klemeeri
07-06-2004, 09:32 PM
We are at the end of our ropes.... and are looking for input from anyone who has experience with BPD, Borderlines, eating disorders and emotional rage. In particular we are interested in med's and their effect on emotional rage. In short, she evolved to a combination of Tegretol, Seroquel and Lexapro which I thought worked well. We worked her off the Tegretol because she is deathly afraid of needles and was complaining of other symptoms. We are looking at Lamictal but have no experience with it. We have heard so many things and been through so much that it's getting to be confusing......... we're lost. Anyone have an opinion ?? Does Lamictal work like Tegretol even though they are completely different chemically ??
Details (excuse the lenght... it's hard to skip anything because it's all tied together):
Our 16 yr old daughter has had progressively worsening behavior problems over the last 4-6 years. The last 3 years have been terrible. She started seeing a Therapist about 4 years ago. After several months of getting no where, we took her to a Psychiatrist to see if meds would help her therapy be more productive. Home life was getting worse by the week...
Our daughter is 16 and has been diagnosed as having Complex Partials originating from the Limbic region. This was done per neuro testing, a BEAM EEG, etc. This is a topic of debate in the MD world....her symptoms are that she'll respond in a disproportionate way to regular events. Things are either black or white.... no gray. She'll go into an emotional and verbal rage for a short time (minutes) then feel terrible about it and the cycle continues. The frequency started slow and then ramped up to several times a week.... always having trouble with relationships at school, authority, etc.
In early 2002, her Psychiatrist put her on Depakote. She was petite, cheerleader and dancer and the Depakote made her gain 30+ pounds (went from 105 to 135-140 really quick). She had strained relationships already so with the weight gains came paybacks. Kids really picked her out and made fun of her... she became isolated and then started using food to cope. No combination of meds would give relief. Several months went by with no relief and a combination of meds being attempted.
In late 2002, she was hospitalized for the behavior because it was destroying the family (especially with respect to her younger sister). That's when they supposedly found the Complex Partials. She spent over 12 weeks there and they were able to find a combination of meds that really worked well (Tegretol, Effexor and Seroquel)..... I was about ready to pull her out at week 9 because there was no progress but then they hit the right dose of Tegretol.... it was like night and day. She was discharged 2 weeks later. Prior to the discharge, I had them repeat the BEAM... which came back with no appreciable difference.... (which is why I don't really know what the relevance of the BEAM is). She was still having the patterns but the behavior was much better on the meds. We took the gains we had and ran. The doctors who treated her said she had significant signs of an eating disorder and had already developed bulimic symptoms.... and that we would end up having to deal with that at some point.
Her behavior was good for 4 months or so and she was able to control the emotions better. The eating behavior got more and more bizzare... and got so bad that her health was at risk. She knew whe had a problem and was OK with getting help (she had gone from 140 to 95lbs). We ended up hospitalizing her in an eating disorder program... which was 10 weeks.
Since then she has complained about her meds and their effects (tired, memory, etc.) and she is deathly afraid of needles.. For some stupid logic, we elected to get her off some of the meds. The Tegretol was the first to go because it requires routine blood work. It was gradually reduced over 3 weeks after she got out of school. I am convinced that since it stopped, we have regressed to where we were in 2002. The behavior was back....just as bad as the worst days of 2002. As I type this I am debating calling the Sheriff to come take her to the hospital (today was a bad day for her). We are petrified.... and feel hopeless.
She has been in CBT for the last 3-4 years, my wife and I have been in therapy for the last 3 years to learn better parenting skills and how to support our daughter and her sister, her younger sister just started individual therapy to address how she must be feeling inside (Mom and Dad will send me away if I misbehave). All the therapist work out of the same office so they have the ability to speak together and do a good job of tag-teaming.
Her therapist says she has the traits of an emerging Borderline Personality disorder. Her new psychiatrist (and we've been through a few) says she is Bi-Polar. She is currently taking Lexapro and Seroquel. About 8 weeks ago she stopped her Tegretol (heavy dose)....soon after she stopped, her behavior issues came back.
QUESTION--> her Psychiatrist is recommending Lamictal as a replacement for Tegretol. Anyone have experience with this ?? They are in no way similar chemically and I'm concerned that the effect will not be the same. Given the situation here at home.... we need to do something right now otherwise we're going to have to remove her again.
The other concern is that Lamictal has to be "eased into" very slow to keep an eye on the side effects. I just don't see us having time on our side.
Details (excuse the lenght... it's hard to skip anything because it's all tied together):
Our 16 yr old daughter has had progressively worsening behavior problems over the last 4-6 years. The last 3 years have been terrible. She started seeing a Therapist about 4 years ago. After several months of getting no where, we took her to a Psychiatrist to see if meds would help her therapy be more productive. Home life was getting worse by the week...
Our daughter is 16 and has been diagnosed as having Complex Partials originating from the Limbic region. This was done per neuro testing, a BEAM EEG, etc. This is a topic of debate in the MD world....her symptoms are that she'll respond in a disproportionate way to regular events. Things are either black or white.... no gray. She'll go into an emotional and verbal rage for a short time (minutes) then feel terrible about it and the cycle continues. The frequency started slow and then ramped up to several times a week.... always having trouble with relationships at school, authority, etc.
In early 2002, her Psychiatrist put her on Depakote. She was petite, cheerleader and dancer and the Depakote made her gain 30+ pounds (went from 105 to 135-140 really quick). She had strained relationships already so with the weight gains came paybacks. Kids really picked her out and made fun of her... she became isolated and then started using food to cope. No combination of meds would give relief. Several months went by with no relief and a combination of meds being attempted.
In late 2002, she was hospitalized for the behavior because it was destroying the family (especially with respect to her younger sister). That's when they supposedly found the Complex Partials. She spent over 12 weeks there and they were able to find a combination of meds that really worked well (Tegretol, Effexor and Seroquel)..... I was about ready to pull her out at week 9 because there was no progress but then they hit the right dose of Tegretol.... it was like night and day. She was discharged 2 weeks later. Prior to the discharge, I had them repeat the BEAM... which came back with no appreciable difference.... (which is why I don't really know what the relevance of the BEAM is). She was still having the patterns but the behavior was much better on the meds. We took the gains we had and ran. The doctors who treated her said she had significant signs of an eating disorder and had already developed bulimic symptoms.... and that we would end up having to deal with that at some point.
Her behavior was good for 4 months or so and she was able to control the emotions better. The eating behavior got more and more bizzare... and got so bad that her health was at risk. She knew whe had a problem and was OK with getting help (she had gone from 140 to 95lbs). We ended up hospitalizing her in an eating disorder program... which was 10 weeks.
Since then she has complained about her meds and their effects (tired, memory, etc.) and she is deathly afraid of needles.. For some stupid logic, we elected to get her off some of the meds. The Tegretol was the first to go because it requires routine blood work. It was gradually reduced over 3 weeks after she got out of school. I am convinced that since it stopped, we have regressed to where we were in 2002. The behavior was back....just as bad as the worst days of 2002. As I type this I am debating calling the Sheriff to come take her to the hospital (today was a bad day for her). We are petrified.... and feel hopeless.
She has been in CBT for the last 3-4 years, my wife and I have been in therapy for the last 3 years to learn better parenting skills and how to support our daughter and her sister, her younger sister just started individual therapy to address how she must be feeling inside (Mom and Dad will send me away if I misbehave). All the therapist work out of the same office so they have the ability to speak together and do a good job of tag-teaming.
Her therapist says she has the traits of an emerging Borderline Personality disorder. Her new psychiatrist (and we've been through a few) says she is Bi-Polar. She is currently taking Lexapro and Seroquel. About 8 weeks ago she stopped her Tegretol (heavy dose)....soon after she stopped, her behavior issues came back.
QUESTION--> her Psychiatrist is recommending Lamictal as a replacement for Tegretol. Anyone have experience with this ?? They are in no way similar chemically and I'm concerned that the effect will not be the same. Given the situation here at home.... we need to do something right now otherwise we're going to have to remove her again.
The other concern is that Lamictal has to be "eased into" very slow to keep an eye on the side effects. I just don't see us having time on our side.
Sponsor
tkdmom96
07-07-2004, 01:36 AM
Hello and Welcome to the boards,
First let me express my overwhelming sadness for your family's struggles and let you know that I also understand your frustrations. We have a daughter who is also 16. She was diagnosed with Complex Partial seizures at the age of 9 months. We spent YEARS going on and off 7 different medications and combinations of those meds before finally looking for a specialist in Epilepsy, called an Epileptologist. We did this in May of 2003. From that point on, we knew we were in excellent hands. Sad point, this specialist was available to us for the last 3 years and in the same Neurology clinic as the Neurologist we had for 13 of her 16 years! He never referred us or bothered to tell us of an alternative! Their offices were literally 10' away from each other. Since then our daughter went through one year of testing, 2 surgeries and has been seizure free since June 7, 2004. She still takes meds, but we hope for the best outcome possible.
Seizures from the Limbic area are difficult to deal with. That is the emotional area of the brain. However, it sounds as though your daughter could possibly have a combination of issues. Have you contacted a specialist that deals only with Epilepsy to see if that is the main problem or a contributor?
Did the doctors ever discuss sedating or relaxing your daughter for blood tests? By taking a liquid relaxant? Maybe Verset? Especially since the Tegretol seemed to work so well for her?
Have you ever noticed if her more irrational times come in relation to her menstrual cycle? A new doctor may find that info important. It was for our daughter and I know it is for some women on the boards here as well.
Does her eating disorder have an affect on her levels of medication in her blood system? If she is vomiting after or around the time of having taken her meds, she may not be absorbing all of her medication properly.
I have worked with Bi-Polar students in our school district over the last 5 years or so. It is a difficult situation to deal with. Many sibs and parents end up in counseling because of the peaks and valleys that occur with this disorder. High for a few days or weeks, then a total crash into negativity, dispare and suicidal thoughts. It can be very difficult. But if the correct meds are found, things can be much improved. It's finding the balance. If this is the case, you have been doing what you need for awhile already. I give you a lot of credit for having known when to seek help. Many people are too embarrassed or can't admit that they need outside help, and everyone in the family suffers.
Our daughter has been on Lamictal since October 2003 for her Complex Partial seizures. Our Epi likes this drug for this type of seizures over some others. Katie has been on so many though, that our choices were running thin. She was on Tegretol for 12 years, before it stopped working. That was also about the same time she started her menstrual cycle. Hormones, a difficult beast to deal with. Not in behavior as much as the chemical imbalance it causes in the body and that affect on the medication control.
It took Katie nearly 7 or 8 weeks to get to a theraputic level of Lamictal. (which she now takes 200mg in the am and 200mg in the pm) They need to increase slowly (by 25-50mg per dose) and you need to watch for a rash that can cause serious complications. It is called Stevens-Johnson Syndrome and you can find info online. Please read about it.
What is a "BEAM" EEG? We have had a number of tests done, and have not ever heard of that one.
As I mentioned earlier, I would look into finding an Epileptologist that may be able to look at some of the issues your daughter is having and whether or not they are soley that of a seizure disorder or a combo of things.
You should be able to find the names of Epi's in an area where you live, or a state or two away. I do know of Epi's in the following areas: Texas, Wisconsin, Minnesota, Ohio, Maryland, California, Washington State. You need to find a "comprehensive Epilepsy clinic" or "program". Which you can look up online. Also, call and interview them. Decide if one "feels" better than another. Our Epi is at Children's Hospital of WI and she is well known amoungst her colleagues. Dr. Mary Zupanc, she is online as well. She also has a well known colleague at the Cleveland Clinic in Ohio. Her name escapes me now for some reason. But if you look up the Cleveland Clinic and Epileptologist, her name will be there. She has been there a number of years.
Good luck and keep us posted. Maybe someone else here will have some comments to add. A long intro is not out of line, as it gives us the info we need to try to answer your questions. The dedication to your daughter's well being is apparent, continue with that. Ask, research and never give up hope!
Again, welcome...and my best to your family.
Vicki
First let me express my overwhelming sadness for your family's struggles and let you know that I also understand your frustrations. We have a daughter who is also 16. She was diagnosed with Complex Partial seizures at the age of 9 months. We spent YEARS going on and off 7 different medications and combinations of those meds before finally looking for a specialist in Epilepsy, called an Epileptologist. We did this in May of 2003. From that point on, we knew we were in excellent hands. Sad point, this specialist was available to us for the last 3 years and in the same Neurology clinic as the Neurologist we had for 13 of her 16 years! He never referred us or bothered to tell us of an alternative! Their offices were literally 10' away from each other. Since then our daughter went through one year of testing, 2 surgeries and has been seizure free since June 7, 2004. She still takes meds, but we hope for the best outcome possible.
Seizures from the Limbic area are difficult to deal with. That is the emotional area of the brain. However, it sounds as though your daughter could possibly have a combination of issues. Have you contacted a specialist that deals only with Epilepsy to see if that is the main problem or a contributor?
Did the doctors ever discuss sedating or relaxing your daughter for blood tests? By taking a liquid relaxant? Maybe Verset? Especially since the Tegretol seemed to work so well for her?
Have you ever noticed if her more irrational times come in relation to her menstrual cycle? A new doctor may find that info important. It was for our daughter and I know it is for some women on the boards here as well.
Does her eating disorder have an affect on her levels of medication in her blood system? If she is vomiting after or around the time of having taken her meds, she may not be absorbing all of her medication properly.
I have worked with Bi-Polar students in our school district over the last 5 years or so. It is a difficult situation to deal with. Many sibs and parents end up in counseling because of the peaks and valleys that occur with this disorder. High for a few days or weeks, then a total crash into negativity, dispare and suicidal thoughts. It can be very difficult. But if the correct meds are found, things can be much improved. It's finding the balance. If this is the case, you have been doing what you need for awhile already. I give you a lot of credit for having known when to seek help. Many people are too embarrassed or can't admit that they need outside help, and everyone in the family suffers.
Our daughter has been on Lamictal since October 2003 for her Complex Partial seizures. Our Epi likes this drug for this type of seizures over some others. Katie has been on so many though, that our choices were running thin. She was on Tegretol for 12 years, before it stopped working. That was also about the same time she started her menstrual cycle. Hormones, a difficult beast to deal with. Not in behavior as much as the chemical imbalance it causes in the body and that affect on the medication control.
It took Katie nearly 7 or 8 weeks to get to a theraputic level of Lamictal. (which she now takes 200mg in the am and 200mg in the pm) They need to increase slowly (by 25-50mg per dose) and you need to watch for a rash that can cause serious complications. It is called Stevens-Johnson Syndrome and you can find info online. Please read about it.
What is a "BEAM" EEG? We have had a number of tests done, and have not ever heard of that one.
As I mentioned earlier, I would look into finding an Epileptologist that may be able to look at some of the issues your daughter is having and whether or not they are soley that of a seizure disorder or a combo of things.
You should be able to find the names of Epi's in an area where you live, or a state or two away. I do know of Epi's in the following areas: Texas, Wisconsin, Minnesota, Ohio, Maryland, California, Washington State. You need to find a "comprehensive Epilepsy clinic" or "program". Which you can look up online. Also, call and interview them. Decide if one "feels" better than another. Our Epi is at Children's Hospital of WI and she is well known amoungst her colleagues. Dr. Mary Zupanc, she is online as well. She also has a well known colleague at the Cleveland Clinic in Ohio. Her name escapes me now for some reason. But if you look up the Cleveland Clinic and Epileptologist, her name will be there. She has been there a number of years.
Good luck and keep us posted. Maybe someone else here will have some comments to add. A long intro is not out of line, as it gives us the info we need to try to answer your questions. The dedication to your daughter's well being is apparent, continue with that. Ask, research and never give up hope!
Again, welcome...and my best to your family.
Vicki