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Silent reflux help :(

15 replies

Strawberry678 · 24/03/2014 16:59

I wasn't sure if this was the right place to put this but here we go.
My daughter is now 4 and a half months old weighing 16 pounds.
She's always shown signs of reflux but as soon as she hit 3 months things got bad.
She was screaming when feeding constantly swallowing, refusing to return to feeds and getting hiccups throwing herself backwards only way I can describe. Hates being lay flat.
She comfort feeds a lot to ease herself from the pain she can't wait hours inbetween feeds otherwise she will just scream and not eat at all.
She can spend hours crying. I've took numerous videos of her being like this, she sleeps in the car seat stopped sleeping in the day and wakes up at night sounding like she's in pain.
I went to the doctor who gave gaviscon which worked for 3 days then suddenly stopped working, we switched to a thick anti reflux milk and it took the edge of it but now it's basically the same as normal milk.
We were referred to a specialist today who basically told me I was overfeeding my baby and I'm not coping! I only burst into tears because she said she didn't believe my daughter had a problem and wen I showed her the videos she wasn't even looking.
Can anyone please help me? I'm in need of advice and feeling like there is no hope. I hate seeing my little girl in agony :(

OP posts:
sleepisforthetired · 24/03/2014 17:25

Sorry you seem to be having such a bad time of it, its so difficult when they want help but as parents we are not sure what it is they are after.

The couple of friends who had refluxy babies all say something slightly different as to what helps.

My ds was diagnosed at only a few days, due to other problems. He was put on Domperidone and Ranitidine (dosage was done by his weight).

He was still uncomfortable at times, but far better. We reduced then removed medication when weaning, in line with the advice we received, but I do highlight this is our experience, however it DID work for him, so maybe worth asking a professional?

Other things it sounds like you are doing, although just one point, and I appreciate how hard it is trying to do what is best, but car seats are not recommened for overnight sleep (sorry if I read this wrong).

Are you still under the HV? I was shown how to support sleeping not flat on his back safely (shown in hospital and supported as I was so nervous after he was discharged as wasn't the "right" way as per internet and books!)

How much does your baby drink, and how often?

Strawberry678 · 24/03/2014 18:20

Thanks for your reply, and yes sorry about the car seat should of explained better in the day she sleeps in that otherwise she doesn't sleep at all, but I watch her have her in front of me but we have ordered something for the cot which elevates them just waiting on it. And no not with HV anymore, and she never drinks a fixed amount, always varies some days by 6 she's only drank 9 oz other days she'll eat 2 oz then another 2 oz as if she's easing her pain especially if she has hiccups she'll snack. She seems to feed perfectly fine if she's asleep or drowsy( apparently dream feeding is less painful)

And that's good you finally got it sorted! I think I will be getting a second opinion as can't go on like this, I'm just annoyed she would prescribe anything and told me some babies are just fussy, when I know they're is clearly something wrong with my baby :(

OP posts:
AllergyMums · 24/03/2014 19:11

We had something similar so hugs. I know it's hard. DD only slept when DH took her out in the pram (from 3am-5am so I could sleep) and she's sleep then but not lying down as she'd scream.
Ranitidine helped, small feeds, frequently helped too.
Coughing from reflux made her sick buts she's asmathic too so she was on inhalers from 6 months which helped a bit.
Dairy, tomatoes, sugar all set off reflux for her so when I breast fed I had a limited diet. For us diet was the key.
We kept a diary of what I ate, how sick she was. It helped id the triggers.

dylsmimi · 24/03/2014 19:21

Poor you. Ds2 has/had silent reflux and i had 8mths of being fobbed off by hvs and then a dr just dismissing it. I knew something was wrong with him. He was eventually prescribed rantitidine which helped.
also to try is elwvating the cot with books under 2 legs and i used a sling (try your sling libray to find a comfy one). This kept him upright after a feed/food and i could get on with things and he would sleep in there. That may help?
your daughter may be feeding not through hunger but to ease her throat if the acid is hurting it. Ds was the same but as breastfeeding hard to tell how much but felt constant at night.
you will both get though this - can you have a day away or a night away to get some rest? Even an hr or two may help
good luck

sleepisforthetired · 25/03/2014 08:28

Just to be clear - I am not judging re car seat - God knows I live in a glass house Grin was only mentioning it

I asked the doctors to just keep ds and give him back when "he is fixed" (at 4 days old!) - 4 days of knowing something was wrong and being "fobbed off" and I cracked.

Its so difficult when you're being told there is nothing wrong but you can feel something isn't right.

Get a second opinion.

What have you ordered? Is it the cocoon thing? I looked at that but ds was a jolly giant once he actually started gaining weight, so wouldn't have been worth the expense.

We used books under the legs of crib, and a small had towel folded slightly under the mattress of the crib.

Only created a slight incline but just enough to help. He was also sleeping in a different position, not flat on back - however at 4 months I am assuming your daughter makes her own mind as to how she sleeps :)

Does your daughter look for you when she falls asleep during the day?

During the day, DS slept in a Chicco chair which could be reclined almost flat, but we were able to keep a small incline (I really rate the chair, as have the people I have loaned it to over the last 2 years). He is a nosy little beast, so like to be able to see around. Again, this helped keep him calm and sounds similar to what you are doing with the car seat. Fisher Price do a toddler chair which can still be tipped back. the "little" chairs suitable from early on may not be suitable, as certain we stopped using it when her was trying to sit up for fear of him toppling it over. The fisher price one is far more sturdy and could get one on ebay as cover is machine washable.

I used to sit on the floor facing him (leaning on the chair as always so tired!) one hand on his leg and watched box sets on the telly (TV behind him). Enough to remind him I was there, and I didn't feel stressed trying to soothe him for what felt like hours at a time knowing he needed to nap.

Strawberry678 · 25/03/2014 08:51

Thanks everyone for your support, last night was another bad night and I'm trying so hard to stick to that specialists advice about not feeding her as often but all that happend was she cried non stop for 3 hours until she got sick then drank 2 oz then started crying at the bottle! So she was up all night, think that specialist gave me the wrong advice and I can't stick to it it's not fair on my little girl.

Thanks for the sling idea, I will be getting one as she loves to sleep upright on me, and thank you I think I will keep a diary of how much she eats and when just back up my case more.

That's ok I know what you mean about the carseat, the thing I've ordered looks like a big block of cheese which sits in the cot if that makes sense looks quite good. Think it's called a cot wedge. I will be looking into some chairs so thank you for the idea :)

I've made a telephone appointment for this morning to see if thy do anything didnt want to drag her out again, she's been so upset this morning :/
I hope I get through to them this morning!

OP posts:
sleepisforthetired · 25/03/2014 09:00

fisher price chair - loads on ebay - this is the one we have, and it doesn't tip forwards. There are others similar. the material cover comes off completely so can be washed (always my biggest concern if not brand new!)

It does get easier :)

dylsmimi · 25/03/2014 20:55

Good luck. I printed off the list of silent reflux symptoms and pointed out that ds had all of them! But obviously this was later on than you are now.
keep going till you get someone to listen to you
i definitely think the feeding so much is for comfort & you can tell its not a hunger cry. We decided to be strict with ds with his 10pm feed as we knew he wasn't hungry & thought just habit but realised he was in pain.
our pram inclined slightly so ds slept in there alot.
i hope today went well

btw don't get a baby bjorn - they are really uncomfy for you and the baby. Try to find one that holds your dd in the "froggy" legs position and facing you. If you are both comfortable you will use it more. Plus once she is asleep you can have a sit down while she sleeps!

Strawberry678 · 26/03/2014 12:33

Thank you everyone :) and thank you for all the advice, doctors went well and she's now on Ranitidine so fingers crossed will be starting it tomorrow :) hope you are all well!

OP posts:
dylsmimi · 27/03/2014 00:26

That's good. Hopefully it will work for her. From what i remember it can take a little while to work and you may need to get the dose increased as she grows as its done by weight

AllergyMums · 27/03/2014 13:51

Glad you got some help finally. Ranitidine really did help dd; but as mimi says you have to get the dose adjusted as they grown. DD now 9 and we've had to up the dose when things go wrong.

GingerMaman · 27/03/2014 15:09

Poor you. My DD also had silent reflux and it was agony. Two weeks on medication and was a different baby. Give it two weeks and hopefully you'll see a massive improvement.

GingerMaman · 27/03/2014 15:10

I also stopped eating tomatoes and anything citrus. And also went dairy free too for a while. All worth a try.

Flicktheswitch · 27/03/2014 15:13

This reply has been deleted

Message withdrawn at poster's request.

isitme1 · 27/03/2014 15:18

I've not read the full thread.
1st the chair that has been linked above it does tip forward

another thing is please push to see another specialist. Where are you? If you are anywhere near Sheffield then I would ask for a referral to see dr Thomson or if you can afford it then see him private. He sorted my ds out.
Ds is 4 in sept and still refluxs but not as bad as what it was. He is now tube fed and is on different meds.

Keep dc upright as possible. It was recommended I started weaning him at that age (4and half) as milk comes up easier than solids.
Cant put too much down now but will come back with more info.....

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