Hi Stargirl,
I?ve been lurking on Mumsnet since my daughter was born (she?s now 6 months!!) but finally decided to take the plunge and contribute, as your situation seems very similar to ours. Although now we are enjoying life out on the other side! Hopefully I can offer some suggestions. Sorry to have missed posting before your original Paeds Appt, but you?ve got follow-up soon so can revisit things there.
Anyway, my daughter had really bad (mostly silent) reflux from 2-4 months old, culiminating in 2 hospital admissions (over Christmas
) for feeding refusal. She was only screamy in relation to feeding and sleeping, which made things a little easier?but wouldn?t be put down on her back at all. She was in a sling pretty much constantly, which helped a lot, but meant there was no possibility of getting any rest too. For about a month she wouldn?t feed at all during the day (screamed at the mere sight of a boob or bottle) and woke every 45 minutes at night for a few sucks when still half asleep. And at that point I thought that was acceptable because at least she was feeding! (she was (is) exclusively breast fed but with attempted top-ups of expressed milk too).
We were eventually taken seriously because I had a tiny, skinny baby who clearly now wouldn?t feed day OR night (she?d done very well for the first 8 weeks), and a freezer full of breast milk she wouldn?t drink?and also because I am a hospital doctor so knew how to make the system work. Although at some points I was so broken I couldn?t really advocate for her at all.
On her second hospital admission (at this point I went in all guns blazing) she was put on high dose omeprazole (which stops acid production) and domperidone (which increases gastric emptying) and 48 hours later she was a different baby. Literally. She fed properly, was clearly more comfortable, happy and settled and slept better (this was relative as it was still pretty poor until recently, but could cope with that as everything else was so much better). Now, at 6 months, she is an utter delight!
So, I thought I should share some tips (all with hindsight!) that might help:
- Sleep in shifts: e.g. OH takes over 9-2, you do 2-7. Then you get at least some sleep every night. Unless you are getting decent naps during the day, you deserve as much sleep as your partner. Even if they are going out to work you are still working by caring for your baby.
- If she?s still in pain, she won?t sleep and she won?t stop crying. No matter how long you leave her. Make it about tackling her physical problems not her sleep. That is a battle you can win. You can?t sort her sleep out until her physical problems are sorted.
- Ask why they won?t try omeprazole and/or domperidone if reflux seems the likely culprit (ranitidine had a partial effect for us, but that soon wore off, which is very common) Omeprazole is much more effective. There isn?t that much evidence for drug treatment in reflux but you soon know whether it has an effect or not on an individual basis, so a trial period is definitely worthwhile. Make sure they give her a decent dose.
- Has cows milk protein allergy really been discounted? She sounds very allergic to me. There are some European Guidelines on CMPA here ? espghan.med.up.pt/position_papers/Diagnostic_Approach_and_Management_of_Cow_s_Milk.28.pdf - read them, highlight the bits that apply to you and bring them to your next appt. It sounds like you should at least try a hypo-allergenic formula.
- Make a diary of symptoms / problems and present it clearly e.g. she cried for an average of 7 hours per day over the last week. This was the most effective thing for us with relation to her feeding refusal. Sounds like you could do the same with hours of crying. At six months old my baby now hardly cries at all.
- Doctors generally AREN?T interested in sleep / routines / naps etc (harsh but true) ? they are interested in physical symptoms: she seems to be in pain (manifested as screaming), allergic type symptoms, the blue lips (this worried me ? what did they say about that?), whether there are any problems with her weight gain / development. Make videos of symptoms to show them. They also aren?t terribly interested in you and will use the, ?we?re getting no sleep? line to excuse fobbing you off as not coping / an over-anxious mum (Sorry - am being such a cynic!). Make it clear it is about HER, with the implications to you coming second (I am by no means discrediting how awful you must feel, this is just how to ?spin? it for maximum effectiveness).
- Make sure you are clear about what they are saying. You have been told to use CC ? so ?verify? with the doctor, ?Despite the fact my daughter appears to be in severe pain, and nothing has been done to change that, you suggest I just leave her to cry? Surely that won?t make any difference??? Make sure you pin them down on what they think is going on. TAKE NOTES in the consultation and ask them to send you a copy of the clinic letter that goes to your GP) so you have it all in writing. I don?t mean to sound terribly disrespectful to paediatricians and GPs (I am neither) but, in my experience, I think sometimes it is hard to be taken seriously as a first time mum. Had I had confidence that it wasn't something wrong with me / my inability to cope, I would have pushed much harder for earlier interventions.
It is REALLY hard ? the hardest thing I have ever had to cope with. And I had the advantage of medical knowledge and a best friend who was a paediatrician. But there are lots of ways to make them better (and, as a last resort, they do all grow out of reflux). One thing I have learned is that, as long as you are relatively well-informed / have realistic expectations, if something seems really wrong it probably is really wrong and needs something done about it.
But I cannot tell you how good life is now she is properly treated. A slight double-edged sword is that, like you, she won?t tolerate a spoon going anywhere near her and apparently has no interest in solids whatsoever? So, after moving heaven and earth to breastfeed her this long, she now won?t stop and it looks like we?ll be carrying on until she is 14. Oh well?
Best of luck x
(Goodness, have made up for not posting for so long with the length of this one. But hope it is helpful?!)