We had to stop Atomoxetine because my son has developed adverse reaction- severe tachycardia. Reducing the dose didn’t make the difference in pulse. Only once we stopped completely now his pulse is back to normal ranges for his age.
I now am asking his teachers and his home tutor how they are finding him now. His home tutor said that he’s much less focused and this is to the point that she asks him a question and he’s like ‘Err, what?’ And she has to repeat the question. However what she did say is that she likes him now more as a person- he’s chatty, smiley, joking, asking hundred unrelated questions.
When he was on Atomoxetine he definitely was suffering from the side effects - one of them ‘irritability’.
His teacher couldn’t be so frank but yes her current report is that he’s chatting when he shouldn’t and that he’s very ‘lively’.
I am thinking of having a longer medication break for him- until the summer holidays.
The plan was to introduce Intuniv immediately once the Atomoxetine is fully out of his system. The thing is- my son seems to suffer from severe side effects on every ADHD medication - be it stimulant or non stimulant.
On Methylohenidte he suffered from ‘urinary frequency’ and was wetting himself at school. Now I am reading that with Intuniv ‘urine leakage’ is a ‘common side effect’ affecting up to 10% people and even more prevalent in the group of older children from age 10 (like my son). We can’t risk having this humiliation again and him wetting himself at school.
Yes we can see that without medication he really can’t focus. We know that again he will fall behind with the school work and he has worked so hard with his tutor to catch up 2 years in maths (that’s how effectively state school has been teaching him- that he was 2 years behind …). Tutor was praising him how amazing this is that since September he managed to catch up 2 years. But now she says that since he is off his medication she will need a longer lesson as in 45 minutes she can’t do with him what she could have done with him when he was on medication. She says she now will need 1 hour to manage to do the same work with him.
Has anyone had this dilemma about the ADHD medications for their kids.
Has anyone done let’s say half a year on non stimulant medication and half a year off etc. just to have breaks form side effects and to see their child ‘real’ as they are.
I know that with the stimulants medication breaks are even recommended but we don’t want our son on stimulants.
With non stimulants all professionals were always very much emphasising that this has to be given all the time without breaks.
Especially Intuniv I suppose- can’t be even stopped abruptly as can cause dangerous adverse reactions when stopped abruptly …
I haven’t heard this about Intuniv but my son is still on a 2 mg dosage before bedtime.
My 11 year old son started Atomoxotine in 4th grade (he is now in 6th). We tried 2 different stimulants before the Atomoxotine and found them to cause irritability and anger. We stopped the stimulants after a few days. I believe it takes 4-6 weeks for Atomoxotine to have its full effect. We dosed him up rather quickly only waiting about 1-2 weeks before he peaked at 60 mg (per his body weight). He had a wonderful 5th grade experience….some minor anger outbursts at home but nothing terrible. We decided to wean him off the Atomoxotine last summer. I felt that maybe he didn’t need medicine and could handle school work and social life sans medication. While we lowered his dosage we noticed he started to get angry more often and the impulsivity came back full force. By the time he was totally off Atomoxotine he was really impulsive and obnoxious and disagreeable and just plain unhappy (much like the way he was before we started meds). We slowly started him back on Atomoxotine but never got the same positive effect that we had the first time around. He was ok at school…slightly silly but he was never getting into trouble. At home he was more ODD and ADHD. We weaned him off the Atomoxotine back in December and switched to Wellbutrin. This was a terrible fit for my son and we spent 6 weeks tweaking the dosage until we finally took him off. The worst reports we received from his teachers was while he was on Wellbutrin.
I feel your pain and frustration with your search for finding the right treatment for your son. Now My son is on Intuniv started 1 mg then 2 mg then 3 mg and he is calmer but too calm. He went from being a great soccer player to just walking on the field barely kicking the ball. So we decreased his dose down to 2 mg and we are adding Concerta (fingers crossed he is older now and able to tolerate stimulants). Intuniv has been ok but I feel it makes him tire easily and this is not great if you play sports (especially in the heat). The intuniv doesn’t really help my son with focus. It has helped tone his physical behavior down but to the point where it doesn’t feel right (too sluggish and super SLOW). Maybe this is a great medicine for super hyper kids who cannot sit still and my son is not that type.
There’s so much to consider when choosing a medication and the one thing that puts my mind at ease is knowing that we don’t have to continue with something that doesn’t make my son feel better.
Thank you for sharing your son’s journey with the medication.
My son is impulsive so if Intuniv would help with this then it would be great. He’s also terribly inattentive so it’s not great that Intuniv won’t help so much with focus…it’s not only you pointing it out, many parents here mentioned this about Intuniv.
My son seems to get every side effect in every medication even though the ‘frequent’ side effects mean affecting 10% people taking medication. This means 90% won’t have this side effect… my son seems to always be in that 10% who have adverse reactions and severe side effects. On Methylpenidate he developed a rare side effect ‘urinary frequency’ and not able to hold urine in bladder until it’s completely full, but ‘dying’ for pee permanently and feeling such pressure on bladder that he was wetting himself- every time the same time, about then Methylpenidate starts leaving the system…
You say that the good thing is we don’t have to continue something that doesn’t make our kids feel better yet my son’s consultant insisted that ‘incontinence’ is not a side effect of Methylphenidate and that we have to take our son to incontinence clinic and have him evaluated and that ‘that’s how he is, his neurodiversity - when we were pointing all other severe side effects’.
It took us 8 months to take him off Methylpenidate as consultant kept saying that the range of stuff we were describing is ‘nothing to do with Methylphenidate.’ Yet all that’s topped when we stopped Methylphenidate. And then consultant casually said ‘ah, so it just must be that these were side effects since now we stopped medication those effects ceased.’
In Intuniv side effects ‘urinary incontinence’ is listed as ‘frequent’ side effect and affects up to 10% people on medication. So your son just is lucky to be in 90% of people who don’t get this side effect…
We didn’t have choice but stop Atomoxetine- since if the adverse effect on heart. Had this been okay we would carry on regardless of ‘irritability’ as we now know there is no perfect medication.
I’d be interested to know how it will be for your son in reduced Intuniv and added stimulant…
Wellbutrin is not licesenced for kids in the UK so we don’t have such a wide range of stuff available. Also here no one does ‘off licence’ prescribing for kids. And it’s not allowed to mix 2 ADHD medications so kids have to be just on one medication. This means we can’t have a kid on a stimulant and non stimulant at the same time…
My son is 7 and we’ve been on this ADHD journey for about two years. The one thing I’ve learned so far, is that you know your kid best. If you think some thing is causing his urinary incontinence, you are probably right. My son is currently on 1 MG of Intuiv and Focalin XR 5 MG. He experiences a weird feeling of needing to urinate, even though he just did. Also decreased appetite until night. That said, that combo works for him overall for now, as he tics without the Intuiv. The XR formulations are much better at slow-releasing the medication, and helps him w mood swings from them. My recommendation is to try XR formulations before upping dose. We tried atomoxetine, but stopped after one week, as I genuinely believe that it caused some issues with his liver and depressive mood swings. I think it really taxed his liver as he got super sick from a normal cold and an immediate ear infection the week he started taking it. Also, hot tip I just learned, if your kids have adhd and/or ASD, don’t give them anything w acetaminophen (Tylenol). It apparently depletes gluthionine in the liver, which is essential for the brain and already commonly low in these populations. We are now working w a functional doc. The idea is to repair nutrient deficiencies w supplements so that we can eventually wean off of traditional meds, which for us have detrimental side effects. A book our doc recommended is “Nutrient Power” by Dr. Walsh. I found it illuminating. Sending you hope and support 🙏❤️
I would say ADHD is such a complex disorder. For my son Atomoxetine worked great for a long time. First of all it got him out of depression that he developed whilst being on Methylpenidate for 8 months (which was a cruel ordeal for him).
I think we as parents got too greedy and thinking about Atomoxetine ‘Wow, this works, give us some more of it and maybe it will work even better.’ And the consultant listened to us and upped the dose. And then all started going down hill with the heart rate…
I wish we stayed in a lower dose when his pulse was still fine and he wasn’t suffering from irritability as he was actually focusing better whilst in this medication.
To compare- now he’s off his meds and he has always been all right with his spellings but not like a genius so basically he has to practice a couple of times and then he’s ready for a test at school. Now he’s off his Atomoxetine and he practiced as normal a couple of times and even whilst practicing he was already so unfocused - he was telling himself ‘double r’ and then the same moment writing 1 ‘r’! After the test I asked him how did it go and he said ‘I had 6 wrong. It’s only spellings, it doesn’t matter.’ When he was on meds most times he was getting 100% …
It might have been that it was coincidence for your son that he has had all those viruses, illnesses going on as you were commencing him on Atomoxetine.
What I noticed- my son did suffer a bit if tummy aches on Atomoxetine (and before this medication he has never complained of tummy ache).
Also what I noticed about Atomoxetine- my son has always been prone to all noro virus, vomiting bugs etc (since baby) but whilst on Atomoxetine once he got a common school ‘vomiting bug’ - it was like a super bug, basically he would be ill with it like for 10 days instead of normal 1-2 days. Also it was hard to know if a tummy ache and nausea is a start of ‘vomiting bug’ or is it just his side effect of medication. So a couple of times I was firm and sent him to school only to find out later that he ‘projectile vomited in the class on his desk’ and then thinking to myself ‘Right so this wasn’t Atomoxetine side effect, he has a vomiting bug’.
We would have kept my son on Atomoxetine had he not developed dangerous heart adverse reaction, because he was focusing slightly better whilst on Atomoxetine...
His class mate is also on Atomoxetine but even though they are both similar frame and weight he has been on half of what my son was on. He hasn’t developed tachycardia or any serious adverse reaction and he’s happily continuing on this medication. Now I wish we stayed on lower dose…It’s just we can’t turn back time.
My son is having ECG next week and I hope his heart recovered once we stopped Atomoxetine.
I'm so sorry to hear about your son's struggles with the side effects of medication. Have you considered a non-medication approach?
My son (9) was diagnosed with severe combined type ADHD in October of last year and someone recommended the book Finally Focused by James Greenblatt. Greenblatt explains how a wide variety of mineral/nutritional imbalances contribute to ADHD symptoms. Certain imbalances can cause stimulant medications not to work or to have unpleasant side-effects.
Through working with an integrative pediatrician, we've found that my son is very low in Omega-3s (common for kids with ADHD) as well as iron, zinc, lithium, vitamin D, vitamin C, B vitamins… He eats pretty well for a kid but he has evidence of a yeast overgrowth. My son also has a common gene mutation in the MTHFR gene (tested by the standard genetic screening for ADHD drug compatibility) which makes it more difficult to methylate folate and therefore harder to make neurotransmitters. We are now treating him his deficiencies and imbalances based on actual data and he has no side-effects. His explosiveness is gone and although he still gets irritated and can be somewhat defiant, he is so much happier and calmer. He does take a lot of supplements each day but they are giving his body the nutrients it lacks so we both feel good about it.
Just something to consider. I hope your son is able to finish out the school year on a positive note!
You are lucky to be in the US where once someone has money- sky’s the limit for treatment options. What you explain sounds very expensive and as you say- you are getting results for your child that satisfy you.
In the UK none of this is available even if we did have unlimited funds.
In the UK (and we are near the capital city) there is no such thing as testing which ADHD medication would work best for a certain person. There are even no tests to determine how the person metabolises Atomoxetine (some people can tolerate lower doses only and I read in the US this can be pretreated before you commence medication). Here it is all trial and error.
With my son we did probably a fair amount of testing etc as we have a very good private health plan so we don’t only rely on NHS - so we know he is not allergic to anything, he has had genetic tests and we know he can’t have Coliac (as he doesn’t have that gene), he eats a varied diet- including a range of dairy (we mix cows, sheep and goat products and try to have them all at home), oily fish such as salmon for Omega 3, white fish, sea food such as prawns, clams, you name it. He even eats offal- we all love liver, various meat types, all grass fed… He loves all vegetable, whole grains etc and a wide range of fruit and we try to buy organic (bio) without pesticides…
As you say- what we will never know is how his body absorbs it.
To be honest where I think brain development went wrong for my son was when he was a baby and ‘failing to thrive’ and being below 2nd centile when he was 3 months old and didn’t feed and doctors kept ignoring. This dragged until when he was 7 months old, only breastfed as he refused formula… - so basically in time when babies grow their brains to double them in size in comparison to what they were born with- my son was malnourished. I think that’s sadly what messed his brain.
There is a lot of historical evidence that in times of famine in Europe for example during world war 2 there was a phenomenon called Dutch famine and this is well evidenced how this has had then impact on the whole generation of those babies being born during the famine and then as adults there was statistically much more suffering from schizophrenia etc.
So I totally agree that nutrition is critical however I somewhat believe that it’s critical in womb and in infancy as that’s the time when brain grows and develops and when gene expression happens…
I do what I can in terms of nutrition- my sons both has had Omega 3 supplements given since they were a few months old babies. They both get multi vitamins and minerals daily… my ADHD son gets a high dose of Omega 3 (3 times what my non ADHD son gets).
My ADHD son has had iron deficiency - it has been tested when he was 6 years old and corrected but it must have done a lot of damage to his developing brain too and there is a lot of evidence and statices that kids with ADHD suffer more form low iron stores… It’s just we can’t turn back time, we can do only what we can do now…
Also I am only limited to what is available in the UK…
Now that he’s off his medication we just know that we have to have slightly lower expectations. I treat it very much as - as long as he enjoys school (and he still does love school), as long as he manages to do his after school and weekend clubs and enjoy and learn there )- it means that he functions okay. I think participation the most important- keeping him busy with sports … Supposedly ADHD kids need at least 1 hour per day physical exercise… And he gets it in form of varied sports…
Pattimum, has he been evaluated for additional diagnoses? Eg ASD Asking because it sounds like he has had a very difficult time with side effects and meds, & that’s not uncommon in ASD kids (mine both have ASD). Also, my son for instance has poor insight into his moods (I have wondered about mild depression) & I know sometimes ASD kids can have depression lurking along with ADHD etc. Sorry, I don’t want to sound like a med pusher or anything.
I have been on the ball with all the possible assessments and screenings for my son. He has had a multidisciplinary (spread over 3 days over 2 weeks) group (group observation) plus individual ASD assessment with ADOS and the decision was made that ‘he does not present as a boy with ASD’. It was me pushing for this assessment as it’s so hard to pin point stuff with neurodiverse kids.
He’s now diagnosed with developmental coordination disorder but I would say he’s not a typical here either as he’s super good on his bike and scooter, he loves team sports and is actually not too bad in football and in cricket he’s coming on too. He can even do his tie! For him it’s mostly fine motor skills such as hand writing that just doesn’t come on and that he has to practice much more than a kid without dyspraxia and some stuff when it’s more complex coordination then he does struggle- like swimming certain styles. Frog legs- it’s just painful to watch him😄But he doesn’t give up, and his coach says he will get there eventually. So basically he can swim and dive etc but the styles are ‘messy’- no proper coordination of breathing etc.
He has had tics for a few years now but they are mild but both movement and vocal hence he is on a waiting list to screen for Tourette’s syndrome. One of the parents here told me that kids with Tourette’s sometimes may be mixed up that maybe they are on a spectrum…
My son also has a mild stammer. So definitely something messed up in basal ganglia part of the brain! Hence maybe you are right- the meds can’t work properly as there are other things going on.
I would say the most important in screening for ASD is the ‘social domain’ and does the child understand social rules, ‘greys’ of life (and not only black and white), is the child flexible and easy going and not too much stuck on routines, easy going breaking the rules (that’s typical ADHD and that’s what my son is- all rules are to be broken, at least at home 😄). Kids with ASD are more ‘caring’ about the rules- that’s what I hear from my friends who have kids with ASD.
I’d say overall immaturity in social domain and executive function in ADHD can be easily mixed up and people may think ‘maybe it’s ASD’. So you are right, that’s always good to screen for both. And also statistically it’s like 50% of kids with ASD also have ADHD so clearly those 2 neuro developmental conditions go together!
I had always been very carefully asking my son about the situations at school (my screening for ASD😄) and he’s good at trying to understand other people. He’d say things like ‘Maybe they do it because sometime has done it to them?’ which I feel is very philosophical.
He’s like ‘fine, yesterday it didn’t work out and I was bullied when playing piggy in the middle’ (by the usual gang of boys…) ‘but today ‘X’ was off sick (gang leader) and it was different kids playing and it was fun and we were taking turns’.
So he’s got this flexibility of assessing situations and knowing that similar situation may get you different results. Never mind I was furious as I told him ‘no more playing piggy in the middle’ yet the very next day he went to play it 😄
He’s explosive and emotional (that’s typical ADHD) yet then he is able to acknowledge why- so let’s say the other day a mate on play day had brand new expensive football kit and shiny Ronaldo boots and my son just couldn’t cope- Green from envy, shouted a few nasty things such as ‘I hate (name of the team’ and your kit.’ A few moments later he was able to acknowledge that he is ‘jealous’- he came over to this mate and apologised and said ‘I love your kit, I was just jealous.’
The thing is, kids with ADHD don’t know when to leave the situations, often they get ashamed after such stupid outbursts such as my son with the ‘kit that he was jealous about’ and if you as an adult don’t help them to apologise they may feel too ashamed to do it… And they may burn the bridges in friendships etc… also because of impulsivity they may misjudge. And this all may be misinterpreted as ASD…if you don’t analyse the situations and ask detailed questions.
As for depression in my opinion it’s not only ASD kids who can get it. Most neurodiverse kids will get depression at some point in their life- I don’t know if this is because of their brain make up or maybe because if you see that ‘everything in life is harder’ because of ADHD or Tourette’s or stammer or dyspraxia or ASD- well that’s kind of depressive, right? Or maybe because they feel isolated once they burnt all the bridges in relationships if they weren’t helped to develop those?
I’d say- my son definitely developed depression whilst on Methylpenidate. That’s why it was a God sent to stop Methylpenidate and put him straight on Atomoxetine as this treated both ADHD and depression.
Now he’s been off all meds for nearly 2 months. He doesn’t look depressed to me- not at all. He’s keen to get up, happily goes to school (he has always loved school) and he attends all his after school clubs- swimming, Karate, football and cricket plus he’s got Cubs and he loves this and when they do camps and sleep overs etc. He also is fine with his home maths tuition once a week. And since now he states away from a gang of boys to whom he was looking up and was an underdog - he also stopped being bullied and he gets nice time at break times playing with other kids . And that’s all without the meds. And yes, his focus is hopeless now… But looking in a wider perspective - I think for now that’s good enough for me, he’s only 10, we know that academically he is behind to where he should be but as long as everything else works fine then it’s manageable for now.
All the above is a test that a child is not depressed. A depressed child avoids doing things. And then it’s a vicious circle - because to get out of depression one has to be active and doing things and socialising and having fun with others.
I have read research journals and there is a link with therapeutic stimulants use for ADHD and depression. It seems you can’t have it all without paying the price…I’d say there will be a dilemma what is first- egg or a chicken… Is it causal (so do stimulants cause depression) or is it that people with ADHD are more prone to depression. It’s all sooo complex….
So many times I feel near depressed because of my ADHD son! And I don’t feel like exercising or going for coffee with other mums or chatting with other mums from his class… But I am always cheerful and chatty and love going out with mums from my other son’s class - because he doesn’t have any ‘conditions’ so it’s a nice chat for me😄
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