To try to get a specialist to see my baby?

[CorraLinn]

Hi
I have a 7 month old DS. He has had stomach issues and been very unsettled since birth. He was born by planned section but I went into labour the day before so laboured for 14 hours beforehand. He was transverse and the consultant used forceps to get him out as he was very tightly wedged.
After birth I gave him probiotics for a week and smeared my own 'fluids' in his mouth and nose to try to overcome any issues with a lack of friendly bacteria and C section. He has been exclusively breastfed from birth.
He had colic for the first 4 months, regularly being awake for hours every evening and during the night screaming and nothing helped. He was sick to some degree after every feed - sometimes a lot, sometimes a little. He had disgusting smelling wind every day. He has had a bright red ring around his bottom from 1 week old. It's not a skin irritation or nappy rash ie it's not surface irritation. He only does a poo around once a week. The poos are thick, pasty and smell awful (not like breastfed baby poo should smell). There are no green, frothy poos that would indicate intolerance.
The colic has now passed and he is not often sick. The poos are still infrequent and horrid. I have now tried introducing a little solids - baby led weaning style so he helps himself to what he wants. Things like brocolli, greeen beans, thick soups, pasta etc.
He is a very unsettled baby and spends a good proportion of each day screaming - not crying, actual screaming. He is fussy all evening and finally conks out around 11pm. He doesn't sleep well at night. We cosleep and he wakes every 2 hours or more for a feed. He sometimes settles after a feed and sometimes not. I have noticed that since introducing food, it he eats any solids he seems to be in pain with his stomach during the night and is even more unsettled. He screams the instant I put him in the car seat and car journeys are screaming from start to finish. The sling used to help with fussiness but he even screams in that now too.
He was 9lbs at birth and he is short - 25th centile for height and around 90th for weight and this has stayed pretty much the same. So despite all the throwing up etc, he is quite a chunky boy.
I've mentioned all the above to HV and GP. HV was sympathetic but said that docs would just prescribe antacids etc which would bung him up more. GP was dismissive - of course he cries, he's a baby etc... I feel that I know the difference as I have a 2 year old DD who cried of course but didn't scream like this and although difficult (as all children are to a degree) didn't seem distressed like this. He is actually a really cheerful, sunny child aside from all this - always smiling and wanting to be involved in family life when he's not distressed. This isn't right is it?
I am now thinking of asking for a referral to a specialist for potential tests and diagnosis. Would I be unreasonable to do so? Is this normal for a baby? If I was going to ask for referral who would it be to? A paediatrician? A gastroenerologist? What tests would be useful? Or should I just accept as normal baby stuff?
Thanks

Well when it's known that very early weaning can have knock on problems I wouldn't give a newborn probiotics which is why I wondered if it could have started something.

I'd push hard for a referral.

Your Ds sounds very similar to my ds who is also CMPI and soya intolerant. The red ring around his bottom absolutely sounds like an intolerance. Don't be thrown by not having green poo - we didn't either.
The books say it takes two weeks to clear all dairy out of the system but we saw huge improvements within 2 days. We did however also find that once he felt better it still took a long time to change the 'bad habits' we had all acquired in trying to get him to settle (hourly night feeding/co sleeping not through choice/wanting to be held upright all.the.time). For us going dairy free meant me having absolutely no dairy at all while I was feeding him. I don't think it's related but I did also really have to watch how much caffeine I had with him while I was bf - much more so than the others - or he would be colicky for a few hours after.

My ds2 ebf was the same, poor lamb spent all day screaming crying drawing his legs up the only thing that settled him was more feeding but within mins he was the same. He only slept from being exhausted from the crying. Kept taking him back to the Drs who kept saying it was colic which i knew wasn't the case after having ds1. In the end the Dr in frustration said try soya milk. I walked from surgery to boots bought the milk and bottles and by the next day i had a happy smiling settled baby. That was 11 years ago and I've since learnt that soya isn't good for children and i probably should have tried eliminating dairy from my diet 1st but I just wanted to echo what others have said. He has since been diagnosed with milk protein intolerance so cows, goats milk etc still cause trouble, but now its more like an IBS problem. Get him referred it's not right and above all Mums know their children best. Good luck.

A friend of mine was put off by the soya and fish content of the Biokult you give him... Maybe you could see if he does better without?

While you are waiting for a referral could you try giving him buttermilk for a couple of days?

I only say this because my db was very colicky baby some 60 odd years ago and was cured with buttermilk and it is something you could try out without harming him.

You could also try posting on Arnica's facebook page, you can get some very useful advice there.

See allergen info:

www.bio-kult.com/mobile/about-bio-kult/386/bio-kult-infantis

Seeing a private specialist for my DS was the best thing I ever did for him, hands down. Different issues but I think it's the best money I've ever spent in my life. I only needed one consultation.

I'm not saying he's not in pain, but I thought I'd say both my bf 7mo and my ff 7mo woke up every 2 hours or more for feeds. Not necessarily your DS sleep is due to a condition. Very tiring though

Sounds like my dd. Babies don't have to have frothy poos to show intolerance or allergy. My dd has silent reflux and cow's milk protein allergy. She is 5 months so I gave up all milk products and soya. It takes weeks to leave your system. She has one prescription formula feed a day and ranitidine for her reflux. She's like a whole different baby. Not saying she's an angel all the time but no longer spends the whole day screaming.

Forgot to say I also give her baby probiotics which really helped the constipation side of things

Btw it was the hv who did the referral for a dietician for us. There's a great website for cmpa and also great Facebook group. Check the symptoms but that what it sounds like to me.

oh poor you an poor him OP..... I think you are rightt o push for a referral or pay privately.... I cant add anything as neither of mine have had this. But re the cranial osteopath. I didnt believe it could do anything but DS was born with issues with his head and neck and arm (couldnt lift his arm up) and at the same time had a horribly blocked tear duct in his eye. It ran constantly and the skin the the outer corner was really red and sore.

Was told by dr and paeds that he was seeing for other issues, that no one would do anything until 18m as it would probably clear. DH friend is a cranial osteopath who specialises in children. Went to see him eventually and the neck and arm issue was cleared in one session, and the tear duct cleared the second. I was amazed tbh. The osteopath was very well respected and also did lectures at Uni for students, so I did feel that he was very reliable and trustworthy, as he was a friend as well. But the results were astounding.

I would go down private paediatric first and then go from there. I went private for an issue I had after being on NHS waiting list for 4 months and nearly having to give up work. Paid privately and saw specialist and had a diagnosis and treatment within 4 days.

God luck OP

I've just read the start of the thread where you mention Cranio osteopathy. Different reasons to you but my son started to get a flat head on the right. He always looked in that direction and the GP was dismissive but our eldest son has it too. I didn't seek treatment for him (I didn't think there was any) and he mentions it sometimes so I feel terrible. The osteopath (which I was VERY sceptical about!) was like a miracle cure to my youngest. After the first treatment he was looking all around and slept looking left. A few of my friends have taken their children, one for reflux and they have all seen results. The only mum not too took her daughter because she just did t sleep. Not distressed (well the Mum was!) at all but just never slept. Nothing changed after several sessions. She's four now and still never sleeps. Hope you get sorted soon, your poor baby

I had a c section and at no point were "vaginal fluids" mentioned at any point 😕

Is this a thing?!

Sounds like DD before she was diagnosed. She is allergic to dairy and egg. We went private who then wrote to our GP and had us referred into NHS due to the severity of the case.

In her case she had severe eczema so we went to a private dermatologist. We then saw a paediatric allergist - Dr Noimark at the Royal London and would recommend him. Quick google check he works private via Bupa.

"Alexandriaaaa
I had a c section and at no point were "vaginal fluids" mentioned at any point

Is this a thing?!"

Me too - never did that and my baby is very healthy. I've never heard it. Is that actually recommended?

YANBU, speak to your gp and ask who they would refer him to.

CorraLinn re cutting things out of your diet, speak to the GP first, I think.

Please do not delay. You sound very knowledgeable and I am not sure why you waited so long, or asked us first? As a first time mum it is OK to be worried and I think you are right to get to the bottom of this.

I think you need to be ready to push push push for referral.

Good luck.

Sounds like you won't have to make too much change to your diet but you'll be surprised at what dairy and soya are in. Wine! Would you believe! The chocolate you have most likely has soya lecithin in too, worth being super strict at the beginning. I'm so glad I stuck with the breastfeeding, the dietary changes seem a small price to pay for that x

strawberrypenguin - the probiotics are a tiny little dose of powder, it's not like a Yakult or anything so it's not weaning them on to anything solid

3boys3dogs - You are completely right. We have gotten into really bad habits that we didnt get into with DD. Just trying to cope. We are spending our evenings sitting with DS all evening and letting him sleep on us if we can get even a small nap out of him. By this age our DD was in my bed in the evenings and we went in and out as needed until I went to bed. The cosleeping I did with DD and don't mind it (and I wouldn't survive all the getting out of bed if I didn't do it) but DS is now used to feeding for comfort all night long, sometimes as much as hourly. He feeds so much that I run out of milk. I didn't believe that was possible as I know breastmilk is made to demand. However as the night goes on it takes him longer and longer to get a letdown and the quantity he gets is smaller and smaller. By 5/6am he can suck as long as he likes and there's no milk there. Because of the smaller amounts he now sometimes wants fed twice ie he exhausts both boobs then wants another go and gets another two measly letdowns. It's not just comfort sucking, it's going hard at it to get some milk and getting frustrated if it doesn't come.

baconandeggies - thanks for this. He had the Biokult for a week after birth and not since so it's likely not affecting him now. I had thought of trying it again as I think there's a good chance his issues are partly down to poor gut flora but I will hold off for now.

Oracle and Fourkids - I will try the cranial osteopath then. I had trouble myself getting over the section as there was so much pushing and pulling and damage to get him out. I was black and blue from the waist down so I know it certainly knocked me out of shape so must have been worse for the poor wee man.

Italiangreyhound - I'm not a first time mum as have a 2 year old DD. I've been thinking about why I waited so long and I have a friend staying for a couple of days and said to him today 'Why haven't I done more to sort this, it's not like me?' We had a chat and I think it's a few things. Firstly, he had colic and I kept getting told that would resolve after 3 or 4 months. Which it did to an extent. So I waiting for that time to pass. Since then I've tried the GP twice and mentioned to HV every visit since birth and been dismissed. Also, I have a 2 year old DD (17 month gap) and a bit overwhelmed as I'm trying to hold down a job (albeit part time) as well. And I was the advocate for my dad who had terminal pancreatic cancer - it was 18 months of non stop pushing, dealing with doctors etc and it was just so exhausting. I think I've lost a bit of my fight there and I know in advance how frustrating it will be.

But I think the main reason is sheer exhaustion. It's a vicious cycle being completely exhausted by DS so that I can't even think straight or string a sentence and then knowing I need to do something and not mustering the wherewithall and then we're all getting more exhausted. Because my friend is here for a couple of days I've had the chance to come on here and get some info (quicker to get other peoples' views and experiences than do loads of research myself) and find a bit of headspace away from the screaming to get started on sorting it out.

But fundamentally I am really disappointed with myself because I should have done something sooner and put my DS first...

So my plan of action is:

1. Cut out dairy, soya and caffeine from tomorrow (This is going to be really hard as cups of tea and chocolate are my crutches!)
2. Get referral to paeds (gastro specialist if possible)
3. Try cranial osteopath

Thanks all for your replies. It's been super helpful.

Osiris and Alexandria - yes I guess it is a 'thing'. My DD was also born by section and I didn't know anything about the gut flora issue at the time so I didn't do anything about it and she's been completely fine.

There's other Mumsnet threads about the vaginal fluids, it's sometimes called 'seeding' There's a danger of passing on Group B strep, herpes, chlamydia, gonorhea etc by doing this (equally these could be passed on in a normal vaginal birth) so I was tested just before the birth as I had agreed with the gynae etc that I could bring in the swab and do the seeding but they said I had to do it myself as there isn't yet enough evidence for them to recommend it.

www.mumsnet.com/Talk/pregnancy/2576277-c-section-seeding-and-allergies-asthma

I'm not an expert on it and not recommending any particular course of action. I just researched it myself after a colleague who works in the NHS mentioned it and on balance I thought it was a good idea unlikely to cause any harm if done safely with the testing beforehand and likely to bring benefits to the baby.

Our second baby sounds very similar and I can't rave enough about just what a difference a chiropractor has made. Please please give it a go. Just one session.

Can you explain what you mean about smearing your own fluids in his mouth please.

Helena, she did, 15 mins before you asked.

Here are my top tips for milk free normal food:
Oat milk is the milk I use. Not nice, but the least horrid
Jackson's (on Ocado and in other supermarkets) and Tesco finest are I think the only supermarket normal breads that are milk and dairy free. Part baked French stick, pitta, bagels are usually fine.
Lindt 70 % dark choc is very nice
Stork blocks of marg are df and sf
Pure is the best spread in my view
Can't find any nice fake cheese as it's mostly made with soya if not animal milk
Booja booja ice cream is the best
Bourbons and ginger nuts are usually df and sf
Ready roll puff pastry is df
Check things like stock cubes, gravy, popcorn, crisps as most have milk or soya in.
I know some wine has it in but I decided it must be so negligible to not restrict myself on the

Not RTFT, but would you consider seeing a cranial-sacral therapist? My little one was born via section and would literally scream the house down for hours every single day, nothing helped, even medication that the doc 'helpfully' prescribed... On the first visit it was explained that as LOnwas born via section, they hadn't had the usual contortion that a vaginally birthed baby does and this had put them out of sync, it only took 2 visits and after the first LO actually didn't cry or scream... Worth a try?

Smeared your fluids in his mouth?