Coming Up on a Year

We are coming up of a year of David’s alopecia, and almost at a year that he’s been on his new diet.

I feel like I should have answers now.

I don’t know if I expected some great study on alopecia to be published, or the doctors to know more by now, or for one of our theories on what was causing it to work.  I don’t know if we just need more time, or if this will just be life from now on.  From conventional to natural treatments, equally making no promises, all of them say that if they work, they usually work within 12 months, so give it time.

And he still has no hair.

I don’t know what to tell David when he asks if his hair will ever grow back.  It’s like last summer when he was losing his hair, and he cried when I told him that he needed to take a shower because he was scared that if he washed his patchy hair, the rest of it would fall out and he would never see it again.  And I couldn’t tell him that his fears were unfounded.  I had to tell him that could very well be the case.  I had to show him my bravest face.  And we prayed together, and hugged hard before he went to take his shower, that he would have courage to wash his body, knowing that touching his hair would make it fall out forever.

I won’t forget that day.  Ever.

Besides being cosmetically different, the only effects of his hair loss have to do with his eyes.  We didn’t see those problems coming when he lost his eyelashes.  This winter we learned that the wind literally burned his eyes, and he needed to wear ski goggles when outside in cold, windy areas because his eyes literally had no protection that lashes usually give.

We recently talked with an eye doctor, to give us a heads up of any other things eye lashes do that we need to accommodate.  She said that eye lashes give significant amounts of UV protection, and he should always have sunglasses on whenever he is outside in the summer, no matter what.  He could easily burn his eyes without eyelash protection.  He still had his eyelashes last summer, as they didn’t drop off until Fall.  Already, with the sunny days we’ve been having, David’s eyes have been extraordinarily sensitive to the light, and so we’ve drummed up 1 pair of old glasses, but I think I’ll keep a pair in my purse, and a pair or two in the van in case they get lost or damaged as we are out and about.

There’s just things you don’t think about.

Has the diet helped?  Absolutely.  His nervous system especially, his ADHD, his learning disabilities all took a dramatic turn on his new diet.  He shot up in height like crazy as his body is finally absorbing nutrients better.  David loves how he’s been feeling on the diet so much that he was the one who talked with the doctor of extending it, because he was certain he could get his hair to regrow, and he doesn’t want to go back to how he felt before.

But the hair hasn’t regrown, and his doctor thinks that this summer, we should introduce a few of his foods that were low on his allergy list.  David feels like this means we’re giving up.  Instead of feeling excited about eating some of his favorite foods again, he’s discouraged.  It’s like this means his hair loss will be forever.  Some things like gluten and wheat will never be introduced, because of how severely they damaged his intestines, but some things like coconut would be awfully nice to have back, and he might be able to tolerate them now.

David’s supplements have been adjusted and tweaked this last year by his doctor.  (This is his current daily regimen of pills and powders.) One was so intense, he was only allowed on it for 3 months.  A few months back, she added a hair skin and nails one.  It’s supposed to concentrate on supporting his thyroid.  The reason we didn’t start off with this supplement was because it had flax in it, which was on his allergy list, though pretty low on the list, and his doctor wanted to see some small intestine healing before we experimented with this thyroid-related supplement.  We didn’t see anything bad when we started him on it, which was what we were hoping, and David felt that there was a tiny bit of fuzz in one area of his head after being on it for 2 months.

I felt it, but it was very, very soft and difficult to even feel, and impossible to see.  I want to be excited for him, but I also don’t want to give him a false hope.  We ran out of the supplement for about a week (big mom-fail there) and once we got it back, his small patch of fuzz was gone again.  (I did note that he had more trouble managing his anxiety that week being off of it too.)  David very enthusiastically is back on it, from the moment it was delivered to our doorstep.  He’s convinced it will help him regrow his hair.

But we just don’t know.  I’m trying to focus him and myself on just healing his body, and not the hair.  The important thing is finding out he was not absorbing nutrients properly, and his small intestine was literally shredding, his liver was functioning at 1/2 power, and even though his thyroid labs were fine, apparently that needed a boost too.  The hair is just a symptom…of something…

We can only guess as to what.

Or maybe there isn’t a reason.  Maybe alopecia is caused by something genetic, that can’t be fixed, and isn’t a symptom, but just…is.

No. One. Knows.

And we just have to fix what we can, and live with what we can’t.  It’s hard living with no answers, and not knowing if you should give your child hope or not.

Knut has found yet another doctor who might have a different angle on this, and wants me to set up yet another consultation.  I will, and soon.  I wonder how many more doctors we will see before all is said and done.  I wonder how many more, “Well, we don’t know for sure, but I think you should try this…” conversations I’ll have.

We are coming up on a year.  This year has been one crazy ride.  I’m so grateful for all it has taught us, and where it has brought us as a family.  We are grateful that we discovered some very significant health issues with David through this process before they impacted his body more dangerously.

We’ve learned that God draws near, and you can survive living in the unknown.