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.

And the result is.....

After much hype and excitement we got to Starship at 8.30am and after all the paper work was done, Emma got her first taste of Eggy muffins in 8 years.  Very tentative at first, she took the whole 1/16th of a muffin she was allowed and pronounced it to be "Yummy!".

The next bite 1/8th of a muffin 20 minutes later and all looked good. Emma is now using her ipod to time when she is next due a bite of muffin.

20 minutes later 1/4 of a muffin and a scratchy throat.  The allergy specialists are called and it is decided to continue with the challenge as Emma says her throat is okay now.

Another 20 minutes pass, no further symptoms so it is decided to go with 1/4 of a muffin rather than the 1/2 in case there is more reactions.

Within a few minutes she is complaining of a sore tummy.  20 minutes later a 1/2 a muffin is placed in front of her but she cant eat it and is pretty much curling up with tummy pain.  

The challenge is stopped, antihistamine given and the specialist called back again.

The nurse said that sore tummies are the most common reaction to a baked egg challenge.  The specialist is keen to reassess her in about 6 months with the view to trying it again.

So for now we have to say she Reacted to the challenge and we cant give her baked egg again.

Apparently they are not allowed to use the word FAIL these days, cause it might upset some people.  

Really?!?!?! 

Anyway the positive we take away is that she did not have an anaphylactic reaction, so that is one thing we can cross off the list.

And even though we are sad we can still enjoy a lemonade ice block, do some arts and craft and get a day off school.

Barbs x.

Shocking News

I just cant believe this has happened

http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=10863345

A young girl has died from Anaphylaxis to a bee sting.  D.I.E.D.

She had a known allergy.

I dont know if they gave her an epipen or anapen.

I dont know how long it took for the ambulance to arrive.

I know she has a family who are in absolute shock, that something as small as a bee could kill their child.

It is a real eye opener to just what life threatening allergy actually means.  Life Threatening means you can DIE from an allergic reaction.

Life threatening means that there are no guarantees that medical intervention will save your life.

It is hard to believe that in this day and age, with all our knowledge, something like this can still happen.

Adrenaline, in the form of an anapen or epipen, buys you time until the ambulance comes.  I'm not sure how long before it starts to wear off, someone said it was 20 minutes.  So I guess if you only have one pen and the ambulance takes longer than that to come, you might get into the danger zone.

But once the ambulance comes and you go to hospital, you kind of feel safer.  They have everything you need to save you, dont they?  They have more adrenaline, they have oxygen, they have other drugs they inject into you via iv line.  How can the outcome be so very bad?

This is a real wake-up call for all us allergy parents and allergy sufferers out there.

Allergies can kill.

And no matter how prepared you are, the worst case scenario can happen.

We dont want to wrap our allergy kids in cotton wool.  But we dont want them to die.

I cant imagine what her family is going through.  It is so hard to believe.

I am certainly feeling a little tender around the edges right now.  Hoping and hoping that this never happens to my beautiful allergy kid.

Barbs x.

Cheese has no milk in it ?!?!?!

So last week, poor Emma was admitted to Starship with tummy pains.  She was poked, prodded, X-rayed and scanned.  She had samples of everything taken.  And everything came back inconclusive.  So we still have a wee girl who has severe stomach cramps each evening that can last for a couple of hours and there is nothing we can do to help her......

Anyhow, this is not a post about her exactly but about what happened when we were in Starship.

Emma has a multitude of food allergies, one of her most serious is her dairy allergy.  The first night we were there they couldn't feed her.  Luckily I had popped to the convenience store at Auckland hospital and bought some 2 minute noodles which she ate.

The next morning Emma was happy to receive her menu and chose her dinner for the night - Pasta with tomato & garlic sauce.  Her menu clearly stated all her allergies.  However instead of dairy it said milk.



Imagine our surprise when her pasta turned up covered in cheese.  The care assistant called the kitchen and was told the meal was fine, they had double checked.  I tasted it, just to make sure and sure enough it was cheese.  Another call to the kitchen and then the dietician by our dedicated care assistant and we were told another dinner was on it's way.

The dietician came to chat with us and apologised profusely.  It seems that the person in charge of the kitchen that night had decided that cheese was okay, coz it wasn't milk.

NOT MILK! 

Not Milk, never mind that it is made from milk.  I was flabbergasted that Starship, of all places, could get it so wrong.  The dietician said she would be off to do some education with the kitchen staff.

This had a happy outcome.  Emma didn't eat it and got another dish (which she didn't eat either coz she didn't trust it to be okay).  But what if I hadn't been there.  Even if she had questioned it and the answer from an adult staff member of a children's hospital had assured her it was safe, would she have eaten it?

We realise that not everyone understands about allergies and that the slightest trace can set off an allergic reaction.  But the kitchen at Starship?  They should really know a whole lot better.

So Starship, I hope by our next visit, you will have sorted out your kitchen staff and things like this wont happen again.

Barbs x.

COMPLACENCY

Emma has been an allergy kid for 9 years, although we have only known about them since she was 2.  She had her first registered  anaphylactic reaction to peanuts then.  For the last 7 years we have carried around her emergency kit .  Occasionally we go into it to administer anti-histimine and ventolin for mild reactions but never have we had to use her Epi-pen  We have dutifully bought new epi-pens as the old ones expired and often thought "Do we really need this?", "The cost is so exorbitant to just throw away in a year or so's time."  We were complacent.

Do you note I wrote were.  Last night our lovely Emma came home from Girls Brigade with a tub of baking.  All safe for her - we provided ingredients and her lovely leader checked everything else they used.  Everything.  Nothing was on her banned list.  She hungrily gobbled them up when she got home.  I am so grateful that she ate them at home.  We had visitors, she chatted for a few minutes and I sent her off to bed.

"Mum" she called, "I'm itchy, can I have a shower?"

"Sure" I said "I'll be up in a minute"

"MUM I am so itchy, and I cant breathe"  She was starting to get really agitated and something was obviously wrong.

I get her out of the shower, give her Ventolin and her preventer Seretide and smother her in Fatty cream. She scratches constantly and her breathing is laboured.  "I am so ITCHY!" She cries.

I bring her downstairs and give her anti-histimine.  Then the welts start forming on her forehead.  I rang for the ambulance. The operator takes forever to find our address - I have to say it 3 times.  "It is an EMERGENCY!" I yell.  Hubby tells me to calm down.  Eventually they find out what is wrong.  The tell me to administer the Epi-pen.

For 7 years we have carried it and never needed it, now I actually have to use it.

The ambulance arrives a few minutes later.  They take her vitals and it all looks okay.  The welts are coming down.  Yay, we got it in time.  They take her to hospital.

By the time we get there I notice her body is red from head to toe and she is still so itchy.  The ambulance driver tells us it is just starting to come up.  It really makes me think this might not be as routine as I think it is.  Luckily half an hour later and the itch has subsided and her skin is starting to look less red.

They keep us in for 4 hours incase she reacts again.  Luckily all is good and we go home by taxi at 1.30am.

We still dont know what she reacted to, a trace of nuts maybe, some dairy that was mixed in with her food by mistake, or is it a new allergy to something she has eaten regularly before?

Complacency is bad.  And in a food allergic kids life, it can be fatal.  If we hadn't had the Epi-Pen and had to wait for the ambulance driver to administer it would we have had the same good result?  Probably is the answer, but not definitely.  And is that something I ever want to find out? No?

This really can be a life saver

We don't have an Epi-Pen now.  She didn't go to school today.  We have to be extremely careful with what she comes into contact with until we get her a new one. But what if it is a new allergy to something she eats regularly?  It is quite an unsettling feeling.  One of us will head off to Quay Park Pharmacy tonight to get one.

I don't think we will ever feel complacent about things with Emma again.  It was a real wake up call.

You can never know what is around the corner with allergies.

You need to be prepared.  ALL.  THE.  TIME.

The best laid plans

Well what a week we have had.

The first two weeks of August are crazy in our house.  Emma and Dan have their birthdays a week apart (it could be worse, I know a couple of people who have kids born on the same day a couple of years apart).  This year we let them both have sleep-overs  (note to self, do not do this again!).  Add to this our cute but naughty new puppy and you have a house in total chaos.

So I thought to myself, I am gonna get sorted this week.  I told the kids things were gonna change, they had new jobs to do and we were gonna get the 3 week crazy mess tidied up all together.  Starting Monday a new system, a new routine. Everyone on board, right, lets go.

Sunday night, Emma wont go to sleep.  She is not happy at all.  I let her back on the couch and eventually she falls asleep and is carried off to bed.

Roll on about 12.30am.  I am woken by unhappy daughter, "I feel sick" and a few minutes later she is sick.  That continues on hourly through the night.

I am not to be detered from my new routine.  When the alarm goes off at 6.30 I get dressed and take the dog for a walk.  He doesnt want to go.  I drag him out the house and down the street.  We get to the park just down the road.  There is a really strange noise and the dog is still pulling to go home.  What is that noise?  Just before it hits I realise it is a monster hail storm.  I pick up dog and run under a tree and wait.  The hail continues.  I pick up dog and run home (dont want him to get hurt by hail).  My great start to the day - we walked about 250m.  I come home and continue on with my plan.

Emma is now lying on the couch constantly moaning and still throwing up.  I take pity on the other two and drive them to school since the weather is appalling and give them instructions to walk home together.  I then take Emma to the drs and insist she is seen straight away.  Her lovely Dr sees her immediately.  He does a few tests and decides she needs to go to Starship for further assessment.  I arrive there at 10.30am  with a miserable exhausted child.  We spend the day with Em being poked and prodded.  She stops throwing up but the stomach pain continues.  And she wont drink.   The only time she shows any joy or enthusiasm is when the cry of "It's snowing" came from around emergency and we all climb up on chairs to look out the window at the white stuff falling from the sky.


They decide to keep her in over night and put her on a drip and observe her.  The only food they can give her is toast and jam.  The only shop open is Subway and she cant eat there and anyway it wouldnt be particularly good to eat when you've been sick all day.  I guiltily buy a sub and scoff it while she munches on dry toast.

We stay overnight.  The good thing about Emma is she has MRSA which means we get our own room with our own bathroom and our own tv and I get a real bed!  The bad thing is she is not allowed out of the room.  In the morning they discharge us.  All her tests came back negative.  Seems like it was just a virus afterall.  Although as she is immunosuppressed a virus can be deadly for her.

So we return home.  The house is even more of a mess.  And I am exhausted.  I manage to do a few things.  Bear is at friends house after school and when I pick her up I stop and have a glass of wine.  I decide that the new routine can wait another day or two. 

Emma still didnt settle last night and was miserable through the night.  I have escaped and gone to work, leaving an unhappy child at home with her dad.

I'll start getting organised again tomorrow...

Winter Ills and Hospitals

When Emma came home from school yesterday she looked pretty tired and within about 15 minutes was asleep on the couch.  She had been at a ripper rugby tournament all day, so I thought she was just exhausted.  She hadnt eaten much all day either.  After a few hours of dozing on and off, she ate a little bit of dinner.  While I was putting the other two to bed and having a fun time, hubby was sitting with Emma.  Then he comes up and says "I'm really worried about Emma, she just drifted off mid sentence...". 

A quick temperature test showed she was up to 39.5 C and we cant get more than a vague groan out of her.  A quick call to healthline said get her to hospital.  A dose of pamol and the ambulance guys turn up, temp already coming down 38.6C.  A trip to North Shore Hospital, temp continues to come down, bloods and urine taken.  Bloods come back clear but urine shows a UTI.

Its about 12.30am now, the dr says she is happy to admit her for observation but we will have to be transported to Waitakere - I'm like, you cant be serious that's like over 1/2 an hour away.  After talking with Emma's Doctor, I decided to take her home and do the observations myself.  They gave her antibiotics on discharge and her temperature stayed down.

Because of her medical history and especially because she is on Methotrexate, the doctor contacted Starship and we now have an open letter so she can be taken straight to Starship by ambulance should she get sick again.  Methotrexate is an immunosuppressant drug so her body cant fight illness like others can.

There is no peadiatric facilities at North Shore hospital now, not even an over night observation room, or a pediatician yet the ambulance still has to take sick kids to North Shore hospital as it is the closest, then if they need admitting they have to go to Waitakere, not Starship which is about 15 minutes away, because North Shore is part of the Waitemata Health Board, not the central one.  How crazy is that.