This consumes me and helping others

This weekend we were visiting with some neighbors.  One neighbor is expecting her first grandchildren- twin girls.  As we sat and talked about the sale cycle of Gymboree and Carter's coupons, she said she was consumed with the twins.  They are all she can think about.  I just paused and looked at her.  I said, "I know, Bo's skin consumes me.  It's all I can think about."

During the last 15 months he has been itching, oozing, scratching, crying, and shedding some days non-stop. Most people in TSW have to take a year or more off from work.  Many parents have to adjust work schedules so that one parent is always home with the child going through TSW.  We are very lucky.  Bo has a wonderful daytime caregiver, who has fully supported us and cared from him during TSW.  Ms. Pam is a God sent!

So you may be thinking, "How did this happen?"
The long and short of it is that Bo had a small spot of eczema on his cheek.  He was treated with a low dose hydro-cortisone and it would not go away.  In fact, his eczema spread.  We were referred to a dermatologist who put him on stronger steroids.  On these medicines, his skin only worsened.  Looking back, I don't know why I didn't suspect the steroid creams.  Mostly because EVERY doctor (3 derms and 4 allergists) all said they were the only treatment.

We stopped steroids in March of 2013.  The past 15 months have been really hard.  Bo has trouble sleeping.  I've found from researching that it is probably because the body produces less natural cortisone at night.  He has an intense itch that can not be stopped.  Because of this, he scratches himself until he bleeds.  Therefore, he wears footed pajamas most of the time.  We have had a huge break through in the last month because he is able to wear pants and short sleeves.  During itching fits he begs for his pajamas.

His goes thought what are called flares in the TSW world.  This is where he itches, sheds and oozes more intensely than other times.  He is never 100% comfortable, but he has better times than others.  In the beginning, his flares were almost all the time and all over his body.  Now he flares every few weeks, and his flares are localized to his face, neck, and legs.  His arms and trunk are mostly healed.  During a flare, his only comfort is to be held and rubbed or scratched.  ALL THE TIME.  This is where we are so lucky to have Ms. Pam.  When we are at work, she holds and scratches him.  A true labor of love.  At home, we have sacrificed many things to sit and hold him.  Dinner goes uncooked, floors go un-swept, we go without sleep and Kate has to be very patient.  Many times as I'm scratching and rubbing, I'm also researching.

Here is the major problem.  This condition is not recognized by 90% of dermatologist.  However, It's very real.  We've lived this nightmare for 15 months and counting.  I am in a facebook group with 1500+ members, all suffering from TSW.  Another group for caregivers has 600+ members, not all the same and the 2000 member group.  The ITSAN forum has 2000+ members and is growing at the rate of 5 members per day.  Doctors continue to prescribe steroids and give off-label instructions.  The inserts clearly state that the drug should be used for only 5-7 days.  People are using them for years.  My pediatrician was the only doctor who properly warned us about the use of steroids. Still, he had no idea that the skin could become addicted and cause this type of withdrawal.  The other doctors we saw assured me they were safe.

We used topical steroids for an 18 month period.  Some people in the group were addicted in as little as 10-11 doses of OTC cortisone.  These drugs as not harmless!  I am currently working with a group of mothers to hopefully bring awareness to these side effects.  We are not ready to release our action plan yet, but I hope it will change the treatment of eczema for other children.

The past few days have been especially emotional.  Bo is registered for Bible School at our church this week.  I'm not sure that he is going to be able to participate.  He is very uncomfortable when we are not around.  I'm not sure if it's separation anxiety or if he is afraid he will itch or hurt and others will not know how to care for him.  Either way, it makes me a mess worried about him.  I really want him to go and be successful because I have signed him up for preschool in the fall.  He needs to be with other children his age and get used to being part of the group.  I pray that he will heal enough to experience VBS and preschool.

Also, I think the stories of others are taking a toll on me.  When Bo was so sick, all we did was function to make it from day to day.  We slept very little (and still don't sleep some nights) and literally just made it through the day- one day at a time. The only way I have made it though is to keep telling myself, this is not life threatening, he will heal, it's only temporary, he is too young to remember it, and other positive self talk. I feel that this journey is one that needs to be shared and that I need to help other moms.  Prevention is the ultimate goal, but support for others suffering is also a priority.  As I read the desperate posts of other moms, it breaks my heart knowing what they are going through.  Emotionally, I may have been better off when I thought we were alone.  On a positive note, I have made several friends through this.  We chat on the phone or facebook about symptoms, remedies, and how to help others.

At this point, we need prayers for Bo's healing, guidance for the mom's group (for change and support), and strength as we finish this long fight.  Also, if you know anyone that you think is going through this, please let me know!