Strattera--what to do?

[sbgrace]

My son started Strattera about 6 weeks ago, give or take a week. He's been on his target dose for I think 3 weeks now.

 

When we started we were having some issues with insomnia. I wanted to delay the start until I could sort out the sleep, but the doctor said we would be ramping up the doses over 3 weeks, he'd be taking it in the morning, and it doesn't typically cause sleep problems.

 

Well, the insomnia is worse than I've ever seen it. We have bad nights most nights of the week. He goes to bed tired, then his mind starts spinning, and he lays in bed for 3, 4, 5 or more hours awake. That's with a 2 hour wind down routine. I'm doing everything I've been taught that has worked in the past. 

 

I don't know whether to ask to step down the Strattera in case it's contributing to the insomnia or wait it out (how long)? 

 

I really regret not sorting this out before starting. He's struggles so much with this heavy fatigue that I can't even tell if the Strattera is helping with the ADHD. He's just a mess. Oh, and he's waking early too, no matter his fall asleep time. That's unusual for him.

 

 

[PeterPan]

Are you allowed to discontinue the Strattera and see what happens? It sounds like the side effects right now are unacceptable...

 

Has he thought of doing mindfulness to calm his brain to sleep at night?

 

Are you using a ped for the meds or a p-doc who does CBT?

Edited April 12, 2017 by OhElizabeth

[MerryAtHope]

I'd get back in and discuss with the dr. 

[kbutton]

There are some genetic tests for drug metabolism, including ADHD meds. Maybe your doctor would be open to that. It's limited, but it's supposed to tell you what kinds of meds match your metabolic profile to give you a more tailored starting point. 

[sbgrace]

Thank you all.

 

I called his sleep medicine dr's clinic today, and they got back to me quickly. The sleep neuro said to stop the Strattera. He said it is very likely causing the sleep problems--it can have a long half life normally and if he is a slow metabolizer it can be even longer. He said we don't need step down, and so we're off tomorrow. I didn't think to ask how long it will take to be gone. 

 

They also squeezed him in to see the behavioral sleep medicine Dr. in early May. 

 

I do think I'll ask about the genetic test. We've had issues with nearly every ADHD medicine we've tried, except short acting Ritalin. Maybe it will tell us something helpful. 

 

 

Edited April 13, 2017 by sbgrace

[PeterPan]

That's great that they can get you into the sleep doctor! If he did well with the Ritalin, why not go back on that? Did they try an XR version?

 

Edited April 13, 2017 by OhElizabeth

[sbgrace]

That's great that they can get you into the sleep doctor! If he did well with the Ritalin, why not go back on that? Did they try an XR version?

 

Yes, they are usually booked out months, so I felt fortunate that they found a spot for us. I must have sounded as desperate as I felt on the phone!

 

He still takes short acting Ritalin every day (1 dose, sometimes 2 but we have to be careful with timing on the second). The Strattera was an add on to try to get some longer acting ADHD control. Any stimulants we've tried past short acting Ritalin, even the mid-range acting Focalin, mess up his sleep. He had major anxiety issues with Intuniv. So frustrating. 

 

He has a psychiatrist appt at the end of this month, but right now I am going to be hesitant to try anything different med-wise I think. We need anxiety help, but it sounds like some of those meds can aggravate ADHD, and it also seems he's pretty sensitive to just about everything medicine wise. 

 

I feel sad. Some kids just have so much to overcome. 

[nature girl]

:grouphug:  I'm sorry, what a tough road you're on...

 

I know you said you don't want to try new meds, but have you thought about Clonidine? Many ADHD kids take it to help with sleep, because it triggers drowsiness, and it can help with hyperactivity, and to a lesser amount focus, throughout the day. Intunive can also cause drowsiness. (I'm surprised they started with Strattera as his first non-stimulant. It's usually a 3rd or 4th line treatment, because it's more likely than the others to have side effects.)

Edited April 14, 2017 by nature girl

[PeterPan]

I'll just toss this out, but does he actually have a caffeine flip or have that sort of reverse effect of stimulants? It's just something to think through. There are times when they're calling it ADHD but the person doesn't have that flip and the reverse effect. It seems like that's what you're walking up to, that maybe there are other causes for the ADHD symptoms besides ADHD.

 

My ds' ADHD chilled with the reflex work. He has never had the caffeine flip, and the ped refused us meds, saying they would make his aggression worse. And I've talked with people where it was food colorings or this or that. You read about sleep apnea causing the symptoms. I'm just saying with the results are that atypical, it's a question to ask, whether you're solving the wrong problem.

[kbutton]

My older DS does NOT have a caffeine flip, and he does wonderfully on ADHD meds. 

 

I think the caffeine flip has limited applicability--like, it's great if it tells you something, but it can be a false negative to have no caffeine flip. 

 

I also strongly suspect that some profiles of ADHD respond better than others...for instance, it might be that some EF deficits are more readily helped by meds than others. 

 

sbgrace, I am curious if you tried multiple formulations of some drugs? My son has good and bad experiences with the same dosage of generics for the same drugs. Some generics give him anxiety, and some do not. The ones that do not are just fine and really work well. In our case, we discovered this after getting a good one, so we had reason to be suspicious that not all generics are created equally. He's never been on a brand name, so I don't know how that would be.

[sbgrace]

OhElizabeth--Caffeine flip? I don't know! Kbutton, good to know that's not a definite indicator too. He does respond to Ritalin, though. When he first started at the effective dose he described it with words like "calm inside" and we have a marked decrease in impulsivity and hyperactivity when it's in full effect. He is suddenly able to start tasks when it kicks in. While we still have focus issues, he focuses well enough with Ritalin to do things like math that are just horrid without. It feels like the ADHD is worse lately, but then he's not sleeping and his anxiety is high (plus tics now) so I don't know. There is a point with his Ritalin (coming down I think), where he's almost sluggish. 

 

nature girl, I will ask the psych about Concerta. However, he didn't sleep at all (all night) when we tried Focalin. 

I just feel scared about anything new. He was definitely not ok today (or, so far, tonight). I assume it's withdrawal--but he's angry, agitated, aggressive, anxious, weepy. (We didn't see that on Strattera itself, just today). A bit scary and entirely exhausting/upsetting. It took him months to decrease in anxiety after stopping Intuniv. I feel really upset right now. 

 

kbutton, that's interesting. He actually does better with a certain brand of generic Ritalin. The pharmacist didn't act like I was nuts, and is ordering the type he does best with for me.  It is interesting that you see anxiety with some generics and not others. I will keep that in mind going forward. 

 

 

Thank you all for taking the time to respond and "hear" me. It helps. 

Edited April 14, 2017 by sbgrace

[OneStepAtATime]

Nothing useful to say but hugs to you.

[Heathermomster]

Strattera did not work for DS either. He stopped and started working with a CBT for EF issues.

[susanfh]

OhElizabeth--Caffeine flip? I don't know! Kbutton, good to know that's not a definite indicator too. He does respond to Ritalin, though. When he first started at the effective dose he described it with words like "calm inside" and we have a marked decrease in impulsivity and hyperactivity when it's in full effect. He is suddenly able to start tasks when it kicks in. While we still have focus issues, he focuses well enough with Ritalin to do things like math that are just horrid without. It feels like the ADHD is worse lately, but then he's not sleeping and his anxiety is high (plus tics now) so I don't know. There is a point with his Ritalin (coming down I think), where he's almost sluggish. 

 

nature girl, I will ask the psych about Concerta. However, he didn't sleep at all (all night) when we tried Focalin. 

I just feel scared about anything new. He was definitely not ok today (or, so far, tonight). I assume it's withdrawal--but he's angry, agitated, aggressive, anxious, weepy. (We didn't see that on Strattera itself, just today). A bit scary and entirely exhausting/upsetting. It took him months to decrease in anxiety after stopping Intuniv. I feel really upset right now. 

 

kbutton, that's interesting. He actually does better with a certain brand of generic Ritalin. The pharmacist didn't act like I was nuts, and is ordering the type he does best with for me.  It is interesting that you see anxiety with some generics and not others. I will keep that in mind going forward. 

 

 

Thank you all for taking the time to respond and "hear" me. It helps. 

My DS takes Ritalin ER in the morning and sometimes an afternoon IM dose, but when the drug is wearing off he is absolutely sluggish.  Like the drug has been pumping him up all day and all of a sudden he is exhausted.  I think it also has to do with the fact that he doesn't eat while the ritalin working.  Once I can get him to eat, he usually regains some energy.  

 

My DS also has some trouble with agitation and melt-downs in general - usually before the meds have taken effect and certainly once the effects are wearing down.  His psych started him on Kapvey twice a day to help with that.  It does seem to help him some with this.  It's a BP medicine, and is also supposed to help with winding down and getting to sleep.  

 

Anyways, I feel for you and your DS.  This journey can be so difficult sometimes. 

[nature girl]

 

My DS also has some trouble with agitation and melt-downs in general - usually before the meds have taken effect and certainly once the effects are wearing down.  His psych started him on Kapvey twice a day to help with that.  It does seem to help him some with this.  It's a BP medicine, and is also supposed to help with winding down and getting to sleep.  

 

Yes, Kapvay is brand-name Clonidine, it's often used for people with ADHD who have a hard time sleeping. I think it can help with tics as well...

 

ETA, Clonidine was the med I meant to suggest in my post above, not Concerta, sorry! I wouldn't suggest Concerta, since that would probably exacerbate the issue stimulants have caused him. Clonidine is a non-stim, and causes drowsiness in most.

Edited April 14, 2017 by nature girl

[geodob]

All of the medications that have been mentioned, increase levels of Dopamine and Nor-Adrenaline.

With the main difference between the med's, are their 'side effects'.

But have the common effect on Dopamine (Do) and Nor-Adrenaline (NA) levels.

 

Though their main action, is as 'Inhibitors'.

So that they prevent enzymes,  from taking Do and NA apart, and removing them.  

Storing them away, for re-use.

 

But what we are talking about, are our Nerve Cells or Neurons. 

Which use Do and NA to send signals along a pathway of Nerve Cells/ Neurons.

 

Where Do and NA sit in gaps between the Neurons, called Synaptic Clefts.

Each Neuron, has a range of different Receptors, that molecules such as Do and NA, attach to.

Which will have an 'effect', as long as they are in place.

 

For example, Nor-Adrenaline, is the Normal Adrenaline that circulates in our 'system'.

When NA is attached to a Neuron, it adds motivation to an activity.

Which keeps our attention focused on an activity.

So that if you look at the 'Pharmacodynamics', of all the previously mentioned Medications?

You will see, that they all 'inhibit enzymes from removing NA from the Neuron clefts.

Which will have the effect of keeping one focused on an activity.

 

But then their is another important molecule, that Neurons use?   Which is called Serotonin (SN).

Each of our Neurons, have 15 different Receptors for Serotonin. 

So that it is used in different ways.

Though the primary use of Serotonin, is a 'Regulator of Signals'.

Which filters out the Signals, and enables us to focus on particular ones.

This plays an essential role, in regulating Impulses.

 

Their are a range of medications for this called: SSRI's.

Which Inhibit enzymes from removing Serotonin, from Neurons.

 

(The full name is:  'Selective Serotonin Reuptake Inhibitors'.   Where this term 'Reuptake Inhibitors' is often used to describe the actions of Med's.  But it simply means, that the Med stops enzymes from removing a molecule, such as Do, NA or Sn from Neurons.)

 

My concern, is that the focus of discussion, is about Medications and their side effects?

Where the real issue, is that having tried these different 'Dopamine and Nor-Adrenaline Inhibitors', without any significant benefit?

That perhaps Serotonin Inhibitors might be considered?

[Storygirl]

Yes, Kapvay is brand-name Clonidine, it's often used for people with ADHD who have a hard time sleeping. I think it can help with tics as well...

 

ETA, Clonidine was the med I meant to suggest in my post above, not Concerta, sorry! I wouldn't suggest Concerta, since that would probably exacerbate the issue stimulants have caused him. Clonidine is a non-stim, and causes drowsiness in most.

 

sbgrace, our pediatrician has added Clonidine to DS's meds to help with his tics. He takes it only at night, as a supplement to his normal morning dose of Focalin. It's only been a few weeks, and the dr. expects to increase the dosage -- we started with a tiny dose to begin with. It's not expected to eliminate tics but might help.

 

You didn't ask this, and maybe you know, but some psychologists can teach a technique called "habit reversal" to help curb tics. We are doing this, too, but haven't started yet.

[kbutton]

By the way, the various extended release versions of methylphenidate, have differing release patterns. Some have a big bump early and then taper, some taper up and then fall off. My son started with generic Ritalin and then went to generic Concerta. Both types required tweaking of the dosage. We  :001_wub: Concerta (again, he's always taken generics). 

 

While Concerta supposedly peaks 6-10 hours with an initial burst at the beginning, my son's behavior is consistent throughout the day. At first, he didn't do great on it, but he was on a pretty small dose. We moved up a dose, and it was AMAZING. 

 

That's not to say that Concerta will be your wonder drug, but there are more options with XR methyphenidate (the active ingredient in Ritalin), so you might ask questions.

 

It sounds like you might not know what OhElizabeth means by the caffeine flip--some people with ADHD find that caffeine relaxes them or even makes them sleepy. I had never hear of this until I met my SIL and FIL. They experience this. One of them has diagnosed ADHD, but they didn't know it was related at all to ADHD (not sure if they do now or not). My guess is that the presence or absence of a caffeine flip might be a clue to what meds or release pattern could benefit that person, but that's just a guess. 

 

Even people with no caffeine flip who have ADHD find caffeine helps them to focus a bit. I know someone who is relying on this vs. meds right now. Meds are superior, but coffee is better than nothing.

[sbgrace]

Thank you all so much for the great information and for just being support. 

 

I will definitely ask about the Clonidine when we see the psych.

 

I do think maybe an SSRI is needed for anxiety, which puberty has really kicked up it seems, but I am concerned about complicating the ADHD and/or a  never ending increase in dosages. I am hoping we can get him rested and see if the anxiety improves with that. I am sure the lack of sleep is contributing, but I don't know how much. 

 

We need CBT type help for EF--I have just had a ton of strike outs in seeking that specifically from providers (two behaviorists, OT, social worker specializing in autism/ADHD). I did ask for a referral to CBT, but when I talked with the therapist before taking him in I was very unimpressed with her ideas and knowledge of areas where she claimed expertise, so I canceled. I do have high hopes with his new behaviorist, and I may ask for a new CBT referral as well. We need that component. 

 

Yes, sluggish as the Ritalin wears off is definitely what we see. That's the bad thing about the short acting Ritalin--he's high hyperactive impulsive when he wakes, medicine kicks in--suddenly calm and focused for less than 2 hrs, sluggish and unfocused as it wears off. I wish I knew what would work for him. It feels scary to try things because the medication fails seem to bring large side effects for him. 

 

Edited April 15, 2017 by sbgrace