advice from others with similar problems needed

[jenniferp]

Andrew is having problems ranging from A to Z, I feel so overwhelmed and like doctors don't know much more than me.
He is six months old, he also has cerebral palsy which really complicates things. He has a g-tube, and doesn't take much if any formula (pregestimil) by mouth. He is on a 20 hour a day continuous feed. He spits up a whole bunch. Enzymes have been a major issue, because they wouldn't go through his tube. Finally, they have given him viocase powdered enzymes which do go through the tube. However, I have noticed since I started giving them to him he spits up little black specs, kinda looks like dirt and he has been very fussy, I've had to decrease his feedings a bit because he does not tolerate them well. He is not gaining weight well, he weighed 12 lbs 4 ozs at his last visit, actually lost a pound. He is taking prevacid, zantac and reglan the highest doses he can.
His poop is very runny, and I haven't noticed any change in it since starting these new enzymes. Is this normal? Did anyone have a child with these problems and they resolved themselves over time? I feel like this will last forever, and its stressfull.

 

[jenniferp]

Andrew is having problems ranging from A to Z, I feel so overwhelmed and like doctors don't know much more than me.
He is six months old, he also has cerebral palsy which really complicates things. He has a g-tube, and doesn't take much if any formula (pregestimil) by mouth. He is on a 20 hour a day continuous feed. He spits up a whole bunch. Enzymes have been a major issue, because they wouldn't go through his tube. Finally, they have given him viocase powdered enzymes which do go through the tube. However, I have noticed since I started giving them to him he spits up little black specs, kinda looks like dirt and he has been very fussy, I've had to decrease his feedings a bit because he does not tolerate them well. He is not gaining weight well, he weighed 12 lbs 4 ozs at his last visit, actually lost a pound. He is taking prevacid, zantac and reglan the highest doses he can.
His poop is very runny, and I haven't noticed any change in it since starting these new enzymes. Is this normal? Did anyone have a child with these problems and they resolved themselves over time? I feel like this will last forever, and its stressfull.

 

[anonymous]

I don't have experience with a feeding tube, but do recall DS before he was a year old and the constant runny poo -- smelled like feta cheese, spit up, bottle aversion. He was born with a bowel obstruction and we just always figured he associated eating with pain. He hated pregistimil, so he was put on regular formula 27kcal (more powder to water ratio). Because of his bottle feeding problems in the NICU early on, they assumed he had reflux and prescribed zantac, which he was on for about a 1 1/2 years. He still spit up and sometimes there would be partial remains of enzymes -- but he's on pancrease MT4s, so the beads were bigger. He was orginally on pancreacarb and those beads were very very tiny -- like grains of sand. Could those be tried with a feeding tube?

Things did improve when he got to be a little older. We still kept him on forumula until he was 18 months old, but he gradually has expressed an interest in eating, stopped spitting up. IMO, I'd call the doctor. Especially with the flecs of stuff. Could just be enzyme powder, but wouldn't hurt to ask. Liza

 

[anonymous]

I don't have experience with a feeding tube, but do recall DS before he was a year old and the constant runny poo -- smelled like feta cheese, spit up, bottle aversion. He was born with a bowel obstruction and we just always figured he associated eating with pain. He hated pregistimil, so he was put on regular formula 27kcal (more powder to water ratio). Because of his bottle feeding problems in the NICU early on, they assumed he had reflux and prescribed zantac, which he was on for about a 1 1/2 years. He still spit up and sometimes there would be partial remains of enzymes -- but he's on pancrease MT4s, so the beads were bigger. He was orginally on pancreacarb and those beads were very very tiny -- like grains of sand. Could those be tried with a feeding tube?

Things did improve when he got to be a little older. We still kept him on forumula until he was 18 months old, but he gradually has expressed an interest in eating, stopped spitting up. IMO, I'd call the doctor. Especially with the flecs of stuff. Could just be enzyme powder, but wouldn't hurt to ask. Liza

 

[anonymous]

I really sympathize with your feeling overwhelmed and hope you find some relief talking here about it. Be sure to do a search of older posts to see if others have talked about it as well.

My child w/CF had terrible reflux until he was well over 1 year old and we pretty much had to hold him 24 hr/day for the first year just so the formula would not run out of him when we laid him down. Once he was diagnosed w/CF and put on enzymes (Creon5) and zanatc it still took several months before his bowels started showing a consistent improvement. For quite awhile he still pooped after every meal but it gradually improved in consistency. There's a learning period for getting the right dosage and it is made all the harder if the baby does not eat consistent amounts or stops/starts. You can also expect there to be periodic needs to adjust enzymes and some days to work better than others; he's 3 now and still has some bad days when his eating is too chaotic to match up with proper enzymes.

Another thing: that Reglan stuff is designed to increase the speed with which food passes through the body - the Dr. tried to prescribe it for my son a couple different times when he was still refluxy but we turned it down out of concern for the laundry list of side effects listed on the Reglan website (including diarrhea) - we just felt like we'd rather hold down the pharmaceutical load on the little guy's gut whenever we can.

You might ask if there are other formulas to try. My son drank alimentum and despite the Dr. saying most kids think it stinks, he sucked it down and put up a huge fight when we tried to convert him to milk a year later

I'd also definitely press the doctors with your concerns. I find it can be hard to stay on topic at CF clinic visits while juggling a baby so always write out my questions in advance. Don't be afraid to question the Dr. when you think the symptoms you are seeing make you think that what the Dr. is prescribing is not working.

 

[anonymous]

I really sympathize with your feeling overwhelmed and hope you find some relief talking here about it. Be sure to do a search of older posts to see if others have talked about it as well.

My child w/CF had terrible reflux until he was well over 1 year old and we pretty much had to hold him 24 hr/day for the first year just so the formula would not run out of him when we laid him down. Once he was diagnosed w/CF and put on enzymes (Creon5) and zanatc it still took several months before his bowels started showing a consistent improvement. For quite awhile he still pooped after every meal but it gradually improved in consistency. There's a learning period for getting the right dosage and it is made all the harder if the baby does not eat consistent amounts or stops/starts. You can also expect there to be periodic needs to adjust enzymes and some days to work better than others; he's 3 now and still has some bad days when his eating is too chaotic to match up with proper enzymes.

Another thing: that Reglan stuff is designed to increase the speed with which food passes through the body - the Dr. tried to prescribe it for my son a couple different times when he was still refluxy but we turned it down out of concern for the laundry list of side effects listed on the Reglan website (including diarrhea) - we just felt like we'd rather hold down the pharmaceutical load on the little guy's gut whenever we can.

You might ask if there are other formulas to try. My son drank alimentum and despite the Dr. saying most kids think it stinks, he sucked it down and put up a huge fight when we tried to convert him to milk a year later

I'd also definitely press the doctors with your concerns. I find it can be hard to stay on topic at CF clinic visits while juggling a baby so always write out my questions in advance. Don't be afraid to question the Dr. when you think the symptoms you are seeing make you think that what the Dr. is prescribing is not working.

 

[anonymous]

Hi Jenn,

I'm sorry that you are still battling with feedings and the g-tube. How much Viokase are you giving him and how are you administering it? We were told to use it originally in a manner that was completely ineffective. I had to find out the correct way on my own from contacts that I had made online.

The correct way is to mix the prescribed amount with water and then administer it by syringe into the tubing. We did this at the beginning of the feed and at the end. I have to say, though, that Sami didn't do too well using the Viokase. She had very runny (not mucousy) stools while we used the Viokase.

She is doing much better using Pancreacarb 4's that we mix with applesause and use a special syringe (I think I forwarded a picture to you once) to administer it right into her Mic-Key button. Our clinic recently gave us some extra syringes. I could send you one, if you would like.

I know this must be overwhelming for you. If you ever need someone to talk to, please e-mail me: mdgoslin@comcast.net

Maria (Sami's mom)

 

[anonymous]

Hi Jenn,

I'm sorry that you are still battling with feedings and the g-tube. How much Viokase are you giving him and how are you administering it? We were told to use it originally in a manner that was completely ineffective. I had to find out the correct way on my own from contacts that I had made online.

The correct way is to mix the prescribed amount with water and then administer it by syringe into the tubing. We did this at the beginning of the feed and at the end. I have to say, though, that Sami didn't do too well using the Viokase. She had very runny (not mucousy) stools while we used the Viokase.

She is doing much better using Pancreacarb 4's that we mix with applesause and use a special syringe (I think I forwarded a picture to you once) to administer it right into her Mic-Key button. Our clinic recently gave us some extra syringes. I could send you one, if you would like.

I know this must be overwhelming for you. If you ever need someone to talk to, please e-mail me: mdgoslin@comcast.net

Maria (Sami's mom)

 

[Jane]

Hi Jen,

You really have a lot to deal with. It is SO stressful and frustrating when doctors recommend all this stuff but don't have any idea how it all will all work in our lives. My two boys have g-tubes and I know how much work it is. I'm curious about the viocase (viokase?). Our nutritionist just recommended we try it. My boys have been taking 3 Ultrase at the beginning of the night, but nothing after the 8 hours. I was hopeful the viocase will improve their poop and help them gain some more weight. Does anyone else have info about how it works with older people?

 

[Jane]

Hi Jen,

You really have a lot to deal with. It is SO stressful and frustrating when doctors recommend all this stuff but don't have any idea how it all will all work in our lives. My two boys have g-tubes and I know how much work it is. I'm curious about the viocase (viokase?). Our nutritionist just recommended we try it. My boys have been taking 3 Ultrase at the beginning of the night, but nothing after the 8 hours. I was hopeful the viocase will improve their poop and help them gain some more weight. Does anyone else have info about how it works with older people?

 

[JazzysMom]

I took Viokase for most of the early years after dx. It was the first enzyme for me & it worked wonders. We stopped using it because my cat loved to eat them & would literally bat the bottle around trying to get it open. I know it sounds like a ridiculous reason to stop, but he knew what was in there & to put it out of reach of him made it hard for me. I was dx at 7 & took it to my teen years when I decided myself that no enzymes were needed anymore. When my doctor put me back on them in my twenties I went on Pancrease which also worked well. I am currently on Ultrase.

 

[JazzysMom]

I took Viokase for most of the early years after dx. It was the first enzyme for me & it worked wonders. We stopped using it because my cat loved to eat them & would literally bat the bottle around trying to get it open. I know it sounds like a ridiculous reason to stop, but he knew what was in there & to put it out of reach of him made it hard for me. I was dx at 7 & took it to my teen years when I decided myself that no enzymes were needed anymore. When my doctor put me back on them in my twenties I went on Pancrease which also worked well. I am currently on Ultrase.

 

[anonymous]

Our daughter had a lot of runny poops, was very fussy, and lost a pound in the two weeks after she was born. After several weeks, we finally determined that she was allergic to cow's milk and soy. She had no other symptoms. Once I stopped eating milk and soy (she was getting it through my breast milk), the runny poops slowed down and fussiness stopped and she gained weight.

It wasn't until a year and a half later that we found out she had CF. She had stopped growing again. We had assumed the runny poops she still frequently got were due to the allergy.

Anyway, something to check.

 

[eli]

Hi Jen, i'm sorry thear that baby ANDREW, and guy's are having so much to deal with. Cf is not an easy thing for both parents and chn, and you have Cerebral palsy to deal with as well. I'm praying for you guy's and i hope things begin to settle down.
I too have a prob with my dd gaining weight, and she too had runny poos. Bot with extra enzymes her poo's got better but still not too much weigh gain. She is 17mnths and is still on the 10th percentile.

Thinking of you
Eli