Happy 1/2 Birthday and 5 years TSW!

Brian got his learner’s permit this weekend–a great way to celebrate his 1/2 birthday and 5 years (61 months) free of topical steroids.

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November 1, 2018 (61 months TSW) Look who’s driving now! 

We started this Topical Steroid Withdrawal (TSW) journey on October 6, 2013 when Brian was ten. See pictures from the early months here. Being an inpatient rehabilitation physical therapist with a wound care background, I started this blog in February 2014 to document the clinician-caregiver and patient perspective of TSW in kids: the signs and symptoms, interventions/treatments, and day-to-day challenges of TSW not reported in research or seen in the clinic. It was my hope that the descriptions of the the horrific, yet fascinating withdrawal process and real-time, real-world picture progressions would help medical professionals recognize and prevent this little-acknowledged adverse effect of topical steroids in kids diagnosed with eczema. It was also a way to commiserate with and encourage other parents with kids going through TSW.

In the midst of the sleepless nights, constant wound care, and 24/7 pain, itching, oozing, and shedding skin, you can feel overwhelmed, helpless, hopeless, and alone. But don’t give up hope; keep the faith. Healing does happen, though not as quickly as we’d like. Getting off a medication that doesn’t work should NOT be this traumatic! How did we survive? By connecting with other TSW warriors and through lots of prayer and gratitude.

Try to find something to be thankful for in every painful movement, in every itchy hour, and in every sleepless night. When in despair, it’s hard to be grateful. But we must. Heck, when I was shaking sheets every day for four years, I gave thanks that I at least had sheets to shake!

If you’re angry, bitter, resentful, or still mourning lost years due to TSW, do something constructive with this negative energy so that your child’s suffering will not be in vain. How? Help prevent TSW in infants and children by raising awareness.

*Tell your story to friends, family, physicians, congressmen, mom’s groups, news outlets, and social media.

*Write to the American Academy of Dermatology, National Eczema Association, American Academy of Pediatrics.

*Share your story with medical, nursing, and pharmacy students to help educate these future clinicians on this long-lasting adverse effect of topical steroids.

*Volunteer with and/or donate to ITSAN (International Topical Steroid Addiction Network).

*At the very least, please report your experience with topical steroids to the FDA via MedWatch. Consumers need to report when drugs are ineffective or have side effects. Otherwise, continued safety and efficacy are assumed. If you need help with the report, contact me, and I’ll be happy to walk you through it.

TSW can make you or break you, but we can choose how we respond to past (and current) pain and losses–even the lengthy, horrific Hell-on-Earth journey that is TSW.  It’s been a long, hard process, and I’m very proud of my son for choosing to be better rather than bitter. By the grace of God, he’s stronger and more resilient for having gone through it. And so am I.

“You turned my wailing into dancing; you removed my sackcloth and clothed me with joy, that my heart may sing to you and not be silent. O LORD my God, I will give you thanks forever.”  Psalm 30:11-12

 

In the beginning…November 2013–Seven weeks TSW

and it continued…2016…

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January 6, 2016 (27 months TSW) – 10:15 pm-Wet wrapping the hands and wrists with water before bed to try to keep skin hydrated. Note blanchable erythema in fingers.

 

Nowadays…2018…You’ve come a long way, baby!

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Memorial Day

On this Memorial Day, let us remember the many men and women in our country’s armed forces who made the ultimate sacrifice so that we can enjoy the freedoms we have today.

TRADITIONAL OBSERVANCE:

“On Memorial Day, the flag of the United States is raised briskly to the top of the staff and then solemnly lowered to the half-staff position, where it remains only until noon.[41] It is then raised to full-staff for the remainder of the day.[42]

The half-staff position remembers the more than one million men and women who gave their lives in service of their country. At noon, their memory is raised by the living, who resolve not to let their sacrifice be in vain, but to rise up in their stead and continue the fight for liberty and justice for all.”

 

“Greater love hath no man than this, that a man lay down his life for his friends.”            John 15:13

A Little Clarification

I just want to clarify that “MTHFR” does not mean what you think it does even though the expletive certainly applies to topical steroid withdrawal (TSW) and this hell that currently is our life.

Here’s a description from The Genetics Home Reference Guide.

What is the official name of the MTHFR gene?

The official name of this gene is “methylenetetrahydrofolate reductase (NAD(P)H).”  MTHFR is the gene’s official symbol.

What is the normal function of the MTHFR gene?

The MTHFR gene provides instructions for making an enzyme called methylenetetrahydrofolate reductase. This enzyme plays a role in processing amino acids, the building blocks of proteins. Methylenetetrahydrofolate reductase is important for a chemical reaction involving forms of the B-vitamin folate (also called folic acid or vitamin B9). Specifically, this enzyme converts 5,10-methylenetetrahydrofolate to 5-methyltetrahydrofolate. This reaction is required for the multistep process that converts the amino acid homocysteine to another amino acid, methionine. The body uses methionine to make proteins and other important compounds.

MethyleneTetraHydroFolate Reductase?  The expletive rolls off the tongue much easier….