Thursday, March 5, 2015

Some of the BEST news!

I am crying happy tears right now! I just got off of the phone for our quarterly phone appointment with Dr. Bock. Guess what?! N is responding so well to treatment, that we are switching to 6 month appointments AND we don't have to travel to New York anymore!!!! We just have to have his labs done and a physical by his local pediatrician! I am so so happy, relieved, excited, thrilled, and grateful. This must be what 'exuberant' feels like! Hallelujah!  

Monday, January 19, 2015

Onwards and Upwards!

 
Made it up to the cabin!


What an exciting, momentous, heart-wrenching weekend this is for N's Momma! He is on his first campout withOUT Daddy! Not only that, it is a 2 niter, and it was a 2 mile/3.5 hr. hike up an icy mountain in freezing rain to get there! He packed a backpack up for the first time, and Dad said that he was such a trooper. He had problems with his grippers breaking off of his boots in the icy patches (apparently we need a serious upgrade for him in that department!), but he kept on a' trudgin. I am extremely thankful, proud, and worried about him!



My friend asked if I was concerned about any new knowledge he would come back with considering that he is surrounded by middle and high school guys. My answer? Oh yes; especially considering he is still so loveably naive and  his logic is very black and white. His Dad gets irritated when I make the comparison, but my sweet boy has a similar personality to the character of Forrest Gump. Or for those Eleanor Porter fans, he is my "Just David". He is so sweet and compassionate. While I do not want him to ever ever lose that, I realize that to survive this sinful world, he will need to become a bit more thick skinned and jaded. So, yes, I'm concerned, but yet, I feel like this could very well be the social skills boot camp that my boy needs.

He will be back home tonight, and I am anxious to hear all that has expired these past 3 days. What a difference 2 years of proper treatment makes! 
Thank you, Jesus!

Blessings,
Hillary

Thursday, October 30, 2014

A Brief Summary of the Past Year


Since I have posted about N's rapid healing progress in a couple of NIDS/Bio-med forums I am in, I have received several requests for a summary of what his treatment was. In answer to that, I'm just posting it here so that I can 1) target multiple requests at once, and 2) continue to share what is working for us in the hopes it may work for other families! Below is a listing of what his sypmptoms were, followed by a list of the actual physical triggers, followed by his treatment plan under Dr. Bock. Again, I share this information with the aim that we can serve as a source of encouragment, hope, and possible answers to other families who have a member(s) on the 'A-List'.

Symptoms:

*Very delayed speech (echolalia only until about age 4) with very little receptive language.

*Hyper-sensitive hearing which led togeneral sensory defensiveness

*Hypo-senstitive touch (like he was wearing a snow suit all of the time)

*Very low muscle tone and easily fatigued

*Inflexibility in regards to daily activities and desires (extreme tantruming), as well as anxiety and hyper focusing on select topics.

*Unable to recognize social cueing

*Daily headaches (He didn't realize he had them until we made dietary changes while waiting for first Dr. appointment! Suddenly he was aware that this was not a typical feeling for everyone!)

*Spatial planning-not recognizing peoples' personal space, or his own in regards to bodily cavities. This led to him 'food stuffing' in his mouth, overeating in his stomach, and not recognizing a full bladder.

*Chronic ear infections from 0-2yrs (stopped once PE tubes were put in)

*Fine and gross motor incoordination

Physical ailments that were revealed from labwork in 2013:

*Sensitivity to gluten, dairy, corn, beef, and pork

*Not properly processing Salicylates

*Overactive amygdala (leading to more inflexibility, anxiety, and hyper-focus)

*Bacterial infection in his stomach (It is our opinion that this bacterial infection and the yeast overgrowth, listed below, are probably the two main causes of this whole mess. He was put on multiple rounds of antibiotics for his infant ear infections, and given oral steroids for severe croup. It was following these interventions that he started to fall behind in achieving milestones and exhibit behaviorial changes.)

*Yeast Overgrowth (Again, probably as a result of the oral steroids and antibiotics.)

*No traces of good E.Coli bacteria in his stomach

*Borderline hypo-thyroidism

*Bodily 'detox' and metabolic systems out of balance and not functioning properly to naturally rid body of environmental contaminants.

*According to the SPECT scan, he had a slight profusion in his brain (caused by the inflammation of inflamed immune tissues). It was a flat horizontal profusion that started in the frontal lobes above his eyebrows and extended back near his ears.

Treatments:

*Glutiathione NAC cream to help body in detoxing of environmental aggravants
(Important! He had to use a compounded cream instead of pills since Candida in the digestive tract can feed off of the pills!) He is also taking a Methyl B-12 nasal spray to help with this as well. The transdermal (a.k.a. 'shots') method is preferable, but we were unable to get those compounded up here, so we use the nasal spray instead.

*Magnesium Sulfate Cream to help with processing of salicylates. Also had to reduce the intake of artificial dyes, nuts, and coconut products which are high in salicylates. Initially he was taking daily epsom salt baths as well, but has phased these out.

*Various vitamin and mineral supplements that his labs showed a malabsorption of ,i.e. Vit. K, Vit. D, Acetyl L-Carnitine, Ubiquinol, Iodine, Omega 3, Taurine, etc. (due to his digestive tract infections).

*High powered probiotics to re-balance his gut cultures.

*Nystatin for the Candida overgrowth. After he was showed significant improvement with that, we switched to Candex and then off of the anti-fungals entirely.

*Biocidin for the bacterial infection.

*Mutaflor to replenish his good E.Coli

*Instead of using an SSRI to calm his overactive amygdala, we tried an oxytocin nasal spray. It has worked beautifully without any of the side affects of the SSRIs.

*Namenda to calm the neuro inflammation.

*Low does of Armour for thyroid.

So far, so great!

After his appointment last month, in which we reviewed his labs from August, we found that the stomach infection is gone! The yeast infection is gone! Thus, many of his supplements were reduced or eliminated after seeing levels that indicated his body was digesting and absorbing them properly. He is off of the Nystatin, Mutaflor, Biocidin, and reduced probiotics.

He tested clear for beef, pork, and corn!


His daily headaches were reduced once we started the anti-yeast regiment, and then fully went away once we had implemented the Namenda for the neuro inflammation!

His muscle tone since starting the Armour is improved greatly, and we have reduced that dosage!

His flushed ruddy skin tone has gone away. He now has a beautiful ivory comlexion.

He has increased focus, better motor control, and more is more aware of the people around him. His brain is finally healthy enough to be able to learn all of those social thinking skills that he needs to navigate society. 

We see that his metabolic and detox systems are improved but not fully healed. Since his yeast overgrowth is gone, we can now put him on NAC pills which we hope will give us better results than the cream in that area. He is still taking the Oxytocin and B-12 nasal spray until we see that those systems are healed.

He just feels better! He confided that he used to have stomach aches and have problems passing stools until recently. Just like with the headaches, he didn't realize that wasn't typical for everyone. He has felt those pains for so long that he didn't realize it was a problem until it went away and he felt so much better! Wow! That right realization right there makes all of the cost, travel, and medicine juggling worth it!! We will just keep plugging away at the other areas in need of further treatment, until his immune system is fully restored and he no longer needs medical intervention.

I am so thankful for N's progress. I pray that this will help others the way I have been helped in the bio-med blogosphere. If I had followed N's pediatrician's recommendations, he would be on amphetamines for daily headaches, unable to eat many of the foods he can now eat, and be in therapy forever. Now I foresee a much brighter and 'normal' future for him. In fact, he is now in Boy Scouts so that he can learn lifeskills to help him be a well-rounded man someday. Wow! Such progress in such a short time! Thank you, Lord!

Monday, October 6, 2014

NY Appt. 2014 Quick Update!



This is a super quick update since I hate typing on my phone. This morning was a fantastic appointment with excellent progress made! For my thumbs' sake, I'm just going to list it out as bullet points:

*Dr. Bock was extremely pleased with N's skin appearance and increased muscle tone. At last year's appt, my ruddy faced boy lounged like a noodle on the sofa. This year, my fair skinned son sat next to me at the desk facing the Dr.and actively participating in the discussion.

*Labs came back with better than expected results! While his metabolic/detoxification levels still came back slightly low (but still improved), his digestive and inflammation numbers were perfect! We will be removing many supplements and some meds because it appears that his stomach is finally healed and processing food properly! Hallelujah!

*Given the good test levels, N asked for a repeat tests for the beef, pork, and corn sensitivities. Dr. Bock agreed that it was in order, and sure enough, they all came back completely clear! WOOOO HOOOOOO!!! There was much rejoicing in the little room-especially as contrasted with last year when I was on the verge of frustrated sobbing! We will gradually reintroduce the foods alongside with gradually altering his meds. If all goes well, we may attempt to reintroduce gluten and casein.

*We will continue many of his meds as his immune system continues to rebalance and heal, but we are SO excited at the rapid progress being made! We give God all of the glory for this beautiful turn of events, and I give my deepest gratitude to those who have faithfully carried N to Him in prayer while speaking encouragement and wisdom over me. Thank you!

Blessings, 
Hillary and N


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