Allergy fun…..when all the best plans…

This weekend we had the total privilege of witnessing the marriage of one of my longest standing friends. It was an amazing weekend, but that kind of event for us always comes with a few stresses.

Our friends were amazing in their catering planning for the weekend, providing lots of food for me to eat with my allergies, and lots for my eldest son too. We had agreed in advance we would provide the food for the toddler, as we know it is hard to cater for all his allergies.

So with all the best laid plans, there also comes for me a level of anxiety as to the what-ifs that can happen. And we survived the first 24 hours without a hiccup. But with 21 other people around, who are aware to a point, there is always going to be a degree of risk. With a mobile toddler though, you at times need eyes in the back of your head!

We don’t know what, or when, our little guy picked up something he shouldn’t  have, but somehow he ate something he was severely allergic to. An unhappy, itchy baby was bad enough, but the sickness that followed was on another level. I was so grateful for the help of new, but wonderful friends, who jumped up to help so we could sort out a very unhappy little boy.  As ever what amazed me was once his system had rid itself of the allergen, and he was cleaned up, out little boy was back to his happy, chatty self! He tucked in to more, safe, food, and merrily chatted away to people.

We will never know what he ate, if it was a known allergen, or a new one, and that makes it tricky, but what I am learning is that we can only do so much. There will always be a time when there can be errors and slip ups. We try to minimise the risk as much as we can, but we also want our little boy to enjoy life and have as many similar experiences as other children as he can. But we will also spend time raising awareness with others about the dangers of allergies.

No, he currently doesn’t have an epi pen – as currently all his known allergies are non-IGE. But that doesn’t mean one day his allergies won’t become IGE and result in anaphylaxis. It also doesn’t mean that even a small bit is ok. Too many times we have heard people say, “well a small bit can’t hurt can it?” The answer is yes, a small bit can do a huge amount of damage to his gut. As an example, testing mackerel – just a teaspoon of it – resulted in 4 weeks of his tummy being unable to hold any food!

Things are not going to be easy for a potentially long while. I will permanently be grateful to our child minder, who provides him with a safe environment which he adores. To friends who help us have safe play experiences. People who will have him to stay and even provide him with food, which is not always the cheapest or most straight forward option.

Living with allergies and living with a child with allergies isn’t easy, but it is what it is. What I am learning on this journey, is that I need to stop letting people make me feel like it is an inconvenience,but it is ok to be honest and say it is a problem.

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When you just want to make it all better

Some of the toughest days as a parent are the ones when you can’t take away the pain that is making your child hurt. Whatever age, your gut instinct is to protect them and to stop pain.

For nearly 3 weeks we’ve had to deal with the aftermath of the worst allergic reaction with our toddler since they realised he couldn’t have cow’s milk. The biggest problem this time has been that it totally unbalanced his gut. So we’ve had a very unhappy little boy. All because of a few mouthfuls of a new food item – mackerel!!

It has been so hard. You can’t explain easily to a 16 month old that they are going to feel sore. You can only hold them, and at times feel pretty useless that you can do no more than provide cuddles. Encouraging him to eat, when he knows food is linked to some of the pain he’s going through, is tough. But knowing that he needs to eat to have the energy to get better makes it harder. You do all the right things – staple foods, probiotics, water, cuddles, sleep – but it doesn’t make it instantly better.

And then you have the debate and juggle, do we leave him and go to work as normal, or do we stay at home. I know we are blessed with a fabulous childminder who provides him with the most loving environment, and my in-laws who adore him too. But it doesn’t make the choice easier or stop you, as a parent, worrying when he’s not with you.

For me it is one of the juggles I will always struggle with. In fact I struggle with it with both of my boys.  Do I send the older one to school or not? It’s always a balancing act. I don’t think it gets easier in some ways as it is different decisions with different impacts, but you still always want to get it right and to keep you child free from harm.

So there will be days when I can’t take the pain away, but as I mum I will always provide the cuddles.

September starts

I’m not a parenting expert. In fact, I’m not sure that I even believe in the idea of ‘parenting experts.’ I’m an engaged, imperfect parent and a passionate researcher. I’m an experienced mapmaker and a stumbling traveler. Like many of you, parenting is by far my boldest and most daring adventure.
Brene Brown

Like many families September signaled the end of a very busy summer holidays, and back for the final year of school for my eldest son. That for me was a big moment emotionally. Being aware that we are entering a new final phase of this stage of his education and having to make decisions together about the next steps.

But this September also signaled a new routine for me and our younger son on several levels. We have started a couple of new activities in our weekly diary. We have moved to a new swimming class and we both love going for both the social time and the skills it is giving him. Just spending time with him enjoying the water and knowing that he is unlikely to have any reactions while we are there is a huge relief and so I relax. We have also started a Sing and Sign class, which looks at baby signing while doing lots of singing – which he loves. I am really wary about joining classes as it is so hard to find an environment where he is safe and away from his many allergens. But I was so encouraged to go to a space that was clear of allergens and in a place where they understand the potential implications of him coming in to contact with an allergen.

Finally I am now back working part-time. This was a big step for me to take, as I knew it would mean leaving the baby with someone else for part of the week. I know for most parents this is a big thing, and for us it was coupled with finding child care that could cope with our son’s health needs. He has multiple allergies. Currently he only has 17 foods he can eat safely after 4.5 months of introducing foods! I was lucky enough to know a lovely friend who also child minds, and she had space for 1 day a week. With support from my in-laws for another afternoon, most of my hours are covered, and the rest work round my life. The job is the perfect option for me, my husband and our sons. It gives me the flexibility needed for the many hospital appointments I have to go to with the baby, and it gives me the input and stimulation I need for me as a woman who has always loved her career in fundraising.

But leaving my baby for 18 hours in a week is a big thing for me, after 3 weeks it still is. I constantly wonder if what I am doing is the right thing. Is being at work the best thing for me? for my sons? for my relationship? I know it is the right thing. It has given me back a different perspective on life I was missing. It has given me space to breathe and be me. Just me. Not wife or mum. Just me. It has also helped me value my time at home even more. Some days are hard. I am terrified that my baby will reach a milestone while not at home with me. I am worried that my teenager will need my support with school difficulties while I am at the office. I worry, cos part of that is who I am. I know socially it is doing amazing things for my son, and both my in laws and friend who is a childminder totally have his best interests at heart and give him the best care possible, but I am still am mum and will worry. It’s ok to worry. It’s normal.

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Allergies can be isolating & apparently inconvenient!

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This image says a lot. It says how it feels to be the mum of a 5 month old baby with 6 known allergens, without even starting on food. The outline at the end highlights how I feel about introducing food to my baby. It honestly terrifies me!

But what this image doesn’t show is some of the isolation that comes as part of the allergies. Picnics in the park are only going to be possible on days when the pollen count is low, and even then I will be armed with antihistamine plus other bits we use to help keep the pollen at bay. If I don’t, then I will have a very uncomfortable little boy, with scratch marks all over his face as he scratches in response to the pollen irritating his skin, his eyes and his head. Even sitting in our own garden, which soon will have no plants or real grass in it, can cause reactions and we don’t know what to. It’s isolating as it is hard for us to leave him to go out. At the moment the allergens are so unknown leaving him with someone else is hard.

The isolation from conversations I can’t join in because “weaning” is going to be a very different process for us. All foods have to be introduced for a skin reaction and then an internal reaction before a spoonful can be tried.

Having to avoid key ingredients in food for the foreseeable future adds the problem of where we can go and eat. Using jars and pouches of preprepared baby food are not an option. Everything will have to be homemade until we have established what foods are also allergens.

Some people have made comments where you can see they don’t understand the implications. Yes a small amount of dairy can make my baby really ill. His contact reactions to some products like fabric conditioner are so severe the GP did an urgent allergy clinic referral. If he doesn’t have regular antihistamine when the pollen count is high then he struggles to breathe at night.

I’ve been told that his allergies are “inconvenient”. Yes they are….for him! They will be as he grows older too if he doesn’t outgrow them. Being allergic to sorbitol is probably one of the most “inconvenient”. Having to read the back of everything you buy to check the ingredients. It’s not a key allergen so it isn’t in bold like dairy or gluten products. It also occurs in things you wouldn’t realise, including toothpaste and shower gel!

It’s inconvenient that I can’t just pick things up from the shelves like every other parent. It’s inconvenient that I have to pay 2 to 3 times as much for products I have to buy – £5 for a tube of toothpaste! It’s inconvenient that I will spend an extra half hour or so on each shopping trip reading ingredients. It’s inconvenient that I have no quick wins on the first stages of eating. It’s inconvenient to have to go to various clinic appointments at the hospital as we try to understand all of the allergies and how best to treat them. So yes it is inconvenient for my baby and for me. Am I going to apologise if he is going to react to what someone else has on their clothes, or if I “over react” to him coming in to contact with a new substance or a known allergen…? No, I’m not. I will keep protecting him because I also see the consequences.

So yes it can be isolating. It is incredibly hard work to juggle at times. But it is who my baby is and I just have to deal with it daily.

 

How many allergies?? Not sure but I hate them all!

So in my family there is a bit of an allergy history….quite a big bit. But I’ve been lucky. My allergies are pretty minimal, I only have 1 severe allergy, and a couple of bad intolerances. My eldest son has a dairy allergy/ intolerance (they keep changing the boundaries and terminology) which means even at 15 he still has to restrict the amount of dairy he consumes. But that is manageable. 

So I wasn’t too surprised when at 3 weeks old our baby started reacting to cows milk. I then cut all dairy from my diet and the baby was much happier. Unfortunately due to the baby being ill, we had to start introducing bottles. We started with lactose free milk, and within seconds of finishing a bottle, he would bring back milk like when a drill hits oil! He wasn’t gaining weight as they expected him to. The gp prescribed him Nutramigen, a formula that it’s a very broken down version of cows milk. We saw an improvement to the amount of milk he managed to retain, and his weight gain increased a bit. After 3 weeks his formula had to be changed due to a production issue. He was put on Neocate. A formula that has no cows milk in at all. Just amino and fatty acids. Wow! What a difference! All his milk stayed in after a feed! And his weight soared! 

I can deal with a Cows Milk Protein Allergy (CMPA). Everything we eat at home is dairy free anyway. But the allergies haven’t stopped there.

So far we’ve identified at least another 3! We thought the baby had his first cold. But it never seemed to stop. His nose was permanently full of gunk. We then noticed whenever we went out his eyes would get all red and puffy and he would be scratching at them. Overnight his struggle to breathe got so bad he would stop for a couple of seconds before starting again. Scary as a parent.

The gp diagnosed hay fever, and he now has to take piriton daily, and his breathing can still be a struggle. At night we now have to keep our Windows closed, we have a fan with a hepa filter to clean the air, we have a vapouriser on, the crib mattress is propped up and we have to use nasal drops on him during the night. The doctors are reluctant to prescribe more till we see the allergy clinic. My nights are constantly disturbed due to listening to him breathing and hearing when he needs more nasal drops or other help. 

Ok so CMPA plus hay fever, I could deal with that. He had slightly dry skin so started using bath and body wash products that were meant to be good for eczema and sensitive skin. He reacted to it on contact! A red rash appeared all over his skin. Hmmm back to the very expensive stuff then. And another allergen to add to the list. 

3 allergens, I could cope with that. Then, last week, sitting holding our baby asleep on me I noticed wherever his skin was touching my top he was coming up in an angry red rash. By the time we got home his back was so sore and angry. I put him straight in the bath, and we think he was reacting to the fabric conditioner we were using. We’ve stopped using it instantly, but as I realised yesterday when he flared up again, all of our clothes need to be rewashed. 

It’s a challenge daily. The portion reduces the hay fever reaction but hasn’t eliminated it. Daily he can come home from just walking to the shops with red, puffy and itchy eyes. We’re having to reintroduce scratch mittens to stop him scratching himself at night.

As his mum it is exhausting. Although he is “asleep” for between 10 and 11 hours each night, it’s not deep unbroken sleep for him or me. At times I find it frustrating as I don’t know what he’s reacting to, especially when he has a contract reaction. I’m grateful for the nhs, but get frustrated by it too. Waiting for referrals and appointments, and feeling like we’re constantly at the gp. 

I know I’m not the only allergy parent. And I know that some parents have it far worse. I’m grateful for the online support I get from some forums, and from a couple of friends who lives miles away but understand my struggles. But it isn’t easy.