Things had got bad. Really bad. Despite my son’s valiant efforts at improving his sleep (here), thanks to his eczema, things had gone downhill again – quickly. I have been, until very recently, holding him down in the bed next to me to stop him scratching so incessantly and manically that he just couldn’t sleep. I would hold his little arms down (sometimes legs as well, since he would rub his feet together to itch his ankles) until he fell asleep, then I would need to wait a while, then I could sleep for about an hour until he woke and it began again. This was hard work. When I started back at work it got a lot harder.
Every time we changed his nappy or clothes, it would be the same – as soon as he had access to bare skin, he would scratch like a lunatic, as if trying to inflict as much damage to himself as he possibly could in the shortest amount of time. Every morning I would take a deep breath before looking at him, to brace myself for the disappointment of seeing his little face, reddened and sore from another night scratching, despite my efforts, while I slept. When my husband got home from work, I would brace myself once more, waiting for his disappointment at the state of his son’s skin if there had been a flare-up during the day.
Those that have met my son in person are probably surprised when I speak about his skin like this, as he usually doesn’t look like an eczema-ridden baby. He really doesn’t. I expect people wonder why we’re so obsessively slathering him in greasy emollients, why I dress him in long sleeved tops and leggings, why we don’t go to the beach, or sit on the grass, or visit farms and petting zoos. For the same reason we bought an air conditioning unit for his bedroom and expensive therapeutic silk pyjamas. Because even though it doesn’t (usually) look that bad, when he gets a chance he will itch, itch, ITCH until there’s nothing left. And anything we can do to avoid or relieve that itch and minimise his scratching, we will do.
Flare-ups can happen in just seconds. He goes from looking almost completely normal (bar a few dry patches) to having vivid red patches and spots all over. The allergy nurse once asked how many flares he has, and I couldn’t even begin to answer as they are so frequent and unpredictable.
As I said, things had got bad. Holding him down all night, monitoring him for allergens all day…it was not fun, and impending return to work made it even more important that we find a more manageable way of living. Although I’m not writing this for sympathy, I find it hard to explain how miserable I was. After an appalling night of scratch duty and arising at around 6, sometimes earlier, the only way I could buy myself a nap in the day was by lying down again and feeding the baby back to sleep. This sometimes worked and sometimes didn’t, but still only bought me another hour’s sleep at most. Sleep deprivation aside, when could I do the laundry? Make lunch? Let alone dust and hoover?! His inability to nap (without scratching) except beside me, in my arms or in a moving vehicle meant that I had no spare time. For week after week after week. I felt I was disappearing. Drowning in his needs.
I should add here that in conversations with our GP, health visitor and allergy nurse I mentioned our difficulties. It was hard for me to admit it, but by around May/June time I had to tell these three professionals, “I am not coping.” No helpful advice or additional support was forthcoming. I pride myself on my independence, my ability to do things myself and achieve things for myself. Maybe that’s why no one helped me, because it didn’t seem like I needed it that much. An articulate, professional woman of nearly 30 is not top of the priority list for anyone. But I wasn’t coping.
Doom and gloom aside (hooray!), three things have happened in the past few weeks that have turned my life around, and my son’s too. None are really miracles, but when they showed results, it sure felt that way!
- Miracle the first: swaddling.
- Miracle the second: the eventual acceptance of The Bottle.
- Miracle trois: Dr Aron’s eczema treatment.
My husband must be feeling very smug right now, because he had been mentioning swaddling on and off for a long time. Each time I had listed my reasons against, and refused to try it. I didn’t want him unable to scratch an itch – how torturous. Even when holding him down in bed, I would rub his scalp gently for him to relieve any itching. I didn’t want him to overheat. I wasn’t exactly sure HOW to swaddle; knowing there were safety risks such as SIDs and hip dysplasia, I felt nervous. And finally, he just seemed too old. Swaddling is for newborns, not nine-month-old babies.
Well, one night I got desperate, googled ‘safe swaddling’, grabbed a cotton sheet and wrapped him up like an adorable little burrito. He went straight to sleep. In his cot. He slept for hours. I, conversely, got half an hour’s sleep that night. No joke! I couldn’t do anything but lie there, staring at the baby monitor, waiting for that cry to come. The only reason for him being so quiet must be death or kidnapping…so I checked on him again, and again, and again. And he wasn’t dead, he was sleeping. Apparently babies do this thing where they sleep for hours on end? Pfft. News to me. He woke a couple of times, but as I’m sure you can appreciate, a ‘couple’ of wakes for a feed or cuddle was beyond improvement; it was a complete turnaround.
At the same time, I had been persevering with the unwelcome Bottle for day time feeds. I felt that night time was unrealistic, as he was (at the time) feeding off and on all through the night as we coslept in our miserable, itchy, uncomfortable bed. However, since the swaddling meant we could return him to his room, it was time to introduce night time bottles. Within an amazingly short space of time, he was taking a bedtime bottle from my husband, which freed me from bedtime duties, and before long he would take a few sips from the bottle once or twice in the night then go back to sleep. As it stands, he wakes once or twice during the night for a quick cuddle and rewrapping, then once in the early hours for a small drink of milk and that’s it! Although the end of breastfeeding brings mixed feelings, which I will write about in an upcoming post, the sense of freedom it brought for me was enormous. The success with swaddling and bottles is also thanks to…
Dr Richard Aron. Now, if I told you I’d found a doctor on the internet and paid him to send me eczema cream you might think I’d been victim to some internet quack or been swindled. However, this doctor is a renowned dermatologist whose work with eczema has a huge international following. After researching him and his treatment regime, my husband and I decided to go for it. After paying an initial fee and emailing our son’s history and photos to the dermatologist, we received back a prescription and instructions. We then had to order the cream from a London chemist and it was quickly delivered. Within 24 hours his skin was enormously improved and the itching was very much reduced. The cream isn’t a miracle cure, and isn’t advertised as such, but it did show fast results. Within days we could dress our boy in shorts and tshirt without having to police his constant scratching! The simple joy of seeing his hair, usually greasy with emollient, turn fluffy and fair was indescribable. The true test of this treatment will be when we ‘taper down’ applications and see how effectively we can maintain his skin without regular applications of this cream, but for now I am happy. Even if the money and time we’ve spent only buys us a summer of shorts, paddling pools and fresh air, I’m happy.
So, after weeks of unhappiness at the hands of eczema and sleeplessness, our lives have been changed. How quickly things have turned around! I know it’s not forever, and I know things change (they already are!) but I am so very grateful for the sleep and the contentment I have enjoyed the past month, I can’t even begin to describe it. If you’ve read this far, congratulations, it was a mammoth one!
All parents face different struggles, and mine have not been half as hard as others’, I know. But when things have been tough, and are better, I think it’s right to acknowledge that.
Things were tough. Things are better. Thank you.
What have your greatest challenges been? There is no competition, as everyone’s story is different remember! But it’s healthy to share experiences and learn to empathise with different struggles. I hope that any parents struggling as we were, will receive love and help and sympathy from all.