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!! 

    Monday, February 6, 2012

    Meeting Dr. Brown ...

    I set up an appointment for later in the day so that Robert could join us, that's Z and me ... to take a peek into that opened door to see the view it offered. Maybe, Dr. Brown will shed some light where it hasn't been shed yet.


    Dr. Brown first introduced himself to us and then took us back to talk with us about Zachary. He 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 be healthy and so that all the fluids and such could flow properly to their destinations with ease. I can not remember everything he said, but this is pretty close. The only difference is he used a lot of big words, that I understood but can't remember.


    He examined Zachary and pointed out the curvature's of Zachary's back not just from the shoulders but from the middle of his back as well. Zachary also tilts his head slightly to one side, I never really even noticed that, but now after it's been pointed out I see it.  After he examined Z he requested to do x-rays on Z's head and neck so that he would have a better view of the upper part of Z's spine. He also wanted to do X-rays that were from the neck down. I had told him that Z just had some like that done and I would go to Vanderbilt and pick those up for him. After the X-rays he wanted time to examine them before going over them with us and asked us to come back the next day. He didn't do any adjustments on Z today because he wanted to examine Z's X-rays and he wanted to see the X-rays that the orthopedist took at Vanderbilt so he could better understand exactly what was going on with Z.


    A Phone Chat with Dr. Jordan

    Pain medication or pain management, please!!
    Let's try the 2 Valium if Z has another episode like that. If it doesn't work we will try something else. I'd like to refer you to the pain management center here at Vanderbilt and let's see what the Chiropractic health, wellness, holistic health specialist has to say. I don't know him or of him if you want you can talk to me about his recommendations ... be careful, go in with an open mind, but be cautious. 


    Medication for Nerve Pain has to be taken everyday ..... I don't think Zachary is at that point yet.

    How much was determined to be attached after the meylogram and at what rate will it continue to attach T1-T8 I don't think it will get bigger it is growing with him as he grows but it isn't as stretchy (example endimetirosis)


    "not good surgical releases for this"  ...... blood vessel specialist, Dr. Singer ... not his area of expertise


    Who could we talk to for a second opinion on the neurosurgery? Remember you told me about a girl who had a similar issue as Z and they were able to repair it and she regained mobility.
    Yes, and the neurosurgeon was very apprehensive about doing the surgery and her case was not as extensive as Zachary's 

    In surgery the risks outweigh the benefits what are the risks?
    Does Z have to lose mobility completely before he will be considered for surgery
    What's involved in the surgery?
    I'm trying to find a neurosurgeon who can help Zachary. Zachary's case is as clear as mud. Let's see if the nerosurgeon can answer these questions for us after meeting and getting to know Zachary's case



    I've emailed spine surgeon at Johns Hopkins and waiting to hear back and paged pediatric surgeon at Vanderbilt also waiting to hear back


    after surgery the same thing can happen

    Is bleeding causing the pain and if so how?
    He tears the lining it bleeds the blood pools at the bottom of his cord it causes inflammation and the inflammation presses against a nerve causing pain ...
    I don't think that this is what's causing his pain right now, I think that he may be growing, let's check his height and weight against his last well child check up and I'd like to schedule an MRI as we planned in the past to compare the difference to his last one. Just to be sure that it is him growing and not something else

    Is the inflammation being caused because new blood is introduced within the spinal fluid
    Old blood may be a part of the inflammation
    Growing or bleeding 

    What's causing the tension? Is it possible that the nerves have stopped growing because of the disorder or maybe something was damaged/severed during the accident.
    The nerves are tethered, tied down, gummed up because of old blood from his injury as he grows they are being pulled on

    If active bleeding is causing pain what can be done to stop the bleeding?
    Would a  removable back-brace of some sort help to minimize the tears that Z keeps producing when active
    Seems Zs pain intensifies when traveling, or is moved ... what can be done to alleviate the pain.

    Research - Medical Articles   Arachnoiditis  when nerve ends are stuck down
    SS

    Sunday, February 5, 2012

    Serious Pain for Most of the Day & Letter to Dr. Jordan



    Pain started during church today (9:30 a.m.), with stomach pain. We gave him a Prilosec to alleviate the tummy pain and then his leg started hurting so we started him off with the TENS and one Benadryl the pain was not letting up so I took him to the foyer so he could stretch out on the couch that was there and I rubbed his leg.  On the way home I gave him another Benadryl because the pain was still not letting up, Robert and I were thinking that the vibration of the car is what might have been irritating his pain further. The pain was still pretty intense and he was moaning quiet a bit. We decided, with hesitancy, to give him one of his Diazepam's (we are aware that this medication can be addictive and are trying our best to only use it when his pain can not be managed) We gave him a whole one as the last time half didn't seem to help much. at about 12:30 p.m. We called in our home teacher, he arrived about 2:30 he and Zachary's dad gave him a blessing. Zachary fell asleep about 5 minutes before the blessing was given. He woke up around 8:00 p.m. and Zachary's pain is about a 4 on a scale of 1 -10 with ten being excruciating. 9:00p.m. came in and complained about his lower back hurting :(

    Right about here, is where it hurts.

    Dr. Jordan,

    Zachary experienced intense pain Friday night and again on Sunday, we used 2 of his Diazepam's because nothing else seemed to work to alleviate the pain and even still it took 45 minutes for it to kick in on Friday and 2 hours for it to kick in on Sunday. Also wanted to make you aware that on Sunday his pain started around 9:30 and lessened for about 40 minutes around 12:30 then it intensified again. This makes us curious as to why it did that. We're concerned that there may be something else going on with Z it is not like him to have pain episodes like these so close together. Last month he only had 1 really bad episode. We are worried and not sure what else we can do. We are also concerned that if this continues this medication is eventually either not going to work or he will get addicted to it.

    For more further details please visit http://hug-z.blogspot.com

    Thank You
    Michelle

    Saturday, February 4, 2012

    A Reply from Dr. Levy & An Almost Pain Free Day

    Ms Huguley,

    The Ferriprox doesn't affect inflammation; it just removes iron. In my discussion with Dr Jordan, I was concerned that the pain was due to active bleeding which Ferriprox wouldn't help that much. Others taking Ferriprox have complained of a little joint pain, but not much. No other side effects.

    Michael Levy

    An almost pain free day, Zachary only had to use the TENS in the morning, pain wasn't bad enough for medication.


    A Letter to Dr. Jordan, Mishap at School and a Letter to Dr. Levy

    Dr. Jordan

    We were disappointed in the orthopedic specialist that you sent us to, he was unprofessional in our opinion. He didn't know why we were there and hadn't even read over our son's file before entering the room. He said he needed X-rays, I tried to tell him that Zachary has had X-rays before but he just blew me off and went ahead with the X-rays anyway, without explanation.
    We are pleased to know that Zachary's spine is healthy, however, we are still wanting to know why Zachary is experiencing mobility issues? Is it the SS that is causing it? The pain? SS? or something else?How can we control the pain better? What's our next step?

    Note: Zachary had only one pain free day in January.

    We were wondering if you could request Zachary's medical records from Texas Children's Hospital (Aug 25 2006) so that they would be together with his files here.

    Thank you for all you do!!
    Michelle Huguley

    Just got a call from the Elementary School, Zachary is soaked! Some kid pushed him into a mud puddle! I had to run over and give him some dry clothes, poor guy! The Principal is taking care of the little bully! Good thing, wouldn't want this momma taking care of him.

    Dr. Levy

    The Ferriprox? What side affects have been documented thus far? Would it control the inflammation?  We just want Zachary to have more pain free days. He only had one pain free day in January, he was so ... happy. We sure would like to see him have more days like that.

    His mobility issues could not be linked to the bones of his spine. What else do you think could be causing this issue?

    Thank you, for allowing me to ask so many questions
    Michelle Huguley

    Friday, February 3, 2012

    Zachary did some PT on an exercise trampoline and walked a block or so to his friends house to spend the night. Intense pain began at around 10:00 pm. His friends' mom called us and brought Z home, we gave Zachary half of one of his prescription pills (Diazepam) after putting the TENS unit on, the ice pack on his back and upper legs and we also rubbed his leg with Anti-flamme cream.


    When we asked Zachary what his pain level was between 1 and 10, with 10 being excruciating, he said it was at a 10. We wanted to see if half of one of the Diazepam pills would help alleviate the pain, we waited half an hour before giving him the second half which was around 11:00 p.m. He was still experiencing pain but not intense. It is now 11:41 and Z says the pain is at a 5

    Thursday, February 2, 2012

    Disappointment ... So, When One Door Closes Another Door Opens

    After getting the results from the Orthopedist we're happy to announce that Z's bones are normal, however, we were disappointed to know that we're still at square one as far as understanding the reasons for Zachary's immobility.


    X-rays coming soon ....








    Now I was taught that, when one door closes another one opens. Sometimes tho ... I see only the closed door with the resultant frustration and unhappiness, but I'm going to move my sight and attention away from the closed door, and turn it to the open one, there's no harm in going over and peeking through to see what opportunities are there, right? 


    On several occasions within a six month period some of the Sisters at our church, have mentioned Dr. Brown's name to us and have told us that they think we should go to see him and hear what he has to say. My first instinct has been, "NO WAY, to twist, turn and pull at Z would be painful and who knows what kind of damage it would inflict". The last thing Zachary needs is more damage.


    Conversation between one of those sisters and Dr. Brown ... January 9 2012


    hi dr brown! i was wondering if you could check this out in some of your down time. i told you about this little boy before, you may remember, things are getting worse for him and i was wondering what you think about it. http://www.facebook.com/l/TAQEGlmZiAQFVPjZ-hfb0jBECg0NpEmNw03YDFaTedjBF5g/hug-z.blogspot.com/
    I just read through the blog and my heart feels the pain this boy must be going through! please let us do everything we can to get a meeting with the parents of Z!!! I will meet with them and discuss the strong possibility that I can help their son! I strongly feel as though I can! In fact I am positive! Obviously this case would take a gentle approach but I could see a straightening of the boys upper neck and especially his low back that can be corrected and would take pressure off the boys spinal cord and the sack! Please lets work together to reach this boy!

    Conversation between the same sister and myself ... January 9th and 10th 2012

    michelle, i sent him your blog link that you sent this morning and this was his reply (below).  i feel strongly, as i did before, that he can help zachary with his pain.  he's not a traditional chiropractor, he's a maximized living chiro (you can look it/him up online if you want).  when i was having those horrible intestinal problems for nearly a year, i saw several doctors and a gi specialist and had a bazillion tests that cost a lot of money.  they never found anything "wrong" and gave me the crap diagnosis of IBS.  i KNEW that i did not have that and that something just wasn't right.  dr brown had been recommended by several people (quite a few are in our ward) and loren started seeing him for his neck problems from our accident.  when he heard about my issues, he really pressed loren to get me in to him.  i went a few weeks later and within a week, all my painful symptoms had completely gone away!  i was and still am amazed that just through having chiropractic adjustments, everything has gone back to normal.  every once in awhile, if i get out of whack (typically with my hip and not good sleeping positions), the intestine starts to show signs of problems, but when i get it adjusted, i am back to normal.  i've learned countless things about the body since seeing him and i think it would be worth your time to take robert and zachary and have a meeting with him.  he is a very passionate and wonderful christian doctor that tells you like it is and does everything in his power to help if you let him. if you'd rather talk to someone other than me...the bishop and his wife, eddie wheeler, llewanne bass and liz austin are a few people from the ward that have been treated by him.  you all remain in our thoughts and prayers!

    What kind of Doctor is he? A Chiropractor?
    I don't know that it would be a good idea to go messing around with Z's spine just yet. They still aren't sure what's causing his mobility issues, besides stretching and pulling can cause Z some serious pain. We're trying to avoid that at all costs. He cant even walk for very long without the pain showing its ugly face. :(

    Yes, a chiropractor. Totally understand the worry, but maybe Something worth looking into. He's willing to meet with you guys to talk, already read your whole blog and saw the x rays on it.  Chiro is more than you might think. I understand your concerns and he's very sensitive as well, but wont sugarcoat things.  Worst case, you can make the decision not to do it, but more info is good, and who knows, could be an answer to prayers.  Just wanted to pass on the information as another option, do as you feel best!  (((((hugs)))))

    Don't get me wrong I have no problem listening to what he has to say, he may see something in Z that the doctors don't. It was a Physical Therapist who pointed out that there was more going on with Z than Hamstring Contractures. Please send me his information and I'll contact him. He has been mentioned to me several times by several different Sisters at various times, I just push the idea aside because my first thought is pulling and tugging cause Z pain 

    Dr dale brown at marathon chiropractic on Wilma Rudolph blvd. 931-591-2010. He's waiting to hear from you and will talk ASAP. Even said he'd do a house call. He's really great. Good luck!!

    So? With curiosity I went to the website and read through some of the information that's provided there. I wanted to find out what it was about this guy that so many from our church are so highly recommending him.  It's very interesting, I like that he teaches seminars and such and he seems to be a little more involved with his patients, but I am still a little apprehensive for two reasons. First being that Dr. Jordan has said that Zachary's nerves at the bottom of his spinal cord are all tethered/attached/gummed up because of old blood pooling in the area at the bottom of his cord. I'm a little frightened about that causing Z some serious pain after being twisted/pulled on/or adjusted and ... Second, I went to a Chiropractor, when I messed up my back in December after working on Christmas lights sitting on the floor and when I went to get up I did something to my back, I was in some pretty terrible pain ... so I went to see if a Chiropractor could fix it up for me. I was in tears when I went  to the office from the pain I was experiencing. I only went twice because I felt like they were just pushing me through, I'd go to the the massage table and then put the TENS on for a bit and then get adjusted, pay and go home. And on top of that I was starting to feel pain up in my shoulders .. I went to fix my lower back and left the second day with my back still sore and now my shoulders were in pain as well. So you can see why I would hesitate .... 


    I know ... when in doubt get on your knees ... 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 and inspiration to move my feet in that direction. He knows what I've been through and He knows what Zachary needs.