Sheesh!

Got a call from the school Zachary is experiencing pain. He's crying and in the office. What the crap!! He hasn't had pain during school in a long time. Weird! Took his TENS to him and gave him a Benadryl. He's resting now.

Word from John's Hopkins

I will do my best to relay the information I received today from Dr. Jordan. There are three layers to the lining of the sac that incases the spinal cord and the brain. The thinnest layer called, the Arachnoid layer is the layer that is adhered to Z's spinal cord, it is a very small adhesion (not as bad as we had originally thought) and this layer is thin like a piece of tissue paper. Also, there are nerves that are pushed up against the cord. 

It is thought that this layer also has a small tear allowing clear fluid to leak into the subdural space. This ... is what they believe is causing the inflammation which causes Z's pain. If this tear were in the dura itself it could be repaired, but because it is in the subdural it is not in a fixable place.

Dr. Jordan feels that there has to be something that can be done to manage Z's pain better. She wants to have another MRI and spinal tap done to see if there are any other ongoing issues and to see if this is calming down. His last MRI was in August. As long as Z isn't getting any worse she would like to see him again in February or March. In the mean time she is going to find out what she can from other doctors who specialize in the spine to see what else can be done. She doesn't think that this small section that is adhered to Z's spine is the only thing causing his immobility. The immobility that Z has is very close to a rheumatoid disorder called ankylosing spondylitis, 

she isn't saying that Z has this disorder just that he has some of the symptoms of this disorder and Dr. Jordan wants to find a specialist to see if they can help Zachary with his mobility.

What Is Ankylosing Spondylitis?

Edited by Guy Slowik MD FRCS. Last updated on June 28th 2011

Ankylosing spondylitis is a form of arthritis that primarily affects the spine. Spondylitis is an inflammation of the vertebrae, which are the building blocks of the spine.

• Spondylos is the Greek word for vertebra
• Ankylosing, from another Greek word, agkylosis, means causing stiffness and immobility of a joint

Inflammation is the body's response to a variety of causes of irritation or injury. In this disease, the inflammation causes:

• Swelling
• Stiffness in the joint between the pelvic bones (the ilium) and the wedge-shaped bone at the base of the spine (the sacrum)
• Pain
• Difficulty moving

Ankylosing spondylitis also can cause inflammation of the eyes, lungs, and heart valves.

Here is how ankylosing spondylitis progresses in the body:

• Ankylosing spondylitis causes inflammation of the ligaments and tendons where they connect the vertebrae.
• This inflammation causes some damage to the bone, and the body heals this damage by growing new bone.
• This bony growth replaces the elastic soft tissue and can fuse the joints of the vertebrae.
• This fusion causes further stiffness and pain.
• Stiffness and pain usually begins in the pelvis and near the base of the spine and progresses upward through the back to the neck.
• It can also affect the hips and shoulders, the other larger joints of the arms and legs, and the heels.

Ankylosing spondylitis is a relatively uncommon disease that usually strikes in the late teens and early adulthood. It can be mild or somewhat severe. Early diagnosis and treatment can control the pain and stiffness and reduce the possibility of major disability.

Again, Dr. Jordan isn't saying that Zachary has this disorder just that he exhibits some of the symptoms, and will be talking to her colleagues to see what our next step will be.

How Often?

Zachary uses his TENS about 4 or 5 times a week in the evenings and usually on Sunday after an active Saturday. He takes a Benadryl when as soon as the pain hits, in hopes that it doesn't become unmanageable

Home Therapy

Zachary's therapist thinks that if Z does his exercises at home everyday he won't have to go back to therapy. So? We'll give 'er a try!

Figuring out the Tummy Troubles

Zachary and I made our way down to Dr. Kelly Thomsen, who is a gasto doctor. She said that Zachary seems to have some constipation and thinks that he may have some irritation due to possible peptic ulcers she has prescribed Miralax and Prilosec. If he continues to have problems she wants me to bring him back to see her.

A Letter Sent and a Blessing in The Making

Zachary's teacher called me yesterday and asked if his class could do a service project to help cover some of Z's medical expenses ... This letter came home today.

4th grade always does a service project during December instead of exchanging gifts within the classroom between students. Therefore, you will not need to buy a gift for a student in our class. However, we are collecting donations for a special cause for this year's project. We are collecting money for a student in Fourth Grade with Superficial Siderosis, a painful and rare condition caused by damage to the spinal cord. This student is the only known child case with SS. As you can imagine medical bills are mounting for the child's family (he has six siblings) We will be taking donations from now until Dec 22. Teachers will ensure that the money gets to the proper place. You can read more about this child at the following web address: 

http://www.hug-z.blogspot.com/ 

I just want to say ... with prayer comes answers, He knows our needs and He always provides a way!