Wednesday, November 14, 2012

Dave Hill's Reply .....

Michelle and Robert,

I too have been wondering how Z is getting along.

Further to Dr Levy's comments  not everyone has a loss of hearing as their first symptom of SS.    Some people have quite weird first things, so you should be ready for anything on that 40 plus list.  Also bear in mind that 5% of SS'ers in past medical  research notes do not loose any hearing at all so being set on hearing alone can be a big fall-on.

In other words be ready for absolutely anything.

All the best to the whole family

Dave


In case you're wondering Dave Hill runs an online support group for those who suffer with Superficial Siderosis. He is in contact with people all over the world.
Superficial Siderosis | A site for survivors
superficialsiderosis.wordpress.com/

Tuesday, November 13, 2012

Dr. Levy's Reply .... My Thoughts, and Our Plan of Action

Hello Ms. Huguley,
I'm glad to hear your son's pain is finally controlled. That must be a relief to everyone involved. I will let Dr. Jordan answer your questions below as she knows your son, but I can add my expertise on one of the issues, which is disease progression. Many of my patients accumulate iron for decades before they have symptoms, other have symptoms within a few years. Some patients have iron in their brain discovered incidentally and they have no symptoms! There is no way to predict for your son. Generally, hearing loss is the first sign of superficial siderosis so that's one thing you should be looking out for.
Michael Levy, MD, PhD
Assistant Professor, Johns Hopkins University
Medical Director of General Neurology, Johns Hopkins Hospital
600 N. Wolfe Street
Pathology 509
Baltimore, MD 21287
443-287-4412 phone
443-287-4062 FAX

My thoughts ....
I think it's important for us to try the manual traction apparatus, I mean, what have we got to lose. There is no known cure for Superficial Siderosis and there is no one that we know of that is having the same kind of problems that Z is enduring. This is the only thing that's available to us that gives us hope for Z to regain his mobility. We just can't sit still and wait for this to progress, it wouldn't be right to just sit and watch Z curl up into a ball. He's growing and he's growing fast "his spinal column is increasing and his cord is not increasing at the same rate" the scar tissue and adhesions are now our enemy and we will do whatever we can to defeat them!

Plan of Action:
Visit Dr. Brown two to three times a week. Z will be adjusted twice and will do his warm ups twice while  in Dr. Browns office. He will eat healthy and take Max Recovery so that his body can heal fast from the adjustments. He will do his exercises and stretches twice daily. And be measured for Neural Tension once a month. Zachary will also have his hearing checked to be sure that he is hearing like he should and it will be checked often to watch for the progression of his disorder. Well, there you have it!! 

Saturday, November 10, 2012

Dr. Jordans Response

Dear Mr. and Mrs. Huguley, I am not familiar with Dr. Brown's (your chiopractor's) device. I did google "manual traction apparatus." I see that it is primarily used to treat low back pain and probably works by decreasing pressure on lumbar disks in the spine (outside the spinal fluid, acting on vertebrae and disks between vertebrae). I see no reports of it being used to "break up scar tissue and release dural adhesions" so am just not sure how to advise. I will say that the reason that neurosurgeon's haven't wanted to try to surgically release dural adhesions and scar tissues is that they are afraid of scar tissue reforming and possibly of causing bleeding. That said, this sort of manual traction certainly seems more gentle than surgery and I appreciate your concerns for the future. I would think that if you did manual traction and Zachary had bleeding and inflammation, that his pain would worsen. So, if you decide to try it, I would watch for an increase in pain. I freely admit that Dr. Brown has different expertise than I do. He seems to have done a good job for Zachary where other therapies have failed. It's just tough for me to advise you well, with something so out of my area. Chiopractors are typically very good at improving mobility, and I agree with the thought that "tethering" of his spinal cord by adhesions could be the cause of immobility. I am glad that you contacted me. I have thought of Zachary a number of times recently and wondered how he was doing. Please keep me in the loop. Best wishes. Lori Jordan
I'm waiting on a reply from Dr. Levy as well, remember he is the one who runs the Superficial Siderosis Specialty Clinic at John's Hopkins?

Friday, November 9, 2012

Update on Zachary, Moving Forward and Questions for Dr. Jordan and Dr. Levy

Letter to Dr. Jordan:
Hello Dr. Jordan!
It has been a while since I've communicated with you, but I’d like to update you and I’d like to ask a few questions. Zachary hasn't seen pain since early July. We are very pleased with the work that Dr. Brown has done with Zachary. So far he has taken care of the pain that was caused by the whiplash that Z was suffering from.
Now, we are looking into Zachary’s mobility. The last time, probably around 9 months ago, Z’s neural tension was measured between 24 and 30 degrees. Yesterday, I took Z back over to be measured again, the measurements are between 10 and 20 degrees. I am a bit concerned but not surprised at the difference in the measurements as our goal for the past 9 months has been completely focused on Z’s pain. Now that we have the pain under control I’m wanting to work on regaining Zachary’s mobility. Problem here is that the boy keeps growing, lol. I’ve discussed the mobility issues with Dr. Brown and these are his recommendations and thoughts ....
“The MTA(Manual Traction Apparatus) will help to release dural adhesions and break up scar tissue around the cord. The primary reason for the immobility is the spinal cord adhesions. But the spine is "locking down" because of the immobility, its kinda a catch 22 because immobility causes more spasming and more scar tissue and more adhesions. Now I was thinking that the decreases in Z's range of motion may be due to him growing and that the length of the spinal column increases and the cord length will not increase at the same rate. That may be putting more tension on the cord and nerves”.
Now, of course we have questions:
A good amount of Z’s dura is attached to his cord, with the breaking up of scar tissue and the releasing of the dural adhesions, will this cause bleeding into the spinal fluid and if so how will this affect Z’s condition with SS? Will the side affects of SS (pain, loss of hearing, etc) present themselves sooner?
Are there things I need to be on the look out for?
Z will continue to grow and his mobility will decrease as each year passes, the prognosis is very grim if something isn’t done. I can only imagine our son being pulled into a ball with very little mobility. Our goal is to gain as much mobility as we can, while we can. I know that there is no cure for SS but the fight for our sons mobility is what is on the field right now. We won the fight over the pain now we’re in a new fight to win mobility.
We would appreciate any advice or thoughts that you might have, thank you in advance.
Robert & Michelle Huguley


Thursday, August 2, 2012

Making Sure It's Understood

Dr. Brown diagnosed Z with Whiplash and this had been the root cause of Z's intense pain. Dr. Brown has relieved Zachary of all that pain. X-rays have not be done but I know that the adjustments to our sons neck have made a huge difference in his life. Dr. Brown has cured Zachary of all his pain and as far as I know of the whiplash that Z obtained due to the MVA he was in when he was 4.
As far as the Superficial Siderosis is concerned, that is not cured, as of today there is no known cure for this disorder.
Our next fight now is to regain the mobility that Zachary once had, that is our goal!

Wednesday, August 1, 2012

Published! In the Clarksville Family Magazine

$94,492.49 and For What?  
A 10 Year Old Boys Testimonial Highlights the Problem with America’s Healthcare Crisis
By Michelle Huguley
Zachary(Z), my son, was involved in a motor vehicle accident when he was 4 years old, he suffered a broken leg and a contusion to his forehead. We thought that our son was going to be just fine. Then, three years later he cried out in excruciating pain. This pain can only be described as the kind of pain where you wouldn't care if someone cut off the extremity that was causing the pain. 
We immediately rushed him to the hospital where x-rays were taken. We were sent home with the diagnosis of a possible bone infection, anti-inflammatory medications, pain relievers, the possibility of surgery, and an appointment with an orthopedist for an MRI.  
After numerous visits to multiple doctors, several more x-rays, a CAT scan, and more bills than we care to count. We were told that our son had hamstring contractures, so they sent him to physical therapy for stretching. After no real improvement in Z’s condition, the therapist felt there was more going on with Z. We were sent back to the orthopedist who did more x-rays and ordered another MRI. Hamstring contractures was ruled out!!
He was still taking a lot of anti-inflammatory medications, pain relievers, morphine at times, cream for his leg and a TENS unit when the pain got really bad, we’re talking 10/10 pain, screaming and crying in pain! Z even developed ulcers, surely from all the pain medications he was taking.
We visited a pediatric neurologist who ordered another MRI and a spinal tap because the MRI that was done previously couldn’t be read very well. The results gave us a diagnosis of Superficial Siderosis due to trauma. This was the first documented case of this condition in a child!
As far as Z’s prognosis? There is no known cure and he would ultimately have to suffer with the pain for the rest of his life. In adults this condition causes blindness, hearing loss, and puts most individuals in a wheelchair! 
Even with the growing doctors visits and medical bills, we kept searching.  We visited a neurosurgeon who did a spinal angiogram.  This led to nothing. A CT Myelogram was then done that showed in the lower portion of Z’s spinal cord there was no free flowing spinal fluid. Still the doctors said nothing could be done. Finally we visited one more orthopedist hoping that maybe he could help with Z’s pain. More x-rays were taken of Z’s spine and no answers were given.
Now, after all of these tests and all of the stress of trying to find the cause of Z’s condition we’d only walked away with the diagnosis of Superficial Siderosis and as far as the pain goes we could take him to a pain management clinic and let them teach him to breathe through the pain. Umm? Yea? No, don’t think so. We were desperate to find the root cause of our son’s condition and after all the medical tests; we were still at square one with nothing to help our son get better. 
Now as Z’s mom, I was taught, that when one door closes another one opens. 
On several occasions over a six-month period, some of the Sisters at our church, had mentioned Dr. Dale Brown(a Maximized Living Chiropractor). They told us that they believed we should go to see him and hear what he has to say. My first instinct was, "NO WAY”, to twist, turn and pull at Z would be painful and who knows what kind of damage it would inflict. But my concerned friends persisted. 
I had to find out what it was about this guy that so many from our church would be so highly recommending him. 
But I still had my doubts. So when in doubt get on your knees... and I did! And I asked Him about what to do next and let Him know that I felt like I had done everything that I could, that I didn't know where else to turn and if Dr. Brown was where we needed to be then I asked Him to please give me the courage to move my feet in that direction. God knows what we've been through and He knows what Zachary needs. 
Finally, after 3 years of no answers and no hope from the medical doctors, we took Z to see Dr. Brown. Dr. Brown first talked with us about the spine and the spinal cord and the importance of having a healthy well-adjusted spine “so that the body could heal itself, the way God intended.” WHAT! A doctor referred to God?!! He explained how the alignment of the spine dictates how all the fluids and nerve supply flow properly to their destinations with ease if the spine is in its proper alignment… Hey, this makes sense I thought! For the first time in what seemed like forever, hope began to creep back in!
Dr. Brown examined Z and pointed out some abnormal curvatures of Z’s back. Z’s back was shaped like a C and his head also tilted slightly to one side.  Why had the Orthopedist not noticed this? After he examined Z, he requested to do full spine x-rays so that he would have a better view of the upper part of Z’s spine, specifically his head and neck. Unlike all the other doctors, Dr. Brown never asked where Zachary’s pain was, though Dr. Brown had already read Z’s Blog. Instead, Dr. Brown explained that he would be looking for the cause of the misalignments in Z’s spine and that if he could fix that it would give Z’s body a greater potential to heal. This was completely new but it made the most sense. So we agreed.
When we came back to view Z’s x-rays, Dr. Brown took great detail in explaining how the spine protected the spinal cord and nerves and how the misalignments in Z’s spine would not be allowing Z’s body to heal and function properly.
Within just a few visits we started noticing a difference, and so did Z! Though the adjustments didn't heal Z immediately, we were heading in the right direction.  We brought Z to get adjusted nearly on a daily basis. At times when Z’s pain was so severe we would “campout” in his office for up to 3 hours, sometimes twice a day. Dr. Brown would adjust Z multiple time a day and it was amazing how the adjustments could almost completely stop Z’s pain! Hurray! Something is working!  
One time when Z’s pain was getting really bad I called Dr. Brown on his cell, he had given it to us in case of emergencies. I asked what we could do for Z. He offered to make a house call, I was shocked! Doctors don’t do that anymore! And we live 30 minutes away. This is how I knew we found the right doctor. He cares for his patients enough to go completely out his way to help them.  
Long story short, Z has almost completely recovered and there is no way to explain the joy I have as a mother to see my son be a “regular” boy again!


Sunday, July 1, 2012

The Pain Returns

Zachary saw Dr. Brown just before leaving for Arkansas on the 22nd. We thought that since he had been doing so well that he would be okay for a couple of weeks without an adjustment. Umm? Yeah!! Oh, how wrong we were. Zachary started going down hill on Friday the 29th, my Aunt noticed that the way he walked and the way he carried himself had changed (which is typical of the pain starting to set in). This evening on our way to spend a week in Texas and pick up our four little ones Z's pain kicked in. He wasn't doing well at all and, again, the feelings of helplessness came to revisit me. His pain got up to a 9 or a 10 and he suffered through it for about 6 1/2 hours. Ugh! This is not the kind of memory lane I like going down. The next morning I took him to the nearest Marathon Chiropractor to get an adjustment. I contacted Dr. Brown so that he could inform the doctor there of Z's situation so that he could accurately adjust Z. The doctor was very gentle, so gentle that I worried that he didn't accomplish what needed to be done so that Z wouldn't suffer through the pain again. Z did experience some pain a couple of days later but insisted he wanted to see Dr. Brown. So we did not revisit Dr. Kordic's office.

Lesson 1: Zachary's body took 6 years to get to the state that it's in, a few months isn't going to return him back to normal, remember patience and time are your friends not your enemys.
Lesson 2: Remember to fold Dr. Brown up and put him in Z's pocket when planning another out of state trip, lol, seriously tho .... if it were possible we'd do it!! I think that next time we will go ahead and plan to have appointments set for Zachary to be adjusted while he's away. Something even if it is gentle is better than nothing at all. ;)
Lesson 3: Watch that diet, it makes a bigger difference than we thought.

Friday, June 8, 2012

Cub Scout Day Camp

We sent Zachary to Cub Scout Day Camp, he had a wonderful time and even made a new friend! Completely pain free all week! I don't think anyone can understand the magnitude of emotions that a mother feels when she sees her child who was once unable to even get through one day without pain see him make it through a week without pain. The emotions are seriously overwhelming. Oh and how blessed and grateful we all are. We got to watch him while he enjoyed being the active adventurous 10 year old boy that he is and deserves to be. It was amazing and what an awesome privilege it is to see the Lord work His mighty miracles! I was so pleased to see and watch him I took pictures and video, just so I could remember how happy our boy is now!!

Zachary and Tyler 



 Zachary wanting to give away a "wet hug"

 Zachary trying to be generous and give his brother, Wesley, a hug and Wesley resisting, lol 

Tuesday, May 15, 2012

28 Days!!!

Yes, it's been 28 days! And Zachary wanted me to know that even tho... he had minor pain on two of those days he still considers it 28 days pain free. :D So? By Zachary's request, the title remains!!

Sunday, May 13, 2012

A Grateful Mother's Day!


It's Mother's Day and on this day I often wonder why it is I feel so cheated! Why on this day I miss my mom more then ever and this is the day I will be constantly reminded that she isn't here. But then I realize, I'm good! I've got this! It's no problem!
I go to my computer to go through my pictures because I'm short on hard drive space and I come across the photos of my parents truck after their accident in '06.


Why? Why am I here? I'm not here to feel sad or sorry for myself. I'm not here to try and envision the trauma that they experienced. No?!? 


I'm here because despite all the trauma and all the feelings of loss and despair, I am full of gratitude!!
Surprised? Do you want to know why? Because I have a set of twins who made it out of that accident. Our daughter, Aubrey, came out of it with just a broken clavicle

The only picture I have of Aubrey in her sling. 

and our son, Zachary, who we thought just had a broken leg and a bruise on his forehead, he came out of it alive as well.


He's had some pretty harsh bumps and trials and has endured some pretty rough days in the last three years, but despite that ... he is happy and without pain today.

You know what I'm filled with? Pure GRATITUDE!! My eyes well up with tears looking back and seeing what events have crossed my path and I see .... that I am very blessed!! My parents are gone, this is true, but I get comfort from the fact, that I know, that they are together. I am comforted by the fact that I know without doubt that there is more to this life then just living and that when we have accomplished the things that we need to here, one day my parents and I will be together again. I'm truly blessed as I travel my rocky little winding road, there are some occasional boulders that I must climb and there are those scary cold storms that I must seek shelter from, but despite all those things, I see that I am blessed to have all 7 of my children happy and healthy and a loving husband who stands by me, holds me up and helps me over those boulders and through those storms. I'm blessed with a wonderful family and many many friends who are constantly encouraging me and cheering me on as I navigate myself through this life. 

Zachary has made some huge leaps of his own. 



He spent Friday night and yesterday with his pal! They played and rode on some pretty impressive rides,

and he has felt no pain from it at all!! Oh yes!! I am truly blessed, as is he. I know that my Father in Heaven loves us. I know that He only gives us what He knows we can handle, sometimes pushing us to the very edge where we start to doubt ourselves, but we always make it through.

This Mother's day!! I am filled with gratitude!!

A little note for my Mom ....
I love you, mom!! And miss you more then I can ever express!! Thank you, for teaching me the gospel for teaching me that I am a strong woman and for teaching me that I can climb mountains. Sending hugs your way! I know that they don't have to travel very far to get to you, because I know you are always close by me!!

With Love,
Michelle

Wednesday, May 9, 2012

A Weekend of Play and No Pain!!


Can I just say? Wow!! Our son played hard this last weekend! He played war in the woods with his friend and went swimming. These guys played all day Saturday, and they played hard. In the past this kind of weekend would have ended with his friend leaving and Zachary suffering in severe pain. His friend left and Zachary was ready to play some more. :D
We can not express the feelings we have .. it's very overwhelming!! I love seeing our son be a 10 year old boy without worrying about the consequences after playing hard like he did. Dr. Brown has changed our sons life! We thank the Lord everyday for giving us the courage to talk to Dr. Brown, to just listen to what he had to say. That's all it took! What can I say? All we can do now .. is share the knowledge and testimony we have of eating healthy and taking care of the most important part of our bodies, our spine. No more feelings of helplessness! Whew! And the hope? We've finally got it back!! ;)
As of today Z has been pain free for 22 days!!! That my friends is a long time!! His pain started in June of '09 and was consistent! And now, April 2012 the pain free boy we all know and love is as happy as he deserves to be. ;)

Tuesday, May 1, 2012

An Update on Zachary

It's so exciting to post an update like this one. Zachary is doing so .... well!!! He was pain free for 7 days on my birthday ... and what an awesome gift that was!! My heart is filled with such joy to see our son finally free from the pain that has been debilitating him. He came to me the other day and said with enthusiasm, "Mom?" "I got to play soccer today at school and guess what?" "I didn't hurt". Oh, if you could only know how incredibly rewarding it is to hear our son say those words. Thank you goes to all of our family, friends and acquaintances who have had Zachary in their constant prayers and of course to our new family member (he's been adopted, lol) Dr. Brown, who has made it possible for our sons body to be able to heal as the Lord intended and has taught us that diet is everything!! Without doubt I know that there are reasons for every trial. The lessons learned through this one have been many!! As of today Zachary was pain free for 8 days with a pain level of about 2 or 3 on the 9th day and then pain free again for 6 days, totaling 14 days pain free!! We can't express enough how grateful and happy we all are! My eyes well up with tears when I see our son stand tall without the weight of the world on his shoulders! We are truly blessed!!!

I almost forgot to mention that Zachary used to come to me every morning complaining of stomach ache it's been about a week since his last complaint.

Tuesday, April 24, 2012

Some Good to Report! :D

Wow! How the time flies!! Yesterday I celebrated my?? Ahhh .... who needs numbers anyway? ... My Birthday and I came to the realization that Dr. Brown without even knowing it gave me the most awesome gift ever. Z has been pain free for 7 days. I don't recall him being pain free for that many days in a row. Wow! Oh how blessed our...... ,I was going to say little, but we're certainly not little, family is. lol Zachary is doing so well! We are still in the process of changing our diet, which I'll say again, isn't easy, but I'm told very worth it! Zachary is already careful about his sugar intake, he is learning that sugar causes pain and is learning his limitations. I really do my best to keep the option of sugar out of our home but, again, not an easy task. So today? Is day 8 of no pain!! Keeping my prayers constantly flowing and hoping that one day our son will be pain free without the counting of days.

Wednesday, April 18, 2012

He's Better, Again

Z seemed all better over the weekend but got sick again on Monday. This is so weird .... must be he actually caught a bug this time, anyway we saw Dr. Brown last night Z had some stomach pain and his leg hurt a little but nothing serious. Today he is back in school so I'm thinking it was just a 24 hour bug. He seems to be doing just fine now.

Saturday, April 14, 2012

Back to School

Zachary went to school today, is still a little weak, but we think he's going to be just fine. We saw Dr. Brown this evening and Z's pain level in his leg was a 5 when we went in. Z was so hoping to come out a zero but that was not the case as Dr. Brown did all he could to adjust Z, but unfortunately Z's body or muscles fight it causing his leg to spam. Z's pain lasted about an hour and a half and then he was fine.

Thursday, April 12, 2012

Finally It Let's Up

Zachary is finally able to eat solids and is sitting up. I've given him a bowl of mixed fruits with pineapple, strawberries, red and white grapes. He ate the strawberries and that was it, he seemed to get better as the day went by and he started eating more and more solids. He also slept through the night, whew, that was a rough ride!

Wednesday, April 11, 2012

The Cramping Continues

Z slept when his stomach wasn't cramping. He was able to keep the lemon water down but still had cramping. At one point he was cramping so bad that he stated hyperventilating causing his hands to stiffen up then ..... his leg started to hurt and spasm. He was screaming out in pain, it was very scary. I was, after a long time, back in that seat. You know the one, the one where mom has no power, you know the horrible helpless feeling of a panicked mother? Yup! That's the one. I contacted Dr. Brown to update him on Z and to see if he had any other suggestions. He said to go ahead and bring him in for his adjustment and we would go from there. He suggested ginger root tea, and to continue the lemon water. Z's adjustment didn't get him to a zero today and he was insistent we stay 'til it did, lol. Poor kid! Momma's gotta buckle down and get the diet in order or his healing isn't going to happen as quickly as we'd like. The transition is HUGE!! And they need to be made quickly ... I really don't think this gradual thing is going to work for Z. :(

Tuesday, April 10, 2012

Reaction or Virus?

This morning Z woke up with an upset stomach, nausea and a headache. Three of my children had dental appointments and if you do not cancel with a 48 hour notice they will charge you $50 per child. So I loaded up the the kids, this was to include Z who still was not feeling well, and headed to their appointment. We had to pull over a couple of times so Zachary could throw up outside the vehicle. When we got there I took the two well children in and left Z in the van with a bucket. I explained to the receptionist that Z was really sick and was in the car if they were insistent on him keeping his appointment. I pretty much figured that they would gladly excuse the one throwing his guts up if I had him in the car. I was ready to bring in proof in needed, lol. They said that they would waive the fee for Z and would reschedule his appointment. I went back out to the car and waited while the others saw the dentist and only had to have a short talk with one of them because they were not cooperating. On the way back home and for the rest of the day Z dry heaved ... He could not keep anything down, not even water. I called our family doctor and asked if they could tell if Zachary had a virus or if he was having an allergic reaction. The person on the phone said I would have to bring him in for a diagnosis, so because I am the curious one I took him in. When we got there Z was crying out in pain because of the stomach cramping he was enduring ... when the doctor came in she examined him. Then I asked if she could let me know if this was an allergic reaction to the walnuts he had the night before or if it were a virus. She said she was leaning toward food allergy as Z did not have the common symptoms for the most recent virus going around, but could not verify that it was a food allergy for sure without doing allergy tests on him, in any case, she prescribed him with a shot of Phenergan which is used to relieve the symptoms of allergic reactions and help prevent and control nausea. The doctor also prescribed two other medications, but I do not remember what they were because I didn't even bother to pick them up. My thoughts were that if this one shot could not help Z then I would call Dr. Brown to see what his suggestions would be to help Z, besides that Z's appointment with Dr. Brown was the following day and we weren't going to miss it, because when we do it almost always haunts us later. When we got back home Z was still cramping pretty badly and the pain in his gut was up to a 9 on Z's pain scale. Later that afternoon I shot Dr. Brown a text letting him know that we thought Z might be reacting to the Walnuts from the smoothy he had the day before and I filled him in on Z's condition. Dr. Brown was glad that Z was throwing up, because that was his body's way of getting rid of or fighting off whatever it was. He also mentioned that sugar does lower the immune system so this could be related to all the sugar Z had over the Easter weekend. He suggested that Z sip on water with lemon in it so he would recover.

Monday, April 9, 2012

A Visit With Dr. Brown And A Smoothy

Z was having a rough afternoon, his pain was increasing as the day wore on. We went to his appointment with Dr. Brown and discussed the issues with sugar once again. I know, hand me the Craptacular Mom Card, cause I'm a slow learner. It's Easter, we've never celebrated Easter without sweets. Oh, this thing with Z is seriously going to be life changing isn't it? I don't like the new! The old is way more comfortable and familiar! But unfortunately the old isn't helping Z. So, with hesitancy we move slowly into the new. Z knows he can't have sugar and knows that it causes inflammation which in turn causes him pain. He is aware and he was warned to be careful, however he is still just a child and .... I, yup that's me! I should have managed his sugar intake, therefore, the Craptacular Mom Card belongs to me!! :( After Z's adjustment and while we were still in the office I was talking to another patient about Z and the sugar he consumed and she mentioned that her family celebrates with Resurrection eggs. Instead of candy the story of the Resurrection is printed out and cut into strips and placed in the eggs. When all the eggs are found they piece the Resurrection story together, read and talk about it. Hmmm? I totally like that idea! And what a much better way to remember the reason for this special day. I mean, we could still put treats in their baskets, just "much better for your body" treats. Ugh! Changing traditions, that's new and uncomfortable. Before leaving Dr. Brown mentioned that the yogurt place next door was starting to make "good for ya" smoothies. So he walked us over and introduced us to the, umm? I think it was the owner of the shop and showed Z what things he could put into his smoothy that didn't have sugar in them. Z choose walnuts, strawberries and pineapple. The lady fixed him a protein smoothy with his added ingredients. It was very yummy! On the way home Z complained of an upset stomach and I told him he was hungry for supper. He threw up and started cramping when we got home and couldn't keep anything down, not even water.  

Tuesday, March 27, 2012

Some Pain & A Simple Reminder

After school today Z made a smoothie and then his Grandpa Terry picked him up and took him to a fly fishing event, where Zachary spent a lot of time walking (on concrete) and was offered a soda, which he took the risk of drinking. When he got home his pain was at a 5 then progressed to an 8, his dad gave him a bear hug which did help, the pain lasted for a couple of hours. He was given a Benadryl to help him relax and he finally fell asleep around midnight. We know that it doesn't seem as if Zachary is getting better but in reality he IS doing so much better then he did before we started going to Dr. Browns. His pain does not last near as long and the intensity is not near as high. He doesn't take the Benadryl near as often and he doesn't use the TENS at all anymore. He doesn't scuff his feet when he walks and his posture is much better he is also more aware of his sugar intake, well, most of the time anyway :). He does still suffer with pain as we would expect. It took him all these years to get to here and we are aware that the healing WILL take some time. I am going to keep up with his blog as best I can, because I want his story to be shared! Our son has suffered for not just months but for years with intense unbearable pain. And we have been to several doctors and had many tests done to figure out what has been causing all of his discomfort. We were very disappointed in the orthopedist who should have diagnosed Z with the misalignments in his neck and back. That doctor should have seen it especially with it being so noticeable in the X-rays.  Dr. Brown has done wonders in getting Z's pain down and teaching us how to help reduce Z's pain. Zachary is a much happier boy, and in our book that makes all the difference in the world. Again, the pain is something we deal with quiet often, especially in the summer months which are quickly approaching us. When Z is actively .... running, swimming and trying to be a normal 10 year old boy, that is when the pain returns with a vengeance. We continue to hope and pray that this summer will be different, that this summer Z will be able to have more and more days that are pain free.

Monday, March 26, 2012

The Pain is Getting More Difficult to Wart Off

Zachary woke up to a pain level of 7 this morning, and popping his back seems to be getting more and more difficult. He left for school with the same pain level even after Robert and I had a go of trying the "bear hug" on him. We have been backing off of the Benadryl quite a bit, but today? I just didn't have the heart to send him to school without something to dull the pain.

Sunday, March 25, 2012

The Heavy Load Returns

Zachary had a pain level of zero all through church today. When we got home his pain level got up to a 7. I popped his back, but still the pain persisted. It was a rough night for Z. Anything over a 4 is very uncomfortable and you can see how much pain he's enduring through the expressions on his face.

Thursday, March 15, 2012

Learning About Nutrition

So? Went to the Nutrition class that Dr. Brown had, I took some notes and learned a lot of stuff.

Becoming a Good Shopper
  Take your time
  Don't go hungry
  Schedule shopping
  Come prepared have a list and use it
  Quality should always be your #1 priority
When you eat nutritiously it is less likely that you will have to use medications

Know Your Store
  Stay away from the center of the store

Label Reading Do's ....
  Minimal ingredients
  Natural ingredients
  Buy foods without labels
  If it has a label you better read it!

"If it's not from God, it's not for the Bod"

Valencia Peanut Butter ... has no sugar!! And their peanuts have less mold issues

Label Reading Don't ....
  Don't worry about fat grams, carb grams and calories. The sources of these things is not important. Your     body can more efficiently and effectively digest and absorb naturally occurring foods. DON'T worry about fat grams.

   *Don't buy items with these ingredients
      Monosodium
      Glutamate - also known as MSG
      Hydrolyzed anything
      Autolyzed anything
      Artificial sweeteners
      Hydrogenated or partially hydrogenated anything
      Refined flour
      Additives
      Coloring
      Preservatives
      Chemical names, etc.

Eggs! Find a Farmer!! Free Range (organic)

Jolly Yard Barn (Yoders)

Coconut raises your metabolism - coconut oil is the best to replace canola oil, vegetable oil, and butter

Almond butter and Raw honey can be used as a spread
Olive oil needs to be kept in a dark place

Good sources for food
Tropical Traditions, Garden of Life

Beware of questionable Marketing
  Natural
  Organic
  Made with
  Transfat free
  Fat free or low fat
  Enriched _____ with synthetics
  Natural Flavors
  Endorsements

SOY?!? STAY AWAY?

Most Toxic Ingredients
  Sodium Nitrate, Hydrogenated oils, Excitoxins, Food Dyes, Refined Flours, High fructose corn syrup, Sugar, Pesticides, Additives

The TOP 10 Toxic Foods
  Salad Dressing - make your own
  Candy - lick the habit
  Deli/Packaged Meat - clean sources
  White Bread - whole sprouted
  Sprayed Produce
  Margarine
  Diet Soda
  GMO Foods - genetically modified
  Commercial Dairy
  Seasoned Packaged Foods

Boars Meat is the best meat

Use vinegar or lemon juice to wash vegetables or counter tops
Raw cows milk or raw goats milk, almond milk or coconut milk are better for you
GO ORGANIC!!

Best = Fresh
Next Fresh = Frozen
Least Desirable = Canned
Buy Fresh and in Season!!

Now I'm just bummed cause it seems there's nothing that's good for you on the grocery store shelves. So? basically I've learned .... throw everything you have out except the fruits and vegetables and start fresh with?? Umm? I don't even know, cause everything has sugar, and chemicals and junk that just isn't good for the body in it. Scuffing foot!!

Tuesday, March 13, 2012

Pain After Play

We went to the Science Center on Monday and Casey our 18 year old was Zachary's partner, to keep up with each other they played tag, silly boys! They had a really good time, but now Z has to endure the pain after the play. :( We missed Z's appointment with Dr. Brown on because we spent all day in Nashville. Tuesday when Z saw Dr. Brown he did an adjustment on Z's neck. Where he usually only gets 3 "shots" to the neck this time he got 7 or 8 "shots"(not sure how else to explain this adjustment, lol). He's pretty exhausted today and is resting. I sure hope this summer will be much better than the last one. I worry that with all the activities that Zachary does during the summer we're in for a pretty bumpy ride. Here's praying the Lord has compassion on our 10 year old boy so that he can play, run and swim like one. ; )

Wednesday, March 7, 2012

Can I Just Say? Thank You!!

This past week has been amazing! Zachary still suffers with pain, I won't, in any way, lighten that fact. I will mention, however, the pain does not last 4 to 6 hours anymore and hasn't been up to a 10 on the pain scale in a while. His pain has gotten up to an 8 and lasts only a couple of hours at the most. He has the exercises and the bear hugs that DO help reduce the pain. Oh, how grateful we all are for all the prayers and advice. Thank you all for your support!! Our son is doing so ... well! We are so very pleased with his treatment with Dr. Brown and have HOPE again that he will heal.

Tuesday, February 28, 2012

A Temple Trip to Remember


I don't remember the day very well .. I wished now that I did. I suppose my lack of blogging comes with consequences such as this. I do, however, remember my time in the Temple and I remember it very well. My day started with a personal prayer for the one I would be doing endowments for, then the list of blessings that I'm grateful for, and then ... my plea with my Father in Heaven to give our son a break from all the pain. Zachary had been enduring a lot of intense pain. There were nights I would cry with relief when his body would finally relax enough to fall asleep. There were times I would hold my son and beg my Father in Heaven to please, please help us find the answers we needed to help Zachary get through this burden he was enduring. And then while I sat in the Temple and again poured my heart out to Him I opened the scriptures and as if the words were floating out of the book I read, "And Jesus saith unto him, I will come and heal him" (Matthew 8:7). I sat there ... in shock! Wow! Is this personal revelation or what? Should I scream this experience from the rooftops ... Will it still be valid or would I jinks this? Would people believe me or think I was some sort of loon? I thought that I had posted this wonderful news on FB, hence the reason I did not post it here on my blog, but I am unable to find it anywhere. I want to share this experience with everyone I meet, because "I" have faith that my Father in Heaven WILL follow through. He loves His children and knows their needs and with every "storm" there is clear skies that follow.
I asked Z if he knew the story of Joseph Smith, you know, the one where Joseph's leg had to be operated on without pain medication. Joseph was very courageous and so is Zachary. Zachary was also told, that he is very special to his Father in Heaven and that without him even knowing it, he was serving his Father in Heaven by bringing his "Father's" children closer to Him. Zachary's family and friends have been praying for him, his church family have been praying for him, people who know his family and friends have been praying for him. Z is a part of something HUGE, and his Father in Heaven is very proud of him for helping to bring His children closer to Him if it is just a small prayer to help a young boy who suffers with excruciating pain.

Monday, February 27, 2012

Very Little Pain

Zachary made it through church yesterday with a pain level of 3. And today? Zero!!! All Day!! :D He did complain of stomach pain, but we quickly figured out he was just hungry. His choice of food? A green smoothy! OH, HAPPY DAY!!! :D

Saturday, February 25, 2012

Dr. Brown, Checks In! & What About Natural Sugars?

I received a text from Dr. Brown asking about Zachary and I let him know that Zachary has had an awesome few days, with pain only getting to a 4 or 5, on a pain scale of 1 to 10 with 10 being rip my arms and legs off cause I just don't even care!" This evening is not the case, he has gotten up to a 7. Here's a surprise tho ... I tried the "bear hug" and low and behold it worked!! Whoo Hoo, for me! Oh I mean, Whoo Hoo for Z!! He had a few spasm spells but they have gone and he is sleeping. Please note: He only had one Benadryl and this makes us very happy! We're so glad we aren't having to resort to stronger "meds".
I forgot to mention that Zachary has been taking Vitamin D3 with Probiotics, which strengthens the immune system, enhances digestion and fat metabolism and improves the health of your joints, bones, skin and teeth. And he is taking Wobenzym N, which supports the body's natural inflammation response, increases flexibility and mobility, supports joint and tendon health, and gives temporary relief from aches, pains and muscle soreness due to everyday activity. Zachary has also been drinking green smoothies 1 to 2 times a day. Oh and so have the rest of us. :) We all love them, well, not all of us ... for some reason the teens aren't at all interested, lol, maybe in time they'll come around. :) I asked Dr. Brown about natural sugars as I was advised that sugar causes inflammation. He said, "yes, natural sugar from fruits were alright!" Whew! I was relieved, as that's what helps with the flavor of the smoothies. We've thrown spinach, carrots and broccoli into those things and it's amazing how the fruit covers up those greens. :) This mom loves that her kids are getting their fruits and veggies in! :) Surprised I hadn't jumped on board with the green smoothies sooner, guess the sound and looks of them have played a huge part in my hesitancy in jumping onto the "smoothie train". Thank you, Christie, for encouraging me to suck it up and just get passed the color, they're delicious, and I'm glad I took the leap! Lol

Friday, February 24, 2012

An Impressive Week

This week has been an exceptional one. Z's pain level never went over a 7, which is remarkable! We are so ... pleased with the work that Dr. Brown is doing.

Tuesday, February 21, 2012

Letter To Dr. Jordan

Dr. Jordan
Yes, we were hoping the orthopedist would find something too, We were quiet disappointed that he wasn't prepared, nor did he come through as we had hoped. We figured he would be the one to see the misalignments. We're pleased that you feel that this is working better for Zachary. We're glad that he has seen so many "zero's" (pain scale) in such a short amount of time. This is what we were hoping for. We would still like to have that MRI done in May to see the difference this makes, plus would like to see what affects have been made on that collected fluid at the base of his cord, as we had previously discussed. The Digital Motion X-Ray is only a back up option if Zachary doesn't show any improvement. So far tho ... Z has shown improvement on his posture, he still scuffs his feet but not as badly. And he is already starting to hold his head upright. We pray that this continues to help Z improve but are prepared if it dead ends on us. We want you to know that we are very pleased with all that you have done to help Z and want to continue to work with you as far as Zachary is concerned, we are still concerned about the SS and how Dr. Brown's work will affect it. 
Michelle


Thank you, Mrs. Huguley for the update and for your kind words. I have spoken with neurosurgeons here and at Johns Hopkins. They don't feel Zachary is a good candidate for neurosurgery for his arachnoiditis. They mentioned that a repeat high resolution MRI of the spine would be helpful to them to be definite on the surgical issue. We planned to do a repeat MRI spine and spinal tap with fluoroscopy (like we did last time) this spring for monitoring. I will make sure that this is high resolution. Please let me know the time-frame that you would prefer to having this scheduled. (I am comfortable with March - May, 2012). Thank you. 

Sunday, February 19, 2012

A Rough Day at Church!

Z got up to a 5 while at church today, pretty uncomfortable pain, he ended up laying down in the foyer. :(

Pain at Church

Zachary's pain got up to a 7 at church today ... when it gets this high it is very hard for Zachary to sit up he is more comfortable laying down or curling up somewhere.

Saturday, February 18, 2012

Not so Bad

Zachary's pain level stayed at a zero for most of the day, it started to move up toward the evening but it wasn't to bad at all.

Friday, February 17, 2012

Another Pick Up

Picked up Zachary from school around 12:45 or so because he was experiencing enough pain that he was willing to give up a sleepover with his friend. After picking Z up we went over to my friends house so I could help her out with a photo shoot and her husband helped out by giving Zachary a "bear hug" which brought his pain level back down. I seem to be having trouble with it working, I think I'm nervous about squeezing to much and hurting Z. After the "bear hug" Zachary's pain lingered between a 1 and a 4, which isn't to terribly bad we would rather he be at zero but we're grateful he didn't get past 7.

Thursday, February 16, 2012

De Ja Vu

Shortly after Zachary got home from school we headed out to his appointment with Dr. Brown. He did great! He did all of his warm up exercises and even did all the adjustments without fussing. So his Skylander? He got it back! Who says bribery doesn't work out in the end? Worked pretty well for us, I think. :) As soon as we pulled into our driveway and before even setting foot on solid ground Zachary complained that his leg was hurting and on the scale it was already at a 6. I called the Doctor's office and let them know what was going on and how I was a little worried about the weekend with Dr. Brown being out of town and all and they said we could come back in. Argh! Another trip to town, that's a 35 - 45 minute drive one way, but you know what? If a mother knows that something is working to stop the excruciating pain that is bound to peek around and into the open door, she does whatever it takes to close that door of pain. When we got back to the office, Zachary's pain had gone down to a 4, but I noticed that when he walked it was more of a stagger and he was swaying a bit. Dr. Brown was teaching a class and took a break to adjust Z. It worked!! Or so we thought ... Zachary went down as low as a 2, so Dr. Brown went back to the class he was teaching. I decided we would make sure Z was good to go before leaving and thank goodness I did. His pain jumped to a 10 and it did it pretty fast. We moved into one of the other rooms as Zachary was crying and interrupting the class, well we weren't told that but that's what I figured, lol. Totally understandable. :) Some coconut oil was brought to us and I rubbed Z's back as the pain rose. I wished I had known all this time that rubbing his back was better than rubbing his leg, it makes the intense pain go away much faster. Zachary's "spasms" last about 5 minutes and then he has 3 minutes or so to catch his breathe before they come on again. I can reduce the length of the spasm but I can't stop it. Oh how I wished I could. After about 45 minutes or so Z was ready to go but not without that"bear hug" from Dr. Brown, not sure what the professional term is for that but it's what Z calls it. We left the office at a zero and when we got home he was back to a 4, it went as high as a 6 and shortly after the spasms stopped Z went to sleep.

Here's hoping for a pain free weekend!!

So? This is my interpretation of what's happening .... Zachary's body gets adjusted and then his nerves or muscles, well one of those things start to spasm as to say this isn't where we belong these things have been misplaced and when the adjustment is done they are put back where they belong they don't like it so they fight it. I'm not sure if this is actually what's going on but it is what seems to be going on. I do know that some of Zachary's nerves are "tethered" to the bottom of his spinal cord, whether or not they will stay that way or loosen up? We really don't know. Our desire for our son, is for him to be pain free and this route seems to be getting him more almost pain free days than anything else we've tried plus there are no prescription drugs necessary which makes us very happy.

Wednesday, February 15, 2012

A Little Brib & A Reply From Dr. Jordan

Back to the Chiropractors ... Zachary wasn't feeling it tonight he wasn't interested in doing anything ... I finally did get him to warm up with the help of Dr. Brown
Then when he went in to get adjusted he did fine until the "gun" got pulled out. Oh dear, he wasn't having it. I understand that it hurts him and it leaves an under the skin bruise on him, but this is part of what keeps him on that level of zero. I called Robert and had him come in and talk with Zachary and let him know that he also feels it best that Zachary do this.
So? The bribe that went down yesterday? Umm? Yeah, he lost the Skylander he had just gained. I told him that he had 1 minute to get adjusted with the "gun", I need to find out what that thing is really called. Z calls it "the gun", or he would lose his Skylander and then every minute after that he would lose another one. Well, he lost that Skylander and nearly lost one more. He was not a happy boy at all. But he left pain free.


Dr. Jordan,
We've been seeing Dr. Brown in Clarksville, he is a Maximized Living Chiropractor. Z's Blog has been updated and you can go there to see his findings and recommendations. I'd like to know what you honestly think about this. Thank you! Michelle


Michelle, 
I am not sure that I understand the treatments, but he does seem quite a bit better. I hope this is sustained! I am not a back specialist, but concerns about spinal misalignment were why I sent Zachary to see orthopedics - I was thinking of spondylolisthesis related to his car accident years ago. As we discussed, I don't know of good "traditional" medical options for Zachary so I think this seems reasonable. It is in a sense, what we were hoping to accomplish with physical therapy, though so far, this seems to be working better. I don't know much about Digital Motion X-ray - questions I would ask before doing it are: 1) how much radiation will Zachary receive with this technique 2) how much does it cost 3) Is it covered by insurance at all? 
My best wishes for Zachary. 

Tuesday, February 14, 2012

I Stand Corrected :) & A Bribe

In my post on February 7th I had mentioned the Transverse ligament of the Atlas being torn. I was wrong! lol. It's the alar ligament. If you go back to that blog post I have corrected my mistake.

Note to Dr. Brown: cause I know you're reading this. Please leave a comment if I have made a mistake or confused something. :) I am trying to be as accurate as I can. My intention is to eventually go public with Zachary's story. I'd like for it to be as accurate as I can get it. :) Thanks in advance, Me!

Now then, today Zachary went to school with Zero pain!! :) Whoo Hoo!! Happy Day!!

I'm hoping he will be this way tomorrow too, so I can go to the Temple, which is down in Franklin. I've got a lot of blessings to be thankful for. ;) I worry about being to far from the school. I don't want Z there when his pain is over a 4 or a 5. It's not comfortable and he isn't able to accomplish the tasks that need to be done when he is in pain like that. He goes in to see Dr. Brown again tonight at 4:30

When we went to see Dr. Brown today Zachary didn't want to have anything to do with the "gun" it's a device that he uses to help move the second vertebra back into place and it leaves a little bit of a bruise there. So? A desperate mother wanting her son to endure this little pain that only lasts a few minutes to avoid a six hour chore of intense pain, bribes the wee one with a Skylander (an x-box game character).
Big smiles come and the "shooting" is done. Zachary leaves with pain level at zero and I inform him that this bribe with a new toy will be the last and that he is to do the adjustments because they are working for him and because we feel it is in his best interest to do so.

Dr. Dale Brown: "I have actually be adjusting the 1st vertebra(Atlas vert.) with the "gun"(arthrostim)".

Monday, February 13, 2012

Pain During School & Another Adjustment

I didn't go to the gym this morning as I'm a little nervous about leaving town. I don't want Z stuck at school if his pain escalates. His pain routine is all out of whack and until it is back on some sort of predictable schedule I feel I need to be close by. This morning Z went to school with a benadryl on board because his pain level was at a four. I went to the school around 9:00 because when I called his pain had not changed so I took him another benadryl. At about 12:30 I went back over to the school because his pain had spiked to a 10 and he felt like he needed to throw up. The pain kept fluctuating between 6 and 10.
I text Dr. Brown with this information and asked him if we were in new territory here or do we have a little bit of an idea of how long it will be before Z's zero's can stay zero's all the time. And his response was, " This is all new!! First case with all his specifics. I've seen alar damage a lot but not causing this severe of a case. How long till he is completely healed? God only knows that information. I will keep working on him and adjusting his neck and allow for the body to heal. Healing takes time. We are affecting his body in a good way and we just have to pray that the healing is fast!! I typically expect a 90 day period to really begin to retrain his nervous system and muscles".

We are meeting Dr. Brown at 3:15

By the time we got to the office Z's pain decreased to a 3 and he was comfortable so we waited out in the car until the office opened at 3:45. When we got in Z started warming up. They had a display set up with the chocolate that Dr. Brown shares with Z when he is really hurting. Z wanted to buy some from the display but you have to go online to order it. It's kind of to bad, I would have bought a couple of boxes of that stuff ... Z loves it and it's good for him. I'm trying to introduce good healthy choices for my kids so that we can start eating more healthy. So far green smoothies have been a pretty big hit. Now to get the stuff that's bad for them out of the house and bring in the good stuff. I think it's going to be a lot harder than it sounds. The healthier that Z eats the easier it will be for his body to heal. Zachary went over and got his adjustment. He did pretty good
he doesn't like it when Dr. Brown "shoots his neck". The back of Z's neck is pretty sensitive and it feels like a bruise after Dr. Brown does that.

Picture Coming Soon 

Dr. Brown also uses this traction type device. See? Dr. Brown right here would be a good place for you to leave a comment. You know? Maybe leave the correct name of those tools and what their functions are, so that those who are interested and want to relay this story can have the right information, right? :)  

Picture Coming Soon

As soon as these two maneuvers were accomplished Z's pain went to a zero! Now that's what we like ... instant gratification! After his adjustment Z went to strengthen his muscles. One of the girls (haven't learned their names just yet) from the office came over and said that Dr. Brown wanted to adjust Z again before we left so Z went back over to warm up again. As soon as Dr. Brown walked in to adjust him, Z asked, "you aren't going to shoot my neck again are you?" Dr, Brown laughed and said he needed to have Z stand so he could look at his neck. He talked to Z for just a bit and then said that he thought he'd done enough for today, so Zachary and I left and headed home. Oh yeah! Z left with a pain level of zero! And no pain this evening either! 

Sunday, February 12, 2012

What? Another Good Day? This is Unheard of ....

Zachary's pain level stayed at a zero for most of the day. I couldn't help but to stare at my pain free child today and just take in the moment. It's moments like these I want to always remember. Sometimes we just take these kind of days for granted. He looked like a normal happy 10 year old boy. We don't know what it's like to have one of those ... but no worries!! We have no problem getting used to it! :D Can I just say? I'm so tickled to see Z this way. I agree with what my friend said today, "He doesn't look like the weight of the world is on his shoulders".  Don't get me wrong the past few days have been very good and they do stay at a zero pain level, however, the evenings are not so easy. His pain does get up there pretty high and it still rips away at my heart strings to watch him go through them. We continually pray that Zachary will get through this storm and be able to have more and more pain free moments.

Father? I just want to thank thee for the "zero's", and let thee know that my heart is filled with hope again. I love thee!

Saturday, February 11, 2012

A Good Day!

Z woke up with zero pain today. Whoo Hoo! Tears of joy!! He reluctantly did his exercises today, but he did do them. I think, he thinks .. that he looks silly doing them, but I reassured him looking silly is way better than being in pain.


It's 3:00 p.m. now and still zero pain! This is what I enjoy seeing, fists in the air when I ask, "What's your pain level at ?" :D The Greatest number ever!! Pain kicked in about 10:00 p.m. and lasted for about two hours Z was given a Benadryl to relax him and a dose of NyQuil for that insistent cough that he has.

Friday, February 10, 2012

Keeping Up & More X-rays?

Z's pain level was at a 7 and he walked sort of funny this morning. We gave him a Benadryl in hopes that the pain would decrease enough that he could go to school. We've opted to keep him home today as with this kind of pain he really isn't able to focus... He has been sleeping since 9 a.m. I guess with all the adjusting and pain yesterday his poor body is just exhausted, he's sleeping without moaning so that's good. Oh?!? Wait!! He had Benadryl this morning, no way!! It actually worked!! Amazing! Hopefully when he wakes up he will feel much better. 


Dr. Brown called around 12:15 and wanted to see if Robert and I would be willing to travel to St. Louis, Missouri to see a Dr. Dennis Logan at Clear Institute, because he has a DMX which is a Digital Motion X-ray, a video-based fluoroscopy system. DMX is the next evolution of static X-ray which is coupled with digital and optic technology, allowing clinicians to view the spine and extremity articulations in real time motion at 30 exposures per second. The procedure is performed with the patient standing and actively moving in a weight bearing position within the system. DMX allows clinicians to evaluate all 22 major ligaments of the cervical spine with up to 2,700 X-ray images. The DMX is used to find ligament damage that static films and MRI miss. The DMX is well founded X-ray based on sound scientific principles.


He also wanted to let me know that he may need another X-ray and that he would be consulting with some of his colleagues about Zachary to determine the best plan for him. 


Our appointment is this evening ...... hopefully Z will have the opportunity to learn the exercises. We will see ....


So? This evening Zachary went in to Dr. Brown's with a pain level of 3 so he was able to learn the warm up exercises that he would be doing twice everyday. Once in the morning and once in the evenings. These exercises are to help Z loosen up his joints and to strengthen up his muscles. So that when he is adjusted his spine will stay in place. When Z has his appointments in the evenings he will do these exercises at the office. Dr. Brown calls it Mix, Fix, Set ... the Mix is to loosen up the joints, the Fix is to get adjusted, and the Set is to strengthen the muscles.
Z's Posture
Z without weights
Z with weights


Zachary wasn't in pain he just didn't want to participate in my photos, is all. 

Dr. Brown took another X- ray with Z's chin up as if looking in the sky and the X-ray was taken of his neck to see how the Atlas and the axis was positioned from a top view. When he showed us the X-ray you could see that the Atlas was turned so it wasn't aligned correctly with the axis

X-ray will go here soon as I get a copy :) 

We also learned that Dr. Dennis Logan is an option if Zachary isn't showing some progress. So in short, Dr. Brown is considering back up plans just in case Zachary doesn't show improvement. 


Zachary left Dr. Browns office with a pain level of "0" ... Can I just say? I love to see that number when Zachary holds up both of his fists! It's my most favorite number ever!!! He did have a pretty rough night he wasn't interested in his TENS unit, instead he wanted me to rub his back as Dr. Brown taught me with the coconut oil. In the middle of the night we gave him a Benadryl so he could rest. He can take one Benadryl now and it works just fine, where as before it didn't even affect Z. He would have to take at least two for it to have any effect on him. 

Thursday, February 9, 2012

Serious Pain In The Middle Of The Day

Dr. Brown called to check on Z  to see if he had experienced any pain yet today, so far none. Shortly after talking to Dr. Brown the elementary school called and said that Z was in pain I drove over ready to give him a gentle bear hug. I did that maneuver like three different times and it was not working. I called Dr. Brown back and told him what was going on with Z and he said we could meet him at the office and he would see what he could do. Wait? What? Meet us during the middle of the day? With no questions asked, well he did ask where we lived cause his plan was to come to us ... What? Do you know of any doctors who would go out of their way to do this? I don't!! Anyway, we were there from 1:15 to 3:45 trying to calm Z's pain. It would go away and then come back, just like the day before. Dr. taught me some other techniques to help Z through the pain. On the drive home it was pretty peaceful only a couple of groans came from the back seat. Once I got him in the house I took him upstairs and laid him on my bed he was moaning and crying in pain and had been since this morning I gave him some cough syrup to help with the cough he's picked up and one of his Diazepam's, he had been in pain most of the day and I felt it was time for him to rest. He finally settled down at around around 7:00 or so.

Wednesday, February 8, 2012

A Roller Coaster of Pain

Zachary's teacher put his TENS on right after lunch time at school for him.


Zachary had an appointment with Dr. Brown at 3:45, but the kids got locked out of the house and we had to go back and pick them up. I called the office to let them know that we were going to be late and if we couldn't be seen today, we could reschedule. They said to come on in and not worry about rushing. Huh? Really? There aren't many doctors that will do that. While driving there Z's pain was escalating and got to an 8, the doctor adjusted Z and the pain immediately went down to a 2 we went back to wait so that we could go over the exercises Zachary would do at home and each time before being adjusted. Usually you get adjusted after warming up but because Z was in such pain he got adjusted first thing. While we were waiting Z's pain went back up to a 7 so he got adjusted again and the pain went back down, then we went back out to wait. Again, Z laid on the floor and rested and while doing so his pain went back up to a 7 down to a 5 and then back up to a 9 then back down to a 6. We got here at 4:30 it's 5:30 now Zachary is still laying on the floor. The pain keeps increasing and then decreasing with him just laying here. We stayed until about 6:45 and Dr. Brown taught me how to hug Z to help him when he is in pain, then we headed home ... Z wanted to stop by the church and go to scouts because they are working on their pinewood derby cars, but Z forgot his car and was ready to go home just as quickly as we got there. When we got home Zachary's pain escalated again, I picked him up and tried out the hug technique and what do you know? It worked!! A mother's hug, finally cures the pain ....

Tuesday, February 7, 2012

The Light & A Little Research

Robert and I met at Dr. Brown's, with Zachary so that we could take a look at Z's X-rays. The transverse ligament of the atlas, has been torn, causing him to tilt his head to the side.



The alar ligaments connect the sides of the dens (on the axis, or the second cervical vertebra) to tubercles on the medial side of the occipital condyle. They are short, tough, fibrous cords that attach the skull to C2 vertebra (via the dens) and function to check side-to-side movements of the head when it is turned. The alar ligament is also known as the "check ligament of the odontoid."

The atlas and axis are specialized to allow a greater range of motion than normal vertebrae. They are responsible for the nodding and rotation movements of the head. The atlanto-occipital joint allows the head to nod up and down on the vertebral column. The dens acts as a pivot that allows the atlas and attached head to rotate on the axis, side to side. (wikipedia)

X-rays will be posted here as soon as I get copies:


This injury can and has affected the rest of Z's the spine. 


Whiplash, which is a neck injury that can occur during automobile collisions, when your head suddenly moves backward and then forward or visa versa — similar to the motion of someone cracking a whip. These extreme motions push your neck muscles and ligaments beyond their normal range of motion. Whiplash injuries can be mild or severe. Treatment typically begins with over-the-counter pain relievers and ice applied to the painful neck muscles. If pain persists, prescription medications and physical therapy may be helpful.
Most people recover from whiplash in just a few weeks, but some people with whiplash injuries develop chronic conditions that can be extremely painful and disabling.
Well, there is much more to be said, like Z's spine is locked up, hence the reason for his immobility
Most people find themselves in a Chiropractor's office for relief from pain, often due to the individual segments in the spine (called vertebrae) locking up. Soft tissue swelling and inflammation often accompany this locking up. A doctor of chiropractic is the only professional specifically trained to detect and correct these misalignments. Numerous research studies have shown that chiropractic care is highly effective in the treatment and healing of the various pain syndromes associated with spinal misalignments (spinal subluxations).  In fact, chiropractic is the most effective treatment for back pain.
Your spine is a moveable organ encased in bone. Almost all the nerves of the body pass through your spine, which is made up of many separate vertebrae that are in turn controlled by ligaments and muscles. Because of the arrangement between your spine and your nervous system, seemingly unrelated parts of the body are affected when there are spinal subluxations.  In other words, a subluxation between the shoulders may also, along with pain, affect how you digest.  Restoring a normal alignment or functioning of your spine not only prevents pain but significantly improves the functioning of your entire nervous system. 
 There are three phases of care:
  • The first phase of treatment usually involves getting rid of the pain.
  • The second phase is designed to stabilize and strengthen the weak
    area(s).
  • The third phase is designed to maintain the progress that has been achieved. 
     (info from online resources)

    If you look at the X - rays from a couple of days ago you can see that Z's back actually looks like he might have a small case of scoliosis but he doesn't he said that the curvature is small enough that it wouldn't concern an orthopedist to much.


    How about that? The light has been shed onto something else that even the doctors didn't catch. That's twice or would that be "thrice"? Original Doctor after accident, and two Orthopedist's ... the ones that you would think would catch something like this .... shaking head and thinking about all the $$ thrown away toward folks who should have caught this.  

    Zachary has a lot going on within his small body, and honestly there is so much that I'd like to have Dr Brown give a brief overview of his thoughts and recommendations for Zachary.


    Dr. Dale Brown's thoughts and recommendations:

    Coming Soon!!