Jer and I have hit our limit. We have sat by idly for the past 3 months and watched our daughter's hair fall out. Day after day we prayed it would slow down, plateau, let us catch our breath and regroup, but no such respite has arrived. And so, we are waving our white flag and starting Charlotte back on topical steroids.
I know, I know...This is a huge 180 from what I said 3 months ago, but doing nothing is a lot easier said than done. I was not prepared for the extent of hair loss that was to come.
How can we sit here and let all of it fall out when we have a bottle of medicine in the cabinet that could stop it? Reverse it even. What if this round of treatment is the round that sends it into permanent remissions?
I think my breaking point was this: Yesterday, siting on the couch with Charlotte, rubbing my hand through her hair and pulling out large clumps (per usual) she looks at her lost hair and says, "Mom! Why are you taking all my hair away? I need that hair on my head!" I asked her, "Would it be okay if you didn't have any hair on your head?" through tears she responded, "No! I very need all my hair. Please stop taking it."
And with that, I resigned my dedication to a year of no treatment.
We have also read some stories about spots being less likely to respond to treatment after a certain amount of time. (No confirmation of that statement)
If she keeps up hair loss at this rate, she will be bald by the end of summer.
Here is a picture of how much hair you would have in your hand if you rubbed them through her hair one time:
So here is our plan... 4 weeks of topical steroids, followed by a 2 week tapper. We feel, even if the hair starts falling out again after she is off the steroids, she will have at least made up some ground in the meantime. So far, she has always responded to the steroids; we are praying that is the case again this time.
One thing we will be doing differently this time around is leaving out the Minoxidil. Stanford is very assuring that the excess forehead and back hair can be attributed to that medication. She has never been treated with just steroids, so we are extremely hopeful that the subtraction of Minoxidil will minimize extra hair growth.
Yes, we acknowledge she can't spend her whole life on steroids, and that is certainly not our plan. But right now, we feel comfortable with a maximum of 2 rounds per year. This being round one. We will also continue to look into alternative treatment options to fill in the gaps.
Thank you all for your support and encouragement. This has been such a difficult road.
As with every parent, we only want the very best for our sweet girl. We pray that we are making the right decisions.
Here is a glimpse of how advanced the hair loss has gotten. The pictures don't fully do it justice and it is beyond the point of covering the spots anymore with hairstyles.
