Can routine help reflux?

[Oli'sMum]

Hello There.

I have a beautiful 5 month old little boy who has been suffering the most severe pains since day one. He had all the classic symptoms: vomiting, little- no sleep at night, bucking off after 1-2 mouthfuls of breast milk, screaming all day long... yada yada.

I have finally been told he has reflux (after months of 'it is JUST colic') and to put him on infant Gaviscon... so I am trying this. My little guy screams in pain most of the day and I feel so incompetant in helping him to feel better.

Because he only sleeps for an hour at a time at night before waking screaming, I am in a constant state confusion, stressed and unable to cope emotionally with normal activities like keeping the house clean etc. I dread night fall as I know its another night without sleep... its been a solid 5 nights without 2 hours solid sleep. Even when I put him back to sleep, it takes ages for me to fall asleep.

I have been told that putting my 5 month old into a routine helps. I have tried to stick to an exact routine everyday, but it never happens. He doesnt sleep at night, so sleeps for random 15-20min catnaps, this throws all the other parts of the day out. Am I just going about this routine thing wrong? I have been trying to implement this routine for 4 days now. It seems that he cannot be forced into something when he is so out of sorts, my poor little guy!

Im really drowning and suffocating in this situation. My child nurse that I visit and my GP plays down what reflux is, as though it is such a common condition that its like having the snuffles. I feel like its just me that isnt coping with an 'easy' condition. :gloomy: I really feel frayed around the edges.

HELP?

[RISA]

Hi Oli’s Mum,
Oh gosh, my heart goes out to you, and there is so much I want to say !! It sounds like things are still so tough for you all. The first thing I feel compelled to say is that this is NOT YOUR FAULT, and you are doing NOTHING wrong!!!! Caring for a baby with reflux can be very stressful and overwhelming (as you have discovered), and most people just don’t seem to understand that!! (also as you have discovered). Lots of reflux mums have a similar experience, simply because most people think that reflux just means a baby who spits up occasionally. There are more serious degrees of reflux though, and for these bubs and their families, it can be devastating!

I’m sure you have been told to do or not to do an awful lot of things. From my own experience, a lot of people seem to think they know better, and mostly seem to presume we lack parenting skills. Why wouldn’t they, because we tend to wonder that ourselves!!! Hopefully it helps you feel better knowing that what you are going through and feeling is perfectly normal (and probably to be expected). I can remember bawling because I felt so inadequate and felt like everyone else could do this mothering thing a whole lot easier than me (and maybe I wasn’t meant to be a mum after all!!??).

Have you had a look at our website at all? That might have some information on it that helps too. Also, have you considered joining our group? It really sounds like you could do with some extra support through all this, and we can offer the support and understanding you could probably do with. Let me know if you want to know more about it, and it certainly isn’t obligatory to join, but I thought I would mention it, because everything sounds so hard for you at the moment.

Although it probably doesn’t feel like it, you have actually achieved a lot- just getting the diagnosis of reflux seems to have been so difficult, and you were doing the best you could to get the answers you needed. It breaks my heart that some people are still struggling so much :( and that you have been through so much! Anyone would be exhausted by now, and the fact that you are still fighting for your child speaks volumes, especially as you are probably desperate for sleep.

okay- how long has he been taking Infant Gaviscon, and have you noticed any difference yet? While it does help some babies, and it may be all they need, I wonder if he will need stronger reflux medication (particularly as he has been so distressed for so long). Medications like Losec or Zoton are commonly used on reflux babies these days, and often in quite high doses (though they do tend to be a little more conservative on babies under the age of 6 months). If you haven’t noticed any difference, or not much, then I would let the dr know that you are still having lots of problems, and perhaps talk to them about that option. Another option may be to ask for a referral to a paediatric gastroenterologist, who may be able to help figure out how to help more quickly.

It can be really tough to figure out what the best treatment is, because they are all different, and there is no one right answer, unfortunately. It is often trial and error, but at least now you are on the right track, which is a bonus.

If you feel like you simply cannot cope any longer, please talk to your doctor/nurse about it, or go to the emergency department of your local hospital. There are times that parents just cannot do it any longer, and the child may need to be admitted into hospital just to give them a break. it isn’t a sign of weakness, but simply a fact of life sometimes. I had to do that with my son- I just hit the wall and couldn’t do it any more, so we stayed in hospital for a few days until I could gather myself, and feel strong enough once again, to cope. Reflux can be a nasty condition, and it can impact the entire family in so many ways, and it makes no sense to me that it’s dismissed so easily!

Just like many families discover, until the reflux is under control, there may be nothing you can do that will help. It’s not because you’re incompetent, or doing anything wrong- it’s because your child is in pain. While putting him into a routine can help, if the reflux is causing so much discomfort, that really does need to be controlled before a routine can be established. Even then, a routine for a reflux baby can be tough to achieve!! Generally its people who don’t have children with severe reflux who can’t grasp that!

Apart from the reflux medications, have you ever wondered about food intolerances being a factor? If you are breastfeeding, it may be worth thinking about avoiding dairy products temporarily, just to see if that makes any difference. If you don’t feel up to it, then that’s okay. Any advice that anyone gives you, it is okay if you don’t feel comfortable with it, or if you don’t follow it. Only you really know what is right for your child, and it is really important that you continue to follow your instincts like you have been doing for so long.

I really hope that you are able to get support through all this- do you have family and friends who can help give you a break? It is really important that you look after yourself, especially as caring for a reflux child can be so consuming. As you say, you are exhausted, and you feel like you are drowning/suffocating with all this. Reflux is often NOT the easy condition people consider it to be, and many families feel overwhelmed with it (who wouldn't?). I can remember that feeling all too well myself!

Sorry this message got so long, but I really hope I have been able to help.

Glenda