Possibly starting a med (focalin) trial. What to expect?

Haven’t tried focalin but we’ve tried other stimulants. Typically you should see some improvement within a couple days and more after a week or two. When my son tried Adderall he complained because he was writing too much. :) His thoughts were just coming more easily and he was getting them down faster. Unfortunately he had to stop taking it due to side effects.

http://www.pharma.us.novartis.com/products/name/focalin.jsp this is information on focalin from the maker’s web site.

Hi, my name is melissa. I was actualy searching the internet for new studies on focalin when i came across tis site. My son who is 10 years old, was “diagnosed” with ADHD about 1 year ago. Since then we have been on a rollercoaster rides of medication for him. First it was concerta then straterra, then adderall, an now focalin. We went through changing the doses of all othe medications until we came to this one. Right now he is taking focalin XR 20 mg 2 times a day. Seem like a bit much? It does to me. At frst I thougt, wow a mirace has hpened, my son is doing so much better in school, and at home. but then i remember thinking that way with the other mds. now, i want him off of it!!!! i dont think there has been eough long term reaserch studies in children with focalin. This past month I’ve noticed his grade slipping dramatically, hostility towards myself and his 8 yar old sister, agression, and just a lack of anykind of motivation. He ha started wetting the bed all over again, and its almost worse than it was before we went to medicating him. Also at my work, i know of a few parents who are switchin medications from focalin because they are having the same prblem. I’m no sure what medication is righ, now. were going to try nothing for now. if i cold go back 8 onths ago, i never ever would ha put him on this medication.
I hope this helps you a little, and sorry about all the typos my keyboard is acting up!!! :lol:
fell free to email me if you have any questions. [email protected]

Melissa, the kind of things you are describing are side effects of stimulant medications that doctors often don’t warn us about. One thing you might want to do is get a more thorough evaluation to determine if it is truly ADHD or if there are other issues going on that have similar symptoms. There are a lot of LDs that have similar symptoms as well as other psychiatric issues that can look like ADHD.

My son can’t tolerate stimulants but only has ADD/Inattentive Type and Dyslexia. He has found some supplements and behavior mod that has helped him. He did not have any mood issue except while on stimulants and we were able to rule out other issues with testing.

My dd, on the other hand, had much more severe issues even before med trials with stimulants. The stimulants, however, triggered worsening symptoms which we were not able to get under control until she was properly dx’d with Bipolar. The symptoms of hypomania and mania are very similar to ADHD and can be difficult to separate. She also has complex LDs which look a lot like inattention.

I hope you find some help for your son and your family. ((Hugs))

Have you seen this site:

www.focalinXR.com

I can’t offer anything else except best of luck to you, whatever you decide!

I strongly suggest you look up this medication on Medscape (part of Web MD) or some other pharmacy site. They will give you objective information about side effects and intended effects, appropriate dosage ranges and the expected time of response. I would also log behavior before and after starting the medication, including some things that might or might not be obviously connected in your mind, like mood, behavior problems, level of social interaction, etc. I have heard commonly that the side effects may be delayed, while the positive effects appear to be very quick, almost immediate. In particular, watch out for sleep loss, appetite loss, or any significant mood changes, including aggression, anxiety, or depression.

The most important thing is to know what you are hoping to accomplish by giving this medication, and how you will evaluate whether or not that benefit is accomplished and is worth whatever the costs in side effects.

Hope that is helpful!

http://millermom.proboards23.com/index.cgi#general

a good site for information on meds and alternatives.

the mom’s there do their research.

another site where all this is discussed is:

http://www.net-haven.net

peace,
marge

Thanks for the links, Marge. I just looked at the first site and liked it a lot.

Es,

I’m glad you liked the millermom site. It really is a great place for information.

I hope you also get to Net Haven! It is a real time chat that several of the posters here also hang out.

We’d love to have a chance to meet you.

peace,
marge
http://www.net-haven.net

Just thought you’d all like to know how it went:

we started the trial on sunday of MLK weekend. A very low dose. My son promptly sat down and cranked thru his math homework. He’s a good math student, but a slow procesor. He said “my brain is working faster”. His words. I had given him very little information about what it would feel like, but he was expecting to be more attentive, not faster. The second morning he wrote a paragraph for his language arts class that his teacher later described as “far and away his best work”.

We saw no rebound, or mood changes.

Unfortunately, the stimulant also stimulated his tics which are pre-existing , but normally very very minimal. After the 3rd day we decided the tics were too severe and distracting to continue.

My son (almost 12 yo) liked the effect of the meds. He is a inattentive kid, not hyperactive so behavior is not really the issue. He liked being able to control his focus. He was less frustrated when writing.

I’m not sure what we can or will do next, but thought you’d all be interested in the feedback.

How disappointing to find something that helps your son but can’t be tolerated. Is Straterra a possibility for him? I don’t know much about it really except that it is a different sort of drug than stimulants (and thus might not have the same effect on his tics).

Beth

I know! I really feel for him…. its like he had a brief moment of clarity and then we took it away.

our neurologist wants to speak with me about straterra. I’m less enthusiastic about it simply b/c its a bigger commitment in my opinion. (slow onset, takes weeks to ramp up etc etc). But on the other hand, its a good time to try something like this. Everything is going so well for DS right now that we could tolerate a few side effects for a few weeks … and if it doesn’t work or has undesirable effects we’ll quit. I’ll have to see what our neuro has to say for himself….. will keep you posted!!

I can’t blame you for being reluctant. I know that Straterra made a big difference for my cousin’s 11 year old daughter. She is inattentive, not hyper at all, and has gone from just sliding by to being in gifted classes. She was the classic underachiever (not LD though).

Beth

Sorry about that, KarenN. My son can’t handle stimulants. He was the best on Strattera, but he still had behavioral issues, lost a couple of pounds, had trouble sleeping and complained of stomach ache. Dexedrine agitated him a lot. Exactly one Concerta dosage had him running around, screaming and crying like a banshee and brought forth a scary lip-twisting-squirming tic that I frankly didn’t take very well. I was frightened. I kept telling him to stop, and he told me he couldn’t. So I understand about the tics.

Strattera may be worth a try, although it is fairly new on the market.

My son has done the best on Risperdal (a mood medicine), although he gets sleepy easily. Work and behavior have improved, but we have a ways to go still.

BTW Steve, your comments do point to the need for different but effective approaches to education. There should be more alternative schools, if not alternative teaching methods/classes in all schools without the need for IEPs, and it would be great if more people could homeschool. I wish I could!

We decided to go ahead and try straterra. He is in such good shape academically and emotionally that we figured he could tolerate a few weeks of ramp up side effects, should that happen.

We decided to do it after he turned to us this weekend and asked if he could take his medication before doing his homework. I’m realizing that the processing speed issue is huge for him. Its not just inattention in the classroom (which he is more unaware of) but the pace that he works at. Which is really a life problem. The world is not untimed!

Keep ya posted.

Hi there from Texas. I’m actually new to this forum but I was searching and ran across the Focalin issue. My daughter 8 now was diagnosed with severe ADHD at the age of 5. We tried pretty much everything(within reason). Finally we tried Adderall XR 15mgs. It worked for awhile during 1st grade but half way through the year we had to increase the dose to 5mgs more. With that came the tics(constantly)but the pros of Adderall still out weighed the cons. Unfortunately in the summer just before 2nd grade the tics got really really bad. We took her to a neurologist and he diagnosed her with mild Tourettes. We took her off the Adderall for 2nd grade but she was going down hill fast. Went back to the neurologist and he put her on FOCALIN XR. He told me that 10 Mgs. of Focalin would give her the same benifits as taking 20 mgs of Adderall (with the focusing, attention span, not keeping still etc.) but only gives her 10mgs of the medicine that irritates the tics. She’s been on it for almost 2 weeks and I have have seen a rise in her grades(some days are better than others)and the teacher has told me she is doing a great deal better. The social issues are still there but nothing is perfect. She still gets the tics but definetly not as much as she did on the Adderall. Anyway thanks for listening. It’s nice to share issues and vent to people who know what is actually going on.

Suzie

Here’s the update:

we started a straterra trial about a month ago. The school started reported substantial improvements in attention, staying on task, following through, asking appropriate questions, eye contact, participating etc within 2 weeks. We just got him up to the target dose this week.

And we’ve had zero side effects. He is still him - a dreamy spacey kid who has occasional tics. At home we see almost no change, which our neurologist said is great. (the idea being that we dont’ want to see personality or mood changes….)

so we plan to continue for now!

Karen,

Wow, that’s amazing! I am so happy for you and for him. It seems you solved a piece of the puzzle.

Beth

Its odd though. Since I’m not seeing change at home I am relying on the school. I totally trust them, but its hard to extrapolate how this might translate in the real world (ie in a mainstream school setting. ) But we have time to sort that out. One interesting piece of data will be when they do their standardized testing. They always do it timed and untimed. He has a huge gap and I’m very curious to see if the gap closes while he’s medicated.

Karen,

Did the school know you were doing this?

When you say it hasn’t translated to home, do you mean that you don’t see difference in doing homework? I would think you would see something there even if he is same dreamy kid otherwise.

Beth

Good questions!

They did know about it. I was somewhat skeptical about telling them up front, but in the end felt that they needed to know. When we tried Focalin they were very honest about the side effects they observed, even in light of the significant improvement they saw in his writing and spelling. They are so attuned to his performance that I do feel they can give me good feedback.

Its hard to say with the homework b/c they seem to be giving more out lately! the 2 days he was on stimulants and doing homework I could see how focused he was, and I could see that he was typing faster . And when I read his work I could see the difference in quality. With the straterra I ‘m not seeing an improvement in speed, but the quality seems good. Its just not as dramatic.

My theory is that the meds are giving him control over whether he drifts off, not that they prevent the fantasizing. At home there is no reason to stay alert in the same way he might need to at school. But I would like to see the empirical data of his year end testing before deciding if this is going to be a long term solution.

Karen,

Sounds to me like stimulants do more for him but, obviously, he can’t tolerate them. The question then is whether there are enough benefits to Straterra to justify him being on it.

Of course, I haven’t told you anything you don’t already know!

Beth

Yup that’s it. Of course its worth mentioning that the improvements on the straterra were seen before he even hit his target does. Our neurologist thought this was a very positive story , and that we should continue before concluding if its worth doing or not. We’ll see!