Archive | May 2015

23 month update… moisturizing the feet experiment

Due to some amazing private messages with some long term mamas dealing with TSW for their kiddos, I worked through some of my and my son’s resistance to bathing/moisturizing.  The PTSD for both of us around bathing/moisturizing due to National Jewish Health is quite significant and going to be difficult to finally overcome.

I decided that something needed to be done for his feet which just continued to struggle. We came up with all sorts of ideas. Bathing never happened, but my son let me put olive oil and melissa oil on his feet consistently. I started April 25. I used zinc once, then stayed with just oil for a week. I only did the left foot the first 10 days. I then added the right when we saw so much progress with the left. I also added zinc/tallow balm from Stephanie’s shop (https://www.etsy.com/shop/TheHomeApothecary?ref=listing-shop-header-item-count)​, on top of the oil mixture in the evening at this point. And added socks during the day for part of the day. We’ve been doing this routine now for three weeks and the results speak for themselves. The bathing hasn’t happened yet, but he was able to get his feet wet in the saltwater briefly twice when in CA last week and have minimal stinging, so we are getting close.

I feel quite confident that this is still TSW (as a visit to Dr. Rapaport affirmed two months ago as well) – see the elephanty quality and the very clear red demarcation around the base of the foot. And, even with the *better* looking skin, he is still quite itchy. He has elephant skin on the front of his knees and the back of his knees look quite similar to his feet.

After discovering that our home uvb unit was 75% less efficient than the hospital unit, (thanks, Dad!), we upped the dose significantly, tripling it over the course of 6 weeks.  We have reached therapeutic dose for his face, and continue to increase it for the rest of his body.

Keep the faith everyone.  And don’t be afraid to try and stick with something on one body part for a period of time before deciding it doesn’t work.  My problem up till now is I’d get overeager and do both at the same time.  Problem is, you can’t tell a flare from a reaction when you do it that way.

23 months, one day today.  We did our first boys/mom vacation without Dad last week, as Dad had a work trip.  So we went to San Diego and enjoyed the BEACH and a few other tourist things – a train ride up the coast to Oceanside, a ferry ride to Coronado Island, the Midway and the Maritime Sailing Museum.  All possible because enough sleeping was happening that I could function even while taking care of L in the middle of the night occasionally.  Itch was relatively minimal.  We are trying to live life even in the midst of this phase of our lives.  What a fun time we had!

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Notice the sand on his feet!

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Short sleeves and shorts!

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In the rain and wind wearing socks in his shoes and jeans/jacket!

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April 25, 2015 – left foot before doing anything new

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April 25, 2015 – left foot before doing anything new

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May 10, 2015 left foot, 15 days of oil intervention

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May 10, 2015 left foot, 15 days of oil intervention

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May 18, 2015 left foot- 23 days oil treatment

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May 18, 2015 left foot- 23 days oil treatment

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May 10, 2015 – right foot before doing anything new (uvb starting work more here already because it was worse than the left foot on 4/25/15)

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May 18, 2015 right foot, notice the elephant skin, but the lack of significant lichnification and huge scars now

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