Over the weekend we celebrated baby I’s first birthday.. A few days to go until his actual first birthday.. It was tiring business – party planning, mingling, entertaining the boys! I’m glad we’re done!!! Until the next big birthday thing (21st, we agreed!). Here’s the birthday boy!
Was sorting out his pictures in chrono order and it took me two hours on a hazy public holiday. Looking through the pictures brought waaaaay more emotions than I had expected. You see, my little boy has severe eczema, and it hit him the worst between 6 to 8 months old. Those 3 months of our lives were pure madness.
I thought I would chronicle this because at my darkest moments, I was scurrying through blogs, hoping someone could shed some light and give me some advice – like real REAL life sharing of what’s it like, what was done, how it was, whether it worked.. I yearned to read something that reflected the turmoil within myself.. I couldn’t really find much, with the exception of one blog. I will talk about this later.
J grew up with a host of allergies. Both he and his dad had eczema. We didn’t think very much about it. E suffered moderate eczema, but we eradicated much of it once we discovered the trigger to his eczema was an egg allergy. So after banishing eggs (in every form) from our household and diets, his skin improved a lot.
So while I was pregnant with baby I, I was told to take probiotics as it supposedly reduces the risk of eczema. So I did! Religiously!! Baby I was born was beautiful skin, a little dry like all of us, but nice rosy cheeks (our boys have rosy cheeks, taking after mine! Haha!). At 4 months, his skin began to be a little patchy so I brought him to see E’s allergist and he took a prick test that showed an egg allergy (which was expected). I had already been avoiding eggs anyway, so I didn’t think very much of it.
Yet after eradicating eggs, his skin didn’t seem to improve. In fact, it got worse. My baby who had already begun to sleep rather well (sometimes through the night) was wakeful at night, scratchy and unhappy. So we brought him back again at 6 months – and was told “your son has moderate-severe eczema, I will increase the dosage of the hydrocortisone cream 0.5 to 1% and if he doesn’t improve, he may need a course of oral steroids.”
At this point, I was really afraid. I’ve heard much about steroid creams and was ok with it. But oral steroids?! It sounded quite insane and lethal. The allergist assured me that it was very safe and scheduled a review in a week’s time.
I panicked. Decided to find out as much information as I could. Since I couldn’t find any blogs, I joined a Facebook group that was all about eczema. This group talked very much about TSW (topical steroid withdrawal) and did not recommend steroids for possible side effects. It went well with me. If possible I wanted to avoid the oral steroids. So using the group as a guide, I started on a journey of helping baby be steroid-free.
So came the journey of oatmeal baths, different types of non-steroidal creams, essential oils, natural healing methods, Chinese herbs, probiotics.. Anything that was attested to be good, I would try it.
And all the while he just kept getting worse. From dry skin, to patches, to stubborn patches that wouldn’t heal, to weepy patches, to blood, to pus.. It was horrendous. Every time I bathed him, he would scream in pain. I remembered E’s delight at bath times and couldn’t understand why bathing was hell for baby.
He wasn’t eating well, he began to lose weight. I began to lose weight as well, trying to eliminate various things that could cause a reaction in my diet as he was breastfed.
He wasn’t sleeping well. In fact, he hardly slept. He would wake every 1-2 hours from the itch and discomfort. And his wakefulness would wake E, who could hear the commotion. We didn’t sleep for months. It was very dark and depressing.
The lack of sleep was affecting me so much I began to be resentful of the baby. Every moment was difficult. He was so difficult to love, and that was difficult for me. I always felt guilty, not good enough and wondered why he was making our lives a living hell. J and I were so exhausted we were unhappy. E was upset and needed attention too, which I was frankly, happy to give. It was so much easier to be mummy to E.
My sweet smiley baby was slowly becoming angry, upset and sad. He hardly smiled and was always whiney. I wanted to much to cuddle and love him the way I could with E, but it almost always ended bad. And I would huff and puff about my difficult baby.
My parents begged me to use the steroid creams again, but I was unwilling to. Each day of being steroid-free was one day more right? Until I could no longer function with the lack of sleep, I brought baby for his vaccination and my pd was very concerned. He saw the infected skin and asked me why I was doing what I was doing. I simply said I didn’t want him to be on oral steroids. It was bad. Pd then suggested we do a thorough blood test to be sure of the allergens. We agreed. Baby was also prescribed 2 doses (on 2 different occasions) of antibiotics to treat his infected skin. The test results showed a high reaction to peanuts. My boy has a serious peanut allergy too!
So after the whole thing with the pd and finding out the latest allergen, we consulted our pastor – who is a doctor by training. We shared about how the eczema has robbed us of our joy as parents and we could no longer function. His advice? To go away for 2 nights – to sleep. And that was probably the best advice ever. We went! Thankfully our mums chipped in to help with the kids and we went for a staycation and slept. And slept. And slept.
Of course it didn’t solve the eczema. But it did refresh our brains. One sleepless night, I prayed over Iain the way I would – asking God for wisdom, for protection, for healing. As baby slept, I stumbled upon the blog I was talking about and for the first time, I read about a mother’so experience with eczema and steroids. And Guess who their Doctor was? My kids’ allergist. I felt prompted that it was time to bring him back to see the allergist, 3 months past his review date.
The doctor looked at him and said “why didn’t you come back when you were told?”
I said I was afraid of the oral steroids and wanted to try alternatives.
He gave me a very stern look and said “your baby is not a Guinea pig.”
That really made me mad but since I was already there.. He prescribed a 5 day course of oral steroids. (Details in future posts) in a nutshell, he got better those 5 days! But my nightmare wasn’t over. After the dose, the eczema came back in full force. My happy baby was back to his normal scratchy self. ๐ฆ
Brought him back again (I camped out quite often at NUH then) and was told it was not advisable for another dose. My emotions were really Low then, after experiencing a happy baby for a week, it was back to normal. He was prescribed another 2 types of creams and we were asked to come back if it worsened.
Till now, it’s been 4 months. I haven’t gone back yet and will be going back for his review in a couple of weeks! I’m happy to report that he is much better. What worked? I really am not sure about the medication, but definitely God’s grace. He still flares up every now and then, but it has been manageable. Sleep wise, he doesn’t sleep as well as his Brother, but nothing compared to those nights.
To God be the glory!
A Long post to set the stage for more detailed posts about treatment, tests, products and how our family coped. Hope everyone is still awake! You’ve reached the end of this post ๐ I am detailed because a condensed version would not do anyone justice.
*feeling emo*
Promise to write more about this soon!