prescription for nutramigen taken away - is this right?

[annette.xx]

Hi all

well today I went to the docs to request another tin of nutramigen cos now I am back at work i am getting through a tub every week and half... so I need at least 2 on prescription so I dont have to keep going back for the repeat prescription so often...

I bf morning and night and she has nutramigen in the day ...

doc said that he actually shouldnt have been giving this out on prescription and that they had wrongly prescribed it for so long because I should be paying for it if I want it ...then he looked in his book and read out a few medical conditions they are allowed to prescribe it for...

my LO has never been officially allergy tested just confirmation by smptoms and suprise suprise within just a week her reflux had improved dramatically and she had her first normal non frothy nappy!!

so what do I have to have to get it on prescription - it seems unfair that I know of people with babys less intollerant than jasmine that get shed loads of tins on prescription!!

Is this correct though - is it ok for him to make me pay for it? Obviously in other countries you pay I know but in the UK we have the NHS for this reason - we pay our NI every month...

does anyone else know more on this?

also does anyone else out there pay for nutramigen or neocate in the uk?

please any info would be great!

Annette.xx

[annette.xx]

is it true that it will cost me £12 for a tin!!!

oh my - I just feel like crying now - I just dont get it...

Annette.xx

[scarlettsmom]

Oh goodness , that's awful   

I'm not familiar with the NHS as I live in the US, but would be DEVASTATED too since it obviously made such a huge difference for your LO?   Can you ask that the prescription remain while you get a referral to a ped allergist or a ped GI?  Is there an appeals process in the NHS? 

Big (((hugs))) I can imagine how upsetting this must be. 

Hopefully some of the UK mamas can take a peek and offer some advice.

 

[Mum to F&A]

Hi, I went to the DR because my LO was reacting to normal formula and he too was reluctant to prescibe me formula on prescription.

Apparently there's some debate about prescribing formula on milk. This is because other mum's have to pay for formula and some people think this should include all types. My DR advised me he could provide half on prescription and I would have to pay for the rest (LO reacted to this as well!)

He also mentioned that they were only allowed to provide a prescription up to a yr old (not sure how old your LO is)

HTH Sorry for the bad news 

[Lolly]

It's not quite the same but we get reflux formula on prescription for DD and did too for DS. My GP refused to prescribe it saying it had to be done by a pead or dietician. Both the pead and the dietician say this is not true because it is available OTC so we could just buy it for her so there should be no problem with the GP prescribing it . We get 10 tins a time (they are 400g so half the size of "normal" formula) and the dietician told us with DS that he could be on it until he was 2 if necessary - and he was nearly, so I'm sure DD will be the same.

I would get your Dr to refer you to the pead or the dietician if he won't prescribe it, see if you can get it that way. Are you on a dairy free diet as well to continue with the BF? The NHS is really good when it works well, but it really is such a post code lottery.

Laura

[pamelamcgahon]

We get Nutramigen on repeat, 10 tins at a time as we use so much.  Well, went to dietician last week and she has given us nutramigen stage 2 as we have weaned and also neocate for cooking with as LO wont eat food with it in.  She just sent a prescription request to my GP asking for 4 tins of each to be put on repeat.  We go back in 6 weeks and she'll adjust it then.  There was never any mention about not getting it on prescription.  You can't actually buy it anywhere and I read it was more like £30 a tin!  I'd change GPs or ask to see a dietician.  We never had MSPI allergy confirmed as they CAN'T at this age.  It is all trial and error, illimination etc. We did start on soya formula and you can buy that but both soya and hydrolysed say to be used under the care of a doctor.  I am UK too!

[annette.xx]

well they wouldnt budge - its on her record now and they wont give it - she has been without it for just over a week now - doc says that at this age 13 months she is fine without the milk - they get everything they need from food according to him - he said that even if I stopped BF today that she would be ok...

So I am desperately trying to get calcium from other sources into her - rice milk is fortified with calcium so I can get a bit in her this way and I darednt stop BF now cos I feel like thats my only safety net...

I am so dissheartened but I have no more fight left - without going into too much detail I suffer with PND and have a panic attack everytime I go near the docters - so for now im just going on their advice and hoping its all ok!!

honestly I know I sound so pathetic but thats just my reality and I will have to just deal with it...

Annette.xx

[Lolly]

{{{HUGS}}} to you. You can only do what you can. I know with DS looking back I should have done things differently with the Docs and his meds but at the time I did what I could.

If it's any consolation my friend's little girl was EBF til 6 months and point blank refused any type of bottle, would only drink from an open cup. So she had very, very little milk for a long time until they got her on cows milk closer to 1 yr,  but she is the brightest, sharpest 3 yo I've come across!

Laura

[annette.xx]

ah thanks for your reply - Im sure she will be just fine - im probably worrying for no reason!!

Annette.xx

[scarlettsmom]

Annette - big big (((hugs)))).  I SO know what you mean about PPD, and panicking w/dr's - I have been there and it can be very overwhelming.

Honestly - a baby can get all the calcium it needs from solids, but I would suggest getting an appointment w/a ped nutritionist if you can because it can be tricky.  Fortified rice milk w/coconut milk, or almond milk, would be a good bet (almond milk has a good amount of calcium in it).

here are a list of calcium rich, non dairy foods..

    * Salmon
    * Tofu
    * Rhubarb
    * Sardines
    * Collard greens
    * Spinach
    * Turnip greens
    * Okra
    * White beans
    * Baked beans
    * Broccoli
    * Peas
    * Brussel sprouts
    * Sesame seeds
    * Bok choy
    * Almonds

..and here are some calcium fortified foods (I'm assuming no other allergies?)

    * Calcium-fortified breakfast cereal, including General Mills Whole Grain Total, Total Raisin Bran, Total Cranberry Crunch, and Total Honey Clusters, all of which have 100% DV of calcium per serving!
    * Calcium-fortified orange juice
    * Calcium-fortified soy milk
    * SunnyD with Calcium (most SunnyD products don't have calcium, so look for the one that does if your child needs extra calcium in his diet)
    * Instant oatmeal
    * Calcium-fortified bread or English muffins
    * Calcium-fortified drink mixes such as Pediasure or Carnation Instant Breakfast
    * Other calcium-fortified breakfast cereals, including General Mills Golden Grahams (350 mg)

..if you are still nursing the baby will take all the calcium it needs from you, but YOU need to take a calcium supplement and make sure you're getting enough.  

 

[scarlettsmom]

...oh, and    to dr for not renewing the script or getting something similar.  That really stinks. 

[babybarr]

We get wysoy formula on prescription - DS is 20mths old, we got nutramigen as well for a while too.  Have you asked the pharmacist?  Also there must be a "body" that regulates this - it's odd if some are allowed and others aren't. 

Thinkinh of you.

[Jimbob]

My son is 5 years old and we have only just this month stopped getting neocate advance on prescription. James was originally on neocate as he is allergic to dairy and soy (although recently outgrown soy)which was causing severe eczema amongst other things. At around 2 James developed a severe food aversion due to all the allergic reactions he had, therefore developed a negative relationship with food. James is now finally eating enough that we have moved to rice milk.

When James was first allergy tested and we found out the results they said that he would more than likely be on neocate until at least 2. I think it is awful that you have been put in this situation. We did have the backing of a paediatric consultant and dietician at the hospital but that really should not be needed. Could you speak to your health visitor? Some are good with these things, ours was not but others at the clinic were.

Kelly

[Mashi]

Annette I can't believe I am only seeing this now!  Sorry to hear you've been going through this.

The unfortunate thing is that in the UK each of the trusts has their own regulations, hence the post code lottery you always read about in the papers where some people can get certain drugs and in other areas they will not pay for them.  We had a script for 6 tins of Nutramigen at a time and no one questioned how often I filled it....near the end when we were moving to Germany and I knew I could not get Nutramigen here I started filling it 2-3 days earlier than I needed to and stockpiled the extra tins so that we could bring 10 tins with us! 

But, we did have the paed GI doctor who saw and diagnosed my DS and wrote a diagnosis letter to the GP that said he wanted DS to stay on the Nutram until he was 18 months and then if he failed the milk challenge then until he was at least 24 months - so perhaps with that letter they were in a position where they had to accept it.  I know that the GP would not even CONSIDER giving us Nutramigen until the paed GI diagnosed us in the first place.

And, when we moved here to Germany, health care works different, but our insurance company would not even entertain the idea of paying for Alfare (their equivalent of Nutramigen) or Neocate until DS had a blood test done that showed milk allergy. I refused to put him through that for no reason and they would not accept the letter from the paed in the UK.  So in the end I was forced to do the milk challenge test at about 14ish months and was thrilled when DS did not show any symptoms of MPI any more. So we moved onto cow's milk and that was that.

Have you tried her on cow's milk yet to see if she is still showing signs of allergy? Most LOs do outgrow milk problems shortly after turning one, but there are definitely some that don't -- as I said our paed said 18-24 months was his best guess based on the type of symptoms and reactions DS was having on regular formula.  But, he was wrong and 14 months was fine for my LO.   SO it could be worth a shot with the milk challenge to see how she is.

Soy milk is calcium fortified as well and has all of the calcium LOs need but does not have the fat (it is equiv of semi skimmed milk and she needs the extra fat of whole milk) so you can top up her fats with other things --- easier said than done I realise as my LO won't eat anything that has fat in it such as avocado, etc.  I think soy milk is lacking in a few of the other vitamins that is in milk but again you can make them up with foods, I just can't remember which vitamins it is...perhaps some of the B complex?  I use soy milk a LOT for DS, I buy vanilla flavoured and he sucks it back like it's candy

It really sucks that your GP treated you this way, if you have the time it is worth a letter of complaint to your PCT or the practice manager at the GP's office....I complained to the practice manager about a couple of things with the way I was treated in regards to my post-natal check up, and was treated VERY well by the practice manager and practice nurse when she found out about it, and from then on the practice nurse always had her eye out for me and bent rules to help me out with some other things. 

Let us know how you are getting on...I know you're back at work and must be busy though. Thinking of you xxx

[pamelamcgahon]

I have 9 tins in my cupboard looking for a new home if I could get them to you.  Out dietician has now prescribed stage 2 nutramigen so she told me to dump the stage 1 tins.  Have you asked for a referral to a dietician?  My health visitor referred us (doctor wasn't much help) and when we went the dietician did a prescription request to my GP for the stage 2 nutramigen and the neocate we are also trying.  LO is still only 7 months and I am now wondering what happens after that.  She told me none of the other milks available in the supermarket are suitable as she is under 12 months.  I was also told to get the healthy start vitamin drops and I believe you can get calcium drops too.  Keira can't have any dairy or soya alternatives so we have no option but to use the formula and we are adding it to all her food as well as she wont drink alot.  PM if you want to discuss the tins.  I have 2 larger tins of sma wysoy too but you can buy this and its just a little dearer than regular sma.

Pamela x