So Tell Me About The Uncommon medications

Discussion in 'General Parenting' started by Janna, Dec 30, 2007.

  1. Janna

    Janna New Member

    that may be working for your kid.

    What do you do when you've tried them all? :hammer:

    Dylan's hyperactivity and impulsivity are skyrocketing. We had him 6 full days over the holiday, and every person that came in contact with him said he seemed "10x worse", "ready to jump out of his skin", "couldn't understand him because he was flying from subject to subject" get the point.

    He's still on the 25 mg. of Luvox, I don't think it's doing anything, but I don't think it's really supposed to be either, at such a low dose. I think psychiatrist is just making sure he doesn't have any negative reactions. I haven't seen any.

    But, I don't think Luvox is going to help with ADHD stuff. I wish you guys could all meet him for a few hours. You would see. He's 100x more than an ADHD kid. I just can't get it here, in type, how bad it is.

    So, anyway ~ I know all the typical stuff. We've tried them all LOL! How about the odd ball stuff?

    And what about the "chill out" pills like Xanex? What was the other one our old psychiatrist wanted to try? Ativan? Something with an A that everyone said was addictive. Hmm...can't find my notes.

    What about Valium?

    I'm seriously serious (haha) about finding him something to calm him down. I don't know that the current Residential Treatment Facility (RTF) psychiatrist will be in agreement, but if he can't compromise, we may have to find other options as far as psychiatrist's go.

    Here's the list he's tried so they don't get brought up:

    Tenex. Clonodine. Ritalin. Metadate. Concerta. Dexadrine. Adderall. Strattera. Topomax. Tegretol. Abilify. Seroquel. Risperdal. Zyprexa. Geodon. Depakote. Lithium. Wellbutrin.

    I'm probably missing a couple. I'm tired. And he's tried some of these more than once, and I'm fully uninterested in trying any of these again.

    I'm only looking for suggestions, so that I can go read up on some stuff online. I know nobody here is a doctor, but I know there's medications out there that can possibly help my son that I'm unfamiliar with . I did mention Propranolol or whatever it is LOL, psychiatrist said nope. And Lamictal, psychiatrist said nope (but I dunno that he even needs a mood stabilizer at this point).

    I'm telling ya, he just needs a "CHILL OUT" pill. Honestly LOL!

    Thanks ahead.
  2. DDD

    DDD Well-Known Member

    I don't know of any new medications but I have very often noticed that
    dosages are extremely low. I understand you have tried all the
    stimulants but if they just didn't work (as opposed to causing
    additional problems) did you research the amount prescribed.

    Here's what my difficult child was changed to by our wonderful caring, old and experienced "new" psychiatrist about three years ago. This combo
    has worked wonders and we have had no side effects. Each AM he
    takes 72 mgs of Concerta. Yes, 72. I have had kids with ADHD since the l960's and I never knew anyone who took that much. My
    skinny (but healthy kid) does and it works just right. He takes
    two 500 mg. of Depakote and he takes a total of 1.5 mgs of Risperdal. A few times a week he has an Ativan (1 mg) if he is
    very anxious or tense.

    Obviously I am not endorsing or encouraging you to try this regimen but for us this more experienced Psychiatrist inspired
    my confidence (not an easy and larger quantities of
    previously tried medications did the trick. difficult child can still be a difficult child but
    he hasn't been written up once at school etc. since this change.

    My only other thought is allergy testing. Have you tried that
    yet? Sending understanding hugs your way. DDD
  3. smallworld

    smallworld Moderator

    Is Dylan more hyperactive and impulsive since starting Luvox? If so, that could be a side effect.

    Here's some info on Luvox dosing:

    For children aged 8 to 17, the recommended starting dose is 25 milligrams taken at bedtime. The dose may be increased to a maximum of 200 milligrams daily for children under 11, and 300 milligrams for children aged 11 to 17. Young girls sometimes respond to lower doses than boys do. Larger daily dosages are divided in two, as for adults.

    Dylan is on a very low dose of Luvox, plus it takes 4 to 6 weeks to see any benefit. It may calm him down -- SSRIs can do that -- but it takes time. If he's not experiencing side effects, I'm not sure you've given it a fair trial.

    Both Ativan and Klonopin, which are Benzodiazapines, are prescribed for anxiety, but they can be addictive and require higher and higher doses over time. Ativan works quicker and for a shorter period of time. Klonopin takes longer to kick in but works over a longer period of time.

    What happened when Dylan took Seroquel (I ask because my son just started taking it)?
  4. Peaceful

    Peaceful New Member

    You've tried lots and it does get frustrating. I know it's difficult and I feel for you. We tried Xanax, Ativan, Klonopin and Valium for sedation and they don't work for daughter.

    Have you tried Invega? Moban? Lamictal? Gabatril? Rozarem? Trileptal? Buspar? Focalin? Keppra? Effexor? Provigil? Nuvigil? Cogentin? Mirtazapine? Cymbalta? Stelazine? Tenex? Not saying any of these would work as every child is different but they're options that have been shown to help the symptoms you're describing.

    If you want to go the natural route - fish oils? Amino Acids? 5HTP? Inositol? Folinic Acid Supplements? NADH? Methyl B12? Alpha Stims (clips on the ear)? Melatonin?

    Just some ideas in case they can help you out. Perhaps the trials on the medications he's already taken weren't long enough etc but I know that gets frustrating to hear too. Good luck!

  5. jannie

    jannie trying to survive....

    My 10 year old is taking Vyvanse...which is the newest stimulant...made my the same manufacturer as Adderall--it seems to be helping. My son is also taking lexapro which is an anti-anxiety anti-depressent.

    Is it possible for Dylan to retry abilify? My older son took abilify for about 6 months. He is not diagnosed with a mood disorder--it did calm him down and take the edge off. It did help with the activity and impulsivity. I know Dylan was on this for a long time...but is it ppssible that he begins taking it again...starting slowly? Maybe the side effects won't be as bad...
  6. mrscatinthehat

    mrscatinthehat Seussical

    Sometimes it takes more than one medication to get them on the right combo. I am none too excited about all the medications that difficult child 1 is on but this last change seems to be the right mixture. Sometimes it is not just the dosage but sometimes they have to be in a combo with some others.

  7. jannie

    jannie trying to survive....

    What does the Residential Treatment Facility (RTF) say about this? Are they just saying it is just severe ADHD? What are they suggesting? How does one know if it's severe adhd or more of a mania? There are times my kids are totally bouncing and I wonder what is really going on????
  8. Sara PA

    Sara PA New Member

    Janna, how much does he sleep at night? Or rather, how much would he sleep if he were allowed to fall asleep when he was ready and wake up on his own?
  9. timer lady

    timer lady Queen of Hearts


    We've revisited some medications as the tweedles have grown - would that be a possibility? I know for wm, psychiatrist added risperdal back in, & that worked wonders for him. by the way, if you ask wm to wear a pedometer he'll have 10,000 steps on it by noon - that level of "busyness" is wearing on a mother/foster mum/school, etc. (And wm isn't ADHD - his is a matter of trauma induced anxiety. )

    Just wondering if revisiting some of the old favorites might be worth it.
  10. SearchingForRainbows

    SearchingForRainbows Active Member


    I'm sorry I can't help you with this. I just want you to know that I'm thinking about you and praying you find something soon that helps Dylan!!! WFEN
  11. Janna

    Janna New Member

    Ok, let me see if I can get to everyone lol ~

    DDD, no, no allergy testing yet. He was on Flonase for a good while, because all the pills (Claritin, Singulair, etc) stimulated him. The Flonase seemed to do okay, but the Residential Treatment Facility (RTF) pediatrician doesn't care for it because it's a steroid. We d/c'ed it, just for now, with the rest of the medication wash. It's a good thought, though. He did try Concerta, twice - this most recent time was 36 mg. Maybe it was too low, but the psychiatrist didn't seem to want to increase. Will have to add that to my list to question with him.

    SW, the Seroquel, Dylan took around the age of 5. I have asked a couple of times to revisit this one, and it keeps getting swept under the carpet. I think that happens because of all the negatives from all the other AP's in the past. But, when he did take it, it made him very, very groggy. Almost comatose, to the point he wouldn't wake. I have several teen friends on my Bipolar Support page also that are on this, that complain of feeling like cr*p, he*l and everything in between, but they may be more severe than J is. But then, at 5 years old, I dunno if Dylan was given the ample time. It's on my list, still, to think about LOL. The Luvox, I'm giving it the chance. I just want other things to back up, in case it doesn't work. The plan is to keep Dylan at the 25 mg for 3 to 4 weeks then discuss with psychiatrist where to go. I think right now we're just making sure there's no side effects. No, he's not more hyper on the Luvox. He's naturally wired I guess lol.

    Peaceful, thanks for all those medications LOL! I'll read up, haven't heard of many of them. I have thought about the fish oils. Don't know anything about them. Have to research.

    Jannie, no, we won't retry the Abilify because of the previous side effects. Slurring, drooling, etc. I don't think they know what is going on with him. The current psychiatrist discounts the hyperactivity as mania and attributes it to the ADHD and Pervasive Developmental Disorder (PDD). But, the psychiatrist doesn't spend enough time with Dylan to make an accurate diagnosis. He may spend 10 or 15 minutes a month, if that, with my son. He takes reports in from staff, but the reports are not very thorough. When I speak to staff in the residence, they state he is very, very hyper. When I ask if they relate that to psychiatrist, they give me half a*s answers. I think they only write down super important incidents and everything else goes under the rug. I'm not very happy with the communication between everyone. Right now, I'm hearing the hyperactivity is because he's ADHD and Pervasive Developmental Disorder (PDD). I don't know if it's mania. There are so many different reports about what mania looks like in kids that I don't know if I really know what it looks like. Know what I mean??

    Sara, he doesn't fall asleep easily anymore. He used to on the Abilify - but not lately. Residential Treatment Facility (RTF) staff reports he goes to sleep fine, however, when he's here, he doesn't. I actually gave him a 5 mg. Melatonin ( the 3 mg didn't do squat) and it put him out, but I don't want to have to drug him to sleep. He's also up very, very early, always first, before everyone else. And very loud.

    Linda, I don't know what to revisit. So many of the medications had negatives, and those I'm not willing to retry. I understand the anxiety thing...Dylan could probably walk right beside wm. Dylan has the tendency to eat clothing when he's anxious. His sleeves and collar are always soaking wet.

    I appreciate all the input. I will print out the thread. I don't know what direction to go in. Right now I'm going to give the Luvox a try and see how it works. There's another child in Dylan's residence, lower functioning, but also Pervasive Developmental Disorder (PDD), that is doing well on it. That's a good sign.

    I would love this to be easy. I wish I could find one thing that would settle him down. The Lithium-Abilify combo was good for so long, but the sides were just too great to deal with. If it was one thing, i.e. weight gain, that would be one thing. But when you get weight gain, hypothyroidism, enuresis, drooling, slurring, etc....nope. Just won't do it.


    Thanks guys (SW, good luck with J)
  12. DDD

    DDD Well-Known Member

    I also relate to the "up very early" and "loud". That was difficult child.
    Finally I decided to get up as soon as I heard him stir and take
    his Concerta and a drink to him in bed. It made him feel special
    and so long as he stays in bed for ten or fifteen minutes before
    getting up, the medication often allows him to doze back off. It, for sure, helps him be quieter which is a biggie for me. DDD

    Re Concerta doses, easy child/difficult child got along fine with 64 and he was physically bigger than difficult child. Weird.
  13. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Janna, my own opinion is that the Luvox (an antidepressant) is causing a typical manic reaction. I've had many of them myself. Lucas can't take antidepressants. He took Prozac and thought he could fly and kept jumping off his desk at school plus he never shut up, which was the opposite of what he's like. It was the only time in his life that i got a call from school. I would consider removing it. We dealt with Lucas's hyperness with school interventions. As he got older, he turned into a couch potato. At times, I long for his hyper You can't fix every annoying symptom with medications. Wish ya could! LUcas no longer acts hyperactive, but he gets up early. I just let it go. It's either his own body chemistry or maybe it's an Autism Spectrum Disorders (ASD) thang. If it were my kid, I'd stop looking for that magic pill. And this from a mom who had my son on almost every medication imaginable until I realized that they don't help him. And some make him worse. Stims DO NOT HELP all Autism Spectrum Disorders (ASD) kids. Neither do antidepressants. I was told Autism Spectrum Disorders (ASD) kids are sensitive to medications. Intervention helped Lucas so much more. He actually had to learn to calm down himself. And he did learn. JMO :smile:
  14. DammitJanet

    DammitJanet Well-Known Member

    Topamax does help with anxiety but I have no idea what dose you ever tried with it. You do have to titrate up on it very slowly. Most people go up too fast and dont give it time.
  15. totoro

    totoro Mom? What's a GFG?

    Personally I like Topamax for myself... I also like it in combo with Zoloft for myself... But I think I need something else or to go a bit higher. I am at 200mg right now and I still get a bit manic and and anxious breakthroughs at times. Zoloft I am at 100mg. I went very slow with these... but I am 100% BiPolar (BP)...

    Ativan... for K was Horrible. psychiatrist we were using as a PRN. For anxiety, mania, any out of control behavior... it seemed to push her over the edge??? It increased her mania for some reason? psychiatrist of course didn't get it. Clonidine for us helps calm her better, a very low dose, 1/2 tab. just cuts the edge.

    But K is also diagnosis'd with serious combo type ADHD... she can not sit through a movie, she moves non-stop, she twitches, she talks, she pops joints, she makes sounds, she grunts, she is always doing something.
    Even in her sleep... It is kind of funny I don't really think about at times, it is just her. Even in the car, she is taking her clothes off... I think I worry more about getting her mind stable than making her sit still... or getting her to stop talking.
    At this point. But yes it is hard at times... We have baskets all over the house of "hand works" things for her to squeeze, lace, take apart etc... foot things to roll back and forth... because obviously the medications aint doing it!!!
    We haven't attempted a stimulant yet.
    With the racing thoughts and the incontrolable movements I don't know what is ADHD at times Or BiPolar (BP)!!! You Know???

    I feel for you Janna...
    We are at 75mg of Topamax right now... not seeing much yet...
    I hope Dylan can calm his little engine soon for all of your sake!!!!
  16. oceans

    oceans New Member

    I don't know Janna. I have read that some kids diagnosed with severe ADD are actually experiencing hypo mania and mixed states. It is even more suspicious that the ADD medications do not work, but the Lithium did for awhile. I would wonder given the situation if a different mood stabilizer might make a big difference. Tegretol is one that is not associated with weight gain.
  17. smallworld

    smallworld Moderator

    To add to what Oceans has said: "How common is it that a child diagnosed with one of the Pervasive Developmental Disorders is found to have a comorbid bipolar disorder? While there has been no formal study, Edwin H. Cook, MD, Professor of Psychiatry and Pediatrics at the Department of Psychiatry at the University of Chicago, feels that 'based on my experience, my best guess is that 10 percent of the children with autistic spectrum disorder have a bipolar comorbidity' . . . this may eventually turn out to be higher (more in the 35 percent range)" (The Bipolar Child, page 50).

    I do think it's something you may need to consider, Janna.
  18. Sara PA

    Sara PA New Member

    I'm going to second what Oceans said. How about Tegretol?

    First neurologist I saw tried to change me from Dilantin to Tegretol in a one shot dose for dose switch. That didn't work. When the Tegretol kicked in the first day, I collapsed on the sofa and I literally didn't move for hours. I refused to take the Tegretol again. A few years later another neurologist made the change gradually replacing the Dilantin with the Tegretol over a couple of months. No extreme sleepiness. There was no more weight gain on the Tegretol than I had had with the Dilantin (3-5 pounds). Tegretol does required blood tests. In the long run, there was some cognitive dulling but nothing dramatic and I could have probably been on a lower dose.

    In your shoes, I'd give the Tegretol a try with the caveat that he start it very low and increase it very slowly and, of course, stopping at the dose that controls the symptoms even if it's lower than the original target dose.
  19. ML

    ML Guest

    I think re-visiting some of the ones you tried in different combination or dosing might be a thought.

    My son's hyperactivity can go off the charts too. I have seen improvement since he's been on a mini dose of Celexa but the atttention issues seem worse.

    Thinking calm, balanced and serene thoughts as I think of you and Dylan. Hugs,

  20. tammyjh

    tammyjh New Member

    We've tried quite a few medications. and have revisited some too. Most medications produced no desireable results. Lets see...

    Zoloft...very bad reaction to this one. It made her moods much much worse.

    Adderall...we've tried this one twice. It did help her focus but she would hyperfocus on one thing all day long. This wore off after about 2 weeks and then didn't work at all, even with tweaking.



    Risperdal...first two months were great and then like the Adderall, nothing, even with tweaking. Retried this one twice more with no results other than weight gain.

    Abilify....nothing much with this one and we tried it a couple of times.


    Depakote...nauseous and sick to her stomach


    Thats all I can think of for now.

    She's currently on Prozac which she'll be weaning off soon as husband and I think it makes her mood swings more erratic and severe. psychiatrist wants me to research Tegretol and Lithium and make a choice. Last time we were in her office, she said that maybe medications were not the answer for difficult child. But she was irritated because we said "no" to trying Risperdal again and when going down the list of medications, I would say "tried that". I think she thinks I'm difficult :thumbsdown: