We have been home from our latest check-up visit in Perth for a week now, but I have only just now had a chance to give an update.
We took our middle son, who is four and a half years old, with us for his sweat test to see if he has cystic fibrosis as well. He was one of our kids that we put a question mark over when we found out our youngest had CF. However, due to the long process we went through with our daughter’s diagnosis (or lack thereof) he was put on the back burner. However, I am very pleased to announce that his sweat test came back within normal levels. He does not have CF 🙂
We do not know yet if he is a carrier. He has to make the decision to be tested for that when he is older. Trust me when I say that we will be strongly advising him (along with our eldest son, whose sweat test also came back negative) to undergo that test!
Back to my CF son….
The respiratory doctors were basically “Thanks for travelling 450km. Everything is fine, we will see you in three months!” I guess you can say that is annoying, due to the travel, but its the best outcome you can hope for!
The dietician would like us to write a diary of his food intake for about a week before we return for the next visit so they can see how we can tweak his diet to boost his iron intake (as he is slightly iron deficient) I’m not sure how else we can do this without medication as he is an absolute carnivore! We try leafy green vegetables, but good luck getting those sort of foods into a two-year old! But they want to retest his iron levels in three months.
The gastroenterologist was concerned that my son was at his maximum amount of enzyme tablets (pills to help digest food) a day, yet was still pooping too much. So he has been prescribed another medication, Losec, to help the enzymes break down. They will see how he is going at the next clinic.
We found an instant result with the new tablets. They almost work too well. But we can reassess later on. But for now, at least my house doesn’t stink as bad! But the poor little blighter is now on six different medications a day (that’s just when he isn’t sick!)
Overall, it was a successful trip for my youngest son. But, the biggest thing that had me walking out of the hospital smiling, was the fact that the doctors have taken me very seriously in regards to my daughter’s eating habits. They have agreed that we aren’t very well supported back home, so they going to class her as “CF” so that we can see their child psychologists on their team. Since she is coming with us again on our next visit, they are setting up an endocrinology appointment to rule out anything physical, since no psychologist will ever take us seriously without having ruled that out first. I just about kissed the doctor when I realised he was taking my concerns seriously, and was just as concerned as we are. A weight got lifted off my shoulders when I mentioned to him that it had been suggested to me in the past that she may have Prader Willi Syndrome, and he said it was one of his first thoughts of possibilities, but we have to do the endocrinology first.
It was the first time ever that I walked out of the hospital happy and relieved!
There will be more news on my son at the next visit in three months time when he has a heap of blood work done to test all his levels. So I will update you all again then!