Wednesday, June 26, 2013

Update from NY!

We got home 4 days ago, but I am just now sitting down to write. The past few days have been filled with unpacking, research, and more research! What did the Dr. say? Well, here's my attempt to sum up all of the info in some concise bullet points:

1) We won't have the follow up with any of the lab results for a month (except the in-office allergy testing), but from the physical exam and our interview, he concluded that N does have a yeast infection in his digestive system.  He has to be on a low carb/sugar diet along with a prescription anti-fungal and powerful probiotics to kill the bad yeast while replenishing the good flora. The yeast causes the cells of the stomach lining not to adhere as tightly as they should, and so they form pin-hole leaks and leak substances into the rest of his body where they shouldn't be. Thus the slang term "Leaky Gut Syndrome".  Hopefully many of his food sensitivities will be cleared up once his stomach is healed.  Oh-and this was probably caused from the multiple rounds of antibiotics he had as an infant and toddler for chronic ear infections. For some reason, a majority of the kids on the A-list have these ear infections, and so the consequent yeast infection is not uncommon.

2) He also has  a problem synthesizing phenols or salicylates.  This causes his cheeks to be constantly flushed and could be a trigger of his daily, never-goes-away headaches (The yeast infection could be a cause as well.).  We need to put him on a low phenol diet, in which he has very little processed food and plant-based food-especially nuts and veggies! As you can see, this is in direct contrast to the yeast diet which is based on higher intake of veggies! UGH!! What's a Mom to do? Well, thankfully he can eat meat, right?...

3) Well, it turns out he also tested sensitive to beef and pork! AAAAAAHHHH! While we don't eat a lot of pork, the beef is a serious bummer. Thankfully we can buy buffalo (at 12.99/lb!) and free-range chicken that I can grind into sausage. Also Applegate makes an uncured Turkey bacon. Phew!  He can also eat all the salmon he wants, but we have to watch the crab, cod, and halibut because of the mercury levels. Thankfully wild-caught AK seafood tends to have lower levels, but we still have to watch it since most of these kids have an impaired ability to expel environmental toxins. Now you see why I've been having to research my little heart out these past few days! What can I feed this kid???

4) Based on his skin mottling on his arms, and his goose bumpy flesh, the Dr. believes that we will see some sort of metabolic issue show up in the lab work in regards to processing vitamins/minerals/fatty acids, et. Also, he agreed that there is a high likelihood of a thyroid issue because of N's low muscle tone and inability to regulate his body temperature.

5) From the behavioral symptoms of anxiety,fear, and inability to transition, as well as inability to read social cueing and interaction, the Dr. is sure that N's amygdala is out of balance. It is causing him to hyper focus on the fear-based behaviors instead of helping him modulate his overall environment and social situations. To calm this down, many docs prescribe a mild SSRI.  This Dr. prefers a more natural, gentle approach, and so we are trying a nasal spray of oxytocin (the same hormone a woman's body releases after childbirth and during breastfeeding that is calming). It made sense to me and I prefer natural to synthetic when possible.

6)We are also going to try methyl B-12 injections. This will basically give N's system a boost when it comes to being able to recognize and expel environmental toxins and allergens.  We also left with other supplements that mainly focus on the proteins that are needed for neurological development and function. When we get the labs back we will tweak this regiment as needed.

7)Thankfully N tested negative to a mold/mildew allergy since those are so common up here in this rainforest. Hallelujah!

We have one more test to complete here at home and send to the lab, and then after that we will start the meds and supplements. I admit I am cautiously optimistic.  I must say, though, that I was HIGHLY impressed with Bock Integrative's facility and staff. They were all so great and understanding. The building is a full clinic, and it was clean with a welcoming yet professional feel. Everyone there was so wonderful with N, and it was great to be able to sit down with a Dr. for over an hour to discuss N at length-not a 15 min. fly by.  

If you do decide to go there yourself, I would recommend staying in Kingston, the nearby mid-size city. I booked a room at the HoJo in Saugerties, and had to keep paying toll roads to get to the Dr's office and to Kingston where the mall and movie theater is.  Also, rent or bring your TomTom since that area is full of lots of little hamlets and two-lane roads which would be easy to get lost in. For entertainment, there is a 6 Flags park about 2 hours north which made for a great, rewarding day in the midst of long airplaine rides and lab tests. Also, there are tons of great little antique shops, so next time I will definitely be working in an extra day there if possible ;)

Overall, I count this trip as a success. Even if nothing else happens, I found someone who is TRYING to help N and has already identified  many physiological reasons that he  is probably feeling bad without even getting into the lab results or any of the holistic/integrative side of things.  Hopefully all of these different approaches will get his immune system to calm down and his body to balance out to where it needs to be to fully function. While our local Dr. did relent and order some of the labs we needed to help us with costs, she did say that all she recommended for N was to give him the diagnosis "Chronic Daily Headache Syndrome" and to put him back in OT and PT.  ???   That being said I am so thankful for options and that the Lord has provided for us to be able to pursue them.  Hopefully more mainstream physicians will embrace the research and successes these integrative doctors are having so that more children will have access to being healed.

Again, thank you all so much for your prayers and support. I truly cherish you and it helps me immensely to hear those affirming, encouraging words that keep me focused on the end goal and not the oft overwhelming circumstances.



  1. Glad to hear that you are getting answers that will help N heal. What a praise. Hope you find foods that he can have that are satisfying and tasty, and not too expensive. I have a friend who is dealing with food sensitivities and gut issues, basically a body out of equilibrium. Once she healed it got easier to deal with and more foods could be added back into her diet.

  2. Thanks Katie Jo! That's what we're hoping for, too. It's always good to hear of others' successes. :)

  3. All I could think of while reading this was 'Thank God N has the two of you for parents'. You won't quit till you have researched all possibilities. Lucky young man.

  4. Thank you Julie. I remember there was one of those e-cards circulating a while back that said something like "Hell hath no fury like the Mom of a sick kid researching the internet." Thankfully he is able to be reasonable and logical now, so he was so cooperative with being a human pincushion for all of his testing. I can't imagine the parents who are having to deal with all of this with non-verbal or more aggressive kids. Things can always be worse, right?