Focalin XR has debuted

[camismom]

I went today to get Cami's presc of Focalin filled. She takes the short acting kind as needed for afternoon boosts on heavy homework days. The pharmacist read the presc wrong though and thought it was for Focalin XR. This of course prompted a conversation about how the XR form was only recently released. I know there are people that have discussed this in the past so I thought they'd like to know. I'll be interested to hear the success and/or failure stories of this new med.

[milesofsmiles]

Nate has always had problems with the XR type meds, either extreme headaches, or upset stomach. So he takes the several times a day meds. Our new Dr. said that there was an XR that came out in October. When we asked about if it would be something to consider for our son, she said that if the regular was working, wait and see. She said she wanted to see a lot of other people on the medicaiton before trying it with her patients. Being new, she felt the side affects are not known over a large enough population, and the effectiveness of the med has not been proven yet.

So bottom line, we were told to wait and see.

Miles

[camismom]

Cami seems to be doing well on the Concerta so far... so I'll leave it her be for now. I just know some people have said good things about Focalin vs. other stims. as far as side effects and such. I hope we can get to know some people through our site in the future that can give us more insight.

[raingirl]

Hi,
I'm new to this board and to the whole medication "thing," but we have just started my son (age 8) on Focalin XR and it's the first thing so far that has shown any promise.

We started him at the beginning of the summer on Strattera, which had very mild, if any, results for him. Then the doctor gave us a trial coupon for both Adderall XR and Focalin XR. We began with the Adderall since that is what I was the most familiar with, adding it to the Strattera per the doctors instructions. Even after working up to 30 mg/day of Adderall with 40 mg/day of Strattera we still saw very little change in our son's hyperactivity and impulsitivity.

Starting about a week ago, we began him on the Focalin XR (10 mg), along with the Strattera. It's the first time we've seen him this calm and liveable. For the first time we have some hope that something will finally work!

That said, it definitely seems to affect his appetite (doctor says this is usually temporary--I hope so), and he's been getting carsick a lot. However, on our family vacation recently (with no Adderall or Focalin, just Strattera), he also got carsick a lot, so it may actually be the Strattera that's causing it (had very little side affects with Strattera before this). So . . . the jury is still out as to what is making him carsick. The good news is the rest of the time, he's not getting sick to his stomach.

So, I know this is far from a good answer--just sharing our short experience so far. I'm hopeful, but we still have to work out some of the bugs! I'm also curious to try removing the Strattera, once we have things working well, to see if he really needs it.

I think the Strattera is supposed to make the Focalin effects last longer and the "coming off" more smooth, but our son is getting pretty squirrely again by about 6:00 or 7:00 p.m. anyway. Maybe without it he'd be worse, though?!

Thanks all,
Raingirl

[Linda]

Hi Raingirl Thisis interesting. Keep us updated on to whether the med Focalin is working for your ds.

[cheermom]

how long is the focalin xr suppose to work

[raingirl]

Hi Linda--I will try to keep you posted as we learn more.

Cheermom--Our doctor's literature says Focalin XR usually lasts 12 hours. We don't feel it's lasting that long. We only see obvious good results about 8, maybe 9 hours; but I admit we're still in the observation stage.

This is something I'll ask our doctor when we go in a couple of weeks, but has anyone ever used an XR formula in the morning, then given just one dose of the non-XR formula after school? I have no idea if this is safe or kosher. My dh and I were just wondering. On the school-year schedule, if Focalin XR is lasting our son about 8 hours, he should be coming off it just as he's needing to do homework or go to Cub Scouts, etc., after school, aargh!

Thanks all,
Raingirl

[camismom]

Thanks for posting the info on this Raingirl! I really did want to hear some personal experience stories with it. I hope your son finds continued succes with it. As far as giving him a "booster" of the non-XR kind in the afternoon, that is absolutely ok and quite common. My dd has a prescription bottle of short-actiong Focalin she takes in the afternoon when she has a lot of homework to get her through the "crunch" time of doing the homework and making nightly swim practice. She currently takes Concerta during the day. Just make sure you give it to him early enough to not interfere with bed time.

Please continue to keep us posted...

[raingirl]

Thanks, camismom! I should have asked this sooner--but about how long does regular Focalin last?

Thanks loads,
Raingirl

[Linda]

IF IT IS LIKE RITALIN...PROBABLY 3 TO 4 HOURS....SOMEONE CORRECT ME IF I AM WRONG

[camismom]

You are right Linda -- "regular" Focalin lasts between three and four hours. It is just right for getting Cami throu the evenings with homework and even focus at swim practice.

[pink]

Hi- I just wanted to tell everyone my sons very scary response to focalin xr.

Brief history- my boys are 5 and 6 and both have adhd and odd( both have had complete evaluations and diagnostics to diagnose these disorders).

My younger son was taking metadate and was having some problems with the 20 mg not being enough and 30 mg being too much so his doctor decided to go with focalinxr.

Last Friday was his first day taking it. We were to start on Friday with one 10mg and move up to 20mg on Saturday. Friday was a rough day at school but nothing unusual. Saturday he awoke and was given his medicine at 7 am and with in an hour he was full blown hallucinating.

It was the scariest thing i have ever seen in all my life. My poor poor son really truly believed there were bugs crawling all over him and that they were biting him and he wouldn't let myself or his brother near him for fear the bugs would attack us also.

After calling the doctor at 8:30 am we were told to give my son a dose of his brothers risperdal which is supposed to help with hallucinations. However for four more hours my son kept at it. Another call to the doctor, another risperdal, and four more long hours and he was almost ok. Albeit he was horrified at his experience, as was I.

Now, I have had some dealings with his doctor( hes been both of my sons doctor for some years now) and i have never had a problem trusting him with the medications he chooses. But so help me i will never again let MY son be put on a medicine that i am told is brand new. Not supposed to have as many side effects we were told? Well it may be a very small percentage of kids that this happens to and it may be very helpful to some children, but i encourage any parent to research any and all new medications first and don't make the mistake i did by letting my little boy be a guinea pig for a "brand new medicine". And if this happens to your child on any medicine be sure to report it to your doctor and your pharmacist- these reactions may or may not happen in studies but very well could in real life.

[Linda]

pink and welcome!!! I think I would find another doctor!!! I t is my understanding that you have to fix the ODD before you can the ADHD.

[AnneM]

pink a big and welcome to you!!

What you are describing must have been extremely frightening for you and your ds!! ... Thankyou for taking the time to tell us about this ... please let us know how it goes with your ds ..

However, I just want to also remind everyone that pretty much every single medication AND natural alternative in the world can have an adverse reaction for a small minority .... In fact exactly the same goes for plain ole' FOOD ... of all types .. !! I have a friend (and she isn't the ONLY one I know but she IS in the vast minority!) who just has to eat a prawn and she collapses ... her chest goes brilliant red and her face swells up ... and that is just with a simple, humble prawn ...

Soooooo .... my reminder here is that the vast majority of us can eat a prawn WITHOUT an adverse reaction and in fact we more often than not ENJOY it .. Medications (AND natural alternatives) are just the same ... there are some horrific stories for pretty much everything ... but we mustn't forget the vast majority who often benefit from the same thing that others find impossible...

and at the same time maybe it really ISSSSS tooo early in the day to know the full picture of Focalin XR ...

Pink .. I am in NO WAY trying to belittle what you are saying ... This is a story that NEEDS to be told .. and OMG it must have been soooo frightening!! THANKYOU!! ... Please keep us posted...

[camismom]

Thanks so much for sharing that frightening experience Pink! I was looking for info for jus the reason you mentioned...this drug is brand new so obviosly still working thru the kinks. Unfortunately your family had to live thru one of them! I'm sure you were indeed horrified and your poor boy! I had a similar horrible experience with Cami on Adderall. It was the first med she was put on and it only took two days to see it wasn't the med for her! I hope your son doesn't EVER have to go thru something so frightening again!

Now, Anne, I have to ask....what's a "prawn"? LOL