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to think it's not good enough.

(16 Posts)
cjt110 Fri 05-Feb-16 14:22:36

My son has a cows milk protein allergy. Diagnosed by our GP at 11m, confirmed by a dietician at 14m who advised we were to stay dairy free for a further 6m due to my sons severe reactions. She advised she would see us in 6 months, assess how he's getting on and potentially start the milk ladder (introducing milk slowly back into his diet). So, he's due to see her in April. Realised this week we havent had an appt. As a side note, I saw a Gynae Dr in Dec and got my follow up appt a week later. Called the dieticians clinic to be told my son is 97th on the waiting list for an appointment and we will get a letter inviting us to call a number to book an appt.

Really quite peeved at this. I dont understand why they say we'll see you in 6ms then actually we will just be stuck onto some waiting list to get a letter to invite us to call for an appt which could be months away! They only hold a clinic per month so essentially, we could be waiting months!

I really wanted to see the dietician in April (my son will be 20m) and start the milk ladder process as we will no longer receive his special formula on prescription, I'm not certain you can even buy it, and even so, my son won't take any other dairy free milk!

Nanasueathome Fri 05-Feb-16 14:48:15

Have you tried oat milk?
My grandson has cmpa and has cows milk now being introduced into his diet
He is 28 months old and is coping well with this but for drinking he has oat milk
He could not tolerate soya milk so oat was a better option for him
It does actually taste really nice

cjt110 Fri 05-Feb-16 14:58:29

He won't have Soya (un/sweetened) or Koko. Someone suggested Oat milk - Is is the Oatly stuff Nanasueathome?

May I ask as a side Q, when did your DGS do the milk ladder and how long did he take to get to the stage he's at?

Osolea Fri 05-Feb-16 15:01:47

There are examples like this all over the NHS, with people having to wait ridiculously long times for appointments or treatments, even when they're in pain and really suffering.

You're right that it's not good enough, but you aren't alone, and at least you aren't being kept waiting for something more serious.

If you don't want to wait, consider going private.

cjt110 Fri 05-Feb-16 15:06:31

Osolea It's more the promise of an appointment within a certain timeframe only for this to be a crock of shit and then we come up against out prescription being stopped and having to try and find something for my son to have

CrabbitArse Fri 05-Feb-16 15:06:56

The Oatly in the blue packaging is the one you need, it's the fortified version. DD was on Aptamil Pepti 2 & refused all other milk substitutes.

cjt110 Fri 05-Feb-16 15:08:22

Crabbit - Thanks. How did you get your DD onto the Oatly - just a straight swap or bit by bit? And has she completed the milk ladder yet?

Nanasueathome Fri 05-Feb-16 15:09:52

Yes, Oatly is the brand name but there are other oat milks as well- Alpro do one and also M&S sell oat milk, often on offer
He was previously on Nutramigen (Devils milk, tastes terrible) and has taken to the oat milk with no problem whatsoever
Now having cheese, yoghurt, butter etc with cows milk base and having no problems
He was referred to Birmingham Childrens Hospital for the allergy and associated eczema and had Nutramigen from 7 months until just before he was 2 years old
From 2 onwards he has been exclusively having oat milk and no more formula milk
Cows milk dairy has been introduced since around 20 months as per dietician and initially he had some reaction but this is reducing and he has little, if any, reaction to dairy now.

Sometimesithinkimbonkers Fri 05-Feb-16 15:11:45

We used the alpro soya 'giraffe' milk and heist added bits to normal milk gradually until it was accepted ... Once accepted we started on simple things like malted milk biscuits! Try one ... Next week 2. SW how they react. Generally if the milk has been cooked it easier on the tummy X

CrabbitArse Fri 05-Feb-16 15:11:54

I started off doing it with a small amount in her formula but then tried a straight swap after about a week & she took it fine. She is now fine with everything apart from straight cows milk although we're still persevering.

nancy75 Fri 05-Feb-16 15:18:44

I think quite often the doctor will say they will see you in x amount of time without really knowing how long the wait will be.

cjt110 Fri 05-Feb-16 15:24:49

Im so scared but so tempted to they the ML myself.

From birth he had dry skin/eczema but we thought nothing of it. At weaning stage he had cheese, yoghurts, small amount of milk in cereal etc etc - all the normal stuff. At 11m I wanted to try him with a small amount of milk to drinking, building it up and dropping the formula. Within 2 days of having approx 2oz of "raw" milk, his eczema was bright red and he was taken to A&E, SATs of 84, temp 39.9, pulse of 200bpm. They reckoned it was a viral infection but on speaking with our dietician, it was defo a milk reaction. We did a small elimination diet ourselves with yoghurts etc and on taking them away, the symptoms we didnt think about at the time (Snotty nose, loose nappies) all went. His eczema even faded. Add the milk back in and they all came back. Saw the GP who advised a proper exclusion diet - Nutrimigen YY to being the devils milk - wasn't tolerated (dont blame him!) and we were put onto Aptamil. 3w exclusion and ALL symptoms gone.

My husband accidentally gave him a biscuit containing milk the day before our dieticians appt and he came up in a pin prick rash with loose bowels. sad Any advice on trying the ML ourselves?

Nanasueathome Fri 05-Feb-16 15:33:57

Cannot really advise as it is your child's health
My daughters' gp was happy to prescribe Nutramigen up to his 2nd birthday and this may be something you need to discuss with your own GP
That then gave more leeway to slowly introduce dairy into his diet and swap to the oat milk

Quoteunquote Fri 05-Feb-16 15:33:57

Phone the secretary of who ever it is you are waiting to see, give them all of your contact details, and say you will come at a moments notice if there are any cancellations.

I find this works extremely well at getting a jump on a long waiting list.

They want to fill any gaps and will happily use a willing participant to do so.

cjt110 Fri 05-Feb-16 15:41:03

Good suggestion Quoteunquote Apparently she is back on Monday (The other secretary must hate me I called yesterday and today! - At least Ill not be forgotten! blush)

Nanasueathome I wonder if there are exceptions to the 2y rule? I wqill ask my GP. Thanks

NotMeNotYouNotAnyone Fri 05-Feb-16 17:03:57

Definitely ask the gp about continuing the prescriptions while you're waiting on the referral, you lose nothing by asking.

I would be wary of trying to introduce an allergen back into your sons diet without medical guidance tbh, but speak to the GP and see if they think you could do some things (like the biscuits) while waiting for the referral

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