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.

Praying for Congo

So, a lot has happened in the last month regarding us adoptive parents reaching out to our local officials concerning adoptions in DRC.

In this post, I detailed what we had done in just over a week's time.

• We have gotten a lot of attention all the way up to the Department of State.

• A congressional letter was sent out directly to the president and prime minister of DRC that had 171 signatures on it from senators and congressmen.

• The Department of State responded to our plea for an action plan while the DRC delegation was to be in the country, and they set up meetings for the Congolese officials to meet adopted children that were already home with their families.

That delegation trip was canceled last minute, and the Congolese never came.

• Now, our Secretary of State, John Kerry is making a trip to Congo!

The Congolese respect John Kerry and we are praying that the trip will be beneficial for all involved.

But we are receiving blow after blow.

One second we are encouraged, the next we're scared.

One minute we're excited, and the next we are discouraged yet again.

Well, there is a new update on the Dept. of State adoption site and you can read it here.

People are fleeing with their children.
Illegaly.

We all might have opinions as to why DRC hasn't lifted this ban on exit letters, but we have to understand that their claims are real.

People are breaking the law, smuggling children out of the country, and not respecting the laws of their children's home land.

Do I want our son home?  YES!

But we have to do this the right way in order to pave the way for the children behind us to come home swiftly and safely as well.

But here is another concern:

DRC is now concerned with the size of our families before adoption.

Their law DOES state that children shouldn't be adopted to families with more than 2 children already at home. 

HOWEVER, their court system is given discretion in this regard.  Judges have the authority to decide whether families can provide for their adopted children with more at home.

This WAS the case anyway, and we are now concerned that it will change.

No family can "hide" the fact that they have more than 2 children at home.  You have to have a current home study in order to get your judgement, and the home study lists the members of the family in detail.

The fact is, this issue has not been a problem before, we were assured that it shouldn't be a problem by more than one adoption facilitator...and now DRC is implying that it might be a problem now.

Please pray for this situation.

Reading things like this makes my mind drift to possibilities that are too difficult to imagine...it makes me think that we just might not ever bring Tobias home.

However, my husband responds to me with this text message:

"We will wait and see.  We have done our best.  He knows and will rescue as He sees fit.  And we will not quit.  I love you, you are a mommy who loves her children from afar."

I'm so thankful for such words of wisdom.

So it's true....we don't know if or when we WILL ever bring Tobi home.

But we won't quit trying to!

So continue to pray for us, for Tobias, for the other hundreds of children that are stuck and waiting for their parents to bring them home...not to mention the MILLIONS that don't even have parents yet.

And something to think about is the longer children wait in orphanages, the longer other children wait on the streets.  If our kids aren't leaving those orphanages to come home to us, then there is no room for the others that have no place to lay their head at night.

Also pray for John Kerry's trip to DRC.  We're praying that there will be mutual respect between their President and our Secretary of State and that a beneficial outcome with soon be communicated to us!

We in no way want to shed a negative light on Congo.  It is where our son was given life.  They clearly can back up their claims of wrongdoing on adoptive parents' part.  

However, I am praying that they will see the dire state the children are in because of the exit letter suspension.

With so much uncertainty, I will rest in this:

"I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.”

John 16:33

5-Day Nutritive Cleanse {RECAP}

So I finished my 5-Day Nutritive Cleanse two days ago and wanted to post a recap!

If you didn't read about the cleanse, you can check out my posts here:

Day 1
Day 2
Day 3
Day 4
Day 5

Some things to note.
Something that I forgot to mention in my posts was that the cleanse allows herbal tea!  You can drink caffeine free herbal tea and even sweeten it with Stevia!

So I did take advantage of that for a couple snacks.  I had Tazo's iced passion tea with stevia...it was so refreshing!

Another thing is that the cleanse suggest drinking water with each meal and snack.  And at one point I realized I wasn't drinking as much WITH my meals.  However, I also didn't share that I drink water ALL the time!  

That's mainly what I drink during the day, and last week was no exception.  So while I may not have an quite enough water during a specific time frame, I definitely got in the recommended amounts!

This is a gentle cleanse.  Some people freak out by the term "cleanse" and think they'll be in the bathroom all week!

This is NOT that kind of cleanse.  In fact, the pamphlet states that it is a gentle cleanse that should be utilized 4 times each year.

I would really like to do this again in the next few months!

Does it really taste good?
I can honestly say that I REALLY like the Balance Complete Shake!  I was so pleasantly surprised by the taste and texture!  No furry fiber like I get with many drinks that have high fiber content.  

I found that I liked mixing the powder with just water, or water and milk together, but I needed it to be ice cold, so I always added ice after mixing.

The easiest way I found was to use mason jars with lids to shake it up and then drink!

Weight Loss
So at the end of the five days, I lost a whopping 2 pounds.

Not very much, but more than I had lost by doing nothing!

I stated in my first post that I was not doing this for weight loss, but as a kick start to better eating that I hope WILL help me lose weight!

Did I binge?
The day after I was done with my cleanse (yesterday), I actually had another shake for breakfast.  I had some extra powder left, so I drank it!  I had no hunger before lunch either.

I was able to eat normal meal portions and reasonable healthy snacks as well.  I am very thankful to be satisfied with much smaller portions than before!

Did the cravings return already?
Nope!
 
Did I want some foods that I hadn't been able to eat before?  Yes.  

Did I crave them like mad?  No.

I am still not craving junk food, however if I see it, I'll probably want it.  That's just me!

I am determined to continue with this as I now have some momentum from that cleanse!  

Did I have a little gluten/dairy free brownie today?  Yes.  And I was satisfied to have one little one.

I know that's normal for lots of people...but not for me!

How do I feel?
I have to say, after eating kind of a late snack last night, I woke up feeling bloated.  I want to keep the eating to very little at night from now on...easier said than done!

I feel really good though, and trust me, I had no major gastrointestinal interruptions during the cleanse!  I can tell you that there were a couple days of a grumbly stomach and gas, and that it worked itself "out."  That's all I'm gonna say, but I think it was a good thing!

What now?
Well, I've started my petrochemical weight loss, which involves applying oils topically and ingesting them.

Once I get some kind of result I'll do a post about it.

I also mixed together my own version of Young Living's Slique Blend.  I have all the single oils that are in the blend, so I mixed them together in a ratio that was tasty and I'm putting it in my water!

I'm also trying to just eat healthy.  More fruits, veggies, proteins and less carbs and little to NO processed foods.  (ok, I still buy all natural organic boxed snacks)

I hope that my series has been helpful to some!  Let me know if you do Young Living's 5-Day Nutritive Cleanse and tell me how it goes!

Feel free to ask any questions!

 
Disclaimer: I am not a doctor or medical professional.  I simply make decisions on how to care for and improve the health of myself and 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.
 

Young Living 5-Day Nutritive Cleanse {Day 5}

I'm done!!!
I did it!

I've never done any type of cleanse before, and I'm so glad that I completed this one while following all the protocols...until 6:30pm!  I finished my cleanse a little early tonight, I'll explain below.


Ok, here's how my last day went! 

Day 5 recap

Breakfast:

• 2oz Ningxia Red
• Balance Complete Shake (Mixed with 7oz water, 1oz of almond milk)
• Digest & Cleanse capsule
• An extra 12oz of water

Snack:

• Not needed

Lunch:

• Same as breakfast

Snack:

• 2 Tbsp raw almonds 

Dinner:

• Same as breakfast

Snack:

• Mother in-law's salad

How I felt today:
First off, let me start by saying....
We SLEPT last night!!!!

Noelle's meds worked, praise The Lord, and we all got a full night's sleep!

Wow, did that feel good!

It set us up for a great day at our church's discernment conference!

That kept me pretty distracted (accept for when everyone was eating cookies during the breaks!) so I wasn't tempted much.

By the time we got home, it was 1:30 and I was STARVING for lunch!  My shake and NingXia just didn't cut it so I had my almonds soon after lunch.

I had the same gastrointestinal issues as yesterday (read here...I don't want to type those words again), but again, there was no discomfort.

I will be honest and say that I finished my cleanse voluntarily early....does that sound positive or negative?  

We were at my in-laws' for dinner and I had drank my shake already and I was just REALLY wanting her salad.  She makes great salads.

So I had a plate.

It was an all vegetable salad with an olive oil and vinegar dressing, so it was really healthy!

But I guess I just "called the game on account of salad."

Not sure if I should feel bad or not...but I don't!  haha, I'm just glad I made it through and I'm looking forward to making much healthier food choices without craving the unhealthy ones!


I'll recap how I feel about the entire cleanse tomorrow and update on how it feels to eat the same food as my family!

For any of you that have followed me, I thank you!  I'm hoping that this can be a resource for someone considering doing the 5-Day Nutritive Cleanse like I did! 



Disclaimer: I am not a doctor or medical professional.  I simply make decisions on how to care for and improve the health of myself and 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.

Young Living 5-Day Nutritive Cleanse {Day 4}

Only 1 more day left!!!  This is day 4 of my 5-Day Nutritive Cleanse.

If you haven't, please catch up by reading about Day1, Day2, and Day3! 

Day 4 recap

Breakfast:

• 2oz Ningxia Red
• Balance Complete Shake (This time I used mostly almond milk and maybe a couple oz of water...yum!)
• Digest & Cleanse capsule
• An extra 12oz of water

Snack:

• Not needed

Lunch:

• Same as breakfast

Snack:

• Not needed!  Woohoo!

Dinner:

• Same as breakfast (shake was with only ice water)

Snack:

•  Plain rice cake and homemade almond butter

How I felt today:
So my husband and I are still living on little sleep.  My daughter is having a very very hard time at night.  We just got a new prescription to try and help her sleep, so we're praying it works tonight!  I mention this because.....well, I typed "how I felt today" at the top, and last night had a lot to do with how I felt today!  (If you aren't familiar with our current situation with Noelle, you can read about her condition here).

I'm honestly really thankful that I happened to be starting my cleanse the week Noelle has had such a hard time sleeping.  

Ya see, I am a comfort eater.  When I'm stressed, upset, sad, happy, nervous or excited...I eat!

However, I'd say that the portions are larger and the food choices tend to be poorer if I'm eating in order to comfort myself.

This is teaching me that after such hard nights, I don't need to find that sigh of relief in a donut or a brownie.  I NEED to find it in my Comforter and Savior!

I've also found much comfort in the family that has shown such love to us in reaching out to help in every way possible...and today that meant that my sister in law came over and cleaned my kitchen!  Like DETAILED my kitchen!  It was a surprise that caught me off guard and made me cry.  We are very blessed.

Ok, now on to the cleanse stuff!
I experienced more grumbling in my stomach today and some excess gas (cannot believe I just typed that out on my blog) even though I took the Digest & Cleanse capsules. None of it was uncomfortable, so I'm not bothered. I just figure things are moving around and on their way out :)

I was able to go about my morning and afternoon without hunger or cravings between meals!  That was great!  So I skipped the afternoon snack today.

However, the hard part was dinner.

The fam went to Round Table.

Oh. My. Goodness, did I want some PEPPERONI PIZZA!!!  Or ANY pizza for that matter!

Oh, it was so hard.  I haven't craved that stuff at ALL, but when it was in front of me, it was so difficult not to indulge in!

I honestly considered just a bite...but I didn't take one ;)

We came home, got the kids in bed, and I had a rice cake with my almond butter and it hit the SPOT!  

Felt very satisfied after eating it.  

The pamphlet actually has other snack suggestions for day 4, and I'm not sure if all snacks are interchangeable during the 5 days or if the instructions are specific for each day.  However, I didn't care.  If I couldn't have pizza, I was gonna have a rice cake!

I felt much better after that and now I'm ready to relax a little bit with my husband and we'll mentally/spiritually prepare ourselves for another possible night of being awake with Noelle!

Feel free to pray for us!

Oh yea...and tomorrow night, we're going to my in-laws' for dinner....I always love my mother in law's food.  That'll be another hard one!

I'll let ya know how it goes! 

Read Day 5 here! 


Disclaimer: I am not a doctor or medical professional.  I simply make decisions on how to care for and improve the health of myself and 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.

Young Living 5-Day Nutritive Cleanse {Day 3}

I'm on day 3!  I made it half-way!

I know I've already said it, but I'm really surprised at how easy this has been!  Maybe not easy, but definitely not torturous!

I know 5 days doesn't sound like a long time, but for me, I knew that 5 days would probably be my max for such a restrictive cleanse.

I have trouble staying super consistent with really restricting diets and I was honestly a little afraid that I'd end up cheating! 

But I'm glad I haven't.

Last night I made some almond butter.  I had never tried almond butter before so I was really hoping that I'd like it!  I was so surprised by how easy it was to make, and how tasty it was!

I simply threw a cup of raw almonds into my food processor and processed until it was creamy!  

If you haven't tried almond butter, try it!

If you have tried almond butter, try MAKING it at home!

If you HAVE made almond butter at home...let me know if you have any unique recipes!   

And now here's how today went.

Make sure to check out Day 1 and Day 2!

Day 3 recap

 

Breakfast:

• 2oz Ningxia Red
• Balance Complete Shake (mixed with just water today)
• Digest & Cleanse capsule
• An extra 12oz of water

Snack:

• Not needed

Lunch:

• Same as breakfast

Snack:

• Plain rice cake with homemade almond butter

Dinner:

• Same as breakfast

Snack:

•  1 orange

How I felt today:
Today was pretty good!  No headache today, which is great.  No cravings either!  I can't TELL you how awesome that feels!!!  I LIVE with cravings on a day-to-day basis.  So this is a huge relief. 

I am also finding that I am satisfied with such SMALL portions.  I'm not very good with portion control...never have been.

So to be satisfied with ONE rice cake with almond butter is pretty amazing to me.

As far as hunger goes, I did get pretty hungry around 2:00, which is when I had that rice cake.  I wasn't starving though.

A couple things I noticed this morning. 
  

• #1: I forgot to take the Digest & Cleanse a few times!  

The pamphlet did say that the capsules were mainly for preventing cramping or excess gas caused by the fiber that's in the Balance Complete Meal Replacement shake.  I really hadn't experienced any of that (until today), so I think that's why I've forgotten about them a couple times.  I am noticing a little bit today (no cramping though), so I'll be sure to take one with each meal from here on out!

• #2: I've been slacking on my water intake!  I'm supposed to drink all those ounces of water as directed with each meal and there's been a few that I've not drank enough for.

I'll make sure to be consistent with both of these for my last two days!

Another great day, I have no energy loss, no fatigue, no cravings, hunger pangs, or mood swings!

I'm definitely looking forward to eating more solid foods on Sunday though!  

Oh, and I wanted to mention that next week I'll be starting what is called a "Petrochemical Weight Loss or Detox".

I wanted to wait for that until after my cleanse.  

So watch out for that series next!

Read day 4 here!
Read day 5 here!




Disclaimer: I am not a doctor or medical professional.  I simply make decisions on how to care for and improve the health of myself and 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.