?silent reflux and wind....at witts end

[rossmead]

Hi all,

I have recently been diagnosed with PND as have 14 wk old with sleep problems.

My little girl does not vomit but have to be constantly rocked to sleep only to awake crying as soon as put into cot and would have unexplained crying as if in pain. By chance a friend gave her Marina infant mixture and slept her semi upright....finally she slept!!

The GP agreed it was reflux and recomm we keep using Marina mixture. We are using at every feed but she still arches her back and is full of wind at both ends! I tried Gaviscon infant but the wind pains were even worse. So I think the prob is a combination of wind and reflux.

Am going back to GP this week. A friend said maybe Losec is the answer but that still does not answer the wind problem.

Any suggestions?????

Cheers,
Linda

[RISA]

Hi Linda,
Thanks for contacting our organisation. Congratulations on the birth of your beautiful little girl, though sorry that things are so tough- both with your PND and her reflux. If it helps any, mothers of bubs with reflux seem to be at a much higher risk of developing PND. I have no idea why it isn't more readily recognised, but the fact that it isn’t only seems to make it harder. I hope that you are able to get the help you need with that as well.

I think it's really important for you to know that you aren't doing anything wrong; all refluxers are different, and what works for one may not work for another- which means it is all trial and error, and it’s about listening to your instincts. There is no ‘one right answer’, and it can be very confusing as you try to figure out what works best for your own child.

It’s hard to know where the wind may fit in the picture, as there can be a lot of different reasons for it. Sometimes refluxers can be very windy because of food sensitivities, which are quite common (esp cows milk protein sensitivity); other times because of issues like constipation; or infection. Sometimes it may be because of all the crying they do, and the air they swallow as they gulp. I'm sure there are loads of other reasons for it as well, so as you can see, it can be very confusing.

Your doctor may consider using Losec as your friend suggested- it is used quite often on reflux bubs now, and can be really effective, as can other reflux medications (often it’s personal preference that decides if and what medication is chosen). It isn’t always easy to administer any medication to bubs, so if he does prescribe Losec, or any others, we may be able to offer some ideas if you need any- just let us know. It’s important to know if he prescribes Losec in capsule form, that the granules must not be crushed or they lose effectiveness. Most drs are really good at letting parents know that, but some aren’t so sure about it, so I just thought I’d quickly mention that. (Also that Losec can sometimes cause bubs to be windy, so just be aware of that if it is prescribed)

It’s great that your friend was able to discover the Marinas formula and sitting her upright really helped. Do you think the Marina infant mixture was helpful as well, or do you think it may have been more the fact that she was more upright that you saw a big difference? I have heard it being a great help for some bubs, but not for others. It can be hard to tell what worked sometimes, especially if you have made more than one change at a time!

There may be other things you can do at home that can help as well though you may already be doing a lot of these.
- keep her upright as much as possible throughout the day, but especially during a feed and for half an hour afterwards
- use a baby pouch or sling so you can carry her and keep her with you as much as possible
- use products to help keep her upright, such as baby swings, jolly jumpers as appropriate
- avoid tight nappies or tight elastic waistbands
- change her nappy before a feed rather than after
- offer smaller feeds slightly more often
- if breastfeeding, avoid caffeine, spicy foods, fatty foods, chocolate
- if you suspect food intolerances, then consider avoiding cows milk protein and soy initially- but discuss with your doctor before implementing. Medical supervision is essential
- avoid cigarette smoke

I’m not sure how much that helps, but I hope it does give you some ideas. I hope you both feel better soon,

Glenda

[rossmead]

Hi Glenda,

Thanks for your prompt reply and advice.

I am off to the GP tomorrow and will discuss possibility of Losec use or somthing else as I have a feeling that she has reflux oesophagitis.

In answer to your question about the Marina mixture....yes I think it helps a little but last night I slept her even more upright than usual and she went 7 & 6 hours between feeds which has not happened in months. So I really think that the upright position is more of a help. Have been trying to give her a formula feed (karicare) at night but abandoned due to the reflux...wanted to get that sorted first as I am not sure if that will make things worse or better.

I am not game enough to not use the Marina mix though as she has been much improved since starting.....
Will keep you informed of progress.

Cheers and thanks again,
Linda

[RISA]

Hi Linda,
I'm happy to help, and I wish you all the best at your doctor's appointment tomorrow. It sounds as though you are on the right track, especially as keeping her more upright helped dramatically again, and I hope you get something that helps her. In case it helps to know, even though it sounds like her reflux is causing a lot of discomfort, it doesn't necessarily mean she has any inflammation.
I'd love to know what your doctor recommends, if you get a chance (and don't mind). Thanks

Glenda

[rossmead]

Hi Glenda,

Well we started Losec...1/2 dissolved tab once a day on Wednesday. Have been giving just before or during the feed. The GP told me I could not give Marina mixture at the same feed as the Losec as it would affect absorption of the Losec??? Does this sound right?

I tried 3 days of dairy free diet for me....made me miserable and there was not change in Kiera....still really windy & arching in pain. Marina appeared to help but we have even had to resort to Panadol to get her to calm down

Started to give 1/2 Losec tab twice a day as GP said I could if I felt there was no improvement. Have decided to wean from the breast to try and eliminate my dietary issues from the equation. I have been gluten free and lactose free since pregnant. Have started Kiera on Karicare soy formula....

What else can I do. Have seen a comment about giving Losec half an hour before a feed....do you think that this will help??

I know it is mother's day but I feel like boycotting the whole thing.

Cheers,
Linda

[RISA]

Hi Linda,
I'm so sorry that your Mother's Day was so difficult! I know things are really hard right now, and it probably doesn't help much at the moment to know that things will get better, but they will. Just keep hanging in there, looking for answers, and i'm sure you will find them.

I'm sorry you feel the need to stop breastfeeding too- it may be worthwhile to maintain breastfeeding though, just in case you find it doesn't help- either by expressing or giving her one feed per day.

Hopefully the soy formula will work, but one of the things that concerns me is that if cows milk protein intolerance is an issue for her, soy protein intolerance may be also. Apparently the proteins are very similar, and there are a lot of kids who seem to be intolerant to both. If you don't notice any improvement, and still want to investigate that aspect, there are prescription formulas that may be more beneficial- they are really expensive without a prescription, but formulas such as Neocate or Elecare might be worth a try too.

It really does depend on whether food sensitivity is a problem or not, and unfortunately there is no way of knowing without trial and error.

With regards to the Losec, I'm sorry, but I don't know enough about the Marina's formula to know whether it is okay to give it at the same time. You could perhaps try asking your local pharmacist, or contacting a pharmacist at Medicines Line (on 1300 888 763 (9 am to 6 pm mon to fri) as they could probably give more information. It is probably safest not to give it at the same time, but I just don't know.

I do know that Losec should not be given with a feed- it needs to be given with either just water, or something like apple or pear puree. Milk feeds are not the right pH level and it won't be as effective if given near a feed. It's generally recommended to give it something like 1/2 hr before a feed if possible.

It may also take a bit of time, as Losec can take several weeks to get into their system enough to make a difference. I know it's hard until then, but it may also be a matter of providing pain relief until then (panadol etc, Mylanta, Infant Gaviscon). Are you making sure the granules aren't crushed at all? Are you dissolving it in a small amount of water?

Some bubs seem to need quite high doses of Losec as well, so if you don't notice any improvements, it may be necessary to increase the dose. I believe that children don't metabolise Losec as well as adults, so often they need doses much higher than what adults do.

There is so much trial and error involved, with makes dealing with reflux so much more difficult. It takes time, and nobody can really tell you what you should be doing. I hope you find something that helps really quickly, but if not, you may like to consider joining our group so that you get a lot more support along the way?

HTH

Glenda

[rossmead]

hi glenda,

kiera's feeds are all over the place so hard to do 1/2 hour before feed so i guess on a reasonably empty stomach would be ok?
linda

[RISA]

Hi Linda,
Yeah, it is really hard to do anything by the book when you have a reflux bub- you can only do your best!! and reasonably empty sounds just fine.

If you're unsure though, contact your local pharmacist.

HTH

Glenda

[rossmead]

Hi Glenda,

Just thought I'd fill you in on the latest.

Went to the paediatrition and told the whole story. He doesn't seem to think it is reflux so he has admitted her to hopsital for three days. I have been told to stop breast feeding and she is now exclusively on soy formula - this was done to give me some separation from her because of the PND. He has also stopped the losec and marina mixture.

I talked to the nurse that has looked after her for the morning....she seems to think that her arching ect is just a temper tantrum!!!!

will keep you posted.

Cheers & thanks
Linda

[RISA]

Hi Linda,

Wow, that's a turn around!! I'm sure you are so confused about everything. I hope they work out what is going on with her, and I hope that they can find the answers she needs to be more comfortable. I am confused though, how a child that young can be having temper tantrums, but I hope they can sort it all out for you,

Glenda