coming off stimulants - what did you see?

[agee]

Hey everyone!
Today was my son's 1st day in 3.5 years with no stimulant. We had been planning to take him off anyway (psychiatrist suggested dropping Vyvanse once we started to see how Intuniv works for him) but since my lovely husband neglected to tell me that he would need a refill over the weekend...and dr. doesn't work over the weekend to write the script...we started today.
The Intuniv isn't doing much, as far as I can tell. I understand the importance of not changing more than 1 med at a time but we needed at least 1 day w/o the Vyvanse so that he'd have something for school on Monday.
Here is what I see: he is his typical foul self, but tired. Slower. More down. I guess all to be expected, since stimulants are, uh...stimulants. But IF the stimulant had been doing its job to control his "ADHD" (in quotes now as I feel this is a misdiagnosis) wouldn't I see less impulse control and more impusivity? Well, I don't. If anything, all zoom-zoom behavior is gone.
Very interesting.
I think we'll stay off for now.
Dr's appt Monday.
Neuropsych exam in January!
I'm really, really beginning to think this isn't ADHD but something more like bipolar or cyclothymia.
Just wondering what you all saw when you took your kids off stims?
A

[Marguerite]

Sometimes you can get rebound when you come off the stims, but doesn't sound like it in your case. The "typical foul self" can be worsened because the impulsivity is also of the mouth. I just overheard GFG3 (whose morning meds are not on board yet) get mouthy with his dad for putting someting on the chair right where GFG3 wanted to sit to eat his breakfast - we're getting ready to go out, DH & I have been packing our equipment and we have to put it somewhere! GFG3 is at the same time trying to do something-or-other on the Nintendo Wii which of course is far more important than DH packing his tools or me packing the picnic hamper!

What can often happen - in the time your child was on stimulants, he learns to adapt, he learns that it doesn't have to be zoom zoom, and there can be a roll-on effect with some kids that for a while helps them keep their impulsivity in check.

Certainly stay off and see how he goes, do make sure you write it all down in detail for the diary, then give a copy of your minutes of his behaviour over the next few days, to the doctor. It's all valuable information for the doc.

What we always have noticed off the meds - much more tired (thank goodness - he's closer to 'normal' in terms of sleep instead of always awake and active) and "the munchies". He eats more, is less fussy with food (perhaps because he's hungrier). It's the removal of the appetite suppressant effect of the pills.

You may be right about the dx being wrong, or it may simply be that being on the meds has helped him learn better self-regulation. Keeping good notes on how he goes will help doctors see the issues (good, bad, indifferent).

As for DH and his SNAFU - it's these serendipitous events that give us so much valuable information on our kids!

Marg

[Wonderful Family]

You will need to give the Intuiniv a few weeks to start working - similar to an antidepressant; my GFG is just starting on it this week as well. We are starting at 1mg/day for the first week, then 2mg the second and then working up to 3 mg.

Tenex (Intuniv is just an extended release formulation) has never done that much for my GFG; but pdoc wanted to try this version just to see; we're extremely leery of going to stimulants again.

Pdoc told me to give the med as I saw fit (morning or evening) - and it appears it is mostly given in the in the morning. My GFG is great about taking his meds; but he hates morning meds and will constantly skip them (constant battles with Tenex). The half life of Intuniv is 24 hours - this just means how long it stays in the body/blood stream, so, in theory, there should be no problem taking it at night. GFG has also always had problems with Tenex making him extremely tired and very susceptible to low blood pressure; so I thought starting it at night for the first few weeks would help his body to adjust more.

Good luck with it. Let us know how it goes; I know this is one drug that is being aggressively pushed by the manufacturer, and the clinical studies look so-so. But then again, it is designed mostly for the kids that are very oppositional, so it may be a great drug for kids that are not BP in combination with other ADHD meds; only time will tell. I’m particularly interested in hearing about other’s experiences; we’ve maxed out the Lamictal for now which has proven to be the best med for GFG.

Regarding the stimulants, they only stay in the system for 12 hours or so, so you shouldn't see much beyond a day or two. Of course, with my GFG, they make him manic and can destabilize him with the BP and start off a significant round of issues that take their own time to work through. With my PC, who has ADHD and takes Concerta, it's 12 hours in and out as expected.

[agee]

I should have added this about the Intuniv - we're at the end of week 3, so we're on 3mg. After the dr. on Monday I guess we'll go to 4.
And my son totally fits the profile for being helped by Intuniv. Oppositional with a capital OOOOOO!
All we've seen is less random noise, but not that much less.
This past month...and actually his whole life...he's just been rude and irritable and nasty. And sometimes overactive and self-stimulating and extremely noisy. But always rude. No joy. He doesn't laugh, except AT someone. I can count on 1 hand the number of times I've heard him belly laugh since he turned 2. It's sad. I'm hoping eventually we'll find a pill for some joy.
A

[smallworld]

A few thoughts for you:

Our pdocs (and we use three different ones for three different children) have told us repeatedly that reaction to meds (positive or negative) is not diagnostic in and of itself. So if your GFG reacts negatively to stimulants, for example, it doesn't necessarily mean he doesn't have ADHD. According to Parenting Children with ADHD by Vincent Monastra, a full 15 percent of children with ADHD respond negatively to stimulants and need a different type of medication to treat their ADHD symptoms. By the same token, however, if your child reacts negatively to stimulants, it could mean the dx is something besides ADHD.

Even though stimulants are in and out of the system within 12 hours or so, when my son first stopped taking Concerta after 1.5 years, he was revved up for about 3 weeks until he settled down. It took him that long to return to baseline from having stimulants in his system. So there's a chance your son may not return to baseline for a while. You just may need to wait and see, especially given that he stopped two meds at once.

A neuropsych evaluation will help sort things out, especially in terms of ruling in or out various childhood learning and autistic spectrum disorders, but a psychologist cannot dx bipolar disorder. Only a child psychiatrist can make that dx.

Hang in there. January is coming.

[crazymama30]

FWIW, I have forgotten gfg's patch and I have seen no effect other than he is really super hyper and impulsive.

[LittleDudesMom]

Even though stimulants are in and out of the system within 12 hours or so, when my son first stopped taking Concerta after 1.5 years, he was revved up for about 3 weeks until he settled down. It took him that long to return to baseline from having stimulants in his system. So there's a chance your son may not return to baseline for a while. You just may need to wait and see, especially given that he stopped two meds at once.

I had the same experience as smallworld when my gfg was younger and on a higher dose. He would have about 10 days or so at the beginning of the summer where you could almost look in his eyes and see the question "what should I do now?", and "what's going on?" He was actually more disrespectful vocally and back to being a jumping bean. It took that 10 days or so for him to adjust being without the med. It also took me reminding him daily, "gfg, remember you are not on your med...calm down, think about what you are doing...."

He is older now and just takes a fairly low dose of vyvanse (30mg) for the focus issues - he only takes it on school days. The only thing I notice on the weekends or the school holidays is that he eats more!

Hope you see some positive changes with the new med. Give it some time.

Sharon

[MidwestMom]

From long experience both taking meds myself (thirty years) and with my son, I have found that meds and the diagnoses are often both a crapshoot. Trust me, I wish doctors had blood tests, but they don't. And they are giving you only their best guesses for what is available NOW (it changes constantly in the psychiatric field, which is growing). My policy, again from my own experiences, is that if a med isn't working at all or is making me or my child worse, I discontinue it. Why put a child on any medication that doesn't give an obviously good response?

If you don't see obviously good responses to medication, whether or not he has ADHD, I'd discontinue. My son was on meds for three years and he didn't really need them as his diagnose was incorrect (wish I could say this is uncommon, but it's not). He grew obese on the drugs and is still overweight 4 1/2 years later.

Good luck, whatever you decide to do!!!
what to do.

[agee]

So - he slept for 2 days and was lazy and chill and then - whammo! Just in time for school he is wild and wide-open!
His poor, poor teacher.
But here's a good thing - he is not as mean and low as he's been for a long while. He even laughed today at something silly I said. It has been forever. So I'm willing to put up with this for a while if it means he'll lose some of the black cloud...
Waiting to see what it'll be like in a couple of weeks.
A

[smallworld]

Stimulants can depress over time. That's what you may have been seeing.