~*Mamas of Reflux Babies*~

[ladybrock]

How did the paed appt go ladybrock?

I'm finding things so hard....I keep thinking maybe I'm making up the reflux issues with LO as GP suggested colic and healthy baby. But she is so unsettled after feeds and last night it took an hour and half to settle her then she was up an hour later for next feed. She's still only taking 3-4oz's when normally she has 6ozs. My HV is coming tomorrow so will discuss it with her again and will ring to chase up paed referral. I feel like such a rubbish mum at times as feel I can't work out or know what to do for her x

We all have thise feelings but you are not and you are doing the best you can xx

Well were now on neocate formula for mspi (milk soy protein intolerance)

Hopefuly this will work, picking up carobel later to thicken it as its sooo thin!

Omneprazol didnt realy do anyhingbthat i can see yet despite being on it for 2 weeks but we was on a milk with soy in so not surprising really

We now have all the meds and milks we can have so just have to persevere and time will tell x

 

[vegazbaby]

are they doing any tests on him, theres a really good facebook page living with reflux that im on , and theres a lot of insight on there. i cant beleive that after all those meds and milks hes still not better, must be sooo heartbreaking. Thoms been on neocate and omeprazole for two weeks now and we have paddies when he's hungry but he's generally better on the whole. sleeps in crib etc. and mild screams in car seat.
are they going to try ph test or anything like that after the new milk trial,?

 

[ladybrock]

are they doing any tests on him, theres a really good facebook page living with reflux that im on , and theres a lot of insight on there. i cant beleive that after all those meds and milks hes still not better, must be sooo heartbreaking. Thoms been on neocate and omeprazole for two weeks now and we have paddies when he's hungry but he's generally better on the whole. sleeps in crib etc. and mild screams in car seat.
are they going to try ph test or anything like that after the new milk trial,?

Ah really so same as my lo then.
2 weeks... So when did you start to see improvement then?
Hes only started the neocate yesterday.
How much omneprazol he on?

Did they not give you domperidone too?

Not mentioned tests but if he doesnt get better am to call the peadiatrician

 

[ladybrock]

Forgot to say hes only been on a decent dose of omneprazol for a week now
And we also started domperidone a week ago so really its only been a week of a decent amount of meds

 

[vegazbaby]

hes on 10mg of omeprazole, he didnt get on with domperidone, buckled over in pain so we stopped after day 3,, we had hell for 3 days as they stopped the ranitadine when we had the omeprazole but then around day 5 of the milk and omeprazole and i hate to say this but i now doubt myself,,, did he really have reflux in the first place. and i know that sounds really silly but i have to remember what he used to do when he had it, legs were always up curled over, always had stuff in his mouth, pooing was traumatic for him, he used to kick and scream and pull my hair mid feed and wind was a nightmare to get out of him


now i get a screamy thrusty baby but its pretty much when hes hungry, his wind just pops out of him, just have to sit him up and this belter comes out, he does get a bit dribble sicky but nothing too bad, but this does seem to be working together so now i guess we will drop either the meds or the milk to see which one worked
the paed said he expected improvement one to two weeks in, its not over night,
i really hope it continues to work for tom, and hope that it works for you too, neocate stinks btw lol

 

[ladybrock]

Weve dropped the domperidone too
On same as you , did you find neocate made your lo windy at first?

He done a huge poo uo to his elbows this morn lol
It stunk!!!

 

[vegazbaby]

He was trumping really bad at first but now never notice it much poos every four days instead of three and its green lol.

 

[klcuk3]

Well we ended up taking our LO to the out of hours GP today having spent a very restless night with her screaming in agony and was inconsolable
Turned out to be a complete waste of time as we were told she has colic, we're overfeeding her and should limit milk intake and give water instead. We were told to not rush winding her which having spent many 1-2 hour periods trying to settle her I don't think that's rushing her. He told us to try changing milk brand and that meds such as ranitidine and omeprazole are last resorts and not really suitable for a baby her age (11wks).

We're trying Infasoy milk to see if that makes a difference and will use Gaviscon. Our paediatric appt won't be until mid December at the earliest but could be January

 

[ladybrock]

He was trumping really bad at first but now never notice it much poos every four days instead of three and its green lol.

I find it comes out his mouth as well.
Just generay gassy, i read that they start of windy until they get used to it so hopefuly itll improve!
But yea lots of trumps. He usualy goes once a day.
Twice today.

 

[ladybrock]

Well we ended up taking our LO to the out of hours GP today having spent a very restless night with her screaming in agony and was inconsolable
Turned out to be a complete waste of time as we were told she has colic, we're overfeeding her and should limit milk intake and give water instead. We were told to not rush winding her which having spent many 1-2 hour periods trying to settle her I don't think that's rushing her. He told us to try changing milk brand and that meds such as ranitidine and omeprazole are last resorts and not really suitable for a baby her age (11wks).

We're trying Infasoy milk to see if that makes a difference and will use Gaviscon. Our paediatric appt won't be until mid December at the earliest but could be January

Sorry your having so much trouble
Can uou try another doctor? Just say gaviscon not working and health visitor has suggested trying ranatidine. Say you know other mums that use it for their lo's
Just lie if you have to to get what you need xx

 

[klcuk3]

Well we ended up taking our LO to the out of hours GP today having spent a very restless night with her screaming in agony and was inconsolable
Turned out to be a complete waste of time as we were told she has colic, we're overfeeding her and should limit milk intake and give water instead. We were told to not rush winding her which having spent many 1-2 hour periods trying to settle her I don't think that's rushing her. He told us to try changing milk brand and that meds such as ranitidine and omeprazole are last resorts and not really suitable for a baby her age (11wks).

We're trying Infasoy milk to see if that makes a difference and will use Gaviscon. Our paediatric appt won't be until mid December at the earliest but could be January

Sorry your having so much trouble
Can uou try another doctor? Just say gaviscon not working and health visitor has suggested trying ranatidine. Say you know other mums that use it for their lo's
Just lie if you have to to get what you need xx

This was a different doctor and we tried to explain that HV had suggested ranitidine but he was having none of it. It's so frustrating. Think I'm going to call my HV on Monday and ask her if she can speak to one of the doctors about it. I will not give up, it's just draining though having to fight for everything x

 

[ladybrock]

What milk are you on? I have some tind of nutramagin lipil that we dont need here as weve moved to neocate maybe you could try your lo on them? X

 

[ladybrock]

Whats infasoy?

 

[klcuk3]

Infasoy is a soya based formula which is lactose and cows milk protein free. The doctor we saw yesterday suggested it. I stupidly went and bought it from Tesco's yesterday. She does seem more settled on it but having done some reading about it, it's not meant to be used before 6 months old. My OH says we should continue to try it for a week to see if it helps then go to GP and request special milk. Only problem will be that we won't know if it's lactose or cmpi that makes her uncomfortable if this milk works.

Is the nutragemin lipil for cmpi? How is it different to the neocate?

 

[ladybrock]

Neutramagin has soy in it but is for cmpi
Sounds just like infasoy except its for children under 6 months

We think he may be reacting to the soy as well though.

Its what they wil prescribe first at the docs

 

[Nela]

What I have heard is that lactose intolerance is much less common at this age compared to CMPI or CMPA. CMPI usually means the kid's digestive system is a little more fragile, making them need formulas that are easy to digest so soy might not work on those kids. The protein in both cow milk and soy is similar so if they cannot digest one (that is what they mean by 'intolerance') it's entirely possible they won't digest the other. Highly hydrolysed formula might work best since the protein is extensively broken down, making it much easier to digest. I would avoid thickening those to see if kiddo digests it a whole lot better. That is the case with my son. He couldn't digest the regular milk and is now on a highly broken down milk so he digests it a whole lot better. Because he does, he is no longer nearly as gassy nor constipated anymore - resulting in a major change in his reflux. This is always worth a try as it helps you identify the problem a whole lot more easily if you can see that there is a significant change when you use something a lot more broken down. The downside is, it's expensive stuff. The upside, if it works, it can make a world of difference to both of you.

 

[klcuk3]

What milk do you use Nela?

 

[Nela]

Right now I am trying him on this one only: https://www.aptaclub.co.uk/products/special-milks-0-12-months/article/aptamil-pepti to see if there is any significant difference of it on its own. So far, instead of one poopy diaper a day, I have multiples. I'm trying to see if he will spit up significantly less with it. He has become a 'happy spitter' but was still spitting up loads so now I am trying to see if I can tweak that a little more. Otherwise, I am combining that one with Omneo Comfort 1 and doing a half/half combo. He spits up loads on that combo but is not very gassy, has one poopy diaper a day, and just does well. It's really mainly the spitting up that I am trying to reduce at the moment.

 

[ladybrock]

Well neocate he hates and is making him gassy im puting him back on nutramagin lipil and waiting for pead to call me back.

My question is why would he have been ok for days/weeks on lipil of it was t any good for him? He even slept through the night on it so surely its ok?
And its just a case of upping his omneprazol dose...

Thats my theory any way what do you think? Going to ask the pead tomorrow

 

[vegazbaby]

Is he on 10mg mines been fine reduced dose as directed now have reflux baby