These Days – I’m Blessed

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.

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(The picture I texted to Knut last April with the question, “Do you know why David has a weird bald spot?”)

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(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.

Whew.

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.

Comments

  1. says

    What a great smile he has 😀
    We went through some tough things with my youngest brother, starting when he was born. There are still things we have to deal with, but he takes it like a champ; I think kids are generally stronger than we give them credit for. While we melt down, they just take it as a challenge. Thank goodness, lol.
    Praying for you all as you go through this!

    • Gretchen says

      I really believe that God gave him a very strong will on purpose. When it’s pointed in the right direction, don’t mess with him!

  2. Anne says

    Gretchen,
    As someone who loves your blog, I wish the best for you and David. My husband and I went through some unusual things with our children, and found a few sources that might also help — a book by Dr. Doris Rapp (“Is This Your Child?”) has information about immune system problems in kids. Also, we found that alternative medicine held solutions for our kids when traditional medicine ran out of ideas. I would be happy to point you toward more possibilities if you would like to contact me —
    Sending prayers for you and your family —

    • Gretchen says

      Thank you Anne! The doctor we are currently seeing is a naturapath, one of the first times we have seen one. Our traditional medical doctors just ran out of ideas. I’m glad we decided to go this route, and I was so impressed with her knowledge and professionalism. The traditional medical doctors just didn’t have the diet knowledge that we needed.

  3. Gwen says

    Getting answers of any kind is such a relief. The hardest part of any medical issue is not knowing. Once you start getting some answers, it is such a relief. David and your family have been in my prayers. He is such a handsome, delightful young man and I know he will handle this will grace and dignity. He’s already proving that to you. We pray that all the answers will come so he knows exactly what to avoid, and life can once again be back to “normal” for you.

    • Gretchen says

      I’m hoping one day this all feels normal. People keep telling me it will. Thank you so much for your encouragement, Gwen!

  4. says

    It is amazing how resilient most kids are. What a stressful journey for you all; I am so glad you found a doctor who is willing to push hard for some hope for you.

    • Gretchen says

      I have been resistant for awhile now to head to a naturopath. She was so wonderful, I wonder why I waited.

  5. Annalise says

    Oh Gretchen. I just love how God is blessing you with David’s sweet attitude about all of this. Undoubtedly this will be harder for you than him… But he doesn’t have to do all the cooking and feed all the rest of the family! Praying for you in this transition! When he’s ready for a bit more stuff… I’ve already converted my brownies to gf and they’re as good as the original! 😘 hugs!!

  6. Karen says

    I’m so glad you are finding some answers! The digestive system does far more than we give it credit for. Our family has dealt with food sensitivities for years–celiac disease, food allergies, and now a need for a very limited diet for one of us due to digestive issues. It is very overwhelming at first, but it becomes a fun challenge after a while. I’d be happy to share ideas/recipes if you’d like.

    • Gretchen says

      Thank you so much, Karen! I’m so overwhelmed by all the recipes out there, but I have certainly been asking for help on a meal by meal basis.

  7. jodi/CO says

    Gretchen, I also suffered from a skin disorder that medical doctors could only treat with potent cancer drugs that affected vision, etc., etc. I went to a homeopathic doctor who treated me with remedies that allowed me to tolerate the symptoms and continue my normal life for the most part. She has been a huge blessing to me. That was 18 years ago. I am glad you found a naturopath who is able to help you. It sure made a believer out of me. May there be many blessings that come to you and your family from all this. God hasn’t made a mistake yet. As we continue to offer up our lives with all the twists and turns to Him with thankful hearts He is able to work trough our circumstances to bring blessings to many.

  8. Sharon says

    Your persistence in searching for support and information is productive and David’s response is a blessing. He tugs at my heart.

    I’m reminded of the day (after months of effort) we had removed all red dye and yellow dye from our #1 son’s diet (and the whole family’s – so that I wouldn’t be cooking two entirely different menus) when he was just six.

    His hyperactivity and inability to focus on details and remember information had completely sabotaged his first grade experience and made learning impossible even though he was completely engaged and excited about school.

    We didn’t tell him why we were changing our food although he understood that the neuro-folks at Scripps Institute in LaJolla had recommended it. The day after we started the new diet, the family was driving somewhere and we heard this little voice from the back seat: “Mommy, I don’t feel crazy inside any more.”

    That was all. One quiet little statement informing us of something that felt good to him. It about broke our hearts as we had a little insight into his awareness of the struggle.

    As the docs at Scripps had said, “When something is wrong in the world of the little people, it’s up to the big people to figure out how to help.” Ya dun good, David’s Mom.

    Your persistence and go-git-’em efforts provide about 80% of what he needs to manage well. (My opinion!) Bad stuff happens to everyone sooner or later, and while we hate it when it happens to children they are fully capable of managing that reality and dealing with it in a productive way. Their most significant resource in developing the management skills will be the models of dealing-with-reality which are already present in their lives. You and Knut and David’s grandparents are amazing models by the grace of God.

    Same goes for old people: when Grant was diagnosed with cancer just under 2 years ago and we were told he had 6-9 months to live (he had exactly 4), we spoke from time to time about the blessed memories of watching our parents in the late ’40s and through the ’50s dealing with physical problems, financial losses, family relationship disasters – and remembered in detail their quiet trust. Just continuing a quiet daily life “the same as before” – so we said to one another in late 2013, “…and now it’s our turn….” And so it was.

    David’s life is manifesting the harvest of the good things you’ve invested in his spirit since the day he was born.

    That doesn’t change the bumps and bruises of the process for any of you (some of his older siblings might be worried about him? or worried that they will lose their hair, too?)…no, it doesn’t change that.

    Yesterday my good pastor made the point that “humility and desire are central to the heart of faith” – yes. Yes. Faith does not make the journey unnecessary, but it does make it possible.

    Blessings and hugs to all of you, one by one.

    Sharon

  9. says

    finding a good naturopath is wonderful. I had one in Ottawa ~ was back there last week, asked about an allergic reaction and she nailed it immediately, when biomedical doctor did not even talk to me about it and allergist did not clue in! God bless you in this; hard but so worth it and I pray that your beautiful handsome son will have healing ! God bless you all.

    • Gretchen says

      Thank you so much, Elizabeth! My naturopath says she sees a lot of autoimmune diseases mostly because people get really sick of the “we have no more answers” response. I think it’s a common thing.

  10. Mom says

    I can’t help but think of 2 Corinthians 1:4 – “He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.” NLT

    David is an amazing kid and has such a compassionate heart. Someone down the line is going to benefit from David’s experience and your savvy ingenuity. You have a huge task ahead of you, but you have a very large support group. You are not alone in this! I am excited to see how God is going to work in this situation and we are all wait to celebrate victory as the process succeeds in bringing David back to full health and even healthier than before.

    We all love you, but most of all me!

  11. S.J. says

    Praying for David and your entire family.
    While going generally gluten free did not heal my ADHD son’s severe IBS, (no Chrohns or Celiac). Only the SCD diet gave immediate results. Our son can eat normally now, but is very careful with wheat. He also avoids dairy that contains lactose. All cases are different, From an SCD proponent.
    Love your family blog!
    From a long time reader

    Blessings
    S.J.

    • Gretchen says

      It’s hard figuring it out, right? We have known for quite awhile that he couldn’t handle artificial dyes. Then we realized he was not handling any processed foods, but we weren’t sure what ingredient was continually causing problems. It was so good to take an individual look at what his system is struggling with, so we were no longer going trial and error route. I’m just so relieved.

  12. Angela says

    Keeping you all in my thoughts and prayers! I am so glad you have been able to get some answers and though there will be challenging days, you are never alone!

  13. Penny says

    I will be praying for you and your family. I was very sick, getting progressively worse over several years, and saw all manner of doctors and specialists. Won’t bore you with the long list of symptoms, but they were nasty. Finally a wonderful family practice doctor who also embraces some alternative therapies hit the diagnosis right – celiac, an autoimmune disease. So I am very empathetic to your son, and also how a diagnosis can bring changes to the whole family. Praying he is on the road to much better health and praying for peace for his mama.

    • Gretchen says

      Thank you so much for your prayers and understanding. I’m realizing as we start out in this direction, that there are dozens of people coming alongside us who have already been down this road. And they lived! And they’re thriving! It gives me much hope.

  14. Beth says

    As a longtime reader of your blog and fan of your knitting patterns I felt compelled to pass along my thoughts and well wishes. I will continue to pray for you, Knut and your family for peace and strength as you face this challenge and these changes in your life. Gretchen – when you hit those moments when you’re not feeling as strong as you’d like – remember how many, many people are lifting you up in prayer. You are doing an amazing job!

  15. says

    Wow, that’s a big change! I’m so glad you have answers and they seem to be helping though.

    The food allergy/sensitivity stuff is rough, and takes some adjusting. My 2 year old is gluten, dairy and soy free, and we’re just starting to really settle into it being our normal way of eating now. If you want to chat about meal ideas (or just have someone to vent to about meal planning) you are welcome to email me.

  16. says

    Food issues suck. We too saw huge huge changes, a whole new child (we had behaviour issues) when we found out what the sensitivities were and changed them.

    It’ll get easier! I’m so glad that he’s so motivated as well!

  17. says

    Wow Gretchen: you have learned a lot in a short amount of time. It sounds like you are doing an amazing job of being a strong advocate for your child! Keep up the hard work!

    I would like to encourage you to keep taking those little steps each day. Don’t look too far down the road. Just deal with today!

    I love that the internet(when it works) connects us to other believers from around the world. New friends that can support us with encouragement and prayer!

    Praying that our Great God continues to give you hope!

    Dixie

    ps. came over from the Compel sight

  18. Marie says

    My daughter gets alopecia as soon as gluten hits her system. This awareness took at least a year and no doctors could figure that out. I always heard that “nothing causes alopecia” or “she doesn’t have a problem”. Well, once she was off gluten for a good 3 months, everything started growing back on her head and then came her eyebrows. Finally, after 8 months, arm and leg hair is coming back. I’ll tell ya, if she gets one iota of gluten, the patches come back. Be fastidious about the gluten!

    • Gretchen says

      This is really interesting! Gluten is the most toxic of all the things they tested in him, and when we do start reintroducing foods, they said we will not reintroduce gluten as the numbers were so bad. It nearly stopped all zinc absorption, which I guess is important for hair growth. I really think this is making sense.

  19. Lynnea says

    I stumbled upon your blog today…not exactly sure how…but I can relate to quite a bit of it. I have a son with 2 autoimmune diseases—type1 diabetes & celiac. I was diagnosed with celiac 2 months after he was. It’s been a year of dietary changes. But now I’ve been concerned of some learning/attention struggles. I suspect more is going on in that gut than celiac. I was wondering if you would share the name of your naturopath? I’ve debated for a year to see one…but I’m thinking the time has come.

  20. says

    Praise God that you found a doctor with answers! How I wish we had known about diet and auto-immune disorders when my dad was diagnosed with Lupus, and about the diet, type 2 diabetes and Alzheimer’s connection in time to save my mom.

    You have a beautiful family!

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