u/Mad_Coconutty

She's almost a year. Most days are fine but today I'm feeling really sad again about her diagnosis.

She's modulator eligible and pancreatic sufficient, so two 'positive' traits. But honestly, I still worry about her future a lot.

We're just in the middle of our first winter (southern hemisphere) and its been rough. Older sibling in daycare has brought bugs home, we just had our first stint in hospital for IV antibiotics.

I'm really really banking on these modulators to work for her. In my mind they'll fix everything. In my mind research will go on and by the time she's a teen there will be even better treatments. But I know that might not be realistic and it's really difficult to cope with. I read posts of people on modulators who still struggle a lot (although they would have started modulators as adults, not toddlers).

I don't even know what I want from this. Solidarity?

My baby is PS and we have been told by the local CF dietician they don't see pancreatic sufficient kids because there's nothing to do.

Our national guidelines don't differentiate between PI and PS CF but I just don't feel that's right?

If you or your child is PS, so you still see a dietician and if yes, how often and what do they do/ monitor?