View Full Version : Focalin treatment updates


JenE
04-20-10, 01:09 PM
So this is day 4 of Focalin XR, 10mg. We havenít seen really any changes at home, maybe a bit more easy going. Hubby said he did better at the batting cages on Sunday but that could just be that heís getting better at it. LOL!! Did have trouble going to sleep last night but he did get his evening meds late (and they are sedating). Appetite stinks. Eats pretty good breakfast but mostly grains (cereal, rolls, waffles). Only ate maybe Ĺ a hotdog for lunch and a little cereal for dinner. Havenít seen any evidence of rebound unless the insomnia last night counts. He takes it between 7:15 and 7:45am. Canít really tell the onset and endpoint at this point.

Got a report on yesterday from his teacher. Still hyper in the mornings. Got work done with maybe a little less prompting. Maybe a little more impulse control.

So basically, Iíd call it little to no change which is what the doctor expected starting at the low dose. So unless she calls me back with a different plan, we will increase to 20mg tomorrow which is where she said he should start based on weight anyway (60 lbs). Hope that shows more positive influences. Iím not discouraged yet, just nervous. Thanks for all the support!

MyGuysMom
04-20-10, 01:28 PM
Glad to see this. We just had an evaluation with my son for dysgraphia, and the first thing we heard was, "whatever medicine he's on now is not working." He's been on Metadate CD 10mg and now 15 mg since last May definitely seen an result, but he's still very unfocused.

DH talked to his doctor today who suggested switching to Focalin. He said he would have started him on that, but inherited the Metadate from the previous doc and continued it as it seemed to be working. Starting at 5 mg and increasing to 10 if that does nothing. He's says it packs more punch and lasts longer. We've had an easy ride with the Metadate in terms of no side effects, so I'm a bit anxious about the switch but hoping for a positive result.

JenE
04-20-10, 01:41 PM
My dr said the typical approach is to start with metadate and then adderall but Focalin is similar to metadate and she likes it better--it's supposed to be smoother transitions and less side effects. Also, she gave me a pharmacy assitance card that basically makes it free for the first year. It pays up to $60 of the copay per prescription up to $720 for the year. Definitely a help so you might want to ask about it!!! Good luck to you and keep us posted!

MyGuysMom
04-20-10, 02:43 PM
A co-worker's son is on Adderall and he lost over 7 lbs in the first few weeks, so that kind of scares me. My guy is 52 lbs and can't afford to lose. Our doctor lives across the street, so he said he'd the prescription off tomorrow (we have to call to remind him as he has ADHD too) at our house, along with a coupon for a free month's worth. We'll see how it goes. We'll start over the weekend so if anything really weird happens it happens here and not at school. :-)

JenE
04-20-10, 02:50 PM
yeah, my guy is 60lbs and a bean pole so the appetite suppression is not good. Hopefully he'll work through it.

Good approach to start on the wknd. That's what we did. Still a little nervous to up the dose mid week but I'm gonna trust the dr. Let us know how it goes.

JenE
04-20-10, 08:29 PM
So teacher's report today--some improvement in impulsive outbursts and work completion. Still hyper in the AM and messy work. Best time of day appears to be 11:30 to 2:00. She also marked as improvement his interest in their current insect studies but he's always been interested in that so I don't count that.

So tomorrow, we'll increase his dosage to 20mg and see how it goes. Keep your fingers crossed!!

MyGuysMom
04-20-10, 09:34 PM
My guy is 52-53 lbs, and he's put on weight since starting Metadate, if you can believe that. Maybe he focuses on food more, I don't know. LOL. Good luck tomorrow.

musikat
04-20-10, 09:35 PM
Hi Jen,

We are on day 3 of Focalin 10mg, after upping it on Sunday. Still not seeing a whole lot of change. A few anger outbursts, though. I'll probably keep him at 10 for the week at least to adjust. I haven't gotten a teacher's report (she's not very forthcoming, even when I ask) so I don't know. He was actually home today (not feeling well, tired and listless). He started acting "normal" around 1:00 and I decided, for my own sanity's sake to give him the dose, even though it was late. He was maybe slightly calmer, but definitely still impulsive. He had a hard time sitting down to do his homework tonight (he is in Montessori and doesn't get regular homework but had an assignment). However, I found his homework difficult and frustrating, so maybe it was the work. ;)

About the weight thing, my son lost 4 pounds in two weeks on Vyvanse. He seems to be eating better on Focalin so far, but we are not at the right dose yet. His pediatrician recommended Boost protein drinks. I give him one to two a day. He loves them. I also stocked up on good snacks like cheese, yogurt, nuts, etc. So far so good on that front anyway.

Keep the updates coming. I will be interested to hear how 20 goes tomorrow!

JenE
04-20-10, 11:44 PM
Well, he ate ok tonight--grilled cheese sandwich. And he went to bed about 8:45 with no issues so that was good.

Musikat, your son's anger outbursts concern me since we've had issues with those also. Oh, so much to worry about!!!! Lots of prayer tonight and tomorrow!!

fancherml
04-21-10, 08:50 AM
We went up to 20mg of Focalin XR at one point but did not see a significant improvement but did have major side effects: insomnia and rages. 10mg seems to be best for him (only a little insomnia and rare rages but only moderate ADHD symptom control). We added Intuniv and it is awesome. We have complete ADHD control and no insomnia (Intuniv is sedating and "counteracts" the Focalin's insomnia) and no rages (only like 2 "emotional times" a week now, but it seems normal for an 8yo and it is usually whining about setting the table :O....which was a task that he could not complete before).

I said this in another thread: two different meds (a stim and an alpha-2 agonist) give us our son back with minimal side effects. Most days I forget that my son has ADHD (and this kid...I was worried that he would burn the house down or accidentally kill his brother).

HTH

fancherml

JenE
04-21-10, 09:01 AM
Thanks for your info! I was worried about going to 20mg mid week. How long after going to 20mg before you saw the negative behaviours (rages)? I just posted a new thread on going to 20mg today because he has a tummyache and is home from school. I'm hoping the dr may want to try 15mg instead and we can do it on the wknd. Awaiting her call.

We are already on Tenex (short-acting Intuniv) but Intuniv may be the next step.

fancherml
04-21-10, 02:12 PM
The rages started getting bad within a day or two of the dose increase. My DS is very sensitive to begin with and we easily went from "not working" to "to many side effects" with a single 5mg dose increase. We usually tried to do dose increases on the weekends.

Just an aside illustrating DSs sensitivity: we refilled our Focalin script last month and they gave us regular instead of XR (same dose, though). The teacher CALLED me that very day and asked "what is going on??!!" The non-XR Focalin wears off right around lunch and we are left with moody/sleepy/grumpy Intuniv-only DS. No stickers that week (until we got the refill fixed.....).

HTH! Good luck!

JenE
04-21-10, 02:48 PM
HHmmmm interesting. DS got his 20mg this morning but has had tummyaches today and didn't go to school. (see separate post) I'd like to think it was too much butter at breakfast but I really think it was the Focalin XR. I'm taking my perogative to go back to 10mgs tomorrow b/c he needs to be in school (history of school avoidance due to tummy issues) and we may retry the 20mgs on Sat or I think 15mgs might be better. Left a message with the dr but no response yet.

At least I should be able to get a feel for how he comes off the meds this afternoon without worrying about school. He did go with me for a hair appt today which took about 2hrs. He was great, sitting quietly playing his DS the entire time. I've never taken him before but I do know that even with his DS, he can trouble making it thru sister's 30 minute dance class on his old meds.

JenE
04-21-10, 10:15 PM
Ok, to wrap up the day. Except for the tummy issues (that lasted until mid afternoon), he was fine. He did very well at my hair dresser's and we didn't have any rages or meltdowns. The only thing I saw was maybe some hyperfocusing? He played video games all day on the DS and the computer. Hard to get him to stop. He got frustrated once but was able to put the game down and take a break so I thought that was good. Didn't want to stop playing games to do homework or eat but he seems to think that he doesn't have to do homework when he doesn't go to school. But he did eventually do it with only a little griping. Went to bed without issue.

Dr office called. Said to do whatever I was comfy with tomorrow--20mg, 10mg or nothing--and the dr would call me tomorrow. I'm ok with the 10mg (I think). He did fine on at since Sat w/o any tummy trouble and it might not have even been the meds that did it. I'd like to try either 15 or 20mgs again this weekend so I don't have to worry about school if the tummy ache comes back. Keep your fingers crossed for tomorrow!!

MyGuysMom
04-24-10, 01:35 PM
We started Focalin today - 5 mg. I can't see any difference, but it's hard for us to tell. He does not have hyperactivity, so it really comes down to school work. We'll try some math problems later. At least there are no reported side effects yet, like upset stomach. The poor kid did have one upset unrelated to Focalin. He discovered that all of his Yu Gi Oh cards went through the wash.

musikat
04-24-10, 05:23 PM
We moved up to 15 mg today. We weren't home (had a babysitter) and she reported he was more aggressive towards his siblings today. Now I am torn. Do I try the same dose tomorrow when we can observe (and hope he just needs a day or two to adjust), or do I back off to 10mg again?

Twiggy
04-24-10, 07:58 PM
Maybe try another medication like Dexedrine or Adderall.

musikat
04-24-10, 08:42 PM
Twiggy,

We tried Vyvanse before this (the other "class" of meds) and it was the same. We did have a brief few days where it seemed to work well but then it didn't and going up in dosage created a lot of anger and emotional side effects. That is why his doctor switched to Focalin. One of the things I don't like so far is that it doesn't last as long, so I haven't had as much time to 'observe" his behavior on it. By the time he is out of school it has generally worn off as far as I can tell.

I am reading a lot tonight about Inutiv and wondering if I should ask his ped about it (either alone or in conjunction with Vyvanse or Focalin). I really want to get the hyperactivity and argumentative/aggressiveness under control.

MyGuysMom
04-26-10, 08:48 AM
Today is the first school day with 5 mg Focalin. We'll see how it goes. On Saturday my son said that the Focalin affected his appetite because he could not finish his doughnut, but we pointed out to him that he had just had 6 pancakes for breakfast. LOL.

JenE
04-26-10, 09:16 AM
So we are at Day 10 on Focalin, Day 3 at 20mg. Over the weekend, he was basically calm and got along well with his sister. He did complain of a stomach ache a little a couple of times during the days but it wasnít enough to stop him from doing things.

Itís kinda hard to see how he does on the wknds but I would say based on his behaviour with his sister and at his birthday party that he has quite a bit more impulse control. We did have a meltdown last night about not eating dinner which was quite ugly and lengthy but Iím not ready to say it was due to the meds alone because he was also very tired from staying up late and his birthday party the night before. So Iím not going to jump to conclusions, yet.

Most concerning is his total lack of appetite. He hardly ate a thing all weekend. Sat-- Ĺ bowl of oatmeal in AM , a few chips in afternoon, 2 or 3 bites of pizza in PM. Sunó1 waffle in AM, a few chicken nuggets at lunch, maybe a quarter of a DQ Blizzard in afternoon, NO dinner. Anyone with experience here, will he adjust and start to eat more at some point? Even if the meds works miracles, I donít know how long he can go on eating (more like NOT eating) this way.

This AM he ate a bowl of life cereal with 2% milk and a Nutrigrain bar. He did not complain about his tummy at all and was happy and quite calm. Iím really curious to see how he does at school today. Iíll update later!!!

JenE
04-26-10, 09:18 AM
Good luck today! Hope his appetite stays good for ya!

Amtram
04-26-10, 10:19 AM
I'm sure it's different for everyone, and there's a big age difference between me and your son, but does his appetite increase after the Focalin wears off? I'm on 10mg XR, and by about 8 at night, I am RAVENOUS. Just wondering.

musikat
04-26-10, 10:26 AM
Appetite aside it seems like the Focalin is working for him at least. Maybe the appetite will even out?

We tried to go up to 15 this weekend and it was a disaster. We, too, had a birthday party (a friend's) and he was argumentative, hostile, definitely NOT calm. I've put a call into our pediatrician to discuss our next step. :(

JenE
04-26-10, 10:42 AM
Amtram, thanks for the input. So far, it doesn't seem that he's is hungry at night but we may be trying to feed him too early. He takes his meds about 7:30am and I'm still not sure when it is actually wearing off. It seems one night we ate later due to sports and stuff and he ate "ok"--not great but he did eat. So maybe we just need to feed him later?

Musikat, I'm sorry it didn't go well for you. Is he taking anything else? We take Tenex also and I think someone else on here takes Intuniv with the Focalin and gets good calm smooth results. Was he difficult all weekend? Was there anything else that might have caused his behaviour?

Oh, it is so frustrating trying to get these meds right. Hang in there and keep us posted!! HUGS!!

musikat
04-26-10, 10:54 AM
Oh this was definitely related to stimulants. It was the same when we tried to go up on Vyvanse and NOT his "normal" (although he can get that way occasionally). I am going to look into Intuniv for him in addition to the Focalin and see if that helps.

JenE
04-27-10, 09:15 AM
DS had a very long day yesterday with baseball practice right after school and then scouts. He didn't get home until 7:30 and was very tired and barely ate anything. He took his evening meds about 7:45pm and went to bed between 8:45 and 9pm without incident. BUT he was up and wide awake at 2am. He was wired--watched TV, played DS, couldn't settle. His nose was snuffy so I gave him some benedryl and he finally fell back to sleep about 4:30am and I got him up at 7:30am. He seemed pretty good but tired. He ate ok and took his meds. He seemed a bit hesitant when it came time to leave for school and on the way (only about a 5 min trip) he started complaining of his tummy hurting. (He didn't complain at all yesterday.) By the time we got to school he was totally upset and moaning about his tummy and refused to go to school. So I had to bring him home. Also, his sister had to be at school at 6:30am for a field trip so she wasn't here when he got up. All of this--not sleeping well last night and Sis not being here broke his routine and I wonder if that is more the issue for him.

As for school yesterday, he had an overall good day--completed most of his work and was good on the playground but she said he was really hyper in the AM making noises and arm wrestling. And he got frustrated really easily and gave up too quickly if he thought something is too hard. I need to clarify with her if this is worse than before or just still there.

I have a call into the dr with an update and we'll see what she says. I'm not convinced we need to change anything (unless we try dropping down to 15mg) but the tummy ache and insomnia as well as the lack of appetite is definitely concerning. But he can't afford to miss more school and I can't afford to miss more work. With the stims, would we see a gradual improvement in his behaviour and work habits at school? Or is what we are seeing at Day 3-4 at this dose what we can expect?

musikat
04-27-10, 09:36 AM
That's interesting because my son (the second night at 15mg) told me he woke up at 2:00 a.m. and couldn't get back to sleep the rest of the night. I suspect he did, but not deeply. He said he saw the clock at every hour. He had dark circles under his eyes and had a huge meltdown yesterday.