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I'm not up for posting too much at the moment; however, my wife & I have both adopted several kids with special needs, and in 2008 we adopted a 6yr old with CF. At 10 there are going to be some issues that have nothing to do with CF, but will be impacted by CF and the aggressive treatment...

No offense taken, but thank you. I chose to post in the thread, but this is one area I'm probably more passionate than most.

Yes, at 10 the ultimate decision is the parents, and there is little ethical conflict for the physician. However, I can state first-hand that after losing a 10 year old last month, that even at that age the child's opinion DOES count. If not to the doctor, it d*mn well better to the parents if...

I have looked at this and from a legal standpoint you can't really sell in the US, IF the person is intending to use it w/o a prescription. However, there is a pretty active used market in Canada & overseas (primarily for the Hill-Rom vests) due to a lack of access and the laws are not so...

The case at hand is specific on is it ethical not for mom, or son but the physician to knowingly ignore the desires of a 17yr old patient and obey the mother. Legally the answer is clear, mom wins, unless the child has the means to request a judge the ability to speak for himself. Morally and...

Thank you all for your thoughts. Micah fought a long and hard fight; but he now breathes easy. Life feels so empty today, the house too quiet and my heart to torn to ever mend. It is the support of our family and friends that will get us through so thank you.

First welcome to the site. I hope you are able to find some support and friendship here as there are a lot of great people. As for the port, while many see it as a 'bad' thing, it can be very liberating. No more pics, no more need to stick for bloodwork, you can remove to shower/swim/etc...

First welcome to the site. I hope you are able to find some support and friendship here as there are a lot of great people. As for the port, while many see it as a 'bad' thing, it can be very liberating. No more pics, no more need to stick for bloodwork, you can remove to shower/swim/etc...

My thoughts: 1) A flu outbreak in school tends to be swift and large and often dies off. If it has been a week the chance that it is winding down is good. 2) While immuno-compromised, I'm assuming he knows to wash hands, not rub his mouth/nose, etc. Based upon those, *I* would probably wait...

My thoughts: 1) A flu outbreak in school tends to be swift and large and often dies off. If it has been a week the chance that it is winding down is good. 2) While immuno-compromised, I'm assuming he knows to wash hands, not rub his mouth/nose, etc. Based upon those, *I* would probably wait...

Thank you all for your thoughts & prayers.

Thank you all for your thoughts & prayers.

I don't know what to say, or even if it should be said; but I & my family are reeling from the realities that are hard to swallow. We were told 2 weeks ago that we were/had run out of options to prolong the life of Micah's liver and we needed to start considering our plans as he is not a...

I don't know what to say, or even if it should be said; but I & my family are reeling from the realities that are hard to swallow. We were told 2 weeks ago that we were/had run out of options to prolong the life of Micah's liver and we needed to start considering our plans as he is not a...

Maggie, at the last CF sponsored conference on CFRD the consensus was not to use oral meds for CFRD as they were not as effective as Insulin. While this doesn't mean they can't be tried, or that they might not work but it is not supported by the CFF meaning most clinics won't even consider it...

Maggie, at the last CF sponsored conference on CFRD the consensus was not to use oral meds for CFRD as they were not as effective as Insulin. While this doesn't mean they can't be tried, or that they might not work but it is not supported by the CFF meaning most clinics won't even consider it...

If you look in the families forum, the very first post (Ambry) will put you in touch with Steve from Ambry who will look in their database and share any information they have on this mutation. Just post a quick request there and he will usually give you any experience or knowledge they have.

If you look in the families forum, the very first post (Ambry) will put you in touch with Steve from Ambry who will look in their database and share any information they have on this mutation. Just post a quick request there and he will usually give you any experience or knowledge they have.

Bill, nobody is saying your GI is wrong and the condescening comments are not valuable to the site. This was a thread about how to wean off enzymes; dbtoo posted about that. However, to clarify the manufacturer of Creon & the FDA have established a maximum safe level of 10,000units/kg/day. At...

Bill, nobody is saying your GI is wrong and the condescening comments are not valuable to the site. This was a thread about how to wean off enzymes; dbtoo posted about that. However, to clarify the manufacturer of Creon & the FDA have established a maximum safe level of 10,000units/kg/day. At...