Team Elie
Donation protected
Our delightful 17 year old daughter Elie has had significant and unique medical and developmental challenges starting at three months of age. At that time she was diagnosed with a "catastrophic" seizure disorder called Infantile Spasms. When she went for over four months without getting the seizures under control we were told that she was likely to have significant developmental challenges.
She was diagnosed with autism at age six and we learned that although it was unlikely for her to be able to express words verbally she was able to communicate effectively through a picture communication system.
Although she could be quite happy and energetic she would cycle inexplicably to being quite unhappy. We looked at medical and environmental causes for her unhappiness but there was no clear trigger.
When she was eight and cycled into her unhappy mood it was accompanied by her injuring herself. She would run and slam her knees onto a hard surface causing significant swelling, bruising and bone chips. At the same time it was obvious that she didn't want to hurt herself. She would lie on her stomach for hours so that she couldn't use her knees. Given that she was always active before this was completely uncharacteristic behavior.
She continued to cycle in and out of unhappy moods and self-injury which involved her knees, fists and her head for the next three years. Each time we looked for possible underlying causes and each time she would engage in behaviors of "self-restraint" where she would try to stop injuring herself. Her injuries and lack of physical independence due to her self-restraining behavior (needing to be covered in blankets, carry a pillow, lay on her stomach) became more alarming each time.
At age eleven she entered a self-injuring cycle that did not end. She had times of being happy but they didn't last long. We had to make the gut-wrenching decision to place her in a group home because she needed someone by her side at all times to keep her from hurting herself. At the time we didn't have enough state services to have someone available to help her for the 18 hours a day that she would be awake.
We sought help up and down the west coast to find any medical or behavioral experts that could help Elie. By age 13 her self-injury and self-restraint was so severe that she didn't want to move, but rather wanted to sit being wrapped up in heavy blankets and pillows. She still managed to engage in self-injury over 1000 times per day. It was obvious that she was suffering from significant anxiety and depression due to the fact that she was trying not to hurt herself but couldn't stop.
Thankfully we got connected with Dr. Cynthia Anderson at University of Oregon. She had worked with individuals like Elie and knew that she needed the expertise of the Inpatient Neurobehavioral Unit (NBU)at Kennedy Krieger Institute which is part of the Johns Hopkins hospital system in Baltimore.
We were able to get Elie into the NBU quickly (the wait list is usually a year long) because of the severity of her self-injury. She entered the unit in late August 2012. Utlilizing highly sophisticated applied behavior analysis techniques the NBU identified some of the functions of Elie's self-injury and developed a behavior treatment plan that addressed these functions.
Elie was discharged from the hospital in early February 2013 with an over 98% reduction in her self-injurious behaviors. She finally was able to enjoy all the activities she loved like spending time with us playing in the backyard, swimming, swinging on her hammock, and going to school. Her communication increased exponentially and we know she has so much more she wants us to understand.
Unfortunately after seven months back in Oregon Elie relapsed. Dr. Anderson moved from Oregon to North Carolina around that time and we lost the only in-state Board Certified Behavior Analyst at the doctoral level that had the expertise to oversee Elie's behavior treatment plan. By February of 2014 Elie was engaging in over 200 self-injurious behaviors an hour at times. We again tried to identify any underlying causes and with long distance consultation tried to get these behaviors under control.
By June 2014 we knew our only hope was to have Elie be admitted to Kennedy Krieger again. At the same time we knew that we needed to have a discharge plan that could be expected to be more successful in order to avoid relapse.
The Department of Human Services in Oregon provided additional funding to try and recruit someone with Dr. Anderson's level of expertise. Meanwhile Elie was again admitted to the NBU on 10/31/14. Unfortunately after four months of active recruitment, it was apparent that Oregon could not attract the admittedly limited number of behavior analysts that have the expertise to serve Elie. We knew then that we were going to have to look for out-of-state placements for Elie.
Elie continues to be quite unique and challenging in her presentation -so unique that her case was chosen to be featured in Grand Rounds for all the Behavioral Sciences faculty at Johns Hopkins. Johns Hopkins had Christie fly out to talk about Elie's case from a parent perspective as part of the presentation. Elie is in the top 99th percentile of complexity in individuals who present with automatic (no identifiable behavioral or environmental triggers) self-injury and self-restraint.
During this most recent admission to Kennedy Krieger the team decided that not only her self-injury and self-restraint should be targeted, but her mood disregulation as well. Behavior treatment alone wasn't working to address Elie's problem behaviors.
Finally a rare medical treatment was found to be highly successful in treating Elie's mood in mid-February 2015. This treatment targets some of the neurochemistry that causes her to self-injury. She's been amazingly happy and appears to no longer be filled with anxiety. In combination with her behavior treatment plan her self-injury rates are drastically reduced.
This medical treatment is so rare that it is only offered in a few states, Oregon is not one of them.
Our options for discharge placement became even more limited. Christie called as many placements as possible around the five cities where this treatment is offered. Only one placement has a potential opening, the applied behavior analysis expertise to oversee her behavior treatment plan and staffing to support her medical treatment appointments (we expect that she will need to access this treatment about every one to two weeks for the rest of her life.) The placement is at Melmark in Berwyn PA. We were able to visit the campus and talk to some administrators. It is clear that it would be a great fit for Elie's needs.
Now to the crux of our financial needs: we are facing some significant challenges in getting funding in place for Elie's placement at Melmark. It is clear that her needs can't be met in Oregon and without access to the once a week medical treatment she is at significant risk of relapse within less than three weeks after discharge. It is heartbreaking to think that all the amazing work that Kennedy Krieger has done could fall apart quickly. We can't imagine her going back to a place of depression, anxiety, self-injury and self-restraint.
Melmark will not only be able to help her with her self-injury but they have a wonderful school as well. Elie is so capable given the right educational programming. Melmark specializes in the most effective instruction techniques utilizing applied behavior analysis.
We've been working since early December with state agencies, our commercial insurance, contacting senators, and doing research on regulation and policies in order to develop financial support of Elie's needs. There is a glimmer of hope there, but no guarantee of all of the necessary funds.
At this point, in order to secure a spot at the only placement we've found that can support Elie with continued success we need some immediate funds. We expect Elie to be ready for discharge in just three weeks. We will need financial resources before that point in order to secure funding for placement. The cost of securing placement is a minimum of $25,000.
Thank you in advance for any support you might be able to provide. We appreciate all of you!
She was diagnosed with autism at age six and we learned that although it was unlikely for her to be able to express words verbally she was able to communicate effectively through a picture communication system.
Although she could be quite happy and energetic she would cycle inexplicably to being quite unhappy. We looked at medical and environmental causes for her unhappiness but there was no clear trigger.
When she was eight and cycled into her unhappy mood it was accompanied by her injuring herself. She would run and slam her knees onto a hard surface causing significant swelling, bruising and bone chips. At the same time it was obvious that she didn't want to hurt herself. She would lie on her stomach for hours so that she couldn't use her knees. Given that she was always active before this was completely uncharacteristic behavior.
She continued to cycle in and out of unhappy moods and self-injury which involved her knees, fists and her head for the next three years. Each time we looked for possible underlying causes and each time she would engage in behaviors of "self-restraint" where she would try to stop injuring herself. Her injuries and lack of physical independence due to her self-restraining behavior (needing to be covered in blankets, carry a pillow, lay on her stomach) became more alarming each time.
At age eleven she entered a self-injuring cycle that did not end. She had times of being happy but they didn't last long. We had to make the gut-wrenching decision to place her in a group home because she needed someone by her side at all times to keep her from hurting herself. At the time we didn't have enough state services to have someone available to help her for the 18 hours a day that she would be awake.
We sought help up and down the west coast to find any medical or behavioral experts that could help Elie. By age 13 her self-injury and self-restraint was so severe that she didn't want to move, but rather wanted to sit being wrapped up in heavy blankets and pillows. She still managed to engage in self-injury over 1000 times per day. It was obvious that she was suffering from significant anxiety and depression due to the fact that she was trying not to hurt herself but couldn't stop.
Thankfully we got connected with Dr. Cynthia Anderson at University of Oregon. She had worked with individuals like Elie and knew that she needed the expertise of the Inpatient Neurobehavioral Unit (NBU)at Kennedy Krieger Institute which is part of the Johns Hopkins hospital system in Baltimore.
We were able to get Elie into the NBU quickly (the wait list is usually a year long) because of the severity of her self-injury. She entered the unit in late August 2012. Utlilizing highly sophisticated applied behavior analysis techniques the NBU identified some of the functions of Elie's self-injury and developed a behavior treatment plan that addressed these functions.
Elie was discharged from the hospital in early February 2013 with an over 98% reduction in her self-injurious behaviors. She finally was able to enjoy all the activities she loved like spending time with us playing in the backyard, swimming, swinging on her hammock, and going to school. Her communication increased exponentially and we know she has so much more she wants us to understand.
Unfortunately after seven months back in Oregon Elie relapsed. Dr. Anderson moved from Oregon to North Carolina around that time and we lost the only in-state Board Certified Behavior Analyst at the doctoral level that had the expertise to oversee Elie's behavior treatment plan. By February of 2014 Elie was engaging in over 200 self-injurious behaviors an hour at times. We again tried to identify any underlying causes and with long distance consultation tried to get these behaviors under control.
By June 2014 we knew our only hope was to have Elie be admitted to Kennedy Krieger again. At the same time we knew that we needed to have a discharge plan that could be expected to be more successful in order to avoid relapse.
The Department of Human Services in Oregon provided additional funding to try and recruit someone with Dr. Anderson's level of expertise. Meanwhile Elie was again admitted to the NBU on 10/31/14. Unfortunately after four months of active recruitment, it was apparent that Oregon could not attract the admittedly limited number of behavior analysts that have the expertise to serve Elie. We knew then that we were going to have to look for out-of-state placements for Elie.
Elie continues to be quite unique and challenging in her presentation -so unique that her case was chosen to be featured in Grand Rounds for all the Behavioral Sciences faculty at Johns Hopkins. Johns Hopkins had Christie fly out to talk about Elie's case from a parent perspective as part of the presentation. Elie is in the top 99th percentile of complexity in individuals who present with automatic (no identifiable behavioral or environmental triggers) self-injury and self-restraint.
During this most recent admission to Kennedy Krieger the team decided that not only her self-injury and self-restraint should be targeted, but her mood disregulation as well. Behavior treatment alone wasn't working to address Elie's problem behaviors.
Finally a rare medical treatment was found to be highly successful in treating Elie's mood in mid-February 2015. This treatment targets some of the neurochemistry that causes her to self-injury. She's been amazingly happy and appears to no longer be filled with anxiety. In combination with her behavior treatment plan her self-injury rates are drastically reduced.
This medical treatment is so rare that it is only offered in a few states, Oregon is not one of them.
Our options for discharge placement became even more limited. Christie called as many placements as possible around the five cities where this treatment is offered. Only one placement has a potential opening, the applied behavior analysis expertise to oversee her behavior treatment plan and staffing to support her medical treatment appointments (we expect that she will need to access this treatment about every one to two weeks for the rest of her life.) The placement is at Melmark in Berwyn PA. We were able to visit the campus and talk to some administrators. It is clear that it would be a great fit for Elie's needs.
Now to the crux of our financial needs: we are facing some significant challenges in getting funding in place for Elie's placement at Melmark. It is clear that her needs can't be met in Oregon and without access to the once a week medical treatment she is at significant risk of relapse within less than three weeks after discharge. It is heartbreaking to think that all the amazing work that Kennedy Krieger has done could fall apart quickly. We can't imagine her going back to a place of depression, anxiety, self-injury and self-restraint.
Melmark will not only be able to help her with her self-injury but they have a wonderful school as well. Elie is so capable given the right educational programming. Melmark specializes in the most effective instruction techniques utilizing applied behavior analysis.
We've been working since early December with state agencies, our commercial insurance, contacting senators, and doing research on regulation and policies in order to develop financial support of Elie's needs. There is a glimmer of hope there, but no guarantee of all of the necessary funds.
At this point, in order to secure a spot at the only placement we've found that can support Elie with continued success we need some immediate funds. We expect Elie to be ready for discharge in just three weeks. We will need financial resources before that point in order to secure funding for placement. The cost of securing placement is a minimum of $25,000.
Thank you in advance for any support you might be able to provide. We appreciate all of you!
Organizer
Christie Carter Riehl
Organizer
Salem, OR