Tuesday, June 12, 2012
Cutter Update (Spring)
Hello Friends!
Just a quick Cutter Bug update. Cutter is doing wonderful! Still no seizures since Feb. 21!!! We are so very thankful! First, Cutter had a neuro-psych test on May 31st in Chapel Hill. They wanted to see where he is developmentally. The first part of the test went pretty rough. Cutter acted like every other typical two year old. A mind of his own! He did a little of what they wanted him to do, but not everything. We decided to take a break, grab lunch and try again later. When we came back from lunch he did MUCH better, and we were able to see him do some of the tests that they really wanted him to do. We have not gotten a report yet about their findings. We are anxious to hear what they think!
Cutter did have to have a repeat MRI done on June 5th. However, they did not charge us for this MRI since they made the mistake of doing the wrong kind of MRI in April. We were very glad to hear this. We have not gotten the results from the June 5th MRI yet, but we are waiting on Dr. Huffstutter to read the scans, as well. Dr. Elkay said that the MRI in April did not show ANYTHING on Cutter's brain. They did not see that he had Cortical Dysplasia at all. So, before we get our hopes up we want to hear what Dr. Huffstutter says about the scans. This has happened to us before at Chapel Hill. When we first went down there two years ago they did not see anything on Cutter's MRI. They had to repeat the MRI and have different people look at them before they came to a consensus that they did see evidence of Cortical Dysplasia.
It would be wonderful if Cutter no longer had FCD. Then this would probably mean that Cutter would not have anymore seizures, and that God has cured him. We know that God can certainly do that! Hopefully, soon, we will know more about this situation.
Please, please keep praying! We wouldn't be where we are today without the support and prayers of everyone around us! We will update as soon as we know more!
Saturday, April 7, 2012
Cutter Update
Hello Friends!
Cutter has done wonderfully since our visit at Chapel Hill. We have yet to see any seizure activity. We took Cutter to Chapel Hill on April 3rd for his MRI and a follow-up visit with Dr. Elkay. They gave Cutter Versed to help calm him down. He did great with that. They had to poke him three times to get an IV started. They thought that this might be because he was not able to eat or drink anything for six hours prior. When they started the sedation Cutter fought it terribly. Even though we know he was tired, he had the hardest time just giving in and falling asleep. Finally, the sedation really kicked in and he was sound asleep.
The MRI took about an hour. He woke up briefly after they unhooked the sedation. He was quite grumpy. Then he saw us and calmed back down and fell asleep for another hour. When he woke up the first thing he wanted was milk. Of course! The child goes through a gallon of milk every other day or so! We then went to Dr. Elkay's office and spoke with her about how Cutter had been doing. She told us that Cutter had had an FMRI today, and I told her that the nurse practitioner told me that it was just a regular MRI. An FMRI is a functional MRI that shows the functions of the brain. A regular MRI shows the structure of the brain. She was not happy that they did not follow her orders. She was hoping that maybe the NP just didn't know what she was talking about and that it truly was an FMRI. She scheduled his next visit for June 5. Sometime between now and then Cutter is supposed to have a neuro-psych evaluation to check on his development. She left his medications the same this time.
A few days later we called back to see if it was the right MRI or not. It was not. So, we were pretty upset that we had went through all of that for nothing. Putting your child to sleep is a terrible process. Draining for all those involved. However, she said that she was going to be able to use the images to do further study on Cutter. So, hopefully, she will get something out of the results. We are not sure at this time whether or not he will have to have another MRI later.
Thank you for your continued prayers and support!
Cutter has done wonderfully since our visit at Chapel Hill. We have yet to see any seizure activity. We took Cutter to Chapel Hill on April 3rd for his MRI and a follow-up visit with Dr. Elkay. They gave Cutter Versed to help calm him down. He did great with that. They had to poke him three times to get an IV started. They thought that this might be because he was not able to eat or drink anything for six hours prior. When they started the sedation Cutter fought it terribly. Even though we know he was tired, he had the hardest time just giving in and falling asleep. Finally, the sedation really kicked in and he was sound asleep.
The MRI took about an hour. He woke up briefly after they unhooked the sedation. He was quite grumpy. Then he saw us and calmed back down and fell asleep for another hour. When he woke up the first thing he wanted was milk. Of course! The child goes through a gallon of milk every other day or so! We then went to Dr. Elkay's office and spoke with her about how Cutter had been doing. She told us that Cutter had had an FMRI today, and I told her that the nurse practitioner told me that it was just a regular MRI. An FMRI is a functional MRI that shows the functions of the brain. A regular MRI shows the structure of the brain. She was not happy that they did not follow her orders. She was hoping that maybe the NP just didn't know what she was talking about and that it truly was an FMRI. She scheduled his next visit for June 5. Sometime between now and then Cutter is supposed to have a neuro-psych evaluation to check on his development. She left his medications the same this time.
A few days later we called back to see if it was the right MRI or not. It was not. So, we were pretty upset that we had went through all of that for nothing. Putting your child to sleep is a terrible process. Draining for all those involved. However, she said that she was going to be able to use the images to do further study on Cutter. So, hopefully, she will get something out of the results. We are not sure at this time whether or not he will have to have another MRI later.
Thank you for your continued prayers and support!
Tuesday, March 20, 2012
Chapel Hill Day 3 ~ Going Home!
Hello Friends!
We get to go home today! Dr. Elkay came in this morning and talked to us about Cutter's EEG. She did not see any actual seizures but she did see several episodes of abnormal discharges on the right front side of his brain where the Cortical Dysplasia is located. She did not see these discharges in September during Cutter's last EEG. She adjusted his Keppra level from 3 ml to 4.5 ml and his Dilantin level from 3 ml to 2.4 ml. Hopefully this will take care of the problem.
We will be back next week for a follow-up appointment and then sometime in April or May for his functional MRI and Neuro-Psych evaluation. They are supposed be getting those appointments set up for us, so we are not exactly sure when they will be.
We hope to be going home in the next little bit. Take a look at some of the pictures we took last night and this morning of the boys. They have both been such good little troopers!
Thank you for all of the phone calls and messages. Most importantly, thank you for the prayers!
We get to go home today! Dr. Elkay came in this morning and talked to us about Cutter's EEG. She did not see any actual seizures but she did see several episodes of abnormal discharges on the right front side of his brain where the Cortical Dysplasia is located. She did not see these discharges in September during Cutter's last EEG. She adjusted his Keppra level from 3 ml to 4.5 ml and his Dilantin level from 3 ml to 2.4 ml. Hopefully this will take care of the problem.
We will be back next week for a follow-up appointment and then sometime in April or May for his functional MRI and Neuro-Psych evaluation. They are supposed be getting those appointments set up for us, so we are not exactly sure when they will be.
We hope to be going home in the next little bit. Take a look at some of the pictures we took last night and this morning of the boys. They have both been such good little troopers!
Thank you for all of the phone calls and messages. Most importantly, thank you for the prayers!
Monday, March 19, 2012
Day 2
Hello Friends!
We got to talk to Dr. Elkay this morning. She read Cutter's EEG from yesterday and saw no signs of any seizures! She did see what is called "the tendency to have seizures" but no seizures resulted from any of those events. The plan for this visit is to do monitoring for the next day or so, do some medication adjustments and go home.
At UNCCH they are getting a new epilepsy center with better equipment and better monitoring. This will be in July. She plans to have us back then for more monitoring. Between now and then we need to come back for a neuro-psych evaluation to see how Cutter is doing developmentally. We will also have to come back for a FMRI, which is a procedure where they will wait for Cutter to have a seizure and then inject him with radioactive isotopes to see exactly which parts of his brain are being affected by the seizure.
In July they will look more closely at surgery again. It will really just depend upon what all of the tests show. We are praying that God's will will be done and that we will accept what He has planned for us.
Thank you for all of your support and especially the prayers! We will update again later!
We got to talk to Dr. Elkay this morning. She read Cutter's EEG from yesterday and saw no signs of any seizures! She did see what is called "the tendency to have seizures" but no seizures resulted from any of those events. The plan for this visit is to do monitoring for the next day or so, do some medication adjustments and go home.
At UNCCH they are getting a new epilepsy center with better equipment and better monitoring. This will be in July. She plans to have us back then for more monitoring. Between now and then we need to come back for a neuro-psych evaluation to see how Cutter is doing developmentally. We will also have to come back for a FMRI, which is a procedure where they will wait for Cutter to have a seizure and then inject him with radioactive isotopes to see exactly which parts of his brain are being affected by the seizure.
In July they will look more closely at surgery again. It will really just depend upon what all of the tests show. We are praying that God's will will be done and that we will accept what He has planned for us.
Thank you for all of your support and especially the prayers! We will update again later!
Sunday, March 18, 2012
Chapel Hill
Hello Friends!
We made it to Chapel Hill just fine! (The trip was not super fun because Cutter cried the WHOLE time, but that is okay. We made it in one piece!) Cutter is hooked up for his video EEG and will be for the next three days. We have not seen any seizures since we arrived. Hopefully, it will stay that way! We have not seen his pediatric neurologist yet. I am assuming we will see her tomorrow and figure out the plan for the next three days.
Cutter is doing great. Well, as great as a two year old could be expected to do! Hooking him up for his EEG was awful, but it was not as bad as it usually is. He is confined to the room because of the length of his wires but we get to bring toys from the playroom in here. Maverick has done well, too. He gets to stay with us in the room, thank goodness!
I will update more tomorrow as soon as we here anything! Thank you SOOO much for all of the prayers and support!
We made it to Chapel Hill just fine! (The trip was not super fun because Cutter cried the WHOLE time, but that is okay. We made it in one piece!) Cutter is hooked up for his video EEG and will be for the next three days. We have not seen any seizures since we arrived. Hopefully, it will stay that way! We have not seen his pediatric neurologist yet. I am assuming we will see her tomorrow and figure out the plan for the next three days.
Cutter is doing great. Well, as great as a two year old could be expected to do! Hooking him up for his EEG was awful, but it was not as bad as it usually is. He is confined to the room because of the length of his wires but we get to bring toys from the playroom in here. Maverick has done well, too. He gets to stay with us in the room, thank goodness!
I will update more tomorrow as soon as we here anything! Thank you SOOO much for all of the prayers and support!
Tuesday, March 13, 2012
March Update
Hello Friends,
Cutter is doing wonderfully! He has not had a seizure in three weeks! Praise the Lord! He continues to be such a joy and a hoot to be around. He loves his little brother, that is for sure! This two year old phase is not always fun, but we are getting through it! Ha, Ha! Since they lowered the Keppra we have seen an improvement in his behavior, so that is a definite plus. Now we know why he pitches fits (because he wants something or he cannot get us to understand him)! It has been awhile since he has gotten really angry and had "Keppra-rage."
We will be leaving for Chapel Hill on Sunday and will be there for three days. Since Cutter is not currently having seizures (that we can visibly see) we are not sure how this trip is going to go.
We can't believe how much Cutter has grown. He is now 26 months old and getting so big. He is potty training and learning to talk more. He is a wonderful little boy and quite a character.
We will keep you updated about our Chapel Hill trip! Please continue to pray!
Cutter is doing wonderfully! He has not had a seizure in three weeks! Praise the Lord! He continues to be such a joy and a hoot to be around. He loves his little brother, that is for sure! This two year old phase is not always fun, but we are getting through it! Ha, Ha! Since they lowered the Keppra we have seen an improvement in his behavior, so that is a definite plus. Now we know why he pitches fits (because he wants something or he cannot get us to understand him)! It has been awhile since he has gotten really angry and had "Keppra-rage."
We will be leaving for Chapel Hill on Sunday and will be there for three days. Since Cutter is not currently having seizures (that we can visibly see) we are not sure how this trip is going to go.
We can't believe how much Cutter has grown. He is now 26 months old and getting so big. He is potty training and learning to talk more. He is a wonderful little boy and quite a character.
We will keep you updated about our Chapel Hill trip! Please continue to pray!
Sunday, February 19, 2012
Latest Update
Hello Friends,
It is a lot harder to update Cutter's blog now that we have a new little one in the house! Cutter is continuing to have seizures, almost daily. There have been a few days since Dec. 3rd that he has not had seizures, though. He has had over 600 since December 3rd. We went back to the doctor two weeks ago and had another EEG. His EEG is still the same. We were thankful to see that his seizures are still starting in the same place, on the right side of his brain. Dr. Huffstutter's recommendation was to go back to Chapel Hill to discuss surgery once again. So, as of right now, we will be going back to Chapel Hill on March 18th for a 3 day video EEG. We are a little trepidatious about this trip, as we will have Maverick with us, too, and we are not sure what all tests he will have to go through.
We will update again soon. Please keep us in your prayers!
It is a lot harder to update Cutter's blog now that we have a new little one in the house! Cutter is continuing to have seizures, almost daily. There have been a few days since Dec. 3rd that he has not had seizures, though. He has had over 600 since December 3rd. We went back to the doctor two weeks ago and had another EEG. His EEG is still the same. We were thankful to see that his seizures are still starting in the same place, on the right side of his brain. Dr. Huffstutter's recommendation was to go back to Chapel Hill to discuss surgery once again. So, as of right now, we will be going back to Chapel Hill on March 18th for a 3 day video EEG. We are a little trepidatious about this trip, as we will have Maverick with us, too, and we are not sure what all tests he will have to go through.
We will update again soon. Please keep us in your prayers!
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