Week 5 of bottle refusal-time for a&e?

[Inapickle123]

Hi

I've posted several times regarding DS's feeding meltdowns.

Basically, 5 weeks ago (he's now 18 weeks) he started going batshit crazy the second he took a few sucks of his bottle. He'd turn his head away, bat it away with his hands, scream...all the while whining and moaning because he was ravenous. The only way I could get him to feed was by making him so sleepy he could no longer fight it.

It's gradually got worse and worse, so much so that it's taking up to a full hour of tears before he will take 3-5oz.

Initially we thought it was teething as he was drooling all over the place and had his hands in his mouth pretty much constantly. However no remedy (and we tried them ALL) would encourage him to eat.

DS has always had severe reflux so we changed from ranitidine to losec as his vomiting seemed to increase at this time. He's been on it for 10 days now and, while the reflux has settled, feeding is still a nightmare.

I've basically lived at the GP and her solution is to wean. I'm happy to do this but he still needs to actually take milk, which he point blank refuses to during the day. Because I'm filling him up at night, he's not losing weight so the GP just doesn't care.

I've asked for a paediatric referral and I'm waiting for it to go through but the whole day and weekend is stretching ahead of me and I don't think I can manage more scream-a-thons.

Is it worthwhile setting up camp at a&e or will they just tell me to wait for the GP referral? I'm finding myself getting so frustrated at DS and was so close to shouting at him this morning. The poor soul is obviously miserable and I can't seem to find anyone who cares enough to help me fix it.

Poor you I personally would go to a&e - take a bottle and show them what he's doing.

Insist you want a peadiatric doctor to see him.

Let us know how you get on x

I agree a&e and ask to see a paed. You can't wait indefinitely for a referral to come through. It sounds like your ds is in pain.

I remember seeing your previous posts. I second advice to get into hospital, this isnt sustainable.
I would query a cows milk allergy and suspect the paed will investigate that. Sounds likely. Reflux a symptom, refusing feeds, and often cmpa babies hold their weight but are miserable.
Good news is you ccan quite easily switch to hydrolysed formula if necessary.
Dont let them brush you off. Happens far too much.
Good luck

My son had very similar problems and still does even though he is now 13 months. He was finally diagnosed with very large tonsils and adenoids. It hurt to swallow, he would choke, gasp for air cos he couldn't breathe at the same time. He has to have soft food etc. He also has sleep apnoea. Could be the same, some problem with swallowing and breathing. We are waiting to have them removed

It is neither a accident or an emergency.

Setting up in a and e in the Friday of a bank holiday weekend will not get you a paediatric consultant. If at all it will get you the on-call reg who frankly will be far too busy with seriously ill children to do much more than glance at your child.

A much better option would be to chase the lead referral. When was it sent, ring the sec, be polite, offer to take any cancellations going.

You are not an a and encase no matter how bad you feel right now.

Yes go to A&E, but be there for 7am in the morning, it's the quietest time. Hopefully they will give you an urgent referral to a pediatrician

Have you tried dairy free milk? Are you sure your LO isn't refusing the milk because he is allergic to it? Cows milk allergy. It may be worthwhile asking GP to prescribe you some

Actually chasing the referral is a better idea and hopefully they will feel sorry for you and give you a cancellation. If it doesn't work out, then a & e

As holiday says this is not an accident or an emergency. Please don't abuse the system because you are frustrated, understandably so.

My ds had very similar problems. We were sent to A & EAST twice by the gp. But as in your dc case, my ds weight was stable so he was only admitted over night.

Chase up the referral. I remember the stress but it does pass... my ds is strapping 9 yr old now.

Have you looked into cows milk protein allergy? My daughter was EXACTLY like this, she was treated for reflux, on maximum doses of meds, but these symptoms did not go away until we put her onto Neocate milk. I'd ask your GP for a trial of it until your referal comes through!

I just want to second that. Seriously look into cows milk protein allergy, get neocate off GP and give it a try.

I have aptamil pepti sitting her if you want to try and you are based in London. But getting neocate off GP or when you go to A&E is better.

Also there's no harm in giving neocate to your little one just to see if it helps. As it is, he is already on formula. If I were you I would give the GP a call now, or go to out of hours service, and insist you want neocate to try out, because you think your LO has CMPA. Something is obviously wrong if he is refusing milk, and you need to rule out CMPA first.

Sorry to be blunt but I think your gp is shit. It sounds like your dc may have cow milk protein allergy. My ds has it and he was just like yours. He developed a terror of feeding as it caused him pain. Tell your gp ( see a different gp if you need to) that you want a hypo allergic formula, we have neutramigen but as a previous poster said there is also one called neocate. They taste vile so you are likely to have to persevere with getting him to take it. We added ribena to ours, not ideal but better than him being fed by tubes at hospital. Go to a&e to get this if it will speed things up. Babies can end up being fed on tubes if they associate pain with feeding.

Agree with the above poster-your gp sounds rubbish. Her inaction has caused you and your ds weeks of misery and pain.

5 weeks of bottle refusal IMO does warrant immediate action, whether it is a trial of a hypoallergenic formula from your gp or a trip to a and e. You have been battling alone for a long time!

How long is it going to take for a paed appointment? Bottle refusal is so stressful-ds started it at 13 weeks and even though I had a paed appointment in a few days (referral already sent in for reflux) I found those few days very hard....I don't know how you have managed 5 weeks of it.

When all of this is over maybe make a formal complaint about your gp.

5 weeks of bottle refusal is an emergency! And yes, unfortunately many GPs don't have a clue about cows milk allergy

DD2 was very similar. We're lucky that we had an understanding GP & got a Paed referral at our 6 week check.
Just the sound of my bra clicking & getting into a feeding position would have her shaking in terror. We switched to bottles & it was still terrible. Feeds would take ages & shed just scream.
She also used to have seizures due to the pain.
We finally went on to Aptimal Pepti & Omeprazole & it made things so much better. She's 16 months now & she's outgrown the CMPA & is gradually being weaned off of her meds.
I'm in Central London & have loads of left over Pepti 1 formula you can have.
If you're very concerned about dehydration etc, ring up the out of hours & see what they recommend?

Thanks for the replies.

I've actually seen 3 GPs but as the first one was so dismissive of me, the others have followed suit as they've seem her notes. Long story short, I had severe PND so was under care of mental health team from very early on. As such, she already made up her mind that it was 'just colic' and that I was simply looking for there to be a problem before she had even seen me and DS. she even printed off the Wikipedia entry on colic for me to "read at home".

I begged her for a trial of the hypo formula and she staunchly refused. It couldn't be a milk allergy as DS had no rash (ignoring the bright red ring around his arse). Three visits and a new GP later, they conceded that it "might" be reflux and gave us meds.

I ended up going to a&e and wish I hadn 't. Once again, I was made to feel like a whiny and ott parent. Apparently as he's healthy and gaining wait, I just have to wait it out. I tried to explain that the ONLY reason DS is healthy is because I'm feeding throughout the night (less resistance) and on solids but it seems the only way someone will give a flying fuck is if I let him starve.

He had a meltdown in the waiting room and another before bed which lasted almost an hour. I genuinely don't know how much more I can take. I'm close to tears just thinking about it and dreading having to go through this shit even for just one more day.

I don't know what else to do. I've done everything right, gone through the correct channels, followed the protocol to the fucking letter and nobody gives a shit. I'm supposed to just accept that for the next 8 months ill deal with DS losing it at least 4 times a day?

I'm sorry but this just doesn't make sense to
Me. If it was me asking for pain relief or something to help me sleep, they would throw medication at me but present them with a child who literally won't eat during the day and its left to fester? Does he matter less? Why won't anybody help me? Am I asking too much?

I can't let him starve just to prove my point. I tried to chase up the referral but the GP wasn't in today and the holiday weekend means it'll be Tuesday before I can even speak to them to see what's happening. The receptionist said it wasn't on the system so no doubt fuck all has been done.

I don't know what else to do. This is beyond shit.

Weight not wait

Inapickle, I'm horrified but not surprised this is happening to you; my DS had less severe silent reflux and as long as he was gaining weight no one gave a flying fuck. Apparently it doesn't count if babies are in agony, as long as they're following their centile.

Almost every GP and HV I saw was horrible for this. No solutions, just 'he'll grow out of it and he's gaining fine'. I always wonder whether a combination of reflux and a horrible bout of croup when he was 10 months (refused all solids for a month and was incredibly wary or eating anything for months afterwards) contributed to him being an apathetic and wary about food now (he's 2).

On the bright side the reflux cleared up at 6 months and he's bloody obsessed with milk these days, so it does truly get better.

I have no useful advice except to keep fighting, and I wanted to post in solidarity.

I feel so sorry for you but have no experience of your little one's problems so have no advice to give. Please try and keep hanging in there, you are doing an awesome job in very difficult circumstances.

Inapickle, I am so so sorry to hear you are going through this, and that your tiny little man is suffering too.

I agree it does sound like cow's milk protein intolerance/allergy. Also agree most GPs are rubbish at dealing with reflux and mum intolerance/allergy (that's coming from a doctor, too (though I'm not a GP)). I have two reflux babies myself and was lucky to eventually find two female GPs who both had reflux babies themselves, so were more understanding (though not necessarily willing to do anything particularly proactive).

If you are in/near Birmingham, I have some Nutramigen (a "partially hydrolysed" hypoallergenic formula). Hypoallergenic formulas can also be bought over the counter, but they are expensive (think £12-14 for 400 g can), and not all pharmacies stock them. If you get in/call some pharmacies ASAP today, they may be able to order for you today and have it by this afternoon if they get weekend deliveries.

Is it financially viable for you to see a paediatrician privately? Some will see you without a GP referral, and you should be able to get an appointment relatively quickly. You will also then have the benefit of seeing someone who will be a little more objective, and not make diagnoses for your child based on what they know of your health.

With my son (my eldest), we waited about ten weeks for our paeds appointment. Ridiculous - he was borderline failure to thrive. We ended up taking him to see a paed privately before then, because things deteriorated so badly in the meantime. For my daughter (now 13 weeks old), we took her directly to a paediatrician, because I knew it would take forever otherwise. Thankfully we were able to afford it,

I really wish there was more I could do to help - please PM me if there is anything, or if you feel like a chat/some (sort of) real-life support.

GP

Milk intolerance, not mum intolerance! Haha!

I think they only develop mum intolerance in adolescence!

I used to bring my ds into the pediatric a&e at St. Mary's in London where all the staff from the receptionist to the pediatricians were expert at dealing with children. It was 40 min drive from our house, but worth it in the amount of time I saved from going to our local a&e where I once waited 4 hours for them to find a doctor who knew how to check a baby's ear for an ear infection (the cause of my ds' 105 fever). Ds was sick all the time, but wasn't diagnosed until he was 11 years old (he has mitochondrial disease). I completely empathize with your visits to gp's who think you are exaggerating symptoms and the constant self-questioning about whether to go to a&e or not. In the end, more than once, I delayed going to a&e because I didn't want to "abuse the system" and when I finally did end up going, I got told off for having waited too long.

My dd had hidden reflux and used to scream every time she was fed (not anywhere as bad your ds, though). She was finally prescribed a special staydown formula with rice starch (enfamil ar) by an american pediatrician and adding that to her otherwise exclusive breast milk diet was enormously helpful. She also got much better when we she started solids. We also put her to sleep on her belly and carried her around in "tiger" position (facing the floor held by a hand facing upwards around her belly and sprawling her body along the arm) a lot. I was at my wits end before she got better. I couldn't imagine having to deal with it with PND.
Best of luck with all of this...it will get better.

Is it an option to go private and see a gastro pead? They would see you quickly and get this sorted! My daughter spent 7 months like this because I was fobbed off so badly by our GPs. 'It's just reflux, she is on the maximum doses of meds, there is nothing more we can do'. My instincts told me it was the milk.. Sure enough after seeing the gastro privately, which cost £180 for 45 minute appointment. He was horrified at how we'd been turned away so many times. One week on neocate and we had a new baby. It was a miracle. I feel so sorry for you and your ds dealing with this, it is horrendous!