I have written this down many times and always end up pushing it to the bottom of my to-do-list. It’s emotional and heart breaking reliving those first months, recalling the details and looking over the photos.
Yet, to see how far we have come, and rejoice in what we have discovered, encourages me to push through and share our journey. Perhaps someone will read it and find hope and answers in their own situation.
At two months, Paige developed flaky and irritated skin all over her scalp. Over the successive days, the rash moved down onto her forehead and face. As the weeks passed, it covered her entire body.
I put it down to genetics. I have always struggled with eczema and sensitive skin and so we treated her with the same methods that worked for managing my eczema by removing all external irritants. We stopped washing our clothes with normal laundry detergent and invested in a chemical free washing ball. We replaced fabric softener with vinegar. I sewed clothes and linen for Paige out of 100% cotton. We bathed her in unscented cream and my husband and I stopped wearing perfume.
Despite all these measures, her skin continued to get worse.
The advice came thick and fast. Doctors, friends, family, and random people we met in the shops, all asked the same obvious questions regarding our laundry detergent, soap, cream, bathing routines. To each concern, we replied that yes, we were doing everything.
Complete strangers would approach us when we were out and fire us with questions. ‘What’s wrong with your baby?” “Why is she so red?”, “What’s on her face?”. More often than not, I would drive home from a shop or social event in tears of despair.
It seemed like everyone we encountered had a child, grandchild or cousin with eczema, and each one gave me enough repetitive advice to fill a book. I stayed home most of the time, deciding to avoid exposure to pointless scrutiny and emotional breakdowns.
Then there were the creams. Professionals and strangers alike, all seemed to think they had a guru level of knowledge and magical cure for eczema with this or that “miracle cream”. We tried them all, we were desperate, we spent thousands, but her skin got worse.
My baby was suffering, and I was doing everything I could, but nothing was working. I felt like I was failing as a mother.
A friend told me about a homeopathic remedy which they used to treat her daughter’s eczema. I was willing to try anything and excited to find an alternative to steroid creams.
At four and a half months, I took Paige to a local Homeopathic doctor. He reassured me I was in the best place, and that he would flush the eczema from her body with his custom made remedies. Several thousand Rands later, we returned home with renewed hope, foul-tasting herbal concoctions and several pots of strange smelling creams.
As the doctor had forewarned, things got worse. I called him in tears a few days later. In response to my report of her blistering, itchy, red body, he told me he was pleased that it was looking worse. He reassured me that his medications were working and flushing the rashes out of her body as planned. The doctor then said I needed to remain patient and to not give up.
I tried. But with no sleep and a constantly crying baby, it was near impossible.
My husband and I were exhausted. We were taking shifts during the night to hold her still as she was thrashing about so much from the itching. She was burning up all her calorie intake from the constant movement and was not gaining weight. We had to restrain her hands all day long as she would scratch until her skin bled. Even when covered in little mittens, she would rub raw weeping patches into her skin.
Cool water was the only relief. I bathed her three times a day, and often once or twice during the night. There were days when I could barely look at her. When she screamed in pain and frustration, I would cry too. I wanted to take it away, to stop it, but I couldn’t.
Then one day I read a message from a lady on a Mom’s WhatsApp group. She wrote that her son had been suffering from eczema. When even the prescribed creams weren’t working, she had started to wonder if he had a food allergy. After 6 weeks of avoiding the suspect allergen foods, her sons skin was perfectly clear.
I began to think maybe this was something we needed to pursue.
After completing one month of the Homeopathic treatments with no improvement, in fact it was now much worse, we decided to stop. I contacted the doctor and told him I was suspecting it was food related. He again tried to convince me to just keep going with his treatments, that he just needed to adjust the remedies and I would see results. He was convinced that homeopathy was the only way to cure eczema and that he could and would heal our child.
But I couldn’t do it anymore. My emotions and patience were finished. I cancelled our next appointment, disposed of the remedies and decided to pursue the food route. After all, we had ruled out every external factor and I was now increasingly convinced that the rashes were being caused by something internal.
Paige was still exclusively breastfed and her entire source of nutrition was coming from my body. After delving into articles and searching google for answers, I decided to start an elimination diet, beginning with the top 8 allergen foods.
I had to face the reality that it was possible I could be the cause of her suffering through my breastmilk.
Over the next weeks I slowly removed fish, eggs, peanuts and tree nuts, dairy and soy, and then finally gluten from my diet. For a constantly hungry, breastfeeding, hormonal, sleep deprived new mom, this was tough. One evening I almost divorced my innocent husband for eating chocolate in the same room as me.
But I was willing to do anything for Paige. This couldn’t be her life.
I kept a detailed food diary of everything bite of food I ate and took daily photos of Paige’s body to record our progress. We didn’t notice much change for the first weeks. It was discouraging and disheartening to be trying everything with still no results. At times I would crumble in despair, imagining a future of watching my daughter grow up in constant pain and discomfort.
However, after eliminating the allergen foods from my diet for 8 weeks, just before she turned 7 months, we had a breakthrough. Overnight the redness and rashes began to subside. We were astounded, excited and besides ourselves with hope and joy. We took Paige for skin prick and blood tests at an allergy clinic and it was confirmed that she was severely allergic to eggs, peanuts, dairy and gluten.
Her IgE count was 160. The normal level for a baby Paige’s age should measure between 0.0 and 1.8. IgE is an antibody produced by the immune system in response to a perceived threat. Such a high IgE count, meant that Paige’s body was associating most foods as a threat, resulting in her allergic reactions. This high count also confirmed she was most likely “touch sensitive” to the allergen foods and would break out in a rash if she even touched bread crumbs or cheese etc. This meant we needed to remove all the allergens from our house to avoid risk of reaction.
Not news a parent would want to receive, but it was answers and for that we were filled with thankfulness and hope.
As we slowly introduced Paige to solid foods, we added more foods to the list of confirmed allergens. I was breastfeeding her too, so everything she couldn’t eat, I also couldn’t eat. Although a period of trial and error, overall we kept our spirits up and focused on all the foods we could eat, rather than those we could not.
At one stage we considered switching to formula so that I would not have to be on such a strict diet, but we couldn’t afford the extremely expensive allergen free formula. We calculated that we would need to budget R30,000 for a 6-month supply of the hypo-allergenic formula that the doctor suggested. That was not going to be possible.
Today, I continue to breastfeed her. I have resigned from work to look after her and am now a full time stay-at-home mom. My husband has been my pillar of strength and support throughout this journey. It would not have been possible without his encouragement and his careful attention to the re-stocking of my gin cupboard!
We are now a proudly allergen-free house. It’s been an adjustment, a lifestyle-change and a challenge, but I would do it all a million times over for my beautiful little girl. Paige is now 11 months old. Happy and healthy with beautiful smooth skin.
The nightmares of those first months are a distant memory.
I have recently started a blog and website to connect with other mums who are in similar situations. My biggest support through this journey has been through sharing with other mums and knowing that no matter how lonely it can feel at times; we are not alone!