Monday, April 18, 2011

Keeping a Watchful Eye

If you read my post Scary Noises, you may recall that my son was starting to struggle. After experiencing the noises and anxiety at school we stared to see some sadness return, then a small amount of anger and impulsivity with a little cycling. Most of these symptoms lasted for a very short period and didn’t occur that often. Our concern was that they were occurring at all.

Then he had a day where he became upset and started violently hitting himself on the head with a large heavy book and hitting his body with a plastic sword. While trying to calm him down, I asked him why he was doing this, his response was, “I don’t know, I just need to hurt myself”. After a few minutes he was back to normal.

This was the first time we’ve seen him trying to hurt himself instead of trying to hurt others. I don’t know if this was his way of trying not to rage against us, or if this was a new thing all together. Either way it concerned me so we went to his psychiatrist the next day.

At our appointment, our psychiatrist didn’t seem too concerned about any of his symptoms, he just said that they don’t know why this happens and that time will only tell if this is truly a bipolar disorder or just depression and anxiety. When he asked my son how he’s been, my son said, “I feel sad, like all the time.” Having recognized that my son was having cycling moods, The doctor wanted to avoid putting him on an antidepressant. (Treating bipolar children with an antidepressant can have very dangerous results).

So in order to address his depressed feelings, he suggested adding Lamictal to his current treatment of Trileptal and Tenex. Lamictal is an anticonvulsant, just like Trileptal. It’s used in bipolar children as a mood stabilizer. It’s good for treating rapid-cycling and mixed bipolar states and helps a lot with the depressed state of bipolar disorder. (Papolos, M.D., Papolos 2006, p. 99)

The down side of this medication is the rare risk of having the Stevens-Johnson syndrome or the more deadly toxic epidermal necrolysis. These are severe and sometimes fatal allergic reactions to this medication. (Papolos, M.D., Papolos 2006, p. 99)  It was disappointing to hear our psychiatrist say that this was the most benign direction we could take.

With my son already on the max does of one anti-seizure med, Trileptal, our psychiatrist said that adding a second anti-convulsant would increase these risks.

Considering the short episodes of symptoms, our psychiatrist felt it was best to watch and see if he gets worse or better. With him recently having a virus, it may be possible that the symptoms are a result of his body being sick, or it could be the illness itself in the depressed phase, or the winter weather making his symptoms worse, heck it could be the result of all of the above. But our doctor felt that we had some room to see how the spring weather effects him, if we see an improvement overall it won’t be necessary to add a new medication just yet.

I know some may be thinking that we’re foolish for not addressing these symptoms with meds today, but we have to take these medications seriously. My dear uncle had the Stevens Johnson rash from his anti-convulsent medication during his cancer treatment. It was more than a rash, the worst thing for him was his throat swelling up and cutting off his breathing abilities. His face and lips were swollen and he developed big blisters all over his chest, back, face and head. My own mother almost died while on vacation in Hawaii when her anticonvulsant (taken for seziures) brought on kidney failure, which happen to be a side effect that affects only 1% of the population. So I’m well aware of the risks that are involved and have to weigh them with the current state of my son.

There’s no way of knowing if this is the right decision or not, only the future will tell. But today I’m happy to say that my son has been doing much better. He’s happier, more engaged with the family than he was a few weeks ago. He has his rough moments, but they aren’t constant. Currently, we are carefully monitoring his feelings of depression while trying to keep him stress free as possible. But if things get worse, we’ll need to address it with more medication.

This is what is so challenging for us parents. There are no right answers. I wish our doctor could tell us the best decision based on statistics and research, but as he told me, we just don’t know enough about it.

Only time will tell.


* * *

Do you have any experience with your child being treated with Lamictal or being on two mood stabilizers at the same time?


* * *

References:
The Bipolar Child
Demitri Papolos, M.D. Janice Papolos
2006

13 comments:

  1. Lamictal is a great med for a lot of people. My son, unfortunately, had a bad reaction to it. Within 3 days it made him completely manic and gave him a rash (which was not 'the' rash but some kind of allergic reaction, nonetheless). Your son may start to feel better as the end of school nears and summer comes. A lot of kids get really anxious over the end of school testing and once that is over they are fine.

    ReplyDelete
  2. I have been going through a similar struggle, although my daughter is doing really well, overall. We too are considering Lamictal. In our case, it would not be in addition to my daughter's current meds (Abilify & Focalin), but to replace the Abilify, which she has been taking as a mood stabilizer. Our main reason for considering the switch is the weight gain she's experienced since being on it. I think you are right to be cautious about adding the Lamictal even though the rash is rare. Our doctor said he's had a couple of young patients develop it, but that it was very obvious and controllable by just stopping the medication. Still scary. Like you said, the fact that there are no right answers is one of the toughest things to deal with. I really like our pdoc, but half the time I walk into his office thinking I'm going to get just the information I need to make the best decision for my daughter, and I leave even more confused! I try to remind myself that ALL medications have potentially deadly side effects.

    Also, my daughter used to hit and punch herself all the time. But she does it a lot less often now. And she did sometimes say that if she didn't hurt herself, she would hurt someone else.

    ReplyDelete
  3. That's a good point Meg about the stress of school ending, I’ll keep that in mind.

    ReplyDelete
  4. Bugs Mom-
    I understand you wanting to change with the weight gain issues, we really want to avoid that, he has enough issues with his self esteem, we don't want to make it more difficult.

    You're right that all medication comes with risks, it sucks huh!

    ReplyDelete
  5. We recently added lamical to my son's meds (in addition to risperadone, intuniv, concerta) and it has made the world of difference. He is finally happy much of the time, like we remember him from a couple years ago. But it took almost 7 months to get him to a theraputic dose because the pdoc was being cautious due to the risk of Steven Johnsons. I'm pretty sure the research shows if the dose is raised slowly (and it can seem painfully slowly) the risk is greatly diminished.

    Betsy

    ReplyDelete
  6. That's very encouraging Betsy! So was your son struggling with depression and the Lamictal was added to address it? Or was it added for other symptoms?

    ReplyDelete
  7. He was very irritable and explosive. The rages were somewhat under control but he was quite short tempered. I didn't think of him as depressed, although there was times he would descend rapidly into despair (I suspect you know what I mean!). We actually didn't realize just how unhappy and irritable he was until he was better and we remembered how happy he could be. Seeing him smile so often now sometimes makes me cry with joy. And my husband has shed a tear or two as well!

    It is really important for you to know how long it will take to titrate the dose to a theraputic level. If we had realized that, we would have started sooner.

    I know these meds work differently for different kids so obviously I am not saying it "the answer" for your guy. But I do know we all run the risk of getting used to the "status quo" because it is so dang scary to deal with all these meds! But please do your research on Steven Johnson (I went to high school with a guy with that name and it makes me smile when I type it) because I think with an abundance of caution, the risk can be safely managed.
    Betsy

    ReplyDelete
  8. Betsy- You make a great point about getting use to the status quo. I think that is one of the challenges I face, do we cope with where we are or do we treat with more meds. Very tough decision.

    ReplyDelete
  9. Hi Mama Bear, I've written you once before regarding my 3 boys who all struggle with mood/depression issues. I can tell you that all 3 of mine have had great success on Lamictal and I highly recommend it. It worked for a couple of years with 2 of the boys and my other son has been on it for 7 years now and has not had a single mood swing since he got to a therapeutic level! I agree with Betsy - my favorite child psychiatrist said that it's safe if you titrate very, very slowly. For us, that was 12.5mg at a time until he reached 100 mg. It took forever! And I was doubtful it would help, but it did! If you watch for the rash and are proactive if it shows, it is managable. There are many cases of people getting SJS and once recovered, started taking Lamictal again successfully, by titrating slowly. I work at a children's hospital and I can tell you that many drugs can cause this reaction. Antibiotics, chemo drugs - almost anything can create this potentially deadly reaction. But with Lamictal, it was noted because it happened when people started on it too quickly. For my family, it has been a life changer! Two of my boys have moved on to much heavier-duty drugs after the Lamictal stopped working, but it was a godsend while it did.

    Also, don't know if you're a member, but I've gotten great information from the member forums of the Bipolar Kids Foundation over the years. I value the information I've gotten there. It's a good place to see what meds are working for other people and what their experiences are like. Check it out if you haven't already. www.bpkids.org Good luck.

    Vicki

    ReplyDelete
  10. Vicki- Thank you so much for your feedback, I find it very encouraging! With my son seeming depressed a lot, I have a feeling this may be a wonderful solution for him. I was wondering, did they add this medication to your kids current meds, or did they take away something and replace it with Lamictal?

    ReplyDelete
  11. In our case, it was the first drug we tried with each of them as their mood disorder progressed. For two of them, after it was at a therapeutic level, we were then able to add an antidepressant (prozac) which they are very sensitive to. The combo worked for a couple of years, then we had to add on Wellbutrin. Now that one of the twins and my youngest have had the Lamictal stop working altogether, we just tritrated down as we added a different mood stabilizer. We tried Abilify but it had no effect whatsoever, and coming off of Abilify (even so very, very slowly) was horrific and I will never let one of my kids use that drug again. Not to say that evey child will have this reaction, just that mine did. At this point, they are all three on different "cocktails." My 11 year old takes Risperdal and prozac (Risperdal was a life saver after trying several things without success), my son with Aspergers takes Lamictal, prozac and Wellbutrin, and his twin is on Depakote, prozac, wellbutrin and small dose of Risperdal. Like you, the primary symptom besides depression is the intense anger. The two "non-Aspie" boys suffer from extreme emotions that are crippling. But, I have to have faith because years ago, the other one did, too and we could not envision a time when he would be as stable and happy as he is. So, it's all about finding what will work and being willing to change as their symptoms come and go. I wish we lived near each other because I'd buy you lunch and let you vent all this frustration. I have been there! I am there! We watched our kids lose friends because of the disorder. But, I can say now, they have managed to find a handful of kids who love them and have a certain understanding about their illness. So, age does help. Middle school sucks....but then they seem to get better with age, so hang in there. *hugs*
    Vicki

    ReplyDelete
  12. Let me clarify again that I really do think Lamictal helped all three with the depression side of the illness. However, when the mood swings returned and we were forced to use a different Mood Stabilizer, we went ahead and tried different antidepressants. I did notice the depression return with one son after stopping the Lamictal.

    Vicki

    ReplyDelete
  13. Thanks so much Vicki, I need these encouraging words!

    ReplyDelete