Topical Steroid Withdrawal {ONE YEAR in!}

I seriously can't believe that I'm sitting here blogging about Noelle being off topical steroids for ONE WHOLE YEAR!

I've noticed a trend in our Topical Steroid Withdrawal online community of others tracking their months into TSW like we track our children's age...23 months in, 47 months in, 94 months in, etc.

Well, I'm already losing track of how many months Noelle has been off steroids and I am taking that as a GOOD SIGN!

I'm pretty sure we hit the one year mark in October, and my last update was a month before that and I was able to share how WELL Noelle's skin was looking!  She had a really amazing several weeks of healing....and then another flare ;)

So, many people would just be utterly discouraged with another flare up after such improvement, but I really wasn't.  Noelle has come SO FAR with her healing and I knew from the experience of others, that she'd have another flare - that TSW wouldn't just disappear, never to return that quickly!

So very shortly after my last post, she started flaring, and it lasted at least a good month-maybe a little more.  Right now, she's much better and everything is trying to heal...which, by the way, often times makes it more ITCHY!

It's frustrating, but just as our sores or wounds that heal start to itch, so does hers.

But this flare really wasn't nearly as bothersome as her others, so I'm very encouraged that even though her journey through this isn't OVER yet, she's most definitely better and on her way!

I've also noticed that her asthma has not been acting up hardly at all this past couple months...not sure if that's related or not.

ANYWAY, here's how her skin is!

Her face has been pretty irritated lately. It's been red and she's itched a couple spots until they've become raw.  If she's around an irritant, like dog hair, we find her face seems to react pretty strongly to it.

Her neck was also very red, bumpy and irritated through this flare, but it's drying up now!  Drying for us, means healing - much better than angry, red, bumpy skin!

Noelle's arms and legs were the worst part of this flare.  Right now her arms look almost normal...except for when she scratched her wrist this morning :(

Her tummy got a little red, but for the most part has remained clear for quite a while now.

Her back stays pretty clear as well, except she gets a lot of irritation where her pull-ups hit her.  She only wears them at night, and I really feel like TSW affects her ability to stay dry at night.  I say this because she was doing GREAT staying dry and then all the sudden she couldn't anymore.  She's actually doing much better, but pull-ups are safer than urine stinging her skin if she has an accident.

So her legs were pretty bad, though not NEARLY as bad as they were before, like in this post.  We didn't have much raw skin, just bumps, tough skin, and it was pretty itchy.  Right now, it is more on the dry side which tells me they're healing too!

Her feet used to be the worst part of her body, like in the post I linked to above.  They were just awful...I think I used to say they looked like they were chewed by piranhas.  And I'm so thankful to say that they really don't seem to bother her at all anymore.  We found that they're still sensitive - like she can't wear certain flip flops without getting irritation between her toes.  But other than that, they're great!

As far as her sleep goes, thankfully it continues to IMPROVE!!!  She wakes up once or twice and usually goes right back to sleep if we just stroke her for a minute.  When I got annoyed at that the other night, I just reflected on what life was like a few months ago...very little sleep like I talked about here.  So thankful that The Lord has brought her this far!!!

We have stopped giving her the homeopathic supplements from her doctor...I'm wanting to learn more about how those are made and what they really do...especially since she's now still improving without them!

The supplements she does take:

• She still takes CALM magnesium powder at least once a day, sometimes twice.
• She chews 1/2 pill of melatonin at bedtime as well.
• We continue to give her probiotics at night and enzymes with her meals (when I remember).
• She also drinks Cod Liver oil with her NingXia Red (drink from Young Living) and the Kombucha that I brew at home.
• Also, she still is not eating dairy, gluten, corn, oats, and we do our best to stay away from other processed foods (high fructose corn syrup, artificial sweeteners, etc)

The best moisturizer for her is still our lotion bars (recipe here).  It really seems to soothe and help her, although we try to avoid doing it right before bed...for some reason that makes her more itchy?

I think that's enough for now...if you're a parent with a child going through TSW, I am so sorry.  This has been such a hard year for our entire family.  I pray that you will find what works best for your child and that perhaps our experience will help in some way.  I couldn't stop reading about other kids in Noelle's situation when we started this, and that's why I decided to blog about it!  I hope that you find what soothes and assists them getting through this awful experience!

If you are wondering if you have TSW, check out ITSAN.org - it's a wonderful resource dedicated to getting the word out concerning this condition!

And for those of you who have prayed for Noelle's healing and our family's sanity during this time, we thank you!  If you're close to our family, you know how much Noelle has improved and started becoming more and more like herself :)

Topical Steroid Withdrawal {11 Months In}

So life has brought many changes these past couple months! It has made life busier and more gratifying!  But definitely less time to blog :)

My last TSW post was when Noelle was 9 months into this and we were pretty discouraged.  I really expected her to be in a better state than she was and she was really really itchy!  

Well I'm so glad to report that the last 2 months have brought Noelle MUCH improvement!  And consistent improvement which we are so grateful to Our Lord for!!!

Soon after my last post, Noelle saw her doctor again and he recommended we start her on magnesium twice a day.  

We soon also started moisturizing again, as we hadn't moisturized in months!  Before, creams would irritate Noelle's skin and exacerbate the condition.  

Well, NOW  her skin absorbs moisture and we have seen it respond pretty quickly to it!

I don't know if it was just time, the creams we use, the magnesium or if it was a combination all the above, but her skin quickly started to change.

For several weeks now I have not been able to qualify any part of her as "flaring."  She has some trouble spots, but they are isolated!

PRAISE THE LORD!

Her arms had a severe setback last month after her skin looked perfect for about a week.  Twice in a few days, she managed to get her gloves off and just rip apart her arms and hands.

She's never done anything like it and it was an extremely frustrating week for me.  For at least a week I had to keep zinc cream on her arms and wet wraps on top (which she hates) to allow them to heal.

 
Thankfully they did heal eventually and look better now, with just some scratches left that are more recent.

I am using two different creams right now.  

One is from the lotion bar recipe that I shared a while back and this one has lemongrass in it.

The other is a cream I whipped together (literally) with:

• coconut oil
• shea butter
• a little grapeseed oil
• beeswax
• zinc oxide powder

• Young Living EO's: lemongrass, frankincense, roman chamomile, and lavender

We also continue to use Young Living's Tender Tush.

I apply the lotion bar when her skin is just dry and we use the zinc cream when her skin is more inflamed, red, or oozy.  The zinc helps to dry it up but not as much as the diaper cream we were using before as this one has other moisturizers in it!

They both seem to be working great!

So here's how she looks right now:

Hair:

Although it doesn't hurt or itch, thinning hair is a symptom of TSW.  The top of her hair has thinned significantly and it is still falling out.

I'm hoping this stops before her hairline is moved back.  I've had to change how I style it!  

Her head has become super sensitive though, I've started braiding her hair and keeping it in braids so I don't have to brush knots out - that equals a screaming match!

Feet:

Feetsies after zinc cream

Noelle's feet are looking pretty good!  Some redness and a few bumps, especially between the toes her flip flops go in (yes, she's wearing sandals!!).  But they look pretty good overall.

Legs:

 her leg after zinc cream

 Her legs have improved greatly, though prove to be something that we constantly have to address.   We've found that the thick "alligator skin" has significantly reduced and softened with moisturizing.  She has several red dots, but no real oozing or bleeding.  They do itch, but not at all like they used to!!!

Top of her thigh after zinc cream

The top of her thighs had some really rough, thickened skin from itching, but moisturizing has softened that as well and they're looking great aside from the little spots you can see in the picture!

Arms:

Noelle's arms have greatly improved, but she still has scrapes from her most recent scratching.  Not deep wounds like last time though!!

Tummy and Back:

It's beautiful!!!

Praise The Lord, her back and tummy are CLEAR!!!!  And they have been for quite a while now!

She'll get an occasional patch that we apply cream to, but that's it!  

What a huge milestone this is to us!!!

completely clear!!

If you look in previous TSW posts, you'll notice that for the longest time, Noelle's back was NEVER soft.  It always felt like alligator skin!

Face and Neck:

Haha, sweetie pie

Her face can be fickle.  It changes quickly from red and a little rough, to smooth and soft in hours!  We see this as a really good sign that we won't have to worry about her face very soon!

Her neck is CLEAR as well!  

She will rub right under her chin occasionally and that will get irritated, but it never lasts long :)


If you have been following Noelle's 11 months of TSW, it will be clear to you that this is by far the best condition that she has been in since October 2013!!!

Her sleep could use some help, but that has improved as well.  We usually go in to stroke and comfort her to sleep 1-3 times each night.  But we rarely have to sleep with her anymore to get her to sleep! 

We even took her to a 3 day conference with us a few weeks ago!

The Lord has been gracious and we are so thankful to be closer to "the end" of TSW for Noelle.  Only God knows when that will be, but we DO know that He'll see us through until then!

Thank you for praying for Noelle and rejoicing with us that she is getting better!

See you at the "one year" mark!! 

 Disclaimer: I am not a doctor or medical professional.  I simply make decisions on how to care for and improve the health of my own family.  None of the statements on my blog have been evaluated by the FDA and any products mentioned are not intended to diagnose, treat, cure, or prevent any disease.
This post also contains affiliate links to the company which I have personally used and recommend.  If you purchase through these links, I will receive a commission, however the cost to you remains the same!

Topical Steroid Withdrawal {9 months in}

So we are now closer to being a whole year off of topical steroids!

Noelle has sure been through a lot these past 9 months...and so has the rest of the family as a result.

My last post regarding Noelle's skin was 2 months ago at her 7 month mark (read here).

At that point, we had finally seen some improvement!!!  In her 7th month, Noelle also went through a really bad week and a half of sleep...or the LACK thereof, but with some prescription medication and watching her foods more closely, she improved.

Well, it's hard to recap the last 2 months as she has seen so many different ups and downs.

She had a stomach virus several weeks ago and didn't eat for a few days....that made her skin look AMAZING!!!!  Clearer than it has EVER been with no redness at all.  However, it got red and itchy almost immediately after she started eating again.  

I did some research and with the help of some other TSW moms, found out that just the act of eating and how the body digests and processes food can heat up the body and cause itching to start again.

A few weeks later, her skin got another break....right before another flare :(

The roller coasters are hard because when we see improvement, we want to keep that momentum and just see her healed.  That hasn't happened yet, though and we are daily trying to figure out what helps and what hinders her healing.

A few weeks ago, Noelle took another bad turn with her sleep.  She is sometimes awake for 3-4 hours each night, with an occasional break of only being awake for 1-2 hours.  She will normally crash around 4a.m., but one day it wasn't until 5a.m.!  We usually will then let her sleep until she wakes up...sometimes after 10a.m.!

We think she might have built up a tolerance to Atarax, so we are taking a break from it and will only give it occasionally and see if those nights she does better.

She tends to sleep much better and more soundly if one of us is sleeping with her.
Having a rested 3 year old going through Topical Steroid Withdrawal is much better than an UNrested one!!


So Chris and I have been waking up sore because we're spending several hours of the night/morning in Noelle's bed, stroking her to sleep.

It's hard to understand WHY she goes through these rough patches (well...roughER than the rest).  We are being very careful with what she eats and doing our best to keep up on the supplements her doctor wants her on.

We just saw him again this week and he gave her another homeopathic remedy for allergies - food and environmental.  He also wants her to start taking Magnesium.  She has never been tested for it, but he said if there is a deficiency, the magnesium can really assist her skin in healing.
 
The itch is just really bad right now. 
It's kind of odd because her skin really doesn't look that bad!  My theory is that it itches more as it tries to heal???

Anyway, here is how her skin is doing right now.

I mentioned in my last post that her legs had just "cycled" for the first time and we were hoping to see quicker healing on her legs from then on.  We HAVE found that to be the case thankfully, but Noelle sets herself back when she gets a hold of her legs with no gloves on and scratches :(

 It doesn't happen often, but one time is all it takes.  She can make herself ooze and bleed in minutes if we aren't carefully watching.  She normally does this during naptime when I think she's sleeping.

 

So we have had some setbacks with her legs, and they are trying so hard to heal....and they would if Noelle would leave them alone.

Noelle's tummy and back are the same as they have been for quite a while.  They stay pretty clear until something irritates the skin.  Then they get red and bumpy, but usually clear up within a week.

Something really bothered her arms a couple weeks ago - I think it was dog dander/hair.  She scratched them like crazy one night when I put gloves on her instead of tights.  She took the gloves off :/

So we're trying to help her arms now as they are super itchy once she scratches them like that.  And it's taken a good couple weeks to get them back under control.

There are spots on her shoulders and upper arms that are thick and crusty right now.  But thankfully they don't itch too much.  So I assume they'll just clear up the more she leaves them alone.

Noelle has unfortunately really taken up the habit of "picking."  It's painful to watch, so I make sure to keep her gloves on 24/7 unless her hands are occupied.  But if she has the chance, she'll pick at her chin or cheek until it's raw...not because it's itchy, but because it's a new habit.  How nice ;)

Sweet Girl :)

Thankfully right now it's not bad as we've been diligent with the gloves.

She has a lot of redness and roughness on her entire face right now too.  Don't really know why...she's not itching it more than normal.

Her chest gets red occasionally but is not a big problem anymore. 

So after so much encouragement at her 7 month mark, I did expect Noelle to be doing kind of awesome by 9 months.  Sadly, she is not.  And to be honest, it's very hard right now.  She has at least a few episodes every day that consist of crying, whining, itching, begging us to hold her, and screaming at everything that moves with irrational passion.

We are really learning humility and unconditional love as the LAST thing I feel like doing to a cranky little tantrum-thrower is hold her.  But that's what she needs when she's like that and it calms her almost immediately.  I will confess that there are many times...probably daily that I truly forget she is like this because she is in pain and constantly itchy.  I convince myself that she is just being a bratty little 3 year old, and while there are plenty of times that is the case, I need to be more intuitive to see when she just needs comfort.

So PRAY for me!  This is tough and we are looking to the END of it!

I am, however still praising The Lord for what He HAS done so far.  And guys, if you haven't looked at this website, and aren't really familiar with TSW, please take a look.  It shows just how blessed Noelle IS to not have TSW as severe as most others do.

As hard as life is right now for our 3 year old, we are grateful that it isn't harder.

And we look forward to life being more normal for her in the future.  We see our chipper, happy, thoughtful, caring, and empathetic Noelle much more frequently than we used to.  But we anxiously await being able to put her to bed in comfy jammies without tights covering her arms and legs.

And we wait for the day when she doesn't look at her skin and compare the way it looks to the way other  peoples' skin looks.

It will come.



Disclaimer: I am not a doctor or medical professional.  I simply make decisions on how to care for and improve the health of my own family.  None of the statements on my blog have been evaluated by the FDA and any products mentioned are not intended to diagnose, treat, cure, or prevent any disease.

Topical Steroid Withdrawal {7 Months In!}

It's hard to believe that we've been going through TSW with Noelle for 7 whole months now.

A few months ago, it was hard to see ANY light at the end of the tunnel.

We felt like she would just be miserable forever.

Well, I'm so grateful to say that we've had some great improvements this month!

We've also had some extreme lows.

Early this month Noelle's sleep too an awful turn.  She has consistently been waking in the night for months now, but a few weeks ago she could. not. sleep.

And, therefore, neither could we.

It was so awful, we've never experienced anything like it before as parents.  Nothing has tested us like that long week or so.

She was so awfully itchy, angry, inconsolable, tired, yet restless.

There was a series of events that compounded her condition that included:

• Accidentally taking doses of Zyrtec instead of Benadryl (mom and dad's fault - we felt terrible, but thankfully she had nothing close to a serious overdose)
• An asthma attack (never had one or been diagnosed with asthma) due to allergies
• Petting a cat with her gloves on, which I think she's allergic to...And then keeping those gloves on...and itching her whole body with them all night.
• Wearing a brand new dress and gloves to church without washing them like we normally do
• Getting some type of virus that gave her a fever for 2 nights (only at night), swollen glands, and a red throat.

All the above happened in a matter of 4 days...at the same time that she wasn't sleeping.

And when I say she wasn't sleeping...I mean she slept maybe 2-4 hours at night before finally crashing at 5a.m. or so.

During that week I tried a few new things for her skin on the recommendation of other moms with kids going through Topical Steroid Withdrawal.

First, we tried dry wrapping.

After her bath, I covered her skin in the lotion bars that I make.  Then I covered her legs and arms in gauze and taped it in place.

We found that this really helped with her itching and protected her skin from those pesky itching fingers.

However, each time we removed the gauze, her skin looked worse.  It turned oozy when it had looked smooth before.  This confirmed for us that her skin just does much better WITHOUT moisturizers.  

We DID find, upon someone's recommendation, that zinc oxide DRIES UP her ooze!!!  Nothing has worked that quickly before!

So we do use organic diaper cream with zinc oxide in it when her skin "weeps" or "oozes."

So since the dry wrapping didn't work, we then tried WET wrapping.  

After a bath, or anytime she was real itchy, we'd just wrap her legs in cold wet cloths.  I used old cut up t-shirts.  She HATED being wrapped, but we could tell that it did sooth her skin when it was hot and itchy.  

However, wearing those wraps at night, and putting her dry pj's over, caused her to start wetting the bed again.  I think the wet feeling on her legs threw her off.

So we stopped using those at night, but we still will wrap her legs up if her skin is angry, hot and itchy.  She still hates being wrapped but it cools the skin and really soothes the itching!

However, for that week, we still couldn't find help for her sleep.
She was in a very bad place.  Chris and I struggled to keep our cool at night and many times we failed.

But praise The Lord, His mercies are new every morning and He always granted the strength to get through the next day!  (Our laundry sure piled up though!)

Noelle however was not herself even during the day.  The lack of sleep and the itching really got to her.

What was so confusing to me was that her skin really had turned a corner.  Her legs had been so horrible for a few months with no improvement.  We are seeing that how the skin LOOKS, does not always correlate to how her skin FEELS.

So after a few days of this, we were able to get her in to her holistic pediatrician.

He believed that all the variables listed above caused her skin to flare and her behavior to be so challenged.

He also reminded me that any virus will cause the skin to flare.  Her body is working so hard to heal her skin, but if her immune system has to work at fighting off some other virus, her skin gets put on the "back burner."

He really wants her to be sleeping better, so he prescribed Atarax.

Oh, how we are thankful for that!!!!

It took us a couple days to actually fill the prescription and we are so glad we did. 

The first dose gave us the first full night sleep in several days.

We have since discontinued the Benadryl as we don't really see it helping her.

Currently, Noelle is only taking the Atarax at night for sleep.

She still usually wakes at some point, but it much easier to console and get back to sleep than before.

As far as her skin goes, here is where we are at:

Her legs have been the worst part of her body for a couple months now.  But I've seen them fully "cycle" now.  I've mentioned it before, but it basically means that after looking so ravaged, bloody, scraped, and oozing, they need to dry up and completely flake off.

Her legs were just taking forever...they were stuck in an oozy, bloody, scraped and torn up state.  And then they finally dried up and flaked off!!!

Looks SO much better!!!

Praise the Lord!  

That may not sound like a praise to most...but to those who are going through TSW...you feel me :)

This is where she's been rubbing/itching

Now the skin on her legs is still super thin.  So if she itches them without her gloves on, she'll definitely break the skin.  But now that her legs have "cycled," they heal up much much quicker.

They'll look awful (like today) for a couple days, then dry up and flake off again!

The tops of her legs are looking more affected right now.  They went from red and inflamed last month to scabbing this month.  I'm hoping that means they will "cycle" soon as well....dry up and flake off!
 

The foot on the left is dry, the right one has Tender Tush applied

Her feet look the same as her legs, but still more red.  They seem to be in the same stage as her legs most of the time.

The rest of her body is pretty mild...compared to before.
 

Happy Girl!

Her face has cleared up nicely...just dry flaky patches around her chin that she keeps picking.

Her neck and shoulders are not as bad as last month.  They're still pretty itchy, but not real red...at least not today.

Her tummy has red bumps all over...hate the look of it, but it doesn't seem to be bothering her and I know that it'll clear up again soon.

Her back is flaking again.  It cycles at least once or twice each month.  Right now there's a bunch of tiny scabs that are drying up.  Not real bothersome to her right now either.
 

Left hand has Tender Tush, the other is dry

Noelle's arms continue to be mild.  When she itches, they'll quickly become red and the skin still breaks easily.  But will heal up pretty quick and overall they look really good!  

I'm so relieved to have some improvement.  Others are noticing as well...her skin's improvement AND her behavior's!!!

Her behavior almost always directly correlates with the severity of her skin.  She's also getting sleep now, so that always helps a 3 year old :)

We're thankful to have our Noelle back for most days.  

Her sleep still isn't perfect and she still usually wakes up, but we're also noticing better night sleep when she DOESN'T nap.  That girl loves her naps...and so does mama ;)

But if it means better night sleep, I'm willing to push through till bedtime with no nap!

I mentioned in my last post that Noelle had allergy testing done.  Her pediatrician (NOT the holistic one) kind of freaked out at the results and referred her to an allergist.

We saw him a couple weeks ago and he is really no concerned about any of the allergens except for the dairy and peanuts.  A few of the others he things she might be sensitive to, but those that gave such small results probably aren't true allergies.

He explained that because her IgE was so off the charts, it throws off the results.

A normal person's IgE is around 100...Noelle's overall was over 2,000!  So having her response to oats being 7 is probably not a big deal for Noelle....now if a normal person who has an overall IgE of 100 and their test results show the same, that would be a different story.

It made sense to me and I was relieved that she probably isn't truly allergic to absolutely everything!  However, people with eczema generally have higher IgE readings...and those going through TSW are even higher I think.

So we're still refraining from peanuts, she already wasn't having dairy, and we are still not giving her gluten or corn in an attempt to help her gut out.

So IF there's any TSW parents reading this, let me recap what is working for Noelle.  I've included some things not mentioned above.

• Cod Liver Oil each morning
• Just started Kefir - have to wait to see if it helps.
• Vitamin C and D
• Atarax at bedtime, and sometimes a second dose in the middle of the night
• RutaVaLa essential oil at bedtime for sleep
• Organic Aveeno diaper rash cream with zinc oxide for ooze 
• Young Living's Tender Tush for itchy, painful, or broken skin
• Cool wraps (no moisturizer) on legs and arms when hot and itchy
• Cotton tights on legs to protect the skin at night...considering covering her arms as well.  She will sometimes remove her gloves to scratch!  Ick!

So that's where we're at.

Praising the Lord for small victories, and the sanctification He has brought from the deep lows.

Looking forward to more improvement!!!

 

  Disclaimer: I am not a doctor or medical professional.  I simply make decisions on how to care for and improve the health of my own family.  None of the statements on my blog have been evaluated by the FDA and any products mentioned are not intended to diagnose, treat, cure, or prevent any disease.