Relux and prescription formula

[june05isttimer]

Hi there

Well we have been to see the Peadiatrician now with our 6week old bub and he has diagnosed a cows milk intolerance in the formula which is possibly causing secondary reflux.

We have been given a prescription formula to try being Pepti Junior and she is taking Losec twice a day.

She has been on this since Monday and so far I have seen very little change in her and she is still screaming pretty well all day.

I am finding now when she actually does drink she gets alot of regurgitation from the formula which seems to upset her even more.

When or will we see a change in her????
The Dr seems to think that we should be starting to turn a corner with her by Friday or Saturday????

What do you think and is it common to find that there is an upset in the pepti jun formula with regurgitatiion at all and what can we do about this??

I feel we are doing everything to assist with keeping her upright and elevating the cot etc etc..

The Pead suggested when she gets used to the formula and starts drinking more each feed (she is not drinking anywhere near what she should each day still) that we can look at thickening the formula with a karicare thickener or by putting an extra scoop of her formula in her bottle.....
What do you think...

Should I still be hanging in hoping for a change or is this how its always going to be???????????

I am not seeing an end in sight at the moment and our support base is very limited as we live far away from family..

help
Kylie

[RISA]

Hi Kylie,
Congratulations on the birth of your second beautiful little girl! Did Hannah have reflux, or show any signs of reflux? How is she doing now?

It sounds like you are doing a fantastic job with Jessica- and you have achieved a lot in only a very short period of time. It sounds too, like your paed is very much on the ball, which is also great. Cows milk protein intolerance/allergy is very common in reflux babies, so I’m glad that angle has been considered so soon. Sometimes Pepti Jnr works really well in the case of CMPI, but some bubs will need a formula where the proteins are even more broken down, and if you don’t see an improvement with her soon, it may be something the paed will consider. There are a couple of options- Elecare or Neocate, and they are also available on prescription.

Life will get better at some stage- though unfortunately nobody can guarantee when. You can expect things to improve- for some, if you find the treatment for them, it will be like you have found a magical ‘cure’, though for others the improvement isn’t quite so great. They are all so different. If you are getting concerned that you haven’t seen any improvement in her though, please get in touch with your paed. Do you have a second appt with him yet? No matter though, as you can always call to get his opinion.

Can I ask how you are giving the Losec? Is it in a suspension, or are you dissolving the capsule? This information we received from a pharmacist at a compounding pharmacy, but please check to make sure. If it is a suspension, make sure it is shaken really well each time. Also, do you know what they used as a suspension agent? Sometimes they add whey to it to extend the shelf life (as the suspensions often have a very short one); whey is a derivative of cows milk, which could be inadvertently adding to the problem. Bicarb, if that is used, can make them windy. If you don’t know what’s in it, then it might help to check. (oh, it is also very important it is made up by a compounding pharmacist- losec itself is quite unstable and it can be less effective if it isn’t).

If you are using the capsule, it is important not to crush the granules- no matter what age the baby. The granules are enteric coated and will lose effectiveness if crushed. I know that makes it more difficult, but that is the information we have from Astra Zeneca who manufacture Losec.

It is really tough to know when all this will improve. One of the most difficult things about reflux (there are many), is that there isn’t one right answer- no one treatment that will work for all refluxers, and it is often a matter of trial and error to find what works for your own refluxer. This is where listening to your instincts come in.

It can be difficult too because lots of people seem to think they know what’s best, and will often tell you what you should or shouldn’t be doing. This can be very demoralising for the mother especially- even though you have another child- which can make it even tougher to cope with. My philosophy has been to do what feel is right, and if someone suggests something you aren’t comfortable with, then it is fine to ignore it. Just because it worked for them (or whoever they knew with reflux), it doesn’t mean it is right or will be effective for you.

I really think its important to listen to our instincts- they are there for a reason, and they seem to serve us parents really well, and you obviously have great instincts. Please hang in there, and keep looking for the answers for your bub so she can feel more comfortable- and keep in contact with your drs so they know what is going on.

It's also important that you look after yourself as well. Are you getting support from your hubby? Are you getting a break so you can recharge your batteries? Is a mother's group an option for you? Sometimes they can be great, but sometimes they can make a reflux mum feel less confident and more inadequate- it just all depends.

Where abouts do you live, as we have some coffee mornings organised, or being organised, in Brisbane, Sydney, the Gold Coast and Townsville. If you don't live in those areas, then perhaps a chat with a reflux mum would be helpful? (Its great emailing, but even better to actually talk to someone who understands). If you'd like to do that, just send us an email to info @ reflux.org.au (no spaces) and we can try to organise that for you.

I hope that helps, and if there is anything else you’d like to know, please don’t hesitate to contact us,

Glenda

[june05isttimer]

Thankyou for your prompt reply re this situation.

We are currently dissolving the tablet as instructed in water and making sure she swallows the lot including the granules. So no problems there!

I am endevouring to contact the Peadiatrician on Monday or Tuesday re the Pepti Jun situation as he has given us some sample tins of it only to try.

This will have made it a week since she has been fully on the meds and the Pepti Jun.

So far she hasn't really increased the amount she is drinking (which her food intake is a major concern) and as I said previously the symptoms of the regurgitation seem to be more pronounced on this formula and she tends to get very upset and spewy in between feeds also.

I was told that if we go to neocate etc that these formulas are even thinner and we will still get these same regurgitation issues due to the thinness.

Is this so??

I feel this is causing her more discomfort than before although the bad wind problems have ceased.

My other daughter Hannah did not have this problem at all so this has really thrown me.

As for support.. no we don't really have family close by to rely on for breaks and to be honest my hubby is seeking some counselling for the anger and negative thoughts he has been having towards Jessie. He does not go near her at all now for fear that he may hurt her out of anger/frustration with her crying.
This obviously is putting extra pressure and strain on the home life as well as our relationship with each other and Hannah.
I am coping only just and spend some days in tears due to the crying Jessie does. I did go out today with both kiddies though and I do feel a bit better for it and thankfully now they are both resting in bed!

I have a lady coming to the house in a weeks time to help me with settling and feeding techniques so am hoping this will also assist us if she hasn't settled down by then.

Do you think it is worth talking to the dr about neocate on mon/tues before filling the pepti jun script or should we remain on pepti jun for another week and see what happens?????????

As for the morning tea that would be fantastic... I live in Arana Hills in Brisbane so if there is a morning tea going on I would love to have the details and attend.

Thanks again and look forward to your reply.

[RISA]

Hi Kylie,
oh hun, that sounds like you’re in an AWFUL situation!! I guess at least hubby understands how he is feeling and is staying away, though that would add a terrible burden to your already overburdened shoulders, I’m sure!! Is he okay with Hannah, so he can help you out with that at least? I’m not surprised you are spending days in tears!! Dealing with reflux can be really tough, but when you are doing it on your own, that makes it even harder!

With regards to her regurgitation, it really depends on what is causing it. If she is vomiting/regurgitating because of the food sensitivities, then putting her on Neocate or Elecare may just stop it. I have seen some bubs too who refuse to eat much on any formula, and get very distressed if they do drink it- start drinking large amounts with no trouble when on the amino acid formulas (even though they taste horrid). If she has reflux as well as a food sensitivity, then it’s possible the vomiting will continue. Impossible to know beforehand though.

Sometimes Losec, or any other medications, can take several weeks before they get into the system enough to make a difference, but given your situation, I think it would be helpful to talk to your paed and let him know that nothing has changed, and may in fact be worse. Is he aware of your family situation, with the lack of support and hubby not coping?? If not, then I think that would be an important point. In case things get on top of you, it is possible to be admitted to hospital with bub, so you can catch your breath. I did that when my son was a few months old- I just wasn’t coping and I was falling apart, so the paed gastro put us in hospital for a couple of days- and even though I still looked after my own bub, there were no older children, no meals to prepare, no housework, no nothing, so my stress levels dropped considerably. For us, he settled quite well, but even if that isn’t the case, they get to see things first hand just how difficult your bub is- seeing is believing and that can give them an extra push to find answers at times too.

Just remember it is an option, if you ever need it.

It’s great that she has less wind, but it must be so difficult when you think she is more distressed now than ever. I’m glad you are talking to your doctor about it, and I really think you should lay it all on the table, though that of course depends on you. Is that what you want to do?? Do you want to continue on this tack? There is the option of course of persevering, which doesn’t sound like a particularly good idea if she is more distressed; of changing the formula to Neocate or Elecare; increasing her medication; adding in another medication, or changing it altogether.

Has your paed perhaps suggested you could try using Infant Gaviscon? That works as a thickener as well and may help settled her tummy too. Or an antacid may help her feed, though by the sounds of it, the more she feeds, the more she vomits. You would need to talk to your doctor or pharmacist about those options though to make sure they are suitable for your bub.

Does your hubby understand that Jessie is in pain and that she isn’t being naughty? I am sure he feels helpless and frustrated, but if he isn’t quite sure what reflux is, or how it can be affecting Jessie, then we can provide some information (if that would help). Something else too, is that he is quite welcome to talk to one of our reflux parents- we can’t offer counselling of course, but as parents who have a good understanding of what you are going through, it may just help. Just email us with your contact details if you’d like us to organise that.

Have you rung the Ellen Barron Family Centre? Perhaps they will be able to offer some practical suggestions too, and an alternative idea is to just present to the hospital if you aren’t coping. It then gets it on paper, and you may be able to access some support via the social workers there. If they know the enormous amount of stress you are under, they may be able to organise a parent aide on a regular basis- for a while at least.

We actually have a coffee morning planned for Monday on the northside of Brisbane- but I just found out the mum who is hosting it is feeling unwell, so at this stage I’m not sure it is going ahead. Can you please contact me via email or via our website, and I can give you some further details at least- and we can let you know if it is or isn’t on?

You may also like to consider joining, as RISA can offer you support that can really help. I don’t know if you know much about our group, but we are an entirely voluntary group of reflux parents who provide support to other reflux families. Because we have lived through it, or are still living through it, we know how bad it can be, and how badly other families can need support.

We are based in Brisbane, and we have families in the local area who do occasionally get together on an informal basis too- that’s arranged between them either on our online parent group or through our newsletter. A lot of them are on Neocate as well since food sensitivities are so common). Hubby would be welcome to join in too, of course if you were to join. oh, and I nearly forgot, we are holding a Christmas party in a park in a few weeks time as well for risa members.

Let me know if there is anything at all we can do to help- even if it is just to talk,

Glenda