support – Page 2 – Preventable: Protecting Our Largest Organ

Feature #25: Iylah-Rose

Iylah-Rose

Age: 5 and a half years old

Career: Just started school this year (currently manages to attend 50% of the time, and homeschools the other half due to TSW)

When did you cease using topical steroids: March 11, 2016

What type did you use: She started on over the counter low doses in 2014 sparingly (Dermaid, Hydrocortisone Acetate 1%, mild potency), before being put onto moderate potency betnovate 1/5, cortival 0.02%. It would clear for a few days and she’d be pale white, before her skin would erupt in eczema worse than it was previously and she’d be put onto antibiotic cream (bactroban ointment) and a round of internal antibiotics (usually cefalexin) to settle what had turned into a skin infection.

This cycle continued for a few months, while she became more allergic to foods and environmental factors.

We finally got her in to see a reputable dermatologist and she was then put on further antibiotics, potent steroids- Eleuphrat (x2 daily for 4 days with 3 days break, the rebound flares in this 3 day break were horrid for her), Tacrolimus 3% (immunosuppressant protopic – we were told by the derm that this was better for her face because it didn’t have steroids in it, after which I questioned why I couldn’t just use it all over her body instead and his answer was “because it’s too expensive”, it was $50 for a 30g tub, it didn’t last long, we had no idea it was an immunosuppressant!), the next appointment her dosage was upped again, and we were told to keep up with the creams 3x a day for 7 days OR UNTIL IT CLEARED (this was after explaining how horrid the flares were when we stopped for her 3 day break as prescribed in the previous appointments).

She was already showing all the symptoms and signs of RSS, we had NEVER heard of it before, but knew she was getting more and more unwell, this was Dec 2015 and she could no longer eat anything (even her safe food of chicken and rice would cause a facial flare that was similar to that of the beginnings of an anaphylactic reaction) During this time, she had been given oral steroids 3 times in emergency (the latest being january 2016 after she ate half an orange and had painful hives for 48 hours straight).

By February 2016, she was no longer well enough to attend daycare, she was constantly covered in blood and sores, unable to sleep, needed her ventolin puffer twice daily, her IgE levels were 10 thousand times above the normal range and we decided with our GP to trial 6 months removal of steroids as all other triggers had been eliminated. When we contacted our derm and told him our decision, he ceased all contact with us.

What happened next was beyond hell. That’s when we found itsan.org and it all clicked! I remember being so happy we found the solution and thought, a few months is going to be hard but we can do this… after 6 months I remember promising her by summer she would be better, when summer came I promised her by next summer she will be better…

What is your favorite product for comfort? It has changed during the months, to start with she could not stand any water and we sponge bathed her a few times a day, she also spent the first few months in soft pj’s and resting as she had no energy. We did full GAPS with her to heal her gut, this was hard but she was so sick and so reactive she didn’t mind having soup every day (and gummies!). Then, by month 3, the only place she was comfortable was in the tub, the water had to be hot and she would stay in there for hours, sometimes up to 6 hours a day. She would watch movies in the bath, eat her lunch in the bath.. we spent a lot of time in the bathroom! This was her main comfort for months, and the only way to ease the constant crippling itch attacks and keep her body clean as her skin was raw and open with ooze, and again it was pj’s everyday, we even had day pj’s and night pj’s! She was wet wrapped all over to stop her from sticking to her pj’s, and her face was bandaged to keep the open rawness protected (even the wind would sting if she went outside)

By month 8, she was showing signs of healing and was finally seen by the specialists at the Children’s hospital, they applied for IVIG therapy for her (Intravenous Immunoglobulin) and this started in month 9 TSW, she has the infusion monthly via cannulation, and she absolutely hates the needle but when I ask her now what makes her feel better – she says her medicines from her needle. She has improved ten fold in the last 4 months, and although the hospital hasn’t agreed to her being in TSW (she is considered as severe eczema) it has been a godsend in helping her move forward, she was even able to start school this year! There was no way she was able to leave the house for more than 45 minutes a few months ago with out having a complete crippling itch attack, so it’s comforting that her immune system is on the mend.

What is the hardest thing to deal with during this condition? Not being able to play, to run, to jump, to go to school, to dance, to do sport, not being able to be normal like before steroids.

What is the first thing you will do when healed: Go to school full time! – Iylah

When we can afford to, we will be taking our family on a much deserved holiday! To the sunshine, to enjoy the water, the sand and the sun without any pain xx

Interview #12: Torrin Bennett

Torrin Bennett

Denver, CO

1. When did you start using topical steroids and why?

Torrin started at about 4 months for eczema. Small patches first seen on his upper lip and back.

2. What was the name of the topical steroids?

He was first prescribed hydrocortisone.

3. Were you ever prescribed more potent steroids?

Yes, over the next 8 years of his little life he was on and off of these steroids. Also, under occlusive wrappings (Wet Wrap Therapy for his last two years)

Hydrocortisone, Betamethasone Diapropionate .05%, Desonide .05%,Fluticasone Propionate .05% (external cream),Fluticasone Propionate 50mcg (nasal), Qvar 80mcg,Triamcinolone Acteonide .1%,Qvar 40mcg,Elidel 1%, Fluocinonide .05%, Fluticason Propionate .0005%, Mometasone Furoate .1% (cream), Mometasone Furorate .1% (ex ointment), Mometasone Furoate .1% (ex oint), Protopic .03%,Pulmicort 1mg (inhale), Qvar 40mcg.

4. How did you find out about RSS?

On September 11, 2014 I was researching hemp oil (anything to “cure” him) on Amazon. I was told to check out a few sites in that review and ITSAN.ORG was one of them. As soon as I read the signs and symptoms, I knew without a doubt Torrin had RSS.

5. What made you feel you had RSS?

He was full body red, extreme itchy, dry/flaky skin, water burned and stung him.

6. Were you diagnosed by a doctor? Did you have a supportive doctor?

Yes, his pediatrician listened and read the ITSAN material. Then to just educate her on RSS and/or if we needed any medicines, we confirmed the RSS diagnosis with Dr. Rapaport via telemedicine.

7. What were your first symptoms?

Before we knew it was RSS, Torrin already showed signs of TSW ( “bad dandruff”, dry/flaky eyes and skin, redness, sensitivity to heat and water. When we stopped all steroids on 9/12/14 within a few days he became really red, itchy all over. His legs were swollen and could barely walk. The horrible “pins and needles”.

8. Is your family supportive? Friends?

Yes, our family was supportive. Friends were supportive but many just dwindled away and stopped asking to do things (because we couldn’t). We had no life for 2.5 years, basically.

9. Have you ever been to a hospital for this? Why?

Yes,about 28 months in I took him into Urgent Care because his arm looked like eczema herpeticum. Thankfully it was not.

10. What was the hardest part of this condition?

Everything! Watching your child itch himself till he was bleeding, the pain that followed, “pins and needles”, water like acid on his skin, watching his friends go to school, play sports, vacations, swim etc. We went from a very outgoing, athletic family to holed up inside their prison home for months and years.

11. How long have you been in withdrawal?

Since September 12, 2014, 29 months. Torrin is still in withdrawal and has flares on his wrists, knees and feet but nothing like on or after steroids. He was able to bathe and swim after 1.5 years into withdrawal.

12. What do you use as comfort measures through this?

At first baths and Aquaphor for 6 months into TSW. After that he chose moisturizer withdrawal so no bathes and very little Lemongrass Balm from Stephanie Home Apothecary and Honeypacificaco.com. Also, ice packs and fans.

13. Are you employed? Has this affected your job status?

I have always stayed home with my boys. I only worked part time but had to give that up to take care of him 24/7. Our family, unlike many others, were financially stable.

14. Has this affected Torrin’s education?

Yes! He missed all of 4th grade because he was bed ridden. I homeschooled him online last year and some of this year. He went back to school on 2/1/17. He was also held back a grade.

15. Have you gone to therapy/wish to go to therapy because of this condition?

No, we have not gone. Torrin seems to be doing fine and adjusting at the moment. Me, I’d like to go since I have been experiencing depression, anxiety and PTSD.

16. If there is one thing you could say to another sufferer, what would it be?

Sometimes just allow yourself to just lay there and breathe if that’s all you can do at the moment. Sometimes that’s all I could do as I laid on my bathroom floor at 2am crying because I watched him go through so much pain.

FAITH in God, HOPE that he will heal and the LOVE for my child is what got me through each day.

Thank you so very much for sharing your story, Torrin!

More From Sufferers

Hey Preventables,

I wanted to make another blog just showcasing some of the things that are being posted in the groups. This PREVENTABLE condition is causing so much pain and suffering. All I wish to do is play a role in ending the overprescription of topical steroids so this pain can end. Please consider donating to this cause either through the project PayPal (preventable.doc@gmail.com), or through the donation link on the front page.

Way too many of us get laughed at in a doctor’s office. How inconsiderate, especially if we are bringing FACTUAL resources with us written by other doctors.

This is so much more than a skin problem. Our mental health comes into play and we need all the support we can get.

Doctors are prescribing these drugs to be used on places the very drug itself says NOT to be used on. There needs to come a point where the “DO NOT USE PAST 2 WEEKS…. unless prescribed by your doctor” needs to be abolished. Just because the doctor says to do it, doesn’t mean the warning on the label goes away.

I, personally, did two sets of tapering oral steroids. My skin gradual got better on the pills, but as soon as it tapered off, I went right back into this mess.

How unfair this that? Even when there is proof, a doctor is going to deny it? It makes absolutely no sense.

So many people who don’t believe in this say they think its outrageous that people are doing this and should go back to the drugs if they are suicidal. When will the thinking start turning towards saving people from this by actually prescribing these drugs correctly/actually finding out the cause of the patient’s problem instead of continuing to endanger patients and call them crazy for ceasing to use a drug that is literally destroying them from the inside out?

I saved the best for last. This hits home for so many sufferers.

This is not about bashing steroids. This is about showcasing how overprescribing these drugs are ruining people’s lives in every way imaginable.

ITSAN — Doctor Pages

As many may know, ITSAN.org is the non-profit organization that advocates to help fight against Red Skin Syndrome and stands as a refuge for those who are suffering and have no support. ITSAN stands for International Topical Steroid Addiction Network.

The team leaders, Joey VanDyke (President) and Kathy Tullos (Executive Director), have poured their heart and souls into this organization to help out everyone who is lost and weary while enduring this heartbreaking condition.

One way they give back is by making it as easy as possible for sufferers to advocate for themselves. These woman get paid hardly any money to do full time jobs in order to make this possible.

Kathy went above and beyond and created this detailed, incredibly informative page that we all can show to doctors in order to help them see that this condition is not only real, but should be taken very seriously.

DOCTORS PAGE

Please, use this page whenever you are trying to inform doctors of Red Skin Syndrome. Here is just some of the wisdom found on this page:

This page should be utilized in every way to spread awareness.

In Our Shoes

I have been wanting to do something like this for awhile. It is just an extremely minuscule snapshot of what gets posted in support groups for Eczema, Red Skin Syndrome, or Topical Steroid Withdrawal.

Many professionals, who are meant to care for a patient, fall (very) short when it comes to speaking about adverse affects with steroids. It is egregious the way some patients are treated in a doctor’s office.

#1

To be laughed at is already demeaning towards someone who is ACTUALLY trying to inform you of a very serious and highly factual condition, but then, as a professional, negate that it is real… this is where the problem lies. We are told to trust in our doctors and that whenever we have a question or concern, they are who we should be going to. BUT, what if our professionals don’t know it all? Red Skin Syndrome is not a joke and certainly isn’t a laughing matter. To be completely written off and spoken down to while the patient was the one who really knew the truth, is astounding. We should not be having to stick up for ourselves at any medical facility. We are going through enough physically and mentally. Most don’t even try to go to doctors anymore because they are tired of being made fun of when they should be getting the care they deserve and need.

Preventable: Protecting Our Largest Organ will help doctors understand the seriousness behind this condition and how they have it in their power to stop this from ever happening again.

“They told me I would have to use this for life.” And we are called steroid phobic because…?

How outrageous to tell a patient that THIS is the only way to help them. It states it clearly on the inserts that this SHOULD NOT be used for long periods of time. To tell a patient that the health of their skin depends on this drug forever is not only an ill educated prescription, but a lack understanding of what these are truly capable of doing.

Preventable: Protecting Our Largest Organ will help disseminate correct information about topical steroids and what they are doing not only on the surface of our skin for long periods of time (even 2 weeks!), but what they are doing to the inside of our bodies as well.

Here in lies the problem with Western medicine. They have ONE go to when it comes to skin ailments. Most will stick to that one trick. You most certainly have a chance of getting better without steroids. The problem is that they are taught that only one method, which is meant to help mask symptoms, not offer a healing change towards the cause of your symptoms, works. Now, we do have a few other options, but in my opinion, they are still either so new we don’t have any knowledge on the damage it could also be doing and/or we know the drug is dangerous and comes with risks just like steroids do. But I see in so many posts how doctors asks patients ‘why did you bother coming in if you weren’t going to take the steroids?’ We are paying for their services and care and yet are being treated as if we’ve wasted their time. Perhaps we were hoping for more than just ‘here are some steroids’. It just simply is not acceptable anymore for this to continue to happen.

Preventable: Protecting Our Largest Organ will shatter this opinion of topical steroids are the only method to treat eczema. We have so much new technology and medical advancements that we have the power to truly find out what is causing our skin to lose control. We can test for allergies, irritants, gut problems, stress issues, autoimmune disorders… we can’t go on just nonsensically masking our problems with a medication for long periods of time that can actually cause us detrimental harm in the long run.

Again, this type of condescension is not helpful nor is it particularly kind.

Other posts I tend to see are heartbreaking, ones crying out in desperation as to why this is happening to them. They are losing their jobs, their relationships, their family… ALL from a preventable condition.

This has got to end. And we can do it. If anyone feels moved by this project and wants to help this type of suffering, please visit the sponsorship link above for a tax deductible contribution, or visit the donation link above if you do not need a tax receipt.

Tag: support