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Hi all! Kate had a great clinic visit a couple weeks ago. Hardly any weight gain from the previous visit, but she had a nasty case of hand, foot, mouth for a week beforehand, so the lack of eating with that they thought probably caused the little weight gain. She had a clear culture which...

Hi Khristina! I thought I'd add to this discussion... My daughter has a nonsense mutation too, (along with delta F508) and even though it is class 1, she has never had any major problems (only a toddler though) but the research on the PTC124 sounds really promising! So, you might end up even...

Hi Khristina! I thought I'd add to this discussion... My daughter has a nonsense mutation too, (along with delta F508) and even though it is class 1, she has never had any major problems (only a toddler though) but the research on the PTC124 sounds really promising! So, you might end up even...

Hi Khristina! I thought I'd add to this discussion... My daughter has a nonsense mutation too, (along with delta F508) and even though it is class 1, she has never had any major problems (only a toddler though) but the research on the PTC124 sounds really promising! So, you might end up even...

Hi Khristina! I thought I'd add to this discussion... My daughter has a nonsense mutation too, (along with delta F508) and even though it is class 1, she has never had any major problems (only a toddler though) but the research on the PTC124 sounds really promising! So, you might end up even...

Hi Khristina! I thought I'd add to this discussion... My daughter has a nonsense mutation too, (along with delta F508) and even though it is class 1, she has never had any major problems (only a toddler though) but the research on the PTC124 sounds really promising! So, you might end up even...

Hi Khristina! I thought I'd add to this discussion... My daughter has a nonsense mutation too, (along with delta F508) and even though it is class 1, she has never had any major problems (only a toddler though) but the research on the PTC124 sounds really promising! So, you might end up even...

Hi, I just thought I'd add what we do. I have a 19 month old and we do CPT twice a day and 3-4 if sick. She has been doing great and I do believe it is the preventative care. My mom watches Kate when I am at work, and she will do the CPT for me as well. We are very lucky! When I took Kate...

Hi, I just thought I'd add what we do. I have a 19 month old and we do CPT twice a day and 3-4 if sick. She has been doing great and I do believe it is the preventative care. My mom watches Kate when I am at work, and she will do the CPT for me as well. We are very lucky! When I took Kate...

Hi, I just thought I'd add what we do. I have a 19 month old and we do CPT twice a day and 3-4 if sick. She has been doing great and I do believe it is the preventative care. My mom watches Kate when I am at work, and she will do the CPT for me as well. We are very lucky! When I took Kate...

My daughter always cultures e coli. They said that is normal for the little ones though. She also did culture pseudomonas at about 6 months, but we admitted her for IVs and she has been clear since. We go in about 2 weeks to clinic and I am already biting my nails worried about what Kate will...

My daughter always cultures e coli. They said that is normal for the little ones though. She also did culture pseudomonas at about 6 months, but we admitted her for IVs and she has been clear since. We go in about 2 weeks to clinic and I am already biting my nails worried about what Kate will...

My daughter always cultures e coli. They said that is normal for the little ones though. She also did culture pseudomonas at about 6 months, but we admitted her for IVs and she has been clear since. We go in about 2 weeks to clinic and I am already biting my nails worried about what Kate will...

I've been wondering the same thing. My daughter is 18 months and not talking at all, just babbling a ton. At 6 months she was on IV tobi to eradicate psuedomonas (it worked!) and then a month at home of TOBI. Now we are wondering if the Tobi did something to her hearing. We go in next week...

I've been wondering the same thing. My daughter is 18 months and not talking at all, just babbling a ton. At 6 months she was on IV tobi to eradicate psuedomonas (it worked!) and then a month at home of TOBI. Now we are wondering if the Tobi did something to her hearing. We go in next week...

I've been wondering the same thing. My daughter is 18 months and not talking at all, just babbling a ton. At 6 months she was on IV tobi to eradicate psuedomonas (it worked!) and then a month at home of TOBI. Now we are wondering if the Tobi did something to her hearing. We go in next week...

We are going through the exact same thing! I have little one that will be 18 months in a week, and all she wants is chicken nuggets and yo baby yogurt! She runs around playing like a mad woman though, and never seems tired even though she barely eats! Our clinic suggested Carnation Instant...

We are going through the exact same thing! I have little one that will be 18 months in a week, and all she wants is chicken nuggets and yo baby yogurt! She runs around playing like a mad woman though, and never seems tired even though she barely eats! Our clinic suggested Carnation Instant...

We are going through the exact same thing! I have little one that will be 18 months in a week, and all she wants is chicken nuggets and yo baby yogurt! She runs around playing like a mad woman though, and never seems tired even though she barely eats! Our clinic suggested Carnation Instant...

Another question for those of you with PTC124 experience, do you still need enzymes and CPT while on it? What about other meds? Thanks, Zoe