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Post by geewiznit on Jan 11, 2004 3:24:14 GMT -5
Okay, I'm just getting angrier and angrier as I read more and more posts about kids developing tics from stims. It's glaringly apparent that stims cause tics in many, many kids, yet the "official" word from the drug companies and most docs is that the tics are not caused by the meds, but that the meds somehow just reveal a preexisting tic that was hidden! (I may be mistaken, but I don't even think tics are listed as a side effect in the package inserts.) That makes as much sense as saying that a hair product isn't making your hair fall out, it's just revealing a preexisting scalp!
My daughter developed a throat clearing tic after we increased her dosage of Adderall XR. If it had not been for a message board, I would never have known that this was a side effect of the med, and I would have been dragging her from the pediatrician to the allergist to the ear nose and throat specialist and back again, without even considering that it was the Adderall. We stopped the Adderall immediately and the ticcing stopped within days. How sad that we get better medical advice from strangers on the internet than we do from our own physicians and drug manufacturers!
Okay, rant over!
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Post by Brenda on Jan 11, 2004 7:47:30 GMT -5
I know.My daughters"specialist" told me the same thing.He gave her a strong antipsychotic med to stop the tics.She is only 5 years old.We stopped the Concerta yesterday and are going to go back to Strattera.It helped her behavior when she took it a few months ago.It didn't help her attention that much but I'll take I'll the help I can get from the Strattera just so I don't have to see her ticcing all the time from the Concerta.I was getting worried that the stimulants were causing a tic disorder that would be permanent after we stopped them.I understand what you are saying.Why don't the doctors and drug companies just admit that the stimulants do cause tics.Brenda
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Post by AnneM on Jan 11, 2004 8:25:07 GMT -5
I agree too ... the drug companies should DEFINITELY be letting us know about the side-effect of tics ... as you say geezwiznit from the board and not (as should have been the case) from your own doctors or at least from the manufacturers! ... Same for me ...
I know we are lucky that Concerta hasn't caused any noticeable tics in my son ... (except he does seem to bite his nails more when on Concerta - but in fact maybe that is a tic??) ...
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Post by NativeLI on Jan 11, 2004 8:54:32 GMT -5
I must disagree with the drug companies not letting us know about tics...My son was diagnosed with Tourrettes Syndrome prior to receiving any stimulants. Prior to beginning meds on my son, Everything I read and researched about stimulants said that tics were a possible side effect. Every warning label on each leaflet contained with my sons meds always warned against tics. Possibly I noticed it more because it was a problem with my son, but it wasn't hidden from me in any way. Possibly your doctors aren't giving you the appropriate materials contained with the medications.
I'm glad my sons tics started prior to the meds. I would have blamed the meds for his tics. My doctor said that about 75% of kids with TS also have ADHD, so they are linked somehow but it hasn't been proven how yet. My sons ADHD was definitely noticeable his entire life, however the tics did not start until age 6 1/2, the age alot of kids are finally diagnosed and begin meds.
I'm definitely not saying that stims don't cause tics, because I know in my sons case Adderall caused his tics to become much worse, but on Ritalin they were the same and on concerta they appear to be diminishing.
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Post by Jorgy on Jan 11, 2004 15:24:45 GMT -5
I thik that there needs to be a better explaination of tics presented in the side effects. I never thought that picking at lips and nose picking were tics till I came here. Involentary movements is too vague in my opinion. Sue
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Post by geewiznit on Jan 11, 2004 18:19:32 GMT -5
Not to belabor the point, Native LI, but here is the side effects section from the official patient info for Adderall XR:
"Nausea, stomach upset, cramps, loss of appetite, diarrhea, constipation, dry mouth, headache, nervousness, dizziness, sleep problems, irritability or restlessness may occur the first several days as your body adjusts to the medication. Other side effects reported include twitching, sweating, flushing, muscle tremor, change in sexual desire or ability. If any of these effects continue or become bothersome, inform your doctor promptly. Notify your doctor promptly if you develop: chest pain, rapid heartbeat, mental/mood changes. This medication causes dizziness and can affect alertness. Use caution driving or operating machinery while taking this medication. If you notice other effects not listed above, contact your doctor or pharmacist."
The only thing I see even remotely related to tics is "twitching", and that describes only some tics. Perhaps you were given something prepared especially for Tourette's patients. Most of us are flying blind on this issue. Interesting to note that according to the patient info, even the common side effect of loss of appetite supposedly lasts only for a few days, and we know that's a lot of nonsense, too. Seems like the FDA is dropping the ball on this. They approve the package insert when a drug is introduced, but I guess there is no requirement that they revisit the text based on actual patient experiences over time. Since stim-induced tics can become permanent, I think this is a really serious issue. I'm not sure how responsible to hold the docs. I suspect that each one individually gets an occasional report of ticcing and dismisses it as an aberration, but you would think they would share experiences at conferences and the like and see that there is a clear pattern.
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Post by Honeysmom on Jan 12, 2004 12:00:58 GMT -5
I also stopped Adderall XR recently due to more than tics, but I do think Honey was developing one.
It is also possible that some of these are not true tics. Some may just be a habit. Kids do go through phases where they develop habits. I know all of us did as kids, and think Honeys sniffling is a habitj b/c it did not go away after we stopped the Adderall.
I also agree with Sue. The term tic is very vague. What exactly consitutes a tic? That can very from kid to kid.
In any case, the info I received from the doc's and pharmacists also never said anything about the possibility of tics.
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Post by catseye on Jan 12, 2004 12:10:28 GMT -5
My sd has always had this thing that we still havent determined is a tick medically anyway I suspect it...
Sd does this low "motor" sound in a monotone (no ups or downs, just one grrrrrrr tone)... She did it way before medications when she was barely even talking... It is always when she is concentrating on something...
I havent seen any evidence in *HER* case of the adderall xr makeing it worse... We must remember that medication affects everyone differently that is why I emphasized the *her*... I am sure it can be different for some...
cat
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Post by eaccae on Jan 12, 2004 17:02:29 GMT -5
Well - in the stupid ad for adderall in the magazines - they do list tics as a side effect. But of course - as you have pointed it out they don't list it everywhere - which is a big shame on them. I think Jorgy is right - in that we don't necessarily "know" what tics can be. Luckily for DS he hasn't developed any tics (he is on stims). But a relative of my husband - his son is taking adderall - developed tics and is now on adderall and another medication for his tics and another for his anxiety. And a good friend of mine - her nephew also was diagnosed with tourettes before being diagnosed with adhd. Unfortunately the stims really worsened his tics but I believe he has just switched to strattera. So it is important for us to remember that yes, tics can most definitely be a side effect of stims. But that yes - tourettes often does exist with adhd - and the meds can worsen the pre-existing tics. It plays both ways.
I, for one, have always known that tics were a side effect of stims but I do agree that there needs to be more literature out there on what kind of things to look for. And unfortunately not enough doctors are explaining the side effects to us as parents. (Mine did - so this isn't a slam against pediatricians as a whole).
Rant away!! I have no love for the drug companies. (I know some things - friends that have worked for certain drug companies and certain drugs that have been recalled) - there are many things drug companies bury in fine print or don't disclose! If we don't get angry then things don't change!
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Post by swmom on Jan 12, 2004 18:18:12 GMT -5
I think there is a lot the drug don't say. I called Lilly the other day to ask a question about Strattera and it was like pulling teeth to get a straight answer out of them.
They've been trained to skirt the issue. I felt like I had to keep cutting them off mid-sentence to repeat what it was I needed to know! Beware of what the drug companies say. Look at your child.
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Post by losingmysanity on Jan 12, 2004 20:55:45 GMT -5
My son also had what we called travelling tic's prior to starting any med. We know now that they are called "transient tic's". They have been aggravated it seems by the med's, so we are using low dose of meds.
Both ritalin and concerta have been tried, but then concerta is just a version of ritalin that is on a 12 hour time release anyway.
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