Our ADHD Medication Success Story

I have hesitated in writing this post for a month now. Mostly because I am attempting to be more guarded in what I share about our kids on this blog. But I feel that the possibility that confused, overwhelmed, and scared parents (and their children) could be helped by Ezra’s story necessitates that this be shared.

If you are unfamiliar with our son’s story and his diagnoses, you can read about it in a lot of detail here: {Ezra’s Story}.

The short version is that our 5-year-old has been diagnosed with adjustment disorder, ADHD, and definite sensory processing differences.

When he was first diagnosed by an inpatient behavioral therapy team (which included a developmental behavioral pediatrician) in October of 2014 (at age 4), they recommended we speak directly with the DBP about medication management. Ezra started inpatient behavioral therapy and occupational therapy while we waited for our appointment. In December, the DBP laid out all of our options for us. We told him we were going to wait because neither of us felt comfortable with medication management. I have heard many Ritalin “horror stories” over the years and Russ was probably even more anxious about the possibility than I was. We also felt like we needed to give the therapy he was undergoing a longer chance to work to see if that could stand-alone as an option for him.

The winter wore on and with changes in schedules (read: snow days), the progress he seemed to be making was up and down. Some days were fabulous. Other days were absolutely awful, and our home life was where we were seeing the least improvement. Throughout treatment, our case manager continued to gently bring up medication management as a very good option for Ezra. In February of 2015, we decided to start him on a non-stimulant option (Tenex, short-release Guanfacine).

I kept detailed logs of how it was affecting him, including his wake times, times he was having emotional fits, and how he did in therapy. If it helped at all, it was incredibly hard to tell. We tried different dosages and several different times of administration, and nothing seemed to make it better. It also wreaked severe havoc on his sleep (see also: How to keep sane when your child won’t sleep). Not only did he continue waking early (as had been his norm since toddlerhood with an average wake time of 5:30 AM), he had days where he woke even earlier (like 3:30AM…for the day), or in the middle of the night (for weeks on end). One time I heard him playing at 1:30AM, and he was up and completely dressed in clothes for school. He would stay awake often for 2-3 hours in the middle of the night.

We decided to wean him off of it at the end of the school year (mid-June). By this point, he had been discharged from inpatient therapy and was attending full-day preschool. The reports from school were decent-ish (definitely better than before therapy), but home life with him was still very difficult at times. I was close to being ready to start him on something else then, but I held back yet again.

I knew we were about to enter a very tumultuous time for him (transitioning from school to summer camp to time at home with a very-pregnant me, then back to school then new baby). I felt that, whether helpful or harmful, it would be hard to judge the efficacy of medication management with so many other factors at play. I told the doctor that I wanted to wait until the fall before revisiting the issue.

Once fall came, he seemed to be doing very well in school. While the summer was definitely trying, we got through it. We had also continued with weekly occupational therapy and started family play therapy. But after Little Brother came, Ezra continued to struggle a lot at home. The act of going through his activities of daily living (ADL) (grooming, eating, getting in and out of the car in the morning) was just a fight that never seemed to end. We would have to repeat instructions over and over, threaten discipline, then follow through with discipline – from the time he woke up until the time he went to bed. We were EXHAUSTED and overwhelmed. (Not to mention, caring for a newborn – who was by far the easy child in the home.)

Once I was pretty-well recovered from surgery and through the immediate postpartum period, I turned my focus on getting Ezra more help. We requested an additional occupational therapy day for him (which kicks in next week). I felt unsure of our options because Ezra still lacked an official “sensory processing disorder” diagnosis. His play therapist and OTs believed that sensory processing problems were definitely a big deal for Ezra. However, his play therapist mentioned that because SPD and ADHD both have to do with differences in the brain stem, often children with SPD respond well to ADHD medications.

I decided to seek a secondary medical opinion through our pediatricians office. His ped referred us to a psychiatrist that works at our peds office twice a week.

After reviewing Ezra’s extensive history (including OT reports, his behavioral plan from inpatient therapy, and IEP evaluations and progress reports), he gave us the exact same treatment plan as had the DBP we had seen: medication management.

Now, we were MORE than ready to proceed.

I told the psychiatrist I wanted stimulant meds that could last Ezra the entire day to get him both through waking up at o-dark-insanity til bedtime. He prescribed us Quillivant XR (liquid extended-release Methylphenidate, the most common ADHD medication, well known as Ritalin). This was supposed to last him 10-12 hours.

We noticed an improvement the very first day. By the third day, Ezra asked me (unprompted), “Mom, can I have my calming medicine?” At one week, again unprompted, Ezra told me, “My medicine makes me feel better.”

We did have to tweak the dosage because it was only lasting him about 7-8 hours. Now we are giving him a low dose twice a day, and it is working like a dream.

adhd medication success

It helps him focus.

This is the purpose of this medication and WOW does it live up to its reputation. He can hone in on projects, ADL tasks, eating, and playing in ways he NEVER has been able to up to this point.

It helps him access what he has been taught.

Like, for instance, MANNERS. While his mean speech is still a factor, he has improved SO much. He’s saying, “May I please…” and “Thank you” and kind things, unprompted, without having to be reminded at all! He is also learning to read, tell time, and understand his place in the world (such as how where we are in the day or week fits into the daily or weekly schedule, days of the week, months of the year, etc.)

It helps him be more curious and think more deeply.

While some of this may be attributed to his maturity and age (age 5 is a game-changer), he is asking deeper questions. He’s talking to us about God and absorbing the things he has learned in church. He’s also telling long, drawn-out imaginative stories with intricate detail that are riveting and fascinating.

It helps him eat.

Appetite loss is one of the biggest side-effects of stimulant medication, but we have seen the opposite. Whether it’s a true appetite increase or just an issue of focus, he’s eating so much better than he has in the past. The other night, I put his plate in front of him and instead of us saying, “Ezra, please eat. Ezra, take another bite. Ezra, sit down and eat. Ezra, if you don’t eat, xyz is gonna happen. Ezra, do we need to set a timer? etc. etc. etc.” for a long-exhausting HOUR, he simply sat there and ate. Ate everything on his plate. Asked for seconds. We didn’t tell him even ONCE to eat.

It helps him be patient and less frustrated.

Because of his delay in fine motor skills, Ezra gets VERY frustrated, VERY quickly with anything that he has to do with his hands. Zippers and buttons on his clothes, fine-motor related play, putting caps on markers, etc. Now, I find that I am holding my breath due to hypervigilance, expecting an outburst when he’s doing these things, but instead he works at it for a few minutes and either figures it out, or asks kindly for help. He has new shoes that have laces, and the other day in the car he sat in the backseat for several minutes just practicing tying knots in the laces.

It helps him recover from outbursts.

The outbursts are still there, don’t get me wrong. He still gets frustrated and mad and aggressive, but he comes down off of his little fits within just a few seconds, maybe a minute or two, instead of having a longer, more drawn-out ordeal.

It helps him be compliant.

I tell him to get dressed, he gets dressed. I tell him to get in the car, he gets in the car. No, not every time. But more than usual. Sometimes, he will even do what he’s supposed to do without being told. I can say things like, “You can watch these videos on my phone until the big hand gets to the six, then you have to give me the phone,” and he will get upset when I take the phone instead of giving him the chance to hand it to me. Or “You can play until the big hand hits the 12, then you have to get in bed,” and when it hits 8PM, he gets in bed without a fit. (True story, both of these incidents happened tonight.)

IT HELPS HIM SLEEP.

Let me say that again.

IT HELPS HIM SLEEP!!!!!!!

No really. 5:24 AM is the earliest he has woken up in the last month. While there have been a few nights he’s gone to bed later (8:30-9:00 PM), we are having to WAKE HIM UP at 6:15 AM every morning.

6:15 AM

If you have followed my blog for pretty much any length of time, or been connected with me on Facebook, you will know that this is the boy who has struggled with sleep since birth. He did not sleep through the night until he was 19 months old, and since toddlerhood he has been waking up between 4:30 and 6 nearly every morning.

Having a child that I have to actually wake up in the morning is still jaw-dropping success to me. I have no words.

Also, on the weekends, he sleeps even later. Saturday night was a later evening for bed (we went to a parade so he fell asleep about 9:45 PM), but he slept until 8:30 AM.

8:30 AM

He hasn’t done that since he was an infant.

Here are a few of my recent status updates:

This boy has had SUCH an amazing day so far. We cleaned the basement together, we only had to tell him once to get dressed, we went to the children’s museum, straight from there to Panera, straight from there to therapy. Only 2 or 3 angry outbursts, helpful and sweet attitude, ate all his lunch with very little prompting, transitioned smoothly between the different activities, and remained fairly calm. We SOOO needed a day like this!!!
{Thanksgiving Day} Ezra had a really good day. Just a few challenges at the dinner table but after some help and a brief break, he ate good portions. He played well with his cousins, decorated a gingerbread house (SAY WHAAAAAA???), played outside, practiced fishing with grandpa, transitioned to the car without a fit, and eased through the evening routines without too many issues…all on NO NAP and a wake time of 5:24AM. WOWZA! So proud of my little man! ‪#‎THANKFUL‬ <—-I don’t care if you think that’s an overused hashtag…
Ezra has been so sweet, compliant, calm, mannerly, and responsible this morning!! Not even one outburst all morning! I normally hate Sunday mornings but this one was one for the history books (even if we are still late for church).

Ezra just spent nearly an hour working on this picture of our family. This was his idea. The detail is intricate. All of the colors coordinate to the clothes we are wearing today, and [Little Brother] is in Daddy’s arms. (This all after almost 2 hours of focused independent play outside.)

adhd meds 2


I could go on and on, but this is what I’m really wanting to say:

Putting Ezra on stimulant meds is one of the best decisions we have ever made.

Everyone who has direct interaction with Ezra on a regular basis has noticed a difference. Every. Single. One. His daddy, his grandparents, his teachers, his church workers, even my sister-in-law who only sees him a few times a year.

The three biggest side affects are appetite suppression, sleep disturbances, and tic. The first two are not issues. He has developed some excessive blinking eye tics, but they are very slight and don’t seem to bother him that much.

Selfishly, (narcissistically), I’m glad we waited a year. Because I can tell all the naysayers, the sanctimommies, and the people who don’t believe in modern medicine that we tried just about everything else before taking this route, that we waited a long time, and blah blah blah blah blah.

But for Ezra’s sake and our family unit’s sake, I wish we had done this a year ago.

Is it perfect? No. He is still going to struggle because these things don’t just go away with meds and therapy. I also know that efficacy can change with growth phases and adjustments may need to be made in the future. But the improvement is undeniable.

A month ago I was struggling to be around him because the fight was just so constant that I was miserable.

Today, I feel like I have my son back.

So, to anyone out there reading who is on the fence about medicating your child with ADHD or SPD, let me say this.

They (your Facebook friends, the people who write sensational blog posts, Dr. Google, your extended family members who just don’t get it, etc) are going to tell you that French kids don’t have ADHD. That ADHD is a made-up disorder. That your kid just needs a firmer hand and needs to know that you are the parent. That kids back in their day were just strong-willed. That the only reason kids these days are being diagnosed with ADHD and SPD is that they aren’t getting enough exercise and playtime. That if you were only more consistent, everything would be better. That you need to spend hundreds of dollars on essential oils, supplements, or other alternative approaches. That you need to disrupt your budget and your meal planning by trying the Feingold Diet, the GAPS diet, or going gluten free. That giving your kids meds is like giving them speed and is going to turn them into drug addicts.

In my not-so-humble and quite-emotionally-charged opinion, they don’t know crap. They don’t have a medical degree. They aren’t a pediatrician or a psychiatrist.

A parent in a SPD/ADHD Facebook group I’m apart of said this about meds:

[paraphrase] “Would you deny someone with diabetes access to insulin? No. It’s the same thing with ADHD meds. Meds can help the medical problem in the brain.”

Another parent said, “ADHD meds are like glasses for your brain.”

One of the many things that Little Brother’s birth taught me is that the medical community might just know a thing or two about, you know, medical conditions. Because they are doctors who devote years of their lives to intense study and practicum. And they want to help.

So if your doctor suggests ADHD meds for your child, my advice is to try it.

You may have to try a couple of different meds. You may have to adjust dosages and times and play with it. There will still be days where everything goes to crap and you wonder if you’ve made a mistake.

But it might just change your child’s life.

19 Comments

  1. Sharon

    What a great success story! Thank you for sharing it. Our son is now 25 & has been on ADHD meds for 17 years & has not progressed to other drugs so that debunks that myth. I love that you tried alternatives & that there are more people now to help parents through this process. I think we as parents need to be supportive of each other! Just because something works for one child, doesn’t mean it will always work for another. So glad o hear that things have improved for Ezra & your family!

    • So glad to hear that about your adult child. It gives me hope! (Especially about the whole “it will turn him into a drug addict” comments that I see elsewhere online.)

  2. Thank you for this story. My son is three and I know I am going to have to seek help. At school, he is more manageable due to the routine and the other kids. However, there are still issues at school. At home, we are in a constant battle. One of our biggest issues is with sleep. He goes to bed late even if I start at seven, or eight, and even with a strict routine. He will sleep for a few hours and then is up for the day, until about six am, and then he wants to sleep again. Being a single working mother, his sleep schedule does not make for an easy night or day. Fighting him to sleep is a battle that drives me to tears most middle of the nights. I plan on getting a doctor’s opinion on ways to help Jack. My family is not supportive saying he needs more discipline, but as his mother, I know it is more.
    Thank you for sharing your story.

    • When your child doesn’t sleep, it can really do a number on your sanity as well as the entire household (not to mention how it actually affects the child. I sincerely hope that you can get some help and answers soon!! We have fought the sleep battle for his entire life and I know how exhausting it can be! Hang in there!!!

  3. Kelly

    Thank you for speaking out about your experiences with ADHD meds. Our own family has become much more outspoken about them as well because they changed our lives. It’s astonishing how much bad publicity and clearly wrong information is out there.

    BTW, it’s my understanding that unmedicated ADHD is MORE LIKELY to lead to substance abuse than medicated ADHD. I am going to let you google that one, but then you can let the “sanctimommies” have it if you need to call on Dr. Google yourself. (Love that term–sanctimommies.)

    • I’ve been hearing that too.

      Glad I’m not the only one speaking out, either. It’s definitely not perfect, and since publication we have hit some bumps. But he is still sleeping better than ever, so at least there’s that!

  4. Sarah

    Thank you so much for sharing your story!! Our son is 5 and we had struggled for 2yrs about meds and we trust his dr so much we finally did this same Med almost a year ago and it has made a world of difference! Our son is only on 3ml twice a day. We are very nervous about kindergarten cause we were giving him 5ml but he was seeming too zombie like so we backed it down, he also was so focused that he wouldn’t stop what he was doing to use the bathroom. Your story just helps because I have felt so ashamed and like I have to defend myself as a mother as to why my son is on an ADHD Med. He can sit and eat, play, listen to what’s being said, learn! But when he doesn’t have the Med he is uncontrollable!! To wear he could hurt himself. I mostly have to defend myself when it comes to my older sister, she told me that if I need parenting classes because we don’t know how to parent and we think we need to put our kid on meds then we need to ask for help, mind you she has no kids and my son is 5 1/2 and she hasn’t watched him since he was 10months old or been around him more then an hour which is like once every few months and she leaves down the road!

    • Sarah, I am glad that you also have found success with the meds. As your son grows, you may find the dosage or medication needs tweaking. We are now giving him Concerta (methylphenidate XR) in the morning and the plain Ritalin in the afternoon and at dinner. It seems like with every growth spurt we have to make adjustments, but it is still so apparent how much it helps him. WHAT A DIFFERENCE between this summer at home on medication and the last two without it.

      Parenting classes and behavioral therapy are also incredible tools for both the child and the parents, so don’t rule that out just because your sister is ignorant. We have found that the combination of therapy and medication has been the most helpful.

  5. Thank you so much for sharing!! My son is 8 and has ADHD, SPD, and anxiety. We have tried just about every alternative therapy I know of with no real progress. Today we decided (with his doctors) to give medication a try. They prescribed him Ritalin (5 mg twice a day), and I have been so worried. All yu hear are the horror stories of this medication. It is nice to read a positive one for once!

    • It takes some experimenting. Sometimes I think just when you hit that “sweet spot” of efficacy, the kiddo grows and changes and you have to adjust again. We may need to tweak our son’s again, but we are still with methylphenidate. He’s struggling with concerta 18mg in the morning but his 12:00PM and 4:00PM 5mg ritalin work wonders. Give it time and don’t be afraid to try different things. It truly is a game-changer – at least it has been for us over the last 3 years!!

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