Please help! At my wits end with baby's symptoms. CMP allergy/intolerance?

[ImNotAnsweringIt]

DS is 6 months. He was a terribly fussy newborn, showed signs of silent reflux, but eventually over supply/fast letdown issues were diagnosed. Various management techniques helped, along with Colief. This presumably helped with the lactose overload - I don't really know, only that it made him into a different baby.

However, he stopped sleeping, in hindsight, probabaly around the time I stopped giving colief (D'oh!). It was such a sleep-deprived blur I am not sure (instructions said they shouldn't need it much after 12 weeks).

All I know is I now have a 6 month old who wakes just about every 1 1/2 - 2 hours with flatulence (very smelly and noisy) and what appears to be stomach ache. I sometimes feed back to sleep, sometimes just pat/cuddle (co sleeping as only way I can survive this). He writhes around, grunting and clearly uncomfortable, though not fully awake and can do so for hours, or just frequently for a few minutes.

He is EBF. I have been dairy free for 3 weeks now and saw little effects except his (minor) excema cleared up (oh, and I am starving!). He is hungry for solids but when he has them he is up all night with stomach ache and flatulence (tried 100% baby ric with ebm and fruit/veg etc, all same results) and diahorrea the next day.

The last 4 nights I have given him Colief before bed. He slept 6 hours! Then last night back to being awake all night

Just as I thought I'd cracked it. This can't be right can it? Do I need to cut our soya too? I am awating referral but so desperate for sleep right now would love to understand the cause of his wind problems. I feel my older DS is missing out as I am so tired. Can anyone give me any advice, I understand so little about allergies and suchlike.

DH has hayfever and FIL has excema btw.

Oh I feel for you. There is something not right. The problem is - it's hard to pinpoint the issue.

Have you spoken to the HV or the Dr? I would, and I'd get a referral to a gastric consultant at the hospital and a dietitian to help your through the minefield of intolerance and allergies.

Keep a food/sleep/poo diary. It will help, you will spot something.

It does take weeks for the affects of food to leave the body completely but I would have thought 3 weeks of no dairy would be showing some signs of improvement. But are you cutting out all milk? I don't just mean cheese, milk, chocolate etc but milk is in lots of biscuits, cakes, puddings, some gravies, crisps, some breads etc. Labels have to be read. Though dairy-free alternatives are available and some are lovely.

Has anyone got food intolerance?

I'd also check out wheat/gluten or egg.

Try removing that from your diet ( one element at a time). It's not easy but don't give up hope - you will find out what it is. But it's horrible trying to find out what is causing it.

Do see your Dr.

Thank you for your reply. I will do a diary, good idea. How much does what I eat affect him? I had a curry made with veggie soya mince on Tuesday; could this be what upset him Wednesday night? I keep reading conflicting advice about that.

I have definitely cut out all dairy. A friend of a friend is a dietician and she kindly helped me with this. As it is on an unofficial basis though I don't feel I can keep phoning her, especially over Christmas! I feel a bit in limbo, would love to have dairy over Xmas but scared to undo the hard work. Don't want to deprive myself for nothing though!

From chatting to other parents who have kids with allergies/intolerances for some people it can just take a little bit to cause a reaction. Some can tolerant fairly decent amounts but that can change over time.

I think you need to see a Dr. The fact he cannot take something like baby rice needs to be looked into. It could something not relating to an intolerance/allergy.

Would you consider seeing a cranial osteopath who deal with babies as well as seeing the Dr? I did for our son and it did help with other stuff that was going on with him at the time. It's just a thought.

Sorry, meant to say I did see the gp (who looked very blank about the whole thing!) and he agreed to refer us to a paed at the local hospital. May be a bit of a wait though. Hv have been worse than useless, sadly.

I agree about the inability to tolerate any solids, though the dietician wasn't too worried; said he may just have an immature gut. She (I think) would like me to continue gradually weaning but I don't feel right about it, not to mention the intolerable nights it seems to bring!

Re. Cranial osteopath, yes I would consider it. Nearly did it many times in the early days but just was never able to prioritise it financially, bearing in mind it may not work. How do I find one? I saw an excellent chiro for spd in pg who also does this but charges a lot (£75 for first consult then £35 for subsequent (10 minute!) treatments after that!). I'd try anything now but prefer it to be a bit more affordable. I am south coast btw

I think our initial visit with the cranial osteopath was £45 and then it's been £35 since. We are in Yorkshire. It's expensive but for my youngest it was worth it. We did 5 sessions now we just go once every 6 months.

I have to phone our Osteopath tomorrow anyway, I will ask his receptionist the best way to find a tried and trusted one.

The British Osteopathic Association www.osteopathy.org/ might be worth a look. My ex-BIL was an osteopath and I seem to recall him recommending this site.

Phone them up and ask to talk to the osteopath before you make an appointment. Give a brief history and ask if they can help or recommend someone who specialises in this area. A good one will be honest with you and will spend some time on the phone talking to you. You'll know after a few sessions ( the most 4) if to continue.

Oh I forgot to say, phone the Dr's surgery and ask the receptionist about the referral letter. When it was sent, to which dept and which consultant. Then phone the hospital up and get put through to the department. Ask them where you are on the waiting list and that you'll take cancellations.

You'd be amazed how many referral letters go AWOL. Ours did, thankfully the secretary at the hospital turned out to be angel and got us a cancellation within days of us finding out we were back to square one in the waiting queue due to the missing letter.

And another thing ( bored yet?) I think you leave the solids for a few weeks if it is causing him so much horrible upset. It cannot be doing him much good with his digestive system if he's in so much pain. I don't think it will hurt him to leave it a little while until you have seen a consultant.

a percentage of people who are cows milk protein intolerant are also intolerant of soya too. so if that is in your diet then he may be reacting to that too. you can have almond milk or rice milk instead they are not so allergenic (make sure fortified with calcium to keep up for needs).
however, if the colief helps it may be that he is lactose intolerant although that is not very common in babies (more in adults). cows milk protein is much more common.
how is he feeding? does he take a full feed happily or does he get upset during/immediately after feed?
i really feel for you, as my baby had silent reflux until i got it sorted at about 4-5 months and that was long enough.

Hi, just resurrecting this thread. pancake thanks for your advice, I did chase up referral and it had been lost so been faxed through from GPs again!

I am now back on normal diet and trying to give colief before every feed. It doesn't seem to be helping any more . I am also giving a tiny bit of baby rice made with ebm every morning, at dietician's request. It is giving him diahrea (sp) and even more sleeplessness at night.

So that's where we are now. My main question I wondered if anyone could help with is this: can food allergies cause cold-like symptoms? Ds seems to always have a nasty cold as well as discharge from his eyes. Gp/hv not worried and the symptoms themselves are not serious, it's the frequency. I don't remember ds1 being ill so much. Thanks for any thoughts.

Oh, we have cats and dogs too and don't Hoover/dust nearly enough could they be the cause? Are children we dietary allergies more prone to environmental allergies? Just looked at Babycentre allergies page and it describes his symptoms perfectly (sorry no link, on phone).

We = with

Your story sounds so similar to mine, and i definitely feel for you.
My DS had awful silent reflux, wind etc and after months of battling doctors and health visitors (told it was colic or normal etc) he was finally diagnosed as lactose intollerant, unfortunately by this stage he had already developed bad sleep habits as i had to rock him to sleep (and back to sleep every 2 hours!) most nights as he was so uncomfy and often in pain.
I have found that my DS also has a soya allergy, which one doctor has told me is fairly common in babies with lactose intollerance (?) so i completely cut out all dairy (other than the lacto free range) and soya, and he is doing so much better, he can even tolerate small amounts of dairy now.
My DS had a lot of trouble digesting solidsat the time too, and it was thought that this could have been because his digestive system was too delicate as it had been trying to cope with the lactose. But things get better, and he generally eats like a horse, and sleeps for stretches of 6 hours + now.

Hi, thanks so much for your reply. I suspect lactose intolerance and also possibly soya as, when I cut out dairy I pretty much replaced it all with soya. His eczema cleared up on no dairy but sleep problems worsened (due to soya in my diet I suspect).

How old is your ds now? I feel I should stop with the rice but dietician seems to think I should plough on through. I feel so bad for the little chap, his life is tough

Really interested to read your experiences. How did you get to the bottom of it all? Glad it is better for you now.

My DS is 15 months now.
I got to the bottom of it by basically camping out at the doctors, arguing with them and demanding stool samples to be taken. But that took about 8 months from start to finish and i felt i was banging my head against a brick wall - i'm so glad i perservered though!
Whilst waiting for the diagnoses i tried colief (partial success as it eased the symptoms slightly) kept food diaries and initially replaced all dairy with soya on the advice of the doctor, but his symptoms got worse with the soya and he spent hours and hours screaming in pain. (they refused to perscribe dairy free formula untill he had been diagnosed, but wouldn't do anything to diagnose him!) i went back to the doctor and was told to keep him on the soya for 2 weeks anyway, but there was no way i was going to do that.
I ended up doing a lot of research myself and stopped giving him any foods with dairy in them (i swear he hated me for depriving him of his beloved fish fingers!) and replacing his formula with lactofree milk i bought from the supermarket (i also use their cream, cheese and yoghurts) After a few weeks his symtoms got so much better and after 6 weeks i gradually reintroduced certain foods (including the fishfingers!) and luckily my DS can tolerate small amounts of lactose if it is an ingredient but i don't think he'd have been able to do this if i hadn't cut everything out for a few weeks.
A few weeks after this i got a letter telling me he was lactose intollerant and had an appointment with a dietician (who couldn't tell me anything i hadn't taught myself at that point!)
Obviously i'm not a doctor/hv/dietician, but with regards to the rice, i know where you're coming from as i hated the thought of giving my ds anything that i thought was making him uncomfy or causing him pain. Perhaps try the rice made up with lacto free milk? its got the same amount of calcium as normal milk, and at least you know there is no lactose or soya.

Thanks for this. The dietician has suggested adding colief to the milk; that would be the same as using lacto free milk I am guessing? Anyway, not fed him today as need a break and some sleep at night!

Thanks for your information, sounds like you did brilliantly. It is hard as he is just 6 mths and ebf so to cut out anything from his diet needs to be via me! Thanks again, I will persevere.

Late to this sorry! But still might help.

DS3 was diagnosed with silent reflux at 4 weeks old and prescribed gaviscon.

I found that if he had fruit after 4pm, night times where hell, acid in fruit didnt help with the reflux.

DS3 has allergies. CMPI, egg, strawberrys and tomatoes (so far)

But the writhing, grunting and wriggling you describes is DS to a tee. We tried ranitidine and it made it worse for us so we went back to gaviscon.

He is one next week. We ran out of gaviscon about two weeks ago and boy did we know about it, I didnt rush out and get more as I was always told, once hes fully weaned, sitting/standing/walking it will get better. Which imo is a load of crapola in our case. He screamed and writhed and wriggled for 3 hours non stop. I went out to find a chemist at 9pm, once he had gaviscon he was fine :) He has two sachets in an 8oz bottle before bed now.

1 sachet in 6 oz bottles through the day.

He is on neocate. Little and often is better with reflux babies too :) HTH

Also late to this!

DS2 has major reflux (gaviscon, omeprazole and domperidone), CMPI and has had reactions to apples, pears, mango and now, it seems, wheat.

We're off for our follow up with the paed and dietician on Monday when I'm going to ask for allergy testing.

I would follow up on the reflux idea and ask to see a paed with gastro speciality.

Just come back to this, thanks for you comments. I have now been diary and soya free for about 3 weeks and seen much improvement. Should get an appointment to see the Paed in the next two weeks now. Will update when I have seen him/her. Thank you all

Glad you have seen an improvement... hope goes well with Paed. I know this mum who went through similar food intolerance experience with 3 babies... might help to see how she tackled it Mum tackles dairy intolerance head on

Don't know if it might help but if you want to read about my experiences with the same kind of thing, I am in the middle of creating a blog aimed at passing on stuff I've learned, but also in the hope that others will add stuff too. dairyfreebabyandme.blogspot.com/