repeating the sweat test.

Foody

New member
I agree with Amy. Had we received a DNA panel test like Ambrey or Guthrey at 7 weeks when he presented with vitamin K deficiency it would have saved us 7 more weeks of unsuccessful sweat tests and many more complications. It wasn't until the 4th one they finally were able to get a positive and 2 weeks later we were confirmed via DNA testing. Try and push for the DNA testing if you can. I know how hard all of this waiting and testing is...hang in there.

Sincerley,
 

Foody

New member
Ben's mom, it took our Ben some time to finally even out after 14 weeks of malnourishment due to needing enzymes and being undiagnosed. When they do not have enzymes for so long the gut is inflammed and never had a chance to build the proper flora to aid in digestion. We breastfed and supplemented the predigested formula at first. They kept wanting up to slam calories into him, but honestly the higher we went in calories the worse off he was. He could only tolerate a little bit of the stuff and only at 22 calories max. If we went up his poops went south no matter how many enzymes we gave. I think there is a point where too much fat and protein from formula will just taxed their tiny recovering systems and it show no benefits (my nutritionist actually agreed with this theory...I asked why they do it and she said she wasn't sure). The best thing we did was add a probiotic (acidophilus) to his applesauce everyday. Culterelle is good but we switched to KidDophilus because he can't handle any dairy. THis helped build the gut flora and reduce inflammation. After about 6-8 weeks of helping the gut to heal, he gained. We slowly weaned off the formula and he eventually kept climbing the charts. When he was introduced to solids around 6 months, we would add a tiny bit of MCT (melted virgin coconut oil is also great and is medium chain fats; it also helps gut flora) to his rice cereal and fruits/veggies, but we went really slow so we could adjust enzymes if needed. Too much oil will also go right through if the gut can't handle it.

Perhaps a strategy to discuss with them is to work on establishing gut flora with probiotics, reducing calories (getting the extra MCT out for a short time) until some absorption is seen (stools begin to normalize). Then if he can handle it, slowly go up to maybe 24 cal. This weight thing isn't an over night thing and in my experience takes many months for all the systems to normalize from being malnourished.

Hang in there. Slow and steady does it.
 

Foody

New member
Ben's mom, it took our Ben some time to finally even out after 14 weeks of malnourishment due to needing enzymes and being undiagnosed. When they do not have enzymes for so long the gut is inflammed and never had a chance to build the proper flora to aid in digestion. We breastfed and supplemented the predigested formula at first. They kept wanting up to slam calories into him, but honestly the higher we went in calories the worse off he was. He could only tolerate a little bit of the stuff and only at 22 calories max. If we went up his poops went south no matter how many enzymes we gave. I think there is a point where too much fat and protein from formula will just taxed their tiny recovering systems and it show no benefits (my nutritionist actually agreed with this theory...I asked why they do it and she said she wasn't sure). The best thing we did was add a probiotic (acidophilus) to his applesauce everyday. Culterelle is good but we switched to KidDophilus because he can't handle any dairy. THis helped build the gut flora and reduce inflammation. After about 6-8 weeks of helping the gut to heal, he gained. We slowly weaned off the formula and he eventually kept climbing the charts. When he was introduced to solids around 6 months, we would add a tiny bit of MCT (melted virgin coconut oil is also great and is medium chain fats; it also helps gut flora) to his rice cereal and fruits/veggies, but we went really slow so we could adjust enzymes if needed. Too much oil will also go right through if the gut can't handle it.

Perhaps a strategy to discuss with them is to work on establishing gut flora with probiotics, reducing calories (getting the extra MCT out for a short time) until some absorption is seen (stools begin to normalize). Then if he can handle it, slowly go up to maybe 24 cal. This weight thing isn't an over night thing and in my experience takes many months for all the systems to normalize from being malnourished.

Hang in there. Slow and steady does it.
 

Foody

New member
Ben's mom, it took our Ben some time to finally even out after 14 weeks of malnourishment due to needing enzymes and being undiagnosed. When they do not have enzymes for so long the gut is inflammed and never had a chance to build the proper flora to aid in digestion. We breastfed and supplemented the predigested formula at first. They kept wanting up to slam calories into him, but honestly the higher we went in calories the worse off he was. He could only tolerate a little bit of the stuff and only at 22 calories max. If we went up his poops went south no matter how many enzymes we gave. I think there is a point where too much fat and protein from formula will just taxed their tiny recovering systems and it show no benefits (my nutritionist actually agreed with this theory...I asked why they do it and she said she wasn't sure). The best thing we did was add a probiotic (acidophilus) to his applesauce everyday. Culterelle is good but we switched to KidDophilus because he can't handle any dairy. THis helped build the gut flora and reduce inflammation. After about 6-8 weeks of helping the gut to heal, he gained. We slowly weaned off the formula and he eventually kept climbing the charts. When he was introduced to solids around 6 months, we would add a tiny bit of MCT (melted virgin coconut oil is also great and is medium chain fats; it also helps gut flora) to his rice cereal and fruits/veggies, but we went really slow so we could adjust enzymes if needed. Too much oil will also go right through if the gut can't handle it.

Perhaps a strategy to discuss with them is to work on establishing gut flora with probiotics, reducing calories (getting the extra MCT out for a short time) until some absorption is seen (stools begin to normalize). Then if he can handle it, slowly go up to maybe 24 cal. This weight thing isn't an over night thing and in my experience takes many months for all the systems to normalize from being malnourished.

Hang in there. Slow and steady does it.
 

bengismom

New member
Thanks for the info on the calories and mct oils. Mabey he is on to many things at one time,oils,calories(34cal total)with continued feeds through his g tube.This is really hard to go through they are talkin about sending us home with hospice,He does not seem to get any better.But with the info you just gave me, IT MIGHT SAVE MY SONS LIFE at least for now...................thanks..................So your babys name is ben too.....how cute.Its weird he cannot handel dairy either.CF is really tricky its so diffrent in many people.But with hope mabey their is hope for our babies in the future. Again thank you........................................
 

bengismom

New member
Thanks for the info on the calories and mct oils. Mabey he is on to many things at one time,oils,calories(34cal total)with continued feeds through his g tube.This is really hard to go through they are talkin about sending us home with hospice,He does not seem to get any better.But with the info you just gave me, IT MIGHT SAVE MY SONS LIFE at least for now...................thanks..................So your babys name is ben too.....how cute.Its weird he cannot handel dairy either.CF is really tricky its so diffrent in many people.But with hope mabey their is hope for our babies in the future. Again thank you........................................
 

bengismom

New member
Thanks for the info on the calories and mct oils. Mabey he is on to many things at one time,oils,calories(34cal total)with continued feeds through his g tube.This is really hard to go through they are talkin about sending us home with hospice,He does not seem to get any better.But with the info you just gave me, IT MIGHT SAVE MY SONS LIFE at least for now...................thanks..................So your babys name is ben too.....how cute.Its weird he cannot handel dairy either.CF is really tricky its so diffrent in many people.But with hope mabey their is hope for our babies in the future. Again thank you........................................
 

concernedmom

New member
bengismom, I'm so sorry about your son. He's so young. It just seems like there should be something they can do besides send you home with hospice. I'm so sorry. I HATE THIS DISEASE!
 

concernedmom

New member
bengismom, I'm so sorry about your son. He's so young. It just seems like there should be something they can do besides send you home with hospice. I'm so sorry. I HATE THIS DISEASE!
 

concernedmom

New member
bengismom, I'm so sorry about your son. He's so young. It just seems like there should be something they can do besides send you home with hospice. I'm so sorry. I HATE THIS DISEASE!
 

bengismom

New member
I know that its hard to hear that hospice is whats gonna happen but i guess he will be comfortable its so sad hes only 8 months old but everyday i have him is a blessing he is the sweetest baby but he is in gods hands now just please say prayers for him i will fight till the end for my baby if you can listen to the song (IN THE ARMS OF AN ANGEL)i cry when i hear it well im gonna go check on him now so thanks i will keep an update as much as i can .................(god bless)
 

bengismom

New member
I know that its hard to hear that hospice is whats gonna happen but i guess he will be comfortable its so sad hes only 8 months old but everyday i have him is a blessing he is the sweetest baby but he is in gods hands now just please say prayers for him i will fight till the end for my baby if you can listen to the song (IN THE ARMS OF AN ANGEL)i cry when i hear it well im gonna go check on him now so thanks i will keep an update as much as i can .................(god bless)
 

bengismom

New member
I know that its hard to hear that hospice is whats gonna happen but i guess he will be comfortable its so sad hes only 8 months old but everyday i have him is a blessing he is the sweetest baby but he is in gods hands now just please say prayers for him i will fight till the end for my baby if you can listen to the song (IN THE ARMS OF AN ANGEL)i cry when i hear it well im gonna go check on him now so thanks i will keep an update as much as i can .................(god bless)
 

jena

New member
Yes, I agree with trying the probiotic. We used Culturelle with my son when he was 3. That builds up the good bacteria in the intestine. But he also used a special antibiotic (for a week) to kill off the bad bacteria in the intestine. It was Flagyl and requires a prescription. See what your doctor thinks. It could make a big difference. It did with my son (diagnosed at age 3, even after starting enzymes saw little intestinal improvement until we did this).

See what your doctor says. Flat out ask him for the prescription. You can get the Culturelle yourself over the counter.

Good luck... keep us posted!
Jena
 

jena

New member
Yes, I agree with trying the probiotic. We used Culturelle with my son when he was 3. That builds up the good bacteria in the intestine. But he also used a special antibiotic (for a week) to kill off the bad bacteria in the intestine. It was Flagyl and requires a prescription. See what your doctor thinks. It could make a big difference. It did with my son (diagnosed at age 3, even after starting enzymes saw little intestinal improvement until we did this).

See what your doctor says. Flat out ask him for the prescription. You can get the Culturelle yourself over the counter.

Good luck... keep us posted!
Jena
 

jena

New member
Yes, I agree with trying the probiotic. We used Culturelle with my son when he was 3. That builds up the good bacteria in the intestine. But he also used a special antibiotic (for a week) to kill off the bad bacteria in the intestine. It was Flagyl and requires a prescription. See what your doctor thinks. It could make a big difference. It did with my son (diagnosed at age 3, even after starting enzymes saw little intestinal improvement until we did this).

See what your doctor says. Flat out ask him for the prescription. You can get the Culturelle yourself over the counter.

Good luck... keep us posted!
Jena
 

Ratatosk

Administrator
Staff member
I'm so sorry to hear about your little guy. What type of digestive enzymes is he on and how much does he get. The reason I ask is one of our doctors told us that the local hospital just uses generic enzymes. I also seem to recall another parent on here who was having difficulty getting their child diagnosed, had meconium illeus, but they hadn't started enzymes....
 

Ratatosk

Administrator
Staff member
I'm so sorry to hear about your little guy. What type of digestive enzymes is he on and how much does he get. The reason I ask is one of our doctors told us that the local hospital just uses generic enzymes. I also seem to recall another parent on here who was having difficulty getting their child diagnosed, had meconium illeus, but they hadn't started enzymes....
 

Ratatosk

Administrator
Staff member
I'm so sorry to hear about your little guy. What type of digestive enzymes is he on and how much does he get. The reason I ask is one of our doctors told us that the local hospital just uses generic enzymes. I also seem to recall another parent on here who was having difficulty getting their child diagnosed, had meconium illeus, but they hadn't started enzymes....
 

Foody

New member
I am so sorry things are not turning around. I will send you as much prayer and positive energy as I can to your little angel right now. Ask the angels to surround and strengthen his little body and to give you any answers you may need.

Much love and strength to you during this time. Our hearts are with you.
 
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