vyvanse experiance

Discussion in 'General Parenting' started by kim75062, Apr 24, 2017.

  1. kim75062

    kim75062 Active Member

    as most of you know my little guy has issues with stimulants and seems to metabolize them faster then they can safely be given.

    The doctor thinks that vyvanse may work better for him then the others because of the long duration of the effects. And positive results from his sister taking the same medication for a few years.

    His sister (now 14) started vyvanse when she was 9-10 after many failed attempts at other stimulants also. She is not impulsive and all over the place physically like her brother, she gets lost in her own head A LOT. She did not get the anger/tantrum side effects of the other stimulants like her brother but she became VERY depressed and had suicidal thoughts at that young age while on ritialan, adderal and concerta? (I think) not at the same time obviously but 3 separate failed attempts to help the problem.

    I took her off of it over the summer last year (same as every summer) and kept her off of it through out this school year to see if she no longer needed it. Her grades were ok the first half of the year but have been up and down since January and she is struggling to focus on anything. She has managed to pass her classes and has some very good grades in a few subjects but the struggle she is going through to achieve it just not fair to her so she was started back on it also.

    My one concern is that my little guy may have bipolar (his dad does) and his sister does not.

    if anyone has any personal experience I would love to hear it :)
  2. JRC

    JRC Active Member

    Hi Kim-

    This is the list of drugs and potential risk/reward that she laid our for our son (bipolar and ADHD). We currently don't have him on anything at the moment as we try to re-stabilize him after a failed stimulant trial (made him hypomanic/mixed state). We are very likely going to try Memantine this summer. Good luck.

    -guanfacine or clonidine (alpha-2-agonists) LOW RISK, LOW REWARD
    -strattera MEDIUM RISK, LOW REWARD
    -different stimulant (metadate, dexedrine spangles) HIGH RISK, HIGH REWARD
    -vortioxetine (aka Brintellix, new antidepressant which in testing for FDA approval for ADHD) HIGH RISK, MEDIUM REWARD
    -modafinil (aka Provigil, can be cognitively enhancing) LOW-MEDIUM RISK, MEDIUM REWARD
    -memantine (aka Namenda used for Alzheimer’s but can emerging evidence for attention) LOW RISK, POTENTIAL HIGH REWARD ACROSS MOOD, ANXIETY AND COGNITION
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  3. JRC

    JRC Active Member

    Sorry, "she" is our psychiatrist.
  4. ksm

    ksm Well-Known Member

    Ask the prescribing physician if they ever do DNA testing to help decide what medications to try. Also check with your insurance domoany to make sure it is a covered expense.

    Google "DNA testing for medication" and it will explain how it works.


    Ps, my daughters biomom was bipolar...and most antidepressants did not work for my daughter...
  5. kim75062

    kim75062 Active Member

    I looked in the the DNA testing more in the last few weeks. My INS will not cover it (im not shocked as they wont cover most of the medications anyway).

    Theres 2 companies Ive looked at that seem to have been around a while. The first one is almost $900 for the psy medication testing but only requires a few cheek swabs. so expersive but easy for most parents to do.

    The second one is about the same price but is testing for more drugs. They want blood (cant blame them seems better then spit to me and I can draw it myself) and the shipping of blood is a ridiculous task if no one has ever delt with it before.

    I shipped my dogs blood from NY to CA for a genetic test and FedEx acted like I was mailing the plague lol
  6. kim75062

    kim75062 Active Member

    I've been reading up on namenda, it seems in the clinical studies it wasn't very effective on its own in treating children with ADHD but had very good effects when paired with a stimulant.
    My concern is that mine has HORRIBLE side effects on stimulants. I know the vyvanse is also a stimulant but its on of the few left that he hasn't tried.

    I also wonder if taking this at such a young age will have a positive outcome as far as the disease its intended to prevent goes. Alzheimer's runs in the family and supposedly the sooner you start treatment with these medications the better. But is 6 years old to soon? We know that the brain chemical glutamate is responsible for angering the NMDA receptors in the brain that leads to dementia. But what happens when we mess that before theres a problem? This is just some thought s that run through my head about these drugs, truthfully there is SO much that is unknown about the brain and how it works/develop that most medications scare the crap out of me to give him.
  7. Copabanana

    Copabanana Well-Known Member

    I am going to say something here that may seem off the wall. First, a disclaimer. Of course school performance and academic achievement are important. But they are not everything. These schools want the kids to conform *and so do we. Of course that makes sense. But there is also the concept of thriving, of discovering and nourishing talents, and passions, too. And finding adaptive and constructive and self-initiated ways to modulate our emotions, and to direct our behavior and attention.

    ADD and ADHD can be adaptive too. These kids are our dreamers, our inventors, our explorers. That may be one reason that the USA has such a high incidence in the population. We are a nation of dreamers, inventors, explorers, movers and shakers.

    Does your daughter (and son too) have interest in sports, art, music, animals, nature, spirituality, etc. that can cultivate and focus interest and energy in such a way that she/ne will grow themselves?

    Believe me, I am not downing psychiatric medications. Only trying to look at the whole child, whole person.
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  8. kim75062

    kim75062 Active Member

    My daughter is the text book example of ADD. She can not keep focus on anything, even things she enjoys are hard for her to keep focus on. Things less enjoyable like math, science etc. are impossible for her as her grades have shown. We tried for years with her to help her in other ways learn to deal with the ADD and retain focus. All failed attempts. For her, vyvanse has been the best thing. She can focus on her school work to retain the information.

    That also effect goes into her everyday life. She can remember that she is going to x friends house and what to bring/what they are going to be doing. Her self confidence dramatically improves because of the medication. In her own words, it lifts the fog that's always in her head and she can finally understand what's going on around her instead of standing there waiting for direction.

    As for my son, he's a different story completely. I was against ANY anti psychotic/controlled medications because he was still a baby in my eyes. Also being a nurse I KNOW the bad effects these drugs can have and someone has to be that 1% that has Horrible side effects etc. (when he was on intuniv I obsessively checked his blood pressure (not bipolar as the site changes it to lol) every 20 mins to make sure it wasn't dropping.)

    What changed my mind was stepping back and actually watching him suffer. It was a struggle for him to even deal with himself! He hated that he couldn't keep himself in his seat or in the classroom at all. He cried because he really wanted to go to art but his brain wouldn't let his body stay there. He was starting to have major self hatred for the way he was acting and he couldn't control himself.

    The abilify did work to an extent; his mood was more stable but after a few months he was having brain fog and didn't like the way it made him feel.

    The stimulants also have worked, kinda. After 30 mins of taking one you can see the calm come over him, he's no longer climbing the walls and fighting himself to stay still where he wanted to be anyway. He can focus on doing what it is he wants to do. Wether that's reading a book or lining up dominos to make the longest line of them ever. Unfourtnatly we have learned he is a fast metabolizer and the effects only lasted 2 hours at the most and he was back to climbing the walls and paronoid, angry and violenence was the added side effects/coming down effects for him.

    I am not against a medication that can help them be the best versions of them possible as long as it's safe. With so many of these medications the risks are greater then the benifits.

    It's also heartbreaking to hear your 5 or 6 year old crying because they just want to be "normal". So that makes it that much harder to determine what the risks are your willing to take for them.
  9. JRC

    JRC Active Member

    Kim I read that same study on the memantine and stimulant use. Although she hasn't published anything yet on it's use in her research, our psychiatrist believes that it will still help even without the stimulant.

    That said, her practice has been criticized in the past for using medications off label for bipolar disorder treatment. One of those drugs was lamictal--which is now a standard drug for treatment. So, on the one hand, that's how they make treatment progress. On the other...no one wants to experiment on *their* kid. Including me.

    All of these drugs give me tremendous pause. I'm right there with you.
  10. Copabanana

    Copabanana Well-Known Member

    Gosh, Kim, your kids are lucky to have you. You sound so "present" with them. Not rendered traumatized and immobilized by their pain and struggle. Just right there with them.

    I see you holding out for the best course for your son, in all respects. This is a tough, tough place to be...when the "best" option does not seem apparent. Yet from this person's perspective (me) you sound continually open, evaluating, and assimilating his options. I know you must feel discouraged sometimes. But nobody could be doing better, as far as I see it.
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  11. kim75062

    kim75062 Active Member

    I'm all for off label use when there's supporting evidence that it may possibly help. But feel the same when it comes to my own kids.

    I know the hoops pharm companies go through to get stuff approved is unreal but they are still my kids so I will admit to being byasist and remain skeptical
  12. Copabanana

    Copabanana Well-Known Member

    I read a warning about genetic testing for psychiatric medications. I am very interested, but there is anecdotal evidence that it can backfire. Well. Everything can. There is strong financial incentive to market this approach. I guess the watch word is caution.
  13. kim75062

    kim75062 Active Member

    Yes all things can. it has proven to be very helpful though. You still need a good doctor with lots of experience with these types of medications and kids. I look at it as an additional tool to help narrow down which medication to try. In the end it all still comes down to trial and error. Hopefully they get better at these tests and we will have a lot less error and more positive outcomes sooner
  14. ForeverSpring

    ForeverSpring Well-Known Member

    Adults I know who had the test (I did not) like it and found it helpful. And I know one woman who is in my old therapy class who was told that her DNA showed that no medication will be good for her. Very sad. She has had intractable depression forever, as the test verified no medications helped her and she had a few rounds of electro shock therapy that gave her PTSD.

    I like that there is a test even if not everyone will benefit from it. I am also very grateful to my medication. Since six weeks after starting it until today i am a normal person. I am myself without drpression. Before the medication I had to fight not to feel like killing myself. This medication saved my life.

    Kids are different in my opinion. I think, since they can not really explain if they feel a bad side effect, doctors need to be more careful. I knew one kid who was on 15 pills a day. in my opinion thats ridiculous. An adult can object. A child has to take what he is given, even if it screws him or her up. Some doctors are way too pill happy with kids.
  15. kim75062

    kim75062 Active Member

    The INS company refuses to pay for it for either child. They sent out the generic denial form stating they must try formulary medications first and listed off like 6 of them. Most of which the youngest has been on and failed (they wouldn't know that though as they also refused to pay for those ones too). My daughter failed 3 others before finding vyvanse 5 years ago. They could are less that's she been on it for so long with no problems. The bottom line is it cost to much :grrr:.
  16. susiestar

    susiestar Roll With It

    There are ways to go and prove that they have trialed those medications, have failed on them due to side effects/lack of effects, and then insurance pretty much MUST pay for the medications. It is a process of you and your doctor challenging them over and over, but it can be worth it. My sis in law is an insurance agent who sells health insurance and actually reads the policies and now helps regulate our state health insurance boards and she says you often can win if you jump through the hoops and don't give up. You have to read the fine print. It is often on the back of the EOB or the claim form or rejection notice.

    There was a Grisham novel about an insurance co who just denied everything because it was cheaper to do that because many people won't resubmit or challenge to see if it was a correct denial. What MOST people don't know is that this happens way more often than people want to admit. I don't know that it is a policy with any ins company, but I have known a LOT of people who worked in claims processing for health ins companies. Every single one of them quietly told me to challenge every single denial even if I thought it was proper. They stressed to challenge every single denial no matter what.

    I have done this. I have succeeded MANY times when I thought it was hopeless. Sometimes when I should have succeeded, I didn't. But I have always felt it was worthwhile to NEVER accept the first no, and often to not accept the second one.

    Find out what the procedure is for resubmitting a claim, and for challenging a denial. Then get good at paperwork. Make cookies or send flowers or whatever for the nurses at your doctor's office, so they like you and will help. Keep them on your side. Trust me, it always helps. So few patients show true appreciation and even the smallest gesture can get those who know the paperwork to truly help you. My neurologist just told me the real difference between getting my migraine treatment approved is not what they write in my chart, it is what code they put down in what order. So being nice to the person who learned what order makes the company happy this week? Is well worth my time.
  17. susiestar

    susiestar Roll With It

    Have you tried this?


    EVERY time you take a brand name medication, google the medication and go to the website. Look for a savings offer and sign up. You can save a huge amount of money, often making the prescription the same or less than your copay for a generic. I have used these for years. If you have problems, call the toll free number on the website or printout and ask for their help. They are usually helpful. I have done this with medications of almost every sort that you can even think of, for myself and for my kids.
  18. susiestar

    susiestar Roll With It

    I will also say that the main reason we kept my son on medications was that he liked himself more on medications. He didn't always like himself, but he liked himself more. He has been on the same medications for over a decade now, and they work. I was shocked to realize it, but he never once fought us about his medications. Never cheeked them, or spit them out, or flat out refused them. He even would call from school if we forgot in the morning.

    I do think that it is very important to keep an open and honest discussion about medications going from the time the child starts taking them. My oldest son was in second grade. My youngest son was actually 2 when he had to take asthma medication and we started discussing his medication. I discussed what would happen if they took drugs that someone else gave them, even at a very young age. I kept it age appropriate, but I was honest.

    My oldest son says that having me tell him what each of his medications was supposed to do, and listen to him when he said that he felt something was off or wrong in his body, was largely what made him stick with his medications and stay away from illegal drugs. He has seen a few friends get messed up on drugs and he thinks that they are the most evil plague the world has seen. A direct quote.
  19. kim75062

    kim75062 Active Member

    Thanks Susie. I have filled an appeal again, so has the docs office. Waiting for that denial and then file for a review from the medical director.

    It's ridiculous that it takes months fighting for them to pay for a drug. (They never did pay for the abilify which was $700 a month for the generic) I'm all for saving on healthcare costs and trying lower priced alternatives first but this company takes it to far. There denial literally stated "prove its medically nessasary" seriously isn't the doctor writing a script enough "proff" it's nessacary . And then to say try ALL these others first. Half of them have the same active ingredient that has already failed.....in not a pharmacist but they are and should just know better. This particular medication is the ONLY one of its kind that doesn't get converted to the active ingrediant until it hits the red cells and is proven to work better on fast metabolizes like my son.

    for this particular medication the only coupon/assistance will cover the first $50 of your co-pay. If your getting it without ins (because they won't pay) it won't even cover that. And it's a capsul with the tiny slow release beads so splitting a larger dose to save $$ is a bad idea. The cheapest I found it was $285.