Friday, August 26, 2011

Physical Therapy


Courtney and Zachary stretching it out on the ball


Courtney helping Zachary with planks.


Patrick and Zachary sitting against the wall with silly faces

Friday, August 12, 2011

First Day of School

First Day of School. 

Zachary was in a lot of pain, but didn't want to miss his first day and was insistent on going. I called the school to check on him and he was feeling much better after the Aleve and Benadryl kicked in.

Friday, August 5, 2011

Notes from Phone Call with Dr. Jordan

Steroids/prednisone for the pain and to help reduce inflammation take with food it will make him hungry
This sort of problem is well reported ten or fifteen years after the accident or right after an accident. 
Is there an ongoing problem? Inflammation from blood. We would like to check if there is a tear or leak.
We want to treat his symptoms and discomfort
Look at blood vessels in his head
Any issues or leakages
Spinal tap





There is Inflammation in spinal fluid
Done all at once (the scan of his head and spinal tap)
If we don’t find answers and he still isn’t well we will do more tests but I feel these tests should be enough.
MRI/contrast and Spinal Tap
No aneurisms detected, there was some old bleeding in the head and it was located between the lining of the brain and the skull.  His Spinal tap showed normal white blood cell counts but the red blood cells were higher than they should be, which means there is bleeding occurring somewhere. We believe the source of the bleeding to be very small and believe it is coming from a small blood vessel but aren’t sure where.
Dr. Jordan would like for Robert, Zachary and myself to come in and meet Dr. Singer who is a neurosurgeon who specializes in vessels going to the head and spine he will talk to us in more detail about a more invasive test that might be able to detect where this bleeding is occurring. This test is called a spinal angiogram and it will give us a more detailed look at Z's blood vessels
Dr. Jordan wants to give Zachary some time ... a few weeks to see if there are any changes in his mobility or pain and then have us all come in. The information that was gathered is good news Z has no aneurisms and there is no infection, the bleeding that was detected is very small and not of emergent concern. 

Questions for Dr. Lori Jordan

-Superficial Siderosis is a disorder, has “Z” contracted this disorder/disease because of the trauma he experienced? No,not contracted, but has this disorder from a bleed that he experienced in the accident. 
-Does everyone who has this disorder start with a traumatic accident? No, but for other reasons for bleeding in the brain. She does know of one teen who has this disorder he lives in South Africa and Dr. Levy works with him.
-Did the diagnosis change at all upon discovering the severity of the accident? No,
very sure of SS and arachnoid ?bleeding?  - she’s looking for any other infections or causes of the pain and wants to be meticulous and doesn’t want to miss any possible infection or aneurysm 
-Will therapy help Z to regain his mobility? Yes, depends on helping the inflammation in his back, if we can decrease his inflammation then mobility should return.
-This “dry blood”, has it attached itself to Z’s spinal cord? Yes, and will stay there , goal is to decrease the inflammation. Something is making this active and we want to be sure of what that is
-Is there someway to break this pocket of fluid up? No, only decreasing it
-Is surgery out of the question because of how he has developed around this clot?
-I’m confused by this diagnosis I found that it is a disorder where hemosiderin (free iron) is deposited in parts of the central nervous system (brain and spinal cord tissue). It is often caused by repeated periods of bleeding in the brain (subarachnoid space). Did Z have repeated periods of bleeding in the brain? Yes, at some point he has or he could have a leak we want to do a scan of his head we only scanned from the base of his neck to the base of his spine. Or did he bleed from somewhere else? As far as we can tell he bled from his head. How does this get missed?
-The symptoms of SS: progressive ataxia (lack of muscle coordination), Spasticity, hearing loss, dementia, depression, impaired vision, pyramidal signs, fine motor control impairment, facial palsy, numbness in legs, abnormal sensation in legs. These things do not match up with Z’s symptoms. Why? Superficial siderosis (SS) of the CNS is caused by repeated slow hemorrhage into the subarachnoid space with resultant hemosiderin deposition in the subpial layers of the brain and spinal cord. Despite extensive investigations, the cause of bleeding is frequently undetermined. He has pain in the backs of his legs with occasional spasms, stiffness in his back and stiffness in his legs, and he is losing mobility in these areas. These are caused from the inflammation that is occurring at the base of his spine.
-Is there a support group? No, I don’t think there is one I will look into that. This only occurs mostly in adults.
-Are there other children with this and where are they? No, only the teen in Africa that we are aware of.

Thursday, August 4, 2011

Recap & Gut Instincts

We started taking Z back to Physical Therapy June 29th he was experiencing “that pain” again. It seems to flare up more in the summer than during the school year. Z goes to physical therapy 3 times a week for pain management. His therapist, Emily, noticed his lack of mobility in his back and felt there was something more going on than just hamstring contractures and recommended we see Dr. Johnson who is a sports doctor. Dr. Johnson took x-rays and found something at the base of his spinal cord, he couldn't tell me what it was ... he could just tell me that there was something there. So he ordered an MRI, however, Z was sent for an adult MRI and the results were not good enough to read, so for pain Dr. Johnson, recommended we use Benadryl (this is used as a muscle relaxer for children, so if you know any children who have growing pains 1/2 a Benadryl will help alleviate that pain and it won’t harm the child) and get a TENS unit as well. He then sent us to Vanderbilt Children's Hospital to Dr. Lori Jordan, a neurologist who ordered blood work and another MRI/contrast. The order got messed up and we ended up in a CT scanning room, I questioned the order and told the nurse that Dr. Jordan ordered an MRI/ contrast and he had to go and verify it with the doctor. I was lead into a consultation room and four other doctors came in to tell me that there had been a mistake with our appointment and that we could come back in the evening and we could get it done then. Well, the evenings are the worst for Z and he couldn’t be still enough to get good images so they had to reschedule the MRI/contrast and the wait turned into a two week one, because he needed to be sedated so that they could get the images that they needed. They ended up doing a full scan of his spine from the base of his neck to his tail bone. The scan lasted 3 1/2 hours then he had to stay in recovery until he was able to eat and drink without feeling nauseous. We should have results to the MRI by this weekend, at least that’s what we are hoping for. 
My gut tells me this is all related to the accident he was in with my parents. It had to have been missed. I just know that my goal/job is to keep Z as pain free as I can. 
Update from Dr. Jordan:  We learned today that he has Superficial Siderosis due to Trauma. He bled at the base of his head and the blood layered down his spine collecting at the base of his cord. We're still a little unfamiliar with the full details of his diagnosis, but have been told that this Trauma was an old one which leads us to believe that it was caused during the 2006 accident he was in. As far as his prognosis? There is no known cure and what they can do to help Z is unknown. This isn't something that is commonly found in children. Z's neurologist is going to be consulting with some of her colleagues at the Mayo Clinic/John's Hopkins and will be contacting me either tomorrow or Monday.

Z had some pain around 4pm so, we put the Tens on for 60min

Wednesday, August 3, 2011

MRI/Contrast


Waiting area at Vanderbilt
Z after getting an IV put in, He doesn't like needles

2pm - TENS 40min
MRI/contrast was given morphine for pain (pain was a 4 on a scale of 1-10 with 10 being unbearable and then given pain meds again for pain during the MRI because of the length of time he was sedated and they didn’t want him to be in pain when he woke up.

A Record of Z's Medicine and Pain (times are all approximate)

A Record of Z’s Medicine and Pain (times are all apporximate)
July 24 
10am - 1 extra strength tylenol , 1/2 benadryl
5pm - 1 Aleve
6pm - 1/2 benadryl
8pm -1/2 benadryl
July 25
12pm - 1/2 benadryl
1pm - TENS 20min
3pm - TENS 20min
6pm - 1/2 benadryl
July 26
12pm - 1/2 benadryl
2pm - TENS 20min
July 27 - PAIN FREE!!!
July 28
1pm - 1/2 benadryl
2pm - 1/2 benadryl
4pm - TENS 40min
July 29
2pm - 1/2 benadryl
4pm - TENS 40min
July 30
3pm - 1/2 benadryl
5pm - TENS 40min
Aug 1
2pm - 1/2 benadryl
4pm - TENS 40min
7pm - 1/2 benadryl
Aug 2
1pm - 1/2 benadryl
TENS 40min