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When it comes to there being more mutations being 'found' all the time... <br /> <br />Ambry doesn't 'look for' any specific set of mutations. They sequence the entire gene to catch any abnormality that may be there. Someone can get the test done several times, and unless Ambry changes how...

Has she started some new nebs with the vest? Pulmozyme got Emily's nose running a little, hypertonic saline a LOT. There is a chance the vest is helping whatever nebs she is doing get a lot deeper into her respiratory tract; in any case getting things moving vs. it staying stuck up there is a...

Has she started some new nebs with the vest? Pulmozyme got Emily's nose running a little, hypertonic saline a LOT. There is a chance the vest is helping whatever nebs she is doing get a lot deeper into her respiratory tract; in any case getting things moving vs. it staying stuck up there is a...

Has she started some new nebs with the vest? Pulmozyme got Emily's nose running a little, hypertonic saline a LOT. There is a chance the vest is helping whatever nebs she is doing get a lot deeper into her respiratory tract; in any case getting things moving vs. it staying stuck up there is a...

Yeah, I really like the concept of these places, but there are so many hurdles to overcome in the execution. Photos show heaps of salt and salt clinging to the walls, etc at many of these places. I doubt that salt is removed from the room and replaced between patients and it does not remain...

I'm so sorry, Tamara. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I hope by now you've gotten some relief. Oh and yeah we tried the typical Fleet enema, too... but an obstruction due to DIOS is much too far up to be helped with a home enema, and it did no good. Miralax has...

I'm so sorry, Tamara. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I hope by now you've gotten some relief. Oh and yeah we tried the typical Fleet enema, too... but an obstruction due to DIOS is much too far up to be helped with a home enema, and it did no good. Miralax has...

I'm so sorry, Tamara. <img src="i/expressions/face-icon-small-sad.gif" border="0"> I hope by now you've gotten some relief. <br /> <br />Oh and yeah we tried the typical Fleet enema, too... but an obstruction due to DIOS is much too far up to be helped with a home enema, and it did no good...

Emily(9) has had several bouts with DIOS over the last year and one in particular was awful and dragged on for a few weeks; we tried several things to get her cleaned out (Miralax in increasingly huge doses- 8 caps in 32oz of gatorade, milk of magnesia, mag citrate, etc), repeated xrays showed...

Emily(9) has had several bouts with DIOS over the last year and one in particular was awful and dragged on for a few weeks; we tried several things to get her cleaned out (Miralax in increasingly huge doses- 8 caps in 32oz of gatorade, milk of magnesia, mag citrate, etc), repeated xrays showed...

Emily(9) has had several bouts with DIOS over the last year and one in particular was awful and dragged on for a few weeks; we tried several things to get her cleaned out (Miralax in increasingly huge doses- 8 caps in 32oz of gatorade, milk of magnesia, mag citrate, etc), repeated xrays showed...

Thanks Stacey. <img src="i/expressions/face-icon-small-smile.gif" border="0"> She had her followup appt yesterday... and we are continuing the IV's for another week. I can't say it was a surprise~ I knew she was still coughing a lot more than she should be, but it was disappointing. What I...

Thanks Stacey. <img src="i/expressions/face-icon-small-smile.gif" border="0"> She had her followup appt yesterday... and we are continuing the IV's for another week. I can't say it was a surprise~ I knew she was still coughing a lot more than she should be, but it was disappointing. What I...

Thanks Stacey. <img src="i/expressions/face-icon-small-smile.gif" border="0"> <br /> <br />She had her followup appt yesterday... and we are continuing the IV's for another week. I can't say it was a surprise~ I knew she was still coughing a lot more than she should be, but it was...

Unless genetically disease can be 100% ruled out (sibs or parents have known mutations), I think the more likely possibility is an undiscovered mutation, like Heather states. However, if a carrier can sweat a 54 (as my son did) and go on to get a perfectly normal NPD test, which would...

Unless genetically disease can be 100% ruled out (sibs or parents have known mutations), I think the more likely possibility is an undiscovered mutation, like Heather states. However, if a carrier can sweat a 54 (as my son did) and go on to get a perfectly normal NPD test, which would...

Unless genetically disease can be 100% ruled out (sibs or parents have known mutations), I think the more likely possibility is an undiscovered mutation, like Heather states. <br /> <br />However, if a carrier can sweat a 54 (as my son did) and go on to get a perfectly normal NPD test, which...

Bit of an update... We have definitely found more of a routine with this. Emily has been very cooperative with the IV's, which helps, and was great for her dressing change. The neverending vest nebs vest nebs vest nebs vest nebs has been incredibly wearing though~ it seems like she barely...

Bit of an update... We have definitely found more of a routine with this. Emily has been very cooperative with the IV's, which helps, and was great for her dressing change. The neverending vest nebs vest nebs vest nebs vest nebs has been incredibly wearing though~ it seems like she barely...

Bit of an update... <br /> <br />We have definitely found more of a routine with this. Emily has been very cooperative with the IV's, which helps, and was great for her dressing change. <br /> <br />The neverending vest nebs vest nebs vest nebs vest nebs has been incredibly wearing though~ it...