Wednesday, October 19, 2011

Zachary has been complaining of stomach ache each morning for the past three days. We mentioned this to his Physical Therapist we're thinking it's a stomach virus or something like that. I will continue to monitor it. He has also been taking Aleve each morning to avoid any leg pain.

Friday, October 14, 2011

More Questions for Dr. Jordan

I still don’t have access to your email, they said I had to sign papers or something at Vanderbilt and I never think about it when I’m there.
There are other case studies of this disorder are there patients who were successful in finding the leak and if so... What tests were done? Any damage that was done were they able to reverse them?

In your professional opinion. If we aren’t able to find the leak what is Zachary’s prognosis? 
There are patients who don’t know they have this disorder until much later is Zachary’s leak worse than theirs because he was diagnosed so early on and he is losing mobility and experiences pretty intense pain?
Not sure ... he got the scan earlier, with most children they don’t get scanned. Z just had better care than most. 
I’m sure that you have consulted with Dr. Levy and any other doctors who may know of Z’s case. What were their thoughts about the recent test? And where do we go from here?
CT Meylogram inject a dye and take pictures look for fluid going into sack. They do find leaks in people who don’t have the average symptoms of headaches. This test isn’t normally used for the type of findings we are looking for. Dr. Jordan wants to do this test with someone who has the proper expertise to find the leak. 
I’ve read about a chelating (key lating) agent, still don’t know a lot about it, but was wondering. Would it help break up the old blood so the body can reabsorb it better?
The chelating agent can help in most parts of the body but is isn’t able to get to the brain and spine, because the natural defense of the body is to protect those parts of the body. There is an Ongoing Clinical Research Study on ...
Deferiprone in SS. Testing the safety and efficacy of a lipid-soluble iron chelator. 90-day trial. Recruitment of 10 patients for this pilot study has been met. We are not recruiting any more patients. Start date: Spring 2010. End date: Fall 2010.
Future Clinical Research Study ...
Deferiprone in SS, expanded. Based on the preliminary success of deferiprone in our pilot study, we are planning an expanded study to include more patients and use the drug for 1 year. Expected start date: Summer 2011.
This is only approved to be tested on adults right now. Zachary would be a good candidate for this test, but because he is a child he doesn’t qualify, however, if we get to the point where there isn’t anything else we can do and he isn’t doing well or is progressively getting worse. We can call for a compassionate order to get Zachary approved to take the drug, that is if the risks out way his quality of life/his prognosis.

Thursday, October 13, 2011


Zachary standing straight


Active Range Of Motion Lumbar Flexion, legs straight


AROM Lumbar Flexion, legs bent

Tracking Pain

October 12
Took 1 Aleve this morning in hopes of avoiding pain this evening. 
8:00 p.m. - Complaining of some leg pain gave him 1 benadryl, put TENS on back with ice on legs 

October 13
1 Aleve this morning. This evening complaining of leg pain gave one benadryl, put TENS on back with ice on legs.

Tuesday, October 11, 2011

Back to Physical Therapy & More Measurements

Started Physical Therapy again, it provides pain management and keeps from hindering his range of motion. 
Courtney massaged/worked Z’s legs and back, did exercises and used TENS therapy with ice.
Active Range of Motion Lumbar Flexion: 20 degrees
Single Leg Raise - Right: 30 degrees Left: 25 degrees
Pain Free! 

Monday, October 10, 2011

More Measurements and More Pain

Active Range of Motion Lumbar Flexion: 10 degrees
Single Leg Raise - Right: 20 degrees Left: 15 degrees
Zachary had some intense pain today it started around 6:30 p.m. I gave him 1 Aleve and 1 1/2 Benadryl, put the Tens unit on, massaged his leg and put ice on. He’s complaining of not just his legs hurting but also his stomach and head. He finally fell asleep around 9:00 or so. 

Friday, October 7, 2011

Intense Pain

Zachary woke up with diarrhea this morning, so I opted to keep him home just to be sure he’s alright. This evening he experienced some pretty intense pain, he complained about upset stomach, headache and his legs hurting. I gave him 1 Aleve, 1 Benadryl, put the TENS unit on, massaged his leg and then put ice on. He also threw up a couple of times. ??? I’m not sure, but I think he may have caught a stomach virus or the pain was just so intense his stomach got upset?? The headache is a little concerning to me, it lasted from 8 p.m. to 9:30. The headache may be related to the procedure that was done, when he lays flat he doesn’t seem to be in as much pain, he is also light sensitive. Robert gave him a blessing and he is a little more relaxed now, still complaining of pain in his legs tho ... I’m hoping he falls asleep soon. 

Tuesday, October 4, 2011

The Angiogram

Zachary’s Angiogram is scheduled for today at 8 a.m. At 8:47 Zachary was on his way to the O.R. in the adult portion of the hospital to have the angiogram done and we are sitting in the main lobby waiting for news. I had no clue my nerves would kick in like this ...
They didn’t find any vascular leaks which means it isn’t over yet, but have ruled out a bunch of nasty things like aneurisms, and abnormalities of the blood vessels. 
There are ways that the spinal fluid can leak out and there are ways that the blood can leak into the spinal fluid, at least this is how I understand it. Next, we make a follow up appointment with Dr. Jordan to see what will be our next step. I’m figuring the Meylogram will be the next test .. It detects abnormalities of the spine, spinal cord and surrounding structures.

Monday, October 3, 2011

Zachary's Measurements

We took Zachary's measurements to see if they changed during our "trial run" of no Physical Therapy
Active Range of Motion Lumbar Flexion: 20 degrees
Single Leg Raise - Right and Left at 30 degrees