Guest guest Posted March 7, 2003 Report Share Posted March 7, 2003 Hi everyone, Here's our story and we will really appreciate any infos or experiences related to any of our concerns. Thank you. Our son is considered as pancreatic sufficient. He did two 72hours stool tests of fat output (one at six weeks and one at 1 year) , both negative. But , we still are concern about some problems he has : He is now 18 months, doing 5 stool per day. Stools are smelling more than ever and are rarely « shaped ». And he has some problems since he hs 6 months old with his weight. He is very tall (a lot over 97 perc.) and not big (50 perc.) : his height/weight ratio is around or under the 5th percentile. His weight curve dropped from 95 to 50. Does anyone has a sufficient child? Do they have similar problems? From what we read, a lot of cf children can become insufficient by the age of 3. Does anyone has noticed that with his child? What happened? got his intestin perforated intra-utero and had a surgery at birth (colostomia for three months). That increase our concerns because we know that a vast majority of cf person who had a meconium ileus are pancreatic insufficient. Also, I'm still breastfeeding him three times a day and I'm also concern that it can " hide " an insufficiency… We are not sure either if we should ask for an Elastase-1 stool test . We have read that it is not very good for a small pancreantic insufficiency but we are not sure of this information. Does anyone knows? This test is not avalaible in Canada and we will have to go in US and pay to get it. So better to know before... One of 's mutation (R347 P) is generally considered as a «sufficient » mutation. But from some research we have read , only around 20% are in fact sufficient. Does anyone knows about this mutation? Sorry for that long email. I really appreciate being a member of this group. I dont write as often as I would like to because english is not my first language…so please forgive me for my english mistakes. Marie-Josée Paquin (mother of , 18 months) Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.