Worried About Intolerance but Dr dismissive

[WelshOneEmma]

Just to give a quick summary, DS was born at 37 weeks. I was induced after my waters went. I breastfed for 7 weeks but we then introduced a bottle as he had oral thrush (which gave him an awful nappy rash) and despite treatment we were re-infecting each other. My milk dried up so he's been on formula since. He would get really gassing, scream lots, arching his back etc. He was born on the 9th percentile and went down to the 2nd. We would have a nightmare period between 6-9 pm every night where we just couldn't get him to settle. Infacol and gripe water did nothing.

We had started on Aptamil but then changed the formula to Hipp, changed to Dr Brown's bottles and then introduced Colief - what a change!! He was a happy baby, much less gassy and would settle well at nights. More recently he had started getting himself to sleep without needing to be rocked (as long as you caught him at the right point of tiredness. All in all, he went from a bit of a difficult baby to such a calm and happy baby. He had gone back to the 9th percentile and when we introduced these changes jumped to the 25th percentile and most recently the 50th (i think if he had been born on time he would have been closer to the 50th).

So we have been going through a bottle of colief a week. I have discussed it with GPs and HV (no-one told me you could get it on prescription ) and they have just mentioned the weaning off, as per instructions. Every time we have tried to reduce the dose down, the same problems flare up again. I have emailed colief who said full dose up to 6 months is fine - but what then?

He had shown interest in my daughters food (she was eating a rusk and he went nuts until he had his own bit, which he loved) so I tried him on some sweet potato with milk and we had a very unsettled night (was only a small amount to gauge if he is starting to get interested in food). Yesterday I gave him a small amount of baby porridge with his formula (but no colief) and again he was unsettled and last night was one of the worst we have had with him (although he did have his second Men B vaccination yesterday, was fine all day but had a temp of about 38.2 during the night).

I have mentioned my concerns to the GP but she was completely dismissive. So how do I go about this? See if he turns into a nightmare child and then see the GP? or a different one?

Thanks for reading this long post!

 

[_Meep_]

I hate GPs. I had a similar situation when I suspected my LO was reacting to something in my milk. The GP's response was 'I very much doubt it.' She then asked me if I had postnatal depression.

It wasn't that - it was more the fact that my baby completely refused to breastfeed and had done for months, but the GP ignored that part because she 'looked happy' and was a 'healthy weight' ... yes. Because I'd been dreamfeeding her every time she fell asleep and all through the night.

I went dairy and soya free for a while, but whatever it was, my LO just grew out of it and she never refuses a feed now, which is a relief.

Colief works by reducing the lactose content of the milk, so it seems to me that your baby isn't processing lactose very well just yet and it makes him gassy and uncomfortable. You could try Comfort Milk - it's a reduced-lactose formula so you don't need to use Colief as it basically acts in the same way inside a baby's body - should work out cheaper until your baby's ready to take regular milk.

If you try it and he still reacts to reduced-lactose formula then you may need to use a formula that isn't cow's milk based - if the GP won't help you with that, maybe a dietician might?

 

[WelshOneEmma]

I hate GPs. I had a similar situation when I suspected my LO was reacting to something in my milk. The GP's response was 'I very much doubt it.' She then asked me if I had postnatal depression.

It wasn't that - it was more the fact that my baby completely refused to breastfeed and had done for months, but the GP ignored that part because she 'looked happy' and was a 'healthy weight' ... yes. Because I'd been dreamfeeding her every time she fell asleep and all through the night.

I went dairy and soya free for a while, but whatever it was, my LO just grew out of it and she never refuses a feed now, which is a relief.

Colief works by reducing the lactose content of the milk, so it seems to me that your baby isn't processing lactose very well just yet and it makes him gassy and uncomfortable. You could try Comfort Milk - it's a reduced-lactose formula so you don't need to use Colief as it basically acts in the same way inside a baby's body - should work out cheaper until your baby's ready to take regular milk.

If you try it and he still reacts to reduced-lactose formula then you may need to use a formula that isn't cow's milk based - if the GP won't help you with that, maybe a dietician might?

I was wondering about changing the formula, but he's nearly 6 months so wasn't sure if I should leave it, but I suppose I dont want to be buying colief anymore. I wish I had realised that's what the comfort formula's did but again, no GP or HV said anything. My nephew was lactose intolerant up until the age of 2 but was a lot worse than Tal. I will look into dieticians - i take it I have to pay for that?

 

[_Meep_]

I hate GPs. I had a similar situation when I suspected my LO was reacting to something in my milk. The GP's response was 'I very much doubt it.' She then asked me if I had postnatal depression.

It wasn't that - it was more the fact that my baby completely refused to breastfeed and had done for months, but the GP ignored that part because she 'looked happy' and was a 'healthy weight' ... yes. Because I'd been dreamfeeding her every time she fell asleep and all through the night.

I went dairy and soya free for a while, but whatever it was, my LO just grew out of it and she never refuses a feed now, which is a relief.

Colief works by reducing the lactose content of the milk, so it seems to me that your baby isn't processing lactose very well just yet and it makes him gassy and uncomfortable. You could try Comfort Milk - it's a reduced-lactose formula so you don't need to use Colief as it basically acts in the same way inside a baby's body - should work out cheaper until your baby's ready to take regular milk.

If you try it and he still reacts to reduced-lactose formula then you may need to use a formula that isn't cow's milk based - if the GP won't help you with that, maybe a dietician might?

I was wondering about changing the formula, but he's nearly 6 months so wasn't sure if I should leave it, but I suppose I dont want to be buying colief anymore. I wish I had realised that's what the comfort formula's did but again, no GP or HV said anything. My nephew was lactose intolerant up until the age of 2 but was a lot worse than Tal. I will look into dieticians - i take it I have to pay for that?

Yes I think so, but it's worth being sure for the comfort of your LO I guess! It's such a shame your GP is being so crap and refusing to listen. I don't know if GPs ever refer babies to dieticians etc. but it doesn't sound like yours would be very forthcoming with that anyway. They really should have suggested Comfort Milk if you mentioned that Colief was helping his symptoms!!! I think they are just reluctant to suggest anything that they may be coerced into prescribing (you CAN get specialist milks and Colief, Infacol, etc. free on prescription but as I understand it, they try to avoid doing this unless the baby is seriously ill, FTT and so on, because of the cost).

Unbelievable!

 

[snickersbar]

We had similar issues and similar push back from gp, took a lot of visits and arguments from us.

You could look at trying this service, you may be able to get colief for free without gp prescription https://m.boots.com/h5/cat_hub?unCo...-more-information/Minor-ailments-service-NHS/.

They're still on formula until they're a year so 6 months is a long time with a miserable baby (i had 4 months of misery).

 

[snickersbar]

Also, if no luck with gp for referral for further testing/help try hv. Ours referred us when gp wouldn't.

 

[Button#]

Same thing happened with my friends baby and it turned out to be a milk intolerance and he was prescribed a specialist formula.

 

[MrsT&Ben]

Have you tried lactose free formula? You can buy it off the shelf in boots. My daughter has been on it since about 3 weeks old but prior to this she had all the symptoms you mentioned. My son had it and so did I when I was a baby. Don't let the gp fob you off. Unless they are specialists in babies they have no clue. I hear of so many parents fobbed off with colic and I just don't believe it's true!

 

[Mrsb3]

i think most people are in the same situation with regards to gp's unless you find a good, caring, empathetic one which are very few. I think you'll find around 6 months colic will be a thing of the past and you will be on the your next problem (for me it was exema ughh!) but all my kids had colic until they were about 4 months and I too used the coilef and paid for it myself. Ebay was good. Don't worry too much about what to use after 6 months because like I said it is likely to be gone by then as they will be sitting up. A bit of advice- carry your son on your hip as much as possible they get their wind up in thir own just walking around with them like that. Also non of mine could tolerate dairy until 8 months.

 

[Button#]

Just noticed you said about a dietician, they are free. They do appointments at the GP and at the childrens centre in my area. Also my friend was told by her paediatrician that she was referred to that if it was colic it should stop at 3 months. If it's still bad after that it's most likely reflux or cmpi. I would press for a referral.

 

[Mrsb3]

Gaviscon is fear gor reflux. You can get a 6 months supply on eBay for under a tenner!

 

[WelshOneEmma]

Thanks all. He's a few weeks off 6 months and still showing symptoms. For example yesterday we just stuck with formula and colief, no baby food (not that he was having lots) so therefore no dairy or formula with no colief and he slept through again last night! He was a lot happier too and we finally had smiles off him again. I will buy one of the comfort formulas and see if that helps (although I currently have 3 weeks supply of Hipp and Colief).

I dont mind paying for a dietician, just dont want to pay and then find out I can get it via the GP. I have also mentioned the colief issues with the HV and they never said anything either, so not holding out much hope for them. Think I'm being dismissed as a panicky mum!

We will soon find out! (for the record I think if it is an intolerance its one that will likely go over time/age like my nephew's did, he's such a lovely baby now he doesnt get gassy and is good at bringing his wind up).

 

[Miwi]

Babies absolutely can be referred to a dietician, both my girls are under the care of s dietician (multiple allergies- nightmare) I would ask to be referred, I don't think the gp can refuse if you have concerns, they might just not offer. Allergies and intolerances are so terribly difficult to diagnose sometimes because there's so many different factors. I would imagine though tbh that a regular formula for a baby with CMPA would be a serious and quite obvious reaction. My oldest has CMPA and when the gp dismissed it as an option as a baby she gave us some comfort milk, after one bottle it was like something from the exercist. Horrific. Is it possible he may have reflux? Silent reflux maybe? There is also a website now that tells the symptoms for CMPA, I think it's an nhs page! Sorry I'm all over the place with this reply - typing fast lol x

 

[WelshOneEmma]

Babies absolutely can be referred to a dietician, both my girls are under the care of s dietician (multiple allergies- nightmare) I would ask to be referred, I don't think the gp can refuse if you have concerns, they might just not offer. Allergies and intolerances are so terribly difficult to diagnose sometimes because there's so many different factors. I would imagine though tbh that a regular formula for a baby with CMPA would be a serious and quite obvious reaction. My oldest has CMPA and when the gp dismissed it as an option as a baby she gave us some comfort milk, after one bottle it was like something from the exercist. Horrific. Is it possible he may have reflux? Silent reflux maybe? There is also a website now that tells the symptoms for CMPA, I think it's an nhs page! Sorry I'm all over the place with this reply - typing fast lol x

Its definitely not CMPA / allergy. Like I said, he was very gassy and we would have a nightmare period every day, same time everyday. As soon as we introduced Colief he was a different baby but every time we try to reduce the dosage down he gets gassy as well. He's also just been diagnosed with Eczema (which really flared up the last few days but is calming down again now).

I will buy a comfort formula today and see how we go just using that and if he's ok will go back to the GP to discuss the next stage.

 

[Miwi]

Ah, sorry I thought you were worried about an intolerance still, I should have read further! Fighters crossed the comfort milk helps and you finally get some answers, it definitely doesn't sound easy for either of you whatever it is! X

 

[Mrsb3]

Can I reccomend waterwipes if you LO has exema because they were a god send to my lo! After eating I would wipe her hands and face with normal unfragranced wipes but she would still flare up it was awful!! Now she is turning 1 her exams is loads better just a few patches on knuckles, ankle and elbow but nothing major. If you need any advice on products just let me know I have tried them all!!! Was in exema hell for months

 

[WelshOneEmma]

Ah, sorry I thought you were worried about an intolerance still, I should have read further! Fighters crossed the comfort milk helps and you finally get some answers, it definitely doesn't sound easy for either of you whatever it is! X

Maybe I am misreading what you wrote - I dont think its an allergy (which is what I think CMPA is) but a more longer term intolerance? My nephew was very intolerant up to about 2, and was a lot worse than Tal, but he can now have dairy. For the past 2 days he has been solidly on formula and he has been a lot better. We introduced 2 bottles of LF formula yesterday and he again slept through, has been his normal happy self and has just had a 2.5 hour nap. I think I will continue on with that for 2 days, then try introducing the Hipp (minus colief) and see what happens. Then i have some info for the GP.

Can I reccomend waterwipes if you LO has exema because they were a god send to my lo! After eating I would wipe her hands and face with normal unfragranced wipes but she would still flare up it was awful!! Now she is turning 1 her exams is loads better just a few patches on knuckles, ankle and elbow but nothing major. If you need any advice on products just let me know I have tried them all!!! Was in exema hell for months

We use Jackson Reece wipes, always have. Someone gave us some named ones once and hubby used one to wipe her face - rash was instant! Never again!! To be honest I'm surprised she said it was eczema as i thought it was a change in washing powder (we had stayed with my mum and she washed his clothes in different stuff to what I used).

Thank you all. Will let you know what happens!