Post by Amy Lombardi on Apr 16, 2009 15:54:00 GMT -5
Subject: Aggressive Behavior
Jill
Feb 7th, 2009 - 5:35 AM
Hi all! Here I am posting again about behavior challenges we continue to have with our son Nicholas (age 7, late onset INCL).
For those of you who have delt with major behavior outbreaks and uncontrollable aggressive behavior, what do you do in these situations??
This seems to be happening more and more to the point we are seeing it almost everyday. My other two children are scared and ready to move out of the house (I'm worried about my oldest (11) the most who has become very reserved and sad).
Has anyone ever called the parametics to come to the rescue?
I feel like I need to have him admitted to the hospital for observation to help with this?
His psych doctors haven't been very helpful and don't want to change up his meds.
I'm about to crack myself and would love any suggestions you have.
Thanks again for everyones great input in the past and look forward to hear what else we can try.
Jill Wellner
Waterloo, Iowa
Nori
Feb 7th, 2009 - 8:48 AM
Hi Jill, I feel so sorry that this is happening to your family. In my opion, it was the worst part of the whole disease process. One of my two sons with JNCL (both deceased) had such aggressive behavior that we had to place him in a group home for a while to protect the other children and for our sanity. I'm not suggesting you do that, but it is always an option. He would throw anyting he could get his hands on and throw them at someone. One time he was playing outside and threw a brick at our 3 year old, which resulted in stitches and a huge goose egg. He would attempt to get knives out of the drawer the whole time screaming that he was going to "get a knife and kill you". I could go on for hours about the things he did. Yes there were times when I was tempted to call 911, but there would have been nothing they could do. We tried everyting including many different medications and behavior modification programs. All the medication did was make him fall asleep very briefly many, many times all day long. Each time he would wake up screaming and kicking even worse than before the nap. He was still up all night and doing things like tipping over furniture and slugging his sleeping brother in the face because he could hear him breathing. He just got madder and madder at the behavior mod things we tried. The one thing that did help was to have a room with little to nothing in it that we could lock him in while he was having an outburst. I know that sounds harsh, but having no one to interact with during these outbursts makes them decelerate faster. We even had a small window put in the door so we could watch him the whole time without him knowing. I or my husband would stand by the door watching the whole time he was in there. The longest he was in there was 20 minutes, whereas when we tried to control him outside it would often go on for 3 hours or more. It got so that nearly as soon as he went in he stopped. Think how miserable he must be during these times let alone the rest of the family. All I can tell you is that it did pass, but it was bad for over 10 years. The funny thing was that even during his last few years when he could hardly do anything or speak he would still swear at us occasionally. His last word on this earth was "pregnant dog". We can laugh about it now, but it nearly cost us our minds and our family.
Good Luck, and don't stop looking for help!
Tina Heuchan
Feb 8th, 2009 - 6:05 AM
We are also have trouble with Nicholas 12 jncl Behavior
We just introduced zoloft and about 10 days later he had his first seizure. He still takes abilify. When he starts to go into meltdown our Psyc said to give him a dose on benadryl. if we can remember early enough..like at the start. Dont know what is in it but sometimes it works...other times it doesnt.. thats when everyone goes into time out ... I sent all to there rooms me included. This just keeps us from feeding into the anger by just repeating ourselves.. I dont know the "right" answer and I dont always know if we are doing the right things. but it works for now.. and it had helped as thingd dont get broken as much..Sometimes they just need time to process and cool down without me badgering him. Then he is like I sorry i love you and its like it never happened....I am left feeling like I just exited the twilight zone. because he is over it and we are like what just happened... but the thing I guess I get upset about is I get tired of picking up the mess over and over and over.
Nori--We have an appointment with behavior specialist. I am open to suggestions because our Psyc has none. I am not real confident but am hopeful that this behavior spec. is going to work. they just observe and give you a plan. But Nicholas's instruction manual was lost somewhere I think when he was around 5 years old and the guidelines for how we correct and work with Addie dont work with him.
so are you saying this behavior person isnt going to work??? ill give it a shot...
Glenda Flatt
Feb 7th, 2009 - 8:50 AM
We totally understand. We are going thru the same thing right now. We have a 3 yr old daughter, and she doesn't understand at all. She can't even speak or any of us as far as that goes...it just sets our Nicholas off. He has JNCL and is 15. Right now is a really bad time for us. We have changed his med to Lithium and we are doing Buspar and Xanax, these do help some and his tolerance is so strong that it doesn't make him "dopey".
We have just started the Lithium so I'm not sure if it will help.
I'm sorry that you are having a hard time, if ever you need to talk my # is 606-423-0006.
Take care!
Glenda
Somerset,KY
Jill
Feb 7th, 2009 - 12:20 PM
Wow, thank you! Nori, our situation sounds exactly like yours. It made me cry knowing that someone actually understands what we are going thru! We have tried a safe room for our other children because we don't have a safe enough environment for Nicholas to be alone in.
Glenda, I'm sorry you are dealing with this, too. It's so hard to watch our once happy child go thru this. Please keep me posted on how the new meds work.
I did just read that there is a study and clinical evaluation in Rochester, NY. Have either of you(or anyone else) taken your children there?
Thank you again for your responses.
Jill
Glenda Flatt
Feb 7th, 2009 - 12:42 PM
Jill,
We took Nicholas last Summer to Rochester and now we are getting ready to go see a Neurologist in Birmingham, AL on Thursday. My email address is glendaflatt@yahoo.com please email me and we'll talk.
Glenda
Joe Allio
Feb 8th, 2009 - 4:41 AM
Nori describes our 10 year old Annie JNCl very well! We startd her on Lithium about 8 months ago and have had very good results. Her Pshyc Dr. said Lithium should not work but she was willing to try anything. For months now Annie has been a happy blind 10 year old. Last year we had to pick her up at school 3 out of 5 days for violent behavioe. This year she has only come home 1 day since school started. I realize that all of our kids react differently to various meds, This one is working "for now" for us.
Jill
Feb 8th, 2009 - 1:32 PM
Joe, keep me posted on if the Lithium continues to work for you guys. I had suggested this to one of the docs, but he wasn't sold on the idea...
Nori
Feb 8th, 2009 - 2:00 PM
To Jill and Glenda in particular,
Keep in mind that Tyson would be 35 years old right now so all this behavior stuff was a long time ago. There have been leaps and bounds in the development of psycotropic medications since then and I believe it would be well worth trying. All we had to use was things like Thorazine and Valium etc. The last time we ever used Valium on Tyson he was awake for 36 hours straight screaming and fighting the whole time. I also think that the behavior modification programs have to be tried. Just know that it does not work the way they predict on a lot of Batten kids because their problem is a physical one (brain damage) rather than a mental illness. The one thing we can all count on with our kids is that no two are exactly alike. Just keep trying and remember to love them while you've got them even if they call you a **********
Joe Allio
Feb 14th, 2009 - 7:05 PM
Hello Jill, Lance has a few other family names also that have had success with Lithium which is how we became aware. Our Doctor was also of the opinion that Lithium was a long shot. If we can be of any help feel free to give our name to your doctor if he/she is interested in how this has helped us. God Bless...Joe
Joan Ditmar
Feb 10th, 2009 - 9:50 AM
Hi Jill, Our 13 year old son, Mitchell has JNCL with Behavior problems. While it is not to the level of Nicholas, we have our issues! Originally Mitchell was on Risperdol only, but now we have him on Risperdol and Lithium. I so can relate to the other postings, too, of the anger of threatening to kill someone, and then two minutes later, "I'm sorry, do you forgive me?" Breaks my heart. We have to tell him "apology accepted", or he starts crying. Constant verbal abuse; i.e., idiot, jerk, I hate you, I'll kill you... But I'll tell you, his seizures are controlled with meds at this point and I would much rather be on the receiving end of the verbal abuse, then watch him seize. That being said, his mobility is such that he isn't much of a threat, physically. He does stand about 5 ft 6 in though and weighs about 200 pounds so if he does connect, ouch. Would welcome any opportunity to talk and or email, too. joanditmar@hotmail.com. Take care.
Pat Pfaller
Feb 11th, 2009 - 2:11 PM My daughter Sara, 16, JNCL, also had these violent outbursts, but only at home. She seemed to know she had to be on her best behaviour at school! Anyways, when puberty struck, she really started acting out. I spoke with Lance, and he suggested that these were psychotic episodes, and she would improve with anti-psychotic medication. She has now been on Risperdal for 4 years, and it has helped so much! I tried taking her off of it for a couple of days, and boy, was I sorry! Sara is only on 2 meds; Risperdal and Ativan for seizures.
Sara has lost a lot of weight this year; she went from a women's size 16, and now is down to a 4/6 in jeans. I'm not sure what prompted it, since her original weight gain was from Depakote when she was 9.
Please talk to your doctors about anti-psychotics. It really will help, and very quickly. As hard as it is to perhaps "dope" them so they are docile, it does help with the rest of the family. You have to keep your whole family in mind; especially if you are worried about younger siblings. This is really hard on the whole family. My 18 year old son is now acting out because of the stress of this past year, with so many changes for Sara. She is now wheelchair-bound, can't see anything, and just wants to listen to Disney channel and sleep on the couch when she isn't at school.
Good luck!
Nancy Peterson
Feb 17th, 2009 - 2:53 PM
I send each and everyone of you a hug. I too have walked this road. My David would have been 30 this year. His years from 14 - 20 were pretty ugly at times. Risperdal and ativan were our saving grace. Later valium was substituted for ativan. There are drugs that work and you have to keep fighting. This is not a life for your Batten child, yourself or your family. It is awful and dangerous. One of our dear researchers, Dr. Rosemary Boustany, told me that you have to remember that quality of life is important, but our children are not really enjoying this any more than we do. When it is over, they have the sore bruises or worse that they feel, but don't understand. Safety is very important. My answers always came by way of Lance and his staff. A call from them (especially Nurse Nancy) carries a lot weight with the doctors treating our children. Words do not describe the current situation, it is a hell on earth. Just don't be afraid to be assertive with the medical providers and hopefully get solutions that minimize this stage. David passed through this time with a lot of help from medication. At around 20 he began to pass out of this stage. The last 4 years of his life we did not need anything but phenobarbital and a very low doze of valium to keep him comfortable. Someone said that our children have a completely different reaction to some medicines that other people. Over and over that is proven. And last, but in no way minor, you and the rest of your family need to still be standing and whole when this is over. If you have issues with your non-Batten children, they are just as important and need the same attention. I know it is hard, but very important. We are survivors and none of you are alone. Remember there is great support for your other children and you. Take care. Nancy
teresa
Apr 2nd, 2009 - 8:58 AMI thought I was the only one going through the battle. My son 12 was just diagnosed as NCL3 but for the past 3 years it has been a battle and I have had him transported to the emergency room to get him a shot of ativan to calm him down so many times the doctors there know us by name. He went totally blind at 8 and when he is in those moods that doesn't interfere with him connecting the blows. I have to lock me and my daughter in rooms where he could not get to us till help would arrive. Then have to clean up the mess after we got back. Its sad that others have to go through this to but glad to know it just isn't me.
Jill
Feb 7th, 2009 - 5:35 AM
Hi all! Here I am posting again about behavior challenges we continue to have with our son Nicholas (age 7, late onset INCL).
For those of you who have delt with major behavior outbreaks and uncontrollable aggressive behavior, what do you do in these situations??
This seems to be happening more and more to the point we are seeing it almost everyday. My other two children are scared and ready to move out of the house (I'm worried about my oldest (11) the most who has become very reserved and sad).
Has anyone ever called the parametics to come to the rescue?
I feel like I need to have him admitted to the hospital for observation to help with this?
His psych doctors haven't been very helpful and don't want to change up his meds.
I'm about to crack myself and would love any suggestions you have.
Thanks again for everyones great input in the past and look forward to hear what else we can try.
Jill Wellner
Waterloo, Iowa
Nori
Feb 7th, 2009 - 8:48 AM
Hi Jill, I feel so sorry that this is happening to your family. In my opion, it was the worst part of the whole disease process. One of my two sons with JNCL (both deceased) had such aggressive behavior that we had to place him in a group home for a while to protect the other children and for our sanity. I'm not suggesting you do that, but it is always an option. He would throw anyting he could get his hands on and throw them at someone. One time he was playing outside and threw a brick at our 3 year old, which resulted in stitches and a huge goose egg. He would attempt to get knives out of the drawer the whole time screaming that he was going to "get a knife and kill you". I could go on for hours about the things he did. Yes there were times when I was tempted to call 911, but there would have been nothing they could do. We tried everyting including many different medications and behavior modification programs. All the medication did was make him fall asleep very briefly many, many times all day long. Each time he would wake up screaming and kicking even worse than before the nap. He was still up all night and doing things like tipping over furniture and slugging his sleeping brother in the face because he could hear him breathing. He just got madder and madder at the behavior mod things we tried. The one thing that did help was to have a room with little to nothing in it that we could lock him in while he was having an outburst. I know that sounds harsh, but having no one to interact with during these outbursts makes them decelerate faster. We even had a small window put in the door so we could watch him the whole time without him knowing. I or my husband would stand by the door watching the whole time he was in there. The longest he was in there was 20 minutes, whereas when we tried to control him outside it would often go on for 3 hours or more. It got so that nearly as soon as he went in he stopped. Think how miserable he must be during these times let alone the rest of the family. All I can tell you is that it did pass, but it was bad for over 10 years. The funny thing was that even during his last few years when he could hardly do anything or speak he would still swear at us occasionally. His last word on this earth was "pregnant dog". We can laugh about it now, but it nearly cost us our minds and our family.
Good Luck, and don't stop looking for help!
Tina Heuchan
Feb 8th, 2009 - 6:05 AM
We are also have trouble with Nicholas 12 jncl Behavior
We just introduced zoloft and about 10 days later he had his first seizure. He still takes abilify. When he starts to go into meltdown our Psyc said to give him a dose on benadryl. if we can remember early enough..like at the start. Dont know what is in it but sometimes it works...other times it doesnt.. thats when everyone goes into time out ... I sent all to there rooms me included. This just keeps us from feeding into the anger by just repeating ourselves.. I dont know the "right" answer and I dont always know if we are doing the right things. but it works for now.. and it had helped as thingd dont get broken as much..Sometimes they just need time to process and cool down without me badgering him. Then he is like I sorry i love you and its like it never happened....I am left feeling like I just exited the twilight zone. because he is over it and we are like what just happened... but the thing I guess I get upset about is I get tired of picking up the mess over and over and over.
Nori--We have an appointment with behavior specialist. I am open to suggestions because our Psyc has none. I am not real confident but am hopeful that this behavior spec. is going to work. they just observe and give you a plan. But Nicholas's instruction manual was lost somewhere I think when he was around 5 years old and the guidelines for how we correct and work with Addie dont work with him.
so are you saying this behavior person isnt going to work??? ill give it a shot...
Glenda Flatt
Feb 7th, 2009 - 8:50 AM
We totally understand. We are going thru the same thing right now. We have a 3 yr old daughter, and she doesn't understand at all. She can't even speak or any of us as far as that goes...it just sets our Nicholas off. He has JNCL and is 15. Right now is a really bad time for us. We have changed his med to Lithium and we are doing Buspar and Xanax, these do help some and his tolerance is so strong that it doesn't make him "dopey".
We have just started the Lithium so I'm not sure if it will help.
I'm sorry that you are having a hard time, if ever you need to talk my # is 606-423-0006.
Take care!
Glenda
Somerset,KY
Jill
Feb 7th, 2009 - 12:20 PM
Wow, thank you! Nori, our situation sounds exactly like yours. It made me cry knowing that someone actually understands what we are going thru! We have tried a safe room for our other children because we don't have a safe enough environment for Nicholas to be alone in.
Glenda, I'm sorry you are dealing with this, too. It's so hard to watch our once happy child go thru this. Please keep me posted on how the new meds work.
I did just read that there is a study and clinical evaluation in Rochester, NY. Have either of you(or anyone else) taken your children there?
Thank you again for your responses.
Jill
Glenda Flatt
Feb 7th, 2009 - 12:42 PM
Jill,
We took Nicholas last Summer to Rochester and now we are getting ready to go see a Neurologist in Birmingham, AL on Thursday. My email address is glendaflatt@yahoo.com please email me and we'll talk.
Glenda
Joe Allio
Feb 8th, 2009 - 4:41 AM
Nori describes our 10 year old Annie JNCl very well! We startd her on Lithium about 8 months ago and have had very good results. Her Pshyc Dr. said Lithium should not work but she was willing to try anything. For months now Annie has been a happy blind 10 year old. Last year we had to pick her up at school 3 out of 5 days for violent behavioe. This year she has only come home 1 day since school started. I realize that all of our kids react differently to various meds, This one is working "for now" for us.
Jill
Feb 8th, 2009 - 1:32 PM
Joe, keep me posted on if the Lithium continues to work for you guys. I had suggested this to one of the docs, but he wasn't sold on the idea...
Nori
Feb 8th, 2009 - 2:00 PM
To Jill and Glenda in particular,
Keep in mind that Tyson would be 35 years old right now so all this behavior stuff was a long time ago. There have been leaps and bounds in the development of psycotropic medications since then and I believe it would be well worth trying. All we had to use was things like Thorazine and Valium etc. The last time we ever used Valium on Tyson he was awake for 36 hours straight screaming and fighting the whole time. I also think that the behavior modification programs have to be tried. Just know that it does not work the way they predict on a lot of Batten kids because their problem is a physical one (brain damage) rather than a mental illness. The one thing we can all count on with our kids is that no two are exactly alike. Just keep trying and remember to love them while you've got them even if they call you a **********
Joe Allio
Feb 14th, 2009 - 7:05 PM
Hello Jill, Lance has a few other family names also that have had success with Lithium which is how we became aware. Our Doctor was also of the opinion that Lithium was a long shot. If we can be of any help feel free to give our name to your doctor if he/she is interested in how this has helped us. God Bless...Joe
Joan Ditmar
Feb 10th, 2009 - 9:50 AM
Hi Jill, Our 13 year old son, Mitchell has JNCL with Behavior problems. While it is not to the level of Nicholas, we have our issues! Originally Mitchell was on Risperdol only, but now we have him on Risperdol and Lithium. I so can relate to the other postings, too, of the anger of threatening to kill someone, and then two minutes later, "I'm sorry, do you forgive me?" Breaks my heart. We have to tell him "apology accepted", or he starts crying. Constant verbal abuse; i.e., idiot, jerk, I hate you, I'll kill you... But I'll tell you, his seizures are controlled with meds at this point and I would much rather be on the receiving end of the verbal abuse, then watch him seize. That being said, his mobility is such that he isn't much of a threat, physically. He does stand about 5 ft 6 in though and weighs about 200 pounds so if he does connect, ouch. Would welcome any opportunity to talk and or email, too. joanditmar@hotmail.com. Take care.
Pat Pfaller
Feb 11th, 2009 - 2:11 PM My daughter Sara, 16, JNCL, also had these violent outbursts, but only at home. She seemed to know she had to be on her best behaviour at school! Anyways, when puberty struck, she really started acting out. I spoke with Lance, and he suggested that these were psychotic episodes, and she would improve with anti-psychotic medication. She has now been on Risperdal for 4 years, and it has helped so much! I tried taking her off of it for a couple of days, and boy, was I sorry! Sara is only on 2 meds; Risperdal and Ativan for seizures.
Sara has lost a lot of weight this year; she went from a women's size 16, and now is down to a 4/6 in jeans. I'm not sure what prompted it, since her original weight gain was from Depakote when she was 9.
Please talk to your doctors about anti-psychotics. It really will help, and very quickly. As hard as it is to perhaps "dope" them so they are docile, it does help with the rest of the family. You have to keep your whole family in mind; especially if you are worried about younger siblings. This is really hard on the whole family. My 18 year old son is now acting out because of the stress of this past year, with so many changes for Sara. She is now wheelchair-bound, can't see anything, and just wants to listen to Disney channel and sleep on the couch when she isn't at school.
Good luck!
Nancy Peterson
Feb 17th, 2009 - 2:53 PM
I send each and everyone of you a hug. I too have walked this road. My David would have been 30 this year. His years from 14 - 20 were pretty ugly at times. Risperdal and ativan were our saving grace. Later valium was substituted for ativan. There are drugs that work and you have to keep fighting. This is not a life for your Batten child, yourself or your family. It is awful and dangerous. One of our dear researchers, Dr. Rosemary Boustany, told me that you have to remember that quality of life is important, but our children are not really enjoying this any more than we do. When it is over, they have the sore bruises or worse that they feel, but don't understand. Safety is very important. My answers always came by way of Lance and his staff. A call from them (especially Nurse Nancy) carries a lot weight with the doctors treating our children. Words do not describe the current situation, it is a hell on earth. Just don't be afraid to be assertive with the medical providers and hopefully get solutions that minimize this stage. David passed through this time with a lot of help from medication. At around 20 he began to pass out of this stage. The last 4 years of his life we did not need anything but phenobarbital and a very low doze of valium to keep him comfortable. Someone said that our children have a completely different reaction to some medicines that other people. Over and over that is proven. And last, but in no way minor, you and the rest of your family need to still be standing and whole when this is over. If you have issues with your non-Batten children, they are just as important and need the same attention. I know it is hard, but very important. We are survivors and none of you are alone. Remember there is great support for your other children and you. Take care. Nancy
teresa
Apr 2nd, 2009 - 8:58 AMI thought I was the only one going through the battle. My son 12 was just diagnosed as NCL3 but for the past 3 years it has been a battle and I have had him transported to the emergency room to get him a shot of ativan to calm him down so many times the doctors there know us by name. He went totally blind at 8 and when he is in those moods that doesn't interfere with him connecting the blows. I have to lock me and my daughter in rooms where he could not get to us till help would arrive. Then have to clean up the mess after we got back. Its sad that others have to go through this to but glad to know it just isn't me.