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

28 replies

rachndan · 08/02/2016 07:22

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 The gaviscon has now been replaced by Ranitidine (0.2ml twice a day).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.

OP posts:
rachndan · 22/02/2016 19:29

She has now started refusing her feeds. And is just constantly crying.

Just dont know what to do. She wasnt like this at the hospital so hard for them to see what we mean.

OP posts:
Acorncat · 22/02/2016 20:21

Will she feed in her sleep? When my DS was at his worst I had to feed him as soon as he started to root as he woke up, he'd take a feed then but no chance if he was awake, even if I missed that window by a few seconds. I'd carry him in the sling until he was asleep. I'm not sure if that would work for formula, mine is/was bfed. We did that for weeks until the medication kicked in properly.

Also, film her so you can show the doctors what she's like at her worst.

rachndan · 22/02/2016 20:40

She wont feed asleep she gives up.

We are just constantly having periods of pure fits, followed by being completely settled, followed by massive outburst. Every few minutes.

She wouldnt take her last feed.

I have plenty of videos to show them.

OP posts:
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