Help. My Child has Coeliac Disease.

We have been so lucky as parents so far. We have two beautiful, bright and healthy girls, who have had barely any interaction with health services. (That’s not entirely representative of Cora’s health but more on that in another post…) We have never had to dash off to A&E with injuries or illnesses but earlier this month we received the news that Bea has Coeliac disease and quite suddenly we have had to look at life from the perspective of a parent with a child with a chronic health condition.

The source of our first meltdown from Bea that she couldn’t eat something because it wasn’t GF.

That might sound a bit dramatic, but even as a doctor, I had forgotten much of what I learned at medical school to do with the longer term implications of the diagnosis. For those of you reading who don’t know, Coeliac disease is an intolerance to gluten, which beyond just causing symptoms like bloating, altered bowel habit and stomach aches, which people with a gluten intolerance who don’t have coeliac may experience, also affects the actual gut lining. The normal gut lining when looked at on a microscopic level has folds like ‘fingers’ all over it which increases the surface area over which you can absorb food. In coeliac disease the gut reacts to gluten and becomes completely smooth so food can’t be absorbed properly leading to vitamin deficiencies and malabsorption, which in children impacts on growth. There are also longer term effects, if untreated, like infertility, links to lymphoma and bowel cancers and other autoimmune conditions like diabetes.

So far so rubbish, but at least its easily sorted with a gluten free diet right? That is true but what I wasn’t prepared for was the level of exclusion of gluten that you have to go to. In the last week, the most common response to the news when we have shared it with friends has been, ‘at least you can get loads of Gluten free foods around here’. Where we live in Manchester is famous for being a Vegan and Vegetarian haven. We actually have a whole vegan supermarket, I believe the first in the country. So it’s long been popular with people who want to follow anything other than a ‘traditional’ diet whether for health reasons or faddy ones. And therein lies the problem, that a significant condition can be misinterpreted as a faddy perceived intolerance and not taken seriously.

In fact as we start to bring ourselves up to speed with what we need to do we have learned that keeping gluten free extends right down to having separate butter and toaster for Bea to prevent cross contamination of her gluten free food with regular bread or gluten containing products. Even simple things like making a quick sandwich for both the girls at home means two chopping board or prep areas, and concentrating on the knives and butter to make sure we don’t pick the wrong one up. We are getting to grips with it, but initially it felt completely overwhelming and stressful. I have a whole new sympathy for parents of kids with allergies, despite having been dealing with Cora being dairy free for the last 3 months, and egg free for almost 2 years, which although tough hasn’t had as serious consequences if a mistake is made. So yeah, one dairy free kid and now one gluten free kid is going to make food quite a minefield.

Couldn’t not snap Bea with this giant B outside Birba, Palm Springs.

Aside from the science and the stress, I’m broken hearted for her. Initially she has adjusted really well, as when we have been at home we have made sure she hasn’t missed out on anything by getting as much gluten free replacement foods as possible. Unfortunately for her the bulk of her favourite foods are wheat based – cereals, bread, pasta etc; We have had to switch to a packed lunch as school can’t provide completely gluten free coeliac friendly meals for her. We endured our first total meltdown on the last day of term before Easter (only a few days after her diagnosis was confirmed,) when the class had made rice crispy cakes which I couldn’t let her eat. ‘Rice?’ I hear you say… well as it happens, like many seemingly innocuous foods, Rice Crispies are made with malt syrup which comes from barley, which contains, you guessed it, gluten, so they were off the cards. And that’s before I even consider the type of chocolate etc. She broke her heart crying (and raging) that she couldn’t have it and I saw a long road ahead of us trying to educate her on why she needs to not eat these foods. Even now I worry how she will choose to manage it when she is an older more independent child or young adult.

One very happy young lady finding GF, Vegan pancakes at Palm Greens cafe in Palm Springs that the whole family could eat 🙂

Since her diagnosis we have also navigated the first kids party (fortunately at a local soft play which is used to dealing with dietary needs in their cafe,) and then shortly after we headed off to America on our recent trip to California. You would think they would be leagues ahead with dietary needs there but in fact it was more more difficult than it was here. Our first stumbling block was in the Pret at the airport (of the infamously slack allergy approach which lead to the death of a young girl who had a peanut allergy, which they are now I believe seeking to rectify,) where there wasn’t a single gluten free option for us to buy for her to eat. We have learned that preparation is key – not great for us as we often buy food on the go when we are out and I am not what you would describe as an organised mum, more of a seat-of-your-pants winging it type. Fortunately we had taken snacks but while we were away we made sandwiches nearly every day so we had options. We found American restaurants didn’t label their menus and when you ‘asked the server’ they weren’t clear on the requirements or provisions for the level of gluten free food we required. Being gluten free is huge over there and as a result there were options but many were very adult (Salads etc) which Bea just wouldn’t eat and I worried about her getting enough protein and carbs for proper nutrition. Lots of places had a GF option but when you asked if it was prepped separately to avoid cross contamination from gluten containing foods, they couldn’t or wouldn’t do that. It made eating out pretty stressful, both for us trying to choose the right thing, and for Bea who often didn’t want to eat what she ended up with, either because she didn’t like it, or because she just didn’t want GF pizza that night, which I totally understand. It must suck not getting to choose your food. Fortunately the supermarkets had lots of options but rather than being in a ‘free from’ section they were all intermingled so shopping wasn’t straight forward either.

The Baked Bear in Pacific Beach, San Diego had GF DF ice cream cookie sandwiches so both the girls were so excited to enjoy a treat!

Since her diagnosis, we are finding our way with options at home and out and about locally. I’m trying to focus on making sure the default quick option isn’t sweet as a lot of GF ‘snacks’ are sweet rather than savoury – its easy to find GF cake for example when you’re out but not GF bread sticks and hummus. I’m working on being more organised and meal planning (so not my forte,) and we are learning all the time. We also have a dieticians appointment in a couple of weeks which should help with some tips I hope. It’s also hard trying to make sure it doesn’t impact on Cora. In time she will also have to be tested as there is a cross over between some siblings, as will Pete and I, but theres also the headache of making sure she still gets gluten in her diet so as not to create an intolerance, when it’s easier to just make everything GF.

Thanks for listening readers. It’s easy to portray an ideal life through Instagram, but I wanted to share this, partly out of looking for help and ideas. I know there must be coeliacs out there amongst you or your families and friends and I would be super grateful for any tips, ideas or just general solidarity you’ve got to send my way. As always, the strength in blogs and social media is in the community, for which I’m always grateful.

Also, if parenting isn’t your thing (and you got this far!) I shared a shopping round up on Instagram Stories today which I saved to highlights, of some gorgeous summer pieces I want to buy! I’ll also put a post up on Insta to make it easier to comment on this post if you would rather comment there than here.

Happy weekend readers,

xo

How to Breastfeed…

I’ve thought about writing a post like this for a long time, but Breastfeeding is such an emotive topic I’ve shied away from discussing it. That and well, breastfeeding sometimes doesn’t leave you much time to write blog posts about breastfeeding. 😉 Theres so much I could include in this post that somehow my thoughts have never quite made it to the page, but I decided to bite the bullet and make a start.


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Let’s get it out of the way before I begin. I am an unashamedly passionate breastfeeding advocate. But to be completely clear, that is simply because I hope for everyone to have the lovely experience I have had feeding my two girls. I’ve had a relatively smooth ride feeding my babies, but I appreciate that not everyone does and in my experience, although it’s improving all the time, breastfeeding support is often not as good as it could be when people really need it. These are the key principles and resources that I felt helped me both prepare and persist with breastfeeding, as a new mum and feeding a second time around, along with the many months of even less glamorous feeding a not so little baby or toddler. I’d love to hear if you have any amazing tips that you found invaluable too.

Make your wishes clear from the outset.
If you do want to breastfeed, make your wishes clear to the delivery team around you from the outset and your family and friends. Write it down in your birth plan that you want to have immediate and uninterrupted skin to skin, and want to try and breastfeed within the hour if possible. This is totally possible even if you’re having a C-section – when I had Bea the team were so supportive bringing her straight to me on the table, where she stayed for the duration, and getting me feeding straight away in recovery. The sooner you can start the better, in terms of calming and nourishing your baby, and it’s good for expelling the placenta if you’ve had a vaginal birth. The sucking stimulates hormones which promote the uterus contracting down once the baby is out, also reducing the risk of haemorrhage.
You may wish to consider what your wishes are if you or the baby are unexpectedly taken ill and have to be separated – this is a good discussion to have with your partner and make your wishes clear to them if you can’t be present to express them.

Prepare the people around you.
When I planned to breastfeed for the first time with Bea I had no immediate family members who were breastfeeding or had breastfed for any significant length of time. The culture was very much around bottle feeding and that had a big impact on the kind of help I was offered. For example, if you bottle feed and you’re tired, someone else can give the bottle to the baby and cuddle them while you go get some sleep. People also always love feeding a baby and often put pressure on to be able to do that for you, encouraging you to express or add formula in for that reason.
If you are breastfeeding then the kind of help you need is completely different, you need to bond with and focus on the baby and feeding him or her, and the offers of help need to be around looking after you as you might not be able to! Ask friends or family to bring prepared food, do a quick shop, take the dog for a walk, put the recycling out, put a wash on, hang it out or clean the house. If it’s not your first child ask them to play or do an activity with your older children either in the house or take them to the park. Your priority needs to be the baby and their priority needs to be facilitating you doing that and helping to do all the things you can’t, (or maybe can do, but it would be lovely not to so you can spend those precious first few days and weeks enjoying your new bundle,) as a result.
I also felt I needed to prepare my mum particularly, who I knew would be worried if I was struggling with tiredness because of all night feeding marathons or frequent wake ups. I wanted to make really clear that I expected that and was prepared to deal with it, and that I didn’t see tiredness as a reason to stop feeding or to give a bottle, so it wasn’t put forward as a well intended offer of help. (I should add here, in the end my mum didn’t have to worry as Bea was a dream sleeper despite being breastfed, it was Cora who brought us the challenges second time around!)

Arm yourself with knowledge
The first few days after having a baby can be really tough. You’re physically exhausted and often sore and after having gone through a long period of exertion in labour, just when you need some sleep and rest to recover you enter a period of intense sleep deprivation. Aside from the physical drains, your emotional reserves are low as the hormone rollercoaster kicks in, and you may feel anxious and doubt your decisions or your ability to breastfeed. Getting a few key facts straight in your mind can help you feel more equipped to make decisions when other health care professionals start to get involved or even give you strength to keep going on that 4th night of sleep deprivation when your milk still hasn’t come in and you can’t think what to do for tiredness and worry.
A bit of reading in the weeks before you are due can be really helpful with this I think, and I particularly rate this book: The Food of Love. It’s funny, real and just quite brilliant.

Key things to remember are:

  • Your baby has a super tiny stomach when it’s born and that slowly slowly slowly expands over the course of weeks as the quantities of milk it receives increase. It doesn’t need a 100ml bottle of milk at birth to feed it.
  • The Colostrum your body produces before the milk comes in is in tiny, tiny amounts but the nutrients in it are so complex and fat rich that it’s enough to sustain your baby in those initial days before your milk does come in.
  • Milk is produced by the body according to demand so even though your baby may be on the breast and sucking a lot in those early days before the milk appears, it’s not a sign of hunger, but a normal reflex. Your baby is working with your body to tell it to produce the milk. Give the baby a bottle at this point and it stimulating that reflex and the body isn’t prompted to make milk. It’s not quite that simple as there are other factors involved in milk production, and one bottle wont halt the whole process, but it’s a really important connection to make that your supply is made according to demand, from your baby.
  • The milestone of your milk ‘coming in’ – the point where your breasts actually start to produce breast milk for the baby can take several days. It can be sooner with a second child or when your body is particularly quick off the mark, but after a C Section when your body was caught by surprise that the baby was coming out, or if you had a long labour or traumatic delivery and are exhausted, that can slow things down to. As a point of reference, I had my first daughter on a Monday via C-Section. I think my milk came in on the Friday. This is how human beings were designed and it works just fine, don’t feel pressured into giving a bottle if you don’t want to because your baby is ‘hungry’.
  • Babies don’t go to the breast just for food. Breastfeeding is about so much more than nutrition. It is safety, comfort, connection, soothing, pain relief and more so when your baby wants to latch on, it might not be because they’re hungry. Trying to get to grips with that when you’re touched out, tired and fed up is one thing, but also having to fend off comments from others about how baby ‘can’t possibly be hungry‘ or how ‘you’re making a rod for your own back,‘ can be really stressful in an already confusing time so having some knowledge about normal infant feeding habits can really give you some confidence to stick with it. Little Peach is a really great Insta account for breastfeeding mums with sound advice and inspirational daily snippits.

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Happy World Breastfeeding Week followers! I’ve been feeding this little one for almost 5 months now and was already pregnant with her when I stopped Feeding Bea at just over 2. When I first started thinking about breastfeeding my sole motivation was an 8hour flight we had planned when Bea was 4months and not wanting to faff around with formula on flights. On my two and a half year breastfeeding journey since, I’ve become a passionate breastfeeding advocate and I love seeing mums and nurslings succeed and have fulfilling Bf relationships. It’s not about what’s right or wrong or even best, but that I wish every woman could experience the joy I have from breastfeeding my girls. #WBW2017 #normalizebreastfeeding #breastfeedingweek #breastfeeding #joy #love

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Make a nest
Breastfeeding can appear to be the most natural thing in the world. Once you’ve got the whole thing down you can latch a baby on in your sleep (in fact they will do it themselves,) and feed one handed striding around the park whilst herding a toddler too, but that’s not how it works with a newborn. BOTH of you are learning then and you both need time to get a few things right. Guiding the baby to latch on, making sure its a great latch to prevent you getting too sore and help baby to stimulate the milk as much as possible, all takes some serious co-ordination and frankly a lot of getting your boob out. You need to be able to see it, Baby needs to be able to get at it without clothes rucked up around you… The majority of new mums don’t feel that confident wrestling with a screaming babe and a bare breast with great uncle Arthur visiting or in the local Costa Coffee, so this is a time for battening down the hatches a little, holding off the visitors and just resting. Make sure you have your partner on feeding duty – that’s feeding (and don’t forget hydrating!) YOU by the way. Get super comfortable, keep things warm so you can do lots of skin to skin to promote milk production, and soak it all in. Milk production is also strongly linked to your physical state. If you’re exhausted and physically drained from labour, your body needs the rest to get the milk going and the oxytocin rush you will get from uninterrupted bonding with your baby is super important too.

This isn’t advice just for the first week either. Sometimes things get more difficult when your milk has come in as baby gets a taste for the milk and has some catching up to do. If you have lots of visitors holding the baby, again aside from it being exhausting you can’t learn your baby’s ‘cue’s’ as well because you’re not as close, which is really important in the first few weeks. Getting to know your baby and when they want to sleep or feed makes your life so much easier! And when baby wants to latch on again for the 5th time in an hour you shouldn’t have to explain yourself or listen to comments from well meaning relatives which put you at risk of committing a violent crime in your sleep deprived state. 😉

Have support on standby
If you did NCT or a local birth preparation course hopefully you had a breastfeeding session and took away some information about feeding support when the baby arrives. Local midwives often have ‘infant feeding’ teams who come and visit to help you but anyone who has been trying to get to grips with breastfeeding a baby knows that when it isn’t going to plan you feel like you need hand holding several times a day, not a couple of times a week. There’s no substitute for good experienced advice when you actually have the baby in your arms either.
La Leche League, (UK site here – LLL UK) connects mothers to local support groups and practitioners and has great blog posts. Breastfeeding Consultants/Lactation Consultants Local breastfeeding nurse, breastfeeding café’s or 4th trimester meet ups all offer practical and emotional support throughout your breastfeeding journey, from newborn to weaning, so familiarise yourself with where to find them before you need them and USE THEM. The NHS BF page has lots of pointers to help too.

It takes a village
What frustrates me about breastfeeding is there is always someone ready to talk about how hard it is but there are few people willing or able to talk about their positive experience. There aren’t enough people talking about it, or doing it, to make it normal. We should be able to talk openly about our experiences, be that sore nipples, (I can recommend a cream for that!) choices around Co-sleeping, (I have World Health Organisation guidance on that which you can use to practise safe co-cleeping!) the challenges of feeding an older baby or toddler (Seriously, solidarity sister!) the sleep deprivation during a growth spurt, how to keep breastfeeding when you go back to work, how to get baby to take a bottle, how to go about weaning from the breast if you want to… the list goes on and on and on. There might not be a solution but what I’m trying to say is a problem shared is a problem halved. If you know people who have or are breastfeeding, lean on them. Use their knowledge and experience, – I’m willing to bet they will be desperate to help; be that the girl next door or your mother-in-law, if they’ve breastfed for any amount of time they will often really ‘get’ what your facing and they might even be able to help. Its take a village to raise a child and that phrase is never more true than when applied to Breastfeeding.

Writing this has made me think of some many more breastfeeding posts I’d like to share. I have never written about my breastfeeding ‘journey’ with Bea and Cora to date, or about how I kept going when I went back to work at 7 and 10 months respectively. Do let me know if you’d like to read those, and if you can add to my list above. And if you found this because you are breastfeeding and needed help or support, or you are planning to, You are Amazing, Keep Going!

Rebecca x

Thanking you kindly…

As a child I was always brought up to write thank you letters, and I mean to everyone. People we saw regularly, people we had already thanked at the time of receiving the gifts and people far away. As an adult, I try to keep writing them but admit, time gets the better of me and sometimes it’s frankly embarrassing after so much time has passed to send a thank you letter so late!


Image Via The Glitter Guide: 7 Sweet thank you cards
Now that we have Bea, its made me think a lot more about thank you’s and the act of writing a thank you letter. Personally, when I give someone a gift, I do it without the expectation of thanks. I don’t give to receive thanks in return, but simply because I want to. I might want to celebrate someones birthday or new baby, or just cheer them up and whilst a thank you is lovely to receive, I don’t count them or look out for them. In fact there are occasions when I would rather NOT receive a thank you letter… I’d would much prefer that new mum spend an extra 5 or 10 minutes cuddling her new baby than thanking me for the gift I sent.

Now we have Bea, a whole new world of thanking people has popped up, and I feel I ought to write thank you’s for all of her gifts too. But when she’s not actually writing them herself, I’m not actually teaching her to appreciate the thought, effort or financial generosity behind a gift (which I would plan to do in future with an older child,) and it is one more burden for an ever growing mummy to-do list. So I’ve decided that we will write thank you’s for geographically distant relatives and people we won’t see to thank. Those that we do see will be thanked in person on receipt of the gift and family/friends can have electronic thank you by way of photo or email messages showing the presents in use.

I’m curious to know readers, what did you do growing up and what do you do now, (or plan to do) with your children?

Love,
Rebecca



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