Hi, needing advice on major set back!

Our eldest was on omeprazole for quite a while. It wasn't majorly effective, I think it is merely supposed to reduce the amount of acid produced so won't stop your daughter refluxing but should make the reflux less painful.

Out of interest has your GP or paed talked about allergies/intolerances, as these could be the root cause of reflux and tackling this might help.. It certainly was our experience.

hi,

I really feel for you. reflux has taken us to hell and back over the last 4 years. does she cry for hours at night and wake frequently? we've experienced horrendous sleep deprivation too.

i have 2 sons who have had reflux and have other gut problems too. when they were little we were told they just had reflux but we now see a great gastroenterologist at great ormond street (took 4 years to see someone who could give us a diagnosis!!) who has explained to us that some children just have reflux but some have reflux because of an underlying condition - which is true of our children.

could your daughter have a milk allergy? food allergies can cause reflux and milk protein allergy is a common cause. if u are breast feeding, have you tried going dairy free to see if it affects her? i had to go dairy free till my youngest was stopped breastfeeding at 15months - it is really hard as you can't have many foods (you'll notice ready meals, fish in breadcrumbs etc often contain milk products or lactose) but it was worth it. his symptoms improved but didn't resolve completely - he is now soya, milk and egg free and takes a drug called 'ketotifen'. these things ahve helped but he still lives off milk.

if you decide to stop breastfeeding then get some good advice as we were told to put our eldest on normal formula which made his reflux and other symptoms much worse - both our sons are now on a dairy-free formula 'neocate' which has helped. you have to get this prescribed. it tastes foul so you may want to consider getting it soon and letting her have a small amount each day (if u want to carry on breastfeeding) as they say them are more likely to accept it when younger - we just gave my youngest a bottle a day to start with then when i had to stop breastfeeding (i was taking 2 strong antibioitics) he was used to the taste so accepted it for each feed.

our eldest is 4 and still has reflux but he's got more used to it bless him. i ddo worry about him when he says he has 'burning'.

if u decide to try going dairy-free you have to do it for 6 weeks before you can tell for sure if it's helping - as if her gut is inflammed it can take up to 6 weeks to resolve and improve. you can also ask your GP for a referral to a dietician if you decide to go dairy-free as they should advise you on calcium supplements and dietary requirements for you adn your daughter.

my only other thought is that my eldest got a lot worse at one point on omeprazole and needed a major dosage change - coud you ask to see your consultant sooner than your normal 3 monthly appointment? i tend to ask mine if i am concerned - i wish i'd been pushier in the past. if you get fobbed off then you coudl try asking more questions about allergies etc - we got fobbed off with our eldest until i went armed with info i'd found on internet.

if you want any further info on going dairy-free then please do shout - i can give u a quick list of foods that are/aren't ok. or if you want to find out more about medical problems that can cause reflux then i can send you some website links?

TAke care,
Kx

Yes, since writing the post I have been in touch with the consultant who as a first step wants me to try to go off the dairy. We will see how this goes!
Thanks for your support!

Yes, the nights are totally miserable, frequent waking and comfort feeding very often.
I spoke to my paeds consultant and he wants to try coming off the dairy for a 2 week period. If this doesn't work, he wants to stick a probe down her nose to measure gastric acid. The thought of this just makes me want to cry. Do you know if it's even worth doing? He claimed that if the meds she is on are not working then maybe it's not reflux. hmmm.
Anyway when they say dairy free do they mean cow's milk or goat's milk too? I am intolerant of wheat, so for me going dairy (cow's and goat's) is proving really difficult. For my daughter it's not so bad as she is such a poor eater that dropping yogurt or cheese from her "diet" will not make that much of a difference.
To top things now she is constipated. Isn't it just all great???
Anyway, we had a couple of more settled nights (woke 5 times in stead of 10) so I am a little more settled myself, but man, is this hard! It gets to points where I don't know how much more crying I can take - from both of us, it really is depressing.
Hey ho, things will improve eventually, i'm sure.
Thanks again. x

hi,

at 14 months my youngest was still feeding on and off all night too - it seemed to be a mixture of comfort and hunger as he didn't eat enough in the day (still doesn't!).

sounds a good idea to come off dairy but if you can bear it then maybe do it for a bit more than 2 weeks? we were told to do 1 week initially and it failed - but then great ormond street explained it can take weeks for the gut to heal and for you to see real improvements in children so you have to do it long enough to see if the symptoms improve. did your consultant prescribe you some calcium supplements? if not, some rice and oat milks are fortified and have extra calcium.

it sounds like it would be very tricky for you if you are intolerant to wheat. i really feel for you. also, you may want to reduce your soya intake too as dairy and soya allergies in children are related and we were told to keep my soya intake to a minimum as well as dairy.

yes you have to avoid goat/sheep and cows mik as they are all made up of a similar protein. if it helps - you can get a marg called 'pure sunflower spread' which is ok. i use oat milk (oatly is ok and they make a cream too). you can get an icecream called 'Ricecream'. there are alternatives out there but it takes lots of research - like i said i'd be happy to send u a list of stuff we use if it would help and save you time.

poor thing being constipated - we used lactulose for our 2 - has your doctor prescribed anything?

it is depressing - both of our sons used to cry day and night and sometimes i felt utter despair. i know everyone says it gets better and it's hard to believe but it does get easier - now my sons are 4 and 2 and we are finally seeing a gut expert things have improved massively. putting our sons on a restricted diet and and some medications has turned their lives - and ours - around. thank goodness as i really couldn't bear to see them in pain any longer.

i really hope your littlun improves when you go dairy-free - i found it a relief to know there was something i could do to help my sons. good luck and if you wanted any info on going dairy-free then just shout.

Kx

Hi Kitty, and many thanks again!
Re the dairy, yes I have planned to go off it for more than 2 weeks and see how it goes. Can't think of soya intolerance, as I got tonnes of Alpro and I will just see how she is on it. I will be really depressed if we can't do soya either!
The constipation is over - it just comes and goes and resolves itself. Not without a fair bit of pain mind you!
She is a little better, but I must say that I noticed a molar and an incisor yesterday - so I now wonder if this huge set back was teeth? could it be??
Mood wise she is back to normal - happy clappy and singy - and even took her first steps this weekend. So we are all happy about that.
Re the nights - from all night nursing we managed to separate forces - instead of co sleeping all together, hubby is now up stairs with her on her futon (she never liked her cot..!) and we managed to get the nursing down to twice only last night!
I'm calling it beginner's luck so we'll see if this is sustained.
Do you have any useful weblinks on dairy free for kids? all I can find is very American and would appreciate something that is based on brands we can buy here.
I really do appreciate your support!!
xxxx

hi

i totally understand about the soya thing. it really cuts what you can eat drastically and we found it really difficult. i think you are doing an amazing thing going dairy-free for your littlun. i so hope it works. i've put some info below. great ormond street have some fantastic leaflets that list the brands that are ok but i just checked and their leaflets aren't online. if you'd like a copy then maybe you could call their dietetics department (the main number is 02074059200) and ask them to send you the diary-free leaflet? hopefully they'd say yes.

there is a page on parentsown that gives info on where to buy dairy-free, soya-free and egg-free foods - some of it will apply for you hopefully. the link is:

http://www.parentsown.co.uk/page/milk-free-egg-free-and-soya-free-diet-w...

there is an online shop called goodness direct that sell dairy-free foods - link is :
http://www.goodnessdirect.co.uk/cgi-local/frameset/sect/ID-Dairy_Free.ht...

however, if you have a good health food shop nearby then you should be able to buy it locally and save on P&P.

I have listed a few tips for dairy-free - i hope they may be of some use and are just based on our tastes/experiences:

- Pure sunflower spread is good cause it's useful for baking as well as eating and doesn't contain other allergens like soya.

- we prefer oatly milk as it's a nice consistency and colour than rice milk and can be used for things like custard whereas the rice milk we used kept separating.

- oatly cream is good for puddings and cooking. it can be whisked unfortunately but thickens when in the fridge. it's not easy to get hold of but i get it from my local health food shop and a large tesco. you can get soya cream and custard too from large supermarkets.

- soya cheeses can be purchased at health food shops but we hated it when we tried it as it's very strong. it may be nicer now as we haven't tried it in years.

- snacks wise - we get dairy-free rich teabiscuits from tesco, dairy-free Nice and bourbon biscuits from morrisons.chocolate wise we eat some mint chocolates and health food chocolates - morrisons and health food shops do a dairy-free kids chocolate range (chocolate eggs, footballs, smarties). crisps wise, we either buy organix carrot crisps or walkers (ready salted). a lot of sweets are ok. cakes wise we make our own with the Pure. the frozen ready to roll pastry's are usually ok so you can make some puddings. most jellies are dairy-free but watch out for a few that aren't. some large supermarkets have a few dairy-free puddings in their 'free from' section. breadsticks are usually ok.

- watch out for dairy in these things (not all have it but some contain added milk proteins or lactose) - breadcrumbed items, sausages, some cooked meats such as bernard matthews, some frozen meat products. some tinned products, baby foods, crisps, pies, puddings. we often buy Birds Eye products as they don't seem to put as much dairy/soya in - we get fish fingers, fish cakes, chicken fingers and mince beef pies.

unfortunately, dairy is put in things you woudln't imagine and we've found that we have to check everything carefully. it's a real pain. we've been caught out a few times as ingredients change without us realising - we got caught out with green & blacks orange chocolate adding milk and a brand of ketchup added soya! so annoying!

eating out is a pain but i think you can get some dairy-free stuff at beefeaters, burger king, and carverys' (although they tend to spray their vegetables with oil or butter so we ring in advance and ask them not to spray ours) and i would think most other restaurants would be able to atleast give you salad!.

other websites you may wanna look at are:

http://www.milkmyths.org.uk/htbdf/
http://dairyfreecooking.about.com/od/dairyfreebasics/a/godairyfree.htm

someone in a forum helped me get started when we first went dairy/soya/egg free and it really helped as i didn't have to spend so much time looking at ingredietns in the supermarket - i hope i can pass that help on.

Goodluck and i'd love to hear how it goes and if it works!

K

Thank you so very much, I have read carefully and kept all the links you sent. I really do appreciate this - you are cutting out so much research time!!!
I will update once our trial 6 weeks is over. I dream that maybe it wasn't reflux all along and just a lactose intolerance. I know it's just a dream, but whatever happens, I think she is better off already.
Incidentally, when did you wean yours completely? we are having a real struggle with the night time at the moment, and if I have to keep off the dairy long term, that I will think about weaning sooner than the original plan (2 years). Hope that isn't too selfish...!
Cheers,
Gx

hi
i weaned my son completely off the breast at 15months because i had to take 2 strong antibiotics and it would have really upset his gut which was already inflammed. i was planning on giving it up by 18months anyway because i thought some of the night feeding was comfort which it must have been because as soon as i stopped breast feeding (had to do it very abruptly) he was fine and he let my husband give him some water from a bottle instead. After a few nights he stopped expecting the breast and just let me cuddle him up when he woke.

you are not selfish at all - quite the opposite - not many mums would breastfeed as long as you have and go dairy free themselves whilst feeding - it's not an easy thing to do!

you have to do what's right for you and your daughter and only you know what that is. the neocate formula my boys have is good nutrition and is dairy free so she wouldn't get any tummy ache and if u get a referral to a dietician they will be able to advise you on any supplements that may be needed.

good luck with it! i hope you don't miss dairy too much - i promise it gets easier after a few weeks.

Kx

hiya

I was wondering how the diet change went? did it help with the reflux?

hope you had a lovely christmas,

Kitty

The reality is such:
We stopped all medication shorty after I tried the new diet for 5 weeks and no change in sight. Stopping the meds was hard at first, but then gradually, she seemed to get better (spontanous coincidence? who knows!). She still suffers from wind, but I can cope with it, most of the time!
Now we have a different situation - I am in the first term of a new pregnancy and the milk supply is running out - and my daughter wants to feed all night long! We have been unseccessful with the gradual weaning, she just isn't coping with this at all. After some bleeding this week, I was at a scan today, and thank goodness, the baby is fine but I have been told to wean completely. This is not what I hoped for, but I guess it's for the greater good.
So reflux wise - we are more or less okay.
Nursing wise - we are on the way out.
It's a shame, I enjoyed nursing and it's obviously a huge part of my daughter's life, but I suppose it had to happen at some point as I couldn't see myself tandem feeding...
Thanks very much for thinking about us and thanks for all your support and advice!
Happy 2009 to you and yours,
Gxxx

Hiya
Congratulations on your pregnancy!! That's fab news! I'm really pleased the reflux is easing and that you don't need to stay on a restricted diet. Giving up breastfeeding is hard - i felt sad both times. Sometimes it's easier when you have a reason why u have to give it up (i had to cause of some medication i was taking when my youngest was 15months). I can't really offer any good advice on weaning her- we did it by my hubby offering bottles when he woke for the breast and he decided he didn't like the bottles enough to bother so he refused them till eventually he settled for a cuddle instead of feeding! Good luck with baby no.2 and i hope you have a good 2009.

Kx

Hiya

was just wondering how your pregnancy was going? How is the exclusion diet going?

I hope all is well,

Kitty