How to See Progress During Topical Steroid Withdrawal

Since his birthday on 6/1, Brian has made tremendous gains in overall strength, endurance, function, sleep, itch management, and tolerance to sweating and heat. Going into Brian’s 9th month off topical steroids, the light at the end of the tunnel is getting brighter. So what has he been doing since his skin, sleep, and itching have been more manageable and not incapacitating?

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BOWLING with friends (Brian’s the kid wearing the red shirt on the left);

PLAYING corn hole, bocci ball, ladderball, wiffle ball, and x-box with friends in the neighborhood;

BIKING in hot, humid weather with mom & waiting for mom to catch up and catch her breath;

Last baseball game of the season.

Last baseball game of the season 6/22/14

PLAYING BASEBALL in all sorts of hot and humid weather;

and a wee, tiny bit of ‘reading, riting, and ‘rithmatic–AWWWW, MOM!

It’s easy to say, “I’m getting better” when you are 9 months into topical steroid withdrawal and feeling good and functioning almost back to normal, but how do you keep your spirits up when you are just beginning this recovery process or are in day 50, 75, 100 and the redness, burning, itching, stinging, oozing, and shedding are relentless or you are finally falling asleep at 3am, 5am, or 6am and waking up at dinner time? How can you know you are healing when progress is miniscule or seemingly nonexistent? Perhaps by looking at the bigger picture.

Keeping a daily log of symptoms, function, sleep/wake times, etc. may give you some perspective, something to look back on and see your progress. Don’t rely just on your memories of  “what it was like” because I don’t think we truly remember what it was really like unless we have it written down with all the gory details to remind us. I literally had forgotten how bad the nights really were until I re-read my journal and Log entries from the early days. Then I think, “Holy Cow! How did we live through that?”  With patience, prayers, and the grace of God.

I’ve mentioned before that I am a bit anal about documentation–and everything else, for that matter. Well, what started out as a food journal in May 2013–to make sure Brian avoided eggs, fruit-sugar combos, and dairy–became a monster journal that attempted to correlate his symptoms with just about everything: diet (sugar, eggs, wheat, dairy, etc.), temperature, humidity, activity, shower/tub/none, moisturizers/no moisturizers, vitamins/supplements, and stress, just to name a few.

When times are not so good or Brian’s skin is acting crappy or when it feels like Brian’s never going to get better, I look back at one of the early days like day 25 or 50 or one of the previous months like January or April or the daily Log on this blog and compare it to what’s going on now. Then I see that what’s going on now is so much better than what happened in the past, and it reassures me that Brian continues to heal. Reading old entries also makes me thankful for what he is now able to do. I feel joy in the simplest of his accomplishments.

If you are dealing with the physical manifestations of TSW and are miserable, think back at your lowest functioning point. Are you better off now than then, if even just a little? Have you spent a bit more quality time with family or learned to appreciate the simple things in life, like watching your child with TSW sleeping peacefully, even if it’s just for 10 minutes? The low times in our lives are not for nothing; there is value in simplicity, silence, and solitude.

Challenge yourself to find something each day to be thankful for, to focus on what you can do, and to focus on your blessings. It’s not easy, but as you continue to focus on the positives and always do the best you can with what you have, you’ll soon find yourself several months farther down this TSW road and that much closer to recovery.

And remember, there is always one positive constant that you can focus on: you are off topical steroids and doing your body good. Stay strong!

Here are some excerpts of the food/activity logs I’ve kept. Crazy, huh? Well, TSW can drive you crazy if, like me, you aren’t a bit off your nut already. 🙂

CLICK ON PHOTO TO ENLARGE.

EARLY DAYS OF TOPICAL STEROID WITHDRAWAL journaling in Excel (NTS means No Topical Steroids) IMG_0975

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HAPPY NEW YEAR! nearing 100 days….

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FEBRUARY 2014 STARTED BLOGGING AND LOGGING online and stopped excel journaling

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BELOW ARE SOME RECENT LOG (in this blog) entries to compare to early TSW entries. Biggest improvements are noted in Brian’s move back to his own bed upstairs, increased ability to get sound sleep, improved sweating and heat tolerance, fewer incapacitating itch fests, and return to normal 10/11-year-old boy activities. (The most recent date is at the top of each page.)

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It seems that as the TSW is running its course, Brian’s underlying eczema is returning. However, the itch of eczema is now a piece of cake compared to what he has experienced with topical steroid withdrawal. All praise, honor, and glory to God for Brian’s improved health and continued healing!

No matter what your circumstances, may He bless you with peace, comfort, and healing, too. 🙂

“O LORD my God, I called to you for help and you healed me.”    Psalm 30:2

Flares and a Happy Father’s Day

After a week and a half of minimal to no scratching during baseball games in pretty hot weather, Brian was scratching a bit more today while on the field compared to the past few baseball games. A little itch flare seems to be starting up again, but it is nowhere near the incapacitating intensity of past itching. I had my cooler full of ice packs, ice cubes, and iced towels ready for the itchfest, but it never came. What an improvement from a few weeks ago.

We spent the weekend on the ballfields with good company and beautiful weather, and today, Brian and his teammates gave their dads the ultimate baseball dad’s Father’s Day gift: a full day’s worth of baseball and another championship trophy to add to their collection. Go Breeze!

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Virginia Breeze Elite with dads, a granddad, and a brother

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Day 252 and the First Day of Summer Vacation!

After winning their first game in day one of a two-day baseball tournament, Brian and most of his team participated in a surprise birthday party for one of their teammates. The first day of summer vacation should be celebrated with a party and a dip in the pool!

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“Hmmm, decisions, decisions: belly flop? cannonball? swan dive?”

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“Look, Mom! No stinging!”

Despite having access to indoor and outdoor pools and his past enjoyment of swimming and splashing in the water, it has probably been over 12 months since Brian has been in or has wanted to get in a pool due to his skin.  Today, he did great, and his skin felt good. He had a BLAST, and it did my heart good. Hooray for reaching another milestone, Brian!

Looks like we’ll add another activity on our fun list for this summer.

Happy 5th Grade Graduation, Brian!

When I grew up, graduations from high school and college were a BIG deal. Now, it seems we celebrate graduating from everything: preschool, kindergarten, 5th grade, 8th grade, etc. Every event has become a big deal, and some are not just little ceremonies but elaborate programs with all the festivities of high school and college. I don’t know about you, but I feel that we, as a society, have gone a little overboard. 

However, today, I will suspend my critical, judgmental, stick-in-the-mud, party-pooper attitude and happily celebrate with all the other parents of rising 6th graders because today, despite not being in class full-time since Thanksgiving 2013 and despite all the itching and pain and fatigue and hardship he has endured due to topical steroids and topical steroid withdrawal (TSW), Brian has “graduated” from the 5th grade–with honors.  🙂 He and several other students were recognized for being school ambassadors and for volunteering to help as a recess buddies. In addition to making straight A’s for the past 3 grading periods, Brian also received the President’s Award for Educational Excellence. We are very proud of him.

Best of all, from a TSW standpoint, he 1) got to school by the first bell at 9:05am, waking up relatively early after getting a sound 8 hours sleep, and 2) was able to march, sit, stand, sing, laugh, and sweat along with his fellow classmates during the hour and a half program without scratching! He looked just like all the other 170+ fifth graders who were waiting patiently to get their “diploma” and head for the reception that followed.

Yes, today we celebrated Brian’s last day of elementary school, but we are also celebrating his incredible functional progress in just the past 13 days and his continued healing and recovery from topical steroids.  There is still some healing to go, but he has come a long way since his incapacitated state during Thanksgiving. Praise the LORD!

Happy Graduation, Brian!  You have a bright, TSW-free future ahead of you!
Love,
Mom and Dad

“Everyone may eat and drink, and find satisfaction in all his toil–this is the gift of God.”   Ecclesiastes 3:13

Is it in the Genes? (Part 3) Topical Steroid Withdrawal

The last time I posted on the subject of genetic mutations, methylation, and their possible connection to topical steroid withdrawal (TSW) was on April 17, 2014.

At that time, we had just started on some vitamins and supplements (April 4th) prescribed by Brian’s naturopathic doctor to address his specific genetic mutations. So, how’s it going? Well, he hasn’t really gotten worse since starting the vitamins and supplements, and he has been improving. In fact, he has actually gotten a lot better in terms of energy and physical function in just the past 2 weeks. However, is this healing a result of the treatment for Brian’s genetic mutations, or is it just the natural healing progression of topical steroid withdrawal? I don’t know.

This is what he is currently taking:

1/2 tab Vitamin B complex, plant-based
0.104 mg magnesium
0.067 mg zinc
250 mcg molybdenum
100 mg glutathione
2000 i.u. Vit D3 per pediatrician recommendations

The following “it” refers to: Brian’s treatment regimen that involves taking supplements and vitamins to support the inefficient or ineffective body processes caused by Brian’s genetic mutations. “It” also refers to genetic testing and supporting the methylation cycle.

1) Is it increasing the speed of healing? It’s hard to say. My idea of faster healing is that he would have been totally free of all signs and symptoms of TSW 1-2 months after starting treatment for the mutations. That would have been May 4th or June 4th. TSW stuff is still going on. Brian is in month 8; his projected healing time based on usage is 1.6 to 2.4 years or 19-24 months. Check back in month 10 to see if all signs and symptoms of TSW are gone. Maybe then we could claim faster healing?

2) Is it just another fad and a waste of money? It may be another fad, but I don’t think it is a waste of money.  It’s kind of like getting tested for the breast cancer gene. If one has an abnormality or mutation in the BRCA 1 or BRACA2 gene, one has the option to do something about it to hopefully prevent the potential consequence: breast cancer.

In Brian’s case, the genetic testing revealed gene mutations that decrease the effectiveness of his methylation cycle. He has several mutations that are gumming up his gears, resulting in: a build up of histamine (itch); decreased break down of catecholamines (body always on high alert=awake=anxious); decreased ability to break down nitrous oxide; potential for celiac disease/gluten intolerance; difficulty transporting and converting certain B vitamins (decreased glutathione, which is a powerful antioxident); and difficulty with energy transport. We hypothesized that these problems contribute to his itching, messed up sleep/wake cycle and emotional state, and are possibly why he was susceptible to TSA/TSW (still just a hypothesis.)  So, we support these processes with the right vitamins and supplements so his body can run as efficiently as possible, and thereby create a better environment for healing to occur.

My genetic testing revealed some mutations that should be addressed, too, but I am going to wait for a while before getting our ND to interpret them and come up with a treatment plan. I know treatment would involve a change in diet which would be so much healthier for me, but I am just not yet ready to give up my junk food. I know, I know, bad example, mama. Well we only live once, and life without chocolate chip cookies and milk just doesn’t seem worth living.  😉

3) Is it doing anything? I believe so, and here’s why.

WARNING: if you’re uncomfortable discussing bodily functions, skip this section.

Like more people than you’d think, Brian would clog toilet every now and then with his bowel movements (BM). At first, I didn’t know it was him, so as the frequency of clogging increased, I started worrying that it was caused by tree roots getting into the plumbing. Over the first 5 months of TSW, it got worse, and he was clogging the toilet EVERY TIME he went with ginormous stools. It seems that the only thing wrong with the plumbing is that the pipes were just too small to handle what he was dishing out. By January, we’d send him to the bathroom with toilet paper in one hand and a plunger in the other. Evidently, we were not the only ones with this problem because when I googled “child’s large stools clogging toilet,” there was plenty of discussion on the subject. Ahhh, we are NOT alone! This continued as he started the supplements and vitamins on April 4th.

On a follow up visit on May 19, 2014, the doctor did a systems review: How are you sleeping? Are you dreaming? How is your appetite? Any cravings? How is your energy level, etc. We had no major changes to report, but when she asked about bowel and bladder, I thought about it, and you know what? The toilet had not been clogged up in the past 3 weeks! He was also much less gassy since starting the supplements and vitamins. Before addressing the genetic mutations, he sounded like a gaggle of geese, honking their way south for the winter.

His doctor was pleased and said that a lot of her patients with methylation problems report an improvement in their bowels and decreased frequency in toilet clogging after vitamins and supplementation. NO LYING!

So, Brian’s gears (and the toilet) are getting unstuck. As of today, he is sleeping better, “itch festing” less, and can tolerate heat and sweating with much less discomfort than 2 weeks ago. Whether because of the treatment or just time, we’re heading in the right direction and moving beyond the itch.

“Give thanks to the LORD, for he is good; his love endures forever.” 1 Chronicles 16:34

Overcoming Another Topical Steroid Withdrawal Hurdle

Heat and sweat have been bad news for Brian’s skin since January. Initially, the heat and sweating caused his skin to sting, burn, and itch. He often had to stop the activity and go home in a frenzy and tears. By the last week in May, the stinging thankfully stopped, and the sweat and heat caused just the itching frenzy that required ice cubes and ice packs to calm it. He was then able to resume the activity in about 15-30 minutes.

Two weeks ago today, May 24th, we were at a friend’s house for a cookout on a beautiful sunny day, and all of the boys were running around outside, playing wiffle ball. Brian played for a little while but later chose to come inside because he was getting itchier due to the heat and sweat. He used ice packs that I had brought to calm down his skin/itch, and he stayed inside with other kids and played x-box and “Just Dance 4.” I was sad for him because he couldn’t be outside on a weather-perfect day, running around with the boys.

Well, today, we were at a teammate’s birthday party from 4:15 pm to about 8:15 pm–we had to leave early– and all the boys were playing wiffle ball again. It was a beautiful day but a little bit hotter than at the cookout. Brian played, ran,  jumped, and laughed with the best of them in the sun and heat and did not need ice cubes, ice packs, or air conditioning to calm his skin! Even while wearing light jogging pants, Brian had only 1/5 to 2/5 scratching (see Log for Scratch Scale). He had a brief period of 3/5 scratching, but he stayed in the sun, managed the itching by himself without ice, and continued to play with 0/5 to 2/5 scratching the rest of the evening. This is HUGE!

Being able to function fully while sweating is another milestone in Brian’s road to recovery. It also means I can finally leave all those ice packs, ice cubes, towels, and baggies at home. I’m looking forward to traveling lighter.  🙂

“Thanks be to God! He gives us the victory through our LORD Jesus Christ!”                      1 Corinthians 15:57