Eli the Great: Topical Steroid Withdrawal  

This week has been tough. I’ve been very emotional, the smallest things have set me off. I look at Eli’s skin and I know that we are doing the right thing. That doesn’t stop me from thinking that this is my fault. How could I let this happen to my little boy? I feel like I have to defend myself as to why I’m letting Eli suffer when it would be so easy to put steroids on him to “clear” his eczema. Because this is just recently recognized by the medical community I need to be ready to argue my side of TSW.  This terrifies me, I have to make the doctors understand what steroids have done to our son. I’m so grateful for my friend Pam who has been helping me along the way. She has been going through TSW with her son and has given me great advice and support.

Eli has been seeing a speech teacher since November, progress is slow. He can’t tell us what he’s going through. I feel like he has regressed since January 1st when we stopped steroids. It makes sense, his little body is overwhelmed with skin issues. Eli has come out with full sentences before, with clear and concise words. Those moments are few and far between. This week he’s been saying “I love you” a lot ( this triggered a breakdown ) we are praying that as his skin gets better the speech will improve.  Just another bump on our journey.

Click here  ITSAN.org

Look at that face… He loves Dada’s boots

It simply amazes me how you can be covered from your neck to your toes and be so uncomfortable and keep a smile on your face. Eli has this undeniable strength to go on about his day and act like little boys do. Where does that come from? Eli had a pretty good nights sleep, we have switched to Vasoline for the time being. It spreads easy and is a hell of a lot cheaper than some of the “miracle cures” that are out there. We are waiting on Eli’s sleep suit to arrive from London. There is only so much we can do to keep him from scratching. We just want our boy to have a fighting chance at a future with healthy skin. It sounds so simple, and for most parents luckily you will never have to give it a second thought. As for myself, I just need a fraction of the strength that E has to continue to do what is best for him.  Most days it’s hard to come by. Funny that I’m supposed to be the one teaching him in reality, he’s teaching me.

I love this face. So grateful for his amazing spirit.

I can’t remember the last time Eli slept through the night. We have now moved his toddler bed into our bedroom. He goes down at 8pm and will sleep for about 3-5 hours before waking. The Zyrtec doesn’t seem to be working through the night. Yesterday he woke up with bloody scratches all over his body. It was horrifying to see this when I was getting Eli dressed the next morning. We are looking into getting a bodysuit for him to wear to bed to prevent scratching at night. We just gave Eli a bath and his skin looks horrendous. We just need to make it through today, as with all withdrawal – one day at a  time.

Click here for Eczema Clothing options

2/5/2014

Still smiling

A rash has now developed in his diaper area

I am not a writer, just a mom who wants to share our experience with TSW.  If we can help at least one other person then it was worth it. Here is our story.

At 6 months old we took Eli to Children’s Hospital in Waltham Ma because of his eczema. We met with Dr Gellis who is a pediatric dermatologist. He explained to us that Eli had the most severe form of Nummular eczema, it shows as coin shaped chapped skin. He told us that topical steroids were our only choice in clearing Eli’s skin. He recommended that we use it twice daily to all affected areas. I voiced my opinion that I didn’t want to put it on his face and asked if it had any long term side effects. We were told more than once that there were no long term effects and it was our discretion to use or not to use it on his face. He also suggested Balnetar baths once a week until his skin cleared. We did just as the doctor told us and continued when needed for the next 24 months. Eli is now 2 1/2 years old. We have not used topical steroids as of January 1, 2014.

Recently my friend Pam shared with me her son Ryan’s story of TSW. I had never heard of it before, the pain and suffering that her son is going through made me cry. That afternoon we decided to stop topical steriods with Eli. We have just started week 5 of Eli’s withdrawal. He looks like he has second degree burns all over his body – thank God we never put the steriods on his face. Sleep is very erratic, he would wake up as soon as the Benadryl wore off. (Eli had a reaction to liquid Zyrtec so we are now crushing pill form) Nik would sleep with Eli in his room and tried to comfort him, many nights with no luck. He would still be asleep some nights clawing at his skin and whimpering. As a parent you want to always be able to comfort your child, it has been heartbreaking to watch helplessly as Eli struggles.

We started using Maya’s Wound Repair which is all natural and made by a mom in California out of her home. So far it has helped ease Eli’s pain and discomfort. We have an appointment to see a Naturopath next Wednesday. We are hoping to get some advice on E’s diet that might help. Eli has been such a trooper through this ordeal, we are ready for the long road to recovery. We will win the battle. We want to spread awareness so others won’t have to suffer the withdrawal.

Click here ITSAN.org for more info on Topical Steroid Withdrawal

Maya’s Eczema Products can be found on Facebook

Dada and Eli at Children’s 12/2011

Eli’s 1st tar bath

You can see the eczema around Eli’s mouth

Eli’s eczema patches 6/2012

Eli’s belly rash from the liquid Zyrtec 1/2014

Legs & feet covered and swollen 1/2014

I have no idea how he manages to smile while so uncomfortable 1/2014

Most days he prefers to be shirtless 1/2014

Nik calming Eli down 4:30am 1/2014