ADHD meds with bipolar or aggressive kids

[PeterPan]

My ds does NOT have a bipolar diagnosis, but he is an overmethylator who becomes very aggressive. We are working very carefully with supplements based on genetics to control the methyl levels and keep him even and zen, calm. It's working, which is good. However the latest psych was BEGGING us, outright begging us to consider meds for the ADHD component. He's still astonishing to teach, highly impulsive, and challenging for all his therapists to work with. His pediatrician, not an ASD expert at all, said the meds would make him more aggressive. The stimulant meds are methyl donors, so this make sense.

What are more options? If you've btdt and are wanna share, I'd like to know what you did. You can even write me back channel if you don't want to say it here.

And, fwiw, we're currently using a combo of 5HTP, niacin, and vitamin D to control the methyl levels. He has genetic defects for making both. The 5HTP is bumping melatonin and serotonin. We use a time-release, and it has been AMAZING. I don't have to keep dosing niacin every 2-3 hours to keep him stable. He's just even, beautifully even. So if it's taking that much to keep his methyl levels down, how am I supposed to bring in something else and keep him stable with adding a methyl DONOR? I tried taking a multi-vitamin that happened to have a methyl-b12, unrealized by me, and even that was like, well let's just say it was extremely hard to tolerate, very agitating. 

Are we looking at non-stimulant meds? Are non-stim meds worth anything or more placebo? I just don't know. 

Our other component was that with the ASD we really wanted that self-regulation piece. We've worked on that for several years, and he really is coming along nicely I guess you could say. But his blessed body just gets maxed out. So impulsive, so all over. But I think it was the right thing to want him to understand, yes. But even understanding he's really quite challenging to work with.

[Hypatia.]

We have some experience with non-stimulant ADHD meds. Intuniv (long-acting guanfacine) has been a good fit for one of my sons, helps cut down on his impulsivity. For my other son (aggression and rage in addition to ADHD), Intuniv wasn't a good fit. Kapvay (long-acting clonidine) is helpful for him, but it's in combination with other medications. Finding the right fit for this child is particularly challenging. 

Could you tell me more about what it means to be an overmethylator, and how you found out? 

[nature girl]

We don't have firsthand experience, but I've heard a lot from others, as well as Barkley, about non-stimulants being especially beneficial for leveling moods (although not so helpful for focus and impulsivity.)

[Ravin]

DD takes abilify and zoloft along with her stimulant ADD med. We tried a non-stimulant ADD med before her current one, and it did squat.

[mellifera33]

My oldest son (asd/adhd) takes clonidine, which helps with his sleep and a bit with the overactivity. It’s a balance tho—he could use a higher dose, but any higher and his bp tanks. 

[kbutton]

Have you considered planning for a worst case scenario couple of days and just trying a stimulant med? You'd need a little time to be sure that you're not having an off day or two on its own.

I heard a lot about increased anxiety and all kinds of things, and it turned out to be hype in our case (as long as we got the correct release system). Ritalin/Concerta (generic) works super well here for impulsivity.

[Storygirl]

We tried Guanfacine, and it made DS very sleepy during the day, which was weird for him. It didn't have enough positive impact, so we switched back to a stimulant for him. But he also takes Clonidine at night. If your pediatrician is willing to try one or both of these, it might be worth a try. I'm not sure how they relate to or affect methyl levels. But they are originally blood pressure medicines, so they have a calming effect on the body.

[PeterPan]

3 hours ago, kbutton said:

Have you considered planning for a worst case scenario couple of days and just trying a stimulant med? You'd need a little time to be sure that you're not having an off day or two on its own.

I heard a lot about increased anxiety and all kinds of things, and it turned out to be hype in our case (as long as we got the correct release system). Ritalin/Concerta (generic) works super well here for impulsivity.

This is an interesting point. He's so incredibly hyper on even a small amount of caffeine, as am I. It doesn't seem to have that reverse, slowing, calming effect. It's definitely amping. 

Thanks ladies for sharing so much. I'm going to research these other meds, as I don't know much about them. 

 

[PeterPan]

19 hours ago, Hypatia. said:

Could you tell me more about what it means to be an overmethylator, and how you found out? 

When you talk under-methylation, that's more common and evident directly with genes. You can go to KnowYourGenetics.com or another place, run the engine on your raw data, see which genes in the methylation cycle are affected, and it's obvious where the glitches are. They can even tell you, based on the defects (hetero or homozygous) how much methylfolate, etc. you need.

But when you say over-methylation, no I haven't found something tight like this gene is glitched and boom it cranks out 3X more methyls than normal. I had the *presumptive* thought that he was overmethylated (which would be more technically correct possibly than saying he's an overmethylator, semantics), because he fit the pattern described by people online, especially in the bipolar community, and because he responded exceptionally well to niacin, which is well known to slurp up methyls and take the methyl levels down.

What I *did* find, when I started digging in the genes, were numerous places where something *should* have been happening that would have, as a step in the process slurped up methyls, that wasn't happening because of a genetic glitch. So once you say what's the cause of him being over-methylated, that's more complicated. I've found 2 causes so far, very definite, clear, in the genes explanations. Are there more? I don't know. 23andme kicks out data on like 12k genes or SNPs and I sorta haven't gone through them all, lol. 

Niacin is amazing but has a very short half-life. It only stays in the system about 3 hours total, so the net effect is a child going up and down, up and down. Vitamin D (which we targeted because of a defective vitamin D receptor gene) pulls methyls off cyanomethycobalamin (b12), and stays in the system much longer, giving more stability. 5HTP uses methyls in the conversion of tryptophan to melatonin and serotonin and comes in time release, 12 hour formulations. So now I have genetic indication of things that are low that I can supplement with products that stay longer in his system, keeping him more stable.

I now give him small amounts of niacin twice a day, 5 HTP twice a day, and vitamin D once a day. He's pretty doggone good on that combination. I think he could be better, but we're not seeing ups and downs and unmanageable breakthrough behaviors. As long as we're careful and he's compliant, we're now safe, happy, dependably calm. On niacin alone I was having to dose every 2 1/2 hours, sometimes more frequently, and getting frequent, significant, dangerous breakthrough behaviors. The 5HTP with the 12 hour time release especially is a miracle. It's cheap, indicated by his genes, and he's SO stable on it. 

I'm still working on whether I need to take his 5HTP up a little higher or whether there are more things I might find in the genes. There could be more. My gut says there could be more, which is why I haven't taken it up again. We already are doing 200 mg (100mg time release twice a day) with him, which is pretty significant at his 65 pounds. And any time he's non-compliant it's dangerous. I'd like to have the levels up enough of what we're taking that I don't get breakthrough even if we're 2 hours late. I need cushion like that for safety, and I don't entirely have it, which is why I don't think I've found everything yet.

The danger in using things that pull down methyl levels is you can take them TOO far down, resulting in sluggishness, fatigue, etc. If you believe what you read online, a majority of kids with ASD (90%?) are undermethylators. This means you look at their genes for their methylation cycle and they're just glitched. You can actually have a situation where there are methylation defects AND overly high methyl levels overall. Chew on that one, lol. We're talking separate genetic defects. It's like the idiots who say you can't have dyslexia and ASD. I've seen the genes, and my ds has 1 of the 12 genes for dyslexia. He's got it AND he's got autism. The science just hasn't caught up yet, and the science is trying to explain things with dictionary terms and the DSM instead of looking at reality. Reality is genes and the expression of the genes.

Was that clear as mud? I worked presumptively with the theory of him being overmethylated because it fit the symptom patterns (aggression, bipolar) and because he responded noticeably to niacin. From there it was looking for genetic defects to explain WHY his methyl levels were too high. I've got two genes, but I may find more. 

I am not a doctor.

[exercise_guru]

I have read as much as I can on the subject. Concerta with the activas generic is the slowest releasing method. if the pediatrician started your son on the lowest dose for a month  you might get the dopamine effects without the nasty mood issues. Since you are right there you could monitor it closely.  

Intuniv Works differently. you can read about it here  "This selective alpha2A-adrenergic receptor agonist is not a central nervous system (CNS) stimulant. The mechanism of action in ADHD is not known, but the drug appears to work on certain receptors in the prefrontal cortex, a part of the brain where behaviors related to ADHD, such as inattention and impulsiveness," from what I read its very similar to time release chlonodine. I have taken chlonadine and it made me dizzy but can't say if it helped with "impulsiveness" I was taking it for cancer treatment so I am not well versed in it. I know some parents have told me that it helps with mood and impulsivity but not with focus and attention. 

So if you homeschool and you could fill out some measurement to see if he is improving you could try Intuniv but it takes between 2-6 weeks to notice the effects. 

Strattera is another one. Strattera is a selective norepinephrine reuptake inhibitor. It’s not exactly known how it works to improve symptoms of ADHD. I have concerns about that one especially in a boy that is going through puberty because of stuff I have read from adults. That being said I think that it works on keeping the norepinephrine recirculating. If that is the case it would be better as someone who produces too little dopemine can make the most of what they have. Please post if you find out more about this. 

 

 

 

[kbutton]

15 hours ago, PeterPan said:

This is an interesting point. He's so incredibly hyper on even a small amount of caffeine, as am I. It doesn't seem to have that reverse, slowing, calming effect. It's definitely amping. 

1

The caffeine flip is not at all a reliable marker. It's great if you have that clue to go on, but no one in my house with ADHD has the caffeine flip, and they all respond well to stimulants. Also, caffeine does not act on a specific brain region like ADHD meds do, so it's not going to be quite the same.