Pyloric Stenosis

PYLORIC STENOSIS - Has anyone had a bub with this diagnosis?

DS is a month old and has not been holding down feeds for a week. Started of as just a wee spit-up but ramped up to the projectile vomitting. He has lost almost 1.5 kilos - praise be for huge gains in the first 3 weeks - and is now back at birth weight. After numerous CHN, GP and ED visits they have narrowed it down to possibly be Pyloric Stenosis so now we are just waiting to have an ultrasound on his tummy tomorrow to confirm PS or not. So has anyone else had experience with an infant who has it? If so please reassure me that everything will be fine - the idea of my wee little man going under the knife has me in a panic!

I dont have an infant who had it but just wanted to say my DH had it as a bub (28yrs ago) and ended up on the verge of dying because they didnt really know alot about it. He ended up with an operationand a huge scar but has been a-ok since so if its taken care of properly your bub will be just fine. We were prepped for what the go is with PS nowdays because our sons were at increased risk from having family history, these days its keyhole surgery and relatively simple. Bub has a teeny scar thatll fade to nothing and is fine from then on. The key is catching it in time but they are on the ball now they know more about it.

I hope bub gets some relief soon. From what my MIL told me about having a newbie with PS, its so heartbreaking and horrible to experience, esp when they arent getting fed because of the defect :hug:

Agree with all Freya has said. Glad your DS had a good start before the PS started, and glad you seem to be on the ball, as the dates and symptoms mean it could well be PS. I had it (am 64 now) and it also traumatised my parents badly but diagnosis, the operation and the recovery have all made lots of progress. With any surgery there are risks but they're very very low for this op. A common complaint is doctors fobbing off anxious parents instead of getting the tests for PS done. And try to find a surgeon who will try keyhole surgery as the scars will be a lot less than Freya's DH and mine. I've had few after effects - they're fairly rare, most have none at all. Photos show I flourished after the problem was fixed and this seems the usual story. My 4 kids and 6 grandkids have not been troubled by PS, but in some families it keeps coming up. The causes are still not fully understood but are multiple and varied. Best wishes.

Thanks Freya and Groffy for the reassurance.

Alot of people I have spoken to know of it but have no experience with it *sigh* He had the ultrasound yesterday afternoon so waiting on the report. And yes Goffy I have been accused of being a paranoid mother.. admittedly I was paranoid about BFing as I wasn't successful (lacked the proper support) with DS#1 who failed to thrive and therefore was anxious to know how much he weighed each week - hence the CHN telling me I was paranoid when I rang about the vomitting because he had had such HUGE gains and that I was overfeeding him which was making him vomit GRRRR if only I had trusted my mummy instinct straight away we may have had some answers already. So know just waiting by the phone........

Thanks again x

Do let us know how the U/S report went. Being back at his birth weight after 3-4 weeks is not a good sign. I follow the Facebook Group on this and the story is so common. Positive side is - operating on a baby is no small thing, so wait and consider alternatives.
The easiest-to-spot signs for parents of PS babies are significant weight loss, puke without bile (greeny fluid from passing the liver), hunger immed after vomitting, no or minimally soiled nappies, lethargy, dehydration (no wet nappies, wrinked skin, sunken eyes if it gets that bad), visible muscle ripples over the stomach with vomitting, and "the pyloric olive" (the swollen muscle as a 2 cm firm lump) able to be seen or felt when the abdomen is relaxed (eg during feeding) - see the web for this kind of info.
Again, very very few babies die of PS or the surgery now, but it usually puts the parents through a rugged time and some infants have a few ongoing problems like reflux until they grow out of it.

The U/S did not show any signs of narrowing - so we are back to square one as to a cause.

He has most but not all of the symptoms:

*significant weight loss - he is beginning to look like a sharpea puppy with all the excess skin
*projectile vomit, no bile but blood a result from the constant vomitting thus tearing his stomach lining
*lucky to have a wet nappy per day but when he does it is blood stained
*more soiled nappies than wet but still not the one per change per feed that were consistant for the 1st 3 weeks
*lethergy - some days worse than others - acutally come to think of it it's a lathegic day followed by a bright eyed day - odd!?
*some partial signs of dehydration - his fontanelle is starting to sink but still passes the pinch test and has wet lips and mouth
but yet to notice the 'olive' but i am aware that it is a sign of PS


So frustrating... and scary! Off to the GP's soon and to the pead tomorrow... fingers crossed for some light being shed on our situation soon!!! I wasn't aware there was a facebook group (guess there's a group for everything now huh?!) will have to find it and see!

Thanks Groffy!

Thanks for the update. How difficult and frustrating for you guys. Having PS in your DS' genes must also a weigh on your minds. Keep your mind open when you see the ped... so often mum knows best when all's said and done. My reading says tests are sometimes wrong - either way. I'd be a bit reassured if his condition doesn't yet worry the ped enough to go beyond "wait and see". Thinking of you & glad we didn't have to go thru this with our kids.

Well turns out he did have PS - Paed requested another ultrasound which showed significant narrowing on Wednesday, he had surgery on Thursday and we got discharged yesterday! Seems to be recovering well but we have a few obsticles to face yet - no tummy time etc.. so possibly a few develomental delays BUT he is keeping down his feeds :leap: which is what matters most! Thanks for your support again..

Good news that they worked it out, and were able to do something. Hope you have a smooth recovery.

take care,

Kate

Glad this is behind you - tough time temper us, and things should improve now. Best wishes!