Guest guest Posted October 30, 2003 Report Share Posted October 30, 2003 Our cf doc says we should follow what our GI doc says since we have had such a difficult time trying to adjust Zach's enzymes. I have to call the GI doc again today anyway. We are finding it impossible to give Zach his previcid. He is to get 30 ml of syrup each morning. It is hard to get a baby to take that much medicine. I can't give it to him by syringe because the beads block the tip, so Zach must drink it. He takes two sips and stops. I am hoping they can give me the previcid that can be put in applesauce. Sara > > > I think you are right Sara. Have they tried several different > > types > > > of enzymes as well as doses? The greasy stuff is not normal. What > > > makes themthink he is pancreatic sufficient? (Sorry if I missed > > this > > > info. I may have skipped over it during my hiatus) > > > Lenora > > > > > > >Hi Everyone, > > > >Zach's cf doc agreed with his GI doc to try going without enzymes > > to > > > >see if Zach could be pancreatic sufficient. We won't have the > > > >elastase stool test results for two weeks. This morning Zach had > > a > > > >normal sized formed brown bowel movement and an enormous amount of > > > >oil in his diaper. I called the GI doc to tell him I was going to > > > >give him enzymes again and his nurse said the GI doc preferred > > that > > > >he not be on enzymes, but it was ok to try them again. I am so > > > >confused. What is this oil if it is not fat malabsorption? I > > have > > > >a strong suspicion that Zach is pancreatic insufficient and we > > just > > > >haven't found the right dosage or right enzymes yet. > > > >Sara - mommy of Zach 20 months > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2003 Report Share Posted October 30, 2003 Sara, My son is 21 months old, he has been on a liquid prevacid since leaving the NICU. The only thing we do is have it flavored at the pharmacy, and give it to him in an oral syringe. Our Prevacid in " Suspension " does not have beads. It is really chalking, and we shake it up until the chalk in the bottom re-dissolves in the liquid. Mike - Son 21 months w/CF _____ From: dwson2 Sent: Thursday, October 30, 2003 7:41 AM To: cfparents Subject: Re: Sara Our cf doc says we should follow what our GI doc says since we have had such a difficult time trying to adjust Zach's enzymes. I have to call the GI doc again today anyway. We are finding it impossible to give Zach his previcid. He is to get 30 ml of syrup each morning. It is hard to get a baby to take that much medicine. I can't give it to him by syringe because the beads block the tip, so Zach must drink it. He takes two sips and stops. I am hoping they can give me the previcid that can be put in applesauce. Sara .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2003 Report Share Posted October 30, 2003 Sara, Ask your doc to prescribe the " suspension " liquid Previcid. That's what we give Ellie and it works great. There are no beads so you can give it with a syringe. You just have to make sure you shake it really good before each use. Ellie actually loves the taste of it...she gets excited when I pull it out of the fridge. Re: Sara Our cf doc says we should follow what our GI doc says since we have had such a difficult time trying to adjust Zach's enzymes. I have to call the GI doc again today anyway. We are finding it impossible to give Zach his previcid. He is to get 30 ml of syrup each morning. It is hard to get a baby to take that much medicine. I can't give it to him by syringe because the beads block the tip, so Zach must drink it. He takes two sips and stops. I am hoping they can give me the previcid that can be put in applesauce. Sara > > > I think you are right Sara. Have they tried several different > > types > > > of enzymes as well as doses? The greasy stuff is not normal. What > > > makes themthink he is pancreatic sufficient? (Sorry if I missed > > this > > > info. I may have skipped over it during my hiatus) > > > Lenora > > > > > > >Hi Everyone, > > > >Zach's cf doc agreed with his GI doc to try going without enzymes > > to > > > >see if Zach could be pancreatic sufficient. We won't have the > > > >elastase stool test results for two weeks. This morning Zach had > > a > > > >normal sized formed brown bowel movement and an enormous amount of > > > >oil in his diaper. I called the GI doc to tell him I was going to > > > >give him enzymes again and his nurse said the GI doc preferred > > that > > > >he not be on enzymes, but it was ok to try them again. I am so > > > >confused. What is this oil if it is not fat malabsorption? I > > have > > > >a strong suspicion that Zach is pancreatic insufficient and we > > just > > > >haven't found the right dosage or right enzymes yet. > > > >Sara - mommy of Zach 20 months > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2003 Report Share Posted October 30, 2003 ; great advice all of it; we have always been told the same thing about me and our child wcf--and we both take Beta Carotene in giant amounts! Love to you, Santosh, Leela and Suresh, n Rojas Rojas5915@... Re: oily stools again > > > The GI doc seems to think that his gene mutations could indicate > pancreatic sufficiency and his fecal fat stool test was really low. > I think I have figured out why the fecal fat stool test may have > been unusually low. They told me to collect the stool for 72 hours > in a container. By removing his stool from the diaper, I think I > was removing the stool but not the fat. The fat is absorbed into > the diaper. I might need to bring this to the GI docs attention. > It was done before we started seeing him. > We have tried Ultrase and now we are on Pancrecarb. We used > anywhere from one enzyme per meal up to six. We have been > increasing and decreasing enzymes for eight months. > Zach's cf doc says that 90% of the time patients start enzymes and > the problem is fixed. Zach has had either all yellow mushy poop or > formed poop with lots of oil. He has gone from the 10 pecentile for > weight in August to 5th pecentile in October. He just can't gain > weight unless he is on antibiotic for an ear infection. Then when > he goes off the antibiotic he loses the weight he gained. Weird. > He will be getting tubes in his ears soon, so hopefully no more ear > infections. > It is all so confusing. Hopefully the test results will come back > quickly. > Sara > > > > I think you are right Sara. Have they tried several different > types > > of enzymes as well as doses? The greasy stuff is not normal. What > > makes themthink he is pancreatic sufficient? (Sorry if I missed > this > > info. I may have skipped over it during my hiatus) > > Lenora > > > > >Hi Everyone, > > >Zach's cf doc agreed with his GI doc to try going without enzymes > to > > >see if Zach could be pancreatic sufficient. We won't have the > > >elastase stool test results for two weeks. This morning Zach had > a > > >normal sized formed brown bowel movement and an enormous amount of > > >oil in his diaper. I called the GI doc to tell him I was going to > > >give him enzymes again and his nurse said the GI doc preferred > that > > >he not be on enzymes, but it was ok to try them again. I am so > > >confused. What is this oil if it is not fat malabsorption? I > have > > >a strong suspicion that Zach is pancreatic insufficient and we > just > > >haven't found the right dosage or right enzymes yet. > > >Sara - mommy of Zach 20 months > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2003 Report Share Posted October 30, 2003 I talked to the pharmacy and they said the packets are used to make the suspension liquid. I misunderstood and thought I need to use a whole packet. He only needs a half packet. The nurse said to divide the medicine as evenly as we can and give it to him in one tablespoon. I think this is going be to ok. Zach will drink that much. If he won't drink it I can spoonfeed it to him. I thought for sure there would be an alternative but the nurse said that is the way this GI doc always prescribes Previcid and she doubts that he would do it a different way. I think I can make it work though. Sara > > > > I think you are right Sara. Have they tried several different > > > types > > > > of enzymes as well as doses? The greasy stuff is not normal. > What > > > > makes themthink he is pancreatic sufficient? (Sorry if I > missed > > > this > > > > info. I may have skipped over it during my hiatus) > > > > Lenora > > > > > > > > >Hi Everyone, > > > > >Zach's cf doc agreed with his GI doc to try going without > enzymes > > > to > > > > >see if Zach could be pancreatic sufficient. We won't have > the > > > > >elastase stool test results for two weeks. This morning > Zach had > > > a > > > > >normal sized formed brown bowel movement and an enormous > amount of > > > > >oil in his diaper. I called the GI doc to tell him I was > going to > > > > >give him enzymes again and his nurse said the GI doc > preferred > > > that > > > > >he not be on enzymes, but it was ok to try them again. I > am so > > > > >confused. What is this oil if it is not fat > malabsorption? I > > > have > > > > >a strong suspicion that Zach is pancreatic insufficient and > we > > > just > > > > >haven't found the right dosage or right enzymes yet. > > > > >Sara - mommy of Zach 20 months > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2005 Report Share Posted June 9, 2005 Sara, SOOOOO FUNNNNNY!! Yes, let me try that to see what happens..I guess I would return to my pink slip...(haha) Sounds like you are getting better day by day! I can't wait to see our final results a few months from now! If I ever get a chance I will try to post some pre-op pictures! You are going to say boy that woman sure needs some help...(haha) Back to Work!! > > > Connie, > > > > > > you are too funny! of course you're welcome to come and visit in > > > Italy. Hopefully by then I'll have moved back. My fiancee and I > > are > > > just itching to get our life together started. > > > > > > I'm glad the pics helped visually. I understand what you mean. > I'm > > > visual too. I'll try to post another post-op pic of me today. And > > it > > > does help to have the family supporting you in all of this. My > mom > > > stayed with me in the hospital and I wouldn't have had it any > > other > > > way, even though I know I could have managed fine without her but > > > having family close by is always good. > > > > > > Right, I've been on the computer for a little too long this > > morning > > > and can feel my jaw straining already. Time for a break. I'll > post > > > more later. > > > > > > Sara > > > PS I liked the insight into the life and work of nurses and the > > great > > > doctor lousy husband story :-) a good sense of humour will help a > > lot > > > in getting through this surgery. My doctor keeps on telling me, > > you > > > must keep a positive attitude. You are not a deathly ill person > > you > > > are someone whose jaw is " under construction " ! Quote Link to comment Share on other sites More sharing options...
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