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.

Wow, your gp really is an idiot. My son has no rash either. There is a difference between an allergy ( where there is a rash) and an intolerance where there is not. As someone has said you can buy neutramigen if you want to try this but it is expensive. I think I have seen it for sale on the internet too. If you have a paediatric hospital near you I would take your dc there to the a& e too. If you are in Edin I can give you one of of our tins of neutramigen, and you should go to sick kids hospital.

Thank you all

Money is an issue but we'll find it to go privately. I've looked into it and the initial consultation is 250-way more than we can manage but we'll just have to take it easy the next few months.

Thank you all for the offers of formula but we're unfortunately pretty far away from you all. I'm going to call around some pharmacies today to see if I can track down a tin to try over the long weekend; if I can get him to take it and he brightens up then I have evidence to give to the GP on Tuesday.

Onwards!

I'm so so sorry about what you are going through. GPs fobbed me off too. My DD went through very similar and was diagnosed with CMPA when weaned. She didn't have a rash when BF but as soon as she herself had cows milk, she came up with a rash. So your GP, is talking bollocks.

Are you based in London? I have 7 cartons of unopened Aptamil Pepti which you are more than welcome to have. I could possibly even post you one tin or if you can arrange delivery, you could have all.

If really feel for you, poor ds and poor you just a though, if you feel the gps are fobbing you off is it worth your partner taking him to see them instead? Unfortunately they may listen to a "rational man" instead of a "hysterical" female?

You will be wasting your time in a+e. Sorry. You need a proper referral

Am really sorry to hear a and e were so unhelpful, sounds like its a really tough time for you. You are very sane considering everything you have been through.

Ime boots and lloyds pharmacy normally have nutramigin in stock. Aptimel pepti contains lactose, and a lot of babies with cmpi can also have a short term lactose intolerance from the damage to their tummy caused by the milk protein. Nutramigin is dairy and lactose free and may be a better choice. No experience of cow and gate pepti. Best of luck. If it is cmpi you should notice a difference in 2-3 days

Finally tracked down a pharmacy not too far from us (about an hour) that stocks nutramigen (sorry, not sure of spelling)

They've put two tins aside and I'll go and get them tomorrow morning.

Given that DS spent the last 45 minutes howling and looking genuinely petrified when the bottle came anywhere hear him, it can't come a moment too soon. It's absolutely heartbreaking to see him so hysterical about something that should come naturally.

I'm also going to see about going private on Monday. I'd honestly sell my soul to see him happy and content when feeding.

I think the damage has been done. He is now shaking every feed time as he clearly anticipates the impending shitfest.

As soon as we get a concrete diagnosis from the consultant, I am going to complain to everyone who will listen about the state of DS's GP "care". Am I right in thinking that I can complain to the practice but also the health board? Sorely tempted to write to my MP too.

Glad you managed to track some down, hope it brings some relief to your ds. Poor baby!
Is there a medical board you can make a formal complaint to? Sorry not in the uk so don't know the complaints system there.

Inapickle, I am really pleased to hear you have found some. Hopefully your son will take to it and like it. I would recommend you give it to him in a different bottle just so he knows its not the same as normal formula, so her might be more likely to take it.

Yes you can make complaint to the health board too, and you can leave comments online too about the experience at NHS Choices website. Go easy on yourself though, do it whenever you have time and feel up to it. It must be a tough time for you currently. All the best and keep us updated x

My tein DDs were exavtly the same. Our saving grace was Wysoy available in boots or tesco. Wouldnt do any harm to try it. You would see a difference within 48 hours if its working. Xx best of luck xx

My tein DDs were exavtly the same. Our saving grace was Wysoy available in boots or tesco. Wouldnt do any harm to try it. You would see a difference within 48 hours if its working. Xx best of luck xx

Hope things get better once you start the Nutramigen! Keep in mind that there are two types, Nutramigen Lipil does still contain milk protein but is hydrolysed, so if the symptoms do improve on this but don't go away completely you should push for a full amino acid type formula like Nutramigen AA or Neocate. It's very sad that you have had to source this milk yourself and you should definitely complain!

Glad you managed to track some down, hope it brings some relief to your ds. Poor baby!
Is there a medical board you can make a formal complaint to? Sorry not in the uk so don't know the complaints system there.

Wysoy contains soya protein, around 50% of babies with cmpi will also be allergic to soy. Ds showed a huge improvement on nutramigen, but it took neocate to fully resolve everything.

I know you have had other offers, but I would be more than happy to send or ship you some neocote formula. I have been where you are and it is truly awful. If you want to pm me your address or contact details I really don't mind.

I'm so sorry you're going through this. I've been there with a terrified baby due to reflux. One thing suggested to me when you try the new milk, change your bottles too. Try a different brand as far away from shape, colour etc from what you're using. It can help break the visual association. I changed to NUK bottles using latex teats which are yellow not clear. It definitely surprised him enough to try it. Good luck. We got taken seriously when we took our baby to a specialist children's hospital A&E, where we were admitted for a week after they saw my DS. Far cry from the GP who told me his reflux was normal that same morning. I don't know if that's an option for you?

Hi, so sorry to hear you are going through this. just wanted to add to the good advice above:

The anti allergy milk may not make a difference straight away - if he has got some damage to his throat from the reflux then you will need to allow time for that to heal before he stops being in pain. Do give it time though, assuming you can persuade him to drink it. Hope you can.

What a nightmare, I'm so sorry you've been through all of this.

I can kind of relate, as one of my twins was a bottle refuser (nothing worse than that, thankfully, he kept on growing and he would feed but quite unhappily and my gut instinct told me something was wrong). I met a sympathetic paediatrician and he got us to trial Neocate. It did eventually make a massive difference, but it wasn't instant - it took about 6 to 8 weeks before we saw an improvement, unfortunately.

Anyway, since then I have been managing it myself and paying for Neocate myself, which has been a nightmare, but we don't have any choice as we live in a country where no support is available for this condition.

I am using this research paper as my bible in trying to manage the condition myself - PLEASE read it as it will tell you everything you need to know (and there are some incorrect claims made on this thread, such as the difference between intolerances and allergies - you CAN have an allergy that has only delayed gastro effects and no rashes etc and it's called a non-IGE mediated allergy - anyway read the link for more info). Hopefully reading it will give you greater leverage over the doctors you have to deal with.

www.ctajournal.com/content/3/1/23

Good luck :)