Breastfeeding and Pancreatic Insufficiency

annonymous

New member
If a baby tested positive (at 2 wks old) for SEVERE pancreatic insufficiency:

When would signs of malabsorbtion start to appear in an EXCLUSIVELY BREASTFED baby?
What would the signs look like? Would the stools be the typical description of greasy, oily, foul-smelling, etc?
How long did you breastfeed and when did you start noticing any symptoms (including digestive, respiratory, clubbing, saltiness, etc. etc.) ?

Okay, here's a quick version of our story. The bottom line is that we have several tests that conflict each other and I believe that my baby may only be a carrier if anything. My baby had the heel prick done for newborn screening when he was 13 hours old. The screening is supposed to be done AFTER they are 24 hours old. The nurse told us that we'll probably get called in to redo some of the tests because they might come back abnormal since we did it so early. This is why we thought nothing of being called in for a sweat test at 2 wks old. Imagine our shock when his test came back at 70! Anyway, he was sweat tested 2x and each time the amount of sweat was questioned but they provided results anyway. It was never close to 100mg or 15microliters, which is what I've read is the min. amount, otherwise it's QNS (quantity not sufficient). The CF handbook (from CFF) and the Macroduct manual both provide information stating that low sweat rates can cause salt levels to be high/abnormal. Anyway, the blood drawn for Ambry came back NEGATIVE and his 2nd newborn screening for CF came back NEGATIVE (done at 2wks old). He was 4 mo. last week and is over 17 lbs! He does not nurse excessively, in fact, much less than my previous children. He is the most peaceful and content baby. He poops weekly, which is common for bf babies and his stools are normal breastfed poop. If he was SEVERELY pancreatic insufficient, wouldn't he be showing signs by now? He eats well and is gaining well and our doctor says this is very reassurring.
 

Emily65Roses

New member
I'm not a mother, but let me throw in what I know. From other mothers that I've heard, breastfeeding didn't cut it. That's not to say quit breastfeeding. Just that a lot of mothers had to add formula <i>too</i>. Keep breastfeeding, but add in the formula. Alternate on and off or something. My mom didn't breastfeed me hardly at all because I was tiny and no matter how much I nursed, I was still hungry, so they started me on Progestimil.
 

EmilysMom

New member
Part of the reason I didn't breastfeed Emily was she was at a different hospital also. She had been transferred to Yale New Haven's NICU and I was still at the hospital where I had my C-section, so my breasts were with me....LOL
She also was little and they wanted her on that god-awful formula so she would put weight on quicker. Progestimil...smelled awful but worked GREAT!
 

anonymous

New member
I exclusively breastfed my now 8 month old daughter, and she didn't show any signs of pancreatic insufficiency at all during early infancy. She has a mutation that is commonly associated with Pancreatic Sufficiency, she was gaining weight very well, and she had three or so stools a day, none smelling any different than normal baby smell. We took her in for the fecal fat test around 6 weeks old, totally expecting it to come back negative, so when it was positive, I was shocked. She went on enzymes right away, and not long after that, her weight slowed to a crawl and we started to notice a much fouler smell with her stools, which were also more frequent. Her doctor upped her enzyme dosage, and although she is still a slow weight gainer, her stools have returned to normal.

Because my daughter's mutation is considered Pancreatic Sufficient and she showed no signs otherwise, I didn't consider for a second that she might have malabsortion issues. Is your baby on enzymes?

There are definitely mothers that have a hard time producing enough milk for a CF baby, but generally speaking, it is a perfect supply and demand model. The more the baby demands, the more your body will supply. Eating well and drinking tons of water will help. If your baby isnt' getting enough to eat through breastfeeding, obviously you will need to supplement with formula, but before you go straight to that, I would consider pumping in between feedings to try and stimulate more production.

I am still breastfeeding my daughter along with her daily baby food intake, and my production usually follows her eating cycles. When she began turning over, she was a lot less interested in nursing and I noticed that I was producing less milk. When she started eating more again, my body responded with more milk. Same thing when she first learned to crawl. If you want to continue breastfeeding but add more calories to your baby's meals, you can add rice cereal and oil to a bottle of pumped milk. My daughter has a bottle like this at night, and during times when her interest in nursing is less, I do the same for one of her daytime bottles.

I'm not sure I answered your post entirely, but feel free to ask more questions. There are several breastfeeding mothers that can probably offer additional help and insight.

-- Jenica
Mom to Abby (2, w/o CF) and Ellie (8 months, w/CF)
 

Ratatosk

Administrator
Staff member
Have you ever TASTED that stuff -- the pregestimil? Our son would scream and try to escape when we tried to feed it to him. I walked up to the mini-fridge in the NICU, poured myself a shot glass of it and almost barfed all over. Tastes like vomit and the way road kill smells. I didn't breastfeed, we used regular infamil formula with more powder to water ratio to bump up calories -- think he was on 24k and 27k. Our doctor told us to "feed him whatever he'll eat". I would think you'd be able to breastfeed and then possiblyl supplement with formula for extra calories.

Liza
 

EmilysMom

New member
We tried the Progestimil because the smell was so overwhelming. We used to describe it as "goat puke". (Sorry for the graphic description) It tasted awful to us but Emily thrived on it until she started baby food...then she couldn't get enough of that. SHe would wake up in the middle of the night for vanilla custard or a jar of anything before she could go back to sleep.
 

wanderlost

New member
I was breastfed and formula fed as a baby, and until my diagnosis at 6 weeks I was STARVING. I wasn't getting anything from either food. Once I had the enzymes I startd gaining like crazy. I was on formula at that time simply because my mom had given up trying to bf when they didn't know what was wrong. I was on regular formula however.
 

CFmother

New member
My son was breastfed for 6 months. At age 3 months he was diagnozed CF since he did not gain weight (or length). He then had 15-20 stools per day. With enzymes each meal (breastmilk) he started to grow very well, both in weight and length. Number of stools per day was approx 8 I think. At 6 months we added a portion of porridge, and introduced "real" food (slowly). He has never taken any formula (never needed to).

At age 15 months he is still breastfeeding at evenings, nights and mornings.

Regards,

Swedish mother with CF son 15 months old
 

CFmother

New member
He was EXCLUSIVELY breastfeed for 6 months I meant<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

anonymous

New member
I'm not sure I understand your question, but I exclusively breastfed my daughter with CF. She NEVER had any type of formula only breastmilk. She did not even start whole milk til she was about 15 months or so(can't remember). She did start some solids around 6 1/2 -7 months old. My daughter is extremely pancreatic insufficient being born with a meconium ileus requiring a small bowel resection at 5 days old. She started pancreatic enzymes with her first feeding and has been on them since. Her poops were not exactly like a breastfed baby in that if she didn't get enough enzymes she would have oil in her stools. I always had to keep up with monitoring her poops in relation to her enzyme dosage. Her enzymes dose is based on her weight, the more she weighs the more her enzyme dose goes up. as well as how her poops look, too. Breastmilk is easily digestible and I do know one mom who didn't start giving enzymes til her daughter was 6 months old, when she weaned her onto formula. Not sure if this is the way it goes these days.

Anyhow, Just wanted to let you know it is possilble to exclusively breastfeed a baby with CF. My daughter also was not skinny, her ped was usually pretty happy with her weight and when her growth slowed it was becasue her enzymes needed to be adjusted.

Just wanted to add if my daughter did not take enzymes there is no way should would gain weight.

Rebecca( mom to Sammy no CF and Maggie 3 with CF)
 

anonymous

New member
Hi, my daughter (now almost 3wcf) was breastfed for 10 months. She was not diagnosed until 12 months. Her weight gain did slow down a little after she started eating baby food but not enough to cause any worry. It was after she started getting formula that her weight gain almost STOPPED and she started acting hungry a lot. She has an uncommon mutation (only one other person in the patient registry with it) so she seemed just a carrier of DF508 by Ambry but her sweat test was in the low 100's so we knew she was definately positive.

Hope this helps!
Kelli - mom of Sydney 35 months wcf & Andrew 2 weeks nocf
 

JRPandTJP

New member
With regard to pancreatic insufficiency (PI), the type of nutrition is not the cause of poor weight gain. If a child with CF is PI, he can have a variety of issues from poor weight gain, green/ frothy stools (seen more with breastfed which should be yellow or tan), frequent stools, greasy stools, foul-smelling stools (seen more with formula), vitamin deficiencies (due to fat soluable vitamin ADEK not getting absorbed), low protein levels and even liver enzyme levels being off. Not all of these symptoms present in all cases and not all of them indicate the severity of CF. In addition, and to make it more complicated, not all CFer experience PI.

If a CF child is PI and goes untreated they are more likely to develop the vitamin deficiencies or experience other complications from malnutrition caused from malabsorption of nutrients. I have not come across anything that suggests breastfed babies experience this sooner or more frequently than formula fed. If the nutrients aren't getting absorbed, they aren't getting absorbed. Enzymes are required to correct the malabsorption. Once this happens babies will recover their nutrition status and go on to gain weight normally. If they have not been gained well for quite some time, supplementation via and NG tube or SNS can help them catch up and it won't interupt the breastfeeding or your supply.

In fact, because breastmilk is so easily absorbed they usually do very well. Some moms may have to supplement at times to recover from being undiagnosed, when they are ill if weight loss occurs, but breast feeding is considered best for baby, CF or not. Frequent and long nursing sessions is the best way to increase supply. Their are other natural ways to increase supply if moms are concerned (like Fenugreek, oatmeal, and brewers yeast). When baby is ready for food, alway nurse first to keep supply up. Encourage and allow night time feedings as many busy babies will make up calorie intake at night. And trust your body in its ability to provide and adjust to the constantly changing demands of your baby. Just because they slow a bit during developmental bursts doesn't mean your supply won't adjust.

My son was extremely pancreatic insufficient prior to diagnosis and had severe vitamin deficiencies, green/frothy stools, low protein levels with swelling, frequent stools, constant nursing and reflux. He had to be supplemented at first with a NG tube to help get his weight and nutrition status up, then I used a supplemental nuser to wean him of formula as my supply adjusted. This takes patience but it is well worth when they are nursing and gaining wel again a few weeks later.

I hope this answers your questions more clearly. If you baby is gaining well and not experiencing sign of malabsorption, it would be up to you to have further testing done. They can check his vitamin levels and protein levels. They can also do a genetic test called a Guthrey panel test to check for most of the CF mutations (this is a heal stick genetic test not a new born screening). Results are usually back in 2 weeks. This can help if sweat tests are inconclusive or until you can get one.

Hope your baby is well and will test negative. Some babies are just slow gainers at first and work it out just fine.

Warmly,
Jody
 
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