Roz-Quick question, do you think there could be any other reason why leo gets cramps on and off? other than food? I cant put my finger on last nights trigger GRR But it really is literally crying every 10 mins... he had this reaction to bread and dairy ... any ideas????? I prob should add today hes very fragile! Crying over everything, and very cuddly... would it be the GA? I guess him being over tired isnt helping LOL

thanks Roz. i'm going to speak to our immunologist on tuesday and see whether he will organise the gastroscopy that he suggested, or if he thinks it's worth referring us back to the gastro paed. i too have wondered about it being an issue with his digestion etc, but when i suggested to the gastro paed that the fact he was reacting to every food made me think it was more about his tummy than allergies, he didn't seem convinced and wanted the multiple food intolerances investigated. i guess he's just covering all bases first? we'll see he's back on just neocate and i'll leave it at that until i've spoken to them. far out, so much happier aside from some dinner time tanties! least he's drinking again tonight.
sorry to hear leo is having such painful stomach cramps lelo. is it possible that it's due to the recent losec increase?

Bri-With these kids anything is possible even probable LOL I have no idea.. if anything I would of thought that the current dose would be kinder on his tummy as its split where as he always had it at once. Leo really needed his losec increased as he wasnt managing... and we had waited months in the hope things were going to improve.. but no. I am thinking maybe its the split dose, really I dont have any idea. I really hope that you get the help that you need this week.

Us-Leo was asleep by 6pm that how miserable he is! I am hoping this is a back lash for the GA on wed??? Dont know if its possible but hes a misery and I dont need anymore reflux food drama! His tantrums are horrible and all he wants in cuddles. He doenst have a temp but has lots of retching gagging etc. Im crossing everything hes going to sleep tonight!

gutz_cmum2 - I have to keep telling myself that I'm doing all I can to help these kids, but they're just so darn complicated .... it's not that you're an awful mum, more that you're doing all you can and more, it's just unfortunate that our best isn't always enough .... Huge huge hugs .... I'm with you on the communication thing - I'm hanging out till these girls can TELL me what's wrong without me trying to read a crystal ball.

bri - hugs to you. Sounds like a pretty bad reaction, and exactly like my two - stop eating drinking, get grizzly, stop sleeping .... I'm at the stage where I'm wondering why I'm doing food trials again. I'd rather manage the teeny tiny menu than deal with the effects of food intolerance .... Claire (and sometimes Jess) is on more concentrated formula which helps gives her extra calories when she's not drinking well, so that at least she's not quite as hungry. The dietician should be able to help with this ... Just so hard for you though .... and we want to encourage good eating habits for these kids!!! What a joke! It'll be interesting to hear what the immunologist says about the gastro-paed. I going to have to talk with him about this too. But I don't know that an endoscopy will give us any more answers (or lack thereof) than we have now, so I'm kind of in limbo now. Don't know whether to wait another few months, or what ....

lelo - I'm wondering about a SLT too .... but I don't know what they can offer us IYKWIM? The girls look forward to mealtimes, and want to climb into their high chairs, it's just the eating part of mealtime .... Huge hugs to you .... I just hate it when the kids are in that really fragile state. Hope tonight and tomorrow is better .... I was going to ask you, this is probably a really silly question, but how do you tell that leo has a bloated stomach? Fingers crossed that the liver function test comes back ok .... when do you get the results of the biopsys?

Question for Suomi and Roz: When you talk about keeping your kids going with whichever food your trialling, and they have a reaction to it, but you keep on persevering, what kind of reactions are you talking about? Is it just the refluxing, grizzling and not sleeping? Cause we also get the diahhroa and really bad nappy rash within an hour, and the girls stop eating virtually completely and cut down on their bottles heaps too. Our immunologist and dietician haven't talked about continuing on with the trial, but just told us to stop the food. I know when Jess was little with diary it got to the point where she had blood in her poo, and I'm assuming that if we continued with the trial this would happen again? I really don't know what to do anymore ... I'd love to give the girls more foods but I don't know how to make their systems handle it (if they can)? Do you know what I mean?

Here's today's example of solids:

breakfast - 1/4 rice cake (scrape meat off top and throw rest away) and a biscuit (which they both just sit there holding for 20 minutes). Then a bottle (dietician wants us to do solids first so they're as hungry as possible to eat as much as they can).
Morning tea - a biscuit each (these biscuits are the size of a rice cracker).
Lunch - Rice cake (same treatment as breakfast), Pasta (Jess eats none, Claire has 3 sprials), Lamb (Jess has 2 grams - 1/2 teaspoon, and Claire has 15 grams - 1 Tablespoon), and a biscuit (which they're too full to eat). Then a bottle.
Afternoon Tea - bottle when they wake, then an hour and a half later a biscuit.
Dinner - Rice cake (same treatment as breakfast), Noodles (Jess has 2 grams - 1 teaspoon and chokes 3 times, Claire has 10grams - 2 teaspoons), lamb (Jess eats none, Claire eats 20grams - 4 teaspoons) and a biscuit (which Jess fails to eat - just sits there holding for 20 minutes). Then a bottle.
And a bottle before bedtime.

It's just so incrediably pitiful ... and even if I starve them and limit their bottles it makes absolutely no difference. For whatever reason they can't/won't eat .... Just breaks my heart to have to throw away all the food that they don't eat, cause it's a much bigger pile than what they do eat. And the hardest thing for me at the moment is that I don't see anyway out of this .... Just going through a tough patch mentally at the moment I think ...

Just spent the last hour plus getting Jess to sleep, and DH is still with Claire. We had to go for a drive at 2pm today to get Claire to sleep finally - 3 hours later than normal! They both have a slight temperature and Claire's got a cough now to go with her runny nose. Jess isn't eating and is barely drinking - only had 2/3 of her normal day so is down 300ml for the day ... very very long tiring day ..... ah well, the joys of challenging children ....

Hi to everyone. I'm going to have a really early night tonight, just feel zonked ...

aww dolphin things sound pretty tough at your house i can't imagine going through it with two bubs at once and i'm always so impressed with how you cope! hope you get some answers from the immunologist too, or at least a plan of action that doesn't involve misery for all involved!! re the reactions from food, i was told by our immunologist to stop giving luca the food when he reacted, and not continue with the trial?
lelo, these kids certainly like to mix things up LOL. as Roz mentioned earlier, had you tried the losec with a ranitidine top up? i'm guessing that there is a point in the higher doses of losec at which the stomach cramps can't be avoided? here's hoping leo will have a decent sleep tonight

Dolphin-SLT is going to access leo for what he needs but apparently its a food desensitisation programme... so he will in time be accepting to food that are of diff textures and learn to chew properly etc. He chokes alot and cant manage alot of things and on top of that hes learning quickly that foods hurt and foods not fun. It was suggested too that leos lack of speech could be to do with his palate development from not eating foods of varied textures. I am more worried now at the foods leo's rejecting than the foods hes not allowed. As every food he has and was willing to eat hes slowly cutting out... so theres no consistency in what we can feed him. I realise that this is all age and stage stuff but he has some unusual quirks to go with it. And its important to me to have him eat what he can when his diets so restricted. Im not looking forward to food trials either but know we need to keep trying as I would hate to not feed him things he could have??? Will your girls eat lemondade ice blocks like the mini popsical ones? Leo loves them when his throat is sore etc. I Cant get leo to eat anything lumpy ie pasta noodles etc So your not alone there. The bloating with leo is obvious he bloats out from his ribs if that makes sense and literally looks pregnant. gastro paed is going to ring late this week and let us know the findings of the biopsies, but im not expecting any news as this scope was on losec and he said things looked pretty good. I think that its great that we know the losec is working. It's pretty traumatic way of finding out BUT we had no other option.

Bri-I dont think i could get Zantac into leo hes terrible at taking meds.. and last time i tried to give him oral meds other than pamol it resulted in him not taking anything from a food or syringe/spoon. But Its any idea to discuss with the gastro paed.. I wonder if it comes in capsule form? I will ask if we can look at this and see what happens. Everything with starship is on hold till biopsies back as immunoligist wants those results before she sees leo. So next week i should know more. And you should too ! HUGS

Awww, Dolphin. that breaks my heart just reading it!
It's such a shame as they sound like the really want to eat. I guess that is half the battle. It could be a lot worse if they hated mealtimes. So you must be doing a really awesome job there!!
I remember when Emily would not eat, and I wondered how on earth I could get her to eat. I used to sit there and will her to pick up the food and put it in her mouth and swallow it. (for a while she used to put it in her mouth and then spit it out - nice)
It's just so incredibley hard. Kids are supposed to eat. I remember so many people saying to me that no child has ever starved themselves to death....ha, ha, hadn't met my kid - or yours!

With the reactions. Emily's never sounded as bad as your girls.
With wheat, I used to giver her a sandwich in the morning. After her sleep she used to be a bit windy and grizzly. Actually sometimes she was just hideous - clingy and tantrumy. This went on for a few weeks and then she just seemed to settle down.
The milk was different. She was having it on her weetbix and seemed fine for a few weeks and then she started refusing her breakfast. She got quite violent at the bowl!
She's always seemed to know what food will make her sick and avoided it.
Her 'reaction' to wheat was never bad enough, or clear enough, to stop it, where as the milk was.
I guess if in doubt continue for a few weeks, but if it is blindingly obvious stop.
Hope some of that makes sense.

Hope Leo has a good night sleep Kells.
When Emily had her grommets she reacted really badly to the gas. I'm assuming the GA could do the same thing.

bri- hope Luca is happier on just milk. Poor bubba! And poor you, it really does your head in.

We had an interesting day. Hubby 'forgot' to give Emily her losec. His offical line is that we had our wires crosses - ha ha! She had the hiccups and was a bit fragile all morning. We worked it out and luchtime.
So still looks like she still needs it. Interesting.
Other than that she is all good.
Although she did have a super wobbly at the dinner table. She ended up eating her dinner in the 'thinking corner'. Sarah joined her so we ate our dinner in peace!

Right, I've been typing this for ages!

Suomi-What do you mean by reacted to the gas? I hope that the girls went down nice after your peaceful tea and sleep well for you tonight. Amazing about the meds, have you got an apt for lovely gastro man yet??? HUGS

Gosh, that took me a minute to work out what you meant! I must need sleep.
With grommets they use gas to knock them out. The put a mask over their face and they breathe it in.
It knocks them out long enough to put the grommets in.
She was hideous for at least a day, and it only stays in their systme for a short time.
So I can imagine the GA would be worse as it stays in the system for so much longer.

No appointment yet. Should be soon I'm guessing as he said he wanted to see her at 2.

Apart from still being on losec she really is doing well at the moment.
She is looking rather chubby and is eating a really good variety of food.
I really never thought we would get to this point. She hated food for such a long time that I love seeing her ask for food.
She still does have some hang ups though.
Her latest is to tell me to 'go away'. I guess she had me forcing food on her for so long that know she can verbalise her feeling she just wants me away!

Suomi-No wonder im confused (and you) as I held leo while they put the gas mask on him till he was out then i left.. but I presume that they top him up via the IV line they put in while they are asleep? I didnt ask though? But i know leo was given more of one drug due to waking up agro last time? so this time it took him alot longer to come round? I dunno .. Does anyone?

Suomi-Im so pleased to hear that there 'is a light'! Yah. Not long now till Emily is 2! Wow! leo cant communicate well so throws his food at me! GRRRRRRR Mealtimes are fun and games here LOL

I remember at about Leo's age that we started having a glass of wine with dinner - just to take the edge off!
We still have ups and downs with dinner, as it is her least favourite meal. Sometimes I just give up, get her down and give her toast after her bath. Bad habits I know, but I really don't care!

Only 2 months till her birthday - that's 10 weeks. Too soon! She's my baby, not a nearly 2 year old.
Every day she loses a bit more of her babiness.

Sorry to be rude and join in the chat. we are having a reflux flare.... it always brings me back to this site!

lelo - i felt like we were at your house last night! i gave my daughter some beef for the first time. well, actually a crumb of mince was all i could trick her into taking (put it on the underside of her dummy, mean old cow of a mum that i am.) she screamed. 10 mins later, spots, and then up allllll night. the crying every 10 mins thing etc etc. eventually i propped her up in bed beside me on 4 pillows and we snoozed for a couple of hours in between whimpering and her sliding down on top of me. so beef seems to be an absolute no no. i wonder why it's so hard on their little systems? anyway, i did feel for you. she used to do that a great deal of the time in the first year, but she hasn't had a night like that in ages. i don't know how you manage considering you still seem to have nights like that a lot. hats off to you!

suomi - i pm'd you. don;t know if i did it right, i'm a bit of a technological dinosaur? Re Emily growing up, you could always have another – he, he, he.

bri - sorry about luca. i just don't know what to suggest. i always had at least one thing that my daughter could tolerate, so to not be able to give any solids at all............... i really hope the gastro paed can suggest something.

gutz - i just wondered... you know you said you don't think the reflux is the prob? could you try a losec increase anyway and see if it helps? the only reason i ask is that we had a string of back-to-back ear infections in the first year, before she was taken off dairy. the gastro paed in the uk told me that it was quite probable the reflux was causing them. apparently the stomach acid can get into their ear tubes..... how bad is that??? i am with you on the grizzling all day thing. i used to find it harder to deal with than the nights.... it just grinds you down completely. i felt so oppressed by it. it makes being at home with them so hard.

dolphin - my daughter has the same food reactions as yours, and in answer to your question, there is no way i would consider persevering with the offending food. when i trialled wheat, the reaction was much milder - one or two night wake ups, diarrohea and a bit scratchy. in that scenario it was perfectly feasible to keep trying, but with the stomach cramp reaction, to continue giving them the food would just be torture. for them and you! i'm also sure it wouldn;t work. i was also going to say, in my humble opinion, i really, really wouldn't do any more food trials right now. you still have the remaining eye teeth to come through. i found that, that on its own, was enough to cause serious reflux misery. i stupidly did continue trying foods, and it was just a dumb idea. i created all sorts of confusion for myself (was it the food or the teeth?) and put my daughter through some unnecessary discomfort.

in all honesty, my daughter probably eats less than your girls at the moment, but i have just decided that the main priority is to keep eating as low key as possible so it's fine. and it sounds like you have totally achieved that with your girls wanting to get in their high chairs! plus she used to eat quite well, so i'm hoping that the last couple of months are a phase..... arrrrgh. i also think that priority number one is controlling the reflux and eating will follow. she is surviving on her concentrated neocate and i top her up at night. she doesn't seem to be visibly losing weight....

i also have a theory that how can their little stomachs improve/ recover if they are constantly being aggravated? the best my daughter has ever been is when i gave up on food trials and fed her the same stuff for about 8 weeks straight. rice, chick, lamb, pear, kumara, carrot and banana (i know, odd one but she seems ok on it.) for the first time in ages after that i got a few "hits" out of the food trials. prior to that everything i had tried she reacted to. her reactions after the break were also noticeably milder, but after a bad run of teething and illness, they have been getting worse again. eg i tried bacon last week, on a bit of a whim because her sister had some and she was desperate to try it. she was up a lot, really acid breath and minor cramps, but then the beef last night was the full monty. i could be talking cr@p but i really think there is something to be said in giving their wee stomachs/ systems a break. getting the reflux stable (teething and illness aside) is the most important thing. then, the food trials can follow in time. just my opinion......... (as you can tell, i am probably desperately trying to justify to myself abandoning food trials for the next few weeks!!!)

sorry again for barge-ing in. now, i have had my relux download i will disappear into cyberspace until next time!

Kt-Welcome back! Sorry to hear that you had a night like ours last night. Leo is terrible with beef, no matter what form it comes in... last time he had roast beef (tiny ammount) and a aria farm beef chip he retched and gagged then 1-2 hours later power chucked.. and the next day he ended up in hosp on NG Fluids! The Consultant we saw didnt think beef could do all of the above & said leo had a 'food aversion' so we're none the wiser. I did challange him again and he wont touch mince, corn beef or any other form ive even tried tricking him. I was wondering if its whats used to preseve it??? He can and will eat lamb okish but not chicken? He chokes etc. Im not the wiser but not in a hurry to have another try! I hope that you can get off the reflux roller coaster soon! HUGS! Have you managed to stay with the losec decrease you were having success with???

Suomi-Im willing to feed leo anything at whatever time but he just wont take it! breakfast is always refused but offered.. lunch often isnt touched...Dinner can be hit and miss and snacks well he may occasionally! Its like hes restricting his diet even more and im running out of new ideas to tempt him with.I think i need a bottle of wine a night LOL HUGS!

Us-Oh what a night! Things arent good here! I dont understand what the problem is....Leo is asleep already this morning wont eat anything is just wimpering and asking for neocate. I really hope he wakes a little happier! I think we will be off to gp tomorrow to rule out normal things....

Hows the rest of the kiddies?

lelo - hugs girl ... I hope it's just (JUST!!!) the GA causing a flare up of reflux .... I know Jess is particular awful today and it's about 4 days since she had maize, so I know her reflux takes a couple of days to really kick in .... I wish there was someone somewhere with a magic wand who could convince these kids to eat .... it really sounds like your going backwards which is worrying. At least we're only standing still!! I know the gastro-paed also told us that if Jess's reflux wasn't controlled at max dose then he'd look at adding zantac, as some kids need this combo to control it. But with you already over the max dose .... Also, when you talk about leo's reaction to beef, sounds EXACTLY like Jess!! And hers has definitely been classified as a food intolerance reaction! So some of it MIGHT be food aversion, but most of it will definitely be a food reaction! Jess chokes, gags and then vomits/spills a hour or two later. Then the reflux flares up pretty darn quickly so the sleeping goes and she stops eating and drinking. Depending on how severe the reaction depends on how much she will still drink Neocate, but she always stops eating for at least 2 days.

Suomi - you give me hope! If Emily can get there .... Might take us a little longer, but maybe .... Thanks for the explanation, it really helps. Helps me confirm a little about what I/immunologist is doing .... Isn't it wonderful when they look a little chubby!!!! All that hard work finally pays off!!

k-t - great to hear from you. Sorry that things are a bit messed up with reflux at the moment. But thanks for sharing the info, it really helps me know that I'm not alone ... The patch testing we just did came up with reactions to beef, which we hadn't tried yet, but was on our list to try soon. So needless to say after that plus hearing other kids reacting to it, it is now officially OFF the list!! And we didn't even need to suffer a food trial!!! A freebie!!! It really does reinforce my gut instict to stay away from food trials for a lot longer - 3 weeks isn't long enough! My girls can just exist on lamb and rice for another month or two yet .... their little tummies are just not up to anything else I don't think .... and of course there's the me factor - I'm not ready for anymore, not after this morning.

my two - well it's been a long morning. Thankfully they're having a decent sleep now, mostly cause they're so knackered. Jess was up and awake at 6am this morning, and I think she's starting to get a snuffly nose too. Claire's nose is running like a tap and she's all over the place. Can't walk properly and keeps falling over. And then of course gets VERY upset about it. Jess's reflux is miserable. hiccups, and VERY VERY clingy. Won't settle for DH either. He had to entertain the girls while I did the vacumming (Claire gets upset about the vaccum cleaner so he takes both of them away to another room) and Jess just cried hysterically. My heads feeling not that great either, so not looking forward to this afternoon. Ah well, hopefully it'll all pass soon. At least I know what's causing all this!!! Must be a first!!!

lelo - I just put the girls in their highchairs and put a DVD on. This will keep Jess quiet and entertained, while Claire eats! If I don't put the DVD on .... YIKES! I only go over to them when they need more food, otherwise I leave them alone. In fact I must tell my MIL to stop trying to give them food or put it in their mouths, cause they WON'T! But I figure if I can at least make mealtimes stress free (for me!!! ) then I'm giving them the best opportunity to eat. If they still won't eat, then they obviously can't that meal.

Hi everyone - am new to chit chat but just wanted to make comment on how wonderful it is to read all your stories as it makes me feel as though one can "survive" having a baby with reflux. Being a first time Mum is scary enough without all the complications. You are all a real inspiration.

My DD is 11 weeks today and we are due to see a Paed on Monday for assessment. The last 2-3 weeks of my life as Mum has been a bit of a shell-shock as DD was born such a carefree little girl who was a good eater and very good sleeper. Day sleeps now out the window and feeding is diabolical - she cries as soon as she thinks she is about to be breast fed. I can't even think of any other reason why she has suddenly developed an aversion to be fed apart from her being in some sort of pain. The GP is not entirely convinced but suggested it could be 'silent reflux' as no vomiting or much spillage.

I have now tried many of the tricks to get her to feed, e.g. breasfeeding while walking around, but it seems she is too clever as after using this a few times she wisens up and refuses this too - it is so very tiring <sigh>.

DH has managed to get her to sleep after painfully spoon feeding her some expressed BM - I will have to get her up before she wakes herself so I can feed her....oh fun and games. Here's hoping for a better end to the day.

Take care you all and enjoy what is left of the weekend. Am not looking forward to battling with her this week on my own when DH is back at work.

Jazzie- Welcome and sorry to hear you have had to join in on our fun! Best wishes for the pead on monday. Hope you get some answers for your cutie pie.
K-T...don't ever feel like you barge in here,that what this whole thing is here for babe. Please visit us on your good times too so we can have a smile and see the light.
Us- MMMM update when I can think haha

Nice to see you Jazzie and k-t.

I did get your PM k-t. Spooky! We have each other's live. Though I bet you have better hair than me......frizzy ball of knots!

Jazzie, I really hope you get some help from the paed. It is not normal for a baby to not want to feed, and to scream at the boob.
Take a list of symptoms and behaviours to discuss and some questions to ask. I always used to get in there and forget what I wnated to say!

us- Grublet was up several times last night with her last eye tooth. Nearly through, so hopefully tonight will be better. Lots of lovely cuddles though, so it wasn't all bad.

As to having another one......oh my god, the memory hasn't faded that much. I still have very vivid flash backs to not feeding! I'll cuddle my neices and nephews and friends babies.
Plus hubby might just curl up and go fetal if I suggested it.

Back later.....of to tire them out at the park. We had my nephew's party today so we are pumped on sugar and cake - hubby and I that is not the kids!