It was a very difficult week for Catherine. Her left cheek and left leg were weeping and raw. I want to think that she got a random flare up as part of the withdrawal process because otherwise, I will go crazy if I start questioning for the possible causes. Since my in-laws are staying with us, we have changed our diet and part of our lifestyle. She is also going through antihistamine withdrawal and I started to weaning off the breast. Despite all this calamity, she has had a very good mood during all these days.
Even though she had a hard night yesterday, today Catherine was happy as always. Yesterday, I woke up screaming when I saw her legs bleeding as a result of intense scratching. I never had that problem before, she always scratches her face while sleeping, but not her legs. Every night, we wrap her arms and legs with bandages and we use tight-fitting clothing to prevent those situations; but yesterday, she found a way to roll up her pants and take the bandages off. I feel guilty because I forgot to put on her the anti-scratch sleeves to avoid this bad experience.
Last night, I was watching the Lorax movie with my son. Something that caught my attention from the story line was the business model of O'hare company; very similar to the steroid cream industry. [READ MORE]
The song "Roar" by Katy Perry has become an anthem of hope for Catherine. This is the perfect song for a family like us desperately seeking something to hold on to. I would say, it is our daily mood booster. The lyrics evoke a courageous attitude, a way to say "I'm going to kick eczema's butt". Part of the lyrics say:
"...You held me down, but I got up
Get ready 'cause I’ve had enough
I see it all, I see it now
I got the eye of the tiger, a fighter, dancing through the fire
Cause I am a champion and you’re gonna hear me roar..."
Catherine is just starting the fifth month of topical steroid withdrawal, so, she still has a long road ahead; but we are sure someday she will win this battle and she will be eczema free. For the moment, we have to hang in there and keep roaring!
We have a feeling that this month is gonna be a good one. First, we have family at home; so, stress shouldn't be an issue. For two months, I won't be worried about cooking, going to the bathroom or going on a car trip.
Second, we will continue relying on the amazing healing properties of apple cider vinegar. We have been adding one cup in her bath since last week. According to many studies, vitamins present in this vinegar have shown to make difference in boosting the immune system and therefore, it is considered a natural remedy to fight skin conditions such as eczema.
Last but not least, we are putting a lot of emphasis in Catherine's nutrition. We are giving her probiotic, vitamin D and cod liver oil as daily supplements. She is eating more rich-mineral foods to create the correct ph balance within her body to function properly.
Even though we are optimistic about this month, we are aware that our approach is not a quick fix. Hopefully, the real outcome will be visible in the upcoming months.
Overall, it has been the worst month since we quit steroids. It was better for only 5 days at the most when we implemented the GAPS Diet. Ups and downs as per usual. She caught a virus and then, the bronchiolitis followed. She didn't wear anti-scratch sleeves for two nights and she clawed her cheeks with her nails. On the other hand, we stopped giving her antihistamine, because she has taken it for more than a year and it wasn't helping her anymore. We just started holistic therapy, an alternative medicine that tend to emphasize proper nutrition.
Having a child with eczema and going through Topical Steroid Withdrawal is not an easy task. In our case, all the attention goes to Catherine; while finances, household chores, parenting, marital stress, and social life become disrupted and insanity becomes part of the daily routine. Read More: The Paradox Of Insanity
The non-flare stage didn't last long. Catherine caught a cold and she has been fussy for the last two days. Every time she is sick or teething her eczema gets worse. It has been difficult to continue with the GAPS Diet since she has lost her appetite. Along with the GAPS Diet, we just started a six month program with an holistic counselor to heal from the inside out. Our first session emphasized the fact that adrenal glands must be functioning properly to decrease inflammation. So, to achieve this goal, Catherine's diet should include more minerals and adopt good sleep habits.
"No! To Topical Steroids" is the only book I know so far that explains Topical Steroid Withdrawal in Babies and Kids. It is written by Dr. Mitsuko and Dr. Kenji Sato, two Japanese doctors who have a lot of experience in Topical Steroid Withdrawal, Protopic Withdrawal and Moisturizer withdrawal. The first pages of this book are heart wrenching with TSW pictures of babies and children showing their progress. The good thing is that all of them end their journey with healthy skin.
Read More: 10 Important Things To Know About Eczema
Catherine's eczema seems to be improving. We introduced GAPS Diet slowly. In the introduction part of this diet, Catherine's food heavily relies on homemade bone broths (chicken and beef stocks) with vegetables. The goal is to detoxify her body. Foods difficult to digest, like starches, grains, and sugars are avoided to allow the gut heals by itself. Since I'm still breastfeeding, I'm also following this diet, but less restrictive.
There are many studies that support the fact that a skin disease like eczema is controlled by the state of your gut. The gut is connected with the skin through the immune system. Therefore, if the gut is compromised, it can affect the body in many adverse ways. To overcome eczema, some experts recommend to repair and restore the gut flora by following the GAPS Diet (Gut and Psychological Syndrome). The diet basically consists in fermented foods, good fats, bone broths and Probiotics. Today is our first day. I'll keep you posted.
Catherine looked so calm with her pacifier in the carseat that my husband forgot to put on her the scratch sleeves. Suddenly, while he was driving, she got fussy and started scratching like crazy. My husband couldn't stop, so he decided to drive faster. He was singing and tossing her toys, but she was out of control. When he arrived home, her face was bleeding. After we bathed her, she calmed down and then, she immediately fell asleep.
Catherine's eczema is improving, the flare up is going away. The skin has started getting dry and had formed scabs. Today, she was very happy singing and playing. The weather is not so extreme, it is 62 degrees Fahrenheit, so we believe this weather is helping her. I have been very strict with food. We have been drinking fresh juices and eating homemade food. At snack time, I offer her fruit and if she refuses I give her vegetables or a small portion of chicken with rice.
Struggling with Catherine's worst flare up ever. Tough days because she hasn't slept for more than two hours for three days. My husband has been helping me a lot during the night. She has been very clingy and I barely have time to go to the bathroom. My three year old son is staying home to help me distract her during the day.
Three months ago, when I was considering doing the steroid withdrawal, I remember reading a blog from a mom that went through the same process summarizing the first 3 months like living hell. Now, I know what she meant.
After getting the 15 month old vaccine, Catherine had a lot of discomfort. She had the worst flare-up so far on her face and body. This month was a roller coaster, dealing with a lot of ups and downs. We only used primrose oil, aloe vera and Cerave as a moisturizer. We did wet wraps on her, twice a day, for just over a week straight.
Catherine is growing emotional and physical, now she refuses to wear mittens and socks.
Catherine's eczema has been affected for the drastic weather. Yesterday afternoon, the temperature reached 90 degrees Fahrenheit and then, early in the morning, it dropped to 55. I also started weaning off the breast, so, it has been a tough day with a lot of crying. It is said that stress doesn't cause eczema, but it can make symptoms worse.
In the morning, Catherine's face looked like she was healing. Unfortunately, later while I was driving, she rubbed her face for about 20 minutes and she made her red patches ooze again.
Our main problem so far is that she manifests her frustration and desperation by scratching her face, arms, body and legs.
After an intense week, the flare up is going away. To make it happened, we went back to the basics, wet wraps, eating homemade food, stay home, and drinking fresh juices.
This week, Catherine's eczema was very time consuming, I was about to give up and I was tempted to used the "magic cream", but then I thought about all the drawbacks in the long term. I think it's better to sacrifice her first years than living with this condition the rest of her life.
I've been trying to wean Catherine off the breast, but it has been unsuccessful. It is not because she cries, but the fact that she starts scratching herself like crazy.
Catherine's eczema worsened on our last trip to El Salvador. However, she enjoyed until the last minute. The flare up was very intense, we were very worried because the red patches on her face were oozing a lot. A famous dermatologist in El Salvador prescribed her an antibiotic to prevent a secondary infection, a very mild steroid cream, antihistamine, moisturizer and copper sulfate baths. He also took time to answer many questions we had.
She didn't improve much with the treatment; however, we felt more tranquil preventing any secondary infection that she could have developed.
I pray everyday for Catherine's recovery. I remember all the people staring at her at the airport making her feel uncomfortable. Thanks God she is only 16 months...
Last night, I fell asleep and I forgot to cover her hands. Luckily, she didn't scratch her face until bleed.
Today we stayed home again and she was very calm; she only got anxious before taking a nap or being hungry.
We only apply Emu oil, Cerave, Aloe Vera on her.
Today we stayed at home and we had a good day. Catherine drank a fresh juice made from fuji apples, carrots, pears, kale and half beet. She didn't feel anxious and played a lot with his brother.
Everyday, we wrap bandages in her arms, legs and body to avoid that she scratches herself. We change these bandages two times per day. Today's bandages showed a yellowish color as a result of weeping fluid.
Catherine was given the HIB and DTaP vaccines, two weeks ago. She immediately displayed a flare up all over her body. Connecting the dots, I realized that every time she gets the shots, she has a very bad outbreak of eczema.
Today she had good attitude and good appetite; however, she was cranky after dinner. Instead of communicating with words, she scratches her legs, arms and body.
At night, we used the wet wrap therapy and we gave her antihistamine. According to practitioners, wet wrapping should be done only for one week, otherwise, it could begin to dry out the skin.
It was a marvelous month for Catherine! Her face almost cleared up and her body was under control. We had family at home, so, she had a good time with her cousins and aunties.
In this month, she gained confidence to walk and we spent quality time as a family. The best of all, Catherine's skin had improved so much that strangers stopped staring.
It was a difficult month. The first 14 days were the most difficult ones when all the symptoms showed up.
The good thing is that she gained weight and grew in height. She got stuck in 17 pounds for months; now, since we stopped using topical steroid creams and Protopic, she gained 2 pounds and incredibly she grew 9 cm.
Challenging moments: While taking a bath and getting dressed
Definitely, my sister helped us a lot during this initial process. I will always be thankful with her for that sacrifice.
When we stopped applying Protopic and Triamcinolone, the eczema spread all over her body, even in parts that she hasn't had before. Coincidentally, we had an appointment with a famous dermatologist here in Miami and when she saw her, she didn't ask anything and said that she had to comeback the next day to be admitted in the hospital for IV and oral steroids. I was in shocked. I tried to explained her that she was going through the steroid withdrawal process, but she looked at me like I was crazy. In the meantime, she performed her a skin biopsy and prescribed her Bactroban, a potent steroid cream, an antibiotic for 10 days, and wet wraps twice a day. The next day, we didn't take her to the hospital for the IV, but we did everything as suggested, except for the steroid cream.
We were convinced that she didn't have any serious infection, because she had no fever or any other symptom. She had good appetite and sense of humor. According to Dr. Marvin Rapaport, the dermatologist who coined the term "Red Skin Syndrome", the most common signs of the Topical Steroid Withdrawal Process are hives, very dry skin, deep cracks, rashes that spread from the skin that was originally affected by eczema, swollen skin, and intense itching. Catherine was experiencing almost all these symptoms.
After a week, we received a call from the dermatologist office saying that nothing relevant appeared in the skin biopsy. Then, we breathed a sigh of relief after a tough week.
Catherine is a brave girl going through Topical Steroid Withdrawal. The goal of this blog is to raise awareness about Topical Steroid Addiction and Withdrawal.
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This blog is not intended to be medical advice