Update and TSW Treatment

Gabe started topical steroid withdrawal in mid-February of this year so he is 4 months in. 19113521_10158905728715074_8900016741876609406_n

The bright red skin of the first two months has faded and now it just looks like he has horrible eczema/was in a car crash.  The areas that still look really awful are where we applied steroids the most and longest- wrists, feet, ankles and legs.  His face is flaring though we never really applied steroids and he never had eczema there.

His energy levels are still maybe 35% of what they used to be.  He still spends a lot of time sitting in his favorite spot, the recliner.  He is able to be active and enjoy some quality of life thanks to some supplements we do everyday.

Right now what is really helping him is astaxanthin.  It’s a super potent antioxidant that is reportedly 6,000 times more powerful than vitamin C!!  I carry him out of bed in the morning and after breakfast he chomps up a 12 mg capsule of astaxanthin and within 10 minutes he is feeling 80% better and is able to get up and run around and be a normal kid.  His mouth is perpetually stained orange but it works!!  Astaxanthin is a naturally occurring antioxidant found in red algae (and sea food).  It’s what makes flamingoes pink!

We still give him CBD oil (yes, from marijuana) when his pain and anxiety levels are very high.  We give him 3-4 drops and he holds it in his mouth for 30 seconds before swallowing.  It really helps him and the benefits go behind pain relief.

We also give him detox baths every other day.  Epsom salts, dead sea salts, lavender oil and sometimes a bit of bentonite clay.  He likes the water very hot and even though it usually stings at first, he never wants to get out.  It’s the only place he doesn’t feel pain or itchiness.

Gabe also take probiotics and drinks a lot of kombucha.  He is constantly asking for fruit so we try to stay stocked up.

His sleep is still a nightly struggle.  So 1-2 times a week we give him 10 mg of hydroxinine to help him get some uninterrupted sleep.  We get a break and he gets to sleep through the night without shredding up his skin.

I just ordered liviaone topical probiotic spray and I am pretty excited to try it out.  I really think it will help Gabe heal because of so much of what he’s been through (similar to most people with eczema/TSW) destroy good bacteria on the skin- the steroids, the antibiotics, and bleach baths…. that I really feel he will be able to heal much more quickly with the introduction of healthy bacteria to his skin.

What I’ve tried that hasn’t been successful-

A high grade sodium bicarbonate (baking soda).  There is a lot of buzz about safe soda helping people heal very quickly on the TSW pages.  Problem is, this stuff is super expensive and hard to get.  I tried what seemed to be a similar alternative but without success.  I haven’t ruled out safe soda but it’d be painful to spend $60+ on a small contained of baking soda.

Essential oils.  I’m a huge user of them.  I’ve used them near daily for the past four years.  I just can’t put them on Gabe because his skin is so sensitive that they make him worse.  A couple drops in the tub is ok, applied topically just seems to be too much.

Homeopathy.  Granted we went right in the beginning and we were exhausted and overwhelmed.  We left with like 20 supplements all with complex directions.  Half of them were pills that he couldn’t even swallow.  It was basically a waste of $500.  It probably would have worked better later on in his treatment and if it was more simplistic and doable.

 

Suffering and Heaven

18920650_10158894564500074_8516742202078951748_nYesterday I took just Gabe out shopping.  I don’t often get to spend alone time with him and I was reminded what an amazing kid he is.  He has such a tender soul.  He wants to run an orphanage when he grows up… but he also wants to drive a Ferrari, so… 😉

We had a fun time, just the two of us.  On the way home he kept asking me about Heaven and what it’ll be like when Jesus comes back.

I explained to him that Jesus will appear in the sky with great glory, riding the clouds.  That every eye will see him, even those that pierced him.  That we will rise to meet him and be changed, to be like him.  That there will be no more sickness, death, pain…

I got choked up and so did he.  He said, “Mom, I can see him coming.”  I said, “honey that’s the Holy Spirit showing you that it’s true.”

You see, just the day before he had been in a lot of pain.  In between tears and sobs he had asked, “if God loves me, why am I suffering so much?”

The conversation, and the sweet presence of God, was something we both desperately needed.  Something that I need more of.

In my own suffering I tend to turn away.  I feel like I can’t take anymore disappointment at times, without losing hold of my faith.  But yesterday, it was like He peeled back the curtain obscuring eternity and gave us both a glimpse of our future and the end of suffering.  I felt a glimpse of the eternity and wonder awaiting us, and looking over at Gabe’s tear-filled eyes, I know he did too.

I know that Gabriel is being molded in ways I can’t even begin to comprehend.  I know he has a huge call on his life.  Even at the age of 8, there is a level of tenderness, empathy and hunger for knowledge of God that is amazing…. probably as the result of all the suffering he’s had to endure.

We can got lost in the hardships we face but we need to remember that life here is short and eternity is long.  We can’t choose the trials but we can choose how we face them.  Our God loves us.

 

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Autism and Detoxing

I’ll be totally honest, this has been the first summer break I haven’t dreaded. Why? Because my oldest child, Michael, is on the autism spectrum with a side of A.D.D. It’s difficult to understand the strain and chaos that can entail if you don’t have a child on the spectrum.

That’s why I’ve always felt like I needed the break I get when he’s going to school everyday. Michael, like many other ASD kids, does best with structure and routine. Summer break just unravels all of that and leads to…well, stress that was enough to make me dread it months out.

I honestly haven’t this year, at all. Michael has made major progress. He’s been taking silica everyday and I think it has really helped.

See, I’ve done a ton of research (yes, I’m a proud google-mamma) and I believe all his neurological symptoms are a result of the synergistic toxicity described in this pub med study… https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3170075/ and others.

I had Michael very young and I did everything wrong. He got all his vaccines, and always with Tylenol.  It’s kind of a miracle he didn’t end up in worse shape.

But anyways the cumulative toxin overload essentially poisoned his brain and the resulting autistic symptoms were merely the result of cumulative vaccine injury.  He developed primarily sensory and behavioral issues.  Unlike other kids, we thankfully haven’t had to deal with food allergies, asthma, or gut problems resulting from his vaccine-injury.

Sierra….where’s your proof? I never had a dramatic event following a vaccine.  Michael never had a seizure or lethargy (that I can remember). He just went from being a sweet, bubbly, laid-back baby to a completely out of control toddler with major sensory issues. 192254_10150438180300074_8167383_o

I’ve no doubt in my mind that Michael was born perfect. The vaccines set him up for years of heartache and struggle….not to mention putting an enormous stress burden on myself and my husband in dealing with the fall-out.  His autism is nothing more than the degree of vaccine injury that was inflicted onto him as an infant.

For years I had heard about detoxing to reverse autism but I always assumed it was ridiculously complicated and out of reach for an average parent like me.  I just didn’t have a ton of hope that Michael could get better.  We dealt with the same behaviors and tantrums for years.  But then I saw this article http://realfarmacy.com/mineral-waters-remove-aluminum-from-brain/ …Detoxing and improving neurological health in ASD kids could be as simple as drinking a bottle of Fiji water every day.

I talked with Michael about it.  Smart kid that he is, he read the article and really wanted to give it a go.

There’s a big push in the autism community that we need to celebrate our kids autism and act like everything is a-ok.  Michael doesn’t think everything has been great.  Not when he didn’t have any friends at elementary school for two years.  Not when he struggles to control strong emotions he can’t always understand.  Not when he started to realize he was different.

He was extremely gung-ho to start, to the point that he begged me to get him a big supply of Fiji water.  It was touching and also kind of sad that he wanted so badly to gain healing from his autism.  We started right away and also bought him solgar’s oceanic silica (because everyone kept drinking his water!).

That was about three months ago and Michael has made major progress.  The tantrums have been less.  He seems more relaxed and happy.  He is just easier to be around.  Hence me not dreading summer vacation. 19055433_10158911764265074_4485162110289028260_o  I don’t think autism is something to be celebrated.  It has been like a cloud hanging over Michael, obscuring who he really is.  We owe it to our kids to help them to truly heal, so they can become that person they were meant to be.

What causes autism?  It seems glaringly clear to me.  It’s the synergistic toxicity (and the sheer volume) of the shots kids receive.  As the vaccine schedule has doubled and then tripled; autism rates have exploded.  It’s the toxins we spray so we can have pretty, bug-free lawns.  It’s the franken-food we eat.  It’s low vitamin D levels.  It’s the mthfr gene expression which makes it harder for some kids to detox the harmful adjuvants in the vaccines.

When 1 in 3 kids have a chronic health condition- we need to wake up.  In spite of (or because of!) our current vaccine schedule; kids are sicker than ever.  Somethings got to give when the projected autism rate is 50% of American children by 2025. http://www.inquisitr.com/1735694/autism-will-afflict-half-of-the-american -children-by-2025-and-glyphosate-is-to-blame-mit-doctor-says/

A Good Day

Yesterday was a good day.

My little girl turned five on Thursday and my mom and step dad came out last night.  They gave her possibly the best gift for her- a gumball machine! 18519821_10158791140855074_8977889329133441059_n Shiloh is a bit obsessed with gum so it’s perfect for her.  Gabe had a good day too.  His little friend came over and he got to play and have fun like a “normal” kid for the first time in a loooong time.  Then he felt up to playing outside with another friend for another hour and a half.  Lots of giggling and running around.  It made me so happy because since we quit topical steroids nearly three months ago he has been going through hellish withdrawals and had many days where he had to carry him because he was too weak and in too much pain to walk.

20170519_182541So he had a great day and got to have cake and ice cream!!  You can see there is still some redness and scabbing on his face.  But he has come so far from these days…  20170225_083718   I got another gift as well.  Gabe had been upset about getting disciplined by his dad.  He was really pouting but I went up and cuddled him anyways.  He said, “Mom, I like being around you because you are always really happy.”  That meant a lot to me because I have really struggled with depression but I don’t want it to affect my kids at all.  I’m so glad Gabe doesn’t see that.

 

Grunge and Depression

Don’t worry, this isn’t going to be a “there’s demons in the rock music” type of post… just some random reflections and what’s been rolling around in my head lately.

Just within this past week or so I have been coming to grips with the fact that I have depression.  I think I’ve always put my depression in the context of “overcoming” just because that’s how I’m wired.  I’m an INFJ and part of that I am always aggressively looking for ways to improve myself, including my mental health.

“Feeling sad?  Feeling down?  Nothing a good workout and chocolate protein shake can’t fix!!”

Recent events have brought it more clearly into focus.  I have depression.  I’ve probably had it since I was 13.  I usually manage it well enough through healthy coping mechanisms (and let’s face it, sometimes unhealthy ones).  I’m a sensitive person, I think and feel very deeply.  I naturally tend towards melancholy.  Out of all 4 of my siblings and I, I think it is safe to say we all struggle with some degree of depression and anxiety every single day.

There is certainly a genetic component as well as a very real spiritual one.  I do struggle with depression however I do still hear from God, I do still feel a great deal of happiness in my life- because of my relationship with Him and all the gifts he has showered down onto my life.

I can honestly say I don’t think I would have survived my depression without God breaking through into my life.  “the people living in darkness have seen a great light; on those living in the land of the shadow of death a light has dawned.” Matthew 4:16

With the passing of Chris Cornell I can’t help but reflect on my past and the impact depression has had.  I was only a kid when the grunge movement was big but my older siblings were really into it.  When I got into my teenage years the angst and authenticity of the music really spoke to me.  My favorite band was Soundgarden…and then of course, Audioslave.

Chris Cornell was, like many artists, a sensitive soul that battled his own demons and dealt with depression.  We don’t know for sure if his death was a suicide, but it seems likely.  He likely fought the depression and the darkness the best he could, until he couldn’t.

I’ve gone through major crisis’ in my faith.  When I came to God I knew I had major issues, deep pain in my heart.  I knew I needed healing.  I knew I carried a shame around in my soul that tainted every part of my life.   I sought God with everything, I sought healing.  I prayed, I fasted, I wept…. for years.  Yet I still feel such angst in my soul.  I still wake up everyday and feel the need to prove my worth.  I still fight to keep the depression at bay.

I really don’t like offering up “untidy” blog posts.  I really like to post when I’m pumped up on a spiritual high with God and feel like I can offer inspiration.  Those times are true and genuine but they certainly don’t capture the whole story.

I feel like I want to be a little more real in my writing.  Because, well…there are no “successful Christian makeover!” stories, at least not in the sense that we get so healed and delivered that we live in a sort of spiritual reverie, immune to the flesh nature, with a perfect grin and perfect family until Kingdom come.

It just isn’t reality.

In being thrust into a caretaker care for my son, a lot of the self-medicating (or coping, tomato-tomato!) tactics I’ve used have been really messed with.  The things I use to prop myself up (don’t we all have them?) where suddenly taken or just not enough.  I’ve realized my motivation for serving God is actually very little when I am really hurting and my prayers seem to go nowhere.  “If we are unfaithful, he remains faithful, for he cannot deny who he is.” 2 Timothy 2:13

Just today I was feeling down about something when I heard God speak to my heart about how He loves me.  He loves the “hot mess” me.  I remembered a time, when I was in my early 20’s and seriously depressed.  I couldn’t love myself and couldn’t imagine God could either.  I stopped praying.  I remember sitting on the dusty carpet in my bedroom near tears when this song came on the radio… https://youtu.be/Ek4I6BeMQIs

I just knew that song, at that moment, was for Me- from God.  I bawled and bawled.  It was a real moment in my life where his light burst forth into the deep darkness I found myself lost in.

I struggle with wanting to wrap everything up into a neat little Christian bow but I really can’t.  As my 8 year old was asking me why God has allowed him to go through these years of suffering, there really aren’t any easy answers.

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Copper the dog looks sad for Gabe too~

I think in this life the pain is real.  The hurts are real.  Especially the hurt we all carry around in our hearts.  So much of life seems random, chaotic even- but for the moments that the light of God breaks in.  Somehow we survive and come out a little softer, a little stronger.

It’s ok to be hurting.  It’s ok to have questions.  As long as those pangs and hurts ultimately lead us to our Healer, into a deeper relationship with Him, as he slowly unravels the hurts and shines his light into our deep darkness.   And if we take a detour, He will come and rescue us when we are ready.

When Trauma Happens

This last Saturday my dog was viciously attacked by another dog.

We had been gone for a few hours and came home to find two labradors (one yellow, one black) running around in our backyard and pond behind our house.  They seemed friendly enough.  Our neighbor called police to come pick them up and I put up a post on our community facebook page with a picture of the dogs and our general location.

We put the black dog on our dogs leash so they wouldn’t run off.  The yellow one eventually did run off and was traipsing around the neighborhood.  At that point I let my dog out in our front yard so he could “go potty” after having been inside all day.  The black dog was leashed in our backyard.

The yellow dog came back and at first was just sniffing my dog.  I can’t remember the exact sequence but very quickly the yellow lab started attacking my dog and chasing him around the yard.  I ran after them yelling to no effect.  I ran around the house and found my dog cowering by my front door with the other dog attempting to block it from going back inside.  I screamed at the dog in my most authoritative voice to scare it off enough to get my dog safely inside.

I didn’t realize my dog was badly hurt until some 40 minutes later.  He had a pretty serious bite wound on his tummy.  I didn’t see it because he is a golden with very thick, long fur.  The wound was about 1 1/2 inches wide and definitely required immediate vet care.  Since it was Saturday I had to drive him 45 minutes away to the nearest emergency vet clinic.  He needed to be put under general anesthesia so they could flush out the wound and stitch him up.  20170514_084321

This was traumatic for me on two accounts.  My Copper is my “baby”.  He is the sweetest, most loving dog you can imagine.  He is my joyful companion on many adventures.  When I need a hug he is always happy to oblige.  He is just a great dog and wouldn’t hurt a fly.  The thing that really wrecked me is that I was the one who (unwittingly) put him in danger.  If I hadn’t let him out this wouldn’t have happened.

I felt very awful and very responsible for the whole thing.

But I slowly gained some perspective.  I had no way of knowing the dog would react that way.  It was a lab!  It showed no signs of aggressiveness up until the attack.

It was awful, it happened.  But I can’t keep beating myself up over it.  My culpability amounted to my being a bit naïve and impulsive.

I’ve thought quite a bit about what I learned from watching the Dog Whisperer; dogs live in the moment.  People often live in the past and get stuck after traumatic events but dogs don’t.  They heal and move on with the right care.

That’s one thing I love about dogs.  They live in the moment.  If the owner moves on, they will too.

I love my dog and he brings a lot of joy to my life.  We are going to move on from this together and leave it in the past.  (well, after we get the vet bill taken care of by the other dog owner!)  It was a painful learning experience.  I’m not going to go overboard but I will definitely be far more cautious in the future.  I did a lot of reading on the subject and dog attacks on other dogs are common enough that you need to have some sort of game plan just in case. 

Carrying a can of mace may seem extreme but if you ever need it, you’ll be thankful to have it!!  A heavy duty walking stick can also work to break up an attack, or defend yourself if you ever get attacked.  I also read that you can pick an attacking dog up by the back legs (like a wheelbarrow) and pull it back, or grab it by the tail, but those moves would obviously involve some risk and require some physical strength.

I assumed the dogs were friendly because of the reputation of the breed.  But any dog of any breed can become suddenly aggressive.  It’s illegal to let your dog wander but dogs do escape and/or have irresponsible owners.  In that scenario, it is better safe than sorry.  Don’t approach a dog running loose, especially if there is more than one dog.  Dogs are more aggressive when they have that “pack” mentality.

Copper is going to heal up and be ok.  He’s been a bit fearful out in the yard but I’m confident that will subside and he’ll go back to his happy-go-lucky self soon enough.  One bad incident isn’t going to sideline us or make us bitter or fearful.

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Copper and my son, Michael

Spring, Sadness, Hope

I watched this video yesterday and broke down crying.  It pulled on my heart strings because I know exactly how each of the moms feel.  You struggle privately and have to put on a brave face for your kiddo.

Going through TSW is incredibly isolating because it isn’t a well known condition.  People have never heard of it.  Whenever I post updates or pictures I always get people saying things like, “OMG!  That’s an allergic reaction!”  or “coconut oil took care of my small patch of eczema!”  Insert head-slap here.

Also not particularly helpful is reaching out to the mother of a sick child….trying to sell them something as a MLM distributer.  We’ve tried every lotion on the planet at this point, I’m sure yours isn’t going to be the magic bullet that will end his suffering.  But….um thanks for offering??

Or posting progress pictures.  I always point out that’s he still has a long way to go.  But still people “be like” Hallelujah!  He’s finally healed!!  Um…slow down.  He’s still very much suffering and going through this.  I just like to post pictures when there is any progress to encourage myself and let everyone else know how he is doing.

Speaking of that, he has come a long way.  When you deal with something like this it is easy to fall into hopelessness because it just goes on….and on.  He’ll make major progress and then flare again.  Our hopes will rise, then get squelched.  But I know every single day we weather brings us one day closer to him being healed.

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This was about 1 1/2 months ago.  Yep, RSS is that horrific.
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That’s him now.  Not healed but making progress!

At the moment he is flaring on his face pretty badly.  He doesn’t want to leave the house, because he is so embarrassed.  He’s lost weight off of his already very skinny little body.  In spite of seemingly eating 24/7 he is very thin and his clothes hang off of him.

I also believe he is healing on the inside too.  His organs became steroid dependent as well.  Every morning he has a hard time getting going.  We need to carry him out of bed, get him breakfast, and then bathe him.  I still need to wash all his bedding every single day.  Because every night it gets bloody and crusty and covered in his dead skin.

We are hitting this thing from every possible angle.  Probiotics, vitamins, homeopathy, bone broth, garlic, sea salt….just every thing we can do to help him.

That’s been our focus and it’s really brought us all together.  I feel closer to my husband than ever.  I thank God for our solid marriage.  He has been my partner in this 100% and is so quick to sacrifice for his family.

Most days we are doing pretty good considering.  When you’re going through a long term crisis everything else get’s backburnered.  We barely celebrated Easter.  We haven’t really been able to go to church in ages because it takes so long to get Gabe going in the morning.  I was ok with that until I drove past a cross with ribbons billowing in the wind the Monday after Easter.  I felt an unexpected tidal wave of sadness at not being able to celebrate my favorite holiday the way I would have liked.  It threw me into a bit of a depression for the rest of the week.

But I know that next year will be totally different.  Next year we will go all out for Easter.  Next year we will properly celebrate our Anniversary.

We know that our faith has carried us through this and also all the many prayers offered up for Gabe.  Thank you everyone for your continued support and prayers!!