Going to husband's neuro appointment today... wish us luck!

Discussion in 'The Watercooler' started by gcvmom, Sep 10, 2008.

  1. gcvmom

    gcvmom Here we go again!

    My mom is able to watch the kids for us today so I can go with husband to his neuro appointment to discuss this remitting/relapsing rash that we suspect is from Lamictal as well as his breakthrough seizures.

    I asked husband this morning if he's noticed any difference in how he feels since going on Lamictal. He said he didn't know! :confused: I told him what I've observed, especially about being more patient and no so angry all the time -- he thought that was because of the Paxil. It could be in part, but I've seen the biggest changes since adding the Lamictal. He is so clueless and so self-UNaware it's really pathetic, poor guy.

    Anyway, I will be VERY vocal about the mood changes if there is any talk of switching him to another medication.

    I'll let you know how it goes!
  2. Star*

    Star* call 911........call 911

    :YOU GO WARRIOR WIFE..........

  3. OpenWindow

    OpenWindow Active Member

    Wishing you all the luck in the world!


  4. flutterbee

    flutterbee Guest

    I wish I had seen this earlier.

    When Wynter's former therapist's kid patients would say that couldn't tell the medications were working, she always asked them, "Are your parents yelling at you less?"

    He may not be able to see the difference in himself, but he may notice the difference in how people react/respond to him.

    I hope it went well.
  5. gcvmom

    gcvmom Here we go again!

    Well, it didn't go the way I thought it would. And I am SOOOO glad we didn't go through this hospital for his surgery because they act like a friggin' chop shop!

    husband is switching to Trileptal. Rationale: Neuro feels he has, at the very least, a sensitivity to Lamictal which could explain the intermittent rash -- it comes out every now and then when he's also exposed to perhaps another trigger. Who knows. Neuro also feels that the insomnia husband had on it would only get worse if he increases the dosage to address the breakthrough seizures. I'm not sure I agree with that, but he's the doctor.

    Neuro said as far as the mood issues go, he's not a psychiatrist and doesn't want to get into trying to treat two problems with one medication. So I declared to husband that if he starts to get grouchy again, I was going to book him with the psychiatrist to address that whole can of worms. No comment from husband, just a smile and a nod.

    So I'm going to go ahead and fill it through mail order (which buys me two more weeks of stability :D) . Then after he's been on it two weeks, if no seizures he's to gradually discontinue the Lamictal.

    Meanwhile, we get a call from the surgeon's office that they've finally, FINALLY scheduled his followup MRI and EEG -- for FRIDAY in Los Angeles (a 50-mile drive for us that takes one hour with no traffic and two hours+ with, and we'd be coming home in rush-hour traffic). So now I have to scramble and make arrangements for someone to pick the kids up from school. That was also the night his parents were going to come for dinner, so maybe we can get the to help out (since thankfully difficult child 2 is somewhat stable, I don't think I'll have to worry about mother in law slapping him again).

    Oh, and there's more! This idiot neuro starts to tell husband what the worst case scenario is if he doesn't respond to Trileptal... blah, blah, blah (husband is not the type of person you want to burden with stuff like this because he will just freak out internally) "If you fail two more seizure medications and are still having seizures, we'll probably just need to go in there and take out the whole hippocampus on the right side." What the blankety-blank-blank???!!!

    Okay, here's the problem I have with this guy. He treats epilepsy patients. The cause of epilepsy is really not always understood. So when they figure out which part of the brain is having the seizures, and it can't be controlled with medications, the take it out.

    In husband's case, we have a KNOWN structural ABNORMALITY that is causing his seizures. And we know that when they removed the last one, they found another tiny one not far from it. But they didn't want to mess with it because it was really small and in a more sensitive part of his temporal lobe. They weren't interested in just hacking out a huge chunk of brain. They went in to specifically remove only the offending part -- the size of a grape. So I have a problem when this other guy starts talking about removing a larger area of brain tissue just because that's the way they do things in his shop. Sheesh. It's akin to amputating for a mole, in my opinion.

    Soooo... husband is a little freaked about what the guy said. I reminded him that his surgeon has a different view. He can try the medication change, and I'll be ready to call the psychiatrist at the first sign of a mood swing!

    Sigh. I hope this isn't the beginning of the end, because things have been so calm and peaceful around here lately, I was actually starting to enjoy life.
  6. susiestar

    susiestar Roll With It

    gcvmom, you can tell your husband that Jess is on her 3rd or 4th antiseizure medication. NO ONE has even brought up the topic of brain surgery. AT ALL.

    Her neuro does brain surgery. Quite a lot of it. He is the top child neuro in our state, and more qualified than many in surrounding states. And we are NOT known for having the cream of the crop docs in this state. So after either her 3rd or 4th medication (I forget which we are on), to have surgery not brought up would make me think it is far from the normal protocol for epilepsy.

    There are a lot of antiseizure medications. FAR more than 2 and chop out the brain. That statement makes me wonder if the neuro let some medication student hack out bits of HIS brain. It just is ridiculous.

    Now there are diff types of seizures, of epilepsy, of causes of epilepsy. Each has a diff treatment protocol.

    I don't know about every kind of seizure. I have researched the medications because Jess and because my migraines. Antiseizure medications are also used for the fibro, quite frequently.

    I think the statement about removing the hippocampus was just silly. It certainly isn't applicable to the kind of epilepsy your husband has. They would try to remove the tumors, rather than to remove healthy tissue. Or so common sense would have you think.
  7. gcvmom

    gcvmom Here we go again!

    Susie I think you're absolutely right. This teaching hospital had a similar approach to my dad's bladder cancer. They told him to just have his bladder removed! They said he didn't need it anyway!!! He opted NOT to take their advice and went to a different hospital for help, still has his bladder 10 years later and is still alive.

    I'm so glad we didn't just dumbly nod our heads and follow his lead on this.
  8. mom_in_training

    mom_in_training New Member

    Yikes!!!!! Gvc my son is on the Trileptal and as far as seeing any changes in his attitude be it anger or anything else I saw none and it did in fact help to control his seizures. It was the Keppra that changed him for the first year he started taking it. My son in general is happy go lucky but the Keppra made him very angry. Thank god that deminished with time. I see that you have a hook up in LA but if you are game for another opinion please send me a PM and I can give you the name of my sons Neurosurgeon. He is local for you and is very reputable and does adult care. Geeze, I am sorry that your husband is having to go through all of this.
  9. gcvmom

    gcvmom Here we go again!

    Thanks, MIT. I'll PM you now :)