To try to get a specialist to see my baby?

(56 Posts)
CorraLinn Wed 23-Nov-16 13:20:26

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

2014newme Wed 23-Nov-16 13:22:24

I would have asked for a referral a long time ago. Ask your gp to refer you to a paediatrician.

fuzzyfozzy Wed 23-Nov-16 13:22:46

I'm no expert!! Have you thought about a milk/gluten intolerance? I've heard about this being passed through your milk?

Gingernaut Wed 23-Nov-16 13:25:51

Lactose intolerance? To answer you question.

No you are not being unreasonable.

CorraLinn Wed 23-Nov-16 13:26:56

Bit more info...
He had hiccups at least once a day whilst inside me and after nearly every feed until around 4 months. He doesn't have them now. He sounds a bit 'snorty'. This is maybe in the last month. When he's breastfeeding it sounds like the back of his nose is blocked up.
The poos I would describe as the consistency of clay and they're grayish brown.

PotatoIsSoHandsome Wed 23-Nov-16 13:29:31

Take him to the gp and ask for a referral . I would also take a picture of his poop so the dr can see what it's like

aginghippy Wed 23-Nov-16 13:31:39

YANBU at all. Go see the GP and ask for a referral to a paediatrician.

Justwhy Wed 23-Nov-16 13:34:34

My child is exactly as you describe and also 7 months. She was on ranitidine for reflux which made no difference. I have just been referred to a paediatrician. i told the doctor that I have cared for hundreds of children in my time and she is the second most miserable child I have ever met.

CorraLinn Wed 23-Nov-16 13:40:12

Justwhy I actually started crying when I read that. I feel really bad for him as he seems miserable so often - and so sunny when not! How was your DD's birth?

I actually feel really upset about it as it has caused bonding issues with other family members. My mum and DH in particular struggle with him and haven't bonded in the same way with him as they did with my DD and it breaks my heart.

I have just emailed some friends who work in the NHS locally to see if I can get a recommendation for a good paed I could ask for a referral to.

I also wondered about trying a cranial osteopath. I tend not to believe in these kind of things but I have heard positive reports about them. I wonder sometimes if the issues are related to being stuck in a transverse position so long and birth trauma.

CaesiumTime Wed 23-Nov-16 13:41:28

Photograph poos and make a pictorial diary. Video distressing behaviours. Document weight / growth on a clear graph.

Take written evidence to your GP - this is very helpful. Ask around for sympathetic Paediatricians in your area and go armed with the name of the Paed that you want to see. In the UK the paed is usually the gatekeeper to the Paediatric Gastrointerologists, etc unless you can access a clinic of some sorts where you might see a team (dietician, Paed, etc).

Providing evidence on which your GP can base a referral is your best start. Photos are helpful - don't be squeamish about photographing poos!

Alternatively, you can self-refer to a private Paed if you can afford it. If they think that baby needs further testing / tertiary referrals then they can recommend it and you can take it back to your GP. It's frowned upon generally but if you are being consistently fobbed off then it might be an option.

CaesiumTime Wed 23-Nov-16 13:42:07

sorry x post - with you, OP. Good luck with it all.

SomewhatIdiosyncratic Wed 23-Nov-16 13:45:38

Go to the GP. Be persistent.

DS1 had cows milk protien and egg allergy and also intolerant to soya. He was fine until 5 months when he became unsettled during a growth spurt. I gave some formula to save my sanity, and with hindsight that's when the eczema broke out. When we started weaning, his face suddenly burst into swelling- I could see his eyes closing up from the swelling, and I rushed him to the GP at full speed as the quickest way to get help. Despite that, It took a couple more trips to the Drs to get a referral to the hospital to get it all identifed and on the right diet.
His stools were vile. Every poo would blast out of the nappy from neck to knee, and stink. It would mystify me at baby groups when clusters of mums would sniff nappies to check who pooed- I knew it was DS brew from the opposite side of the room! Because his digestive system was uncomfortable, he wanted long and frequent night feeds to comfort it. He was worse at 9m than as a young baby.

DS2 didn't get on with tomatoes- they would "burn" his skin on contact and after poos.

What you're describing isn't "normal" and needs help with identifying the triggers.

SomewhatIdiosyncratic Wed 23-Nov-16 13:48:16

By coincidence, DS1 had a tough labour and emergency entrance in to the world, and was also a very hiccupy bump!

Vintagegoth Wed 23-Nov-16 13:50:49

My eldest was exactly like this. I was fobbed off by HVs and GPs. Told to let her "self-settle" when she was screaming the house down at night, waking every 2 hours. In the end I discovered she had an allergy to milk and egg. She gradually grew out of it by age 2. My youngest was the same, but because I recognised the symptoms I was able to remove egg and dairy from my diet while ebf. A referral to a paediatrician comfirmed the diagnosis. Push for a referral. Keep a food diary in the meantime. Trust your instincts. Good luck.

cherrypiemay16 Wed 23-Nov-16 13:56:10

Hi, poor you. My 6 month old is very similar in lots of ways. We have come out the other side though after lots of trial and error and fighting to see the right health professionals. He has silent reflux and cows milk intolerance plus soya intolerance. If I was you I'd see your GP and as I for an urgent referral to the dietician and paediatrician (there's always one with an allergy interest). I would want to trial ranitidine for reflux straight away, this worked a treat for us. They may fob you off with gaviscon, doesn't work for many and makes them terribly constipated but maybe worth a go. If not much better then go dairy and soya free (often these allergys ho together). The red bottom is classic of allergy, as is the unsettled tum, no sleep etc etc. There's a CMPA facebook page one for weaning and one for breastfeeding which you can join, so helpful. It's definitely worth trying. Sorry I can't remember if you said you were breastfeeding, if you are, and cut out dairy, up your calcium intake, this is so important. My baby has pat milk in food and loves it. We also have some neocate formula too. He's a different boy, he's finally become the happy baby I knew he was but it does take time. Good luck! X

cherrypiemay16 Wed 23-Nov-16 13:57:32

Oh yes and a food diary would be good for when you see someone. Also, we saw the cranial osteopath which I'm not convinced helped but would still try again if I was in the same situation especially after a difficult birth x

JoMac03 Wed 23-Nov-16 14:01:47

I took my little boy for cranial therapy after a prolonged labour that ended in a forceps delivery. He had three sessions in total and was much less fussy and slept much better after each one. He also did a huge poo during each session but apparently this is normal! It's definitely worth a go, you won't lose out by trying it.
Sending 🌹 and 🍫 to you-I hope things improve very soon xx

strawberrypenguin Wed 23-Nov-16 14:03:55

I'd definitely push for a referral.
Not sure why you gave him probiotics and smeared your 'fluids' on him for a week though. If I were you I'd definitely mention that to whoever you see in case it's the route cause

mumsiedarlingrevolta Wed 23-Nov-16 14:05:24

Could he have a hernia?
It is definitely not right so hopefully Paediatrician will look with fresh eyes and help you sort you poor DS.
You are entitled to push here to get what your baby needs.
Good luck

bulldogmum Wed 23-Nov-16 14:05:55

Def ask for a referral, sounds like you've battled far too long already with no help. We had the same fob off from GP about colic and in the end saw a private paediatric gastroenterologist and within 2 days of diagnosis we had a changed baby. And she started sleeping properly (6-7 hours at night and now at 9 months sleeps thru the night).
DD had cows milk protein allergy and silent reflux and her symptoms were very similar to what you have described.
She has outgrown it now and on full dairy and off all meds. It changed everything.
Ask for an immediate referral and if no luck can you get a private appointment? Once you have a diagnosis the gp will fulfill any prescriptions you need for formula or meds so it'd be the cost of the one appointment.
In the meantime cut all dairy from your diet, it passes through breast milk and avoid any dairy foods for your little one. I really feel for you and sending you hugs, it's such a lonely and despairing place when you feel like you're getting no help. But it's easily sorted if you can get a referral.

Onlygirljen Wed 23-Nov-16 14:09:40

Sounds exactly like my youngest DS (now 4). We all spent the first months of his life utterly miserable - you have my sympathy! I suffered from PND and I'm convinced this was the root cause.

In our case DS had silent reflux and CMPI. Medication and hypoallergenic formula sorted out the problems and he transformed into one of the happiest boys smile. I went directly to kids hospital A&E on the advice of my gp. As soon as a consultant paediatrician examined him and listened to our story he diagnosed and started with a treatment plan. Be persistent - you will come out the other side, even if it doesn't seem that way right now.

CorraLinn Wed 23-Nov-16 14:10:53

strawberrypenguin - babies born by CS don't get the normal intake of friendly bacteria from the mother's vaginal fluids at birth. It's common to smear some of your own fluids on the baby's mouth and nose after birth to try to make up for this - I did this using sterile swabs shortly after he was born. There's scientific evidence that it improves outcomes - this New Scientist article quotes studies www.newscientist.com/article/2075768-boost-c-section-babies-by-giving-them-vaginal-bacteria/
In terms of the probiotics its the same principle but given over a longer time period - I use Biokult Infantis which is suitable from birth. C section babies have a different gut flora from those born vaginally and their gut will be colonised by the particular bacteria in the hospital (we were in for 3 days) so I used the probiotics to boost his 'friendly' bacteria.
I'm not sure how either of those could be the root cause but I will mention it to the paed of course.

Newmanwannabe Wed 23-Nov-16 14:20:22

Try not to change his diet too much until you see the paediatrician. If he gets tested for coeliac disease he has to be eating gluten to get an accurate result. I think for dairy allergy testing they need to be eating that too.

What's his mouth like? Could he have a tongue tie? They have a reputation for causing unsettled unhappy babies. Good luck

CorraLinn Wed 23-Nov-16 14:24:13

Thanks for all your replies, that's really helpful.

We can afford to go privately so waiting for recommendations from friends for good paed.

vintagegoth, cherrypie and bulldog - Given the possibility of CMPI I am thinking I should try cutting out dairy now as nothing to lose? The only dairy I eat is cheese (3 or 4 times a week) and chocolate - I eat half a big bar of Green and Black's 70% dark chocolate daily. Would that be enough to cause the problem? I don't eat yoghurt or drink cow's milk or any other dairy... I eat eggs once a week. I don't eat soya (drink coconut or almond milk). I drink 3 cups of strong green tea a day (nothing after 5pm) and have wondered if caffeine isnt helping either.

Also how long do you think it would take to see results if I cut out dairy and that's the issue?

CorraLinn Wed 23-Nov-16 14:32:03

Newman - thanks that makes a lot of sense on not changing diet until we get a diagnosis. His mouth is fine and definitely no tongue tie - I had this checked twice as my DD had tongue tie and a lot of damage was done to my nipples whilst trying to establish breastfeeding - was like night and day after snipped. He is a good feeder - latch has always been good. He is insatiable - I think he uses feeding as a comfort and just wants to do it all the time. I think it's partly why he's so big.

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