We've heard this phrase cross Tater's lips for so many years due to her eczema and dry skin that we thought nothing of it when she started saying it with increased frequency in September. We noticed a few new "spots" on the left side of her chest, but understandably assumed it was yet another patch of eczema and treated it with the same steroid oil that we have always used. The itching got worse, the bumps seemed to spread, and we added in Benedryl to help her find some relief, especially at night.
Then her asthma flared in late September, early October and we ended up at the pediatrician's office. Just by chance I mentioned the bumps, saying it looked a bit different than her normal eczema. Her doctor glanced at the bumps, said "Hmmm" and looked MUCH closer. He said it was called Mullescum Contagium and was related to the wart family. Based on his experience, there was no need to treat it, it was a virus and would run its course...in about 12 to 18 months! He felt that as long as it didn't spread or appear on her face, we could just leave it be. When i asked how she got it, he related it to her immunity issues as a result of her kidney medicine. All I could think was "That da** medicine. I hate that poison...but what else can we do to help her kidneys..."
So we went on our way. That night I "googled" the name of the rash...and I immediately closed the website down. The doctors always tell me to stay off the computer...that it just upsets me more...and this time they were right! People with immune issues develop this virus...immuno-deficent people... Enough said...I needed to ignore all I saw!
So months passed. We made it through many more itchy nights...and days...and afternoons...and mornings... Until she had another asthma flare and we ended up back at the doctor. The rash had spread...across her chest, down her belly, on her thighs, and around her back. Poor girl was SOOOOO itchy...ALL the time! This time the doctor recommended we make an appointment with the dermotologist.
Daddy took her to that appointment. The dermotologist felt there was nothing we could do and suggested we just wait it out! Ugh! She did confer with the nephrologist and they decided to slightly lower her kidney drug dose to help her body fight the virus...that we now found out is related to small pox...yes, small pox! That was 4 weeks ago.
2 weeks ago, I decided no one should have to live this way...her or the rest of the family! Keep in mind that every time she gets up with her itchies, she wakes Mommy up! Yes, it's like having a seven-year-old newborn who can walk and talk and cry very loud! We are up about every 3 to 4 hour every night...and there is nothing that I can do for her!
So, I called the pediatrician again. This time I demanded an appointment and one with OUR doctor. Thankfully they listened and realized that I was not in the mood to be argued with! Dr. L. took one look at her and admitted defeat. He had no answers. I almost burst into tears right there. Then we talked through it all and made a plan. That's why we love this doctor...he gets that I need a plan! He prescribed a new antihistimine, with no promise of it working, and promised to call the head pediatric dermotologist in the state and demand an appointment. And he did...within a week!
So, Monday (after a week of the new medicine that provided minimal relief) we met with Dr. B. He took one look at her and admitted defeat...sound familiar? I'm seeing a pattern!
He went on to explain that he had only seen a case as serious as hers once or twice in his entire career. And those children were receiving chemo treatments that would end...Tater's medicine will not end. He concidered treatment, which would involve multi-week treatments that "burn" the bumps off. But she has so many bumps and some many close together that he wasn't sure it was even a realistic option.
So what did he decided to do? We are seeing him and all his partners, along with visiting physicians from NYU, tomorrow morning for pediatric rounds. My baby is going on display to see if anyone has any answers. She has now become a case study. I know just how stumped this doctor was when he suggested this step...because he told us he
never brings his patients to rounds.
We are out of options.
We are terrified that there is no solution for this poor child.
We are putting all our eggs in one basket tomorrow morning.
Say a little prayer that there is a "magic bullet" that one of these amazing doctors will know about.
We are at a breaking point...
