This is a long post. I wanted to be as detailed as possible in case it helps anyone going through the same problems as we have had with Arlo. If anyone has any specific questions, please feel free to drop me a comment/email/tweet.
Arlo has always had problematic skin, I can’t remember a time when he was completely free of rashes and dry patches. He had dry skin when he was born, and spent his first three weeks peeling all over.
He then developed really horrendous cradle cap, all over his scalp and eye area. I would smile politely at strangers’ suggestions of vaseline or olive oil, knowing that I’d tried everything and nothing was shifting it.
Just when we thought we were over the worst with the cradle cap and peeling skin, I noticed red patches all over his body when Arlo was 11 weeks old. He had just had his bath, and I spent a worried few minutes on hold to NHS direct thinking that I’d somehow scalded him, before Sam snapped me out of my panic and reassured me that it was just dry skin. Since then, his skin has never been clear of rashes or dry patches.
His skin worsened. The red patches became sore and weepy. Everyone kept commenting that eczema in a breastfed baby was unusual. My milk, the stuff that was meant to be so good for Arlo, was failing him. My breastfeeding morale was very low.
Arlo began screaming when getting dressed and undressed. His arms were particularly bad, I felt guilty every time I had to put his arms through the arm holes as I knew it was really hurting him. To this day, he still doesn’t like putting his arms through the holes in clothes, although he is much more easily distracted with a toy or a song (on autopilot, even now, I start singing just before I’m about to put a top or vest on him). I wonder whether these earlier experiences have had an effect on him.
Trips to the GP were, frankly, useless. They dismissed me as an anxious mother, one even spouted some rubbish about not being able to diagnose eczema until the child is three years old. He told me not to worry about it, all babies get it. All I wanted was to stop Arlo’s discomfort, I felt helpless enough as it was, and had hoped that a medical professional would be able to give me some decent advice, or at least listen to my concerns. I wanted a referral to a dermatologist, I was denied and sent home with lotions and potions, all of which seemed to make his skin worse.
I started googling. I found that eczema in young babies was often linked to food allergies, the most common of these being a cow’s milk protein allergy.
Arlo was exclusively breastfed. I decided to cut out the common allergens from my diet to see if this made any difference. So, no more dairy, eggs, soya, nuts and fish. I also cut out spicy food and alcohol. I didn’t cut out wheat, it felt like too much to do a full elimination diet and I was concerned for my milk supply.
The next few days were awful. Arlo threw up every feed. We were at Sam’s parents house at a big family gathering and I wasn’t prepared. Arlo soaked all his muslins and I had to started using his blanket to mop up his sick. He was in such distress. I had heard that symptoms might worsen on an elimination diet, so, horrible as it was, I took this as a good sign. After four days, the sick episodes were happening with less frequency. It was usually just the evening feeds that bothered him. After a week, any reflux episodes were a one-off.
In between this time, I spoke to a health visitor at baby clinic. She had seen us a few times before, and had been the HV who had carried out my home visit when Arlo was a few days old. Arlo’s skin was the worst it had ever been. Finally someone else saw my concern. She said she could refer me to the specialist infant dermatologist at our nearest hospital. I didn’t even know HVs could make referrals. I carried on with the elimination diet and waited for our dermatology appointment.
Arlo’s skin improved after around two weeks of me being on the diet. The red patches disappeared.
By the time we saw the dermatologist, he just had patches of dry skin which didn’t seem to be bothering him too much – although the eczema was still on his cheeks (this continues to be a problematic spot for Arlo). She prescribed more lotions and potions (neither of these helped either – we have since disovered that Diprobase seems to be the only cream that does not cause a reaction). But I now had contact numbers in case his skin worsened again, and Arlo’s GP was informed of our dermatology visit and the consultant’s analysis of Arlo’s skin – so no more bullshit from the doctor about it not being eczema and we could get help if we needed it.
We still don’t know exactly what his allergies are. We know that dairy definitely affects him through my milk (haven’t tried given him any to eat yet). Soya also affects him, usually more than dairy does. His skin is very easily irritated. Baths and water dry out his skin. Food in contact with his skin causes itching and red patches. Clothing and perfume can cause him to break out into a rash. He is fine with wheat. We have yet to test the other allergens.
In hindsight, Arlo had a lot of symptoms which are linked with a food allergy. It all seems really obvious now, but I didn’t really notice some of these symptoms until they ceased once I stopped eating dairy and soya products. He had a near constant cold. He was congested and snuffly. His snorting used to make us laugh, now I think it was all allergy related. His farts could clear a room, but the smell stopped once I was on the elimination diet. Reflux often goes hand in hand with food allergies – another issue we’d been having with Arlo that was making him miserable. The contents of his nappies were just not right either (although that only really changed for the better once we introduced solids). His eyes were puffy and swollen.
I feel so awful whenever I think that he was suffering for the first three months of his life and I kept on eating things that were making him worse. Since that point at three months old, he’s been a lot happier in general, but it’s been a long old road of trial and error. Adding things back into my diet and trying to work out what caused a reaction (Was it something I ate, was it a skin irritation caused by a cream, was it someone’s perfume?? All of the above can affect Arlo). Weaning added another factor into the guesswork (was it something he ate or something I ate??). Every time we have a setback with his skin, his cheeks and chest flare up, he scratches until bleeding, and we have to wait around two weeks before his skin heals and we can test something else out. I hate it. Every time I test, I know I am going to make his skin worse. But it has to get worse before it gets better. There is no other way to work out what he is OK with and what he is definitely NOT ok with.
His cheeks are now the main problem area. When they are really bad, Arlo wears heavy-duty scratch sleeves at night, otherwise we find blood stains on his sheets and sleeping bag by the morning. Once he’s broken the skin, it becomes harder to stop him scratching, and increases the risk of infection. When he eats, it is impossible to keep food from spreading around his face. As soon as this happens, he starts scratching away at his cheeks. And then after he eats I have to wash his face which causes more irritation. Doing this three times a day on broken skin only makes it worse. He pulls bibs up to his face and uses them to rub his skin. I can’t feed him in just his nappy because food irritates his bare skin. So, unfortunately his clothes bear the brunt of meal time mess, getting stained in the process. He is so used to scratching that even when his skin isn’t a problem, he automatically starts scratching as a reaction to stress. It’s a constant battle to stop Arlo from scratching at his face and chest.
We have been back to dermatology several times when his cheeks took a turn for the worst. At one stage they got infected and he was on antibiotics for three weeks (the first lot of antibiotics didn’t get rid of all the bacteria).
Occasionally he will have a random flare up, and I have no idea of the cause.
Arlo’s cheeks have looked like this for most of the last four months. I get a lot comments at baby groups, ‘Is his rash infectious?’, ‘It looks like he’s grazed himself’, ‘Is he teething?’.
I have found an online support group on a message board, where I can chat with other parents who are experiencing similar issues with allergies and eczema. They have given me some priceless advice and it is an invaluable support to be able to talk to people who understand how frustrating it can be and how helpless you feel when a setback occurs.
At the moment his skin is going through a good patch. Last week, his cheeks were better than ever. Not so good this week because I decided to test his allergies by allowing myself one chocolate bar. Here is his face today.
I am still excluding dairy and soya from my diet, but I’ve been able to add back in alcohol and caffeine (Phew!) Nuts and eggs don’t seem to cause Arlo problems when I eat them. As someone with a very sweet tooth, it was initially difficult to cut out dairy, and I couldn’t believe how many products contain soya.
I am learning from my mistakes – not all sunflower spread is completely dairy free, Hellman’s mayonnaise contains soya, most supermarket bread contains soya flour, and Ciabatta is sometimes made with milk. If someone makes me a tea, I need to make sure the teaspoon has not been used in my mug after stirring the mugs with milk in, or that a buttery knife has not been used in my pot of jam. We cook with coconut milk and dairy free ‘Pure’ butter, so eating at home is no problem. Although I do miss real chocolate. But Arlo comes first obviously, and with that in mind it is easy to stay dairy free.
Eating out is tricky. I am used to waiters thinking I am completely anal, and used to the awkward line of enquiry that usually follows my food requests:
‘I can’t eat dairy’
‘Why, are you lactose intolerant?’
‘No, but my son is allergic’
‘Oh, OK. But why can’t you eat it then?’
And so on…
Because of his issues with dairy, I plan to breast feed Arlo for as long as possible (He can’t have cow’s milk or cow’s milk formula). This may prove difficult when I am back at work, but my attitude is to cross that bridge when we come to it.
My more immediate concerns are the challenges that summer will bring in the form of sun cream and swimming. I am really hoping we can keep his eczema at bay and stop any flare ups from getting too uncomfortable for him.
I have worries for the future if his allergies persist – having to keep Arlo away from food at parties, Arlo missing out on Easter eggs and cake. I hear that a lot of childhood allergies are outgrown by the time they hit school age, if not earlier. I hope that one day soon Arlo will be able to eat whatever he wants and we won’t be constantly checking food labels.