Allergies take 3! (and more!!)

Check out KFA's _22 Things We With You Could Understand About Food Allergies__

People asked when I was pregnant, what was the chance of the baby having the same allergies as my toddler. It really was 50/50. 2 weeks in, and we already had the first bit of the answer….3 out of 3 children had CMPA. A dairy allergy. In a space of 6 hours I watched my contented baby turn into a miserable, writhing in pain little girl, producing nappies that were not “normal”.

I was so grateful that I had a supportive Health Visitor, who straight away put  my daughter on to the NHS allergy pathway, with a referral to the dietitian, and we made an instant appointment with the GP.

But one thing we didn’t know was how severe her allergy to cows milk protein was, or whether it would be her only allergy. What we did know was that this meant that weaning was going to have to be the allergy led method again. Following on from dietitian advice, we started with our son’s known “safe” foods, trying to build up a base of foods, before testing some of his allergens.

I’ll never forget the day I went for the first of his known allergens. I was nervous. Knowing that this could cause my daughter pain or worse, was not a great feeling. But I had to do it. We were lucky. The first one we tried was apple, and all was ok! Phew! And we tried that because it is added to so much that it was a bonus if she could have it. Maybe I then thought it wouldn’t be so bad or my mind just thought lets go for it, but I then tried another allergen. This time it was one where my son was allergic to  a whole food “family”. The first time seemed ok, so we went on for attempt 2. That night, we did not get much sleep. She was so unhappy. In pain, drawing her legs up, crying, unsettled. We thought it was the sweet potato, but to be sure, we had to try again a week or so later. And yes, it happened again. One little girl, very unhappy. And so her allergen list started.

What we have found is that when she has gut based reactions, they are generally more severe than her brother’s. For example, she can’t tolerate even medical grade coconut products, but her brother can. She can’t tolerate any fish we have tried, her brother can tolerate white fish but not oily fish. She can’t even cope with peppercorns or ground pepper from the nightshade family, he can cope with a little.

But we’ve also got a little girl that doesn’t like to have lumps in her food. After 3 months of introducing food, she will finally have a bit of texture, but this has been an additional challenge. The dietitian recommended focusing on textures over new foods, as this was more important, so the introduction of new foods has gone on hold. We’ve got many more things to try.

So it’s actually been trickier this time round. We don’t have all the answers for our daughter yet and we don’t know if it will be worse than our son or better. But we know it’s currently a very similar path. If we go away, even for 1 night, we take 2 bottles of antihistamines, 2 inhalers, snacks and milk for both children, probiotics to help their guts. The list goes on. Currently there is no epi pen in the kit, but that doesn’t mean their won’t ever be. I’m just grateful that neither has had a reaction that needs one.

So, life as an allergy mum continues. And the one thing I am grateful for is the fact that if nothing else I can be a support to others who are journey some of a similar path.

Check out KFA's _22 Things We With You Could Understand About Food Allergies__ (1)

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The end of a journey

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Over the last couple of weeks, my husband and I had agreed that we would  start to wean our daughter off of breastfeeding and on to formula. It came with a real mix of feelings for me. Sadness in someways as I have enjoyed the closeness and knowledge that I was her main provider, but on the other side there was a huge feeling of relief. It was so hard to actually make a decision, because society has so many feelings about what you should or shouldn’t do.

For us there was the added complexity of her milk allergy, exacerbated by her starting to react to her dairy free formula. So another GP appointment, and another formula, and we could start the process again. But for 5 days I was doing every feed, and what I realised very quickly was that I was exhausted and struggling. I missed being able to do bedtime with our son, because I was having to feed our daughter, rather than my husband giving her a bottle. I was struggling in the morning, as a time where I had normally caught up on sleep, while my husband did the first feed and took both children disappeared.

And then on top I had the mum guilt. I felt guilty cos I was resenting having to feed her all the time. I felt guilty because I couldn’t do things with my son because I was feeding, and when I wasn’t feeding I was too tired to do much. I felt guilty as a wife, because I was so worn out by it all. It was a huge battle I was having internally.

Making the decision to swap to solely formula feeding, was, in the end, and easy one. I knew I couldn’t keep going feeling so tired out by it all. I needed to be able to share the load. I need to be able to say yes to an invite from a friend if I want to go out. I need to find time and space to be me, Rachel, rather than spend my whole time being “mum” or “mummy”.

I have to say, I couldn’t have done the feeding journey I have been on without the never ending support of my online mummy friends. The two dozen or so women who have supported me through the middle of the night endless feeds courtesy of WhatsApp. The ladies on our facebook group that have encouraged me when I was having the bad days. And today, when I shared that I was at the end of the journey, they just loved and supported me some more.

For me, to reach 22 weeks of breastfeeding, is a milestone I never thought I would achieve. In the early days I was under so much pressure from medical professionals to switch to solely formula feeding, and then since then there has been pressure from some friends and family to stop breastfeeding as they think it was invading in to life too much and not what they saw as “normal” as it wasn’t what they had done, to pressure from people to go to solely breastfeeding as “breast is best”. I’ve always known that I was going to have to increase bottle feeds as I couldn’t express the milk needed to do a day or a night without me there, and with returning to work, and settling in with the childminder, it was something I was anticipating.

For me, fed has always been the best option. My eldest was bottle fed from 10 days old. My second was given his first feed by cup, he had 12 hours of tube feeding, 8 weeks of breastfeeding, and then switched to formula. So all very different journeys. Ending the breastfeeding journey now is what is right and best for me, my daughter, my sons and my husband. Because, more than anything else it is what is right for my mental health right not. My journey is not going to be right for everyone, and I know people will have their opinions, but I am going to try not to care. I know my family are going to be happier and that is my priority.

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Food aversions….another thing to juggle,and small steps are big achievements

I’ve talked a lot about the challenges involved with a child multiple allergies.  We are still very grateful that so far almost all are gut reactions, and there is only one that is looking like an IGE reaction. But we are still at a place where our little boy only has 25 foods that we know are safe. But in the last 4-6 months we’ve encountered a whole new game….. food aversion! 

Food aversion is different to being a picky eater.  It’s refusing to eat whole food groups or refusing to eat any food apart from very specific foods.  In our case it started as a refusal to eat anything that required chewing after a period of being ill.  It then also embraced refusing most vegetables and only wanting Ham and cucumber! Tough enough for a child with a varied diet, but trickier with such a limited diet.  

I must admit I am very grateful for our very supportive and understanding dietician.She talked through some good basic ground rules, and gave us some helpful literature. Learning not to make food a battle from early on has been really important. We’ve learnt to give him some closed choices on what he can eat. We’ve made eating about family time sitting together, and we’ve made it fun. But it is hard when you have a child refusing to eat. Even more so when you know every 6 months a health professional is checking his height and weight to make sure it’s all on target (whatever target means??? ) 

We became more reliant on the prescription formula,which still accounts for up to half of his daily calories. We’ve delayed taking a bottle away,as we know he needs to take the formula,even though we know for dental development we need to be moving away from a bottle. We’re having to choose our battles. 
In the last couple of months,and more so the last couple of weeks, we’re seeing big steps forward. New textures aren’t being rejected! We’ve successfully managed to introduce some new snacks that he will not only try, but devour! Things that just mean we can buy a few more things rather than have to make them from scratch! These for us are huge leaps forward! I never knew a little boy’s willingness to eat a pom bear would make me so happy!! 

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.