what to do now...
After an agonising wait on the 10-week waiting list Rhys finally saw a paediatrician last Monday. I came away disappointed and fobbed off. I now feel guilty as people have told me I should have been more forceful but I did virtually beg for tests and was told they were unnecessary.
Rhys had not outwardly displayed pain or discomfort (arching back, screaming) for a good couple of months now (he is just 6 months old) but was still refusing food and milk. His weight was steady but he has just started losing. This was explained away by the fact that he has a cold. But this is exactly where we were a few months ago when he first got diagnosed (after a cold) and since then he has never fed properly. He is very often chesty or snotty anyway.
He examined Rhys in his mouth and on his belly and listened to his heart, that was the extent of the examination. He said he didn't think Rhys had any physical problems. I was told to completely stop his ranitidine and that he would arrange for a home visit from a dietician (who is actually just a specialised health visitor) to ensure we were getting enough calcium and vitamins into him. I've not heard anything about this yet. He said he would arrange for a follow-up appointment with himself in 6-8 weeks.
Well since then things have become so much worse. Yesterday for the first time in months Rhys had a back-arching episode. He has been having days of refusing all food/milk and only drinking what we can dream-feed him with in the night (about 12oz).
How do I get him seen again quickly? If I go to the GP will I get put on another 10 week waiting list? I can't believe it's like this for babies. I have no telephone number for anything other than the appointments dept at the hospital. They were very rude to me the last time I phoned (to find out when the appt would be). I do know the name of the paed. I don't even know what I am 'officially' supposed to do - presumably go back to the GP. I should have asked all this at the time. I feel awful.
Can anyone offer advice?
Rhys had not outwardly displayed pain or discomfort (arching back, screaming) for a good couple of months now (he is just 6 months old) but was still refusing food and milk. His weight was steady but he has just started losing. This was explained away by the fact that he has a cold. But this is exactly where we were a few months ago when he first got diagnosed (after a cold) and since then he has never fed properly. He is very often chesty or snotty anyway.
He examined Rhys in his mouth and on his belly and listened to his heart, that was the extent of the examination. He said he didn't think Rhys had any physical problems. I was told to completely stop his ranitidine and that he would arrange for a home visit from a dietician (who is actually just a specialised health visitor) to ensure we were getting enough calcium and vitamins into him. I've not heard anything about this yet. He said he would arrange for a follow-up appointment with himself in 6-8 weeks.
Well since then things have become so much worse. Yesterday for the first time in months Rhys had a back-arching episode. He has been having days of refusing all food/milk and only drinking what we can dream-feed him with in the night (about 12oz).
How do I get him seen again quickly? If I go to the GP will I get put on another 10 week waiting list? I can't believe it's like this for babies. I have no telephone number for anything other than the appointments dept at the hospital. They were very rude to me the last time I phoned (to find out when the appt would be). I do know the name of the paed. I don't even know what I am 'officially' supposed to do - presumably go back to the GP. I should have asked all this at the time. I feel awful.
Can anyone offer advice?
Replies to This Discussion
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Permalink Reply by Clare Good on -
I was in the same situation re. waiting list. Well mine was 9 weeks. I just kept pestering my GP, managed to find a health visitor who was on my side and who backed me all the way, and I actually finally took him to A&E because he had been so sick he was dehydrated. The A&E trip got me further up the list I think. Don't feel bad. It is such an information overload - it's so hard to remember all you have to say and ask. Have you got a health visitor you like and can talk to? I'd talk to them or go back to the GP. Keep pestering until you get the answers you want!!
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Permalink Reply by Sarah Moore on -
Kate I really feel for you. It is such a fustrating position to be in. I have a supportive HV nad the GP can fast track you to see a paed I think. Otherwise the only option is A and E. They just keep telling me that she isn't losing weight so not to worry too much. But in my mind, if she doesn't put on weight, eventually she will go off the scale. The worry for you must be if he gets dehydrated - especially in this weather. I have a paed's appt on Fri and I hope I am forceful enough. I am just as likely to walk out feeling frustated. I hope you get something sorted soon.
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Permalink Reply by Sim on -
i'd get back on phone to gp and ask for urgent appointment as you lo is in pain. if they cant help you at the gp ask for immediate referral to childrens hosp. the lack of food /fluids is a concern when it is so warm. does you lo have wet nappies??
i know it is tough buut you need to keep pestering. ask at the GP/paed for a trial on nutramigen to see what happens. it is a hypoallergenic milk and it helped my daughter after 1-2 days she stopped being sick and the pain stopped. she is milk intolerant. I was told several times by GPs and paeds that this was a load of rubbish but finally went private and got one single point of contact who knew all her history and the first thing he did was give us nutramigen.as it is worth trying!
good luck. call them now.x
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Permalink Reply by Kate on -
Thanks all. Have been getting run around all morning but am now awaiting a return call from my paed. Although not sure that the chances are good as I got given the no. of what was supposed to be my paed's receptionist but it turned out to be the receptionist of someone else and although she promised I would hear back, promises don't mean much anymore after the way we have been treated over the last few months. What a nightmare. If I don't hear by the end of today I guess I will have to ask for an emergency appointment at the doctor's in the morning. Keep your fingers crossed!
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Permalink Reply by Karen on
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Hi
Any recent referalls made, I have sat in front of the GP and requested a Rapid Referral to the Child Unit in one of our hospitals! They too have sat in front of me fobbing me off, but basically I become the biggest pain in the arse and insist that I cannot cope with the day to day effects of reflux, that waiting lists are of no use, or at least whilst I am waiting for a referral, to see a pead now. They usually then refer me the same day. I feel as if i have to be a pushy parent, but i thnk eventually they give in because they are sick of the sight of me and just want me out of their waiting room lol!!!
Your case sounds really urgent if he is not gaining weight and refusing to eat, thats appalling that they are fobbing you off.
The other is to go to A&E, where they HAVE to see you. Good luck, and don't be frightened of being pushy after all your little one is dependent on you speaking up for him as he can't talk yet., but don't give yourself a hard time about being fobbed off! lots of docs are crap!
Karen
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Permalink Reply by Victoria on
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I agree with this completely - I have been really lucky my GP was great and called the PAU and asked for me to be seen that day and I was and so far when I have called the hospital I have been given an appointment to see paed that day but I told them I would goto A&E and wait all day if necessary so they knew I was not going to go away - guess you just need to be persuasive and a pain in the bum to them??
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