Eczema and Skin Management at 35 months TSW (Topical Steroid Withdrawal)

Skin and itch management at 35 months TSW seems pretty simple compared to our treatment and skin/wound care routine at 5 months TSW seen here.

Brian’s current regimen has been as follows. This will likely change (again) as the weather gets cooler, the skin dryer, and the “eczema season” begins once more.

Goals:

  • To keep the skin clean, hydrated, and infection-free
  • To utilize effective itch/scratch management to prevent breaks in the skin
  • To support the body/skin via taking needed vitamins/supplements, monitoring sugar and dairy intake, and getting proper nutrition/hydration, exercise, and sleep
  • Utilizing stress management and deep breathing techniques

Treatment/Skincare Routine: At least once daily shower, followed by application of organic coconut oil (face, extremities, trunk). Hot summer months require a “lighter” moisturizer.

***Lately Brian’s been able to go without using coconut oil (or any) for moisturizer. He still uses it as sunscreen for face and exposed areas when playing baseball.

Infection control measures:

  • Apple cider vinegar (ACV) bath (10 minute soak) or 20 minutes in microsilk tub bath 3-5 times per week,  followed by shower/rinse off and coconut oil or nothing
  • Spray sovereign silver, as needed, on any open areas or broken skin.
  • If all other measures fail and skin/itch worsen, short term oral antibiotics have helped, but thankfully he hasn’t needed them much. In fact, he needed antibiotics more often when he was on topical steroids for his eczema.
  • Change sheets every day

Vitamins/Supplements/Diet: Vitamin D3, Omega 3 fish oil capsules, recommended by pediatrician;  pantothenic acid, DAO histaminase, B complex, culturelle probiotic–supplements prescribed by naturopath to address methylation issues (difficulty processing histamines and sensitivity to eggs, dairy, and fruit-sugar combos) and provide gut support; try to monitor dairy, egg, and processed sugar intake

 Itch/scratch management: Generally 0/5 to 2-/5 scratching (See log for scratch scale.) Cut and file fingernails short. Deep breathing/relaxation techniques, acupressure points, ice packs, distraction. He will use benadryl liquid as needed but hasn’t used it in months.

If needed for >3/5 scratching: Dr. Wang’s purple eczema ointment, The Home Apothecary’s lemongrass balm, moisturizer such as coconut oil, or sovereign silver gel/spray–haven’t needed these lately

Remaining TSW symptoms: (compare to March 2, 2014 at five months TSW and 28 months TSW. )

  • Shedding—As in past 2 summers, progressive decrease in visible, measurable shedding from end of June to now (beginning of September). Now shedding is almost imperceptible even when shaking sheets in morning.
  • Elephant skin—not evident in July, August, or early September
  • Red sleeves, edema—none noted this summer in upper or lower extremities compared to January/February 2016 (feet) 
  • Ooze smell—light to strong ooze smell in May and June but none too obvious from July to now. Heavy night sweating with faint ooze smell was also absent the past few months.

Skin quality:
–Back is soft, smooth but has intermittent eruptions of erythematous papules scattered on posterior scapulae and low back–haven’t pinpointed the trigger

–Shoulders, elbows, knees textured with scattered hypopigmentation from scratching on tan skin. Dry but no obvious flaking

–Still with periodic small breaks in skin on shoulders, elbows, hands, or knees from scratching/picking

–Able to play in the sun and heat and sweat like the best of us–without freaking out

See 9/6/16 pictures

Function: Sleeping through the night (roughly 10:30p-7am). Staying active with 8th grade, travel baseball with 2x/week practice,  cross country, church, golf (which he took up on 8/30/16). Overall, he’s doing well despite “not perfect” skin, but then, no body’s perfect! 🙂

We are very thankful that Brian’s skin is no longer limiting his participation in or enjoyment of activities. So, is TSW finally over? Only time will tell. Fall and winter are just around the corner, and we’ll have to wait and see what symptoms arise with the lower humidity and cooler temperatures.

In the meantime, we’ll continue to praise God for his healing touch, live beyond the itch, and “Play ball!”

You make me glad by your deeds, O LORD; I sing for joy at the works of your hands.”

Psalm 92:4

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

Is it in the Genes? (Part 2)

In the 4/8/14 post “Is it in the Genes?” I mentioned our “educated effort” to pursue genetic testing and naturopathy. By this, I meant that based on what I have read about

1) the MTHFR gene,

2) the methylation cycle,

3) the genetic mutations and how they can express themselves via messed up chemical processes in the body,

4) the need to support the body by providing the missing links that result because of the messed up processes,

5) the relative safety factor in using homeopathy and naturopathy, and

6) Tracy Scarpulla‘s documented improvements in TSW symptoms (and reported improvements of several others) after addressing her MTHFR mutation,

I felt this was a logical path to take to address the possible root cause of the remaining symptoms we’re seeing in Brian. It at least has more science to it than swinging a dead chicken over Brian’s head while chanting mystic chants, spewing magic words, and dancing a “healing” jig. (By the way, this is NOT a knock against any religion or faith practice. It’s just what we students used to say in physical therapy school when a treatment or procedure worked, and we could not clearly explain the results with scientific evidence. Or when all else fails, bring out the dead chicken and start chanting.)

What is the Methylation Cycle?

“The methylation cycle is a biochemical pathway that manages or contributes to a wide range of crucial body functions, including:

*Detoxification

*Immune Function

*Maintaining DNA

*Energy Production

*Mood Balancing

*Controlling Inflammation.” (1)

Proper functioning of the methylation cycle is crucial in keeping this machine we call our body functioning optimally.  Methylation depends on the MTHFR and many other genes/enzymes. When mutated genes in the cycle gum up the gears, the body processes don’t work like they’re supposed to and then gum up other gears, resulting in symptoms we see in conditions like cardiovascular disease, cancer, diabetes, fibromyalgia, autism, bipolar disorder, frequent miscarriages, ADD/ADHD, (2) and poor wound healing, just to name a few.

We cannot fix mutations, but we can try to provide what’s missing so that the gears start working again, and the body can function as efficiently as possible.

Two ladies who do a nice job explaining the basics of methylation and MTHFR in their blogs are Tracy Scarpulla, and Meg. Tracy has an MTHFR mutation, and she believes that she is healing from TSW faster than “expected” because she is addressing the mutation with vitamins and supplements. Meg also has the MTHFR mutation; however, it contributed not to TSW but to a late-term miscarriage.

So what does all this have to do with Brian? Well, Brian 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. All of these contribute to his itching, messed up sleep/wake cycle, and emotional state, and are probably why he was susceptible to TSA/TSW. (Still just a hypothesis.)

 

IMG_0723

Brian’s 19-page Gene & Variation report prepared through MTHFRSupport.com and interpreted by his naturopathic doctor (ND). Genetic testing done through 23andMe.

After analyzing 19 pages of results and Brian’s mutations, his ND determined that the gene mutations to address first and the enzymes that are most important for him right now are BHMT, CBS, COMT, MAO, MTHFR, and GIF.  She chose the therapies that have key enzymatic reactions or support (inducers) to the rest of the system.

His current therapy/treatment includes the following supplements: Magnesium, Molybdenum, Glutathione, and a B Complex from natural sources. Read ND & Genes for more information on Brian’s treatment. He is also taking 2000 i.u. of vitamin D3, as recommended by his pediatrician.

During this visit, she also provided a homeopathic topical ointment and mixed up 3 liquid remedies to try for immediate relief of the itching. In her office, Brian took some of the remedies and actually stopped scratching for at least 30 minutes. When we got home, the results were not as stellar. I asked him why he thought the remedies worked in the ND’s office and not in our house. His response, “Must be the ambiance.”

I would ask for the name of her decorator, but the last time I spent a lot of thought, time, and effort feng shui-ing my bedroom, Brian and his dad turned it into a batting cage and baseball training area.

In addition to the remedies and supplements above, Brian is also supposed to try to drink 40+ ounces of water daily, be active–running, jumping, playing, etc.–and take conscious breaths (deep-breathing) throughout the day. He is to do 10 resetting breaths to help calm his nervous system the itching feeling starts.

Wow! Take a handful of natural supplements, pop a few drops of itch remedy, and breathe deeply. That just seems too easy! It is unless you have a 10-year-old who doesn’t like to take orders from mama….

OBSERVATIONS since starting “gene therapy” 4/4/14

Anyway, Brian’s had 13 days of supplements and 10 days of glutathione. In the first few days, there seemed to be an increase in furious scratching at night and a return of not being able to fall asleep until 1 am or 2 am, whereas he had been getting pretty consistent with falling asleep by 12am. He did complain of a minor headache 4 of 7 days after starting the glutathione, but it could have been from dehydration and lack of sleep. It could also be his body starting to detox, with the itch and headaches as symptoms. The topical itch ointment and remedies kinda sorta maybe worked but not enough for us to get more.

On a positive note, he seems to have more energy (obviously more at night, since he won’t go to sleep!) and he has been able to be awake at 8:30am or 9am without having to doze off for another 2 hours before getting ready for the day. He has been up and active at least 12  hours for the past few days and has not had an itchfest meltdown (that was not instigated by mama.) These are improvements for us. I wonder how much of this is the therapy and how much is just the natural healing process of TSW.

Three days until Easter. I am thankful for this promising new road to travel and still have faith that, sooner or later, Brian will be healed.

“He will have no fear of bad news; his heart is steadfast, trusting in the LORD.”             Psalm 112:7

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….