October 26, 2017 at 9:38 am #66535
I tell myself that we’ve had it relatively easy, we’ve had more success with medication than some; we have a school that is supportive and a teacher that is particularly helpful. I should be grateful, but I’m tired.
I got a call last night from my son’s teacher. I know I should be thankful that this teacher took time out of his evening to call me after he knew I was off work to tell me how the new medication was working for my son. Heck, I should be happy he remembered that I told him last week that my son would be starting a new medication. Turns out the medication isn’t working that well (well maybe it’s the medication?). My normally happy-people pleaser son is having angry outbursts at school and being downright defiant. Defiance was the one area on the Conners test that he scored very low in when he was initially diagnosed. He’s too much of a people pleaser to be defiant.
I talk to my son to see if he’s feeling any different, and he reports that he is not. But adds that his favorite teacher is just annoying, his peers are annoying, school is annoying, I’m annoying for asking. Again, totally unlike him. So obviously, although he says he feels fine, his attitude has done a complete 180.
So I call his doctor to leave a message with the nurse. I research if mood changes are a side effect of Focalin. I budget in more money for medication costs since we’ll probably have to switch and I wonder how I’m going to buy groceries and medication. And then regret going to the doctor myself earlier in the week to get on a migraine preventative, because I could have used the money spent on my doctor’s appointment for my son’s likely medication change. Then I worry about how he’s going to juggle this treatment when he turns 18 and is in charge of his own medical care.
October 26, 2017 at 10:14 am #66547jlynn37Participant
You are not alone!! This post accurately describes how I feel most days. It is so difficult to determine if it’s really working or if something is a side effect or what. Like I told my son’s teacher at conferences this week, most times this “insert strategy here” works for him, but sometimes nothing works and sometimes its something else that will work. I feel like it can be such a crap shoot!
We are on our 5th stimulant medication and I do believe it makes a difference. At least more than the other 4 we have tried. Of course, the one thing about my kiddo is that he metabolizes medication very quickly which makes them less effective than they should be.
It’s a tough battle. You aren’t alone!
October 30, 2017 at 9:58 am #66786Penny WilliamsKeymaster
It is exhausting for sure. Some days I just give up and don’t try because I’m too spent. Those days aren’t frequent, but they do happen, for my own mental health.
It does sound like the Focalin is making him hypersensitive and extra irritable. Is he on the lowest dose? If not, I’d ask if you can back down a dose and see if that improves. If so, I’d say this probably isn’t the right medication for him. I know you’re in an extra tight spot due to poor insurance coverage (which I could rant about for a lifetime, but I won’t).
I can’t remember what medications you’ve tried. While Focalin is classified as a methylphenidate, it has dex added. My son does well on Concerta, but Focalin literally kept him up all night and almost manic. It was bizarre. He only took it that one day. Oddly though, he did well on pure dex, but the coverage just wasn’t long enough.
If your son hasn’t tried a straight methylphenidate (Ritalin, COncerta, Quillivant) it may be time to try that. Of course, your doctor is the ultimate adviser here, as I’m not a physician. 😉
I’ve found Dr. Dodson’s latest advice on medication fresh and insightful. You might find some new nuggets of wisdom to help in this article and webinar replay.
(The webinar is especially insightful.)
ADDitude Community Moderator, Author & Mentor on Parenting ADHD, Mom to teen w/ ADHD, LDs, and autism
October 30, 2017 at 10:43 am #66801
Spoke with the doc and he wanted to give the meds another week to see if it was just an adjustment period.
This weekend my son went on a camp out with Boy Scouts. He’s been part of the Troop for awhile now. He’s USUALLY one of the better behaved kids, albeit – talkative, but the atmosphere is perfect for him. Not this weekend. One of the Scout Masters asked me if my son changed his meds or something. He was very kind and just said my son was a “handful”. Get in the car, ask his older brother (also a Scout), and he wasn’t just a handful. After hearing the stories I’m surprised I wasn’t called to pick him up. He even went so far as to dump a cup of hot chocolate over another kid’s head. My son said the boy was “being rude”. I know this boy, he’s a good kid, he’s one of the nicer ones to my son.
Rest of the weekend, crying about everything. He likes playing XBox with his Dad. Son lost the game, crying; son couldn’t find an accessory for his Halloween costume, crying; I told him to do his homework, crying.
I know the doc said to wait a week, but seriously – OH MY LORD! At this point, I don’t care about insurance coverage, I’ll pay for the right medicine.
November 1, 2017 at 12:25 pm #66956Penny WilliamsKeymaster
Personally, I’d refuse to wait another week. I’d push. You live day in and day out with your child. You can see that something has drastially changed with the new medication. She/he has seen him for 15 minutes, if at all, since starting the new medication.
Argh! When are doctors and educators going to stop discounting parents’ input?!?!?
ADDitude Community Moderator, Author & Mentor on Parenting ADHD, Mom to teen w/ ADHD, LDs, and autism
November 2, 2017 at 9:45 pm #67078Jmccarthy04Participant
I’m sorry the new med hasn’t worked well. My 6yr old is always feisty/ somewhat defiant, but metadate and quillivant made him much much worse. You couldn’t say anything to him without him trying to take your head off verbally and sometimes physically. This was our intro to meds and I was ready to call it quits on meds period if that’s what he was going to be like on them!
Switched to vyvanse (different class) and much better. Added intuiniv before the beginning of the scull year and even better, it really smoothed things out for him. We still have our moments but overall much better.
Maybe ask about a different class of meds? Fingers crossed that he finds something that works well. Hugs
November 2, 2017 at 9:50 pm #67080Jmccarthy04Participant
Also, in terms of cost, have you asked your dr if they have any prescription savings cards for the meds?
On aetna, a month of 20mg vyvanse is $70 buy the savings card the dr gave us brought it down to $15.
November 3, 2017 at 1:17 pm #67189
We actually tried the Focalin XR because it had a co-pay assistance card. Which would have dropped the $70 co-pay to $10. However, our insurance has a name-brand penalty rule – so if there is a generic available and you pick the name brand over the generic you have to pay the price difference between the two. Our insurance also tiered EVERY extended release ADHD medication as Tier 3, regardless of whether it was a generic or name brand. There are ZERO tier 2 ADHD meds and Tier 1 is only made up of short acting meds.
So generic was $70 and we could not use the co-pay assistance card, or the name brand was $226 because of the name-brand penalty and with the co-pay card it would have been $166.00.
November 2, 2017 at 11:28 pm #67092sunshinegableParticipant
I also wonder how my daughter is going to manage her life after high school. She spends so much time working against me instead of with me, that its almost impossible to teach her anything. I just had her switched from vyvanse to concerta bc i got so many good reports that week and half she was on the concerta. She is trying to make excuses as to y she does not want to take it. The dr. Told her vyvanse would help her with not eating so much… So now she thinks thats the medicine for her. No matter what meds she is on she has that crappy attitude. She also diagnosed with ODD. So she is very hard to be around. Very hard to be nice to. Extrememly difficult to deal with each and everyday. I am tired too. I just want the chaos to stop. I want her to be open to my help and my suggestions. Im all shes got but she steady pushes me away.
November 3, 2017 at 12:12 am #67097LisaS2487Participant
I was diagnosed with ADD when I was seven. I’m 30 now.
Like everything with growing up, learning to take care of our disorder doesn’t happen overnight.
As we become more aware of ourselves, we’ll notice differences or things that aren’t right that we can speak up about. We’ll eventually complain about medication and we’ll try new ones. If you can help us learn how to look inside of ourselves and develop self-awareness, that will help a lot.
Teach us empathy and self-confidence. Help us learn to put ourselves in other people’s shoes when we’re upset so we can understand why that might act in a way that upsets us. And praise us when we do a good job because we’re so often told that we’re doing something wrong.
When we turn 16, we start driving ourselves to our doctor’s appointments. Which means we have to remember when our doctor’s appointments are. That will be tough at first. But we’ll get there.
Teach us to make our doctor’s appointments for the year all at once, otherwise we might consistently wait until we are almost or completely out of our ADD meds. Then program all of those appointments into to our Google Calendar or iCal so we get reminded the day before, the day of, and when it’s time to leave to drive to the appointment. (Consider a shared google calendar that everyone in the family can add events to so everyone can see what’s happening in each others lives)
When it comes to helping us get stuff done for ourselves and for others, I recently found a book by Gretchen Reuben called The Four Tendencies. It’s SO helpful.
Help us find what we’re passionate about so we can get excited about being productive in some area.
It will get easier for us when we start our careers. Several friends of mine found themselves able to go off of ADD medication because of the routine of an office job. When life became stressful or difficult to manage they would go back on, but it’s nice to know that, for some, they don’t always have to be medicated.
Teach us to stand up for ourselves and ask for help when we need it. At school, most teachers genuinely want to make it easier for you to do a good job.
At work, I have found that ADHD is protected enough under the Americans with Disabilities Act, to an extent, so that if your child struggles in the workforce, they can ask for reasonable accommodations.
I found a stat in a published paper that says it was the kids whose parents put them on medication who were most likely to be in a job as adults. You are helping us so much! (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3599848/)
And just a few other things I’d like to add, on behalf of all of us ADD kids.
1. Thank you so much for acknowledging we need help and then getting it for us.
2. Thank you for trying and trying and trying.
3. Thank you for making us clean out our backpacks every week (oh there’s a permission slip you need to sign!) and trying to teach us executive functioning skills. Some of that will stick.
4. Thank you for being patient, most of the time, when we lost or forgot so many things.
5. Thank you for meeting with teachers and spending extra time on homework with us.
6. Thank you for asking if we took our pills. (We need to be reminded even though it drives us crazy).
P.S. As to the Vyvanse and Concerta. I was on Concerta from 200-2016 and on Vyvanse since 2016. They are both appetite suppressants. We have to teach ourselves to eat even if we aren’t hungry, just whenever we have an appetite. If we take it consistently, overeating isn’t a problem.
Sometimes we don’t want to take the medication because we hate that we have to. We are growing up and struggling to figure out who we are. Eventually, I was able to tell myself that the ADD allowed my real personality to come out, but I struggled for a decade or so with that.
November 3, 2017 at 9:27 am #67125NicMacJParticipant
So sorry your son is going through this. I understand your struggle with finding the right medication. My son tried SEVEN over two years before we got it right. He also has very bad responses on methylphenidates. He goes in to complete panic attacks almost immediately. And when he was on Straterra, he would cry all the time over everything. It was awful.
I agree with a previous post….I wouldn’t wait to pull him off. Side effects like loss of appetite and sleeplessness are one things, but when you see absolute personality changes, that is something else entirely.
We have had great luck with Intuniv as well. It doesn’t work as well for focus as the stimulants, but my son is a much happier, emotionally even boy when he is on it. We also had him on Vyvanse, which was the only stimulant that worked for him.
I know it is frustrating, but keep trying! And you may not achieve perfection with a medication, so when something helps (even a bit) without side effects, you may find that is the best you can do.
November 6, 2017 at 10:43 am #67418
Thank you all for your suggestions, advice and support. Just a quick update, Thursday the 2nd was our “wait a week” mark. Since we had already gotten to Tuesday, I felt waiting another 48 hours was going to be hard, BUT I had trusted the doctor up until now because he always seemed to have my son’s best interests at heart.
Thursday hit, and the teacher had reported that Monday was rocky, but since then things had been steadily improving. His school runs on a demerit system. So week 1 of the new meds, my son had 13 demerits. That’s a lot. Week 2, only two demerits and 3 merits (praise for exceptionally good behavior). His home behavior is still a little iffy, the meds have definitely worn off by 4:00, but I’m giving the meds at 6:15 a.m., so I think it’s pretty realistic for it to be worn off by 4:00. Having to give it so early because the teacher said it wasn’t kicking in until close to 9:00 when I was giving it at 7:00. I am going to speak with the doctor about that.
Since his mood had stabilized, I tried Sunday to take him off the meds so that he would eat. The appetite suppression is still intense. Sunday his appetite was back, his mood was a little more stable but he was still very emotional. So I’m going to have to speak with the doc about that too. Due to his size, 62 lbs @ 11 years old, we can’t have 24/7 appetite suppression – weekends and school breaks are his major calorie intake times.
I’m thinking overall this isn’t the med for him. While he did adjust and his mood stabilized somewhat, the overall side effects are just too much.
November 7, 2017 at 8:14 pm #67634PocoPerParticipant
Pump2Duncan: I don’t have much to add past what others here have shared, but I wanted to take a moment to give you support. While I can’t speak to meds, I can completely identify with the ups and downs of what you’re describing. Sometimes it feels like an emotional roller coaster that I never bought a ticket for!
You are doing a great job at being flexible to allow for the advice and input from trusted resources. You’re watching your child and adjusting accordingly. You’re actively engaged in his life and looking for the positive. I know it’s challenging, but I see so many positives from what you’re sharing here. Please remind yourself of that when you’re at your wits end.
I also wanted to add one other thing–you mentioned early on that maybe you shouldn’t have gotten your migraine prevention medications because of the impact they may have to your budget. Please keep in mind that old adage of taking care of yourself and making sure you’re ok otherwise you cannot take care of others. You need to be whole. As a fellow migraine sufferer, there is no way you’ll be able to manage your child if your head is crushing in on itself. As they say in the plane, first put your oxygen mask on and then assist others. ;o)
I applaud you. It’s not an easy road but you are truly navigating it well!
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