Post by Amy Lombardi on Apr 1, 2009 8:25:15 GMT -5
Subject: Becoming more unsteady and shaking
Name: Chris Geer
Date Posted: Dec 3, 08 - 9:40 AM
Email: Click here to Email
Message: Given Jacob's history is not typical of a Batten child, he has always had issues with his gait. Now I am finding him being more unsteady. We have noticed his hands have been shaky a lot lately too. We had a recent Depakote increase but that was a bit ago and the shaking was going on before that. We ran bloodwork to check everything and all was fine in that area. The shaking seemed to have improved but now it's back and very noticable. We do notice it being more pronounced after waking in the morning and after naps. We are pretty sure we have been having more seizure activity lately. He's had some strange episodes along with his typical eye rolling. He is having another VEEG next month so we will not increase (actually on the max dose of Depakote), change or add to his seizure med at this time. Could this mean we are seeing some progression of the disease? His last MRI was a yr ago and it was still normal. I'm wondering if he should have another. His Neuro will order and do whatever I ask as he says we know more about this disease than he does at this point. I am fearful of having one if there are possible changes. That leads me to also ask, how do you get through all of this? I am so scared to watch what this disease is going to do to him. How do you get through each step? In the past, I have been able to accept that Jacob was never going to hit all his milestones or when he did hit some, they would be late. I have accepted him eating through a tube. It's just a part of who he is. When he does things right now, we still rejoice in each accomplishment (recently buttoned a button for the first time, although he has not been able to since!). We have always called what he does as inchstones not milestones. They are even bigger to celebrate (if that makes sense) but in the back of my head, I am wondering when all that will be taken away. I am having a hard time going through holidays wondering how many more I will have with him. Wondering if I do get more, what will he be like. I wish I could spend more time with him (yet with his behaior I need a break too!) but I have 3 other kids to care for. I just don't know how I am supposed to feel. Sorry if I am rambling! Lots going on in my head!
Name: shannon
Date Posted: Dec 3, 08 - 10:27 AM
Email: Click here to Email
Message: Hi Chris-
Nolan went through a phase of shaking hands. Early on though. He would reach out for things and have a hard time grabbing on. This has passed at this point, as he is more clenched in the hands and doesn't reach for things as much as he used to. We thought maybe it was due to his meds, but now we know it most likely was not. Nolan has had two MRI's done. 18 months apart. The first was normal and the second showed atrophy in the cerebellum. What gets us through our day to day is that we have accepted what has happened and what will happen in the future. We try to enjoy all that is good and not get too bent out of shape when things don't go so good. Nolan met several milestones. Seizures came at age 3. Then nothing more until he was just shy of age 4 when we started seeing behavior and learning issues. Then about 3 months after turning 4 he started going backwards. He is now 5 1/2 and has lost most of his physical abilities. Good luck!
Name: Janie
Date Posted: Dec 3, 08 - 3:03 PM
Email: Click here to Email
Message: My Chris has Juv. A long time ago I began the ritual of the “hug”. Wait a minute, I need my hug!!!! Now my son is much taller than me at 18. What I’m trying to say, is when I get out of control over seizures, his declines, or anything that is very upsetting….. I go for the hug. It makes me feel better, and I can also “feel” how shaky he is. Then I know a little bit more how to proceed. It seems to calm us both down for the moment and I’m sure it works for Dad’s too! Take a deep breath together. It only take a few minutes and thing will hopefully seem better.
Name: Glenda Flatt
Date Posted: Dec 3, 08 - 5:52 PM
Message: Jacob sounds so much like our Nicholas. He is going thru a very shaky phase and has been for quite awhile. We just figured that this is part of Batten's. He is on Depakote, too. 3 Sprinkle tabs AM and PM. He is still having seizures, the other day his teacher said that he had a 5 minute seizure! He gets really shakey when he tries to do anything. Doesn't move around at all now, just sits still and plays. We walk him, but then he gets really nervous.
Would love to know where to go from here!
Glenda
Name: Trichelle Watkins
Date Posted: Dec 6, 08 - 6:22 AM
Email: Click here to Email
Message: Our daughter, Hunter, went through the shaking and the terrible gait also. Someone had to follow her constantly because she would fall all of the time. She was on depakote and tegratol at the time. The shakyness wasn't undercontrol at all until her neurologist put her on clonazepam. The combination worked. We would have to increase the dose on the clonazepam from time to time but for her that worked.
i can definately empathise with you about feeling anxious about what is up ahead for your son. I am a person that likes to know what is comming and have a plan of attack to be able to battle it. I remember feeling very scared and frusterated over the situation. I didn't want this to happen to her. I remember the year she stopped enjoying her birthdays, Christmas. It was so hard to buy presents for her knowing she won't know what to do with them and she didn't. What advise would I give to you about your son and these events is that you don't know when he will no longer enjoy them so charish each and every one. We made sure to record all of those events so we can now watch them on video. I know it doesn't take away the feelings of loss that way but at least it is not just a memory it is something more tangable that you can actually see.
I know it is hard to stay possitive through all of this but you can. I adopted Dori's motto from Finding Nemo when she is telling marlin to just keep swimming, just keep swimming, swimming, swimming.... So that is what I did I swam and when I was too tired or frusterated to swim I would get on my back and float. There is also a quote that I love. It is simply this "Life is not about waiting for the storm to pass, it's about learning to dance in the rain." Take your son and make every memory you can for him as well as your family. It will be all you have when he is gone. Our family remembers those good times often since Hunter's passing. Good Luck and stay strong and remember to just keep swimming.
Name: Kim Pederson
Date Posted: Dec 8, 08 - 2:30 PM
Email: Click here to Email
Message: Chris and all who rage against Battens,
My heart goes out to you. I remember the fear. I have no answer for you, at least not one that can equalize what you are feeling.
Love him. He will love you back with everything he has. And when the day is through, you will see him again. Whole and strong.
This disease comes from the bowels of he** I'm sure. However, our children hold a special place among the angels. I feel and hear my angel every day. There is no doubt in my mind that he has a special place among all the other angels.
In the meantime, keep on going. And like that stupid country song (which I don't even like) says, when you're going through he** keep on going.
My thoughts are with you and Jacob.
Love, Adam's mom
Name: Chris Geer
Date Posted: Dec 3, 08 - 9:40 AM
Email: Click here to Email
Message: Given Jacob's history is not typical of a Batten child, he has always had issues with his gait. Now I am finding him being more unsteady. We have noticed his hands have been shaky a lot lately too. We had a recent Depakote increase but that was a bit ago and the shaking was going on before that. We ran bloodwork to check everything and all was fine in that area. The shaking seemed to have improved but now it's back and very noticable. We do notice it being more pronounced after waking in the morning and after naps. We are pretty sure we have been having more seizure activity lately. He's had some strange episodes along with his typical eye rolling. He is having another VEEG next month so we will not increase (actually on the max dose of Depakote), change or add to his seizure med at this time. Could this mean we are seeing some progression of the disease? His last MRI was a yr ago and it was still normal. I'm wondering if he should have another. His Neuro will order and do whatever I ask as he says we know more about this disease than he does at this point. I am fearful of having one if there are possible changes. That leads me to also ask, how do you get through all of this? I am so scared to watch what this disease is going to do to him. How do you get through each step? In the past, I have been able to accept that Jacob was never going to hit all his milestones or when he did hit some, they would be late. I have accepted him eating through a tube. It's just a part of who he is. When he does things right now, we still rejoice in each accomplishment (recently buttoned a button for the first time, although he has not been able to since!). We have always called what he does as inchstones not milestones. They are even bigger to celebrate (if that makes sense) but in the back of my head, I am wondering when all that will be taken away. I am having a hard time going through holidays wondering how many more I will have with him. Wondering if I do get more, what will he be like. I wish I could spend more time with him (yet with his behaior I need a break too!) but I have 3 other kids to care for. I just don't know how I am supposed to feel. Sorry if I am rambling! Lots going on in my head!
Name: shannon
Date Posted: Dec 3, 08 - 10:27 AM
Email: Click here to Email
Message: Hi Chris-
Nolan went through a phase of shaking hands. Early on though. He would reach out for things and have a hard time grabbing on. This has passed at this point, as he is more clenched in the hands and doesn't reach for things as much as he used to. We thought maybe it was due to his meds, but now we know it most likely was not. Nolan has had two MRI's done. 18 months apart. The first was normal and the second showed atrophy in the cerebellum. What gets us through our day to day is that we have accepted what has happened and what will happen in the future. We try to enjoy all that is good and not get too bent out of shape when things don't go so good. Nolan met several milestones. Seizures came at age 3. Then nothing more until he was just shy of age 4 when we started seeing behavior and learning issues. Then about 3 months after turning 4 he started going backwards. He is now 5 1/2 and has lost most of his physical abilities. Good luck!
Name: Janie
Date Posted: Dec 3, 08 - 3:03 PM
Email: Click here to Email
Message: My Chris has Juv. A long time ago I began the ritual of the “hug”. Wait a minute, I need my hug!!!! Now my son is much taller than me at 18. What I’m trying to say, is when I get out of control over seizures, his declines, or anything that is very upsetting….. I go for the hug. It makes me feel better, and I can also “feel” how shaky he is. Then I know a little bit more how to proceed. It seems to calm us both down for the moment and I’m sure it works for Dad’s too! Take a deep breath together. It only take a few minutes and thing will hopefully seem better.
Name: Glenda Flatt
Date Posted: Dec 3, 08 - 5:52 PM
Message: Jacob sounds so much like our Nicholas. He is going thru a very shaky phase and has been for quite awhile. We just figured that this is part of Batten's. He is on Depakote, too. 3 Sprinkle tabs AM and PM. He is still having seizures, the other day his teacher said that he had a 5 minute seizure! He gets really shakey when he tries to do anything. Doesn't move around at all now, just sits still and plays. We walk him, but then he gets really nervous.
Would love to know where to go from here!
Glenda
Name: Trichelle Watkins
Date Posted: Dec 6, 08 - 6:22 AM
Email: Click here to Email
Message: Our daughter, Hunter, went through the shaking and the terrible gait also. Someone had to follow her constantly because she would fall all of the time. She was on depakote and tegratol at the time. The shakyness wasn't undercontrol at all until her neurologist put her on clonazepam. The combination worked. We would have to increase the dose on the clonazepam from time to time but for her that worked.
i can definately empathise with you about feeling anxious about what is up ahead for your son. I am a person that likes to know what is comming and have a plan of attack to be able to battle it. I remember feeling very scared and frusterated over the situation. I didn't want this to happen to her. I remember the year she stopped enjoying her birthdays, Christmas. It was so hard to buy presents for her knowing she won't know what to do with them and she didn't. What advise would I give to you about your son and these events is that you don't know when he will no longer enjoy them so charish each and every one. We made sure to record all of those events so we can now watch them on video. I know it doesn't take away the feelings of loss that way but at least it is not just a memory it is something more tangable that you can actually see.
I know it is hard to stay possitive through all of this but you can. I adopted Dori's motto from Finding Nemo when she is telling marlin to just keep swimming, just keep swimming, swimming, swimming.... So that is what I did I swam and when I was too tired or frusterated to swim I would get on my back and float. There is also a quote that I love. It is simply this "Life is not about waiting for the storm to pass, it's about learning to dance in the rain." Take your son and make every memory you can for him as well as your family. It will be all you have when he is gone. Our family remembers those good times often since Hunter's passing. Good Luck and stay strong and remember to just keep swimming.
Name: Kim Pederson
Date Posted: Dec 8, 08 - 2:30 PM
Email: Click here to Email
Message: Chris and all who rage against Battens,
My heart goes out to you. I remember the fear. I have no answer for you, at least not one that can equalize what you are feeling.
Love him. He will love you back with everything he has. And when the day is through, you will see him again. Whole and strong.
This disease comes from the bowels of he** I'm sure. However, our children hold a special place among the angels. I feel and hear my angel every day. There is no doubt in my mind that he has a special place among all the other angels.
In the meantime, keep on going. And like that stupid country song (which I don't even like) says, when you're going through he** keep on going.
My thoughts are with you and Jacob.
Love, Adam's mom