Billy started strensiq

When we were in St. Louis celebrating our anniversary last year, we were walking down the street, and Billy stepped on his foot "wrong" and it started to hurt him.  It hurt him for months, but was getting better.  Then in early summer it hurt him again, and so last fall he went in to get it checked out by a podiatrist.

When the x-rays came back, it showed that he'd fractured his foot in two places.  Just walking around.
Fragile bones is the primary indicator of hypophosphatasia.  Since it is a genetic condition, it was known that one (or both) of us carries the gene.  He has had low alp for all the years that we've known what hpp is. So, Billy started the process of being diagnosed with hpp, which begins with seeing an endocrinologist.

I asked the kids' contact at Alexion for recommendations of adult endocrinologists that have been trained to diagnose hpp and prescribe Strensiq.  She gave me two options, one local and one up in grand rapids.

Billy called to set up an appointment, but their office indicated that the doctor did not work with hpp patients.  I mentioned this to the Alexion contact, and they called him back the next day to schedule an appointment for after the doctor completed her training.

He's spent time in the facebook forums reading about other people with adult onset, and asking questions about other symptoms that he had.

I went with him to his initial endocrinology appointment, and ironically, he was not the first patient in their practice that they had diagnosed with hypophosphatasia!  The week or two before his appointment, they had an established patient with symptoms that they were able to diagnose as hpp, because of the training that they had received!

She prescribed strensiq for him, but the default answer from the insurance company is a denial.  So, he did some further bloodwork and more history.  He was still denied, so he went in for genetic testing.  Unsurprisingly, he has hypophosphatasia.

Finally, after 2 months of denials and appeals, he was approved for Strensiq!

The pharmacy that ships it was all over it, and sent it out so that it arrived just in time for him to be on the same order schedule as the three littles ones!

So now, shot night involves 3 extra shots (poor Billy) and lots of medication.

He's not noticed any improvement yet, but has had a few site reactions, like William and
Grace and Juliet did in the beginning.

Hopefully this will help keep him from breaking anything else, and help his overall health.

later days