ADHD med disappointment

[sbgrace]

I guess this is a vent, but I would welcome any thoughts.

 

My son tried non-stimulant ADHD meds first, which caused severe anxiety. I guess that's unusual, but it happened for him.

 

My son started Ritalin (short acting, 3-4 hr) maybe close to 2 years ago.. We began with 5 mg, which did nothing and then 10 mg which didn't do enough. He settled on 20 mg, and it has really helped. 

 

When it's in place, the hyperactivity component is gone, and he is able to start working easier (task initiation). He probably focuses better too. I'm sure he does.

 

But he's best for about an hour, then a bit over-sedated/tired and less able to focus. We end up having to try to shove heavy thinking school into a really short time period. I I think we get some rebound, with more severe impulsivity and hyperactivity, later.

 

We can give a second dose after lunch if he wakes early enough. We found, in conjunction with sleep med doctor, that he needs 7-8 hours after his last dose before bed so the med doesn't cause severe insomnia.

 

We were hoping for a more even help, so his doctor prescribed Focalin. It's medium acting, and we started with just 5 mg.

 

It was very good in that he had calm focus, without the ups and downs and fatigue we get with Ritalin. He was able to eat with, it, probably because the dose is low. I gave it during breakfast, within an hour of waking up. We liked it. I suspect the dose was a little low, but it was maybe as good focus wise as the sedated arm of the short acting and still helped the hyperactivity end pretty well.

 

He went to bed about 12 hours later (10 pm).

 

He didn't sleep at all. He was still awake at 6 am, and upset. He said his mind wouldn't turn off. Melatonin and breathing he learned from sleep medicine dr. didn't help.  It's the same mess we had when giving the short acting doses too late.

 

I feel really disappointed. It seems so extreme. Kids take forms that last so much longer and do fine. I don't get it.

[maize]

There are other options to try, I wouldn't give up yet.

[OneStepAtATime]

Agreed. There are other medications to tey.

 

And sometimes it also takes time for a body to adjust to the difference in medication .

[sbgrace]

Would you keep trying Focalin to see if he adjusts?

 

I'm really concerned about the effects of essentially skipping a night's sleep, particularly in his case.

[MomatHWTK]

I sometimes stay up for 28 hours or so and then sleep for 16. That is very rare, but it happens. It was worse before I started a non-stimulant medication. (I just began taking medication in the past few years.) 

 

Maybe ask your doctor what an acceptable time frame is for your son to adjust. 

[Storygirl]

That's frustrating.

 

Did that happen on the first day? I agree that it may take time for him to adjust.

 

Here are a couple of suggestions to think about:

 

* Can he get up earlier? It may help him to have a regular time to wake up and then take the meds. If he could take them at 7 am, for example, it should be out of his system whenever he goes to bed.

 

* Have you tried guanfacine? DS tried it (we tried many things), and it really made him sleepy. He is NEVER sleepy (even at night, unless he takes melatonin). I think some people take their stimulant med in the daytime and then guanfacine in the evening as a two-pronged approach. It's something you could ask your doctor about.

 

* Is the Focalin he took a 4 hour dose or the extended release? It's possible that he is taking a longer-acting formula than he is used to, but you can get the short-acting generic if you have not tried that.

 

The fact that the ritalin only helped for an hour or so and then made him sleepy is interesting. DS tried Ritalin but had some side effects, so we switched to Focalin, and it did have a smoother effect for him, with fewer ups and downs, so it may be worth it for you to stick with it for a bit to see if you can make adjustments to make it work.

[PinkyandtheBrains.]

Try combining fish oil high in EPA (600+) with the the lowest working dose of medication.  The fish oil can help provide some focus, and won't affect appetite or sleep.  It takes a few weeks to full adjust to dosing, so sleep may improve over time. 

 

 

Some kids metabolize the medication faster, shortening the working period.

Edited February 21, 2017 by PinkyandtheBrains.

[PeterPan]

Are you taking data on when that hour of good is? Some people are really fast metabolizers, and some people don't even have the meds kick in for 2 hours. So it would be helpful to take data. Like give it to him at 7am and take data every hour. That way you can be precise on when it's kicking in and when the fatigue is starting. 

 

It's not totally clear to me whether the good hour is once it has kicked in or *before* the meds have completely kicked in. Data would show you that.

 

Are you sure he has ADHD? Just working backward here. Like when a person is having an atypical response, it's a reasonable question about whether we guessed the right explanation for the symptoms, kwim? Has he had an eval for retained reflexes?

 

Some people find the meds help them sleep *better* not worse. It should be shutting down some of the excess thoughts that keep them awake. 

[Ravin]

I would re-evaluate and see if one of the other stimulant meds, with a better side effect profile than ritalin, might be a better fit for him.

[Serenade]

Try combining fish oil high in EPA (600+) with the the lowest working dose of medication.  The fish oil can help provide some focus, and won't affect appetite or sleep.  It takes a few weeks to full adjust to dosing, so sleep may improve over time. 

 

 

Some kids metabolize the medication faster, shortening the working period.

 

Interesting.

 

My son is also having trouble with meds not working very well or long.  We've tried prescription fish oil pills (alone) in the past, and that didn't seem to help much, either.  But a combination is maybe worth a try.  

[Paige]

Stimulants increase anxiety with things like OCD, depression, and other mood disorders. You can have ADHD in combination with either of these or these could present similarly to and be confused with ADHD. I would look for a different med that had less side effects and that plays well with anxiety disorders. DS went through a ton before we figured out the problem wasn't ADHD at all. The ADHD meds did seem to improve things temporarily, but they never really seemed right or quit working after a while, or caused more issues. 

 

If you really think the diagnosis is good and the med is the best fit, you could always add a sleeping pill for insomnia...it's not ideal but lots of people do it. My DS used to take melatonin until he began public high school and we found that waking up at 5am to be ready at 7am (his choice), is sedating enough!

[maize]

Stimulants increase anxiety with things like OCD, depression, and other mood disorders. You can have ADHD in combination with either of these or these could present similarly to and be confused with ADHD. I would look for a different med that had less side effects and that plays well with anxiety disorders. DS went through a ton before we figured out the problem wasn't ADHD at all. The ADHD meds did seem to improve things temporarily, but they never really seemed right or quit working after a while, or caused more issues.

 

If you really think the diagnosis is good and the med is the best fit, you could always add a sleeping pill for insomnia...it's not ideal but lots of people do it. My DS used to take melatonin until he began public high school and we found that waking up at 5am to be ready at 7am (his choice), is sedating enough!

Did your son switch to an anxiety medication?

 

I have one with both anxiety and ADHD symptoms we are trying to sort out.

[Paige]

Did your son switch to an anxiety medication?

 

I have one with both anxiety and ADHD symptoms we are trying to sort out.

 

Yes. It was a much better fit. DS was disappointed to switch because he *liked* the stimulant. I mean, stimulants are on the black market for college students for a reason....he felt like he was Super Studyman when he was taking them. But, he is happier and more focused in all areas and for longer periods without them. 

[maize]

OP, one avenue to maybe investigate is a tryptophan supplement; many people find it helps them sleep and there is research indicating that at least some types of ADHD involve genes that negatively impact the body's normal metabolism of tryptophan.

 

It is something I have just started to research so I don't yet know what the potential drawbacks of supplementation are.

Edited February 22, 2017 by maize

[kbutton]

We have not had this particular problem with stimulants, so I don't have advice.

 

I did read a bit about the genetic testing for ADHD meds. My understanding is that the tests stratify which drugs are likely to be a better fit and a less better fit, and it's based on metabolism. Since this seems to be a metabolism problem, maybe the testing would be useful to you.

 

Here is the series i read: http://adhdrollercoaster.org/tools-and-strategies/adhd-dna-and-predicting-medication-response-introduction/

 

I think it did a good job of explaining the limits and potential benefits of the testing. It was interesting to me that one of the people who authored the posts is on a combo of meds, IIRC. 

[Targhee]

I'm sorry. It's almost like you get a teasing glimpse of your child at their best - themselves, but also calm and focused. I hope kiddo is happy through it all.

 

I would consider an eval for latent anxiety, and really address any/all sleep issues. They may be exacerbating the ADHD, and the ADHD meds won't help with that part of the problem.

[sbgrace]

Thank you all so much.

 

He says the Ritalin makes him feel calm inside. He describes feeling like he's being run by a motor outside of it. There is marked decrease in both hyperactivity (constant moving, talking) and severe impulsivity on Ritalin. I can tell when it's "kicked in," because he suddenly sits down and starts actually doing the school work that's just been sitting in front of him otherwise. He's all about getting it done. The Ritalin has allowed him to participate in things he just couldn't manage before. It does help--a lot.

 

But it does also cause him to fatigue at some point-then his mind wanders. The short acting does feel a bit like a roller coaster, probably just because it is short acting. He described it to an OT as shifting from red (in his case feeling wild/impulsive/hyperactive) before Ritalin to green (alert, focused) to blue (tired, distracted). I don't know how long, though. I need to pay attention to when the shift happens. It would be helpful to know if the blue is actually peak point or when it's wearing off, if I can figure that out. I'll do that.

 

He does take fish oil, but not a special form or dose and he takes it at night. I can switch that. He's a problem sleeper generally, but we manage with the help of melatonin unless stimulants are still in him at bed it seems. I've thought more about it, and I don't think it's likely he would adjust. We were having such severe issues over months that I saw a sleep med specialist. We found out that we were giving that 2nd dose too late, and fixing that made a difference (there were other things too, but the Ritalin timing did and does matter for his insomnia.)

 

I also plan to ask his doctor about possibly shifting Ritalin dose down a bit. I am wondering if he's getting over-sedated when it fully kicks in. His doctor did mention a genetic test for med metabolism. I can ask about that. I just don't want to go in during this flu season--so many sick kids around our town right now!

 

It's possible (probable) that some of the distraction even while medicated is part of his co-occuring issues. I will need to get help there. Why do some kids get hammered with so many different struggles? Bleh.

Edited February 23, 2017 by sbgrace

[PeterPan]

I would make your data for a few days. Probably just two or three would be enough to let you see what's going on. I know some people are reluctant to do the amphetamine class drugs, but have you looked at Vyvanse? It has the smoothest, most even delivery system. If your data shows that he's having symptoms from the up/down of the meds (which even the xr methylphenidates will), then Vyvanse could solve that. It's a pro-drug, linked to an enzyme, so it totally stops the up/down of the physical delivery systems of regular xr drugs.

 

He's still going to benefit from CBT and EF strategies, even with the meds. I personally would not change his meds until you take data. It will only take a few days. I would take the data, see when it's kicking in, see when he's changing zones (since he can explain it, wow!), and then let the data drive the change. Then, pick a sensible dose on the new med and get him an EF coach or psych who does CBT.

Edited February 23, 2017 by OhElizabeth

[geodob]

Tryptophan was suggested as something to investigate.

Tryptophan occurs in many foods, and we have enzymes that convert it into Serotonin.

Serotonin, is what's called a 'Neuro-transmitter'.

Where its main role, is as a regulator and controller of neuron/ nerve cell signals.

Which controls our CNS Central Nervous System.

 

But an important thing, is that their are 14 different types of enzymes, that produce different types of Serotonin.

Each of which, have different roles in the nervous system.

With their own 'Neuron Receptor'.

Though they do work in combination.

For example, 6 different types, contribute to sleep.

Such as one, that controls our breathing, as we sleep.

 

Another type, controls our appetite, and can also cause feelings of nausea.

 

So that when people talk about the 'side effects' of ADHD medications?

While the medication is aimed at certain 'Enzyme Receptors'.

They can also effect other Enzyme Receptors as well.

Which might effect sleep or appetite?

 

But coming back to Trytophan? 

Taking this as a supplement, can cause an excess amount of Serotonin in our neurons/ nerve cells.

Which causes a loss of control over the signals from nerve cells/ neurons !

So that they can remain 'locked on'.

Where one type of Serotonin, controls our 'blood pressure' and 'heart beat'.

Which can basically cause a 'heart attack'.

 

Though this excess amount of Serotonin, will also effect other 'Receptors' as well.

Causing a myriad of symptoms.

 

So that with taking 'Tryptophan'?  

Their is the risk of an oversupply of Serotonin?

 

Then coming back to Focalin?  

After a neuron/ nerve cell uses Serotonin, another enzyme removes it.

But Focalin can reduce this removal.

So that when one is also taking Tryptophan?

This can quickly result in excess Serotonin in the neurons/nerve cells.

 

Which can result in hallucinations, and what recreational drugs like LSD and Ecstasy actually do.

 

Please forgive my rambling on? Though for the past few months, I've been doing an intensive study. Into the signalling processes that our neurons/ nerve cells use?

Which is a really complex process, and difficult to comprehend?

With Serotonin defined as 5-HT,  and having 14 sub-types: HT1a, HT1b, HT2c. etc.

 

Whilst the current explanations are written for experts.

I really think that it could be made more understandable?

Which could be presented in charts?

 

So that with 'side effects', one could identify the relevant 'neuro-receptors'.

But more importantly, with 'diagnosing ADHD'?

The symptoms could be used to identify the relevant 'Neuro-receptors'.

[Schadenfreude]

I have a child like this. We spent years trying every medicine on and off formulary searching for something that not only worked well, but didn't have a bunch of side effects with it. After we exhausted all possibilities our pediatrician told us that medicine will not work well without side effects for about 20% of ADHD children. He said we can choose between a combination of meds for ADHD and the side effects or no medication. I hope you find a med that works well for him. I just thought you should know that it may take a combination of meds.

[suenos]

I hope your DS is feeling a bit better and getting some sleep.  I'm not sure whether this will be at all helpful to you - 'cause Ritalin/Focalin  do seem to help your DS and maybe it is a matter of titrating to the right dose/timing or finding something to help with the sleep issues (feel your pain there - have a 9yo who has always had difficulty with getting to and staying asleep).  But just in case you never get the stimulant meds worked out it might be helpful to you to at least know about - my DS is on Straterra - it's a non-stimulant - it's actually an SSRI - a more anti-depression, anti-anxiety like med.  This has helped him with a lot of behaviors that were attributed (maybe wrongly) to ADHD.  It has helped somewhat with attention/focus as well - but mostly with overall mood.  Again - I don't think it's your first (or even second or third) bet - b/c sounds like you are mostly concerned about classic hyperactivity and attention - and it doesn't do much for hyperactivity with my guy.  A little.  But not much.  We tried the first-line ADHD meds (stims and a non-stim) and DS had far too many and too severe negative side effects. 

Edited February 24, 2017 by suenos

[kbutton]

I also plan to ask his doctor about possibly shifting Ritalin dose down a bit. I am wondering if he's getting over-sedated when it fully kicks in. His doctor did mention a genetic test for med metabolism. I can ask about that. I just don't want to go in during this flu season--so many sick kids around our town right now.

 

Maybe you could get him to order the lab, and you won't have to go in until the results come in. It will take some time to get the results back, though I don't really know how long. I guess the lab could be crowded, but you might be able to ask about their slow times. 

[Princess Ariel]

Ds takes the generic of concerta.  It's longer acting without the drop off  when it wears off.  He's been on several that were not a good fit for him, is actually at a lower dose, and we've finally seen good results

Sorry if it's already been mentioned as I didn't have time to read all of the posts and suggestions.  Good luck to you! :001_smile:

[Mom28GreatKids]

Have you tried Concerta (long acting Ritalin) with a booster of short acting in the afternoon. This seems to be the magic bullet for many, and ds's dr.'s goal for him when he gets big enough for the XR. Right now he get 5 mg of short acting at 7, 2.5 at 11-12, and 2.5 at 3-4. It is working well, but a pain to get it in him. Sometimes we skip the 4 pm when we don't have evening activities. He actually sleeps worse on these days. So upside down but it is the case for ds. I hope you figure something out that works. It has been a game changer here.

[Mom28GreatKids]

I would make your data for a few days. Probably just two or three would be enough to let you see what's going on. I know some people are reluctant to do the amphetamine class drugs, but have you looked at Vyvanse? It has the smoothest, most even delivery system. If your data shows that he's having symptoms from the up/down of the meds (which even the xr methylphenidates will), then Vyvanse could solve that. It's a pro-drug, linked to an enzyme, so it totally stops the up/down of the physical delivery systems of regular xr drugs.

 

He's still going to benefit from CBT and EF strategies, even with the meds. I personally would not change his meds until you take data. It will only take a few days. I would take the data, see when it's kicking in, see when he's changing zones (since he can explain it, wow!), and then let the data drive the change. Then, pick a sensible dose on the new med and get him an EF coach or psych who does CBT.

Yes on the data. Dr. made me do 3 weeks of behavior/ eat/ sleep logs before we could change the first dose. We took very detailed data of every behavior, everything he ate, how fast he fell asleep, if he woke, how long he slept. It was really good and told us tons. Especially when we changed doses and things settled down. It was quite a ride, though.

[Ottakee]

Another med to try is an older one...Dexedrine

It has worked very well here and is longer acting buy you can take a 2nd dose.