March Appt. and Update!

It's been awhile, but we finally had our quarterly appointment today. In the meantime, poor N has been put through another gauntlet of pokes, draws, and samples which we sent off to labs far, far away...Today's appointment was basically to check the labs from January and see where we're at 6 months into treatment.

What we found is:

Stomach: The bacterial infection is better but not gone. Instead of 4 strains of bad bac. showing up, only one did, so he has to go back on a stronger dose of the anti-microbial for a longer period to see if we can git 'r done.  He also is showing no improvement with the good e.coli. He still doesn't show any levels of it. After we finish 3 weeks on the anti-microbial, we'll start a higher dose of the e.coli and hopefully it will take.

Yeast: His levels are back up which is no surprise since we've reintroduced fruit,white rice, gf oats, etc. and I haven't been monitoring the candy and syrup as much. His levels are still 'normal' at a +1, but we're still going to watch it. Dr. Bock doesn't think we need to go fully back on the protocol and meds again, but we are going to be more diligent about spacing out the grains and fruits, and continue w/ Candex (a natual yeast-fighting enzyme) in hopes that we don't need to restart an anti-fungal.

Hypotonia-We are doubling the dosage on his Acetyl L-carnitine and his Ubiquinol in hopes that it will continue to help with his muscle tone. While we have seen some improvement in this area, it's very limited.

His Vit. D was better, but still on the low end of normal. I was encouraged by this. Even though we need to increase his dose,  the levels show that he is absorbing a great deal of his supplements which is great!

Now for the new, interesting developments:

Arsenic.

Yep. While we haven't been eating shellfish and tuna, we have re-introduced white rice which does contain arsenic. While it's an organic (as in naturally occurring, not organically farmed) arsenic and it's the inorganic arsenic that usually causes problems, it shows us that his body is not flushing it out like it should. We know his sulfate and glutathione levels are low (which is why he takes transdermal creams for those), but we are adding in a more concentrated sulfate cream and a Taurine supplement to help boost his metabolic processes to work properly. (You can read about Taurine here).

Also, I've been seeing a smattering of articles relating Vitamin C deficiency to ASD come through my Facebook feed and NIDS forums. When I asked Dr. Bock about this, he said that it wasn't tested for directly in N's case, but if there's a Vit. C problem, it usually shows up in some of the other panels that are run. While he agrees there's definitely benefits to Vitamin C, he doesn't necessarily see a deficiency as a big trigger with my son. So, we'll go ahead and throw one pill in the mix each day as an added immune booster.

Now, lab tests aside, N is wowing us every day! He is learning to snowboard (which requires great balance and coordination) and he is keeping up with the rest of his group and not needing one-on-one teaching!  He is also participating in Tang Soo Do Karate and is getting ready to test for his orange belt in a few weeks. His focus and discipline to be able to do this is astounding considering his past issues in those areas! He is still as sweet and endearing as ever, but is definitely developing a more well-rounded interest in activities and conversations. He is excited to resume Little League next month, and is soaring through a Coding curriculum to learn to program in various computing languages. He completed one year's worth of curric in one semester and has moved on to the next. He definitely gets that from his Daddy, and not me!

We are finishing up our 3rd year of biofeedback therapy. In January, the therapist switched 'targets' and is now using a method that specifically works on him being able to shift his thought patterns so that he is not hyper-focusing. We have seen drastic results. While the data test (yesterday) showed that he still needs a lot of work in this area to cement the pathways, his behaviorial data is fantastic. We are greatly encouraged by this development.

As always, when I write these updates, I am overwhelmed with gratitude for all the Lord has granted us in being able to help our son. Between financial provision, attentive specialists and therapists, and graciously patient snowboarding and karate instructors, I am reminded that this is not a one-person journey. I am confident, however, that N has a wonderful life ahead of him, and that he will be successful, even if challenged, in all that he does because of the support he's receiving now.

Blessings to you all,
Hillary and N

Here we gooooooo!

Hi everyone! By the time you read this (if Blogger cooperates) N and I will be on the plane headed to Red Hook, NY to see Dr. Bock! We are hopeful and optimistic that he will at least help us clarify some of the allergies/thyroid/candida issues that I'm pretty sure we're dealing with.

Unfortunately our hesitantly cooperative pediatrician has become uncooperative and would not order any more of the remaining chem panel tests and thyroid tests (that we could have done locally). sigh. This means that now we will be paying for all of these out of pocket via Dr. Bock whereas our insurance would've paid had she ordered them as our PCM. Oh well, like the big guy said, we mainly needed her for the SPECT scan, and she did do that... We'll just revisit the pediatrician situation when we return next week.

SO! I would really really appreciate your prayers as N's Twin heads off to summer camp for the first time, Little Sister leaves us in Seattle to join up with my sister and her family, and the Big Guy and Baby G. hold down the fort here.  I'm already teary-eyed and so anxious for when we're all back in the same buildling again, but I know that this is all going to be worth it, and it will be wonderful to have some one-on-one time with N. We've looked at the idea of the local petting zoo, tubing down a river, a freshwater beach, and of course Game Stop for him. :)  I will hopefully be writing about good news upon our return.

Until then, I pray you each have a wonderful week full of summer sunshine and equally warm memories.

Blessings,
Hillary

We Are New York Bound!

Just a quick note before my eyeballs pop out of my head! I feel like I have wasted this beautiful, sunny,  Alaskan Spring day on the computer. But in all actuality, it was not a waste; it was a milestone! We got our appointment for June 20th with Dr. Bock, and so spent the remainder of the day making all of the necessary travel arrangements to get me and the boy from Alaska to the East coast. We are so thankful for mileage plans, as well as generous Grandparents and Aunts & Uncles who are encouraging us and blessing our socks off! LOVE THEM!! Plus the timing coincides beautifully with Brent's final days in the CG, and thus, he had no problem getting the time off. He and our younger son will have quality time together while L is at Bible Camp, B is getting to spend a week with her cousins in Oregon, and Nathan and I try to navigate New York.  (Gulp!)  What a summer this is shaping up to be!

Good night and blessings to you and yours. Thank you, again, for your encouragement and support. We are overflowing with grateful hopefulness and awestruck by our Lord's divine planning.

Blessings,
Hillary

April Update Take 2-We're In!!!!!

YES!! Praise God! So, we had a slight change; well, okay a major change! We changed whom we are going to consult with. After reading yet another book (this one titled Healing the New Childhood Epidemics: Autism, ADHD,Asthma, and Allergies by Dr. Kenneth Bock ) I realized that there are other integrative doctors who treat Autism similarly. While they may not do it under the banner of NIDS, they use an integrative approach that combines traditional medical testing and medications with out-of-the box treatments like anti-fungals, dietary needs, specific supplementation, etc. In fact, I had quite a wake-up call because I thought all of the DAN! (Defeat Autism Now!) doctors were naturopaths who did not have access to the traditional testing methods. While many of them are, there is, also, a team of DAN! doctors who are board certified doctors. In this case, Dr. Bock is a board certified Family Practice doc who has morphed into treating the 4A's out of necessity, and uses most of the same methods as Dr. Goldberg and Dr. Russell. While he doesn't require a SPECT scan, he runs extensive bloodwork testing as well as other analysis. We already have the SPECT so that won't hurt anything, and can show him exactly which areas of the brain are inflamed. He's also done a lot of work in honing the thyroid testing of these patients and found that many who test within normal levels with a traditional test will still have a dysfunctioning thyroid by testing each of the 4 thyroid levels separately. I am especially intrigued by this since Nathan has many of the symptoms of hypo-thyroidism and it is prevalent in my side of the family. 

We have prayed for timing and for guidance. Brent and I decided that whoever could get us in first is who we would see. Well, Dr. Bock can schedule an actual appointment for June (once we get our app back in) and Dr. Russell's office is still not accepting new patients (still at #11 to even schedule an appointment).SO, while we are bummed it didn't work out for us to go to a familiar place with family there, N and I are excited to go to New York; a place neither of us have ever been to!  

 The timing and financial side will be more interesting since it will be when Brent is working two jobs (finishing out the USCG and working as Southeast Radar during the height of fishing season), and Dr. Bock doesn't accept insurance. However, we both feel such peace and excitement about this new development that we are trusting God in both areas and just going to plug along unless He shuts a door.

Thank you so much for continuing to pray for, and encourage us on this journey to healing. We are so excited for N and his future!

Blessings,
Hillary