5 Year Old Boy With ADHD: Hello... - CHADD's ADHD Pare...

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5 Year Old Boy With ADHD

Daisy_chain_necklace profile image

Hello everyone,

I was recommended to visit this page in the hopes of not feeling so alone in my recent struggles with my son. Our son was diagnosed during pre-school, and we took him to various therapies (OT, ABA). Ultimately, his school politely asked us to unenroll him. We then found another preschool, but unfortunately, they asked us to pick him up almost every day during the first week and eventually kicked him out. I took leave from work to focus on getting him an Individualized Education Program (IEP) and managed to enroll him in a TK class at another school. At first, he was doing great, and we were excited about the progress. However, after reducing therapy hours due to the positive results, his behavior started to regress and change. The teachers noticed new behaviors on the playground and in the classroom, and we were asked to pick him up on numerous occasions.

Fast forward to this summer, we enrolled him in a few camps, all of which ended with us having to pick him up or unenroll him. Even his OT, after an incident last week, suggested we take a pause, stating that our son has plateaued and hasn't shown much change in his skills for a few months. He mentioned that this is common in the therapy process and taking breaks from intervention can promote further growth.

With kindergarten approaching, I am incredibly nervous. I have a draft email to the school asking the IEP team to meet immediately to address these issues, but I can't send it until after the first day. We've tried everything and are now considering medication—a decision we do not take lightly.

Do any of you have advice, stories to share, or words of encouragement? Thank you in advance.

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Daisy_chain_necklace profile image
Daisy_chain_necklace
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67 Replies
kdali profile image
kdali

Hi! You are not alone!

I am familiar with early pick ups, canceling camp weeks, and everything in between. When my kiddo was struggling, we had a shortened schedule until full days were appropriate. Maybe this is something you can do? If he is a young 5, school may offer delaying Kindergarten for another year. It takes time to figure out medications. If school knows you are adding this option, and they should so they can report any issues, then they may be more patient.

Once you have a med to try, you can search the posts for personal experiences and ask questions. I regret not going through the process sooner. We got lucky with the first treatment and improvements were noted early on. I'll note that this was after, and in addition to, therapies.

I still have trauma from the previous 2 years of school, and despite things being so much better now, I am anxiously awaiting the other shoe hitting me in the face 🫣

Daisy_chain_necklace profile image
Daisy_chain_necklace in reply to kdali

Thank you so much for you reply! The shortened day is something we tried, and unfortunately it gave us the same results. We also tried different methods of arriving right on time so there is no waiting/getting riled up before camp starts. It worked once, but not the rest.

We did have that thought that we might need to hold him back, definitely something to assess once school starts. Great idea on searching around here once we find a med to try and to let the teachers know!

I completely relate to the "waiting for the other shoe to hit" feeling. When you have had a long journey of trying to figure out what is going on, with teachers and people constantly calling and giving you bad news...that stuff is hard to kick. I'm happy to hear that meds worked for your little one.

I was in your shoes when our son was 4. After 18 months of OT for SPD & behavior therapy for ADHD, both of which did zero for his behavior, we saw a child psychiatrist. Started him on methylphenidate and got him titrated with her expertise to an appropriate dose. He has been managed by a child psychiatrist since for all medication choices and dose adjustments. I highly recommend this to someone whose child has this significant a behavioral issue at 4. Our son started a stimulant at 4 y 9 m. His behavior improved dramatically and our lives completely changed. I know it’s not the answer for everyone, though. Best wishes.

Hi! This is so great to hear! At this point I have his mental health/self confidence in mind more than anything. Thank you for sharing.

May I ask what changes you saw?

He could sit still, listen, not touch everything in sight, participate in circle time, stay at the table for a meal, follow 2 step commands, not have 30 minute tantrums—-it was like a miracle. I don’t mean everything is perfect, but medicine gave our son and our family a chance for the success other families take for granted. I will never regret medicating him for ADHD for 1 millisecond. He was ultimately diagnosed with autism in addition to combined type ADHD. I don’t mean at all that your child has autism or anything. And I know not everyone wants to use medication. But at least for our son, medication has been essential. He was so dysregulated, he couldn’t respond to behavior interventions without it. I know medicine is every parent’s last resort for their child. It took us 18 months to reach a desperation point (we were crying Sunday at 5 pm weekly, our weekends were so stressful.) My husband was leaving work 3+ days a week because preschool/daycare were sending him to the office. It’s an impossible way to live. And on medication, he could finally get praised for some successes, feel like he wasn’t a complete failure, and build some self esteem. Otherwise, he was failing at life 24/7. We now consider his medicine as important as glasses, food, water, etc. My opinion only and our situation only. He now takes both long acting methylphenidate and long acting guanfacine and we have had <5 behavior calls in K-6.

Thank you so much for being so open and sharing. I am thrilled at how positive the outcome has been on medication! All of that sounds amazing! My son was also diagnosed with Autism, but what was initially their concern isn't a concern anymore. What you mentioned about not sitting still, not being able to participate, tantrums, for us impulse control is a huge one...all of that is where he struggles the most.

Thank you again <3

Maggie-Shaw profile image
Maggie-Shaw in reply to kdali

Wow- yeah I have had all of those experiences at this point too. Early pickups have helped for sure and arriving when programs start seems to work as well. My son is repeating PreK with the same teachers and schedule so my hope is that, coupled with the current therapies he is getting may help build some structure.

Camp has been a nightmare, frankly, it’s his first year going and it’s an entirely new schedule, with new people, with new rules and new kids. It’s been rough.

I am having him start with a psychiatrist to see if medication might be helpful since he has such a hard time focusing, sitting still, staying on track, following through with directions, settling down at nighttime and sleeping.

kdali profile image
kdali in reply to Maggie-Shaw

Having the same teacher and routine while starting a new treatment is a wonderful plan!

Daisy_chain_necklace profile image
Daisy_chain_necklace in reply to Maggie-Shaw

Thank you for sharing! We do wonder if repeating kindergarten might be in the cards. We will see how this year progresses. Same teacher and same routine would work great for our son!

Momtrying profile image
Momtrying

I didn’t start my son on medication until he was 10, because I didn’t understand he had ADHD when he was younger, but it was the best thing I did for him. I wish I had known earlier. It is a hard process, remember that. But once you find the right one and dose, it really helps so much. We tried concerta which made him feel kind of sick and he really didn’t like it so we switched to Adderall. It was tough at first getting the dose right but he’s been on an extended release in the morning and a short acting in the afternoon. It’s worked for 4 years now, just have had to up his dose every once in a while. Good luck!

Daisy_chain_necklace profile image
Daisy_chain_necklace in reply to Momtrying

This is so reassuring! Thank you for sharing.

Trying1978 profile image
Trying1978

We ended up starting medication for my son (now going into 2nd Grade) in Kindergarten. It wasn't magic, but it helped A TON with school. Hang in there! That sounds so stressful for you; we've all been there. (I'm still there, lol!)

Daisy_chain_necklace profile image
Daisy_chain_necklace in reply to Trying1978

This message board has been amazing! I mean I hate that we are all in the same boat but I love it too ha! What medication is your son on?

Trying1978 profile image
Trying1978 in reply to Daisy_chain_necklace

Currently, he's on Vyvanse. We did Ritalin, then Vyvanse, then Focalin, now back to Vyvanse. It seems to take a while to get it right sometimes, but the Ritalin did wonders for about 7 months!

Shortcake0681 profile image
Shortcake0681

I have been on a similar journey as you. Since preschool, I knew something was different, like he had an on/off switch and could not regulate his emotions or impulses at all. After 4 preschools, we found one more inclusive that could communicate with him better. In Kindergarten, his teacher really took time to observe and report back to me. We even had the district behavior specialist come in as well. We spoke to the pediatrician (again) and filled out the Vanderbilt (parents and teacher) and every red flag imaginable was checked off. He was officially diagnosed with combined type ADHD. He started medication in Oct of Kindergarten and modified his dose until it showed results. We proceeded to implement a booster dose at school as well to help him in aftercare. This was going well until his impulsive anger would join in. He was suspended multiple times (school and aftercare) throughout the year, regardless of his diagnosis. We then started seeing a therapy office that also prescribed guanfacine to help regulate his anger. It turned out to be a blessing for him. He went into first grade and made the honor roll every quarter and the anger issues only happened seldomly in aftercare. I also want to point out that age and development definitely play a role in everything. Even a neurotypical child is still trying to regulate and socialize correctly at that age. So it doesn't help that a child with ADHD neurologically cannot control some of their impulses. That's where the medication comes in. It helps realign the brain. Then, knowing how to communicate with your little one without causing them to have an emotional explosion is the remainder. Medication solves 60%, behavior modeling and effective communication is the other part. Being able to offer choices, set limits, praise, transition/schedule updates, compromise (a big one because they like control), and staying calm when they're disregulated are all ways to diffuse a possible problem.

The part of my journey I'm currently on with him is making sure he's eating well. Kids on medication tend to lose their appetite until it wears off. He eats breakfast before the meds kick in, offer lunch (can go either way depending on what's being served), and usually has a hearty snack and then dinner. We've been monitoring the sodium, sugar, and nothing with artificial dyes. He takes Smarty Pants Omega 3 multi vitamins as well.

You've got this. It will be a journey. Look up Dr. Ross Greene. He speaks very well about all these issues, especially the explosive child.

Daisy_chain_necklace profile image
Daisy_chain_necklace in reply to Shortcake0681

Thank you so much for sharing and being so open. I am so sorry you had to go through all of that, it’s just exhausting…and heartbreaking. The impulsive anger thing, that might also be what we are dealing with so thank you for that information about guanfacin, I will ask his psychiatrist about that. And I’m looking up Dr. Ross Greene right now!

Shortcake0681 profile image
Shortcake0681 in reply to Daisy_chain_necklace

If you have Spotify, there are plenty of podcasts where they interview him. Otherwise he has books available!

kdali profile image
kdali in reply to Daisy_chain_necklace

His book is on audible if you have a commute or just prefer to listen, it's wonderful!

Mamamichl profile image
Mamamichl

My stepkid was so bad in preschool that I worked at she punched my boss in the face over nap time. In kindergarten my stepkid was “diagnosed” by the school as autistic in the iep, and since I was working in aba, I fought that. Got a neuro evaluation done with the doctors, and it came out she was adhd, anxiety and dmdd (think menopausal mood swings in a young child).

We tried to have a one on one teacher aid (like I do in the field), but it didn’t go well. From spring break first grade through fifth grade, she was put in a special ed classroom with 12 autistic boys. She didn’t go behind academically thankfully, but she did learn coping skills since she transitioned back to mainstream in fifth grade. Covid hit and she did poorly in sixth grade (no advocacy skills in child or mom). They are now going into ninth grade and doing well. They found their niche in theater, crochet and choir. Although they lack in life skills like washing dishes, I don’t worry about them when it comes to school. Oh… they started meds in 6th grade when the school noticed issues with paying attention and more anxiety.

Daisy_chain_necklace profile image
Daisy_chain_necklace in reply to Mamamichl

Thank you for sharing and I’m so sorry to read how difficult this has been. I’ve never heard of dmdd, I’m very curious about that in our situation. It’s wonderful to hear she has found such wonderful outlets in school!

Mamamichl profile image
Mamamichl in reply to Daisy_chain_necklace

I was thinking oppositional defiance disorder originally, but it’s a bit different with similar symptoms. People tend to know ODD better. My stepkid would blow up and have fight response to their anxiety and mild situations (pull a card in school). Just advocate constantly and talk with doctors/counselors and look into meds. Many people are afraid of meds, but after finally being diagnosed at 38 and trying meds, I can see how it can really help. Imagine going without glasses with bad eye sight. It’s like that with adhd, except it’s usually too much stimulation and not being able to focus on certain ones. It also helps me not brood on the negative or flip my lid.

poppysage profile image
poppysage

Hello friend, I am so sorry you have to go through this. My son is five years old and struggled with behavior in preschool and kindergarten. In May of this year, we started him on 10mg of extended release methylphenidate and we haven't looked back. He is his best self, behavior wise and we use the medicine every day, school days and not. It might feel really hard to accept but I believe that medication can work wonders for these kids and allow them to have a more normal childhood experience.

Daisy_chain_necklace profile image
Daisy_chain_necklace in reply to poppysage

You are so right! I so want my son to have more of a normal childhood, I worry so much about that. May I ask what the medication helped with? What positive changes did you see?

poppysage profile image
poppysage in reply to Daisy_chain_necklace

Of course! We saw immediate improvement in his impulsivity, aggressive behavior, motor overactivity, ability to focus on a task, ability to sit through a meal without spinning around the room or climbing on the table. His teacher reported similar improvements, along with his new ability to make friends and be respectful of others' personal space and boundaries.

Daisy_chain_necklace profile image
Daisy_chain_necklace in reply to poppysage

Oh my gosh! This is just amazing to read. If all those things improved with my son things would be so different! Thank you

poppysage profile image
poppysage in reply to Daisy_chain_necklace

It's totally awesome, I feel like so much stress has lifted. I was scared of giving meds to him at first, so scared it would change his personality, worried he'd get the message there was something wrong with him, worried about others' judgments, etc. The first week, he actually asked for his medicine in the morning. He feels more in control of himself now and I think this gives him confidence. In May, he told his teacher that he's taking medicine to help him with his impulsivity. He's really proud of it, doesn't see it as a negative thing. My husband and I are now able to bring him out to places now that we couldn't before because he was so volatile: the YMCA, grandparents' houses, grocery shopping, summer camp, playdates at the park, ice cream shop, bouncy house gym, the climbing gym. It's a profound relief. I hope you are able to find a solution that gives you your life back. It is SO HARD to deal with this. Please remember you're not alone. 💗

Daisy_chain_necklace profile image
Daisy_chain_necklace in reply to poppysage

Oh gosh, thank you. Thank you so much for this! I truly appreciate your openness! I love hearing how proud your son is about taking something that makes him feel in control, that is huge! And makes me smile. I've never heard anything around the kids point of view on things so, thank you for that. 💗

Daisy_chain_necklace profile image
Daisy_chain_necklace in reply to poppysage

Id love to know your personal opinion on if you think starting meds before school starts is beneficial? Or wait so teachers can see baseline and can help report back? Does that even matter?

poppysage profile image
poppysage in reply to Daisy_chain_necklace

Sure thing! Our pediatrician advised us to first try pediatric behavioral therapy for a year (began in preschool and continued throughout most of kindergarten) as well as school based plans and counseling at school before trying medication. Both helped in small ways but life at school and at home was still unbearable for my husband and I, and his teacher. In our situation, his kindergarten teacher had struggled through eight months of his baseline and two months medicated and was able to see dramatic changes in his behavior. That was really valuable for our family. My husband was opposed to getting him diagnosed and onto medication for a long time. He was finally tentatively willing to try meds, with the plan of abandoning the whole thing if it didn't work. The improvements we saw at home and the feedback from school was enough to convince him that we found the correct diagnosis and that medication was the right course of action.

In my personal opinion, I think it would be reasonable and compassionate to try meds whenever you feel ready, regardless of if he's in school or not. His difficulty in preschools and camps could easily serve as a baseline in my opinion. But ultimately, this is a choice that you should make with guidance from his therapists and pediatrician. ♥️

Daisy_chain_necklace profile image
Daisy_chain_necklace in reply to poppysage

Oh gosh thank you for sharing and being so wonderful in your advice and opinions! You are right, I think that preschools, camp, Judo, playgrounds are baseline enough. We are ready for us all to feel better, and Ive now come around to being hopeful and excited at the idea of my son being able to thrive and to be his amazing self! Another thing to note is now my son is just very aware of his behavior, he says things like "I cant control myself" .. this just breaks my heart.

We just got off the phone with the doctor and we are starting him on 2.5mg of Focalin. Fingers Crossed <3

poppysage profile image
poppysage in reply to Daisy_chain_necklace

Oh that is wonderful news! I'm really happy for you and your son. Medication can be a gift for him and a relief for you. I'm always happy to commiserate and offer solidarity (and encouragement ) so keep us posted on this thread or message me!

MyWanderfulBoy profile image
MyWanderfulBoy

My son was also asked to leave a preschool, although not politely and seen as a liability. It’s painful to experience as the parent so my heart goes out to you. We lucked out in a TK class at a great preschool and he did better while receiving behavioral therapy but when he went to 1st grade, we put him on medication at 6 and it’s helped a lot. He couldn’t get through any work on his own without it. We’d even tried Neurofeedback and I feel that just bought us time until he turned 6 and his pediatrician would prescribe meds. He’s currently up to 15mg of extended release Adderall and increasing every few months if necessary. I was so scared for him to take medication but I now see what a necessary tool it is for him to have a normal childhood and school experience. Keep us updated!

Daisy_chain_necklace profile image
Daisy_chain_necklace in reply to MyWanderfulBoy

Thank you so much for sharing. It is so painful and heartbreaking! I was also getting so mentally run down with teachers constantly giving me bad news and negative feedback. I mean I ended up having to tell them to not tell me at pick up in front of my son. He hears everything! I am thrilled to hear things are working out and I will for sure keep everyone updated. I’m sure I’ll have more to ask! Haha

Knitting20projects profile image
Knitting20projects

PS I also praise(d) every little thing he did/does right that I want him to keep doing. Even stuff you would think is really dumb to praise a 12 year old for. I have ADHD, as I discovered recently. It truly feels like you’re trying to live the same life as other people but walking backwards on an increasingly faster treadmill. And someone else is controlling the speed. So I try hard to be kind and compassionate to him. Not easy sometimes!!!!!!

MyWanderfulBoy profile image
MyWanderfulBoy

It really is so draining. I remember the nightly 7pm emails from his teacher when he was at the preschool that kept working with him. It was just an awful feeling of dread every night to read what really happened that day. Feel free to message me anytime.. wishing you the best of luck going into the new school year :)

Daisy_chain_necklace profile image
Daisy_chain_necklace in reply to MyWanderfulBoy

So draining, so overwhelming. Thank you for your support!

eva2022 profile image
eva2022

Hi!

I would sound like I’m echoing what everyone else says on here with our experiences without son with ADHD/autism so I will just add two quick things:

1. Kids do well IF THEY CAN. No kid wants to be the one in trouble or hearing angry voices all the time.

2. ‘Straight Talk about Psychiatric Medications for Kids’ (book) helped me understand the cost/benefit for using medication to help my child manage his own executive functioning. We have a LOT of data now about using medicine to help children manage ADHD. In short, it helps.

Good luck! Keep posting on here. You see many people continuing to post and it does start to feel like a community!

Daisy_chain_necklace profile image
Daisy_chain_necklace in reply to eva2022

Thank you for being so honest and for your thoughts. I will for sure keep everyone updated! I will definitely be back to ask for more advice. What an incredible community!!

Me again! I’ve been reading about Guanfacine. There is another side of my son, besides his ADHD, where he gets very quick to anger and a lot of the reason why he is sent home recently is because he is randomly hitting kids.

Anyone here have any insight into Guanfacine? Success stories? Things to keep in mind? We have a meeting with our sons psychiatrist on Monday but wanted to ask in here too!

Thank you in advanced!

Bookworm365 profile image
Bookworm365 in reply to Daisy_chain_necklace

Guanfacine did not have the intended effect we had hoped for our son. He was really tired all of the time, wasn’t sleeping well (nightmares) and was pretty much a zoned out, cranky zombie. That being said, a LOT of parents in this forum have seen terrific results with their children.

Our son is 6yo with diagnosed ADHD and we too know the picking-up-early from camp and school blues. It is rough. He has a really low frustration tolerance, can be very rigid in his thinking about how others should behave (but tends to not apply the same rules to himself) and becomes easily agitated, often physical. We have seen progress with a super low dose of Vyvanse and Abilify, which can be used with children on or suspected to be on the spectrum to reduce agitation and thereby help smooth out some social interaction issues. Like you, we’re working toward a good medication regimen with a psychiatrist. Hope your appt today went well!

Crazyboymomma profile image
Crazyboymomma

Guanfacine didn’t make a huge difference for my son, but I’ve seen tons of posts on here from people whose children had great reactions to it. Zoloft was actually pretty wonderful for my son’s emotional outbursts (he takes it in addition to his adhd med). Some people are still anti-med, which I totally understand, so I guess it’s still slightly controversial. However, I am very much in the pro-med camp. I think there are some kids out there (perhaps those that have just a slightly inattentive version) that can get by without it, in fact I know some. But for my son, and it sounds like yours as well, I think medication makes a difference between having a normal life/childhood, or not. I’ve always felt that not medicating my child (again not all kids, but mine specifically) would be putting him at a huge disadvantage. Good luck, I know how hard it is. 🙏

Daisy_chain_necklace profile image
Daisy_chain_necklace in reply to Crazyboymomma

Thank you for sharing!

Cyclone10 profile image
Cyclone10

I’m a little bit late but jumping in to add something that I don’t see mentioned enough. My husband and I were really hesitant to try meds with our son, mostly concerned about addiction later in life and were convinced we just needed to find the right thing that would make the difference- no meds needed. I did a complete 180 this summer on my views once we got really desperate and I really dug in and researched stimulants.

As it turns out, kids who take stimulants, and particularly those who start them at a young age have better outcomes than those who don’t. While on meds the young kids with are learning that there are ways to manage ADHD and have the soundness of mind to apply other strategies that will help them as well. Some (not all of course) kids who don’t get this jumpstart in life may turn to drugs and alcohol to self medicate in their teen/adult years because they never really found healthy ways to cope. Research has found that kids being treated with stimulants are not any more likely to abuse drugs and alcohol than other kids. This was a major wake up call to us to get our 7 year old help and find the right medication. It’s a journey for sure and everyone has to make this decision for themselves but we aren’t looking back. Best of luck!

Daisy_chain_necklace profile image
Daisy_chain_necklace in reply to Cyclone10

Thank you for hopping in and sharing. You brought up some great points! I hadn’t thought of meds that way. We have a call today with my son’s psychiatrist to talk about med options and what to start with. I do wonder if we should start meds before he starts school or a few weeks into school. I guess the only reason would be to have the teacher help report back on how he is doing. Seeing the baseline. But I dont want him to start off on the wrong foot either…

Crazyboymomma profile image
Crazyboymomma

I would definitely start before school begins!! That way he can start off on the right foot, AND you will have some time at home to monitor him for any side effects and to see if you’re noticing any differences and if you think the med needs adjusting. I think that once you SEE the meds working that is proof enough that they are NEEDED!! 👍

Fiestyfrog profile image
Fiestyfrog

My granddaughter had issues and we finally had to put her on medicine. And it has made a world of difference. She was dysfunctional before the medicine. She still has hyperactivity and some focus issues, but at least she is functional. It may take awhile to find the right combo of meds, so be patient. It helps to find an excellent doctor right off the bat.

Daisy_chain_necklace profile image
Daisy_chain_necklace in reply to Fiestyfrog

Thank you so much for sharing and Im thrilled to hear things are so much better! We are feeling hopeful about this!

Knitting20projects profile image
Knitting20projects

Re: guanfacine. Our son was initially on a stimulant only (methylphenidate). After several years, he was needing an increased dose but is very thin (not because of medication, has always been skinny). We couldn’t increase his Concerta as a result, and we were seeing some emotional dysregulation (excessive silliness, other stuff) with his ADHD that guanfacine sometimes helps. His psychiatrist added long acting guanfacine and it definitely helped. For him, though, it is not a good medicine alone. He needs methylphenidate in addition (we learned this the hard way in medication shortages). I hope this helps!

Update!

We have had our son on a low dose of Focalin (2.5mg) and we do see a very slight difference. It's almost like he is just a tad more controlled, that he is able to think a bit before acting (impulse control) and able to participate by sitting more still. He is still his active, talkative, silly, inquisitive self and still has his crazy appetite! He has, however, started to blink excessively so we will check in with the doctor about that, but I do hear ticks are common on these types of medication.

All in all, feeling positive. He started Kindergarten today and i'm really hoping this helps with him being able to socialize, and participate which will then give him confidence and a better self esteem.

We have been crushing his pill up and mixing it in with some jelly. So far this has been the best way to get all the crushed up powder without leaving anything behind, and it tastes good! In the meantime we are teaching him how to swallow pills whole with some mini M&Ms. :)

Also, I was very open with him about the medication, I didn't want to hide it from him or for him to feel ashamed. I ended up referring to his pill as his little "side kick" who will be there with him throughout the day to help him out. I used language he has used, like "You know how you say you can't control yourself?" and asked questions like "Do you ever feel like there is so much going on inside you that you feel like you might pop!" he answered "yes" to both. I also explained what mom and dads "side kicks" do! haha. Just thought i'd share what worked on our end!

Thanks all! <3

Crazyboymomma profile image
Crazyboymomma

Thats great news! Is he on the Focalin xr? It definitely helps to have the extra coverage from the extended release version of the med. It’s really crazy how kids’ metabolisms are so different! My sone is on Focalin xr and is on 25 mg! Even so, your son’s starting dosage is pretty low. (But they always start them off low) So don’t be afraid to speak with the dr about possibly raising the does. Just mentioning because you said you only noticed a slight difference. Good luck! 🙏

Daisy_chain_necklace profile image
Daisy_chain_necklace in reply to Crazyboymomma

Hi! Gosh I have been meaning to log in here to respond. Sorry it took me so long! We actually just upped his dose but he isn't on the extended release ...funny you should ask because its come to our attention around 12/1:00 his teachers say he gets a bit out of control. Which I think is around the time the medication wears off. So I think an extended release is in the near future. Thank you for your advice!

Crazyboymomma profile image
Crazyboymomma in reply to Daisy_chain_necklace

I hope upping the dose worked out! The xr is definitely the way to go! Starting in first grade my son had spelling words to study for, and in second they would get homework in packets. I can’t imagine him doing ANY of that if his meds had worn off!!

Mamatried12 profile image
Mamatried12

Hi- EXACT same boat with my 5 year old son. We are also currently on the fence about medication. I am willing to try ANYTHING, but my husband isn't convinced. We are one week into school with no news yet, but I am always scared to read the daily notes from the teacher. My son has let me know that he "had" to hit a couple people for not giving him the puzzle piece, block, etc. he wanted. It is uplifting to hear all the success stories. This is an emotional ride.

Daisy_chain_necklace profile image
Daisy_chain_necklace in reply to Mamatried12

The anxiety the day brings when you are waiting for that call from the school, man oh man i know it well. Even with my son on medication, we have some adjusting to do and he has good days and days where he is working through things. The "had to" talk sounds very familiar and to be honest, it's true, they cannot control themselves even if they want to. The impulse control is low! My son always feels terrible afterwards as i'm sure most kiddos do, they don't want to hit or act out. But, back to medication, my son seems much happier and it is not a struggle in any way to get him out the door for our walk to school—that is huge! Keep us posted on everything on your end.

Hi all! Update again!

We have since upped my sons dose on his medication(2.5mg to 5mg), which I think has helped more. Also, i'll mention again that although he had a little tick of eye blinking when starting, that has since gone away. He still has an appetite (boy does he ever) and his personality and energy is definitely still shining through. The medication seems to really help him think before he acts, impulse control seems...well...controlled. The only thing I think we may need to do is switch to an extended release. We got word from school that around 12/1:00 he starts to get out of control with his body and that there is a big difference from morning.

My son also has an IEP and a team that works closely with him on transitions and helping to listen to his emotions and body when he needs a "movement break". I think this has also been a huge help.

I'll continue to keep this thread posted on any updates. Thank you for the support!

Another update for those who are reading along. Some things we have noticed:

- After trying out different dosages to see which we feel works best, we saw that the lower dose doesn't do much and slightly more calms his body but his anxiety goes way up. Nothing seems to create a "just right" scenario.

- After tracking his mood and behavior at school, the afternoon becomes a huge problem (thats when the medication wears off).

So with these two things, we talked with our doctor and we will be switching to Quillivant. This medication is in the same class as Focalin, however, it is extended release and its in liquid form.

Stay tuned

Mamatried12 profile image
Mamatried12

we are getting ready to try the methylphenidate in the next few days. It’s a tiny dose, but eager to see the effects. His kindergarten class isn’t able to provide the support he needs. Frankly, I feel he is totally misunderstood. 🙁

Daisy_chain_necklace profile image
Daisy_chain_necklace in reply to Mamatried12

Keep us posted. I completely understand and agree that these kiddos are misunderstood. We are having them fit into this box.

MarisaP0121 profile image
MarisaP0121

Hiii !! stumbled onto your feed as your story sounds all too familiar... almost identical! We just started Focalin XR 5mg for my 6 year old a week and a half ago. Already the teachers are saying afternoons are starting to see the change (as im sure the medication is wearing off) comes back from lunch with a very dysregulated body... here we go again! Mornings are still ok though for now.

Crazy that it only lasted a week and a half. I now see how this medication journey is a marathon , not a sprint !

Daisy_chain_necklace profile image
Daisy_chain_necklace in reply to MarisaP0121

Oh wow, same journey indeed! And the medication is a marathon for sure! We are having trouble getting the Quillivant filled so things at school are the same, and actually a bit worse. uhg

MarisaP0121 profile image
MarisaP0121

ughh so sorry!! praying you get it filled soon! hang in there <3

Daisy_chain_necklace profile image
Daisy_chain_necklace in reply to MarisaP0121

Its filled! Pretty annoyed tho, because apparently its been filled but they neglected to call me to let me know! Going to pick it up today.

Knitting20projects profile image
Knitting20projects

Best wishes to you for the Quillivant XR! It was awesome for our son. Our current insurance won't cover it for our daughter--I would sure love to try it for her. Crossing my fingers it's helpful for your sweet boy.

Wonderful to her! Will be sure to update!

Update:

We are still trying to figure out dosage with this new prescription.

- Full dose brought out terrible side effects

- Cut the dosage in half for this week to then slowly increase

- Behavior is still all over the place at school. I got pulled into a room by the principle today to talk about his behavior and safety concerns.

Question: My son has an IEP, so I know there is protection there. However, is there a situation where they would be able to kick us out? If anyone knows, please share!

Thank you in advanced

Mamatried12 profile image
Mamatried12

We have increased the methylphenidate to 2ml. Teachers raving about the new behaviors. Able to stay seated, focus on work, not eloping, less yelling, hitting. All the things we hoped for! I can definitely tell a different in my son’s self esteem for getting higher color “good choice” rating🙄 , but he doesn’t know why.

From my understanding they can not kick you out from public school due to disability related behavior. At least, they would be required to provide a stipend for a more appropriate private school. I don’t have any experience with this, but certainly have also been concerned myself.

Daisy_chain_necklace profile image
Daisy_chain_necklace in reply to Mamatried12

Thats wonderful to hear! We are experiencing the same thing! He has been getting a lot more greens "good job ratings" and feeling really happy about it. We are so happy! The only thing is that we feel that his anxiety is more upped. Or maybe he is just able to express it. So something we are keeping an eye on.

I also contacted someone i've been working with for his IEP, and I asked her about expulsion. This is what she said:

In the education code, there's 5 zero tolerance behaviors that automatically result in expulsion (possessing a firearm, brandishing a knife at another person, selling a controlled substance, committing or attempting to commit a sexual assault or sexual battery, and possession of an explosive).

There is the manifestation determination process to determine if your child's behavior(s) is due to his disability or if the school failed to provide their IEP services. So, your child will be protected.

They may recommend school/program changes depending on your childs need. So it wouldn't be getting kicked out but rather seeing if there's another program that best fits their needs. If they were to go to another school/program and then made progress, they could return to their school. There's a lot of different paths that could happen.

Hope that helps!

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