growth hormone vs. tube feedings?

J

JRPandTJP

New member
Our son was dx at 3 1/2 months after malabsorption issues ranging from vitamin K deficiency at 7 weeks old to protein and zinc deficiencies after that. He was a mess and wasn't able to keep down anything much less absorb it. He was breastfed as well (something I had to fight for after he was diagnosed) and placed on an NG feeding tube temporarily to boost his weight in the beginning... he wasn't on the charts either. He is 2 now and off his reflux and liver meds, in the 50% for weight, and has no lung issues thus far. We are agressive with nutrition and supplements with help with inflammation and digestion.

I would say this, no matter how it presents itself, malabsorption of nutrients causes the body a lot of stress. It can take a while for the body to adjust to being nurished again. I say that once he got enzymes, his liver and digestive tract healed from the inflammation and reflux, it took about 6 months for him to even out. He was gaining but until this point it was a bit slow. Each month after that got easier and his appetite came on stronger. I believe some children, especially with reflux, may have associated food with pain more than we imagine. Once they realize it doesn't hurt to eat anymore...things improve (but slowly).

I would give her some time. If you feel an NG would help boost her a bit for a month or so (maybe night feeds) then maybe discuss it with her doctors. I believe you are entitled to as many opinions as you wish and if a doctor is uncomfortable with that too DA** bad! If they are good and confident in there care then they should welcome it. G-tubes and growth hormones, I would try other things before trying these options if at all possible.

There are some natural ways to help with inflammation of the gut and may help with absorption. PM me if you need some resources on probiotics, DHA, or other natural supportive things.

Warmly,
 
G

gr33nie

New member
Thanks very much Jody.

I actually posted this in September and I'm happy to say that Eli is doing much better now. We were able to dodge the g-tube as his eating aversions have mostly vanished. He has gone from WAY off the charts to the 11th percentile in weight and hopefully still climbing.

We are still working on trying to get his reflux under control. Right now he is taking 2ml of zantac 3/day but he still spits up and seems to be refluxing during meals sometimes.

As far as natural remedies we give him culterelle in his applesauce 1/day but I'd love to hear more information on other natural supportive things and I am not sure what DHA is so I'd love to hear about that as well.

Thanks!
Sarah
 
G

gr33nie

New member
Thanks very much Jody.

I actually posted this in September and I'm happy to say that Eli is doing much better now. We were able to dodge the g-tube as his eating aversions have mostly vanished. He has gone from WAY off the charts to the 11th percentile in weight and hopefully still climbing.

We are still working on trying to get his reflux under control. Right now he is taking 2ml of zantac 3/day but he still spits up and seems to be refluxing during meals sometimes.

As far as natural remedies we give him culterelle in his applesauce 1/day but I'd love to hear more information on other natural supportive things and I am not sure what DHA is so I'd love to hear about that as well.

Thanks!
Sarah
 
G

gr33nie

New member
Thanks very much Jody.

I actually posted this in September and I'm happy to say that Eli is doing much better now. We were able to dodge the g-tube as his eating aversions have mostly vanished. He has gone from WAY off the charts to the 11th percentile in weight and hopefully still climbing.

We are still working on trying to get his reflux under control. Right now he is taking 2ml of zantac 3/day but he still spits up and seems to be refluxing during meals sometimes.

As far as natural remedies we give him culterelle in his applesauce 1/day but I'd love to hear more information on other natural supportive things and I am not sure what DHA is so I'd love to hear about that as well.

Thanks!
Sarah
 
J

JRPandTJP

New member
Our son was on an antacid as well for first 15-18 months or so. However, I feel as he got closer to 2 his reflux just changed enough to take him off the meds. We did this slowly and had to go back to it a couple of times if we saw his enzymes were not working as well. Eventually I think we added a bit of chelated magnesium (gradually) until we didn't need the prescription anymore. Then we didn't really need the magnesium on a daily basis either (after 2). We use magnesium now only when he seems acidic (like when teething or ill).

There is a yahoo group called CF Nutrition and one called Crataegus and I believe quite a few moms have used magnesium to help with acidity/reflux. You could ask them their experience. I believe some have noticed simply adding some Epson salts to the bath helps as well.

Just some ideas. I have some articles and resources on my site below on DHA/Omega 3 if you wish to read more about that as well.
 
J

JRPandTJP

New member
Our son was on an antacid as well for first 15-18 months or so. However, I feel as he got closer to 2 his reflux just changed enough to take him off the meds. We did this slowly and had to go back to it a couple of times if we saw his enzymes were not working as well. Eventually I think we added a bit of chelated magnesium (gradually) until we didn't need the prescription anymore. Then we didn't really need the magnesium on a daily basis either (after 2). We use magnesium now only when he seems acidic (like when teething or ill).

There is a yahoo group called CF Nutrition and one called Crataegus and I believe quite a few moms have used magnesium to help with acidity/reflux. You could ask them their experience. I believe some have noticed simply adding some Epson salts to the bath helps as well.

Just some ideas. I have some articles and resources on my site below on DHA/Omega 3 if you wish to read more about that as well.
 
J

JRPandTJP

New member
Our son was on an antacid as well for first 15-18 months or so. However, I feel as he got closer to 2 his reflux just changed enough to take him off the meds. We did this slowly and had to go back to it a couple of times if we saw his enzymes were not working as well. Eventually I think we added a bit of chelated magnesium (gradually) until we didn't need the prescription anymore. Then we didn't really need the magnesium on a daily basis either (after 2). We use magnesium now only when he seems acidic (like when teething or ill).

There is a yahoo group called CF Nutrition and one called Crataegus and I believe quite a few moms have used magnesium to help with acidity/reflux. You could ask them their experience. I believe some have noticed simply adding some Epson salts to the bath helps as well.

Just some ideas. I have some articles and resources on my site below on DHA/Omega 3 if you wish to read more about that as well.
 
T

thefrogprincess

New member
Usually kids with CF don't present hormone problems, at least that I know of. The problem is malnourishment. Without prpper nutrition a kid just can't grow. Obviously consult with your doctors but a feeding tube might be a good route if he can't gain on his own. My brother (who also has CF) turned into the pickiest eater I have ever seen when we were kids. Finally when he was in the 5th grade my parents took him in and had a gastrostomy placed because he was far below where he should of been for height and weight. With the g-tube it was like magic. He packed on weight and grew like never before. He was literally starving to death because he wouldn't eat. It took a lot of stress off of my parents too and dinner time at our house was a lot more tolerable without the constant fighting to get him to eat something. Good luck.
 
T

thefrogprincess

New member
Usually kids with CF don't present hormone problems, at least that I know of. The problem is malnourishment. Without prpper nutrition a kid just can't grow. Obviously consult with your doctors but a feeding tube might be a good route if he can't gain on his own. My brother (who also has CF) turned into the pickiest eater I have ever seen when we were kids. Finally when he was in the 5th grade my parents took him in and had a gastrostomy placed because he was far below where he should of been for height and weight. With the g-tube it was like magic. He packed on weight and grew like never before. He was literally starving to death because he wouldn't eat. It took a lot of stress off of my parents too and dinner time at our house was a lot more tolerable without the constant fighting to get him to eat something. Good luck.
 
T

thefrogprincess

New member
Usually kids with CF don't present hormone problems, at least that I know of. The problem is malnourishment. Without prpper nutrition a kid just can't grow. Obviously consult with your doctors but a feeding tube might be a good route if he can't gain on his own. My brother (who also has CF) turned into the pickiest eater I have ever seen when we were kids. Finally when he was in the 5th grade my parents took him in and had a gastrostomy placed because he was far below where he should of been for height and weight. With the g-tube it was like magic. He packed on weight and grew like never before. He was literally starving to death because he wouldn't eat. It took a lot of stress off of my parents too and dinner time at our house was a lot more tolerable without the constant fighting to get him to eat something. Good luck.
 
T

thefrogprincess

New member
Usually kids with CF don't present hormone problems, at least that I know of. The problem is malnourishment. Without prpper nutrition a kid just can't grow. Obviously consult with your doctors but a feeding tube might be a good route if he can't gain on his own. My brother (who also has CF) turned into the pickiest eater I have ever seen when we were kids. Finally when he was in the 5th grade my parents took him in and had a gastrostomy placed because he was far below where he should of been for height and weight. With the g-tube it was like magic. He packed on weight and grew like never before. He was literally starving to death because he wouldn't eat. It took a lot of stress off of my parents too and dinner time at our house was a lot more tolerable without the constant fighting to get him to eat something. Good luck.
 
T

thefrogprincess

New member
Usually kids with CF don't present hormone problems, at least that I know of. The problem is malnourishment. Without prpper nutrition a kid just can't grow. Obviously consult with your doctors but a feeding tube might be a good route if he can't gain on his own. My brother (who also has CF) turned into the pickiest eater I have ever seen when we were kids. Finally when he was in the 5th grade my parents took him in and had a gastrostomy placed because he was far below where he should of been for height and weight. With the g-tube it was like magic. He packed on weight and grew like never before. He was literally starving to death because he wouldn't eat. It took a lot of stress off of my parents too and dinner time at our house was a lot more tolerable without the constant fighting to get him to eat something. Good luck.
 
T

thefrogprincess

New member
Usually kids with CF don't present hormone problems, at least that I know of. The problem is malnourishment. Without prpper nutrition a kid just can't grow. Obviously consult with your doctors but a feeding tube might be a good route if he can't gain on his own. My brother (who also has CF) turned into the pickiest eater I have ever seen when we were kids. Finally when he was in the 5th grade my parents took him in and had a gastrostomy placed because he was far below where he should of been for height and weight. With the g-tube it was like magic. He packed on weight and grew like never before. He was literally starving to death because he wouldn't eat. It took a lot of stress off of my parents too and dinner time at our house was a lot more tolerable without the constant fighting to get him to eat something. Good luck.
 
T

thefrogprincess

New member
Usually kids with CF don't present hormone problems, at least that I know of. The problem is malnourishment. Without prpper nutrition a kid just can't grow. Obviously consult with your doctors but a feeding tube might be a good route if he can't gain on his own. My brother (who also has CF) turned into the pickiest eater I have ever seen when we were kids. Finally when he was in the 5th grade my parents took him in and had a gastrostomy placed because he was far below where he should of been for height and weight. With the g-tube it was like magic. He packed on weight and grew like never before. He was literally starving to death because he wouldn't eat. It took a lot of stress off of my parents too and dinner time at our house was a lot more tolerable without the constant fighting to get him to eat something. Good luck.
 
T

thefrogprincess

New member
Usually kids with CF don't present hormone problems, at least that I know of. The problem is malnourishment. Without prpper nutrition a kid just can't grow. Obviously consult with your doctors but a feeding tube might be a good route if he can't gain on his own. My brother (who also has CF) turned into the pickiest eater I have ever seen when we were kids. Finally when he was in the 5th grade my parents took him in and had a gastrostomy placed because he was far below where he should of been for height and weight. With the g-tube it was like magic. He packed on weight and grew like never before. He was literally starving to death because he wouldn't eat. It took a lot of stress off of my parents too and dinner time at our house was a lot more tolerable without the constant fighting to get him to eat something. Good luck.
 
T

thefrogprincess

New member
Usually kids with CF don't present hormone problems, at least that I know of. The problem is malnourishment. Without prpper nutrition a kid just can't grow. Obviously consult with your doctors but a feeding tube might be a good route if he can't gain on his own. My brother (who also has CF) turned into the pickiest eater I have ever seen when we were kids. Finally when he was in the 5th grade my parents took him in and had a gastrostomy placed because he was far below where he should of been for height and weight. With the g-tube it was like magic. He packed on weight and grew like never before. He was literally starving to death because he wouldn't eat. It took a lot of stress off of my parents too and dinner time at our house was a lot more tolerable without the constant fighting to get him to eat something. Good luck.
 
T

thefrogprincess

New member
Usually kids with CF don't present hormone problems, at least that I know of. The problem is malnourishment. Without prpper nutrition a kid just can't grow. Obviously consult with your doctors but a feeding tube might be a good route if he can't gain on his own. My brother (who also has CF) turned into the pickiest eater I have ever seen when we were kids. Finally when he was in the 5th grade my parents took him in and had a gastrostomy placed because he was far below where he should of been for height and weight. With the g-tube it was like magic. He packed on weight and grew like never before. He was literally starving to death because he wouldn't eat. It took a lot of stress off of my parents too and dinner time at our house was a lot more tolerable without the constant fighting to get him to eat something. Good luck.
 
T

thefrogprincess

New member
Usually kids with CF don't present hormone problems, at least that I know of. The problem is malnourishment. Without prpper nutrition a kid just can't grow. Obviously consult with your doctors but a feeding tube might be a good route if he can't gain on his own. My brother (who also has CF) turned into the pickiest eater I have ever seen when we were kids. Finally when he was in the 5th grade my parents took him in and had a gastrostomy placed because he was far below where he should of been for height and weight. With the g-tube it was like magic. He packed on weight and grew like never before. He was literally starving to death because he wouldn't eat. It took a lot of stress off of my parents too and dinner time at our house was a lot more tolerable without the constant fighting to get him to eat something. Good luck.
 
T

thefrogprincess

New member
Usually kids with CF don't present hormone problems, at least that I know of. The problem is malnourishment. Without prpper nutrition a kid just can't grow. Obviously consult with your doctors but a feeding tube might be a good route if he can't gain on his own. My brother (who also has CF) turned into the pickiest eater I have ever seen when we were kids. Finally when he was in the 5th grade my parents took him in and had a gastrostomy placed because he was far below where he should of been for height and weight. With the g-tube it was like magic. He packed on weight and grew like never before. He was literally starving to death because he wouldn't eat. It took a lot of stress off of my parents too and dinner time at our house was a lot more tolerable without the constant fighting to get him to eat something. Good luck.
 
T

thefrogprincess

New member
Usually kids with CF don't present hormone problems, at least that I know of. The problem is malnourishment. Without prpper nutrition a kid just can't grow. Obviously consult with your doctors but a feeding tube might be a good route if he can't gain on his own. My brother (who also has CF) turned into the pickiest eater I have ever seen when we were kids. Finally when he was in the 5th grade my parents took him in and had a gastrostomy placed because he was far below where he should of been for height and weight. With the g-tube it was like magic. He packed on weight and grew like never before. He was literally starving to death because he wouldn't eat. It took a lot of stress off of my parents too and dinner time at our house was a lot more tolerable without the constant fighting to get him to eat something. Good luck.
 
You must log in or register to reply here.
Top