Our Life: 2015

UPDATE

Confusion: so one of our learning points is that it is easy to get confused. Imagine, you’re child is being sick and losing weight. Then they give you Domperidone, Lactulose and Lameprozol. So you’re tired, stressed and your kid is still being ill; now you’ve got to figure out cause and effect but with the huge extra confusion of all these extra drugs which all have their impact on the internal system. It's not possible - you can only really understand these problems if you have one variable. i.e. one thing at a time.

INTRODUCTION

I thought I would write up our experience with our baby's 'serious case of Reflux' (GERD). Florence who is now 15 months old. She is very small but mentally and otherwise fairly normal. She is a bit behind with stuff like crawling but seems Ok. She is our 4th child- all otherwise healthy. A Fundoplication surgery has just been recommended- we are not going to do it.

Of course, I have no medical training; instead this is written to help others with Reflux infants when the medical types can;
1. Go blindly for drugs which don't work as the first step.
2. Recommend a very risky operation when the drugs don't work.
3. Not properly balance risk in contemplating surgery.

I don't want to sound anti-science or anti-doctors. But, I have read a lot of medical journals now from well respected sites on this subject and I believe that the drugs on offer are at best ineffective and we think actually counter productive.

In fact, none is suggesting otherwise- all the docs we worked with admitted that there was no solid evidence for any of these drugs. At worst case the PPI drugs are causing some of the symptoms of Reflux. I also believe a Fundoplication should be the absolute last resort unless there's a life threatening situation, given its high failure rates and high risks of new symptoms.

Here is our little story.

ROLLER COASTER

This is not going to be talking about the emotional journey, which is very up and down as with any other long term problem but inevitably, fairly boring and inconsequential. Instead I want to partake any useful insights which have been gained along the way which might be useful for other parents looking at the problem.

Reflux is a very discombobulating condition. And it wears you down.

On the one side you know you need to get MORE food in to make the baby grow.
BUT the more you put in, the more the child is sick.
SO, you try to find the optimal food input level.
BUT, you don't know because kids don't have a 'level marker'.
SO you guess. Then you get it wrong and they're sick or they lose weight.
THEN you get it right but after a little time it all changes again because they grow.

Severe Reflux can disappear for a week and then come back- FOR NO PERCEIVABLE REASON. It can drive you mad trying to figure it out...but enough about the fluff!

SYMPTOMS OF SEVERE REFLUX (GERD, GORD)

1. Being Sick most days.
2. All the little symptoms- unhappy, watery eyes some of the time.
3. Sick means it ALL comes out until retching last bit of stomach content.
4. Projectile sick- all of it.
5. Sick can be right after a meal, or hours later, or in the middle of the night (or right on the Dr Who Experience ticket desk!).
6. Sometimes multiple sicks per day.
7. Inability to get enough food into the baby.
8. Weight loss or very slow gain relative to peers.

To summarise about symptoms of Serious Reflux (GERD): its important to realise that most infants get reflux. Naturally, this is upsetting and inconvenient. However, unless your infant is losing weight or dropping down the percentiles, you've got nothing to worry about. 95% of kids grow out of Reflux in the 1st yr. And most reflux simply doesn't impact the child materially and the 'solutions' are worse than the problem. If you think your kid definitely has it AND its causing serious problems, then the Doctor (as in our case) will want to do the following tests.

TESTS and STEPS- roughly in order

1. Different milks: we tried a few different milks first in case she had an alergy or couldn't break down the more complex proteins. None of them made a difference and in fact we think made her worse as she drank less and was sick more. So we ended up on Hip Organic which we are still on. I guess this is simply an essential stage (trying the milks) you have to give a go.
2. Most doctors will try the drugs- Domperidone (improve muscle control around Stomach) and PPI drugs (Omeprazole, Lameprozole which reduce acidity) despite 2 specialist Consultants admitting to me that they have no evidence that they're effective. Mostly I think they're just hoping time diminishes the problem and parents are happy to be fobbed off with SOMETHING!
3. Barium Study to check nothing in the way- anatomy working normally inside. Swallowing and stomach emptying working OK.
4. Esophageal pH (acid) monitoring- this is a tube down the throat for a day to see how often the Reflux is happening- how far up, pressure, acidity. Ours was 20% of the time which they said was high.
5. Blood Tests- these show vitamin problems and also Celiac (not sure).
6. Endoscopy to have a look around with a camera to check the stomach and check the Oesphagus (is it burnt by acid for example). This study showed our babies LES muscle is very week or loose allowing food and acid back up the tubes. This study shows up celiac or other alergies.

All the tests are worth doing if infant has Severe Reflux, if only to put your mind at rest that there is nothing 'wrong' inside (like an obstruction or severe inflammation). In our case, it clearly identified the problem. A weak LES.

The Solution for a weak LES? Well, its either Drugs or a Fundoplication or simply just time (see below for more). Some people have a weak LES for their whole lives and live with the discomfort. For others, it is not bearable. As a parent, you have to make that call. Scary!! So what next....

MEDICAL SOLUTIONS

There are 4 possible avenues doctors will point you to where you have GERD in an infant:

1) Time- most grow out of it by age 1 (95% is a number I keep reading). 18 months and 2yrs are also referenced by some articles.

2) Domperidone.

3) PPIs (Proton Pump Inhibitors) such as Omeprazole and Lansoprazole.

4) Fundoplicationis- a few variations none of which are statistically different in outputs.

FOOD FOR THOUGHT! (I like the pun...sadly) ON THE 'SOLUTIONS'

1. Domperidone: our experience after about 5 months is that it is TOTALLY ineffective. Furthermore, on examination of research papers (link), there is zero evidence of Domperidone working for infants. Our consultants all admitted as much but they go ahead and prescribe anyway. We are now stopping taking it.

2. PPIs (Omeprazol) are one of the most heavily prescribed and over-the-counter drugs in the West and considered HIGHLY effective in the treatment of GERD in adults. It basically reduces acidity so calms the inflamed Esophogus.
BUT, there is ZERO medical evidence for PPI drugs being effective in treating infants with GERD (this link shows a proper blind study demonstrating zero impact on infants with GERD. This one also).

Worse than that, PPI drugs lower acidity in the stomach which has 2 effects. This;
a) Reduces the ability of the stomach to digest food because Acid is needed for that (that is what it's for!). Yikes. I think that Florence basically was made worse with this drug as often she was being sick 3-4 hours after drinking a bottle- but only on this drug.

Anyway, we're off this drug too now (14 days) and she is being less sick and her appetite has increased markedly which might make all the difference....could be a false dawn!!
b) Low acidity in the stomach disables the ability of the LES muscle to close (it closes when it senses acid). Evidence for this is pretty slight- I saw a video about it but can't locate it now.

This piece shows more support for being sceptical about PPI on infant GERD:

3. Don't get reflux confused with too much acidity. What you (or a baby) might feel with acid burn is stomach content coming up into the Esophagus which has no protection (unlike the stomach) from acid. Its about treating symptoms or causes. The CAUSE of reflux is often a weak LES (not high acid). The SYMPTOM is stomach acid on the esophagus which is delicate making individual get burning sensation. Anti-acid solves the SYMPTOM but not the cause.
WORSE: some professionals are of the opinion that many people (old people for example) do not have enough acid and yet they take Antacids which further lower the acidity further worsening the stomach's ability to digest and (some argue) for the LES to properly close.
Complex huh?
I don't how much of this to swallow (there I go again). However, this much I DO buy; acid is needed by the stomach. Reduce it and you reduce the stomach's ability to digest. That does not sound good to me. Our experience is that it worsened Florence's digestion. So logic and experience collide...convincing me.

4.Fundoplication is;
a) a BIG operation taking hours and requiring a lot of expertise and surgeon experience.
b) has very high failure rates requiring another operation.
c) causes new and lifelong symptoms in a high percentage of cases such as inability/difficulty to swallow, be sick or burp and causing retching. So you must be sure these risks are worthwhile. All in, I have concluded that my child would have to in a life threatening situation to make the risks worthwhile. As she is not, we've decided to not go ahead with the Doctor's recommendations. Many sources suggest a Fundoplication is not recommended except where GERD is causing serious side effects such as vomiting into the lungs causing pneumonia ('failure to thrive' is the phrase here..but who defines that exactly? I would suggest the parent must take that responsibility). Anyway, we think they're too ready with the knife. Not the first time and I don't blame them; it's in the training.

SEVERE REFLUX OVER TIME

Below you will see a chart which shows Florence's growth over 15 months. She started on the 25th percentile and she is currently about on the first percentile (1%) which means she is roughly the smallest out of an average bunch of 100 female 15 month olds. At her smallest (relatively), she was off the chart and probably closer to smallest out of 1000 females of her weight. Right now, she is creeping back to the 2nd percentile (we hope!!) and has had 3 days with only one sicking episode. And her appetite is better too.

This chart shows a child going from 25th percentile (25 out of 100 babies in weight) and then way below 0.4th percentile (below 4th in 1000 babies).

After the age of 12 months, Florence starts to creep back up the percentiles. It's even possible by age 2, she could be back onto the 9th percentile, following current trajectory;

NUTRICIAN and DIET

It is VERY difficult to get it right when your kid won't eat, when they're sick after or during every feed. We had some very useful advise from doctors along the way about food- even when the advise is brutal like 'you need to get another feed in'! It's hard to keep a track and be sure when you're also super tired. But one thing is sure, you need lots of tips from informed people and I would suggest the docs advise is good but a bit basic ('more milk', 'one more feed').

We now believe that we're on our own medically.

For the last month we have been taking baby nutrician advise (not many of these people around and none in the NHS). This is giving some useful tips on amounts and types of food and helpful support although no breakthrough. It's almost impossible with 4 kids to overhaul your whole system in one go so we take baby steps in trying different approaches.

Trying milk alternatives. Trying to limit wheat. More root vegies. All aimed at helping her gut.

Her digestion seems to have improved since we started using pro-biotics. She is more regular, even without lactulose.

Might make no difference...we shall see.

CONFUSION

Lactulose- so we have been told this sugary stuff does not react with the body in any way so you can give as much as you want (it sort of lines the insides and makes it all flow through faster). Anyway, constipation we understand is common with other digestion problems particularly in infants where immaturity of the inside bits is a factor. We think perhaps we didn’t give enough of this medicine- we are still giving it and have upped the amount to a point where she is being regular with the right consistency. Basically, it sounds obvious but if the baby’s isn’t pooping, she's going to struggle to digest- so…..keep it pooping!

We suspect that some of the other drugs may not have been helping with the constipation; although she is now off them all (except this) and still has constipation so maybe she's getting the wrong food, maybe she's not drinking enough. Either way, she's doing OK in this department with Lactulose.

OUTLOOK

Florence is still being sick almost daily. It's almost always at the end of the day. Why? The best we can come up with is that her whole system just gets tired out.

Whatever the reason, once a day is a whole lot better than 6-9 months ago when it could be several times and anytime in the day. And gaining weight slowly is much better than NOT!

Either way, we're not expecting the problem to go away suddenly. If she can continue growing that's as much as we hope for- likely going to continue being sick for sometime.

Maybe, when she is walking more on her own, she'll be sick less?
Maybe she'll steadily grow out of the problem.
Maybe as milk takes a smaller role in her intake, this will help.

We don't know but we're happy if she creeps up the percentiles and even if she stays on the current percentile.