Really pee'd off and don't know what to do - small update

A had her review today at the hospital and they've flipping discharged her. The consultant was quite satisfied its a cmpi, told me to keep her on nutramigen, stop with the reflux meds and said I could have a referral to see a dietician to discuss weaning if I'd like. He brushed off the fact that she's started being sick again and said the 2\3 hours screaming we still get at night was just a touch of colic - wtf, she's 12 weeks old. And to top it off I asked for a repeat prescription for the milk and he gave me one flipping tub which means I've now got to go to my doctors this week and get more as that won't last her more than a few days. I can't believe that just when I felt we were starting to get somewhere we've gone full circle and are pretty much where we started. And I can't believe how flippant the consultant was - he didn't even examine her, a student doctor did. I just don't know what to do now because she's still not right. I feel like crying and just giving up but I know I can't as she needs me to fight for her. sorry for the moan - I know there are others with much bigger problems than this, I just needs to vent. 

UPDATE - been to see my gp this morning. She's a lovely young, quite young plus she has a 16 month old so I felt she was quite empathetic. She sathe they hadn't received the discharge letter yet but will get it faxed over and will reply explaining I still feel there are issues and requesting that A be dealt with by the GP now. She has given me enough nutramigen for another 10 days and has said that if she's still screaming in the evening then we can try the neocate. She also is going to request A be put back on the reflux Meds and they also be dealt with by the GP. I'm really grateful ans happy she didn't fob me off and is taking me seriously and is prepared to help. Hopefully, we may be getting somewhere again! 

Posts

  • I don't have any advice but didn't want to read and run. Big hugs, keep fighting her corner, you're doing a cracking job so far . Hope others will be along with advice shortly x

  • Thanks Mrs P, it was lovely of you to take the time to reply x

  • No problem, just hope someone drops by that can offer proper advice x

  • Oh MD, I'm so sorry you're having such a frustrating time. I don't really know anything about paed referrals and how they work as S is still just being seen by the gp. Is there any way to argue against her being discharged? Would she have to be under the paed to get the neocate if the nutrimigen didn't improve things?
  • Bloody hell what an idiot! Grab the dietician a appointment with both hands. Also try ringin his secretary and say you're not happy you need to discuss her again, you don't want discharging. How does he know its colic and not the cmp in nutramigen? Henry was in pain and still screamed on similar milk, good job he didn't tell me it was just colic... Did you say anything back to him or was you a bit bewildered? Make notes then he can't phase you with jargon and you can get to the point

  • Thanks all, I've been feeling quite emotional and a bit tearful about it today. I've stopped giving her the reflux medication which is what he told me to do as I feel I need to prove that she still needs them. I've got to go to the doctors tomorrow anyway to get some more nutramigen for her so I'm going to try and get in with one of the nice doctors and air my concerns. Ideally, if she's still not better in another week or so then I want to know they'll be prepared to prescribe her neocate to try. If not, then I'm going to phone the hospital and request another appointment. And so the battle continues......

  • Oh and to top it off, E has caught a bug and has been sick on me 3 times already tonight!

  • Is there an allergy team you could be referred to instead? N sees them and they've been great. They've dealt with his milk allergy and reflux. See the dietician too they'll help with weaning. We got a dairy free weaning plan from them.

    Can't believe they told you to stop the reflux meds? How unhelpful.

  • Thanks LLL, I hadn't even heard of an allergy team. I will mention it to the doctor this morning. I've been up most the night with poorly E so I'm tired and emotional so can't guarantee I won't cry when I get there!  

  • That's great! Stay with her it's hard to find a gp so helpful.

    If you end up on neocate and it does the trick, it may be worth stopping the meds anyway and seeing how she is. Henry's symptoms were a result of cmpa so when the paed told me to stop his meds I was scared but be was right as rain. The milk alone solved all his issues.

  • I'm glad your gp was so much more understanding, that's good news. Keep us posted with how you get on, hope she is ok xxx
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