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Allergies and intolerances

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Original poster

what would you do?

22 replies

addictediam · 29/02/2012 16:21

Dd1 has a cmp allergy, reactions include being sick, getting dehydrated, breathing problems, tummy pain and rashes. She is 16 months and on neocate milk.

So 3 weeks ago I gave birth to dd2. At 2 days old she started.throwing up alot after each feed and screaming much like dd1 did, so I tried her on dd1s milk and there was no sick and no screaming, she's been on it ever since.

Last week I took dd2 to the Dr to get her a prescription of her own, I was given 1 tin and told to put her back on cows milk formula for at least a week to get a stool sample and to see how severe her reaction is. I've been dragging my feet as I really don't want to put her through that, she's less than a month old!

I'm now being told if I don't they will stop authorizing so much milk for dd1 (dd2 is having her milk ATM so we are going through it much quicker)

So what would you do? I want to fight and insist both girls have a prescription until dd2 is say around 3-4 months when I'll challange her. Is this reasonable? She's just so little and I'm scared she'll react like her sister :(

OP posts:
CokeFan · 29/02/2012 17:08

You can buy neocate (expensive though).

Are you really going to want dd2 to be challenged at home by you at 3 months? I wouldn't. You could try asking the gp for a referral to a proper allergy clinic, given your history with dd1.

eragon · 29/02/2012 17:20

agree with cokefan.

Original poster
addictediam · 29/02/2012 17:29

They won't refer her until they've sent off the stool sample.

We can't really afford 315 a month for milk :(

I don't really want her challanged at home but thought this was a compromise. I've never had an allergy clinic referal for dd1 although she does now see a dietitian, but that's a whole other thread.

OP posts:
greenbananas · 29/02/2012 18:14

Could you see a different doctor?

freefrommum · 29/02/2012 18:29

Demand a referral, they have no right to refuse and I don't see what a stool sample is going to prove or disprove anyway. Don't take no for an answer, they are putting your child's health at risk.

Original poster
addictediam · 29/02/2012 18:59

Thanks, I just wanted confirmation I wasn't being completely. Unreasonable by making yet more demands.

I really don't know what the stool sample shows, we had to do itwith dd1 too, it was a pita and showed she had no allergy!? I told them where to stick it. I was really hoping I didn't have to go through all this again :(

Right back to the Dr we go. Both girls need allergy clinic referrals and I will not be putting dd2 on cows milk with out speaking to a specialist first.

OP posts:
Original poster
addictediam · 29/02/2012 19:01

(I was in the middle of demanding a clinic referral for dd1 but got ill and the pg got complicated and it was too much. So back to it we go!)

OP posts:
CokeFan · 29/02/2012 19:03

I'd suggest another doctor then. Where I am, they'd only suggest challenging at home if it was an intolerance (affects the gi tract, unpleasant but not dangerous) not if it's a true allergy.

mumat39 · 01/03/2012 00:47

I agree with freefrommum and cokefan. Definitely demand a referral for both your kids. Under NHS Choices, they have to do this if you ask. Ask to be referred to a peadiatric allergist. We were under our local hospital's dietician for the first 18 months after our DD was diagnosed with allergies and they were lovely but way out of their depth. I didn't realise that I would have to ask to be referred or that there were specialist allergists so it's really important that you ask to be referred and that you see someone who can do some simple tests as soon as possible.

How did your DD2 do before you moved onto Neocate? Was she thriving? I honestly think your GP is being really unhelpful. Based on your DD1's history, he/she should at least consider that it is possible that your DD2 could have the same issue with CMP. If she is definitely much better on Neocate, then that says something and the GP shouldn't be so quick to discount this.

My DS who is 25 months younger than DD, didn't thrive when I breastfed him and he was clearly not tolerating anything I ate. My GP and health visitors all felt he should be put onto Nutramigen at 3 months and he has been on it for the last 2 years, so GP's can do this is they feel it's necessary. DS was also referred to an allergist and was tested for allergies with skin prick tests and blood tests. DD has a long list of food allergies so this was one of the reasons the professionals thought it was good to get DS tested.

If it comes to it, tell the GP that you are not prepared to give your DD2 milk and see what happens. The GP has to refer you so could you pay for the milk until you can see someone?

Also seeing another GP might also be a good idea, although, you might encounter the same 'attitude' if it's in the same practice. I'm not sure how easy it would be to change practice but is that another option.

Sorry for my long reply. I really hope your GP starts to listen to you. Sometimes I really do think us mums 'just know' but it's hard to get some people to take us seriously as we're often seen as hypochondriac mums.

The other option would be to find your nearest allergy clinic and get an appointment with a private clinic. Often the private allergists are the ones who also work in NHS clinics. It might speed things up in terms of getting your DC tested, although it is an expensive option.

Take care

geniuswater · 01/03/2012 01:14

Im so sorry you are going thru this :( what an awful thing they are asking you to do to your little one - my son has cmp allergy and it was not until I got referred to the paediatrician at the hospital that we finally got somewhere - the hospital were brilliant and the change in my lo was amazing and wonderful - its getting the referral that is the hard part but I ended up in a terrible state at the gp's practically begging Blush for them to do something because he was so distressed (I still shudder at the memory of how they made me feel like I was going mad, and it had long lasting effects with panic attacks and anxiety problems). It makes me so cross that GP's don't seem to have any understanding of the variety of symptoms that can be displayed and seem to insist that 'failure to thrive' is the only time they will consider any prospect of an allergy grrr (so sorry for the rant - not helpful to you I know, I'm just upset on your behalf!). I would keep going back to the doctors - you have experience already of this surely that should count?! Whatever happened to listening to mum's instinct?!, Their attitude is wrong on so many levels :(

I didn't know that there were allergy expert dieticians - we have now started to try and re-introduce cows milk (my lo is now 15 months) under the advice of an 'ordinary' dietician but again it seems like as nice as she is she doesn't really know what to do and is pretty much leaving it upto us! Confused so I think I shall be asking the paediatrician we are under to refer to an allergy clinic - thanks for the info mumat39 :)

I really hope that you get that referral addictediam, please update how you get on and hope your dd's both get sorted xx

freefrommum · 01/03/2012 11:08

There are new NICE guidelines about diagnosing and treating allergies: publications.nice.org.uk/food-allergy-in-children-and-young-people-cg116/guidance A stool sample is not an acceptable method for diagnosing food allergy. You might want to wave them in your GP's face? Grin Sadly many of us on this forum had to go through stupid battles to get our kids diagnosed (it still makes me angry and upset just thinking about how awful it was).

freefrommum · 01/03/2012 11:10

BTW I meant wave the guidelines in the GP's face not the stool samples (although maybe not such a bad idea given your GP's attitude...) Wink

mumat39 · 01/03/2012 11:31

Geniuswater, ask to be referred to a pediatric allergist. They usually run clinics and have access to dieticians as part of that. In my experience, dieticians are lovely but haven't actually been that helpful. It's the allergy doctors and nurses that you really need.

Sorry for any confusion.

freefrommum, that made me laugh. It's good to know what the guidelines are. It should help us be more empowered when dealing with shite gp's.

Original poster
addictediam · 01/03/2012 11:42

Thank-you for the link to the guidelines. I will be taking them with us!

As dd2 was only 2 days old when I swapped her milk, so I don't know if she was 'failing to thrive although dd1 carried on putting on weight, which was part of our problem in getting the Dr to take us seriously.

OP posts:
geniuswater · 01/03/2012 12:06

We had the problem with the failure to thrive thing as well as my son put on loads but he had so many other symptoms.

Will def ask about the allergist, thanks. And the stool sample waving made me giggle - if all else fails, might be an idea Grin

dairyfreebabyandme · 01/03/2012 17:07

I agree you don't want to put your little one through another day, let alone a month!! It annoys me how inhumane these docs can be! I was once asked how many tins of Nutramigen I thought I might need, because they were expensive!! I couldn't believe what I was hearing. I was actually too shocked to say what I really thought. If the worst comes to the worst (you shouldn't have to I know, but for us it was worth it - I dread to think how long it would have taken otherwise) can you afford to go private? We saw a paediatric consultant who specialised in allergies. We only had to go twice and once the diagnosis was confirmed, we were able to get the prescription on the NHS.

mamij · 01/03/2012 21:58

Similar thing happened here. GP reluctant to prescribe Neocate as it's too expensive (I think they probably have a budget) and every time I went in for a repeat prescription, he would ask whether I've seen the allergist and when would DD1 need to stop using it.

Keep at your GP! and as others have suggested, maybe see a different one until you get an appointment with the specialist.

dairyfreebabyandme · 02/03/2012 09:40

The lack of compassion shown by SOME medical staff really angers me. This Dr is basically condemning a poor baby (and its family) to suffer unnecessarily for a month. GRRRR! Surely the evidence of the mother (baby happier on Neocate than on normal formula) should count for something?

Original poster
addictediam · 02/03/2012 10:43

Well I spoke to a diffrent gp on the phone yesterday as dd2 had some diarrhea and he bought up the milk and then said it was silly to put her back on to cows milk now and said wait till she's older :o he then authorised a repeat prescription and added more tins :) I still need to go and fight her (and dd1s) corner to see an allergy specialist, but I will be going to see this Dr in future.

OP posts:
mumat39 · 02/03/2012 11:22

That's good news. Well done. Maybe speak to the Gp now about a referral. strike while the iron's hot so to speak. It can take a while for apps to come through. I think you can ask the Allergy UK helpline about clinics near you and the you can ask your gp to refer you to that specific one. Good Luck and thank goodness you've found a more sensible gp. you must be so relieved.

babybarrister · 02/03/2012 18:29

This reply has been deleted

Message withdrawn at poster's request.

youarekidding · 02/03/2012 18:51

Glad the 2nd DR saw sense Smile

I find you have to find the correct GP. I have 1 in my surgery who immediatly referred after just looking at a photo of DS reacting. He said there is never any point in risk.

Some barely give you the time of day and 1 even told me he had no idea why DS needed to be on daily AH at that time - er because he's having hives reactions weekly to who knows what and one of those was severe. Hmm

I say where children are concerned you go with your instinct.

Best of luck and congratulations on DD2 Grin

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