First 7 days of TSW: 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:
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:
"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:
Month 4 TSW:
Month 5 TSW:
Month 6 TSW:
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:
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:
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:
Month 10 TSW:
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:
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 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:
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:
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:
Month 16 TSW:
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:
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:
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."