Bowel Movement issues

[Mama2Five]

Hi everyone!

So our baby is now 3.5 months and we're dealing with bowel movement issues that she's been experiencing since she was 3 weeks old. She poops only twice a week--on the third day. Her NP and dietitian have been watching it, recommending prune juice and at our last appt her dietitian wanted to introduce miralax. However, her NP was uncomfortable with that because she is so young so she encouraged me to continue trying to give her prune juice. Unfortunately, she just doesn't like it and won't take it.

She had an xray last month and while there was a moderate amount of stool, there was no blockages.

Since we got home from Florida last Tuesday, she has been very finicky regarding eating. The last time we were at clinic they thought she might not be eating alot because she doesn't stool often, and I'm in agreement. But she has REALLY been rejecting her feedings the past 48 hours, barely doing 4 oz over longer stretches of time. However, he behavior is the same as usual--she's cheery, active and napping regularly. I thought it was possible she picked up a stomach bug that was going around while we were in Florida, but there's no diarrhea or vomiting and said behavior leads me to believe different.

I guess my question is, What's normal here? I googled this topic and some old threads came up, but can anyone give me some input?

I'm thinking about calling into the clinic tomorrow. I'm just concerned she's not eating enough (which is true; she's not gaining as much as she should so they have me mixing high calorie formula), and the movements only happening every 3 days has NEVER sat well with me. Is this a symptom of CF? Her fecal elastase came back normal and she's PS.

Thanks!

 

[Aboveallislove]

Hello Mom,
We has similar issues with our DS, although he didn't go that long between BM, but the eating was always a sign things weren't moving and unfortunately we didn't realize and while happy and cheery (albeit with lots of acid reflux), we didn't realize stuff was getting backed up and ended up in hospital with DIOS after over a year of this. This is what I would recommend:
1) Calling clinic and saying concerned because of food and seeing if they can do a flat belly xray to see if there is something going on. I know xrays aren't something you want all the time, but this is really the only way to know
2) I would cut back on the high calorie formula because that can actually constipate as can ones with added fiber. For us, the eating was the "clue" something was going on as well.
3) We gave enzymes in prune puree (and still do). That was actually the only food our son liked and it was great to add some prunes. They have an apple/prune mix too if she tolerates that better. Or what we do is mix pears and prunes because the pears actually seem to help with keeping stools going as well.
4) I'd ask the nurse practitioner to speak with a GI who works with CFers re the miralax because while I understand the hesitants to give tiny ones stuff, with CF sometimes miralax is needed daily to keep problems from building up. (I'm assuming you are talking to the CF clinic? The CF clinic should have GIs they use for their patients.)
5) I'd also ask about doing a fleet enima.

Hang in there and I am so sorry for this added worry.
Hugs and prayres,
Love

 

[Rebjane]

Hi there,

It's been a while since my daughter was a baby, she's almost 12 now but she does have GI issues so I'll take a stab.

I would definitely call the CF clinic as Aboveallislove stated. They may want to do an X-ray.

I breastfed my CF daughter(I have never formula fed so someone else may need to pipe in here) but she pooped at least 4 times a day at that age. She also took pancreatic enzymes with every nursing session( my daughter is VERY pancreatic insufficient) . Breastmilk does have a natural laxative effect(not sure if you are supplementing with high cal formula and breastmilk)

As far as the Miralax, I do not know the answer. I do know that CF babies children take things that we do not usually give babies/children. We have to weigh risk vs. benefit.

Another thought, does that high cal formula have added iron? That can be very constipating whether one has CF or not.

As a side note, my daughter with CF Gi system is very sensitive. Traveling seems to get her constipated as well.

Just also wanted to add that my daughter does use Miralax as a child...She takes it 2x day, everyday this was a recent adjustment due to a major constipation episode requiring a hospitalization.

I just do not know what the dosage would be for a small baby but it is certainly something a doctor should know so call. If the NP is not comfortable, I would ask to speak to someone who IS comfortable dealing with this situation.

 

[Mama2Five]

She is exclusively formula fed-She is on Alimentum, which is a hypoallergenic formula. We only started mixing the formula high caloric last month, so I know that that's not the reason behind all this (although I'm sure it's a contributing factor now!).

Thank you both for the advice, I will call today. It's just really frustrating being in the "not knowing" stage and having problems like this--not knowing if it is a sign/symptom of CF or just normal baby issues and what to do about it.

Oh and yes, I'm talking about the CF clinic when I say "clinic".

 

[Ratatosk]

The poop issue was one of the things that drove me the most nuts when DS was a baby. What did normal poop look like, how often should he be pooping... DS was a horrible eater and we used extra calorie formula. They had us switch to Pregistimil (predigested) formula when he was diagnosed, but he HATED it. Smelled awful. Tasted the way roadkill smells and vomit. His poop was well formed, but grass green. We switched to infamil lipid extra calories (more powder to water ratio) because he was still terrible about eating. From time to time his belly would become distended and he'd eat even less. Xrays showed he was full of stool -- not a blockage. So we were instructed to give him milk of magnesia to clean him out. First time he was about 4 months old. So off and on that first year we'd give him cherry milk of mag. Milk of magnesia and miralax work by drawing water out the tissues in the large intestine to get things moving. I also tried giving him prune juice and prunes but it didn't work for him. In between feedings if we were out and about, I'd give him babyfood white grape juice and fruit -- pears, peaches, pineapple delight. Extra calories, didn't need enzymes and would help to keep things moving.

 

[lauryn.tubes]

Mama2five, I don't mean to hijack your post but I have a similar question.

My daughter also is dx w/ CRMS right now. She cultured pseudomonas and is on Tobi 2x/day w/ CPTs twice a day. I was looking over her CF chart and noticed they put "poor weight gain" as a current problem/diagnosis. She had a fecal eslastse done when she was about 2 months old and came back VERY PS. But she's actually lost a little weight and i can see her pulmologist getting a little worried.

At daycare, her provider said "her milk just runs right through her!" and it is extremely runny every time and she goes about 4 times a day. Her intake has been down, I just can't seem to get her to drink her formula but she does like to eat solid food. She's also really congested which leads me to think that's why she's rejecting the bottle.

So CF mamas can you help educate me please?? Is increased BMs a side effect of Tobi and I should just chill out on the worry bus or can she really switch to PI within a matter of months?

 

[Ratatosk]

Tobi shouldn't affect stools. DS has been on it forever and no issues. He'd have very loose liquid stools when he was put on oral Augmentin for sinus and ear infections and Cipro when he had a exacerbation at age 4. And sometimes if he was teething. IMO I'd see about having the fecal elastase test run again. With DS mutation he's pancreatic insufficient, but at this point his pancrease still has SOME functionality.

 

[Tnjackson2]

Hi all, my son is 2.5 months now, but his BM issues are more that it's more often, and it seems too frequent to me. It's about 4 times a day now, where it was 2 a few weeks ago. I get so tired of being obsessed with the poop and frequency and is it too oily, but I can't help it! He's severely pancreatic insuff, so the NP and dietician agree to continue upping his enzymes. He's also on the high caloric formula which we started last month. He has only been constipated for about a couple days since he's been born. We put some rice cereal in with his formula which his regular pediatrician recommended due to his spitting up, right before he was diagnosed cf. So the constip. may have been combo of rice cereal + just starting enzymes so he was actually absorbing nutrients and getting backed up. Anyhow, I always ask at our clinic day what is a normal amount for a cf'er to poop a day, and they just tell me it's individual, and we have to find our son's baseline.

Mama2Five, I've been interested in trying Alimentum for my son due to his spitting up issues, arching his back, crying during feeding. The NP says it's acid reflux, but I wonder if maybe it's some sensitivity to the milk since I've read many cf'ers have that issue. The NP's recommendation was to start Prevacid, which we have, but I just didn't want him to have to get "hooked" on that for so long if maybe switching the formula to Alimentum might help the spit up issues/arching back and seeming in pain. If I may ask, did your NP or doctor recommend Alimentum, and why did you choose that formula? Our NP is very "stick to the CF regimen" which is milk based formula. Does anybody else have thoughts on Alimentum whether it helped your child or why you started them on that?

 

[Aboveallislove]

Tnjackson,
is your son on zantac and or Prilosac or Prevacid? Cf causes acid reflux because from my understanding the bivarbonit s can't get out of the pancreas. And the acid blockers help the enzymes work properly. Our so. Was on one of those milk free formula type can't remember name and frankly it didn't help but that's what we used until over 1. If your son isn't on zantac and or Prilosac or Prevacid I'd call and ask if you can add that to see f it held with the acid reflux and the stooping issues. If he's on zantac alone maybe discuss adding the Prevacid or Prilosac. Prevacid and Prilosac work the same way just different meds and those both work different than zantac.

 

[Tnjackson2]

Hey Aboveallislove, he started Prevacid about a week ago. Hopefully it helps his pain and dealing with the acid; also help with the enzymes like you said. He needs all the absorption help he can get.

 

[Aboveallislove]

Great. And if still having issues maybe discuss adding zantac. They work differently also prepaid I think can take two weeks to start working. Zantac is a fast acting mechanism. Our son has been on max of both since less than a year. Good luck!