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
Saturday, December 16, 2006
Sunday, December 10, 2006
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
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
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