***Robyn's Note*** For this post, I'm combining two emails I sent to our family and friends and adding the newest information into it. It's taken me a while to post this because it has been so emotional and difficult for me. I am in a better space and place, so don't worry when you read my anguish. My husband's boss often calls to make sure she doesn't need to 'talk him off the ledge.' Many thanks and blessings for my friends and family who bombarded me with emails, calls and encouragement. These lovely folks helped me gain perspective and 'talked me off the ledge'. I debated on leaving some of the most personal pieces in this for the entire world to read--but I know others are in my boat. I pray you'll glean encouragement and always know that I'm praying for you, too!
We first saw the DAN Dr. in March. Before the trip, we did all the blood work that we could get done in advance. After the visit, we did additional blood tests along with urine tests and hair analysis. At the March visit, we started him on weekly allergy shots and added a few dietary supplements. This has already caused some fairly dramatic results in his countenance, demeanor and appetite.
Last week we went for the results of all the testing done after that March visit. This includes all the food panels and amino acid tests and the heavy metals testing. The results point over and over to the same vitamin/mineral deficiencies. The doctor want him on a pretty extensive vitamin treatment.
We're also supposed to add B12 shots that Sean & I will give him at home. Funny thing--in the office, I'm totally confidant and know I will be able to administer these shots at home. Sean is still confidant--but I realize the bulk of this will fall to me as the primary caretaker of the kids and the stay at home mom. So after staring at this needle for a week, I decided I just couldn't stick my baby when it's not life or death. If he needed insulin, I'd be all over this and an expert in mere days. But this is somewhat experimental...it's optional...it might help...it might not help. I couldn't bring myself to buy an orange to practice on. I'm already in charge of medicines and vitamins and therapy at home and therapy at places. I take him to get allergy shots and I don't want to have to go twice a week to the dr. for shots. I don't want to pay the extra money to have it done and I don't want to do it myself. In researching, I'm learning we can most likely get a pill/lozenge to put under the tongue where it dissolves. We'd have to do three a week instead of two shots. I think I'm a lot more ok with that.
Then came the food results. He wants us to totally eliminate a LOT of foods from his diet for the next 10-15 years. The list includes milk, wheat, gluten, strawberries, (coffee--no Starbucks for you, kiddo), yeast, beef and all shellfish plus a lot of other foods. Additionally, he wants us to go on a rotational diet. It's a 4 day diet where you can ONLY eat certain foods for the whole day. I think I took the report in stride. I knew the four day diet would not work in my home, but wanted to think it over before picking a fight with the doctor.
Then we hit the car and started discussing. Sean & I are in almost total disagreement with the doctor. I understand Nathan would feel better if the remaining toxins were purged from his body. But, I have to also think about his life. To remove all of that with absolutely no cheating--ever--means I'd really have to eliminate all birthday party invites, eating out would have to cease and the whole family would have to go on this diet. I don't know how else we could make it work. Every time I think of trying this diet out, I feel sick to my stomach. The doctor is saying it takes 10-15 years for the cells to stop seeing the 'allergen foods' as toxins/allergens. I really feel torn up over this.
After a few tears in the car, Sean made a statement that gives me a little more peace and clarity over the situation. He told me that if Nathan never got one iota better than he is at this exact moment, Sean could live with that. I've mulled that over...and I agree with Sean. I pray for more, but what we've seen is already so awesome! (I've added my favorite summer picture--so far--of Nathan. He's running through the sprinklers. This is the face I think of when I am trying to make these decisions.)
Here's where Robyn is currently at. We're hearing all kinds of 'miracles' from people doing the extensive vitamin therapy. The folks I know who have done these massive diet changes all have kids way higher on the spectrum. They see very dramatic results. I'm now going into my research mode. I have enough contacts to get some good 'mom' information from the been there/done that moms. I want to know their results and how their kids were before and after. I'm going to talk to our 2E consultant in Colorado and get some insight from her and all the patients she deals with. We're starting the vitamin regimen to a point. I'm not going gung ho just yet, but we're increasing the ones we know he needs most.
One of the hardest things for me (and I need to email and ask the dr. this question) is the part on this special diet where you chart every day what he eats and any 'reactions' to the food. Ummm---never knew he had ANY allergies because he shows no symptoms. He has such a high pain tolerance he doesn't really know when he hurts. So what am I looking for?!?! He's never had hives, breathing problems, poop issues or anything that indicates allergies when we give him these foods straight up. The only thing I guessed at was milk and possibly tomatoes (although tomatoes came back as an ok food).
So I think what I'm really asking for at this moment is some prayer support. First off, pray for Nathan and his total healing. I know God is bigger than the word Autism and is bigger than any other thing that is thrown at us (I keep humming the Veggie Tales Song, God is Bigger than the Boogie Man). I also need prayers for wisdom and clarity. If we're supposed to take the diet path, I want God to be exceedingly clear to me so that I know beyond the shadow of a doubt that it's HIS plan. I also ask that his allergy shots do cure all the things they are going after. I want his little body to function in the perfection that God designed for him. When you think of us, please send a little prayer up for us. These trips are physically and emotionally draining for me. I need God's wisdom and clarity because when I think about ignoring the diet, the voice in my head whispers, "good moms do EVERYTHING they can for their boys". I just have to say that for me, it's the straw that feels like it is the one to break the camel's back. I honestly don't know if I could really and truly do it--with no cheating, ever.
The same evening that I sent out the email above, I started receiving an outpouring of support and prayer. The first email was one I needed right at that moment. I was able to see more clearly was when my sweet friend Cheryl emailed me, "One time my ever-wise son-in-law told me that if something comes from God, it's not difficult, because God doesn't try to confuse us....You will know the right thing to do because you'll be at ease with it and the decision will bring you peace, not confusion." Now that makes a lot of sense to me.
Here's the main decision Sean & I made. We want a second opinion. I have a call into our 2E consultant to find out who the Bio-Med DAN Dr. she uses and recommends to her clients.
The other thing Sean & I discussed until midnight was the amount of vitamins we're being told to do. It is truly a massive list. And some of the vitamins are to treat one line item on a sub-test we took. While I see that the result is not right, I'm not convinced each line item needs a pill. Perhaps I want to try vitamin therapy on the big ones and then see down the road if that helps 'fix' these other numbers or not. I guess I want a 2nd opinion on that, too. We agree he needs a solid multi-vitamin formulated for maximum absorption. The B-complex vitamins came up in almost every test and sub test. I'm on-board with those. I will agree to Vit C and Calcium since he doesn't get milk and I have always believed that C isn't really a bad thing to get lots and lots of. However, when I started looking at the RDA vs. Amount To Give--I'm still a little concerned. The RDA for Nathan's age is 25 mg/day. An adult should get 90 mg/day. We're being told to ramp him up to 2000 mg/day. Do the math--it's 80 times the daily recommendation for his age and 22 times the suggested intake of an adult. I know lots of C is good---but is this too much of a good thing?? Beyond that, I'm not sure that I need to force him to take tons and tons of vitamins each day. (Photo represents what I feel like I'd have to shove down his throat each day. There's 22 vitamins/minerals/supplements on the list and several need 4-5 pills to get the amount high enough.)
So we're still searching and praying, but feeling a little better ourselves. As for the diet, I'm putting that on hold for research and a 2nd opinion. The other thing it comes back to is quality of life. I'm did begin contacting sources I have in the gluten-free and restricted diet community. I'm getting their input--but most of them did vitamins for a LONG time before going to dietary changes. I even had the chance to talk to a gal who uses our same DAN doctor. She's been going there for about three years and only started a gluten free diet 8-10 months ago. She refuses to do his rotation diet.
I want to ask more questions of our current doctor about symptoms from the food allergies. I don't see them now so what should I be seeing? If we can't find good documentation to support this diet for his low-level issues, it's a no-go. I'm with those of you who say to start cutting back on things without becoming the 4 day diet food nazi. If he was non-verbal, violent or ill all the time, I'd be all over this diet. But he's highly verbal, high functioning, not violent at all and is rarely sick....so what's the point again?
Thank you for your prayers and support. I'm feeling way more peaceful today! Sorry to create such a lengthy post. A lot goes on during a two hour consultation with a doctor and I'm trying to keep everyone up today. We're holding steady while we get information on a second opinion. That's what I really need. I need to know that another DAN doctor agrees that massive vitamins and diet is really key before I proceed.
I'll keep you posted.