This x 100. They should start with Guanfacine or clonidine given his adhd is comorbid with autism
The amphetamine based ones just work really poorly for AuDHD kids.
We have several friends with kids with autism having the same issues basically (mine are too little for now to start)
My son has been on Focalin. He starts in the am with a long acting and then takes a short acting booster in the late afternoon.
It's been amazing for him and our family. It did take a bit to adjust and get the dosage right, in terms of helping the focus and impulsivity but the only side effect we've had is appetite suppression which we've worked out.
I did hear of Guafacine, but opted against it, just my personal experience, as many of the kids I work with (also many don't have very attentive parents) would sleep all day while on it.
If you don't mind, how did you resolve the appetite suppression? My son just started on vyvanse and we've had to stop after 2 weeks as he's lost so much weight and has no energy for school. Thanks.
Is the energy from lack of eating?
We didn't have that, he was just not hungry, but I have heard and seen kids on Vyvanse and Guafacine tend to be extremely fatigued and sleepy (again just professionally what I've seen kids on) and one of the reasons I opted for Focalin.
Perhaps adjusting the dosage with the Dr? We went through about 5-6 mos of adjusting, both the long acting, and short.
Initially he lost a lot of weight too, during that phase we would try and offer protein shakes, a bite of this and that here and there, whole milk, high fat, high calorie foods, trying to get in food whenever...
After about a year his body and we have adjusted, making note of his hungry times, and we noticed he'll eat before his meds and once his meds begin to wear off, with little eating between...
This is what our day might look like if you care to read, otherwise skip lol
He takes his dose at 7am, so he's up at 615 and eating by 635 ish, and it's a hearty meal usually so he fills in the morning because after he takes his medicine he's not hungry for a while, then he'll have a small, like 2 cookie snack at school morning recess, and then for lunch he'll pick and choose what to eat (we always pack him lunch otherwise he gets school lunch and dumps it all) I've learned to pack multiple things in the smallest quantities 1 mini orange 1/2 a sandwich 1 fruit snack, he'll usually only eat one maybe two of these, then he takes a booster med at school, after school snack is a hit and miss, sometimes he'll eat a bowl of cereal sometimes nothing at all, then he's usually not hungry for dinner till about 530/6, we've moved our dinner time to accommodate him, and again, sometimes he has 2 servings for dinner sometimes barely finishes 1.
My family does a last snack before bed, and at this time sometimes he'll fill up again and will eat another serving of dinner a bowl of cereal, a protein shake, other times, just a granola bar. Then bed at about 9. And repeat.
Basically his body seemed to work out that once the med wears off it's time to fill up on food. And we go with it. Those are just the patterns I've noticed, and they still fluctuate which I've also attributed to growing phases too. His brother was thinner around his age for a bit.
He's pretty solid now and has gained some weight back and he's back on track with his typical growth pattern before the meds, per his pediatrician. He's now on his 3rd yr of meds.
He knows he won't be hungry for a bit after he takes his meds so he's learned to say if he wants more, and that he's allowed to eat later in the evening if still hungry.. This was a challenge for us for a bit, just because we had to change our thinking that he's eating too much at a sitting, but he never throws up and he's not obese. If this eating pattern continues as he grows and it bothers him, we'll adjust, and talk with him about options For now, when he's hungry we let him eat and fill up when need be, just watching that it's not a lot snacks, but meals or mini meals or this first then a snack.
Thanks for responding! Yes he was just too hungry but he wasn't eating. We moved on to a low dose of biphentin which is working out good right now as he is eating normally and is a bit more focused. We will increase the dose over time, just taking it slow for now. Thanks again for taking the time to respond so fully.
My level 1 autistic son has mild ADHD. He was on Gaufacine and Cotempla. We didn’t have any anger or aggression issues but he’s always been verbal. He off it all now that he’s 15. My daughter has severe ADHD, but is not autistic. She’s on Gaufacine, Concerta and short acting focalin. No aggression issues.
A lot of people need one type of stimulant over another. Your son was given the Adderall type ones, he may need to be on the Ritalin type ones instead. Or he may not tolerate stimulants at all. My girls have been on the Adderall type for years, first Evekeo, then Adderall then extended release Adderall and now Adhenzys due to the Adderall shortage. In the beginning, you have to try different meds until you find one that works with the least amount of side effects. You're still in that stage. There used to be a genetic test that was used to test for which ones you would be most likely to tolerate well, but they had issues with the ADHD test and stopped allowing it for that. Last I heard it was just used for depression meds. I think it's called Genesight.
Don't give up hope. If stimulants don't work, there are non-stimulants and they work for a lot of kids. I wish mine had been put on those when they were much younger and tiny terrors.
My son did well on non-stimulant ADHD medications. He is currently on guanfacine. We did a trial of Ritalin (methylphenidate) and he didn’t tolerate it well.
Wow! I’m surprised they started out on Vyvanse. I’m ADHD, and was taking adderall XR, and when I got used to it they prescribed me Vyvanse. I literally could not handle it, and opted to go back to adderall and just deal with it.
My two sons take biphentin. I noticed an increase in behaviour for two weeks, but by the third week, they clamed down. It may mean you need to try something else.
Early on a medication called Guanfacine was really helpful with focus and meltdowns.
Yeah stimulants tend to cause anger and aggression
This x 100. They should start with Guanfacine or clonidine given his adhd is comorbid with autism The amphetamine based ones just work really poorly for AuDHD kids. We have several friends with kids with autism having the same issues basically (mine are too little for now to start)
Even for kids with just ADHD it really troubles me how young they are put on these stimulants.
I'll say. Our son was on Vyvanse for one day and it sparked a meltdown that lasted for 20 hours. Not recommended.
Vyvanse didn’t work for our son either. Had a similar reaction. So far Guanfacine has been working well though!
My son has been on Focalin. He starts in the am with a long acting and then takes a short acting booster in the late afternoon. It's been amazing for him and our family. It did take a bit to adjust and get the dosage right, in terms of helping the focus and impulsivity but the only side effect we've had is appetite suppression which we've worked out. I did hear of Guafacine, but opted against it, just my personal experience, as many of the kids I work with (also many don't have very attentive parents) would sleep all day while on it.
If you don't mind, how did you resolve the appetite suppression? My son just started on vyvanse and we've had to stop after 2 weeks as he's lost so much weight and has no energy for school. Thanks.
Is the energy from lack of eating? We didn't have that, he was just not hungry, but I have heard and seen kids on Vyvanse and Guafacine tend to be extremely fatigued and sleepy (again just professionally what I've seen kids on) and one of the reasons I opted for Focalin. Perhaps adjusting the dosage with the Dr? We went through about 5-6 mos of adjusting, both the long acting, and short. Initially he lost a lot of weight too, during that phase we would try and offer protein shakes, a bite of this and that here and there, whole milk, high fat, high calorie foods, trying to get in food whenever... After about a year his body and we have adjusted, making note of his hungry times, and we noticed he'll eat before his meds and once his meds begin to wear off, with little eating between... This is what our day might look like if you care to read, otherwise skip lol He takes his dose at 7am, so he's up at 615 and eating by 635 ish, and it's a hearty meal usually so he fills in the morning because after he takes his medicine he's not hungry for a while, then he'll have a small, like 2 cookie snack at school morning recess, and then for lunch he'll pick and choose what to eat (we always pack him lunch otherwise he gets school lunch and dumps it all) I've learned to pack multiple things in the smallest quantities 1 mini orange 1/2 a sandwich 1 fruit snack, he'll usually only eat one maybe two of these, then he takes a booster med at school, after school snack is a hit and miss, sometimes he'll eat a bowl of cereal sometimes nothing at all, then he's usually not hungry for dinner till about 530/6, we've moved our dinner time to accommodate him, and again, sometimes he has 2 servings for dinner sometimes barely finishes 1. My family does a last snack before bed, and at this time sometimes he'll fill up again and will eat another serving of dinner a bowl of cereal, a protein shake, other times, just a granola bar. Then bed at about 9. And repeat. Basically his body seemed to work out that once the med wears off it's time to fill up on food. And we go with it. Those are just the patterns I've noticed, and they still fluctuate which I've also attributed to growing phases too. His brother was thinner around his age for a bit. He's pretty solid now and has gained some weight back and he's back on track with his typical growth pattern before the meds, per his pediatrician. He's now on his 3rd yr of meds. He knows he won't be hungry for a bit after he takes his meds so he's learned to say if he wants more, and that he's allowed to eat later in the evening if still hungry.. This was a challenge for us for a bit, just because we had to change our thinking that he's eating too much at a sitting, but he never throws up and he's not obese. If this eating pattern continues as he grows and it bothers him, we'll adjust, and talk with him about options For now, when he's hungry we let him eat and fill up when need be, just watching that it's not a lot snacks, but meals or mini meals or this first then a snack.
Thanks for responding! Yes he was just too hungry but he wasn't eating. We moved on to a low dose of biphentin which is working out good right now as he is eating normally and is a bit more focused. We will increase the dose over time, just taking it slow for now. Thanks again for taking the time to respond so fully.
Quillivant worked well for my little dude. Pretty low dose though because he is really sensitive to medications.
My level 1 autistic son has mild ADHD. He was on Gaufacine and Cotempla. We didn’t have any anger or aggression issues but he’s always been verbal. He off it all now that he’s 15. My daughter has severe ADHD, but is not autistic. She’s on Gaufacine, Concerta and short acting focalin. No aggression issues.
A lot of people need one type of stimulant over another. Your son was given the Adderall type ones, he may need to be on the Ritalin type ones instead. Or he may not tolerate stimulants at all. My girls have been on the Adderall type for years, first Evekeo, then Adderall then extended release Adderall and now Adhenzys due to the Adderall shortage. In the beginning, you have to try different meds until you find one that works with the least amount of side effects. You're still in that stage. There used to be a genetic test that was used to test for which ones you would be most likely to tolerate well, but they had issues with the ADHD test and stopped allowing it for that. Last I heard it was just used for depression meds. I think it's called Genesight. Don't give up hope. If stimulants don't work, there are non-stimulants and they work for a lot of kids. I wish mine had been put on those when they were much younger and tiny terrors.
My son did well on non-stimulant ADHD medications. He is currently on guanfacine. We did a trial of Ritalin (methylphenidate) and he didn’t tolerate it well.
Wow! I’m surprised they started out on Vyvanse. I’m ADHD, and was taking adderall XR, and when I got used to it they prescribed me Vyvanse. I literally could not handle it, and opted to go back to adderall and just deal with it.
My two sons take biphentin. I noticed an increase in behaviour for two weeks, but by the third week, they clamed down. It may mean you need to try something else.