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Image courtesy of imagerymajestic at FreeDigitalPhotos.net

Written by Monica Brogan O’Gorman

Love it or hate it – The Festive season is upon us and the countdown to Christmas Day is drawing in at a fast and furious pace!

Christmas has always been my favourite time of the year. The social meet-ups, shopping for loved ones, indulging in food for the sake of it and all the yummies and goodies that come with the tradition of Christmas! The tree, the Christmas rush and just in general that “Christmassy” feeling! I love it all and just let myself get carried away with it.

But I am sad to say that this year, I have developed a love/hate relationship with Christmas, for reasons no one else will understand but parents of children who suffer from severe allergies….

My two little boys aged 28 months and 11 months both suffer from a rare allergy condition called FPIES

FPIES Support

Supporting FPIES a rare allergy condition

(Food Protein Induced Enterocolitis Syndrome) which is a very severe allergic reaction occurring in the gut and can be life threatening if medical intervention is not sought on time. Here is a very short clip (with special thanks to the ladies in FPIES UK for letting me use it)  to give you more insight into what FPIES.

The boys have also been diagnosed with severe non-IgE food protein allergies (also commonly  known as chronic FPIES). You can read more about their condition and journey to diagnosis here.

These conditions are relatively new terms in the medical field and it’s only in recent years that they have been written about and more importantly diagnosed. Thankfully, some doctors have really started to sit up and take notice of these conditions. They have started prescribing medication to treat symptoms of these allergies. But these medical professionals are currently few and far between so therefore most doctors who are not up to date in this area, tend to dismiss symptoms and brush off parents concerns leaving them feeling very confused and alone and struggling to deal with a constantly symptomatic child in severe pain. For anyone living with non-IgE allergies or experiencing them first hand, they know that these conditions exist in all their might and all their glory and quite frankly – they make our lives hell. You can read more about the symptoms of a non-IgE allergy here.


 

My husband and I have been thrown in at the very deep end of the non-IgE allergy cohort with our two little men.

FPIES allergy

My two little super hero’s

At 28 months of age, our eldest boy (Caolán) has two safe foods; Soya and courgette and our 11-month-old baby (Oisín) is in the very, very early stages of weaning onto a soya solid based diet as he has very much mirrored his brother to date with reactions and symptoms. Because of this, their consultants and dieticians feel that we should follow Caolán’s lead with Oisín.

Food trials with the boys are slow and can take a number of weeks to determine whether or not a food is safe. The difficulty we face with non-IgE allergies is because there are no known tests available in the world to determine which food proteins will trigger a reaction, or how severe these reactions will be, we just don’t know what to expect with a trial. So it’s a matter of feeding the food and waiting… It can take a number of exposures to the same food before an acute FPIES reaction occurs. so you really find yourself on tender hooks all the time. And in between food trials, it is vital that no accidental exposures occur to anything else as this could seriously affect the outcome of the trial. Read more about an acute FPIES  reaction here.

cows milk FPIES

Caolan at 2.5 weeks old after suspected FPIES attack to cows milk

Our family currently live in a state of high alert and in a world where every food (apart from soya and courgette in Caolán’s case) could potentially trigger a life-threatening reaction for them. The only way of managing their condition is to completely avoid all food. Sounds a little over the top doesn’t it? But unfortunately, this is a reality for us and for so many other families out there who are also living with these conditions. It is our only way of ensuring there are no accidental exposures, resulting in any kind of reaction and not knowing if it will range from mild to severe. And in some cases – possibly even fatal.

It’s an absolute nightmare trying to avoid food particularly around Christmas as food appears to be EVERYWHERE!!

Food and eating are part and parcel of every day living for people. Its natural to eat and people do not give it so much as a second thought. But for me, I do give it a second thought – in fact, it’s all I think of most of the time as I have to be on guard to ensure that my boys do not come into contact with anything they should not.

I have managed to successfully acquire the ability to walk into a room and scan it from top to bottom within seconds for any traces of food that might be lurking in a corner somewhere or peeping out from under a chair. Quite often I can be seen lunging across a room as quick as I can to get rid of the offending matter before the boys have the opportunity to get close to it.

FPIES warriors

Super proud mummy of these two little warriors

Most times this action can result in me looking like a crazy, erratic person! But I’ve now stopped worrying about what I must look like and what other people think as my boys safety is number one priority at all times!!

It really is so difficult to try and explain your actions to people who don’t get it… But what could be so difficult to understand? It’s as black and white as this: my children have a serious allergy condition that can and will leave them very ill if exposed to trigger foods. Can this statement be any clearer?

If you just take a minute and think of all the public places you bring your child to: Parks, Indoor play areas (food is not allowed inside the actual play area but I have been in situations before where there has been fruit juices and snacks left on tables in the supervision area for parents. I nearly had heart failure trying to make sure Caolán didn’t come into contact with any of it).

Safest place when out and about is their pushchair!

Safest place when out and about is their pushchair!

Christmas markets are beautiful but much too stressful for me with food being sold at every second stall, Santas grotto with so many children around snacking whilst they eagerly await their turn to visit Santa – food really is just everywhere. The stress, worry and anxiety of it all takes the good out of going anywhere for me. I feel I am putting my children into very compromising situations where they are surrounded with so many things that could make them very ill and land them in the hospital.

No parent wants that for their child so avoidance is just best practice in our case.

 

I try to lead a pretty normal life considering our circumstances. I keep my distance from food halls and cafes when we are out and about and I try to ensure that they boys are not put into any danger at any time. It can be pretty difficult to gauge though because sometimes food and crumbs can be left in places that you would never think of… I’ve come across situations before where it’s been left in shopping trolleys by people who have used them before us, inside communal toy cars and playhouses inside large shopping centres…I’ve even experienced biscuits and fruit on floors and seats in the waiting rooms of hospitals at outpatient appointments for allergy clinics! It’s crazy! And although I understand that this kind of scenario is just so normal to people, it just limits the things we can do without having to worry and be on guard. With food allergies, it only takes a single crumb to be accidentally ingested to trigger a reaction.

non-IgE allergy to rice

Severe non-Ige allergic reaction to baby rice caused facial swelling and marks

Trace protein of a food can also play havoc. And worse again still – cross contamination is another thing that we have to be so vigilant about. People might think that we are over cautious or exaggerating how bad things are for us but as crazy as it sounds, it is all very true.

We, personally, have experienced horrendous fall outs from carelessness around food in the past and It took for it to happen a few times before we realised what was going on. But thankfully we are now so much more aware. The big issue we now face is getting others to realise the consequences of their actions where food is involved……


As I sit here writing, I am getting palpitations at the thoughts of having to be in any kind of a situation over the Christmas period that will put my two precious little men at risk.

avocado FPIES attack

Caolan’s 4th admission after suffering acute FPIES attack to avocado

And what makes it a million times harder is the fact that we are constantly coming up against challenges from people who fail to understand what we are dealing with on a daily basis. Don’t get me wrong – I do not blame them for not “getting it” as it is such an unknown condition. But I do get slightly frustrated at how blasé people can be about the seriousness

of things and that is despite the fact that Caolán was hospitalised four times in his first year and Oisīn spent the first four weeks of his life in the Special Care Baby Unit. We have an endless list of hospital appointments to attend.

FPIES Cows mil

Oisin at 1 week, tube fed in SCBU following acute FPIES attack to cows milk

Plus we have had to travel back and forth to London three times in the last year to link in with world leading specialists who are based in Great Ormond Street Hospital, to seek medical intervention and support (which is still ongoing). But still, we feel that people do not understand the severity of what we have been through and the road that lies ahead of us… We know things will not always be as they are and it won’t be forever with the boys.

Yet we still have no indication as to when things will start to improve or when these reactions will become fewer and much less severe. We feel we are constantly explaining our actions time and time again. Things are so hard as it is without other people making you feel that you are over the top and overreacting about everything. It really is so wearing and exhausting. Do people actually think we have had to make huge adjustments to our lives just for the fun of it? Do they think we aren’t feeding our children food because we couldn’t be bothered?? There is nobody more than me that yearns for the day where I will be able to watch my children experience the taste of ice cream or a lollypop or a sweet. It rips my heart into pieces to see other kids enjoy these treats in the boys presence, knowing that my boys can’t have anything.


FPIES Boys

Having fun!

FPIES Boys

My Little FPIES warriors

But that for us is life as it is and we have to keep focusing on the positive things – their wonderful little personalities, how they are developing at a very normal rate and smashing milestones despite the fact that they’ve had little or no exposure to food. It’s these things that keep us going. I also long for the day when we will see more understanding from people, in general, instead of being met with suspicious looks and expressions of horror when they find out what lengths we have to go to in order to ensure the safety of our boys.

After conferring with a number of other mothers in similar situations to my own, I have realised that this is actually fairly common.

And I do realise that you only really understand the extent of what it is like to deal with something so tough when you have experienced a sick child first hand. And I also at times “put the shoe on the other foot” to remind myself that had I not have been given this journey, I too would be oblivious of the struggles that parents are faced with when living with severe allergy conditions. But at the same time, people understand what an IgE reaction is or the consequences of how fatal anaphylactic shock can be so why not give the same credit to a non-IgE reaction which can cause much more pain and prolonged symptoms than most IgE reactions? Or why do they fail to understand that an acute FPIES reaction which is just as severe and can be just as fatal as an anaphylactic shock? You can read more about the difference between an IgE allergy and a non-IgE allergy here.

In both cases, management for these conditions is complete avoidance of trigger foods, no cross contamination etc but that’s ok when you know what foods to avoid. With an IgE allergy, there are tests to determine what foods can trigger a reaction – with non-IgE allergy, there are no tests to tell us this.


So as Christmas sets upon us, my wish for this year is to have health and happiness for my family.

Christmas Tree

Twinkling lights

I still get caught up in the festive cheer! My halls are decked with holly, my trees are twinkling with bright lights. My presents are chosen with much thought and consideration. The boys and I have been having great fun watching Santa and singing along to Christmas songs. They are so excited! This part of Christmas is just so magical for me and I still love it!

Feeling "Christmassy"

Feeling “Christmassy”

But I just can’t shake the feeling of dread and fear I have about social gatherings over the next couple of weeks where it involves food. My husband and I end up getting stressed beyond belief as he follows one child around and I look after the other to make sure they are not coming into contact with food. Where is the enjoyment in social occasions for any of us when this is what we have to do? We shadow the boys every move and they feel the stress and anxiety off us and wonder why they can’t run free like the other children.

We know that the only real safe haven we have at the minute is our own home where we know what is what and are certain things are food free. This is due to our avoidance of eating food around the children and waiting until they are in bed before preparing our evening meals. Our rigorous cleaning routine at night ensures we remove any traces of food from our worktops and floors. It’s intense, but at least, we have great comfort knowing that our boys are safe in their own home. The danger then presents itself outside of our home when we visit places that have no need to be as intense or as thorough as we are with cleaning our food prep areas and places that food has been eaten in….

This will be our third Christmas as a family facing the unknown. But it’s the first Christmas that I feel confident that we have a good handle on all of this.

Waiting for santa

Waiting patiently for Santa!

We have had a particularly tough year with one thing and another and there were days where the only thing that kept me going was knowing that I had to keep fighting for my boys and be their voice. And thankfully all that has paid off. The last few months has brought good changes for us all and we are in such a better place now. The boys (especially Caolán) are at a great baseline and we are actually very positive about what is yet to come. Out of all this for me has emerged a stronger, more positive and focused person. You can never take away the stress and anxiety that these conditions bring to parents and believe me, it’s horrible – but I feel I am definitely learning to manage it much better. We have a long way to go, but I now have complete acceptance of where we are at and a plan of how to progress forward. Another big step has been to stop worrying about what other people think/say in regards to the lengths we go to keep our children safe. It is their issue if they choose to think that way and we have far more important things to focus our energy on. Ideally, a bit of support and some understanding would not go astray but I don’t get too hung up on it these days.


allergy boys

My mum & my hubby with me and the boys

I’m so lucky and so grateful for the constant support I get from my mother. She is the most amazing woman I have ever encountered in my whole entire life and I would be so lost without her help. My husband is also unbelievably amazing and has got me and the boys through all of this. He has been wonderful and one of the most amazing dads I know (the other one being my own father!) the boys idolise their daddy because they know he has their backs no matter what. So when I have strong support like this around me, it makes things a little easier….


Happy New Year!

Image courtesy of imagerymajestic at FreeDigitalPhotos.net

So to all you allergy mums out there dreading Christmas – try and find the courage to be strong and don’t feel you

have to go with the flow to keep other people happy…. Here’s hoping 2016 brings much-needed positivity to all of us and our little allergy warriors.


 

Here are 10 top tips from gut allergy mummy’s to share with your friends and relatives for a stress free Christmas:

1. Please do not take offence if an offer is declined to attend a social event you are hosting. It’s nothing personal and of course, we would love to go – but the risk factors are too high. Maybe instead, offer to send some goodies or party leftovers so they can be enjoyed in peace and as a treat when the children are in bed.

2. Please refrain from saying how healthy our children look and how you would never think there is anything wrong with them. And whatever you do – don’t mention the word “thriving.” We know you mean well but this is like a red rag to a bull! Only 20% of children with food allergies fail to thrive and looks can be very deceiving.

3. If you happen to be in our company when our children are eating – please refrain from telling them to stop messing with their food, eat up, sit down etc. many of our children have developed feeding aversions due to the pain they associate with eating food. So for us to even see them sitting at a table with a bowl in front of them is huge steps for us and for them.

4. Please be aware that under no circumstances should you feed our children anything without asking our permission at any time. Please do not make comments like; “ah sure one bite won’t do them any harm.” It can and it will do them quite a lot of harm. In fact in some cases, it could be fatal.

5. Please do not be too offended that we find it difficult to visit your home. Again it’s nothing personal. We just prefer not to take the risks of going into unknown teritory. But we would love to have you come spend some time with us in our home where we know it is safe.

6. Please be mindful of what your children are eating or drinking if they are in the company of our children. All it takes is trace protein or a crumb to trigger a reaction.

7. It’s ok that you don’t fully understand what our children’s condition is. But please feel free to ask and we will gladly point you in the direction of websites such as www.refluxallergyireland.com and www.fpiesuk.org where you can get more info. We know your children are too young to understand what is going on, but a simple chat with them to explain that they need to be very careful with food and drink around our children because they can become very ill from food, should suffice.

8. Please don’t question our actions when it comes to our children or make us feel like we are exaggerating about what happens. We do not cut out any foods unnecessarily and we do not stop food trials unless we see ongoing symptoms. Everything we do is in the very best interests of our children. We are also under the strict instruction and guidance of highly skilled and qualified medical practitioners who give us advise. We know you might mean well but it’s best to keep your comments to yourself when you don’t fully understand what goes on.

9. Please be mindful that our children are on lots of medication for their condition and some of it can make them very drowsy. They need regular naps throughout the day and early bedtime routines. We are not being regimental or stuck in our ways – sleep and rest are vital for our children.

10. Last but not least, please remember that we are still human and we still have feelings. We are still the same people we were before all this happened. It’s not always suitable to catch up with friends and loved ones when our children are around as they need our full-time attention. But we would love if you organised an evening catch up or adult get together that doesn’t involve the children!


Thanks for reading – I hope you gained some valuable knowledge and awareness from this blog.

Wishing you and all yours a very merry Christmas and a prosperous new year!

Monica xGut allergy mummy