Paediatrician needed (preferably gastroenterologist)

[billy1970]

HI there,

I have an 11 month old who has been writhing about and crying out as if in pain since she was 3 months old. We are getting no sleep. The local gps and health visitors kept telling me that it was just teething but recently a doctor who saw her during a bout of the runs said it was not normal. We took her to a private paediatrician in london as the nhs waiting list was too long who thought she had silent reflux and prescribed tablets. Took her back as no change and he prescribed anti histamines at night to calm her down for sleep and told me to put her on soya as may be cows milk intolerant.

I have done all of that with no change. Spoke to him today. He said try pepti-junior and if no change then straight to an endoscopy!!!!!!!

He did not understand my great reluctance to go to invasive testing and I really want to get a second opinion before I lose my sanity. He was really short with me and didn't like me questioning anything and I need someone more open than that.

Does anyone know of a really good paediatrician (gastro speciality great but no problem if not) in london or kent - or indeed anywhere that practices nhs or private? I can't find anyone to recommend a person with a good reputation.

With thanks,

Sarah

Right. What medication is the baby on for silent reflux? It is poss the medication is not working / not enough for child's weight. Any other symptoms of silent reflux? (sicky burps, sticking tongue out a lot, bad feeding, hates being laid down flat etc. The writhing around and screaming fits this but could also be other things)

If paediatrician suspects cow's milk protein intolerance, soya no use - many children intolerant to cow's milk protein are intolerant to soya. Pepti junior also not necessarily any use - nutrimagen / neocate may be better - although disgusting. Any other symptoms of cow's milk protein intolerance? (eczema, diarrhoea / constipation etc.)

How does baby feed on solids? How is milk intake and weight gain? Any other symptoms of anything at all other than the poor sleep and pain? Was he or she full term and 'normal' delivery?

Are you still on waiting list for NHS paediatrician? You might have a long wait to see paediatric gastroenterologist if there is no serious weight gain issue, we were always sent to see paediatrician first. The first thing NHS do for reflux is barium swallow, this is not invasive, then PH test is next step.

Firstly, thank you so much for responding. I felt so alone with this and don't now.

Isobel is 11 months. She is on ompeprazole for the reflux. She eats all solids very well and is a chunky little girl! She is pretty happy most of the time - except when trying to sleep really. She hates being laid on her back. She rarely has constipation or the runs - usually goes twice a day - and no skin problems at all. No tongue symptoms. She gets lots of hickups and looks like her food and milk (more so milk) is repeating on her very often but does not cry out in pain with it. She has 3 bottles a day still. She posits now and then - this seems to be more pronounced on the soya ironically!

Really no other symptoms I can think of. She tends to fall asleep on me with her back to me rather and seems more uncomfortable when she is asleep chest to chest. She moves about alot and then wakes up very cross. When put into cot she immediately goes on to her stomach with knees in and bottom in the air. She then moves around the whole cot hitting her head off it on numerous occasions. She has even tried to sleep sitting up and letting her body go forwards.

These are the only symptoms. She seems really happy until she tries to sleep.

It is horrible to watch. I just want to do what is best for her but really don't know what that is. I am not happy with the situation even though I respect I am a layperson. She is on all of these different things and they don't even have a clue what is wrong.

My son had barium swallow test at UCH which apparently showed reflux but the gastro paeds we saw at GOSH don't think that's a gold standard test for reflux and so weren't particularly interested in results. Strange.

Unlike Isobel he had poor weight gain and was falling off weight and height charts, plus was severely constipated. He basically wouldn't eat and ended up getting viruses all the time.

He ended up having endoscopy and was diagnosed with eosinophilic colitis - had steroids and additional feeding (via NG tube) and all manner of antiallergy meds and anti reflux ones. But he has also been on milk, egg, wheat and soya free diet for over a year. These 4 allergens seem to be the ones all the gastro people at GOSH remove as a starting point - and then see what invasive procedures are needed if that doesn't work (it didn't work with my son, hence the endoscopy).

He saw Dr Kiparissi, she is a gastro paed at GOSH - perhaps she sees private patients, she is very nice. My only piece of advice is that it is a very long process, my son has just turned 3 and only recently seen an improvement, and we began the process of trying to find out what was wrong 18months ago.

Good luck

Well it does sound like silent reflux, I'm not sure about CMP intolerance to be honest given that there are no other symptoms. The soya milk could be thinner than her usual formula. What is her current dosage of omeprazole? Have you done all the usual things with the cot e.g. raising the head end, keeping her straight up after a milk feed?

I don't know if this helps but you are on the home strait - DC1 was over reflux at 12 months, DC2 is 19 months (who had it very very badly, stopped breathing etc.) is just now coming off omeprazole and sleep has improved massively just in the last month. He used to do exactly as you describe, try to sleep sitting up in the corner crawl round trying to get comfortable and so on. What helped was increasing the dosage of his medicine as he gained weight, I think 12 months was about the last time we increased it and since 17 months we have been decreasing it.

When does she have her omeprazole and in what form? I have not heard of antihistamines being prescribed before in this situation and I would ask the GP whether you can stop them given that they are not helping her sleep anyway.

Thanks so much for all the helpful advice. I feel so much better knowing that someone has listened. You get really sick of doctors looking at you like you are loopy!

Isobel is on 10mg of Omeprazole twice a day. She is a big girl for 11 months so maybe it is not enough? Her bed is raised and we hold her upright for ages after her milk/food. I will get in touch with Great Ormond Street and see if any of their gastro paeds see patients privately. I don't think they will agree to refer us on the nhs as we are based in Kent but I can try.

I am so pleased to know that from your experience they tried much more before resorting to endoscopy - although very sorry you had to go through it - it must have been a very stressful time.

Thanks again ladies. I will give you an update.

My son had silent reflux - he really struggled to sleep flat and was often inconsolable - until he was on ranitidine and domperidone at 8 weeks old when he became a different baby. He gained weight really well and so we had to go back to the gp every 3 or 4 weeks to increase the dosage. I think it was the ranitidine that helped the most - we tried taking him off it a few times, but he would quickly get more uncomfortable. He got much better on solids, but there were certain foods that made him worse - what helped was avoiding any acidic (esp citrus fruit) or dairy foods anywhere near a sleep time, ensuring his last meal was several hours before bedtime. Even though I am in london, I can't recommend a paediatrician as most of our prescribing was done by our gp who researched the topic especially for us and made a real effort to help (unlike the consultant we saw who wasn't prepared to say he didn't know much about it). He was off his medication just after he was one, but only because we had learnt how to manage things (well-timed meals, milk at least 30 mins before bed, avoiding some foods esp banana, obsessive winding and cot on a tilt).

Not sure if any of this is helpful as it is not what you asked for, but HTH, and wish you luck. My son is now nearly three and over it mostly, although stomachache still wakes him sometimes if he's had a late meal.

How about asking the doctor to try her on Domperidone medicine as well as the Omperazole? Domperidone works by helping to move food faster through the digestive system. This helps prevent feelings of sickness, bloatedness and regurgitation. DS was on both for awhile and the combination seemed to help a lot.

Try dr Eltumi at the Portland consulting rooms... Off to see him this afternoon with ds2. Call the main portLand number and they will give you an appointment. It is opposite the Portland hospital xxxx

Hi Billy1970,

My dd2 suffered very bad with reflux from about 3 months old to the point where she was starting to loss weight/failure to thrive, I had her at my gp what felt like 100 times for it and she had her on omeprazole which was making no difference to her, (her twin dd1 suffered the same and omeprazole worked a treat for her). We tried changing formulas, lactose free formulas, thickened formulas, everything and no difference, got her seen by a pediatrician in our local hospital who put her on ranitidine. She had to take it 3 times a day and the difference was noticeable from day one, she was back feeding again and slowly started to put on weight again, we had to bring her back every 2 months or so to adjust the dose as she put on weight and it took her a while to trust eating wasnt going to cause her discomfort, even now at nearly 2 she is still a picky eater and can be quiet suspicious of food , but we slowly weaned her off the ranitidine. By 18 months she was off it completely. Every now and then certain foods will make her a bit refluxy now but we use the gaviscon sachets.
Anyways hope that essay was of some use to you and you get some answers soon

Deb :)