To be panicking re. call back to a&e?

[Finsmum86]

So took my 3 year old to a&e two nights ago as she managed to get hold of button batteries from a supposedly (!) secure location in our house and I couldn't be 100% sure she hadn't put one in her mouth and they can be very dangerous. I was almost certain she hadn't but better to be safe than sorry of course.

No battery showed up on the x ray so all fine.

Got a call this evening asking me to bring her back in to a&e tomorrow morning and I have spent the rest of tonight an anxious mess. The person on the phone couldn't offer any information about what it's regarding.

Anyone have any experiences of being called back to a&e after an x-ray? I'm assuming it's not battery related as I think they would have had us back in straight away and the doctor said when we were originally at the hospital that they are pretty easy to spot. But sounds like something semi urgent if they want her in at such short notice?

I don't think I will sleep tonight. No point to this post really and apologies for posting in AIBU but appreciate the traffic in case anyone has had a similar situation or knowledge.

Hi, thanks for thinking of us. The sweat test came back as normal so although I'm relieved about that, we are still in this limbo not knowing what is wrong with her and not knowing where the investigation is going next. We haven't had any sort of detailed information from HCP or any proper indication of where we go from here, just that we are to wait for a referral to a lung specialist at Alder Hey.

You may already be aware of this site op but just in case you aren't some of the info might help you to fight your corner on behalf of your DD particularly when they are trying to fob you off.

www.nice.org.uk/guidance

What gives you the impression that they are trying to "fob her off" rizlett? They recalled her dd remember?

Her GP has been "fobbing" her off for years.

By the way, I had similar "fobbing off" issues with my ds' GP's both in the UK and in the USA. He was sick all the time, vomiting constantly seemingly from car sickness and slept an inordinate amount of hours had eye muscle issues, lung infections, eye infections, ear infections, frequent 104/105 fevers, stomach aches, inflamed tendons etc. etc. As he grew older it turned into migraines and cyclical vomiting. He was finally diagnosed with mitochondrial disease at age 11.

Up until then, it was always my fault. Either I didn't take care of him well enough, or I coddled him too much or I was imagining his illnesses or worst of all were the implications of Munchausens By Proxy. He has been on a regime of supplements and medications since he was diagnosed and is a zillion times better. He still has other severe issues, but at least the medical ones are diagnosed and treated.

Any update OP? Hope things are ok.

I'm so sorry I have not updated, and I realise that although its the internet, people may be emotionally invested in my daughter's health worries for one reason or another - so I am genuinely sorry its taken me so long!

The initial sweat test for cystic fibrosis came back negative, but to confirm this, we are waiting for another test that checks elastase (?) in her stools, considering she has both lung and bowel issues We are at Alder Hey at the end of next month where I have been told she will most likely have a CT scans and a camera to investigate.

This consultant said he thinks it's likely to be a condition called bronchiolitis obliterans. I was initially relieved as the sweat test came back negative, but having read a little on bronchiolitis obliterans, I'm not sure this condition is much better.

We are still largely in the dark though so is frustrating not knowing what to do and feeling helpless. But on the positive side, she is well, and is her usual funny, caring and kind self ❤

Thanks for the update - sorry that you still have no answers

I remember this thread OP....thanks so much for updating. Great strides have been made in the treatment of bronchiolitis obliterans in recent years and certain drug combinations are seen to improve the condition.

It's likely that these strides will get even more advanced as your DD grows....and she will be fully supported by a multi disciplinary team who will ensure she's treated effectively.

Thanks for updating OP. I think of you and your DD sometimes. It must be very difficult not to have an answer still

Thanks for the uodate. This must all be very scary for you

Did they ever test for coeliac? I had bad chest infections before diagnosis.

Hi, I really hope you see this message. Did your child get diagnosed with OB in the end? If so, is it ok for me to message you discuss? My best friend’s child has just been diagnosed with it and I’m desperately trying to help her. Xx