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Anyone else have baby with severe reflux/colic/cows milk protein allergy?!?

(39 Posts)
Gemmarey1985 Wed 04-Oct-17 17:44:46

Hello mums,

I am typing this whilst crying.. I feel so fed up, exhausted and just down right annoyed at the situation. My poor baby is suffering daily and I feel that we are not getting anywhere.

Henry Reynolds History

Born: 15th August 2017
Weight: 4lb 15oz
Gestation: 36 + 5
Delivery: Planned C section after poor growth within the womb

Henry was born healthy however; feeding has always been an issue since birth. In the hospital, we had difficulty in getting him to feed.

Once home, the feeding became worse in the terms of the below symptoms:

•Being sick after feeds
•Wriggling during feeds
•Pulling away
•Arching back
•Red faced
•Screaming during feeds- wanting more then repeating process
•Screaming when placed on his back
•Liquid coming out of his mouth up to two hours post feed
•Feeding for comfort
•Swollen abdomen
•Extreme discomfort

31st August- GPs whom diagnosed possible reflux and gave Gaviscon

1st September- Henry had a very bad reaction to the Gaviscon and things were so bad we went to the hospital. The hospital diagnosed him with reflux and or silent reflux. Given Ranitidine and told to give him 0.2 dose wise.

We also switched his milk from Aptamil to SMA as a nurse told us that Aptamil could be too rich for him.

Things seemed to slightly improve but we found it difficult to keep up with the dose for the ranitidine. The lower dose seemed to not even touch the symptoms. We upped the dose to 0.5 and things dramatically improved in terms of the reflux. However, the below side effects started to occur:

•Difficulty sleeping

7th September- We were told that Henry could have lactose intolerance and were recommended Hipp Organic formula and Colief. Things improved again with reflux but the side effects of the Ranitidine were getting to the severe point. Henry would not sleep at all.

14th September- Went back to the Drs to discuss the above. Was described Omeprazole. However, once home we researched the drug and decided that we were not sure if we wanted him on such a serious drug if he did not need it. We were not sure if the reflux was the problem or if it were the milk.

15th September- After stopping the Ranitidine, things deteriorated in terms of the reflux. He started showing the same symptoms. We decided to put him back on the Ranitidine but again tried 0.3 and things were still bad until we hit the 0.5 mark.

Over the next week things began to deteriorate with Henry. He started taking on more milk and no longer feeding every 2 hours- now feeding every 3 hours. However, his temperament changed. He seemed to cry all day and would not settle. He displayed the following symptoms:

•Crying constantly
•Only being held would sooth him
•Swollen abdomen
•Waking up to pass wind and screaming in pain
•Pulling legs up
•Trapped wind
•Screaming when pooping
•Classic colic symptoms
•Lime green poop

25th September- Went to the hospital after a particularly bad night. They suggested that along with the reflux, Henry could have a cow’s milk protein allergy. Went to the GP and was prescribed Nutrimigen. However, Henry went from taking between 100-120ml every two hours to 30-50ml.

26th September- Drs prescribed Althera formula to try and Henry seems to be taking this milk better up to 90-100ml average.

27th September- Since starting the new Hydro formula- Henry is showing more reflux symptoms like being sick, wriggling during feeds, pulling away, arching back, red faced, screaming during feeds, swollen abdomen and still seems very unsettled.

We are currently giving Henry 0.5 Ranitidine but still the symptoms are persisting.

The formula is very thin and have been told to use Carobel (can’t use Gaviscon due to what happened last time). However, the only bottles that work for Henry are the Dr Brown anti colic bottles and the 1 teat clogs with Carobel and he can not take the 2 or 3 teats as he is sick on them. The only larger teat he gets on with is the Vari Flow Tommee Tippee but those bottles give him VERY bad colic type symptoms.

Henry seems to have problems being placed on his back, screams whilst passing wind and pooping as well as a swollen tummy. He settles in the late evening but other than that, never seems to settle.

He still is displaying bad colic type symptoms but also the reflux seems to be worse. Also, the side effects of the Ranitidine are also there.

We went to see a private paediatrician last Friday as we were not getting anywhere on the NHS and he told us to start the Omemprazole and put him on Puramino (previously Nutrigram AA) and said Henry has reflux as well as a cows milk protein allergy that is serious.

Well this week the reflux has improved dramatically but his tummy is still swollen, he is still screaming most of the day, he still screams when pooping and when passing wind.

Anyone else is the same boat?

I am just so fed up..

Sorry for the long essay but I needed to get it all out.......

ADuckNamedSplash Thu 05-Oct-17 07:08:44

Wow, you and poor Henry have really been through it!

It sounds like the reflux is now under control and it's constipation that's the remaining problem...? Some things that have helped that with DD are massaging her tummy (rubbing in circles), bicyling her legs / bringing her knees up to her tummy, and putting her in her swing / vibrating chair (not sure whether it's the vibration or the swing motion that makes her poo, but something about it certainly does!) The health visitor also advised us to give her 100ml of cool boiled water once per day, by spoon or syringe into the side of her mouth, rather than by bottle - DD refused to take it, but that might just be her!

It sounds like you're doing really well in getting Henry the help he needs. Stay strong - this will pass flowers

daisygirlmac Thu 05-Oct-17 07:18:38

Oh bless you. I had similar but not as bad with DS with a lactose intolerance and even when we got him onto the right milk it still probably took 2-3 weeks before his tummy settled down. He also had the bright green poo and the difficulties passing wind, so many of the symptoms you describe are ones that used to have me in tears because there never used to be anything I could do to comfort him.

A few things to try:

Assuming he is gaining weight ok you can increase the water in 1 of his feeds per day. So if he has a 4oz feed make it up with 4 scoops of formula and 5oz water. This will help loosen his poo a bit and help him get it out

Ask your GP for movicol. This was a game changer for us but it was an absolute battle to get it. Once DS had cleared out the constipation we had (still have at 8 months) him on a maintenance dose.

With the reflux, I'm sure you're doing absolutely everything but keeping him upright for 20 mins after a feed, slightly raising the head end of his crib etc all help.

Lastly a swing and a sling! Sling is brilliant because he is upright and close to you and movement is great for upset babies with sore tummies. My boy used to like having his tummy really firmly pressed into me (into my boobs weirdly) but it seemed to help. A swing because when you are exhausted and can't walk up and down anymore the motion can help to soothe them.

Get as much help from family/friends/anybody that you can. There's no shame in this, ask for help. Make sure you have time for yourself each day. Remember this will pass

Much love, it's very very hard flowers

SilverAndCold Thu 05-Oct-17 07:22:13

My little boy has awful silent reflux but luckily gets on well with gaviscon. We actually found the Dr Brown bottles terrible- we now use Mam Anti Colic and they are much better. Might be worth a swap to see if they help- they're often on offer in Asda/Tesco by by the way.

SilverAndCold Thu 05-Oct-17 07:24:18

Also second what Daisy says re swing/bouncer. Is perfectly fine for him to nap in it in daytime. Also we don't use the carrycot on the pram when out as is too long to lie flat- we use the pram seat on the least steep upright or the car seat for quick trips- makes a big difference for us.

Gemmarey1985 Thu 05-Oct-17 11:47:07

Wow thanks ladies. The consultant wants to see Henry tomorrow so I am hoping to get answers... it's costing £220 per session because literally my GP is useless and will not refer me to a specialist! It's worth it tho! It's nice to know there are others out there that have been thru this!

ForgivenessIsDivine Thu 05-Oct-17 13:49:35

Sympathy from me. I wish I could come and hold your baby for you and tell you that you will find the answers and it will get better.

overmydeadbody Thu 05-Oct-17 13:59:17

My youngest has severe CMPA and it took six weeks of being dairy free before his symptoms cleared.

He was also on omeprazole for his first year of life and slowly came off it.

We have to be really careful with his diet, he cannot tolerate any milk, we attempted the milk ladder at 12 months but half a malted milk made him scream in agony for 48 hrs.

Persevere with the omeprazole and dairy free diet, and use a sling and swing, it will get better.

MrsPandaBear Thu 05-Oct-17 14:03:49

Dd is allergic to cows milk, her main symptoms are reflux, lots of discomfort and wind and diarrhoea. As people have suggested, slings are amazing for babies with reflux. We also got a wedge for her cot, which helped a bit at night. It usually takes a few weeks for the gut to heal after they stop having cows milk. The hypoallergenic formulas taste horrible (have you tried them yet) which may be why he stopped drinking so much. With the carobel, for breastfed babies you can make up a really concentrated 5 ml dose which you give by syringe before a feed (Google to find NHS hospital instructions on how to do this). I don't know if you could do the same with formula? There are some really good mum's Facebook support groups for CMPA if you are on Facebook, I got a lot of useful advice from them.

juniorcakeoff Thu 05-Oct-17 14:16:28

All of my children have had similar with varying degrees and varying issues with reflux caused by prematurity, CMP allergy and so on. Ranitidine worked for one but not the others and you had to weigh them every week and get the dose increased accordingly, they start them on the lowest possible dose so you may not have found the right dose yet. Omeprazole plus going dairy free caused some improvement in one.

It is a bloody nightmare trying out loads of different things so the most important advice I can give you is this - 1. Get a comfortable sling and keep them in it as much as you can 2. Check your car seat - maxi cosi type ones scrunch their stomach up 3. Accept that your baby is much harder work and unhappier than other babies at this point in time, it is not something you have done or can have any control over, it is not a predictor of their future happiness or personality, and you will find the older baby/toddler years a walk in the fucking park.

daisygirlmac Fri 06-Oct-17 17:30:18

How did you get on OP?

Gemmarey1985 Fri 06-Oct-17 17:49:42

I didn't end up being able to go today so have to go next Wednesday instead. Henry seems to be a little more settled today...I am just praying for a better weekend... I just want to enjoy my son

MiaowTheCat Fri 06-Oct-17 18:57:02

Message withdrawn at poster's request.

babybarrister Fri 06-Oct-17 18:58:30

Message withdrawn at poster's request.

user1483644229 Fri 06-Oct-17 19:04:47

Neonate sorted this out for us. We went from not much sleep at all for first 3 months so a 5 hour stint a week after being put on this.

Kim82 Fri 06-Oct-17 19:07:51

Dd3 was exactly the same as this. She ended up on Nutramigen Puramino and 20mg of omeprazole daily. Absolutely nothing else touched her symptoms and she screamed all day and night, it was bloody horrendous so you have my sympathy. I spent pretty much every day in tears and thrust her at dh the second he came in from work, it was awful.

Once she was on the right formula/meds she was like a different child and finally started to put weight on- it took a good few months to find out what worked for her though. We managed to wean her off the omeprazole just after she turned 2 (previous attempts didn’t work) and she still has the formula now at age 3. She can’t tolerate any dairy at all yet unfortunately but hopefully she’ll grow out of it eventually.

WaxyBean Fri 06-Oct-17 19:16:27

Just handholding because we've been through this too, and had many years of being milk (and other allergen) free. It is very hard to see your DS in pain and not know how to fix it.

On the upside I now have an 8 year who is super healthy and very excited to be going to Pizza Express for the first time at the weekend as he can now eat cooked cheese! It does get better.

Are you in London? Can thoroughly recommend the paediatric allergy clinic at St George's once your DS is weaning if your GP will refer you.

mrmakerwastespaper Fri 06-Oct-17 19:21:41

Sounds like you've seen an improvement with the hydrolysed formula but you'd benefit from trying an amino acid one where there's no milk protein in it at all. Once my two were on this we could get the reflux under control and I could actually enjoy my children.
Perhaps ask about this option when you see the consultant....
Oh an your GP is failing you with the care - under the NICE guidelines you should be referred to a specialist and last month new guidelines were published for GPs about diagnosing delayed milk allergies. Might be worth reminding them and the practice manager.

Really do hope you get it sorted soon. Our diagnosis was hellish for our oldest son. But - an although still dairy free and multiple allergy- he's thriving.

RandomMess Fri 06-Oct-17 19:42:30

flowersmine just had undiagnosed silent reflux, she's 14 - still not forgotten how awful those days were. The screaming, lack of day to day joy...

It does pass, it does get better but it is very very difficult at the time. I hope things improve soon and having a break from it if you can is a life saver (I went back to work I was that desperate!)

RandomMess Fri 06-Oct-17 19:46:06

There was a desperate Mum on here recently who had tried everything and said the babocush was a miracle worker to soothe her colicky screamer - worth trying?

Gemmarey1985 Fri 06-Oct-17 19:52:26

I've got absolutely everything and bought the babocush last week and he went in it once fine but now screams each time I try and put him in it

Gemmarey1985 Fri 06-Oct-17 19:56:10

I'm so overwhelmed over how much support there is on here. I can't tell you ladies just how amazing this all is to hear. It is so lovely just to know that there's other people out there that have or are going thru this. I feel so much better and it's weird that strangers have made me feel that way smile

RandomMess Fri 06-Oct-17 19:57:30

Wonder if the pressure on his tummy is the issue with it. How is he in a sling? Just thinking at least then you're not stuck holding him sad

Gemmarey1985 Fri 06-Oct-17 20:01:53

He will only tolerate a baby Bjorn but I can only get him to stay in it for 30 min max! He screams all the time and me holding him tight to my chest only works.... exhausted is an understatementsmile

daisygirlmac Fri 06-Oct-17 20:02:10

We're all rooting for you! When you've been there I think you never ever forget. I used to feel like absolute shit trying to placate my screamer at baby group while other mums drifted in with angelic babas saying they'd been a bit grumpy that morning. It does get better. In the meantime wine and mumsnet and if you can have anhour to yourself get a massage and have a kip grin

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