Topical Steroid Withdrawal (nightmare)

If I could cry a thousand tears for everything Gabe has gone through, it wouldn’t be enough.

It’s been such a tough week.  Shiloh has had the flu and I came down with it a couple nights ago.  I am sick and miserable and trying to deal with what can only be described as topical steroid withdrawal hell with Gabe.

We know now that Gabe has been going through withdrawals for months.  He’s had topical steroids for years.  We’ve always used as sparingly as possible.  But last Fall he went through a health crisis.  He had pneumonia we couldn’t get rid of, even after two rounds of antibiotics.  So his primary doctor prescribed an oral steroid, prednisone.

Now we can look back and trace this red rash and bumps to that time.  The rash would come and go and we had no idea why.  I stopped using laundry detergent in his clothes.  We took him off gluten.

We took him up for prayer at church last Sunday, which happened to coincide with Tim applying some powerful steroids to some trouble area’s on his skin.  The red rash seemingly miraculously disappeared.  We thought it was the start of a healing.

At the point we decided to quit steroids in an act of faith, as Gabe did look a lot better.  Within a couple days the red rash was coming back.  Tim just happened to find some information on TSW (topical steroid withdrawal) Friday night.  He was certain that he found the answer for the rash.  I heartily agreed.

The next day, Saturday, after a week off of steroids; Gabe exploded in a red rash.  His skin started oozing, he had chills, he was exhausted…he was going through a violent withdrawal process.  One that was only just winding up.

Today he looked even worse.  His entire genital area was very swollen and painful (which we realized was due to swollen lymph nodes, another symptom).  He has literally every single symptom of Red Skin Syndrome, otherwise known as Topical Steroid Withdrawal.

We made an emergency appointment to get him seen at the U of M Masonic Children’s hospital in Minneapolis to be seen by a pediatric dermatologist.  I wasn’t very hopeful that they would be willing to help, or even acknowledge, his condition.  Tim wanted to give it a try though, and see if there was anything they could do to help.

I was right.  The doctor, a very young woman named Christina Boull, strode into the room with an air of arrogance.  She denied that Gabe had RSS.  She looked at us accusingly and said that he was having a severe eczema flare and needed to be hospitalized and be administered steroids immediately.  We tried to explain how he his eczema had been fine, very much under control (and still is) just a week prior.  And that since we had stopped putting steroids on him he had exhibited symptoms of extreme withdrawal- the chills, swollen lymph nodes, exhaustion and the bright red, oozing rash.

She was adamant that the red rash was simply poorly controlled eczema.  That she could get it under control with more steroids.

I wish we has gone in there with more information.  Like this article, begrudgingly acknowledging the existence of this very real condition https://nationaleczema.org/education-announcement-topical-corticosteroids-eczema/ or this article by a dermatologist who has helped thousands of patients through TSW http://dermatologytimes.modernmedicine.com/dermatology-times/news/modernmedicine/modern-medicine-news/topical-corticosteroid-addiction-may-be-b?page=full

We are so angry because we have been treating this withdrawal for months, not knowing that we were worsening the addiction.  We are angry because though TSW has been well documented, we were never warned.  All our doctor told us was that the steroids could cause skin thinning (which would actually be helpful in his case, according to her).  We were completely unaware of the horrible withdrawals that would leave Gabe in far worse condition than any actual eczema he dealt with.

We are angry because we feel like we are on our own dealing with this.  The doctors that helped get him into this mess are now pointing the finger at us.

We are angry because this is just the beginning.  Coming off of steroids takes months or even years to overcome.

We are angry cause our boy is in so much pain.

 

At this point, we are committed to helping him detox as safely as possible.  We will find doctors willing to work with that objective.  We will possibly have to pull him out of school, as this process can take months.  We will keep him as comfortable as possible while he heals.  We will pray that God would expedite the healing process.

The Next Step

It’s been a really crazy week.

Last Sunday we brought Gabe up for prayer in church.  When I got home from work that night Tim (my husband) was in shock that Gabe looked dramatically better. 20170213_151128 20170213_195956

Gabe has had eczema since he was three, so for 5 years we have been dealing with this.  We have been using topical steroids for years to manage his eczema, because we felt we had no other options.  While all along, his eczema continued to spread and get worse.

So After church when Gabe showed dramatic signs of healing we stopped using all his steroid creams.

In the next couple days the redness came back.  We were really discouraged, like; did God heal him or not?  What’s going on?

Friday night Tim just happened to stumble on some information about topical steroid withdrawal, or red skin syndrome (RSS) on this website http://itsan.org/ .

It was a God send because the next day (yesterday) Gabe’s skin exploded in an angry red, inflamed rash.  By nightfall his skin was oozing and he had chills. 20170218_111443

29562958This second set of pictures were taken just 4 days after the first ones.

This is not eczema.  This is topical steroid withdrawal, or red skin syndrome.  Gabe has a difficult recovery process ahead of him.  We do have a light at the end of the tunnel though.  This is shockingly common.  Many others have gone through this.

We want to share our story to raise awareness.  We anticipate that after going through withdrawals, Gabe will have a normal and happy life.

I will update as we see progress.

Thanks everyone for you prayers and concern.

Dealing With Holiday Weight Gain

I never know how to open (or close) a blog.  It always feels awkward.

Ok, so here goes- My name is Sierra and I am a recovering anorexic.  Bam.

I’ve been in recovery for a long time.  I’ve had babies.  Weight has been gained.  Weight has been lost.  Stretch marks have happened.  So has a lot of hard work and personal growth.

I was at a sweet spot, weight wise, for me.  Somewhere I can be comfortably, at which my body is happy and the crazy is generally kept at bay.

Well, I’ve been enjoying lots of good food and kicking back breve iced mochas at work and a couple extra pounds have appeared as extra insulation on my tummy and hinny.  I stepped on the scale and faced the music and indeed, it wasn’t bloat or my imagination.  Sadface.

Instead of going into pyscho- anorexic mode and beating myself up I’m handling it much differently.  I stared at my body in the mirror and saw all the things I do like.  I (man this sounds so cheesy, but go there with me) affirmed my body.  I bit bigger than I want to be, but it’s still my body and I love it.

However, I don’t want those couple extra pounds to gain long term squatter status so I do have a loose plan in place.  I’m going to hit my strength training workouts hard.  I’m going to cut back on sugar and empty carbs and focus my diet on high quality protein and fats.

I’m not going berserk or punishing my body.  I’m approaching it from the standpoint of treating my body as a temple to be treated with care and respect.

The scale will go back to normal and I’m not going to stress about it.

For many of us who have struggled with eating disorders- a lot of it stems from having an intense (obsessive) personality with a heavy dose of perfectionism.  I realize now that this can be a good thing.  I am probably always going to be obsessing about something.  I’m probably always going to have some discontent in my life, striving to be better.

The times in my life that I have been the happiest have been the times I’ve focused all that obsessiveness on the only one worthy of all my devotion- Jesus.  So while I strive to do well by my body, my main focus is keeping the focus firmly where it belongs.

 

Long Road to Health

I guess I should specify that I am not a medical professional, just someone who has spent countless hours looking for answers to my own health problems.  I waded through a lot of scams and wackiness and found helpful tidbits here and there until I pieced them together into a more complete picture.  I have tried a gazillion different supplements.  I am basically a guinea pig. 🙂

I wish I had found very clear answers early on, without a sales pitch.  I also realize that everybody is different but basic health advice applies to everyone.

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Me at 22 (on the right)

 

 

I personally have a strong family history of auto-immune disease.  My paternal grandma died of cancer and lupus.  Many of my aunts and uncles from that side have auto-immune issues.  My sister has celiac’s disease and lupus.

When I started feeling awful in my early 20’s I had no idea why.  With a stressful pregnancy at 22 I believe my celiacs got into full swing.  But it started before that.  As a young child I had recurrent ear infections and was on dose after dose of antibiotics.  Antibiotics, especially when given heavily to a young child, greatly damage that gut bacteria which in turn affects all areas of health and development.  I remember getting a lot of stomach aches.  I was rail thin.  I had a major sweet tooth (candida, anyone?) and started dealing with some anxiety and depression early on.

So it took many years of searching to find out why I felt so awful all the time.  I thought I might have chronic fatigue syndrome because I felt bone-crushing fatigue almost every day.  On top of that I had insomnia.

Let me preface to say that all foods are inflammatory to some degree.  Even breathing causes aging through oxidation!  But some foods are more inflammatory than others.  If you have a weakened gut through family history, stress, antibiotics, etc. you are more likely to develop digestion problems like leaky gut or full blown celiacs.  If you are eating inflammatory foods with a weakened gut you are going to crash and burn, health wise.

With a compromised gut wall; certain proteins from food can leach through the gut lining and cause auto-immune problems when your immune system decides that say, gluten, is a threat to be attacked.  Then your own immune system is attacking your own gut.  Obviously problematic!

This was going on with me for years.  I eventually realized that it wasn’t just gluten but also soy lecithin, carrageenan, preservatives, and nitrates that were causing my gut inflammation and misery.  All grains also tend to be inflammatory to people who already have damaged guts.  So out with the gluten free pasta and bread.  Gut inflammation caused my nutritional deficiencies and exhaustion.  I felt like an old lady and much of my hair fell out.

I found out through some blood testing that I was anemic and deficient in vitamin D.  I wasn’t making vitamin D through sunlight.  It must be a lupus thing- a lot of sunlight just caused more inflammation and exhaustion.

There are a lot of good blogs out there with good info but the lifestyle they advocate is so extreme it can be overwhelming.  Like- I need to live on organic free-range bone broth and kale?  Just shoot me now!

I don’t think most people need such an extreme lifestyle.  Just some tweaks here and there.  I am on a pretty restricted diet cause I have to or I will feel awful.  But I am seeing big improvements in my gut and general health and hopefully will be able to successfully incorporate more foods.

Supplements that really helped me are turmeric (great anti-inflammatory), probiotics, iron, and of course vitamin D.  I was taking 2,000 IU’s a day and that wasn’t making a dent in my deficiency.  I’ve upped it to 10,000 IU’s and that has made a big difference.

People with auto-immune issues tend to be Vitamin D deficient.  Whether the deficiency causes the problem or the problem drains the body’s resources, I don’t know.  But in either cases getting those levels up is crucial.

Symptoms are clues to an underlying problem.  I tried to treat my hair loss for years with topical stuff with limited success.  Addressing my gut health and vitamin deficiencies made my hair finally stop falling out.

Limiting caffeine is also helpful.  It is a vicious cycle when you are so exhausted you become more and more caffeine dependent and that caffeine disrupts your sleep at night and you become more tired and caffeine dependent.  At one point I was drinking up to five cups of coffee a day.  Not healthy!  Now I try to stick to two cups of half-caff coffee in the morning.  I sleep so much better.  Too much caffeine also messes up your hormones.  My cycle gets messed up when I have too much caffeine.  (Hello psycho P.M.S!)

Most of us are deficient in magnesium too.  I take magnesium citrate every night before bed for good sleep.

I also most shop the parameter of the grocery store- fresh produce, meat and dairy.  I make most things from scratch to avoid icky ingredients.  It takes awhile to adapt but every thing tastes so much better.  You get used to good homemade food and everything else is subpar.  I do make bone broth and make some crazy good soups that are also super healthy.  I stock up on staples like kerrygold butter, organic cream, leafy greens, regular old chicken breasts, and of course coconut oil at Costco.  We probably spend less on groceries than an average family of five.

I don’t always buy organic because it can be ridiculously expensive.  But I do when I find deals or comparable pricing.  We usually don’t eat canned food either because it is super high in BPA and is not as nutritious.  Plus, canned food just tastes icky.

Also, exercising is very important too.  Especially strength training for bone health.  My ankles used to crack whenever I tried to run and feel like they were giving out on me.  Yikes!  I’ve been building up my strength with weights and plyometrics and I feel strong and healthy, and no more cracking ankles.  Heavy impacts and weight loads don’t just affect your muscles but your bones as well.  You can build up bone strength, no matter your age.  Weight lifting is also great for metabolism and even brain health!

I really feel better than I have in years.  I hope that others who are in the same hard place with their health that I was find hope in that you can feel better, that there is hope.

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Me Now (29)

God Bless, Sierra

 

 

 

 

 

 

 

 

Sailing through Flu Season

I have three kids.  Two bring home every germ from their elementary school and the other one is regularly exposed to many other little kids in the daycare at my gym.  Avoiding flu germs isn’t really an option for us.  A couple winters ago I was literally sick off and on like all winter.  It was awful.  Sick-boy

I’ve learned a few tricks since then and I have not been sick once this year (knock on wood) and only my youngest has gotten a touch of the flu.

The biggest ‘trick’ is Vitamin D.  It is gaining popularity and with good reason.  Our bodies manufacture it from sunlight.  But if you live in the frozen dreary north like me (Minnesota, represent) you get basically zero for months on end.  Vit. D is crucial for health in general but if you don’t have enough you will have no immune system.  My levels were abysmally low at my last physical so I take 10,000 iu a day.  I give my kids vitamin D gummies every morning.

My next trick up my sleeve is probiotics.  We take them every day.  They even have tasty, chewable ones now that kids love.  They keep your digestive system happy and give a major boost to your immune system as well.

We also avoid antibacterial anything.  Antibacterial soap leads to super germs…and decreased immunity to them.  Yikes, no thanks.  Hygiene is good but exposure to germs isn’t necessarily a bad thing.  Many experts now site our overly sanitary lives as reasons behind the rise in asthma and allergies.  Our bodies aren’t being exposed to enough germs so they become hyper-active towards them.  A better bet is building up our immune system to be able to handle whatever is thrown at it.

I’m not diving into the controversy that surrounds the flu shot but suffice to say we wouldn’t touch it with a ten foot pole. 🙂

When my kids do still catch some junk I have three other tricks that really help.

For that dry cough that keeps everyone up a night- a spoonful of raw honey is just as helpful as cough syrup.  Plus, you won’t have to force them to take it.

Running my essential oil diffusers with certain oils works almost like magic to suppress coughs so kids (and the parents!) can get a good night sleep.  Oils I have found to be the most helpful are; lavender, frankincense and cedarwood.  They also smell amazing.  If you don’t have a diffuser you can put a few drops of lavender (pretty easily obtained at even a regular grocery store) in a humidifier.  Shut their door at bedtime so they are breathing in moist air with healing properties all night.    lavender

When they wake up with the ‘sick’ look- glazed over eyes, snotty noses, etc.  I will put them in a hot bath with Epsom salts (about two cups) and the essential oils I mentioned (five drops each).  It also does wonders.

I also will rub lavender and frankincense or myrrh (diluted with oil or lotion) onto their chests and massage their lymph nodes to promote drainage and calm an irritated respiratory system.

If you’re just getting started with essential oils just be cautious and always dilute when applying topically.  They are very powerful and effective so kids don’t need much.  For a massage you only need one drop of each oil you are using, diluted in at least a tablespoon of lotion or oil.  You also don’t have to spend a fortune to get good oils.  Aura cacia is widely available, inexpensive and IMO just as good as any other brand.

Also; basic things like eating well, sleeping enough, exercising and managing stress are also biggies.

Here’s to your healthiest flu season yet!

 

 

 

 

Waiting

So I did go in on Tuesday to see where my thyroid was at and to test for the presence of anti-nuclear anti-bodies (which indicates the potential presence of an auto-immune disease).  I had my first strange experience of having a doctor that is (probably!) younger than me.  I am 29 but she looked about 25!

It is also strange that now we can see test results online with only google to help us figure out what it means.  My ANA test was positive.  I haven’t heard back from the Doctor though.  So I am in the limbo period.  I’ll probably need more tests to figure out exactly what is up.  0e1407027_waiting-series-graphic

Today I am feeling just exhausted.  I am pretty bummed because this has affected my quality of life so much for most of my 20’s.  Summing up much of the last decade in my life I would use one word- tired.  And with three kids I can’t exactly nap or sleep in.

My little guy Gabe is going through the ringer with his eczema.  He’s been having trouble sleeping every night and keeping us up too.  I let him stay home on Tuesday because he had been up much of the night and scratched himself raw.

So we are at a real low point.  It’s been pretty brutal.  It kills us to see him suffering day after day.  He is going to see a specialist next week and hopefully we’ll get some answers/help with this.

In times like this I am grateful though for my husband.  He is such a good dad and a loving partner.  Having that support through tough times is everything.

We are trying to see glimmers of hope through this.  It’s been tough though.  Not gonna lie.  We get really frustrated that God hasn’t yet answered our prayers for Gabe.  We’ve started wrapping him up in seran-wrap and packing tape at night so he doesn’t scratch all his skin off at night!  Almost funny, like a little plastic wrap mummy.

I don’t know for sure if I have lupus yet.  Obviously, there is something auto-immune going on with me- causing the fatigue and hair loss.  Hopefully I’ll have more answers soon.

So it is what it is.  We could definitely use prayers, especially for Gabe.

Good News!

I know my posts have been glum and sad lately but today I am very hopeful.

We noticed that Gabe’s eczema has gotten much worse since we moved to a new area a little over a year ago.  Despite using all sorts of creams, ointments, and steroids.  I think a huge contributer is the water here.  You can smell the chlorine in it.  For months every time I get out of the shower my skin is itchy all over with red rashes on my neck, face and shoulders.

We have Gabe soak in the water every night as part of his treatment.  It is really frustrating to think that all along the water was making his situation worse.

So we splurged on a whole house water filtration system.  I am really hopeful that it will help his skin immensely.  Chlorine is nasty stuff.  It is toxic even in small amounts.  WIth every shower it actually absorbs through your skin and you breathe it in, adding to a daily toxic load.  Children like Gabe just can’t handle it.

Another option is to add ascorbic acid (vitamin C) to children’s bath water.  A small amount (like a tsp.) will help neutralize the chlorine.

There are also special shower heads that filter out chlorine that are supposed to work really well too.