ADHD Medication Questions

[Chantillylace]

My son is 4 (getting close to 5 now) and has ADHD. In July, we tried a Daytrana 10mg patch for 10 days. He did great for the first 7 days... although he wasn't sleeping well and would only eat a few bites for lunch. The problem is that he started to have a terrible crash about an hour after taking the patch off. The last 3 days of the 10 days I had to pick him up from daycare in the afternoons because he was hitting the teachers, refusing to do anything (i.e. the class is going outside and he refuses to go, things like that), etc. He also had emotional lability with it.

Needless to say, it was my first experience with ADHD medication and it scared me. I didn't go back until a few weeks ago when he was suspended from his pre-K class for hitting/kicking/scratching his friends and the teacher. I started with 2.5mg of Focalin and didn't see any difference at all, so I went up to 5mg. We tried this for about 2 weeks. He would get overly emotional about once every other day. He was eating and sleeping well too, and there wasn't a noticable crash. The only problem... it worked as in he was controlling his impulses, but I just couldn't tell a huge difference like I could with the Daytrana other than he wasn't hitting, etc.

So yesterday I gave him 7.5mg. My pediatrician had said that we can titrate up by 2.5 until we find the right dose. I could literally see it kick in on the way to school. He started staring off into space, so I turned off the music and said, "How are you?" and he just started sobbing. He pretty much cried ALL morning until lunch time. I ended up having to pick him up from school that day and take him home. Today I went back down to 5mg and I haven't had a call from the school yet.

So, my questions: Should I try a different medication or just stick with the 5mg since he's not hitting/kicking/scratching right now? When considering the emotional lability about once every other day, should I try a different medication? I guess my fear is that if I try something else he'll stop eating/sleeping like before or he'll have a crash like the Daytrana.

Thanks for your help!

 

[InsaneCdn]

He's only 4!

First, a caveat: Mine started medications at 5 & 6. I'm not anti-medications - we "live" on them.

But... somewhere between 5 & 6, how a kid handles these medications changes. It changes again toward puberty, and again somewhere between 18 & 25... psychiatrists around here won't give "adhd" medications to kids who are not at least in kindergarten. They prefer to wait until grade 1 unless it is severe (as it was in our case - not behavior but major focus issues).

ADHD medications do not usually affect impulsivity... they affect focus.

But... are you SURE he's ADHD?
Your sig says... sensory processing disorder (SPD) + ADHD... and if you have those two? what else does he have? in addition and/or instead of?
For example: ADHD commonly goes with any combination of: Developmental Coordination Disorder (DCD) (developmental coordination disorder), Auditory Processing Disorders (APD) (auditory processing disorders - there are multiple), LDs (learning disabilities), plus secondary challenges like anxiety and/or depression. BUT... many kids diagnosed with ADHD plus other stuff... aren't really ADHD but rather, Aspie or Autism Spectrum Disorders (ASD).

Who gave him the diagnosis of ADHD?
What kind of evaluation?
What was he like as a baby and toddler?

The point being... if he isn't having ADHD-related focus issues, then ADHD medications are probably not the answer and may make things worse.

 

[Malika]

It is a shame that there is no other way to help him stop kicking/hitting/scratching other than by giving him medication that is clearly rather overwhelming to his system. No, I'm no anti-medications en bloc either but for such a young child it is controversial. I understand how difficult it is, how the school is probably demanding that you do something but are medications really the ONLY line of attack? Particularly since they do not seem to be working as intended.

 

[Chantillylace]

He's only 4!

First, a caveat: Mine started medications at 5 & 6. I'm not anti-medications - we "live" on them.

But... somewhere between 5 & 6, how a kid handles these medications changes. It changes again toward puberty, and again somewhere between 18 & 25... psychiatrists around here won't give "adhd" medications to kids who are not at least in kindergarten. They prefer to wait until grade 1 unless it is severe (as it was in our case - not behavior but major focus issues).

ADHD medications do not usually affect impulsivity... they affect focus.

But... are you SURE he's ADHD?
Your sig says... sensory processing disorder (SPD) + ADHD... and if you have those two? what else does he have? in addition and/or instead of?
For example: ADHD commonly goes with any combination of: Developmental Coordination Disorder (DCD) (developmental coordination disorder), Auditory Processing Disorders (APD) (auditory processing disorders - there are multiple), LDs (learning disabilities), plus secondary challenges like anxiety and/or depression. BUT... many kids diagnosed with ADHD plus other stuff... aren't really ADHD but rather, Aspie or Autism Spectrum Disorders (ASD).

Who gave him the diagnosis of ADHD?
What kind of evaluation?
What was he like as a baby and toddler?

The point being... if he isn't having ADHD-related focus issues, then ADHD medications are probably not the answer and may make things worse.

He was first diagnosed by his pediatrician and he recently had a full evaluation by a psychologist. He only has ADHD and maybe mild ODD. He didn't want to say for sure on the ODD because he felt like he may have been crashing from the medication because the evaluation was in the evening.

There is no autism/aspergers, learning disabilities, Auditory Processing Disorders (APD)... any of that. I know for sure.

His ADHD is pretty severe. We've been absolutely struggling for 2 years now. The teacher did not make the call on medication... I did. He is so impulsive and he's having trouble socially because of the ADHD. Both the pediatrician (who is experienced with ADHD) and the psychologist both think that he's severe enough for to treat it. I really, really don't have any other options...

As a baby he was very colicky, and as a toddler he was kicked out of a "preschool" for biting.

 

[Chantillylace]

It is a shame that there is no other way to help him stop kicking/hitting/scratching other than by giving him medication that is clearly rather overwhelming to his system. No, I'm no anti-medications en bloc either but for such a young child it is controversial. I understand how difficult it is, how the school is probably demanding that you do something but are medications really the ONLY line of attack? Particularly since they do not seem to be working as intended.

I've tried EVERYTHING. I've cut out food dyes. I've seen a child development specialist. I've taken him for a psychological evaluation. I just don't know what else I can do...

 

[Malika]

I understand Chantillylace.
I have no experience and not much knowledge about ADHD medications. But in Europe they are licensed only for children over the age of six and there are obviously reasons for that. I have heard doctors saying that before that the child's brain is simply too undeveloped and volatile to be able to handle them.
Is there no way you can hold off on the medications for another year, and see what that extra year brings in terms of development and maturity also?

 

[Chantillylace]

I understand Chantillylace.
I have no experience and not much knowledge about ADHD medications. But in Europe they are licensed only for children over the age of six and there are obviously reasons for that. I have heard doctors saying that before that the child's brain is simply too undeveloped and volatile to be able to handle them.
Is there no way you can hold off on the medications for another year, and see what that extra year brings in terms of development and maturity also?

That's interesting... I didn't know that about Europe. Here in America, if the child is severe enough, then they will put them on medication as young as 3. I'm going to have to dig into some journals and do some research.

I've kind of already been through the to-medicate-or-not-to-medicate, and I stewed over it and weighed the options for months. My son's little self-esteem was starting to plummet because he's being known as the "bad" kid. The wild, crazy, defiant, wound-up little boy I can handle. It's the agression that's getting him kicked out of schools that I have to do something about.

 

[Malika]

It is not just in Europe. This is from the information sheet produced by Novartis for Focalin in the US:

Focalin XR should not be used in children under 6 years of age, since safety and efficacy in this age group have not been established.

I do not know why it is being prescribed when the drug manufacturers themselves do not recommend it for this age group.

(Ref: http://dailymed.nlm.nih.gov/dailymed/archives/fdaDrugInfo.cfm?archiveid=10273#section-6.11)

 

[InsaneCdn]

His ADHD is pretty severe. We've been absolutely struggling for 2 years now. The teacher did not make the call on medication... I did. He is so impulsive and he's having trouble socially because of the ADHD. Both the pediatrician (who is experienced with ADHD) and the psychologist both think that he's severe enough for to treat it. I really, really don't have any other options...​

OK, this is going to be personal opinion and personal experience, but...
From the way you describe your child?
There's no possible way that it is "just" ADHD.

My immediate family is all ADHD of one form or another (kids, siblings, parents), plus likely grandparents (both sides) plus... who knows how many other relatives. I grew up in ADHD-land. GFGbro was over-the-top high-energy impulsivity all the rest of it. K2 is inattentive-type. We cover the whole range of ADHD.

Social skills issues at such a young age are NOT a result of ADHD.
At 9 and 12 and 15? sure... not because of how they are wired, but because the ADHD and it's resultant immaturity means you get left out of opportunities to learn social skills... in which case, the problem is lack of experience.

in my opinion - no matter what the developmental pediatrician said - this is NOT what you would find in an ADHD kid.

Autism Spectrum Disorders (ASD) tends to get caught easier than Aspergers. Aspergers is frequently missed... for a whole raft of reasons.

How comprehensive was his evaluation?
A couple of questionaires and an hour with the doctor?
Or ... 6-10 hours of testing, evaluations, etc?

Just the 'hint' of ODD? major, MAJOR red flag for... undiagnosed conditions that are driving this kid crazy.

He will NOT have been tested for APDs - because other than the severe impairment of verbal skills in the classical Central Auditory Processing Disorder (CAPD), most APDs cannot be tested for until the child is 7 or 8. Doesn't mean it isn't there, though.

 

[Chantillylace]

OK, this is going to be personal opinion and personal experience, but...
From the way you describe your child?
There's no possible way that it is "just" ADHD.

My immediate family is all ADHD of one form or another (kids, siblings, parents), plus likely grandparents (both sides) plus... who knows how many other relatives. I grew up in ADHD-land. GFGbro was over-the-top high-energy impulsivity all the rest of it. K2 is inattentive-type. We cover the whole range of ADHD.

Social skills issues at such a young age are NOT a result of ADHD.
At 9 and 12 and 15? sure... not because of how they are wired, but because the ADHD and it's resultant immaturity means you get left out of opportunities to learn social skills... in which case, the problem is lack of experience.

in my opinion - no matter what the developmental pediatrician said - this is NOT what you would find in an ADHD kid.

Autism Spectrum Disorders (ASD) tends to get caught easier than Aspergers. Aspergers is frequently missed... for a whole raft of reasons.

How comprehensive was his evaluation?
A couple of questionaires and an hour with the doctor?
Or ... 6-10 hours of testing, evaluations, etc?

Just the 'hint' of ODD? major, MAJOR red flag for... undiagnosed conditions that are driving this kid crazy.

He will NOT have been tested for APDs - because other than the severe impairment of verbal skills in the classical Central Auditory Processing Disorder (CAPD), most APDs cannot be tested for until the child is 7 or 8. Doesn't mean it isn't there, though.

Yes, it was one hour of interviews and one hour of testing. He only did an Autism Spectrum Disorders (ASD) screening and admitted that he is no expert, but the screening was SO low that it wasn't even close to a red flag for a possibility of Autism Spectrum Disorders (ASD). Both his teacher and I filled out papers and they ended up being pretty similar.

As for the social skills... I've only even heard from docs that ADHD can affect social skills. The psychologist actually said that his son has ADHD and is 8 and continues to have trouble with social skills. He says that he wishes he would have medicated sooner and maybe he wouldn't be having the troubles now - or as bad - with those skills.

Here are a few of our problems at home that we're having:

• Trouble following through with instructions at home " even when reminded multiple times. I can sit next to him and tell him to put his shoes on and I would still have to nag him 5 times before he actually did it. This is not the result on comprehension of any kind (trust my opinion here... I'm a speech pathologist).
• Difficulty staying seated through a meal and finishing (at home " not reported as a problem at school probably due to peer pressure). Will get up 5+ times. If pushed to stay seated and eat, then he will claim he is not hungry and then be crying an hour later of hunger.
• Difficulty in high stimulant environments (i.e. restaurants, grocery store, school, tee-ball practice). When I say difficulty... I mean that we will go WAY out of our way to avoid these situations with him. He can NOT sit still at a restaurant. At all.

At school:

• His teacher says everything is on the floor.
• He can't sit still at circle time (I know he's four... but the whole class is 4 year olds)
• He is very impulsive. She says she can tell he doesn't plan to hit when he's upset... it's almost like he does it before he can control it. Also, a note... he doesn't hit at home. He isn't aggressive at home at all (or at church, birthday parties, and play dates) but he has been aggressive at the past 3 daycares/schools

I have been concerned about Asperger's before. My dad has Asperger's (undiagnosed, but it's obvious). The psychologist was insistent that he was not at all concerned about this though.

 

[Malika]

Social relationships are affected in ADHD kids primarily because of the impulsivity - can't wait their turn, can't deal with frustration, over-emotional, etc. I'm not sure I agree with IC about this because I also belong to a French forum for parents of ADHD kids and all you ever hear about are how the children have trouble forming friendships, are massively rejected, etc. My son is not quite in that category because he is very bright, sociable and gregarious and this goes some way to offsetting the problems caused by the impulsivity and hyperactivity.

Some of this obviously comes down to what one can live with. My son also cannot sit still at the table and eat a meal - he is usually fidgeting with something else, a toy, a book, etc; if he didn't do this I don't think he could sit still. I find it mildly irritating but I just accept it. I often find myself repeating things several/many times before he does them. It's just the way it is. I also avoid restaurants, supermarkets, crowded public places, etc where possible (though actually I have taken him into restaurants when travelling and he has been mainly fine). It is a shame but I don't regard it as a major handicap. I do my shopping when he is at school. I would love to be able to take him to places without him careering all over the place and touching everything but I'm not personally able to give him medications so that I can do that. My son is a lot less aggressive in terms of impulsive hitting and kicking than he used to be but he is still regularly overly-brusque and completely fascinated by fighting in general... he loves to play fight with other boys.

I don't mean to seem critical of you but the only truly alarming thing to me in what you list is the aggression towards other children. Is it at such a level that it is constant and unmanageable? How sure are you that it is not sensory overload that is triggering him rather than aggression per se? How would he fare in an environment with very small class sizes? Are medications truly the only option you have here?

 

[Chantillylace]

I don't mean to seem critical of you but the only truly alarming thing to me in what you list is the aggression towards other children. Is it at such a level that it is constant and unmanageable? How sure are you that it is not sensory overload that is triggering him rather than aggression per se? How would he fare in an environment with very small class sizes? Are medications truly the only option you have here?

I completely agree that the only thing that we can't handle without medication is the aggression. Everything else I can deal with and not medicate. The hitting isn't constant (it's probably an average of 2 days/week (several times in that day though). It is unmanageable though in that we have to pick him up from school, he's getting kicked out of schools, and he's hurting his friends.

I can't be positive that it's not sensory overload. His Occupational Therapist (OT) made a list of interventions for the classroom that his teacher has been implementing. He even has a weighted vest that he wears on a wear schedule, but actually... he seems to be growing out of most of the sensory issues over the last 6-8 months.

He's now at a private school with 15 kids in his class. I originally thought the class was going to be 12, but they had a bigger enrollment than they thought. Still, at 15 it's the smallest class size in the area. The next is 16 at another private school (which won't accept him if they kick him out where he's at now).

Are medications the only option? That's a good question. I wish it wasn't, but I feel like I've done everything else. I'm doing everything I can for him. He lives in an organized, well-planned out environment with loving parents that give him access to all of the interventions that he needs. I just don't know what there is more that we can do at this point. I feel like this is my last resort.

 

[InsaneCdn]

I wish someone had told me this years ago, but... I ran into this, sometime this year, doing research (like usual...):

Oppositional and defiant behaviours are typically rooted in anxiety or overload.

You do not know WHY he is behaving that way... but the WHY is vitally important.
Once you know the reasons, you can start making changes - and for most things, interventions and accommodations come way before medications. medications are sometimes necessary (don't look in my medicine cabinet!), but should never be the first resort (in my opinion).

Have you started a daily journal? And can school keep records, too?
It would really help to know the pattern of behavior, and you don't "see" that as you go from day to day - it shows up far more if you can look back over a few weeks or months. Is Friday worse than Monday? Is "field trip" day always a disaster? What happens if there is a sub? (that one works both ways... one year, difficult child was WAY better on sub days... turned out the teacher was working against all interventions and accommodations!... but some kids can't handle the transition between teaching styles) Are mornings better than afternoons? Is problem behaviour triggered by less structured time? or by being hungry or tired?

Have you seen the parent report format? It's on the site resources, I can never find it there... I just look for a recent post by Susiestar, because she keeps the link in her signature. That will also prove useful in the long run - he is young, it pays to start documenting early.

 

[Chantillylace]

I have been keeping a journal. I tried to find the parent report thing before, but the link didn't work I'll try again.

My kiddo is most definitely set off when he's hungry or tired, during transitions, and when he's bored (circle time included because he can't sit there and listen).

I've put him in a school that offers 2 different afternoon snacks... but I can't always force him to eat enough for breakfast so early in the morning; although, I try. So sometimes his issues are when he didn't eat a good breakfast. I pack his lunch, so I know he eats it well. He's always in bed and asleep by 8 pm. I've given his teacher input to help with transitions. She is supposed to be giving him a 1 minute warning before a change is coming (it seems simple, but it works miracles with my child) and I've drawn picture stories and schedules with him. As for the boredom ... well, that's just school and a kid with ADHD. I can't change that part.

 

[Malika]

Yes, I agree. Sounds like you have really tried a lot of things and you have thought this through.
Thing is, though, it also sounds like the medications are causing almost as many problems as they are solving. Did you read my post about Focalin not being recommended for children under six? I found SO many sites saying this should not happen... Do you know why it has been prescribed in your case?
It is all very easy from the outside, of course. But from the way you describe things, I personally wouldn't give up on the value of interventions and time to bring improvement without medications at this point. When is your son 5? What does the school feel about him continuing unmedicated?
How are his other social skills apart from this? What I mean by this is how well does he feel empathy, go towards other children, etc? I have seen in my son that two contrasting trends can co-exist - ie he is both socially handicapped and socially gifted... If your little boy is generally socially handicapped, I too would be wondering if it were something other than ADHD and that simply being in the presence of many other kids is overwhelming and unmanageable to him.
Just a few more ideas...

 

[soapbox]

(circle time included because he can't sit there and listen).​

I'm going to bring up a diagnosis that he is too young to be tested for... but not too young for you to be aware of. I saw it before difficult child was five... took 8 more years to get a diagnosis (long story), but it SHOULD be caught at about age 7 or 8 by official testing.

Auditory Processing Disorders (APD) - auditory processing disorders. There are multiple possibilities here - the classical version, most well known, is where the child cannot process verbal language well... but this usually results in problems speaking as well as listening, which should be more obvious. However, there's another handful, of which two are more familiar to me: auditory discrimination, and auditory figure ground.

Auditory discrimination is where the person has difficulty telling the difference between similar sounds. This means they have to spend extra effort trying to determine what is being said, before they can "process" the actual message.

Auditory figure ground is where the person does perfectly well working one-on-one in a quiet environment, but in a noisy environment (classrooms are notoriously noisy), they cannot pick out the "important" sounds such as the teacher's voice, unless they put in an extreme effort.

Auditory processing disorders CAN, in some kids, present symptoms similar to ADHD - not following directions, not paying attention, etc. But... the problem is that all of their focus is being spent on trying to catch the sounds... and nothing is left to process the message. It can generate extreme mental fatigue. If the teacher has a nice, soft, friendly voice... it is worse!

There are NO medications that have any impact on Auditory Processing Disorders (APD). Only accommodations and interventions, some of which work better as they get older - written instructions backing up any verbal ones, note taking service (so he doesn't have to listen and write at the same time), outline before class starts so he can follow what is happening and have context for what he is hearing, and so on. The only effective intervention I know of is a hearing system... either a soundfield system, where the teacher has a mike that is broadcast to the whole classroom, or a personal FM system where the teacher has a mike and the student has a hearing device - in either case, the sound from the mike being set so that it transmits at about 20 db louder than the background noise.

Does he fall asleep "before his head hits the pillow"?
Does he follow instructions well if you are working with him one on one, but gets "lost" in class?
How does he make out interacting with kids on a typically noisy playground?

 

[Chantillylace]

Yes, I agree. Sounds like you have really tried a lot of things and you have thought this through.
Thing is, though, it also sounds like the medications are causing almost as many problems as they are solving. Did you read my post about Focalin not being recommended for children under six? I found SO many sites saying this should not happen... Do you know why it has been prescribed in your case?
It is all very easy from the outside, of course. But from the way you describe things, I personally wouldn't give up on the value of interventions and time to bring improvement without medications at this point. When is your son 5? What does the school feel about him continuing unmedicated?
How are his other social skills apart from this? What I mean by this is how well does he feel empathy, go towards other children, etc? I have seen in my son that two contrasting trends can co-exist - ie he is both socially handicapped and socially gifted... If your little boy is generally socially handicapped, I too would be wondering if it were something other than ADHD and that simply being in the presence of many other kids is overwhelming and unmanageable to him.
Just a few more ideas...

I did read the post about Focalin and the use of kids under age 6. I suppose my thought process was that the reason it's not recommended is because there hasn't been enough research on it with that age group. I would assume that my doctor is reading the latest research and is basing her decisions from that. Also, I work with kids, several of which have ADHD. I know a handful of kids under age 5 on ADHD medication. I know one for sure who is 6 months younger than my son that is on Focalin as well. So, my doctor isn't the only one prescribing it.

My son will be five in less than 4 months. The school is basically saying that we are on a probationary period while we try the medication. If changes don't happen, then he will be asked to leave.

His primary problem with social skills that we're working on right now is saying hi. Because of his impulsiveness, he just runs up to kids and says hi in innappropriate ways (pretending to "shoot" them with a gun from his fingers, showing them something like his shoes, or making animal noises). He actually has a lot of little friends right now that he loves to play with.

I definitely agree that the major problem is the high-stimulant environment, but I can't pull him out and homeschool him. It's just not an option financially... and you might see our pictures on a milk carton.

 

[Chantillylace]

Auditory Processing Disorders (APD) - auditory processing disorders. There are multiple possibilities here - the classical version, most well known, is where the child cannot process verbal language well... but this usually results in problems speaking as well as listening, which should be more obvious. However, there's another handful, of which two are more familiar to me: auditory discrimination, and auditory figure ground.

Does he fall asleep "before his head hits the pillow"?
Does he follow instructions well if you are working with him one on one, but gets "lost" in class?
How does he make out interacting with kids on a typically noisy playground?

As for the Auditory Processing Disorders (APD). I'm a speech pathologist. I really, really don't see issues in this area. I've seen plenty of kids with Auditory Processing Disorders (APD), and it just doesn't fit with my kiddo.

No, he doesn't fall asleep quickly. It probably (lately) takes him about 10 minutes. The time change really helped because he was staying up in his room up to 30 minutes before he'd fall asleep, but that has stopped recently.

No, he doesn't follow instructions well one on one at all. When doing his "homework" with him he almost gives up before we start. I have to say, "Well, I'm going to do your homework... do you think you could help me?" to get him to do it.

He does okay most times out on the playground. His problem there is his sensory issues though. It's hard to explain, but his sensory issues are movement/vestibular (primarily... although he has others) so this affects playing on playground equipment and things like that.

 

[DDD]

I rarely visit this forum but I noticed the topic and decided to read a bit. Seriously I am, of course, against using medications with small children before they are needed BUT from experience I know that some children need stimulant help before they reach the "magic" age of six. Have you tried other medications to see if you have better results? In our family (spanning almost fifty years and four ADHDers) we have used multiple Rx's. None of the stimulant medications required titration as they were all quick in and quick out. Ritalin was the first and followed by extended release Ritalin, followed by great success with Concerta, Tenex (which is not a stimulant and does have to be carefully titrated in and OUT) and a combo. We had no appetite issues for breakfast or for dinner although lunch was often impacted.

in my humble opinion if a child is being singled out as a "trouble maker" at age four or five the residual effects often carry forward like a negative label can. As a result integration into the social events of the peer group get waylaid etc. In an ideal world none of our children would ever need medications but sadly many of ours do.

The only suggestion or suggestions I would make to you is using a child Psychiatrist and not a Pediatrician for this issue. Only a child Psychiatrist is likely to be fully aware of the multiple choices for treatment. Subsequently when your child is just a little older I would suggest a complete Neuro/Psychological evaluation. You are a smart woman and a dedicated Mom so keep your confidence. Hugs DDD

 

[Malika]

I did read the post about Focalin and the use of kids under age 6. I suppose my thought process was that the reason it's not recommended is because there hasn't been enough research on it with that age group. I would assume that my doctor is reading the latest research and is basing her decisions from that. Also, I work with kids, several of which have ADHD. I know a handful of kids under age 5 on ADHD medication. I know one for sure who is 6 months younger than my son that is on Focalin as well. So, my doctor isn't the only one prescribing it.

I suspect it is optimistic to imagine that the doctors are prescribing Focalin on the basis of research - more likely that they are prescribing it despite lack of it... But it's your call, obviously.

In any event, Focalin seems to be having an alarming effect on him so I imagine you will be discussing at least a change of medications with the psychiatrist?