Hi, I notice most people here have babies with reflux. We were there but now have a 4 1/2 yr old still struggling with reflux.

I have had virtually no sleep since xmas because of family that don't listen when I say that my daughter can't eat certain things and they just give them to her anyway. I am being very careful with what she eats since so many reactions after the family xmas dinner but she doesn't really want to eat much at all and I desperately need some sleep. She was up all night with wheezing and coughing, she does have mild asthma which is often triggered by a bad reflux episode, and it took several hours for her ventolin to work and for us to be able to get some sleep! Normally it takes 3 - 5 days for her to get over something like this but this was her 5th night and it should be improving but it was worse than ever last night.

She is on a regular 20mg dose of losec but just wondering if there is anything else that might help her get over this quicker? Any help would be really appreciated.

Thanks.

Sorry to hear you are having troubles. I am afraid I have no wisdom to pass on and am in the same boat. 20mg Losec and 10 ml Ranitidine a day and I still get no sleep every night. Just a question, what are the foods your daughter reacts to? I am trying to find my own answers. Hope she gets better tonight for you.

Thanks but no another miserable night. It becomes a vicious circle, asthma cough triggers reflux or reflux triggers asthma and then just carries on, am treating both but getting no where right now.

The foods my daughter reacts to worst are sugar, soy and dairy, she can tolerate very small amounts of sugar especially natural sugars found in fruit but virtually no processed sugar, a very small amount of cheese but no other dairy and no soy at all. We also have to be careful of berries and of rich or strong foods like sauces or spicy foods but those things do tend to trigger reflux in most people.

The first nearly 4 years have been a nightmare with doctors not listening, not wanting to know and saying that we are just letting her be naughty, she's on 20 mg losec that is more than enough and we should be cutting that back she doesn't need it even though she is still in pain and screaming all night, won't help with sleep or behaviour, just offered me anti depressants because I am not coping with a very naughty child. Just before her 4th birthday something clicked and she has been very much improved until we hit xmas and this last set back which has been really hard.

Kindy have been an awesome help with her, more so than anyone else, they think she is wonderful and understand that when she has upsets that it is most likely because she feels sick etc so give her some quiet time by herself which keeps it to a minimum, I am a bit worried about how school is going to handle things when she starts though.

Good luck and I really hope you manage to find some answers. There are still things I am trying to find answers too as well!

I've had 3 with persistent reflux - finally resolved with surgery - eldest was 11 1/2, middle one 6 3/4 and the youngest just under 4 when they had their surgeries - so I know the pain of an older refluxer!

I did find that gaviscon can help settle a flare up a little and at least make them a bit more comfortable for sleep. That and propping them on a million pillows when things are bad.

Hope tonight's better!

Is she on a preventer for the asthma? Just asking as sometimes kids aren't - best if you can increase the preventer if going through a rough patch (although need ventolin too).

Has she been tested for intolerances/allergies?

Sorry, I don't really have any advice. Sounds like you need a new doctor.

LOL, yeah , do need a new doctor but being in a small rural area there's not much choice. They won't do allergy testing as they don't believe she has any actual allergies just intolerances that trigger the reflux.

We got desperate enough to brave the holiday clinic and very likely reflux from eating the wrong things triggered asthma but because she wasn't on a preventer the venolin helped but didn't bring it under control again and so kept coming back and made a vicious circle of asthma/reflux. She now has a preventer and although it could take up to a week to kick in properly we have already noticed a difference, we only got 2 wake ups with coughing last night a definate imporovement!!!

Eleanor, that would be really hard! I am so glad that most of my babies grew out of reflux before they were 2! Just had to be the last one that hasn't!!! LOL

Well, that is great htat she is on a preventer now. What did they put her on?

Some foods trigger my asthma - biggest one is sulphites in wine/dried fruits etc.

Hopefully the preventer will break the asthma/reflux cycle.
Is there a private paediatrician or allergy specialist that you can self-refer to (if you can afford it)?

It is definately helping, and no she doesn't have dried fruits or anything like that normally but did get some on xmas day. She is on flixotide.

There are no private paediatricians or allergy specialists round here, not that I can afford it anyway. The closest is auckland about 3 hrs away. Have cosidered allergy testing through a naturopath but have been told that those tests aren't really reliable so not sure.

I think they are quite expensive too Mumof7.

Great that the preventer is helping.

My eldest daughter has a friend who's stomach symptoms are affected by sugar. http://www.drrodneyford.com/extra/72-articles/477-fructose-can-make-you-sick.html This might be of use to you. Also this doctor does an eClinic for people who can't afford to see him or who live too far away.

Yeah those tests are probably expensive like everything, lol, was just suggested to me.

Thanks Roz, that looks really interesting. I know she can't take sugar very well at all, we got a really good response to neocate early on but symptoms slowly got worse again as time went on and improved againonce I was able to take her off formula completely and with trial of different things we found the problem with sugar and thought it must have been the sugar in neocate that was still affecting her.

Thankfully we have very little sugar in our house at all as I am diabetic but she does end up getting some at times.

The other thing we have found reacts really bad on her is swimming in a chlorinated swimming pool which is really hard to avoid in summer and by the end of summer she is almost at rock bottom just from learn to swim lessons.

I don't think skin allergy testing is too expensive. IgE levels (RAST) are expensive and knowing which foods to pick is difficult. These both only pick up on protein related immediate allergies and not delayed allergies. The delayed allergies often present as gut reactions.

My eldest used to get very severe eczema for the chlorine in pools. Changing our soap powder to Persil Sensitive and using an emulsifying ointment helped a lot. Persil Sensitive is no longer that sensitive and we use EcoStore or Aroma Naturals.

I can't believe I've never heard of this fructose stuff before.. I've thought for 2 1/2 years that DD had a salicylate intol. I've just recently thought more about things and started getting suspicious of fructose myself. The more I read the more suspicious I'm becoming..

Do others find sugar effects reflux in their older children too?

Amynoma.. I find stress and anxiety are huge factors in my 5 yo reflux. He was particularly bad leading up to starting school.. Also trampolines and rough and tumble too.

Foods that set my kids off are dairy, soy, highly processed foods, chips, lollies (actually anything the grandparents seem to feed them!), chocolate, juice (and all the other 'reflux' foods'. My list is by no means complete tho, and it constantly does my head in wondering what it is that has set their reflux of again this time.

jkm, that list sounds very like ours!!! And its not actual allergies because there is no immune response its more intolerance but it can still cause a really bad reaction. And I too thought my daughter was salycilate intolerant to start with but that just didn't always seem to add up, the sugar/fructose definately does add up a lot more!

We saw the doctor and have had my daughters dose increased slightly, although may just be temporary will have to wait and see, things are improving now though. The doctor came up with something else I had missed, especially as I mentioned the sugar and fructose, they suggested getting her a calcium supplement which the chemist gave us at the same time we got her new prescription and the change in brand but just didn't think about but it was pointed out the brand of calcium the chemist gave us, which is a children's one, the top of the ingredient list is fructose and natural caramel flavour! The doctor suggested increasing her dose of omeprazole for now to help her but to cut out the calcium and see if that helps and then when she comes right see if we can lower her omeprazole back to her normal dose. It might have simply been her reacting to the fructose in the calcium. At least things are improving now!!!

I'm pleased that things are looking up for you at the moment.

I'm sitting on a script for motilium for my DD.. So hoping i don't have to give her another reflux drug. Unfortunately the 'allergy' (IgG) tests we had done through the paed (which he sends to the USA), have just shown she is reacting to soy and gluten as well as dairy. We're looking at having to try a GF and DF diet. It would make my life so much easier if we i could sort out which foods she's reacting to.

I don't give my DD calcium, coz I was suspicous of the salicylate content in the brand my DS has.. One of the other mum's on the allergy forum recommended me a low salicylate brand of iron for her. But I'm not convinced it doesn't effect her too.. I need to have a serious think about this fructose/sugar thing..

How does your daughter go on fruit and raw veges? Which ones can she tolerate?

My daughter is fine on fresh fruit and veg, although was limited for ages because we thought she was salycilate intolerant but she seems to be fine and is always munching on fresh raw veg, she is limited in her fruit though apples are fine, pears, peaches, apricots and bananas too so long as she doesn't have too many all other fruits are a very occasional treat and only in tiny amounts or we end up with problems.

One of her favorite lunchbox items is carrot or celery sticks with home made humus dip.

Our pead won't do allergy testing as he is convinced she is just intolerant even though she reacts bad and the tests will be a waste of time because they don't show intolerances just true allergies.