Glad you enjoyed the article Lelo. Thanks for your contribution.
I hope and pray that all goes well today.
Time to start a new thread everyone - it might be less daunting for the newbies.

hi ladies (and mr dolphin) was lovely to bump into you dolphin pleased to hear you're getting some answers!! what a relief
well, we have some preliminary results, though will be interesting to see tomorrow what is just irritation from the patch and what's an actual reaction. so far it seems to be: soy, dairy, chicken, peanuts and wheat. i was surprised that rice and lamb didn't show up, as they seem to have been our worst reactions. perhaps they're just intolerances though. well, hopefully we'll know more tomrrow

good luck today lelo!!

Hi gals. Been a long afternoon digesting the prelim results, and trying to stop beating myself up .... Claire showed up 3 reactions, beef, wheat and egg. Jessica showed up 6 reactions - egg, wheat, peanut, rice, chicken and beef.

Guess what we thought were safe foods for Jess ; CHICKEN,RICE and LAMB!!! So at least 2 out of 3 we've been so so wrong. :sob: Can't believe how long we've been feeding her food she can't handle .... gutted, just gutted ... :sob:

They haven't shown (so far) any reaction to dairy or soy, so it looks like they might have actually outgrown that one. So that's a relief. We're not going to do anything about testing this until after we've seen the allergy specialist next week. We'll talk with him and see what we do. The girls also showed no reaction to potato or celery, which has really really surprised us. looking back, it's probably got so confused with all the other food trials that we've managed to screw them all up .... We made the assumption that Rice was ok .... and chicken .... boy were we sooooooo wrong .... I just wish that we could have had this patch testing done months and months and months ago ..... Just can't get over what we've been doing to our babies ....

Good to have the wheat confirmed though, and to know about the egg and peanuts. We've now just got to go back to square one and figure out who can actually eat what at this point it time. At the moment Jessica's menu has one item, lamb .... So we popped out to the supermarket this afternoon and got some pasta that is just made from maize and have given it to the girls for tea, cause they need more than just lamb, and the only other things we've got are rice and chicken! So we're going right back into doing food trials out of shear desparation, cause they have to eat something! We're going to go back and test kumara and pumpkin again (cause they used to be ok with it) and we'll probably try vege crisps and a couple of other things too .... oh the headache's just begining .... well maybe not, maybe now that we've finally got a few answers we can actually start making some right decisions ....

oh and Claire's back looks awful - worse than Jessica's!! But it's cause she's reacted to the hypo-allergenic tape they used!!!

So we'll see the specialist tomorrow for confirmation of exactly what's going on, and ask him a few more questions (about whether a negative test result really does mean negative reaction, and whether the celery and potato are representative of salicylates, and whether the beef reaction (by far the worst for both girls) means that lamb might be bad for them too .... ). Then we'll see our usual allergy specialist next Thursday and discuss more about where to next. Then I guess we'd better go see the dietician ....

The girls ended up missing lunch cause they fell asleep in the car on the way home so we put them straight to bed. And we only gave the girls maize pasta and lamb for tea, and they've both been sooooo much happier this afternoon! Went down to bed without much effort too, and we haven't heard any stirring!! Unheard of! Claire virtually inhaled all her lamb and ate most of her sisters too!! A whole 36 grams in about 20 minutes!! More than she does in a day! We now have the added dilema of course of whether to give Claire a whole different range of foods than Jess. Cause Jess is going to need to be really restricted for quite some time yet I suspect, but I also think that if Claire can handle stuff we should be giving her more variety .... and then Jess will probably want the stuff her sister has ....

lelo - hope things have gone well for leo today. And I hope you guys are at home crashed in your own beds tonight ....

bri - interesting results so far. We found that some of the things that came up pretty quickly on Claire (rice and chicken) have actually gone away by now. So we figure those must be the irritation ones. But when we looked after the girls bath tonight the other reactions were much clearer. Have you found the same? Or are all the welts looking the same?

Hi to everyone else.

some of them have gone down a lot, but almost all the squares still have like a raised circle - are you none reacted ones still red and raised? the one for dairy and peanuts, the whole square has turned into eczema like red patches...not sure if that's the tape or what, but it's red inside the disc too, and the ring of the circle has gone white. should be interesting to see what they look like in the morning. poor claire reacting to the tape!

Hello

Bri/Dolphin-How exciting! Yah for getting some answers cant wait to here what the final results are.. do they take todays or tomorrows?

Dolphin-Dont beat yourself up, its so hard to know and tests can give false postivies negatives etc and after all the girls have to eat soemthing HUG!

Suomi-Gastro paed is the best! When do you see him? must be soon? You are so right about the double edged sword? Is it endscopy path you will be going down? if Emily not off meds?

Us-What a hellish day! Leo didnt handle the trip well he choked gagged and retched and screamed most of the way to AKL and vommitted and retched all teh way back! 6 Hours in the car today wasnt good, the weather was horrid too! We had a great chat with the gastro paed today and have a plan of attack YAH! Scope didint find any surprises there was limited inflamation which means his meds are working.. Biopsies wont be back till next week BUT it looks like were winning the battle with the lattest increase! Paed brought me back to reality a little and that there isnt a magic fix its about controlling the acids with the meds that are available and when that fails its surgical options... I still perfered the first option, A magic fix! So stayed tuned for next weeks chapter LOL! Im to tired to finish this... but wanted to let you know were ok and home!

HUGS and thanks so much for text etc Will post tomorrow.

What a day for you all.
Great there were no suprises Lelo and it all looked OK abut I guess the biopsies will tell, what did he think about EE??
Dolphin and Bri...I was like you totally suprised by the chicken and rice because that was all James ate but since we elimated them all was SOOOOOOO much better.Hope the same applies for you.
James came up with chicken,rice,celery,soy eggs dairy,wheat and boarderline on potatoes but he is OK with potatoes(spec said to elimate if we had further pros)but we havent. James reacted to the tape also I bet they screamed getting the tape off.
James welts got worst as the days went on.
Telstra rang today and they have stuffed up our order so yet to get my modem(on hubbys work laptop) I am so pissed off with them.
Hugs to everyone who needs them
Not long now Kids2!!Lovely weather here still we are all still in shorts and tanktops and swimming most days.

Hk-Gastro paed said no viable signs of EE, but didnt think we would see anything due to restricted diet for 12+ months.. He still feels its a possibility so wants the diet adhered too & depending on biosies and allergy testing will determine what we do include back in etc. It is so great to know that the losec is working! and that the refluxing isnt causing pain more discomfort IYKWIM. I am so relieved! Had to laugh when he handed me photos of leos insides for the scrap book LOL I think we have been really lucky to get onto special formulas, and losec etc at leos young age. I really dont know how else we would of cope! You really deserve medals I can only imagine how James was with no meds etc! HUGS How is James new diet etc going?

bri/Dolphin_How did it go today. I have everything crossed for good news.. or at least something to work with. HUGS

Bri-Any news on when Luca's scope is?

Leanne-yah for a good school visit, I hope Missy is feeling happier today

Lynne-Hows the meds going with Charlie is she ok??? HUGS and hope your feeling better.

Suomi-Hows things at your house??

Hugs to all Leo is happier today! He woke smiling today first time in weeks! Im still not convinced the split dose losec is the best thing for him... but I dont know how else we could do it cause he cant have it all at once.. so ill play the game for a few more weeks! DH is home today too so thats a bit of a treat! I even made it out clothes shopping with Mum, without Leo! It was great!

In Roz's allergy dictionary:
**I think we need to drop the term allergy and change it to "immune reaction" hence the official term for an allergy specialist is an "immunologist".
**Immediate IgE mediated immune reaction (allergy) also known as Type 1 = generally shows up on skin allergen testing or RAST tests and is more likely to cause skin rash than the next type.
**Delayed IgG mediated immune reaction (allergy) also known as Type 3 = can be tested for with the patch testing and is confused with intolerances. It often shows up as a gut reaction only.
**Intolerances are usually due to an enzyme deficiency and don't involve immunolobulins. This is lactose intolerance is where the person doesn't have enough lactase. They can drink milk with the lactose removed or depending on how lactase deficient they are, tolerate small amounts. It would be unusual to develop a rash with an intolerance.

Some of the experts can be confusing also as they discount anything that doesn't result in anaphylaxis as being an intolerance. That isn't safe in my opinion. Things are changing though and hopefully the terms will become more consistently used. I know I'm been at fault in the past for saying a delayed immune reaction was an intolerance. Sorry if I keep on going on about it. Patch testing becoming available proves things are changing and about time. Does anyone do it in the South Island?

Great that it looks like you are going to get some answers Bri.

yay for a happy leo! and great to know that he isn't in any pain. you're right, thank goodness for getting onto meds quickly.
hope the biopsy results can shed some light for you.

well, most of luca's patches had faded this morning, but he wrote down a slight reaction to beef and chicken, and question mark for soy. none the wiser really, as he hasn't eaten any of those, so no explanation for his current feeding issues. i guess it suggests that he has a sensitive system. i'm thinking maybe intolerances. have another appointment with our allergy guy on tuesday, so i'm hoping to discuss the results in more depth and look to what our options are. the guy who did the testing wasn't up for much talking....anyone else experienced that??

also, has anyone done the hair strand analysis for intolerances? i realise that these aren't endorsed by the medical community, but they haven't given us many answers so far, so i'm considering looking elsewhere...

not sure about the dates for the scope lelo, i'll ask on tuesday whether he still wants to go ahead with this.

how'd you go dolphin??

No internet till next Wednesday
I so have withdrawals!!
8 weeks without regular access is driving me insane
Internet cafes suck!!
How are the tests looking today ladies.

Bri--Yes I mentioned the other day to Dolphin that V C would not answer any questions!!I found him quite blunt to say the least.

Don't beat yourself up at all Dolphin as the foods you choose are generally reasonably safe. It will be interesting to hear the final results and opinions - then it is down to proving the theory. It isn't easy unravelling things is it when there is more than one involved?? Miss 15 and I have different food allergies to each other but share three. Gem, myself and Miss 15 share two the same.... that we know of. I see the immunologist in a couple of weeks and I am going to discuss allergy testing for Miss 15 the same week with her GP because she is constantly having problems on a restricted diet.

I think it will be easier to keep both girls on the same diet whilst they don't know any better. I'm guessing you cook separate meals for yourself so you could give Claire safe items from this without Jess seeing possibly. I generally cook the same meal for everyone but sometimes have to cook two versions - it is all gluten and dairy free, but tomato and pork make it more complicated for us. Going to make our meals pea free again when the packet is gone out of the freezer because Miss 15 is allergic to these and had a sore throat the last time we had them. Peas are something we can live without.

Best wishes and hugs!

Hi all,

I've only skimmed the posts....our stoopid ihug internet has been down since yesterday morning!

Glad to hear all the testing this week is now over for everyone.
Hope you get all the results you need from the patches bri and Dolphin.
Interesting that what you thought was ok for the girls wasn't, Dolphin!
Hope they do OK ont he 'food challenges'. They have to eat, after all!
I seem to remember it taking Emily a while to get used to new foods. When we introduced wheat I was sure she was reacting. Every dat I thought to myself that I would stop it as it was making her grumpy. Hubby thought I was overthinking and made me continue. It took 2 weeks until she was all good. I assume it was just her tummy getting used to it.
So give it some time, who knows it might be the same for them.

Glad to hear the endoscopy is over Kells. Bugger about the horrible car trip! When are you back up again?

We're all good. A few teething wake ups, but both girls are just lovely at the moment.

Hubbies brother is here from Australia tomorrow, which will be nice. But means I should clean the house. But then he is a man, so he probably wouldn't even notice the mess!

Right, darling has just come home with my medicinal ice-cream! Kids at school were horrible today. They are so tired and need a holiday. I spent the whole day tearing my hair out as they wouldn't listen!

Hope you all have good nights.

Suomi-Sorry to hear that the kids are playing up at school. Its so close to the hols its not surprising really. I hope the ice cream worked wonders! Is it the same class that you teach tomorrow? sorry to hear the teeth causing issues HUGS

HK-Grr to internet people grrrrrrrrrr! Jealous about the weather. I am yet amazed about your journey with James was reading about the asthma etc in the other thread! WOW how dare they not listen to you! Thankfully for James you were able to fight for him! HUGS

Where is everyone?????????????

Us-Leo took himself to bed, early tonight hes still not himself. Hes drinking half of his normal day so hoping he will rectify that tomorrow. He seems happy enough which is nice to see. HUGS

ARGHHHHHHHHHHHHHHHH had a big post and just lost it!! Sums up my day really ....

So a quick hi to everyone.

test results - like bri, the girls had died down by this morning. Jess was positive for beef, and question mark for egg. Claire was positive for wheat and potato, and question mark for egg and beef. So been a long confusing day trying to figure out which way's up. I'm coming to the conclusion that the patch testing hasn't really done anything for us as it hasn't shown up reactions we KNOW about - e.g. dairy, soy and celery. So I'm going back to trusting our food diary's. The specialist this afternoon said that the rast tests and patch testing don't pick up all reactions.

Jess has definitely reacted to the maize. She's not eating anything though is at least drinking ok. But nappy rash, hiccups, and the most clingy grizzly child imagineable. :sob: I can't even stand up to pick a toy up, let alone walk away from her!! ARGH!!!!!!!!!!!!!!!!!!!! And the next couple of days are going to be a box of fluffies! NOTTTTTTTTTTTTTTTTTTTTTTTT. Claire though has been great most of the day. Thank goodness ... Last night was pretty crap for Jess, I had to sit up with her for an hour or so .... and tonight probably will be the same, as she didn't settle well tonight

I know we need to do food trials, cause they can't live on lamb and rice .... but I'm just so tired today .... too much driving this week, probably about 6 hours ... doesn't help .... ah well, early to bed tonight and one more day before the weekend ....

Night all ....

Dolphin-I hear you on too much driving, 6 hour for us yesterday it was nuts! Do your girls travel well? Leo used to be great! GRR not so now! GRR! Im sorry to hear you dont find the results overly helpful, do you meet with your allergy paed about them too? IT must make it even harder when the girls cant eat the same things... sending hugs to you. I really hope that the next round of food trials go well. Im dreading ours but know that leo cant go on like he is... Will your girls try new things??? Huge hugs and hope things are better there overnight and tomorrow. HUGS

Made it out last night - so Granny put DS down - and it was ok (ish).

Off to GP today for family update to try and get everything sorted prior to No.2 to get our ducks in a row so everyone is on the same page and I don't end up with an unmedicated and undermedicated refluxer again (figure the allergy/intolerance/reflux part is inevitable - just want faster action this time). Hope he is in a listening mood.

Bri - was going to say re solids - Ian liked his food at that age - but often it would turn him into an angry man - starting with baby rice...his diet was yellow vege only for quite a long time - and we had the same thing for a long time...

To Dolphin and Bri - hope your follow up consults give you more guidance.

Lelo - Ian's comprehension is really coming along which makes things interesting but easier - so hang in there - you have had/continue to have a rough ride. Boot camp has a lot to answer for in terms of not listening to 1st time mums - that place messed with me in terms of becoming so obsessed for volumes and quantities of food.

HK - internet is my lifeline so I hear ya...

Suomi - you school teacher you - roll call was a good idea - I had thearapeutic ice cream last night too at the theatre. Got to make the most of dairy for 2.5 more weeks before going DF

Fi-The more I think about boot camp the MORE i get upset! I feel very damaged from that experience and can only imagine how leo felt! Them saying leo didnt have reflux stopped us getting the help we needed when we needed it! Every time were at Waikato hospital I feel like going over there and chucking leos test results at them! Sounds extreme but I really found it a horrible place! Im sure it works for some just not us! Yah for a night out Let us know how you get on at the gp

Us-Leo is sleeping so well at present! He woke overnight and had a bottle but I think that was more him being hungry as he went back to sleep. HEs retching today and it doesnt seem to matter what it is he eats.. it happens so no wiser :P Anything is bearable with sleep LOL

How is everyone doing today?

Hi. Well after my predictions last night, the girls both slept right through! OMG!! And Jess was a little grizzly this morning, but really perked up by aroun 9am! I wonder if it's cause we gave her her usual rice cake and rice biscuit for breakfast, and she actually ATE it! I wonder if she's been bad the last few mornings cause she hasn't had any breakfast and so her stomach acid levels are higher than normal .... who knows? These kids are a mystery to everyone!

Claire's got a runny nose now, and is coughing herself awake through her lunchtime sleep, but she seems happy enough thank goodness. TGIF!!!! Hubby home tomorrow ALL day!!!! mmmmmmmmm ......

oh crap, she's coughed herself fully awake now .....

Wow all the testing going on this week...woohoo to hopeful answers.
Are the patch testing (ones on back) is that what you got Dolphin) do they prick the skin then place patch over? Am just wondering what to ask my pead for next time we see her which is ages away 22nd May. I am sick of guessing and contining with Charli being so fussy. I am sure she wont eat half the stuff because she has been so limited as an early eater.
Lelo- How did your night go hun. Big hugs again.
HK- How things going with you..sorry havent read back prior pages slack of me i know
Suomi- hugs to you hun....and arhhh to school holidays from today onwards....I am mental thinking of it
Roz- Great to have ya back hun. Always thinking of you

Us- WEll omg could our week get my worse really (probably could but not what i need).
Charli started vomitting sun mid day , stopped 2 hours later, started again monday night, stopped again tues morning. Then Tues night I started, poor DP couldnt do trip to chch as he had to stay and look after kids for me, then last night DP starts up..so he im bed now. Praying to higher being Cam doesn;t get it soon but he would have to be super lucky i think not to get it.
Anyway charli was still grizzly as yesterday so got DP to take her to gp and yes another ear infection, so more blimmin ab's for her. So guess our next step is to get referral back to ENT...arrhhh more money!!! Charlis reflux has been up and down with all this illness but if we keep safe with foods I think it ok in general.She has also stopped drinking much of her neocate(did seperate post on allergy/parenting under 5) so ot sure if her illnesses have done this or if she is telling us sh doesn't want it any more. why is this all so confusing. At least when you have the "normal issues" you kinda know what to expect or where to head. But our special lovelies are in another basket!
Anyway life continues like normal (hahah normal what) here and we just hope for a brighter week or even day soon.
Hugs to all that need it and will promise to read over your posts later. Having much needed quiet time now as charli is sleeping woohoo