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15/05/2013 at 09:02
I have just made P an appointment to see our GP as her symptoms seem to me to be pointing more and more towards milk allergy (she is mixed fed). She has:
A rash all over her forehead and scalp that started as being red and angry with hundreds of raised pus filled whiteheads and is now a dry scaly rash.
Lots of sneezing and mucous.
Fussiness after feeding, colic like symptoms at night.
Not being able to settle at night after a feed, fidgeting like she is uncomfortable, grunting, squeaking, shuffling around, waking suddenly after sleeping for 5 mins or so.
Wheezy sounding chest.
I think she has an upset tummy although its hard to tell with newborns but her poo is literally yellow liquid as runny as water. She has a sore bottom where she goes so often
Do these symptoms sound like milk sllergy?
15/05/2013 at 09:28
Henry had all of those but equally they could be separate baby ailments. Just seems a coincidence to have them all together. I stopped expressing at 6 weeks to try lactose free, different brands, pepti and nothing helped until we got put on neocate. It started as soon as we got him home at 3weeks but only noticed odd little things. He fed fine to start but things steadily got worse and unbearable till he was in agony with every feed. Then inbetween, until all his awake time he was in pain. He's so much better now
15/05/2013 at 09:37
I've just tried to see of I could find any pics of Matilda when her face was really bad. Alas, seems they were memories I didn't want to have!
The yellow poo would the the most significant thing for me there, and something the paediatrician agreed was a massive symptom of a dairy allergy.
Can you cut out dairy from your diet and BF a bit more than FF for a bit and see if it makes any difference?
Hope the GP can help you.
15/05/2013 at 11:36
Thanks ladies. They think it might be reflux so i need to try her on gaviscon for 10 days to see if anything changes. If it doesnt they will look into it further but seemed very dismissive even after the list of symptoms. We shall see what happens.....
15/05/2013 at 13:21
*bangs head on wall* this is the route we went down. Gaviscon made him so painfully constipated we had to stop. What did they say about all other symptoms though? It does sound like reflux as was Henry's but with the other symptoms, which aren't reflux related, they need to consider allergy. Most cases of reflux are actually from something underlying, milk allergy being the main one. If it is that, treating the reflux won't stop the problem iyswim. The best reflux meds didnt touch henry as there was an underlying cause. If the Gaviscon doesn't work or she gets worse go back and pester them. Alot of drs really are dismissive, we were left for weeks and weeks with Henry in agonising pain, many trips to a and e and a change of GPS. But you know your baby x
15/05/2013 at 15:10
Does it ruin the family? My SiL has 2 girls with milk allergy and my hubby's aunt has it too and possibly one of her daughters? Hubby fine though, but he's not a milky person iykwim.
Lol,I meant RUN in the family, not ruin. Bloody autocorrect!
15/05/2013 at 18:53
No doesnt run in the family. It is frustrating MissusS but i will give the Gaviscon a go and see what happens. Another symptom appeared today - really sore on her bottom and not just on the cheeks iyswim? That was another sign listed on the site i found.
15/05/2013 at 20:58
If she's got reflux (even as a milk allergy result) the acid can make their poor bums sore. Is her poo mucousy? Henry's didn't start until about 7/8 weeks. I think the longer they're exposed the more it builds up, hence it only getting worse. Least you're on the ball now so you know what you're looking for and talking about
15/05/2013 at 21:16
Yes it did seem a bit mucousy and its non stop. Literally she filled her nappy, she did more during me changing her, got the new nappy on and she had gone again before we got downstairs. Just yellow water. No solid there at all.
15/05/2013 at 21:37
Missus S talks sense, it's amazing how much you learn about milk allergies once your child has one!
N was on Gaviscon but it also made him horrendously constipated. After a long old fight we got ranitidine instead and his eczema started at 4 months. It started with a sore facial rash which quickly spread over his entire body. That's when we were referred to a dietician and started different milks, Nutramigen, Aptimal Pepti and eventually Neocate.
If it is an allergy, testing isn't very reliable. N's tests came back negative but his consultant says he has an allergy as he's so symptomatic. If she does turn out to have an allergy then get a referral to a consultant, do not let your GP play around with it.
Reflux and eczema are related to cows milk protein allergies. Soya and goats milk aren't a recommended alternative (as you can be allergic to those too). Are you going to go dairy and soya free as a trial?
15/05/2013 at 22:53
It took ages to get someone to listen to me about S and when we did finally get to the hospital when she was 3 months, the consultant said she was so classically milk protein intolerant that he wasn't even going to bother subjecting her to any more tests.
Long story cut short.
Exclusively BF for 4 weeks, but due to lack of weight gain HV made me top her up with formula against our wishes. The lack of weight gain, explosive, watery poo and fussy feeding were the only symptoms at this stage. She was also a noisy baby, grunting etc. but didn't think anything of it.
The introduction of formula made her very ill. Rash on the face, projective vomiting, screaming in pain when she was usually a happy, settled baby, not sleeping etc. She did, however, put on a lot of weight very quickly.
We took her off the formula and topped her up with expressed milk on the advice of a BF consultant (S also had tongue tie so the lack of weight gain was blamed on poor feeding to begin with). Most symptoms stopped, but she lost weight. HV made me put her back on formula. Symptoms returned. Took her off the formula again, most symptoms stopped etc. Did some research of my own and thought she may be lactose intolerant. HV ignored me and said I'd not given the formula long enough. Bypassed HV, went straight to GP who agreed with me and passed us on to the hospital, told me it was up to me if I gave formula. S then wouldn't BF at all and was constantly fussing. I expressed as much as poss, but she was obviously losing more weight. Went to see a different GP and asked to be given prescription formula to top her up. She agreed to, but couldn't until I'd been to the hospital - the appointment was 2 months away at this point.
I ended up cutting dairy out of my diet and expressing and topping up with SMA Wysoy as this was the only milk I could but off the shelf and the GP couldn't advise me further.
This seemed to work, but I did struggle with the expressing and the wysoy wasn't agreeing with her massively.
Finally got to the hospital. Was told I shouldn't have given her soya milk under 6 months, but they agreed that I'd no other option and was finally prescribed nutramigen. Luckily S would drink it (many babies won't as it's so vile). I eventually gave up expressing when she was 4 months and moved her completely onto the nutramigen.
We're currently weaning and it's very difficult at the moment as it looks like she is soya intolerant too, as every time I give her something with soya in, she's sick.
I'd never heard of a milk allergy before, but know of a lot of babies that have been diagnosed recently. Don't be fobbed off by the GP and insist on being referred to a consultant. Virtually every milk intolerant baby I've heard offs GP blamed reflux to begin with. There needs to be more training on this area as too many babies are suffering due to the lack of understanding of HV and Gps. I hope your little one is sorted soon. x
17/05/2013 at 05:28
Thanks so much for all your advice. I have decided i need to get tough and stand my ground so its back to the docs again this morning when they open. Gaviscon is doing nothing. Just had another bad night. A typical night is going something like this:
Fed P at 9.30, bf first then formula top up. Half way through formula she will choke - this happens almost every time. She nods off after winding and we take her upstairs. She sleeps soundly for 5-10 mins then the wheezing starts. She gets fidgety and if you watch her its when she starts to wheeze that her arms and legs are kicking about like she is uncomfortable like her chest is tight. Then she starts sneezing. Then she starts to cry. I comfort her till she goes back to sleep but the grunting andvwheezing continue on and off for quite a lot longer.
I have taken a video of her just now to show the doctor. If they wont listen to me my next step is to cut dairy from my diet and try to exclusively bf although it means P wil want to feed 24/7 as i just dont produce enough milk but i cant bear seeing her like this any more its breaking my heart to see my 3 week old daughter struggle to breathe properly and meanwhile i am being made to feel like a paranoid mother but i KNOW somethings not right.
My other worry is that i am so tired from sitting up with her that when i do sleep i sleep through all the grunting/wheezing which really scares me. I am sick of crying over this. I want to enjoy these newborn days as its the last time i will do it but i am constantly panicking about her breathing and whether this is suddenly going to get worse to the point it stops.
I will let you know how i get on.
Sorry to keep going on. This is the only place i feel people actually listen!
17/05/2013 at 07:49
Oh MM it's heartbreaking having to 'put up' with it. The wheezing is a huge symptom of an allergy and Henry barely does it anymore so you're right to push that point to the doctor. What you need is a prescription of milk to try. Would mean if BF to cut out dairy as otherwise the formula is redundant. Be warned it can take a while anyway, so the sooner you get to try the better. We tried (well I bought it as my dr wouldn't prescribe it) aptamil pepti where the milk protein is broken down so the body shouldn't recognise it. As its still there if the tummy is very sensitive it won't work for some. Didn't for us. So neocate given afte a trip to A&E. there's no cows milk in it whatsoever. If the to wont listen see another. Demand a referral to a paediatrician. Go to A&E if you have to. We'd have been waiting months otherwise
17/05/2013 at 14:15
Hugs. We had a terrible time getting S diagnosed. I agree with everything Missus S says. There are a number of different formulas they can prescribe; Missus S mentions 2 of them. The others are nutramigen lupil 1 & 2 and Nutramigen AA. The lupil is the most common for them to prescribe as, quite simply, it's the cheapest and you'd have to prove baby won't drink the lupil before they'll give you the AA. We were lucky in that S drank the lupil with few problems, but I did have to mix it with her regular formula for a few days before she would drink it on its own.
Something you could do, if you don't get anywhere with the GP or have to wait for a consultant's appointment, is the same as I did. Cut out the dairy from your diet and as much as is comfortable and buy a suitable formula to top up with and see if it helps. If it does, you have more evidence to present them with to get the formula on prescription and, if you then wish, you can move entirely onto formula when properly diagnosed.
I do hope you get some answers. Be firm and don't be fobbed off! x
21/05/2013 at 10:39
Went to see the health visitor today just to get another opinion. She also doesnt think its milk allergy but a mixture of silent reflux and intolerance to cows milk. She has suggested swapping to aptamil comfort so we will see how that goes. The rash she said is baby acne/dermatitis and has said to use olive oil or epaderm as its sooooo dry.
21/05/2013 at 12:23
An intolerance to cow's milk has many of the same symptoms as a milk allergy, the difference being that the intolerance is generally grown out of and it is a reaction to how the proteins are formed in cow's milk. Aptamil comfort will still contain the cow's milk proteins, so if she is intolerant it won't help in the slightest. I actually can't believe that in one breath she's saying she probably does have a cow's milk intolerance and in the other advising a product made from cow's milk! (Bangs head on wall.)
By all means give the comfort milk a try, but I'd be very surprised if it helps. I really think you need to take this to the experts if she's no better by next week.
21/05/2013 at 13:13
What LWO said.
I thought it strange that you'd put a baby who you suspect a milk intolerance on Aptamil comfort, which contains milk protein! It contains less lactose, but a lactose intolerance is different from a milk intolerance. Also, its like gaviscon in that it thickens in the stomach, which is why it's meant to help reflux. But if you've got a milk allergy, it'll do bugger all.
ETA: I appreciate that they have to try things first. But milk such as Nutramigen, Neocate etc is £30 a tub, which is why they're so reluctant to prescribe it. It's always down to cost.
21/05/2013 at 13:19
I am a bit exasperated by it to be honest LWO. If i give P formula in the day she is fine. No wheezing, no tummy ache, no trapped wind. But i give it to her before bed and last night she fussed, grunted, squeaked, cried in pain and farted for 2 hours!!
On top of all that i am now having issues feeding her at all at night. She wont latch onto me properly or keeps coming off (infacol isnt helping as its so slippery) and she will take about 1oz from a bottle if i am lucky then wakes soon afterwards for more. I am running out of ideas! She is fine in the day - latches on lovely, feeds for 25 mins each side, occasionally has a formula top up then sleeps soundly. No shuffling, grunting, wheezing etc. Everyone keeps saying if its a milk allergy she would be like it all the time....
I think the hv was thinking the comfort milk might be a bit gentler on her tummy and at least help with the trapped wind and upset tummy. Its worth a go i guess and as you say if things dont improve i will be back with the GP.
21/05/2013 at 21:22
With us, it wasn't a reaction immediately after a bottle, more an overall thing. Have you cut dairy out of your diet at all? Once S started on formula she also refused to latch at all and ended up with me expressing for months.
Just an idea, but as you're feeding her at night could it be that she's having less of a 'milk' boost during the night but then having the formula in the day makes it build up so she's uncomfortable later on. Just a feeling I have, no scientific evidence to back that up!
When I was BF S the only symptoms she had was lack of weight gain and chronic diarrhoea; it was the formula that made her symptoms worse. Probably because the protein would be more concentrated in the formula. You do have some overall symptoms in that she has a rash, which I would say could well be a symptom of milk intolerance as S had exactly the same. It started with little spots, that I thought were baby acne, but then turned into a rash and didn't go until I stopped the formula.
Good luck with the comfort milk. x
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