Fed up of doing doctors jobs….

[TheCluelessMum]

DS was born @ 33+5 weighing 4lb4oz. He is now 10 weeks and 8lb1oz

He was sent home on SMA prem milk. He was quite uncomfortable, he would never not be whinging/crying if he wasn’t asleep or feeding: and HV advised 2 weeks ago to try nutramigen as she suspects CMPA. GP didn’t even ask for symptoms, just went off HV say so for milk.

Started nutramigen, he seeemed much happier. We actually had a baby who would engage with us and seemed so much more content. He would go out in the pram Happy as anything. He would be able to be lied on his back without rolling around bringing his knees to his chest.

DS is weighed weekly by the SCBU outreach team due to being prem. last week he lost 100gram. This week he’s gained only 50grams. He has gone from about 20oz a day to 27oz a day… but only gained such a tiny amount.

The SCBU outreach team told us to return to the SMA milk to make him gain weight, they’ve never been convinced he has CMPA.

He has been back on the SMA milk for 3 days, and has been so uncomfortable in pain for hours today. It’s so heartbreaking to see.

The community outreach team told us to get the GP to prescribe a higher calorie milk…. But then said actually only a dietician can prescribe that. The GP prescribed anyway, turns out it had cows milk in so we can’t use that.

We spoke to GP again, who wasn’t really sure about anything. But prescribed us high calorie milk without cows milk, as I think we put a lot of pressure on. So hopefully we will have a comfortable boy who is also gaining weight.

I text the outreach team today to say he’s very uncomfortable on old milk, they just replied and said “go back to the allergen milk” but that doesn’t make sense cos he won’t gain any weight which is what the issue is.

The dietician referral will take weeks

AIBU to be so stressed that we are having to do all this chasing for this. I feel so unsupported by all healthcare professionals. We have been told so many times to “wait for dietician appointment”… how can I genuinely wait for 6 weeks for my 10 week old being in pain??? I’m at a loss. I 100000% understand the pressures of these departments… but we could get it sorted in a phone call…. Me & DP are constantly researching things and are quite rightly concerned about DS weight loss. But it seems like nothing will get done until situation reaches crisis??????

Put him back on the milk that doesn't make him uncomfortable and gradually increase the qty. He will gain weight from it. If he's content and full from it then stick with that

Total sympathy here but sadly no advice. I was told I had a 12 week wait for DS to see a tongue tie specialist (it wasn't a simple anterior tie) . Absolutely no suggestion of what to do in the mean time.

I’m so sorry, I have been there with DD and it was horrendous to have to to wait while she’s in pain. It really shouldn’t happen, but it does in the NHS. Waiting times don’t reflect need or urgency, they reflect rationing and budgets. And patients suffer in the meantime.

Can you go private? That’s what we did. Saw someone in 2 days and he was brilliant - much more proactive than the NHS doctors had been.

Babies often grow out of the grizzly stage by themselves around 3 months . Until that time you just have to hang tough. It may not be possible to have your little one tolerate a high calorie milk so you are between a rock and a hard place.
you are pretty lucky to be in text contact with Scbu outbreak who have given their advice. Unfortunately GPs are not trained as specialists in everything- their role is to point you in the right direction - scbu/a paeds dietician. Resources are really limited in the NHS - that’s the reality of it. Sending lots of sympathy, I’ve been there!

You need neocate milk. I believe it's higher in calories and is completely cows milk protein free - unlike nutrimigen which still contains some cmp. My DD was packing on the weight on it. It can be hard to get prescribed because it's so expensive (£38 per half tin if bought over the counter!) Honestly just take your DS to A&E where a paeds consultant will be able to prescribe it. That's what I did, I wasn't prepared to wait with DD being in such obvious pain. Even then I had to ask to see the consultant because the registrar tried telling me it was normal!

Personally, I would use the milk that was clearly working for him and didn't make him upset.

If he is consuming several bottles of several ounces a day he can't not gain weight forever?? Surely they need to give it some time. A small gain is still a gain. If he's producing wet and dirty nappies and isn't screaming in pain I'd take that for a couple of weeks and then see what the situation is.

People survived without incessant weighing and measuring, it can be a bit much sometimes.

I'm not saying ignore their advice forever, but it was clearly shit advice to go back to a milk that was upsetting his tummy, and weight gain won't happen overnight they should give it chance!

He's only 10 weeks, they all go through this gripey stage where it seems nothing works. Most likely he isn't allergic etc etc but all the swapping round of milks doesn't help. Pick one, stick with it if he seems OK enough and go from there. We've had great success on kendamil if you're not totally sure if it's a cows milk issue might be worth a go.

I agree with this too, all the weighing etc isn't helping anything.

the switching back and forwards of milk probably isn’t helping, we were told to change one old milk bottle a day to the new milk until you’d done them all. (E.g. 1 bottle new milk day 1, 2 bottles day 2, 3 bottles day 3)

we needed to use a different brand and it took 6 weeks to properly start having an effect.
it was so so hard but totally worth it

Hi @TheCluelessMum , just read your post and I know exactly how you feel! I’ve had a nightmare with my ex 28 weeker (born august). She had severe reflux, and completely fell off the growth charts, turns out it’s all been due to CMPA amongst other allergies (she ended up tube fed due to failure to thrive). Was told
from the beginning her vomiting couldn’t be due to CMPA- wish I had listened to my instincts! So I will shorten my daughters story because it’s long but she was on - breast milk, breast milk with fortifier, SMA gold prem 2, Infatrini peptisorb, alfamino then finally our magic milk- neocate!!!
For a start- you need an amino acid based formula not a partially hydrolysed formula
like nutrmigen- it still contains cows milk just broken down lots. There are NO high calorie amino acid based formulas, infantrini peptisorb is a partially hydrolysed formula and so still has traces of cows milk and that’s the only thing closest. Instead, your dietitian will need to concentrate the formula but doing less water to powder. However, once the gut has had time to heal it may not be necessary to concentrate.
now this is just anecdotal but when I see preemie mums I feel I have to say. My daughter was on alfamino and her gains were very poor, hence the tube feeding. Even when we got the tube in her she wasn’t gaining great. I asked to try neocate and she went from 80 gram gains to 280 gram gains. The reason I tell you this is I’m close with another baby (due day before my baby but born at 33 weeks) and he was the same, born 99th percentile and fell off the charts, went on alfamino and Barry gaining, I told her to ask to try neocate and he has been gaining 250 grams a week since. The dietitian department where I live has changed their practice to offer prem babies neocate first line due to how well they have both done.
in terms of next steps, I would speak to GP to try amino acid formula, if no joy then I’d join the CMPA trade FB group and get some neocate to try (it’s like £40 a tub to buy). Hope this all makes sense posting in a rush pre nursery run but hope this helps xx

@TheCluelessMum the dietitian will concentrate following guides like this x

Been in a similar situation with baby with CMPA. No support whatsoever even though baby was so distressed and just stopped feeding. Took baby to private paeds consultant who decided baby needed Neocate. GP prescribed with no question after that. Happy baby post neocate. Would def advise private consultation as no one will challenge what the consultant says.

@TheCluelessMum also I’d get baby checked for a tongue tie, my daughters severe tie was missed her whole 9 weeks in hospital, had to be cut twice as re attached. Can also explain poor weight gains due to poor transfer of milk and cause colic symptoms. Doesn’t matter if Not BF still affects latch to the bottle x

I almost feel annoyed & put him back on the old milk knowing how uncomfortable he was before. After him screaming most of the night, we have returned to nutramigen… we have a prescription being prepared of infatrini peptisorb for him. I’m not prepared to put my son on something that causes him pain any more.

would look into private but wouldn’t know where to look? We are SE England.

I find it mind boggling that in order for our babies to receive care they deserve we’re having to take them to A&E or waiting for them to loose so much weight they are admitted. Doesn’t seem logical.

thanks for your responses, makes me feel less alone.

@Fedupmum21 thanks for your response… DS seemed fine on nutramigen just didn’t gain the weight, so hoping infatrini peptisorb is the one

@TheCluelessMum Id honestly recommend trialing an amino acid formula, for us the alfamino stopped all her symptoms but there was something in alfamino that caused my daughter to not gain weight. Her consultant gastroenterologist said CMPA is really common on preemie babies, so just to be wary re giving the Infatrini peptisorb as for my daughter despite it being high calorie she didn’t gain because it’s still has cows milk in it. The amino acid formulas are easier for their premature guts to
absorb x

@Fedupmum21 great to know thanks soooo much!!!!!!!

Hi OP been there and it is hard. DS lost birthweight and didn't gain much weight for the first four months - this was put down to me not producing enough milk and went on a regime of breastfeeding, pumping and bottle. It nearly broke me. Constant obsession by HV etc with weight, insisted on weekly weigh ins, but no real acknowledgement of fact he was windy, constantly arching back while / after feeding, always wanted comforting and had lots of dirty nappies etc.

Developed eczema at 4-5 months. Just after this (almost 6 months) DS started having a lot of dirty nappies - about 8-10 day. for weeks put down to a viral infection - had him to GP number of times and hospital once. Put down as an overanxious mum. Eventually GP suggested nutramigen - he was a different baby, calm, not so needy, the dirty nappies reduced to 2 per day. Turned out he was lactose intolerant.

I felt so alone and not listened to. I felt let down by every single medical professional during that first 6 months who missed every sign there could be a cows milk or lactose issue, and who fobbed me off (apart from the last GP I saw). Don't give up, stick with the nutramigen and see how it goes for a couple of weeks, it may take a while for your baby to start drinking the quantities they need as they will be catching up. We also started introducing a small amount of solids at 5 months on the advice of the GP which is against recommendations but helped DS.

This was 9 years ago and I'm saddened to think that your experience is as difficult as mine was.

Thanks everyone. Feeling stressed about DS loosing weight. Being weighed on Friday again.
hoping for a gain…
no one has discussed what happens if he keeps losing weight???? As referrals to peads/dieticians are taking weeks????
so confused and feel frustrated at lack of support for DS.

Have they told you you'll be waiting weeks for a dietitian appointment? My friends baby also has CMPA and she spoke to a dietitian within a couple of weeks and she has had telephone appointments frequently.

@mummyh2016 6 weeks apparently untill telephone consultation… unless he drops below 1% on percentile. Currently on 10%.