On Allergies, Tests and Occasional Whinging

Psyching himself up.

There were scenes of jubilation and celebration in the Russell household last night. We even cracked open a packet of almonds … and no, they weren’t #activatedalmonds. Our youngest has been given the all clear to consume almonds … the first whole nut that has ever passed his lips in his 10 years of life! It’s a big deal for us all. Our boy is anaphylactic for peanuts and ??? walnuts (they rate high but how severe we do not know) and other tree nuts, also with big unknown ticks against them.

Whilst pondering and scheming our overseas trip at Christmas time, it was really weighing on my mind how we were going to deal with our boy’s nut allergy in Europe. Lupin (legume) flour is used extensively in Europe … in standard baking and even in stuffing sausages. It’s rampant! Clinical studies have identified both serological and clinical cross-reactivity between peanut and lupin, although lupin allergy can also occur without allergy to legumes. So even though our boy had consumed other legumes in the past, there was a real chance that, because he rates high for anaphylaxis for peanuts, he could get into trouble consuming lupin containing products when in Europe. I decided to have him tested, under medical supervision in the Allergy clinic with his Doctor present, for lupin and also almonds …. as everything in those beautiful French bakeries has come into contact with almond meal … and I so wanted him to experience the delights of a French patisserie/bakery ….and be able to even just stick a baguette under his arm and nibble on it during the day!

We did all the skin prick tests again and surprise, surprise those damn peanuts just wont give up … it’s not diminishing yet. I am hoping that he is one of the 20% who get to grow out of his allergy … so is he! It’s not so that he can eat peanut paste or a bowl of nuts in a bar … but just so that he can eat a wider variety of foods … and I can even thicken sauces with my favourite cornflour again one day. Nuts are in everything!

Almond came up low again, so we decided to do a food challenge, starting with just wiping it on his cheek, then his lips, then just inside his mouth, then we got down to the actual oral consumption of the damn thing. Oh you have never seen such melodramatics and facial grimaces. It was like he was eating bitumen!  The gagging, the shoulder shudders, the flouncing on the couch. Eat the damn 5 almonds so we can get out of here, son. Overall, the whole thing took 3 hours … due to the waiting time in between each test … and the blood pressure tests, respiratory observations. 5 almonds later and no vomits (although we came close) and we were given the almond green light. Lupin didn’t even rate on the skin tests so we are good to go.

He’s really so good with it all, outside the dramatics of the clinic. A super nut detective. And he has perspective on it all too. I have constantly reminded him that he does not have to stick himself before every meal with insulin pens and blood sugar testing equipment, like ID Diabetics do, and I throw in the PKU card often, when he whinges about not being able to have a certain food.

PKU – phenylketonuria, an inborn error of metabolism, is where the body doesn’t make phenyalanine hydroxylase, the enzyme that converts the amino acid phenylalanine (naturally occurring in protein foods, even in high doses in fruit and veges)  to the amino acid tyrosine. Phenylalanine builds up in the blood and causes brain damage. I used to be the Dietitian in the PKU clinic at the kids hospital, before having my family. You want danger in a diet and restrictions?! …have PKU, son. A predicament in which a normal protein diet causes brain damage. The diet is so restrictive and dull and the protein powder that has to be consumed (a special formulation made without phenylalanine but with tyrosine) in the past was the foulest tasting concoction you’d ever experience in your life. I don’t know if it has improved in the years since I was in the clinic but I use it as psychological warefare when things get dramatic and irrational with my little one and his peanut infliction. Yeah! #motheroftheyear … I pull out the PKU card and talk about the teenagers I used to see who missed the boat wrt diet compliance when they were younger and who were severely mentally disabled and he instantly gains perspective about his diet restrictions. Works a treat every time.

So we’re free to frequent French bakeries with gay abandon … with severe caution for peanuts, walnuts and pecans. In general, we just have to be cautious and watchful and be armed with the Epipen. Little one is so grateful that we have more definitive answers on some things. He’s even going to take an almond to school today, for show and tell, and eat it in front of the class! After all the dramatics yesterday! I can just see the ‘so what?’ expressions on the faces of his peers. I guess it was the biggest hurdle he’s had to jump in his short life … going against everything he has learnt about preserving his life and putting a damn nut in his mouth and crunching on it.

I’m a bit proud of him.

Oh, and for all those not the slightest bit interested in nut allergy, I Napisan-ed the hell out of my Italian linen covered sofa and it came up a treat. Don’t be afraid of Napisan I say! I ‘soaked’ like there was no tomorrow and lived to tell the tale.

Happy Tuesday!

A-M xx

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24 Responses to On Allergies, Tests and Occasional Whinging

  1. Sarah B says:

    I remember having those allergy test when I was young due to my asthma. God I hated it. What good news and yes, hopefully the peanut allergy lessens as he grows. It must be so difficult as peanuts, as you say, are in everything!
    I have napisanned the hell out of my old ikea couch covers and it does work a treat. They really could do with it now :)
    x

  2. Deanne says:

    my niece also has a nut allergy, she was recently tested again too and is now allowed peanuts, but no other nut, and she has to eat a certain amount each week- only problem without having them in her diet for so many years she doesn’t really like them!

    • A-M says:

      Yes, we are now to have the almonds at least once a week as the scientific literature suggests. Oh the gagging! I am going to hide them in things! xx

  3. chris says:

    I know just where you are coming from , my youngest has peanut allergy and my husband has tree nut allergy.
    As far as the legumes my daughter suddenly became allergic to snap peas!!! so annoyed by that , she loves them and they are so healthy.
    I want to bring her on a all inclusive tropical vacation to say Mexico or like but I am so afraid of the hidden peanuts or trace amounts and cross contamination , most of the incidents we have had are due to cross contamination, nothing severe so far thank god but it is so frightening. I too hope for her to out grow the allergy but the odds are against it. Very thankful to have amazing food labelling and safe nut free schools here in Canada.
    Here’s to a safe vacation for you .

    • A-M says:

      Oh Canada does sound safe! We had the most horrific experience with our son’s so-called ‘nut free’ school camp at his old school. My boy did not eat for 3 days and he was offered no alternatives to the nut laden food on offer. And we were told he did not have to pack any special food. He came home starving and so weak he felt sick. He just did not eat. Camp levy at that school? $600!!!!! Grrr, I was angry.
      xx

  4. Kate B says:

    Dear Am, can completely understand the concerns regarding allergies and travelling. We too held similar concerns with our son who is extremely allergie to shellfish (Sydney Olympics Cathy Freeman race = son has anaphylatic reaction to a bagel that was contaminated with prawns and we are in the bowels of the stadium getting life saving treatment!)
    The teenage years were tricky. He so wanted to believe he didnt have an allergy and desperately wanted to be like his mates and have sushi or a chinse meal. Often he would test the theory after a few beverages. Mussels on pizzas were a failure as was green curry. He has travelled extensively and lived overseas sharing kitchens with people cooking paella’s and the like but he managed to avoid a reaction whilst Mum at home constantly worried about ‘what if’.
    Anyoo he is now is 24 and he has finally learning to live with his allergy and now at least takes an epi pen with him when he goes out and has trained his housemates not to seafood EVER.
    Good lucj.
    Kate B

    • A-M says:

      Oh yes, the teenage denial. Not looking forward to that. Sounds like he has come good. Oh the worry we have to go through! xx

  5. Virginia says:

    Great news A-M! Allergy testing is a lot of rigmarole, as you well know, but having a good outcome like that makes it all worth it. And the peace of mind is priceless! Vx ps I need to wash my sofa covers too – just the reminder I needed!

  6. Andrea Lauder says:

    Wow, what a coup for him and for your family. I will admit the Instagram photos yesterday had me nervous but he handled it like a champ. That opens up more adventure food-wise for you on your trip. Way to be proactive!

    XX,
    Andrea

    • A-M says:

      Hmmm, champ? You should have seen the melodramatics behind the scenes yesterday! Bought him a pastry with flaked almonds from the bakery today. He downed it in 5 seconds. xx

  7. Engineer Mum says:

    Oh how I smiled at the “flouncing on the couch” bit! What a champ! And yay for almonds (yes even #activatedalmonds). That means macarons! Hooray!

  8. Beck McRae says:

    My husband’s brother has severe mental disabilities due to undiagnosed PKU, so I absolutely relate to what you are saying. A shame kids have to live with restrictions, but definitely things could be a whole lot worse than to avoid nuts – although peanut butter is pretty darn good!! My daughter has suffered a chronic bladder disease since she was three. She is now fifteen, and it has had more of a social impact than is fair for a beautiful young girl. But like you, we count our blessings and are grateful for all the things it is not, aware it could be a whopping lot worse!!

    Your white Christmas is drawing closer – what a special count down! xx

    • A-M says:

      Oh Beck, so sad. The heel prick test didn’t start til the 60′s so he would have maybe just missed out? I feel for your darling daughter. You just want to take the pain away, don’t you. She sounds so strong and brave. xx

  9. Louise says:

    Two of my girls have CAH (dodgy adrenal gland) and are cortisone dependant. They have quarterly hospital visits for blood tests and occasionally one has a bit of moan which is fair enough. But I know that the hospital visits allow them to see the many, many children going through far worse than they have to deal with and they leave feeling pretty lucky. I’m glad your son has made a small, important step forward :) Oh and I am soooo going to soak my couch covers!!!

  10. JP says:

    Congrats re the almonds. Great news. Almond meal is terrific in baking so it won’t be hard to keep up the exposure for him. We too have an allergic boy – he’s such a responsible chap and rarely feels sorry for himself. Makes me a bit sad though that he’s never able to be carefree at parties, friends houses, when we travel etc. But as you say, it’s all quite minor compared to the challenges others face.

  11. Great news A-M , you can be that little bit less on guard. So glad my kids don’t have food allergies. My son’s fussiness is plenty enough to deal with!
    fiona xx

  12. I have been very blessed to have 3 kiddos with no allergies. Though one had eczema as a baby and some flare ups every now and then- it is nothing by comparison to a life threatening allergy. Your boy has been brave!
    I must tell you that a few years ago I fought a huge, HUGE battle with a school and parent body who banned peanuts. I said that it should be all nuts. they argued that they only had kids with life threatening peanut allergies, I argued the tree nut line too, wanting them banned as well. I didn’t win and only peanuts are banned, all other nuts can be taken to school. I don’t send my kids with ANY nuts. Some of those peanut allergy kids would also have tree nut allergies, plus, there would be many children who have never had any tree nuts, Lots of parents restrict them due to the choking dangers (not to mention they are just too expensive for some families to have in their food budget), so wouldn’t know until someone shares at school- a disaster waiting to happen. I was very sad about it! Still am!

  13. Siobhan says:

    Hooray for that Mega win! We are due to have a follow up check for peanut/egg/dairy. My little one is nearly four and is thankfully not anaphylactic to any of these. Eggs used to cause dreadful reactions and excema. It now looks like Dairy has resolved and I am up to giving quiche, so we aren’t doing too badly! We only ascertained that through screening, so I think it was an invaluable process. I have a huge respect for the daily struggle of families dealing with food allergies.

  14. Jenny says:

    When I took my son, then 11 and allergic to all nuts, (now can eat almonds and walnuts) to France, I had warning cards printed up in French. I can’t remember who I ordered them through, but read about it in the Australian Anaphylaxis magazine. They were great to have, as my french wasn’t always understood. A bit too late to order for you now, but you could always make some up yourself?

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