INTRODUCTION
There is a lot of information to digest about the treatment of ADD/ADHD and it can be overwhelming. I have done my best to make these concepts as clear as possible. I learned a long time ago that each child with ADD/ADHD is an individual and requires individual adjustment of their care. Most children with ADD/ADHD will respond well with minimal adjustments and no side effects, but there are a significant number of individual details and issues that come up that I handle on a routine basis. I have attempted to cover the most common issues and questions, but do remember I will always be available for questions and adjustment of care. It is simply impossible for you to learn all of this information at one sitting. Please read this entire document once. Then go back over specific questions you might have before our first office visit to start a medication. Please keep this document for future reference just in case yours is one of those rare children that requires a bit of individual adjustments. Some of this information may appear repetitive, but there is usually a good reason for that.
What effect should we expect to see from medical management?
Attention deficit disorder (ADD) is just that, a shortage of attention span. We are looking for the attention span to be the same as any other child. Therefore, your child should be less distractible, stay focused longer, and be less impulsive (if they have ADHD). Improved impulsivity is often seen after the attention span gets better. WE ARE NOT LOOKING FOR YOUR CHILD TO “BEHAVE” BETTER, we are looking for them to pay attention to parental guidance better (very carefully chosen and appropriate words). Imagine learning to play the piano, but you can’t see the notes on the music because you need glasses. The medicine is like the glasses, in that your child will be able to “see or focus better on” the notes. But they still have to learn to play the piano or chose to “behave”. It is absolutely essential that you communicate effectively with your child’s teacher about the effects of the medication. The medicine is mainly meant to help their education during school hours when you are not present to see the effect. Another concept is that of impulsivity. An impulsive child may quickly act / decide / do something they should not be doing and then regret it immediately afterwards. Their regret is not because of getting in trouble, but of having difficulty controlling that impulse to do something they should not have done. The medicine will help your child focus or concentrate so they don’t quickly react inappropriately. The medicine should not slow or dull their thinking or ability to act in a way they want to act. If your child is “sedated” or turned into a “zombie” by the medicine, then that is a side effect we will not tolerate. Please be very careful to separate these effects from each other.
How do we adjust the medication?
We want to use the lowest EFFECTIVE dose for your child to minimize any potential side effects of the medicine. Our goal is a normal child with no side effects, and this is what we usually achieve. We start with the lowest possible dose for the medicine we chose. We then give it for a week and evaluate the effect over that week. We only adjust once a week because your child is going to have good and bad days and we don’t want to make an adjustment based on a single good or bad day, rather we want to adjust on the average. Also, some medication will give minor side effects if we raise the dose too quickly. If the medicine is not doing what we expect, then we go to the next dose for the next week and do the same thing until we get the dose right or a side effect shows up. If a MINOR side effect shows up, then continue at that dose because MINOR side effects tend to go away as you get used to the dose. If you see a moderate to bad side effect, then stop the medication and the side effect should go away in 6-12 hours. If this happens, then do not give any more of the medicine and call me.
Let’s go over some basic concepts.
- 2 out of 3 children will do well on the first medication we try, but 1 out of 3 children will not. Approximately 1/3rd of the second medication trials will also fail, and so on. A small percentage of kids will have to try 2 or 3 medications to get to the right one for them.
- Long acting medications can cost as much as $3-400 per month. Most of these medications are actually about the same cost. Most insurances cover these medications, but have formularies with a significant out of pocket cost difference from one medication to the next. Because of all this, we usually first try whatever long acting medication is cheapest through your insurance. If the “preferred” medication fails, then the insurance will typically cover everything else once we explain to them that their “preferred” medication failed. PLEASE READ AND UNDERSTAND YOUR INSURANCE COVERAGE BECAUSE THERE ARE SIMPLY TOO MANY FOR US TO KEEP TRACK OF. Many insurance companies have a web site you can log onto with your specific information that can give you exact costs for any medication. Insurance companies also change their formularies from time to time. I will certainly make every attempt to adjust your child’s treatment in the most cost effective manner possible based on your situation.
- Whatever medication we chose, it will take from 10-30 days to reach the best dosage. With the stimulants, we start at the lowest dose and increase by a small amount each WEEK. We increase the medication slowly to reduce the chance of a side effect. Kids also have good and bad days and we want to judge the medication effect based on the average of several days observations. In doing this we will generally achieve the lowest effective dose rather than an over-medication issue.
- The first medications to be used for ADD/ADHD were short acting stimulants, lasting 4 hours at best. Since the short acting medications only lasted a few hours, we have to give a dose in the morning, a dose at lunch and occasionally a dose after school. The short acting brand names are: Ritalin, Focalin, Adderall, Dexdrine, and Methylphenidate. There are obvious issues with giving a medication at school, thus the long acting medications were developed.
- Long acting medications came out around 2001. The long acting stimulants are only long acting by either slowly releasing the short acting medication through a special capsule (Concerta) or through a slow release resin binding process (Ritalin LA, Focalin XR, Adderall XR, Metadate CD and ER). The long acting medications can work from 7-9 hours. Strattera is a non-stimulant that works 24 hours a day (usually, there are exceptions noted later). Another exception is Vyvanse, which is chemical attached to it that has to be metabolized in the liver to work. Vyvanse is metabolized into the active ingredient in Adderall. One advantage to Vyvanse is that it does appear to work a little longer than other stimulants. Another advantage of Vyvanse is that it has to pass through the liver in order to work, meaning it can’t be diverted for elicit use by snorting or injecting the medication to get high. The insurance companies often like this medication for that reason. Vyvanse can also be poured into a liquid to give it, while NO other ADD medication can be used this way.
- The only time I currently recommend a short acting medication, is if the long acting ones are not working or have a side effect, especially insomnia or belly pain. I also recommend short acting medication because they are much less expensive than the newer long acting medication. If your insurance does not cover the long acting ones or it does not cover the one that works best for your child (all insurances have formularies than limit our choices here), then a short acting cheaper medication may appeal to you. Do remember that if your child is on a short acting medication in the morning, they WILL HAVE TO take a lunch time dose. We can also not use long acting medications before 6 years of age due to formulary rules.
- ANXIETY and ADD/ADHD: This topic deserves some special mention. Sometimes ADD/ADHD also includes some minor anxiety symptoms and sometimes kids with ADD/ADHD happen to have separate anxiety disorders.
- A child with minor anxiety from ADD/ADHD will simply be anxious because they are not concentrating well. In these kids, the regular medication for ADD/ADHD makes that anxiety better.
- In the child with a separate or more significant anxiety disorder, their anxiety will be worsened on the stimulant medications and usually not helped on Strattera. If this happens, then stop the medication and call. We will most likely have to treat the anxiety first and then come back and treat the ADD/ADHD. Some children with significant anxiety disorders simply look like they have ADD/ADHD because you can’t concentrate if you are worried. BUT the testing we did before prescribing any medication usually identifies those children. This is a more complex subject best discussed, but rest assured, we will be able to help.
Now lets looks at individual medications.
- Stimulants: The stimulant medicines have been the first line therapy for over 50 years and we have a lot of experience with them. Most kids can do well on any of these medications. One problem is that there is no way to tell which is the best medication for a specific child until they are tried.
- Focalin is a stimulant that requires some special mention. If you were able to see a stimulant medication under a microscope, you would see a 3 dimensional structure with a twist. Imagine a candy cane with the red line twisted around the white center. Nature actually makes 2 copies, one twisted clockwise and the other counter clockwise. It turns out that one of those copies is active and the other inactive. But the inactive one sometimes has side effects. Focalin is simply Ritalin with one of the copies removed. It is generally dosed at half of the equivalent Ritalin dose and sometimes gives less side effects than Ritalin.
- Strattera: Strattera is a Norepinephrine Uptake Inhibitor, which affects nerve signal transmission in the brain. Strattera is meant as a first line medication for ADD/ADHD, is not a stimulant, is taken once daily, does not usually need adjustment of the dose, and has no abuse potential. Strattera comes in 10, 18, 25, 40, 60, 80, and 100mg pills. The pills are best swallowed whole as the medicine does not taste good sprinkled on food (I do have a few patients that have taken it this way). Strattera can be formulated into a liquid by a formulating pharmacist (Travilians in Kanawha City). One special note about Strattera. The dose of Strattera is typically 1.2-1.4 mg/kg/day. We start with low doses of Strattera and build to this calculated dose to reduce side effects from starting too quickly, not because lower doses might work. With stimulants, ANY dose CAN work. With Strattera, doses below 1.2 mg/kg/day almost never work (there are always rare exceptions to everything).
- BLOOD PRESSURE MEDICATION: Yes, blood pressure medication. There are many medicines that have multiple uses, like aspirin for pain / fever / heart attacks, etc. Clonidine and Guanfacine are 2 blood pressure medications that just happen to be very useful for ADD/ADHD (and sleep, mood instability, tics). From experience, these two are not my first choice, except in certain circumstances. I have many kids whom do great on these medicines alone for ADD/ADHD, but more often I use them as second medications for symptoms not completely controlled by other medications. Typically these children have co-morbid conditions such as Oppositional Defiant Disorder (ODD), Autism, Mood Instability, or insomnia. In most cases, Guanfacine can last most of the day and is given as either 1, 2 or 3 mg. It rarely causes side effects, it simply only works in a certain percentage of kids. Both medications can cause Orthostatic Hypotension. This means if you stand up too quickly, you can drop your blood pressure and get lightheaded or pass out. I HAVE NEVER SEEN ONE OF MY PATIENTS PASS OUT WITH THESE MEDICATIONS. Children seem to be less likely to have this than adults. We start with a very low dose and go up slowly. We also have the child drink more water and get up slower than usual when first starting or adjusting a dose. If a child have a mild version of this side effect, it almost always disappears as the child adjusts to the medication. If not, then we stop it. I have simply not seen this to be an issue in my patients. Clonidine can occasionally cause sedation in the first few days after starting the medication. In most cases this resolves by 5-7 days. If it does not, then we stop the medication. I tolerate no side effects with either of these medicines.
- Wellbutrin XL: bupropion / Wellbutrin has recently been approved specifically for ADD/ADHD. It is an anti-depressant also used for anxiety and depression and even smoking cessation. In cases where a child has anxiety and ADD/ADHD, this may be a good option that will treat both. This sounds appealing, but from experience, this medication only appears to work well under 50% of the time in these combination cases. I have wonderful examples of it working for both.
- Qelbree - This has only recently been approved just for ADD/ADHD. It is in the same class as Strattera and Wellbutrin except it also affects dopamine. There are definitely patients whom this may be great for, but since its new there are some issues. First, insurance does not cover it. You can get a low cost discount card from the manufacturer for a year. Few are hoping this will increase demand as its proven effective, but it’s quite expensive to pay for out of pocket. Second, since we have so many good and effective medications for ADD/ADHD, I am hesitant to use something new except in specific circumstances. I have patients on every one of these medications in every combination imaginable and will use this medication as time goes by.
MINOR SIDE EFFECTS of the medicines
Most children do very well on these medicines without any side effects.
- The most common side effect of the stimulant medicines is appetite suppression. Many of these children will drop a growth curve on the growth chart, but then will gain weight as fast as any child in that growth curve. The majority of kids we start on stimulants are overweight to begin with and simply drop their weight into a more normal growth curve. I recommend the child receive a large calorie breakfast including some meat. DO NOT expect the child to eat much lunch at all. Most children will eat a large dinner and have some snacks at night after the medications wears off.
- The stimulant medicines can worsen involuntary muscle tics (such at eye blinking, facial or neck twitches). Some children have this disorder so mildly you cannot tell they have it, then after starting the medicines it worsens. We use to stop the stimulant medications if tics occurred, but now think the medicine is ok to use with tics. ADD tends to start at 4-6 years of age and tics tend to start at 6-8 years of age. Stimulants do not cause tic disorders, they simply amplify them sometimes and are often prescribed before tics usually show up. Tics are a separate issue we will discuss individually if they occur.
- Stimulant medicines can increase blood pressure, but we are very careful to watch for this and slowly increase the medicines. In my first 30 years of private practice, I did not see a single child get high blood pressure from these medicines.
- Sleep issues are common with children with ADD/ADHD regardless of the medication. Giving the medicine later in the day can increase sleep issues. Most children do well with a ROUTINE and CONSISTENT bedtime ritual and BEDTIME, which should be the same on weekends and weekdays. 30 minutes before bedtime should be a wind down period with no eating, bathing, playing, screen time, or any stimulation that may keep the brain awake. If all else fails, then a dose of over the counter, brand name melatonin usually helps. The dose is best given 1 hour before bedtime. Start with half the adult dose and if that does not work then try the full adult dose. If you are still having issues with sleep, I have many other things to help.
OTHER SIDE EFFECTS of the medications
You should not see or tolerate any more significant side effects.
- If the dose is too high, children act sedated like zombies. This is never a side effect we should tolerate and the dose should be reduced. If we reduce the dose and it becomes less effective, then we will change the medication. Stop the medicine and call the office to discuss.
- Belly pain is usually mild and most often consists of just appetite suppression. If the belly pain is significant and does not get better as we give it with food or adjust the dose, then we will need to stop the medication. Call the office to discuss if this happens.
- Aggitation/ Anxiety should never be seen during the effective time of the medication (1-6 hours after the dose is given). When the medicine is wearing off in the evening, a child might be a little agitated because the medication is wearing off too quickly (addressed elsewhere, please call to discuss if this keeps happening). The agitation / anxiety I am describing is during the time the medication should be working from 1-6 hours after the dose is given. If this happens, we are either having a side effect of the medication and need to change it, or your child has some anxiety that might be a bigger issue than we thought. Please give the medication again to ensure that it is the medication causing it, that is was not something else in life causing it, and call me to discuss.
Logistic issues with ADD medication
There are a few logistic issues with stimulant medications due to state and federal regulations that you should be aware of.
- We can only write for a 1 month supply at a time. The only exception is for 90 day supplies to mail out pharmacies once the patient is stable on a medication.
- We cannot put refills on a prescription for controlled substances (stimulants). You must communicate with us monthly for refills. We prefer you communicate with us for this reason via the online portal.
- The prescription must be filled within 3 days of the date on the prescription and the next prescription cannot be filled sooner than 27 days after the last prescription was filled (unless the dose changed due to us adjusting the dose).
- Please be courteous and do not wait until the day you run out of the medicine to communicate with us for a refill.
- Your child must be seen at least every 6 months for a visit to specifically address ADD/ADHD. This visit can be a check up, then 6 months later a medicine check and then 6 months later the next check up and so on. This is a new legal requirement and no exceptions are allowed.
- The medications must be slowly increased with close monitoring by phone to get to the right dose.
- Make sure to keep the medicines locked up away from small children as an overdose of any of these can cause serious harm.
- Some of these medicines are abused illegally and therefore you should keep them in a secured location.
HOW EXACTLY DO WE START MY CHILD ON MEDICATION
- When you first start the medication, you will most likely not see any effect. We have to slowly increase the medicine until we get the benefit. Once the medication is working, it should be working 45-60 minutes after the dose is given.
- Once we get the medication to start working, we next want to increase the dose until it works all through the school day. In most cases, the long acting medication will last through the end of school.
- Once we get it to work all through the school day, then that is all we have to do in the majority of cases. Do recognize that our priority is helping your child’s symptoms as they pertain to school. About 10-15% of children on a long acting stimulant will require an after school dose. One concept is that the medication abruptly leaves their system after school, kind of like a hang-over or withdrawal effect. Another concept is that once the medication is no longer working, they are simply back to their baseline behaviors and this still causes functional issues in the evening. If we try to give higher and higher doses in the morning, the medication will not last past 3-4pm in the afternoon, but will instead start to give an over dose situation during school hours. In most of these cases, adding a small short acting dose after school will smooth out the evening affect and fix the problem. Giving a long acting dose after school will often cause the child sleep issues because it lasts too long. Two long acting doses a day is generally not allowed by insurance companies unless we need a combination of mg to get to a specific dose that is not available.
- WEEKENDS: (this only applies to stimulant medication, everything else must be given daily) Here is where ADHD and ADD have their biggest difference. Children who suffer from the impulsive / hyperkinetic part of ADHD often have significant issues with paying attention to their own safety, parental guidance, and significant issues with non-verbal communication causing them problems with interpersonal relationships / friends.
- I recommend parents give the medication every day of the week until we get the dose right.
- Once the child is stable on a dose, then give the medication on one weekend day and not the other. Pay particular attention to safety, ability to pay attention to parental guidance, and interaction with friends and relatives.
- If the parent feels that the child functions significantly better on the medication on weekends, then it is best given every day. And if the parent sees no real difference, then it is not necessary to give the medication on weekends and holidays.
- Some parents may still chose to give the medication on non-school days for important functions where they feel the child will function better with the medication. Such days might include a special sporting event, trip to museum or amusement park, etc.
Strattera: Strattera will have no effect until about a week after your child starts taking the calculated final dose. For instance, if your child should end up on 60mg, then we will give 5 days of 18mg, 5 days of 25 mg, 5 days of 40mg, and then 2 weeks of 60mg. You should stay in contact with the teacher about the effects and possible side effects, but DO NOT expect to see any benefit until after day 5-7 of the final calculated dose. Therefore, communicate with us about a week after starting the final dose, with the effects of the medication. Strattera also MUST be given during or at the end of a meal, NOT BEFORE THE MEAL OR ON AN EMPTY STOMACH, and a meal does not mean a small snack. If you do not give the medication during or after a meal, then it WILL cause belly pain. Since Strattera is a 24 hour a day medication, you can give it with dinner. Also, some children have minor sedation or sleepiness in the first few days of starting Strattera. If this side effect lasts more than 3 days, then call us. There are rare children that do better with Strattera given in the morning versus afternoon and rare children that do better with the dose split into 2 small doses a day, these are things we will discuss if we are not getting the effects we want.
