Tuesday, 24 January 2017

Should parents of dairy free babies be forced to pay for their prescription formula??

This is the debate that has been raging on our Face Book page, since I posted a link to this article the other day. It's clearly an emotive subject. 

For those of you who haven't read the article, it appears that Croydon Comissioning Clinical Group - who make decisions regarding what services are/not provided by the NHS in the Croydon area -  have made the decision to stop providing baby milk (along with other previously prescribed products like gluten free foods). See the CCG press release here). 


CCG's release.


Please note: This includes milk for children who have an allergy to cow's milk, unless there are other medical conditions.

Looking at the press release, I could see that this proposal had been up for discussion, but that period has now closed. Call me cynical, if you like, but interestingly enough, this period ran over the busy Christmas time - so many people who might have responded may have missed it. 

Also, although to most families £278,000 that they are planning to save is a lot of money - until you look at the size of the budgets they're managing across the board.

The worry for many mums is, that where one NHS trust leads, others may follow and this may soon become widespread across the country - another 'postcode lottery'.

Update: In fact it seems Richmond CCG is considering exactly the same, you have until February 3rd 2017 to respond. Further details here.

It was £25 for a tin of Nutramigen AA, a number of years back, when Kiddo was a newborn. I can well remember the shock I felt when the Doctor asked me how many tins I would require, as... didn't I know how expensive it was?? 

Well, we did, as it happened, because we had to pay for the first two tins - which we obtained via private prescription. 

For those of us who, for whatever reason, have had to resort to using dairy free formula, and know exactly how expensive it can be, paying for prescription baby milk seems a shocking suggestion, but clearly there are those who disagree! 


The arguments for/against

As much as I, personally, am against charging for prescription formula, I can quite understand some of the opposing views, and think it is only fair that all sides be heard. Outlined below are some of the major arguments:


The argument for paying for prescribed milk
The argument against paying for prescribed milk
You could eliminate allergens from your diet and continue to breastfeed.                                                                                                                                                                                    
    





                                                                        
       


                                                                          
       
     1.      Not everyone physically can breastfeed - for a variety of reasons, which I won’t address here.

      2.      Some mothers are advised to give up breastfeeding their allergic child, because the severity of the reaction is too great to allow them to continue whilst the allergens are still working their way out of the mother’s body – we’re talking hospitalisation here!

      3.      When children are dealing with multiple allergies, this can be incredibly hard for a mother to achieve, especially when they can’t identify what those allergens are.

      4.      Maternal medication/serious illness/death – rare but still requires consideration.

     5. Mothers who have to go back to work and therefore have to give up breastfeeding.

     6. Prescription formula is not just required to replace breastfeeding, but is often required to replace cow's milk when preparing food, during weaning - particularly for children with multiple allergies, for whom various so-called 'plant-based milks' are unsuitable.
Everyone else pays for their formula, why should the parents of allergic children be any different?
     1.      Prescribed formua is much more expensive than normal formula - £25 (or more) a tin, when you can buy a tin of normal formula for around £10. In addition, the tins of prescribed formula are smaller, so more are required. For families on, low incomes, it would be unachievable - it works out at hundreds of pounds a month! Even those of us who are supposedly better off might struggle to cope. 

      2.      And also, what about milk allergic children in families where they are at risk of neglect (again rare, but it ought to be considered). In such cases paying for expensive formula might come last on the list of priorities, especially where addiction is present.

     3. Parents of milk allergic children might then be tempted to source milk via the Internet from unknown, potentially unscrupulous persons, which could potentially put their health at risk. Pharmacies will not accept unused tins of prescription milk, even if unopened, for this very reason.
The NHS is struggling as it is and cuts need to be made.
This is true, however, it could be argued that we can all think of things that we consider ‘unnecessary’ that are currently available on the NHS, e.g. medicines which are actually cheaper to buy over the counter than to obtain via prescription, like paracetamol – children’s formula seems to be the wrong place to start making those cuts.
Go out and get a job/better job to pay for it.
We are potentially talking about a huge amount of money, so this is easier said than done (again for various reasons).
Use a different formula, which is cheaper and can be bought off the shelf at a supermarket e.g. soya or goat’s milk.
        1. A large percentage of children who are allergic to milk are also allergic to soya. This is because the proteins are very similar.

        2. A study has shown that 92 % of people allergic to cow’s milk are also allergic to goat’s milk and should therefore be avoided.


A third way??

A third way - popular with many - is that people should pay the 'normal' price for formula and the NHS top up the rest. I do think that even if this suggestion has merits, prescription milk should not be stopped, until alternative routes have been considered. Once it's gone, its gone.

Moreover, it is also argued that having 'free' formula on prescription is only fair, when parents of milk allergic children have to pay so much extra for additional 'free from' products such as  dairy free margarine, cheese, etc. And, what's more, if those children have multiple allergies (many do), and have to pay extra for gluten free, egg free, nut free products as well... well the costs of having an allergic child just go up and up and up!! 


What do you think?

Not sure what to think? Please visit our Face Book page and read some of the stories that our mums  have posted. Please continue to add your comments, either to this post, or to our Face book page. However, I would ask that people remain respectful to other posters.



What can you do?

If this is an issue which chimes strongly with you, there are a few things you can do:

1. As this tweet says you need to contact CCG today at getinvolved@croydonccg.nhs.uk by email TODAY (not much time to get this done). 



2. Keep an eye on YOUR local CCG _Clinical Commisionsing Group, as they may well be considering the same. Richmond are already on the same path. See here for further details. You have until February 3rd 2017, to respond to this one.

3. Write to your M.P and/or Jeremy Hunt - the Secretary of State for Health, who is currently responsible for the NHS.

4. You can sign the petition - the previous has disappeared (due to a misunderstanding) but I suspect a new one could well appear shortly!

5. Create awareness and support, by sharing this info/petition as widely as you can.

This really, really matters, to many mums and their young babies. 

Read Emma's story below - it's in the raw because I literally haven't had time to edit it yet, but actually, it's probably better, more real, that way.

Please do all you can!


Emma's story:

Hiya, 

Sorry if it's a bit rambling... Feel free to edit as required! 

OK, this is baby number 2 with milk allergy. My son did not have his milk allergy recognised until he reacted badly to egg at 8months and paramedics had to come. We got a hospital appointment when he was 10 months and after talking about how he had been as a baby (V sicky, blood and mucus in poo, v unsettled, crying for hours on end, raw Excema,  wheezing) they said "not saying you were fobbed off by gp/hv/midwife etc.. But you were!  He is also soya free now. 

Understandably I was worried my new baby would have allergy but everyone said she was fine (again) and it was probably just colic (again) only at 10wks after blood in poo, constipation, diahorria, V unhappy baby and mummy did I get 2nd doc opionion who referred us to hospital and they confirmed milk allergy and put her on nutramigen. As she had pretty much stopped feeding as she associated milk with pain she did loose weight and it took a long time to get her feeding a bit better and up to second centile. At 6 months we were told to switch to nutramigen 2,and whether it was coincidence or she just started feeding more, I realised we were starting our 4th tin by only day 8. I realised I only had 4 more tins and as it takes doctor up to 48hrs to issue prescription and pharmacy have to order it I got on the case to ask doctor for more milk. When I rang next day to see if it was ready reception told me Dr had left note to say she was only allowed 8 tins a month and I would have to get appointment to discuss.  The next day all the appointments were gone so went the say after. My husband and I calculated how many tins a month my baby would need if she drank 35oz a day, (which is the amount the consultant said she should b drinking at 4 months) with no wastage (u can only keep it for hr once she starts it) The doctor listened to me, but said I should be weaning her, he was going by government guidelines, did I realise it was £11per tin,  and I was spending public money. He made me feel awful. I stayed calm and explained I am only trying. . to feed my baby and I actually started trying to wean and her at 5 months cos I thought maybe she would be better eater than drinker, but so far she was not interested. He reluctantly issued me a "one off prescription" for 8 tins but would not issue any more without letter from consultant.

I rang the consultant that day but he wasn't available and they said he would call back. I was then admitted to hospital due to my asthma and couldn't handle chasing it as think the stress poss contributed to me being poorly. I have actually had a phone call from consultant today and he said it was not a problem. He worked out how many tins she would need the same way I did. He did say to keep trying the weaning as he said it's common for babies with allergies to develop food aversions but said she could have 13 tins in a month and he would write to doctor.  So finally it's sorted and panic over.  I just found it so hard last wk when I felt just like when I knew she was allergic but couldn't get anyone to listen to me. 

I think we have enough to deal with and enough worries with our allergy babies without extra stress like this.  I would love to have a baby that is not allergic, but that's not the case. 
I hope other people manage to get the help they need. 

Kind regards, 
Emma 




FAQ's: Where can I find a dairy free (free from) birthday cake?

Okay, so hands up - when it comes to birthdays, not all of us are born a Mary Berry, so who loves the idea of a ready made birthday cake??

Add your candles... and hey presto - you're all good to go!

Well, maybe not everyone, but I find I do a bit of both - I need one for the party and one for home and oh yes, another for school! No wonder I get very little blogging done when birthday season comes 'round! 

Sometimes I go all out like this:



This cake *may* just have caused me a few nightmares!

But sometimes, my fave Marry Berry Swiss Roll recipe (see here) just has to suffice - very quick, very easy and can be dressed a number of different ways! 


My absolute fave cake recipe!

Birthdays being the normal manic thing that they are, for at least one of these I love to cheat - to take the pressure off. Fortunately, as my kiddo is only dairy free it's a bit easier than I thought to find a dairy free cake... and from the supermarket too!

Asda, Tesco, Morrsion's and Sainsbury's all sell a fairly big range of celebration cakes and the good news is that quite a number of them are dairy free. Even Waitrose is now getting in on the act! 

Well, I say 'dairy free' - they are by no means marketed as 'Free From', but no milk or dairy products are listed in the ingredients of those that we've tried, and no 'may contains' either. And, maybe we've been lucky, but Kiddo has been quite sensitive to traces of milk and no unpleasant reactions have followed.

We've been 'lucky' so far - in that our Kiddo has been able to get the cake of her choice for each of her birthdays! She has already had this Lightening Mc Queen (Disney Cars) which we bought from Asda:



This is the bigger one!
Available for £10.00. For ingredients see here.

This Disney Frozen cake (bought from Tesco, but also at Sainsbury's):

Not quite as big when it's out of the box!
Which costs £10. Ingredients list here.

And also this Despicable Me Minion cake:

Not that big when out of the box either!

Serves 20 - just! But cost just £10.00. Ingredients here.

However, I've not been able to eat a single one of these cakes, as none of them are gluten free. Unless it's soya lecithin, I'm also soya free - which causes The Hub a fair bit of trouble when it comes to my birthday! 

This year, as so much was going on, there was NO cake for my birthday - cue sad face (that said we were about to go on holiday and The Hub was stressed to the eyeballs with stuff going on at work)! 

And THIS despite the fact that it's now become relatively easy to find a Free From cake - in fact all the major players now sell something gluten free (apart from Waitrose, of course) although Tesco's... well they now sell a nice looking little selection in their Free From department, but none of these are dairy free - cue another sad face! 

As of yet, despite the big Free From battle that is going on between the supermarkets, none of the cakes in any of the supermarkets are egg free. I am somewhat bewildered why it has not yet occurred to them that this section of the market remains untapped - especially as it would also appeal to Vegans. So if you are egg free, I'm afraid you will either need to contact a free from or Vegan baker like Hannah Banana (her cakes DO look amazing), or make your own, in which case, check out Lucy's Friendly Foods - she has some amazing dairy, egg and soya free recipes, including meringues!! 

However, on the plus side, Sainsbury's selection is definitely nut free too!


So lets have a little look at some of the options we've tried!

Asda

This cute little Madeira cake, priced £8.00, is just that - 'little' (678g). However it was enough just for us. Kiddo and I enjoyed it. The Hub not so much. It's free from all of the top allergens as far as I can see from the ingredients list, except for egg. However it is only described as 'Gluten Free' and 'Dairy free'. You can also get it in chocolate. However, the chocolate version (ingredients here) is made with soya beans, so is a 'no-go' for me.


Quite dinky!

Asda also make some lovely looking party cup cakes (£3.50 for 9), but sadly these are not dairy free (see here).



Morrisons

Again described as free from gluten and milk, it appears from the ingredients list to be free from all of the top allergens except egg.

As you can see, it is not decorated, however, Kiddo and I enjoyed the taste. It's quite dinky again, despite being double-layered (540g), but costs just £4! 


Of course you can see through this box, so...


... here it is in all its glory!


But, by far and away the winners in the ready made birthday cake stakes, are, for me at the moment are...

(cue drum roll)


Sainsbury's!!

Purely because although not all are suitable for us, they now have a range of FOUR cakes that are ALL dairy, gluten, and nut free! 

We only have tried out this Madeira one (as pictured at the top of this post), because it is also soya free. It's priced £8.00 for 663g of cakiness, and would appeal to the more girly types among us - Kiddo loved it for sure - both the look and the flavour! 

The only one of the top allergens listed is again... you've guessed it, I'm sure... egg! 

This one, priced at £9.00, is perhaps more suitable for little ones (755g). It is also a madeira cake and really quite attractively decorated.

There is quite a nice size more adult-looking chocolate cake (743g), but it is made with soya protein, as well as the dreaded-for-some egg. It is priced at £8.00.

There is also a tray bake (726g) priced £7.00, which is a nice idea, for sharing -maybe with a class or toddler group, but which sadly contains the dreaded soya again (boo hiss). So I'm afraid those too are off my list!!

Sainsbury's, like Asda, now have some Free From cupcakes (6 for £3.50). They are plain and ready to decorate, but are not dairy free (sigh).


So there you have it! 

Hope you've not been left too hungry after looking at all those cake pics and that this post has given you the information you need. 

Let us ALL eat cake!!!




Related posts: 











Please note: 

This post is not an advert. I have not been paid to write this post. I am not sponsored in any way, even by advertising. I do not receive products free to review, although I have often been offered them. This is to try and maintain an unbiased approach. All views expressed are my own (unless I've asked for The Hub's or Kiddo's).



All I'm saying is... NEVER again!!


Saturday, 21 January 2017

Our Battle with Tongue-tie

I'm taking the rare step of  writing about something not allergy-related, but which was a big part of our story in the early days - tongue-tie. Oh the things I so wish they had told us in ante-natal class!

Tongue-tie - just in case you don't know - is where the tongue is anchored down in the baby's mouth by some extra skin, or just membrane really, in the early stages. In our case it was like a line of skin, under the tongue. It stretched down the middle, from the back to the front, which tightened the tongue, forcing the tip of 'Baby's' tongue into the classic heart-shape. 

Once upon a time (so I have heard), all babies were checked at birth and it was common-place for midwives to snip a tongue-tie there and then. However, these days, some professionals believe it will just grow out by itself, and should be left alone, whilst others believe that it hinders a baby from feeding (whether by breast or bottle) and should be snipped. It's so confusing when medical professionals cannot agree on a given subject, following our experience... well I'll let you decide for yourself...


How it all began...

On the first morning after our beautiful baby was born, she was checked over by a pediatrician, who soon spotted her tongue-tie. 

'But it's nothing to worry about he assured us, she's got such a strong suck.

This he demonstrated by sticking the tip of his finger in her mouth. Instantly her sucking reflexes kicked in. We took his word for it.

At that time, and in that area of the country, tongue-ties were just not seen as a problem... 

'Oh don't worry, she'll grow out of it.' 

...we were told by the private pediatrician we saw four weeks later. But we were worried!

By this time, my boobs were already looking battle-scarred and feeding was getting even more tricky than I had found it in the first place! I was so desperate to breastfeed, but was dreading each and every feed. The pain was so excruciating, I quite often cried aloud, as she latched on. Meanwhile, 'Baby', oblivious to my agony, was feeding quite frequently...

'Feed through the pain,'

...was the frankly quite unhelpful mantra, I came across. But, feeling unable to cope, and on the verge of giving up altogether, I soon began to express off my worst side, and deliver the expressed milk through a bottle - hoping it would enable my (by now disintegrating) nipple to heal, as I just couldn't bear it. 



It wasn't meant to be this way...

I nearly gave up...

Not being able to express more than an ounce or so at a time, I reluctantly began to top up 'Baby's' feeds with a specially prescribed dairy free formula, but this was not what I had expected and was not at all what I had wanted for my little one. All my naive little first-time dreams of motherhood lay fragmented on the ground - HELLP syndrome leading to an induced early birth, forcep delivery, jaundice that had us readmitted to hospital, milk allergy and now THIS

At my wits end, and aware that The Hub was beginning to wonder who on earth this deranged woman that he'd married was. I'm pretty sure he hoped I'd give up and just switch to formula, but didn't dare say, for fear of upsetting me even more. I felt there really MUST be a solution to this thing and I was Googling left, right and center!

Tongue-tie came up every time - 'Baby' ticked all the boxes - including the 'clicking' sound as she tried to feed. But how to get help, when all the experts said it wasn't a problem??


The solution...

Fortunately, the Health Visitor, came to my rescue - she told us that in the next county there was a La Leche League breastfeeding counsellor who could assess us, for potential surgery. Desperate for help, we checked her out. Her room was packed with other unhappy mothers (and fathers) with their babies, all desperate for help 
and she was amazing! It didn't take her long to decide we were suitable and we were put down for the 'snip' by a maxillofacial surgeon.

I have to admit, I had my reservations - about my little one being strapped down and... what if the surgeon got it wrong? This was a daft thought, but I was pretty sleep-deprived by this stage - pumping and sterilising was going on day and night, so it was fair to say I was missing a quite a lot of sleep! Bizarrely driven on by my teaching instincts - I didn't want my child to be potentially mocked at school for having a speech impediment - we went ahead.

As it turned out, my doubts were assuaged, the moment we fed following the op (I say 'op', but because she was so young, it was actually over, quite literally, in seconds). We were taken to a side room to try her out, and straight away I could tell her gape was wider and she fed properly latched on - for the first time ever - without being forced on (as one nursing assistant had tried to do). 


Hallelujah!

The other thing I noted, was that her cry had changed - no longer did she wail 'Laa, laa,' she seamlessly changed to the 'Waaa, waa' sound, which you normally hear from babies.

Unfortunately, having got into bad habits, 'Baby's' latch slowly slipped back to her normal position and try as I might, I couldn't get her to feed the way I was 'supposed' to (I can't help feeling that if it had happened at birth, her latch would have been fine). BUT as my boobs healed (with, by now, the help of antibiotics, as I had developed an infection), the pain began to go, I was able to step up feeding, get her back off the bottle and properly breastfeed - the way it should have been all along!


Following on...

Since then, I have met soooo many other mums in the same boat, including, more recently, my younger sis', who has just been through the exactly same thing. For her, unfortunately it has taken multiple appointments to get properly diagnosed, and the operation, taking place at a later date, was far more traumatic than 'Baby's' had been.

Yesterday, I came across this petition online. If, like me, you would like to prevent others from having to go through the same problems, please sign this petition, and then share it as widely as you can. 


Thank you!

And if you're struggling with breastfeeding too, for whatever reason, I would heartily recommend the following:

La Leche League

Kelly Mom


Further reading:

NHS Choices - Tongue-tie

La Leche League - Tongue-tie


Thursday, 19 January 2017

Happy New Dairy Free Year!!

Happy New Year!!

This pic is a bit of a metaphor for my life, at the mo - muddled and mismatched, with bits missing!


Okay, okay, I'm a bit late I know, but Christmas was sooo busy and I needed to get the Kiddo back to school, myself back into routine, and my house back into some kind of order, before getting back to blogging again! First two achieved, ho hum on the second!

You may have noticed an absence of blog post recently, well the last three months really, and it's not because I didn't WANT to, it was simply a case of not-enough-time-in-the-day. Face Book and Twitter might have got a cheeky little look in from time to time, but certainly not to keep up with longer messages and blog posting - hence lots of posts from the archives on FB, which although perhaps helpful for newbies, not so great for those who have read them before! I've heard it said that young people only get done 1/3 of what they actually plan to do. Well I'm not so young as I was, but it's certainly true of me!


So where have I been? 

Well apart from going on holiday (post to follow), it's been loads of mundane stuff shopping, washing etc. etc. (especially following the holiday), plus birthdays, plus Christmas, plus visiting family, plus seeing friends, plus running a toddler group, plus caring for our pets, plus, plus, plus...

Our house has really suffered - not helped by a lively Kiddo, who is apparently brilliant at tidying and being helpful at school, as well as being incredibly well-organised, but at home?? Not so much!! 


I think a clear out is definitely in order!

This, despite countless boxes, drawers, cupboards etc. being provided for her storage: 


Eeek!



So how did I get into this muddle?

Last year was not a great year for many people - certainly, personally, there were some spots where I was quite poorly, which didn't help the smooth operation of our home, or anything else for that matter. It has felt like fighting an uphill battle to get my health and life back on track. So my plans/resolutions for the New Year are these:



  • to clean up/reorganise my house
  • to eat more fruit and veg. in the hope that my body will co-operate (I've noted that eating fresh salad every day and drinking orange juice helps)
  • to get more exercise 
  • to get enough sleep (bad sleeping patterns haven't helped, I think)
All these are so that I can stay healthy enough to get everything else done and be the wife/mother that I want to be.


Hmm! Not setting myself too high an expectation I hope! I don't like setting myself up to fail (note - no diets mentioned here)! 

So, apologies to those who have expected replies and had to wait for them - hopefully I'll catch up with you soon.


Moving onwards...

Meanwhile, on the plus side, 2016 brought new breakthroughs in understanding of how allergies develop and how they might, in some cases be prevented (particularly regarding the prevention of nut allergies*), as well as bringing lots of great new products our way. Some of my personal favourites, this year, were: Koko's new dairy free yogurts (see here), this great new dairy free ice cream by Alpro and these new dairy free choccies by Kinnerton - yum! 


Now, I'm really looking forward to all that this new year will bring, how about you?? What are you looking forward to this year??


Whatever your hopes/dreams/aspirations, I sincerely hope you will have a happy and healthy New Year!



* NB: For more information about the prevention of nut allergies, please see Dr Carina Venter RD's  excellent blog


Wednesday, 30 November 2016

Deck the Trees with Dairy Free Chocolate... Tra la la a la, la la la la!

In a previous post (see here), written a few years ago now, I shared with you my efforts in making my own Christmas tree decorations - dairy free chocolate ones being in short supply in those days. These days, I know you can get some from D & D Chocolates (an online company that only makes free from chocolate - see here), but I still love the fun of making my own... and so does 'Baby' - well 'Kiddo' these days!!

However, having munched through the supplies of chocolate coins I had bought from Tesco (yikes) and found that Sainsbury's had mysteriously suddenly not got any (after having them on the shelves ALL year), I realized an alternative was required!! Hence this post!!

Ta da! An alternative has surely been found - in the shape of Tesco's new chocolate fondant truffles! And very nice they are too (I've been taste testing, don't you know)!! I got my inspiration from some Christmas Tree decorations I designed for the craft table at the Toddler Group I help run.

Now I've just got to find some discipline not to eat all truffles too! :)


Where there's a will, and all that! :)



What you will need:

Box of Tesco Dairy Free Chocolate Truffles
Star shape gift tags 
Glue Dots
Stick-on Gems



Using gift tags makes this so easy peasy, that young children can easily make them.



How to make your decorations:


1. Stick two/three glue dots on the back of your truffle - it may help to make sure you cover the bit where the foil joins at the back - you don't want your choccy falling out after all!
The danger is that the truffle wrapping might come adrift!


2. Attach your foil wrapped truffle to the middle of a star-shaped gift tag - mine are from Waitrose (on offer, at two for three), but I'm sure you can find them elsewhere, either that or you can cut and make your own.
Already looking good!


3. You could leave your decorations just as they are, but I love a bit of bling. If you do too than you can embellish your gift tag with stick-on gems, like so:

Bling! Bling!

4. Now don't forget to tie the ribbon at the top of your tags, and they're all ready to hang on your tree!


Now to actually put my tree up... ho hum!!



Related Posts











Please note: 

This post is not an advert. I have not been paid to write this post. I am not sponsored in any way, even by advertising. I do not receive products free to review, although I have often been offered them. This is to try and maintain an unbiased approach. All views expressed are my own (unless I've asked for The Hub's or Kiddo's).