Reaching out to people effected by epilepsy or mental illness....

OUR MISSION: a of epilepsy and mental illness, bullying, and assist people in obtaining help to reduce suicide. 

3. Veegpanions have been part of our work for seven years for patients entering epilepsy testing, surgery, or other medical challenges. We have added many versions over the years including a G-Tube doll with book, C-pap, AFO's, VNS, and several other adaptations for special individuals. We have sent roughly 260 to five countries. These have always been free to the individuals. Now these therapy creations (plush dolls, bears, cats, dogs, or monkeys, ) will be part of Preventing Teen Tragedy for our Epilepsy Division. They remain free to patients. These started as therapy for the challenge Our desire is to assist individuals and families effected by mental illness or epilepsy through 

                               support, information, and advocacy. Our purpose includes advocacy education for      

                               individuals, families, and the community about epilepsy and mental illness.  Our goal is to 

                               reduce the stigma associated with these disorders. 

Vision:                  Forming cohesive teams between individuals, families, and professionals is one of the 

                              long-term goals of PTT. The appropriate medical care and educational needs will be met 

                              these working teams learn to communicate well. The care in Northeastern Connecticut needs

                              improvement. Awareness programs for both epilepsy and mental illness need to begin. We 

                              envision barriers coming down for both individuals with epilepsy as well as mental illness. 

3 DIVISIONS of PTT

1a. personal advocacy learning how to obtain the best medical care for yourself or a loved one. We have learned that developing a positive working relationship with a doctor is a valuable tool to successful treatment. We can assist in teaching while still guarding your privacy. 

1b. Legislative advocacy. Joining with other foundation on initiatives that effect epilepsy or mental illness to form the strongest  voice. We must stop the stigma of both brain disorders. 

2. Suicide prevention. through information, education, and support throughout the community we hope to help reduce suicide. Proper treatment includes support programs for families and individuals.  Sometimes this can include education for the community where the individuals live, work, go to school for their best quality of life. Together we can try to eradicate the stigms our family endured because of Sam's epilepsy and a desire to deliver therapy tools to others going through challenging times during testing. I will include the story of "How VeegPanions began" in this blog.                     

           

Story of Veegpanions

How VEEGpanions were born. My son had several VEEGs that were not only frustrating and unsuccessful in finding a seizure focus they actually found him taken off medication. We were told he had outgrown his seizures and all was great. While this is usually welcome news, his seizures continued! We were so frustrated and scared! His neurologist at that time insisted that that other neurologist could not have been mistaken, even though his hospital record showed a very brief seizure and some abnormality yet the report said all was normal. These things haunted us. We saw the frustrations mount in our son as well. Thankfully, after 3 very long years, he is back on seizure medications and is doing much better, with his seizures becoming better controlled. He declined in those 3 years to the point that we feared ever seeing him get back to where we see him today! We are amazed at how far he has come, now! It has been a difficult time, to say the least. We began making VEEGpanions during those difficult years. We used that time to reach out to others who needed to go through the Video EEG testing and choose to make it a positive thing, rather than dwelling on our extremely negative experiences.  We saw the joy in reaching out to others, trying to offer reassurance to them and it has been a great thing to bring us peace, as well.

              As a member of the Epilepsy Foundation website, I was often asked about VEEG or longterm monitoring. It was difficult for me to answer these questions, but I could not just answer from my own experiences. I felt it only right to research and answer that it can be helpful for others. We had friends who needed to send their own children to VEEG monitoring and they turned to us for advice. Not wanting to scare them with our own negative experiences, I searched for a positive way to reassure them, calm a frightened child, send a giggle, anything………….I thought of making a cuddly thing a small child could relate to, toss around, talk to, yell at, be a kid with, and look like. HEY, let’s put some EEG “leads” on a bear and see what happens. These “Veegpanions” have changed many many times over in the last two years. The very first one, I think, went to a boy names Wesley. He helped name them VEEG. He will always hold a special place in my heart as he has also had a hard time finding the best treatment, just as my son has. VEEGpanions were named with his help. The first one hand delivered, was the hardest one for Sam and I. This one went out to a little girl, aged 2 who went to the same horrid place that still haunts my son’s memories today. I had made promises to the mother that this doctor could help her little girl, even though we had not had the best experiences. Sam was determined to go with me to help little Emily. I was skeptical since he was not overly fond of toddlers. We visited her and spent many days as she stayed for her telemetry there. She has a special place in our heart and always will. ONLY this child could give my son strength to reenter those doors! “mom, if I can go and help her, I need to go….”

Soon after VEEGpanions were born another friend’s son was having his VNS implanted and she asked if there was anyway for that to be done, too. Again, back to the drawing board. This “implant” has also been through many upgrades to where it is today. It is sewn to the chest, with cloth “wire” leads onto the neck to somewhat resemble the real thing.

Each bear, ( plush doll, cat, dog, monkey…..) has the child’s name on a wrist band somewhat resembling a hospital band as well, (the earlier ones had a ribbon around the neck)……

I hope this explains how we started this production. I have maintained this quietly, mostly to ecommunities children, through word of mouth. I have kept this out of pocket so far, but a few did donate to assist this to keep it going.      I have continued this to keep a smile on the children’s faces as well as the mom’s while they face these tests. I have seen more than a few doctors, nurses and techs grin as well. I even heard of two ecommunities families who met because of these bears! They were in the same unit and the techs were talking because the two girls have similar bears!! One mom wrote me to let me know!!

As of Sept 2011 I have sent out around 260 , I lost track at one point, but that is my best estimate….I plan to keep this going….Keep the smiles going!

(This was written originally in about 2006, just the numbers were updated in 2011)

November is Epilepsy Awareness Month!

The fact that November marks the 6 month mark since Sam left us and Epilepsy Awareness Month arrive at the same time seems rather ironic to me. Sam was 10 years old when he approached me with the words, " Mom, you always told me that God uses the bad things in our lives for something good. PROVE IT!" I could not let him down! I was challenged! I knew that God had always done this in my life, including when my own father had died, but showing this to my son, who had a chronic and serious disorder, this was another thing! I went on-line and started to search. "Epilepsy"......I found the National Epilepsy Foundation and the "Speak Up/Speak Out Kids Speak Up program"; It involved applying and if chosen a child and family member traveled to Washington, DC in March for the Public Policy Institute of the Epilepsy Foundation to meet others with epilepsy then head to Capital Hill. They would have meetings with their representatives and explain their personal stories of the impact of epilepsy. WOW, this sounded pretty neat. I explained this to Sam and asked if he wanted to apply. He did want to try and was chosen as one of 30 children across the United States, the only one from Connecticut. The EF Affiliate called me stating, "Who are you, I have never heard of you before?" I explained that I had not heard of her before either nor had I known there was such a thing as the Epilepsy Foundation in the three years of my son's condition. I had Sam and his sister Anna write pamphlet style booklets in order to prepare for our trip. I had done some research on the EFA website about advocacy because I like to be prepared. The creation of the leave behinds provided great therapeutic release for both of them as we discussed the contents. I have taught many families how to create this type of book in the years since that time. I have also strongly recommended Kids Speak to dozens of Families. Sam went with me several times. Each time provided valuable and different experiences for him. Telling members of Congress our personal experiences provides specific information that the member or health legislative assistant can use to vote appropriately. Epilepsy is a disorder that can be variable. It worsens for some people. There are co-morbid conditions (goes along with) such as depression (in 11-60% of the people with epilepsy according to Dr.Andres Kanner), Learning problems can occur, ADHD, behavioral problems, sleep disorders, social problems, suicide rate is higher, 25,000-50,000 people die annually due to epilepsy or epilepsy related causes each year. 50 % of children can outgrow their epilepsy by puberty. Their is no central clearing house for information to know if any of these cases are among those that have their epilepsy come back later in life. 1 person in 10 WILL have a seizure at some time in their life. 1 person in 100 has epilepsy, between 3-5 million people has epilepsy in the US. (the discrepancy is because of some who are either not diagnosed or are not being currently treated for their epilepsy. ) People with epilepsy CAN do things. Some have been Congressmen who helped write the American with Disability Act, Another is an Olympic Hockey Player, we can be writers, actors, teachers, social workers, business people, IT specialists, artists, doctors, neurologists or anything else. Epilepsy is a spectrum disorder that does impact the entire family. The fact is, epilepsy is not something people need to fear, just be educated about! Epilepsy is not demon possession. It is misfiring neurons that cause a reaction elsewhere in the body. Sam continued to be an advocate more for his depression for the remainder of his life. Most people who have ever met me know I am a passionate advocate. (yes, I talk to anyone!) I HATE epilepsy. It robs people of life. I LOVE people WITH epilepsy! They all amaze me. DO I regret having epilepsy as part of our life? That is a very hard question. I regret the pain my son endured. (but everyone has something, right?)....I do wish Sam and Anna could have held the closeness they first had. Epilepsy and mental illness changed the friendship they initially had. We have had the privilege of knowing some wonderful and inspiring people we would not have known if epilepsy had not been in our lives. I do believe I am stronger because of what has happened along the way.