Help - does anyone's baby have pyloric stenosis or gastric reflux?

[eandz]

following a thread i started earlier here

i decided with the help of jacksmama to start this thread for ideas that could help alleviate the pain my son is going through.

i'm not completely sure if my son has pyloric stenosis or not, but i do know that if this is just reflux it's getting worse by the day, even with the medicine and then upping the dosage.

for the record, the gp are not being very helpful, i've been going almost daily. Yesterday i did cause a scene which did not really do much except result in another appointment for Friday morning.

I've made appointments for cranial osteopathy, but can't be seen before the 4th.

I've made an appointment with a private pediatrician, but he can't see me till tomorrow. I will however be calling a few more times over the next hour or two to see if i can possibly be seen any sooner.

[EachPeachPearMum]

Hi - I read your other thread.
Could I just put your mind at ease? Pyloric stenosis is extremely rare, and it does sound like reflux, after the experience we had with our DD. A paed will be easily able to rule it out if he doesn't have it.

It is odd the drugs they have prescribed- not gaviscon? Are you still in UK? (I realise you move between UK and US)

There is formula you can buy for babies with reflux- cannot rememebr the name sorry- my DD was bf, so we never used formula- someone should be along with the name of it I'm sure.

I know how the sleep thing is- it got the same with us- could not put her down without screaming- she couldn't sleep at all- would drop off through exhaustion, then wake in pain 5 minutes later.

WHat helped:

Holding her upright on my shoulder for 20mins after each feed (she was a lousy burper, always!) she usually dropped off to sleep like this, then I would put her down.

Elevating the head of the moses basket/cot- we just used a huge pile of books, and put a sheet tied to the bars between her legs (over one, under the other) to stop her sliding down (on advice of paed)

Sling during the day- though you are doing this already. She never wanted to have tummy time- used to scream- so we just didn't do it until she was older and her reflux improved.

Most babies do see significant improvement with age.

I know one baby who was 4 months behind on growth curve due to his severe reflux- he was like a prem baby, so teeny. As a toddler you would never know there had ever been a problem- once he got to around 14 mo he had caught up his peers- this is not long-lasting in terms of his life.

Good luck- it is very hard, as your sleep is so disrupted too, I know- but it will pass.

[eandz]

oh sorry, they did give me infant gaviscon but that was weeks and weeks ago. it got too bad on the gaviscon so they switched us to domperidone and renititdine after a few weeks of no improvement.

[eandz]

and yes, i am in the uk now.

[katsh]

Just to say sorry you're experiencing this. My dd2 had reflux - undiagnosed until she was 11 weeks, by which point I thought that she had brain damage as she had never smiled, didn't follow objects , didn't move - just screamed and vomitted so know a little how you feel. My GP eventually sent us to paediatric a&e, and she was admitted for 2 days of observations. They were fantastic and she began to improve, but it took until she was nearly 1 before she was fine. I know it seems like forever, but if you can hold on until tomorrow the paediatrician sounds like your best bet. Is your baby keeping anything in? If you are worried about whether he is becoming dehydrated then you could go to a paediatric a&e. If he is still keeping some milk down then you just have to get through to tomorrow. Babies with reflux as bad as you are experiencing make you feel desperate, but you are doing all you can. It is awful and I'm sending you a huge hug.

[eandz]

i've been to one before, thats where they originally prescribed the domperidone and renitititdine (however you spell it)...

[eandz]

i'm bumpbing for myself.

[Jacksmama]

Found you. Sounds like great advice from EachPeach.

Bump!!

[eandz]

ok, since he's co-sleeping in a snuggle nest, would it be ok to prop up the back part (where his head and torso are) with a hard firm pillow? snuggle nest

[psychomum5]

I have had three DX'd with GORD (gastro reflux disease)..........so my sympathy. it is hard work, but get-thru-able.

I was apparently a pyloric stenosis baby......it is pretty obvious if it is that within a couple of weeks of birth, so if your DS is older than 2mths then you should be confident that it is not that.

eachpeach has given fab advice.

[mad4mybaby]

havent had chance to read your other thread but wanted to quickly post on here.. my ds1 had severe relux and ended up on omeperzole and domperidone until he was 1. My ds2 is currently in hospital as we speak v v poorley with reflux and is having a ph study and sleep study as keeps stopping breathing. they think the acid is going on his lungs..

anyway id suggest you try an amby bed? we had ds1 sleeping only on us until we got one. google it. fab things. have also got one for ds2 but sadly because he has breathing problems it isnt any good for him..

[mad4mybaby]

also they thought ds1 had pylorix stenosis as he projectile every single feed and they gave blood tests which came back clear but apparantly it can re present itself so they had to keep checking his blood for it. Anyway the best way to show if they have it or not is an ultra sound of the tummy which ds had plus barium xay. Anyway he didnt have it just severe reflux.. you should still question it, not saying he has it as sounds like my ds1 but best to rule these things out

[eandz]

eachpeach
i often have Noah upright over my shoulders for up to an hour and sometimes more. was there anything you found helpful while burping? did you pat a specific spot? rub between pats?

can i mix all the medicine into his bottle?

[mad4mybaby]

sorry to butt in but i found you shouldnt pat a relux baby as you shake around the acid.... with my ds i stroke upwards on HIS left hand side of his back as that is the side the tummy is on..

[mad4mybaby]

there are also better times to give the meds... we gave omep before a feed and the domperidone between feeds..

[treedelivery]

Came to bump but looks like I'm not needed.

I won't be around next few days eandz but as soon as I'm home from having dd2 I'll log on and see how the thread and your appointments are doing. Keep the 'it will get better' faith and good luck.

[EachPeachPearMum]

Ooh- tree- things are happening for you?

eandz- I just rubbed in circles- she has always just been rubbish at burping... other end is good though
I can't answer about medicine in bottles, as we never used bottles.

Hopefully you'll get more answers tomorrow at your paeds' appointment.

[psychomum5]

eandz.....with my children, I gave the reflux meds an hour before feeds, and the gaviscon in the feeds (well, with DS2 who was swapped over to bottles).

it was the gaviscon that prevented me from making bottles in advance as it makes the feed slightly thicker so as not to reflux back up so easily (nor burn if it did).

[eandz]

omg, i didn't know you shouldn't pat them. i feel absolutely horrible.

also, i thought i had to stop the baby gaviscon once i was on these new meds.

i have horrible indigestion too, and opremazole is the only thing that ever worked for me. i really hope i can get some for noah.

thank you treedelivery you have been amazing. i hope whatever reason you are taking a hiatus from mn-- it'll be awesome.

mad4mybaby how are your boys now? any news on ds2? i'm actually quite concerned for your baby.

psychomum5
can i give the reflux medicines more than three times a day?

[treedelivery]

Don't feel awful about the patting eandz, reflux is one of those problems that every one gets a whole tonne of conflicting advice from health professionals about [or none at all] - and then comes to mumsnet to get it all made into sense .

Off to be induced in the morning, but will be back directly.

[eandz]

oh wow!! good luck on babytreedelivery!

[jellybeans]

HI my DS is 10 weeks, has severe reflux so I know what you are going though, it is awful.
He is on Omeprozole and Domperidone (Gaviscn didn't help) which seemed to help at first but now he is back to extremely irritable Poor thing is really suffering. I am thinking as he has put on 20% weight he may need a higher dose. GP just checked him over and said he is fine, 'just the reflux/acid' and to wait for hospital review. 'Luckily' DS was diagnosed at 4 weeks as he had a choking episode and stopped breathing so got admitted via A&E.

His main symptoms are severe hiccups, being sick (usually swallows it down), always swallowing/gagging/choking, irritable, looking in pain/bad taste in mouth, poor sleeping (up all night till recently), awful wind. He puts on weight still as swallows sick and feeds very often. What helped us was...an Amby nest..DS sleeps a few hours now as he loves movement..it really does work for irritable babies. I did have a snuggle nest but sold it as when I put the head part up, DS slid down into the bed. I like the Amby as I can have him right next to my side of bed.

Anyway hope you get DS sorted soon and he grows out of it really quick

mad4mybaby, hope your DS is OK,

[eandz]

thank you for this post jellybeans

i've been looking at amby nests since someone mentioned them on this thread earlier.

i hope your son feels better soon and is able to get his rest.

[mad4mybaby]

hi again well ds1 is fine now apart from food allergies(is there any possibilty that your LO could be allergic/intolerant to dairy?) just that apparantly goes hand in hand with reflux as it makes the reflux worse? Milks like nutramigen are hydrolised but still have tiny bit off dairy/soya and both my ds's allergies to severe to tolerate, neocate is a manmade milk that my ds2 was takn off a week ago as still didnt tolerate it he has been put on nanny goat milk formula (thats another story before anyone starts saying its bad!) as that is the only thing ds1 could tolerate and still has goats milk. Not saying that necessarily your LO case, just perhaps looking into?

No update on ds2, i feel v v sad as got wires all over him and wont know anything till later. let me know how you get on today. one word of advise, stand your ground. if your not happy with what they say demand 2nd opinion. i saw a registra 2 weeks ago as my paed was sick who told me ds2 'just had a cold and was constipated and will be fine in 6 weeks' then a week later is rushed into hospital as looks as though he has acid on his lungs which is potentially fatal. thankfully they are on the ball now but ALWAYS trust your instincts, you know best for your LO x

[EachPeachPearMum]

How did it go at the paediatricians?

[boccadellaverita]

This isn't going to be much help to you, but my husband had pyloric stenosis as a baby. He had surgery when he was very small (a few days old, I think). I don't know much about it and I can't ask his mum, but I've always got the impression that (as others have said) pyloric stenosis is apparent pretty much from birth.