Any Ideas pleasseeee..

[june05isttimer]

Hi I am soo sorry to keep adding new threads etc but I am in such a desperate state with my little bub.

Quick run down

She is now 10 weeks old.
At 6 weeks she was diagnosed by pead with a cow milk protein intolorance and put on losec for secondary reflux as well as pepti jnr formula.

Was using losec tablets and dissolving them making sure she got as many granules as possible.

She made no improvements and she was still screaming alot and had an arched neck perm to the side and arched her back alot. She rarely drank more than 40-60mls a bottle also.

She was put into hospital for the last two weeks and was drip fed on Neocate and the losec continued.

We noticed after a few days in hospital her neck was more normal and she was somewhat a little more settled.

We changed only last fri to the suspension form of losec and now I find that if she does actually swallow the dose it seems to get vomited up about an hour or so later as you can smell it.
Two days after we started the suspension and came home her neck has come back being arched to the side and she seems to be in alot of pain..

Does anyone have any experience with the losec in tablet form as opposed to suspension form??????

Also I was wondering if any one elses bub has similar behaviour... I watched her today in her bouncer and although her neck was arched she was happy sitting there then all of a sudden she threw her arms back and held her breath then went red and just started to scream... it took a couple of minutes to calm her down... a few minutes later she did the same thing...
Could this be reflux pain related do you think??????

Can anyone help shed any ideas on the losec or her behaviour???

We have come home from hosp with the nasal tube in still and most feeds go down it as she is almost completely food shy now and won't go near the bottle... if by chance she does she only will take about 40mls and then starts screaming and throwing her self around..

[EsSjAy]

Hi hun...:hugs: to you... There are some excellent WELL INFORMED mummies that may be able to help you out... Bossoflatch, Mrs. Little, Mikenzeesmum to name a few... I'm sure they'll pick this thread up and give the best advice they can....

It definately sounds like bub's is experiencing pain from the reflux...(poor baby) but as i'm not familiar with Losec (my ds is on Zantac and virtually cured) I really cant give advice on it...
Take her back to the doc who addmitted bub's into hospital, or ring the hospital yourself and explain what's going on... As bub was a patient recently they should give you the advice you need and definately head you in the right direction... I found this to be the case with ds when he had a 2 day stay with reflux and i had problems afterwards...

Please hun!! if she's in pain hun and your worried just take bub's back to the hospital...

HUGE :hugs: to you and Bub's... x x.....:fingerscrossed:

[2sweetgirls]

How absoloutly awful for you and your family.

I have been using Losec With my DD now almost 4 months old since she was 6 weeks old also.

I posted a comment before on another thread about how i give my DD her losec in tablet form.

I use a dropper with boiled water in it and slowly add one drop at a time until you notice the tables peel apart them i squash it with my finger to check there are no lumps in it them put the beads on the end of my finger and push them right back in her mouth and sometimes all around in her mouth.... before she was use to this i would do it small amounts at a time.

I founf it way too hard to keep it in her mouth with too much water with it.

Hope i helped.

I have never used the compunded losec either as it is expensive and it can go out of date and loose its effect. and my dd does not take liquid anything very well.

[bossoflatch]

i guess it depends on teh make up of the compound the stronger the mix.. the quicker it looses stability i have found ..

the behaviour you explained about the throwing the arms back and holding breath was what my dd did everyday until her reflux was under control , it seems like she is indeed in pain still .. particulary the screaming.. poor thing .. *hugs*

are only choice is the suspension .. we find it works great.. if we get it from an experienced compounder..that is the trick .

in the beginning my dd would usually vomit up some losec mix usualy 5 - 20 mins later.. it would come back up .. it settle within a few weeks.. it is quite bitter too .. did you get a flavour in it ?

are you still able to use mylanta inbetween / after feeds? sounds liek your lo needs more for the inbetween times whilst they are healing ..
good luck with it all :)

[Nowhere]

hey sorry to her eyour bub not doing well

with the losec compound and her pukeing it just wonderinghave you tried putting it down her tube so that you can get it in past the gag reflex not sure if it would help ir if you have tried it already but just a thought

With the comopound i agree with leisa it can go unstabl very easily and has to be done corectly KWIM, we find that we get 2 weeks out of a comound lucky for us we go though it that quick but ut tends to loose its efectiveness around that time

hows your DD tolerating her tube feeds are you doing continuos feeds at night or all bolus

Also seen as you are useing pepti or neocate do you know that you are elegable for a FREE infinity feeding pump through nutricia, its th feeding pump of all feeding pumps lol its tiny and does not get flow errors like the kanga pump does

Sorry to here your bub is home on tube feeds but at the same time happy that you guys are out of thehospital

[june05isttimer]

hi all

Thought I would update..

We ended up at the royal childrens hospital in brissy and not that this is what i am here to comment on but I have found the state of the resources etc in this place to be appalling.

Anyways bub has had a barium swallow done (organised by our private pead mind you) which has come back as no abnormalities but the did see her reflux on the test which is unusual and shows that there is reflux there even though thats not what the test is designed to show.

We requested to see if her losec dose could be upped to 2 tablets morning and night for a day or two to see if hitting her hard would put a dent in her pain... they did it last night for her but thats it... they still have increased her dosed to 20mg per day which is one tab morning and night..... we will wait out the weekend and see what monday brings...

The dr we have been put under in the public system basically didn't listen to a word i said about her pain symptoms and told me today that its all behaviour related and that she probably isn't in any pain....

I almost hit the guy I was sooo mad... he wouldn't even write up a dose of panadol when the nurse asked for it this morn when my dd was screaming in tears.... I know panodol doesn't really help reflux but the nurse was concerned and said that she seemed in obvious pain from something and that the panodol might have helped calm her down..........

My hubby and I are no better with answers re this but now that she has had many tests and scans done all of which have indicated to be all normal that we can almost put all her pain and lack of feeding orrally to severe or mistreated reflux...

I feel soo sick all the time from stress and sadness as my little girl is in pain still even after all this and to have a consultant tell me this morning that I need to go to a settling sleep clinic for a week nearly sent me over the edge... I could have punched his lights out!!!

She still has the ng tube and has most of her bolus feeds in it as she rarely will take anything orally....

What can I do???????????????????????

[2sweetgirls]

Bump

i have no idea what you can do other than pleading with your pead that you see a gi... I cant understand why you have not already...

Go to your gp and get a referral to one....

:hugs:i am going through "similiar" circumstances here at home, I am sick with stress. And just want some answers also.... :crying:

How absoloutly awful that our young children have to deal with so much pain and the incompitence from docotors is not helping at all.

I think i might move to perth or sydney hehe

[kiwibird27]

Definatly sounds like reflux pain. DD would do exactly the same. Her reflux was very severe and we had (and still) run continuous feeds. She would vomit 2 mls of milk.

They added Zantac to my daughter and that helped too, there are also pro-kinetics that speed up gastric emptying that helped my daughter too, so don't worry your not out of options.

I have always found losec very effective and have always given it to her down her tube, sometimes very slowly, like 5mls over 15 minutes to get it into her. I know u shouldn't use the dissolved tablets down tubes cause it blocks them up really easily!!! I would let the suspension sit in the syringe to warm up to room temp before giving it to her, she was less likely to vomit, and I wouldn't flush the tube, I would do it an hour later when i know it had absorbed. I get 4 weeks of losec suspension at a time, and have had no problems with it.

You should also be able to give gastrogel or mylanta to help give temporary relief to her pain. But ask you doctor, my DD can't have it cause it interfers with her liver medication

Just read your most recent post....did you actually see a registar or the actual consultant???? You can ask to see someone more senior or get a second opinion from another person cause your not happy, You can also ask to see or speak to the patient frind of patient liason officer and be honest, she will tell u what can be done, I have found effective complaining is the best way to get ahead, don't be scared, also talk to your normal paed, maybe he can do something???
You can get refered by your paed to a gastrointerologist then when we turn up at emergency they get paged not the other bad consultant.

Just use the works calmly but assertively"you are extremely concerned that this may cause severe long term damage to your child and u believe it is there duty of care to provide adequate medical treatment, you are so concerned if they are not willing to help then can they refer you to some-one that will, and can you speak with the head of whatever department you are in because u wish to put in a formal complaint, and u are not happy leaving until u do so" See how far that gets u............ Be VERY assertive, don't take no for an answer don't accept any of their excuses, just keep disagreeing if u have to, they cannot make u leave
Good luck

[june05isttimer]

Hi all

Just thought I would update the situation at hand in our house.

I ended up seeking a second opinion at the childrens hospital and happened to get the second top pead at the hospital.

He had a warm caring nature and spoke to me like I was human...

We went through the whole story from beginning to end whilst he held my dd and she spewed everywhere hehehe.

We upped her dose of losec to 30mg a day and she has been a different child since then. The constant screaming has stopped ten fold and the only major issue we have now is that as a result of all the pain she has been in she has developed a complete oral food aversion.

She has a naso gastric tube in in which we feed her most of her feeds. We offer the bottle each feed but she rarely takes it although at times she is at least happy to have the teat in her mouth now which is a small step..

We are now working in with our priv pead who has been through it all with us hopefully we will be monitored alot more closely than we have.

The whole experience has almost broken me soo many times but now that I think we are starting to see the light with her it gives me hope to hang on to.

She is still on neocate also for her gut intolerance.

We even spent a couple of days at the sleep/feeding clinic in brissy here and they discharged us yest as even they couldn't help us in trying to get her to eat!!! Doesn't make me feel any better I suppose though.

Pleading to the world that she eats herself again soon so we can get rid of the tube!

[EsSjAy]

That's great news.... So glad you found someone that has listened and helped little bubba...

Small steps....

Take Care x x

[kiwibird27]

Glad you got some answers. My DD won't eat either, and hasen't done since birth.

When I finally accepted I had a child that didn't eat it was alot easier and now wew just get on with life. When we can finally feed her, we will get speech involved and start again with her.

I know 4 year old kidney patients that have never eaten, that learn again so don't worry. I found it comforting that my DD could live forever on milk. Food isn't important in her life!!! Could be worse, at least she tolerates milk!!!

[taniabyrnes]

not sure if this is relevant or not, but I know someone who had similar problems with her bub not wanting to feed orally. It ended up being a problem with her soft pallette not being fully formed. Every time she fed, the poor thing almost drowned, the milk was going down the wrong tube. If not already, I would make sure someone actually tests to make sure there are no physical reasons as to why she doesn't like drinking milk. I know my friend had to push and push and push for them to look into this. Just a thought. Good luck.

[june05isttimer]

Thankyou for all your replies on this so far.

I know ppl are having worse times than this but I have and am still so stressed out with this situtation.

I am pretty sure there is no probs with her mouth. She has had 3 peads look at her as well as a speech pathologist and all say she is fine and even her suck swallow reflex is fine when she actually does drink.

The prob we are having now is that she keeps pulling the naso gastric tube out of her nose all the time despite it being taped completely.

She woke in the middle of the night last night and the whole thing was off her face and out of her nose.

We called to get it replaced this morn and the nurse was soo annoyed as she only replaced it for me yesterday.

Its so hard as she is now getting older that she hates being wrapped and gets her hands out which is what is causing the prob.

The hide of the nurse though.. its not exactly the ideal situation we want to live with with a child with a nasal tube for feeding but that is our life at the moment as without it she will die as she won't take the bottle at all most times and if she does she will only take about 40-60mls before cracking it. Once you stop she is happy again.

I believe it seems to be totally behavioural with her feeding habits now and I think they are not going to be broken the way we are going.

I just don't know what else to do. We see our pead again tomorrow and I just don't know what else to try or say or see........

[kiwibird27]

My daughter was at home for months and months on NG feeds, the hospital taught me how to replace it myself...They gave me all the tape etc to do it, . After u do it a few times it's no problem...Just have to b sure to test its in the right spot...DD was on Losec so the tester strips would always be green instead of pink, so I would put down 1 ml of water, If she coughed (never did) I knew it was in the wrong spot. It's crazy to have to keep going back!!!!

[Nowhere]

hugs darl i agree NG tubes SUCk mikenzee had one for like 12 months and i hated the dam thing

Its irelelavent what others are going through weahter there worse or batter so what what is important to you right now is your child and no one elses, you ahve every right to be upset stressed angry or what ever so big hugs to you


have you talked to the drs about if tube feeding is going to be a long term thing if it is perhaps talk to them about a gastrostomy ( its a tube directly into the tummy) yes its an operation but its gets rid of the NG tube wich is famous for making oral aversion worse

check out this web site there is loads of us tube feeding mums on there we all know how you feel

HUGS TO YOU

WWW.infantrefluxdisease.com