We talked a while ago before the holidays and unfortunately I had to miss your tastefully simple party. I am getting a little more settled with the new baby and Michael. Would still like to meet up with you since you are so close. Hope all is well.
I feel like I am torturing you with more suggestions, but just want to make sure that Brenden doesn't miss out, if he doesn't have to. Jack wont take it if it is mixed with something cold, it's too lumpy. We have to use warm water and he drinks it through a straw to make it go quickly and so he doesn't taste as much. Talk to Dr. Finkle and see if they can make an exeption and let Brenden take it in a spoon full of yogurt, vanilla icecream or something!! There has to be a way and I sure hope they find it!
Good luck! I know this all isn't easy and then add this and I would probably be going crazy!
I just read your post where you were talking about giving up on giving Brenden the PTC-124. I hope you have found a way to give it to him by now. Jacob doesn't have a stop codon mutation but when we started to give him vitamins and coQ-10 we had some difficulties at first but then I told him that if he held his nose he wouldn't taste the pills. This has worked great. I'm assuming the medication is in power form? What about taking it to the pharmacy and have them put it in capsules for you? Or have them try to add a taste to it? Something that he likes?
If that doesn't work and you think a mentor like Jacob would help him just let me know. Jacob understands now what the medicine is for and doesn't give us any problem taking it. Maybe he could talk to your son for you.
So sorry about getting Brenden's name wrong. I'm still figuring out all the where's and how's of the new site, and read the post below mine and stole the wrong son's name to post to you. :) One day I'll get the hang of this...
I wish you all the luck with Brenden's PTC intake. I hope it works wonderfully for him...your son's in my prayers. It's so very hopeful to see at least some of "our" boys with more options medically.
I read that you're having difficulties getting the PTC124 into Jacob. We don't qualify for the study, but my seven-year-old is taking creatine (a powder) and carnitor (a liquid) which we did a bit of experimenting with before finally finding that he does best with the meds when I mix them with...soda. I know, NOT healthy, but we do what must be done. I don't know if it's a better flavor, if the carbonation helps the texture, or if it's just the novelty that I'm letting him have POP...but he doesn't complain nearly as much as he used to.
I hope you've already resolved your difficulties, but if not...maybe you could give soda a try. We use Sprite. Good luck!!!
Jacob goes to Special Equestrians in Warminster on Street Road. He loves it and it has really helped him with his core muscles and keeping his balance. They do a competition in the summer and he won 2nd place in his category. They just obtained a truck to transfer the horses to other events so he is very excited about competing other places. They also are thinking about starting a summer camp for the kids.
My phone number is 215-345-7421. Call anytime:)
Maybe Jacob and Brenden can get together some time.
Hi Barb! Good to see you! Why won't your little guy take the PTC124? I am following on caringbridge Anthony Castle who is on it. He seems to be doing well.
I hope you all have a very Merry Christmas!!!