EAS 058: Marci Komssi Shares The Best Way To Get Your Teenager To Remember Their Adrenaline Pens

Today’s Guest:

Marci Komssi

WEBSITE: https://www.allerware.com/

TWITTER: @AllerWareLLC

Marci Komssi is an allergy mum who has twin boys, but only one has an allergy. Her son was diagnosed with severe allergies to dairy, soya, peanuts, tree nuts and environmental allergies 13 years ago. Marci talks me through her journey finding her way through being allergy safe at a time there wasn’t as much information as now. During this time Marci’s son has had number of severe allergic reactions which have happened out of the blue.

What You’ll Learn:

I ask Marci about her experiences of her son’s allergic reactions and having to administer his epipen (epinephrine pen). We talk about how these experiences, although difficult have been an incredibly important learning experience. Marci and her husband looked at and re-evaluated how they handled allergies and how the school should handle allergies.

When allergy kids turn into allergy teens can be a tough time. Not only do they have allergies, they also have hormones. How should your parenting change to accommodate this change? I ask Marci exactly this. Marci shares her tips and has the most amazing strategy! Check out the episode from 19:00. I promise you will be inspired!

Marci also talks me through how she happened to start Allerware and the temporary allergy alert tattoos and bracelets.

THANK YOU FOR LISTENING

To get more EAS content sent directly to your device as they become available, you can subscribe on iTunes or Stitcher Radio!

One of our little goals we would love to achieve for is to get into the iTunes “New & Noteworthy” Section, it means we get free front page advertising on iTunes, how great for allergy awareness! But we can’t do it without you. Please subscribe, rate and review on iTunes so that the people at Apple will take notice of our podcast

And lastly, if you have any questions, thoughts, or guests you want to see on the show, please contact me via the contact page.

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EAS 054: Kids With Allergies Finale – Mentoring an Allergy Mum

Today is the finale in our Allergy Kids Series.  Over the months of September and October each week I have been talking to kids with food allergies about what they really think about having allergies and how they live with them everyday. These allergy kids range from as young as 4 years old all the way up to the grownup allergy kids. The aim of this series is to give you an insight into the thoughts, likes, dislikes, worries and celebrations of allergy kids and how it changes over the years. 

In the finale of the series I have invited on Allergy Mum Lusi to ask me questions. The cycle has come full circle now and that is something to celebrate! From our parents as our protectors, our educators and our advocators, now we allergy kids can start helping the new generation of allergy parents.

I think this is such a wonderful circle because we can provide reassurance that allergy kids don’t have to suffer or miss out. Instead we can learn to use our allergies to become better, more creative, more skilled and more compassionate people!

A new project I am just dipping my toe into the water with is mentoring. I want to help newly diagnosed parents, allergy kids and allergy teens to be more confident. So, in this episode I invited Lusi to come on the podcast and have a recorded session where she can ask me any questions she likes. What does she want to know about living with allergies? What are her fears and worries for her daughter as she’s growing up and how can she as a Mum help.

Resources:

Check out my mentoring page here and book your free 15 minute consultation.

 

THANK YOU FOR LISTENING

To get more EAS content sent directly to your device as they become available, you can subscribe on iTunes or Stitcher Radio!

One of our little goals we would love to achieve for is to get into the iTunes “New & Noteworthy” Section, it means we get free front page advertising on iTunes, how great for allergy awareness! But we can’t do it without you. Please subscribe, rate and review on iTunes so that the people at Apple will take notice of our podcast

And lastly, if you have any questions, thoughts, or guests you want to see on the show, please contact me via the contact page.

Pre-Ordering Available until 14th Nov. 2017

For those of you who have been following my blog and podcast for a little while you’ll know I’ve written a Gluten Free, Nut Free, Dairy & Egg Free Chocolate Recipe Book. It is the ultimate guide to working with dairy free chocolate with an amazing array of cakes, cupcakes, cookies, biscuits, sweet morsels and other delights.

After a year of work Chocolate Treats: decadent delights free from the top 14 allergens is now available for pre-order!

If you want to get your hands on a copy in time for Christmas make sure you check it out today!

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Eczema Survival Guide: 9 Things That Make the WORLD of a Difference

Eczema Survival Guide: 9 Things That Make the WORLD of a Difference

The second instalment of the Eczema Survival Guide. In this article Ali White from allergymums.co.uk shares the 9 things she’s discovered over the years of dealing with urticaria that makes such a huge difference in her day to day life. 

1

Apply any steroid cream you have BEFORE moisturising.

2

Always moisturise after a bath and shower to lock the water in. If the moisturiser feels tacky just let in sink in.

3

Always moisturise before bed, night time is a good repair time.

4

Use the PALM of your hand to moisturise, in a downward movement. Don’t rub, or go up and down as that can irritate the hair follicles and make things worse. I’ve bolded this as it’s really important. You don’t want to further irritate your skin.

5

If your hands are bad then buy a pair of cotton gloves. Slather emolliate on your hands and wear the gloves overnight. This can make a big difference.

6

Make sure you have the right antihistamine. I went back to my GP who doubled the dose I was on. I had no idea I was on a low dose of antihistamine…taking the maximum dose has really helped my skin.

7

Cut your nails short. I scratch at night, in my sleep (argh). Do everything you can to limit the damage you’re doing to your skin.

8

Cool showers only, and limit baths to 15 minutes. Don’t soak forever, or use very hot water. It will dry out your skin.

9

Wear breathable clothing. Cotton is your friend, polyester…not so much.

Finally…your skin will always be vulnerable. This is a lifelong regime, not something you do until your eczema calms down. You need to commit to constant moisturising whether you feel you need it or not. Once your skin is dry then you are likely to suffer. Keeping it from getting dry in the first place is the best thing you can do.

Ali White

Ali White

Allergy sufferer, allergy mum and founder of allergy mums.co.uk

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The Eczema Survival Guide: How to Deal with Eczema Flares

The Eczema Survival Guide: How to Deal with Eczema Flares

It’s not quite winter anymore, but I wanted to post this great article anyway. After our podcast chat (Episode 4 & Episode 5) Ali White from allergymums.co.uk was very kind to write up her tops tips for dealing with severe eczema and some of the tips and tricks she uses to stay sane amidst the itch. Check it out! I know you’re going to find it useful! – Nina x

Tis the season to be itching…there ought to be a song for Eczema sufferers with those lyrics. It’s winter. So the air is dryer, the temperature colder and those of us with dry skin and eczema suffer more at this time of year.

I’ve been through all sorts with my skin. Eczema that cracks and bleeds, scalp beyond itchy, chronic urticaria due to a chemical allergy which meant my face was covered with a rash for years. Fortunately a dermatologist did patch testing which showed an allergy to Tocopheryl Acetate; which is in shampoo, deodorants, makeup, lipstick, sunscreen plus loads of other stuff. So the Urticaria is gone, but I’m still dealing with cracked, sore hands and legs that flare with such intense itching that they feel hot and impossible to ignore. The rest of the time they are just dry, red and itchy.

Skin conditions are something that remain tricky to treat. The current thinking is that Eczema is caused by a defect in the skin barrier, with the eczema being triggered by allergens such as dust, or foods, or animals. Scratching just releases more histamine, which makes the reaction worse. So you might feel initially better for scratching that itch, but it will be very temporary and you really are making a bad situation worse.

Tis the season to be itching…there ought to be a song for Eczema sufferers with those lyrics. It’s winter. So the air is dryer, the temperature colder and those of us with dry skin and eczema suffer more at this time of year.

I’ve been through all sorts with my skin. Eczema that cracks and bleeds, scalp beyond itchy, chronic urticaria due to a chemical allergy which meant my face was covered with a rash for years. Fortunately a dermatologist did patch testing which showed an allergy to Tocopheryl Acetate; which is in shampoo, deodorants, makeup, lipstick, sunscreen plus loads of other stuff. So the Urticaria is gone, but I’m still dealing with cracked, sore hands and legs that flare with such intense itching that they feel hot and impossible to ignore. The rest of the time they are just dry, red and itchy.

Skin conditions are something that remain tricky to treat. The current thinking is that Eczema is caused by a defect in the skin barrier, with the eczema being triggered by allergens such as dust, or foods, or animals. Scratching just releases more histamine, which makes the reaction worse. So you might feel initially better for scratching that itch, but it will be very temporary and you really are making a bad situation worse.

So…my eczema winter survival guide:

1

Drink loads of water. Really…not tea, coffee or sugary drinks. But water. If you’re well hydrated your skin has a better chance of being well hydrated.

2

Moisturise like crazy. I moisturise 3 times a day. Morning, night and midday. Moisturise morning and night regardless of whether you feel you need it. You need to keep your skin in good condition all the time. Yes…this is a drag but better than being itchy. Really…midday? Yes. Is it easy? No. I have moisturiser with me at all times and I lock myself in the toilet and moisture my arms and legs.

3

Choosing your moisturiser: The higher the oil content the better at locking in moisture a moisturiser is. Everyone is different and likes different textures of moisturisers so do experiment. You may need to change over time if you find a moisturiser is no longer working. Go back to your GP and try something different if what you’ve been prescribed doesn’t work.

4

Keep a diary to better understand triggers – animals, food, dust, shampoo etc. can all set off eczema.

5

Don’t use soap – it’s very drying. Use a soap alternative. Don’t spend a fortune in Boots – get it from your GP. Emollients like Epaderm may be greasy but they really do help.

Ali White

Ali White

Allergy sufferer, allergy mum and founder of allergy mums.co.uk

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Allergic Life and You: How Should You Start 2017?

Allergic Life and You: How Should You Start 2017?

As the Christmas Season is upon us and the 2017 will be on it’s way very shortly, we are taking time to think about what our new year’s resolution should be.

Our allergic lives can be overshadowed with fear, doubt and frustration. How many labels do we have to check every single bloomin’ day?! Repeating again and again about allergens, what is and is not ok. Watching everything that you haven’t prepared and making sure there is no cross contamination.

Anyone ever had to quickly shout “Wait! Don’t use that knife on that piece of food too, you could kill me or at least make me really ill…!”?

But life with allergies doesn’t have to focus on these negative parts.

Here at Eat Allergy Safe we believe life is made up of SO much more. That’s why we want and need to celebrate our #allergywins!

And you know what?

We did just that.

 

 

 

Back in early November we attended the Allergy & Free From Show in Liverpool. Our aim of the show was to celebrate YOU! To celebrate the things that go right with our allergies! Maybe it was an allergy free birthday cake, a special allergy free dinner prepared by friends or family. If you felt special, it was an #allergywin!

We had a WHOLE wall of our stand dedicated to your #allergywins. It was so inspiring to see and read all of your posts.

 

One of my favourite #allergywin posts was by a little girl who has coeliac disease, she wrote “My family took me to a restaurant to show me what I can eat.” How wonderful is that!

We even got a mention on twitter and on the Safer Eating Website. Karen Woodford who is also Coeliac wrote a post sharing her Free From Wins.

 

Yes living with allergies can be stressful. Yes living with allergies can take a lot of organising. Yes living with allergies you do say the same thing over and over again. But there are so many wonderful things that should be celebrated.

Many of the #allergywins put on our wall were quite small. But in our lives, the lives of allergy sufferers and free fromers, the small things are what mean the world to us.

And, the small things should be celebrated!

So how are you going to start 2017?

Start celebrating your #allergywins by sharing yours using the comment box below! 😀

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It’s Nuts!: What Doesn’t Kill You, Makes You Stronger

It’s Nuts!: What Doesn’t Kill You, Makes You Stronger

In your life certain events are more important than others. Going to secondary school, going to university, your first ‘proper’ job and buying a house for example. Your parents realise this and start preparing you from an early age, teaching you how to: feed yourself, do laundry, manage your money etc.

Whilst important, all of the above are not life threatening.

However, for an allergy sufferer, we have a potentially deadly addition to our lives.

I have personal experience of this. January 3, 2007 was the day my parents preparation was tested to it’s limits. It was completely unexpected and as horrendous as we had imagined. It changed my life forever .

From left to right: My brother, my Mum and me (Nina), I think Dad took this picture, while on a trip to Goa to visit the seaside.

From left to right: My brother, my Mum and me (Nina), I think Dad took this picture, while on a trip to Goa to visit the seaside.

——Let’s Start At The Beginning——

You see, I have anaphylaxis to tree and ground nuts. This means I have a potentially fatal allergy. This means I have to carry a medical kit with me at all times: adrenaline pens, inhalers and anti-histamines. My parents found out in the worst possible way too, I was too skinny as a baby as I was allergic to cow’s milk, so I was given a teeny weeny bit of peanut butter, within a few minutes I was covered in hives. There was no internet, no mobile phones. I was fine, but my parents were freaked out. Fast forward 3 years and I was diagnosed with a anaphylaxis to tree nuts and peanuts and have been carrying adrenaline pens ever since.

 

——Back To The Story——

Firstly, can I just say that traditional home-cooked Indian food is AMAZING and completely different to what you get in restaurants! The aromas! I wish I could capture them and attach it to this post for you! (I will be writing up some allergy free Indian recipes for you! Watch this space!)

Indian culture dictates that guests are extremely well looked after, it’s the same as in Spain: mi casa e su casa. It is all about hospitality but.… and it’s a big but… allergies are almost unheard of, especially among my grandparent’s generation.

It was coming to the end of a 4 week family trip in India. It had been a great  trip, bringing relatives from England together with their extended family (Indians LOVE extended family connections!). It was a huge sprawling affair with lots of people to meet, being continuously fed, sight seeing and a spot of shopping. Thank goodness I was 16…had I been younger there would have been a serious amount of cheek pulling!

 

At the sides of the roads there were always fresh coconuts on sale. Rather than a service station, we would take a break and have fresh coconut water and then eat the coconut flesh from the insides. (A man with a very large knife would slice open the coconut!)

At the sides of the roads there were always fresh coconuts on sale. Rather than a service station, we would take a break and have fresh coconut water and then eat the coconut flesh from the insides. (A man with a very large knife would slice open the coconut!)

 

The last social call we made was to my Grandparent’s friends of over 50 years! More than triple my then age! A big lunch had been planned to celebrate more tenuous family extensions. It seems only a slight excuse is needed for a celebration in India! (A cultural characteristic I wholeheartedly love to indulge in!)

In preparation for this last family lunch, my parents and grandmother had been communicating with the host about my needs. She had been made aware of my allergy and there could be absolutely no nuts in the food.

We thought after multiple communications that this was understood.

Ooty india eat allergy safe

This was the view from the road while on a trip to Ooty, a hill station in South India.

After all we had managed 4 weeks of eating at out at restaurants, travelling, and being fed by other family members. There were a couple close  calls at restaurants but we would double or triple check with the staff. Those dishes that actually did nuts would be sent down the other end of the table and kept away from me, but otherwise with no incident.

The snacks before dinner were a traditional Indian snack which contained nuts. There were crisps next to the nuts. This was obviously a no-go area for me, so my Mum asked that I could have my own un-opened bag which was happily provided.

I was 16 and understood my allergy as best I could. I was wary of cross-contamination and I watched and listened checking for myself. However I think during this time I left a lot of the allergy checking to my parents. I was in a new country and at a new person’s house. Looking back, I feel that if I had had a more active role in my allergy care, asking questions and being more vocal, maybe the following incident would have been avoided…

When A Little Bit Is Too Much…

When lunch was ready all the dishes were laid out on the table. I was to sit next to my Grandfather at one end of the table. As I walked to my seat, my Mum and I noticed there were cashew nuts on top of the rice.

Errr…hang on a minute, we said no nuts…

Mum pointed this out.

Ok, I wasn’t going to have the rice, no problem.

My mum asked, “are there any other nuts anywhere else in the food?”

“No, no, there is nothing” the host said.

Ok then. Food time.

At this point in my life, the last major reaction I had had was when I was 9 months old. So I didn’t really have any idea what to look out for apart from what I had been told could happen.

I was served a plate of food with a taste of each of the dishes (there were lots to try!) and I started to eat. The first mouthful was delicious, the second divine! It was all SO GOOD!

Hmm that’s strange, am I getting ill? I feel like there is something at the the back of my throat, I can’t clear it.

My third mouthful continued to entice my palette.

As I finished chewing my fifth mouthful of food my Grandfather said “Nina, don’t eat the salad it has nuts.”

Too late.

(The reason he could tell there were ground peanuts in the salad is because he doesn’t like it when it gets under his dentures.)

My Severe Allergic Reaction…

My lips began to swell.

My panic sent me into action stations: I needed to get this poison out of my body.

I sat on the cold tiled bathroom floor, face over the toilet, my finger as far down my throat as I could get it.  I just remember thinking “If I can get this out of my body I would be ok, right?!”

I could feel my stomach screaming at me: “What have you put inside me?! Get it out! Get it out!”

My Mum held my hair back as I desperately tried to purge myself. But I couldn’t. I couldn’t make myself throw up. I started to freak out.

My stomach continued to scream. It was the worst stomach pain I have ever experienced. (Worse than any period pain – which once I have almost fainted from, had to go home from school and be dosed up on extremely strong painkillers for.)

But I had to get it together. I had to make decisions: first, piriton; second, do I use my Epipen?

My Mum sat with me as I took two piriton tablets. Hopefully that would help slow things down.

From the information I knew at the time, my Epipen was to be used if my throat started to close up. My throat was not closing up, I could still breathe. But I was scared.

I don’t like needles, but more than that, by using an adrenaline pen it seemed to confirm the situation was at its worst. That the worst could happen. That’s terrifying.

Humans are strange: with #anaphylaxis, ironically you are scared to use an adrenaline pen because it confirms the fact that your life needs saving. Click To Tweet

Ironically, you are scared to use this life saving medicine because it confirms the fact that your life needs saving. Maybe that’s just for the first time, what do you think?

I was feeling very nauseous. I wanted to throw up but I couldn’t make myself throw up.

I ignored everyone but my Mum and Dad. Anyone who was not going to do what I needed was ignored, they were irrelevant. My life is more important than other people’s feelings.

Did I want to go to hospital? Yes.

As we drove to the hospital I had a plastic bag on my lap. The bumps on the road made me feel really sick. I felt the nausea rising and my strength waning.

When we got to the hospital, I had to be carried in. One arm over my Mum, the other over the lady who had poisoned me. From my Mum’s view, she might as well experience what she’d done…

From this point on, time didn’t have value. I don’t know if it was hours or minutes I was in the hospital.

I was taken straight through and laid down on a bed. The doctors and nurses began attending to me. I felt weak. My stomach was still screaming. I didn’t have the strength to sit up.

It was probably quite obvious, I was very sick. I needed medicine and fast.

The nurse was trying to get a canula into my right hand, I turned away (I really hate needles). My Mum stood by my bedside as the nurse poked and prodded. It hurt, I didn’t like it. She kept trying. Why was it taking so long?!

She couldn’t get the canula in, they had to try a different place.

Sharp pokes again and again. Rather than the top of my hand, this time on the inside of my wrist, she was trying to get into the vein that runs up from your thumb.

Pierce, pierce, pierce.

Finally the canula was in, the sharp pain could stop.

But then there came a new sensation. A ferocious burning, forcing its way up my arm. Then again, like a molten fire. And a third time.

It was the medicine. If ever the phrase “coursing through my veins” had meaning, it was now. This fiery medicine was coursing through my veins.

Minutes or hours passed, I don’t know.

Worried people stood by my bed. I didn’t acknowledge them. I had no energy to make them feel better, to reassure them that I would be ok. To be quiet honest, I couldn’t have cared less at this point.

Then suddenly, I sat up. I could feel something welling up inside me. I was about to burst. Where was the plastic bag that I had had in the car?!

My eyes searched for it, where was it?!

This force inside of me was getting stronger.

It was at the end of the bed.

I could feel it pushing itself up inside of me, stronger and stronger. My body was tensing getting ready, and I could barely contain it.

I grabbed the bag.

I was like a dragon. A fiery force propelling its way up from my stomach, through my throat and out. It was like a river flowing and it didn’t want to stop. It was outside of my control.

My stomach kept pushing, my body doubled over, my throat began to burn. And still this fiery river propelled out.

When it was over, I fell back. Exhausted. I just lay there, semi-conscious. The burning in my stomach lessoned.

I just lay there. I didn’t panic, I didn’t think of life, or death. I just didn’t have the energy.

Looking Back…

Looking back, the reaction was short. But the ramifications were not. From ingesting the peanuts to waking up the next morning, I threw up 4-5 times.

The reaction itself was not only stressful for my parents but it also happened the day before we were due to fly back to England. So as you can imagine, caring for their daughter as well as packing was not an easy task.

When we got back to England, I do remember I was famished. I happily tucked into the pizza we had ordered. The next day on the other hand, was a different story.

I didn’t feel well. I couldn’t eat. I felt exhausted. I tried to eat some bread and cheese but the cheese made me feel really sick. Milk and yoghurt made me feel sick. Meat made me feel sick.

For the next two weeks, all I could stomach was bread and fruit. I was also due to go back to school, but wasn’t strong enough or well enough until a week later.

By the middle of January I could just about eat milk, yoghurt and cheese. But I still couldn’t eat meat. It continued to make me feel sick. It took until the end of January for me to be eating properly again.

By January, even though I could eat properly, I was still scared of food. If anything had a warning on it I wouldn’t touch it. Even foods that seemed safe I would still be scared.

Every time I put food in my mouth, the first 5 minutes would be terrifying. I would just wait for a reaction to start, for the whole process to replay itself. Lips swelling, stomach screaming, exhaustion, and medicine coursing up my veins…

What Doesn’t Kill You Makes You Stronger

It’s funny, you hear this phrase quite a lot but very few times can it be literally and figuratively true.

Physically, it took me 2 years to recover (because I caught every virus that went round school, including contracting Mononucleosis which took me off school for over a month), but mentally it forced me to take a different approach.

Being scared of food lasts for a relatively short amount of time because you get hungry. But, you have a choice, let the fear rule you or you rule the fear.

With allergies you have a choice: let the fear rule you or you rule the fear. What will you choose? Click To Tweet

I decided that I wasn’t going to be ruled by fear. I had to start taking complete charge of my well being.

I had to take charge of my allergy and so began a new journey in my life.

This reaction, although really quite unpleasant made it clear that other peoples feelings are never as important as my life. It showed me I absolutely had to be able to look after myself by knowing how to cook, being able to make other people understand that I am serious when I say “no nuts,” but also that getting worked up over your allergy is no way to live. I realised that how I live is my responsibility and my choice.

I was not going to let my allergy rule me, I choose to make my world safe for me and my allergy.

What will you choose?

Article Update

Since writing this article I have had a lot of people get in touch with me and want to know more about how I learn about managing my allergy and also how they can teach the children. You all made me realise I should put all the information in one place, in video, audio and written format.

So, I have been doing just that and putting together a Parent’s Guide to Allergies. It will have information on travelling, telling other people, making food fun with allergies and more!

While I’m putting this together, I am now available for 1-to-1 mentoring sessions for allergy parents and sufferers. If you feel like it’s all a bit too much and you don’t feel confident managing your allergy, I’m here to support you and coach your through. Check out my mentoring page for more information, or email me to book.

 

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