Update from Shelly

Hello everyone and thank you all so much for showing interest in Cameron's progress and continuing issues. I truly believe that this last IVIG treatment provided Cameron with some improvements in her speech and use of her left hand which has been wonderful. She does however still continue to have about five seizures a day and they are very unpredictable and vary in type. This has made it hard for Cameron to remain at school for any lengthy period of time but we are working through it daily. Her school, teachers and resourse teachers are fantastic and they want the best for her. She was assigned a personal aide and they are now wanting to upgrade that person to an actual nurse that can determine when Cameron needs immediate medications and when an ambulance would need to be called. When she has a seizure at school there is certain rules they must follow, but with her seizures changing so frequently it is hard for them and for us for that matter to make a decision about when to use the diastat.

Diastat is a rectal sedative that must be given when a seizure does not stop which happens about three times a week. Even after the medication is given the seizure will usually last for another 15 minutes which can be very upsetting in a classroom setting.

We have added a new medication Kepra recently and we are hoping that it will provide some relief for her. She is also scheduled to due her next IVIG on the 16th on November. My mom will come again to help which worked out perfectly last time. Cameron has stared private Speech, OT and PT which is also wonderful. I truly believe that this new place is where we are supposed to be and I have a lot of confidence in all of her thearpist.

Please continue to share this blog with anyone who may ask about Cameron. It has really made life easier for me but I still would be glad to talk anytime and appreciate the genuine concern form everyone. We also thank all of you who continue to pray for Cameron. I know that God is with her and will protect her from harm. I also know that God can provide a miracle for Cameron and we are still hopeful. In the meantime we are doing all we can to help her to have a normal and happy life.

You may see Cameron around sporting her new pink helmet. It has been wonderful and allows us to relax a little more on a daily basis. Casey's Aunt Gay form Denver was here recently and painted beautiful flowers and butterflies on it-which Cameron loves. Thanks Gay. Take care all. Shelly

Update

The visit to Baptist yesterday went well without incident with either the MRI or the IvIG treatment. The IvIG infusion was more than she had in our first round of this therapy and she came home in a noticeably upbeat spirit. She had a great night but this morning had another seizure that was lengthy. She did not have any seizures yesterday so it was not a suprise to have one this morning. Hopefully as we move through the weekend the IvIG will settle in to lessen the seizure activity going forward. Thanks for all the comments and encouraging words!!

Baptist tomorrow

Cameron is having another MRI at 8am tomorrow to be followed by her 2nd round of IvIG therapy. IvIG is intravenous immunoglobulin and is taking from a combination of many donors of human plasma. This will be the 1st in what will be monthly IvIG treatments--the infusion lasts about 6 hours or so. We are hoping that this can put a stop to her daytime seizures and will allow her to go back to kindergarten next week. Our doctors at Johns Hopkins want to run through this option of therapy before we look furthur into surgery. Also the MRI we are having will show them if any changes have occured since the last one which would be a sign that the Rasmussen's Syndrome has progressed. Please continue to keep her in your prayers to give her relief from the seizures or to move us to a point that surgery is a more viable option. At this point, surgery is the only "cure" for Rasmussen's and IvIG or any other non-surgical therapy possibly just gives her temorary relief. However anything is possible and with God's help miracles do occur. While we were at Johns Hopkins Shelly met Holly Paauwe and her daughter Avery. Avery just had a hemispherectomy (the surgery Cameron might have later) and has had a rough time since the operation. Here is her blog http://thepaauwereport.blogspot.com If you read this you will see how great Holly's faith is in spite of what is going on now. We pray that we can be as strong as her if we ever have to cross that path. Please keep Avery and her family in your prayers so hopefully things will improve for them quickly. We greatly appreciate all the support that you have given us and we feel very blessed to have Cameron & Caroline regardless of what we have to deal with to provide them with the best quality of life in the future. Nobody ever said parenting was easy and man were they not joking :-) We love you all--Casey, Shelly, Cameron & Caroline

Results from Johns Hopkins visit

We got a call on Wednesday from Johns Hopkins on their recommendations from the meeting they had about Cameron this week. They have decided to delay any brain surgery now but she will start to receive monthly IVIG therapy instead--this is what she had during our last stay at Baptist. She will also have another MRI when we have the 1st therapy scheduled which is pretty soon. Also another non-surgical therapy, a chemo drug called Citoxin used primarily to treat MS, is an alternative that they might explore pretty soon as well. While this is not the final solution to the problems we are having with Cameron's seizures, we feel we are definitely in the best hands possible to lead us to the decision about surgery. They want to give theIVIG a chance to see if there is any noticeable improvement but will be open to reevaluating everything if Cameron's condition does not improve or gets worse. God has led us to this place and we will continue to trust in Him that there are better days ahead for Cameron. Thank you again for thinking of us and we are very grateful for all the prayers and support.

Cameron's Johns Hopkins letter

Dr. Vining,
I emailed you earlier about my daughter Cameron who was recently diagnosed with Rasmussen's Syndrome in July. She started having seizures when she was 3 and was initially diagnosed with Cortical Dysplasia. She is 5 years old now and turns 6 in December. From contact through a number of different resources we have decided that we need to come to Johns Hopkins to be evaluated to see if Cameron is a candidate for surgery. She has experienced a significant decline in her speech and motor skills that started in December of last year. At this point she really does not communicate and rarely responds to even simple questions that we ask her. Additionally, her left-sided weakness is becoming more profound everyday. This is a dramatic change where as this time last year up to December she could communicate easily with us and really did not have any noticeable decline in her skills. We now feel she is headed down a path to be severely handicapped permanently if something is not done soon. She just got through with her 1st round of IVIG therapy at Wake Forest University Baptist Medical Center where our current neurologist Dr. Cesar Santos is located. On Friday we sent information on Cameron to Johns Hopkins based on what was requested when my wife spoke to Diana Pillas. We are pleading that we can be seen soon. We have been in contact with a number of families that had successful surgeries with Dr. Ben Carson who encouraged us to consider not delaying in looking at surgery for Cameron. Of course we are new to all this and really feel that you and the staff there can help us make the right decision if Cameron's decline is indeed due to Rasmussen's. Please take all of this in consideration to help us get in to see you and the staff there as soon as possible.