain
structures done by an orthopedic surgeon and/or a reconstructive plastic
surgeon.
3. a lot more smaller things.
these surgical decisions are usually made in a group, that is, a group of
surgeons sit down with the family to discuss options (what can be done, when
can they be done etc.) and make a decision.
prosthetics may also be needed as a part of the treatment.
the
【在 w****6 的大作中提到】
: Thanks so much for taking your time to reply to me. Actually when the Mom
: was pregnant, baby's brain was found to have abnormal symptoms through
: sonograph at her late pregnancy. If I remember correctly, it's either the
: baby's brain size not right or it shows some liquid in the baby's brain.
: The mom decided to keep the baby and the baby was born with issues. They
: started treatments right away.
: Right now, they are more concerned about seeking the best treatments for the
: girl because they can have only one kid due to the one child policy.
| l*h
发帖数: 4124 | 5 I want to add that the treatment of spasticity should be done before
reconstruction of bone/joint/muscles. | w****6
发帖数: 116 | 6 LMH, Thanks a Million for your very generous and very informative reply! I
will pass all this along to the girl's family. |
|
