The TSW Roller Coaster

I hate roller coasters! I am very happy with my two feet on the ground and have no desire to feel my insides shoved up into my throat, my eyes bulge out of their sockets, and my cheeks flapping in the breeze, hanging upside down going 60+ MPH. I much prefer holding the bags and hanging out near the dipping dots.

Topical Steroid Withdrawal (TSW) is a rocky roller coaster ride through mostly hell with occasional loops into the sunshine. You are the rider, and you’re stuck holding the bags. With TSW, you have periods of flare–redness, burning, itching, oozing, crusting, insomnia– and, if you’re lucky, periods of calm–>less severe symptoms. These phases alternate back and forth without rhyme or reason with varying intensity and duration and no consistent patterns. A calm, great-skin period can lull you into thinking you are one of the rare few who has healed miraculously quickly, only to find yourself in a full blown flare a few days later. This goes on 24 hours a day for many months, and sometimes even years.

Your emotions, if tied to the appearance and itch of your skin, will be up and down and all around, too. When will the flare end? I’m healing faster than most…Oh, no, another flare! I’m finally healed! Not another flare….It’s over, yay! no more oozing….Will this misery ever end? As soon as I put those special potions on, I’ll be healed, yay….Will I ever get my life back? Can’t wait for this to be over so I can start living….and on and on and on.

After I posted those pictures (4/3/14) of nice, almost normal looking skin, Brian’s skin started having a little flare–not glaring full-blown redness, crusting, weeping, etc.–but some red patches here and there, tiny red spots dotting his skin in no specific pattern, increased number of abrasions and cuts compared to previous weeks. Then his itching got worse, and his sleep was still screwy, and all of a sudden that wonderful feeling of almost being done turned to despair as we realized he still had a long way to go to complete healing from TSW. BUMMER! BUMMER! BUMMER!!! Get me off this roller coaster! Now, Brian loves roller coasters, but he’d like this ride to end soon, too.

These pictures of Brian’s several-week mini-flare were taken yesterday.

IMG_0783

LEFT ELBOW 4/28/14

IMG_0777

RIGHT FOOT 4/28/14

IMG_0781

LEFT FOOT

IMG_0785

RIGHT SHOULDER

IMG_0784

LEFT SHOULDER

IMG_0778

RIGHT HEEL 4/28/14

IMG_0787

RIGHT FOREARM 4/28/14. Actually, red patch in middle of forearm has improved since 4/10/14

IMG_0788

LEFT HAND 4/28/14 w/ small infection in the nail bed of the ring finger

IMG_0789

RIGHT HAND 4/28/14 has actually improved while the wrist has flared–go figure….

IMG_0779

 

Granted, his skin doesn’t look that bad, but it could be better. And we know it could be way worse, so I’m thankful for what we have now.

The nature of the withdrawal process is flares and calms that are reflected in the skin’s appearance. Instead of basing my happiness and his state of healing totally on what his skin looks like, I try to gauge “getting better” in other ways as well. I look at what Brian is able to do now compared to what he did at the start of TSW. We try to enable him to live in this moment as much as possible instead of wishing the time away in misery.  After all, if he is going to be itchy, painful, and miserable anyway, he may as well do it while doing as much as he’s able to do with the people he likes and loves.

His skin and itch may not reflect it, but we know Brian is healing because:

1) He can now fall asleep before 11:30pm.

2) He can now get 2-3 hours straight sleep, more often.

3) He can wake up more often around 9am or 10am instead of 12pm and 1pm to get ready for the day.

4) He has been able to attend school at least 18 of 22 days in April for at least half days. (He’s been out of school since Thanksgiving 2013.)

5) He is able to do more and be awake longer with fewer incidents of itchfests and fatigue meltdowns.

6) Though he’s not yet 100% back in top form, he is able to play a high level of baseball.

7) After school, he is able to run to play with a friend across the street or ride his bike to another friend’s house a block away instead of crashing out on the couch in a scratching, sobbing heap.

The ride is not over yet, but, yes, Brian is healing. We just have to look beyond the skin and beyond the itch.

“Blessed is the man who trusts in the LORD, whose confidence is in him.”             Jeremiah 17:7 

Current Symptoms and Treatments as of 4/28/2014

205 days free of topical steroids(TS)!

As Brian’s sleep/scratch issues and stamina improve, we have been working on Brian’s ability to go to school by starting with half days in the afternoon. When he was able to attend class from 1pm to 4 or 5pm and still be able to be active from 5-9pm without having a major itch fest and meltdown due to fatigue, it was time to progress to a longer school day. (This took the 1st three weeks in April.)

Starting last week, he made it to class by 10am three times and by 10:20am two times. He was able to stay the whole day and ride the bus home 3 of the 5 days. He kept it together in the evening for four days and seemed to be doing pretty well, but by the end of the week, his body had had enough and the marathon itch fests returned for a restless, sleep-reduced Friday and Saturday night. Back to the drawing board.

We went to the pediatrician today for a follow up appointment and got an extension on Brian’s homebound/interim homebound program.  This will enable Brian to continue working toward returning to school full time without being counted tardy or as missing a day of school. If he has a flareup that prevents him from attending class, his teacher will be able to provide the instruction. His teachers, school, and the school system have been very helpful during the past 7 months, and we are very thankful for them and the homebound program.

These are the symptoms and treatments Brian was having up to 4/28/14, which I reported–verbally and in writing–to his pediatrician.

Genetic mutations in BHMT, CBS, COMT, MAO, MTHFR, and GIF
which are being addressed by naturopathic doctor (ND) with the following:

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

1. IMPAIRED SLEEP  Overall, gradually improving: He is more able to fall asleep before 12am, with some setbacks (4/25 and 4/26). However, he sometimes has continuous scratching from 11pm-3am; sometimes to 4am. He’s not yet consistently sleeping soundly greater than 3 hours straight. Still finally falling asleep around 3, 4, 5, or 6 am. Not yet able to catch 8:40am bus to school due to fatigue/need for sleep.

RX: Night time reading, acupressure, deep breathing, parent physical assists with scratching so he can try to sleep. Sleep until he wakes at 8, 9, or 10am to allow him to rest so his body can heal. Now we are able to try a regular bedtime routine, with quiet, calming activities between 8:30 and 9:30pm and the goal of lights out by 9:30pm.  We couldn’t do this before because he would scratch continuously from 9:30pm to 3am.

2. ITCHING  Whole body, with primary areas being upper back between the scapulae and over their musculotendinous attachments to the spine; elbows; dorsum of hands and feet; ankles; thighs; and scalp along the hairline. Still having day time itchfests, but easier to break

RX: ice packs; ice cube massage over itchy part; coconut oil; acupressure; deep breathing/delay scratching; parent physically assists with scratching; Microsilk tub bath; oatmeal bath; apple cider vinegar on cotton ball and ACV baths; Buzzy; medications prn (Benadryl, Zyrtec, Atarax); petroleum jelly; Prid; homeopathic itch preparation. Activites for distraction: ping pong, BBs, archery, baseball practice, active play (still scratching, but not as furious,) x-box, I pad games, etc. Tried naturopathic remedies and pellets: mezereum, petroleum, psorinum, heat combo.

3. BURNING/STINGING Problematic when sweat hits the skin and right after hot water baths and soaks. Despite being told to use lukewarm water, he insists on hot; so he knows the consequences. Lately, he has been rinsing with luke warm water, and the stinging no longer results in as much howling and screaming after getting out of the tub or shower.

RX: Use moist heat when stinging is not caused by sweat; deep breathing; massage of affected part; ace wrapping. When stinging is a result of heat and sweat: towel off, apply ice pack, change to dry shirt, deep breathing, positive imagery

4. DECREASED FOCUS/CONCENTRATION due to SCRATCHING

RX: Now, parent assists <10% of the time with itch management/scratching while Brian sits and tries to do school assignments and other seated activities. Returning to school ½-days and ¾ days (4 out of last 5 days) to increase stamina and itch management and focus in class. Doctor for mind-body training.

5. MENTAL/EMOTIONAL—Emotionally labile, always apologizing, anxious

RX: lots of hugs; constant reassurance; positive music, language, laughter; tough love; participate in activities with friends and practice with teammates as much as possible; prayer

6. PHYSICAL FITNESSnot yet back to normal strength and endurance, but darn near close!

RX: get outside to play baseball, play with friends, run, jump, bike as much as he is able during the hours he is awake. Regular school/afterschool activities as tolerated; continue with ¾-days of school and progress to full days as tolerated; MOVE! STRETCH! BREATHE! BE THANKFUL!

Able to do 4 three-quarter days out of the past 5 days (4/21-4/24) without significant decline in function or melt down. Some increased itching and splotchy red areas noted in the evening. Gradually increasing time being able to be awake with regular activity without ending in a meltdown + uncontrollable itchfest

OTHER:

a) SKIN TEXTURE: Variable. Pebble-grained texture of dorsum of hands and feet and fine sandpaper texture of arms and legs. Skin texture of entire back constantly fluctuates between soft and smooth as a baby’s butt to pebble grain texture, with or without redness, sometimes within 30 minutes. Dry skin, peeling/flaking especially elbows, anterior knees, heel cords, areas of thick skin

RX: Bag Balm to heel cords and any very dry, cracked spots on feet/hands

b) SHEDDING— 1-2 Tablespoons dead skin on sheets every day and shedding throughout day RX: Shaking out sheets, bedding, clothes 2-4 x per day and washing daily; moisturize or not with coconut oil, petroleum jelly

c) EDEMA/OOZING: mild edema in hands and occasionally face. Oozing phases last only a few days and with minimal breaks in skin.

RX: extra sheets to sleep on to absorb ooze and odor; keep skin clean; wrap (arms/hands) if needed with DSD and ace wrap IMPROVED—fewer oozing episodes

d) BREAKS IN SKIN due to scratching

RX: Microsilk tub bath in PM, shower in AM, file nails nightly to the nubs, wash hands, keep cuts clean, ACV baths at least 2x/week, DSD if needed  Are the red spotted areas new skin infection or just abrasion of raised areas of pebble-grain skin??

e) BLANCHABLE ERYTHEMA  It’s baaack!  Redness of the skin (dilation of the blood vessels) that turns white (blanching) when you press on it, and turns red again when you take pressure off. Light red or pink this time, primarily on the back side of body–head to heels. No RX needed.

Little by little….

“The LORD gives strength to the weary and increases the power of the weak.”  Isaiah 40:29

Blog and Log

When I first started this blog in February, I had intended to write daily and was pretty good about it initially. I had plenty of time to write while Brian was asleep because he slept a lot (during the day, anyway.) I could easily take pictures and position him the way I wanted because he really didn’t have the energy to run away from the momster with the camera. Then, real life got in the way.

It’s kind of hard to justify continuing to type with the boy screaming for help in the background, the timer going off and it was set for what?? oh yeah, pancakes! and the smoke detector blaring because the pancakes have been on the griddle waiting for me to flip them since…I put the hot pack in the microwave…after I turned on the water upstairs for Brian’s tub bath….and what’s that dripping on my head?!?! And Brian runs like heck or screams bloody murder when he sees me raise the camera in his direction. At least he is getting better.

Yes, blogging my rambling thoughts often is a luxury now, but I do manage to update Brian’s Log regularly with quick notes to mark his scratching, sleeping, progress, regress, skin, activity, etc. Why? Because I am a geek and like to keep track of things. Also, I would be doing my elementary through high school science teachers a disservice if I didn’t apply the scientific method that I learned from them long ago (with good old-fashioned math) to gather data that may somehow be beneficial to Brian or others going through topical steroid withdrawal (TSW.) I like to document somewhat objective measures of Brian’s symptoms so I can compare then to now, cause-effect, what works/what doesn’t, etc. I also do it because this close-to-half-a-century brain just doesn’t remember things like it used to. 🙂

Oh, shoot, I’ve left Brian to pickle in his ACV bath….

 

Easter Mini-Miracles

The Easter Bunny had Brian’s healing in mind, as his basket contained light-hearted, humorous movies and dark chocolate. After all, laughter is the best medicine, and dark chocolate is good for the heart(1).

Although Brian is not yet 100% healed, we are truly thankful for some mini-miracles this Eastertide. Incessant itching and lack of stamina and sleep have been the main problems preventing him from returning to school, but he has made progress in these areas.

1) On Saturday, Brian was able to play 8 innings in a scrimmage game with his baseball team and had minimal scratching. He played pretty well, too.

2) Yesterday, he was awake at 9 am, made it to school by 9:50 am, and rode the bus home, hopping off at 4:10pm! (His bus comes at 8:40 am, and the first bell rings at 9:05, but it’s a start.) Despite the fatigue of being up early and doing the activities of a “normal” day, there was no “mini-meltdown and major itchfest” in the evening! # hours awake: 11; # hours of “regular activity” (which does not include getting ready for the day and getting ready for bed): 8.

3) Last night, he was able to sleep from 10 pm to 12:50 am, before starting a 2-hour “scratch ‘n sit up ‘n sleep ‘n scratch” session at 1 am. Then he was sound sleep from 3 am -7 am and up by 8:45 am.  Asleep before 11pm? About 3 hours straight sleep plus 4 hours straight sleep? Up before 9am? PTL! We’ll take it.

4) He made it to school by 9:30 am today. Scratching was manageable.

Getting up before 10 am, going to school, and riding the bus may seem like minor things, but for us and Brian they are major milestones. The last time he did this was five months ago in November 2013.

Of course, this is not to say the mornings have gotten easier, because they haven’t. After all, mornings just wouldn’t feel right if we didn’t start off with our usual power struggles, negotiating, and lung expansion exercises (yelling at each other.) We’re taking it one night, one day, one hour at a time and trying to focus on the good to keep us sane and moving forward.

This journey has been a long and painful one, but the light at the end of the tunnel is getting brighter.

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

Easter Eve

The LORD works in mysterious, wondrous ways. Our answers to prayer are not always what we had expected, but they are always what we need.

A few weeks ago, my mother called my cousin who is a physician in Upstate New York to discuss Brian’s condition, get answers, get a “cure” to the suffering. This excerpt in blue comes from his response.

From the blog…”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 ambience.”

That last statement seems to suggest the role of belief. There are things in medicine which are hard to explain: placebo effect when it comes to sugar pills that work on pain, or sham surgery that cures arthritic pain, spontaneous healings that occur through faith in someone or something. I am sure you are not unfamiliar with this.

We do not completely understand how it works. And these healings transcend religion or structured beliefs. What is common among them is a belief on being healed. I use the word “belief” but I suspect that there is more to it than that. It is actually “knowing” that something will work, or more importantly, something is already working. Or more accurately, that healing already occurred. I mentioned above the definition of Integrative Medicine and one of them is the belief in the innate capacity of the person to heal.

I do not profess to understand the power of belief. The science behind it is in its infancy. But from experience, and coming from a Christian background, I know deep down (I use the word “know”) that the body has the power to heal itself. And it is dependent on us knowing deep in our soul that something will work whether faith in God, faith in the doctor, or faith in the intervention. The actual belief is the one that triggers healing. “Your faith has saved you, go and be healed.”

It is not easy in the face of suffering, especially of a child, to ask for faith or belief. Not easy at all when as a parent you would want to take on the burden of suffering vicariously to ease the pain of someone who in your perspective does not deserve to suffer. I do not completely know why there is suffering in this world. I do not know the answer to the question: If there is a God who is so All-Powerful, All-Knowing, and All-Loving, then why is there suffering?

All I know is that it is there, and we are here together to help each other. All I know is that we are given the faculties and means to help. Nature has given us the innate capacity to heal.

It is cliche, but there is a purpose to everything. There is meaning to everything though we may not understand it nor have any inkling to answer events in our lives. Does Brian’s illness bring the family even more closer? Does it open perspectives to other good things in their lives that normally would have been taken for granted? I wouldn’t know. There are some notes in the blog that seem to say that the illness has opened their eyes to the other blessings in their lives.

There has to be meaning to things and my heart tells me we were not supposed to completely understand things but we are asked to trust. We are asked to go through the experience and not judge them. We are asked to accept and not to blame. We are asked to let go, and not to try to control. For it may be that in the “letting go” and “trusting” that we allow healing to happen. Perhaps, the more we try to “do” and to “control” and to “fix”, the more we offer barriers to healing to happen because it already is there and has always been there. All we need to do is know that healing is our right, and healing is already there.

If there is an All-Knowing God, an All-Loving God then this same God knows that there is virtue in suffering. We are more than our bodies. We exist beyond the throes of death. We are more than this identity that we assumed in this life. We are children of God. We are images of God. We are aspects of God. A great philosopher once said: “You are not the ocean. You are the entire Ocean in a drop.” We are in God, with God, and yet God is in us. All of it.

See the perfection in this. See the God in Brian. See His Work in all of this. Then perhaps you will realize that Healing already happened. That healing already Is. And all you need to do is to just believe. If this illness was meant to bring the family to a better understanding of themselves and their perspective of who God is, and realizing the truth that we are much more than our bodies and the sufferings that we experience in them – then perhaps we have answered the question as to what is the meaning of all this.

 Be blessed….

“Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”           Philippians 4:6–7

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