Below is the e-mail of the week. This e-mail addresses a child with a slow progression presentation of rasmussen’s. I have received a growing number of e-mails that discuss the so called adult-onset RE, a rare manifestation of RE. Adult onset RE is a slower progressing version of RE that is typically not treated by a hemispherectomy and occurs in teenagers and adults. These cases are particularly troubling when they occur in children as the diagnosis of RE can take months and the potential recovery from hemispherectomy is best when the surgery is performed at a younger age.
“Hi my name is Betty , I joined your group a couple of days ago in hope of making contact with other parents who could maybe share some of their experiences of this condition with me. My daughter Sylvia started having seizures over 3 and a 1/2 years ago age 9. At first she responded well to the AEDs & had a few well controlled months. Then the seizures return, change the meds, then seems to have good control again. This has now become a repeating cycle. Rasmussens has been given as a diagnosis by one hospital backed by telemetry and MRIs, who has now suggested steroid & immune treatments, with surgery not needed at this time. Her consultant who has always treated her is still not convinced, or that the condition has a very slow progression rate in her, as she is very well in herself at the moment and only has a slight weakness to her left arm. There is a lady on your blog who has a daughter called Sarah, who has had the condition for 7 years, do you have any contact details for her? As you are aware finding anybody to share their experiences is difficult due to the rarity of the condition, or maybe you could pass my details to others you may know who have a child with a slow progression rate. I would also like to say, I think the work you are doing is fantastic! and your daughter Grace is an inspiration to all the other children with this condition. Thank you for your continued support.”
This past week an important meeting took place between John Hopkins and UCLA. Led by Dr. Eileen Vining and Dr. Gary Mathern, of Hopkins and UCLA respectively, the meeting was a brainstorming session on the future direction of RE research. In the past year we have initiated several key research projects and we are now discussing the early results of this work and its impact on our plans. Keep you posted. An another research note, we continue to build the infra-structure for tissue transfer around the globe enabling increased research interest in RE.
On a more local note, this Tuesday we will be Zumba-ing for rasmussen’s as Grace will lead the way with expert instructor Michelle Ayoub. All of this is being organized by another great organization Kids Helping Kids. This will be a blast and we will be sure to post some pictures. We are fortunate to have such wonderful people supporting our efforts. Please join in and show your spirit by donating now. Thank you.