Help me help another mama--Pyloric Stenosis

[2boyzmama]

I am working with a mama through La Leche League (she sometimes posts here, not sure if she'll see this and comment or not). Her baby had Pyloric Stenosis at birth, repaired at 4 weeks old (I believe?). He also has had a tongue clip twice (once by a ped, once by a dentist)

He is now 3 months old. Developmentally he is doing well, but he is NOT gaining weight. He's growing in length and head circumference (I'm not sure what his curve is, but he is gaining in both areas) but his weight is very low.

Help me brainstorm here!

--He appears to be transferring milk (weigh-feed-weigh shows up to 3oz).

--Mom appears to be making plenty of milk (she pumps well, and is tandeming and her older nursling reports good output)

--Baby is still spitting up a lot (is on Zantac, hopefully will be moved to Prevacid soon).

--There is some concern of a high palate (which would go along with the tongue tie) but again baby does appear to be transferring milk despite that.

--Baby is peeing well, pooping infrequently though (and it's a strange smell and consistency).

Is anyone aware of other medical conditions that can accompany Pyloric Stenosis? The repair was done by a General Surgeon, not a GI, baby has not had any other workups (no upper GI, no swallow study, no barium enema, no cardiac workup, no kidney workup, nothing)

Ped, of course, has recommended formula, but this does not appear to be a breastfeeding or breastmilk issue, at least not solely.

What else should be considered here? Mom is working on increasing hind milk intake, is keeping a log of when he feeds, how long, which side, when she pumps, how much output, how much fore/hind after the milk separates, when baby pees, poops, sleeps, etc. Mom is working closely with Lactation Consultants and several LLL leaders. Mom has successfully breastfed her other children for many years, definitely knows what she is doing!

[RiverTam]

My brother (9 years younger than me) and my second son both had pyloric stenosis. It's not really co-morbid with any other condition that would cause a failure to thrive.

I would take the child back to the surgeon who did the surgery and ask for an ultrasound of the pyloris. If the baby is having lots of spit-up and reflux, maybe the surgery wasn't completely successful or the baby healed the surgical injury. (To treat pyloric stenosis, the surgeon cuts the muscle, forcing it to let go.) It happens very rarely that surgery isn't successful, but it could happen.

He may be getting some food, but not enough food. DS#2 didn't lose weight when he had pyloric stenosis, but he didn't gain weight either.

If the ultrasound is okay, I would supplement breast feeding with a high calorie formula. Breast feeding is wonderful, but the most important thing is that this baby get enough calories to grow.

[2boyzmama]

Thanks River.

Mom is taking baby back to the surgeon, and Ped ordered some basic blood work as well.

Good to know that it isn't comorbid with other conditions. I couldn't find much, but thought it would be worth asking to see if anyone else knew.

[khaoskat]

RiverTam:

The pyloric stenosis went uncaught/treated for about a week. Again, the Ped passed it off as breastfeeding issues, and that baby was not spitting up as much as mom seemed to think. The whole time baby was projectile vomit almost all feeds.

Baby lost just shy of about 2 pounds.

Also have cut dairy out, which seems to have helped with the reflux. Ped upped the Xantac to 1 ml from 1/2 ml.

[anj_rn]

No comorbitities with pyloric stenosis.

I would suggest an upper GI to see what is going on. Reflux meds just decrease the amount of stomach acid produced (and some increase gastric motility), they do not actually stop the reflux.

I would also suggest a GI specialist to do the work up. IME they are better at rooting out the cause without giving up on BFing.

[Lkg4dmcrc]

He sounds constipated. Has the baby had a work up of that? There are some rare things that may fit the FTT picture - but they are rare so I don't want to alarm you or the mother. Hirschsprung's disease would cause a very foul odor and strange consistency, spitting up and FTT. The absolute worst thing to do in that case is to give formula. Breastmilk is nature's best laxative.

Cincinnati Children's Hospital website has some good information on this, but again, it is rare and rare not to be caught in the newborn period.

[2boyzmama]

Originally Posted by Lkg4dmcrc

He sounds constipated. Has the baby had a work up of that? There are some rare things that may fit the FTT picture - but they are rare so I don't want to alarm you or the mother. Hirschsprung's disease would cause a very foul odor and strange consistency, spitting up and FTT. The absolute worst thing to do in that case is to give formula. Breastmilk is nature's best laxative.

Cincinnati Children's Hospital website has some good information on this, but again, it is rare and rare not to be caught in the newborn period.

I did think of Hirschprungs actually. But I *think* baby pooped normally initially. I'll have to ask mom again.

I have suggested a GI consult, a pulmo, cardiac, and ENT as well. Approach from all angles. No referrals have been given yet, except for a swallow study. Which is scheduled for this week.

[5gifts]

On the pooping issue, the chiro has been doing an adjustment on my 2.5 mth old's spine - right at the top of the diaper band. It has really been helping her poop. She'll poop like crazy after an adjustment, then twice a day for a few days. By the time we're getting to her weekly appt, she's skipping a day and straining. That might help a little.

[khaoskat]

He has always had the breastmilk consistency poop, but never seedy, just the yellow liquid during the first week or two. The issue is that he almost immediately went into the Pyloric Stenosis right at the 3 week mark.

Since the surgery his poops have been spaced out. He did poop within like 24-48 hours after surgery but trying to remember what it was like, that was like 3 months ago.

Getting an appointment set up with Chiro and message therapist. Avoiding Ped, until I can get second opinion.

Pooped today and it was 2 medium sized poops, but both of them were greenish/brownish and pasty, then when you wiped it was yellow. I did take pics.

[Lkg4dmcrc]

Many babies with HD will poop initially so don't just go by that. Is the poop foul smelling as if it is sitting in there too long?

[khaoskat]

Originally Posted by Lkg4dmcrc

Many babies with HD will poop initially so don't just go by that. Is the poop foul smelling as if it is sitting in there too long?

I have no clue how to describe the smell. It almosts like a combination of italian salad dressing mixed with ranch flavor blast gold fish crackers from pepridge farms. It does not smell like poop and I have smelled some nasty poop with three older kids.

We are also having a bad few days of spitting up since I was at the LC's on Friday. He is spitting up either many small little spit ups, or at least one if not two large ones after almost every feeding. They usually happen about 30 mins after the feeding, but some happen sooner. Also, they are not just liquid (like the milk running back out), but also have some of what I would call curled milk or curds.

Ok, have to go take care of an out of control toddler and get her to bed...