Please help

[tiggy2]

Hi I have an almost seven month old daughter.
She got diagnosed with silent reflux at 5 months after doing the rounds of lactation consultants, dieticians etc and being told it was oversupply/undersupply, food intolerances etc.

She was on Zantac 1.9mls 3x day until recently, it seemed to each time work for a week or so when we increased the dose and then stop working. She has now been on Losec 2.5mg 2x day (liquid form) for almost 2 weeks and it doesn't seem to be doing much at all.

During the day she will pull off feeding and cry until she vomits, then she feels better. She will usually continue the feed 15mins later and do the same thing. The reflux doesn't seem to be silent anymore, she is throwing up heaps. After a solids meal she typically throws up 4-6 times in the following hour. At night she typically starts crying around 10pm and it takes 2-3 hours to settle her. She screams in pain, arching, trashing and sweating. After large doses of mylanta she eventually she gets tired enough to feed and then she settles for an hour or so, then starts again.

As you can imagine I'm getting very little sleep, but more than that it is absolutely heartbreaking having my gorgeous little girl screaming in pain for 6+ hours a night.

I don't feel like the paed understands how much pain she is in. She is hoarse from all the screaming and acid burn. The paed won't prescribe any of the other drugs available as he says they haven't been tested enough on infants.

Her bed is on bricks, I avoid foods known to aggravate reflux and I really don't know what else to try.

Any suggestions would be very much appreciated.

[RISA]

Hi Tiggy2,

Thanks for contacting RISA though I am sorry to hear how awful things are for you all. It certainly sounds like your daughter is quite distressed, and who can blame her!!!

There may be a few things you can do to help the paed understand how much pain she is in. Sometimes it helps if you keep a record of her days (and nights)- record all the times she feeds, sleeps, cries/screams, vomits, any signs of reflux, and any other issues or concerns you have. Keep that for at least a few days or longer if possible, as sometimes that can get their attention. I have done that myself, and found that it is a really good objective record of their life. For some reason, when it is written in black and white, it carries more weight and they seem more likely to believe you.

Another strategy is to videotape her and the things she does that concern you, so he can see exactly what she is doing. Sometimes seeing is believing! And the next one is to take someone along with you to the appointments, whether it is your partner, other family member or friend- just so long as it is someone who can back you up and agree with everything you say. Often that carries more weight as well, somehow like its not just the neurotic mother if someone else is saying it. Even perhaps videoing one of her feeds would be enough??

Hopefully these ideas will allow your paed to see the whole picture. Does he perhaps feel a bit at a loss about what to do? If so, would he be happy to refer you to see a paediatric gastroenterologist? They may have more of an idea where to go from here. I wonder if perhaps they would consider performing any tests at this point as well.

What medications did he say he wasn’t prepared to prescribe? Often bubs need to be put on really high doses of medications (for some reason), though I’m not sure why. Have you asked about increasing her Losec if he isn’t comfortable enough to prescribe something else? Some refluxers also seem to do well if they take both zantac and losec, though I’m not totally sure about the reason for that.

With the losec suspension, was it prepared for you at a compounding pharmacy? It’s really important it is prepared there because apparently losec itself is quite an unstable medication, and its tricky to work with. I am just wondering what other reasons may be that you haven’t noticed any difference just yet.
- dose, preparation, um, administration- how are you giving the losec? If its given with her feeds, it may be a little less effective than what it may be if given with water or something like apple or pear puree. Often parents unwittingly alter its effectiveness by giving it with the breastmilk or formula.

I’m just trying to think of possibilities for you to consider. At the moment, with the weather still hot and sticky, a lot of refluxers are doing poorly. This kind of weather seems to flare a lot of kids. Also, if she is crawling, or trying to crawl, that can also account for her worsening, as she is horizontal a lot of her day, as opposed to upright as much as you can!

How often are you feeding her? Sometimes smaller feeds slightly more often can work, so that might be worth a try. To make it difficult though, sometimes they prefer the opposite, so it may also be worth trying it the other way round. Does she feed better at night when there are less distractions, or is it still a problem? If it helps, it might help to keep every feed quiet and calm. Or does she appear to become more distressed and squirmy with her feeds?

- you said that you had investigated food intolerances, so does that mean you have trialled taking dairy out of her diet? (and since it sounds like you are breastfeeding, your diet?) Often that can have an enormous impact on how they feel too. Interestingly, there are quite a few children who are intolerant to dairy who are also intolerant to soy, so if you did try it and didn’t take soy out, there may be a reason it didn’t help. If you do consider this option, it may be best to discuss your choices with a dietician as it can take quite a few days to notice any improvements, and its also really important to get diet changes right!

Well, I hope that those few things give you some ideas to consider. Good on you for continuing to look for answers, even though it sounds like the paed is happy to leave things the way they are. Please keep listening to your instincts like you are, especially as it sounds like she needs you. I hope you find the answers she needs soon, both for her sake and yours.

Glenda

[tiggy2]

Hi Glenda Thanks for such a quick reply.
I've just come from settling her for her third wake up so far tonight and I was just thinking I should start a diary, so I'll get that going now.

It's not the paed doesn't seem to believe me but he doesn't seem to realise just how bad it is - we have friends with reflux babies who have seen our bub in action and all say she seems in a heap more pain than their bubs from it.

Video taping is a good idea and so is taking hubby to the next appointment, I'll try that.
A friend suggested a paediatric gastroenterologist today and gave me a name, I'll see if I can get a referral there but I can't get an appointment till April, which feels like a long way away!

The paed doesn't want to prescribe PPI medications, which have worked for others I know. I think the drug is called Zoton.
I will ask if we can up the Losec or combine it with Zantac, as it is definitely worse since we switched, not that the Zantac was doing much either.

The Losec we get from the Royal Children's so it should be done right I hope! It comes in a liquid form and I give it to her in a syringe just before bed at night and after breakfast in the morning.

Interesting about the crawling, she's just started doing that the last 2 weeks so that might be part of it.

How often for feeds, well most of the day and night! She has lots of small feeds interspersed with crying and vomiting. I've increased her solids this week but it doesn't seem to be helping.
Yes she feeds much better at night, at the moment she is feeding about 2 hourly at night.

I went on an elimination diet before the reflux got diagnosed, cut out dairy soy wheat etc and it helped a bit but not much, I am breastfeeding. I'm still off dairy and soy and she just has fruit, veg and rice cereal.

Thanks for your help, it is really nice to have the support. Hubby is working nights and I'm struggling to deal with it on my own.

[RISA]

Hi tiggy2
It sounds like you are doing a great job, though reflux in some children can be really tough to deal with. You’ve most definitely done your homework, so well done for that!! It sounds like you have some supportive friends too, which is great, especially as it is unusual for family or friends to understand.

It must be so tough to cope when hubby is working nights!! And I’m sure you are finding it hard to cope with. Ugh, even the thought of that is demoralizing!! If you are interested in checking out our group, perhaps that will help as it offers you that degree of support that even your friends may not be able to give (we have printed literature, online parent groups, coffee mornings and get togethers, depending on where you live, a library, regular newsletters and more)

I hope you find the videotaping and written diary help your paed to understand! You may be able to get in sooner with the paed gastro if you ring and ask to be put on the cancellation list. They may not do that, but it can’t hurt to ask, I’m sure. Just think, the wait is for the first appointment- any after that are generally not as long as you are an existing patient then.

I hope your paed will consider doing something to help with her pain, as it does sound pretty severe. Losec is also a PPI, but has been used in children for quite a long time now (my son was first prescribed it when he was a baby, and he is 10 ½ yrs old now). He may perhaps be happy to increase the dose as it does seem like it could be higher (though every doctor seems to have a different opinion on each specific dose).

Definitely interesting about the crawling, and if that is making an impact, you may also find the weather we are having is impacting as well- lots of refluxers seem to struggle in summer with the hot, sticky weather. Other things that could be impacting are teething, vaccinations, illnesses (even just a cold), change in routine or being overtired.

It’s also interesting about the feeds, and they may be a factor. If you are feeding frequently, especially if there are times that you are feeding hourly to 2 hrly, then it may be causing more reflux. Some refluxers like to comfort feed because they work out it is soothing while they are drinking, and demand their feeds more often. My son did that and it was exhausting. The stomach is most active about an hour after a feed, and so they generally reflux more around that time. To settle their discomfort, they demand a feed. What it does, is stir it up, so that in an hour or so, they reflux more again, and they demand another feed. It’s a very difficult cycle to break, and unless we know how that happens, it’s very easy to fall into. It can help if you can find some way of stretching the feeds, though sometimes the only way of doing that is to get their reflux under control. If you are able to break the cycle somehow, it may help get the reflux under better control as well.

Hope that helps once again
Glenda