Recent content by just1more

In theory they could/might work and I know of some people with CF that have had or used them. However, to my knowledge there is no existing research to back up if they really work. It comes down to one of an uncountable number of ideas somebody has to make this disease more manageable. Each...

I'd honestly be worried, but the odds of stopping it are probably low if they already have their permit. Revoking an EPA permit would take legal action and someone with deep pockets. By definition: "Class B biosolids are treated but still contain detectible levels of pathogens."...

If the dose is correct (and he needs them) then yes you should be seeing a change. I'd give a call to the CF center where you are being seen and ask for advice. If you are not being seen at an accredited CF center, that needs to be your first step...then address the enzymes. I notice you...

If he is in that kind of pain I'd suggest taking him in. As for which ER, that is going to be based upon your gut which is still developing given your newness to CF. If he continues to have shortness of breath, or pain I'd probably head to the CF center if you can. The local ER can evaluate...

I have Respirtech vest system for sale I just listed on eBay. We don't need it anymore and I can't figure out how to find a new home for it easily. If you are interested or know someone that is here is the link...

Unless your daughter's physician tells you otherwise, keep breastfeeding and know she will improve with time. There is no hard deadline that says when you have to regain birth-weight, or anything else. While long-term you need to make ever effort to put on weight, as long as she is gaining...

If the enzymes worked (weight gain, improved bowels) then there is no reason to stop using enzymes in my opinion. While what Dr 2 says, makes clinical sense (regarding elastase results) if enzymes improve symptoms, then you use enzymes. Lab tests are not 100%. I'd go back to Dr 1, and if...

If he is selling the supplies you list without a valid prescription he is in violation of federal law. End of discussion.

Doug, I can give you a different perspective than just about anyone else on this site. My son died from CF in July at the very young (even for CF) age of 10. What I can tell you, is while his time was short and filled with struggles, I can't imagine him not having been part of our life. Life...

If it is not accessed, you can do anything you want. The only consideration would be to avoid direct impacts (ie don't let it get hit hard). If you are not using it, it will need to be flushed 1x/month. All you will do is access, push a syringe of saline and then heparin, and then de-access...

May I ask where you live (country, nothing more detailed since we are online)? Based upon this post it is pretty clear you are not in the US, and therefore I just want to let you know that you may see some differences between what most of us are used to and what your local physicians tell you...

1) Clinically only a Dr that examines you can answer this question, and then it is still just a guess. Conceiving with CF can be more difficult, or it can be as easy as anyone else. There is no way to test or know. If you get to a point to attempt to get pregnant and it isn't working, then go...

Just bumping for Julie, she deserves your votes!

As for dosing, follow the suggestions of your CF doctor, or the nutritionist at the clinic. Over time you well develop a sense for how to judge need. Meals tend to be a set amount, snacks get a trickier, especially as they get older and can self feed. As she grows you will increase enzymes...

Ok, you are asking for feedback, so based upon your posts this is my take: 1) Panceatin is porcine (pig) pancreatic enzymes. While it is similar to Creon or other prescription enzymes, it is not the same. In addition, it is not regulated because it is considered a supplement and not...