Answers, at last!

Little Man has developed a rare disease, which has required multiple visits to doctors, hospitals, the ER, and home nurse visits over the last three months.  A scratch on the tummy during our trip to Italy in April just never healed correctly, so that was our first clue that something was going on.  Eventually he developed a horrible rash all over, which over the months was variously diagnosed as eczema, chicken pox, impetigo, and 'non-descript viral rash.'  And every time he'd get the teensiest of scrapes on the playground, it would turn angry red and blistery, instead of healing in a few days like normal.  None of the multiple prescription treatments have done a thing, not the 4 different courses of antibiotics, or the 5 different creams, or steroids, antiseptic baths, nothing.  Then, the rash attacked with a vengeance two weekends ago, sending us to the ER with huge open sores and blisters on a very swollen ankle.

From the ER, eventually we ended up being seen by the head of dermatology at the university teaching hospital, who diagnosed him with Linear IgA.  Nope, I've never heard of it either, and neither have any of the EIGHT other doctors who've examined Little Man since April.  In fact, try googling it.  All you'll get are technical pathologies and reports of medical studies, written for medical professional and practically unintelligible to us commoners.  It doesn't even have an entry in the WebMD or MayoClinic websites!  They see about 2-3 cases a year in Britain.  If we're understanding our doctor correctly, it's an autoimmune disease in which his immune system attacks the antibodies that would normally heal the skin, and creates blisters on the bottom layer of the epidermis, which then bubble up to the surface of the skin in little itchy spots, which then get infected quite easily and turn into big sores.  And when a small scratch or abrasion occurs, instead of the antibodies healing the scratch, they actually get attacked themselves, and make it worse.  Humph.

Thankfully, it's very treatable; already in the week since the diagnosis and new meds, Little Man's ankle is mostly healed and the rash is fading all over his body.  He has to go in next week for more testing.  Please pray for him and for me, as this will include biopsies and bloodwork, and you know I'm not good with that stuff.  In the meantime, it's quite a regimen we've got going on at our house - changing dressings twice a day, antiseptic baths, and a set of tight underclothes made of medical gauze that he has to wear under his clothes 24/7 to keep his skin from being irritated and the cream from rubbing off before it absorbs.  Thankfully, he loves the underclothes, which he calls his superhero suit.  We've decided to encourage that attitude, and bought a Superman patch to stitch onto the shirts, and a friend is making him a cape.  :)

This disease usually goes into remission in kids with the right treatment, but takes an average of 2 years to do so.  So we're in for a long haul, and would really appreciate your prayers for our family, that we all adjust to it well, and that Little Man doesn't get a complex from having to wear special clothes and having spots all over his skin.  That's my biggest worry, really, that he'll be miserable at school from teasing if the kids are insensitive about it.

On the other hand, as I've always said, God doesn't waste any experience.  And my own experience of dealing with childhood epilepsy until I was 12ish seems to be geting put to good use now for the sake of my child.  I know what it's like to have a long-term condition as a kid, and to have to take medicine every day, and get poked and prodded and tested by strangers in white lab coats.  Hospitals are familiar places to me, so they don't stress me out, which goes a long way toward keeping Little Man calm (and Big Man  too, for that matter!).  And, I've learned firsthand how to push the system, gracefully but firmly, to get the most thorough care for my kid.

And, not wanting to open a debate about health care funding, I will just say this: we're SO thankful that this is happening here in England, where we don't have to worry about the cost of trips to the ER and multiple doctor's visits, and batteries of tests that might top out our insurance premiums, and literally dozens of prescriptions now, which have all been absolutely free.  The bottom line: we're counting our blessings!

A few more things to be thankful for?

1. It's not contagious!  
2. The itching has subsided.
3. With the right meds to stop the itch, we're all sleeping through the night again!
4. Little Man is SO good at being examined.
5. It seems to be a relatively mild case, so far.
6. Our jobs give us plenty of flexibility for appointments and staying home with a miserable kiddo.
7. We have the most cheerful child anyone could ask for, in spite of the pain and intense itching.

What are YOU thankful for today?