Hi.. My son is almost 12, diagnosed ADHD 3 1/2 years ago. Here are the meds he has tried: Concerta 18 was not enough, 36 made him very dark and irritable coming off, he had a bad reaction to Adderall, Ritalin LA wore off after 5hrs. We found success on Daytrana patch 20mg. Caused bad tics and fingernail picking. Dropped to 15, anxiety a little better. Stayed on 15 for two years. Only bad side effect was total non appetite. Started Tenex .5 in morning in August. Improvement. Started Intuniv alone in November. After a week added patch back in. Starting in February of this year went up to 20 on patch with Intuniv. Lots of problems with focus and attitude, mean, aggressive. Went up to 25 on patch(had 10s and 20s), totally zoned out. Went back to 20 and Tenex 1mg morning, 1mg after school in May just wanting to make it to the end of the school year. Took him immediatly off of patch after school was out, not working effectively anymore, not willing to go up in dose. Went to DisneyWorld and gave him 10mg Methylin with 1mg Tenex in the morning while on vacation, worked great! Best part was it did not affect his appetite! Told psychiatrist who said he could take Methylin twice a day during summer, and we should try Focalin XR for school year.
My question...the main reason to use Focalin XR is once a day dosing, won't have to take at school. But, I am so hesistant to change him, he seems to be doing so well right now, although he is not in school, doesn't need as much focus. I just don't know, though, if he should try taking his second Methylin at school. He has never had to do that before. He will be in 7th grade, and I am planning on talking to school nurse this week to see what med procedure is.
Any advice? I am also not sure if the extended release meds work as well for him, but psychiatrist said that Focalin XR is lasting longer. I also don't like reading about the side effects....
Thanks!
Heather
Bless your heart and yours son's! You guys have really been through a lot of meds! My daughter, ten years old, takes Focalin XR. She has been on it for several years. The main problem with it is that it causes a lot of nervousness and anxiety. Also, she eats next to nothing when she is on it. About a month ago, we went off the Focalin and tried Intuniv to get her off of the stimulant and to try to get rid of the anxiety. It didn't work. 1 mg did nothing and 2 mg made her too sleepy and out of it, which did not go away. Then we tried Tenex at night for sleep and anxiety, but she did not sleep. So we have gone back to Clonidine at night. So the Focalin XR has been OK for us and has helped her function pretty well at school. We go back to the doctor next week and he may want to try something else for anxiety. I would really like to try to get her meds straightened out before school starts. Good luck to you and your son. Maybe you will be successful with the Focalin. If you decide to try it, I hope so. I know how hard it is. Hang in there!!!! 
Hi Heather,
We have just started our med journey this past December, so compared to
you we've not been through nearly as much. My son just turned 6.
However, I do see similarities. We started on short acting Focalin first, and
had lots of success, but their were some issues with the up and down of
the short acting pill. Also, our doc at the time said that the longer acting
ones are better because it gives a steady stream of medicine into the
system, which is supposed to be better for a child. This has not been the
case for my son. After a trial of Vyvanse ( disaster on many levels) and an
even shorter run with Focalin XR ( no appetite,very anxious, angry
rebound, and didn't really help the ADHD anyway) we ended up back with
the short acting Focalin- which is more or less the same as the Methyl.
The second round of the Focalin has been even better! There is some very
mild anxiety only occasionally though, and there is a period about an hour
after he takes it that he gets a little disconnected, but it honestly doesn't
last long. This is also what we see at home, which is diff than the in the
school environment.The reports there are that he's interacting,
participating and focussed. I think when the demands of school are in
place the meds are working toward them, so they are not really getting
what we see in the unstructured home setting. The best thing is he does
eat, after the initial few months of not be hungry on the med. He's very
thin with a bad appetite anyway, so this is an important point. We also
figured out when to give the meds, and his body has adjusted to the ups
and downs,
so there is no rebound anymore. We time the second and third pills so
that they kick in as the other is wearing off ,and this creates that smooth
effect that the longer acting pills were supposed to achieve but didn't.
After seeing how bad things were on the Vyvanse and XR, we also were
better able to appreciate how much better the reg Focalin was for him as
opposed to when we first tried it and had nothing to compare it to. We
have seen 3 docs for meds since this started and we'll be sticking the this
3rd one. I had asked him if I should be putting on something longer
acting, if it was the necessary to get off the short acting pills, and he said
"absolutely not, if it's working for him". He said that some children just do
better on the short acting pills, and if they do it's fine to stick with them.
We are considering trying the patch because of the conveinece of not
having to take several pills in the day, and also just to see if there is
something that can be even better. i"m very concerned about him not
eating on it though, but we may give it a try. It's just good to know that
we can fall back on the Focalin again, and know it's working really well
with very minimal side effects. It sound lke your child and mine are having
trouble metabolizing the XR type pills, and/or they jusy don't agree with
them If you're having success with the Methyl you shoud feel ok just
sticking with it. In our school the med taking is not a big deal ( many kids
take meds there) because it is a school very geared toward ADHD. But I'm
sure your school nurse will be open and familiar with procedure, so if
that's the only issue you have, just talk with her and you should be fine.
Hope my story helped...Good luck!mommatrying40367.2574074074 "Stayed on 15 for two years. Only bad side effect was total non appetite. Started Tenex .5 in morning in August. Improvement. Started Intuniv alone in November. After a week added patch back in. Starting in February of this year went up to 20 on patch with Intuniv. Lots of problems with focus and attitude, mean, aggressive."
I'm curious why if the patch worked well for two years (aside from the appetite suppression, which is why I can see the Tenex was added) did you change to Intuniv? I'm wondering if the Intuniv in combo with the patch is what caused the focusing & attitude problems. Did something happen to make you want a change? Finding the right med combo is tough & as you probably know, you don't know until you at least give it a good try. It's also a real struggle, especially trying to succeed with school, if the combo isn't right. Having said that, IMO....I would continue doing what you're doing & have him do the 2nd dose at school. You know it works well for him so why change a good thing? I don't know anything about the Focalin XR, but who's to say it have the same effects?? Changing meds is tough and appetite suppression is at it's peak when starting a new med, so if you change to the Focalin, you'll be dealing w/that even more again. Just my opinion. Our son has been on the patch for 2 1/2 years but we have struggled with the short acting med in the morning to get something to help him during the time the patch takes to kick in. Everytime we've made a change on that morning med or increased his patch dose, we have struggled with appetite suppression but once he's stablized for a while, his appetite comes back to normal. The combot we have now seems to be working pretty good...it's not perfect but we're satisfied enough to not mess with it. It's a constant battle for us as parent's of ADHD kids...good luck.
epokey40367.6072916667