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- Thread starter kathyvert
- Start date
CFHockeyMom
New member
Yes, 8 lbs and six months is terribly low. Feeding tubes are fairly common among CF'ers but I'm more familiar with them in the older set, not so much in infants. However, it does seem directionally correct given his low weight.
Has he been eating well and not gaining weight? If he's eating well and not gaining then a feeding tube probably won't make much difference and the Dr. needs to look further into possible causes.
Just curious what's his enzyme dosage?
Has he been eating well and not gaining weight? If he's eating well and not gaining then a feeding tube probably won't make much difference and the Dr. needs to look further into possible causes.
Just curious what's his enzyme dosage?
thefrogprincess
New member
Diabetes is common in CF since the pancrease is affected anyway, however you don't hear about it as much in infants. It could explain why he isn't gaining though so its worth checking out. My brother, who also has CF, had a feeding tube as an infant, because he was very sick. He was able to have it taken out before he was a year old. It could really help him catch up to where he needs to be. Keep us posted, and good luck.
CFHockeyMom
New member
It can be rough for the first couple of years. The first year especially. My son was in horrible shape before he was diagnosed. Even after the diagnosis, he was in and out of the hospital quite a bit but it got better. He's 8 (and a half, as he would say) and doing quite well. He's missed less school than my 11 year old that doesn't have CF. He plays hockey and in general is in pretty good health. He's small for his age but we can deal with that.
CF can be devistating to a family. We did our share of mourning the loss of our dreams for our new son. For the first year of his life all I saw in him was CF but things settled down and CF took a back seat. I know there will come a time when CF is back in the fore front but I'm just enjoying the here and now - even when he's arguing with me about homework.
CF has made him who he is. He's strong. I'm proud of him and amazed by him. I've learned a lot from him, including how strong I am and that even when things are at their worst, some good can be found.
CF can be devistating to a family. We did our share of mourning the loss of our dreams for our new son. For the first year of his life all I saw in him was CF but things settled down and CF took a back seat. I know there will come a time when CF is back in the fore front but I'm just enjoying the here and now - even when he's arguing with me about homework.
CF has made him who he is. He's strong. I'm proud of him and amazed by him. I've learned a lot from him, including how strong I am and that even when things are at their worst, some good can be found.
Just register again using a different login name, make sure u write it in the box titled 'username'
Im 17 and have a g-tube. Ive benn having feeds like that since I was 2 and a half. I started off with a nasal gastric tube (ng tube) and got the g-tube in my stomach when I was 5. I remeber my mum saying how much of a difference it was when I got a tube.
Like cf hockey mom said, it can be rough for the first coulpe of years. I was quite sick when I was diagnosed (at 6 and half mths) with failure to thrive and I think chest infections. But once the treatment kicked in I got better,
Best wishes,
Shamrock, x
Im 17 and have a g-tube. Ive benn having feeds like that since I was 2 and a half. I started off with a nasal gastric tube (ng tube) and got the g-tube in my stomach when I was 5. I remeber my mum saying how much of a difference it was when I got a tube.
Like cf hockey mom said, it can be rough for the first coulpe of years. I was quite sick when I was diagnosed (at 6 and half mths) with failure to thrive and I think chest infections. But once the treatment kicked in I got better,
Best wishes,
Shamrock, x
NoDayButToday
New member
I have a G Tube (specifically, a bard button), and it isn't highly unusual. If he isn't gaining weight, have they tried switching formulas? enzymes? Have they looked into the diabetes further-- having CFRD can hinder gaining weight since high blood sugar can lead to 'spilling' your calories in urine. If I were your family, I would insist on the diabetes being looked into more before putting the baby through surgery. Good luck <img src="i/expressions/face-icon-small-smile.gif" border="0">
Purplelungs
New member
I have hypoglycimia. Its basically you have low blood sugar. But insulin works good. I have to make sure I eat every couple of hours so my sugar doesnt get low. I dont know how you would do this in a baby. I dont even think what I do is medically correct but it works. It maybe that say he gets fed every 2 hours he may need to eat every hour...or hour and half. Its more of a trail by error thing. The doctors may have a better idea of what to do. Im more of the kind to go ahead and get the feeding tube especially at that age and that low....because they can do a tube and then when he gains tapper off the tube feeding to see if he can eat and gain on his own then remove it later. They will get things figured out and deal with it soon and with the best they think will be.
NoDayButToday
New member
Isn't insulin for HIGH blood sugar? In hypoglycemia, wouldn't a glucose product be used to raise the sugars (if food isn't doing the job alone)?
Dear Grandma Smith,
I'm very sorry for your situation. I know my mother suffers terribly everytime my daughter Samantha is sick or in the hospital.
My daughter had her g-tube put in at about 15 mths of age. She also had/ and still has trouble gaining weight despite enzymes and the g-tube. A few things that you might want to pass along to your son:
How is the baby's respiration? Samantha was always breathing fast and retracting (you'll see her rib cage contracting with each breath/or notice a retraction at the base of the neck with each breath), even when she was four or five months old. If a baby is working so hard to breathe, they are burning up a lot of calories.
How many stools does the baby have a day? If the baby is stooling a lot (more than five times a day) then the enzymes might need to be adjusted or changed.
Have they tested for acid reflux? Reflux can cause a lot of problems - aspiration of food into the lungs, and often aversion to feeding. Samantha is two now and still rarely eats solid foods.
The feeding tube is initially scary, but in time it becomes very routine. Samantha calls it her "tubie-tube" and will lift her shirt to show anyone willing to look!
You are right, for some, CF is a dreadful disease. But I can tell you from personal experience that your grandchild will grow to be an inspiration to the family. Children with CF are amazing. Please feel free to ask me any questions.
Maria (mother of three daughters, the youngest, Samantha w/cf)
I'm very sorry for your situation. I know my mother suffers terribly everytime my daughter Samantha is sick or in the hospital.
My daughter had her g-tube put in at about 15 mths of age. She also had/ and still has trouble gaining weight despite enzymes and the g-tube. A few things that you might want to pass along to your son:
How is the baby's respiration? Samantha was always breathing fast and retracting (you'll see her rib cage contracting with each breath/or notice a retraction at the base of the neck with each breath), even when she was four or five months old. If a baby is working so hard to breathe, they are burning up a lot of calories.
How many stools does the baby have a day? If the baby is stooling a lot (more than five times a day) then the enzymes might need to be adjusted or changed.
Have they tested for acid reflux? Reflux can cause a lot of problems - aspiration of food into the lungs, and often aversion to feeding. Samantha is two now and still rarely eats solid foods.
The feeding tube is initially scary, but in time it becomes very routine. Samantha calls it her "tubie-tube" and will lift her shirt to show anyone willing to look!
You are right, for some, CF is a dreadful disease. But I can tell you from personal experience that your grandchild will grow to be an inspiration to the family. Children with CF are amazing. Please feel free to ask me any questions.
Maria (mother of three daughters, the youngest, Samantha w/cf)
Purplelungs
New member
Ok sorry for the confusion in my last post. I meant it this way...Hypoglycimia is LOW blood sugar but the insulin works well in the body. Where as diabetes is HIGH blood sugar and insulin doesnt work, get transported properly in some cases insulin isnt even developed. Sorry for my grammical errors, they confuse people alot. Actually I dont really know much about insulin...just told that in hypoglycimia insulin in the body is fine and a person with hypo has low blood sugar.
NoDayButToday
New member
No problem Purple. I interpreted it as insulin works good to treat your hypoglycemia and I was like "That doeesn't sound right" but I wasn't sure so I just asked... <img src="i/expressions/face-icon-small-smile.gif" border="0">