Reflux causing baby so much pain, at a loss

[laura2323]

Before I start dd is ff as breastfeeding did not worked, she wouldn't latch on (no tt), no support from LLL (no one in my area) or any breastfeeding support group (nearest one 15miles away).

So last Friday my GP finally agreed with me that my 13 week old dd has reflux, (the nurse who did her Injections gave us baby gaviscon because she also agreed) and that's only after seeing her projectile vomit across his room!! The gaviscon made her worse not better. He immediately rang up the children's hospital and we got sent to a&e.
She was examined and the Drs at the hospital wanted an ultrasound scan to make sure she didn't have a thickening of the muscle (forgot the name of it begins with a p!). They sent us home telling us to give her plain bottles I.e no gaviscon, coleif etc and to ride it out until the scan.
We had he scan on Monday thankfully it's all clear, though you could see all the trapped wind (she is refusing to burp and when she does she screams in agony).The nurse who did the scan told us to go back to a&e and wait to see a doctor to talk about our options I.e allergy testing etc.
So we wait 4 HOURS in an empty a&e waiting room to be called in (there was approximately 20 staff and 1 other patient in there! But that's anther story). Anyway the doctor there said we needn't have waited and need to see GP, a referral letter has been sent to a consultant for allergy testing which could take up to 6.WEEKS! They sent us home. No medication again telling us to give her plain bottles.
I took her back to a&e today and all they said was to wait for allergy testing! Unless she starts to lose weight they will just keep sending me home.
I am at my wits end, it's heartbreaking to hear her screaming in agony, she is vomiting after every feed still and then cryin in hunger straight away. I don't want to give her more as don't want to over feed her so am giving her little and often 3oz every 1 1/2 hrs rather than 6oz every 3/4 hrs.
She cannot lie flat or on her side, she is only happy lying on her front on my chest.
I haven't slept for more than 1 hr in 6 weeks, I have no family support apart from DP who works 14 hr days. He does brilliantly when he comes home but dd only wants me and will only sleep/settle on me. I am physically emotionally and mentally drained.
She will not go in a sling/carrier, tried tiger in the tree hold, can't put her in pram as when lie her flat she screams and throws up, tried taking her for a drive in her car seat and again screams blue murder. I don't know what to do. I have a GP appointment for tomorrow but they've said they only prescribe gaviscon to babies!

Is there anything I can do to ease her pain?! Sorry for the essay needed to get it off my chest! X

Go back to your GP. There are much more effective medicines than gaviscon. Ranitidine, domperidone and losec to name a few
Am actually angry on your behalf, I had to fight for months to get proper medication for ds when he was a baby and it's awful to see them in so much pain. I'll never understand why GP's don't take this more seriously, it's incredibly common in babies due to their underdeveloped sphincter.
Meanwhile keep your baby upright as much as possible, prop up head end of cot etc.

I had a similar experience to you, being unable to bf etc, not the a and e stuff though.

I remember the feeling of not sleeping for weeks :( . We couldn't use the pram, cot, car seat or anything, or she would scream terribly. I did buy a buggy which had a seat that could be adjusted to any angle, so she was nearly upright, not safe for walking, but the only way we could put her down in the house. I was like a zombie.

The only thing that worked for us was keeping DD as upright as possible, and walking with her and patting her back etc. She got slightly better as she got older, but the breakthrough came when she was able to roll over. She would roll onto her tummy and then sort of kneel with her head down and sleep like that. Can't remember how old she was though.

I hope you find something that helps. :)

It's making me so mad I've been pushing for weeks to get her allergy tested as I am the only one in my family who has no allergies! Tried her on lactose free and soy milks since she was born but she threw up more and lost weight on them! Now on aptimal milk as it got recommended to me for reflux babies. I suffer from bad heartburn so I really feel for her. Her cries are high pitched and you can see she's in pain but the dr just dismisses me as a "nervous" mum. I actually saw this on her hospital admittance record as "reason for admittance",

What! That's shocking. In the end I took in a book I had read, wish I could remember which one, which stated all the symptoms of silent reflux, every one of which my ds had.
If you get no joy tomorrow, immediately ask for a second opinion, the comment about only being able to give gaviscon is utter rubbish.

I've videoed her when she's been crying to show them what she's like when at home. Thanks for the replies x

That's a very good idea, ask them to watch it for 12 hours solid so they get the full picture .
Good luck.

If GP is dismissive again demand to see someone else I know easier said then done when your so exhausted but it's terrible that your (and other) babies are being left in pain when there's clearly a big problem. As others have said there's plenty more they can give other then gaviscon.