The Parenting Guide for refluxy/intolerant babies

[hobnob57]

As the parent of 2 refluxy and intolerant DDs who has just had the week from hell with DD2 (5 mths), I wondered if it would be a good idea to collate some MN words of wisdom for mums new to the whole experience. You know, the kind of things that you just don't find apply to your situation in most ordinary parenting books.

A bit of background: DD1 was a silent refluxer, diagnosed at 6 weeks, EBF until we introduced daytime Pepti from 6 months. BF until a year. Over the first 6 months we worked out she was intolerant to dairy and gluten/wheat (never worked out which). She struggled to maintain her centiles, had explosive vinegary nappies, and didn't sleep through until she was 9 mths. She was under the gasro at the hospital until she was 3.

DD2 is intolerant to most nice things to eat (dairy, soy, gluten/wheat, eggs, nuts) and had nasty wind issues. She is on omeprazole for reflux and under the gastro too.

As I was trying to get DD2 back to sleep at 2:30am this morning it struck me that I'd like to have known that Normal Rules Don't Apply to refluxers 1st time around before trying in vain and through tears to apply sleep solutions to DD1. So, here are my words of wisdom:

• BF refluxers will feed and feed and feed from you at all hours of the day and night. Not because they are hungry, but because they need to suck to feel comforted and relieved of pain. This is OK and you are not spoiling them (if not worn out and a bit averse to being sucked on at times).

• as a result, trying to impose feeding/nap routines is a bit pointless and will more than likely result in you feeling a failure so don't even bother trying.

• the constant sucking does end at about 12 weeks when they find their fingers/thumb and that will be a momentous day for you.

• the idea of a nap routine becomes very attractive at about 4 or 5 months but still may be beyond your LO depending on the severity of their symptoms. DD2's incessant sore tummies from wind wake her up constantly.

• Normal Rules Don't Apply to refluxers in terms of: co-sleeping - this is a godsend for the sucky baby and will save your sanity; tummy sleeping - we've recently discovered that DD2 will stay asleep much longer when put to sleep on her tummy; night waking - when in pain, normal methods of returning your LO to sleep don't apply and will result in tears all round. You've got to go with your instincts on this one for as long as it takes.

In terms of Intolerants, I have found the following helpful:

• when giving up something in your diet for a BF baby, expect cold turkey withdrawl symptoms for at least 2 weeks.

• marmite is an excellent replacement for stock cubes, balsamic vinegar for Lea & Perrins.

• make chocolate from coconut oil to save your sanity

Any other pearls of wisdom welcome.

Good idea. So true that normal rules don't apply.

Best things I learned with v low centile refluxy baby: If they are sick all the time, feed them all the time. My natural instinct was to let his tummy rest but he was too small. He needed topping up immediately and often kept the second feed down.

Burp them sitting up on your lap, even when they are tiny. Over the shoulder can put too much pressure on the tummy and it all comes up again.

Baby massage is worth doing - there's an anti wind/colic massage I still use on my two, seven years on. It works like magic at breaking up hard, painful pockets of trapped wind.

If your child really isn't thriving - ignore all rules. Just feed them when they or you want, and let them eat anything. Better to have a poor diet than no diet. Sounds extreme but it worked for us and now my son who lived on nothing but blueberry baby rice and humous for three years, has a really healthy appetite.

it is not unheard of for DD2 to get less than half the 'recommended' number of hours of sleep a day.

Thanks for this I've got two exactly the same.

For daytime sleep - do not worry about getting them to nap in their cot - get them to sleep any the hell way you can (one of mine slept completely upright in the baby back carrier placed on the floor propped up with cushions )

-They will not stop crying when you pick them up. This is NOT your fault.

-They may also hate being on their tummy (my youngest vomits if anything so much as touches his tummy). Sod tummy time - they won't sleep enough to get a flat head anyway love.

-Somehow they may magically have no long-term spinal development problems even if they never lie flat.

-Following from what Hobnob said, when they chew their hands constantly from about 12 weeks, contrary to what everyone will say they are NOT hungry or teething - it helps soothe their throats / stomach.

-You do not have to go to baby groups if you don't want to. If you'd prefer to sit feeding your screaming baby for four hours in front of daytime TV on full blast, no one will suffer any long-term damage.

HTH good idea Hobnob57.

As I sit here feeding dd2 in a vain attempt to stop her writhing, it all sounds so familiar. Thanks ladies. Another one:

• if you have to leave you LO screaming and go and have an extended cuppa you are not a Bad Mum. Nothing you do will probably stop the screaming and you are probably saving your child from GBH, which, IMO makes you a Good Mum. Sod what the neighbours think.

hobnob57 I feel your pain.

I have had two with reflux too. I have nrly 3 year old DS and 4.5 month old DD.

DS wasn't diagnosed until 5 months old. I struggled with feeding then gave up at around 5 months just before he was diagnosed. He didn't have any other issues and went happily onto formula.

DD I knew was refluxy by 5/6 weeks and was eventually put onto Omeprazole and Domperidone but still seemed unsettled and sometimes still hard to feed.

Just out of interest, (she became windy with painful wind and bad smelling nappies)I went onto dairy free diet for 3 weeks, after 9 days she was great, no issues but two days before I went back onto dairy to see if it returned, the reflux started to get bad again.
After being back onto dairy 3 weeks im now back to her being impossible to feed. Im thinking possibly dairy intollerent but not sure as it was going bad before my return to dairy. Could be the reflux

I can't take anymore of the BF.
She finally took some Formula (powdered form as now worked out it's the carton form she hates)
and am going to go dairy free again tomorrow and slowly change that one bottle to Nutramigen bit by bit - she hates it.

Im hoping I can get her to 6 months then just feed her on dairy free formula from then on.

TBH, ive just been miserable struggling to feed both times but I also feel sad it will be over soon (weird)!

The only thing I can add tip wise, it doesn't 'always' follow that feeding constantly helps.

It made my DD very colicy, explosive acidic nappies and more refluxy due to tummy constantly being full and not having time to digest one feed from the next.

A paed at the hospital told me to structure her feeds and to make sure she digested at least 2 hours, ideally 3 from beginning of last feed.
It took a bit of doing, DH, mum, visitors walking floor with hairdryer running to keep her calm but once she went 3 hourly the colic went as did the nappies and she improved quite a bit.
See, not only are refluxy babies different from others, they are also different from each other just to add more confusion!

Sleeping on tummy
white noise
A wedge on her changing mat and floor gym
Is my only other saviours.

What is the signs of intollerence apart from reflux symptoms?

Is it anything to do with painful wind in an older baby?

DDs intolerances make her very unsettled with very painful tummy/wind. She can't stay asleep for long, her reflux is aggravated and sometimes she gets a skin rash on her face and chest. Mucusy nappies (swimming in it). If she has had a reaction to something and has been really unhappy/ screeching all the time/ sore tummy she often gets black bits in her nappies.

Don't beat yourself up it isn't your fault, use a dummy if you need to.

Use a sling, and whatever sleeping method works. I still co-sleep still with 8 mo for naps at weekend.

Keep going back to doctor. After 5 months we finally got referred to paed.

Ah, the dummy. Worked a treat for DD1. Sadly DD2 treated it with disdain.

Yes, do not be fobbed off with 'colic' and 'all babies cry'.

Yes I feel the pain too, but only have one DS so slightly worried my next might go the same way.

Only words of wisdom I have to add is that my bouncy chair was a life saver, the lie flat position didn't get any use but putting DS in there immediately after feeds in an upright position kept the reflux to a minimum.

I wish I had heard the words "normal rules don't apply" in the early months as I was trying to fit in with a very competitive NCT group and was made to feel like I wasn't doing very well

Sorry to bump an old thread but I just found this by googling ("fucking nightmare reflux can't sleep", I think it was ) and it has made me feel a little bit more sane!

Just thought I would log in and share really. 6-month-old DS, doesn't nap, doesn't sleep unless held, is a lovely happy baby and would be a total delight if only he would BLOODY SLEEP! I feel like shit half the time as I have no patience for him or my DD - oh and the energy to exchange a word with DH occasionally would be nice too

Excuse the moan, and hello everyone. I know there's nothing much to be done about reflux except make them as comfortable as possible and wait for them to grown out of it. But it is nice to know one's not alone with the madness.