Peter was born in march, with short gap tof/oa, hes had 3 dilatations, the last one was 3 weeks ago.

I started him on pureed food 2 weeks ago and he is loving it.

saw a speech therapist on thursday who said orally and with his pharyngeal is fine (basically hes swallowing ok) and that his problems are oesophageal!!!

During a feed he comes off the breast with a splutter and gag, arches his back, hold himself rigid and really screams, i can see what looks like a swimming pool of saliva at the back of his throat, once i lift him upright he stops, then roots again and so the cycle goes on, he also does it after a feed and after pureed food he is also all of a sudden very windy.

Hes ok in the morn after a 12 hour sleep but worse as the day goes on, some days are worse than others. docs on monday gave him domperidone but they wouldnt watch him feed so they could see what i was seeing (poss coz i was breastfeeding) they just said how content and smiley he is.

speech therapist didnt see the problems either, he was as good as gold,lol, only arched his back once, which she put down to him being a bit grumpy - she didnt see him two hours later when he wouldnt settle and wouldnt feed.

basically no-one sees him as much as my and my family so whenever i take him to be checked hes a little charmer and has no probs whislt we’re there.

do others experience anything similar? does it sound like another stricture? reflux? or me being neurotic.

(sorry for long post)

hello
It is so frustrating isn’t it when you are trying to get help and the professionals dn’t see it. It sounds to me like reflux (although I’m no expert). Eva is 16 months now and we’ve had quite a few reflux related problems since she was about 3 months old. When I was feeding her she used to be on and off the breast all the time and did the arching screaming thing. I think the position I was feeding her in and possibly the flow of milk was making things worse (who knows!!!) Anyway in the end I stopped feeding her and she went on to bottles (am not suggesting for one minute you should do the same you know whats best for you on that score!!) However when she was on bottles I could feed her more upright and give her a slower teat and this meat the milk had time to get down and it wasn’t all just going up and down her oesophagus. This might not be the same for you if Peter is the same after purred food as presumably he is upright then…Does he have any other medication other than domeprodone? Eva is on gaviscon and ranitidine. If peter is struggling a while after feeding it sounds like he might need something that will hold the food in his stomach so maybe some gaviscon…? (maybe you already are!) If it is reflux it will hopefully get better. Eva’s is (fingers crosed) under control at the moment and does seem to be getting better as she eats more solid food. Sorry this is probably not much help at all….but jst wanted you to know he sounds very similar to how eva was at his age.
claire xx

hi, peter is also on omeprazole once a day for reflux as well as the domperidone.

i was thinking it was reflux too but the medics never see it in the 15 minutes i am in their with him,lol.

how many grow out of reflux?? the speech therapist saif they usually take them off their meds at around 6 months!!

hi peters mum

that is silent reflux. i had the same prob of drs not seeing it when we were having check ups, we had a pH study done and they only watched the first 30mins and said it was really bad, worst they had seen before.we too started off on omperzole but after 6mths things started to get worst so they changed to ranitidine which also was no good.last wk devin had a nissen fundo wrap done and is great, went in with a screaming grumpy kid left with a brand new little boy, he is on ranitidine at the moment until his wounds heal but once they heal he wont need any meds they said.hope this has shed some light on your problem.
Jo

thanx for the replies. we have an outpatient appointment this thursday (my 30th birthday of all days!!) with pee wees consultant so we will make a list of what we need to discuss with her and hopefully find out more.

his saliva is getting really bad now, this has been the tell-tale sign of a stricture 3 times so far

sara - 30 August 2008 08:34 AM

with Harrison we got these telltale signs when he needed a stretch because the silent reflux was irritating the stricture sight causing it to shrink.Peter may well need a stretch if this is what is happening.Our conultant and surgeon told us that as he gets older and more upright it should lessen the problem and occur less.Luckily this has been the case, the stretches have got further apart.I hope you get some help when you see peters consultant.

we thought because peter was on meds for reflux that his reflux wouldnt irritate the sticture any more.

how old is harrison? we keep peter upright all day (carrying him in a wrap) but doesnt make a difference.

we got the letter today and it says that we not be seen by peters actual consultant!! i think that is standard practice but I reeally want to discuss my concerns with her an not yet another surgical reg.

Hi,
  Kyle to had all the symptoms you describe as soon as he was home and being breast fed. One day he did not feed all day due to the fact he was in so much pain and when we went to the local hospital at 22.00hrs they said he had a sore throat and nothing they could do(he was only weeks old)! The next day I decided to video exactly what was happening while I was feeding and returned to the Dr’s with the evidence to which they completely changed their tune, and yes Kyle was diagnosed with reflux for which he has domperidone, ranitidine and gaviscon. He has improved with age if that is any peace of mind for you but I do feel for you especially having twins! Maybe worth getting some video evidence for them!

  Regards Suzanne

well we had our appointment on 4th september and consultant said it was unlikely to be a stricture so soon after the last dilatation, to monitor him and dee him again in a months time, but suggested it was the reflux and dysmotility.

his feeding probs have gotten worse in the last week again, gagging/spluttering at the breast, very acidic smelling small amounts of vomit, loads of saliva, sloshing about in his mouth and struggling to feed in general

and today ive found out hes lost 5lb in weight,

hes just not feeding well and maintaining his weight at all.

his appointment has been brought forward to friday 19th september.

Is it possible that it could just be something we have to get used to dealing with and that there are no other drugs/operations that would help?

we had our ‘brought forward appointment’ yesterday

consultant is arranging another barium swallow but doesnt think its a stricture or his reflux.

she is thinking it is dysmotility of the oesophagus and basically we will just have to perservere and eventually he will find a way of managing it himself to a degree, (she is v nice and didnt put it quite as blunt as this obviously)

has anybody elses little ones had this?? any prersonal insight greatly appreciated

well we were back in to royal manchester childrens hospital again today.

peter has not been feeding well at all, he is arching his back and almost doing the crab with it, gargling every mouthful and exhausting himself becasue of the sheer amount of time it takes him to get a small amount of food into him.

a barium swallow showed that he didnt have a stricture but it confirmed the dysmotility and showed a tightening higher up than the join site, apparently this will only cause problems when hes eating more lumpier food.

he is being admitted on monday for observation, but his consultant thinks now it is his reflux that is causing most of the eating problems,

he doesnt vomit that much, so does that mean its silent refllux??  whats the treatment for that other than what he is already on??  hes almost 7 months now and doesnt seem to be growing out of it, its getting worse!!