IVIG

Cameron completed her 4th round of IVIG on Thursday. We are getting the hang of things but hoping that we will not have to do this for much longer. We got our call from Hopkins this week and Cameron is scheduled for the 22nd and 23rd. She will have a pre-surgery work up with PT, OT and Speech testing and we will meet Dr. Jallo the surgon and meet with Dr. Vining and her team again.

Cameron is having a much better week as far as seizures go but she is dealing with nausea and gastrointestinal upset due to the depacote. It is such a challenge because no matter what you do there is a trade off.

As many of you know Cameron received a wish from Make a Wish and many of the items are arriving which is so much fun. We asked for a thearpy room and she loves the items and toys that have come in so far. We are also getting a special computer that should be here very soon. Other then that all is well. My mom was here and celebrated breakfast with Santa this morning which the girls loved. I am hoping to get out x-mas cards with a picture this week. We are heading to Atlantic beach next Saturday for a relaxing Christmas and I can't wait. Cameron and Caroline can't stop talking about the beach so we will pray for beautiful weather.

Take care. Shelly

Review of last week

Hello. Just wanted to update everyone on Cameron's week and some news that we have recieved from Hopkins.

Cameron started a new medication this past Sunday called Depakote. It has been a bad week for her due to the fact that this medication interacts with her Lamital (a current medication). Cameron normally has a level of 15 on Lamital and it was up to 52 with the addition of the new med. This caused some major problems for her and she missed most of the week of school. As strange as it is when you have too much medication in your system it acutally can cause seizures which is what happenend with her. She was not walking well or talking and was in pretty bad shape. As soon as we got the information on her high levels we took her off of the Lamital and saw immediate improvements.

We also heard from Hopkins this week and got the news that they want to see Cameron for a pre-surgery work up. They are not satisfied with the level of results from the IVIG and do not feel like we should waste anymore time. We have lots of questions of course, but this is what I always thought things would boil down to. We will know soon when we should be heading up there but hopefully it will be in January.

Cameron has another IVIG treatment on Thursday and I am excited for her to get another boost although I do see the impact of each treatment fading somewhat.

Cameron's CNA care will begin soon and I am excited. The individual will be able to work with Cameron on educational items as well as providing her with care. Our other great news is that Cameron recieved a Make a Wish and is getting all kinds of great theraputic items including a touch screen computer with special programs to help with her development. I will update soon as soon as we know more about our next appointment with Hopkins. Much love and thanks again for the support. Shelly

Appointment at Baptist

Cameron had an appointment today with Dr. Santos and our wonderful nurse Valerie. She had an adjustment to her Vagus Nerve Stimulator to a "rapid cycle". Previously it would go off for 30 seconds with a 5 minute break. Now it goes off for 7 seconds with a 18 second break. Very different but often this rapid cycle works well in children. We are starting yet another new medication Depacokte soon and I am not as hopeful about this as I am the change to her VNS. This really seems to be the only thing that has made an impact on her seizures.

Cameron is doing well at school and is riding the bus which is working out well for me. It was hard to wake up Caroline everyday to pick Cameron up so I don't feel quite as stressed. We have decided that Cameron will stay at her new school for now mainly b/c of her new teacher and her fantastic PCA (personal care assistant) Renee. Hi, Renee.

Cameron did have a seizure yesterday at school and hit her face and cut her eye. She did not need stiches and now just looks a little strange b/c of a slight black eye and swelling. She is such a trooper and Casey has started to call her brewser. This is the second injury near the eye in the last two weeks so we are going to have to get a hard helmet with a face guard. If I ever thought her current helmet was unattractive I thought wrong. Otherwise all is well and we are continuing to find some good food options for Cameron on her diet. I am getting better at understanding lables and what to look for which makes a difference. Now if I could only find some bread that was not the consistency of bricks she would be good to go. Take care. Shelly

Visit to Baton Rouge

Hello, We had a visit to Casey's sister and brother-in-law last week and it was wonderful. Casey got to go to an LSU game and Cameron and Caroline got to spend some QT with their four cousins Thomas, Annie, Claire and Daniel. While we were there we went to see a Dr. Stephani Cave. She has put Cameron on a gluten and casien free diet. This is wheat and dairy product free. The diet has it's challenges but we are more then willing to try this. Many children bodies do not breakdown these proteins which get into the bloodstream that eventually end up in the brain as a form of morphine. These morphines interfere with the transmittion of nerve impulses which effect behavior and development. She also has Cameron on alot of supplements to help cleanse her system. Like I said we are willing to try anything but what she talks about makes a lot of sense. She has written a book that links vaccinations to auto-immune disorders as well as autism that I am currently reading and find very fasinating.

As Casey said we got the approval for Cap-C yesterday. This was great news as we were not expecting to hear anything until after Christmas. Cameron will have a CNA everyday from 2:30 to 5:30 to help with her care. This covers just about everything and will be very helpful to me. We have to now choose an agency and interview CNA's to find a good fit. Addtionally, this will allow Cameron to get much needed speech thearpy four days a week. It would also cover cost for equipment that Cameron may need which will also be helpful. We are excited and truly appreciate all of the prays for this matter. Much love and Happy Turkey Day--Shelly

Great news!!

Yesterday Cameron was officially approved for Cap-C services!!! This is a Medicaid sponsored program that will primarily provide us with Respite Care (official definition--A service that gives someone temporary time away from the continual care of the person they are responsible for. It could be in the form of an adult day care center, occasional in-home nursing care, "trade-off" afternoons with another caregiver or service from a community volunteer)--a much needed break for Shelly. I think the hours are 2-5 daily for them to come to our home during the week but Shelly will post soon with all the details on this and the other things going on now. I am so fortunate to have these blessings of a thoughtful wife & mother and 2 beautiful & super sweet daughters. Thank you God!! Happy Thanksgiving to you all!!!!

take care, Casey

Update on School

Hello everyone. I know it has been a while so I will be updating on several topics over the next few days. Cameron has moved to Pilot Elementary to the Lifeskills class. They have a full time nurse in this class and Cameron is able to keep her personal care assistant. I was honestly very heartbroken about the move for several reasons but as Casey and I see it this is a trial. If it is not a good fit as much as we would hate to do it we would move her back to Jamestown. Cameron and I went to visit the classroom last week and I had a complete breakdown. I don't do this often but Cameron had a bad seizure in the car and then I had to go into the classroom and tell her story all over again. This is the third time as we had originally started out at Florence Elementary. The teacher, assistant and nurse that we met with were very compassionate and we felt good about giving this a try. This classroom is not as acedemic but the teacher grew up with a twin sister that had seizures as well and feels comfortable with the situation.

I did find out on Cameron's first day that they do not have a speech teacher at this time and we are trying to work through this with the school system. This is Cameron' s greatest need at this time to we will pursue the issue until we have resolution. Cameron is also riding the bus which is a great source of joy for her. She is so proud when she gets home and it makes my life so much easier as I do not have to wake up sweet Caroline everyday to pick up Cam's. Next week Cameron will start to ride the bus to school as well. I am a little nervous about this as she will be at school during a the time of day when her seizures can be more active. Please pray for her saftey next week and pray that her caregivers are prepared to handle her needs. Love you all Shelly.

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.