I think we might be getting somewhere!!....FINALLY!!! I started writing this blog update a few weeks ago (but got distracted), so the beginning part of this is my feelings from that time. :-)
Late July/early August, I brought up Benny to our chiropractor while I was there for my appt. He was quite confident that he could help us out with him and told me whenever I was ready, to schedule an appt. I wanted to wait until after Ben's appt. at Mayo, because I honestly thought we'd get somewhere there. After our HUGE letdown, I scheduled the appt. Benny got an adjustment and then I left his whole medical record binder (it's getting so huge) for the Dr. to look though as time allowed. He said it took him 3+ hours, but he read through every single paper and test result and took pages of notes. I was soooo impressed! Justin and I set up a meeting to go over his recommendations. We spent over an hour answering questions about Ben and talking through what he thought would be our next steps. He thought it would be good to test for food sensitivities, gluten/celiac, and heavy metal toxicity. Ben had vials of blood taken, his finger pricked for the celiac/gluten blood spot, and I went home and shaved the bottom half of his head to get enough hair to test for heavy metals. I had mentioned to the chiropractor that Ben had been tested for lead before and it came back normal. Apparently when they just draw blood for those tests, it will only show positive if the exposure had happened in the last week or maybe month. When you test with a hair sample, the exposure time span can go back much further, hence the reason I needed to shave his head.
The results came back fairly quickly and WOWZA, the list was extensive (to me of course. There are many people that of course have it way worse)!! Ben has severe sensitivities to gluten, basil, cayenne pepper, and wild rice. There are others on the list (7), but these are the ones we eat fairly regularly. All severe sensitivity foods are out for 6 months. My first thought was, ok, no gluten, I'll just buy gluten free bread and other items. However, the gluten free bread I bought for Ben contains millet (a common ingredient in gluten free foods) and he has a severe sensitivity to that too (great). So, gluten free bread and many other products are out as well. Side note: I've got to tell you, I'm getting REALLY good at reading labels! :-) The next list was moderate sensitivity. He cannot have any foods on that list for 3-4 months. There are 25 foods on that list, but the ones that we eat most often are: beef (WHAT?!.....good thing our 1/2 steer from last year is almost gone!), blueberries, carrots (he was eating them almost every day for lunch), celery, cocoa (no chocolate for Benny), cumin, spinach, green beans, vanilla, walnuts, whey. Whey. Great. So all dairy is out of his diet now too. There are 56 items on his mild sensitivity list. We eat a good portion of these regularly as well, but these food items are allowed 2x a week. This list is especially hard for me, because many of the foods we would eat instead of some of the severe or moderate ones, is on this list. Take coconut for example. It's on his mild list, but instead of regular all purpose flour, many recipes call for coconut flour. He can only have that every 2x, so it started stressing me out. Right now, I am trying to eliminate all foods from his diet unless they are on his "acceptable" list. Eventually, I might be able to bring them in here or there, but for my sake now, it's easier just to leave them out completely. We are taking clean eating to a whole new level! :-) Thankfully he can still have chicken, turkey, and pork. He has plenty of vegetables to choose from (he loves veggies) and a few fruits. He can also have peanuts too, so lots of peanut butter for protein too. It's definitely a different diet than we are used too and we eat pretty healthy. I joke that this will definitely help me lose that baby weight from Sam!
Right now, Ben's body is basically detoxing. He's agitated and even though he can't tell me, I think his body hurts a little. While reading up on all of this, I read that during his withdrawal he could experience headaches, body aches, fatigue, and sinus discomfort, among other things. He's been wanting to be held and cuddled a lot more (when he's not thrashing about and kicking me) and he's been sleepier. His meltdowns when he gets tired are much worse than before. Justin and I have also noticed that when we go in to change his diaper at night before we go to bed, he gets really upset. He used to just smile at us. We were told it would get worse before it gets better. I'm excited for what these diet changes will do for him.
After 3 months, we can start re-introducing foods on the mild and then moderate lists, one at a time. He is to eat that food all day for 24 hours and watch for any reaction. We were told that it would be very obvious if he had one. If he does, we need to omit that food for another 3 months and then we can test again. We can test a new food every 4 days.
Ben was also tested for chemicals/molds and functional foods and medicinal herbs. We have to watch those as wells, but not as drastic as the food sensitivities. I basically need to make everything homemade and watch labels very carefully.
Ben is also deficient in many minerals and has high levels of aluminum and boron in his system. He's now on 10 different supplements to help balance everything out.
We've now been at this for a little over a month now. I'm still not 100% convinced it's doing anything for Ben, but we're going to keep at it and see where it takes him and us. The medical field has not been able to do much for us, so it's all worth a shot. What's the worst that can happen? Ben gets better?
I met with Ben's neurologist again in November and we're still at the same point with them. He would like Ben to be seen by Fraser Clinic (http://www.fraser.org/) here in MN and to be evaluated through them. They might be able to give us some more answers with dealing with Ben's symptoms while we wait for a diagnosis. As far as that part goes, there still isn't anything else that can be done unless we have the whole exome sequencing. Ben's neurologist suggested at this point that it's ok to just keep waiting. We don't have the full amount of money to cover it and he said the cost should just keep going down. It's incredibly hard to wait. Even though I know that even if we do the test, we still might not have an answer. Ben is rare and we know that. Even with the test, we still know that we need to find strategies for him to be the best he can be. We know that a diagnosis is just that, but I just want to know so I stop feeling so crazy. I want my feelings validated. I want that title so I can start searching for other parents who are dealing with the same thing. It's a super lonely place to be. But alas, we can't, so we are continuing with the diet changes and the supplements. He continues to go to preschool on Tuesday and Thursday mornings to receive his OT, adaptive PE, and speech. I continue to take him to PT every other week and we will now seek an assessment from Fraser.
While there are still days that are tough, I am comforted in knowing that Ben was sent to us for a very special reason. If you've ever seen this kid smile, or felt his warm hugs, you'll understand why I fight so hard for him. It's been a very difficult journey up until this point, and to be completely candid, days where I've cried out, "why me?!". But again, those bright beautiful eyes, that super sweet kid, and his answer of, "MOMMY!", when the question I ask is, "who loves Benny?!", is the only answer I need tonight. God knows exactly what he's doing and we'll continue to trust in Him.
Again, thank you for taking this journey with us or at least hopping on for a short ride.
Until next time -