Drug rashes and mood stabilizers...

Discussion in 'General Parenting' started by gcvmom, Sep 5, 2008.

  1. gcvmom

    gcvmom Here we go again!

    My darling difficult child 4, aka husband, takes Lamictal for simple partial seizures (which also helps his undiagnosed mood disorder TREMENDOUSLY).

    A few weeks after starting Lamictal, he developed a rash on both sides of his upper torso -- not a big area, maybe the size of a plum. He saw his neurologist and they concluded it was not the dreaded Stevens-Johnson rash but a typical drug rash. It eventually went away.

    Well about a month ago, husband got some funny looking red spots on his forearm and elbow, and I think even one near his collarbone. It looked a lot like poison ivy, which he's had several times, but this didn't itch much. Then about a week later, the drug rash patches on his torso came back. Very mild on one side and very obvious on the other.

    He's going in to see the neuro next week about this rash as well as the fact that he's having breakthrough autonomic seizures. And here's MY concern:

    There's a good chance the neuro will switch him to another medication... possibly Trileptal. I'm all for improving his situation with the rash and the seizures. But the mood component is really NOT on the neuro's radar, and I don't think husband will even discuss this with him even though he KNOWS how I feel about it and how happy I've been about the changes it's made in him. I am very nervous about rocking the boat in this regard. I CANNOT GO BACKWARDS WITH THIS MAN!

    So what's everyone's opinion about the other MS medications that might be prescribed here for temporal lobe stuff? Is Trileptal something that addresses depressive symptoms like Lamictal?
  2. klmno

    klmno Active Member

    I don't know about seizures or the temporal lobe, but my son didn't have much success on lamictol (it might have been because he was leaning toward the manic side when it was started) and he was switched to lithium- now lithobid. It has worked wonders, but difficult child still needs add-ons to take care of other symptoms.
  3. flutterbee

    flutterbee Guest

    I don't know about the depressive symptoms and mood disorders other than Lamictal. But, I wouldn't wait until next week to have the rash checked. I was told if I get a rash to call my doctor right away or go to the ER if after hours.

    Others will come along about the mood stabilizers. I just wanted to express my concern. I do understand yours, though, with the mood stabilizer part. Crossing fingers that it's not the 'dreaded' rash and he can continue with the Lamictal.
  4. susiestar

    susiestar Roll With It

    Chances are that the neuro knows something about the moods and behavioral part of seizures. I know Jessie's neuro is well-versed on all of that. What would happen if you went with your husband to the appointment? Would the doctor address your concerns? Woudl husband find this acceptable?

    Jessie is on keppra. I don't have a clue how these medications work, other than to know lamictal did NOTHING for me other than cause migraines (was supposed to help depression and migraines). Wiz was on trileptal for a while at the end of his psychiatric hospital stay and right after he came home - I was underwhelmed by it.

    I think that it is probably important for you to talk with your husband AND his doctor about this. I hoep the doctor is understanding and htat things just keep getting better.

  5. gcvmom

    gcvmom Here we go again!

    Thanks Klmno.

    Heather, it's definitely NOT the Stevens-Johnson rash. The neuro has looked at it before. We know to go to the ER if it gets worse, but right now, it's in a very limited area.

    Susie, I usually go with husband and have expressed my concerns about the mood component several times to the neuro (who just looks at me and kind of grunts an acknowledgement -- maybe because he's primarily an epilepsy specialist and so that's all he tends to deal with). I just may have to see if my mom can watch the kids so I can go with him again. husband knows how I feel, but I don't know that he recognizes how different he is on this medication and he's very timid with doctors.
  6. susiestar

    susiestar Roll With It

    Would it be helpful to fax a list of problems/concerns to the doctor the day before? I am just trying to brainstorm things that might help.

    I would have problems with a doctor who just grunted at me over anything, so maybe i am not the best to offer suggestions. What would happen if you openly asked his opinion on which medication would continue to help with the behavioral issues while controlling the seizures and have a lower risk of rash or intolerance? I know the medications can be hard to tolerate. It took almost a year to get jess to a therapeutic level of keppra the first time.
  7. laurensmyprincess

    laurensmyprincess New Member

    My daughter has temporal lobe onset seizures too. She is on Lamictal and Tegretol.

    If he cannot tolerate lamictal, Depakote, Tegretol and Topamax are all anti seizure medications that work for partial seizures and are "mood stabilizers" (topamax the least so of the 3). Tegretol is one that has worked well for difficult child's seizures, though her behavior is a real challenge to us still.

    I hope you find something else that will be helpful.
  8. gcvmom

    gcvmom Here we go again!

    Thanks, Susie. Believe me, if this were MY doctor or difficult child's, I would have looked elsewhere a long time ago. But it's husband's and this guy is the head of the epilepsy program at our local teaching hospital. We did not choose his facility for husband's brain surgery because the surgeon he referred us to was very pushy -- we felt like we were talking to a car salesman. But he's okay for getting in to see and dealing with medications. Turns out, my mom said she can come over to watch the kids that afternoon, so it looks like I'll be tagging along :) I think the neuro felt a bit put-off by me when we first met because I had essentially figured out what type of seizure husband was having before we even got there. When I told him what I thought he looked almost shocked that a lay person could figure this out simply by searching the internet. Granted, I didn't know WHY he was having the seizures -- it took an MRI to tell us that! And I'm sure he realizes I have a huge influence on husband's medical decisions. He was really disappointed that we didn't use his surgeon. You'd have thought he was getting commission on the procedure!

    L'sMP -- thank you for sharing your experience with seizures and the medications used to treat them! I think the neuro had Trileptal in mind... at least that's what husband told me, but he could be mistaken. We'll find out more on Wednesday, and I will DEFINITELY be making the case for managing the moods as well as the seizures!
  9. susiestar

    susiestar Roll With It

    Why do the docs (esp specialists) want to think that we don't have a clue? I hate that. I also get bugged by the really pushy docs. If they can (and will) give a logical argument for their specialist or services, then I am fine, but otherwise it drives me batty. I hope the doctor is able to work with you.

    husband is lucky to have you to go with him. Many of us need someone to go to medical appts to advocate for things and to help us keep things clear. I take my mom, she is very helpful. husband is amazingly NOT helpful at doctors. He won't ask questions, and takes the doctor's word as the only opinion.

    Good luck at the doctor!
  10. laurensmyprincess

    laurensmyprincess New Member

    GCV - trileptal is the newer "cousin" of tegretol; so its pharma mechanics are simliar. Apparently, trileptal is supposed to have fewer side effects, but I haven't read that much about it as being a mood stabilizer. Perhaps it is, I just haven't seen much about it personally.

    What kind of brain surgery did your husband have? difficult child had a temporal lobectomy last year to try and stop her seizures.
  11. gcvmom

    gcvmom Here we go again!

    L'sMP -- he had a small (grape-sized) cavernous hemangioma removed from his right temporal lobe. It's essentially a cluster of leaky blood vessels that form a "cavern" of scar tissue after they leak. He had an MRI in '04 because he passed out while driving (apparently it was a seizure -- he'd been having these weird dizzy spells for a couple of years). No one caught the cavernoma at that time. It was there, but whomever reviewed his films missed it. We saw the new neuro in '07 because his "spells" kept happening and were increasing in frequency and severity. The neuro noticed the abnormality in his old films and ordered a new study, which revealed that the cavernoma had more than tripled in size. They recommended removing it because he was symptomatic and because it had changed so dramatically in size in a relatively short period of time. It had the potential of causing more significant damage if it was allowed to remain and possible grow larger.

    His surgery was this past February, and it went off just fine (except for a problem with pain management after discharge which landed him back in the hospital). The only problem is that the surgeon found ANOTHER one of these things, but very small (rice-sized), in his pre-op and post-op films. He's been having breakthrough seizures since surgery, but I keep telling him he never got to the full dosage level of Lamictal that the neuro initially rx'd for him (because of side effects like insomnia and sweating).

    He STILL hasn't gone in for his post-op EEG and MRI -- which was supposed to happen in... ummm... APRIL!!! But he did finally contact the surgeon's office this week and they're working on his appointments :)

    Did your daughter's surgery resolve the seizures? How is she doing on Keppra? We were told there was no guarantee his seizures would stop since the surgery itself causes scar tissue and irritation. We just figured he'd control it with medications. And his seizures are more an annoyance than anything incapacitating. We were more worried about damage that would result in permanent memory loss if left untreated.
  12. susiestar

    susiestar Roll With It

    Jessie is the one on Keppra. I think it does a pretty good job of controlling her seizures. I have to be paying close attention to see her seizures - she has no idea they are happening. We are working to increase her dosage now because she just had a growth spurt and was having more seizures. Our neuro has us increase her dosage 50 mgs a MONTH - She ws on 200 mg twice a day, then went to 250 mgs pm and 200 am, just increased it on the first to 250 mgs am and pm, and will work up to 300 mgs am and pm. Then we will do a long EEG - the 4 hour one caught some abnormalities, but that was over the summer. He wants a 23hour one after she has been at the new dose for a month.

    The first week of each increase she feels like she has a cold. I thought it was just a cold, but it has happened with every Keppra increas since she started on it.

    Tegretol was not good for her - she had a LOT of side effects - was barfing every time she took it, increased migraines, all sorts of problems. SO I hope the keppra works for a long time.

    I don't know what keppra does for moods. Other than 13yo PITA issues she is not moody much.
  13. crazymama30

    crazymama30 Active Member

    Trileptal can be used as a mood stablilizer, but I do not know if it acts like Lamcital. My husband tried Trileptal before Lamictal, and had a very bad reaction to it. He is very sensitive to these types of medications though. The Trileptal may help you husband. What kind of symptoms did your husband have before Lamictal?

    You could ask the neuro if they could keep the Lamictal and add a small dose of another anti seizure medication. I have heard of BiPolar (BP)'ers being on more than one, but I am not familiar with the treatment of seizures.
  14. gcvmom

    gcvmom Here we go again!

    Susie, sorry for the mental mixup! I've read about the cold/flu-like side effects of some of these medications. I'm glad the Keppra is working for her -- it's a fairly new drug isn't it?

    Crazymomma -- husband's mood symptoms before Lamictal were definitely depressive. He was constantly irritable, sometimes explosive. Our psychiatrist he saw for ADHD a loooong time ago commented that whenever he saw husband he looked like he was always in fight mode. He was confrontational, oppositional. He had a very low frustration tolerance and was extremely impatient. He slept a lot and went through long periods where he just did not do much of anything around the house. He would just come home from work and go upstairs to watch TV. We hardly saw him in the evenings. He also had very definite obsessional qualities. He would get stuck on some of these obsessions. He had lousy, lousy impulse control, and when he got mad, he would stay mad for a long time. He would sometimes get this feral look in his eyes like a switch was turned on in his head. I distinctly remember a time in Vegas when he got mad at me over something that started out trivial and it was just a rapid spiral downwards after that. He just kept pulling money out of his wallet and feeding to the slot machine until his wallet was empty. He could not stop himself.

    Anyway, you can understand why I do NOT want to go back to the way things were before. His stability has made a huge difference in our marriage and our family, even if he doesn't fully recognize it!
    Last edited: Sep 6, 2008
  15. OpenWindow

    OpenWindow Active Member

    I hope you get the medication thing straightened out - I so understand you not wanting to go back to that. It is odd to me how they don't notice the medication helping with their moods. My husband took an AD at one point and it actually helped him. He didn't think so, though, so he quit and now refuses to try again.