Hi. My son is 7 and an half and in second grade. He is on the spectrum and has a gene deletion syndrome that causes developmental delays. I would say he’s probably working at a kindergarten level academically but socially and physically he’s on par with classmates.
At the very end of kindergarten we started Guanfacine 1mg immediate release. He was given half in the morning and half in the afternoon. This dosage seemed to help him focus a little more in the classroom for the end of kinder and relatively well in first grade. We did not get many notes about impulsive or attention seeking behavior in first (he was a little intimidated by his very direct and somewhat strict teacher). This summer we decided to switch to the extended release version of the Guanfacine 1mg hoping it would stay more level in his body all day. Only a couple months later it seemed like it was doing nothing at all for his focus and attention. It seemed almost as if he wasn’t taking anything. We changed the dose to 2mg about 5 weeks ago and we do not see much of a change. He’s getting more notes home about impulsive behaviors and attention seeking in the classroom. He’s fun loving and silly and highly motivated by laughs from peers so I am sure it is being reinforced.
His ability to attend in the classroom during whole class instruction is almost non existent. He needs constant prompts to complete any task and get extremely frustrated with homework and especially with math.
My husband and I know that the next step is likely a stimulant. His neurologist is very informative and wanted to start slow to minimize chances of side effects and allow him to mature. She explained that they are not magic pills and that they won’t suddenly make him interested in school work but I do see him encouraged and motivated when he’s attending and focused. she said when we are ready we can discuss options and start slow.
My question is, does anyone have a similar story or can anyone shed any light or give advice that can help us decide next steps? I read so much here and many times I see parents say they wish they started stimulants earlier so I’m hoping to make a decision before he falls way behind.
thanks in advance for your time. 😊
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MOMicaO
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Thanks for joining the group and sharing your son with us. Has there been a suggestion to meet with a child psychiatrist? They specialize in helping your child with medication management.
The medication journey is very individualized and long lasting becuase the body changes and grows. We were told that medications only stop 60% of unwanted behavior and that was our target. The rest in controlled by other tools of support ( exercise, parent training, educational plan, visual charts, etc).
I have been impressed with results we have had, but for us it took more than one medication. Our son need both a stimulant and a non stimulant. The stimulant really helped to stop the behavior you are describing. The good thing about the stimulant is it only stays in their system until the medication wears off. Also you know right away if it helps. It does not take a long time before you see results. Also with the guidance from the psychiatrist they can determine the best dose. If your child tries it and it doesn't work then you know you have gone down that road.
Right now there is a Nation wide shortage of stimulants, but maybe in working with the psychiatrist they can advise you on this.
Type of medication, dose of medication and timing are all important parts of the journey.
Best of luck in finding a solution for your son. If you have not already I really encourage an IEP or 504 educational plan and if you have not already considered things like ABA training. I am sure other parents can give specific advice about this.
Big hugs for all your trouble. Know that we are always here for you.
Hi. Thanks so much for your replay and advice. It is so much appreciated coming from a fellow parent rather than a Google search or a doctor who I know can not always be completely open or give personal opinions.
So far we have had an IEP since he turned 3 that has become more robust over the years. He’s been supported in a great district and we are happy with his team. He’s been getting ABA since 3 years old, speech 3 times a week and OT 2 times a week as well since two years old. We’ve done everything I can think of to find ways to keep him motivated and encouraged. I send visuals to school, he has a token board, he works for things he really wants and is very proud of himself when he gets positive feedback and praise. I just really worry that this is the year he will begin to really develop a lower self esteem about himself as a learner. I hear so much negative self talk when we do homework and I constantly remind him that all we want if for him to give an effort and that we do not expect him to understand right away or be very good in any subject. We simply want to see that he’s trying. Sometimes when we sit down, he is focused but it does not last longer than a few moments. When we try to do math homework he completely disengages and looks off to daydream. It’s so challenging and I need to keep reminding him to look at the page. We use all kinds of tools and manipulatives but only get a very low level of engagement or attention. I’m thinking a tutor that’s a child slightly older might help. His older cousins have been able to motivate him but it’s hard to get them together so often for homework. It’s a journey and I appreciate other parents who can understand and give valuable advice so thank you!!
It sounds like you are an incredible mom and are working so hard. My advice with medication is you will know when it is balanced and working.
The psychiatrist has been so helpful in knowing the best type, time ans doses. Maturity helps a lot, but for our son taking rhe proper medication helps him control himself better.
Our son tells us he can not even tell he has taken the medication. His personality is his same funny, charming, creative self. But the symptoms of ADHD are under control.
Best to you and we are always here to listen and share with you.
This is exactly what i am hoping for. I do not want him to change at all in his personality and that’s one of our biggest worries. Your response has been so valuable. Thank you!
This was also our concern also and the reason we started working with a child psychiatrist. They know when and how to make it work the best. We tried a few that were not good. But quickly moved on and found what worked. By the way our son takes Guanfacine in a 24 hour dose so there are no breaks in medication. Our psychiatrist prescribes it. Our son is 17 years old and about a year ago I asked him if he remembered what it was like to try other medications and he said " I don't remember doing that". And he ran outside to play.
If the medication changed his personality, you could just stop it. But the best thing would be that school and home life would change and he could better control his actions.
Thank you for sharing all that. I am so relieved to hear all of what you shared and i really am hopeful for our son to have a similar journey to find something helpful.
Do you also have access to a developmental behavioral pediatrician or geneticist with deep knowledge of his gene deletion? I’m wondering if having him seen by someone who can put his skills into perspective compared to other kids with his situation would be useful. I have a 9 year old daughter with autism, ADHD, and global developmental delays and our situation is very isolating and challenging because we never quite know what her maximal capabilities are. She also responds less predictably to ADHD medications than a child without intellectual disability. If you have access to a child psychiatrist with experience managing kids with developmental delays or intellectual disability if your son has ID, I strongly recommend someone with that specific knowledge.
Thank you for that suggestion. He does have a geneticist but his specific deletion has only been studied in 50 people worldwide so we don’t have a lot of information. They ordered a thorough check of his entire body once the deletion was discovered. He had an echocardiogram, ultrasound of liver and kidneys, overnight video EEG and an MRI of his brain to detect anything worrisome. Nothing major showed up but there was some slight activity on the video EEG but not seizures and they also found he has Patent foramen ovale (PFO) which they will monitor and are aware of when discussing medications. At this time they don’t think he needs to have the hole closed but we may need to at some point if it affects him.
We have an appointment with a new pediatrician in a couple weeks so I am going to ask for referrals for any other specialists who may be of more help so we can make sure we are making the right choice.
I feel just as you do when you say you’re not sure of maximal capabilities. My expectations are not that he become an amazing student but just that he can at least grasp some of what they are teaching through gaining the ability to focus more.
I understand. Our daughter has severe inattention and we are struggling to find a medication that will help. She can’t swallow pills, so that really limits our options, particularly with what’s on our formulary. I hope you find a good specialist who can help him feel his best!
Some great advice here, so I’m just going to give you another perspective.
Those of us with ADHD have an interest based nervous system. We might absolutely thrive in some scenarios, but struggle deeply in others. I’m not familiar with gene deletion, and I do not know your son.
I do know, however, that the structure of schooling is not adapted well for many of us with ADHD. Throughout my entire school life I never managed to motivate myself enough to complete my maths homework!! I am, however, considered highly successful in my field.
I have no intellectual delay, or difficulties, you can’t ‘think’ your way out of your ADHD traits.
Given the right context, environment and expectations ADHDers can thrive.
What good qualities does your son have? And what are his intentions?
Is he perhaps quite sensitive and sweet? Wanting to do well, or please? He might function ‘outside of the box’… Does he hold ethusiam for things that do interest him? Is he creative? Does he exude authenticity and give genuine feedback and reactions? Does he sometimes thrive in chaotic situations, and show spontaneity? Does he also show a high sense of justice?
The list goes on! Even if during this process your son never finds the motivation go away and complete his homework. Keep looking to his strengths to help find where (&how) he thrives! School might never be a fit, and that’s ok.
The schooling system was completely wrong for me… even when I could take electives! But I’ve found where I excel, I hack my environment to suit my needs, rather than trying to force myself to conform.
I’ve only been on stimulants in the last couple of years. They do not ‘fix ADHD’, they just help with some of the less desirable traits.
I might be able to sit a little more still, regulate my emotions a bit better and some of those thoughts zipping around my brain have slowed a little, so I can process them a little more smoothly, but I haven’t lost my non-linear and divergent thinking skills, my creativity, or my empathy!
I really hope the titration process goes well and you find what works for you and your son.
But remember everyone can thrive given the right context, environment and expectation!
Hi! Thank you so so much for your perspective and sharing so much with me. Sometimes i think, what if we lived a long time ago or in another place without this typical school system, testing and expectations.? What would he be doing? Or what what he be excelling in? He’s so brave. He teaches himself to do the things he wants to learn. He taught himself to ride a bike, swim and skateboard. He can really learn so much from observing others and he trusts his body. He’s fiercely protective of the people he loves, he speaks up for others and points out when someone isn’t being kind. We are so in awe of him all the time. Teachers say he’s a joy to have in their classroom but the amount of support he needs to complete a task is pretty constant. Thankfully, they have made strides in the schools and he gets access to a lot of tools to help and is allowed breaks whenever he needs them. They’ve opened the OT room for kids to take breaks and move their bodies more, and he gets pulled out for “learning center” where it’s small group and one on one instruction where he does very well. I actually truthfully do not put much importance on school work or grades. My husband and I both struggled with focus and understanding so we know how awful it feels. We just want to find a way for him to tolerate the classroom more and feel more confident because the social aspect of school for him is extremely important and valuable to him. He’s so social and friendly. He looks for friends everywhere we go and I want him to always have access to a wide variety of friends in the school system. If we can find a way to balance the classroom and the playground just a tiny bit more, I will feel it is a huge success. I can’t wait to see what he really wants to do in his life and I will find ways to make the adjustments for him to access the curriculum in any way I can!
Awww I had to respond after reading your description of your son. He sounds like a real gift to the world, with many wonderful qualities all of us wish others had. I wish I could find something to get our daughter to pay attention well enough in school! Just to get her more functional. Our other child takes 2 medicines for ADHD & he is just a more regulated version of himself on them. Definitely no one wants a zombie kid on them! Hugs to you and your sweet superstar 💕
Highly recommend working with a psychiatrist in addition to your pediatrician - even a developmental ped. They understand the chemistry and data on a much deeper level and can answer questions with more specificity. It is their job to give you their opinion! Medication is so individual: the person’s unique reaction, medication type, dose and timing all factor in. Also, the medications interact with each other - and can be prescribed to enhance the effect by working together. A good child psychiatrist - with a good bedside manner - is a game changer
Hi, my son is almost 8 and we have now been working with a psychiatrist to manage his medicine and we also had him take a genesight dna test to help to see which medication would work best for him and it’s made a world of difference we went from a stimulant to a non stimulant and he seems to be doing much better. The dna test showed us that at the time his current medication was in the red zone and not the best for him. So it saved so much time and the experience again for our son to not have to take meds that could give him bad side affects as well good luck
Thank you for this advice! I called today after reading your message to make an appointment with the geneticist and ask about this test. This has been so helpful. Thank you!
My stepkid tried Guanfacine several years ago, but feinted because of low blood pressure. We never tried stimulants because bio mom refuses. This helped me research. The extended release dose must be higher than the immediate release because it’s 1mg over longer time rather than right away. My stepkid did go into special education class from 1st through 5th grades and transitioned back. They learned a lot of strategies in those years, and after struggling in 6 and 7th grades (thanks Covid and new routines in middle school), they did well last year in 8th grade. They found their group and is doing well in school again.
I started my first stimulants about a year ago, and didn’t notice much difference other than I can pick and choose what I actually do, so my therapy experience has become more helpful. I could be on the wrong ones but I have other things on my plate rn, so I can’t explore the right one until other things fall into place.
Hi! That’s so great to hear your step son is doing so well now! I know those really hard years feel like there is no end in sight so hearing from others who have ridden the waves and are in a good place are encouraging!
It’s also good to hear that your own experience wasn’t a major shift. I don’t want a major shift for him either. Just some more help with focusing. thank you!
My heart goes out to you and your son, it sounds like you are on the right track towards a more manageable state. I can tell you from personal experience that it can take a couple years to pin down the right the combination of meds to where therapy can be helpful. The good thing is that you are helping him learn to manage the challenges of his unique brain chemistry while he's young. When I received my diagnosis,I had to mourn the lost decades of my life when I struggled to get through the day and hopped from one job or city to the next hoping things would somehow get better if I started from scratch again.
After my ADHD diagnosis in my early 40's, it's taken almost 2 years to find a good working combination of meds. I recently switched from Guanfacine to Clonidine and found it helped ease the second guessing and negative self-talk. Tried different extended release stimulants and found they just didn't last long enough, what has worked better for me is instant release twice a day.
I've also watched my some of my friends' adult children who have ADHD barely get by working entry level jobs, thinking that they are doing fine without meds. Besides the difficulties with executive function, they have trouble with emotional regulation leading to outbursts that ruin relationships and hinder their careers. This isn't to say that medication is a must, but managing without meds would be difficult for most unless they had some other way to help them compensate.
Hi! Thanks so much for sharing your experience and thoughts. I have a few friends who were diagnosed after 40 and said they cannot believe how long they lived with no diagnosis. It really caused so much stress and self esteem issues for them. My own therapist told me that many of her patients were diagnosed as adults and it’s a relief and also difficult to look back on all the years they struggled without answers. I’m so glad you’ve found something that helps you manage your symptoms. I think there was so much negative press in the 80’s and 90’s about medication for adhd (formerly add) and parents were terrified to medicate their kids. So many people suffered who would have likely benefited. I’m glad you’ve discovered something. your perspective really helps me in my thought process for my son. Thank you
Hello, I have a10 yr old grand nephew who is diagnosed with ADHD. Level 1 autism on the spectrum with delayed development. He takes Concerta 54mg Extended release once daily in the morning and 2mg of Immediate release Guanfacine twice daily (morning and evening) the combination of stimulant and non stimulants seems to work. He has been on Concerta for over a year. Prior to that it was vyvanse which he was on for about 3 yrs with Guanfacine
Your son sounds truly wonderful. And it seems like he possesses so many amazing qualities, (many of which are often found in those with ADHD). It really isn’t a ‘disorder’, the fact is that we put ADHD kids in environments that do not help them flourish. - The traditional schooling system is very much one of those, we love learning and discovering - schools that tune into children's strengths will get much better results.
Your son really is so lucky to have such a great pair of supportive and dedicated parents who have put so much thought and energy into widening his possibilities.
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thank you! 
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