Thursday, June 23, 2011

Taking a Break from Lamictal

Well that didn’t last long. We were 6 days in on the new medication, Lamictal, when my son complained that he temporarily couldn’t feel his arms and legs anymore. This lasted for about a minute. Then last night, he woke up from a nightmare and had that same frightening feeling of not feeling his limbs.

Like most of our experiences, the doctor said that this was not typical with Lamictal. He explained that some people may feel tingling in the extremities, but to be sure, we should take a break from the Lamictal and try again in a week.

I tried to use this opportunity to ask questions about his medications and how we know the difference between what are symptoms from the disorder and what are side effects from the medication when it comes to things like depression and seeing monsters. He gave very generic answers that went something like this, “We just don’t know”. He then suggested taking him off everything to see what symptoms remain.

I could feel my skin warming up with frustration and dread as he went on to tell me that you never know, it could be helpful, but there’s always the risk that it could send him into the hospital. As he finished, he added that summer time is a good time to try this since he doesn’t have the stress of school.

When I asked more specific questions about my son, his response was that he didn’t know my son well enough to give me an answer.

Can you hear me screaming inside???

So I asked him about all the charts and logs I created recording my son’s experience over the years and if he could review this to get an understanding of his case, he cut me off and said that he would just talk to him to get to know him.

Yes, I’m really feeling angry at this point.

Then I asked him, “What can we do to make this happen, do we make lots of appointments with you?”

He casually said, “Yeah, I guess we can do that. I’m gone for a while, so I can see you in a month.”

This is our HMO at work. Brilliant.

Well you’d think the excitement would end there, but no. Tonight I just finished holding my son as he suffered a frightening panic attack.

Upon being startled by his brother, he went from having an overwhelming desire to scare his brothers, fighting an expression of elation mixed with suffering as he cried, “I look like I’m having fun from the outside, but I’m not on the inside, help me!”

Then he flipped out, going into full flight mode and frantically trying to get away as he rolled into a ball for protection. He screamed out, “kill me!” as he cried about all the bad thoughts in his head. Then purposely slammed his head on the ground many times and punched his forehead with his fist. Then with great anxiety, he tried to cover his eyes from all the “dark shadowed men trying to get him in his brain.”

As he started to calm down, he had the genius idea to ask for a video game to play so he could focus his brain on something other than all the bad thoughts. This really did the trick and helped him calm down and thanks to the recent melatonin dose, he fell asleep quickly after.

So here I am again, feeling frustrated and knowing in my gut that there must be better care out there.

14 comments:

  1. I feel so much sorrow for your son's state of mind.It must be so painful and frustrating to experience. But do not be too freaked out by his physical aggression on himself. I recommend getting a punching bag (seriously I do) so he can go crazy on it when he is suffering or getting your old phone books out and letting him tear it to shreds.

    I used to have so much rage in me before Anti psychotics where I would cry and slap myself and cut. But with the right med I am so much more at ease. As for your doctor.....he sounds pathetic to me and very unprofessional. I recommend approaching him in a different way as he seems to be blocking your current approach.

    Example: Instead of being knowledgeable about your sons symptoms play stupid and ask the doctor how he would like to approach your sons treatment plan. Ask what he wants from you that could get better results on your visits to him. Also help you son have a better and more involved visit by preparing him for the doctor. Ask him questions the doctor may ask and coax your sons answers into their most effective form. Basically you act like an attorney preparing questions for court.

    I wish you all the best and remember that doctors like to feel that they have the driver's seat in the treatment plan.

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  2. So sorry to hear about that all happening last night- when we started my daughter on Lamictal- it seemed as if it was making her dizzy and wobbly so we backed down and then very, very slowly moved her up to a therapeutic dose. She also reacted with so many side effects to all the meds we tried- at one point her doctor told me that she was the most reactive (side effects) pt that he had ever had- nice distinction, huh?
    I totally agree with "in the Pink"- it is challenging with the docs- I started out asking all kinds of questions and I could see his eyes glaze over and then I switched to being so appreciative- I say thank you- thank you every time we see him. But, he is very responsive- always calls back so I hope you eventually get a doc that does respect you, your son and the situation.

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  3. What that doctor is doing is basically malpractice. That said, if he is with Kaiser he could give a rat's @ss because their pockets are deeper than yours could ever hope to be so they know you will never will a lawsuit with them (we have a family member that used to work on lawsuits for them and saw it many, many times). He also knows you'll have to take your son to the hospital if it gets really bad and so he knows that safety net is there for him as he will no longer be the main doctor at that point.

    I know for us, even though we have BC/BS of Calif. we pay cash out of pocket for our pdoc and don't even file it with the insurance. Our pdoc has 30+ years of experience, he is readily available by phone (the dr. himself calls back within a day, always), he adjusts meds immediately, let's us adjust them a bit as we need (we've seen him for years now), and listens to my son and me closely. You need to find someone like this. It will be worth every penny and some and save your son many trips to the hospital. In fact, if I had listened to our pdoc we never would have had that trip to the hospital last year but I was sacred of Seroquel so I would not up the dose myself and instead paid the hospital 20k to do it for us.

    Mama, keep with this. Your son will get to stability and will be ok. But the key is finding the right the doctor. That is the first huge step and it's not easy.

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  4. I'm sorry for this setback!

    We had a bad experiences with our son's first pdoc. He was in our insurance plan, but after a few visits we didn't care how much we had to pay out of pocket to see someone who actually cares and listens and helps. So now my son sees someone who does not accept insurance but is so amazing. He works with us as partners and it's been so great for my son. I found him through the bpkids.org referral search.

    Our saving grace has been lithium. Seriously, it's like my child is back. I wonder if giving lithium a try might be worthwhile.

    I'll be praying for ya'll!

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  5. Mama Bear,
    Is there any chance you could get a new pdoc? I also went thru this with my daughter and the 3rd time was a charm. I encoutered the same type of ambivalence and it is maddening! Don't leave him until you have another one,but perhaps starting to look would be a good idea. I feel so bad for you and your son and will keep you all in my prayers.

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  6. I don't pray as much anymore, but i will remember you in the few prayers I have.....
    Maybe not a practical help, but....

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  7. love....love....love.....can you feel it?

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  8. Is there a better medical team for your son or can your doc wise up with a different approach? Our doc seemed aloof and unprofessional until he "nailed" a diagnosis on our daughter: and since has been the most attentive and sensitive advocate we have. God bless!

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  9. I personally would not stay with a doctor that wasn't willing to review a mood chart. If you have taken the time and energy to track the changes and the meds over the three years since your sons diagnosis then I would feel like that is invaluable info. Because that is exactly why the mood charts are such a great tool for communication. Otherwise I would feel like especially since this is not likely the same doctor you have had for the entire 3 years that your son will have unnecessary changes perhaps if the doctor is not willing to see what has already been tried before he became his doctor especially. I would recommend Dr William Hughes at Sutter Center for Psychiatry personally in Sacramento. This is a really tough situation. I so feel for you. sw

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  10. Just a side note, not all pdocs who don't take insurance are good. We had one that charged what seemed like a shocking amount, and he came recommended from friends, so I thought he would be the ticket. But he did not click with either my son or me. He went with the original diagnosis my son had been given by someone else (ADHD) and things got much worse under his care.

    We managed to get in at the Lucille Packard Children's Hospital at Stanford (which can have a long wait) but they are also on our insurance (BC/BS). So far I've been happy, but the drawback with that is the the pdoc we've been seeing was on a fellowship and she graduated this month, so we have to make a transition. But she was very appreciative of the detailed notes I take. (which was something the first psychologist encouraged.)

    It is my opinion that a good doc will be interested in all information available to help your son and not be so self centered to believe that only they have the answers. The pdocs have the expertise with the medications, and have prior patients responses to meds to bring to the table, but we have the expertise on our children and how they as individuals react to the meds, and life in general.

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  11. Wow! Thank you all for such valuable information, you really know your stuff!

    I do think that maybe Kaiser may be our problem (as Meg pointed out), I’ve heard this from several sources, so my hope is that when we can change plans we can move on to something better. In the meantime I will be seeing our pdoc in a month and will bring a list of questions. I'll keep in mind the tips you all gave.

    SW- Thanks, I'll look into your referral!

    Heather-I love what you said about our expertise on our own children!

    Dawnelle- I do! Love you too!

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  12. Yes, there is better care out there! I will pray that you can find it. It is so important to find someone who "gets it" and who is knowledgeable and listens to you and your son.

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  13. I don't have any personal experience with Kaiser, but I know of someone who is getting good pediatric psychiatric care with it. She had to change locations I think, and there is some program or system that she had to invoke. But I don't know anything more about it.

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  14. I have Kaiser and was equally unimpressed with our care until I switched pdocs. I now have to drive 45 minutes to a different clinic, but I get MUCH better care and finally have a responsive psychiatrist! If you're stuck with your current healthcare, as we were, then do your best to find the best they have to offer. Ask around. Most of the psychologists we've worked with actually recommended our current pdoc, so we were much more optimistic about him than the last guy and the switch has been worth it!

    I'm so sorry you guys are suffering so much lately! :(

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