Walking Strangely

Zachary is walking quiet a bit differently today. 

Zachary seems to be twisting more and scuffing his feet to the ground more, also seems to be having a little more trouble climbing the stairs, almost like he squats to climb up. I’m very concerned about him and will contact his Physical Therapist and his neurologist today. 

Spoke with Zachary’s Physical therapist this morning and explained to her the tightening Zachary was complaining about and she thinks that it may be neural tension not muscular and recommended I contact his neurologist.

Called Dr. Jordan’s office and left a message for her to let her know of the changes that are occurring in Zachary’s ability to walk and the tension or pulling that he is experiencing. Also video taped Zachary on my phone this morning to show how he is walking.

Contacted Medical Records at Texas Children’s Hospital to have Zachary’s medical records (832 822 4280) forwarded to me. 

Access online at texaschildrenshospital.org

Patient Information 

fax number 831 825 9056


I seem to be having issues with getting a hold of Zachary's medical records from Texas Children's Hospital

Spoke with a friend from my DWA class who has a mother that goes to Johns Hopkins to see a neurologist there. She is forwarding me information on a Superficial Siderosis Specialty Clinic there. 

Here's the info from JHH website

Home > Neurology and Neurosurgery > Research & Clinical Trials > Neuromyelitis Optica Research Lab

Superficial Siderosis Clinic

Superficial siderosis (SS) is a neurodegenerative condition caused by chronic hemosiderin deposition in the brain and spinal cord.

This rare disorder presents with hearing loss, balance problems, and difficulty walking. If you have a diagnosis of superficial siderosis, you need to be seen by a specialist to find the source of bleeding and potential therapies to stop the bleeding and reverse the damage.

To make an appointment, please call our medical office coordinator at 410-614-1522, option 3.

To reach Dr Levy directly, email him at nmo@jhmi.edu or call 443-287-4412.

Ongoing Clinical Research Studies:

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 Studies:

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.

Dr. Michael Levy at Johns Hopkins he runs the Superficial Siderosis Specialty Clinic

Appointment Line: 410 614 1522

Direct Line: 443 287 4412

Left a message on his voicemail, letting him know that I'm interested in finding out more about this disorder and seeing if there is anyone who can help Zachary, I also let him know that I have been told that my son is the only child known to have this disorder and that he is experiencing mobility issues in his back and legs. 

I did receive a call back from Dr. Jordan she simply said that yes she is sure that it is neural tension related to superficial siderosis and says that doing the physical therapy may help loosen things. What we are doing for pain is what we can do there isn’t any other therapy.

Zachary went to Physical Therapy today. When I picked him up from school he seemed to be walking a little better. After Physical Therapy he seemed to be closer to his normal walk. His physical Therapist found that his calves were pretty tight did some work on them and did some exercises with Z to help loosen things up. Z seemed a lot happier after his visit today. Also his PT recommended that we use the TENS on his calves to see if that would help with any pain that Z might be experiencing. 

From: Michelle Huguley <mhuguley@bellsouth.net>
Date: Thu, 15 Sep 2011 07:08:15 -0500
To: <nmo@jhmi.edu>
Subject: A Child with Superficial Siderosis

Dr. Levy,

Hi, my name is Michelle Huguley and I am trying to find ways to help  

my son Zachary, he is 9 years old and has been diagnosed with  

Superficial Siderosis. He has mobility issues in his lower back  

causing pain and tightness in his legs. I have attached his medical  

records and his Medical journal in hopes that you would be willing to  

go over them and help me to help my son. I have been told that he is  

the only known child case with this disorder and I am interested in  

finding out all that I can about this disorder and how it may affect  

my son. His immobility concerns me because he still has a lot of  

growing to do and with the neural tension he is experiencing I am  

concerned that he will lose his ability to walk.

With Gratitude,

Michelle Huguley

Hi Ms Huguley,

I know your son's case well. Dr Jordan contacted me several weeks ago about him and we have been corresponding ever since. I know about the pain in his back with stretching, the pain in knees, the spinal tap and MRI results and I've discussed my thoughts on all of these issues with Dr Jordan. Your son's case is complicated but you are in good hands at Vanderbilt. 

Superficial siderosis is an extremely rare condition. There are no more than 50 diagnosed cases in the US and Zachary is the only kid I know of with it. My second youngest patient is 19 in South Africa. The reason it's not found in kids is because it takes a long time to develop. Likely, the symptoms Zachary has in his back now are not due to the superficial siderosis but rather to the inflammation associated with bleeding into the spinal fluid, which is also the underlying cause of the superficial siderosis. I expressed to Dr Jordan the importance of finding the source of bleeding and stopping it as the best possible solution to both the current symptoms and the long term superficial siderosis. Dr Jordan and I are friends from our time together at Hopkins so she knows she (and you) are always welcome to ask for advice on your son's case.

Michael Levy