17 days old - reflux - at my wits end!!

[Halleberry]

My baby girl is only 17 days old. She has been diagnosed with reflux. All she does is cry I am living in literally no sleep because when I try to put her down she screams blue murder. We just got infant gaviscon and we were on SMA gold and switched to aptimal then was told to go back which we done but today has been a nightmare. She is in constant pain and I don't know what to do. Anyone any advice on what worked for them and can I use infacol Aswell to help with wind? I'm at my wits end xx

Hi, please go back to gp if she is still in constant pain. Does she thrash about in discomfort?

I had to take my son back 3 times as his reflux was so bad, in constant pain, thrashing about and no sleep. Got eventually diagnosed with Sandifer syndrome (Google it) and was given neocate formula and this helped massively and other medication to take. This helped so much!! You know your baby and if she's still in pain keep going back until you get a proper diagnosis or even turn up at A&E (this is where I got the professional diagnosis) as son was in so much bloody pain. Kept getting fobbed off oh just reflux and use gaviscon etc with gp.

Also have you raised mattress slightly, other thing I tried out of desperation was seeing a baby chiropractor who I had sessions with that helped. Have you tried doctor brown bottles??

I really feel for you

Omg never even heard of that now ive googled it and I'm in tears. It says mental impairment?? Does that mean my baby girl has mental handicap issues?? She does flail about and move her head and neck and arch her back etc, squints her eyes, flails her arms, looks like she is swueezing a poo when she isn't .... We have Dr Browns bottles, we have elevated her mattress, we have just started the gaviscon and use infacol too. Now I'm terrified that's what this is. How was your baby's outcome?? She also has periods o being very quiet then others of screaming xx

Reflux is brutal. My 16 week old has really improved but it was so hard in the early days. It's awful seeing them in pain. Mine was doing so well then her rotavirus vaccine last week set her right back to arching and thrashing.
Keep going back if it doesn't improve with meds. Gp has to give out the cheapest and usually least effective meds first so keep going back until you find one that works.
Xx

No no mental impairment!!! You must have read some strange extreme extend of it!!! Please don't worry it's a condition they grow out of and my boy is perfectly healthy happy intelligent boy he grew out of it by 1 years old.

Basically it's a severe form of reflux which caused the body to flap around, arch back etc in pain and cry for long extended periods.

Once they diagnose they issue medication and we had neocate milk and this almost virtually stopped it!!! He then went into cows milk at 1 and was fine!! Also when they move into solids it helps!

It might not even be this, but wanted to share my experience so you could maybe ask gp etc if it doesn't go away.

God I didn't mean to scare you and I don't know what you read!! Def no mental issues!!

Hope this helps and please ask and questions you might have Xxx

With the wind, I forgot to add that the baby chriropractor that we saw did these techniques and showed me how to these amazing movements that my gosh released so much wind that must be uncomfortable!! Might be worth looking into it, as it's baby not very expensive at all if you can afford it x

Dont lie baby flat ever - head above belly at all times. Raise mattress using a towel under same for sofa naps or moses basket. Usually the mussel at the top if the stomach doesnt close properly letting acid seep into throat hence crying. It goes at 6 months. Helps with wind. Changed baby in 2 days. I feel your pain - as baby is now very tired. Please try this and let us know.

Does she sleep better in the pram or car seat? Being more upright?

Have you got a sling? If no google local sling libraries and go and hire one!

Please please check check her (yourself) for tongue and lip tie. If she has this she will be gulping air as she feeds which will be extremely painful.

Here's how: www.mommypotamus.com/a-step-by-step-guide-to-diagnosing-tonguelip-ties/

Long term you may need to consider if she has cow's milk protein intolerance or lactose intolerance, in which case the formula will be making her worse. There are prescription formulas which don't contain these.

My son had reflux and we put him to sleep in a baby chair someone lent us. It was a rockable one but had a stand you could set so it didn't rock too. It made so much difference.
My DS was diagnosed with a milk allergy well, I self-diagnosed and he was a different child once he was on non-cow's milk formula.

My ds has severe reflux. Hes now nearly 5 and still has it but its extremely rare to do so at this age, so dont worry!

My top tips-
dont lie her flat on her back esp after a feed. Keep her upright.

While you are awake/watching over her lie her on her stomach- thats ds favourite position.

Buy the book colic solved by an american dr. Its absolutely brilliant.

Take her back to the gp for medication
Or when she ks in a lot of pain go to a+e and a paed can prescribe something for her.

You migjt want to try the anti reflux milk available otc.

small amounts of milk more frequently too.

And look after yourself!

Ah my daughter has tongue tie and I am convinced this contributed to get pain and gulping air.
Not sure if you're breast or bottle feeding (we gave up on breast feeding due to the tongue tie) but we moved to the mam anti colic bottles and that really helped with her gulping less air as the teats were much better shaped. Also I found colief made more difference than any of the reflux meds tbh n

On Wikipedia it says something about mental impairment? I just got a bit scared. She defo has the signs of this condition. The thrashing about and inability to settle. I mean she literally wakens every 2 hours and I'm like a zombie. Even when I finally get her down to sleep, when I close my eyes my heart is racing and I'm on edge just waiting to hear her crying again so then I am getting no sleep it's a vicious circle. What makes me saddest, is that I can't even enjoy my new baby. I love her but I can't enjoy her because nothing about listening to your baby cry all the time when she is awake is fun. NothiNg about any of this is fun. My stomach churns when I hear her make a spind bevause I just know she is due to wake up screaming AGAIN!! I really just don't know wat to do xx

Have you tried the things mentioned in the other posters comments? Also, as poster above says have checked for tongue tie?

Ring doctors and insist on another appointment. I know how distressing it can be for you and baby. If you have tried everything above and there are still issues insist that your baby is seen by a consultant at hospital if you are not happy with doctors or don't get anywhere with them.

If worst comes to worst and you don't get anywhere with GP turn up at A&E (feed her just before you go in) and let them see her! We did this and when they witnessed a full episode of it they immediately took us through and we saw a specialist consultant who instantly gave a diagnosis and we got the right medication and right milk Neocate (stripped of everything and is so gentle for their tummies).

If you have tried everything, Don't suffer any longer and go back to GP. If they aren't helpful go to A&E!

Xx

My god you sound so much like me when my son was born. You will start to enjoy it all, you just need to get the relflux under control and if needs be the right meds.

I promise it does get better Xx

Thanks for all responses. She sleeps better in her car seat and doesn't like her Moses basket. But I heard its dangerous to let them sleep in car seat for to log as can cut of air supply?? We have put towel under mattress. Bought Dr brown bottles. Changed her milk. Feed little and often. Gaviscon in her bottle and infacol before every feed. She still doesn't seem happy ... Ever!! I have the HV tomorrow so I'm hoping she can help. It's so frustrating. You have all these grandiose ideas of how wonderful it's going to be and then reflux strips it away. I already have bad mental health and this lack of sleep is not helping xxx

I wouldn't let her sleep in the car seat, it's not good to be in that for too long really.

You need to raise the head of her Moses basket and, as a PP said, head above belly whenever possible. A sling is great for this. Another PP mentioned a simple bouncy chair, also good. You also need to keep DD upright after a feed for much longer than you would a baby without reflux, wind, wind, and wind some more.

DD was a bit prem and had silent reflux due to an underdeveloped digestive system. As she grew her symptoms improved greatly and she was clear by about 12 weeks. I sympathise, it's truly exhausting, especially at night when you can't just pop them back in their beds as you need to wind them really well and keep them upright. DD slept sitting up with DH supporting her round the chest and holding her chin level.

The thrashing about and arching back are also symptoms of regular reflux so please try not to consult Dr Google ;)

Take care, it's very hard but it really will get better.

Stick in there. Is there anyone who can come and help watch little one so you can have a few hours sleep without disturbance. Do you have a partner, family or friend that could come over for day or a few hours so you can sleep.. Even if for just a few hours.

It will be wonderful, but because this period is distressing you can't envisage it. You just need to get the right help. If I'm totally honest although the HV will be aware and know about reflux etc, they do not know the extent to which GP or specialist would know. This is from my personal experience with HVs and MWs. If your little one is in distress today, insist on getting another GP appointment and explain to them that what you are doing so far and med you have is NOT working. Inform them that you have read up about sandifer syndrome and explain that little one has very similar symptoms (as you stated in your previous post) and see what they think! Also ask them about Neocate milk and see what that say.

Xx

I agree with others, the HV is not the person you need to see about reflux. You need to see a GP again and it's not unreasonable to insist on being seen today.

You've not responded to posts about tongue tie and lip tie but honestly, please check yourself and don't rely on GPs or HVs to know. It's not something the NHS is great at training GPs about in general. But it is a simple thing to see and very simple to treat. It could make a major difference to your baby's comfort and digestion. There are independent specialists who can check this kind of thing if you're not confident in what you're seeing.

Here's the link on what to look for

You have my sympathies - life with a reflux baby is impossible, but it does get better, and you are entitled to be bolshy with healthcare providers about this. It may be common but it is certainly not normal and if an adult was in that much pain it would be taken much more seriously.

My mother used to leave the baby in the garden and get on .... i left the baby in the house and stayed in the garden .... large cuppa in hand .., it was winter .... even 10 mins away helps. Takes a few days with the non flat sleeping to have some effect as you are in a pattern of not sleeping ... baby is over tired ..,. Keep going....

I'm not Breast feeding but she seems to have similar symptoms but they are all the same as colic and reflux to. She is only happy in my arms. She cries unless she js in my arms. And I mean she screams. I've just had a melt down. I can't stop crying because im so tired. My partner has a hectic job and works every day bar one. I have a 10 year old son also I need to be strong for. I don't have anyone to help me through the day and I have to do all night feeds cause my partner isn't home til late then he is up early to. I just don't know what to do xx

I'm calling the doctor again now. I'm gona lose my mind If I dont xx

I think that's wise OP. Don't hold back on telling them what it's like - especially since you are an experienced parent and you know it's not normal. The sleep deprivation does horrendous things to your equilibrium and confidence, but don't be fobbed off - you know this isn't just normal newborn behaviour. Video her if you need to.

Tongue and lip ties affect formula fed babies as well as bf babies. I bf but my daughter couldn't/wouldn't take a bottle and couldn't keep a dummy in her mouth. She had major problems weaning onto food until her ties were cut. We bf until she was 2 so by conventional accounts didn't have problems with her ties, but she had bloody awful colic/reflux, major problems sleeping (up crying, sometimes every 40 mins, definitely every two hours, until she was 12 months and didn't sleep through until she was two) etc.

Let's us know how you get on with GP.

You sound very understandably stressed. Please try and stay calm and remember that you are doing your best and you are going to get further help.

If no luck with your GP and you can't get an appointment etc, and you are really concerned your little one is in such distress take her to A&E and you will be seen by a consultant. Its obviously extremely distressing seeing little one in so much pain and discomfort (as you state) and I would be as distressed as you are witnessing it (if it was anything how my son was).. But you must try and remain calm for babies sake.

You are doing the right thing in trying to see GP and getting further medical advice.

Stick in there... xx

Video is good idea because they all seem cured the moment you get seen!!