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How to get baby medical support without GPs support?(48 Posts)
For 3 months my baby has fed pretty much hourly between the hours of 5am and 8pm. (and wakes about 11pm and 2am for feeds), we get through 10+ dirty nappies every day, he has terrible wind and is constantly "grizzly" - and by that I mean writhing and groaning and generally looking incredibly unhappy. He is breastfed and will not take a bottle (of expressed milk) without extreme fussiness. On the plus side he seemed to latch on pretty well and fed hungrily, if only for 5-10 minutes at a time. He rarely naps during the day though and always looks tired and often unhappy lying on his back or being cuddled inwards.
We've been to various breastfeeding groups / Health visitors / Midwives / Baby clinics for advice about the frequent feeding as it's been so hard to keep up with and finally after some frothy green nappies we saw a private breast feeding consultant at 12 weeks who pointed out that he had a really obvious tongue tie. we had this separated but since then his feeding has been sporadic and often very very fussy. He's still incredibly unhappy and writhes around a lot. His nappies are getting very liquidy and dark green and the breast feeding consultant told us to take them to the GP and get them tested incase he has an allergy. Unfortunately our doctors are next to useless and told us that they wouldn't do anything about them and as he has been putting on weight there was nothing to worry about in regards to his feeding.
We are completely at the end of our tether. My husband has stopped working to help me during the day as we are in a constant cycle of soothe, feed, change nappy and it's soul destroying. Does anyone have any suggestions at all about where I can go to get my son some help? It is clear to everyone who meets him that this is not just a normal level of infant fussiness / grizzle. He is clearly very uncomfortable and distressed.
That sounds tough and so frustrating. I can't help I'm afraid but hopefully this will bump your thread.
When my baby had awful nappies and was unhappy during/after feeds, they treated him for silent reflux and also cows milk protein allergy.
As he's breastfed you could try to cut out dairy to see if that makes a difference - not easy but worth a try.
In your shoes I'd be tempted to either change your gp to a more sympathetic one, or enlist the help of your health visitor as I understand that they may be able to refer you on to someone who could help.
I think you can pay for a private paediatric appointment which would be cheaper than DH not working! If you find a local private hospital they could probably point you in the right direction.
There aren’t many concrete tests that are reliable for non anaphylaxis allergies, so the best thing is to keep a food diary and try eliminating certain food from your diet. The common ones are dairy and soya. You need to do it for about 3-5 weeks to know if there is an improvement. It’s actually not too hard these days due to almond milk etc. This is the advice we got from dietitian and Paed with similar symptoms.
Actually, have you tried giving up dairy from your diet? My DD didn't suffer as badly as this but I did try giving up dairy. I'm not sure if it helped but now she's on solids I have kept her off it. She was definitely comfort feeding because she was uncomfortable/in pain so it was a vicious cycle.
^obviously make sure you are still eating a balanced diet and getting enough calcium. They advised I take multivitamin just in case.
Change GP. See if you can find a local GP who may be more sympathetic to making a referral to a paediatrician for you. Alternatively, if you can afford it at all, see if you can see someone privately. It sounds awful for you all and it is horrible not to be listened to. I wonder if you HV could refer him to the Paediatric Team? Or if you have a local Urgent Care Centre maybe take him there. I know it isn't really "urgent care" but if it is the only way to get him seen by a specialist, then you should do it. Poor little guy! Poor you too! Sounds like you are doing an amazing job in very challenging circumstances.
Thanks for the suggestions .
I'm going to try calling the Health Visitor tomorrow. We've also booked him in for cranial Osteopathy based on the tongue tie clinic and the breast feeding specialists suggestions. I'll cut dairy out, although to be honest I don't really have much dairy as I don't have hot drinks and trying to be healthy so not been eating much cheese! I was trying to keep a food diary, but as he's always awake and always needing to be held and comforted it's been pretty hard to fill it in! Am very concerned that his feeding issues are whats causing the wind etc but can't seem to get much support at all and we've been told not to take him to get weighed again as the fact he dropped a percentile is "not a concern" so have no way of measuring whether or not he's getting what needs
Called another local GP earlier to see if we can switch to them, but we're just outside the catchment area so waiting to see what they decide! Am reluctant to take him back to ours as they never seem in the remotest bit interested. Didn't even check to see if he had tongue tie when I listed all his problems (which I've since discovered are all key tongue tie issues!) just said "some babies are like that"
You poor things. This does sound like possible cow’s milk protein allergy. Does he have eczema as well? As others have suggested, try completely cutting out dairy from your diet for 2 weeks (check all labels as is often sneaked into lots of foods). If he is CMPA the improvement can take several days. If an improvement is noted it is important to confirm the diagnosis by reintroducing dairy after 2 weeks and if his symptoms recur you can be fairly certain and cut out dairy. (Vit D and calcium supplements are important for you if you do this). Please seek a second opinion from a different GP if you’re not being supported as you will need additional support during weaning etc. Good luck
Thankyou. He doesn't have eczema, or rashes etc The only visible problem he has at all is a constant nappy rash from pooing all the time! Poor thing may as well have shares in sudocreme
That sounds really hard
Which area of the county are you in? Maybe someone can suggest someone?
Keep persisting with the doctors or HVs it doesn't seem right, esp those nappies.
Another one popping up to say worth trying going dairy free.
I'm definitely going to give dairy free a go. It can't hurt right!? Did you give eggs a miss too? or just milk products?
My little boy is allergic to cows milk and his symptoms sound almost exactly like your little boy's.
If you can manage to cut out dairy and keep breastfeeding, you'll have a much better time of it. The dairy free formulas are disgusting!
I'd given up breastfeeding before we realised what the problem was but I do wish I'd carried on.
Thanks for the advice, I fully intend to continue breastfeeding if at all possible, just hoping that this does improve matters.
I can't decide whether to go back to the doctors and suggest it or not, mainly because I suspect the idea will be dismissed immediately in a sort of "neurotic parents who can't cope with a crying baby self diagnosing" manner...
I cut out dairy - takes two weeks for it to be completely gone from your system. I kept a diary so I would know if there was any real change, and it was amazing. Happier, settled baby with normal poo. Unfortunately on weaning we found a load more allergies/intolerances, but she has grown out of most of those now. Try it, it's worth a go!
the BF consultant said to get his poo tested for an allergy? S/he knows sod all about allergy tests then. But it would certainly be reasonable to get some input from paeds/consideration of CMPA. I'd go back to GP (maybe a different one?)
Another one saying possible cows milk protein allergy. You need to cut out all milk and soy products (50% cmpa are also allergic to soy). Milk, yoghurt, cheese, chocolate. Check labels as lots of things have whey powder and other milk derivatives in. You need to do it for at least a month ideally.
My DS started with lots of diarrhoea type nappies at age about 6 months. He had been ill with a cold so for a while all we got was it's a virus and it will sort itself out. 3-4 weeks later i was struggling to cope as he was having 10-12 dirty nappies a day and it hadn't improved.
My GP suggested it could be lactose intolerance (rather than an allergy) and we got given special formula. I was still breastfeeding some of time but was told to cut out dairy.As I'm vegetarian I thought this was going to be really hard (and I didn't realise at the time there was so many dairy free / non-soya alternatives to cheese etc)
However, within 3 days of cutting dairy and using the formula, we were sure it was lactose intolerance. DS poos were back to normal frequency. It was like a bloody miracle ...
Looking back I think DS struggled with dairy from the get go. He wasn't a brilliant feeder and fed little and often and didn't pile on weight like some of his peers. He also got lots of wind and seemed to be a bit uncomfortable at times. I think a virus pushed his body over the edge and it became clear he couldn't tolerate a lot of dairy. This is common apparently. He also had eczema though
I'm a GP and had a baby with CMPA with similar symptoms except that he started to drop down the febrile charts after 4 months. Sorry your GP is not helping you. I'd try another GP at the practice or if you have a dietitian service you may be able to access that directly (ours was in the community centre with health visitors). I would also trial a cows milk free diet immediately, if your baby clearly improves you can try reintroducing or if you are sure it is due to CMPA just go and see someone to discuss it. Ask your GP for a paeds referral, quite often we used to see this type of case on the ward within a few days when i worked in paediatrics.
Sorry that should say centile chart!
ps - the formula did smell like chip fat but DS didn't mind taking it as he was so young.
Thanks Everyone. I've got almond milk in today and some cheese altenatives. Unfortunately some yoghurt I ordered turned out to have soya in them - gutted I was looking forward to trying them! !
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