😂How did I KNOW you would make this comment haha! I couldn’t find it I SWORE I had one 😂 (lost in the move I guess). The funny thing is Lynn had the exact same thought and got me a silicone one the next day after watching this. 🤷🏼♀️😂
Hello! They actually didn’t test CK immediately after therapy. We just got it retested two weeks ago (8 months after therapy) and was 25k. So it was about the same as right before the gene therapy so I’m not sure how it fluctuated after his treatment.
They are not on deflazacort yet. It's the next med on the list for us to look into. I believe this one is a min of age 6 I believe? (Don't quote me) so they are not quite of age yet 😁 ...do you have experience with it?
Do I need to buy you a muffin pan?? Lol
Do I need to buy you a muffin pan?? lol
😂How did I KNOW you would make this comment haha! I couldn’t find it I SWORE I had one 😂 (lost in the move I guess). The funny thing is Lynn had the exact same thought and got me a silicone one the next day after watching this. 🤷🏼♀️😂
Hello, could you tell me what is your boy's Creatine Kinase level a few months after gene therapy? Thank you!
Hello! They actually didn’t test CK immediately after therapy. We just got it retested two weeks ago (8 months after therapy) and was 25k. So it was about the same as right before the gene therapy so I’m not sure how it fluctuated after his treatment.
Are they on Deflazacort?
They are not on deflazacort yet. It's the next med on the list for us to look into. I believe this one is a min of age 6 I believe? (Don't quote me) so they are not quite of age yet 😁 ...do you have experience with it?
@@BafusFamily I have a 15 year old on it. Didn’t have the weight issue and moon face like the generic prednisone. But he now has cataracts.
That is good to know thank you! but dang about the cataracts. i hate they have one more thing to worry about :(