Tuesday, September 16, 2014

Brag Alert: Major Milestone!

Meet our new Boy Scout!
Cruddy phone pic, but you get the idea!


Two, or even one, year ago, this would not have been possible! Between the diversity of activities, the responsibilities, and the sensory overload, Boy Scouts was not something I would have considered as a healthy choice for N. 

But Now!!! He is so much healthier that he looks forward to the meetings! He memorized his oath, and various pledges in one week to earn his Basic Scout badge. Now he's beginning work on his next badge which requires him to build up to a 4 mile run. He is looking forward to camping out as well as all of the other skills he will be learning, and is in awe of the older Scouts around him that are working on their Eagle Scout badges.

We have decided that this is a perfect opportunity to observe the expected behavior for young men, and to practice those social skills we have been studying. Plus, it's motivating him to develop interests in other areas, areas that do not involve screens or power cords! (Yes!)

He signed himself up to sell popcorn for 2 hours in the foyer of the local department store on Saturday, and is eager to go door-to-door to peddle more. He is becoming increasingly self-sufficient and independent before my eyes. I am so excited for him as he begins to finally navigate this world that has bombarded and overwhelmed him for far too long!

In 3 weeks we head back to New York to visit Dr. Bock. We will find out the results of the labs from August, and hopefully see if we can go from an 'attacking' posture to one of 'healing' and restoration; namely in the area of reintroducing foods and reducing meds. I am hopeful because of the huge behavioral changes that I have witnessed this past year, but I know that we could still have a long road ahead before his immune system is fully healed. Regardless, I will praise the Lord for his blessings right now, and joyfully anticipate the bright future that lies ahead for my sweet N.

Blessings,
Hillary

Tuesday, April 8, 2014

An Encouraging Observation

So the non-encouraging portion of this quick post is that 4/6 of our little family had the stomach flu this past weekend (Daddy and the three olders). Not fun. I am thankful that I appear to be done with cleaning up vomit for awhile.

HOWEVER, the exciting point that I observed was when I came home from church on Sunday. When I had left, N had actually been vomit-free since the morning before and was telling me he felt great. Still,  I left him home and took only his brother with me. After getting home a couple of hours later, I was greeted by a weepy, flushed N who was fighting back tears about his sister watching yet another episode of Murder She Wrote. He wanted to watch one of his shows and was upset that she had started another one. 

I asked him if he was feeling sick? No.
Was he tired? No.

Then I told him to find something to do while waiting his turn. He went and found Scrabble and asked me to play. I told him that we would after I got his brother some lunch and down for a nap. More tears! Ugh! It was as if we had stepped back in time one year. The inflexible, weepy N had re-emerged! I wanted to weep myself, but then the simple truth  dawned on me! With him not being able to keep anything down for 2 days, he hadn't taken any of his meds!  I directed him to do so straight away! Within an hour, he was back to being his newer easy-going, flexible self. Hallelujah!

This was so exciting to me! It was proof, once more, that what we are doing IS making a HUGE difference! As mentioned before, his 'chronic daily headache syndrome' is long gone (take that, Mrs. Pediatrician with her amphetamines!) and his brain is navigating daily life more emotionally secure. His muscle tone and energy level are much improved as well.

Also, because of standardized testing last week, he did not have his neurofeedback session. Two weeks without therapy meant a return to more hyper-focusing and 'scrapbooking' about his current favorite topic, which at this point happens to be HTML coding. Yeah. While not quite as severe as before (he was still able to read my exaggerated eye rolling and big sighs), it was a noticeable difference to when he is regularly having his therapy. According to the computer data, we are making progress, but his brain still has many more front-to-back pathways to make, so it will still be a process there.

In conclusion, I guess one of the best ways to see if something is working is to eliminate it. While I do not think most medical professionals would agree with that statement, it was a good bench test for us!

Blessings,
Hillary At Home

Sunday, March 30, 2014

A Sudden Reminder

This may seem like an odd place to post this, as compared to my other blog site, but I have my reasons. Last week in the Oso Landslides, I lost a friend, and more importantly, one of the most cheerful and encouraging women I know-especially in regards to my journey with N. After my previous posts, she made comments like:


" 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."

and 

" I still say he is the luckiest boy to have you as his mama."

Julie went from being my CCD teacher during childhood, to singing with me in our little church choir, to being a huge support to me in 2006. At that time, I was a married adult and stationed back in my hometown. After the death of 2 loved ones, I was facing the reality of N's official diagnosis on the Autism Spectrum while wrestling postpartum depression and separation from my underway husband. One of my sure fire pick-me-ups was to drag N's 3yo twin and little baby sister to the quilt shop while he was in preschool on the days that I knew Julie was working. She would help me pick out fabric, and entertain said 3yo with fat quarters and bolts of sparkly, fairy-themed cloth.  "You know, Hillary, every little girl should have a quilt with fairy fabric on it." She got to me. I ended up making one for each of my girls. 
What a saleswoman. 

She spoke bluntly but cheerfully. Best of all, she made me laugh. Thankfully, when I moved to Juneau, I was still blessed with her support and wonderful sense of humor via Facebook and Blogspot.  She hugged, laughed, and loved generously, and as a result, she left behind a town in mourning for her and her son who passed with her.

Processing that this name on rosters and articles is truly her has been a hard, surreal struggle for me this week. I see other people writing farewell messages to her on her Facebook wall, but when I try,  I can't. It makes it too real for me to handle. It is still settling in my mind that she has truly passed on.

What has Julie's sudden departure reminded me? Well, two important...no, vital things:

1) No one is guaranteed a slow, aged death. I must make every.moment.count. I must make sure that those who are important to me know the things I want them to know in case I should pass into eternity unexpectedly. And I must make sure that I am ready at all times to meet my Lord and answer for my choices.

2) What is the 'instantaneous legacy' that I wish to leave behind? 
I know the longer, deeper legacy that I am working on building each day. I have goals for my family's faith and relationships, but what about their instinctive thoughts towards me upon hearing my name or seeing my face? Julie's example is that when I first heard of her passing, my reactive thought was that I was losing her joy and encouragement in my life. Joy and encouragement. Those are the first words that I immediately associate with her. What do others, especially my friends and family, associate with my name? This is something I need to keep in the forefront of my mind as I choose my words and actions.

For some reason it is easier for me to write about Julie here on this post than her FB wall. Maybe it's the pictures. Maybe it's because FB reminds me, again, how quickly she left us considering how I had just 'heard' and 'chatted' with her the day before her death. Regardless, I can say here how thankful I am to have had her in my life. I can definitely say that I am praying and heartbroken for her husband and surviving sons and grandchildren who have lost their Mother, Uncle, Grandmother, Wife and home (for her husband). I can not even begin to imagine the nightmare that they are facing. I am desperately praying for the Lord to be real to them and to send them a supernatural peace that passes all earthly understanding. 
That mountain was big. 
My God is bigger.

Blessings,
Hillary



Wednesday, March 5, 2014

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

Friday, October 25, 2013

Big Day Yesterday!

So, in spite of some sadness in our family this week with my Grandmother's passing, there have been a couple of bright spots. First off, yesterday was the first day that N was on his full dose of all of his meds! It's exciting to see what happens. While I keep reminding myself to keep my faith in the Lord rather than meds, I am hopeful for continued improvements! One such improvement that we experienced yesterday was that after 2 years of attempts, we were able to get X-rays of his teeth at his dentist appointment! Woo hoo! Prior to this, his sensory issues created a hyper-sensitive gag reflex and he didn't have the bodily control to be able to tough it out. Yesterday he was able to deal with those uncomfortable bite-wings as well as sit for a full minute with the foamy flouride treatment trays in his mouth without any gagging! Thank you Lord for those rays of hope and sunshine in the midst of still-frustrating days!

On a quick side note, I must say that my other bright spot has been with N's little brother G. At 18 months old now, I can't even begin to express how exciting it is to watch him grow and develop "normally". While he still has a vocabulary limited mostly to food items (Hey, he is my kid after all!), his receptive language is perfect. "Where's your cup?" He finds it and brings it to me. "Bring me a book to read." He does. Balm for my soul. I love watching him play with his cars...really play with them, and not just put them in a neatly organized lineup! He rolls them down his kiddie slide. He runs them over the furniture- and the dog. lol  He crashes them into each other. He calls them "Vroom vrooms". I know it sounds silly to anyone else, but a Mom with an ill child can relate to how exciting these things are. Of course the bittersweet pill is the knowledge that N was incapable of that until he was almost 5. However, I try to push that guilty thought out of my mind and focus on the blessings before me. God IS good. He can be incomprehensible and mysterious, but He is good and He does send us hope, comfort, and resources-even if it seems like a small flicker of a light in the midst of overwhelming darkness.

I pray that you all have a lovely weekend filled with health, peace, and joy!
Blessings,
Hillary




Friday, September 27, 2013

Quick update!

Well, there's been one great development since the last phone appt in July, but that's about all since we have only just now began on the new meds! Grrr. Alaska is one of 7 states that does not allow out-of-state compounding pharmacies to ship into AK. Since some of the meds had to be refrigerated, we were going to have to overnight them to TX and then have willing family re-freeze the ice packs and overnight it to AK. We were looking at $100+ a month in shipping! So, I've spent the past months calling pharmacies all over the state. I would get some lab-tech who would say "Sure, we should be able to do that," but when the Dr. would call in the script, the pharmacist would deny it. Many of the prescriptions are light sensitive and have to be mixed in special labs which we apparently do not have up here. sigh. Add in a 4 hour time difference between AK and the Dr's office in NY, and it made for a very frustrating time.

In one case, I finally gave in, and we went with B-12 (methyl, not cyano) nasal spray instead of the subcutaneous injections. The injections are much more preferable with great results, but we just could not get them filled and sent easily here.  The local compounding pharmacy was willing to order the ingredients for the nasal spray and begin making that here for him, so we took them up on it. He started it last week and has to be on it for a month before we can begin the Namenda (the alzheimers' med).

We also have three more meds that are finally on the way, but the two I'm really excited about are the Namenda and the Mutaflor. When they ran the labs on my boy, they found he had none of the good E.coli in his system and high levels of the bad stuff. So, the Mutaflor is a pure, healthy E.Coli strain to replenish his gut. Also, when I left off last time, I was off to research the Namenda. What I found was so encouraging! They are having huge success with it for  ASD kids-especially where the social skill development is involved. Many parents say that their kids suddenly started to 'click' and 'get it'. They were suddenly able to make friends and navigate social circles. That makes so much sense if it is truly working to reduce the inflammation in those areas of the brain!  It's also a med that's fairly easy to start or stop, meaning there are little side effects.  The biggest problem with it seems to be our good ol' politicized insurance system. Since this is still considered off-label use for ASD, many companies won't cover it. Thankfully ours did since it was going to be $300 for that one med on top of all of the other meds and supplements! Thank you Lord!!

The major development for now is that his headaches are mostly GONE!! Occasionally he'll tell me that they are at a "Level 1" meaning it's a slight headache (versus the "Level 7/8" they used to be at daily!), but it's usually a "Level 0"!   I'm so excited for him! "Chronic Daily Headache Syndrome" my foot! I laugh in the face of it. Muahahahaha

Also, he's been soaking daily in epsom salts (magnesium sulfates) and baking soda, and using a cream to replenish his sulfates so that he can process phenols and salicylates. Thankfully, that seems to be working well. His ruddiness is gone, and his skin just looks healthier. We've been weaning off the daily baths and just using the 1/8 tsp cream and it seems to be working well. If he does have a 'flare up' we just know we may have to use the baths as a treatment. Hopefully once we get his gut balanced and the yeast gone, these sensitivites, along with all of the food allergies, will be healed.

Okay, I'm off to start the day. I pray you each have a wonderful, healthy weekend ahead!
Blessings,
Hillary

Tuesday, July 23, 2013

One Month Update!

Wow! What a month it's been; loads of summer sunshine and healing for my boy. Who could ask for more??

Okay, to start off with, N has made vast improvement on the yeast infection/gut dysbiosis front. He had  'migraine' type symptoms for exactly one week; headache, nausea, light sensitive, weak. To make it worse, it was over 4th of July! Poor baby.  I found via on-line research (and the Dr. confirmed on the phone consult just now) that this is totally typical of the yeast-die off.  On day 8, it was like a switch turned off. The migraine symptoms stopped, and since then his headaches have been barely noticable. He said they feel like they did last fall before we started the NIDS diet. (That was back when he didn't have body awareness and was considered hypo-sensitive to touch and feeling.) Hooray!  Also, to note that all of this die-off happened just by removing all sugars from his diet and from the high powered probiotics that the Dr. put him on. This was before we even started the Nystatin prescription anti-fungal! Now he's been on the Nystatin for 2 weeks as well, and Nathan said he feels like we "...just brought in the tanks to annihilate the yeast." Spoken like a true boy. haha

Another development is that he also said he's seeing better!? He told me that he used to have times when his eyes would get foggy and blurry, but that's not happening any more and his vision is clearer. I asked him why he never told me, and he said he just thought that was normal! Poor guy! Even if we don't make any more 'progress' in healing him, I think that NY trip was worth it just for the headaches and the vision!!

Thankfully, I just got off the phone for our 1 month follow-up appt. with Dr. Compain (Dr. Bock's associate). We went over the myriad of labs that were  collected and the various tweaks we need to make to his meds. Without going into to much private detail, I will gladly share that his gut-flora and bacteria levels were low for the good and high for the bad. Yep, his digestive tract is a mess. Thankfully, we should be able to heal him w/ the probiotics and some anti-microbial prescriptions to kill the bad bac.  His minerals and thyroid tested fine which puzzled me since I thought he sounded so typical of thyroid dysfunction w/ the low muscle tone and fatigue. I was starting to feel confused, but this seems to have been answered by his creatine levels being really low. The symptoms of that? Low muscle tone and fatigue!  The supplements that we've already started should help tremendously with that, so we'll see.

Um, what else? Let's see. Some of his Vitamin levels were low or borderline. His glutathione (which is the body's main anti-oxidant) was low. This is very common w/ a lot of the neuro-spectrum kids.  We will start a prescription cream for that since taking it orally can feed yeast. (To quote my friend "Yeast is evil.")  Also, his sulfate level tested low. Sulfates help the body metabolize (drum roll please) phenols and salicylates!!! Remember how I shared that at his physical exam w/ Dr. Bock, he had told us that he saw evidence of that and how we are supposed to be limiting salicylates? Yep, he was spot-on. While I'm not surprised, it's nice to have it confirmed empirically.

I think that's the bulk of the findings so far. We are still working on getting one of his prescriptions filled since Alaska has special rules for out-of-state compounding pharmacies mailing in. We are still working on finding a place in-state that can fill one that should be an injection. If we can't do that, then the 2nd best option is a nasal spray, but the sub-cutaneous injection is definitely preferable.

One other thing that the Dr. mentioned is introducing Namenda in a month or so (after he's been at the full dose of his other scripts for about a month). It's a medicine that is mainly used for alzheimers patients because it reduces brain inflammation. That would make sense as to why they've been having great results with it for spectrum kids the past few years! Since it's going to be used for 'off-label use', I have to sign a consent before he can order it. So, now I'm off to go research and pray about this new option.  Thank you, Lord (and Al Gore) for the internet! ;)

Blessings,
Hillary and N