Tuesday, March 12, 2013

Focalin, Yay!

This is the story of my sweet daughter Daphne and how Focalin has changed her life.  Daphne has ADD.  I call it ADD although the clinical name du jour is "ADHD, Non-Attentive Type."  She doesn't have the H, hyperactivity.  She is just completely out of focus, lost in space, most of the time.  So I call it ADD because, well, it just makes more sense for her.  Daphne is not a naughty child.  She isn't a bad child.  She is naturally sweet, charming, and fairly obedient (though she has a wicked sneaky streak).  Her behaviors have all tended towards simply not being present in her own life but living almost entirely in her head.  I have two other children.  So if you're quick to blame it on parenting, the facts point elsewhere.  My other kids seem to have no troubles obeying, listening, following instructions, remembering things--at least as much as kids that age do.  Whatever Daphne has, it is biological.  It is REAL.  And it needs help.  Enter Infuniv and Focalin. 

Daphne was diagnosed in Kindergarten.  Although she had 2 years of preschool and knew all her letters and sounds, and was put into the more advanced Kindergarten class, within weeks her teacher had called me to say that Daphne was falling behind.  The class she was in had reviewed letters and sounds and had moved on to reading, but Daphne could not keep up.  She never paid attention, was never on task.  At first I thought, "Well, she's 5.  It's pretty normal for a 5 year old to be off task."  But when we discussed it more, the teacher said she was "SIGNIFICANTLY more off task than any other child."  So they moved Daphne to the slower class.  But even here, Daphne floundered.  She just didn't seem to be able to stay focused on what was around her, not even for a few minutes.  When I went in and observed her in the classroom, she had a glazed look on her face. At home she was very lively and chatty, and I expected her problems in school to revolve around getting in trouble for talking too much.  But to my surprised, she never made a peep.  She sat there almost in a coma, her mind obviously elsewhere.  When they sang, she was silent.  When they read a story, she didn't look at the pictures.  When the teacher asked a question, Daphne, my little know-it-all, never raised her hand.  And the look on her face said it all:  I am not present.

So we reluctantly took Daphne to the pediatrician.  He gave us some tests to fill out and one for Daphne's two teachers.  When we brought them in, it was confirmed.  Daphne had ADD.  She also was low on the spectrum for ODD (Oppositional Defiance Disorder).  I hadn't heard of this one, so I looked it up.  What it basically comes down to is the inability to perceive authority as something different from one's self.  In severe cases, it can mean a lot of worse things--really destructive, awful things.  But for Daphne what it basically meant was that she wasn't hardwired like most people to perceive that a teacher or a parent or a policeman or anyone else was a figure of innate authority who should be slightly feared, definitely minded.  To her, all people are on equal footing to herself.  So unless what they're asking makes sense to her and fits her own desires, they can be ignored without consequence.  This makes parenting/teaching/otherwise disciplining VERY challenging.  Where my other children, and the other children I've taught as a teacher, innately understand that you should follow adults, she doesn't.  Everything must be explained in a logical, rational way and it must be brought to coincide with her view of the situation, or else it is disregarded.  This includes matters of safety!  If she decides that nice strangers are OK to talk to, the rule about not talking to strangers is disregarded.

So, moving on, we talked as a couple about whether or not to put Daphne on medication.   But two factors ultimately made us decide to try.  1) My mother has severe ADHD for which she has taken medication for about the last 10-12 years or so.  She spent most of her life without it, without knowing why life was so hard for her.  Once the diagnosis was made, and medication ensued, her life changed.  She could think, learn, perceive...function!  Meds were not a cure-all, but the difference between her on and off meds was remarkable.  2) Daphne simply wasn't learning.  At all.  She wasn't learning and she was struggling socially.  She wasn't self-aware enough to realize she was behind or "different."  But others noticed.  She didn't make friends at school.  She had a hard time keeping friends in the neighborhood.  Her ADD was already having a huge impact on her life, and she had only just started school.  We knew there were possibly other methods of dealing with ADD--not med related--but we felt time was of the essence with her, and the longer we let it go while we experimented, the further behind she would get and the harder it would be to catch her up.  So we started, with some reservations, on the pharmaceutical path. 

Med #1 was Adderall. Adderall is a stimulant.  I don't know the whole chemical background of ADHD and medication, but I know that there are chemicals missing in the brains of ADHD people that most people have.  And these meds stimulate the production of these chemicals.  Well, Adderall turned Daphne into a monster.  Within 2 days, Daphne was frustrated, angry, emotional, irrational, confrontational.  She also completely stopped eating, had no appetite at all, and couldn't fall asleep at night, which undoubtedly only exacerbated the emotional symptoms.  She was so mean and aggressive that I would go to bed in tears every night.  After only a week of the proposed 4 week trial, I stopped giving Daphne Adderall.  No benefits at school could outweigh these side effects.  Within a day of going off Adderall, Daphne's side effects subsided and she returned to her normal, happy, pleasant (though distracted) self.

Med # 2.  Tourette's Syndrome runs in our family.  And one of the minor side effects Addreall also caused in Daphne was tics : squinching of eyes, squeezing of hands or doing gestures with her hands, moving her lips or tongue in odd ways repetitively.  And since my mother has Tourette's, which is aggravated by stimulants, we chose to try a non-stimulant med next.  My mom had had good success with Strattera, so that's what we chose.   The Strattera seemed to work well at first.  We watched Daphne closely for signs of the aggression, irrationality, and mood swings, but none appeared.  Her appetite and sleep were also seemingly not affected.  So then I waited to see if there were any positive effects from the med.  A couple of weeks after she started it, her teacher reported that Daphne had improved dramatically at school.  She was participating, staying on task, completing work, and learning!  So this was great news for us.  Unfortunately, over the course of the next 6 months, the negative symptoms we had seen with the Adderall began to occur with the Strattera.  They came on much more gradually.  But by the end of the school year, I almost couldn't live with Daphne anymore.  She was so hostile, so emotionally fragile--the slightest little thing would send her to wails and tears--argumentative, and hard to deal with.  She also began to have trouble sleeping and eating again.  I started withholding the medication on the weekends just to give Daphne's body a chance to sleep and get calories in, and I noticed that on those days, she was so much more pleasant and rational.  So I made the tough choice to take her off meds.  Within 3-4 days, Daphne was back to being happy, cheerful, cooperative, and loving.  Man, what a difference!!  And since it was summer break, I wasn't too worried about her focus issues.

Med # 3.  Flash forward to 1st grade.  We started Daphne at a new school, a second-year charter school.  We knew that new charters often have some growing pains, and we were prepared to be patient as the school worked out the kinks.  But we weren't prepared for a school that was a complete and utter mess.  A combination of radical educational theories (no homework, "green" learning - no books or papers, multi-sensory learning--kids having to spend part of each class up and moving as they learned, and class rotating like they do in high school) as well as a terrible teacher and a complete lack of curriculum meant that Daphne's opportunity to learn was severely compromised.  Add to that that she was unmedicated for her ADD through most of the year and it meant that Daphne lost an entire year of school.  Over the summer, before 2nd grade, Daphne had her 7-year check up, and the pediatrician recommended a new medication, Intuniv.  Intuniv, he said, had a very low side-effect profile.  It was new.  But we might want to give it a try.   Since going off Strattera, the worst of Daphne's bad behaviors had subsided.  But she was still far more difficult to deal with than her siblings (due to her ODD) and was still struggling to hear me talk to her and complete any small task I asked of her.   Knowing that she had a new school year coming up, I decided to give it a try.  Intuniv was a success!  Of sorts.  It did not, unfortunately, affect her focus much.  She was still very inattentive and struggled to complete even the smallest tasks.  But the Intuniv had a marked affect on her ODD.  Daphne became much less argumentative.  She began to listen to her mom and dad, to consider our requests as actual options, and to obey.  Her teachers at church remarked that she was so much easier to handle.  She didn't become docile or boring; she retained her lively spark.  But she just became more...."normal" in terms of being able to follow instructions like other children.  So that was a great blessing.  Being Daphne's parent suddenly became a positive experience instead of a constant tug-of-war.  Daphne has been on Intuniv about 9 months now.  It continues to help her ability to listen and obey and we have noticed few side effects.  (At first it made her VERY talkative.  She seemed to have a motor mouth that we could hardly shut up.  But that subsided.  It also made her VERY tired at first.  We knew that would happen, but it took trying different dosages and different times to give it before we found the best one - 2 mgs taken at 4pm, or , along with Focalin, 1 mg at 8am and 1 mg at 4pm.   She does still have short wakeful periods at night that she didn't have before, but overall the side effects are way less than the positive effects.)  So Yay for Intuniv!!

Med # 4.  FOCALIN!   Although Daphne's Intuniv helped her ODD and the negative behaviors that go with that tremendously, it did little to nothing for her inattentiveness.  We still struggled to get her to do any sustained activity for more than a few seconds, and the more "painful" activities, like trying to read or do a chore, were impossible.  Every attempt to get her to sound out words ended in tears.  Her Sensory Processing Disorder also was making life miserable.  She would only wear one pair of shoes (heaven help us if she misplaced them!) no socks, no jeans, very few pants, and only shirts with no embroidery or embellishment of any kind (they bothered her skin).  Getting her dressed every day was a nightmare.  Tears and screaming always ensued.  This is what eventually drove me to a new pediatrician, one who specialized in psychiatric issues.   While visiting the NP, Helen Aoki, she honed in on the fact that Daphne was so terribly behind in school (we had started at a new school by then and she was more than a year behind her peers).  She wanted to focus more on fixing that than the sensory disorder because the consequences of Daphne getting even further behind were much more severe.  (Daphne had been put in a remedial reading group with a speciality teacher, and even in that she was below the lowest child.  Essentially she was at the level she was when she started Kindergarten.)  So when she suggested a stimulant medication, my first reaction was to revolt.  But I heard her out, and she explained why Focalin was different than Addreall and the other stimulants.  In basic language, scientists had managed to isolate the particles that tended to cause the side effects, and Focalin was only the pure essence of the med without the side effects.  I was skeptical, but I absolutely knew that Daphne's lack of focus and inability to learn at all in school was extreme and would cause her to fail school ultimately.  (I had been in to observe her again, also to guest teach in her glass, and even when I was there, she couldn't manage to pay attention to me at all.)  So we tried the focalin and....


I had her teacher carefully observe her.  Earlier in the year, the teacher had created these half sheets she'd send home daily where she'd assess Daphne in 6 areas where she struggled (behaviorally) and would give her a smiley, middle, or frowny face for both am and pm.  Daphne typically would get between 1 and 6 smileys a day, a few middles, and the rest frownies.  Well, the first day on Focalin, she had a perfect score--12 smileys!  The second day, 12 smileys!  The third and fourth days, 11/12 and 12/12 smileys.  I called the teacher to ask her about it--I wondered if she were being more lenient because she knew I was expecting results.  But no, she said, Daphne seemed surprisingly focused, was where she was supposed to be when she was supposed to be there.  She took correction much better and apologized immediately for being sassy.  She was finishing her work in class and getting along better with the other kids.   Needless to say, we were thrilled!

It has been about 6 weeks now since she started the Focalin.  She has never had less than 10 smileys on her teacher sheets since then.  Her test scores have improved, her all-around behavior has improved, and her ability to get along with other kids and teachers has improved.  I don't see the affects as much at home because the pill only lasts about 8 hours.  It's wearing off about the time she gets home from school.  But even with that (and on weekends, where sustained focus isn't as prevalent), I still see positive improvements.  And remember that sensory processing disorder?  It has come much more into the normal range.  She still has issues with all the things she did before--socks, shoes, tags, seams, jeans, etc.--but she is rational about them now.  You can calmly explain to her that sandals are not appropriate for winter, and that stockings must be worn to church, and more often than not, she'll comply.  There are still occasional melt-downs over shoe choice, and she still refuses to wear jeans (more out of habit than anything, I think), but we're making progress.  And there are far fewer come-aparts over clothing (or anything else now).  Daphne has become pleasant, cooperative, happy, fun, and is channeling her vast imagination and creativity for good instead of evil, LOL!

So anyway, I'm very happy to say that the combination of Focalin and Intuniv have been a godsend.  We could not be more thrilled with the results and are carefully monitoring her for any ill side-effects which may crop up.  But so far, there haven't been any of note.  So if anyone reading this is on the fence about trying Focalin, I highly recommend it.  Of course, everyone's body chemistry is different.  And a pill that works for one person might not work for another.  But this one has been so good I think it would be worth giving it a try.  The positive effects on Daphne socially and academically (as well as to our relationship as mother and daughter) far outweigh any small negatives associated with the meds.  Having a happy, productive, socially accepted child with a positive self-image is the greatest thing a parent could ask for.


Bjorge Queen said...

Daytrana was finally a third time charm for us. Sensory issues make it impossible my kid to swallow a pill.

Omgirl said...

Well that must be the one miracle of Daphne...she swollows pills like a champ!