@querida1314 Thanks for the question. She had myelomeningocele at L3-4 when she was born. The doctor said that she also had syringomyelia at L2 after he examined her spinal cord. That is why she has difficulty to keep her bottom up, I guess...
@shumailaaminbwp Thanks for your kind comment again! It must be very difficult to keep her bottom not falling down to the floor, but she is trying little by little.
Long time no new video upload ?
shumailaaminbwp 4 months ago
hi which lesion level does she have?
querida1314 7 months ago
@querida1314 Thanks for the question. She had myelomeningocele at L3-4 when she was born. The doctor said that she also had syringomyelia at L2 after he examined her spinal cord. That is why she has difficulty to keep her bottom up, I guess...
ayanogontaro 7 months ago
plz upload more new videoes thaks
shumailaaminbwp 1 year ago
はじめまして☆
私の娘も二分脊椎症で、現在11ヶ月です。
背骨の一番下が開いていたので、足は動くのですが、まだ歩けるか分りません。(現在ハイハイより先につかまり立ちしそうな勢いです・・・)
予想では、装具をつけての訓練が必要かな？と思っています。
実際の訓練がどんなものなのか、拝見できてとても参考になりました。
ありがとうございました。
anyako1980 1 year ago
@anyako1980 コメントありがとうございます! 日本の二分脊椎っ子の訓練動画は少ないなあと思い、YouTubeに訓練の様子を載せたので、ご参考になって良かったです。
お嬢さんは、S1か、S2レベルですか？足が動くのなら、歩ける可能性高いですよね！
知人のお子さんでS1-2レベルの開放性の子は、短下肢装具つけて歩ける子が多いです。11ヶ月ということで、訓練（PT）も、これから始めるのかな？ 焦らず、少しずつ頑張って下さいね～
なお、私、ブログもやっています。最近更新できてませんが、これまでの記録なので、ご参考にして下さい。
ayanogontaro 1 year ago
Comment removed
shumailaaminbwp 1 year ago
@shumailaaminbwp Thanks for your kind comment again! It must be very difficult to keep her bottom not falling down to the floor, but she is trying little by little.
ayanogontaro 1 year ago