Focalin XR/Intuniv with SPD / ADHD child | ADHD Information

Hello all - please excuse me as I'm not really good with the internet so hopefully this hasn't been covered & if so, I apologize

My son is 8 y/o.  He was dx with SPD when he was 6 y/o.  He went thru months of OT to help.  After starting 1st grade mid way thru, we started noticing not only the 'typical' SPD things He was also having focusing issues.   We took him to a developmental physician as I found that some neurologists we talked to seemed to dissregard the SPD entirely.  The dr found that he has SPD with ADD/HD components.  We've tried a variety of meds for him- metadate seemed to help him focus however the anxiety for him was immense so much that he was ripping skin off his fingers (since he has at times either heightened sensitivity or decreased sensitivity-he didn't even realize the pain he was infliciting)  We've had our share of experiences with different stimulants all having their own trouble until we found Focalin XR (he's on 20mg)  This worked wonders for his finger issues as the dr told us that it lessens the side effects of anxiety/and tics.  My son is now in the 3rd grade.  He got back from winter break and now has been having extreme issues with his SPD and the frustrations he feels with not being able to effectively deal with his emotions.  We notice that especially when he comes down off the Focalin, he can become frustrated to easy.  This can go on for hours and even with positive redirection - it seems to have no effect.  We (dr & I) feel the major contributing factor is that he is very gifted (but alas as many know this in the school systems if your child is funcitoning at 'grade' level, they don't feel the need for intervention)  My son has a 504 in place to help out but it doesn't take away the recent over anxiety/frustration he has been feeling.  Last week the dr said that we should try him on the new Intuniv on top of the Focalin XR.  She would like to have this in effect before the FCATS start in March (which I think is part of the root issue he's dealing with)  Here's my dilema.  He has always been sensitive to medications and I'm not really that comfortable with giving him two meds.  On the other hand if it helps him feel successful & feel confident about himself, I will try it.

 I remember during the summer, he was off any medicine and he did an incredible job controlling himself.  He gained 20 lbs & was happy.  We had him on a behavior system that I created for him.  School is another story on top of it being the major transition grade (3rd grade)  He is doing weel in school but still exhibits more recently more of his SPD (mainly having to carass things and overly clumbsy)  He's on a theraputic dose of focalin but the teacher has noticed that since we've been back, it's like he's not getting the lesson "not there..."  I know that Tenex has been around for a long time and intuniv has not. 

 Are there any families that have a child with SPD ADD/ADHD that are on the Focalin XR and are starting the intuniv? Please if you don't mind sharing your success/concerns.   Sorry if I rambled on - it's just so hard to see my child struggle since he really does try & I see how difficult it is for him when he (in his own mind) doesn't have things happen the way he hopes they will. 

Thanks again for sharing - you can PM me if you'd prefer

Miichelle40198.6000231481We've had a lot of luck with the Focalin/Intuniv combo, so I say try it... you never know....

But I'm more interested in what you said about his 504.  It sounds to me like he'd be better off with an IEP, which would better take his frustration, anxiety and abilities into account.  A lot of schools like to weasel out of IEP's with ADHD kids, but that's against federal law.... ADHD is a qualifying disability, and with the SPD on top of it, I'd say he more than qualifies.  With the IEP he'd get extended time and assistance with the FCATS too, which may relax him enough to show his gifted tendencies.

Anyway, just a thought...

Audrey

Thank you so much for the Focalin/Intuniv input.  My son actually did test last year for the IEP.  "Unfortunately" he tested in the superior range in all areas.  The psychologist and the staffing specialist at the IEP told us that he didn't qualify based on his test results.  Needless to say, we were upset by this.  There are many gifted children that have LD and it's a shame that they can fall thru the cracks.  I mean, he was struggling, failing all of his math tests (fortunately in 2nd they don't receive the letter grades - but it shook his confidence.)  But according to their tests, he was in a 'superior' range (3-8th grade levels).  The school sees them functioning at grade level, even though they are struggling, they will not provide assistance to help them achieve where individual child should be. I couldn't believe that they didn't see that there was such a gap in that bridge from test results to proof positive in the classroom.   We all thought that he was a certain to get an IEP before that.  It's unfortunate that they take a kid that has auditory/sensory issues and add in ADHD to boot and test them for LD in a one-one setting.  My son does incredible testing one/one (very controlled environment) however that is not realistic to his classroom setting.  But when we presented this to the specialist at the staffing, she said that they would not allow an IEP based on his test results. 

It's a real shame but we've got 2 things going for our family 1. our son is in a terrific magnet school in florida and 2) he has a bulldog for a mom that is his #1 fan and #1advocate!!!  Like our guidance counselor said to keep at them and make sure that they stay on top of things.  He is actually successful in school but struggles as to what he understands and that he learns differently than others in his class.  We are very fortunate to have an amazing teacher that took her time to read up on SPD at the beginning of the year.  Thanks for the input again and I hope that others have been more successful with the IEP more so then we have

Miichelle40198.68125curious to know if you've gone ahead with the intuniv/focalin combo

my son is aspergers and currently taking 1mg of intuniv daily; while we've seen results in that he's a bit calmer and willing to listen/behave - he's still having focus issues in school ... The dev. pediatrician suggested we try focalin xr (if the insurance will cover it)

we tried vyvanse and my son had an allergic reaction (2 days of coughing) and daytrana - which resulted in several explosions worse than what we were treating.  These were tried before the intuniv so I don't know if the reaction would be different with the intuniv.

anyway -- wondering if it's been good for you.

Thanks,
Rachel

My 7 year old daughter has severe ADHD.  Vyvanse did not work for her (bad reactions), so we have her on Focalin.  We started with extended release, but she seems to metabolize the medication too quickly.  She is now on 5mg Focalin two times a day.

While this has improved her symptoms, she was not getting enough control over her hyperactivity and lack of focus/attention.  She was continuously "getting in trouble" at school for not paying attention, not following instructions, incomplete class work, etc.  So, her doctor started her on Intuniv.  She is up to 2 mg of Intuniv. 

How does the combination of Focalin and Intuniv work?  AMAZING!!!  She has gone from bringing home daily reports of interrupting, talking when she's not supposed to, incomplete work, not following instructions, etc. to getting stickers every day.  She has brought home stickers every day for the past 3 weeks.  Not only that -- her teacher has her on a contract.  Each day she receives 6 talk tokens.  Each time she interrupts, she spends a talk token.  If she runs out of tokens, she is not supposed to talk unless she is called on.  She has not spent a single talk token for over two weeks! 

Obviously, all of her symptoms cannot magically go away.  But, I have to say that this combination of medication has significantly reduced her anxiety, has increased her self esteem, and has dramatically improved her relationships with her peers and her teacher.  While the focalin did have the effect of creating some anxiety for her (picking at her fingers), the intuniv has calmed down the anxiety so much that her fingers have healed.

 

Sorry I haven't responded to any posts as my other son came down with pneumonia.  We've been on the focalin/intuniv for about 1 month now and are seeing some promising results.  We did have to switch him to the nightime dose as we did notice an increase in him  being confused and tired in the classroom.  Very spaced out.  He is still on the 1 mg of the intuniv and has stayed at the 20mg of Focalin XR.  His first test though he still got very anxious and failed it - we are still noticing that with the focalin he has higher anxiety and the 1mg of intuniv seems to not eleviate that as he still picks at his fingers.  We are currently closely monitoring his intuniv dose to see if he needs to go up to 2mg. 

My only disapointment (w/intuniv) is that now that he's coming down with a head cold, they've told us to be careful with what we give him.  The cough/cold meds (OTC) can affect the heart rate, so just a thought for others out there or any thoughts?  So far it seems like the focalin/intuniv has some promise to help him out - like the post before me, it's not a cure all for this but it seems to help give him a boost up on his road to living with SPD/ADHD.  We've seen this combo help him with issues and transitioning times seem to go more smoothly for him.  Thanks for the input - keep them coming as we're all in this together right