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It's been a while!... (but got a diagnosis at last!)
Hi girls,
How are you all doing? I haven't been on here in absolutely ages due to just not having the time (or energy!) However, fingers crossed that should change soon because we have FINALLY got a diagnosis of what's wrong with Ollie.... He's allergic to cows milk! Can you believe that it took them 5 bloody months to diagnose that? I am so angry (although also relieved!) and feel so so guilty that he has been in pain all this time![:\](https://forum.madeformums.com/resources/emoji/confused.png ":\")
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Anyway, I just wanted to say Hi and looking at the front page, I have got some serious catching up to do! xxx
How are you all doing? I haven't been on here in absolutely ages due to just not having the time (or energy!) However, fingers crossed that should change soon because we have FINALLY got a diagnosis of what's wrong with Ollie.... He's allergic to cows milk! Can you believe that it took them 5 bloody months to diagnose that? I am so angry (although also relieved!) and feel so so guilty that he has been in pain all this time
(Anyway, I just wanted to say Hi and looking at the front page, I have got some serious catching up to do! xxx
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Replies
A big 'Hi' back
Hope he starts to sleep better soon too.
Sx
Sorry for gatecrashing from Born in Nov but Im having a nightmare with my baby, now 4 months and I think she might have a milk problem. Shes been in pain since week 2 , she had all the colic stuff, diagnosed by Paed for reflux a month ago but she still in pain after every feed and at night cant sleep longer than 2 hrs before thrashing through the night with wind.
We think she might be allergic to milk, (been on colief for months so dont think its lactose) her wind makes her scream several times a day and nothings changed with 6 weeks of comfort milk, 4 weeks gaviscon/ranitidine for reflux.
Can I ask what they did to get the diagnosis and how your baby was. I have a follow up appointment with Paed on Tue and Im desperate for help finding it very hard to cope now 4 months down the road.
Thanks Inka xxx
xx
Inca- It definitely sounds like your bub has got an intolerance somewhere!! There wasn't really any test they could do for a cows milk allergy because basically, he has done his own tests (if that makes sense?) and the results are that he's allergic. What I mean is, the dietician told us that there are 3 possible reactions he could have to cows milk 1) reflux 2) very painful belly and 3) severe ezcema... my lucky baby had all 3!!!!
At first they put him on a milk called Nutramigen but apparently that still contains some sort of protein that can mimic cows milk protein (or something like that!!) and he was still reacting badly to that (having explosive green nappies and feeding literally non-stop... if I didn't have a bottle ready 5 minutes after he finished one all hell would break lose!)
He is now on a milk called Neocate and fingers crossed it does seem to have settled him. It is so so so worth you getting angry and irate with your doctor/ paediatrician because as you can see, they didn't pay any attention to us till Ollie lost a staggering 10 oz in one week!!! (that's a heck of a lot of weight to lose for one tiny baby!) I was on the phone to the doctor and health visitors every single day because unfortunately, she who shouts loudest etc etc!!..
Good luck hun and I really hope you get it sorted soon because believe me, I can truly understand how you feel and how bloody frustrating it is to see your baby in pain and discomfort day in day out
Let us know how you get on xxx
We are also on Neocate now. We started on Pepti-Junior but it made little difference. We were diagnosed before the boys started losing weight (thankfully) but they stopped putting as much weight on. Luckily, we have an EXCELLENT paed who has been amazing (I dont usually praise the NHS!)
Its funny reading your 3 'symptoms'. I was never told that but my boys also have all 3! As well as that, the explosive nappies were AWFUL! And they would both scream for milk after 1.5 - 2 hours (I obviously didnt get as far problem wise as you). They would scream out in pain and were unable to sleep.
I know you had similar problems as I remember talking to you, but then hadnt seen you on here for ages. Im so glad its sorted. The boys have been on Neocate for 3 weeks now and things are improving. (theyre also on Gaviscon as the silent reflux is still apparant at the moment)
Problem is, Alfie's horrific excema hasnt improved. His face is often cracked and bleeding and he is constantly rubbing it as if to itch it. I dont know what to do. Epaderm and Diprobase did nothing but make him cry out as I believe they hurt when put on cracked skin so im stuck. I have another appointment with the paed on 15th April and she has said that if it doesnt improve she is going to refer me to a dermatologist. Its so sad to see him in pain and I dont know what to do. Have they given you anything for Ollie's excema? Is it working?
Gemma, Ryan and Alfie 22 + 3
On a serious note, pleased you're back chick, but even happier things finally seemed to have turned a corner for the little fella phew! Hope things now really improve x
Sorry for the late reply- who knew these babies would take up so much of my Babyexpert time?! The days of being sat on here all day are long gone! (crikey I miss those days ha ha!)
Anyway- how funny that your boys are the same as Ollie! (not funny haha I mean!) I know when I was going through it all it truly felt like I was the only person in the world with a 'poorly' baby. I felt like I had to explain about him all the time so that people wouldn't judge me or him- especially when his face was at it's worst, it would break my heart to think that he just wants to touch everybody and everything but that some people may think of him as being an 'icky' baby.... if you see what I mean?!
Your poor little Alfie with his sore face, I really feel for you. We too have tried both those creams with abslutely no effect. We also tried Oilatum which just made Ollie scream as soon as it touched his skin so I defintely don't recommend that! We're now using a cream called Dermol literally as often as I can slap it on his face and that combined with anti-biotics (because it all got infected) and using hydro-cortisone cream twice daily seems to have got a hold on the problem.... although watch this space!!
Have you tried lavender oil? I know it's not something a doctor would ever recommend but I started using a mix of sweet almond oil as a base with a couple of drops of lavender in it and it seemed to be taking effect! (plus, it's all completely natural so a way better long term solution!) I told the doctor that I had started to use that before he scratched his face and it got infected and she was fine with it... ultimately, whatever works is always going to get a thumbs up I guess!
Gem- if you ever want to chat just give me a yell because I can seriously say that the past 6 months have been absolute and utter hell and when I told my husband that you had been through it all too.... with 2 babies we both just wanted to give you a big old cuddle!! xxx
[Modified by: Bert666 on March 24, 2010 06:17 PM]
However, our nappies are back to normal, they are MUCH happier (except int he evening when Alfie's skin gets really bad) and they are enjoying bottles again. I shudder when I think back to trying to force milk into them.
It took so so long to get somewhere, which makes me so sad. But, some have taken much longer and for that im grateful that im not a pushover!
Alfie's head is infected at the moment and has scabbed up majorly. His face is very sore and bleeds, as do his hands. It makes me cry to watch him.
Thank you for replying. Sometimes it really is nice to know that there is someone in the world who knows what this is like (and 2 is no different to 1 really - its still as heartwrenching, and Ryan is nowhere near as bad as Alfie).
I may try Lavender Oil, although ill wait till the cream has helped the cracks to heal. Dont want to be using steroid cream for too long.
Gemma xxx
Lots of love and hugs
Rachel and Charlie xx
Ooh, I tell you- I get so so mad with comments like that! The bloody doctor has absolutely no idea what you went through with trying to BF 2 babies. I remember reading on here about your heart wrenching decision to stop BF'ing and I could sympathise completely because it truly is a tough decision but I know now that my milk was making Ollie ill and your stupid doctor should realise that before opening his big stupid idiotic mouth!!!
Rant over! Hope you and the boys are okay? How's Alfies skin now? Has Ryan had a break out too? Ollies having a flare up at the moment and I think it's from banana... very random I know but it seems to make all the skin round his mouth get a hives like rash- poor little bubba!xxx
(ps- Thanks Rach! How's little Charlie doing? Your piccys on Facebook of him are just adorable!xxx)
My GP is obsessed with BF! He has twins and his wife bf them for 6 months so I am obviously a bad mum! The first time he said it was when we first went with the problems we were having (im dairy intollerant so dont eat much so thats why they didnt suffer badly, although they did a little, when I was bf). I hadnt long stopped, and yes, it was one of the hardest decisions I have ever made, and I came out crying. I was so upset that he would think I had given up for my benefit and not theirs. Im much stronger now, and know I made the right decision, so wasnt as phased this time but yes, it does beggar belief that he has no issue whith saying this to someone.
Alfie's skin has cleared up, almost, although only with the steroid cream. If im late putting it on, as I was this morning, it flares up! I havent thought about the solids making it worse. Will def keep an eye on that. Alfie has it round his mouth and ive just started on banana...might be a link??
Hows Ollie doing? Is he enjoying solids? The boys are dropping milk feeds like theres no tomorrow. They LOVE food!
Ryan has broken out in it, it just seems to have taken longer but it looks just as painful so have been putting the cream on that too. I have my follow up with the paed and dietician on 15th April. I get so much further with them!!