Silent reflux (our own diagnosis) so many things tried, please help?

(29 Posts)
rachndan Mon 08-Feb-16 07:22:40

Hi all,

Well where to begin - please bare with me. Our DD is 4 weeks old on Wednesday and since day 1 of being at home she was and still is a terrible sleeper. She will only and has only settled whilst laying on me.

But after each feed (approx 20-30 mins after) she would start to scream really badly so we put it down to wind so we tried infacol and dentinox - neither seemed to help. At about 5 days old she started to throw back up the entire bottles so we were prescribed gaviscon which stopped the sick but made her constipated and her bowels quite hard and she then had blood in her stool. The blood in her stool resulted in a docs, then A&E then out of hours docs appointments which resulted in being diagnosed with CMA and put on Nutramigen and the gaviscon stopped. This resulted in the blood stopping and no more sick.

At 3 weeks old as there was still no difference with the screaming after feeding we were advised to try the gaviscon again but with the Nutramigen this time, the gaviscon just made her sick. The gaviscon has now been replaced by Ranitidine (0.2ml twice a day).

At 4 weeks old there is still not much difference to the screaming unless kept upright, or laying on my chest after feeding. Which leads me to think that it may be silent reflux.

We have a doctors appointment today but I just dont know where we go from here.

So far in her short 4 weeks of life we have gone from Cow & Gate to Nutramigen, from no gaviscon, to gaviscon, to not, to with to not. We have added Ranitidine, we have tried infacol and dentinox. We have gone from Tommee Tippee to Nuby to Dr Browns bottles. We have spent a small fortune. We have co-slept, we have tried swaddling, tried a Sleepyhead and tried cranial osteopathy.

We have probably tried too much too soon!

We have read up on silent reflux and one expert did a list of 10 different symptoms of it and our DD has at least 4 - the strangest one being lots of comments about how strong her neck is - which we and others have picked up on since birth as she can hold her head up on her own.

But our thoughts are -

1. Does she have CMA or CMPI which caused the screaming and blood in stool or is it silent reflux and the gaviscon making her constipated?
2. If so, does it matter that she is on Nutramigen (cheaper for us if she is).
3. Could she possibly be CMPI and need something like Nutramigen PureAmino or Neocate?
4. Does she need Ranitidine or would something like Cow & Gate Reflux help?
5. Do all these bottles really make any difference? The Dr Browns ones do make her burp more which we struggled with before.

We just want her to be able to settle after a feed, we want to be able to sleep more.

What else can we do? The doctors appointment is at 4pm today so we can discuss how she is following the prescription on Ranitidine from Friday. The docs are also referring us to a nutrionalist to see what sort of milk she needs to be on.

Sorry for the long post but so much has been tried I wanted to get it all done.

Thanks

rachndan Tue 09-Feb-16 07:26:10

Bump.

Seriously dont know what to do. Unless she is asleep or feeding she is crying. There is no cute awake content/happy baby.

Doctors said for us to see them again next Monday to see how things go. So thats another 7 days of the most unhappy baby going.

Its now 7.25. She was fed an hour or so ago. She is laying on me but just crying.

Thankfully she did sleep 9-1.30 and then 2.30-5.30 swaddled last night.

May09Bump Tue 09-Feb-16 07:39:47

Ranitidine took about two weeks to work for DS, ask about increasing the dosage. I would also try to swap to neocate formula and request some allergy testing.

Sleeping - try a wedge in the cot to keep her upright. We bought a concord rocker (which could be angled) and our DS slept in that next to me until the Ranitidine worked.

My DS was unhappy all the time too - its so bloody upsetting and tiring, he ended up having a load of allergies and my advice would be to test asap. I'm not sure whether they do it for young baby - DS was 4 months. Gaviscon also made DS constipated - which is identical symptoms to reflux.

slebmum1 Tue 09-Feb-16 07:46:58

Ranitidine takes time to work - a couple of weeks. It's shit but hang in there. It didn't stop mine projectile vomiting but it did stop them being in pain. They wills tart you on the lowest possible dose - this may need to be adjusted upwards. As they put on weight it also needs to be adjusted upwards. If it doesn't work omeprazole can be tried instead. In my experience the gps aren't great at this and if you can get a referral to a paediatrician it will help.

Other things you can do are tilting the cot / Moses basket and keeping upright for at least 20 mins after a feed and feeding at quite an upright angle.

A bit of a random one - swirl the formula to mix it don't shake it as that put loads of air in - didn't help the reflux but helped the wind.

We had cot wedges and I always covered them with a load of muslins so when they were sick I could just whip of the couple of top layers and didn't need to change the whole cot.

purplerainbow Tue 09-Feb-16 07:49:54

Both my ds's had very bad reflux. Ds1 would projectile vomit and ds2 had silent reflux. His oesophagi so was already damaged from the acid come up and then go down again. Both were on medications until age 1. Domoeridone and omeperazole. Tried ranitidine on both and both of them it made them worse. Ds1 I knew dairy made him worse as did soya, was given various different medicated formulas but he was so much better on nanny goat milk formula. He would actually keep the milk down. Ds2 had nutramigen and one that smelt of potatoes! I feel your pain. When changing I put a pillow underneath the top of the change may to keep propped up. Didn't jiggle them or pay their backs as this made the reflux worse as obviously the stomach contents would get wooshed about so just rubbing the back to wind them. I purchased an amby bed for ds1 which is like a special hammock. It was fab. Ds2 i used actual cot blocks you put under neath the legs that are head end. Not putting the down straight after a feed. Ds1 spent an awful lot of time on me sleeping but that was the only way to get sleep so I went with it.

I'm not suggesting any of this is a cure, just my experience with my 2. flowers

rachndan Tue 09-Feb-16 09:45:36

Thanks all. She has been on it since Friday so perhaps a while longer to see its effects.

The doctor has put us forward for allergy testing, just waiting on appointment.

I just dont know what else to do, as I say if she is awake she is crying or cries every couple of minutes. For example she is sitting up on me, nice and quiet and every 5 or so mins just starts wriggling and crying in pain. Feed was more than an hour ago but hasnt been laid down since.

We were considering taking her to A&E but we have HV here on Fri and docs on Mon so maybe worth waiting until then or giving it a couple more days?

Was nothing like this with DD1.

Roonerspism Tue 09-Feb-16 09:49:55

You poor thing.

- ask for nutamigen pureamino. My baby reacted to normal nutramigen and Neicate.
- ask for the max dose for ranitidine appropriate for weight. Try to space the doses in three when most needed - say afternoon, 11pm and 3am
- try a herbal supplement called Slippery Elm. You can buy it online from a company called Napiers. You mix it with a little water. It costs the oesophagus and promotes healing

slebmum1 Tue 09-Feb-16 09:53:10

I just remembered with the ranitidine when we were in NICU the nurses said to try and time it about 45 mins before a feed if you can - I appreciate that's difficult with a tiny baby!

rachndan Tue 09-Feb-16 21:37:42

How long does ranitidine take to work? She has been on it since Friday (2 x 0.2ml per day).

Also should I look at getting a tin of Nutramigen PurAmino myself and see if that change to the PurAmino version makes a difference and take the findings to the docs if it does to get it prescribed?

Just hate seeing her in pain.

slebmum1 Wed 10-Feb-16 07:32:35

Mine from when they were a week old on were on ranitidine from when they were a week old - they were in NICU and 3.1lb and 3.3lb, they had it four times a day and it takes a couple of weeks to start working properly. I can't remember the dose and it depends on the concentration anyway. I'm NOT in any way suggesting you up the dose but they will start her on the lowest dose possible - you need to give it another week or so.

I wouldn't get the nutramigen without medical advice either.

It is really difficult but you need to wait it out a little longer. Has she got a relatively upright bouncy chair she can nap in?

rachndan Wed 10-Feb-16 11:46:57

She just hates being put down.

Last night she fell asleep on my chest, was swaddled and put down and slept 9-1.30am, then 1.30am she was fed, fell asleep on me as I kept her upright, tried swaddling again she was having none of it.

Then absolute tears after that.

Its horrible seeing her in obvious pain.

rachndan Thu 11-Feb-16 19:33:11

Still awful. Worse in the evening. She seems so tired yet wont sleep.

jellybelly8 Sat 20-Feb-16 08:09:11

Rachndan, how's it going?

I'm in a very similar situation and can relate to how awful it is, heart breaking, exhausting and a real test of my last smidge of sanity. No tips from me I'm afraid just a bit of moral support.

Have you made progress since the appointments? Are you seeing an improvement having been on the ranitidine slightly longer?

flowers cake I'm sure you're doing an amazing job, hope things are improving

ohisay Sat 20-Feb-16 08:27:49

Omeprezole plus carobel to thicken the milk finally gave relief for us!
You have my sympathy it was a horrible time.

rachndan Sat 20-Feb-16 18:06:48

Not better at all really. She is now on 0.25ml of ranitidine twice a day. It used to settle her as soon as given but not any more.

I took the plunge and bought a couple of tins of nutramigen puramino (to rule that out) they arrived today so need to see if that has any effect ahead of the next docs appointment on 29th.

If that doesnt sort it then I have no idea what next? Maybe that domperidone.

rachndan Sat 20-Feb-16 19:04:19

We just dont get what is wrong.

We have extreme tears after her 7/8am feed, then is normally fine after everything other feed until about the 6/7pm feed and then whinges after each feed again until mid morning the next day.

We are on such a small dose of ranitidine, not sure if she needs more or not sure if it isnt working. Not sure if she needs gaviscon instead of or as well as (we still have some in the cupboard).

Its just extremely draining especially as it happens in the evenings/at nights.

rachndan Sat 20-Feb-16 19:06:00

Jellybelly8 what are you doing to help your situation?

jellybelly8 Sat 20-Feb-16 19:58:22

We have been prescribed gaviscon but not using it now as could not see a difference and was hell trying to get it into her (ebf because she won't go near a bloody bottle). Waiting currently for a hospital apt in order to get a formal diagnosis (assuming that it's silent reflux) and hopefully be prescribed something magical.

Otherwise, we just muddle through each day, normally with lots of tears from Dd and a fair share of my own. We do the usual keeping her upright, not jiggling too much, tried cranial osteopathy, currently dairy free.... The usual stuff but I'm afraid when she is in pain she is virtually inconsolable. Sorry- no advice. The whole thing has been a battle really to even get this far.

Roonerspism Sat 20-Feb-16 20:13:22

Can you max the ranitidine and space out the doses so there is one at last feed and one overnight?

My child reacts to gluten, dairy, soy, citrus, onion, ascorbic acid, garlic, chocolate and onion. She is becoming better with the last 6

Kim82 Sat 20-Feb-16 20:19:54

Your dd sounds very similar to mine. Changing to nutramigen and ranitidine didn't really make much difference. She was changed onto Nutramigen PureAmino and omeprazole and within a week she was a different baby! The ranitidine just didn't seem to touch her reflux and didn't help at all but we noticed a difference with the omeprazole within 3 days. The dose did need to be upped as she got older to 20mg a day and she has, just these last 2 days actually, stopped taking it at 19 months.

Keep taking your dd back if you're not happy, we ended up in A&E as the screaming just wouldn't stop and it was the best thing we ever did.

Good luck, I hope your dd starts feeling better soon.

madwomanbackintheattic Sat 20-Feb-16 20:20:48

Ours got a lot better at the weaning stage (two out of three anyway). Appreciate it's a bit of a slog though!!
The other one was tube fed, but no reflux. When we moved her to a bottle we had to feed her only at night - she couldn't feed in the day as when she was 'awake' she couldn't coordinate sucking and breathing. We had an immediate access prescription available for the aspiration until she was two lol.

You do come out the other side eventually - hang in there xx

5minutestobed Sat 20-Feb-16 20:27:14

Second the Carobel, that stuff is great, you can get it on prescription or you can buy it on Amazon.
Any word on a referral to see a paediatrician? Try not to change too much at once, I know its tempting but you need to give things a chance to work.
Have you got a wedge for the cot? Or prop it up on books? Ds's cot was propped up until he was 2! Reflux is awful but you will get through it!

Acorncat Sat 20-Feb-16 20:38:52

I'm sure ranitidine should be 3 times a day until 6 months, 0.25ml is still a tiny dose unless she doesn't weigh much of course. Mine started it at 4 weeks in 0.3ml but that was quickly upped to the maximum dose (3mg/kg) before we saw any improvements. He's been on 2.5ml since he reached 20lbs. We basically never laid DS flat - changed him on an incline (and never raised his legs, just rolled to each side to wipe), he slept on my chest for months, he's bf so I cut out all dairy, soya and anything acidic, used the sling a lot, kept properly upright 30 mins after each feed. He's a lot better now at 17m but is still dairy and soya free and has bad nights if he has certain foods.

Keep going back to the gp, get a referral to pediatrics - they'll give higher doses of medication to see if that helps.

rachndan Sun 21-Feb-16 15:26:24

We took a trip to a&e this morning. The docs recommend we stick with normal nutramigen and has increased the ranitidine to 0.5ml 3 times per day.

They seem to think its more reflux / stomach acid than CMA.

They may be right. We only got diagnosed with CMA as she had blood in her nappy following constipation (we think from gaviscon).

Perhaps she doesnt have CMA but for now we need stick to nutramigen and the increased dosage of raniditine for next few weeks.

rachndan Mon 22-Feb-16 14:46:08

Feel very let down.

After our increased dose of ranitidine following yesterdays a&e she started going off her feeds so we took another trip back to the hospital today but this time to the baby unit. Typical as it would be she did a whole feed whilst we were there.

They agreed to give us two other meds to go in addition to the ranitidine, one was domperidone and the other i cant recall. We thought great, finally getting somewhere. They go off to do paperwork and then come back and said they had changed their mind and wanted us to see how the increased dose of ranitidine goes and to come back in a few weeks.

Give with one hand then take away with the other.

I appreciate we dont want DD2 to have unnecessary medicine but perhaps if we were given correct dose of ranitidine 2 weeks ago we wouldnt be where we are.

Bet we end up being given those extra meds in a few weeks subjecting us to lots of baby tears and screams between now and then.

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