I am so sorry that things are so tough right now, and my heart goes out to you. I hope I can help by sharing what I have learned, and the first thing I would say is to PLEASE do not think you are doing anything wrong. This is not your fault and you are definitely not doing anything wrong. Reflux can be such a difficult condition to cope with, and it can be made worse by the fact that people just don’t seem to understand that. As a result, they often don’t offer any support or understanding, and that only seems to make things worse. I can remember feeling like such a failure; I thought I was doing everything wrong; and also that other parents found parenthood a whole lot easier than I did. It made me wonder if I was meant to be a parent and the emotional rollercoaster ride you can go through is horrific. There is joy, feeling blessed, but at the same time there can be misery, anger, guilt, grief, sorrow, and more guilt for feeling the way you do. I learnt it is okay to have those feelings; that they are normal (and perhaps inevitable, especially without adequate support). I think most mothers of children with GORD go through that rollercoaster ride, whether they are able to admit to it or not.
Something else I learnt is that it is really important that you continue to trust your instincts. While you may be starting to doubt them and lose confidence in yourself, I think you will find that your instincts are spot on. You have made it this far, and I imagine that you have done that simply because of the fantastic job you are doing.
You may like to consider joining RISA, as not only can we offer you more support, it can be really helpful to talk to other reflux parents. It can help you feel normal, and its amazing how many tips and helpful hints you pick up on just by talking to other families. It can also help to know that other families feel the same way you do, and its nice to be able to offload about it all.
You don’t mention what formulas you have tried, but have the doctors considered trialling your bub on an elemental formula like Neocate or EleCare? Apparently approx. 40% of infants have cows milk protein allergy, and roughly half of them have problems with soy products as well. these formulas (which are on prescription) can make a big difference to some infants (though unfortunately not all).
Other suggestions- have you seen a paediatric gastroenterologist? Sometimes they have more experience dealing with reflux than even paediatricians, and it may be worth getting their opinion. Some infants need really high doses of medication, and they are also used to dealing with the higher doses.
I hope that you are getting support, so that you can take time out to look after yourself. That is really important; not only for yourself, but for bub too, so that you can continue looking after her. It is something you need to do, especially when things are so tough.
Other things that may help are:
- Keeping her upright for feeds and for half an hour after feeds
- Avoiding any pressure on her tummy, so try to avoid slumping, car seat positioning, and tight nappies and elastic waistbands.
- Consider using a dummy if she will take one
- If the doctor recommends it, offering an antacid when she goes to bed or when she wakes up distressed.
- Avoid exposure to tobacco smoke.
Did you know that things like teething, immunisations, illness, crawling, a change in routine, overtiredness and constipation can flare reflux? At 5 months, its possible some of those factors have influenced what is going on- and I always found it helped if I understood why things had worsened at a particular time. Reflux can be cyclic too, which can factor into it.
I wish there was something more I could do to help. I remember that time of my life, and it was overwhelming. Life does get better, but while you are living through it, it can be a nightmare. Please hang in there, and please keep in touch with your doctors so they can also help.
I hope that helps,