Our internet has still been down. We have had to rely on our cell phone data to keep emails and some contacts going. However, I sat down to my computer to use some precious data to update you all on what is going on around here, and the internet is slowly working this morning. So I don’t know what that means. There aren’t many internet company choices out here, and when the one you use is (perhaps) going out of business, or at least unresponsive for you and your neighbors for weeks on end, you start looking for other options…and finding a few that make cell phone data look dirt cheap. Sigh.
I don’t know why it’s working this morning. But I will take advantage of it.
Our life has changed pretty dramatically this last week. I know I have written before that my son, David, was diagnosed with alopecia. Over a few short months, we went from a little spot on his head, to having to shave it completely because he only had 3 tiny spots of hair left. This last week we didn’t have to shave it at all. There was nothing to shave.
(The picture I texted to Knut last April with the question, “Do you know why David has a weird bald spot?”)
(David after we shaved his head about a month ago. His friends think it’s awesome.)
He has lost all the hair on his arms. His eyelashes are thinning and will soon be gone too. He still has most of his eyebrows. He is proving to be in the very, very, very, very small percentage of alopecia patients who lose all the hair on their body. I cannot even begin to explain how watching this has been breaking my mama heart. I don’t even know where to start.
The first 2 doctors we talked with said we could try steroid treatments. However, one of them warned that the steroid treatments would aggravate some of his other medical issues, and the other doctor thought it would be fine. Both agreed he had maybe a 50/50 chance of it helping. There was a good chance they wouldn’t help at all, and just add a bad rash to his bald skin. The treatments were not covered by our insurance and would be hundreds of dollars for each treatment, and he would likely need several.
We decided not to go with the steroid treatments, with the blessing of the doctors.
And then he started to lose his eyelashes. I hit my breaking point.
We found another doctor who is looking at his alopecia from the auto-immune side of things. She knows immune systems, and alopecia is an autoimmune disease. She ran a ton of blood tests, and we learned an awful lot about David. I will not lay out the 34 pages of data we went over in this blood test. I’ll only give the bullet points of the parts that are currently, drastically changing our lives.
David has some major, major food sensitivities. His digestive system (the home of the immune system) is in bad shape, and having trouble absorbing some nutrients, therefore making him severely malnourished in some areas. The worst on this list was “zinc” as it was in the red zone of barely any traces in his system. In the lab report, they listed in zinc deficiency symptoms: “extreme hair loss.”
And we are starting to wonder if we are putting some pieces together. No one really knows much about alopecia. It is not well studied, as most medical studies focus on diseases that, you know, kill kids or cause them extreme pain. That is, in my opinion, as it should be. I like that all the funding goes to those types of illnesses. But it makes finding reliable information and a doctor who knows anything about alopecia hard to come by.
So the plan right now is to remove all the foods aggravating his immune system, get him absorbing nutrients again, and see what happens. Sound like a plan? It’s all we got. He also has to take a crazy amount of supplements now, some of them so specific we needed a prescription to get them. I think he takes more pills than a 70 year old man now.
This doctor thinks that wheat will be the only food he will have to be off of long term. All the other foods on his “bad” list on the blood test will be taken off for 1-3 months as we track his progress. Then one by one, the foods can be re-introduced, and try to build up resistance to them, and we will continue to track his progress.
So for now, he is off of wheat, soy, peanuts, cow-dairy, coconut, (the list was longer, but those are the things that are making the biggest impact). Also, there was a “VL” list of foods that mildly caused problems, and he is restricted to those once a week, the major ones that effect us there are: oats, egg yolks, melons, yeast. Both these lists are quite a bit longer, but I don’t feel like writing out all the foods we don’t eat that now he can’t eat, like pistachios.
This is the only plan we have. I’m thankful for all of this hard data, stack of paperwork about what is going on inside his system. As our new doctor said, let’s just start fixing things we see wrong and see what happens. That’s about the biggest promise we have. I’m thankful she was willing to dig so deep.
We are on Day 4. If I think about how hard this will be for the next few months I’m overwhelmed. So I’m just trying to focus on: what will he eat today? That’s as far as my brain is allowed to go.
So this morning, as I reflect on how we are blessed, I’m so thankful that this disease isn’t killing him. We still have our David. Actually, with this new diet, on day 3 he can sit still at the table at breakfast. This is new. Yes, it is hard, but we still have our kid. He’s still funny and athletic. He is kind and thoughtful. We still have our David.
Second, I’m so thankful for some answers. As hard as those answers are, they are a beautiful thing. There is now some hope that this thing can be overcome. Some might think that hope is dangerous. I am tempted to think that sometimes too. But I’m loving the hope anyway. Hope is just the best thing ever. We will be able to fix some core nutritional things going on, regardless of if we will be able to regrow any hair. That is more important anyway.
I’m so thankful that David’s attitude about this big change has just been jumping right in. My picky eater is adventurously trying new foods, rejoicing in the ones that stayed (like rice and potatoes!) and he is taking this so seriously. That is just a huge blessing! My passionate, tantruming child has not had one breakdown over his new diet. Not one. (I, on the other hand, have had several.)
Through this all, I see God doing some amazing heart-work in our family. There are some personal things God is doing in me, and this refining he’s doing in David as well. Small blessings and heart-conversations with the other kids have been just these little joys along this journey.