reflux - formula - poos

[bossoflatch]

Hi - where do i start???
my bubs is 6 weeks old and was diagnosed with silent reflux at 4 week check up - she was screaming constantly after feeds - as if in pain - i though it was not enough milk - but pead said no - reflux - she is not a chucky baby - a little tiny spill - every now and then - (mind you she is breast feed - was trying to give her formula - as she wasn't gaining weight - tried her on s26 only to be all brought back up again hence doctor said to change to ar formula ). when we saw the pead - she hadn't gained more than 110 grams since birth - so he gave me medication for milk supply - milk supply went down coz she would only feed for five mins - but every 1 or so - and then she would be on every hour coz she was always on the breast - whilst on the meds - he said give her 30mls of formula after a breast feed to get her weight up - so we have been giving her a scoop of karicare ha ar formula ( one scoop makes 50mls ) - which she usually takes between 20-50mls (mind you some times after the feeds now she wont want any- ).

my problem is that she only does one bowel motion a day now - which in it self isn't a problem - but it is really runny and mustard yellow (same colour as her poos before this - it just has a more milky consistency now than curdled milk ) but my problem is it spills from the nappy - there is soo much of it that we can't go out when she is due - she usually does it after the midday feed - sometime between midday and 4pm... there is just soo much of it that it runs out the nappy and i have tried to contain it with a cloth nappy but there really is just so much - does this mean she doesn't need the formula anymore - is she getting to much formula - too much breast milk - or too much milk in general ... (she is gaing about 150-200 grams a week now but i have to check this weeks weight gain today )
i just don't know whether she is doing soo much coz it is once a day - or whether she just doesn't need it ...
the main reason we are still giving the formula was because she was still bringing up a little breast milk and the little bit of formula seemed to settle the crankyness ( when she is really cranky she has an acidic smell on her breath.... so we give her the formula after the feed to stop the reflux ) someone said we can give her a thickener to help with keeping the breastmilk down?? is there such a thing?

yesterday - the pead gave her zantac to have three times a day .... just started this yesterday (i forgot to ask him about the poos ) and she has been on mylanta for the last two weeks - which has helped to settle her at the time - but it doesn't last....

also - everynight after her pm feed - about 7.30 - 9pm she is really unsettled not crying just very cranky (not colicky) she screws her face up as if she is chewing on something bad - which i can only imagine being the the reflux... we sit her up and she gets really tired but she wont settle until after about 2 hours - when she does finally get to sleep she sleeps anywhere from 6 - 8 (usually the 8 hours ) and wakes quite happily for a feed and will then usually go straight back to sleep for another 2-3 hours... it is just getting her to sleep in the early night when she is very unsettled with the reflux - will the zantac help with this when it starts working more in the next few days???

during the morning feeds i don't give her any formula as she is good with the reflux - she doesn't bring any up and she settles to sleep at the first feed - it is during the day that she is more unsettled and sometimes looking for the formula...
just not sure what i am doing wrong...

i am just not sure what i need to be doing with her ...
i am sure this is quite jumble and i apologise ...
leisa

[RISA]

Hi Leisa,
Thanks for contacting our organisation, and congratulations on the birth of your beautiful daughter. First of all, I wanted to say that there is no need at all to apologise. I’m a reflux mum too, and I know how confusing it all is. It is such a STEEP learning curve and as mums, we tend to put a lot of pressure on ourselves. I think in part that is because most people seem to think reflux isn’t much of a big deal, and they expect us to cope- so then we think we should be able to do this, if that makes sense! – and then we feel bad if we can’t figure it out straight away!!

The reality though, is reflux can be very confusing, and nobody will have the answer because they are all different. What works for one child may not work for another, so the best anyone can do is offer suggestions, and it is then a matter of trial and error on your part until you figure out what works best for your own child. Please try not to be too hard on yourself as you try to figure it all out for your child.

It sounds like your paed is very much on the ball to have picked up on her reflux so quickly, which is fantastic to hear. Reflux can be quite tough to diagnose, especially the type that is called ‘silent’ reflux (what a misnomer as silence is NOT one of the symptoms!!). What it means is they generally don’t vomit with their reflux, so it can be more difficult to recognise.

Having said that, you are doing a great job of recognising when she is refluxing- when she has acid breath, when she screws up her face, when she is cranky and won’t settle, when she is feeding so frequently- so that is also good. It might help if I explain a little bit about her ‘comfort’ feeding, which is what it is called when they want to have little drinks so frequently (eg every hour)- so it makes a bit of sense to you. Some refluxers learn to do this as a way of soothing their tummy. My son also did this and it’s quite common (though some go the other way and refuse to feed). What she has figured out, is that when she is feeding, it is really soothing, as breastmilk in particular works as an antacid. Trouble is, by feeding so often, it doesn’t give her tummy a chance to settle. Apparently the stomach is most active about an hour after a feed, and is the time when she would be most actively digesting her feed. This then is also the time that she is likely to be refluxing most because she has a full tummy, there is lots of acid there and she is digesting- hence reflux. What she has learnt is that if she feeds, it feels better, so she demands a feed. The problem is that sets up a cycle of wanting to feed again in the next hour, and her tummy never empties. I know from experience that is a hard cycle to break too, but it really can help if you can try to get her into some kind of routine. Being on medication should help with that too.

I wonder if that’s also the reason for her poos. I wonder if she is getting a lot of your foremilk, as she feeds so often, and doesn’t get as much of your hindmilk. The foremilk has more lactose in it, and isn’t quite as filling either as the hindmilk. Perhaps as a result of that, plus the small amount of thickened formula she has, combines to get what you get? I wonder if it would help if you expressed 20 or 30ml off first, before offering her the breast, just to see if that makes any difference to her. Just an idea.

Regarding what someone said about giving a thickener to keep the breastmilk down- that is what you are doing already with the formula following a breastfeed. You are using a thickened formula, and it’s pretty much what we would recommend if you wanted to try thickened feeds anyway. There is a variety of ways to thicken feeds, but perhaps this person meant that it’s possible for you to express and to thicken all your breastmilk, and feed it to her from a bottle (you can use products like Infant Gaviscon, or Karicare food thickener for that). That may not be necessary as it sounds like offering her the thickened formula following a feed is quite effective already. As you may have realised, lots of people do offer advice, but it is really important for you to follow your instincts. If this idea sounds like something you would like to try, and you are comfortable with it, then it may be worth giving it a go, but at the same time, if you would rather not try it, that’s fine too. As I said before, they are all different, so thickening your entire feed may or may not help. It’s up to you to figure out if it’s something you want to try- or not.

I know we can start to lose confidence in our ability, and find it tough to listen to our own instincts. I felt like such a failure, so it was easy to start listening to what everyone else was telling me- but trouble with that, is they all seem to have conflicting ideas. Someone will say you have to pick them up when they cry, and someone else will say you should let them cry it out. It’s important you do what feels right (and that you do what works!!)

The Zantac should start to help with her unsettledness at night- it can sometimes take a week or so to kick in though for some it’s much quicker, and should also help to sort out her feeds and help get her into more of a routine. Did the paed let you know that Zantac is a weight related medication? - meaning that as she puts on weight, the dose of Zantac may need to be increased to keep up as the dose is worked out /kg.

From everything you have said, it doesn’t sound as though you are doing anything wrong. You are simply doing your best, with the information you have, and there is definitely nothing wrong with that. It sounds like you are doing a really good job, to be honest, and reflux can be a terribly difficult condition to cope with.

You can always talk to your paed again, or GP, about her poos, if they continue to be of concern. Most doctors are fine if you call them and they can return your call when it is convenient. I always hated it if I came out of an appt and had forgotten to ask one of the things I had gone in for!! I started writing a list after I had done that a few times, which made it much easier for me.

Anyway, sorry for the lengthy reply, but I hope some of that information helps. I hope you find the Zantac helps sooner rather than later, but if you find it isn’t quite controlling her reflux, please don’t hesitate to talk to your paed or GP once again. Sometimes it can take a little while to get the right dose, medication or combination of each, and even that is trial and error too.

Glenda

[bossoflatch]

thanks Glenda

you have been able to make sense of things for me - what you said about the comfort feeding makes a whole lot of sense and it is on par with what bubs is doing -

and i will give the expressing a go - as you said i need to get a routine and things should slip into place with the feeds :fingerscrossed:

i didn't know that the zantac was weight related - so i guess i will have to keep up on that too.


thanks again for your input - i will have to read this again to inprint it into my brain so i know what i am doing ... :)

thanks
leisa

[RISA]

Hi Leisa,
I hope you find something that helps, and I'm glad I was able to make sense of things for you. Getting that routine going can be tough work, but hopefully with the aid of Zantac, it will be a lot easier.

Glenda

[bossoflatch]

i was following up on the thickeners overnight - can i add gaviscon infant to breast milk and then give that to her in the bottle ???

also - she had her last feed at 8.30 and she didn't go to sleep until12 am - she is still asleep now at 7-45 am but she is so unsettle from 8-30 -midnight - she doesn't cry too much she just wants to be upright and i fed her at 8ish - and then she was unsettled at 9pm gave the mylanta then and she was unsettled at at 10.40 and wouldn't settle so i gave in and she had a comfort feed :) she was a little chuchky (very little bits ) and 'chewie' wouldn't let us lie her down (not that i blame her ) and then she fell asleep exhausted just after 12 am....

i wondered at first whether her clock was just out of wack but i kept her awake at the 4 oclock feed for this reason... and she only went to sleep at 6.30ish until 8 - so she really only had a nap - nothing long enough to keep her awake at 8..

any thoughts
leisa

[RISA]

Hi Leisa,
It can be soo hard to know what to do. I would be careful using Infant Gaviscon as well as the thickener in the formula-even though she is only having a small amount of AR formula. That could make her feed way too thick, and difficult to digest as well, so you may be better off doing one or the other. Sorry, i should have been more clear about that.

I don't honestly know what the answer to the issue is- whether Zantac will be, or whether you will need to make some changes with the thickener, even to take dairy out of her diet, or something else entirely. Just be careful not to make too many changes at the same time- if something works, you then have to try to figure out what helped, what didn't, and if it was a combination that did it. Because of that, it's generally better to only make one change at a time.

Just remember to follow your instincts, and also to look after yourself as well. I hope you find the answers you need, and i hope the Zantac makes a difference to her soon

HTH
Glenda

[bossoflatch]

sorry to be a pain - i bought some karicare thickener today - i had a bottle of express milk from this morning and so i added that to her milk tonight instead of physically breast feeding her she has taken it quite well and seems to be sleeping now - not sure how long :fingerscrossed: being the first bottle - i mean i don't know whether she will be down for four hours or her usual 8 hours ... :thumbsup:

but giving her the karicare thickener - does that mean i have to express all my feeds as it states to give in a bottle of ebm or to give it in the gel form but earlier this afternoon i feed her at 3.30 and she was a little unsettled so i gave her 20mls of ebm and a scoop of the thickener (following instructions on the tin ) well actually she only managed a minute amount - there was alot there for a 6 week old - i would prefer to physically breast feed her and then give her the gel /paste solution of karicare after but she is so little - i can't imagine that she would actually take that much as it made up heaps and she is still learning to breast feed - let alone trying to learn to swallow a thicker paste - but the little amount she did take was not enough to settle her ... i also had to give her mylanta as she was still really acidic smelling...

any thoughts ???
leisa

i really don't want to have to give up breast feeding her - as i had to stop early with my boys and i got really bad pnd which lasted for ages turning in severe depression !!! this is why i really am trying to be patient with this and trying to find a solution ..!!!

but i am just not sure what i can do with this thickener ..

tia
leisa

[RISA]

Hi Leisa,
You are most definitely NOT a pain. It is so confusing, and it's better to ask lots of questions- that way you can work out what you think will be best for you! Having options does that.

I agree it is best to continue breastfeeding too, and also that it's important for you to do what feels right for you. OFten just a spoon of thickener can be enough, so if you would prefer to do that, just give that a go. Perhaps there will be times it is more effective, and other times not. That's where trial and error comes in to play. I wonder if it would work better before a feed rather than after? Did she have a good night after that, or was it not so great? Sometimes thickened feeds aren't the answer, and while she fed well and went to sleep, it will be interesting to see if taht continued through the night. If it did help today and she seems more settled, then may be its an option to gve her a bottle of thickened ebm at night- just once a day, with her breastfeeding from you the remainder of the feeds.

Could it be that a cows milk protein sensitivity may be contributing as well? That is often a problem for reflux children, though not always of course.

Alternatively, perhaps medication would help too. There are still so many options, so I hope you find something that works for her, and that you are comfortable with. I wish I could give you a definitive answer, but they are all so very different, and it never seems to be that easy.

Please stay in touch with your doctor, and let them know your concerns. Perhaps they will be able to offer something as well.

HTH
Glenda

[bossoflatch]

thanks for all your help and suggestions-

yes Tayla slept beautifully last night - i gave her the thickened ebm at 7.30ish and she was a little unsettled when i went to put her in the cot about 8.30 (after a poo and bath) so i gave her one side and she went to slep then .. until 4.30 this morning...
This morning she woke had a feed and went straight back to sleep until 8.30 when she feed again and stayed awake until 9.30 went to slept with a little help from mylanta and we started the process again... she has been great today - god bless her!!!

i just am curious - she is happy and during the day feed i am breastfeeding her and then giving her about 30mls of ebm with about 1/3 scoop of the thickener and she is very content with that - i go to put her in her basinett and she is unsettled so i have been giving her mylanta and she drifts off to sleep - is it okay to give her the mylanta about 1/2 hour after food like that.. on top of the thickener ???

i think i might finally be getting somewhere - the only time she has been really crying is when she ahd a stomach full of wind.. :) soooo thank you soooo much

leisa

[RISA]

Hi Leisa,
YEAY!! That sounds very positive, so it looks like you are getting somewhere.

My philosophy with reflux, is you do what works, and what you feel comfortable with. It sounds great that some Mylanta at that time to help her sleep is working so well, and I don't think there is any problem with giving it like that. You have to be careful about giving Mylanta near other medications, but if you do have concerns, it's best to check with your pharmacist, just to make sure.

If you find she needs to take Mylanta regularly, it may be better to talk to your doctor about prescribing Zantac or Losec, or something like that? If antacids are needed regularly, they seem to prefer to use them routinely, which will give better control of her reflux throughout the day.

I am so pleased things are looking up, and if we can help in any other way, please let us know, :)

Glenda

[bossoflatch]

hi again -

we went to the peadiatrician on friday for her check up and he wasn't happy with her progress on zantac as he saw how unsettled and upset she gets during the day.. he was confident that it wasn't the witching hour ( i had rang him during the week concerned that she was getting worse as she was screaming constantly and even waking up screaming and not settling back to sleep - mainly in the afternoon - which is why he thought the witching hour??) he suggested to increase her zantac which we did for a few days but she was still getting very upset !!!


so he put her on the losec - but she has gotten really bad - her last dose of zantac was friday night and she started losec yeserday - she has been constantly screaming - wont sleep today - slept last night for about 7 hours (she usually sleeps about 9- 11 hours overnight ) and she wont sleep today - she gets to sleep only to be woken with screaming which we can't settle ....

she just brought up a little milk about an hour ago - i'd say less than five mls - and it really smelt bad - very acidic - and she did a poo about half hour ago - has settled somewhat after doing the 'dirty' but now has the hiccups - which she is still very acidic smelling - we have tried the mylanta - but it isn't working and even (dr recommened giving her 50mls of reflux formula inbetween feeds if she was unsettled ) and she is just so upset....

we have tried the upright postitions, warm baths, soothing & settling techniques - she just gets so worked up and we wonder if there is anything else we can do in the meantime whilst the losec kicks in - dr said it will take to about wednesday - if not to ring him - i just didn't expect her to get this bad in the meantime...

thanks again
leisa

[RISA]

Hi Leisa,
Did he say anything about keeping her on Zantac until the Losec kicked in? Sometimes it can take a couple of weeks before it builds up enough in their system and starts to make a difference, so some children benefit if Zantac is continued in the meantime. Otherwise, it may have had some effect, and the end result for her is she has nothing that is helping just yet until the Losec has a chance to kick in.

Did he tell you to continue using it, or specifically stop using the Zantac now? I wonder if he mentioned it at all. Are you still giving her Mylanta as often? While the Losec may mean, if it is working really well, that she may not need Mylanta much, if at all, in this period of time, perhaps she still needs it. Has he given you specific instructions about Mylanta? Sometimes doctors will tell parents to give a double dose- a second dose about 10 minutes after the first, as that can sometimes be far more effective, but it all depends on what your instructions on it are. If you have a maximum amount you can't give more than, you may be able to work out the doses like that, but if he has told you to give it no less than a particular time frame, you would need to ask him about that to make sure.

She certainly sounds in a lot of discomfort so I would pursue it. It sounds like you are doing everything right too. I would contnue to keep holding her upright, keep her with you, in a sling perhaps or something, but if she is comforted more by being close to you, then i would encourage that, ensure she isn't overfeeding to avoid reflux, and keep everything loose around her waist- basically, ensure you are doing all those things taht are recommended initially, and try to keep things as calm and peaceful as possible. Use distractions if they work, and if things don't settle, definitely get in touch with your dr sooner rather than later. She sounds too distressed to leave it until Wednesday at this rate.

Hope that helps

Glenda

[bossoflatch]

firstly - the dr specifically said not to give her both the losec and the zantac - only to give her mylanta if needed.

after starting on the losec on saturday we have seen improvement in her - she is alot happier after feeds and she sometimes feeds a long time on the breast... however, she is really upset when she has to move her bowels..yesterday she was very upset for about 2 hours before hand - she finally moved them and she was alot more settled and was able to get to sleep during the day...

last night though we started to feed her about 7.30ish and then started her sleep routine - she didn't get to sleep until 12.30 am..... she was up all this time very chucky - very acidic and her saliva was very 'bubbly' she is not a chucky baby as such - she was screaming in a lot of pain and she would get to sleep ( with lots of cuddles of course ) and than wake within 10 mins of being put down - and start screaming again - she slept all night in the baby pouch (poor hubby!!!) but we have never seen her that bad...

could it be from the losec??? the only other thing i can think of is i had maccaroni cheese for lunch yesterday - could it be an intolerance to either the dairy or the wheat with the pasta????

i don't want to have to put her thru that pain again to find out which ...

i just don't know what to do with her at the moment -

[RISA]

Hi Leisa,
Okay, so no Zantac at the moment for her, but if things don't settle down, I would contact the paed to let him know what's going on. I'm not sure why she can't have both Zantac and Losec at the same time, so that may also be worth asking if she is still distressed. It's possible it's the gap between being on Zantac and the Losec getting into her system, and if so, should settle down fairly quickly (let's hope anyway).

It is definitely possible the macaroni cheese had something to do with her distress, and it could be the dairy, wheat or both unfortunately. Goodness, another difficult one to figure out, sorry.

It is also possible it is the Losec as well- it would be unusual for her to react like that, but it can happen (once again they are all different). Did you use a capsule or suspension? If it was the suspension, it may be worth checking to see what they added to the suspension (sometimes whey protein is added, which is a milk derivative- if cows milk is a problem, then this may be contributing too)

I really hope things settle down, and she feels more comfortable soon, but if not, please let the doctor know. Sorry I can't be of more help.

Glenda

[bossoflatch]

i just wanted to let you know that Tayla has settled and is a totally different baby at the moment - touch wood - i am sure i jinxed myself ...lol

the losec has seemed to settle her tremendously !!! she is sleeping during the day -- and even settling herself ... :smiliedance:

i just wanted to say thank you very much for your help and reassurance ... having yourself to tell me it was going to be okay and things would get better was i think at times - very much what i needed to hear... so again thank you !!!

but i do have one question come to think of it - the zantac was weight controlled - is the losec dependent on weight ??? it is working great now - but do we have to increase it as time goes by???

leisa

[RISA]

Hi Leisa,
:smiliedance: That is fantastic to hear, and I am glad that the Losec has made so much difference.

I'm also pleased to hear that I was able to help, and don't forget the great job you have done/are doing! You have been there for her when she needed it most and gotten her the help she needed, so don't forget that. Even the times that were the worst, so be proud.

In answer to your question, no, Losec isn't a weight related medication, but there may be times that the dr may consider increasing it. Reflux can flare at times when she is going through stress, and it can help if you recall that- some days may be better than others as you know, but sometimes bubs need to have their medication increased for a while when they are teething, are sick, have had vaccinations, are out of routine or overtired. Even crawling can make things worse, so if you are ever concerned, please seek medical guidance.
I hope it is smooth sailing from here though, but now you know you can trust your instincts, no matter how much you doubt yourself.

Glenda :wave:

[bossoflatch]

so it seems that the losec seems to be working - but sometimes during the day - i still have to give her mylanta - firstly is this okay to do??? i have heard that they can have a higher dose of losec? i just dont' kow whether that is what she needs or just stick with the mylanta - she is starting to get a little unsettled after lunchtime (early afternoon till early evening..) again - and starting to smell acidic again - other than that the losec has been doing the job great ... ??? just wondering ifyou have any thoughts on this??

leisa

[RISA]

Hi Leisa,

It should be fine to give Mylanta occasionally (though check to see if your doctor is okay with that) If you have to do that more than occasionally, he may wish to increase the dose too, of Losec, I mean. Make sure that you are leaving a good hour between the 2 different medications as Mylanta can affect the absorption of some medications. Please get advice on giving it though.

When are you giving her the Losec? If it's once a day, you might want to look at asking the dr about giving it twice a day- sometimes that works better for some refluxers (and for some, it works better the other way round too, just to be confusing). Alternatively, it may be that the dose isn't quite high enough, as you suggested. Often very high doses of reflux medication need to be used, even in babies- often much higher than what adults take so that is another option. He may not feel comfortable increasing it though.

You are doing a really good job, so please continue to trust your instincts, and keep pursuing it with the doctors until you feel she is well controlled and more comfortable.

It sounds like you have made a lot of progress, so that's great. Good on you,

Glenda

[bossoflatch]

i am really confused at the moment - i don't know whether my problem is reflux related or simple breastfeeding issues - i have been on the aba site and nothing there is helping me ...

bubs has been on the losec fine (until now ) - but for the last week - has started getting fussy on the breast - will only stay on the breast until the first let down and then screams to swap sides - get that let down and then fussy .... about 3 times a day i have to give her the thickened formula - ...after a feed ..
i just don't know whether it is the breast feeding or is she upset with acid rise or what???

she has started gulping a lot lately too (she hadn't done that for about 2 weeks or so - and the hiccups have started again ??? and i thought she started smelling acidic again - hubby thinks i am being paranoid. there have been no chuckies as such - but her poos have gone really runny and explosive again ... - i just wonder if she is getting too much foremilk and not enough hind milk from not getting the latter milk and would this effect the acid??? i just don't know - being a long weekend and all - she is just getting worse!!!

at the same time she is a little off herself at the moment - wanting to sleep more and soo tired and grumpy, so maybe she is coming down with something and she knows the thickened milk is easier than the breast - doesn't want to be patient and the thickened milk in the bottle is easier for her???
leisa

[RISA]

Hi Leisa,
Sorry I wasn't able to get back to you any earlier.

That sounds like a difficult question to answer too. I can try to put you in touch with one of our mums who may be able to help with breastfeeding issues if you like? (not sure if she's away atm or not) If you would like to try doing that, can you email us your contact details to our email addy at info @ reflux.org.au (no spaces).

It sounds like it could have something to do with your let down and too much lactose, though of course the dreaded reflux could also be a contributing factor. ARe you still expressing some breastmilk off before you attach her? If not, perhaps that will give you some answers as to what is going on.

Some things I would think would be worth considering-
- whether cows milk is an issue for her- have you been having a lot of cows milk products lately (and perhaps chocolate over the Easter period)? chocolate can affect babies, but some can also be affected by cows milk on its own, so that might be something to consider as well.

- discussing her issues with a doctor. It can help to let them know what is going on, and they may be able to suggest something new. If you think you have smelled acid on her, chances are you have, whether you are paranoid or not. As a mum, you may be very finely tuned to any changes in her, so I would still consider that a factor- at least don't rule it out. I can remember disagreeing with my partner on things like that, and i was usually right, so please continue to trust your instincts. It may be that she is coming down with something, which can explain why things aren't so great again. It can help to have the dr check her out, just to make sure as well.

- how are you giving the losec? is it in a suspension, or are you using it from capsule form and trying to dissolve it as best you can? If it is in suspension, it may be worth asking what the suspending agent is, as that may also be a factor. Some pharmacies use bicarb, which can make babies a little windy (as can Losec sometimes, and cause constipation too), if they have added whey powder to prolong the shelf life, perhaps that is a factor if she is cows milk intolerant too. Also, one other thing- depending on the suspension they have used, it may have an extremely short shelf life (10 - 14 days), so it's also possible that is what is wrong. Did you have it prepared at a compounding pharmacy? It is really important that it is done at a compounding pharmacy as the Losec itself is really unstable and will become ineffective very easily if not compounded properly.

- one last thing- the thickened feeds, and perhaps losec, can cause constipation- the explosive poos may, (maybe not likely, but may) be a result of constipation too, so may be worth considering.

So, lots of different issues, and lots of things to make it even more confusing. What do your instincts tell you? I know it can be so difficult to work out, but it is so important you have to keep trusting those instincts of yours and keep pursuing it until you find some answers. Please keep in touch with your doctors too, so they can help you figure it all out. You are doing a really good job too, and if you would like even more support, you may like to consider joining RISA. Just thought a little extra support may be helpful too.

Glenda

[bossoflatch]

i'm baaaack!!!....

sorry ... couldn't resist that....:laughing:

just a few questions ...:confused:

the losec seemed to be doing the trick with bubs - she was sleeping thru having good feeds, even cut out the thickened comp feeds coz she was soo settled, but thursday night she - went down at 8pm as usual and then about 11pm she woke up gagging and then vomiting everywhere - she has never vomited as such .... has only ever been the pain reflux.... the gagging and vomited went right thru until about 5 am , and then she has been screaming right thru friday - so i took her to the doctors and he increased her losec dose to 1/2 tab three times a day - origanlly 1/2 tab twice a day - didn't kick in until sometime sunday - she started to settle and then monday she started really gulping and sometimes gagging again - she has been really unsettled and very fussy. she has been bringing up a little clear fluid - really acidic smelling probablytwice a day....

i gave her some thickened ar formula to see if this helped but it didn't so she has only been having breast milk.... ihave really restricted my diary consumption and i just wonder what foods you can and cant' have with regards to reflux... i think she has been reacting to cheese and possbily milk... does this mean i need to try soy.... i just don't know what my options are...

my other concerns are that i suffer from bowel ulcers and i have been known to get ulcers in the oesephegus (sp?) i am on meds for my heartburn.../ reflux... should i be worried that her meds don'tseem to settle her all the time with my history???

i have an appointment to see the dr on monday - but have just been concerned that maybe she has ulcers - is this even possible???

[RISA]

Hi again :)

I am so sorry to hear she is still having so much pain. Reflux can be such a difficult condition to control, and just when you think things are under control, something else changes!! It is so much harder than most people realise and it's just so unfair families aren't offered the support they need.

In answer to your questions, yes, babies can get ulcers from their reflux. The fact that you get ulcers in your gut may mean for her it is a genetic condition- not that that changes anything though. It's still a matter of trying to get things under control.

It still doesn't sound as though her medications are very strong- often babies seem to need very high dosages, much higher than what is normally used for adults (I think it is because they don't metabolise it as well as adults).

Because you suspect cows milk could be a problem, I would definitely pursue that. Soy may be okay to use as a substitute, but because the protein in soy is very similar to that in cows milk, there is a percentage of babies who are also sensitive to soy. The options there are to try it and see if it helps, or take both cows milk and soy out of your diet (and use either rice milk or some other milk substitute instead). If you do want to pursue this, it is really important that you discuss it with your doctor, and that you follow the guidance of a dietician as mistakes in your diet really matter, especially when breastfeeding.

Other foods to avoid (apart from cows milk and ?soy)- generally would be spicy foods; and fatty foods. Fatty foods can slow digestion, allow food to stay in the stomach longer, and therefore have more opportunity to reflux. Avoid acid type foods like tomato, pineapple, etc, and carbonated drinks. Avoid chocolate and caffeine. While you may likely be avoiding these, it's always worth mentioning- avoid alcohol and cigarette smoke as well. If there is any food you are sensitive to, then that's worth staying away from (if you do sneak bits)

I quickly read back on some of our messages, and you suspected she was bringing up acid- it looks like your instincts were spot on too. Hopefully that helps you to feel confident about your instincts, as you know you can trust them!

Are you still seeing the paediatrician? If not, perhaps you need to see them again, or even go to see a paediatric gastroenterologist if that's possible.

I'm wondering if she had an illness on top of her reflux that started last week. It seemed to come on very suddenly, out of the blue, so perhaps that is what has stirred things up so badly at the moment? Any illness can flare reflux, so if she has had some virus, it may have gone, but her reflux flare will perhaps continue for a little while. Do you think t hat's possible? esp as it came on so suddenly?

Are you able to use Mylanta now? or Infant Gaviscon?

As I always say, please trust your instincts, and please pursue this. You are obviously concerned that something is wrong, (and she sounds so uncomfortable) and while you feel like that, it is important to keep pushing for answers, and for ways of helping her

It sounds like you are doing a great job, and she's relying on you to continue looking for answers,

I hope that helps

Glenda

[bossoflatch]

back again..

you must get sick of seeing my post all the time..:yes:

i was just wondering - is it true that stress can make reflux worse??

we have been slowly getting some answers with bubs - can't remember what i wrote last time - but she has cows milk protein allergies and she is on the losec suspension and the new pepti junior foruma which has made a huge difference - she is sleeping during the day and laughing and smiling now - instead of screaming and crying ....:smiliedance:

so i really have two questions - what is the difference with pepti junior and the neocate ??? is one better than the other as the peadiatrician never even said anything about neocate??? having said that she is great on the pepti but everyone assumes she is on neacate:confused:

second question - the last week she has been getting bad again with the reflux - i only breast feed twice aday now as she was loosing weight and not feeding - so now between us we worked out she can handle 2 breast feeds a day and the rest is the pepti forumla... ( i really wanted to get some antibodies into her... ) but over the last week she has been getting bad with her reflux... but we did notice that she appears to be cutting two bottom teeth at the same time - you can see them under the gum, so i thought maybe that might cause the reflux to flare but hubby assumes it wouldn't - what do you think?? btw - i have cut out all dairy still so i can continue to bf her..

[RISA]

Hi,
(and no of course I'm not sick of hearing from you- it's actually lovely to hear that you have made so much progress, and I'm sure that anyone who has been following the thread will be pleased to know that things really can get better!!)

I'm glad that you have been able to figure out the cows milk sensitivity (and looking back on posts, I see we had discussed that several times, so yeay), and that between the new formula and the Losec, you have seen a big improvement. That's brilliant :smiliedance:

Pepti Jnr is what is called an extensively hydrolysed formula- the proteins have been broken down by enzymes so that they are more easily digested. This can work well for some bubs, as it is for yours, but for others, they may need a formula that is broken down even further. Neocate is in this class of formulas, which are known as amino acid based formulas. I don't know why Neocate is used as often as it is, as a first choice formula, but perhaps that is more marketing than anything. Not sure.

Regarding her getting bad again this last week, your instincts are working great, as usual. Teething can flare reflux in a lot of bubs- even if their reflux was well controlled before that!! There can be quite a few things, actually, that can flare it, and apart from teething, it can be things like immunisations, illness (even just a cold can be enough), being overtired, out of routine, a change in weather, or even crawling. (Basically, anything that stresses them out in any way, or with the crawling, that's simply because they spend more time horizontal). It's no wonder reflux is so confusing for people; it is so hard to make sense of, and there are so many different variables.

For some bubs, their reflux can flare so badly when they are teething that their medications may need to be increased for that period of time. If things get really bad, it may be worth talking to your doctor about that.

One other thing you may like to consider is the medication. How long has she been taking the Losec suspension? I ask that because it is really important to know what the shelf life is. This can be quite variable as it does depend on which suspending agent the compounding pharmacist has used. Sometimes it can be as little as 10 - 14 days, or up to 45 days with others, before it loses effectiveness.

Another thing to be aware of, is that some pharmacists add whey protein to the suspension to increase the shelf life, which would quite possibly be an issue for her because of her cows milk allergy. You may need to check with them to make sure they haven't added any.

Also, it is really important it is made up by a compounding pharmacist (who has the right equipment and training), and that the bottle is shaken well each time you use it too.

Those may not be factors, but I thought they were probably worth mentioning as well. You are doing a great job by getting her the help she needs, and your instincts are working just fine by the sounds of it :)
If you do have any concerns, please don't hesitate to talk to the doctors about them- at the very least you will get peace of mind.

HTH

Glenda

[bossoflatch]

hmm - i lot to think about - so very helpful.

the suspension has a shelf life of 3 months.... i thought that was long... and she has only been taking the suspension for a few days - before that she was on the losec tablet l- but the doctor thought she may not be getting enough to be effective once dissolved?? ( i just rang and now they tell me it is a two month shelf life ...:confused: )

the suspension doesn't have any milk or whey proteins in - (that was the one i did think to check)

but i will have to keep that all in mind - are their any medications for teething that would effect her losec??? or reflux??

[RISA]

Hi,
Interesting about the shelf life. hmmm. Would love to know what suspension agent was used to give it such a long shelf life. Did they tell you? (or are you able to check?)
Could you perhaps email me at info @ reflux.org.au (no spaces) to let me know what it was, and also which compounding pharmacist you used?? Will be very handy for our records, I'm sure, and I'd love to know for my own personal info!!!

Something else I just thought of- did they add any flavouring to the suspension? Because she has food sensitivities, there may be the possibility of her being sensitive to some flavourings as well. Might just be something to keep in mind. Has she been more uncomfortable since starting the suspension, or was it changed because she was getting worse? (or was it just coincidental?)

Every doctor seems to have a personal preference for which medication, and what dose, what form etc, but just remember the bottom line- find what works and stick with it :) If suspension ends up working best, go with it, but if you think the capsule worked better, it may be best to go back to it. It can be so hard to tell though, and maybe an increase in dose would be more effective as well!!

With whatever medications you choose to use for her teething, just check with the pharmacist to make sure it is okay for her to use. I think that comes down to personal preference really. If you use antacids, avoid giving other medications within an hour either side, but please check exact details with your pharmacist.

Maybe try putting some ice chips in a washer and let her suck on that- she might get some relief that way. If it's interfering with her feeding, it might be good to do that just before a feed as well. Might be worth a try anyway.

HTH
Glenda

[bossoflatch]

i will email you the info later today.. bubs been heaps more settled - not sure if it is to do with the increase of the losec or the fact that we have thickened all her feeds now - we have almost doubled the karicare thickener and now she is not screaming or in any pain as it appears from the acid rise... i don't know whether that is why she can't tolerate the breast feeds anymore as she i have been thickening all her formula feeds - today we are going to try the thickend ebm and see if she gets upset on that or not :fingerscrossed:

i certainly think she has the dairy issues as i have yoghurt and cheese and she gets really upset - but now i am off dairy and if i breast feed her she comes of really upset ..... so will be interesting to see if she reacts the same with the thickened ebm....

[RISA]

Hi,
That's great that something is working, and I hope you can figure out what it is so that you can keep on doing it. Just watch for constipation if you continue to thicken her feeds like that as apart from any issues the constipation can cause, it can also flare reflux. It can become quite a vicious cycle then.

Good luck figuring it out!! and good for you

Glenda

[bossoflatch]

hi again glenda !!
you would of had to realise i would be back ...:yes: :D

well - we have been going down hill and straight back up again ... last week we went back to the gp three times - as we couldnt get into see the pead so they chatted and decided that bubs wasn't that bad and i should go to the bubba hush day stay to make sure i didn't have problems with settling and feeding ( i do ..but only when she is in pain..ah duh!!!) and she reassured me that it wasn't colic and that something is wrong with bubs to be causing her that much pain... she did have problems settling her when she was upset too ... so i had to go back to the gp today as for the last three nights she has these bouts of really getting worked up to the stage that she is vomiting up - she has never been a vomiter .... she starts shoving her fists in her mouth and then she will start the gulps and then the gagging and then the screaming and now she starts vomiting either milk or the acidic clear fluid ??? ....... the gp and pead said she can't be in that much pain as she is on high losec and that it must be colic pain???? surely colic doesn't work like that ..and even the chn at the day stay said no! it is not colic - she should know....

anyhoo .... we got a referral to a pead gastro... the gp cant get me an earlier appt with the pead - so he went above him (if you call it that?? ) to get us an appt with a speacilist - what would we be looking at with the specialist ...ie what test ..what outcomes ..what would be going on to warrant a gastro dr ???

so confused - all i know is that i hate to see her in so much pain....
also - she is on the pepti junior and thickened with the karicare food thickener ... i know that has cows milk protien in the thickener - would that be enough to still upset her ??? the pead didn't think so ???? but something still upsets her ?? and i am still bf and off dairy completely - and try to bf her more now so she has less from the thickener ..but if she doesn' t have the thickener she vomits it all back up ...atleast with the thickener she doesn't...

the pead recommened weaning her early..(even the gp said this ) we tried a couple of times now and she just gags and gulps when we try - so we have given up ..should we keep trying or wait for later ???

sorry to ramble....

[RISA]

Hiya,
and yeay, I am so glad you have a referral to a paed gastro now!! and don't worry, it doesn't necessarily mean she has to have tests, just because you are seeing one, though it does depend on what they want to do, of course. They are basically paediatricians who specialise in the gut, so have loads of experience treating babies with reflux- and it sounds like that's what you need.

Hopefully you will feel more supported by getting another opinion and another perspective, especially one who is likely to have a lot more experience with what you are dealing with!! I know that it feels like you are the only one going through this, but there are a lot of families out there going through it too.

I am so glad too that you have some more validation from the nurses that something else is going on- I know as parents we start to doubt ourselves, especially if the doctors are telling us that there can't be anything else wrong (believe me, we all seem to play those mind games with ourselves!!!). I hope it helps to know that others have seen her when she is in so much pain, and that they agree with you (and also that they had problems trying to settle her then too).

RE weaning her early... do you mean weaning her off breastfeeding??? and if so, I'm not sure why they would want you to do that? Breastfeeding is still the recommended option for reflux babies, and babies tend to reflux less on breastmilk than they do on formula.

Given that you suspect the cows milk as a problem, then I imagine anything that even has traces of dairy in it, would be capable of causing problems. Pepti Jnr is more broken down than other formulas, but there are also other types that are broken down even further than that one, so perhaps the paed gastro would consider using one of them (Neocate or Elecare). While Pepti Jnr is suitable for a lot of bubs, it isn't the answer for all of them, and there seem to be a lot of bubs in our group who have to be on the others, as even pepti jnr isn't broken down enough.

Also, a lot of bubs with cows milk protein sensitivities also have problems with soy protein, so if you have substituted soy for cows milk, that may be why you are still having problems. Sorting out food sensitivities can be extremely difficult, and you may need the advice of a dietitian to help get anywhere.

As I said, I am really pleased you are seeing a paed gastro. You may be able to get the answers you need so that your gorgeous bub can feel much happier. Shoving fists in their mouths or down their throats is often a sign of pain as well, so I hope they can figure out how to help her.

Did you find out what was used in the Losec suspension? to give it such a long shelf life? Could you please message me or send an email through to our risa email addy to let me know who you use to compound the losec? IT would be great if we could get those details. Also, did you find out if they put any flavouring in the suspension as sometimes that can cause problems as well.

There are so many different things that could be causing problems, and it can be so hard working out all the answers. Having a doctor who is much more experienced in dealing with refluxers has to be a good thing- and just the fact that the gp and the paed aren't sure what else to do warrants referring her to a paed gastro.

IF he/she does decide to do some tests, then I'm sure we can help you through them. Have you thought of joining risa, so you can continue to get support from other parents? It can make a big difference to have that ongoing support, so it might be worth considering, if you haven't.

Anyway, I hope that helps once again, and I hope you can finally get some answers! and keep hanging in there, and trusting your instincts. You have done so well so far, to get the attention she needs- even if it meant hassling the doctors. well done!!

Glenda

[bossoflatch]

glenda ,

i don't know what to do ... should she be in so much pain .?? she can't sleep coz she is in pain .. and she is crying coz she can't sleep iykwim???

she goes to sleep and wakes up screaming .. and then stays awake screaming .... she has the gulps really bad - she starts off -bringing up something and then gulps it back down and then screams really bad as if in soo much pain - i am assuming acid burn ??? she refluxes whilst she is sitting up and really back archy all the time (well 90%) of the time ...) she is forever swollowing or gulping all the time ...

the gp has been chatting to the pead gastro dr at the rch - and advised us to go to the emergency dept if we couldn't settle her - we did on wednesday night and they said they couldn't help as we need to get exploratory tests done - and they can't do them after hours ... wait for a phone call to get an appt if we can anywhere from 2 weeks to 4 months...

i ring our PRIVATE pead and he can't see her - the gp has rang him too - but he too has given up ... and trying to get her in to the public system .. but for them to turn us away and to be told - they can't help because of the system - and now we are going into the long weekend and we can't help her with the pain ...

the drs at the ED were talking about changing her meds or the endoscope but that wouldn't be done until she saw the specialist .. (whenever that will be ) and they don't do those tests afterhours ...

private pead said not to give her the neurofen before 6 months and the hospital said - why not - she can't get anyworse (kinda that approach !!) panadol doesn't work - so not sure nuerofen would ??

also looked on the risa site - are there support groups or just assocaiton membership ???

[RISA]

Hiya hun,
I would have to say, no, it doesn't sound like she should be in that much pain. I wish there was something that would help you instantly, but at this stage, I would pursue it with the paed gastro.

Put a call into the hospital, if that is where you see him, and get them to page him. Do you have an after hours number for him, or is it then a matter of fronting up to the hospital? If you don't have an after hours number, then ring now so that you have a chance of contacting him, and at least finding out what you can do.

If that doesn't work, then continue fronting up to the hospital so that they at least admit her and see for themselves what is going on. I still wonder if it is due to a cows milk protein allergy/intolerance, and sometimes pepti jr / thickener just isn't enough. Sometimes neocate/elecare don't work brilliantly either, but they are the best available as far as i know as they are broken down more than pepti jr.

Re nurofen- please please please talk to your paed gastro before giving her any as it can be really rough on tummies- but at the same time, sometimes nurofen, or a combination of nurofen and panadol alternating seems to work really well. Talk to your doctor so he can help you figure out what is best for her, or whether it is important you avoid it until she is a bit older.

Re RISA- if you join the group, you will then get offered support through a variety of ways- we have telephone support, email support, online parent support groups, a membership pack, regular newsletters, coffee mornings, and informal get togethers. I still recommend that you consider joining, as it can make such a big difference, just in how we cope, to have the support and understanding of lots of other families. I can do what i can, but it just doesn't seem to be enough sometimes, and you never know when someone else will come up with a brilliant idea as well. Is that enough information, or do you want to email us to find out more?

All in all though, please try to contact your paed gastro so you can talk through your options over the weekend at least. Were they told that you headed up to the hospital the other night?

Glenda

[bossoflatch]

hi glenda - wondering if you can help me out or direct me to someone that can ...

we finally got bubs poo sample back yesterday .. it read

alpha 1- Antitrypsin (random faeces ) 15.0 mg/g dry weight apparently this is very high ???

they said she has protein losing enteropathy and also she has an obstruction in her bowel ???

they sent her for an xray and didn't think they would find anything but it came back with not enough gas in the belly or bowel???

they are sending her for a burium meal on the 2nd of july and then and endoscope during the week - waiting for a date ...

they said she has true cows milk allergy - and they SHE SHOULD NOT BE ON PEPTI - and that losec won't be any good for her anymore - but they said they won' t change her until after the tests as they want a true reading .... and then she will definately need noecate or similar ...

the gi said we shoud never of been put on pepti and didn't know why we would as obviously she is worse for it .. i have beentelling my pead this for over a month now and haven't been able to get into see him - too busy ????

do i still stay under her 'normal' peadiatrician or do i just need her pead gi now ?? or do i need both ?? i am due to see the normal pead in a month (earliest available appt they said and no cancellations) so is she really not that bad that he woulnd't want to see her - he doesn't have the latest test results ast the gp said the pead wont' be able to help her anymore and sent us to the hospital ... i have appt with the pead gi within a week or two ?? do i just keep the other normla pead and see what he says not sure what to do


what do you think??

[RISA]

Hi,
I am sooo glad you are finally getting answers!!(and doesn't it make you feel good that it was what we have been discussing all along??) I know it must be so frustrating for you to even think about how long it has taken, and how much you have had to push, but because you have been so proactive, you have finally gotten the answers she needs!!! Good on you!! :)

And it proves your instincts have been right all along!! Pepti Junior is better than the over the counter formulas (so at least was a better choice than them), but Neocate/Elecare are broken down even further, and hopefully one of those will help her feel much better.

I am so glad they are still looking into it too, and I hope the tests go well.

Re whether you continue to see the paed, I guess is up to you. Even if you stay with the paed while you see the paed gastro, you will find that the paed gastro will be in charge of any gut issues/treatments/investigations, as that is their specialty. The paed won't make any changes to her treatment in that regard, and will leave it all up to the gastro. If there are any other issues, they will get involved of course, but if you aren't sure, talk to the paed gastro about it.

IF it helps, with my children, we only saw a paed initially, but then when other issues arose, we changed and saw the gastro/resp dr as necessary, rather than the paed. Other families choose to see both, especially if their child has other issues.

I don't think that just because it will take another month to see you, that the paed thinks less of her issues; I'd say he is just really busy (or is even going on holidays in that time). I doubt it is a reflection on how he sees her case.

It is totally up to you, but there may not be a lot of point at the moment, to continue seeing the paed- you can always see them again at a later date if necessary. If you stop seeing him now, it doesn't mean you can't make another appointment later on.

Hope that helps

Glenda

[bossoflatch]

hi glenda - I AM BACK !! :laughing:

wow - we finally have been taken seriously .. with the stool samples coming back and me going to the drs all the time .. the gp basically said - he can't help us - he is not a gi and we need to see one pronto .. hmmm
so we wen to the royal emergency dept and saw drs there - who with her stool sample did a quick xraya - showed a blockage ??
so since then we have had the barium meal done - which clearly showed that she was still refluxing and some thickening ( i think that is how they said it ??) then we got slotted in for an endoscope we had it on friday ...
we started seeing a private gi - who thought more than likly it was food related ??

she is on 20mg losec and still refluxing with a fair bit of acid coming up .. poor bubba .. she has really good days .. ( she still has pain but she seems to be able to maintain it herself) and then she will have horrible days where she is screaming all day ..

my question is though - the endoscope showed that the stomach and the small bowel were good but that there was inflammation in the oesophagus ... would this be from the reflux ??? apparently they were still trying ot rule out a few other things as well though .. coz of her poo samples showing she is loosing plasma protien in high levels ...

so now we are waiting for the biopsies to come back and show us if there are any allegies and the inflammaiotn markers???

does reflux generally cause the inflammation in the oesophagus .. and when they scoped her they did her when she had 5 good days.. so she was quite confortable... but it still showed up - if you know what i mean ...?\

what do you think ???

[RISA]

Hi,
:smiliedance: They are finally sitting up and taking notice, AND finally getting some answers!! I am so proud of how much you have fought to get to that, though sorry it has taken so long. I know it hasn;t been easy, but hopefully your GP has learnt a HEAP from you, and the next poor mum with a bub with reflux/gut issues benefits from your perseverance!

and yes, unfortunately, reflux can cause inflammation in the oesophagus. It can cause ulceration and scarring too, and I still don't understand why reflux is not taken seriously within the community. I think most people just don't think past 'it's a bit of spit up, and every baby does that'. Technically though, drs would refer to it as Gastro-Oesophageal Reflux Disease (GORD), rather than reflux.

Inflammation can still be present (and can be quite normal in refluxers), even though she had a run of 5 good days- it can take a while to settle, and I imagine she was still refluxing quite a bit those days- perhaps just not quite as much? I do think the degree of inflammation can change, depending on whether they are going through a good period or not, though I'm not sure how much it would vary. Perhaps you could talk to your gastro about that?

It can be difficult to work out whether her food allergies/intolerances are causing all of her reflux, or whether it is just a major component of it - at least you are well on the way to getting answers, so that's great. I hope the biopsies make things clearer- sometimes allergy cells can be patchy and aren't always easy to pick up.

The poo samples showing that she is losing protein reflect may confirm her food sensitivities, though they would need to rule out other causes as well (such as Coeliac disease)- and it sounds like they are being thorough.

I'm just so pleased you are getting somewhere, and that your instincts have been validated!!! Well done, and I'm sure you are an inspiration to lots of other mums out there who don't feel their concerns are being listened to!! Just shows that continuing to listen to your instincts and pursuing your concerns, is essential!!

I hope she starts to feel much more comfortable now, though it can take a while to sort out everything, and work out what works best.... at least you are getting answers now! :smiliedance:
Thank you for letting me know. Have you thought about joining our group for further support?

Glenda

[bossoflatch]

Hi glenda..

have been chatting to wendy from risa (she has been a god send mwah :D )

they have somewhat diagnosed tayla has having FPIES (food protein induced enterocolitus sydrome)

problems is i cant find anyone to chat to about it .. the pead suggest that is what is wrong ? so casual and now i dont know what to do with her .. there is so much guess work, im just a mum not a medical person .. and now i feel so lost with it all .. i dont know exactly what i do with her .. or what i should be doing..

do you know anyone or any place i can go to for help with her ?

thanks heaps
leisa

[RISA]

Hi,

I'm so glad that you have been able to talk with Wendy (she's great, isnt she!!!), and that it has helped so much. I'm glad too that the paed has given you a name to put with her issues. Has she had any tests for him to confirm that, or is that a name he has given you??? (sorry, just trying to figure it out in my mind)

There are a lot of bubs/children in our group who have similar symptoms, though I'm not sure if any have been officially given that diagnosis. Often times they are given a diagnosis of multiple food intolerances, eosinophilic gastroenteritis and things like that. Often times there is no name to go with it.

There are lots of bubs who are on elemental formulas, and lots of bubs who suffer from reflux as well as bowel issues, so I am sure that you would find a lot of other families in a similar position to you if you wanted to join our organisation. (I even think Wendy's children have similar issues tbh)

Other than our group, I'm not sure.

I hope that helps
Glenda

[bossoflatch]

hi ..
apparently fpies is a clinical diagnoses there is no tests as such .. eliminatino ,diet and symtpoms ie .. when tayla started solids she got bad.. mucas in her stools and screams after food and then her bowels will go worse and then she wont settle and she gets bellyspasms too ..

i am joining the RISA group . keep forgetting to do the from that wendy sent me lol

thanks again ..

[bossoflatch]

Glenda -

i wanted to pop back in now i have the time to thank you for your support and believing in me when no -one else did..

Tayla has just recently been diagnosised with (systemic ?) mastocytosis..

Only apparently after her first histermine lesions appeared last month.. Since then we have seen her allergiest who said yes mastocytosis.. and we have started treatment after lots of bloods and tests..

We have her on lots of new meds and they are working wonderfully .. we have a new med from london that is on the way !:smiliedance: so now i can say i am not crazy .. to all the doctors .. i think it is a reminder to all of them - jsut coz you dont know ..doesnt mean that mum is crazy :ecomcity: I think i heard that several times..

but all thru this you gave me strength to keep going so i sincerely wanted to pop in to say thank you so much for guiding me thru the rough patches..

hugs a million :flowerz:

[RISA]

Hi Leisa,:wave:
Wow, my goodness, I am glad that you finally have some answers, though I have to admit I have never heard of that condition. At least now you can treat her so she can feel so much more comfortable. Does that mean she doesn't have reflux, or does it mean she has reflux because of this condition (or as well as?)

and wow, you are living proof that listening to your instincts is so important!!!! As the mum you KNEW there was something wrong, no matter how much nobody listened. I'm just glad I was able to help (and RISA too of course) you believe in yourself, and perhaps it would be good to make sure all those doctors who doubted you (and made you doubt yourself) know the outcome. Perhaps they'll also learn something in the process so that other mums don't have to go through the process you have had to!!!!

Well done and thanks so much for letting me know, what's going on with her,

:hugs::thumbsup:
Glenda

[bossoflatch]

yep she has reflux becuase of the condition from my understanding. the histamine reaction produce much more acid from the mast cell reaction . she is on zantac as it is a h2 blocker so we are starting to see effects she on much higher dosage and alson on a high dose of zyrtec and a new drug she is about to start is ketitofen ? its coming from london ..so hopefully she will be under control soon .enough!! thanks gain .. you have been wonderfull.. i seriously cant thank you enough :hugs:

[RISA]

Hi Leisa,
I am just happy I have been able to help. It's good therapy for me too, to be perfectly honest. We went through so much that it helps to know that it wasn't all for nothing, and I can use what I learnt to help someone else. It makes our experience not all negative, and gives it some purpose. It also helps me cope knowing that my kids didn't suffer for nothing, if you know what I mean.
So for giving me such great feedback and making me feel a million dollars, thank YOU!! :)

And don't forget you did all the hard work yourself. I was just able to help you believe in yourself, but the rest came from you!! I'm just glad you've got some answers now as a result of it all!! Well done!

Glenda
PS Would you be able to write something about trusting your instincts and pursuing it when you know something isn't right? to help other parents who might be doubting themselves? Could you email us at our RISA email addy so I can explain a bit more? thanks

[bossoflatch]

no probs glenda ..woudl love to .. :) will do it now !



ALL DONE :D