Hello all! I hope everyone had a wonderful holiday filled with love and family!
Nothing too new to report on Mr. Carter. Since my last post, he started his new school, which he loves and it is going great! In September we tried a different type of therapy to treat his ESES called IVIG.... He had a follow up EEG in October and it yet again remained unchanged. On the up side, he had been "daytime" seizure free since the end of July... until last Saturday when he had 2 of them, but it had been 4 months which is still a good chunk of "having control". He also, in October started focalin, which is a behavior medication, and it seems to be working very well! We saw his Neurologist on Wednesday and the current plan is to go up on one of his anti convulsants and see how he does over the next few months, if he continues on his seizure free streak we will see about looking into other treatments for his ESES.
Happy Winter Everyone!
Nicole
Friday, January 4, 2013
Wednesday, August 15, 2012
Happy Summer everyone! Again, sorry for the delay in posting...
Carter has had control of clinical seizures since May so his Dr. thought it was time he had another EEG which unfortunately was, yet again, unchanged. We are currently discussing other alternative options of treatment for the ESES with his Dr. , Steroids and IVIG were the first ones he threw out there. Because of his already aggressive behavior we don't think steroids is best at this time, so we are looking further into the IVIG.
Carter has had 4 clinical seizures over the past couple days, which is very disheartening since he had such a nice "break" from them. This unpleasant return could be because we are in the progress of weaning him off of one of his meds, Vimpat. We, along with his Dr., feel that because he is on such a low dose of the Vimpat , it may be time to remove it in order to make room for the possibility of another, whether it be for seizure control or behavior control.
I keep mentioning Carters behaviorr and I just want to take a moment and share a few things with you regarding that matter. The majority of you know Carter as outgoing, happy and very active. He still is all of those things, however he has become more aggressive and hyperactive. Some may describe him now as just plain rude and mean. Unfortunately, this is product of his condition and meds he is currently on. We are currently working with his Dr. as well as therapist to develop a " plan of action" , he will also be seen by a psychiatrist for a behavorial medicine evaluation. This change in behavior is very hard on both families, and as we don't really want to keep "pumping him full of meds" we feel it is time to start excercising that option. Carters continual regression in Academics and IQ are very difficult to deal with , its hard to wrap your head around the fact that our 9 year old boy has the mentality of a 5 year old, if not younger. We thought the seizures were the worst of our worries, but unfortunately they were just the tip of the iceberg we hit head on a little over 2 years ago. This is very challenging and overwhelming for all of us and we appreciate your continued support and understanding during this time.
Much love,
Nicole
Carter has had control of clinical seizures since May so his Dr. thought it was time he had another EEG which unfortunately was, yet again, unchanged. We are currently discussing other alternative options of treatment for the ESES with his Dr. , Steroids and IVIG were the first ones he threw out there. Because of his already aggressive behavior we don't think steroids is best at this time, so we are looking further into the IVIG.
Carter has had 4 clinical seizures over the past couple days, which is very disheartening since he had such a nice "break" from them. This unpleasant return could be because we are in the progress of weaning him off of one of his meds, Vimpat. We, along with his Dr., feel that because he is on such a low dose of the Vimpat , it may be time to remove it in order to make room for the possibility of another, whether it be for seizure control or behavior control.
I keep mentioning Carters behaviorr and I just want to take a moment and share a few things with you regarding that matter. The majority of you know Carter as outgoing, happy and very active. He still is all of those things, however he has become more aggressive and hyperactive. Some may describe him now as just plain rude and mean. Unfortunately, this is product of his condition and meds he is currently on. We are currently working with his Dr. as well as therapist to develop a " plan of action" , he will also be seen by a psychiatrist for a behavorial medicine evaluation. This change in behavior is very hard on both families, and as we don't really want to keep "pumping him full of meds" we feel it is time to start excercising that option. Carters continual regression in Academics and IQ are very difficult to deal with , its hard to wrap your head around the fact that our 9 year old boy has the mentality of a 5 year old, if not younger. We thought the seizures were the worst of our worries, but unfortunately they were just the tip of the iceberg we hit head on a little over 2 years ago. This is very challenging and overwhelming for all of us and we appreciate your continued support and understanding during this time.
Much love,
Nicole
Monday, March 12, 2012
Wow, its been awhile!!!!
When I started the blog, I had every intention of posting at least once a week, well life sorta got in the way of that plan! But I am happy to say that he has been doing well the last couple of months. He did have a few more seizures since my last post, a couple of them being illness related, but for the most part things are looking positive. We aren't exactly in the clear and he hasn't had another EEG to see whats going on while he sleeps, the Dr. wants him seizure free for about 6 months before we schedule one. He continues to struggle greatly in school, he goes to 3 different resource rooms daily to try and get him on the right path, but we have seen little to none improvement. Its hard to tell whether its the seizures or medications that are interfering with academics, but I would take a seizure free Carter over a super scientist genius Carter anyday.
He has an appointment the first week in April, just a regular check up with his neurologist, but if he stays seizure free, maybe we will talk about another EEG.
As always, thank you for the love and support!
Nicole
When I started the blog, I had every intention of posting at least once a week, well life sorta got in the way of that plan! But I am happy to say that he has been doing well the last couple of months. He did have a few more seizures since my last post, a couple of them being illness related, but for the most part things are looking positive. We aren't exactly in the clear and he hasn't had another EEG to see whats going on while he sleeps, the Dr. wants him seizure free for about 6 months before we schedule one. He continues to struggle greatly in school, he goes to 3 different resource rooms daily to try and get him on the right path, but we have seen little to none improvement. Its hard to tell whether its the seizures or medications that are interfering with academics, but I would take a seizure free Carter over a super scientist genius Carter anyday.
He has an appointment the first week in April, just a regular check up with his neurologist, but if he stays seizure free, maybe we will talk about another EEG.
As always, thank you for the love and support!
Nicole
Monday, September 5, 2011
Hello Everyone!
Since my last blog Carter has continued to have seizures. He had at least one every week in July. We had a good run in August without him having one but the last week or so he has had 3, which is upsetting since he will be starting school on Wednesday. The thought of sending him to school makes me sick. He could have a seizure at any time.
Last week the Dr's increased the morning depakote dose. Sometimes a med change can trigger a seizure, not sure if thats the case or not since they are all happening in the morning around the same time he takes his meds. He has labs in a couple weeks and a follow up November.
Thats about it for now! Take care all!
Since my last blog Carter has continued to have seizures. He had at least one every week in July. We had a good run in August without him having one but the last week or so he has had 3, which is upsetting since he will be starting school on Wednesday. The thought of sending him to school makes me sick. He could have a seizure at any time.
Last week the Dr's increased the morning depakote dose. Sometimes a med change can trigger a seizure, not sure if thats the case or not since they are all happening in the morning around the same time he takes his meds. He has labs in a couple weeks and a follow up November.
Thats about it for now! Take care all!
Tuesday, July 5, 2011
WOW! Its been awhile! I am sorry, when I started this blog I had every intention of posting every week at least. Yeah.... that hasn't worked out so well!
As I mentioned in my previous post, Carter has been seeing Dr. Kuratani , an epilepsy specialist and he added a new medication ( depakote ) . Carter had a seizure at school the morning of May 25th, aside from typical post seizure, he returned to his normal self quite a bit sooner than usual. We had a scheduled appointment with Dr. Kuratani on June 14th, at which he increased his depakote dose. That night Carter must have had a nightmare or sensed he was going to have one because I awoke to him on my floor at around 2am having a seizure. I didn't even know he was in my room! But at some point he had gotten some blankets and made himself a bed on my floor. The next morning we started the depakote increase. He seemed to be doing well at first but after a week his behavior started to go downhill, as well as his back/muscles hurting, he became more agitated and showing odd behavior such as biting himself. Last Friday he had another seizure. I spoke with Dr. Richardson and he had Carter come in and get more blood drawn to do more testing. We are still waiting on the Lamictil levels ( which is he is expecting to be high ) but everything else came back normal. Could be side effects of the depakote or the depakote increase may have brought his lamictil level too high. Either way, we were urged to go back to the original depakote increase. Early this afternoon he had another seizure with Ryan and Holly. The Dr did say the change in dose could cause a seizure within the next couple days, that was Saturday and this is Tuesday so who knows. I have a call into him and hopefully will hear back tonight or tomorrow. It is so frustrating that we can not find a medication to control this! Just when you think its safe to breathe again...its not. And having to miss work every other week is like kicking you when your down.. I am dreaming of a more stable and normal future, whenever that may be.
Happy Summer!
As I mentioned in my previous post, Carter has been seeing Dr. Kuratani , an epilepsy specialist and he added a new medication ( depakote ) . Carter had a seizure at school the morning of May 25th, aside from typical post seizure, he returned to his normal self quite a bit sooner than usual. We had a scheduled appointment with Dr. Kuratani on June 14th, at which he increased his depakote dose. That night Carter must have had a nightmare or sensed he was going to have one because I awoke to him on my floor at around 2am having a seizure. I didn't even know he was in my room! But at some point he had gotten some blankets and made himself a bed on my floor. The next morning we started the depakote increase. He seemed to be doing well at first but after a week his behavior started to go downhill, as well as his back/muscles hurting, he became more agitated and showing odd behavior such as biting himself. Last Friday he had another seizure. I spoke with Dr. Richardson and he had Carter come in and get more blood drawn to do more testing. We are still waiting on the Lamictil levels ( which is he is expecting to be high ) but everything else came back normal. Could be side effects of the depakote or the depakote increase may have brought his lamictil level too high. Either way, we were urged to go back to the original depakote increase. Early this afternoon he had another seizure with Ryan and Holly. The Dr did say the change in dose could cause a seizure within the next couple days, that was Saturday and this is Tuesday so who knows. I have a call into him and hopefully will hear back tonight or tomorrow. It is so frustrating that we can not find a medication to control this! Just when you think its safe to breathe again...its not. And having to miss work every other week is like kicking you when your down.. I am dreaming of a more stable and normal future, whenever that may be.
Happy Summer!
Tuesday, April 5, 2011
Hello everyone! Since my last post we have done some tweaking to Carter's meds. Back in January his lamotrigine changed manufacturers. At first I didn't really think anything of it. But once he started having more daytime seizures I started to wonder about it. I asked his Dr a couple of times but never really got the feeling he was concerned. Well, as you could tell from my last post, I had enough, I was encouraged by a friend to look into the manufacturer switch. I called medco and spoke to their pharmacist. She said that it absolutely could cause the spike in seizures, I explained to her that he had the first two in May and then one in September and then nothing until February, only 3 1/2 weeks after the manufacturer switch. She of course couldn't say for sure this was the cause of the increased daytime seizures, but she had other cases where it had. She strongly recommended that we switch back to the old manufacturer, which we did last Thursday. I am hopeful that the switch will help reduce the daytime seizures. It was just too much of a coincidence that 3 weeks after the change he had a cluster of seizures and then each time his Dr increased his dose, he would have another.
We also met with the epilepsy specialist today. He is adding a new medication that he believes could take care of his daytime seizures and his nighttime ones. Of course he can't say for sure that it will work, but I am hopeful. We will reduce the lamotrigine dose and keep the vimpat for now, but don't think it will stay on as part of the long term plan ( vimpat ).We will meet with him in a couple months to check his progress. In the meantime Carter needs to be closely supervised as we do not have control of seizures right now. We had a good talk with him and got some good information. He believes Carter is having complex-partial seizures, meaning only part of the brain is seizing, this does not mean however that these are the only types he will have, he has already had a few absent seizures ( staring spells ) and it is a possibility he could have a grand mal seizure. This new medication ( should it work ) would be control for both partial and general ( grand mal ) seizures, as well as the ESES. I am feeling very optimistic about this... I just have a good feeling :)
Have a great night everyone and keep the prayers coming!
Nicole
We also met with the epilepsy specialist today. He is adding a new medication that he believes could take care of his daytime seizures and his nighttime ones. Of course he can't say for sure that it will work, but I am hopeful. We will reduce the lamotrigine dose and keep the vimpat for now, but don't think it will stay on as part of the long term plan ( vimpat ).We will meet with him in a couple months to check his progress. In the meantime Carter needs to be closely supervised as we do not have control of seizures right now. We had a good talk with him and got some good information. He believes Carter is having complex-partial seizures, meaning only part of the brain is seizing, this does not mean however that these are the only types he will have, he has already had a few absent seizures ( staring spells ) and it is a possibility he could have a grand mal seizure. This new medication ( should it work ) would be control for both partial and general ( grand mal ) seizures, as well as the ESES. I am feeling very optimistic about this... I just have a good feeling :)
Have a great night everyone and keep the prayers coming!
Nicole
Tuesday, March 29, 2011
Carter had a good weekend, but had another seizure at the end of his school day yesterday and another later in the evening. I gave him the lorezapam ,as his Dr and I discussed last week. Hasn't had another seizure but his arm is doing the shaking thing it randomly has been doing lately, which makes me nervous because he usually does it around the time he has the seizures. I am really struggling to keep it together today. It's really hard to watch my 8 year old son go from being a normal kid to one who is struggling to learn in school and remember simple things like what he named his goldfish. And thats just the icing, watching him have a seizure is like having someone rip my heart out, stomp on it and throw it back in. You would think it would get easier the more he has, wrong, it gets worse because that means he is not improving. This has been going on for what feels like forever.All morning I have been crying and wondering, why is he not getting better, why is the medicine not working. But then I feel guilty for doing so because I know there are kids out there that have a more intense seizure disorder than Carter and I know his situation could be worse. But to me, this is worse, this is life changing. My son is regressing and I can't stop it. After every seizure, he doesn't talk, if he tries to, the words come out slow and you can barely understand him. Everytime I wonder if this will be the time that he doesn't get his speech back. He is in a downward spiral with this stupid disease and I fear that if we don't stop it soon, we will lose him forever, or at least lose the Carter we all know. I know that I am a pessimist to the core, I don't think that any one of you reading this would disagree with that, but how in the heck am I supposed to think positively at this point? I have tried this whole time to stay calm, have faith in the Dr's and think rationally. I am mentally and physically exhausted , I am having nightmares and horrific visions during the day, the other day I spaced out while tanning ( yes I know, slap on the wrist ) and pretty much envisioned the aftermath of Carter's death. I'm not saying that I think he is going to die but that is how "rational" my thinking is these days. Hmmm..... sorry I somehow have made this post about me... oh dear. It did feel good to get that out though.
Thanks for listening...
Nicole
Thanks for listening...
Nicole
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