13WO not fed in 7 hours and screams during bottles. Silent Reflux? Dr Fobbing Me Off? Advice Needed Please!

[FeelingHorse]

Ok, this may be long but trying not to drip feed.

DS is 13 weeks and has been FF for past 7 weeks. 7 weeks ago we went to the Dr as DS was screaming during every feed. No sick and ok weight gain. Dr gave us baby gaviscon for Silent Reflux but told us to try Dr Brown's bottles too.

So we start the Gaviscon and Dr Brown's bottles at the same time. Notice a big difference, stomach gurgling and screaming stops.

Unfortunately the Gaviscon made DS very very constipated - so we halved the dosage to every other bottle. This doesn't help constipation, so I wean off Gaviscon but stay on Dr Brown's bottles and DS is fine for a few weeks. This led me to believe that it was just wind that was bothering DS, and that the new bottles are helping. Go back to see Dr who agrees and we leave it at that and Dr pushes for no more gaviscon to be prescribed.

Now I think this was a big mistake on my part, because 6 weeks later we have all the original symptoms again. But now poor DS is being sick and choking in the middle of the night too. I feel so awful for stopping the gaviscon. One night he was choking so badly that it scared the living daylights out of me [sad} I have his bed nest elevated at the head end.

At his 8 week check Dr said that he was underweight. I've taken him to the Drs about choking and asked about it being silent reflux but I got fobbed off. I asked for more gaviscon but they were very very reluctant to prescribe it, as it sounded to them like "normal fussy baby behaviour".

so...fast forward to today. DS normally takes 6oz bottles every 2-3 hours, but in the last 2 weeks he will only take half the bottle and then want the other half an hour or so later. Today he can't even take half a bottle, he screams and screams and then falls asleep. He has not had a full bottle since 7 am this morning. Since midnight he has had around 8ozs, when normally he will have a 6oz bottle every 2-3hours.

The past few nights I have found his sleeping bag soaked with sick .

Should I go back to Drs and demand medication? Also should I look into Aptimel relfux formula? Is it prescription only as I have not seen it in shops.

TIA - sorry this is so long, I'm just so worried that there is something wrong and that the Drs think I'm a typical first time mum!

[Ragusa]

How's the ranitidine going? Hope it's making a difference.

What is the concentration of the solution you've been given, e.g., how many mg/ml? 5ml per dose may or may not be a lot dependent on that factor.

[Blessyou]

Sorry, that was 0.4ml three times/day.

[Blessyou]

My DS started on 0.4ml
At nearly 3 years old, he is only on 2.5ml of 75mg/5ml ranitidine.

[crunchielover]

I used to give the meds using a dummy - a little bit in the syringe, then suck on the dummy, then a bit more syringe, then dummy...

[crunchielover]

Oh, this reminds me of the time I was at the Drs with DS, at my wits end as he wouldn't stop crying, so much so that they moved him up the queue!
He literally cried non-stop for hours and only slept for about 5 hours a night. I really feel for you. It's so hard to know what to do for the best when you are so tired.

Forgot to ask does your DS arch his back at all? This is another classic reflux behaviour.

Maybe it's worth trying to get an apt with a paediatrician who might have more specialised reflux advice - can you ask the GP for an urgent referral?

[FeelingHorse]

Thank you for the links, will have a read.

I did mention the allergy and tongue/lip tie but she said she wasn't an expert. Got to see how we get on with new meds then if no improvement investigate allergies and TT

It's 5ml....which I'm finding so hard to administer. He just spits the whole lot out ( I don't give him the 5ml all in one go!)

[Blessyou]

Good. Glad you were taken seriously. Hope it works for him.
Btw was it 5ml or 0.5ml?

[JiltedJohnsJulie]

Feeling did you discuss the possibility of tongue tie and cows milk protein intolerance? Have a read of this on Allergy UK and this on NHs.

Think the difficulty can be that tongue tie and an allergy can both have the same symptoms.

[Ragusa]

I hope the ranitidine works.
I am really glad you got listened to.
Did you mention about the milk protein allergy possibility?
How was your son before you moved him onto formula? Was he better on breastmilk?

[FeelingHorse]

Just got back and I've got to say that the Dr was very good and did take me seriously. It was a different Dr, a woman this time and she really listened to what I had to say

She put DS on Ranitidine, 5ml x 3 a day. She weighed him and he's only put on 10g in 4 weeks. I felt awful for not taking him to get weighed sooner, maybe I would have realised sooner.

Just administered first dose (which was spat out) so about to try again!

Thank you everyone, without you all I'm not sure I would have been brave enough to go back.

[Ragusa]

Let us know how you get on at the GP. They are not always brilliant at taking the feeding-related concerns of new mothers seriously IME.

[FeelingHorse]

Madame- it really does work. Probably a little too well....?

Bea- he has had a runny dirty nappy this morning, not sure if it is to do with the baby reflexology? Temp is normal.

So last night was just awful...a whole new ball game. Up every hour, taking a few sucks (probably for comfort?) and then crying until put on my chest. He slept on my chest for 2/3 hours towards early morning- but it began again once he woke up.

Since 9pm he has had 12ozs...at Drs at 10am.

DP has been useless- told me DC should start sleeping in his own room As if he thinks I'm letting a tiny baby in pain sleep in his own room? Plus I always wanted him in with us until 6 months at least!

DP just stood and looked at me as I tried to handle screaming baby and book a Drs appointment over the phone. I was crying, DS was crying....receptionist must have thought it was the mad house

[BeaWheesht]

Dd was like this, I had to feed her in her sleep, all the time.

She had a tongue tie but had it cut at 3 weeks - however her tongue was misshapen because of it so maybe that's why it didn't solve all our problems?

She definitely had reflux though and in fact is almost 3 now and all sick if she gets a fright / hurts herself / gags / drinks too quickly......

Fun! It does get easier. However have you checked your babies temperature? How are his nappies? Sorry if you've mentioned all this before am almost asleep here.

[MadameDefarge]

something I read on MN recently, reflexology can have, er, explosive effects on constipation....just a thought

[FeelingHorse]

Thank you everyone- I really appreciate your advice and personal stories. I am going to write this all down and take with me to the Drs in the morning.

The gaviscon vicious circle is in full swing. Max dosage is helping, but he is so miserable with constipation. I spent 25 minutes pumping his legs like a Mr Whippy ice cream machine earlier, trying to get things moving...!

I am currently gently bouncing DS in baby bjorn and he seems to be staying asleep- will it be ok for him to sleep in this in future? I have it in the centre of my King size bed.

Yes he is very very wriggly when I put him down to bed, being my first I thought it was normal he must have been so uncomfortable

I admire how you all got through those exhausting times- DS is not that bad yet...but it is getting worse by the day. Day time naps have gone from 3 x 90minutes plus to around 2x30 minutes and nighttime is going from 3 hours to an hour stretch. You have all coped so incredibly well, and if I ever get to a similar point I hope I can do as well as you all.

[Ragusa]

By 'giving it a trial' I mean hydrolysed formula, sorry, that wasn't very clear.

[Ragusa]

It's entirely possible that it's reflux with no milk allergy, but for us (unlike crunchielover) hydrolysate made all the difference in combination with Lansoprazole (like omeprazole). It's really worth giving it a short trial before going down the PPI drug route - although these drugs have a fairly benign side-effect profile in adults (as it goes), they are linked with bone density issues, and with increased prevalence of bacterial gut infections. They can be wonderful and lifesavers, but they aren't trifling.

[MadameDefarge]

also check for thrush.tiny white spots on the gum which can look like milk residue, but if you brush it gently might reveal slightly raw red looking patches.

worth looking out for.

[crunchielover]

Hi there, poor you and little DS!

I've had three DC with silent reflux - my first DS had it really really bad. Because he was my first it took ages to get him diagnosed and treated.

It sounds like silent reflux to me - does he wriggle and squirm a lot when you put him down? We ended up pacing around with DS in a baby carrier for hours to try and stop the crying.
Our 2 DD also had silent reflux but not as bad as our DS. All three of them also had tongue ties, although when these were snipped it didn't really make much difference to the reflux.

Here's what I've learnt from our silent reflux journey (hope it helps):

1. GP's will begin with gaviscon, this works really well at first, then causes constipation. Reducing the dose to stop the constipation brings the reflux back.
   
2. Ranitidine is the next step - this can be effective with moderate silent reflux but needs to be increased according to baby's weight. So if DC puts on weight you need to increase the dose or it stops working. We would ring the GP every fortnight with the baby's weight and amend the dose accordingly.
   
3. With really bad silent reflux (hours of screaming, little sleep, poor weight gain, generally very unhappy feeder) losec (omeprazole) is the best med. GP's are reluctant to give this as it's quite strong and seen as a last resort. Dosage also needs to be matched to DC's weight.
   
4. Special milks like nutramigen (horrible taste) and Enfamil AR (also caused constipation) did nothing for our DC. We did find that Enfamil O Lac (lactose free - available on prescription) helped a bit as it's easier to digest.
   
5. Cot/moses basket wedges can help - online baby reflux websites sell them, but wriggly babies have a tendency to slide down the cot!
   
6. Dummies help - they neutralise the acid and calm an unhappy baby.
   

Everything tends to get better around 6 months. This seems like ages away now, but try to hold on to the fact that things will improve!

Lots of luck xxx

[Blessyou]

In addition, CMP allergy and reflux often co-exist.

[Ragusa]

If the trouble started when formula was introduced, then I would strongly suspect cow's milk allergy (non-IgE type). Sometimes there is a bit of a delayed reaction.

It's effectively diagnosed by exclusion, and you'd need to try a hydrolysed formula such as nutramigen or the more palatable aptamil pepti. If your doc is awkward about prescribing it, you can get it OTC in boots on special order for a trial.

Not the same as lactose intolerance - which is rare. Milk protein allergy is not ever so.

Symptoms of CMPI are almost identical to reflux.

[stargirl1701]

The Peads consultant can prescribe omperazole (sp?) & domperidome (sp?)

[stargirl1701]

Dream feeds - when you feed them while they sleep - were the only feeds I could get into DD.

Are you a teacher? Me too

[stargirl1701]

It does get better. I promise. But, it can take a while.

We saw a huge improvement after 7 months. With silent reflux, time is the great healer. But, there are many medications that can help. The Paeds consultant was fantastic. She sorted out DD's meds for the silent reflux & eczema.

DD is tt too. But, by the time we realised I was ff. The NHS wouldn't do anything. I chose to relactate and mix fed her but they still wouldn't do the op.

You just need to do whatever helps to survive silent reflux. I found movement helped so I took circular bus journeys so DD could sleep in the pram and I could sleep on the bus seat. We had a friend babysit one evening a week so we could drive to a layby and sleep/cry/hug. We each had one night a week in the spare drugged out on Night Nurse. One night a month we got a night each away in a friend's house. We got a cleaner. I had a few houses I could turn up in and ask to be fed during the day. I walked the pram for 2x2hr every day.

The worst point was 4 & 5 months. DD would only sleep for 40 minutes. Then scream for 8-13 hours. Then sleep for max 40 minutes. It is, quite literally, the hardest thing I ever experienced.

Get the GP to take you seriously. It's only looking back, I realise just how ill DD was.

But, you will get through it. It will get better. I promise.

[Blessyou]

It gets better on meds