So frustrating!

[Woogy]

Hi,

I have a 4.5 month old daughter who was diagnosed with reflux at 10 weeks. She was continually unsettled, screaming/arching during feeding, vomiting etc.

She was prescribed Zoton which for the first 2 weeks was a saviour (she was happy and relaxed for the first time ever!). Then the Zoton ceased to work and she was prescribed both Zantac (0.5mls three time daily) and Losec (5mg daily) as her symptoms had worsened (so too had the projectile vomiting). She has been on Zantac and Losec (increased to 10mg daily) for a month now and I am not seeing significant improvement (unlike initially on the Zoton) and if anything she has probably worsened. She is still a projectile vomiter (even out her nose) and I have tried multiple formulas including Nan 1HA, S26 AR (suffered an allergic reaction), Soy, Goat, Karicare AR, thickening formulas with Karicare Thickener, Novolac AR and currently Novolac HA which I think is about as good as it's going to get. She has also been seeing a chiropractor for 2 months with little relief. I have also done the 'sleeping on an incline, the being upright after a feed, smaller feeds more often, burping often' etc etc to no avail.

I think if another doctor tells me 'she'll grow out of it, there's nothing we can do' (so far 2 GP's and a paediatrician) without even seriously investigating then I think I'm going to explode! They assume that because she's healthy in size (she now weighs 7.4kg though she is now only averaging 50-80g weight gain a week) that she can't be suffering too bad. The only reason I got her medication changed was because she had a screaming episode and threw up everywhere in the doctor's office .

I've even suggested the possibility of her having an allergy/intolerance which was 'shrugged off' so too a request for further investigation in case there had been more damage from the reflux than thought, or even potentially the thought that it may be something else entirely! I have a Biomedical Science degree and a Masters yet I have never been made to feel so stupid in all my life! My mum has had 5 children and with all her experience describes my daughter as a 'handful' and doesn't know how I cope. Lucky for my daughter, I'm extremely patient and it takes an awful lot to make me crack (though I think I'm getting closer to my threshold!!!). I've even tried taking my mum to see the doctors with me and she came out just as frustrated as I did!

Just recently I have had a couple of people mention that my daughter appears 'yellow' in skin tone (not the whites of her eyes, just her skin) which I too had noticed and I was wondering if this could potentially be from the medications? Her sleeping has become very average (she used to be a great sleeper but now averages 3 40 minute naps during the day and doesn't sleep through the 10-12 hours overnight anymore). I'm just dreading another trip back to the doctor.

Is there anything else you can suggest I do or consider that I haven't already done?

Many thanks in advance.

[RISA]

Hi,

Thank you for contacting our organisation, and congratulations on the birth of your daughter. It sounds like you are doing a fantastic job (even though it may not feel like it just yet). I am so sorry to hear how difficult you are finding it to get help, but am thankful at the same time that your mum sounds so supportive! Thank goodness for that, as it sounds like things are really tough for you all.

As you have already discovered, trying to find the answer to reflux can be really difficult, and it can take a lot of trial and error until you do find something that works. Have you let your doctor know that the medications aren’t working well? (it does sound like you have, or perhaps you aren’t game to talk to them about it either)
Interestingly, I just read a medical article that says that it is important not to give H2 blockers (e.g. zantac) and PPIs (e.g. Losec) together, as the PPI will not be effective. It may be worthwhile talking to your pharmacist, or calling the Medicines Line (on 1300 888 763) to confirm that, especially if you have been giving them both together. Perhaps that is contributing to some of the problem. You could perhaps ask about side effects of PPIs as well (more on that later)

You may already know, but the acid reducing/blocking medications that your daughter is on do not stop vomiting. The vomiting may still be a factor, but it is hopefully trying to stop it hurting or doing any ‘more’ damage, if there is any.

It is really interesting to me that you said that she suffered an allergic reaction to the S26AR and that she may be a bit better on the HA (and that you asked about the possibility of allergy/intolerance already!). Recently, research is showing that a large percentage of babies with reflux have cows milk protein allergy, and also soy; if you suspect that could be a problem (either allergy or intolerance), it may well be worth considering talking to your doctor about it again, only armed with some research. There are some formulas that you can get by prescription e.g. Neocate and EleCare that may be helpful. If allergies are a factor, the soy formula and goats milk formula would not be recommended (apparently the proteins are very similar). The HA formula has the proteins broken down a small amount, and the prescription formulas have the proteins broken down much further. While they don’t taste great, many babies are happy to drink them, especially if it doesn’t cause them discomfort like other formulas probably do. I can give you some websites if you want them, or you can perhaps do a search for cow’s milk protein allergy and gastroesophageal reflux in infants.

We have recently found out that most doctors no longer recommend elevating the head of the bed for babies with reflux. Medical studies are starting to show that it can in fact make their reflux worse, so it may be worth laying the bed back down flat (especially as you haven’t noticed any difference with it). You may also like to know that elevating the head of the bed is not recommended by SIDS and Kids.

I am so sorry that your doctors have been feeding you the ‘she’ll grow out of it’ line- I can imagine you are going to explode, and I don’t blame you. It really does not help you cope with the here and now by being told that, and honestly I think it just makes them feel better. In their defence, they generally only see them for a few minutes at a time, and mostly they behave like angels in those few minutes. It is very exciting to hear she gave them a very good display of what is going on, so thumbs up to your beautiful little girl for the screaming/vomiting display. Yeay!!

It is hard to cope with the fact that even doctors judge how bad a child’s reflux is on their weight, when in fact that is just one symptom of reflux- and the fact that she is such a good weight is probably due to your great parenting skills.

I am so sorry they have made you feel so stupid when it reality, it sounds like you are doing a great job (and you are quite obviously not stupid either!!). You are obviously doing a lot of research and doing the very best you can. It sounds too like you are doing a lot of the things I would suggest (like taking your mum in with you to the doctor’s appointment), so I guess my next recommendation would be to ask for a referral to a paediatric gastroenterologist, and maybe continue being assertive until you get one. From what you are saying, it sounds like your current doctors are not understanding the problem, and perhaps a paed gastro will be better able to.

It may also help if you kept a written record of what is going on with her- her feeds, sleeps, how long it has taken to settle, vomiting, screaming/crying and other reflux behaviours and anything else at all you can think of- even dirty nappies, activities. I don’t know why, but having it written down can have a lot more impact than what you are saying. Doctors will believe something that is written down over what you are saying, evne if it is exactly the same thing!!??? (In my experience anyway)

Her sleeping is quite normal for reflux babies unfortunately, and that can be a tough one, esp while her reflux is so out of control.

The ‘yellowing’ of her skin is interesting too- and I have heard of some babies who have had liver problems as a result of medications, and I believe that the drs tend to restrict the dosages in that age group. This is the only information I have on hand- it’s literature of ours that has been reviewed/approved by a paediatric pharmacist
“There is no study to date on the safety and effectiveness of PPIs in children. It is suspected that liver function may be affected in some infants under 6 months old.”

I gather you have already talked to your doctor about it, but maybe a blood test would help- either pinpoint if there is a problem or give you peace of mind if there isn’t. It may be a way of getting the drs to take more notice as well.

I can imagine you are dreading going back to the doctor, but maybe they will give you a referral because they are dreading a visit too? Who knows.

Other suggestions are
- Ensuring her nappies are not too tight, and she has no tight elastic waistbands
- When changing her nappy, try to mover her legs to the side rather than lifting them up
- Avoiding positioning her in the car seat at home, as that can put pressure on her tummy and cause reflux
- Try to avoid her slumping as that can also put pressure on her tummy
- Keep her upright during the feed and for 30 minutes after


That is all I can think of at the moment, apart from suggesting you think about joining RISA. While it sounds like your mother is really supportive, it may also help if you got some support from other reflux parents too. Just knowing you aren’t alone in dealing with this can make a big difference to how you cope, and I’m sure some of the others could give you some ideas as well. Unfortunately, stories like yours (the lack of support, is all too common, as people hear the word reflux and presume it’s a baby who spits up a bit! Reflux can be such a cruel disease. It continues to amaze me how little reflux is taken seriously.

Please continue to trust your instincts, and while you may dread going back to the doctors, please do what you feel is right too. You are doing a great job, and I hope you find the answers you need soon. I do personally think the allergies/intolerances angle may be the best option, but they are all so different and there are no promises either.

I'm sorry the answer is so long, but hopefully i've covered everything, and I hope it helps a bit

Glenda

[Woogy]

Hi Glenda,

Many thanks for your response, it was really encouraging. Sometimes you start to think that you are going insane or are over-reacting, and it's nice when people reassure you that it's not just you!

Just to answer a couple of your questions, yes I have advised that I didn't feel as though the medications were working to which the response I received went something along the lines of 'well there's nothing more we can really do'....almost made me cringe more than 'she'll grow out of it'! I was starting to think that I was expecting too much!!!

I was interested to read your comments regarding using H2 blockers and PPI's at the same time and I will certainly explore this further with our pharmacist. The informal 'research' I had done myself just indicated that they should not be given at the same time, they should be given at least 4 hours apart, and both half an hour before a feed. This makes routines interesting, given that one medication is 3 times a day, the other once a day but ensuring that they are spaced 4 hours apart from each other AND half an hour before a feed!!! I might pay a visit to the pharmacy tomorrow to see what they think.

I was aware that neither medications will reduce the vomiting, I have learnt to live with that (we have now graduated to using beach towels for 'spew rags' at times as cloth nappies don't really cut it anymore!). And I'm starting to learn to accept my new perfume, though my lounge suite has also copped it's fair share!.

In regards to the reaction to the S26AR formula, after only 2 bottles (3 hours apart) she had come up in red blotches all over her face which then spread to her body (they were hot to touch) and she slept for 7 hours straight in the middle of the day and was not interested in feeding, generally unwell etc. I spoke to the local CHN at our pharmacy who consulted with the pharmacist and it was agreed that this was a reaction to the formula and we were advised to cease using it. This was however, the only formula that gave this sort of a reaction. The others just gave her varying degrees of 'spilling', diarrhoea, constipation etc. When I questioned the GP about a potential allergy, the response I received went along the lines of 'I wouldn't think so'. Again, very helpful.

As for elevating the cot, we have not been doing this since she was 'evicted' from the cradle in our bedroom (at around 10 weeks), to her cot in her own room. It didn't appear to make any difference anyway however I was not aware that it was not recommended by SIDS and kids. Thank you for letting me know!

Your idea of keeping a record of everything is a fantastic idea and I will be sure to start doing that. It might even be beneficial for me to notice some patterns of behaviour etc myself.

Thank you again for your reply. I feel energised again to return to the GP, this time a little wiser, more assertive and armed with evidence! She is due for her 4 month injections (which they wouldn't give her on the date that she was due as she was on the tail end of a bout of gastro which followed a 3 week cold...poor little bugger just can't win). So I will hit them up again next week and seek another referral if they themselves aren't going to do anything about it. You are right, it is a shame that reflux isn't taken seriously at times or that the perception is that if they are gaining weight and sleeping through the night then they can't be that bad. Ignorance amazes me sometimes!

Many thanks again for all your advice, I greatly appreciate it.

[RISA]

Hi,
I am really glad I was able to help you, even if it was just mostly letting you know that you aren’t alone in all this, and that there are other families going through the mill like you are!

Sometimes it can help if you don’t expect perfection/miracle cure, but from everything you are saying, things are not under control- not anywhere near it. It can also help if you trust your instincts; and yours are obviously screaming at you that things aren’t right!! I’m a firm believer in trusting instincts, and have to say that any time I didn’t listen to them, and even more, allowed someone to talk me out of listening to them- I can now look back, with the benefit of hindsight, and shudder, because I was right all along!

I have to say there are some fabulous doctors out there who know a whole heap about GOR and GORD, so don’t lose faith. On the other hand, there are also lots of doctors out there who don’t seem to know much about reflux, and unfortunately, some even follow the outdated beliefs that reflux doesn’t exist in babies!! We had one mum last week get told by head paed that she needs to stop the reflux medications, because babies don’t produce acid and don’t feel pain!?

I hate too, when people downgrade the difficulty of living with a persistent vomiter- they will tell you it is just a laundry problem, but obviously have no idea the impact of that, and how difficult it really is! Or how expensive or exhausting it is either, sigh.

I think I have misled you with the zantac/Losec combination (and doh, I should have realised with your background that you would have figured that out anyway! Sorry). With ‘at the same time’ I did mean the doses within several hours of each other like you suggested, rather than being prescribed both. There are actually a number of reflux families in our group whose kids do take both, to good effect, but like anything, it often takes a lot of trial and error to work out the best medications, doses, combinations, everything.

With regard to the allergic reaction to the S26AR, perhaps it would help if you could get the CHN and pharmacist she consulted to put it in writing? That in their opinion etc, as this may carry a bit more weight with your doctor, than with you repeating what they said? (shouldn’t matter, but sometimes it does). I wonder what the thickener is that is used in that formula? some babies are allergic to other foods too or instead of, and it isn’t just a cows milk protein/soy protein allergy/intolerance, and things like wheat, eggs, corn etc are also quite common within our group.
Perhaps the S26 is made slightly different to the others too. Do you know if S26 is casein or whey based? And what about the others? Perhaps that would account for the different reaction? (just clutching at straws for you really, but thought it was worth mentioning)

Perhaps armed with more information about food sensitivities in babies and even how common it now is, and heading to your gp would help you get a referral to a paed gastro. I’ll keep my fingers crossed for you that the next appt goes well. Another alternative is to trial prescription formulas- either extensively hydrolysed formulas or amino acid (elemental) formulas.

There is a recent article written by Australian doctors about recommendations of formulas for infants with cow’s milk allergy and it lists recommendations, and some symptoms of various conditions. (it also includes the info that 40% of infants with GORD have CMA), so it may help too- it’s called “Guidelines for the use of infant formulas to treat cow’s milk protein allergy: an Australian consensus panel opinion” if you want to look it up.

I hope the immunisation goes well too. Just so that you know, anything that stresses them can cause a flare in reflux; and sometimes immunisations do (though every child is different and it isn’t always a problem). It can help to be aware of it, and so if it does happen, at least it will make sense, which I found helped a great deal. Same thing goes for teething, any illness, being overtired, being out of routine, even a change in weather, constipation and crawling. All those kinds of things can sometimes flare reflux (although I don’t think there are any scientific studies confirming that- its just a collection of what parents have noticed).

Also, with the cold lasting so long, it has me wondering. Sometimes reflux can present similar to a cold, with a runny/snotty nose, very congested etc, and colds can be mistaken for reflux.

Anyway, I will stop rambling now. Good luck at the doctors- it can be really hard to be assertive when you are so exhausted, (and often doubting yourself), but I can hear the energy in your post this time. Yeay!

Glenda