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

(36 Posts)
FeelingHorse Thu 27-Jun-13 13:42:35

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". 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 sad.

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!

FeelingHorse Thu 27-Jun-13 13:46:12

Oh also he has been asleep for most of the day.

We were up at the hospital last night (another story...!) and DS was asleep in his car seat and did not wake up for his usual 2/3 night feeds, which makes me think that he is far more comfortable upright?

The only time he has been this sleepy was after his jabs.

JiltedJohnsJulie Thu 27-Jun-13 17:11:16

How is he now horse? Has he fed yet? Have you been to the GP? Just wondering if he's been checked for tongue tie and has the GP suggested any allergy testing? Maybe 2 things to look into smile

Blessyou Thu 27-Jun-13 17:23:24

Just wrote and lost long reply.

In short, yes, sounds like reflux.

Other meds can be tried eg ranitidine, domperidone

Go your gp with list of symptoms (pain during feeds, refusing feeds then feeding short time later, more settled upright) and signs (underweight, sick in night, choking in night), if not willing to try other meds ask for paed referral.

FeelingHorse Thu 27-Jun-13 17:47:46

Thanks for replying Jilted and Blessyou

He finally took 4 oz at 2pm, without fuss but cried afterwards. He has been sleeping upright in his bouncer every since.

Jilted I have heard of tongue tie, but have never checked. I will check him once he is asleep, that link was very helpful - thank you. We really struggled to BF in the early weeks, which was so stressful for us both.

Bless you Thank you. I do need to list all the symptoms before the Dr cuts me off with "sounds like normal fussiness". I didn't realise I could ask for a referral, thank you!

I'm not sure if it's also worth mentioning to Dr but he is very gurgly (sp?) s though he has a mouth full of phlegm. It sounds as though he needs a good cough, but he doesn't have a cold.

FeelingHorse Thu 27-Jun-13 17:48:27

*will check when awake. Seriously sleep deprived!

stargirl1701 Thu 27-Jun-13 17:51:49

You can ask for Ranitidine next. It is available at 3 dosing levels - keep going back to the GP until the symptoms are under control.

I saw 6 GPs in 8 days with DD till I finally got a Paediatric referral for her silent reflux. Persistence works.

FeelingHorse Thu 27-Jun-13 18:40:32

The tongue tie article is very interesting Jilted.

If you look under your tongue, you might see it is attached to the floor of your mouth with what is called a lingual frenum or frenulum. This “string” is left over tissue from facial development and typically works its way back down the tongue during pregnancy, reducing to insignificance before birth. Sometimes this doesn’t happen and ties can also occur on upper or lower lips, gums and cheeks.

I have just remembered that when I was 14, my orthodontist removed my large frenulum between my top gum and upper lip. It was huge apparently. Just spoken to my mum and she confirmed I was an awful feeder, and had awful reflux - I'd projectile vomit several times a night apparently....

Just checked DS upper gum/lip and he has a very large one like I did. Couldn't get to his tongue though. And of course I'm not an expert, so could be looking for the wrong things...?

JiltedJohnsJulie Thu 27-Jun-13 19:25:47

Lip tie and tongue tie usually run in families, know that both me and DS have both, cue screaming for months, reflux like symptons, speech therapy later and I won't tell you how old he was before he slept through...

Milk matters do a virtual diagnosis service and at least if you have other babies you'll know what might be the problem. My dc2 was fine though, fed for 10 mins every 3 hours, it was bliss after dc1 smile

FeelingHorse Thu 27-Jun-13 21:34:05

Star that sounds awful- is your DD ok now? What medication is she on?

Jilted, did you get the tongue tie cut in your DC? If so how old?

FeelingHorse Thu 27-Jun-13 21:38:03

Stupid phone...!

If so how old and did you an improvement? DS sleep is getting worse as time goes on, tonight he is with us in living room sleeping on his dad. Of course I'm not going to leave him if he is unhappy or in pain- I'll always cuddle to sleep. Just worried as I go back to teaching soon, and wondering if sleep will get worse before it gets better?

Please tell me it gets better? smile

Blessyou Thu 27-Jun-13 21:48:24

It gets better on meds smile

stargirl1701 Thu 27-Jun-13 21:49:01

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.

stargirl1701 Thu 27-Jun-13 21:50:55

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

Are you a teacher? Me too grin

stargirl1701 Thu 27-Jun-13 21:52:55

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

Ragusa Thu 27-Jun-13 22:11:17

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.

Blessyou Thu 27-Jun-13 22:44:54

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

crunchielover Thu 27-Jun-13 22:50:01

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

MadameDefarge Thu 27-Jun-13 23:04:45

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.

Ragusa Thu 27-Jun-13 23:08:57

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.

Ragusa Thu 27-Jun-13 23:09:37

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

FeelingHorse Thu 27-Jun-13 23:50:03

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 blush he must have been so uncomfortable sad

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.

MadameDefarge Fri 28-Jun-13 00:24:26

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

BeaWheesht Fri 28-Jun-13 00:46:43

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.

FeelingHorse Fri 28-Jun-13 09:07:55

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 Drs at 10am.

DP has been useless- told me DC should start sleeping in his own room hmm 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 sad

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