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If you think he will require that surgery, it makes to get established there in Boston where you say they have expertise in this surgery.

I agree w others, start the process now for second opinion. The process takes several weeks, if not a month or so. By then you will have genetics you can bring along or send in advance. We have already transferred my son's pathology slides/blocks from his procedures up to Boston. They usually...

I agree w others, start the process now for second opinion. The process takes several weeks, if not a month or so. By then you will have genetics you can bring along or send in advance. We have already transferred my son's pathology slides/blocks from his procedures up to Boston. They usually...

8 yo with pancreatic insufficiency, fighting for genetic sequencing Beccamom, Thanks so much for that. I used that Quest Gazelle app for myself but I couldn't figure out how to use it for my son. Yes, I will do that, thanks! Thanks everyone. This has really been frustrating. My current GI doc...

8 yo with pancreatic insufficiency, fighting for genetic sequencing Victor Fox is who the second opinion team recommended. I don't know of I should ask for someone specifically or accept the recommendation. Thanks Bill.

8 yo with pancreatic insufficiency, fighting for genetic sequencing Yes, this is a CF accredited center and this dr works in the CF clinic, but he is a Pulmonologist. While my son's chest X-ray showed minor abnormalities, his PFTs were "good" but I haven't received a copy of the results yet...

8 yo with pancreatic insufficiency, fighting for genetic sequencing Ok, here is an update. We are on week 4 of awaiting the CF full sequencing and this is the correspondence I had with his pulm dr. I asked via email whether his CF full sequencing results were available yet? He replied no, but...

If your child is pancreatic insufficient, therefore requiring the Creon in order to digest food and grow as Ratatosk says, going without the enzymes will be painful to your child. I only recently found out my 8 year old is pancreatic insufficient. He has been complaining of stomach aches for...

If your child is pancreatic insufficient, therefore requiring the Creon in order to digest food and grow as Ratatosk says, going without the enzymes will be painful to your child. I only recently found out my 8 year old is pancreatic insufficient. He has been complaining of stomach aches for...

Colleen, I'm sorry you have these health issues with Hunter, I am sure you are stressed about all this. I'm sure others will also recommend that you are being seen by a certified CF center and possibly you should seek out one of the larger centers that would offer the best care. When you say you...

Colleen, I'm sorry you have these health issues with Hunter, I am sure you are stressed about all this. I'm sure others will also recommend that you are being seen by a certified CF center and possibly you should seek out one of the larger centers that would offer the best care. When you say you...

I always think more information is better. Though I would disagree that a sweat test rules out CF. there are plenty of people on these boards who had normal sweat tests but in fact have CF. not trying to be an alarmist but you can also request full genetic sequencing. If you search this site for...

I always think more information is better. Though I would disagree that a sweat test rules out CF. there are plenty of people on these boards who had normal sweat tests but in fact have CF. not trying to be an alarmist but you can also request full genetic sequencing. If you search this site for...

Also maybe consider: Fecal calprotectin, if elevated, indicative of inflammation (you already have mentioned you want to rule out IBD) Have you had colonoscopy? Ruled out celiac? You can also request genetic testing for celiac and IBD. It's not diagnostic but helpful to know if he has...

Also maybe consider: Fecal calprotectin, if elevated, indicative of inflammation (you already have mentioned you want to rule out IBD) Have you had colonoscopy? Ruled out celiac? You can also request genetic testing for celiac and IBD. It's not diagnostic but helpful to know if he has...

When they did the upper GI, did they do a pancreatic stim test? I have an 8 year old boy, you can read my story, it's just under your post. My son's fecal elastase was >500, but he is mild to moderately pancreatic insufficient as determined by the stim test. From my reading, fecal elastase is a...

When they did the upper GI, did they do a pancreatic stim test? I have an 8 year old boy, you can read my story, it's just under your post. My son's fecal elastase was >500, but he is mild to moderately pancreatic insufficient as determined by the stim test. From my reading, fecal elastase is a...

8 yo with pancreatic insufficiency, fighting for genetic sequencing Update, first CF panel of 32 mutations came back negative, remaining results will take about 6 weeks dr said. The whole genetics part of this is confusing, dr says if it comes back positive for 1 or 2 rare mutations, he does...

8 yo with pancreatic insufficiency, fighting for genetic sequencing Update: firstly, thank you both for replying. I really appreciate you taking the time to read and respond. From the pulmonilogist work up, sputum cultures and X-ray came back today. Culture positive for H influenza X-ray showed...

13 Sept DC Hosp!: 8 yo with pancreatic insufficiency, My son has always been in the bottom 10% across the board for height, weight, etc. Now he has fallen off the growth chart in height, barely on for weight and ok for bmi. The last few months he has suffered abdominal pain with eating and...