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Ddawson, that is super helpful information. I think I might need to push on the genetic testing for him then. If he ends up in the hospital one more time, his pediatrician agreed that we should send him somewhere where they deal with more rare diagnosis and stuff. Kristan that article is sooo...

Wow, this is super interesting. He had genetic testing for cf after much pushing but I didn’t get him genetically tested for pcd. Maybe I should continue to push for that as well, if we don’t get answers with some Labs I’m waiting on. He does have reflux, but does not aspirate. He has the...

Genetic testing is negative. On to trying to figure out our next step to get a diagnosis! Thanks for all the help and input.

Nasal biopsy came back negative for PCD but we are still waiting for genetic testing for cf to come back.

Thank you for all the information! Hopefully they will do a biopsy when they do his bronchoscopy on Friday so we can figure it all out. I’ll let you know if they figure it out though. He also has the genetic testing for Cf done the same day. I also just discovered today that he has no...

Thanks for the input. Did you have the full ambry panel workup? The pulmonoligist agreed it’d be a good idea just to rule it out since we are running out of ideas.

I have never heard of this, but I will definitely look into it. My son just saw his pulmonologist yesterday and he ordered a bronchoscopy for next Friday and he gave the okay for genetics to do cf testing and immunology is doing a blood work up as well. Do you know how it’s diagnosed and what...

I have been checking out his stools much more recently because I don’t really Know what people mean by oily and greasy, but he has lots of stools that are more on the slimy side that when he wore diapers, would soak into the diapers quite a bit, but I’m not sure if that’s what you mean. I will...

I do understand that is significantly low, but I have read about families with negative sweat chloride who still ended up with positive genetic testing, even if considered a mild form. I would love to at least rule it out because it is one of the only few things that makes sense with all he has...

He got 19 and 11, it was done at the children’s hospital lab, so I’m not sure? He was 2 when it was done. They have been bulky, but he also goes through periods of diarrhea. He rarely has normal healthy stools. I’m honestly not sure if he was tested as a newborn? I should mention, he did not get...

Hello! I have joined this group because I’m trying to get some ideas on what could be going on with my two year old. Warning: this may be a long explanation He was born with gastroschisis (intestines outside of his body) at 37wks, and was 3lbs 6oz. He has struggled to gain weight and Has almost...