running out of ideas for medications - any suggestions?

Discussion in 'General Parenting' started by ellenr1, Feb 7, 2007.

  1. ellenr1

    ellenr1 New Member

    Hi everybody. Haven't posted in many months but I have a specific situation I'm concerned about, namely, my oldest, difficult child 2, is with a new psychiatrist who has a prettty good reputation among other docs and other professionals I've met through my divorce.

    She wanted badly to go off all her medications, and since she hasn't shown any improvement to her Major Depressive Disorder with SSRI's since she first started taking them nearly four years ago, we asked him to supervise a medication wash. She started tapering off Effexor, but he was concerned about her anger and sadness, so he prescribed Abilify.

    As of today, she has been off the Effexor for two weeks and is titrating (is that the correct term?) up on the Abilify to 10 mg. (she is at 7.5 today). The doctor says that's a relatively low dose, but last night she exhibited some restlessness and anxiety I hadn't seen before, like she wanted to climb the walls or jump out of her skin. She hasn't had any of really worrisome side effects, like tremors, fever, muscle stiffness, but I was wondering, have any of you seen your child get more "hyper" as the Abilify went up?

    The doctor said that our daughter has pretty much tried all the medications that help the greatest number of people, and what's left to try are things like lithium, that help a smaller number of people but help them a lot. Still, he said all he could promise with the lithium is that her depression wouldn't worsen.

    After considering the options he laid out, my daughter and I agreed that should the Abilify not help, she would like to go off of it and see how she is with no medications.

    What kind of support do you think we should be planning for her now? She currently is attending a therapuetic day school where she meets twice a week for one on one counseling with a psychologist and has weekly group therapy, plus she sees her regular outpatient therapist once a week, twice if she feels particularly fragile. Her dad is balking at the idea of therapeutic boarding school (cost, I think, but he says he's worried it isn't the right treatment for her ) and the staff at the therapeutic school say they don't believe she needs a 24-hour therapeutic milieu.

    She's not suicidal but she did try to cut herself again (hasn't done it for two years) a couple of weeks ago, superficially, and said it hurt, which is a good sign. She lapsed once last September and smoked a joint with some friends, but swears she has been clean for the past 18 months otherwise. She's pulling away from a lot of her old friends at public school but hasn't made any close attachments at her new school (total student body: 13 kids). She's miserable at my house and at her dad's house but we're worried that if we send her away to school she'll be miserable there, too.

    Is there any hope for us? :smile:
  2. Fran

    Fran Former Site Owner

    Ellen, I'm no pharmacist or doctor but could the irritability be a symptom of withdrawing from the SSRI's?
    I think if your daughter wants to try drug free and her behavior isn't dangerous you should give it more time and let the doctor have frequent updates.
    The other end of this equation is that her anxiety may intensify which may be an original symptom/disorder and one of the reasons for the medication.
    I'm just guessing since I'm just a mom.
  3. serenitynow

    serenitynow New Member

    My 8 yo 67lb difficult child started Abilify Thursday night (2.5 mg - I cut the 5 in half), as a last-ditch effort to try medications. He threw up Friday morning, but then was a changed person the rest of the day (the boy I know and love!). Because of this, after talking to the pharmacist and his p-doctor, we tried it again Friday night along with 1/4 of an acid-reducer tab. (I grind up both and put it in a spoonful of pudding - only way I can get him to take his medication.) No problem with stomach next morning, and none since. He is back to the loving, focused child he was on Risperdal (gained tons of weight on that), but, yes, he is more jumpy. I've noticed that he gets upset about little things easier BUT gets over it fast. I'm really hoping this is going to settle down, because he is so much happier with himself. Good luck!
  4. Sara PA

    Sara PA New Member

    That crawling out of her skin thing could be associated with either dyskinesia, a side effect of antipsychotics, or the Effexor withdrawal.

    Anger and sadness could be side effects of the Effexor and/or from discontinuing the Effexor unrelated to why she was prescribed the medication.

    Effexor withdrawal could very easily continue for months.
  5. smallworld

    smallworld Moderator

    My son experienced akathisia, a side effect of internal and external restlessness that can look like anxiety or agitation, while taking Risperdal, Abilify's cousin. It went on for several days and became worse so we had to discontinue Risperdal. You should definitely watch your daughter and report any worsening behavior to the psychiatrist.

    I recently read that patients with treatment-resistant depression often improve when an SSRI is augmented with the mood stabilizer Lamictal. Because my difficult children are depressed but flip out on SSRIs alone, we have them on Lamictal, which eased their depression, but not enough. We have now added in a small dose of an SSRI (Lexapro), and they are improving greatly. It may be something to consider.
  6. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I didn't read all the replies, but right off the bat I can tell you that Effexor has a terrible withdrawal syndrome that can take a long time to get out of the system. Even after the drugs are gone, often the brain chemistry is still messed up. Effexor and Paxil have such bad withdrawals that often the parents think the child NEEDS the medication when it's the withdrawal syndrome taking hold. The restlessness could well be due to the withdrawal and it could be stopping the Abilify from working. Has this child ever been tried on a mood stabilizer rather than an antidepressant? Just a thought. I know Abilify can cause some kids to get hyper and also get the shakes, but have no first hand experience with it--none of my kids or me took it. Hope things get better soon!
  7. ellenr1

    ellenr1 New Member

    Our daughter started on Zoloft alone 3 1/2 years ago. At the time she was diagnosis'd with-MDD, she was acting out a lot, throwing stuff, raging, cursing, defying authority. Within a year, she was "cutting" and making suicidal gestures.

    During her first hospital stay they switched SSRI's to Lexapro and added Risperadal. The side effects of Risperadal were nasty (breast discharge, huge weight gain) so they replaced it with Lamictal.

    A year later Welbutrin XL was added. Six months after that the Lamictal was discontinued. The levels of Welbutrin and Lexapro were tweaked. At one point she was up to 450 mg. Welbutrin.

    Last August we discontinued the Lexapro (she was sick of medications and we didn't see much reason to continue with the same "cocktail") and restarted the Lamictal.

    In October we added Effexor and upped the Lamictal to 125 mg.

    In November we upped the Effexor to 150, the Lamictal to 150, and stopped the Welbutrin.

    In December we stopped the Lamictal abruptly after she developed a rash on her neck and shoulders. The new doctor weaned her off the Effexor and added Abilify.

    So, what I'm seeing is that although my daughter has never been diagnosis'd as Bipolar, she has usually had some kind of atypical antipsychotic or mood stabilizer to control mania. She went from hurting the furniture to hurting herself on SSRI's. I should also mention, that on at least two occasions, she stopped taking her medications without telling us and then had a bad reaction from the withdrawal/sudden restart. She also experimented with pot in her freshman/sophomore year, not a lot, but we know that some of it was contaminated with PCP, which probably worsened her depression.

    We've changed insurance carriers at least four times over the year (my ex-husband's business kept trying to find a better deal) so we've changed docs as well, and they all have different ideas about medications. We chose this new guy because we heard he is on top of things and he is not adverse to supervising a medication wash. Some of the others seemed to throw pills at everything and did their damndest to keep her medicated, to the point that I think we've been poisoning my little sweetie. She has suffered a lot. I'd be angry if I wasn't so exhausted!

    Anyway, I thank you all for your thoughtful, prompt replies. It makes me feel so much better to know that I can post a frantic rant and I'll always get answers from you all. Thank you so much for that.
  8. smallworld

    smallworld Moderator

    Ellen, was the rash your difficult child 2 developed while taking Lamictal definitely the life-threatening one?

    If not, this is my "mom" opinion based on many, many medication trials with my own kids: I would give Lamictal another try ON ITS OWN (no antidepressants). I would recommend starting very low and going very slowly (we started my difficult child 2 at 12.5 mg and went up in 12.5 mg increments every 2 weeks). And then when she reaches a therapeutic level (typically 200 mg for an adolescent), evaluate her depression. If she is still depressed, add a very LOW dose of an AD so as not to induce mania.

    I hope you find a medication combo that works for your daughter.
  9. Sara PA

    Sara PA New Member

    Stevens-Johnson Syndrome (the dangerous rash) is very rare to begin with but it's highly unlikely to develop it after being on a drug for five months, and even more so when there had been no increase in dosage.

    Based on my son's experiences, I wouldn't be surprised if your daughter is still noticing changes from discontinuing the ADs a year from now.

    To be honest, I wouldn't add the Abilify to counter the Effexor withdrawal. I'm beginning to believe that antipsychotics are as difficult if not harder to discontinue than ADs.
  10. mrscatinthehat

    mrscatinthehat Seussical

    I understand wanting to make a change. Not only do the kids get misdiagnosed but us adults do as well. I was on quite a combo of medications last summer because the anxiety I have is due to PTSD not the bipolar they tried to make me out to be. Now I am not saying the medications don't work but if she can handle being off and that includes the withdrawal period. Paxil withdrawal for me was so awful. Now I just have ativan for extreme anxiety days. I don't know if she is capable of looking at it the same way as she is 16 but in my case I have the opportunity to take up to 3 a day. Haven't taken one in several months. It helped take the edge of in the beginning and now I don't take them hardly ever. Again I am no Doctor and I am an adult but seeing as how she is 16 she may or may not have the ability to rationalize it if she doesn't want/need the medications. Just another look for you.

  11. ellenr1

    ellenr1 New Member

    Ellen, was the rash your difficult child 2 developed while taking Lamictal definitely the life-threatening one?


    Actually, she got the rash when the Effexor and Lamictal were both upped at the same time. She had tolerated the lamictal well up until that point, so was it the level of lamictal (150 mg), or the higher dose of effexor (225 mg), or both? I took her to the pediatrician first, who prescribed a cortisone cream. Besides the itchy rash on her shoulders, upper arms, thighs she was also experiencing nausea, vomiting, fatigue, dizziness, stomache pain, gas, insomnia, increased depression and anxiety. Not a fun time.

    The APRN who was managing her medications at the time took her off the Lamictal, probably fearing a lawsuit, but she was sorry to have to discontinue it, thought it was a good drug. by the way, the rash, nausea, dizziness and agitation disappeared two days later.

    After reading all your replies, I am really questioning whether we should even bother titrating up on the Abilify to 10 mg. if she is having insomnia again. She is so exhausted all the time I was going to call the doctor to ask for a sleep aid, like Ambien. IN the meantime, she woke up this morning looking just awful, pale, and the left tonsil is swollen up again larger than the day before. Her pediatrician said to take her to an ENT no later than tomorrow for an exam and possibly bloodwork to determine if it's mono or something else.

    I really feel badly for my kid. The director of her therapeutic school thought she was malingering yesterday and wouldn't let her call me to come get her early, told her to tough it out despite her headache, didn't notice that she'd had her head down on the table all through group therapy. Don't get me started on him....
  12. Sara PA

    Sara PA New Member

    "The APRN who was managing her medications at the time took her off the Lamictal, probably fearing a lawsuit, but she was sorry to have to discontinue it, thought it was a good drug. by the way, the rash, nausea, dizziness and agitation disappeared two days later."

    I was convinced it was S-JS when you mentioned the nausea because flu symptoms often preceed that rash. Then I changed my mind when you said it the rash went away in two days. I may be wrong, but my understanding is that the S-JS rash does not go away that quickly. It could have been the benign rash which is far more common with Lamictal or the rash and other symptoms were viral and had nothing to do with the medications at all. If you wanted to restart the Lamictal, you could ask the APRN to research the likelihood that a S-JS rash would disappear in two days. Most people who develop the benign rash can successfully restart the drug.

    That said, all those symptoms could have be caused by that high dose of Effexor, which was the maximum recommended dose for adults. Doctors were sent letters years ago stressing that Effexor is neither approved or recommended for children and adolescents.
  13. ellenr1

    ellenr1 New Member

    She's has had that benign rash (exacerbated by long hot showers and the indoor dry air) since Thanksgiving, and that's when the effexor was upped to 225 mg. and the lamictal upped as well.

    So her mood has been fragile, crabby, depressed, and I've been chalking it up to the divorce and not getting her way about attending a therapeutic boarding school. Now, I think you have to throw in there the withdrawal effects of all the AD's, mood stabilizers and atypical anti-psychotics she's been on.

    Get this: I'm waiting for a call from the ENT to find out if she has mononucleosis! She got sick nearly ten days ago and her pediatrician put her on Augmentin for strep, even though the strep culture was negative. The sore throat went away but not the fatigure, and she had a bulge on the left side of her neck that got bigger and smaller depending on how tired or rested she was. The ENT is 99% sure it's mono, which would account for some of the symptoms that I thought were medication withdrawal.

    I called her psychiatric doctor yesterday to tell him she has been unable to sleep for the past couple of days and he phoned in a sleep aid so she could at least get some rest at night and resume school (before we suspected mono). My daughter spoke to him when he called back and he told her that he thought that the Effexor "was out of her system by now."

    Now this guy commands a lot of respect in our community and gets $500/initial exam, $250 for follow up medication managment visit (our plan doesn't cover him so we pay O-O-P and are praying that Cigna Behavioral will give us something back). Everyone says he's the best. He is willing to supervise a medication wash and from reading the posts, I'm leaning more and more that way.

    She upped her dose of Abilify to 10 mg. today. If the agitation comes back and doesn't go away, then that's it.
  14. Sara PA

    Sara PA New Member

    I absolutely cannot believe that there are still doctors who don't understand the long term withdrawal problems that come with antidepressants, especially with Effexor.

    My son had mono a little over a year ago. Much to my surprise, even though he was very tired and couldn't do anything, he didn't sleep well at all. I always thought people with mono slept a lot; maybe some do but my son didn't. But then his throat almost swelled shut and he thought he was going to die; I think part of it might have been he was afraid to go to sleep.
  15. Vanilla

    Vanilla New Member

    Wow, Ellen, it seems that your kiddo has been tried on most everything available. My son initially improved on Abilify (very low dose, 2.5 mg) but he quickly seemed to develop a "tolerance" to it and one week at Boy Scout camp he abruptly quit taking it. When we picked him up he was aggressive, labile, just worse than I had ever seen him. We started it up again but never really saw any more positive results. We tapered him off then and haven't resumed it. Currently he is on a low dose (10 mg. daily) of Lexapro and this has been somewhat helpful. Good luck, I hope you do find something effective! Vanilla
  16. Sara PA

    Sara PA New Member

    The normal recommended dose of Lexapro is 10 mg. That is not a low dose but a full adult dose. The recommended dose range is 10-20 mg/day but the clinical studies found no benefit in the higher dose
  17. ellenr1

    ellenr1 New Member

    Ex-husband has a business associate in London who is deep into natural healing and ayurvedic stuff. He and his sister, a chemist, started a naturaly healing emporium where you can buy health food store stuff plus get a massage or do yoga, very big in the UK. This guy has been telling us for years that we should get our daughter off the pharmaceutical stuff and I just dismissed him (I tried both St. Johns Wort and Sam-E for my own mild depression and didn't notice anything), but I'm thinking that perhaps my ex should take her to England this summer and have these people take a look at her, if we do the medication wash. I can't imagine it would hurt.
  18. sameold sameold

    sameold sameold New Member


    Maybe this has been mentioned and I missed it, my son has major depressive disorder and since they have added Cymbalta, he does not actively say every day, several times a day, that he wants to kill himself. It is the only medication that has helped him with his suicidal ideations. Things are far from perfect, but at least he is doing better. Good luck
  19. Sara PA

    Sara PA New Member

    Cymbalta is the same type of drug as Effexor, an SNRI/SSRI antidepressant. Substituting Cymbalta for Effexor is probably not the way they want to go. Same withdrawal issues though possible not as severe.