Your child's doctor appointment for Alopecia - What to expect

Your child’s doctor appointment for Alopecia: What to expect

Winning Alopecia

Your child’s doctor appointment is where you have HIGH HOPES to finally get answers. Will you, though?

You spend days and weeks searching for the ‘best doctor’ and waiting for the appointment. But before you get your hopes up… here’s what to expect at your child’s doctor/specialist appointment for Alopecia, shared from my experience having seen about 10 different doctors and specialists for my child’s Alopecia, between the age 19 months to 8 years old, across two different countries.

  1. The docs will diagnose and tell you what  type of hair loss your child has, usually either alopecia areata, totalis, universalis, or something else that is likely not autoimmune-related, such as fungal infection, etc.
  2. They will order labs (blood test) which will most likely come back “normal”. If they find deficiencies, they will ‘treat’ your child for those, but won’t find out the cause.
  3. They won’t know what causes the hair loss, except to just say it’s autoimmune. Some will venture “guesses”… stress, recent infection, allergy, or that your kid may have been pulling out their own hair.
  4. They won’t know when you ask them the prognosis… will the hair grow back? how bad will this get? Each doc has their own version of how they think this will go. Reality: no one knows, not even the ‘professionals’… no clue.
  5. They don’t know what causes it but they will tell you it’s nothing to do with your child’s diet or the environment, perhaps maybe just to the extent of things like “do you eat enough food containing iron/protein/etc. Very surface level ‘basic’ stuff.
  6. They will prescribe: minoxidil/steroids/immunosuppressants/antihistamine (allergy meds), antibiotics, or even stronger drugs like JAK inhibitors etc. Steroids and immunosuppressants will be given in either pill or topical cream/lotion. They rarely discuss side effects and they don’t know how effective these treatments will be. No matter which doc you see, these are all they have in their toolbox, nothing more.
  7. You spent time preparing a list of thought out questions but it will likely be a super short appointment because they won’t be able to nor have time to answer your Q’s.

Docs are your first stop. But oftentimes, I see parents getting their hopes up and having too high of an expectation of what the appointment will bring them.

Remember, docs have a role and they are trained in one aspect only. What they offer you does not represent ALL your options.

All the hair growth we got did not come from MSM: no pill, no shot, no topicals. And this was right for us.