Here I go again !!!!

[reAllytee]

I have spent today in tears ... Not that unusual for me but all because of Squeak.

His pain has been slowly getting worse & worse even since starting the Losec.

I have also noticed that within 30mins of his having it he is screaming.

The last 3 days have seen him just unbearably uncomfortable screaming & arching for hours. Today was 2hrs straight :(

Im trying everything i can think of to help him .... I even put him back onto Zantac 3 times a day yet this hasnt even helped.

I feel like every time we seem to take one step forward we are taking 5 back !

What do i do ?????? Im almost tempted to go to the RCH is he is bad again tomorrow & demand they help us.

I am ready to throw in the towel :crying:

[TJ]

I cant offer any advice Ally, but I do think there are serious issues going on here. This has been going on FAR too long. Trust you gut instinct, you have been saying all along that things are not right. Head to the hospital first thing tomorrow morning, I would say now, but you are better off both trying to get some sleep first.
Something NEEDS to be done, what you are both going through is NOT normal, and things are only temporarily getting better if at all.

STAND YOUR GROUND TOMORROW, and demand SOMETHING be done. :hugs:

[Nowhere]

HUGS I have no advice for you im sorry you are dealing with this i know nhow much is sucks, i hope they figure him out soon

Is it time to see a pead gastrointeroligist, to get some tests done reflux can often be an out ward sign of another GI disorder KWIM, I would start DEMANDING a referal

HUGS HUGS HUGS HUGS HUGS

[reAllytee]

Blah another horrible day & im even more confused now cause all day he had horribly explosive poos that were even watery .... Maybe a tummy bug ?

Will be calling the Paed tomorrow cause i couldnt get to the hospy today due to other dramas.

I dunno anymore.

[Nowhere]

hugs darl

Hopefuly todays flair up anf ferrel poo is a tummy bug and nothing more sinister and lets hope only a short one and will feel better soon

:hugs::hugs::hugs::hugs::hugs::hugs:

[kiwibird27]

All I can say is PAED GI, and giant hugs, it all sucks

[kiwibird27]

There is at least a 3 - 6 mnth wait even for private rooms, make the appointment , get the referall later....even from your GP

[furkids]

I agree with kiwibird allyoo - make an appt with paed gi and then get a referral. It took us 3 months to get in and that was even with us on the cancellation list.

And tell the receptionist what his symptoms are AND send a letter through with your referral detailing symptoms (especially the fact that he is on Neocate and still suffering problems). It can help keep you in their mind and helps speed up appt.

If you are in Melbourne, PM and I can give you the name of a female paed gi who is easier to get into. But she is in suburbs not city centre.

Edited to add: I wish I'd been told about her in the first place coz we would have only had to wait 4 weeks tops.

[reAllytee]

**** BANGS HEAD REPEATEDLY ****

I HATE THIS !!!!!!!!!!!!!!!!!

Sorry just needed to get it out !

I cant get in to see our Paed until the 1st April cause he is flat chat full as well as hospy bookings *blah* .... Im on the cancellation list but FFS ALREADY !!!!!!!!!!!

[bossoflatch]

r.............................

[kiwibird27]

Ask him wot Paed GI he will refer u too and make the appointment now, Jackson is booked out totally till July, appointment now, referall later. Your GP can write the referall!!

[reAllytee]

Yep im about to make the appt for Jackson, Stacey ! I dont care anymore i will get the referral later whether it be from g.p or the Paed.



reflux is terrible isnt it *hugs*

i would take him to the ed when he is screamign like this.. it 'could' get you into a gi much quicker

dd was terrible too ..

hmm we see Dr hiene at the royal childrens in melb .. infact we moved down here to get under him .. as dd is so complicated we heard he was one of the 'best' if you are in melb ;)


he is great. he is an allergiest and GI .. so very helpful especially if you little one is already on neocate..

tbh .we found neocate wasn't that great.. my dd does much better on elecare.. not sure why it has similiar make up but she is thriving on just elecare atm ? Having said that though . it can take 6 weeks to get food protein out of the babies gut.. so in that time .. he shouldnt be getting worse .. but should be seeing alittle improvement as the weeks go by?

also how long has your lo been on losec as it can take up to two weeks to see the full effect of the losec..

also depending on whats causing your lo so much pain .. if you have the zantac syprup this can make them worse not better.. its some thign to do with the peppermint in the syrup .. it can flair very sensitive bubs up .. i know with my dd she was terrible on the syrup but heaps better on the tablets


there are just so many contributing factors that can be causign all the pain . im so so sorry you have to got thru it . it is terrible isnt it .. i read in another post .?about the stools. have they improved now too ?

take care hun .. pm if you eva wanna chat.. hugs

It isnt just his reflux it seems ... Oh bugger i dont know anymore !

He changed from Neocate to Elecare ummm what 7wks ago or so ????

His poo's are revolting & getting worse its all going backwards !!!! This is what we went through before !!!!

He is poo'ing up to 8 times a day & they are vile runny mucousy stringy things. His nappy rash is soooo bad yesterday i freaked cause there was blood in the nappy. His skin is all broken & raw yet im doing all i can to protect it *sigh*

We cut out the Zantac because the Paed advised if the Losec was working then to reduce it which i did to him screaming more & more. So I started it back up again only once a day but it seems to help iykwim.

He has been on Losec now for ummmm 3wks & he screams everytime he has it ... It is a little better now but he is still grumpy.

Bah !

[bossoflatch]

......................

[reAllytee]

Ok after turning into a blubbering mess on the phone to a friend she came & got me so we could see another :rolleyes: doctor lol.

Gotta love friends who not only understand & are caring but are also understanding in all these problems !!!!

I seriously thought it was a waste of time because yet again it seemed like i wasnt being listened to as all he kept referring back to was " my teething baby " ... I KNOW HE IS TEETHING MATE HE HAS BEEN FOR 3MTHS NOW :hair: But then he did ask a few questions & the next thing was on the phone to the Paed saying he needed to be seen immediately :smiliedance:

So was told to come in & we arrived 30mins later !

Then that visit almost turned into a disaster too because he was getting cranky with me cause i couldnt explain myself well enough & was getting flustered. 3hrs sleep does that to you !!!!! So of course absolutely lost it & he then realised how desperate i was & started listening & asking the proper questions. All this while writing something out which had me intrigued & was then handed it ... Works out to be a special note thingy for whenever i need it for the hospital so that im not stuffed around by them ... Couldve kissed him !

Anyways he confirmed that he is reacting to the Losec & its probably also a case of his reacting to Zantac also even though it 'helps' at times. We are also testing to make sure the poo isnt the way it is from say a bug or the likes. So will be back next week after that test & giving him a week without reflux meds then we go from there as to see whther the probs are caused by the meds & whether the reflux gets too bad which means trying something else blah !

I have an appt with Dr R Jackson the gastro ... In Sept :rolleyes: but am on the emergency list because my wonderful friend knows them so well ... Aaah to have friends with benefits :laughing: Otherwise if it gets desperate i will go through the Outpatients clinic.

**** .... Seriously how allergic can a child really be :(

[bossoflatch]

well done on getting this far.. :hugs:

but children can be this allergic.. as amy will tell you im sure there are kids out there.. my dd was clinically dx with gi mastocytosis.. and still trying to rule out eosinphilic eosophagitus.. which again is another allergic reaction .. dd cant eat any foods.. she is 14 months and her diet consists wholly of elecare (we keep doing food trials and she keeps failing ) we are back to see the immunoligist tomorrow *sigh*


she screams all night long.. her stools are getting better on elecare but what you described was her for so long.. she would get allergic rhinitus and sinus infections every few weeks.. infact we are just recovering from a food trial of corn and she has another sinus infection now from rhinitus.. (she has already failed. wheat, soy , diary , rice, egg products and most vegies )
and we wont be trying much more now..

can i suggest that you keep a diary of things that your lo reacts to and how .. ? i imagine you havent tried him on the solids yet.. ? but if you do take it very slowly and document everything.. !!

best of luck with it all

[Js Mum]

We are on the 4th different type of medicne to get my bub sorted - finally found he does OK on Zoton in the suspension (solution) form, but it makes him constipated so I also have to force feed him prune juice (it was either that or suppositories - he is too young for laxatives)

He's 13 wks now and I thought things were going well - it took about 4 or 5 weeks for the meds to build up enough to give him the 12 hr coverage (I give him the full dose twice a day) and about 4 weeks to teach him that he can settle himself and that sleeping lying down does not mean pain and then the stupid expletive Pharmacist gives me a batch of off meds - really angry about this as I asked 3 times!!! It was only on the 3rd time (by which time the meds had turned a caramel colour) they admitted it and mixed me some new stufff, but too late as all residual meds were out of his system and we are back to square one - possibly worse as he now knows all my tricks to get him to sleep.

Didn;t even get an apology...

I now go to a different pharmacist that also mixes it up (it's and extra 30 min drive, but...) AND the meds are $14 a bottle cheaper (go figure)

So now we are back at the stage where he wont feed properly - may suckle for 5 minutes max, so instead of feed-play-sleep, it f-p-f-p-f-s with a whole bunch of screaming in between - I even have to resort to feeding him with a syringe to get him to take anything - and there is nothing I can do...

The only thing that seems to help (albeit marginally) is a colic med called Infants Friend - and it's natural and safe to give to them with all their other reflux meds.

[reAllytee]

well done on getting this far.. :hugs:

but children can be this allergic.. as amy will tell you im sure there are kids out there.. my dd was clinically dx with gi mastocytosis.. and still trying to rule out eosinphilic eosophagitus.. which again is another allergic reaction .. dd cant eat any foods.. she is 14 months and her diet consists wholly of elecare (we keep doing food trials and she keeps failing ) we are back to see the immunoligist tomorrow *sigh*


she screams all night long.. her stools are getting better on elecare but what you described was her for so long.. she would get allergic rhinitus and sinus infections every few weeks.. infact we are just recovering from a food trial of corn and she has another sinus infection now from rhinitus.. (she has already failed. wheat, soy , diary , rice, egg products and most vegies )
and we wont be trying much more now..

can i suggest that you keep a diary of things that your lo reacts to and how .. ? i imagine you havent tried him on the solids yet.. ? but if you do take it very slowly and document everything.. !!

best of luck with it all

I dont know how you all do it :hugs:

I know we have no choice but seriously !!!!

I was keeping a diary but put it somewhere 'safe' & now cant find it !!!! :o

Have started a new one as of today & will try to go back through memory & work out some notes so i have it all for the GI.

Oh we tried him on solids & it was a complete nightmare !!! We waited until he was 6.5mths then trialled some rice cereal which resulted in him losing the plot, screaming, crying, refusing to sleep all with obvious tummy pain & this was within an hour of him having it. So took him off that then trialed the next least allergenic sweet potato .... That was like WOW ! At first no probs but he was a little unsettled i just kept thinking " bad day yanno ! " the following morning he spewed so bad he put The Exorcist to shame. I was covered from the waist down, he was saturated it was all over the bed & floor as well as in my crocs !!!!! So yep we stopped lol.

We arent to re-challenge him until he is 10mths but seriously with things being like this i want to wait till 12mths its only a few extra weeks so whats the difference !

Now that he seems to be reacting to the Losec & Zantac i really want to know whats in them for future with other meds. Im now also glad i held off vax's after he seemed to react with those ... My gut was right !

Ive been told we will need to see an allergist or the likes if when he is re-challenged he reacts again but at this point im feeling like next week if its proven he has no tummy bug i will demand to see one immediately ... May be a waste of time but im worried !



We are on the 4th different type of medicne to get my bub sorted - finally found he does OK on Zoton in the suspension (solution) form, but it makes him constipated so I also have to force feed him prune juice (it was either that or suppositories - he is too young for laxatives)

He's 13 wks now and I thought things were going well - it took about 4 or 5 weeks for the meds to build up enough to give him the 12 hr coverage (I give him the full dose twice a day) and about 4 weeks to teach him that he can settle himself and that sleeping lying down does not mean pain and then the stupid expletive Pharmacist gives me a batch of off meds - really angry about this as I asked 3 times!!! It was only on the 3rd time (by which time the meds had turned a caramel colour) they admitted it and mixed me some new stufff, but too late as all residual meds were out of his system and we are back to square one - possibly worse as he now knows all my tricks to get him to sleep.

Didn;t even get an apology...

I now go to a different pharmacist that also mixes it up (it's and extra 30 min drive, but...) AND the meds are $14 a bottle cheaper (go figure)

So now we are back at the stage where he wont feed properly - may suckle for 5 minutes max, so instead of feed-play-sleep, it f-p-f-p-f-s with a whole bunch of screaming in between - I even have to resort to feeding him with a syringe to get him to take anything - and there is nothing I can do...

The only thing that seems to help (albeit marginally) is a colic med called Infants Friend - and it's natural and safe to give to them with all their other reflux meds.


Oh you poor thing :hugs:

Dont you love it when Pharmacists are helpful like Doctors yet we seem to know more than them :rolleyes:

I too often have to syringe feed my munchkin :hugs: Tis the only way to get it into him sadly !

[bossoflatch]

all...........