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!

When sleep suddenly means so much!!!

So like all parents of new babies I have spent the last 2 and a bit weeks discovering just how little sleep I can function on, and how much sleep I need to feel “human” or “normal”!

Thank goodness it’s no longer the 8 hours I needed at least 3 nights a week before having my first child! And I am in a small way grateful that my eldest son was a sleepwalker, and did not give me more than 2 consecutive nights of more than 6 hours until 2 years ago! It means my body has not fully gone back to expecting lots of sleep. Plus add in to that the joys of pregnancy and the aches and pains, and constant toilet trips needed in the night, that do prepare you for having a baby and losing sleep.

However, less than 2 hours is a limit I’ve never even hit when my insomnia was bad. And when those precious two hours are not even consecutive I’m really starting to struggle. Plus in my waking moments I not only have to function for myself, but I also have to function enough to provide for a small person who is totally dependent on my. I also have to still function as a parent to my elder son, and at times be able to help with GCSE homework.

Last night was the first night of me doing the majority of the work in terms of changes, winding, settling the baby back to sleep, on my own. Hubby has been a great support, but he is back to work today. For the last couple of weeks he has taken the baby early in the morning allowing me a longer block of sleep – as much as is possible between feeds! Yes I have been very blessed by this, and I know not all new parents are able to share the load in this way. But boy do I know about the difference this morning.

All the health professionals, and mums out there are probably now screaming at my post that I need to sleep when the baby sleeps. Yes I know this theory. I’ve even shared this wisdom with other new mums, but it’s hard to do when your body has decided it is now up and awake for at least the next few hours and sleeping at this time of day is an alien concept that the brain has not yet processed. I also know I still need to eat and drink and do all those other things you need to do just to function as a mum each day.

Am I unique in these feelings of tiredness…..nope! I know other new mummies that are part of my amazing support network are feeling it too. I know mummies all over the world feel the same on a daily basis. So why am I writing about it?

I am writing it down because it helps me process what is going on. It  helps me rationalise and realise I am just normal. I don’t have to be super mum and achieve everything in the first day of being on my own. I just need to do enough that my children have what they need to survive the day. I don’t even need to worry that they and I have what we need to get through tomorrow (tough when I am a control freak at times, and like to be planned and in control!) I just need to worry about today. About the now. This for me is the biggest challenge in many ways. Yes a new baby comes with many new challenges, but the biggest ones are the personal challenges, where you have to learn to let go.