Dear all,
My 9 years old son has been taking Tamoxifen for 2 months now. He is taken care of by a wonderful team in Hadassah Hospital, Jerusalem.The drug considerably improved his condition: He can walk far longer, better and has more energy overall. And there are no side effects.
Just wanted to share.
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Dear Galia Ben Ishay,
Can you please share to me the dosage of Tamoxifen to your son? My son is now 49.4 kg, and he is 9. I would like to know how many mg my son should take per day. Thank you so much for your information.
Best wishes
Gloria Chen (from Taiwan)
Dear Gloria,
I give him 20mg every evening. I don't know if you can get it without prescription.
Good luck,
Galia.
Dear Galia, how is your son?Are you still taking tamoxifen?Your post inspired me very much
Taylan,
Could you share the range of CK values your son has had? I have not been able to find a range of CK values for Becker.
Thank you
taylan çakır said:
- Dear Galia Ben Ishay, 3-year-old son was diagnosed with BMD.47-48 exons detected deletion.Doktor said that the BMD is light but I worry too much for my son .. I have read thrilledly about your writing on temoksifen and I will have questions, 1) how much ck has fallen since using tempexifen, what was the ck value before, now how much? 2) does your son continue to improve, what changes do you observe in his or her gait and movements? 3) Do you have information about the status of other patients using tempexifene? 4) cortisone medications have periodic improvements, are you the effect of these cortisone drugs or the effect of temoksifenin? Exactly how much ck has fallen, if you write the obvious changes you observed in your son ... I wish for urgent healing and patience .. Thank you in advance for your reply ..
Dear Alex and Sulthana,
My son is stable, not better nor worse. I stopped giving him steroids (deflazacort) because there were only side effects, no benefits anymore.
All the best,
Galia.
Hi!Is there any news about Tamoxifen ?
Galia Ben Ishay said:
Dear Alex and Sulthana,
My son is stable, not better nor worse. I stopped giving him steroids (deflazacort) because there were only side effects, no benefits anymore.
All the best,
Galia.
Hi Galia,
I was wondering if your son is still using tamoxifen and if the situation is still stable or better. Is your son also using prednisolone or Deflazacort? And are there any side effects with tamoxifen? Can you also tell me when your son is start using tamoxifen?
All the best.
Kind Regards,
Sandro
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