18/09/2013 at 11:39
I have just had another waste of time appointment with my GP and P cant see her consultant till October so i am putting her on new formula myself as i am sick of seeing her uncomfortable and getting nowhere.
Thinking Aptamil Pepti 1? I need something i can get without prescription.
Thank you x
18/09/2013 at 11:43
We just used cow and gate infasoy which we bought from Boots.
18/09/2013 at 11:57
Soy milk isn't recommended as they can still be allergic to the soya, same with goats milk which contains milk protein. That's what the dietician told us. You can get a hydrolysed formula where the milk protein is more broken down such as Aptamil Pepti or Nutramigen.
N is on Neocate as he didn't tolerate either of those which is an amino acid based milk. We get that on prescription. You can buy but it's £30 a tub.
18/09/2013 at 11:59
What about a private appt with a doctor/consultant? I ended up getting a private appointment re Jude's eczema when it was awful and the nhs was taking so long. It wasn't a cure all but did help and I felt listened to. Or see a different GP for referral? She needs a paed doctor by the sound of it.
18/09/2013 at 12:04
She has seen a peadiatrician but he cant fit us in again for 2 months and i am not prepared to wait that long. I have asked 5 GPs for a dairy free prescription to just try but they just shrug P's symptoms off. I am so sick of not being listened to no matter how much i explain her symptoms/cry at them. The only thing that got her referred to the paed was me scoring high on the PND scale.
18/09/2013 at 12:06
Oh MM that's rubbish, how about ringing the consultants secretary to ask for a script?
18/09/2013 at 12:17
I'd be tempted to test privately too. The formula is really expensive (I've seen a CMP free one in our pharmacy for about £25 for a small tin) so I am sure a private appointment would work out cheaper in the long run.
18/09/2013 at 12:53
F started on nutramigen 1 which worked at first but is now on nutramigen aa which is grand. I had loads of the first one left but gave it to a refuge otherwise I could have sent you some.
18/09/2013 at 13:10
We got neonate prescribed from a paediatrician in A&E. Our dr wouldn't until they got a letter from hospital saying he must have it. Tried pepti but didn't touch it
18/09/2013 at 13:13
Aw MM I am absolutely disgusted that you are being left like this. Have you spoken to a HV? I had to try a few but eventually found a specialist in food allergy and intolerance who gave the GP a good talking to and wrote to the doctor saying E is to be treated as lactose intolerant. (I know it's different to cows milk). Personally I would try the soya because you can buy it over the counter though it makes me furious that you should have to! E apparently is lactose intolerant rather than cows milk allergy but soya has mixes effects on her, but given its readily available and the same price as normal formula I would try. Keep a diary of symptoms as you change your milk and show improvement (I don't know what your symptoms are). For e it was us going from 5-10-20 poops a day to one! It was blindingly obvious.
18/09/2013 at 17:25
Were still battling wIth this too, were on nutramigen (mainly breastfed but needs top ups) but I'm not convinced it's suiting her that we'll. She has some good poos on it and is only going once a day now but most of them are still like water and she gets terrible wind and reflux symptoms with it. I asked a health visitor about me buying a completely milk/protein free milk but she said they dont recommend it as they add so much sugar to it, no-one else i know or even the gp had heard of this though!! I may ask my gp about neocate. It's terrible your still struggling to get a prescription, with L it took months of gp appointments, weighing and hospital visits to get nutramigen, it fixed her issues immediately. With P it only took a few weeks but she was loosing weight so I assume thats why. Hope you get somewhere soon, I know it's frustrating!
18/09/2013 at 17:46
The difference in GP attitudes is ridiculous although I did note that last time I went to the doctor F's note specifically stated that I requested Nutramigen as though I was some nut job!
18/09/2013 at 17:57
Well we have an update!! I was so cross after my GP appt that i called the paed and said if i couldnt get an appt within a week or so i would to go A&E next tine she had an episode to get to the bottom of this. I really let rip and then cried! But it did the trick as the paed called me himself and after a ling chat he prescribed Nutrimigen! HALLE-BLOODY-LUJAH!!! So the pharmacy has ordered it in and i get it tomorrow. Please God let it work!
I cant thank you all enough for your support. I am sorry i know i've been whingy, needy, pathetic and repetitive so thank you all for listening to me and telling me not to give in!! I am not a needy person at all normally but all this with the PND issues and losing mum has nearly tipped me over the edge so thank you all so much. I promise to not be as moany from now on!!
18/09/2013 at 18:08
I am so glad. Remember there's other options if it doesn't work, but it does for so many :)
18/09/2013 at 19:46
18/09/2013 at 21:29
Thank goodness they've finally listened to you. Be warned though, nutramigen is vile smelling and tasting so she may well refuse to drink it. I had to mix it with her previous formula to being with, gradually swapping a scoop for one for the other over a few days until she would drink it on its own. Remember that if you're still BF, you'll need to cut milk out of your diet too. I can't believe how long it's taken, I thought I had a battle to get S sorted. Take a look at the nutramigen facebook page for more advice and recipes etc.
18/09/2013 at 21:32
Glad you got somewhere. Hope it works! N wouldn't drink Nutramigen so we finally got Neocate. The dietician suggested putting a couple of drops of vanilla extract in the Nutramigen to make it taste better.
18/09/2013 at 22:11
Glad you got sorted. You should see a difference fairly quickly. Fingers crossed!
19/09/2013 at 12:31
Thanks everyone. Well she hates it lol! Will have to try and switch over one scoop at a time as half and half doesnt seem to do it....!
19/09/2013 at 12:37
Aw MM I'm so cross it came to you having to do that but glad you got it in the end. Fingers crossed she takes it soon. And please don't apologise for any whinging, gosh I have found it so difficult and frustrating that nothing o said was listened to and felt helpless for my E. You can always vent here x
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