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)