Sunday, June 12, 2011

Sweet Dreams

Yesterday at the pool, my son jumped out of the water and ran up to me. As he stood there dripping water off his suit, he shared that he loves to sleep at night. Interested in his urgency to share this detail I asked, “Why is that?” With a smile on his face he said, “Well first of all, when I’m sleeping I feel all comfortable in my covers and when I dream I don’t have an anger problem!” Then as quickly as he arrived, he jumped back into the pool.

I sat there with his words sinking into my mind... “when I dream I don’t have an anger problem.” It dawned on me then that he lives with his mood disorder 24/7! I guess it never occurred to me that it’s always there with him and that he’s “holding it together” more than I previously thought.

Thanks to his mood stabilizer, his terrible nightmares are almost a thing of the past, but to know that his only true relief from symptoms is during his sleep left me feeling sad. It also made me wonder if we should be doing more for him by adding another medication, such as Lamictal, or is this just a reality for those with mood disorders? Is there really no escaping it? How do we know when we’ve done enough and this is as good as it gets, verses taking the risks of more side effects to make things even better?

Can his life be as sweet as his dreams? Or are we just dreaming?

17 comments:

  1. He should not be struggling with anger daily. He is probably not stable. With the right medication he should be able to have some peace during the day. I know your son doesn't have a diagnoses yet but don't be scared to try new meds if they don't work you can always stop them. My daughter who is 8 has bipolar. Currently she is inpatient at the hospital for trying to stab her brother. They are adjusting her meds. She has been there a week and hopefully will be home soon. My only advice is his meds will constantly change, don't be afraid to try new ones. Just remember once you start them your not stuck with them, Your able to stop them at anytime. and adding one more med doesn't mean he is condition is getting worse it just means his body is growing.
    Kay

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  2. Lamictal was a life-saver for us! I was nervous to try it because of the risk of side effects, but the night and day difference that it made for my daughter was worth every risk. And Lamictal was the one medication that she has been on that we saw very little in the way of side effects. Once we got to a therapeutic dose, she was stable for about a year and a half.

    All of that said, I see your point about our children struggling with this 24/7. They don't get a break or get to take a vacation from dealing with mood disorders. I often say when I tell people about my daughter's condition that it is a part of who she is. It does NOT define her, but it is a part of her. The more I understand the struggles these kids face each and every day, the more I want to applaud them for continuing to get up each morning and hold it together as best they can.

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  3. Kay-I’m so sorry to hear about your daughter, this must be so tough on you all. I appreciate your encouragement. I was wondering, do doctors ever replace one drug with another, or do they just add them on. I guess I was wondering why they don't take away the Trileptal once he is stable on the Lamictal? Do they always pile one on top of the other?

    Kelly- I’m glad to hear Lamictal is working so well for you. I wonder now if the doctor should have put him on that mood stabilizer instead of the Trileptal. Especially since he deals so much with depression. Though at the time, the doctor we were dealing with wasn't paying attention to his symptoms, that is why we left her.

    I also agree with you 100% about realizing how amazing our kids are for getting up every morning, ready to go another day, knowing they have this in their life. To think a few days of PMS is bad for us women, imagine that 100% worse all the time!

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  4. I love that you mention PMS, I have used it to explain to, especially women how it might feel like. And to smokers without any nicotine. Just multiply it and add that it's 24/7.PMS and don't know but nicotine withdrawel I do know (and everbody around me....) So weather its fluctations of dopamin or seratonin, an eager amygdala or a jumpy hippocampus. Well Women tend to get the PMS story and sometimes even some men :-)
    -p

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  5. Lamictal is no longer working for us, but it was a miracle while it lasted. To answer your question, any doctor worth their salt will try to get to stability with as few medications as possible, at least in my opinion. Thankfully our doctor is never one to just "add on" something new without a very good reason and even then she is always thinking ahead to what she could cut out if she does have to add something else. We are on quite a cocktail, but everyone has a specific purpose and is helping gain and maintain stability. I pray you get that for your son as well!

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  6. Mama Bear, Our Dr tries to keep her stable on the least medication possible. I am not sure if your son is on any meds for depression but if so they could be the problem. I know he has not gotten an offical diagnoses of Bipolar but he has alot of the traits. Alot of bipolar patients can not take meds for depression cause it makes there bipolar symptoms worse. They must rely on mood stablizers only.

    My best wishes to you and your son

    Kay

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  7. I don't know if lamicatal will be the answer, as all our kids respond differently to these meds, but it sounds like there is still more room for him to feel better. I do think we tend to get used to the dark moods and the anxiety until we see that it does not always have to be that way. That being said, it sounds like your son is having some fun this summer and that's great!
    Betsy

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  8. Kay- You’re right about depression medication being a bad thing for those with bipolar disorder. Thankfully our psychiatrist recognized this and has purposely avoided antidepressants because of his "rapid cycling moods". So that is why he mentioned that we should maybe add a second mood stabilizer, to his current mood stabilizer (he takes tenex and Trileptal). He thought Lamictal may be the best choice because it tends to help bipolar depression.

    But he left the decision up to us, and it’s hard to tell what to do. We have seen an improvement with his rapid cycling and he seems overall more happier with the arrival of spring and summer. So should that be enough? Or is there more we can do to make him better? Or do we wait until things get worse (which can be around the corner when school starts) and adjust his meds then?

    I know that it’s good to treat with as little meds as possible, especially because our kids may have them for a lifetime and I don't want to lose the effectiveness of too many drugs because he had them too young. I know we have his teen years ahead and I would like to have options available when things can get a whole lot worse.

    It’s one of those things where we may not know if the medication is needed until after he takes it and shows us that he is much better.

    So the question I have for you, when your kids were stable with their meds, did they have any symptoms? We’re there mood issues day to day? Was their irritability off an on? What do stable kids look like?

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  9. The question I have for ALL of you:

    When your kids were stable with their meds, did they have any symptoms? We’re there mood issues day to day? Was their irritability off an on? What do stable kids look like?

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  10. In no way does medication make our kids perfect kids... lol. Each child is different so I can only speak from my perspective with my daughter, but for us stability meant that the issues we saw were appropriate to the situation. For example, we could say the word "no" and expect there to be whining and complaining, maybe even a few tears, but not raging. We were able to talk through tough situations that, unstable, she would have completely lost control in. In other words she was typical for her age and stage. We would have the occasional bad or off day, but usually a good night sleep and some down time would fix it.

    We use a number line to give numbers to her feelings. A zero is so depressed you can't get out of bed and a ten is so manic you feel like you are invincible. Our target numbers are always 4, 5, 6. Since my daughter tends to be mixed in her bipolar cycles, we are currently at 3 & 7 or 8. Since our goal is to be in the 4, 5, 6 range we are willing to tweak medications to get there. We also balance that with knowing that she is 12 1/2 and some of what we are seeing is also "normal" for the age, so good therapy helps us (and her) weed through what needs medication tweaks and what just needs time and maturity.

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  11. I think the key issue with your son, Mama, is that he is doing well but should not be struggling with the anger issue so much. You should go ahead and try the Lamictal. If it works, great, and if not try something else. I know our pdoc says Trileptal does not work as the teen years come on. It's just not strong enough. Also, I would question the Tenex as to if it is helping or hurting. Sometimes meds that helped in the beginning can stop working or be causing more issues than they are helping.

    Also, often times doctors start a new med and if that works they wean from the old med as they increase the new med so they aren't just piling one on top of the other. One is going away while the other is reaching therapeutic levels.

    For us, the Seroquel is what has helped the most with the anger. It also helps greatly with thought problems and delusions and hallucinations - none of which we saw until puberty started.

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  12. I just want to make a statement about the antidepressants. My father in law has bipolar with a co-morbidity of depression. So he does take an antidepressant along with a mood stabilizer. (but he was also middle aged when he was diagnosed.) And now in his late 60's he's still playing with medication, (with the help of his Dr of course.) But keeps returning to what was working before.
    So my son is also on an antidepressant with the idea of genetic compatibility. (and I'm sure this will change as he grows.) My son hasn't been diagnosed with bipolar at this point, he's NOS.

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  13. Thank you everyone for your feedback. I’m going to contact his doctor.

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  14. What insight your son has! Glad his dreams are peaceful. I've heard good things about Lamictal, but we haven't tried it ourselves. Our daughter got "the rash" when she tried it and had to stop immediately.

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  15. Stability for my son means that the majority of the time he is relatively happy. There are blips, outbursts and dark times, but the days are relatively uneventful of the most part.

    One thing to remember if you are going to try lamictal is that it takes a long time to titrate safely to a therapeutic dose. So if you start now, he may JUST be getting to where he needs to be by the start of school. We kind of wasted half of the school year for my son last year trying to get him to the right dose.

    Betsy

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  16. Accidental Expert- Ohhh, it’s that darn rash that scares me, I’m glad she was able to recover well from it.

    Betsy-You bring up an excellent point, starting now may be the best thing because it gives us the summer to get to the right level. I’m waiting to hear back from my pdoc, hopefully I’ll hear from him tomorrow.

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  17. Stability looks different for different people. Your son being healthy and happy with the occasional melt down will be the best thing to shoot for. I agree the summer is the best time to start new meds. If he has any bad reactions or has any major rage issues you are around to deal with them.
    Kay

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