Thursday, June 30, 2011

The Big Question

Ok, I’m getting ready for our appointment with our psychiatrist tomorrow and I have a big question that lingers in my mind. Can you help me with it?

In the beginning, a lot of us parents saw serious symptoms in our children that led to the use of medication. As the child grows, their brains and disorders change, possibly bringing on more symptoms. How do you determine what symptoms are caused by the meds and what symptoms are caused by the disorder?

What complicates it more, I ’ve been told that when you treat obvious symptoms like rages, once the meds reduce this symptom, underlining symptoms will come to the forefront. So how does one know if the depression seen in your child is a result of the rages being calmed, allowing this symptom to be seen, or a side effect from the current treatment or the mood disorder getting worse, bringing on new symptoms as they age?

Some may ask me, “Why does this matter, as long as you treat the symptoms, you help the child?” 

I would answer that before I bring on the “big guns of antipsychotics”, as our pdoc refers to them, I want to make sure that we aren’t creating the symptoms we are now trying to treat. 

Ultimately, this is why a diagnosis helps me, it lets me know we’re on the right track, but without one, how do we make the right decision? What if my son has depression and anxiety, but the current meds are making him have rapid cycling, thus keeping him away from an antidepressant? Or, what if this is early onset bipolar disorder, but the fact that he isn’t showing typical adult symptoms of bipolar disorder, he isn’t given the full cocktail of meds required to end his suffering?

Help! How does a Mom make sense of it all?


  1. I know this is not what you were asking for but here is my two cents.

    You are scared to put him on antipsychotics and running through the list of 'what ifs'. In the end no one can say for sure what are side effects and what is the illness. Not even your son will be able to interpret that. I at 28 years of age cannot decipher 100% what is brought on by the illness and what is brought on by the medicine. (not very helpful am I)

    On the the other hand I can tell you that if I were not on antipsychotics then I would be unable to hold down a job or be a good partner to my man. Without the aid of Abilify I know I would struggle with rages and intrusive thoughts about self harm and harming others. Before Antipsychotics I had mixed episodes and now that rarely happens. I would rather be on an antipsych than to go without because I can function and control my temper when on them.

    Do not worry so much about the 'what ifs' but instead worry about the rages ...and confusion... and violence... and instability...and the overall lack of mood regulation your son suffers from. It is no fun at all to be in the throws of mental illness so help it stop by putting him on an antipsychotic. You are in my prayers.

  2. We ended up at the same point a couple of years back. We did something very risky, but did it while he was hospitalized. He was on so many different meds, we didn't know what was responsible for what. So, he was taken off all meds to get a baseline.

    This was invaluable to us and he ended up on much less than he was previously. As I said, this can be risky and the only reason we did it was because he was hospitalized and monitored at the time.

  3. GB is 8 and has had psychotic episodes since she was three. She is miserable and I am miserable when she is not being treated for psychosis. J also is Bipolar I with psychosis. MK is Bipolar I without psychosis- just rages. Psychosis is very scary for the person experiencing it. They may be "big guns", but when they do their job, they make such a difference.

  4. I have to agree with In The Pink. Your son's symptoms are so severe at this point that the possibility of some relief that one of the "big guns" might provide seems to out weigh the "what ifs."
    However, it is most unfortunate and unacceptable that your pdoc is not giving your son adequate treatment. Were he as attentive as he should, he would be working very closely with you to carefully monitor your son and listen to your reports to help determine if the medicine is helping and determine what my be side effects.

    My son had a terrible reaction to Triliptal. He had horrible rages even more intense than is "usual" rages. Had we not been working with an awesome pdoc who knew us well, listened to us, and took our calls any time day or night, we may not have figured out it was the medicine causing the rage.

    Medicine can and will help your son. But your pdoc needs to be willing to do whatever it takes to be there for you to determine what works. And I'm pretty sure you have what it takes to hold him to this task.

    Good luck, I'll be thinking about you.

    I'm thinking of you.

  5. An anti-psychotic was first suggested for my son when he was 6, I think she even used the same term "big gun." My husband and I ran away shouting "NO!" But now... he's on that very same anti-psychotic that she suggested 4 years ago. We went through many harrowing trials of ADHD meds, before arriving here.

    The one side effect we've seen is significant weight gain--but we're still not sure if that is a med side effect or developmental--or (most likely) both combined. (or a side effect of the depression brought on by the social isolation created by the rages?)

    It's like untying the Gordian Knot--you just have to start following a thread.

  6. If you really question if the meds are causing the problem (and sometimes they can be), wean him off of them and have him go without for a while. But know that weaning can make symptoms worse for a while as the brain adjusts to being without. I would say also be completely ready to take him to the hospital if you need to and have a filled prescription of antipsychotics ready to go at home to help him if it all goes to sh*t. They work immediately and can be used prn.

    Antipsychotics are only 'big guns' if your son isn't psychotic or raging. If he struggles with these (and he does), they can be a life saver and give him the relief he needs.

  7. I think your pdoc is terrible. He has been so hesitant to give your son something that he clearly needs, and he's been instilling fear into you about these "big guns"... these are the exact meds that actually gave us relief! Our kids are not normal children and we are not the kind of parents that are quick to medicate at all costs. We have kids who are mentally ill and NEED medicine to maintain some sense of normalcy. From what my pdoc tells me, antipsychotics are not the type that need to build up in your system. They can offer relief immediately, and if they don't work out, you can stop without weaning off. TRY THEM! It sure sounds like your son would suffer less if he had them.

    I know you are on Kaiser like we are... is your pdoc responsive via the email system? Mine has been GREAT, and I update him daily when we start something new so we can both have a record of what's happening. If yours isn't responsive, keep a good journal of symptoms so you can see what is happening from the meds and what is an ongoing symptom that still needs to be addressed.

    For us, the abilify (and risperdal in previous months, but that one caused a severe weight gain for my little guy...) completely removed the rages. We haven't had one in a MONTH now! And because he isn't having rages anymore, his self-esteem has improved greatly and his depression has significantly lessened because he's NOT feeling so horrible about his uncontrollable behaviors. I think when you find the right medication, things will start to fall into place and you'll all feel better.

    THINGS WILL GET BETTER! Don't give up!

  8. Oh Honey AMEN and Amen! We are at the same place. I am weaning one med at a time this summer to try to establish (as A.E. said) a baseline. I'm terrified of keeping the hospital in mind if need be, but I am willing. One thing that is helping is to keep the siblings away from each other as much as possible, and to NOT be at home, but out at parks, campgrounds, and nature preserves. They are hiking, swimming, playing, picnicking, and exploring most of every day. That way, the melt downs and rages are away from peers and neighbors. I've also found that there has been less likelihood of incident too because they are completely FREE to just "BE". They are climbing, jumping, pulling, pushing, digging, throwing, swinging, hiding, screaming, rolling, running, exploring, shrieking, laughing, creating, singing, getting dirty or wet, "destroying", breaking (wood), throwing rocks, etc... and it is all in the realm of norm for where we are and what we are doing. My hope is that, if I can keep getting them to these safe places for most of the time during this transition I pray it can ease the stress for everyone. Every day we are going somewhere new around NYS; Most of the things we can do for FREE too! :)
    There has only been one full week with no school, and the ADHD med is completely stopped. That in itself has made a tremendous difference! I did not realize how much it was contributing to the agitation and aggression. :( That just makes me feel soooo guilty!
    I hesitate to wean the antipsych when they are going to camp for the following two weeks, but the fact is it is a VERY slow process. I pray they will be able to reduce their dosages as planned and still be able to participate in camp, but if not, I can always wait a week or two right? :)

    As for the anti-psychotics being "big guns", I guess because my kids started on risperdal several years ago (and it was unbelievably amazing) I have not thought of them that way. I have felt that measure of trepidation in regards to Lithium though. THAT is scary for me... :( Unfortunately, the current meds are no longer effective and yes, the side effects of long term use do worry me. On the other hand, the side effect of NOT helping them by using meds, is nearly unthinkable as the self harm, anger, and aggression that was there to begin with was unimaginable for such a little one.

    I agree, how does a mother sort it all out?! I like the analogy Heather gave, "untying the Gordian Knot--you just have to start following a thread."

  9. I do not know the correctness of this, but take a look.
    Note that mania and aggressive behavior have been reported in pediatric patients with ADHD who received Guanfacine. All such patients had medical or family risk factors for bipolar disorder, and all patients recovered upon discontinuation of guanfacine HCl.

  10. tenex is guanfacine HCl

  11. You inspired this post my dear. :)

  12. I would check out the following site:
    SSRI's and meds for ADHD can be very very destabilizing in BP disorder. Hence if you have any idea that your son may be BP and from everything I have read about your son and experiences and also my daughter and hers, it sure sounds like BP, then I would error on the side of caution and strongly avoid SSRIs especially which is likely what you will get prescribed if they try to treat what is interpreted as depression mixed with anxiety. What you are describing sounds to be like a mixed state of BP disorder. Much like what my daughter experienced and her diagnosis is Bipolar I. When she was hospitalized it was because we had her on a stimulant for ADHD bc of the same thing-her doctor was reluctant to diagnose her with BP as a young adoles (she was about 12 1/2) and kept upping the dose of stimulant-). This ultimately led to a severe mixed state with psychosis which is extremely scary and led to a 3 week hospital stay 2 of it inpatient. Luckily it did allow us to get a fantastic doctor who diagnosed her as BP and treated her. However she suffered needlessly as did our family. As well as from what we are told made it much harder to treat the bp due to the longer term trying low dose stimulants and then when we finally upped it the resulting psychosis. Of course she by that time was close to 14 so was able to hide the manic side better as you expect teens to go through mood swings and as older adolescents often mania feels good so she was hiding from us the more classic not being able to sleep etc.. However the accompaning depression and agitation and smiling one minute and almost look of pain the next by the time we got to the hospital was miserable for her. I was told at this point this is called psychosis. My point is this site is very good and you can learn alot of info. If you scroll to the top you can find a wealth of info on bp disorder. I agree with the posts above highly. I would discontinue his current meds but I would find a different doctor. I would strongly consider an antipsychotic such as risperdol or possibly abilify. You may have to be willing to try a combination of different meds. Antipsychotics from what I am told and read in books on such in low doses are used as mood stabilizers and are known to actually be one of the safest medications in mental health. SW