oh absolutley roz, psych involvement is a totally positive experience which involves encouragement and game planning (help with how to approach new situations) so there is no need to resist it for fear of negative connotations.
And sometimes just a minor attitude shift (say for example: Jess CAN eat as opposed to Jess CAN'T eat cos she is intolerant to everything) can make such a HUGEEEEE impact on how you as parents approach getting Jess to eat and how Jess would react to the changes you make in approaching eating with her. Alone, those kind of attitudes can be very very difficult to shift, through fear of the possible consequences (of her eating), but with support and understanding and planning, it will make it so much easier for you all.

just as an aside, my 2 year old has developed reflux as a toddler (we think due to her chronic constipation) and she is definately, without a doubt, worse after she has had a bottle of milk. she lies there (or sits there) refluxing away for ages and ages. problem is its the only way we can currently get movicol into her.

Oh yes, Movicol is one of Gem's favourite things, not! A straw makes it better apparently!

YM - did you end up having the coeliacs test?
I was chronically constipated before I was diagnosed and had terrible reflux.
It was so not fun!
Like my whole digestive system was screaming out.

not yet suomi but plan too. she see's the pead soon.

Good luck with that.

Thanks gals. Given how sick Jess is at the moment with a chest infection (she's on AB's) and hasn't had a bottle now for about 4 days, and barely touched it for about 5 days before that, so I'm contemplating just hanging right back on the bottles completely (as she's already doing) once she comes right and seeing we're suffering now as bad as it gets, I might just do a complete transition to solid foods, ride out the reactions (but there's some foods I'm not touching yet! Like dairy!) if there are going to be any. As she gets better she be slowly increasing her total volume anyway. She's been eating bread/toast now for 3 days with no problems so I'm really really pleased with that.

I guess I've needed to go through this to come to the realisation that there is no "fix" for her reflux. That even surgery (though still a possibility) is not going to "fix" it either. The new ideas and thoughts from the new paed are a great help, and I am certainly going to go part way down this road, but as he and I both said, it's like looking for a needle in a haystack, and we might never find the answer, and some tests may not be worth doing due to the harshness of the tests. So we'll do some broad spectrum screening for metabolic disorders and test out the inner ear/motion sickness theory, and then we might just leave things alone for now and see how much improvements we can make with a solid food diet, and talk to the new gastro-paed about what we can do to minimise the flare ups when they occur (as in is she old enough to take mylanta or anything similiar).

Your thoughts gals are truly appreciated. I'm going to take a day or so to process things, get the girls back on their feet, and then get on with accepting the reality and loving my little girls a little bit more.

Hi Dolphin

I wouldn't give the Neocate Advanced away entirely - but it should only be given after a meal of solid food - and probably not from a bottle. Whilst she learns to eat, it has important nutrients especially if she isn't have any other form of milk.

We are still waiting on test results for Gem and are sort of on the last thing we had to try to improve her symptoms of whatever has been causing her severe pain for the last seven to eight weeks. Her three specialists and ourselves agree that there is to be no more testing unless things change because we are unlikely to gain anything from these and they will do more harm. We are told to expect her to be like this for three months to a year. Amazingly children adapt to severe symptoms and cope far better than most adults would. Gem is seeing the psychologist for coping skills.

We do have several medications we can use to help minimise things but Gem really does only have these for flare-ups now. Mylanta can be used from a young age I believe and we have useful since Gem's surgeries.

I didn't want to put you off surgery, just reassure you that life can still improve without it. I still don't know if it was the wrong choice for Gem. Maybe things would be much worse now without it?? Without knowing the cause its impossible to tell.

So glad to read that the girls are tolerating solids so well must be a pleasure to see and give you some hope. I also agree going from limited solids to solids again I would still recommend the Neocate Advance after meals as a top up and given they are not on dairy also. DS is still on Neocate Advance for that very reason abit only one glass at breakfast.
Are they going to give them a PH test Dolphin??
Whens your gastroscopy. I would be giving them a really varied diet prior to really rule out EE.I know that in the past you have doubted there food intake prior to a scope and always in the back of your mind wondered about EE as they have never been on a full diet.This would be the perfect test.
With the motion sickness are you saying the vomitting would be causing nausia therfore making them not want to eat?Sorry just wondering wouldnt the motion sickness be a intermitant thing when on slides or swings not a continuious everyday feeling therefore I am thinking the lack of eating is more learnt behaviour??

HK - no plans to PH test them (though the paed said something about checking her ph when we do blood tests at starship .. not sure what that's about)

motion sickness causes people to feel nausea and vomit and turn pale once they have had particular kinds of motions (some people can't handle boats for example, others can't even tolerate driving). So the motion causes the vomitting, and nausea, so she doesn't want to eat or drink her milk for the rest of the day. It can take hours to settle down. I know when I get sea sick I feel awful for quite a few hours after.

But yes, lack of eating is a learnt behaviour, and mostly due to the pain of having constant oesphagitis and therefore swallowing hurts. defintiely work to be done ....

I'm not sure why he would be testing the Ph of the blood either. It is done with some children receiving specific therapies but not usually GORD therapies that I know of but I don't think it has anything to do with her stomach.

Gem had motion sickness to the extreme with her GORD at age three to five years. She had some fainting episodes which were tracked down to Prepulsid so had to come off that, and then would vomit a minute down the road which was so much fun - not. We used the motion sickness wrist bands with success. Something easy to try Dolphin. Sorry I had forgotten about them. Buy them from the pharmacy - like a wide hairband with a plastic dot in them which you put on the pressure point of the wrist. Instructions come with them.

hmmmm, can't see any reason for checking the blood ph either. but good to know they don't need ph testing huh.

Heck yeah because that is one PITA of a test! And not all that reliable to boot.

How is it going Dolphin?

Hi

Many moons since I used to visit here. I have since re-joined but have no previous account for you to refer to.

Just to put you at ease of the FOOD thing.

My DD (5 in September) had chronic reflux as a baby/toddler. Losec, Bar swallows, under Starship. OK (she is now almost 5) for the last 4 years she has eaten NOTHING other than peanut butter on white bread. SHe has NEVER eaten meat (except when she was eating jars at, say 7 months) she has NEVER eaten a lolly, NEVER eaten veges (again, since she was on jar food). She lives on Peanut butter and bread (sometimes she goes off bread and just eats peanut butter out of the jar). She has been under SS care all her life. We have seen the Child Psych team (Linda Chard...can I say a name, she is with SS so not private). They do food play. We had had the SLT (as she gags on food at times), we have had the OT around home every week for 6 weeks, we have the dietician. We have had another Bar Swallow at age 3.5 years, we had a gastroscopy toward the end of last year.or was it beginning of this year?LOL.

ANYHOO....there is nothing 'wrong' with the child. The Bar Swallow showed to be slow BUT this was due to stress (she hated it...refused the milk so had to have NG) Poor thing!! She has been on pedisure for a year or so and as she is losing weight (lighter than she was Oct 09)..they have increased it. SHe is at preschool at the mo and takes white bread in her lunch box. No peanut butter allowed, damn it!

SO....even though she does not eat and we have explored all avenues we have just accepted it. She will grow out of it. Currently she is food phobic (seriously). It has been a long road and we have put a lot in to it but looking back (and I am saying this whilst she still lives on peanut butter) I really wanted to find a REASON. *I* NEEDED to know what IT was. I guess it is all linked to an anxiety issue that surrounds food. I often wonder whether my pushing food and trying (all with best intentions) made it worse and it probably did. It made food time a negative thing. Sometimes you can;t have a reason as to why...you just have to plod on.

People may frown at this, let them, but my DD still has a bottle. She refuses to have the pedisure out of a cup so in the bottle it goes.lol. Even that behaviour of having things 'just so' is probably a pointer to her being a quirky/anxious child.

I hope I have not gone too far off the mark. Just thought I would reassure you on the food thing.

Oh and her latest bloods (routine) were perfect!!!!

Hi QEII

Thanks for sharing. So the main form of therapy for your daughter is the Child Psych Team and nutritional support in the form of Pedisure?
You say she was eating jars at 7 months. Did the eating issues begin after that?

Its reassuring to know nothing is wrong but also very hard work because that is all you have left - hard work. Dolphin's daughter is eating again but it still sounds like it is hard work.

I think whilst not making food a battle, that it is also really important to make food normal. Having meals together. Having the same foods on their plates as yours - or as near as possible. We have multiple allergies here and actually eat the same 99% of the time and still have a varied diet. And then there is letting the child know who is boss - you as the parent. Maybe not just in the area of food - but in other areas as well. As in "It is winter, you need to wear a coat when you go out outside. Do you want to wear the red or green one?" Our paed. also got us at preschool age to let out daughter have 20-30 minutes to eat, then take the food away and make her wait until the next mealtime/snacktime. It helped improve what she did eat and helped improve her GORD because she wasn't constantly grazing and digesting, and actually got hungry. Seems so simple now but wasn't at the time. I'm not a psych though and you should always follow your health professional's advice.

Food is such a difficult area because our babies with GORD do have a higher incidence of allergies and intolerances, and regardless of that they can learn that food hurts or food makes it better. It seems to be crucial to do the stages of food at the right ages regardless but I remember how stressed it made me.

QEII,
I just wonder if you've read the full thread.

Dolphin's daughter is clearly different to yours as active reflux has been diagnosed which requires management.

A liquid diet is much easier to reflux than one mixed with solid food and so while your child may manage on minimal solids Dolphin's daughter has this as an added issue.

Your daughter's bloods were probably fine due to the pediasure which is a total nutrition formula - rather than because she can survive perfectly on just white bread and PB.
I'd hazard a guess that your daughter's declining weight is an indicator that she's not really holding her own on her 'diet'.
Declining weight can affect a number of developmental areas for a small child so I personally would find that cause for concern - as Dolphin does with her daughter.

Food issues are a hugely complicated, difficult, stressful and messy area which can take literally years to sort out. I'm glad for you that you have found your peace with where your daughter is at - but for most people food aversions are not something they just 'grow out of' but require time-consuming, painstaking work on the part of therapists and parents. It may seem like no one's doing anything but baby steps forward need to be taken all the time.

Patient, slow, reassuring that food is okay, fun and safe is how we got our now 12 yr old but then 2 year old, food aversive, totally pediasure dependent child to where he is now.

Our youngest is tube fed and until recently I'd have said he was making good and steady progress and probably down to half and half tube and orally fed. He's run into mechanical problems and at this point, yes,you are right. We'll take whatever food we can get into him however he'll take it. I know we're going to have a long road back but pushing when he's clearly in pain WILL set up psych issues later so we'll just have to go from where ever we are once this is sorted out. Just by the by Thomas still uses a bottle aged over 5. Delivery method is not so important as what's being delivered - with you on that one!

However the same slowly, patiently, gentle momentum forward approach has NOT worked for our middle son who is currently FTT, not gained or grown in about 9 months and is dependent on a high cal formula - and is getting psych input on the food aversion, looking at changing the thinking around food behaviours.
So while reflux was the base cause of all my kids' eating difficulties they have responded and needed different help in different ways.

Best of luck with your daughter's progress towards a solid food diet!

Clearly, I have struck a nerve. I stated that I just wanted to give reassurance on the food front. However, I will respond (with a cup of tea at my side) to your post.

No, I said in my post I just wanted to reassure of the food front. I skimmed and felt that my experience may have been of some reassurance




My daughters bloods have always been fine...regardless of pedisure. She was given the pedisure purely to 'up' the calories to a more reasonable amount.



Despite my daughters decline in weight they (the Paeds etc) are quite happy with her progress. I guess everytime I see them they ask if she is happy in herself, social, keeping up with her peers. I do find my daughters weight loss a worry but I am happy with the increase in pedisure and I suppose I take comfort in that she is being monitored. At the time...we had FBC, clotting studies, B12, folate and iron.......all fine so that was reassuring.




You're telling me!!! Perhaps I did not express myself as well as I should've. When I say I accept that peanut butter and bread is it...I mean, I am reassured that she will live on it. It is very hard to accept especially with all the hours I have put in to making meals. To answer Roz, yes the Child Psych team do suggest family meals in a 'buffet style' and having a plate of food dished out for DD which she has next her plate of sandwiches. When I say 'grow out of' I reassure myself with the fact that when she is going out to dinner with friends/boyfriends (eek) in her late teens/early 20's she is not going to take her bottle (maybe bottle of wine) and peanut butter sandwiches with her.LOL

Roz - sorry, back to your question. It is hard to know when the food aversion happened. We guess it coincided with the removal of Losec at around 1. We started her on Losec again at 3y 11m as she started having tummy issues and was able to communicate. We currently use as and when needed. No intolerances or allergies.

I do understand how difficult it is to have a child with reflux, infact, I have reflux myself that comes and goes (for no apparent reason - like DD) and it is awful. I just thought that it might have been reassuring to know that others had the same food issues.

Well, that tea has gone cold but I deserve one after than effort!! I had to work out how to incorporate quotes in to my post.

lol queenie

reflux and food aversion are 2 seperate issues that can absolutely be intertwined of course (or not). doesn't mean one person's experience can't relate, just because the path may have been different iykwim. and the sharing of experience and gained knowledge just as valuable.

and seeing as jess is now eating heaps (from eating nothing but a few rice crackers and neocate only a matter of weeks ago) i'm assuming the reflux (or even the food intolerances) is not necessarily the biggest factor in their situation maybe? and correct me if i'm wrong, but aren't they now saying jess doesn't have reflux anymore but instead has some motion sickness thing causing the vomiting?

Thanks for your thoughts and experiences QEII. It is good to know that there are others around struggling with food issues.

Jess is doing really well on her foods, consuming heaps of carbs - loves her bread and crumpets, usually with either mayonaisse or margarine, so awesome that we're getting some fats into her! There's a lot of work ahead of us as protein is a big issue, as she barely eats any in a day, though have just discovered that she'll eat egg whites from boiled eggs, so she's had 2 eggs today!

Other food textures are going to a whole heap of work, and I haven't really started thinking about that - trying to deal with Claire's leg cast issues at the moment, so I'm burying my head in the sand a little. But she really only will eat crunchy food (toast, biscuits etc) though starting to do better with margarine etc. But yeah, I guess I'll start thinking about the rest of that soon and I think we'll go make some appointments with a SLT to get more ideas and help ....

Will chat with the paed tomorrow, so fingers crossed we have more results. Motion sickness is really a biggie as we discovered this afternoon in a long (45 minute) car ride, causing pallor and vomitting. We had issues with the fructose (we think that's the problem anyway) in the dairy free ice cream she was eating. So at least we're getting to the bottom of some of the issues, but it would be so nice to be able to feed her fruit or veges .....