To ask for help - reflux baby. I’m desperate

[lillianhom]

Hi, I know this isn’t the best place to post but there is more traffic here and I’m wondering if anyone has any advice.

My 8 week old baby seems to suffer from silent reflux and sometimes the odd posseting. She also seems to get quite chesty after a feed (could this be dysphagia??).

She arches her back after a couple of sucks from her bottle and screams and cries. Every bottle is a fight. She coughs and gags her way through it over an hour plus. She will only take .5-1oz at a time and very slowly. She stops breathing whilst feeding sometimes.

I took her to the GP who prescribed infant gaviscon but this did nothing except make her constipated.

She has not had any common symptoms of cmpa however the GP referred her to the paediatric dietician who has now put her on nutramigen puramino and carobel. I express breast milk (she never latched) and substitute the rest with formula. I am also no longer eating any dairy.

Since going on this new formula she is no longer interested in eating. She only had 15oz yesterday when before (at around 4 weeks) she was eating around 30oz (this would be around 30 separate feeds a day). She has never taken a big feed in one sitting (more than 2oz). She does not sleep in the day. She has been awake for 16 hours straight on several occasions yet the GP doesn’t seem concerned.

Her weight gain is fine so far.

I am at my wits end! Has anyone experienced anything like this??

Reflux is awful. I never forget the first few months with my reflux baby.

heymickey 's post is excellent and I agree with everything in it.

Omperazole made the most difference to us. Ask your GP. They may prescribe it. Our son has CMPA top and reflux can be a symptom of it. Nutramigen didn't do much for him. Neocate worked much better and doesn't taste as bad either. I don't see why you cannot try reflux meds as well as the prescribed mill to be honest. You can always try taking one away later when things have settled to see which helped. We definitely needed both. Are you going to see a part doctor? Can you get back I touch with the dietician to discuss this further?

I agree that a sling was the best thing for coping in the day. We had a stretchy wrap and he basically lived in it and was really the only time he was ever content.

I hope you get the help you need. It really is incredibly hard. It will get better.

*paed doctor, not part doctor
*milk not mill
Sigh

PS even the doctor said gaviscon was useless (after we had wasted our time trying it)

It could be Transient Lactase Deficiency, where the baby isn't yet producing enough lactase, the enzyme which breaks down lactose. You could try Colief, available from chemist. Try it for a week and if you see an improvement, ask for it to be prescribed (it's v expensive). Two of my children had this problem.

Sorry if you've already thought of this, but what teat size are you using? My DD had a tongue tie and reflux from birth, which became silent reflux once the tongue tie was dealt with and she was put on gaviscon.
She seemed to get worse recently, (now 12 weeks) taking less formula, screaming whilst feeding, arching her back and not napping in the day. The GP gave us ranitidine but I tried the next teat size up instead and it worked. She's now up to 5-6oz every 3 hours. Seems she was more frustrated with the slower flow rather than her reflux being the cause.

Thank you so much for all your advice especially heymickey.

I will ring the GP again today and I have another appointment with the dietician this week so will push for more then.

She’s on a variflow teat so she can control what she gets, it works well with the carobel as it’s quite thick.

I’ve also witnessed the milk rising from the back of her throat and down again!

I’m not convinced it is a cows milk allergy. She has no rashes or eczema, no diarrhoea. It just seems like they are trying to fob me off. I specifically asked the dietician for neocate as I had heard good things but she said they don’t prescribe it at fife health board which I found weird? The gaviscon did nothing except make her constipated which was heart breaking in itself.

I have a sling I will use it more, I found she would get quite sweaty in it and would worry that she would overheat. I think worrying is all I do these days .

Do you think I should stick out the nutramigen for the month and see if it helps before trying anything else? If it is cmpa then surely the reflux will stop?

We were forced through experimental stages and combinations for weeks. The pharmacist would greet me by name after 5 weeks. Our magic combination was Losec suspension and carobel. You will be told that losec doesn't come in liquid form but it can (or did 7 years ago.)
Transformed ds and I was finally able to spend time with him without doubting my sanity.

Also, I meant to add that sleeping on his tummy really helped him to settle. We got an angel care monitor as I was absolutely terrified of this sleeping position.

we had similar problems with my little girl she was grumpy after feeds and would scream etc and we have her colief. it made such a difference would highly recommend!

Reflux is horrible. Most of my tips have been mentioned, the only other one that helped my sister with DN but not me was getting a baby swing as the motion can help them.

My daughter's silent reflux was caused by CMPA and her reacting to traces in my breastmilk, it was pretty much her only symptom other than slightly loose stools. I've seen research suggesting that up to about a third of babies with reflux are actually allergic to cows milk. It can take 2 to 3 weeks for the symptoms to clear once off dairy. How long have you been trying them for?

Gaviscon did nothing for us, but our GP wouldn't give ranitidine. Apparently that's needs a peads referral in our area and because she was piling on weight due to comfort feeding she wasn't sick enough for that. If dairy free doesn't help I hope you have more success than we did with your GP!

We had to try Nutramigen before they would give us Neocate. Neocate is very expensive. Doesnt really sound like CMPA though. My DS had awful stools as well and lots of wind. I would ask for their reasoning regarding CMPA and ask why you cannot try omperazole or ranitidine first seeing as their are no actual symptoms of CMPA. Do not be robbed off by needing a referral to get it prescribed. If that is the rule then they need to refer you urgently. Your baby and you are suffering and it's likely to be helped by these drugs.

I have to confess to putting my d's down on his front to sleep. It was the only way I could put him down so I felt I had no choice. I was going crazy and close to breakdown I think.

If she gets hot in the sling strip her down before she goes in. There is some good information on the net about the position she should be in. I remember that you should be able to.kiss the top of their head whilst in there. I really would give it another go if you can.

*fobbed

Dr Neil Shah consultant paed gastroenterologist at Gt Ormond St. Is treating reflux with antihistamines and antibiotics - Google for his papers and current research. It sounds unusual as the GPs and most consultants are still on the gaviscon/ranitidine/omeprazole/wait for them to grow up pathway. Shah saved four children I know personally from very painful and life changing reflux.

All the rest of the advice on sleeping, teats, elemental formula and tongue tie is golden as well. But I really believe the root cause of reflux is more in line with the Dr Shah approach.

I haven't RTFT in detail so sorry if I'm repeating what others have said.

My DS had horrific silent reflux. Refused to feed, arched back, cried constantly, turned face away from bottle, sicked up little mouthfuls of clear stinking liquid that turned out to be acid. He also only drank milk oz by oz by oz, maybe 1oz an hour. It was hell. Was sent away with 'he's just colicky/maybe that's just how he eats' from me GP several times before I had a total shit fit and refused to leave until he gave me a referral to a gastric paediatrician. We didn't try gaviscon because it often makes babies constipated and my baby was already having trouble there. Tried Infacol, Colief, Gripe water, none of which made a jot of difference.

Saw the paediatrician at 16 weeks who prescribed ranitidine. This helped for probably 2 weeks then stopped working. We went back and we're given Omeprazole suspension which did help. It didn't get rid of in entirely and by this time my baby had a complete bottle aversion and would only dreamfeed, but once he was asleep I could get a 5/6oz bottle down him with no issue. We continued with this until the reflux went on its own at 7.5 months, once DS was upright more and starting to wean (weaning was a sloooow process with him, the SR left him with a really over sensitive gag reflex). My DS wasn't CMPA, but it's really common for reflux babies to have both. We never changed milk because of this he was mix fed BM and standard Aptamil.

I would try in the short term keeping baby upright as much as you can - a good sling is a lifesaver and propping up the end of the crib with a couple of books so baby's head is higher than toes. Then get yourself to the GP and don't leave until they've helped you. It's so hard having a refluxer and I found GPs to be woefully ignorant ('maybe the problem is the amount you're stressing about this?' Erm, no!). You don't have to suffer through this. There is also a FB page if you're on it called 'Living with Reflux - The UKs national charity' that is full of reflux mums which I found to be a goldmine of information and support.

Just googled Dr Shah, lots of interesting reading there.

I think you just have to keep badgering for better reflux meds and referrals. Stopping dairy won't necessarily stop the reflux even if they do have cmpa, they can have both (or other allergies)

If you can afford it or have private insurance, your best bet is to get a GP referral or self-refer to a private Paediatric Gastroenterologist (eg: Dr Muftah Eltumi or Dr Neil Shah at the Portland Hospital consulting rooms in London). To self refer, you just ring the Portland appointments line.

For my son (silent reflux and cmpi), what worked was Neocate (an amino acid-based formula) mixed with Carobel (a thickener); and Omperazole ("Losec mups" - a protein pump inhibitor).

Also, there is a book called "the Sensational Baby Sleep Plan" by Alison Scott-Wright which has an excellent chapter on reflux and silent reflux. She also does home visits to help "sort out" your baby, but she is very expensive (she has a website).

I could have written your post about DD thirty years ago and about DGD 2 years ago. It is just so distressing and wretched. It’s awful to see them so distressed. DGD would cry when she even saw a bottle of milk :(. I really feel for you.

What helped DGD was ranitidine, carobel and Infatrini formula (to make sure she was getting more calories. Her weight gain was very slow ).

Both DD and DGD fed best when drowsy so if you haven’t tried feeding just after DD has fallen asleep it might be worth a shot. And also upright in her pushchair when you are out. Somehow the distraction seemed to help DGD to feed better. She was never easy to feed though I have to be honest. At about 7 or 8 months she started to love her milk feeds and since then has had no problems and even now loves a big cup of milk when she gets up and before bed.

It can be hard for some reason to get GPs to take it seriously but keep
Going back. All gaviscon did for DGD was add to her problems by giving her constipation.