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Dear Dr.Barcia
@I really appreciate your attention to my e-mail and your reply.
Since we need as much as information, we are really pleased that we could receive your reply.Please let me ask you some questions.
<ALP level>
Our doctor had used Elcitonin to my son for 3 months to slow down bone
resorption. However my son repeated spitting up milk, especially after injection. So we stopped to use
Elcitonin.
Recently Dr.Ozono, who has been studying this disease in Japan, came to see
my son. Since we have never had someone who had this disease before in my family,
Mr.Ozono advised us to do gene testing. We decided to do that.
According to Mr.Ozono's comment, my son's ALP level is too low (30 IU/ml at
birth and now it gets down to 10 IU/ml). We note that your patient's ALP level was 39IU/ml.
We read another article written by Mr.Mochizuki, who succeed in treating the Japanese girl with infantile
pypophosphatasia. In this article, Mr.Mochizuki stated that his patient's ALP level was quite high (193IU/ml) and this might be one of the reasons that his patient could survive the disease.
I am really concerned about my son's low ALP level.
In case of low ALP level, do you think that it difficult to form bones, even if bone resorption is slowed down?
What is your idea about relationship between ALP level and surviving.
<New medicine>
We also have got information about bisphosphanates which will be effective at slowing bone
resorption. Since my son's calcium level is stable (12mg/dl), we have never tried this medicine.
We had been looking for a medicine to help with bone formation, however we only found that there is not such kind of medicine. I will ask our doctor about
'statins' which you mentioned in your e-mail and will see if we can use it to my son without any problem.
<Complications>
According to your e-mail, it seems that your patient did not have any complications. No complication at all? No surgical operation to her? In case of above-mentioned Japanese girl, she had a surgical operation for craniostenosis. Our doctor told us that my son will also need operation for craniostenosis later because of his poor bone deposit.
<Breathing problem>
My son is now 7 months old. The other day, he had a breathing problem for the first time. He had pneumonia at age 5 moths and recovered. However because of spitted milk, he has suffered
atelectasis. Now he receives rehabilitation.
Did your patient have this kind of trouble?
<Discharge>
How old was your patient when she was discharged from the hospital? And how was she at that time?
My son's weight is now 4Kg and he can not gain his weight adequately. How was your patient?
Did your patient drink much milk? Did she need a drip infusion for a long time?
<Growth>
I really know that growth speed depends on individual, however please let me know at what age your patient started to hold up her head, sit down and walk?
When you saw her last time, how was she? Was she able to move like other kids do?
How about bone fracture?
I am really sorry that I am asking you many questions.
Though I know how busy you must be, your reply would be very much appreciated.
We wish you continued success in the future.
Sincerely yours
Motoichi Aoki |