Advice Needed - Losec, Domperidone don't seem to be working

[hmcgarry]

Hi,

I am really hoping for some advice.

My 11 week old daughter (7.5 weeks corrected) was diagnosed by a GP with reflux at 5 weeks of age.

At the time the symptoms were REALLY foul smelling gas (breastfed at the time), wheezy chest and some regurgitation (not a lot) and terrible gas pains. Sometimes we also felt like we could hear vomit getting stuck in her throat. Also she often had wet hiccups. At this stage she didn't seem to be in a lot of pain with it. The gas seemed to be more the problem and she would cry passing wind from her bum (she burps fine)

Regardless of the fact that the vomit didn't really seem to be bothering her all that much the doctor said to put her on 1ml of Zantac twice per day.

He also said he felt she may be lactose intolerant (that's the reason for the foul gas) and to put her on a Lactose Free formula (as I was weaning at that point)

We felt we had improvement with this combination of the Lactose Free Formula and the Zantac.

We had been on the Zantac for about 1 week when unbeknowns to us she got a terrible vomitting bug and then bronchilitis.

I mistook the virus as a flair up of the reflux as she was vomitting so much, screaming all day and hardly eating. So I took her to the hospital with a sample of the vomit - there was green phlegm in it and she had a slight temp they said it was a virus.

The hospital also called down the GI Doc and he said he felt she also had bad reflux with a virus and to go off the Zantac and try Losec and Domperidone.

In addition she also had a severe case of oral thrush which lasted 7 weeks and only cleared after 7 weeks after nylstat and daktarin gel didn't work they finally gave her diflucan which seems to have worked after a 14 day course.
I mention the thrush as the The GI doctor felt the thrush was from the reflux - apparently thrush breeds in highly acidic conditions.

So we are now off the diflucan and on Losec and Domperidone and no Zantac.

She has just had her dose increased to 2ml of losec twice per day the 20mg tablet. In addition she has the domperidone 1.25ml 3 times per day the 10mg tablet. She weighs 5kgs.

In addition the GI doc said he didn't feel she was lactose intolerant and to change forumla to a thickened formula (lactose based). He based this on the fact that my daughter was constipated and he said lactose intolerant kids don't get constipated?

My husband and I really don't feel there has been much difference on the new formula and the losec and domperidone. We give the losec via syringe 30mins prior to eating (same with the domperidone). We have her elevated at all times etc.

Since starting the losec and the domperidone and the thickened formula she seems to have more silent reflux i.e. less actual vomitting but we hear it going up and down and she gulps/swallows when we pick her up from her crying bouts. The silent reflux seems to bother her more then when she actually vomits. The gas pain is probably worse then before.

We get her wind up fine and think wow she has broken wind and burped so much that should be it and then 2 hrs after her feed when she is in her cot she screams and we go in and pick her up and she will break MASSIVE wind, do a wet burp and then try and go back to sleep.

I am wondering if the losec or the domperidone can be causing the wind (bum) pain the burps don't worry her?

Could the losec or domperidone be making her more of a silent refluxer and would it be better if she just got the vomit up?

In the last few days she has been vomitting after her feeds which she hadn't done since the virus cleared and she was put on losec and dom. Why is she suddently regurgitating again?

She seems to be in less pain when she actually vomits is this normal?

Her poo really stinks too could she be lactose intolerant and what tests should I ask for?

I guess I really just need help - should I keep her on the losec and domperidone?

Should I drop the losec and domperidone and just put her on the zantac?

I have hear Nexium can be the golden bullet - any info on that would be great as I really don't feel the losec is working. Half the time the granules get left behind in the syringe!

I have heard Zantac can make babies vomit is this true?

My son had reflux but not as bad as my daughter. The zantac worked for him. He was also on Elecare as he was lactose intolerant and after many 'food challenges' is only now at 2yrs drinking cows milk and eating cheese (he still can't handle yoghurt)

I am an Aussie living in Singapore and if I was in Aus I would just take my daughter to the same GI my son saw but unfortunately I can't.

I am really begging for some advice. Sorry for the long winded post. I just wanted to give as many facts as I can in order to get some advice.

THANKS FOR TAKING THE TIME TO READ!

[RISA]

Hi there,

Congratulations on your daughter, I’m sorry that she has had such a rough start to life. Sounds like you have been trying to source some information and there are different methods to help ease the pain / discomfort, but it’s all trial and error. What works for one child doesn’t always work for another.

Sometimes it can help to write down everything, and keep a running diary of what is happening, feeds, nappies, sleep, etc, this will give an outline of what is happening. Another idea is to write down anything which is in the family, as this can also help pin point what is happening.

It can take a while for some medications to take effect, as if there is any amount of damage in the oesophagus it needs to heal first and then you may notice a difference. But like everything Losec might not be effective for her as say Nexium or Zoton, as they all work in different ways. Alternatively, you may find it works better if you can get all the granules down; and sometimes the doses need to be increased too. Can you try and give the Losec on a spoon even young bubs can sometimes manage that, remember you must not crush the tablets, and they must be dissolved in water. You can ask at the chemist for a syringe with a larger hole, you will find that if you shake the mixture so that all the grainy bits are mixed then it is easier to administer, once they settle then its hard to get them out. If any of the granules get stuck you may need to try adding a bit more water to get them out. Another method is to get a medicine cup which is attached to teat and mix the Losec with a small amount of pear juice, this won’t affect the effectiveness of the mediation, you may have to make the hole bigger in the teat to let the granules go thru.

A lot of reflux children seem to have cows milk protein and soy milk protein allergies or intolerances, which can cause, vomiting, diarrhoea or constipation, abdominal cramps / pains and things like that. Maybe you can ask your doctors if you could try a formula like Elecare or Neocate, and maybe this might make a difference. As you have stated your son was on Elecare for lactose intolerance, maybe this is the same for your daughter. I’m wondering if perhaps your son had problems with the cows milk protein and soy proteins, rather than lactose intolerance since the drs used Elecare rather than a lactose free formula. That might encourage your dr to try a formula like those with your bub too. It might be worth talking to your doctor about trying it anyway, to see if it helps.

What thickener do you have her on? Are you using a formula that is already thickened, or are you adding a thickener and doing it yourself? Some children react to the formula thickeners, if you think her formula is a problem then please discuss this with your doctor. Also thickened formulas can contribute to constipation, which I will discuss more of later on. They can often help reduce the amount of vomiting, but may not reduce the amount of refluxing they do in their lower oesophagus, so that might be why she seems to be more uncomfortable now and is vomiting less. It is true to say that silent reflux can be worse than reflux which where they vomit, as it tends to sit in the oesophagus longer.

From what I understand (and I’m not a doctor), Zantac is a H2 Blocker, which decreases the amount of acid which is produced. There are side effects, as there is with many medications which are taken, and I believe that vomiting can sometimes occur with Zantac, but it can be really difficult to know what is going on if at any time you are not sure about and effects which your daughter is having please get them checked out with your doctor.

Domperidone (Motilium) is used to increase the movement thru the digestive system. It is also used to prevent nausea and vomiting, and it helps to move the food quicker thru the stomach which in turn gives less opportunity to reflux. Sometimes it can cause side effects too, and abdominal pain and wind may possibly be a result of that. As I said with the Zantac, please talk to your doctor if you are concerned about the medication.
It may also be worth talking to the pharmacist as I’m not sure that Losec and Domperidone should be given at the same time. As I said, I’m not sure, but it may be worth checking, just to be on the safe side. Perhaps the Losec isn’t quite as effective by giving it like that.
Please don’t make any changes with her medications without talking to your doctor and/or pharmacist first. It is really important to follow your instincts, and if you are concerned they are causing problems rather than helping, please seek medical advice on what you can do about it.

As for the stomach pains and the foul smelling breaking of wind, could she be constipated? Constipation is one of the main things which can cause reflux to flare. With some kids its hard to know if they are constipated, as they tend "to go" everyday, but you might find that its an overflow and the whole system is not actually clearing out correctly, and once you have this undercontrol then in turn the reflux will become undercontrol. Please discuss this with your doctor.

Living in a foreign country can be extremely daunting (Ive just returned from 2 years in Turkey), and I know from experience you will need to locate a good doctor and get an appointment with your GI Paed. The best thing I did when we were overseas was to get a good relationship with our doctors, otherwise it was alot of trips to London for treatment. Do you have the option of coming home for a appointment and then having a doctor in Singapore to do the follow up appointments, in liasions with Australia.


Reflux can flare for any reason, unwell, immunisations, teething, just having a bad day, constipation. Try to take one day at a time. Each and everyday can be different. If you want to see if she is lactose intolerant then they need to test her stools. There are unfortunately no tests for cows milk protein sensitivity, but it’s often ‘tested’ by taking it out of the diet and seeing it if makes any difference. As I mentioned earlier, it may be worth asking your doctor about trialing one of the elemental formulas.

The things which you can do for her now are:
. raise the head of the cot and change table
. keep her elevated after a feed for 20 / 30 minutes and never lay her flat, always keep her elevated as you are doing- well done for that
. you can try her in a baby pouch, (not a sling as they tend to squash the stomach causing pain / discomfort). She may be able to sleep in this upright position.
. warm baths at anytime of the day / night can help relax stomach muscles so may be worth trying.
. avoiding any tight nappies or elastic waistbands as that can put pressure on the tummy, causing more reflux
. perhaps try feeding her slightly smaller feeds slightly more often- with less feed in the tummy she may reflux less.
. join a support group who may be able to give you all the support and information you need (RISA has a couple of members overseas so it may be worth thinking about joining just for the support).

Good luck with everything. I hope you can source the information you need. Follow your instincts and remember you are doing a fantastic job, in a difficult situation.

Marie
RISA inc.

[hmcgarry]

Thanks so much Marie. We are still working thru things. My daughter was just put on Similac Alimentum Ready Made. I thought we may have found the answer but after one week we are back to where we started again.

Neocate has been tried and didn't work.

I have 4 boxes of Elecare which I bought from Aus to Singapore leftover from my son still in date. I am going to roll the dice and try this.

I plan to head back to Aus and see Rueben Jackson hopefully soon to get some help!

Thanks for your support - today has been a particularly trying day for us all!

[RISA]

Hi there

You are extremely welcome, I hope Dr Jackson can be of assistance to you when you come to australia. I do understand what you are undertaking being away from home, we too have just returned and are now just seeing the paeds etc to get a rountine of medical treatment for Olivia.

Anytime you need help then please dont be a stranger. I must admit that when I was in Australia the thing that go me through the toughest times with Olivia was RISA, I knew I would have someone anytime of the day to help and support me, and I wouldnt have survived without them.

I hope things settle down for you soon.

As for the formula which you have been using, Similac Alimentum Ready Made I dont know anything about it, but perservere. I hope that this new formula will help you.

I wish you all the luck in the world, have a fantastic easter.

Marie