January 2025 – Simi's trinkets and treats

Day 46 of Hazel’s Topical Steroid Withdrawal.

Topical Steroid Withdrawal (TSW) happens when someone, in this case my 4 year old, stops using Topical Steroids. The affects include, red itchy skin, mood swings and body temperature dis-regulation. Having TSW means that Hazel is tired and moody the whole time. Its almost like having a sick child. This means that we’ve been stuck indoors for more than two weeks. I was in the mood to get out of the house. Taking care of a child with TSW can be emotionally draining on a parent. It requires a lot of patience. They scratch their itchy skin. They cry because their skin is burning. I just really wanted to talk it through with a friend.

I’ve arranged to meet one of my friends for coffee before she starts work again on Wednesday. although Hazel’s energy levels has been low, she has shown interest in going for walks the last couple of days. I also just wanted to get out of the house a little bit. I agreed to meet my friend, Carla, at the local Beach Cafe. The cafe looks out over the beach. It offers a beautiful view of Rangitoto Island. Rangitoto is a volcanic island in the Hauraki Gulf.

When we arrived at the cafe, it was already very busy and we had to sit inside. It was loud and Hazel complained about the noise. I told her that it was because it was so busy inside. She was happy with that answer. We proceeded to order. Hazel wanted a strawberry ice cream. Because it is pink. My friend and I both ordered a sweet Chi Latte. We didn’t stay too long as it was too noisy. We then went for a walk along Takapuna Beach.

I needed to talk to someone about how TSW has affected not just Hazel but also me as a parent. Because TSW makes her skin itchy she scratched night and day. This means that we often don’t get enough sleep in as we wake up every time that she wakes up. In turn, Hazel feels grumpy because she hasn’t slept enough during the night. We all know how important a good nights rest is. Imagine how hard it is to operate normally. We haven’t had a proper night’s rest in more than three months. As a parent it also makes me feel tired, impatient and incredibly overwhelmed. Talking about our experienced proved to be therapeutic. I was having a lovely time talking to my friend. I didn’t want to go home yet. We agreed to go for a walk in the local mall.

Instead of it being a lovely relaxed time it turned into something else.

Once we got into the store, Hazel wanted to go home. She wanted to be carried around and she wanted to leave. She started crying and shouting. I then said to her that I won’t carry her if she’s shouting at me. Remember she is a feisty 4 year old. She then proceeded to scream and nothing I said calmed her down. I then decided to move myself away from the situation. I told her that I need her to calm down. I will come and talk to her when she’s calm. I sat down in the little chairs they have in malls, about 1.5 meters away from her with my back to her. This did not help either as she continued to scream. I watched her in the reflection of the shop window across from me. People were staring at her and asked where her mommy was. When they saw that I was right there, people gave me that “oh, she’s having a moment” look. Then they proceeded with their day. Eventually a lady took her by the hand. She asked her where her mommy was. Hazel started to calm down. When she was calm, I moved closer and managed to talk to her. All in all this was very embarrassing and took a lot from me, trying to pretend I couldn’t hear her.

Behavior management Tip

During this experience, I set a clear expectation for her. I said, “When you calm down, you can come and talk to me.” I made sure she was safe, by placing myself close enough to her to intervene if needed. I faced away from her so that she can’t see me responding to this unwanted behavior. I then used a strategy called Ignoring. If we ignore a behavior, eventually it will stop. Still, with toddlers and young children, it is important we always check that it is safe to ignore a behavior. It is important to make sure that your child is safe during this phase.

According to He Mapuna te Tamaiti “It is important to remember that when we ignore, there will usually be a period within which the behavior escalates. During this time, it can be unsafe to ignore. If after a period of ignoring you decide you can no longer ignore and must respond to the child’s behavior, the behavior will be strengthened. So decisions to ignore need to be made very carefully.”

Always remember to ignore the behavior and not the child. Once your child calms down, be kind and friendly when they behave appropriately.

Our little girl was born in 2020. She started off with some dry skin patches over her tummy. That summer we noticed that she gets really red, weepy patches of skin in the folds like her knees, elbows and under her chin, in those little rolls that babies always have. I took her to the doctor and they gave us some creams. At about 7 months old we took her back to the doctors and they said she had eczema. They gave us a “lovely” little tube labelled Hydrocortisol 0.1%. This stuff was amazing. When we applied it to her skin, by the afternoon it seemed like her eczema was cured. There were a few really important things that we weren’t aware of.

No. 1 Do not apply it on the face or genital area. The doctor prescribed it to apply to her face for the eczema. Additionally she was prescribed another cortisol cream to be applied to her bottom because her her bottom seemed to have dry skin.

No. 2 Do not use it for more than 2 weeks. Unless otherwise prescribed by a physician. We weren’t warned about using the steroids for extended periods of time. Instead we were told “If the eczema flares again, apply the Cortisol (Steroid cream) to the affected area. What happens here then is that after 2 weeks the eczema is completely gone. Then she would get a viral infections or the weather would change and the eczema would return. Which in turn means that we were applying the cortisol again.

Fast forward 3 years. Our little girl is now 4. She’s been using the cortisol creams on and off again since she was 7 months old. When we request more cortisol from the doctors they would send as much as 6 tubes at a time. This practice shows that there is no concern from the doctors in the amount of cortisol we could use. As a note I would also like to add that even the Dermatologist told us to keep using the cortisol if the eczema returned.

Earlier in 2024 her eczema flared because of a viral infection she had. Her eczema was mostly concentrated at the back of her knees and in the folds of her elbows. So we again started applying the cortisol. This winter was more wet and humid than the previous year which means she had more eczema flares than the year before. By August it seemed that her eczema was actually getting worse. It was now down the length of her arm, down the side of her body, all over her thighs and on her cheeks. I had contacted a skin specialist but was waiting for an appointment. By October she was hospitalized because her skin was all red and weepy. She was prescribed stronger steroids/cortisol and antibiotics. After about tow weeks of antibiotics the eczema returned. The red skin on her arms, legs and trunk didn’t get any better either. it only got worse.

In November we managed to see the skin specialist. What we thought was extreme eczema turned out to be something else. It was in fact Topical Steroid Withdrawal. Our child’s skin had stopped making it’s own cortisol to protect itself. Her skin had become overly reliant on the topical creams. We had to start a weening process which was only the beginning of our struggle…..

Symptoms of Topical Steroid Withdrawal

Red, itchy skin. Eczema in places where your child has never had eczema before. Eczema type rashes concentrated on sides of rump, large areas on legs and arms, and neck. Eczema that looks like a red sleeve on the arms. If your child are experiencing any of these, they might have Cortisol withdrawal.