The end

Hi readers

After a few years of floundering around on this blog I have made the decision to stop.

I have created a new blog which is more in line with where I want to be.

Come and see me over at "Life's Like That".

Barb

Christmas Advent Bunting - Part One

When I was a kid I used to love my Advent calendar.  That day by day countdown to Christmas day with a chocolate each day.  Simply the best thing a kid could wish for.

Not with allergies though.  There are many advent calendars on the market - some nut free, but they contain dairy, some dairy free, but may contain traces of nuts, so in reality none that we can get for Em.   So we have always created our own, sometimes sticker charts, we bought one a few years ago, where you just move the tag along each day.  We would have fun things to do some days, stories to read, movies to watch, things to bake, activities to do.

This morning Emma announced she wanted to do some art.  I have been trying to encourage her creativity but she wasnt sure exactly what she wanted to draw or paint.  I suggested she do something Christmas so we could put it up and enjoy it for a while.  She and Bear suggested they make the advent calendar this year.

After consulting Mr Google, they settled on Christmas bunting.    Em found an idea of putting pegs on the bottom with a treat or activity written on it.  I thought it sounded like a fantastic idea.  Today they busily created 24 individual pieces of bunting.

A selection of their favourites.

So now they are trying to come up with 24 Xmas things to attach to each of them.

We plan to have Christmas at home this year so I'm sure the Xmas bunting will be a great addition to the Christmas feel of our house.

Day Three - Almost Wheat Free

And so the journey begins

Today is day three of Em being Almost Wheat Free - I say almost as we are not avoiding traces at this stage and there was a hiccup on day 1.  I forgot she had food tech at school and I hadnt informed her teacher of this new restriction.  So she had one piece of filo pastry which she had made into a pie.  Oops.  Must email teacher.

So what has she eaten.

Day one
Afterschool snack - two medium baked potatoes with Olivani.
Dinner - Pork Fried Rice

Day two
Breakfast

Banana Berry Smoothie & Dry Cornflakes

School Lunch

Left over Pork Fried Rice, Nairns Choc Chip Oat cakes, Fresh Strawberries.

The verdict - the rice is too hard to eat and she preferred yesterdays snack lunch.

Afernoon tea - Dovedales Rice & Raisin bread toasted with Olivani, Corn thins with Marmite

Dinner - Minestrone soup made with Gluten Free pasta. Banana.

Day three
Breakfast - Rice & Raisin Toast & Chocolate nesquik Oat Milk

And today she is taking for lunch

Homemade Teriyaki Chicken Sushi (which Em made last night), Orgran animal biscuits and Dried apricots

And have we seen any change?
Her skin is certainly looking better, but that could also be due to the antibiotics she is on to combat the infection.

Is she happy with the change?
So far she hasnt found it to be to much of a challenge.  "Just as long as I can eat potatoes I'll be happy" - bless :-)

Hello again

It has been a long time since I wanted to share things here.

Things have been ticking over so nicely over the last few years with Emma that I had reached point where I didn't really have a lot to say.

But that has all changed.  I guess that is the thing with allergies.  You think you know what you are dealing with and wham! something new happens.

Em is 12 now and hitting the turbulent years of puberty.  Puberty is well known in the allergy world as a time when things can change, you can grow out of allergies - YAY.  Not so good it seems for Em is that you can also grow into them.....

Yup another allergy.  Whilst not yet clinically diagnosed (waiting for the appointment at Starship) our GP has agreed with our self diagnosis that something we have been giving her is causing the chronic flare in her eczema.  I was hoping it would be something easy, but unfortunately all the signs are pointing at it being wheat :-(.

So our new journey is slowly taking off.  Today I am starting her on a wheat free diet.

I've found lots of information on feeding littlies on a very restricted diet, but not much info on what to do with an almost teenager eliminating all Nuts, dairy, eggs, shellfish, sesame, kiwifruit, most soy products and now wheat.  What am I gonna feed the girl for school lunches?

So today I sent her off with what looks like a kindergarten snack, not an intermediate lunch, but she was happy.  Her belly full of porridge with blueberries and coconut cream and the promise of a baked potato for afternoon tea.

Blueberry porridge is one of her favourite starts to the day - this is half eaten before I remembered to take a photo.

Corn thins with olivani & marmite, Chicken strips, bluebird potato chips, peaches in mango jelly and fresh strawberries.

I dont think she will be impressed when she gets home starving, but every other option was turned down by her.  She will learn me thinks.

Tender Hooks

Life as the parent of an allergy kid is tough.

Whenever she is not with me I worry.  Not just normal parenting worry that I have with the other 2, but a real gut wrenching worry.

Last friday I got a missed call on my cell phone from her school.  I went into instant panic mode, replaying scenarios in my head and trying to figure out how to respond before I called them back.  There was a picture in my mind of her all puffy and wheezy and the office staff not knowing what to do.  Of course it was nothing really, just a confusion as she had had water polo training before school.  She was fine.

Saturday was one of the local school fairs and little sister was dancing on the stage.  Emma just wanted to hang out with her friends.  Lots of new friends this year.  She is at Intermediate.  Kids that dont know her history, one old friend with her who does.  She comes up to me and says she wants to pop down to town with her friends.  She has her bag with her and she knows her rules.  I let her go with them for one whole hour, not knowing whether she will keep herself safe or not.  The only rule was to stay with the old friend the whole time.  The old friends Dad collected her and took her home.  She was fine.  I felt like I couldn't breathe for the whole time she was doing her own thing.

Today I sent her and her younger sister off on a run - big sister looking after little sister and helping her train for the triathlon.  Little sister was streets ahead.  Where was the allergy kid?  Lying on the pavement having an allergic reaction?  And no-one noticing? There is this new theory about exercise induced anaphylaxis, could this be what she was having?  And hang on a minute it was only 1/2 an hour ago that she ate - O.M.G... Hang on, her emergency kit is in the car.  So should I run back to the car and drive around the block?  Should I get little sister with boundless energy to run around the block again to look for her?  What should I do?  And then she walks around the corner, holding her side - Stitch - too much afternoon tea....  All my panic for nothing, again.

I thought being the parent of an allergy kid was hard before.  When she was little I could control everything.  The teachers knew her well, as did the office staff and the principal.  I knew the parents of her friends.  That has all changed now.  Her teacher knows her, but not the office staff.  And that is despite me going in and introducing her to them at the start of the term.

She now wants to go to the park and to peoples houses who I dont know and it is tearing my heart in two.  I dont want to stop her being a kid and I certainly dont want to stop her making new friends but I want to keep her safe.

It is time to let her take some control over her life and learn to make choices - both right and wrong.  And I have to hope that all the work we have put in over the last 11 1/2 years will make her choose the correct options.

I have to trust her to keep herself safe.

The trouble is a really wrong choice could kill her.

So maybe for the rest of my life, I will be on tender hooks.

RE-ACTION

Yup last Tuesday saw yet another anaphylactic reaction for our allergy kid.

This one was more mild than her last one.  The ambo guy reckons it was mild because we got the anapen in quickly.

This one was diferent from the others.  Firstly it was different because it was almost 2 hours after dinner before the reaction really started.  And then it took awhile before I decided it was anaphylactic.  She started off really itchy, a bit of a wheeze and I was thinking she was reacting but not severely, and I didnt necessarily think it was food related - her eczema had been flaring after doing sport on the school field over the last two days.  I gave her antihistime and ventolin. 

Emma asked us to call the ambulance and said she needed the anapen.  I still wasnt sure.

Then suddenly it was all on.  Hives were coming out on her forehead and she started to fade.   I was on the phone to the ambulance.  Hubby gave the anapen.  I had a blank and couldn't do it.  Things went pretty hazy.  

But straight away the adrenaline kicked in and she was doing okay.

The ambulance came, did their checks, she walked to the ambulance.  In the ambulance they gave her more adrenaline via a nebuliser.   They took her to North Shore rather than Starship as she seemed okay.  Once there they took her off the nebuliser and administered Prendisone.  She was in the Resus room for about an hour hooked up to monitors, then as her swelling and hives went down, they moved us to a general ED room and a couple of hours later we were allowed to go home.

Soon after arriving in resus -
Red and splotchy around the mouth
Red over her arms

Feeling better in resus - taking selfies
Still Red

Taking selfies in the ED Room
Returning to her normal colour

All in all, scary, but not that bad.

However some things have been learned.

1. No matter how hard we try to keep her safe, there will always be reactions.  This wasnt her first and most certainly wont be her last :-(
2. We all need to know how to use the anapen.  It is possible that any one of us can blank and someone else needs to be able to step up.
3. Emma knew what was needed - we need to trust in her when it comes to the reactions.
4. Emma needs to know how to inject herself.  We might not be there next time.
5. Never give Ventolin before Adrenaline - If you think it is a food reaction give the anapen first, ask questions later.
6. If you think it is a food reacion,  The anapen is needed if there is itching and wheezing - even if there is no swelling around the lips or throat.  Getting in before the reaction gets worse means more chance of a good outcome.
7. If you are out and about lie the person who is having the reaction down and send others to get the  medicine.  
8. Trying new foods can result in reactions, even if there are few registered cases of anaphylaxis to said food.
9. Reactions come in all shapes and sizes - no two will necessarily be the same.
10. Always be prepared, Reactions can occur well after the food has been eaten.  Always have the anapen with the allery sufferer.

We now have an anapen trainer and we are all practicing injecting each other, and Emma has been practicing injecting herself.

Yes it is scary.  

Having a child whose life is so fragile is hard.  

Something so simple as eating a dinner prepared at home could have fatal consequences.  

We have to be prepared all the time.  She has to learn to recognise her symptoms.  

We have to let her take responsibility - Every ingredient, every time.

We still dont know exactly what caused the reaction.  Maybe we never will.

Allergies are always going to be part of her life.  And with that there will be more anaphylactic reactions.

Next time I just hope I dont have a blank, and together we can administer the precious life saving drugs.

Kids are resiliant - Emma went to Netball trials at 7am on Wednesday morning! (Even though we didnt get home from hospital until after 1am)  And she played fantastically.

Barb x.

Growing Up

Today my big boy started high school.

It is hard to believe that this is the same little boy I held for the first time 13 1/2 years ago.  This sweet baby who needed me to do everything.

hmm this is the youngest I could find, him holding his little sister, the others are all on film!!!!!

So much has changed.

He messaged his friends to walk to school together.  There was no way I was allowed to go up today.  I had to give him his space.  This is something he has to do by himself.  When Hubby and I joked about going up with him, his answer was "That would be SO embarrassing Mum!"

His main concern was whether his best friends will be in his class or not.  We live in a small community and about 90% of his intermediate school head off to the same high school.  He will know plenty of people.

I am finding today almost as hard as the first day of school.  I hope he has had a good day, I hope he found his friends at break time, I hope he doesnt get lost (its a much bigger campus than intermediate), I hope his form teacher is nice, I hope he has friends in his class, I hope he wants to go back tomorrow.

It is hard not being there with him.  Cutting those apron strings all the way through.  I told him he has to walk straight home because I need to know everything about it.  But I guess I'm going to have to get used to him heading off on his own more and more.  The teenage years, although kinda terrifying in some ways, are also so exciting.  There are so many new opportunities for him.  And at the end of the day, I will be here for him whenever he needs me (which better be pretty often :-) )

Good luck my big boy, I hope you had a great day.