7 week old FF baby dropping centiles - help please!

[Elednor]

First off let me say that I've spoken to a GP, HV and pharmacist about this and they all have differing advice. I'm sorry for the epically long post, but I want to get all the information out there so hopefully someone can help.

7 week old DD has been suffering with what I believed was colic from 4 weeks old. She began to drink less, eventually only having 1.5oz - 2.5oz per feed, screaming and fussing afterwards and not sleeping. She also had a couple of nappies where she was screaming whilst trying to poo, it was awful. We started using Dentinox colic drops alongside Dr Brown's bottles, and the difference was instantaneous! We got her weighed at 5 weeks and her weight had gone from the 50th centile to between the 25th and 50th, but as she'd had a bad week, we'd expected that! She'd started having 3-4oz per feed so I was confident things were picking up.

We took her back to be weighed yesterday and she's now dropped to between the 9th and 25th centile. HV was concerned and referred me onto the GP for a review. HV thinks it could be silent reflux, as DD sometimes has a bit of milk leak out of her mouth, she fusses after about 2oz of her feed and it can be a battle to get her to take anymore. Since 4 weeks she's gradually gone from having a couple of dirty nappies a day, to now having them once every 3 days. The poo is still green, but not pellet like but rather a large lump that's not dry but seems like it could almost be constipation IYKWIM?

The thing is DD sleeps like a dream at night, no problems laying flat swaddled in her cot. She wakes up, has her feed and goes back to sleep without any fussing or crying! In the day she's hard to settle to sleep - refuses to nap in her crib, pram, cot or bouncer but over the last few weeks she isn't exactly happy on our chests or in our arms either. It's really draining listening to her cry because she's so overtired, then she finally drops off and three minutes later she's awake again, drops off five minutes later then after ten minutes wakes up. She seems to sleep quite uneasily in the day.

I'm not sure it is reflux as DD is happy to sleep in her cot at night, and also has no problem laying on the changing mat etc to be changed. I wonder if she is a bit constipated, could that cause her to feed less and be able to get comfortable to sleep?

GP has given us Gaviscon on the basis that he thinks it might be reflux, and it doesn't hurt to try. When I pointed out that lots of people's babies had suffered constipation with Gavison, and I believe DD is already constipated, he agreed with me but said it wouldn't make her constipation any worse and that the reflux was important to sort out first. I asked about changing formulas but he didn't know about formula and was really aghast when I told him HV couldn't advise on formula and told me to ask the pharmacist.

Pharmacist says Gaviscon can't cause constipation. I asked if switching formulas could help and he said yes, and if he had to choose between using something like comfort milk or gaviscon, he'd go with the former first to see if it helped with the constipation or reflux.

HV has told me to give DD a feed every 3 hours now and keep a journal of her feeding schedule. I've always fed DD when she's asked for it, and as DD won't dreamfeed, I'm having to wake her up to feed her - which is fine if she's had a good stretch of sleep, but if she hasn't and has struggled to sleep, then she only has 1.5oz or 2oz, then fusses and screams because she's overtired. She takes ages to resettle, then we have to repeat it over again. Looking at the feeding schedule yesterday, I think she actually had a couple of oz's less than normal. Today has picked up a bit (so far) but as she's now feeding every 3 hours, she's taking less each feed so it evens itself out.

I would say that feeding on demand, or on a 3 hour schedule, she's only managing around 21oz a day whereas she needs to be having more like 24oz at least. I have to go back to have DD weighed next week, and they said they definitely want to see an improvement, but I don't know how?! At the moment I've decided to switch to comfort milk and see if it helps her constipation, which may help her drink more? She had one bottle of it last night - she only had 2oz, but this morning she had a more paste-like poo although it smelt absolutely foul

I'm so worried about this. HV and GP both said how concerned they were, and HV says DD's weight mustn't drop anymore and I somehow feel like it's my fault. I gave up breastfeeding DD at 14 days old as I had mastitus at 10 days which was agonising, then DD and I both got thrush as well as a bacterical infection all over my breasts which were big infected spots everywhere. Some of them still haven't gone, and I'm on my fourth week of antibiotics now plus medication for something else which GP said would be present in my milk for at least 2 weeks. Whilst she was BF we had none of these problems, so I can't help but feel that this IS my fault, if I had just carried on pumping and dumping for a few weeks and then tried to go back to breastfeeding, this wouldn't have happened

Blimey, sounds hellish. You are being let down by your hcp, it seems gp is.at the root of it.
But you.didnt actually see the paed? Just phone?
I.cant understand how your gp would send you away withbaby losing weight and no.action plan
You need to see another paed, gp, whatever, wherever.
You may have to keep pushing until somebody takes you seriously im afraid.

Also, did you ask gp about possible milk allergy? Its about 5% of babies.so.not so uncommon.

Agree with you tiktok re weight, and I would hope GP would act if she hasn't gained anything by Friday! It just feels so far away - and I'm scared to find out what her weight is as we've had some bad days - she's gone from having 21oz to averaging 17-18oz. I am convinced it has something to do with the milk because it all kicks off after she's had an oz or two of milk, so I definitely feel it could be caused by an intolerance to cows milk protein.

What upsets me is that the paediatricians have brushed it off, even though the weight loss is minimal, they have no idea what it's like for us at home and how miserable we all are. Last night was as bad night where I stupidly cut back the gaviscon as I thought I had finally cracked it, and she was unsettled all day and then screamed from 4-7 when she finally crashed ... her throat was hoarse from crying and nothing we did could console her. She seems fine today, but not happy as such, because her drinking has tailed off again.

I'm going to persevere with powder today and tonight and hopefully she'll get used to it. We deliberately picked cow and gate as it was only £8 a week as is Hipp - DP's redundancy was completely unexpected and he hadn't been with the company long so no payout to fall back on unfortunately. We're claiming the HS vouchers and just received them last week so they are really helpful, and we could buy cartons for the next few weeks but it would become a real struggle after that to be able to afford them.

I really feel for you. If you think it mig be the milk itself there is little you can do without a prescription. I was brushed off by over 10 health professionals and only recently have I seen a dietitian who confirmed my suspicion and said it was likely my dd has cmpa. As she is bf I discovered this by cutting dairy out of my diet, the change was very marked.

Your current medical team sound clueless, really you may find seeing someone else even if it is in a and e will lead to recognition of what is a real issue, if the baby is unhappy and uncomfortable there is something wrong.

Hypoallergenic formula, if it comes to that, is very expensive. But it is a prescription. From what you say I don't think changing brands of normal formula is making any discernible improvement?

Good luck - you might have to fight a bit for this one.

Update: We saw the paediatrician yesterday as DD is still not gaining much weight and only managed 12oz the other day

The paediatrician was lovely, checked her over and gave her a heart trace and all was fine. She admitted that she didn't know what it was as DD falls somewhere between having CMPA and silent reflux. She's taken DD off the gaviscon and has told us to keep using lactulose for the time being to shift the constipation as she thinks that's causing some issues. We now have ranitidine instead, she told us it could be a good 2 weeks before it kicks in properly though so we shouldn't expect to see much of a change yet. She still wants us to weigh DD every week on the same scales and if she loses anymore we need to call her, or if she has less than 17oz 2 days in a row. We're seeing the paediatrician again in 10 days, if nothing has really changed then she wants to do set of bloods and try DD on a hypoallergenic formula with ranitidine.

DD has been really unsettled since Wednesday and it's really getting me down. I think I remember lactulose can have side effects, so I'm hoping it's down to that as she should hopefully only need another dose or two.

I bet you any money it's milk allergy.

I thought that too apermanentheadache but other than the constipation DD's nappies are fine, she isn't sick and asides from not drinking very much and fussing if we try to give her more than 2oz, she seems fine. Our paediatrician said that if it was an allergy she'd also fuss during her night bottles which she doesn't really (although she still won't have more than about 2oz then either) although admittedly she has started to become unsettled at night too recently. She's not sure it's reflux either though as she sleeps fine on her back at night and she's more than happy to lie down on her changing mat or in the crib during the day, she just prefers being with us after a while!

She said if nothing's changed in 10 days she wants to do 'tests' but she says right now she wouldn't know what to test for and she's hoping that things will become clearer next time we see her.

You are pretty much describing my DS when he was a baby... He didn't fuss as much for night feeDS and was so tired from being up all day he did sleep on his back at night. He very definitely had a milk allergy. Constipation can also be a symptom - it's not always loose stools.

Ditto - my.dd was never sick either, i think she had.silent.reflux as part of the cmpa. Does your dd still have green stools?
I hope your new paed gets to the bottom of it. So she is pursuing it as.reflux ? Doesnt seem too concerned.about the weight issue?
Hope it improves soon. It was very streasful and upsetting when my.dd was suffering cmpa symptoms as i was in firefighting.mode all the time. This meant. it took me.longer than it otherwise would to get my head.round things. I was all foggy. That on top of usual newborn exhaustion of course!
My dd also.always.slept well and never had the crying in pain while pooing.episodes at night. I thought this may be because the digestive system relaxes and slows at night

Update: DD has done really well with feeding and weight gain this week She's averaging about 18-19 oz a day, and actually had a day where she had 24 oz! As such she put on 8oz this week!

The downside is that after 6 days without Gaviscon, and 5 days with lactulose and 3 dirty nappies I thought it was time to stop the lactulose - particularly as she has seemed quite windy with it. Unfortunately we are now on day 3 without a dirty nappy again and she has been screaming and not sleeping well the past two days There was the tiniest smudge of poo on her bottom today, so it looks like she's been trying to go but can't. We're back to lactulose again now! Not really sure what could be causing her problems, it started a couple of weeks before she started gaviscon although she doesn't seem 'truly' constipated in that her poo is harder than normal but not hard pellets, and I know it's normal for FF babies to go every few days but it really seems to make her uncomfortable in-between times.

We're seeing the paediatrician again next week, hopefully we'll get some more answers.

Just an update, more for those who may be going through the same thing

DD has done brilliantly with ranitidine, but still isn't sticking to a centile line and is now at the 2nd centile. She has been very fussy this weekend, and hasn't wanted more than 3oz average at a feed and has been arching her back again, so I'm going to ask them to up her dose of ranitidine. Unfortunately my paediatrician has just gone on holiday so we won't see her for at least another week.

Paediatrician told us before she left that she has to make the 4.4kg mark today, and if she didn't, then they would admit DD to the hospital for a few days for 'tests'. No idea what tests they would be, but she was almost 4.4kg last time she was weighed so I'm pretty confident she'll at least make that If she doesn't make it to 4.6kg by today, then they're going to switch her to SMA high energy to see if that makes a difference. I'm leaving in ten minutes to have her weighed - I'm actually really nervous.

On a different note, does anyone know roughly how long after a feed you should leave it before weighing? We can't always do it just before a feed (especially as our doctors will often run 30-45 minutes late) so sometimes we leave it 2 hours before a weigh-in and give her a 'top-up' to tide her over. The paediatrician has said that feeding 30 minutes before will hugely affect the weight and she needs to be weighed pre-feed, but it's not always practical to do that if it means we have a screaming, hungry baby!

No weight gain, DD being admitted.

Oh no really sorry to hear that op. Hope they get to the bottom of it.

How are things going OP?

Yes, how are things? We are still having probs with our LO (5.5 mo, still only taking between 16-20oz a day :-( )...been referred to a paed dietician so hopefully they'll get to the bottom of it, but wondering how things were going for you?? X

Hi all, we're back from hospital DD had blood and urine tests done, the only abnormal result was a small amount of blood in her urine, but we've been told it could be nothing and they will re-test her next week. They doubled her dose of ranitidine and have given her even more lactulose to take. We saw the consultant who said that he thinks it's definitely a milk allergy, but he wants to give it one more week with the ranitidine before he switches us to a low-allergy milk. Depending on her weight gain by tuesday, they may admit her to the children's ward for a stay.

She's been less fussy since she started on the ranitidine, but still drinking less than she should be but only by a few oz a day so she's doing much better in that regard

I've genuinely never seen a baby so disinterested in milk She has the first 2-3oz fine, it's a battle to get any more in her as she fusses or screams so it's a rare day when she manages to have 4 or 5 oz without fuss! But she's perfectly content not to have more than her 3oz, if we left her alone after that initial feed she wouldn't fuss at all!

Thankyou to everyone who's replied, it was really nice coming back to see I had replies as I am feeling quite alone in this!

Sounds just like my LO...takes 2-3oz usually and no more...he's 5.5 mo and have also been referred. So you aren't alone, and I've been checking for updates! Glad to hear there has been some improvement with the ranitidine. Our dose has been increased too...fingers crossed. I kind of want someone to turn around and say "ah ha! This is why he isn't eating...here's your magic solution!".

Have you found she has drank more during the hot weather? We thought LO had been, but doing the count (we have to log everything) it was still only 21oz. Much more than usual though.

Keep us posted...will be thinking of you!

Am glad you are getting attention from medics and look to be on the way to getting it sorted. Remember the Oz counting well - it really sucks.

Can't believe how long it is taking to get an answer. Since both you and your mother had CMPA as infants I would think that should have been the first thing to consider. Fingers crossed you get an answer soon.

Just another update

DD was prescribed nutrimagin AA today and we're back again in 2 weeks for another review! The only slightly abnormal test they had back was the thyroid one, but apparently it's usually quite high in newborns and is only slightly above that, so they'll re-test that again in a couple of months.

Only problem is that the hospital sent us home with the wrong Nutrimagin! Our consultant was supposed to ring us back today but I've not heard anything, and the Nutrimagin AA is apparently quite difficult to get ahold of.

I'll update when I know how DD gets on with her new formula. Our consultant says that as she's under 5 months she'll hopefully take to it okay.

Dear me - fancy sending you home with the wrong one . Any large Boots can order Nutramigen AA or other specialist milks in, and should have it for you within 48 hours or less.

Hope she gets on with it - we may have, ahem, flavoured unpalatable milks with a variety of substances nesquik for DS.

One of my DC had an unusual thyroid result once - but he has been absolutely fine so I wouldn't worry unduly about that.

I can't believe the problems that you have had being passed from pillar to post! As others have said, it would seem likely that a cows milk allergy is an issue given your history. I had a similar issue, I was intolerant to cow silk as a baby as was my daughter when she was a baby (fine now). She had nutramigen and was like a different baby! DS who is 6 weeks is starting to display all the same symptoms, I took him to GPs yesterday and walked out with a prescription for nutramigen. His approach was, it won't do any harm, give it a go. He's currently kicking about on his playmat without screaming for the first time ever!,
Good luck, I hope you get things sorted, and as my story shows, not all GPs are as useless as yours seem!