Lithium or Tegretol experiences?

Discussion in 'General Parenting' started by tammyjh, Jan 5, 2008.

  1. tammyjh

    tammyjh New Member

    difficult child is currently on prozac that was prescribed while she was inpatient back in the late summer. It was hard to tell if this was beneficial for her because she wasn't home. She came home in mid. Oct. and husband and I have come to the conclusion that its probably not beneficial and maybe whats making her moods a little more bizarre and intense. At the last appointment., psychiatrist talked about taking her off it to which I agreed. We didn't get to the plan for weaning because psychiatrist became a little irritated with me when I shot down every medication she suggested because we'd tried them all, played with the dosages more than a few times, an revisited some of them. We've only been to this particular psychiatrist twice as its hard to find a psychiatrist here, especially in the child psychiatry field. When we have found someone, it seems they don't stay with the practice long and then we're looking for someone else. So, new psychiatrist is looking at me like I'm the most difficult person in the world to deal with and says "maybe medications aren't the way to go. What she needs is in home supports." I say that I agree that maybe we won't find a medication for difficult child but we're still willing to give it another go and that we don't qualify for the level of in home supports that difficult child needs because her iq scores on her neuropsychologist were too high. So, she tells me that she's out of time and to research Tegretol and Lithium and we'll make a decision at the next appointment. :rolleyes: Odd thing was that earlier in the appointment., she was starting write us a script for Risperdal without asking me to research it. I'm used to working with docs giving an attitude so I just blew it off for the most part and said we'd see her next session with a decision. I've read a bit on each but was wondering what kind of experiences others have had with either of the medications.
    TIA :smile:
  2. Sara PA

    Sara PA New Member

    I have to admit I usually have an opinion on anything and everything -- if I don't, give me a minute and I'll come up with one. I know a lot about medications and a lot about partial seizure disorders. However, I hesitate to say anything because I don't know squat about the surgery your daughter had. My gut reaction is that there is a connection between her behavior/moods and the surgery or that the surgery slightly effected the remaining part of her brain -- that she is experiencing some emotional partial seizure activity located in the temporal lobe. That would lead me to want to stick to anticonvulsants and only anticonvulsants until they had a good long run. I would steer clear of lithium which can lower the seizure threshold.

    But that's my gut reaction based on very little knowledge and information about your daughter. I could be totally wrong.

    What drugs have you tried since her surgery?
  3. klmno

    klmno Active Member

    I don't know anything about Tegretol but difficult child has been on lithium twice. Of course, medications can work VERY differently on different people and we found lithium worked differently on him both times. The first time didn't last very long because he wasn't even stable enough to keep a regular schedule and I was concerned about the levels in his blood when he wasn't sleeping regular or eating regular and this was not a time release lithium. Plus, I wasn't seeing any change. psychiatrist took him off then for those reasons and we tried something else. Later in the year (last summer) after difficult child was back to a "normal" schedule of sleeping and eating he was put back on lithium. Raging completely went away the first couple of mos. He was switched to Lithobid (time release version) to try to help with side effects. I'm not sure if any other improvement was a result of lithium or not- depakote was added and has helped quite a bit with "hyper" moods. Now, psychiatrist said we'll try SLOWLY lowering lithium to see if depakote alone will do the trick. Apparent side effects to lithium difficult child has had: stomach problems for days after increase in dosage ( one dosage level left him sick the whole time until it was lowered), bad acne- even gets in his scalp, weight gain (not sure if this is lithium related). Also noteworthy, signs of raging are re-appearing, althouugh difficult child is "stopping" himself before it really becomes a rage- not sure if lithium (or depakote) is giving him a little more self-control or if it means that lithium just doesn't work long term for him. Of course, there are blood draws and LOTS of water drinking. These both taper off a little after a while.

    Hope this helps!
  4. klmno

    klmno Active Member

    Sorry- I overlooked the surgery aspect- is there a neuroligist working with psychiatrist? I think I'd want one on board!
  5. tammyjh

    tammyjh New Member

    Thanks for responding :smile:

    As far as daughter's surgery, she had her two hemispheres disconnected and the right temporal lobe removed as well as large chunks of her right frontal and right parietal. The rest of whats left of the right hemisphere is abnormal on the eeg but dr.'s argue of the funtionality of it. One assumption was to try to treat the activity and see if by treating that, maybe the mood would stablize a bit. Problem was, once she was on medications., no one wanted to order another eeg...just said that we'd notice the mood change if the medications were helpful. We have a case manager who's trying to track down a good specialist. What we've tried for medications are:

    Zoloft--bad reaction

    Risperdal--worked ok for about a month then it was like she had never been on it. Went back to this one a couple times since with no results.



    Adderal--kind of like the risperdal. She overfocused on certain things for a couple weeks and then nothing.



    Depakote--sick to her stomach


    Most of these, we played with dosages and revisited but didn't really see any results. She's on the Prozac now but I'm not a fan of SSRI's for her. She really tripped offline with the Zoloft so its made me very wary of that particular class. I also know that for her, its maybe a little trickier where she's missing part of her brain. I've been leaning more toward the tegretol because its an anticonvulsant but husband seems to favor the Lithium because her moods are cyclical in nature and some of ther therapist have mentioned that while she probably doesn't have Bipolar, because of her brain injury, she could have symptoms that are similar.
  6. Peaceful

    Peaceful New Member

    Tammy, hi. I work in the OR and have done neurosurgery. As far as the impact of removing her right hemisphere and behaviors/symptoms, without knowing how much they took and exactly what was preserved, most of the right brain controls reasoning finctions and functions of language (ie intonation of the voice) and the tranduction of visual and musical stimuli such as facial perceptions (understanding expressions on people's faces).However, for emotion, it's usually bilaterally controlled (both sides of the brain). Not sure what you're trying to address with the medications. Do you want to post that?

    difficult child was on tegretol. It made her gain a LOT of weight. It started working and then stopped quickly.

    She was on Lithium when she was 8 or 9 but couldn't handle the blooddraws so we stopped. She started back on Lithium three months ago and is doing very well. Lithium also has some healing properties for the brain. If you look up research by Dr. Manji you'll find some info on that.

    difficult child also takes the Ridperdal M tab. It's a fast acting rescue medication and it works great. She's also been on most everything and this is the only rescue medication that worked. You might want to consider that as well.

  7. tammyjh

    tammyjh New Member

    We're working on getting a new neuro. There's only two child neuro's in our state and the one we see always seems to be too busy and not interested. We had a consult with a neuro while she was an inpatient last year and we really really liked her so we're trying to see if its possible for us to get back with her. She usually only sees adults but made an exception for us as daughter was an inpatient at the time.
  8. Sara PA

    Sara PA New Member

    How much do you know about what psychiatric issues might show up after the type of surgery she had. Based on what Peaceful says, it seems like emotional issues might be part of the trade off. I wonder if the answer is not medication but therapy designed to rewire the brain, to get the remaining part of the brain to do what the missing part was suppose to do.

    (I'm in over my head here; just tossing out ideas.)
  9. tammyjh

    tammyjh New Member

    difficult child seems to cycle with her mood instability. She'll be quite hyper/giddy... for who knows how long....could be hours, days, a week or two and then she'll crash and be extremely agitated and angry and anything can provoke a huge temper tantrum. It could be because someone said "good morning" to her and she just wasn't ready to hear it. Its like she gets in these moods that the irritability thats always just under the surface(even when she's hyper), just bubbles over and consumes her. That phase can also last for minutes, hours, days but when it passes, it passes quickly. Definite mood regulation problems that we know has to have its basis in the brain injury but we would really like to find something to give her even the tiniest bit of stability so that we can help her access her coping skills when she needs them. In short, she has plenty of coping skills, just can't get to them when they're needed.

    She is definitely a left brained individual...very concrete, language based, impaired empathy, a lot of social deficits, her reasonin skills are poor, etc... Her nonverbal communication skills aren't good but she has made gains over the years in that area so we know that some rewiring has gone on. We're still hoping for more but working with her proves to be difficult because of the moood.
  10. tammyjh

    tammyjh New Member

    Toss as many ideas as you want....we invite all kinds of ideas :smile:

    Yes, we know that on some levels, this may be as good as it gets for her. From what little I've found on researching her particular type of surgery (hemispherectomy), I've not found much that deals with psychiatric issues after surgery. I'll have to run some more searches. Her old neuro told us that with her medical background, its not surprising that we see behavior issues and thats as far as he would go with it. So, we're looking elsewhere right now.

    We've been to neuro rehab but with her mood being so unstable, its difficult for anyone to work with her other than Occupational Therapist (OT) and PT. And there's also the added physcial aggression and if she's "in the mood", I don't want to be in the van alone with her because she's so unpredicatable.

    What we and our case manager would love to do is get her into a residential program that works with kids with her deficits and helps train her. Currently there is nothing in our state for brain injury but the closest match would be a home with kids with asperger's. The state will not approve it at this time because we're still in the middle of utilizing the in home supports---pointless program at this point as they were only approved for a few hours a week.
  11. Sara PA

    Sara PA New Member

    Was that cycling occurring before the surgery?

    All those medications you tried -- which anticonvulsants did you use with no other medications on board?
  12. Peaceful

    Peaceful New Member

    Tammy, thanks for the additional info. The function of the temporal lobe is primarily auditory processing, memory and speech and vision. Due to it being removed on the right side (I'm assuming the left is still intact and functional) you may want to use accomodations and interventions commmonly used for someone with Central Auditory Processing Disorder (CAPD) (Central Auditory Processing Disorder). I don't know that there'd be a need to test her for it since it's almost a given she has it I would think. If you wanted her tested it's a simple, quick hearing test done by an audiologist and it's a definitive answer of yes or no when complete. (You may already know this stuff so sorry if I'm insulting your intelligence - I don't mean to. :smile: ) There are support sites for Central Auditory Processing Disorder (CAPD) if you google it.

    If she has a deficit in her right side and functioning in her left, she's probably an verbal learner at this point (may have always been) done in a noninflective way. You may want to see about using accomodations that include best practices for someone with this way of learning.

    The hippocampi does control memory and behavior to some extent. This may be where the episodes you're describing are coming from. Has she mentioned anything about foods not tasting right? Is it possible she's becoming irritable because she's having issues finding the right words for her emotions or the situation? One way you might be able to tell if she can't articulate it is - when she's having an episode, is her speech flat and monotoned or does she have inflectual distortions (ie does she raise and lower her voice excessively)? I'm imagining that the loss of the right side of the brain in the areas you mentioned would cause her issues in emotional speech.

    For this reason, when you speak to her with-a neutral statement in an emotional manner("Good morning" very pleasantly/happily) her perception is disrupted and she can't descriminate the tone. She may have issues differentiating in the emotional quality of something that's said - ie love vs hate or humor even. I'm imagining she can't comprehend complex, non-emotional written or spoken language per studies I've read. Does she have issues discerning attitude, context, feeling and intent when you speak to her? If she doesn't, you're exceptionally lucky.

    I don't know if any of this helped or rings true. Given this, if you can relate to any of it, my suggestion based on my experience (limited truly) you may want to give the Risperdal M-tab a try. Teh good news is if it works for her symptoms, you'll know immediately with a couple of doses. If it doesn't, you can discontinue it and it'll be out of her system immediately without lasting effects.

    But I'm an amateur!

  13. tammyjh

    tammyjh New Member


    We don't know if there would have been a mood component before surgery because she was so young. She's actually had two surgeries. One when she was 6 months old to remove a small lesion and then the big surgery when she was just over a year.

    Before surgery, we used Phenobarbital, Dilantin, Felbatol, and Depakote. We didn't use them all together but we used the Phenobarbital with each of them. After surgery, we didn't use any of the anticonvulsants on their own. She was on Abilify with them and the Depakote and Keppra were within the last year.
  14. tammyjh

    tammyjh New Member


    I'm not sure on the Risperdal M-tab. Is there a difference between that and just plain Risperdal? Is it a timed release?

    I haven't really spent much time learning about Central Auditory Processing Disorder (CAPD) because we've mainly researched NLD, Asperger's, and brain injury. I'll have to go do some looking now.

    She is very lucky in that she does recognize differences in tone of voice and is able to use some inflections of her own. She's actually been working quite some time on trying to use sarcasm. She hasn't gotten the tone of voice down yet, nor does she truly understand it but the fact that she's trying and that she does know my tone when I'm mad, sad, or happy shows that she has had and has some rewiring going on :bravo: Its a limited area for her but its us hope that it will help the mood if she can keep progressing in that area.

    Yes, she's a very verbal learner and extremely articulate...a lover of words. It works against her in some ways people the false impression that she is much more functional than she really is and they assume she can do more than she is capable of. I think husband and I even expect more of her than she is able to give at times because of her verbal output. If her verbal skills were not so strong, she would have an MR diagnosis. As it is, she has fallen from a low average to a low borderline on her neuropsychologist exams.
  15. tammyjh

    tammyjh New Member

    Oh, and I just wanted to say "thanks" again. You guys have given me some good stuff. I'll have more to research and think about this week :smile:
  16. Peaceful

    Peaceful New Member

    Tammy, it's good to hear she's making so much progress! Seizures on the right side are so much better than seizures on the left side. Weird as that sounds.

    The M tab is still risperdal - just a fast acting form that's more quickly and completely absorbed when it's taken. It works much faster than the regular tablet as well.

    I hope you're able to figure something out that works for you.

  17. bzymomto4

    bzymomto4 New Member

    my adult experiences with these medications. Lithium works well, but not completly - works better for me when coupled with depakote. In the beginning there were some side effects that weren't more serious than irritating, but over time I can take the medication at night and not feel any side effects at all ( except hypothyroidism) I haven't taken tegretol, but I did take trileptal which is an updated version. To be honest I absolutely hated it. I developed such severe short term memory loss that I had to go on disabiliy form work. While home my husband would have to leave my a complete daily schedule including when to cook, when to get the kids off the bus, and when to take them to a lesson. I know this is more unusual but it was extrordinarliy miserable for me.
  18. Janna

    Janna New Member

    Hi Tammy,

    I don't know anything about the seizure stuff...but I do know a bit about Lithium, I can help you a bit.

    Lithium will require frequent blood draws to check theraputic levels, which should be in the .8-1.2 range. They will be needed more frequently in the beginning, but can be cut to every 3 -6 months, depending on the doctor.

    My son spent 16 months on Lithium. His enuresis (peeing the bed) increased heavily during the time he was on this, to the point he was soaking the bed nightly. He gained 42 pounds. He also was lucky enough (sarcasm there) to get Lithium induced hypothyroidism, which can be another side effect, which in turn caused the need for ANOTHER medication, Synthroid, for the thyroid.

    I will say, it shut down his raging for a long time. Even now that he's off (he's been off it about 3 months), his raging has pretty well subsided. I think the Lithium was a big help, but in turn caused alot of problems with side effects.

    Your child will also need to increase water intake, as dehydration is another side effect.

    As would Lithium toxicity be.

    Good luck.
  19. tammyjh

    tammyjh New Member

    The bedwetting alone is enough to make me think Lithium wouldn't be for her. She's incontinent during the day(every day) and once in a while at night. She has muscle control issues that seem to get worse over time. When she laughs over anything, she loses bladder control. We're readdressing this problem with her reg. dr. next week.