GOR and Sikent Reflux HELP

[LB80]

Hi Im new to this but desperately need some advice and help. My beautiful boy has GOS and Silent Reflux. Its absolutely heartbreaking to watch him everyday and night vomit and scream in pain. He is on omeprazole and domperidone (previously tried gaviscon and ranitidine) but meds making no difference. Back at the hospital today but dreading it as I know they will just send us home.
Has anyone any ideas to help? Keeping him upright makes no difference, not moving him after a feed doesnt help nor does elevating his bed. We have tried everything. Very stressful and upsetting.
He is nearly 8 weeks old ??

Hi, I wish I could remember everything I did with ds when he was younger. He had severe reflux. To the point where still at 18months he was being sick numerous times a day and was going back down to birth weight. Hes under dr thomson at Sheffield children's hospital. I would either trt and get nhs referral for him or see him private. Google him. He saved my ds life. Cases like ds are extremely rare. He has other things going on too so they all link together. My nephew on the other hand had reflux up untila year old and my niece had it for until ahe could sit up. It's common for them to have reflux which I know doesnt help.

my baby is nearly 4 and is tube fed as his situation as a whole deteriorated so much he still to this day refluxs But like I said he has a whole heap of problems so dont let that scare you. It will pass. Its getting the right treatment with the right feed balance sorted out.
Once the meds are in his system it will help the meds dont physically stop him from being sick they help with pain and possible reasons to why he may be sick

. Have they checked for that narrowing? Can't remember what it is called

Constipation plus reflux often means cmpi or something along tje lines of that. I would ask hv or gp if it was worth giving specialised formula instead of breastmilk.

Hi ilovemonstersinc.
We were emergency referred in first instance to rule out pyloric stenosis but docs at hosp didnt even scan him or observe a feed just looked at him !
Phoned HV so waiting on her phoning me back. He slept for 30min and woke screaming. Trying to feed again at mo.
I feel so helpless

He definitely needs a scan. Ds had an ultrasound to rule it out.
Google dr Thomson gastric paed his website should come up lots of advice on there.

If hes still no better then take him a+e and once a paed has seen him ask for a gastric paed to see him and explain that a scan wasnt done x

We are under Dr. Thomson too.

He diagnosed the dairy/soy allergies after the reflux/apnea episode and has been very thorough, always taking things seriously.

Once they are over six weeks, it is normal for BFed babies to go days without pooing, so it won't necessarily mean he is constipated.

Hope the appointment goes well tomorrow.

Well we are finally at the hospital! Fingers crossed appointment goes well

Outcome of hospital app- increased domperidone to 2mg four times a day. Stop omeprazole if I want to! No suggestion of CMPA so I brought it up and her response was to try DF diet for another week, if no difference the stop it. Follow up in 3 weeks.
Not sure how I feel

Not really good advice imo.

They should have helped you more.

Did you manage to look at that website? I see him next week as ds is bad again. Stop the omperzole if you want to I wouldn't. It helps with the acid to do with reflux.
Domperidone should really be looked at as they dont like to give it a lot anymore due to side effects.

Could you afford an appointment with dr thomson?

sorry to say I agree with monsters: NICE guidance is that the efficacy of domperidone is not proven in GOR. PPIs are the agent of choice. You shouldn't have to go private. Grrr. You can probably dig out an email address for the consultant you saw and query that way.

Hi I havent increased the domperidone as it seems quite a jump in dose to me. Still giving the omeprazole as her advice of "stop if you want" just doesnt sit well with me.
Yes I looked up that website and some other pieces from the doc you suggested. Might try to contact him.
3 weeks is just a long time to leave a baby vomiting and screaming in pain!
Oh no monsters is your little one ok? X

He has digested blood in his poo, at nearly 4 years old he still refluxs a lot. He still gets pain a lot but could be linked to his autism? He is fed via tube in his stomach and sometimes seems like he isnt absorbing his food.

His private secretarys email address is on the site. Shes absolutely lovely and passes the info on to dr thomson and he then cam advise what to do (most of the time itshe needs to see me asap get a referral) if you can't afford it then can you take him to Sheffield children's a+e and ask for a gastric consultant from dr thomsons team to see him?

How has he been today? X

Hi,

It must be such a tough time for you. Hang in there, it will get better. I promise you. I have a diary of DD at that age and its painful to even read it. Lots of hugs to you.

My DD was also given medication for silent reflux, though I had to beg for it. We were given lansoparazole and it's quite good because you only give it once a day, and the dose doesn't need adjusting based on weight. Two weeks on it and my 2-3 month old was a different baby! We weaned her off happily at 6 months.

We did try going dairy and soya free before the medication for 2 weeks but at the time it didn't make a difference. However, I had ALOT of fruit juice (apple based) to make up for not having milk, and didn't realise then that apple is very acidic, even more than oranges! So I didn't see a difference to her crying, though it decreased the vomiting. BUT when we weaned her at 6 months, she immediately reacted to cows milk, and now at 12 months she is allergic to cows milk, soya, egg and wheat!

Egg is the most common allergen in babies after cows milk. If I were you I would avoid the following foods for 2-3 weeks and see how she reacts:

• cows milk and dairy
• egg
• soya
• anything acidic, like tomatoes, apples, oranges, any berries, vinegar, etc

Even now my DD gets refluxy if she has anything apple based, but is fine with tomato.

Also ask your consultant GP for lansoparazole, it might help.

There is a book called 'the complete to guide food allergy and intolerances' and the section in there on colic is fantastic! The prof suggests that in some cases it might be best to put baby on a hypoallergenic formula like nutramigen just for 2 weeks (and you can continue pumping to keep your supply)to see if the baby's discomfort alleviates, and then you will know for sure that allergens are causing a problem, then you can decide whether to continue breastfeeding with all the dietary exclusions or to formula feed.

Also, do you or your partner have any form of allergies like hayfever? There's an 80% chance baby will have allergy if both parents have an allergy (I wish I had known that as both of us have hayfever).

With the consultants, tell them what you want. They will probably give it. Even with the consultant we saw, he was lovely, but he only gave me the medication because I requested and gave it as a trial, not really believing it. I am thinking of emailing him to update him on how it went so that he knows that there is such a thing as silent reflux!

Oh OP, such a tough time. My DS was similar when tiny - screamy, miserable, awful feeder, constantly cried and didn't sleep. Eliminating dairy & soya from my diet and giving quite a hefty ranitidine dose worked in the end and we saw gradual improvement over a few weeks.

He's now a bouncing 7 month old, full of smiles and giggles, off all medication. He does have confirmed food allergies (including dairy) which were likely the cause of his awful silent reflux.

I'm still dairy free and seem to live on biscuits (bourbons, hobnobs & Oreos are my favourites!).

No real advice for you but just to say hang on in there - it will get better.

Morning. Oh monsters what a shame. Let us know how you get on. Im going to email Dr Thomsons secretary later for advice. Thank you so much.
Blueseashore & Shinesmile thank you too. He def vomited less yesterday but didnt feed much. Kept going on and off, bobbing about! Had several foul mucousy poos! However irritable a lot really screaming. Ended up giving calpol at bed and he slept.
I will exclude those foods from my diet. Thank you for suggesting them. I may have to stock up on oreos!!
My husband is taking me out on saturday night but im not sure I can go and leave bub like this.

I would go to give yourself a little break. You will feel a little better to have got some time away. I wish I did.
The mucousy poos as far as I know are about to do with reactions in the gut so does sound like cmpi.
I really do feel for you. This bit getting them to the right dr is the hardest. Once your with him he wont take no bullshit. He doesnt care about cost to the nhs like other drs and will do something to see if it helps.

He will probably want to do the barium swallow, ph study and maybe a scope. Ds is due another scope and ph study. Hes currently on highest dose omperzole.
Ps did you know you can get the liquid. Drs dont like giving it due to cost but if a child wont take the mups they have to give liquid. Our gp hates us for this lol

Hi we have had a bit of a better day. Hubby been giving bub bottles of EBM so I can get a break. At first bub wouldnt take it but has been quite good as the day has went on.
Still having screaming episodes and vomiting but not as bad today.
The health visitor is getting a doetician to phone me next week. She was a bit shocked about the doctor at the hospital.
I was very teary yesterday. Starting to worry that it is PND. Did anyone else feel like this or is it just stress and worry?

Am sorry to say I developed PND after I had DS with allergy and severe reflux. However I have a looooong history of major depression so it was always more lkkely than not. Antidepressants can really help - don't be scared of them if it comes to that. Lack of sleep has to be a major factor, and I think feeding problems are really tough on all concerned.

Glad you had a better day. If pumping is easier for you, go for it. Never, ever feel bad about the way you feed your baby. Hell, I ended up giving DS altered milk proteins and fake fats flavoured with nesquik and he turned out ok not recommended

Dietitian could help recommend what tk cut out

I developed pnd too. Its such a stressful time
I only seeked help when ds was around 6months old. Had a bad birth with him too and he had meningitis with septicaemia and plus the reflux so was bound to happen
like above poster said dont be ashamed to ask for help

glad hes taking the bottles ok and that youve pumped enough for bottles! You can get a bit of a break now. Get dh to feed him and you have a nice bath and chill

We went out last night and had a lovely little break. Bub was unsettled but my family coped well with him. He hasnt been too bad today.
Think i will speak to HV about how Im feeling. Not mentioned it to hubby :0(

What dose of ranitidine was he on and how long did you trial it? Sorry haven't read the whole thread if you've already mentioned this... My DS has silent reflux, although it's well controlled with ranitidine but it did take a good couple of weeks to know whether it helped or not.

Hugest sympathies as I know how awful it can be. I went to A&E out of sheer desperation at 3am one night when he was about six weeks old, because he just wouldn't stop screaming poor chap.

Hi beccajoh
We stopped the ranitidine as it was not working. On domperidone and omeprazole now.
I have been close to taking him to A&E as screaming gets so bad its just awful to see him like that.

We did try ran too but made ds scream more

I would take him a+e when hes having a full blown cry so they can see how painful it is and help him.

Glad you got a break!

Speak to dh about how your feeling. You might feel better once youve spoke to someone in real life x

Thanks Monsters I will do. Actually had a day of no crying from me. Bub has had a settled afternoon so that has helped.