My 6 year old was recently diagnosed with ADHD and began medication. The doctor recommended that we start him on Jornay PM given its nighttime administration and unique release kinetics. After ~ 2 weeks and having titrated up the initial starting dose, we haven't seen much of an impact. In fact, it feels like the we've seen as many side effects (appetite/weight loss, moodiness, etc.) as we have seen benefits (decreased impulsiveness).
Curious regarding others experience with this and other medications - how long does it take to determine if we are on the right path or need to switch to a different medication? Really appreciate your feedback.
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DFWDad
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Welcome to the group, we are glad you have joined us on this journey. When to start and how much is really based on each child and how they react to medication.
Our son is 16 years old and tells us he can not even tell if he takes medication.or not. For us and it sounds like you, we see the difference daily.whrn he takes the proper dose.
We were told we eould know it is the right dose, type and timing when 60% of unwanted behaviors are gone. For us the impulsive behaviors go away when he is on his medication. We also do not see any negative side effects (other than him having to take medication and us paying for and refilling them). We have also trusted the doctors to make the right dose based on his symptoms.
We have also used therapy, tons of exercise and a 504 educstional plan to all help him become successful in school.
Since you are new to the list I recommend you searching the previous messages to answer any burning questions you have.
This journey is like a roller coaster with twists and turns.
Hi there! I have 2 ADHD kiddos (7 yo boy, 9 yo girl) + a non ADHD kiddo. As far as I can tell, the right med shows itself as being right pretty quickly. They do all come with significant side effects, even the non stimulants. But, if it's right, I think you'd notice. Mine have been on methylphenidate ER (Ritalin CD ER) (never been on the super long acting one you mentioned), dexmethylphenidate (Focalin) , Vyvanse, Adderall XR, and guanfacine. So we have tended up changing meds frequently based on response. I wouldn't be afraid to say to the doctor that it isn't working, if you feel that way. It seems like a long trial and error process to me! It's especially hard with younger kiddos because their powers of self reflection and self analysis aren't amazing yet. Hope that helps. Hang in there and you can always send a dm on here, too. - Fellow Dad 👍
Sonde it’s been two weeks, tell your doc what you are experiencing and tell them you think this is not the right med. we haven’t tried this one. We are on Ritalin and getting tics. We went off for summer though.
Hello! We went with our gut feeling and continued in the search. You can always go back to that medication if it seems like it was working better than subsequent medications that you try.
My son has never taken the medication your child was prescribed so I can’t speak to that. However, my 8 year old is taking Concerta ER and Guanfacine 24 hr. Our experience has been that stimulants show their effectiveness pretty immediately but do come with side effects that, for my son, go away after about a month. Guanfacine took a bit longer to see the effects and also came with side effects for approximately the first month. Currently my son has almost no side effects at all and I can see the Concerta work 30 minutes after he takes it. I can also tell when it has worn off at the end of the day but the “crash” is much more mild and manageable than it was before he was on guanfacine. Hope this helps and good luck! Finding the right medication/dosage/combination can take months but when it’s right you’ll know. I just think with the typical side effects, you have to give it a bit of time to get over the hump.
Hey! I talk from my own childhood journey. Much similar to what a few have mentioned below, it is strange to say. But you'll know.
Things will just click into place. Okay, there maybe a few side effects to start with, but these ease. I always remember (still do struggle) with appetite and this is something which continues with me. But this was easily juggled to resolve. I.e. taking meds just before breakfast etc. Having meal drinks on hand just in case, which was sold to me as a milkshake ha.
Also, it is worth noting not all meds work for everyone. So I'm on Concerta, this may not work for OnTheMoves Son (sorry to use your name, just for example and not saying it is the case). I take 2x concert spread across the day, which maybe different to someone else.
The annoying thing is, there is not a simple answer. It is about weighing things up. To me, at the moment it doesn't seem that the medication is necessarily working the best. As definitely there should be more pros!
Again, as I said at the start, in someway follow your heart. You know the child best and can see the changes. If you personally feel it isn't working the best, you are probably right!
We were told to expect a 30% improvement by 6 weeks, which is specific to the treatment choice. We got there in 2 weeks, and had side effects to manage for a few months with a dose change also. It's easier to "hang in there" when there is an obvious positive.
If we were starting right now, it would not be a fair reflection of moodiness, because school has also started which is very stressful for mine. Appetite can take time to recover, and as we were already on protein shakes before treatment, I went the calorie route. Whatever mine would eat that had the most calories in the smallest portion is what I kept offering.
Sometimes you can't tell a medication has been making a difference until it's missed, but I'll elaborate more on that in a bit.Speaking very generally, because all meds and all people are at least a little bit different from one another, stimulants can have more immediately evident effects and nonstimulants can take a while to build up first.
Some meds should be taken routinely to maintain their effectiveness (especially nonstimulants) and some can be used more 'as needed' (many stimulants).
If you're trying a stimulant and it doesn't have an effect of any kind on the same day, and you've tried it at least a few days so you can account for other factors that affect behavior, it's reasonable to doubt that the dose or the drug is right. For my then-5-year-old son with ADHD and ODD, we tried short-acting methylphenidate (Ritalin, a stimulant) first. 5mg, nothing. 10mg, nothing. 20 mg, BOOM, evident and desirable change in behavior! But the side effects weren't worth it, so when he was old enough for other meds, we ditched Ritalin.
Adderall was effective but its side effects and rebound were even worse than Ritalin's had been.
Guanfacine was good for a while, especially to help him get to sleep, but we think it was increasing his irritability, so we switched out eventually.
Now he's 7 years old and on Strattera, at 40mg per morning, and hydroxyzine at 10-20mg per evening. Strattera seems to help with some of the hyperactivity and emotional disregulation. Hydroxyzine helps him get to sleep and reduces his morning irritability. It's for anxiety and insomnia.
It's very evident when we miss doses. If we forget his hydroxyzine he will stay awake for two hours past lights out; if we forget Strattera he's uncomfortably hyperactive, more compulsive than usual and hair-trigger irritable.
These meds at their doses are working alright; I think it might be possible to get even better results but for the moment there's too much else going on to actively experiment. NOTHING killed the "chronic boredom" symptom like Ritalin, though. On Ritalin he'd actually play with the many toys and activities we have provided for him, and he was able to focus on and enjoy creative endeavors, too. Now it's 16/7 simulation-seeking and if we're too busy or exhausted to provide we're punished with horrible mood or vindictive behavior. I miss Ritalin, but it made eating and sleeping too hard.
Anyway, see if what you're trying is effective by (safely!, responsibly!) offboarding from it. Behaviors the medication was diminishing will return in full force and be evident if it was an effective med. If nothing changes you have good reason to experiment with something else.
This is, of course, only going to work if you've been trying your current med long enough for it to have taken effect.
We tried other meds initially and when we discovered JornayPM 2 yrs ago it was a game changer! My son now 12, would be a total pain in the am before school and we’d get his Vyvanse in him but it didn’t kick in til he was at probably 30-40 min at school. So hed have a rough go getting settled. When he started JornayPM he’d wake up amazing! Ready to tackle the day! He is now on 80mg. I do have to give him a booster in the afternoon. Unfortunately there is no generic and our insurance has just stopped covering it. His Dr has called in a prior authorization but it’s now costing us $75 a month. Well with it!
Hi! My son has been on Jornay p.m. for at least a year now. We find that it works very well for him. However, he has these nightly rebound periods where his ADHD symptoms are magnified to a great degree. I’m curious about the afternoon booster you mentioned. Can you tell me what that is? By the way my son is on the highest dose of Jornay pm - 100 mg - but he is a large kid for his age. I wonder if the booster could help with my son’s nightly rebound period. His psych nurse hasn’t provided that as an option, but I can mention it to him.
Is your child at the dose your doctor was working towards? For Jornay? I would give it a couple of weeks at that goal dose. However, if you are truly seeing no real benefit, it might be worth trying something like a simple, straightforward short acing, immediate release methylphenidate (Eg generic Ritalin ). Jornay is the same general type of medication but a newer long acting special preparation. If your child clearly gets no benefit from a few weeks of immediate release methylphenidate, you can possibly cross that off the list for now and then try a different stimulant. At least, that’s probably what I would do. I would want to eliminate different stimulant classes first before moving to non stimulants, personally, because they’re typically more effective as single medications for ADHD. However, for each person, it’s a trial and error process (sigh). I hope this helps a little. Definitely get your doctor’s opinion because he/she may have a sense about your child’s tolerance already after seeing your insights and experiences you share at your next appointment.
Hi I can relate to what you are described. Our 9 old son was diagnosed last year and stated on methylphenidate. It is a different formula than the one your son is taking but is the same active component. We saw a similar pattern to what you are describing. Indeed, the moodiness was so strong that was almost unbearable. We started seeing tantrums as we had never seen on him. We were ready to change him to another medication. As I started looking for options I came accross a clinical trial report done on methylphenidate. I work in the medical field and do cancer research, so I dived in and read all the details. That clinical trial reported that the majority of kids on methylphenidate reduced their emotional instability if they are on magnesium and vit D. I kept reading on it. Soon thereafter we temporarily stopped methylphenidate just to have time to add the supplements in one by one. Based on research we also added methylfolate and Vit B12. I have never been a fan of supplements but I must say these changed our life. At school the teachers reported a tremendous improvement as well. Please feel free to reach out to me if you want to talk more about these.
To clarify we added in the methylphenidate as soon as we made sure the supplements were not causing any side effects. No more tantrums from methylphenidate. Not to say all is perfect, but he is back to his own self. We still have struggles, so now we are trying to do parent training.
Days. You would know within days if it is working.
Our psychiatrist has always told us to call him on day 4 or 5 if we either didn’t see a difference or if my child was having dark thoughts.
As an earlier poster mentioned, you can always go back to the current medication after trying others. Comparison can really tease out what works best —- though I know the process can be frustrating. It’s worth it in the long run. I’ve been through this with two kids who are now college age.
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