when ADHD meds suddenly fail

There’s no disappointment quite like the squashed hopes of watching your child’s medication suddenly fail. The knot in the pit of your stomach when you can see it coming the second, third, fourth time it happens. Each time you become better at predicting it, but it somehow delivers a stronger punch, a bigger kick in the teeth, to your emotions, your energy level, your psyche. Sure, there are worse things in this world — I’m not suggesting this is the worst blow a mom may face — but there isn’t anything quite like seeing your child finally successful and happy, and then watch helplessly as they fall right back to the tight hold of struggling in nearly an instant.
I used to think Luke was the lone ADHD kid who took stimulants only for them to be miraculous for a month or two and then completely fail. The first doctor we were seeing for his ADHD told me, “this may be as good as it gets,” the day I told him the Concerta 36mg was now failing after being such a bright spot, just as the 18 mg dose had done two months before. But how could the barely-making-a-difference treatment level be “as good as it gets” when we had experienced a seemingly miraculous change in his behavior, energy level, impulsivity, even handwriting and learning?  How could he tell me that mediocre treatment was all we could hope for when we’d had a taste of greatness?!
I hadn’t been happy with treatment at this facility pretty much from the first appointment. As soon as we got the kids switched over to insurance that covered mental health, we switched medical practices for Luke’s ADHD treatment. Of course, the 36 mg of Concerta wasn’t working anymore, even with the Tenex added to try to give it a “boost.” I asked our new doctor the same question, “Why does this stimulant give super-great results for a couple months and then fail? Is he metabolizing it too fast? Should I give it independent of breakfast? Or maybe after breakfast instead of before? Is there anything I can do differently to make it effective again?” He didn’t know why either. But, at least he didn’t tell me I had to settle for mediocre treatment. He had us try other medications.
Over a year later, after having tried almost every other stimulant with no success (and some scary episodes), Luke is back on Concerta at 54 mg. The doctor started to add some medications for anxiety this fall too. I was hopeful they’d keep the Concerta from failing again, and maybe even allow us to reduce the Concerta dosage, but no such luck so far. The first one caused some mildly psychotic episodes and the worst behavior he’s had in quite some time. The other, as it turns out, rendered the Concerta ineffective — just the opposite of our goal. {sigh}
So we’re back to 54 mg of Concerta, which had been working very well for Luke so far this school year, and we just added Straterra in the hopes that it will boost the Concerta, help with anxiety, and allow us to eventually lower the stimulant dosage (which will allow Luke to gain some weight). If not Straterra, we’ll try some other medications like Wellbutrin or maybe a tricyclic. It’s all trial and error.
In connecting with so many of you here and on our Facebook page, I have realized that my child isn’t the only one taking a beating in this vicious cycle of failing stimulants. I am not the only mom who’s hopes get lifted, then trampled. Why isn’t the medical community looking into this to find answers if it’s something many ADHDers struggle with? I have searched high and low for information on this and found no answers.
Why do stimulant medications work for a short period of time and then fail for some people? Is it tolerance? Is it high metabolism? Is it added stress or anxiety? Maybe excitement and anticipation? Maybe a change in diet (although I ruled this one out for Luke)? Could it mean that ADHD isn’t the right diagnosis at all?
I’m a woman that needs answers! I want to prevent this crushing blow from repeatedly nailing me with such predictable force. Why can’t we prevent this disappointment for our ADHD children, and for ourselves? I’m not good with helpless.

COVER3D_400sq_bestsellAward-Winning Blogger. Freelance Writer. Author. Warrior Mom.
A self-described “veteran” parent of a son with ADHD, Penny Williams is the author of the Amazon best-seller about her parenthood in the trenches, Boy Without Instructions: Surviving the Learning Curve of Parenting a Child with ADHD. She is also the creator of the award-winning website, {a mom’s view of ADHD}, a frequent contributor on parenting a child with ADHD for ADDitude Magazine and other parenting and special needs publications, and co-founder of the annual Happy Mama Conference & Retreat, a weekend away for moms of kids with neurobehavioral disorders. Look for her second book, What to Expect When You’re Not Expecting ADHD, in late 2014. Follow Penny at http://BoyWithoutInstructions.com.

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ADHD medication, feature, NEWLY DIAGNOSED, parenting/FAMILY, Penny Williams, treatment ·

About the author

COVER3D_400sq_bestsellAward-Winning Blogger. Freelance Writer. Author. Warrior Mom. A self-described “veteran” parent of a son with ADHD, Penny Williams is the author of the Amazon best-seller about her parenthood in the trenches, Boy Without Instructions: Surviving the Learning Curve of Parenting a Child with ADHD. She is also the creator of the award-winning website, {a mom's view of ADHD}, a frequent contributor on parenting a child with ADHD for ADDitude Magazine and other parenting and special needs publications, and co-founder of the annual Happy Mama Conference & Retreat, a weekend away for moms of kids with neurobehavioral disorders. Look for her second book, What to Expect When You’re Not Expecting ADHD, in late 2014. Follow Penny at http://BoyWithoutInstructions.com.

18 Comments

  1. stephanie balkema says:

    I too struggled with ADHD with my son. I am certainly no stranger to having hopes smashed. Now we found a liquid vitamin that actually works. No side effects…it's wonderful. He still has good days and bad days…but soooo many more good days. The best part is that he is happy and healthy. I couldn't ask for more! http://www.castofsix@yahoo.com

    Reply
  2. Anonymous says:

    We tried 5 different medications for my son and were disappointed in all of them. He is now unmedicated and doing well in school. He is eating again and is significantly happier. He hated the meds. I would love to see some posts from parents who choose not to medicate; believe me that decision is not easy. I second guess myself everytime he has a bad day.

    Reply
  3. Anonymous says:

    After my daughter's doctor changed the dosage on her ritalin, she quickly spun out of control for a number of months. We tried a few different medicines, before settling on one that wasn't perfect but that was an improvement to what we had been experiencing (adderol plus tenex). BUT we also added in a pediatric behavioral therapist who worked with her on specific behavior and relationship issues. It's made a world of difference. Remember, it's not all about the meds. It's about controlling and managing impulses, learned behaviors and negative coping mechanisms. Good luck.

    Reply
  4. Anonymous says:

    I have also experienced this with my son. My son was diagnosed late last year (kindergarten). We went through 3 medications before we found the “right one”. It seemed to work well and then boom- it stopped. We just started a new medication over the weekend and all I can do is hope he adjusts to the medication and hope has a good day at school. They tell me that as the child grows hte medication is less effective. It doesn't give much hope and can be overwhelming as the parent.

    Reply
  5. Connor's Mom says:

    Ah, that wonderful 'medication roller-coaster'! Searching for just the right combination of uppers and downers. I know that sounds like such druggie talk, but that's what it feels like when it comes to the meds. Right now we're trying adding some Adderall back in with the Intuniv my son's currently on because it alone isn't cutting it in school. My son is so good about taking whatever I put in front of him. He trusts me to make the right decisions for him when it comes to this stuff, and every time we try something different I can only cross my fingers and hope I've chosen the one with the “Golden Ticket”. Yep–some days I feel just like Charlie, searching every Wonka Bar hoping to find just the right thing which will bring my son a life of ease. . .

    Reply
  6. @stephanie balkema
    It's great that you've found something that works so well for you son!

    Reply
  7. @Anonymous

    I second guess myself everyday for making the decision to medicate. I wish my son could get by in school without it but he can't yet. I do believe in the “yet” still and I plan to start trying summers without it to see how it goes.

    I am not opposed to having a mom voice on this website who's ADHD child does not take conventional medication for the disorder. It just so happens that all the ADHD Mom writers I knew of all have children that can't make it through without medication. If you'd like to write a guest post about your day-to-day without medication, I'd be glad to publish it.

    THanks for participating on the site.

    Reply
  8. @Anonymous

    I didn't mention it here in this particular essay, but my son does see a therapist to work on behavioral modification. He also sees an OT (off and on now, although he went consistently weekly for over a year). You are so right! It takes a lot more work and effort to help our ADHD children than just medication. My son is still pretty immature for managing impulses and compensating for symptoms of ADHD, but we are working on it nonetheless!

    Reply
  9. @Anonymous
    Good luck with the new medication! I hope you find success with it. Isn't it just maddening to get a glimpse of your child's potential and then have it suddenly disappear?! Let us know how the new medication is going.

    Reply
  10. @Connor's Mom

    Yes! You know exactly how I feel. Golden Ticket, Magic Bullet, whatever, we're all searching for the same {impossible} way to “fix” our attention-different children. If you find the Golden Ticket, we'd all like to know! 🙂

    Reply
  11. Mistyk says:

    I have been reading this posts and feel this need to just cry–I can't seem to find anything in our town with other parent's of children of ad/hd and how hard it is to wade the the internet searching for what other people have tried and what works for them and what doesn't. When I read your stories I feel relieved that there are other children who have the same behaviors as my son. He was diagnosed with Ad/hd and anxiety but yet am constantly second guessed by the guidance counselor at school about him maybe having Asperger's. He has been tested for it, but she is just so certain that my son doesn't represent or seem like her other Ad/hd kids..but yet when I read these posts, he seems pretty fitting of his diagnosis. Sorry to go on, I am just exhausted and constantly looking for new ideas.

    Reply
  12. D says:

    I felt my stomach knot up just reading the email teaser. The stimulant roller coaster is NO fun! The dips drag families down. I can only imagine what it's like inside the child's mind.

    Anyone know who's doing ADHD meds research? I'd send some charity dollars their way.

    Reply
  13. nadine says:

    The medication roller coaster is a nightmare. Penny you sum it up so well.

    “….but there isn't anything quite like seeing your child finally successful and happy, and then watch helplessly as they fall right back to the tight hold of struggling in nearly an instant”

    I find this one of the hardest things to cope with with my ADHDer.

    He started on Straterra in July. 18mg daily was his initial dose. And we were told that it would take between 6-8 weeks to really take effect which timing wise worked out perfect for his return to school after the summer break and the start of Junior school.

    The first 5 weeks were superb for my Lil Man. He came home happy every day and was regularly praised by his class teacher, deputy head and the head teacher who have had many dealings with my Lil Man. And was even getting “Good Notes” sent home regularly – A visual instant reward that my boy was responding well to. We were flying high on this successful period! Even managing to get him to do homework without a fight and to read to us, which was a huge achievement. Then all of a sudden and without warning came the nose dive of the medication wear off! And we were back to the school ringing to collect him, exclusions and dangerous behaviour at home resulting in the fire brigade having to visit us at home and install yet more fire alarms throughout the house etc.
    Equasym XL was even worse for my son with some particularly bad violent episodes and suicidal thoughts.
    I wish I had a magic wand for these kids as life for them must be so very tough and I know that my Lil Man would give anything to just be “Normal” like everyone else. Its the only wish I am unable to grant!

    Reply
  14. Fiona says:

    I believe that every family knows their own child best and makes the correct decision for the individual child. But in response to @Anonymous above, we are going the non-medication path, and currently on the rollercoaster of the SCHOOL repeatedly pressuring us to medicate (noting, that in our son's case symptoms are fairly mild and that we would probably make different decisions if, for example, his behaviour becomes more unmanageable.)

    In the end though, all of us are in the same boat: we all just want answers and want to help our kids, and there seems to be no definitive advice out there. I've really appreciative that you are sharing your experiences Penny, as it is often down to us parents to try to find answers on our own. Thinking of you and hoping some answers for your situation are forthcoming soon.

    Reply
  15. As Javi gets older, it's becoming more difficult to manage the anxiety that comes with his ADHD. Right now he takes a low dose of Vyvanse, but we're headed back to the therapist to deal with anxiety that seems to be growing out of control. If it's not one thing, it's another.

    But! We aren't helpless, we just can't solve the problem. We can make a difference in the problem, and we do that every time we fight for answers and go to battle for our kids. You do a great job of that, Penny.

    Reply
  16. CMRies says:

    Hi there, we're on 72 mg of Concerta…the 54 started failing a few weeks ago…my 10 year old daughter…had “outgrown” the last dosage according to her doctor. I hear it gets ugly when puberty starts…can't wait…bracing self now…

    Reply
  17. CMRies says:

    Oh, and we're on 50 mg of Zoloft for the Anxiety…that hasn't changed in dosage…

    Reply
  18. RaisingJames says:

    So glad to have come across this post. I have an 8 year old son with ADHD and have similar issues with meds working great for a few months and then stop. He now takes 36 mg of Concerta with 5 mg of Ritalin to jump start the Concerta. At first his ADHD was being managed by his pediatrician but it became such a hassle to talk to the pediatrician when I needed to so I found a child psychiatrist. We tried Focalin for a few days but he was zombie and said his eyes felt sloppy so I stopped that and went back on the Concerta. Now we are once again at the point where the current dose does not work but the psychiatrist says he isn't changing his medication. I don't know what to do. Sometimes I just want to cry. I have a call into the psychiatrist again to talk about possible med changes. It is also very hard for me to take advice on how to raise him from someone who has never experienced what it is like to raise a child with ADHD. To be told that I should expect him to do what I ask him to do the first time and actually have that happen is unrealistic! I want him to grow up happy!

    Reply

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The "ADHD Mommas" are not medical or mental health professionals, nor an ADHD coach. Any opinions shared here are just that, opinions. I, and the other "ADHD Mommas," are sharing our experiences with our own ADHD children. Please do not re-post or publish any content or photos without a link back to {a mom's view of ADHD}. Have the courtesy to give credit where credit is due. Copyright protected. All rights reserved.

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