Allergies can be isolating & apparently inconvenient!

allergy

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. 

The beautiful parenting bubble goes pop!

When you are planning a family you have your dreams, your ideals, your perfect scenario.

  • The perfect gap between children – I’d wanted 2 years between mine
  • The perfect family set up – 2.4 kids, nice home, be around to support your children as they grow
  • The perfect pregnancy – blooming for 9 months
  • The perfect labour –
  • When your child is born the perfect baby – follows routine, eats well, sleeps well, meets development stages full on
  • You go out each day doing all the perfect mummy things with a perfect outfit, make up and hair

Hmmmm…..the reality is miles away from this.

I will hold my hands up and say that my dreams, even the second time around, were up there. Maybe I should have known better. Maybe some of my memories from 15 years ago had faded and gathered a rose shaded tint over time. But also I know I was lucky the first time around, I had a baby that slept well, was healthy and incredibly placid as long as the milk came on time!

This time, I am holding my hands up and saying yes I have been struggling. My perfect bubble has definitely gone pop…in fact it was a very loud BANG!

3 hours of uninterrupted sleep is now a luxury. The few nights that have been longer than this we can now see have been more linked to when he’s been on antibiotics. An achievement at the moment is being out of bed in the morning and showered before my husband leaves for work….if I don’t do it then, then it won’t happen till he is home in the evening. Getting dressed in something that is clean and reasonably appropriate for the weather is about all I manage. If I’ve had a reasonable amount of sleep, then the hair dryer might get out, and I might find my way to putting make up on. But that is certainly not the normal routine. High days and holidays maybe!

I have struggled with almost weekly appointments at either the doctors or the hospital. Having a little boy who isn’t 100% most of the time is tiring. The money spent on hospital parking is just frustrating! Having to constantly explain again and again symptoms to doctors is exhausting, especially when they say that “babies this young don’t get recurrent infections like this”. Each week I have to also remember to order the next weeks supply of formula. I have a baby who is even more allergic to dairy than his older brother and his formula has to be prescribed. Its not like I can  just go and buy some formula when we get low, and more often than not the pharmacy have to order it in. I even had to justify why I needed twice as much, to cover us going away and the bank holidays!

I look at the house sometimes and just want to cry at all the jobs that need to be done. I hate that in the evenings I am snappy at my husband and teenager because I am so tired and just need some head space. Going to be at 9pm is not my ideal, honestly!

Yes this is the reality. I wouldn’t be without my baby for anything. I’ll even consider having another in the not too distant future (not the next 18 months, but not another 15 years!) The reality is I find day to day tough. Some days are better than others. Some days I actually don’t feel tired at all. Other days I feel like going back to bed at 9am.

This blog isn’t for sympathy. I guess it’s for a normal perspective for people who want to read it. It’s also my way of processing and dealing with the challenges, and maybe just showing the world that parenting isn’t this beautiful bubble the is painted in the media.

This morning on Good Morning Britain, there was a wonderful slot showing the reality of normal parenting (watch here) and my friend Laura reminded me that life as a parent can be a juggling act, and I only have to juggle 2 children!

Socks!

Yes socks! They have become a very crucial part of my attire on a daily basis. Yes I’ve always worn socks when needed, but I didn’t worry about who else was going to see them. Now I spend about half my week in situations where other people see what’s on my feet! 

I know this might sound like a small thing to get worked up about, but it really causes me to panic.

They have to now match when I go out. They have to go on the correct feet. (I’ve got pairs that make a picture when side by side!) And really importantly, they can’t have holes in! Yup I really do think this much about socks when getting dressed! The rest of my outfit might only get a 10 second thought process, but I’ve got a bit paranoid about my socks.

The reason for this, I don’t really know. But now I attend lots of baby groups where we’re sat on the floor without shoes on I really think about it. Even just going to Slimming World to be weighed I have to take my shoes off so the socks have to be ok.

I think this is probably just where my ocd tendencies are coming out and its a small thing I can control in a period of life where lots of things are out of my control, but it is slightly crazy to have become so obsessed by socks!

Savouring every moment

This seems like a strange title to be inspired to write when I’m in bed at twenty past eleven at night, with a very awake 5 week old who has just had to have a complete pj change plus mini hair wash due to bringing back up milk, while hiccupping and having a nappy change!!! (The multi tasking capabilities of a baby!!)

But these moments are also the ones that it is important to cherish. No, not the clearing up after all of the above, but the baby in my arms, the big eyes staring up at me, the closeness as I hold him. All moments which I am very aware will one day just be a distant memory. I want to make the most of every stage. 

Looking back over the last 6 weeks of my life I can already see how my baby has changed. Small things like growing big enough to now fit into some new born size baby clothes. Seeing how he is taking in more of what is going on around him. Watching him experience a new texture or sound. Seeing the way he studies his reflection in a mirror. No these things aren’t big enough to make it onto a baby milestone card, but they are big in his life journey so far. Each moment just as precious and a building block. But rather than racing him on to the next stage, I want to savour those we are experiencing now.

Maybe I am more aware of this as a second time mum than I was last time. Last time I still appreciated every step, but it also felt like it was always a competition on who would get to the next milestone first. Who would do it best.

I understand that there are development stages, but I want my boy to get to them when it’s right for him, not cos I want him to beat his peers. To me he’s not mummy’s chin, daddy’s eyes, grandad’s nose . While he might have those traits, he’s a little person, unique in the world and making his way along the path set out before him. He’ll get through each stage at his pace, I’m just walking the walk with him.

My prayer for my boys

I pray the Lord will hold you close and keep you through the night,
That you will wake up smiling in the early morning light,
That He will always comfort you and make you brave and strong,
I pray that you will follow Him your whole life long.

I pray that you will grow up to be wise and good and true,
I pray that you will please the Lord in everything you do,
I pray that you will hear His voice and learn to sing His song,
I pray that you will follow Him your whole life long.

I pray that you will follow Him,
I pray that you will follow Him,
I pray that you will follow Him your whole life long.

I pray the Lord will bless you with His presence every day,
I pray he will protect you every step along the way,
Help you love what’s right and lead you far away from wrong,
I pray that you will follow Him your whole life long.

I heard the words of this song by Twila Paris this evening while settling my baby and know that this is my prayer for both of my boys.

Anxious parenting

Am I getting it right?

Is my baby growing ok?

Is he developing at the right rate?

Is he sleeping too much? Not enough? Is he feeding enough? 

So many questions are constantly running round in my head at the moment. I never thought I’d be an anxious parent, but this time around I am anxious. Last time I was incredibly laid back. I took each day and each development step as it came. Now I’m constantly wanting to know if I’m doing it right.

As one friend very helpfully said, looking at the pregnancy I’ve had and the end of pregnancy being very stressful, plus the first few days of my boy’s life were not plain sailing so it’s not surprising! I need to take the pressure off myself. Also what my mummy friends and I have noticed is that the professionals that we have regular contact with can be very picky. We celebrate the gaining of 2 or 3 ounces of weight. They are concerned because they aren’t tracking against the weight chart line in the way they “should be”. In our house today we celebrated getting to 6 pounds! The professionals want him back on a line on a chart! I know they are doing their job, and I know if they missed something important I’d be holding them to account, but maybe they need to learn to deliver their thoughts/advice in a more supportive way?

Like any parent I am, and always will be, fiercely protective of my boy’s. I not only want what’s best for them, I want everyone else to want what’s best for them and to help them on their journey of life. I also feel like I’m having to prove something. To myself, to the world. Proving I can do having a baby again after 15 years. I know that’s another pressure I’m putting on myself that is unnecessary. I know I need to stop doing it, but that is hard. I know a lot of this comes from my insecurities and no one can fix this but me believing in myself. I will get there. 

I love being a mum to both my boys. They give be such joy. I wouldn’t swap the role of being a mum for anything, I just need to step back sometimes and be less hard on myself!