Category CFDとは (About CFD)
メモ程度に。
Just a note.
Leoは血中の葉酸値が正常なのに、髄液の葉酸値が正常の範囲内だか下限に近い。だからCFD(脳葉酸欠乏症)の可能性大と診断され、髄液の葉酸を補うLeucovorinを飲んでいたが効果なし。だから一週間前に飲むのをやめた。
やめても変化なし。
Leo's folate acid level in his blood is normal but close to the lowest range in the cerebrospinal fluid (CSF). This is the reason why he has cerebral folate deficiency (CFD) and was taking Leucovorin, which supplements the folate acid in CSF. But no signs of improvement so far, so we stopped the medication a week ago. Honestly no change since then.
だから、CFDであるかないか確かめるために、今日Leoの血を採った。
Thus, in order to make sure if he has CFD, he got his blood taken today.
FR抗体検査というみたい。
Is is for Folate Receptor (FR) antibody assay.
通常血液から髄液に葉酸は問題なく行く。しかしCFD患者はその葉酸レセプターを阻害する抗体をもっている。
Usually folate acid goes through blood-brain barrier without any problem. But CFD patients have antibody that prevents it.
今回はその抗体があるかないかの検査。
And this is the test to determine if he has FR antiboby.
あればCFD確定。
なければCFDではないことが確定。
If yes, he has CFD.
Otherwise, he is not CFD.
こういう検査があることは、NY在住の医療関係に携る大変親切な読者の方から教えてもらいました。大変ありがとうございました。SUNYではなく、アトランタにある提携Labに送られました。
A kind viewer of this blog, who works at a hospital lab in New York, told me about the test. Thank you very much for the information. His blood was not sent to SUNY but to a lab in Atlanta that has partnership with the hospital Leo goes to.
結果が出次第アップします。
I will update the results here.
CFDでないときはブログのタイトル変えないと…
I guess, if not CFD, I need to change the blog title...
そしてまた原因を探す毎日…
And that brings us back to the beginning of a long journey to seek the root cause of his symptoms...
Leo。
Leo.
ずっと痛い思いばかりさせてゴメンね…
So sorry to have given you a lot of pain to go through those tests...
今日も泣かずに採血に耐えてくれて…
You did bear the blood work without a single drop of tears...
胸が詰まります…
I hardly manage to see you doing that.
Just a note.
Leoは血中の葉酸値が正常なのに、髄液の葉酸値が正常の範囲内だか下限に近い。だからCFD(脳葉酸欠乏症)の可能性大と診断され、髄液の葉酸を補うLeucovorinを飲んでいたが効果なし。だから一週間前に飲むのをやめた。
やめても変化なし。
Leo's folate acid level in his blood is normal but close to the lowest range in the cerebrospinal fluid (CSF). This is the reason why he has cerebral folate deficiency (CFD) and was taking Leucovorin, which supplements the folate acid in CSF. But no signs of improvement so far, so we stopped the medication a week ago. Honestly no change since then.
だから、CFDであるかないか確かめるために、今日Leoの血を採った。
Thus, in order to make sure if he has CFD, he got his blood taken today.
FR抗体検査というみたい。
Is is for Folate Receptor (FR) antibody assay.
通常血液から髄液に葉酸は問題なく行く。しかしCFD患者はその葉酸レセプターを阻害する抗体をもっている。
Usually folate acid goes through blood-brain barrier without any problem. But CFD patients have antibody that prevents it.
今回はその抗体があるかないかの検査。
And this is the test to determine if he has FR antiboby.
あればCFD確定。
なければCFDではないことが確定。
If yes, he has CFD.
Otherwise, he is not CFD.
こういう検査があることは、NY在住の医療関係に携る大変親切な読者の方から教えてもらいました。大変ありがとうございました。SUNYではなく、アトランタにある提携Labに送られました。
A kind viewer of this blog, who works at a hospital lab in New York, told me about the test. Thank you very much for the information. His blood was not sent to SUNY but to a lab in Atlanta that has partnership with the hospital Leo goes to.
結果が出次第アップします。
I will update the results here.
CFDでないときはブログのタイトル変えないと…
I guess, if not CFD, I need to change the blog title...
そしてまた原因を探す毎日…
And that brings us back to the beginning of a long journey to seek the root cause of his symptoms...
Leo。
Leo.
ずっと痛い思いばかりさせてゴメンね…
So sorry to have given you a lot of pain to go through those tests...
今日も泣かずに採血に耐えてくれて…
You did bear the blood work without a single drop of tears...
胸が詰まります…
I hardly manage to see you doing that.
Category リハビリ (Rehab)
Leoがカイロに行き始めて今日で4回目。外から見れば何も変わってなく見えるが、日頃彼の世話をしている我々には違いは明らか。
Today was the 4th session at the chiropractics. No change is observed superficially, but a big difference from the caregiver point of view.
後ろから見た背中が違ってる。背骨に沿ってある二本の太い筋肉がしっかり見える。だから身体全体がしっかりしている。
His back looks different. I can see the two lines of muscles along the spine. So his entire body has a lot more strength.
何よりも脚があまりクロスしないし、左脚に体重が乗れる。
What's obvious is his legs are not crossing each other and for the first time, he can put his weight on his left leg, which is a big difference.
さっきも階段を上がる時、膝がよく上がるから、両脚で一段ずつではなく、片脚一段ずつ上れた(もちろん私が支えてだが)。
When he was going up the stairs with my support, he was going up faster with his legs high in the air.
ここ半年で初めてかも？
So for the first time in the last 6 months.
あとは座っているときの左脚がたまにしっかり、かかとが付いている。
And when he is sitting, his left heel is attaching on the ground.
いつもは突っ張って宙に浮いているから、これも久しぶり。うれし過ぎて写真を撮った。
Usually it is too spastic and stays in the air, so I was so glad that I took a picture of it.
今まで色々やってきたけどLeoの症状は悪くなるばかり。
We have tried so many things but his symptoms got worse and worse.
薬も効かないし、効かない化学物質を体内に入れてもしょうがないからやめた。
The medication did not work, so we stopped it.
そんな途方に暮れてる中、今のカイロの先生に出会い、数回のカイロで明らかに症状が数ヶ月前の状態に戻った。
We were totally at a loss, but encountered this chiropractic doctor and he got better with just a few sessions and brought him back to the better condition of what he was a few months ago.
微かな改善だけど、支えている手から伝わってくる確実な、そして初めての改善。
It is not a big improvement, but it is a firm improvement I can feel through my hands that support his body. It is the first improvement since two years ago when he was walking.
Leoもうれしいんだろう。アクティブに動くし、お腹に力が入るから声も張る。
Leo looks happy. He is more active, moves more and his voice is louder since he has more strength in his trunk.
こういう微かな違いだけど我々親には涙が出るほど嬉しい。
A small improvement, but for us, parents, we are so glad to see it.
カイロの先生に感謝。
Thanks a lot, doctor!
Today was the 4th session at the chiropractics. No change is observed superficially, but a big difference from the caregiver point of view.
後ろから見た背中が違ってる。背骨に沿ってある二本の太い筋肉がしっかり見える。だから身体全体がしっかりしている。
His back looks different. I can see the two lines of muscles along the spine. So his entire body has a lot more strength.
何よりも脚があまりクロスしないし、左脚に体重が乗れる。
What's obvious is his legs are not crossing each other and for the first time, he can put his weight on his left leg, which is a big difference.
さっきも階段を上がる時、膝がよく上がるから、両脚で一段ずつではなく、片脚一段ずつ上れた(もちろん私が支えてだが)。
When he was going up the stairs with my support, he was going up faster with his legs high in the air.
ここ半年で初めてかも？
So for the first time in the last 6 months.
あとは座っているときの左脚がたまにしっかり、かかとが付いている。
And when he is sitting, his left heel is attaching on the ground.
いつもは突っ張って宙に浮いているから、これも久しぶり。うれし過ぎて写真を撮った。
Usually it is too spastic and stays in the air, so I was so glad that I took a picture of it.
今まで色々やってきたけどLeoの症状は悪くなるばかり。
We have tried so many things but his symptoms got worse and worse.
薬も効かないし、効かない化学物質を体内に入れてもしょうがないからやめた。
The medication did not work, so we stopped it.
そんな途方に暮れてる中、今のカイロの先生に出会い、数回のカイロで明らかに症状が数ヶ月前の状態に戻った。
We were totally at a loss, but encountered this chiropractic doctor and he got better with just a few sessions and brought him back to the better condition of what he was a few months ago.
微かな改善だけど、支えている手から伝わってくる確実な、そして初めての改善。
It is not a big improvement, but it is a firm improvement I can feel through my hands that support his body. It is the first improvement since two years ago when he was walking.
Leoもうれしいんだろう。アクティブに動くし、お腹に力が入るから声も張る。
Leo looks happy. He is more active, moves more and his voice is louder since he has more strength in his trunk.
こういう微かな違いだけど我々親には涙が出るほど嬉しい。
A small improvement, but for us, parents, we are so glad to see it.
カイロの先生に感謝。
Thanks a lot, doctor!
