Cows Milk Allergy/Silent Reflux/Colic????

[harryolivia]

Hi,

Sorry for the long post but me and my DH are getting confused with what is up with our LO.

A bit of history, she has cried and screamed all day, every day since she was 3 days old. I have taken her to 7 doctors who all said that it was either colic/constipation/overfeeding (LO always seemed constantly hungry). The HV advised to change to Cow and Gate comfort which we did, and there was 2 days improvement and then back to the crying/screaming/irritability. The HV then witnessed LO fast asleep and her suddenly waking up screaming. We were referred to a dietician who suspected lactose intolerance. So we started her on SMA LF. This made her ten times worse immediately and after a few days, blood/mucous appeared in her stool. I took her the doctors that day and was told to drop her feeds by an ounce. I demanded to see a paeditrician, after 10 weeks of being fobbed off and LO getting worse by the day. We ended up in a and e 3 times, over the weekend as LO was in that much pain she couldn't finish her feeds. They said its either CMA or SR or both. The dietician confirmed it was cows milk allergy so we started nutramigen. Again, a few days improvement and then all the symptoms were back: mucousy, screaming, crying, bringing her legs up, arch her back and general irritability. LO was then put on nutramigen AA and 0.45 ranitidine x 3 for silent reflux (LO is never really sick but regurgitates). She has now been on this milk for 3 weeks, and we saw improvement within the first 5 days but symptoms are coming back, worse by the day. Yesterday we saw the consultant who has now prescribed 1.5ml ranitidine and 2.5ml domperidone. I understand that they are weight related for dosage so maybe thats why her symptoms have come back but LO has started screaming before she farts/burps and now we are not sure if its trapped wind more than the silent reflux? Colic/reflux symptoms are so similar.

Also, i now dont see what difference the nutrimegen aa has done as she still screams after 3 weeks on the milk? So i'm wonderign does she have CMA at all? LO is in so much pain when she has her screaming/crying fits which is always after her feeds. She sleeps 7.30pm until 6.30am and is fine, so its just from the feed first thing in the morning and all day. I have to hold her all day and can't get anything done.

I would be really interested to hear your thoughts and if anyone else has been through the same thing? I can't wait for all this to settle

 

[jessica716]

although i can't comment on SR or CMA, the crying/screaming after feeds sounds similar to my LO...

He will sleep a long stretch at night with no problem but from morning until bedtime he is in pain, i hold him so he sleeps as he won't settle any other way..
LO has 'severe colic' according to the doctors, he has 2 doses of infacol before EVERY feed...since doing this there has been a big improvement although he does still have a few bad days...

i hope it settles soon for you hun

 

[nicole_]

this sounds just like my LO except its only from his afternoon feed through to his last feed before bed thats hes screaming and unhappy
i literally am between my doctors and pharmacy most days
ive been given gaviscon at first, went back and they just said to keep at it, then they told me to take him to 2 doses of it, now hes been given omeprazole and hes had tests sent off for lactose intolerance as he has diorhea. HV suggested teething and the fact SMA changed their formula, all the doctors ive seen have come back with something else. all the sypmtons seem to overlap for each thing and it seems impossible trying to work out which it is?!
im lucky in the fact mines only for the last 7/8 hours of his day but no-one can figure out whats up and its so frustrating and upsetting whatching him like it and not having a clue what to do with him

 

[harryolivia]

Thanks for your replies.. its so difficult isn't it. Do your Lo's scream as if they are in pain as ours does. She goes bright red, cries, holds her breath, goes stiff and there are even tears... its so distressing for both of us! Sometimes though i can distract her from it, by walking to a different room and ssshhhing her or by sticking her dummy in gripe water which gives us 2 minutes before she starts again! We have just bought a baby bjorn which is helping settle her!

I'm just getting frustrated not really knowing what the cause is and everytime we try something there are a few days improvement then were back to square one. We've tried everything; infacol, dentinox, colief, gaviscon, raising the cot, keeping her upright for 30 mins after feeds, winding her every 2oz on a feed (although she has always screamed when we stop the feed for winding so we tend not to do that now). I've even thought about the cranial osteopath which is the one thing we havent done as yet.

The consultant is sure that she definitely has the CMA because of the blood/mucous in her stool. (that didn't appear until Week 10 and did stop after 2 days and it hasn't reappeared). She also said that it will take a while for the side effects of the allergy to subside and her intestine will be sore and irritated so we've got to wait for it to all heal.

As you said the symptoms for the possible problems are all too similar. Maybe our LO has an immature digestive system and has a mix of the problems: a bit of cows milk protein intolerance, silent reflux and colic! Its just really strange as some days are better than others and come her last feed, its like someone has just flicked a switch off and she's settled.. bizarre! She can also be smiling and babbling and then without warning she'll scream out in pain hysterically!

I'm resorting to the fact that were in this for the long haul and she'll probably (hopefully) grow out of it by the time we've found the right answers!

Hope your LO's settle soon, as i know how stressful and hard work it is! xx

 

[Sabine]

Silent reflux and cow's milk protein allergy over here. We tried gaviscon, ranitidine, nutramigen...

They don't like to prescribe it because it's too expensive, but we are now on Neocate and that has changed everything. (still on ranitidine too)

I found the same thing with Nutramigen - seemed to improve and then went downhill fast...it's not broken down enough...
The specialist said she 'failed' Nutramigen.

Neocate was the answer for us - she is by no means 'cured' but she is a different baby.

Hope that helps
xx

 

[snowflakes]

My little Lily has silent reflux and trapped wind, so i can totally feel your pain!! She is on ranitidine for the reflux and we switched bottles (which helped ALOT!), we now use Dr Browns and i absolutely love love them! This has helped alot, but we still has screaming fits at night mostly that i believe is because of bad gas pains.. I haven't found anything to help with the gas, so i'm right there with you, i pretty much feel like i'm going to just have to ride this out and hope and pray that she grows out of it, but you just feel so bad for them... I can't stand to see her in pain, it just kills me. Some nights i cry right with her!!!!! I think i would sell my soul for a good gas remedy right now... Oh and because of the gas she sleeps only for a short time and then its wakey wakey time... She is 8 weeks old and its been eight weeks since i've been able to get more than 3 hours of sleep. And 3 hours is on a good night! I hope you find some answer, if you do please share!

 

[bubsahoy]

Silent reflux and cow's milk protein allergy over here. We tried gaviscon, ranitidine, nutramigen...

They don't like to prescribe it because it's too expensive, but we are now on Neocate and that has changed everything. (still on ranitidine too)

I found the same thing with Nutramigen - seemed to improve and then went downhill fast...it's not broken down enough...
The specialist said she 'failed' Nutramigen.

Neocate was the answer for us - she is by no means 'cured' but she is a different baby.

Hope that helps
xx

Hi Sabine, I have been trying to pm you but seeing as i'm new i'm not allowed
I would love to find out how you found the neocate starting off and how long it took to kick in! I have read it can take 2-3 weeks to work?? We are on it about 11 days now and the silent reflux is very bad today and the poor thing is FULL of wind, did you find it got worse before it got better?? We also went the Nutramigen route along with liquid losec (but turned out contained lactose) and now back on Zantac again that doesn't seem to be doing a whole lot!
Sorry for butting in on the post but i'm desperate
Harryolivia your little one sounds alot like ours, come his last feed at night he is a happier little man but during the day he could roar, one minute we could be getting loads of smiles and the next he will throw the lip at us, he can be so fussy over his bottle and have wind all day! From what i have heard infacol, dentinox etc is not good for babies with reflux as it makes it worse and causes more pain when getting the wind up!
We have gone to an osteopath and this did nothing even after 7 or 8 visits and an empty wallet! If the reflux is caused by something like the milk allergy i think the only way of fixing the problem is to get the formula right which is why i have my fingers and toes crossed for the neocate

 

[GeorgeyGal]

I know how tough it is, my LO has CMPI and SR, we took him to A&E at 8 weeks old as the referral from docs would take 4weeks, way too long for LO to continue suffering!

In my experience I found I had to do all my own research and basically TELL the paed/doc what LO has and what meds I wanted. I didnt want to put LO on Infant Gavison as I knew constipation was popular with it but they wouldnt prescribe anything else until we tried it. Well tried it for a few days, rock hard painful poops so took LO off it, got some Lactolose and asked for Ranitidine. 0.4ml x3 per day, noticed an improvement as in less hiccups, gulping and slept a bit better even though I was still holding LO upright for most of the night. I had him sleeping on an incline at this point and held him upright 30mins after every feed. He was still squirming in pain at each bottle and then I heard from a mum whose baby had exactly the same symptoms and told me she put her bubs on Aptimal Pepti and he was like a different baby a week later, I asked my GP if I could try it, he humoured me and said I could, and the improvement was almost immediate. It takes 4weeks plus for a new formula to take effect, especially with acid reflux as takes time for the oesophagus to heal and its usually inflammed.

LO still was having bad colic symptoms especially in the evenings and was full of wind so I started massaging techniques for colic, and it improved things, I got the techniques from https://www.treatcolic.com/treat.htm

After 2 weeks we noticed that the Ranitidine was wearing off so took him back to up the dose and was put on 0.8ml x3 per week as its extremely weight sensitive, I believe for every 1kg it needs upping. Another 2 weeks later it was upped to 1ml x3 per day, the paed wouldnt up it again so gave up Domperidone, well this seemed to make things worse (was told later by a paed that its not v effective for SR as it works by keeping the contents in the stomach and what we needed was an acid inhibitor). So, LO was put on Omeprazole and the next day the reflux was under control, what a relief!!

So bringing us up to date, LO's reflux is nicely under control but he still strains alot and seems uncomfortable at some bottles, the meds he is on are probably giving him trapped wind, but he is so much better than he was.

I have a follow up paed appointment in a few weeks time as babies with reflux really do need monitoring, so hopefully we can discuss early weaning, and check his Omeprazole dosage is still good for his weight.

It really is a mindfield, and v trial and error. What I did/do is keep a diary, I write down each feed, each BM, each nap etc and symptoms to see any patterns and so I know what to discuss with paed.

Good luck, I swear it does get easier, especially after 3 months, the colic eases up! x

 

[zeezee]

You poor darling, I know exactly how you are feeling. What hyou describe your LO going through is what my DD went through. So I can tell you that zantac/ranatidine did sweet FA for my LO's reflux after a week or so - like others have said, it is so so weight sensitive. You also have to give it 30 mins before a feed, and often drs prescribe it as a once a day thing, and babies metabolize it so fast it really needs to be twice a day. I am lucky I have a wonderful ped - she is now on prevacid twice a day (7.5mg/ml). The prevacid kicked in on day 12 (if you can manage to get your dr to prescribe it, keep up the ranitadine for 2 weeks as well, and also ensure the dose is strong enough). Its been a saviour for us. We have the compounded prevacid, which is a suspension so it doesn't need to be given 30 mins before a feed (the solutabs do).

With the wind etc, my LO still hates pooping and has wind issues - we give her colic calm at every feed which has really really helped, and we use nuk bottles and teats because they shoot the milk to the roof of the mouth rather than the back of the throat and gives baby time to swallow and doesnt cause her to gag.

Finally, the daycare lady has been great and one thing that has REALLY helped is not actively burping her. When she needs burping we sit her up and gently rub her back and within a few minutes she burps herself - this has made a big difference.

 

[Zondon]

This sounds exactly like my little girl!! She's also hungry all the time, suddenly wakes up screaming in pain, started having bloody stools after being placed on LF milk...! What happened with your little one?! Did you find a formula/med mix that worked a bit better for him???

I hope this finds you well.

Zondon