Being thankful

A couple of days ago, my 13 year old daughter found out that a girl she had been friends with since they were both 6 had been told she had 4 weeks to live after her cancer had returned.  Just over 24 hours later Beth had tragically passed away. 

In Japanese culture, Sakura (cherry blossom) represents the transience of all things.  Like life, it is beautiful but fragile and fleeting.  So Carpe Diem.  Seize the day.  Make the most of every second and be thankful for all the wonderful things that bless your life.  Appreciate your loved ones.  They may drive us round the bend sometimes, but they're the only thing that really matters.

A Trip to the Beach

 The weather forecast for Wednesday was good, so we decided to get up at the crack of dawn and drive 2 1/2 hours to the beach.  We chose Bracelet Bay near Swansea in Wales, mainly for the name, but also because we've been to the Gower Peninsula before and it's beautiful, as well as being within a reasonable distance for getting there and back in a day.


 This was our first day out at the beach since the childrens' diagnoses, so we had to put quite a lot more thought into food than in previous years.  Knowing we couldn't just pop into a fast food shop on the way home, we took much more food, and left earlier so we could be home in time for tea.  The beloved DS ciabatta were packed, along with lots of gluten-free snacks and cakes.

 It was a beautiful day, the sun was shining the entire time we were at the beach, and some of us managed to burn, even wearing factor 30!  It was a very rocky beach, with only a little sand once the tide was out, but that meant that it was fairly quiet even though it was only a couple of miles outside of the city.  Even the grumpier members of the family (mentioning no names...) had cheered up by the afternoon, and admitted that they enjoyed themselves.

 We arrived home to a letter from Ruth's consultant.  Her blood tests results were all good news - she is no longer anaemic, she is not iron, folate or B12 deficient.  There is no sign of diabetes or thyroid problems, and most importantly her coeliac anti-bodies have gone right down, and are now 'equivocal'.  A great end to a lovely day.

When being polite makes you ill....

This is Ruth.  Sometimes she can be a bit of a moody teenager - but then what 13 year old isn't?  But she is a kind, thoughtful and polite girl, who always tries to consider the feelings of others.

Last year when she was 12, she was diagnosed with Coeliac Disease.  This was hard for her, but we were already used to the diet as Alex had been diagnosed earlier in the year and had been gluten-free for 3 months at that point, so it wasn't as much of an upheaval as it could have been.

Ruth is very eloquent, and usually very self-confident.  She often explains to her friends about Coeliac Disease, and is able to take responsibility for eating safely when she is out with friends, or invited to a party.

But recently there have been a couple of incidents where her politeness and her eagerness not to offend have led to her getting glutened.

In the first incident, her Science teacher knew she was Coeliac, and when she was giving out chocolate after using it in a demonstration, she got Ruth to check the packet to make sure it was safe.  The chocolate was fine, but the teacher cut up chocolate containing pieces of biscuit with the knife which she then used to cut up the gluten-free chocolate.  After the teacher had gone to the effort of checking the chocolate was safe for Ruth to eat, Ruth didn't want to offend her by not eating it.  So even though she knew that there was a risk of her being glutened, she ate the chocolate.  Fortunately it was only a small amount, and she doesn't react very strongly, but it did lead to a blocked toilet.  But any glutening incident is serious.  We talked about how important it is for her to put her health first and that if someone is offended by her telling them she's sorry she can't eat something because it would make her ill, then they probably aren't worth worrying about.

However, 2 weeks later it is the end of term and her form have a party as their teacher is leaving to work abroad.  There are 2 other Coeliacs in Ruth's form, and one of them brought in a gluten-free cake she had made for the 3 of them to share.  There was only one knife for them to use, and it was used to cut the regular gluten-filled cake first, before the gluten-free cake.  Ruth knew it could make her ill, but after her friend had gone to the effort of making the cake, she didn't want to upset her by not eating it.  So she had a slice of the cake (apparently it was very nice).  I was very surprised when she told me what had happened, as I would have thought that the other Coeliacs (both who were diagnosed when they were quite little so have been used to living with it for years) would know it wasn't ok to use the same knife.  Maybe Ruth felt that since they had been diagnosed a long time before her, she could follow their lead, as they would know whether it was ok.  By the time she got home she was grumpy and her stomach was gurgling.  This morning we had a blocked toilet again, this time so badly we had to call out the emergency plumber.

But obviously more worryingly, this is the 2nd time she has been glutened in a month.  Both times she knew it would probably happen, but ate the food anyway as she was too worried about hurting someone's feelings.  Before she was diagnosed, she was fairly asymptomatic so I'm not sure if she's convinced herself that she isn't doing herself any real damage.  She is very intelligent (she is starting Maths and 3 Science GCSEs in September, a year early), so it's not that she doesn't understand the mechanics of Coeliac Disease, I think that maybe she is in denial?

I'm hoping that this time the message has gone in and she really will try to put her health first.

Have any of you had a similar experience?  How do you deal with these kind of situations?  Is it something you just learn to deal with over time?

Any advice or help would be greatly appreciated :)

The End of an Era

 Today is Alex's last day of Primary School - where have the last 7 years gone?!  On Wednesday a special surprise was organised for a group of the Year 6 children - a ride in a stretch Hummer!  It was a lot of fun, but as you can see from the photos, rather hot and sweaty.  And VERY loud!  Glad I wasn't stuck in there with them, my ear drums wouldn't have coped.

This morning was a special leavers' assembly, which the children organised with the help of the teachers.  There wasn't a dry eye in the school hall by the end of the assembly.  Alex started crying after the sketch he performed, and hadn't stopped by the time I had gone home.  He was smiling, laughing and singing through the tears though.

One of the classroom assistants is also a photographer, and has been working with the children since they were in Year 1.  She had kept all the photos on her hard drive so that once the children reached Year 6 she could make a montage to show on the screen at the front of the hall.  Well you can imagine how emotional we all got, seeing the photos of them growing up into such amazing children. 

Primary school has been an interesting experience for Alex.  The photos from Year 1 showed an Alex that had disappeared for several years.  We think (looking back at how he was affected), that he developed Coelaic Disease when he was about 6.  So the first photos on the screen were a happy, smiley boy, small and slim but with round, rosy cheeks.  Then he started to get thinner and thinner, and more and more unhappy.  He struggled with school work, concentration, anger/frustration and depression as well as stomach aches from the age of 6 until he was diagnosed with coelaic disease last summer.

A year on from his diagnosis, and almost a year of living totally gluten free, and again we see the happy, confident boy who finds school work so much easier.  His sense of humour, empathy and intelligence are shining through again.  It's wonderful to see the real Alex able to shine through at last, not held back by the horrible medical condition that caused him so much pain.

Thank you to the teachers, especially Miss Parker, for being able to see his potential, and helping him to have the confidence to know he can do anything he puts his mind to. 

Now we look forward to a new future - healthy and happy.

The Great Gluten Free Recipe Challenge!

The lovely Caleigh over at glutenfreekblog set us a challenge - to cook a gluten free recipe where the main ingredient is orange.  As well as being gluten free, the recipe could also not include any dairy products, almonds, hazelnuts or chestnuts.  So quite a challenge for an unadventurous cook like me.

I spent a few days thinking about what I could make with oranges, as they're not an ingredient I tend to use very often.  I do however love lemons (as does my husband) and use then often.  That got me thinking - one of my favourite gluten free recipes is Lemon Drizzle Cake, so I wondered whether I could adapt the recipe to make an Orange Drizzle Cake.

The recipe I use for Lemon Drizzle Cake is one I've adapted over the past few months, but was originally based on this one from Tana Ramsey http://www.bbcgoodfood.com/recipes/4942/lemon-drizzle-cake  

The Orange Drizzle Cake came out surprisingly well, and was finished up within a day or two.  Although if pressed, I'd have to admit to preferring the lemon version, this makes a nice change.  I wasn't particularly adventurous this time round, I'll have to try to be more so in future challenges.

Thanks to Caleigh for organising the challenge, and I look forward to seeing what the other gluten free bloggers have come up with.

Orange Drizzle Cake
Ingredients
For cake:
200g cooking margarine (normally I use Stork, but as one of the rules was that it had to be dairy free, I used Pure Sunflower margarine)
200g Caster Sugar
3 eggs
Zest of 2 large oranges
200g Gluten free self-raising flour
For drizzle:
Juice of 2 large oranges
85g granulated/caster sugar

Method:

1. Heat oven to 180°C,160°C fan, Gas Mark 4.  Line and grease a loaf tin.

 2. In a large mixing bowl, beat together the margarine and sugar until creamy.

 3. Add the eggs one at a time, mixing thoroughly.

4. Sift in flour, then add the lemon zest and mix well.
5. Spoon the mixture into the loaf tine, and level with the back of a wet spoon.

6. Bake for 45 mins, then test to see if cake is cooked by inserting a cocktail stick into the centre - if it comes out clean, the cake is done.  If not, leave it to bake for a few more minutes then try again.
7. Remove cake from oven once cooked, but leave in tin to cool.
8. As soon as cake is removed from oven, heat the sugar and orange juice for the drizzle over a low heat until the sugar has dissolved into the juice.

9. Prick the warm cake (still in tin) all over with a cocktail stick.

 10. Pour the drizzle evenly over the cake, and leave in tin until completely cooled.

According to the original recipe, the cake will keep in an airtight container for 3-4 days or freeze for up to a month, but in my experience it won't be waiting around that long, and will be gobbled up in a day or so!

Birthday Parties

This week Ruth and Alex were invited to their first birthday parties since they were diagnosed with Coeliac Disease.  Obviously this makes things a whole lot more complicated.  Being vegetarian meant that it was a bit more difficult as it was, but this is a whole different league.

Fortunately I'm good friends with the mother of Alex's friend who's party he was invited to, so she knows a fair bit about Alex's needs as I've spent quite a lot of time speaking about it over the past year!  She and her son decided to make sure all the food at the sleepover was ok for Alex so he wouldn't feel left out, or have to ask if each thing was ok for him.  How good it is to have considerate friends.

We decided between us that the easiest thing would be for me to make some gluten free cupcakes and we sorted out the other snacks and drinks between us.  I was unsure how the cakes would go down - 10 and 11 year old boys aren't known for their tact or diplomacy!  

I made 12 plain sponge gluten-free cupcakes, marbled yellow and red food colouring through them to fit in with the Nerf gun theme, and decorated them with yellow icing, Dr Oetker Polka Dots and Haribo sweets.  Alex came home telling me the boys all loved the cakes, and the four of them wolfed down 3 each - that's about the highest praise you can get!

Ruth is now 13, and very independent.  I asked her whether she wanted me to phone the parents of her friend who's birthday it was, and she said no, that she had spoken to her friend herself.  She'd told her friend what she could and couldn't eat, and about cross-contamination, and her friend had made her a pizza using a DS pizza base.  I was very proud of her for dealing with it herself.  This is a skill which she will need more and more as she gets older, so it's good that she is comfortable doing this.

So all in all, these parties have been been a pretty successful.  I'll feel a lot less worried when they get invited to parties in the future.

Progress

It's been a long hard battle to find out what was wrong with Alex, and get him well again.  He started to struggle at school around the same time his health started deteriorating, around 4 years ago.  Now his health has recovered, he has finally been able to start catching up at school.

His latest report was a joy to behold - he has made the same amount of progress in the past 6 months, that he would normally be expected to make in a year.  He is now slightly above average for reading and literacy, and catching up fast in Maths.  He has been taken off the SEN (Special Educational Needs) register, and is now only 'M' (Being monitored).  His confidence in himself and his abilities continues to grow, and his teacher is so happy to see him making the progress that she knew he was capable of. 

All this time, it was Coeliac Disease that was holding him back in every aspect of his life.  Now we know and he is settled into his gluten-free diet, everything is turning around for him.  A year ago he was so ill and unhappy, it was heartbreaking to see.  Now he is happy, full of energy and doing well at school.  We couldn't be happier.

Teenager!!!!

On Valentine's Day Ruth was 13 - a teenager!  She has grown up so much the past few years, it is a joy to see her flourishing.  She's coped so well with her diagnosis with Coeliac Disease, and change in diet, we're so proud of her. 

We arranged her presents into 13 parcels to make the day even more special.  It was an interesting mix of presents this year - some very grown up ones (Skull Candy headphones, Death Note books and Blu-rays), but she still likes toys, so she also had My Little Ponies and a Monster High Doll - Cupid of course since she's a Valnetine's baby.

We had lunch in our favourite Itatlian restaurant, Puccinni's who do amazing Gluten-free pizza.  This was the first year that any of us could remember, that Alex wasn't ill on Ruth's birthday, which meant that all of us could relax and enjoy it so much more.

For her birthday cake, she chose gluten-free Red Velvet Cupcakes - 13 of them and heart shaped of course!  

Apparently it was the best birthday ever :)

My Little Sister's Wedding!

Austin (Best Man), Tom, Rosie and me (Maid of Honour).

It was soooo cold!

Ruth and Alex both looking gorgeous.

Me looking very happy :)

Alex and Great-Granddad

Rosie looking stunning in the sun

Tom, Rosie and me

On Saturday 11th February, my little sister Rosie and her finace Tom got married.  It was freezing but the sun was shining and the sky was blue.  Everything went perfectly, the bride was stunningly beautiful, the groom handsome.  A wonderful day :)

I'm still here!

I hope everyone had a lovely Christmas and New Year.  Apologies for the huge gap since my last blog post. 

I think I wrote last time about having been diagnosed with a UTI and feeling very poorly.  Well after 2 courses of anti-biotics I still had awful abdominal pains so I went back to see the Dr again.  He sent an armful of blood to test me for everything under the sun, but they all came back normal.  So he sent me for a CT scan.  That came back normal too.  So 8 weeks of horrible pain, and we still couldn't find the cause. 

Christmas and New Year came and went.  We spent them quietly, at home, which made it easier for me, as even dinner at my mother-in-law's house for a couple of hours wiped me out.  So I've been given anti-spasmodics (the wonderful Buscopan that so many of my friends swear by) to try for a week.  Keeping everything crossed they work, as the next step is a colonoscopy, and I'd really rather avoid that if possible!

As well as neglecting the blog, I've also been neglecting the camera, and only doing the bare minimum cooking-wise, but I'm feeling a bit brighter this week, so hoping to get back into the swing of things.  I'm not one for New Year's resolutions, but I do have a good feeling about this year :)

A Year in Review

 This year has been tough in so many ways.  Getting through it has been somewhat of a triumph.  I'm hoping and praying for an easier year ahead.  I took this photo yesterday to symbolise the hope I have.  Something about a rose bud opening its petals in an almost freezing garden in December spoke to me.

Yesterday it was a year since my Grandma died.  She had been very ill for a long time, and although it was a relief that she was no longer suffering, it was heartbreaking for all of us.  For Ruth and Alex, it was the first time they had lost someone close to them.

This photo of my Grandma and I was taken by my dear friend and wedding photographer Kirsty Wiseman at my wedding in May 2008.  It is one of the most precious to me of all the amazing photos she took that day. 

Then in February this year Alex got sick.  In agonising pain for months, he was convinced he was dying - had me worried I can tell you!  In May I was told I had degenerative arthritis in my wrist which would continue to get worse and was already causing a lot of pain and difficulty in doing things.  However this was eclipsed the following week when we were told that Alex's blood test had been positive for Coeliac Disease. Ruth was screened as a result, and in July we were told her blood test was positive too. A biopsy and endoscopy in August followed for Alex who was immediately told to start a gluten free diet as the damage to his small intestine was so extensive.  In October Ruth had her biopsy and endoscopy and was instructed to start a gluten free diet once the results came back.  Fortunately it was caught much earlier in Ruth, and the damage wasn't anywhere near as bad as with Alex, and she had few symptoms.

It has taken a long time to come to terms with everything, and to get used to the new diet.  But finally I think we're getting there.  I'm feeling positive for the first time in a long time.  Seeing the children doing so well is inspiring.

Just need to get to the bottom of these abdominal pains I'm having, but hoping CT scan on 21st will shed some light on the situation.  Hoping for positive news there too :)

Victorian Christmas Market

Yesterday I had a day out with my lovely friend Laura at the Worcester Victorian Christmas Market.  There were lots of lovely things to see and photograph.  Of course my favourites were the owls (no surprise there!) and carousel.  It was great to catch up with one of my best friends, and have a bit of time away from the sofa where I've spent most of the past 3 weeks.  

When my body lets me, photography is my main hobby.  If you'd like to see more of my photos, please have a look at my Flickr photostream http://www.flickr.com/photos/sakurablythe/  A lot of my photos involve dolls just to warn you though!

Check Ups

Today Ruth and Alex had their check ups with their paediatric consultant at the local hospital. Apart from the consultant running 50 minutes late it went rather well. Alex is growing and gaining weight inline with the percentile he's been on the past few months. Its possible that he may start a steeper increase as his body recovers, but the consultant is happy that he is going in the right direction now, after losing weight in the months leading to diagnosis. Everything is going so well with Alex that he doesn't need to go back for a year. He had to have a blood test, but its just to see if his iron levels are back to where they should be so he can stop his iron supplements. Ruth's weight has stayed the same, and she's grown 1/2 cm since October so he's happy with her progress too. Ruth will see him again in 4 months to see how she's doing, and to check her iron levels and blood count, and then 8 months from then so their appointments can be co-ordinated. So all in all a pretty positive consultation. Its good to know they're both recovering so well.

Quinoa Supergreen Salad

   In my quest to find new gluten free things to feed the family, I came across several discussions of quinoa (keen-wa).  I didn't even know how to pronounce it at first, never mind what to do with it!  I Googled recipes, and came across this one on the BBC Good Food site Quinoa Supergreen Salad.  A bit of tinkering, and I made it suit us.  The children tried it, but weren't keen on the avacado.  Ruth loved the soya beans though, and eats them as a side dish to other meals now.  John and I really enjoyed it though, and this dish full (above), was my dinner that day - and I managed almost the whole lot, which is pretty good for me at the moment.

Ingredients
50g Quinoa
4 spring onions, finely chopped
1 small avocade, diced
1 lemon, juiced
100g frozen soya beans (edamame)
100g frozen peas
1/2 small bunch parsley, chopped
1/4 cucumber, diced
Olive oil
Salt to season

Method
1. Cook the quinoa following the pack instructions, drain, rinse under cold water then drain completely.
2. Add the spring onions, avacado and lemon juice to a bowl and season with salt.
3. Blanch the soya beans and peas for 2 mins, drain and rinse, then add to the bowl.
4. Add the quinoa, cucumber and parsley to the bowl, pour over a few tablespoons of olive oil, and toss everything together.

Can be served as a side salad, or even a light meal.  Tasty, and packed with nutrients in all those wonderful superfoods.

Choc Chip Cupcakes

   When Alex was first diagnosed with Coeliac Disease, it took a few weeks to find proper food that he'd eat.  One of the first things he enjoyed eating were these choc chip cupcakes - in fact he didn't even realise they were gluten free the first few times he ate them.  They have been a bit of a God send to be honest - they are good for lunch boxes, supper, and any other time he feels he feels a bit peckish.  The best things is they are quick, cheap and easy to make, and because I know everything that has gone into them, I know they're safe and reasonably healthy.  The only problem with them is how fast they disappear!

Ingredients
3oz caster sugar
3oz margarine/butter
3oz self-raising flour (I use Dove Gluten and Wheat Free Self-Raising Flour)
1 large egg

2oz milk chocolate chips (check to make sure they're gluten free)

Method 
Preheat oven to 180 degrees C (170 degrees C fan oven).  Put 12 cupcake cases into a cupcake tray.
1. Cream together the sugar and margarine.
2. Break in the egg and mix with a fork until fully incorporated.
3. Sift in flour and fold into the mixture.
4. Stir in the chocolate chips.
5. Spoon mixture equally between the cupcake cases, and bake in the centre of the oven for approximately 15 mins, until tops spring back when lightly depressed, and cocktail sticks inserted into middles come out clean.  Allow to cool for a few minutes before eating.

   The cakes keep for a few days in an airtight container, but in our experience they don't last long, as they're gobbled up!

Ruth's diagnosis & a Glutafin hamper arrives

On 31st October Ruth had her endoscopy and biopsy at Birmingham Children's hospital, and yesterday we got the report, confirming that she does have Coeliac Disease as suspected.  So this morning she commenced her totally gluten free diet which she will remain on for life.  It was interesting to see Alex and Ruth's biopsy reports.  We were expecting them to differ as Ruth's symptoms were so much less severe than Alex's.  The main difference was that Alex had villous atrophy and duodenal ulcers, whereas Ruth had partial to sub-total villous blunting.  Hopefully because it was caught so much sooner in Ruth, she will recover really quickly.

She is in the process of setting up her own blog, which I'll link from here.  As an almost-teenager, her experiences and feeling will be very different to a lot of people's.  She is at that age where she likes to go out shopping or to the cinema with her friends.  This means she has a lot more responsibility for her own diet.  As Alex is still quite young, the responsibility is all with me.  Fortunately she really enjoys cooking, so we'll have fun discovering recipes she loves together.

In other news, a lovely hamper of samples arrived from Glutafin last week.  Full sizes of their White Fresh Loaf, Fibre Loaf, Digestive Biscuits, Crackers, White Mix, Fibre Mix and Fibre Rolls.

So far he has eaten all the White Fresh Bread - it was really yummy apparently.  It looked and smelt like 'real' bread, although he says that he can't remember what that tasted like now after 3 months of the gluten free diet.  The digestives were used to make a gluten free chocolate biscuit cake which went down well with the whole family.

I'll be updating the other pages of the blog with links and more info soon but haven't been well with a UTI and kidney pain so am having to take it a bit easy at the moment.

Looking back....

Part of the recovery, not just for Alex, but for us as a family involved looking back at his life to see if there were any clues to how ill he would become, and to see if we could identify when it all started.

When he was in the last year of infants (I think that would have been around 6 years old), all of a sudden his behaviour became very erratic.  He would be hyperactive, almost bouncing off the ceilings, then angry and violent (often towards me as a 'safe' person'), then suicidally depressed.  This went on for months to the point where I'd done everything I could but nothing seemed to help, and I couldn't cope.  I finally admitted defeat (it felt), and went to seek help from the GP.  Of course, describing the individual incidents didn't make much of an impression, and whenever Alex had been to the Drs he had always been pretty well behaved, but did agree to refer us to a child psychologist even though he didn't think it was necessary.  I saw the psychologist a few times, both alone and with Alex.  She helped me analyse everything, and find ways of dealing with his behaviour and working out what the triggers were.  It became apparent that a lot of his mood swings were caused by blood sugar fluctuations, so I spoke to the school and made sure that he took a cereal bar to eat at ,id-morning break, and always took something for him to eat as soon as school finished.  The hyperactivity and violence quickly became control able.  But the depression was a frequent visitor. 

Depression is a hard subject for most adults to discuss and deal with, but when it involves young children, it is almost impossible.  How do you tell someone that your child regularly tells you they want to die, or wish they were dead?  And not just while they're arguing with you, when they're in bed crying at night because they are so deeply unhappy although they don't know why.  Who do you turn to?  In my case, I struggled through, trying to deal with it as best I could, all the while blaming myself.  Did he inherit it from me?  Was I causing it somehow?  Why couldn't I make my child happy?  It's a terrible burden to carry.

When he started in the juniors he started to complain of stomach pains, mostly in the mornings when he got to school.  The teachers and I thought it was because he didn't want to be at school, and the unhappiness was making him have the pains.  I repeatedly approached the teachers for support.  I could see he was struggling with the work, but it hadn't been picked up on.  I asked for him to be tested for dyslexia which runs in the family.  Just as we started to get somewhere we would get fobbed of.  It seemed that because he was quiet, well behaved and not totally failing at school, he was falling through the net.  In year 4 the teacher suggested he have his eyes tested to rule out sight problems.  It turned out that he did need glasses and they seemed to help a little with his confidence.  The teacher he had that year was great.  She could see the potential in him and that he just needed help to raise his confidence in himself.  He started to make progress again, and things seemed to be going well.  He still complained of the stomach pains some mornings, but he seemed happier.

Then came the following school year when he seemed to be constantly ill.  Tonsillitis at the beginning of the school year, a nasty bout of flu before Christmas, tonsillitis again in February followed by the abdominal pains which were so awful he felt like he was dying, and lay on the sofa groaning for a month before finally several months later being diagnosed with coeliac disease and recovering so well it was like a butterfly had finally been able to stretch its wings which had been crushed in a chrysalis of pain.  Yes, strange imagery I know, but its very late and I'm rather tired!

Looking at all of this, it seem to me that the coeilac disease was probably triggered during that last year of infant school when his behaviour deteriorated so badly.  Everything makes sense given the context we now have.  He still has times of depression, but they are nowhere near as severe.  He does have stomach pains, but they don't last long and are not as bad.  The sever constipation he had had for as long as we could remember has pretty much disappeared!  Now the only reason he's taking up the bathroom for an hour at a time is because he's reading a book and lost track of time.

What a difference these few months has made.

Now we wait to see the differences in Ruth.  Her symptoms were thought to have been caused by puberty (stomach pains, irritability, tiredness) until we got her blood test results.  Of course, there's no guarantee that we will see a difference, but I'd like to think she will find school easier again.  After a lifetime of swanning through school at the top of the class, this past 6 months she has found it much harder to concentrate.

Ummmm, 2 months later....

I'm being so bad keeping this updated! Sorry, I'll try to do better :)

Firstly I want to say a huge THANK YOU to all my lovely Twitter friends who I've got to know over the past few months. Cannot express how much your support and friendship has meant to me.

Right, so what's happened in the past 2 months? Well, quite a lot really. Alex is doing really well. Everyone who sees him now who knew him before comments on how he's like a different person. So full of life, funny and he eats! He had always been an exceptionally fussy eater, and we never knew that it was because food hurt him. Now he is trying new things, and discovering he likes things. Rather a novelty for me still.

Ruth finally had her biopsy on 31st October. After leaving home around 9.30am we reached Birmingham Children's Hospital at 11.30am. We had to sit on flip-up chairs in the waiting area of the Medical Day Care ward until her bed was finally ready at around 2.30. She was very lucky though, as she got a side room to herself. After checks by multiple Drs and nurses, talks with the anaesthetist and surgeon she was given the go-ahead for the procedure. Then more waiting around until the porter came to take her to theatre at 4.20. A lightening quick change into a hospital gown and it was down to theatre. She was very brave and agreed to have a cannula in her hand even though she is scared of needles. She was so brave, even though she was afraid she wouldn't wake up from the anaesthetic, and was a little teary. At 4.30 John and I went back to her room to wait to hear how it had gone. At just after 5 the surgeon came to tell us all had gone well, and that although from what they'd seen it looked like it was coeliac disease, that we should wait until the biopsy report came to know for sure. 10 minutes later we were able to meet her in the recovery room, but poor Ruth wasn't feeling at all well. Having been nil by mouth for many hours by then, coupled with the anaesthetic had left her with a terrible headache and she was so distressed it was heartbreaking. The medical staff were clearly worried that she was so upset - the team leader was stroking her forehead, just like I do. Little things like that make a difference, and show how much they care. The ward closed at 6pm, so once Ruth was back there (5.15) they were hurrying her to eat, drink and get dressed so she could go home. Otherwise she'd have to be admitted to another ward and stay overnight. Of course all she wanted to do was sleep, so she was even more distressed. Eventually she managed to drink some water, eat some apple slices and let me dress her. She stood on legs as wobbly as Bambi's and held our arms as we left the ward, only to get stuck in rush hour traffic in the centre of Birmingham at 6pm! We got home at 7.45 and she was starving, ate solidly for half an hour before falling asleep. Fortunately the school had booked her the next day off school as well, so she had a chance to recover a bit.

So now its another waiting game for the biopsy report to arrive. Hopefully it won't be too long.

I'm having an intersting time at the moment with my own symptoms but I'll save that for another post I think :)

Making a wish

Making a wish, a photo by SakuraBlythe on Flickr.

And how could I not mention Alex's 10th birthday. And our very first gluten free one. We did have a few sad moments when he missed the party food he used to love, but I made him his favourite chocolate cake which he enjoyed.

The following week we found a lovely little restuarant in Worcester that serves gluten free pasta and pizza, called Puccinis They were amazing! Alex ate about 2/3 of an adult sized pizza which is the most we've ever seen him eat, and said it was the nicest pizza he's ever had. The lovely staff even offered to wrap up the rest, so he could finish it later, which he was very happy about.

A new month a new start?

Alex and Iggy, a photo by SakuraBlythe on Flickr.

So here we are at the beginning of September, a new school year starting next week. We're still in limbo as far as Ruth is concerned. The GP haven't heard from the consultant and he is on holiday so as far as we can tell she hasn't been referred to the Children's Hospital for her biopsy yet, 5 weeks after her blood test came back positive for coeliac. As the consultant is unreachable at the moment (his secretary is also away) I'm a bit of a loss to know how to proceed, at least until she returns in the middle of next week.

Fortunately the gluten free diet is going..... ok, I'd say. Alex is finding a few more things he likes. At the moment DS (Dietary Specials) are a favourite brand. He loved the tear and share garlic bread, sometimes loves the pizza (but wasn't feeling well yesterday so didn't manage to eat much), the crispbreads and shortcrust pastry. He also likes Livwell Pita Breads (with houmous, carrot and cucumber sticks), and M&S Made Without Wheat White Bread (although our local M&S has problems keeping that in stock which is a pain). He likes Juvela Fusilli too. Biscuit favourites are Morrisons Free From Chocolate Wafers and Swirly Chocolate Biscuits (or something like that). His absolute favourite are Kent & Fraser Choc Chip Crunchy Cookies, which they have just started stocking in our local Waitrose. They're not cheap, but they are delicious. The rest of us tried the Lemon Shortbread and they were some of the nicest biscuits I've ever tried! I've tried making a few gluten free sweet things - crunchy cookies, gingerbread and chocolate victoria sponge which have all gone down very well. We had a lovely shiny new oven delivered this week so I'm looking forward to trying more things. Particularly bread :)

We finally got a copy of Alex's biopsy report. His consultant phoned to say the that the gastroenterologist at Birmingham Children's Hospital had contacted him to say that Alex was definitely coeliac and to proceed with the gluten free diet if we hadn't already, on the 16th August. A week later the report arrived and was interesting reading. Some excerpts: Duodeum bulb had aphthous ulcers. Gastric antrum mucosa showed mild lymphocytic gastritis. Duodenal biopsies showed features typical of coeliac disease with villous atrophy, crypt hyperplasia, intraepithelial lymphocytosis and an increase in lamina propria cellularity. From what I can work out, with my limited medical knowledge (but hours and hours of research into coeliac disease), he's probably had coelaic disease for several years, undiagnosed, so the damage is pretty extensive at the moment, but now he's on the gluten free diet, that will heal over several months so that he'll be like a whole different child this time next year. The photo shows him on the day before his 10th birthday when we went for a walk with friends are their dogs. Alex was in his element as he loves dogs. It was lovely to see him looking happier. Our friends hadn't seen him since just after he came out of hospital in February and said he was like a different person.