So worried, I just need a listening ear as i don't no where to turn with DD

[Cheekymonkeys2]

Hi
I will try and keep it brief but it has been a really tough time with my DD. She is 16 months old and amazing, she a very happy little girl but she has been seriously ill for the past 9 months. It all started with her having really bad nappies, 8-9 times a day sometimes which made her uncomfortable and unhappy, this lead to her loosing weight occasionally gaining but then rapidly loosing again. In November she was rushed in to hospital after I completely broke down, as so worried for them to discover she had pneumonia and a collapsed lung, she was in hospital for a week, which they then realised that she had an eating problem as well as weight lose. She was placed on neonate which she has taken to well, had allergy tests blood test and referred to Great Ormande Street which we see next week. In the mean time i have a 16 month old daughter, who is 20lbs and rapidly loosing weight, at night in constant pain, won't eat and to be honest seems to be starving her self, trouble sleeping, is constantly ill and has very loose stools, and yesterday she wouldn't drink. My GP won't help and says the hospital will deal with it, the consultants won't return my calls. And A & E says she has to completely stop drinking. (She has previously been tube fed to help but she has returned to not eating) I feel very alone worried sick and not sleeping for the fear that i will loose her. Please any advice could it be Silent reflux she has been tested for CF and chrones I?m so scared.

hi cheeky. is she drinking now? cos if not, back to a&e. they usually have a 3rd-visit-and-you-see-a senior-doctor rule

Hi only just drinking but it seems to bring on pain, she very tired the whole time and keeps falling over

ake her back to A&E, bugger the lot of them, you know better your her mum.

If for some reason you don't go to A&E tonight, I would take her back to the GP as the doors open tomorrow morning and insist on a referral to the emergency paediatric team locally. Yes, maybe they can't do much till you've seen the fancy specialists at GOSH. But just being checked over tomorrow by one of the paediatric team will give you a bit of peace over the weekend.

Though if it was me I'd be down in A&E now being stroppy and charming by turns Good luck

actually the more i look at it the more i'm with lisa123, just go now, tell them you know her and they don't

Probably too late, and I hope you're feeling more reassured now.

If she's falling over a lot, could you take her to A&E and say you think she might have bumped her head?

I really hope you get the answers and help you need

Hello Cheeky, how is it going?
A&E would have been my advice too. Failure to thrive should be a real red flag to the hospital. I think you are going to have to become a PITA mum to get the help that you need.
My GP has refused to get involved in the care of my DS, now that he is under the 'care' of a non contactable paediatrician. He too has eating/swallowing difficulties, but has only noticeably slowed in growth for the last year, but is still classed as thriving.. just.
Its only now that i'm realising i should have been far more a*y with everyone and things may have improved by now.

So sorry about what you have to go through.
It's so hard even if you get all the help in the world. The symptoms sure sound like CF.
Did you know that only 70% of CF cases can be diagnosed with a sweat test? My 16 month old is 3 pounds lighter than yours (which is why I am here... - failure to thrive, no other diganosis), but she is completely happy, normal stools, just not hungry... Sorry didn't mean to take over. Did they suggest genetic testing? You sure need help!

Hi everyone

Thank you for your comments, well we were in hospital on friday and i put my foot down, i had the most aregant doctor who tried to tell me that my daughter was normal, it was only when i told him that he had calclated all her weights wrong that he started to listen and the fact that i told him that i was dealing with a doctor that thought he new everything (i did get angry)

We were sent home with infant gaviscon and told to wait for the gosh appt in 2 weeks time, but so fair, the gaviscon has really helped, she has started to eat, sleep and poo normal, but as soon as we stop it shes back to the way she was before, its lovely to see her eat as we have never seen it happen before but we wait to see what the final tests say and what her levels of sodium choride are to determine the diagnosis x

Just seen this. SO sorry your wee one is so ill. Hopefully you will get some answers soon and if the gaviscon is helping then just keep going with it for now unrtil you get the results. xx