I have an autoimmune polyglandular dysfunction as part of my illness and hairloss is part of it. When I lost hair like you described, my FSH (follicle stimulating hormone) was out of whack along with other stuff. While prednisone helps, I would try to get a single consult with a pediatric endocrinologist (or an endocrinologist who also sees lots of children). Many people with severe autoimmune endocrine problems have unremarkable bloodwork and a good endocrinologist will look at everything, her skin, reflexes, meds, everything and can order very specific tests. Endocrine disorders can be very disfiguring if let go too long, and I wouldn't wish that on anyone. At the very least, I would ask for the FSH bloodwork to be done. You don't have to have bad bloodwork to see an endo, at least not a good one. Physical symptoms like vitiligo, alopecia (hairloss), neuropathy, diabetes, and other things your doctor may note can be enough to have an endo check out your child. My childhood was miserable due to undx hypothyroidism because I was tired and puffy and just felt lousy.
I'm glad your doc is keeping her on the pred. And I'm so sorry that you and your child are going through this and I'm sure you'll get it sorted out soon and things get better soon. One thing to note is whether the follicle is coming out with the hair. Also, if you want the referral to the endo just to make sure there isn't anything odd going on, a dermatologist might be more quick to refer you to an endo (bring some hair in a baggy) while other docs may feel they can handle it themselves or just lump it in to another disorder. Whether or not the follicle comes out with it is something my docs always wanted to see, to know if it was breaking or was temporary hairloss vs permanent. Most of my hair grew back but it is only half as thick as it was. At least it covers my head now. I also developed pigment problems,which is why Isuggested the endo and derm, and those unfortunately are permanent because the endo and dermatological aspects were not treated in a timely fashion.
I'm sorry tosound so gloomy, just worried. Take care.
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids