First 7 days of TSW: A tough decision
"When we stopped Protopic and Topical steroids, the eczema spread all over her body, even in parts that she hasn't had before. Coincidentally, we had an appointment with a dermatologist who wanted to admit her in the hospital for IV and oral steroids. I tried to explained her that she was going through Topical Steroid Withdrawal, but she looked at me like I was crazy. She performed a skin biopsy on Catherine 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. 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 decision."
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. 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 decision."
Month 1 TSW:
"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 steroid creams and protopic she gained 2 pounds and incredibly she grew 9 cm.
Challenging moments: While taking a bath and getting dressed"
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 steroid creams and protopic she gained 2 pounds and incredibly she grew 9 cm.
Challenging moments: While taking a bath and getting dressed"
Month 2 TSW:
"Everyday, we wrap bandages in her arms, legs and body to avoid that she scratches herself. We change these bandages two times per day."
"Catherine was given the HIB and DTaP vaccines. Every time she gets a shot, she has a very bad outbreak of eczema."
"Catherine was given the HIB and DTaP vaccines. Every time she gets a shot, she has a very bad outbreak of eczema."
Month 3 TSW:
"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.
Month 4 TSW:
"Overall, it has been the worst month since she quit steroids. It was better for only 5 days when we implemented the GAPS Diet. She caught a virus and then, the bronchiolitis followed. She didn't wear the anti-scratch sleeves for two nights and she clawed her cheeks with her nails. In this month, we are trying to emphasize proper nutrition."
Month 5 TSW:
"Catherine is more aware about her skin condition. Yesterday, while we were at the playground, someone stared at her for a really long time. She immediately turned her face down and hid it in the swing. I was so mad that I said loudly, 'Catherine, lift your face. You are beautiful and you don't have anything to be ashamed of. It is only an allergy.' She changed her expression and smiled me back. "
Month 6 TSW:
"Another tough month. She caught a cold and had a severe flare up. Her left cheek was oozing for several days.
Breastfeeding issue. I've been so stressed out lately that I'm sure my breast milk has affected my daughter's eczema. I've been trying to wean off the breast several times, but every time I do it, she gets distressed. Every time she feels anxious, she scratches her body, face and legs. Now, instead of putting off feeds, she is asking more often. Unfortunately, nursing is the only thing that calms her down."
Breastfeeding issue. I've been so stressed out lately that I'm sure my breast milk has affected my daughter's eczema. I've been trying to wean off the breast several times, but every time I do it, she gets distressed. Every time she feels anxious, she scratches her body, face and legs. Now, instead of putting off feeds, she is asking more often. Unfortunately, nursing is the only thing that calms her down."
Month 7 TSW:
"Her torso is covered with some red spots. Her legs are very dry and scaly and her left wrist is swollen. At night, she rubs her face constantly and she doesn't get back to sleep until she nurses. I have noticed a pattern that she feels itchy when she feels bored, hungry or sleepy.
Catherine has benefited from Moisturizer Withdrawal. Her skin is getting stronger. Now, she is not using any cream, oil or soap in her body. "
Catherine has benefited from Moisturizer Withdrawal. Her skin is getting stronger. Now, she is not using any cream, oil or soap in her body. "
Month 8 TSW:
"Finally, I stopped breastfeeding. We didn't see any significant change after weaning, so, I can conclude that my breast milk was not the culprit for her skin condition like many people believed.
She still has to use gauzes in her arms, legs and body, because when she is wrapped, she feels more comfortable and she is less itchy. Definitely, It must be something psychological."
She still has to use gauzes in her arms, legs and body, because when she is wrapped, she feels more comfortable and she is less itchy. Definitely, It must be something psychological."
Month 9 TSW:
"Finally, our first road trip since we started the withdrawal process. Catherine has red patches in both arms, torso, armpits and at the top of her feet. She wakes up constantly at night rubbing her face. Now, she hates to use the anti-scratch sleeves, so we have to wait until she falls sleep to put them on, but sometimes, we are so tired that we forget; so, she scratches so bad until she bleeds "
Month 10 TSW:
"I had so high expectations regarding Catherine's recovery on this month that going through another flare up really upset me.
The anti-scratch sleeves don't work anymore because now she turns her body against the pillow to rub her face fiercely.
I can conclude that TSW progress is not linear. Last month, I had the good feeling like we were near the end; this month, I feel like giving up. Definitely, I will need an extra dose of patience for the upcoming month."
The anti-scratch sleeves don't work anymore because now she turns her body against the pillow to rub her face fiercely.
I can conclude that TSW progress is not linear. Last month, I had the good feeling like we were near the end; this month, I feel like giving up. Definitely, I will need an extra dose of patience for the upcoming month."
Month 11 TSW:
"Another stressful month. In summary, Catherine didn't recover from last month's flare up, my husband and I went out of control, we started moisturizing again.
After 11 months, I can resume this process as the worst nightmare ever. I knew this process would be challenging, but I never imagined that my faith and patience would be tested daily. Lack of sleep, emotional ups and downs, stares from rude strangers, intense itching all the time."
After 11 months, I can resume this process as the worst nightmare ever. I knew this process would be challenging, but I never imagined that my faith and patience would be tested daily. Lack of sleep, emotional ups and downs, stares from rude strangers, intense itching all the time."
Month 12 TSW:
"We went to visit a new doctor. Despite the fact we told him about all the steroid addiction and our bad experience, he prescribed her cortisone and a topical antibiotic for 7 days.
We agreed to apply the antibiotic cream, Mupiricin, because we were worried about any serious infection, but we were against the corticosteroid for all the side effects. Thank goodness, he was open minded and said that we could replace it with something natural like coconut oil.
So, we applied the antibiotic cream in the affected areas with a homemade infusion (shea butter, coconut oil, primrose oil, neem oil, manuka honey) and she responded very well.
We are now waiting for the results of her IGG test to know her food intolerances.
We agreed to apply the antibiotic cream, Mupiricin, because we were worried about any serious infection, but we were against the corticosteroid for all the side effects. Thank goodness, he was open minded and said that we could replace it with something natural like coconut oil.
So, we applied the antibiotic cream in the affected areas with a homemade infusion (shea butter, coconut oil, primrose oil, neem oil, manuka honey) and she responded very well.
We are now waiting for the results of her IGG test to know her food intolerances.
Month 13 TSW:
"Catherine's skin is slowly healing. Finally, her face is on its way to clear up. She has been on a restricted diet for about 8 weeks based on the IGG food intolerance test results. It is a long list of restricted foods, but the elimination is for a limited time only.
Regarding moisturizers, we have been applying a homemade cream made with zinc and mupiricin when needed.
Even though Catherine is improving, she is still very itchy. At night, she wakes up 3-4 times. We have tried antihistamines, cold rags, and chamomile tea to relieve the itching, but nothing seems to work."
Regarding moisturizers, we have been applying a homemade cream made with zinc and mupiricin when needed.
Even though Catherine is improving, she is still very itchy. At night, she wakes up 3-4 times. We have tried antihistamines, cold rags, and chamomile tea to relieve the itching, but nothing seems to work."
Month 14 TSW:
"This was a month of mixed feelings. Overall, Catherine looks great, her face is improving and her body is still clear; but unfortunately, she has been VERY itchy. At night, she wakes up two to three times and sometimes, she screams because she can't stand the itch.
As parents of a 14 month TSW sufferer, we feel exahusted. Our nerves are out of control and our patience is gone. We should be very happy for Catherine's improvements but we are extremely tired."
As parents of a 14 month TSW sufferer, we feel exahusted. Our nerves are out of control and our patience is gone. We should be very happy for Catherine's improvements but we are extremely tired."
Month 15 TSW:
"Great improvements! Every day, Catherine looks better. However, she is still very itchy, her skin is dry and scaly, and mild flare-ups occur every now and then."
Month 16 TSW:
"Everywhere we go, people get impressed for Catherine's improvements, even a doctor, who once said sarcastically that we should pray because we were wrong about the idea of Topical Steroid Withdrawal, said that it was a miracle.
We still have a long road ahead because her arms and legs are still dry and itchy and her food options are very limited, but at least she has progressed to clear up without using topical steroids.
Now our life is getting back to normal, Catherine is able to wear a bikini out on a beach and pick up fresh veggies and fruits under noon day sun."
We still have a long road ahead because her arms and legs are still dry and itchy and her food options are very limited, but at least she has progressed to clear up without using topical steroids.
Now our life is getting back to normal, Catherine is able to wear a bikini out on a beach and pick up fresh veggies and fruits under noon day sun."
Month 17 TSW:
"Catherine had a very mild flare up after my last post, but a week later her skin was almost perfect. I said "almost" because her arms have been very dry and scaly like always.
Regarding food, we didn't introduce anything new; I only made different recipes with the same options.
At night, I can't complain because she sleeps better and therefore, we do too. "
Regarding food, we didn't introduce anything new; I only made different recipes with the same options.
At night, I can't complain because she sleeps better and therefore, we do too. "
Month 18 TSW:
"The process of TSW is hard, not only for the withdrawal symptoms, but the low self esteem. Before watching the movie Cinderella she was very shy, she looked down every time people were staring at her or tried to hide her face from them. It was frustrating as a mother to see that scene every time we were in the park or in the supermarket.
After watching the movie, she started dreaming. She believed she was a princess, and she became more confident. Coincidentally, during this time she got better from her skin.
Last week, Catherine met Cinderella at Disneyland, she was so excited to meet her that she hugged her for a long time."
After watching the movie, she started dreaming. She believed she was a princess, and she became more confident. Coincidentally, during this time she got better from her skin.
Last week, Catherine met Cinderella at Disneyland, she was so excited to meet her that she hugged her for a long time."
Month 19 TSW:
Her life is getting back to normal.
