A Bedtime Stimulant for ADHD?

Most parents of children with ADHD are familiar with stimulant medications. These include medicines in the ritalin and adderall family. There are many brands and formulations, but they are given in the morning and wear off at some point in the day. One of the problems is that when kids wake up, they are not medicated, which makes getting out the door a daily struggle. There’s a new technology that’s designed to allow medicine given at night to start working in the morning. This is different from the non-stimulant ADHD medicines that are used at night. Is a bedtime stimulant right for your child?

Disclaimer

As this was only recently announced and is not yet on the market, I have no experience in using this novel medicine. I wanted to learn about it and thought I’d share what I learn, but I am not promoting its use since I have no experience with it.

I want to caution people who it will take quite awhile before this will be covered on insurance plans and available for mainstream use. It’s good for parents to be aware of what’s in development, which is why I’m writing about as I learn, but you must talk to your own physician about what medications are right for you or your child.

Most of the information about the new medicine is from the company that is developing it, Highland Therapeutics. This is not an unbiased source.

Stimulant vs Non-stimulant medicines

You might know kids who have ADHD medicines that already work in the morning, so you might be wondering what benefit this new system offers.

The non-stimulant medications can continue to work in the morning. This new delivery system is for stimulant medicines. For many kids, the stimulant medicines simply work better for the majority of the daytime hours, even though they don’t last as long as the non-stimulants.

For more on ADHD medications, see ADHD Medications: Types and side effects.

New formulation of methylphenidate

The FDA has approved Jornay PM, a medication that uses a new drug delivery system for methylphenidate, one of the two main stimulants used for ADHD. The company that makes this, Ironshore Pharmaceuticals, is also working on one for amphetamine, but it has not yet been approved.

Jornay PM is expected to be available in the first part of 2019. This does not mean that your pharmacy will stock it or that insurance will cover it. I do not know how it will be priced, but typically new medicines are expensive.

Methylphenidate is the active ingredient commonly referred to as ritalin. For many years we have had short acting and long acting forms of ritalin to use for people with ADHD. The short acting medicines generally last 3-4 hours and the long acting last 6-12 hours.

The new formulation of methylphenidate in Jornay PM is designed to be given at night so that it begins to work in the morning. The time release will allow the child to fall asleep without any of the active ingredient taking effect until several hours later. The idea is to figure out the timing so that when the child wakes, the medicine is already taking effect.

Why is this needed?

Many parents of kids with ADHD know the struggle of getting out the door in the morning.

While many kids can be expected to follow the morning routine of getting up, eating breakfast, brushing teeth, and dressing, kids with ADHD often get lost in this process. Every day.

The distractibility is not their fault. Getting ready in the morning requires many steps. Anything that requires time management and organization is difficult for people with ADHD.

The medicines they take typically take to help with these functions take about an hour to take effect. They need this medicine to be able to stay on task and help with executive functioning skills, not just to do school work.

There are certainly things that can be done to help that don’t involve medicine.  Many kids benefit from putting clothes out and packing backpacks the night before. Charts with all the daily expectations can help kids visualize what needs to happen.

But they still struggle to stay on task without medicine. They often run late. Families fight despite the best intentions. When kids finally get out of the door, homework or needed materials are often forgotten. Self esteem is impaired with these daily struggles.

Many parents ask for help with morning struggles

Some kids have benefited from a non-stimulant for this purpose. Non-stimulants, such as guanfacine, clonidine, and atomoxetine, can be effective upon waking. Guanfacine and clonidine can help kids sleep as well, which is an added bonus to kids with ADHD, since many struggle with sleep issues. These medicines can be used alone or with stimulant medicines, but they aren’t effective for everyone.

Other parents have snuck into bedrooms to put a methyphenidate patch on their child so it starts to work before the child wakes. While this works well for kids that respond well to methylphenidate, they are very expensive and many families cannot afford them. Some kids don’t like wearing a patch or they get skin irritation from them.

How does this work?

Jornay PM uses a delivery system called DELEXIS. In this system the beads with medication inside resist water and dissolving.

The beads do not release any medicine immediately. They travel through the small intestine without dissolving for about 10 hours. When they reach a part of our intestine called the ileum, they are able to start dissolving.

The medicine will be effective for many hours once it starts to be released. The delayed release layer starts to provide medicine about 10 hours after ingestion. Specific timing is affected by foods and drinks taken in the evening. It is recommended to be consistent with eating and drinking when taking this medicine.

Inside the bead deeper than the delayed release layer is an extended release layer. This releases the medication even later than the delayed release layer, to provide for many hours of benefit.

About 14 hours after ingestion starts the maximum concentration of medication levels. Absorption of the medication continues through the early evening.

Will it be right for your child?

All of this sounds great for the kids who need help from the first thing in the morning until later in the evening, but I will wait to see how it really works. We’ll all have to wait to see if it works as stated or not.

Will this new delayed medication delivery system benefit your child?
Will this new medication delivery system benefit your child?

 

 

ADHD Medications: Starting out and titrating

I have spent many days covering a lot about learning and behavioral problems. Topics covered include why and how to get these issues diagnosed, who is involved in the diagnostic process, and treatment options with diet, supplements, and alternative treatments. Yesterday I covered what prescription medications are typically used and side effects they may cause. Today I’ll discuss common ways to choose a medicine, how to titrate it to a proper dose, and when to change to something else.

Tomorrow will discuss final thoughts on how to remember medicines, if it’s okay to take days off, and what to do if parents disagree about the treatment plan.

Getting Started


starting ADHD medicinesThe first step in treating ADHD is getting a proper diagnosis. This should be done with input from parents and teachers since symptoms should be present in at least two settings. ADHD symptoms overlap with many other conditions, and if the diagnosis is not correct, medications are more likely to cause side effects without benefit.

Do not jump into medication until the symptoms have been fully evaluated and a proper diagnosis is made according to DSM criteria.

Stimulant medicines

Stimulant medicines are considered first line treatment for ADHD in kids over 5 years of age.

There are short acting and long acting formulations available for each type of stimulant. There are advantages and disadvantages to each.

Short acting medications tend to last about 4 hours, so can be given at breakfast, lunch, and after school, allowing for hunger to return as each wears off to help kids maintain weight. Short acting stimulants are often used later in the day after a long acting stimulant wears off for teens who need longer coverage.

Long acting medicines tend to last between 6 and 12 hours, depending on the medicine and the person’s metabolism. The benefit is that people don’t need a mid-day dosing, which for school kids means avoiding a daily trip to the school nurse. This can be socially unacceptable for older children. It is also easier to remember once/day medication versus multiple times/day dosing. The downside is that some children don’t eat well midday with long acting medicines.

Which stimulant medicine to choose?

Methylphenidate vs Amphetamine

While some children respond better to methylphenidates, others to amphetamines, some do equally well on either, and some cannot tolerate either.

It is not possible to predict which children will do best on any type, but if there is a family history of someone responding well (or not) to a medicine, that should be taken into consideration of which to start first.

Swallowing Pills

Another thing to consider is whether or not a child can swallow a pill.

Some of the medicines must be swallowed whole.

If you aren’t sure if your child can swallow a pill, have them try swallowing a tic tac. Use a cup with a straw, since the throat is narrowed when you tilt your head back to drink from an open cup.

Another option is to put it in a spoonful of yogurt or applesauce and have your child swallow without chewing.

If your child cannot swallow a tic tac, you can choose a medicine that doesn’t need to be swallowed.

Some come in liquid or chewable formulations. Some capsules can be opened and sprinkled onto food, such as applesauce or yogurt. There is a patch (placed on the skin) available for the methylphenidate group.

Genetic testing

I’ve met many parents who request “the lab to say which medicine will work best.”

There is no lab that does this.

Many companies promote that their genetic test can predict which medicine will be best tolerated, but in truth they do not predict which will work best to maximize treatment and minimize side effects.

There are pharmacogenetic tests that will help to identify if a person has an issue with metabolism that would require a higher or lower than typical dose, but it does not tell which medicine will work best. It also doesn’t verify the diagnosis, so if the diagnosis is incorrect, no medicine is the right one.

Pharmacogenetic testing for ADHD (and other conditions) is still relatively new. It has the potential to significantly change the medication treatment process, a term called Personalized Medicine. Personalized medicine needs to be further validated and its precision improved before it becomes mainstream.

Insurance

I would love to say that cost shouldn’t matter, that we pick the medicine based purely on medical benefit, but cost does matter. Insurance often dictates which medicine we choose. 

Before you go to the doctor to discuss starting medicine look at the formulary from your insurance company. All other things being equal, if one medicine is not covered at all (or is very expensive) and another is covered at a lower tier, it is recommended to try the least expensive option first.

Of course, if the least expensive medicine fails, then a more expensive one might be the right choice. 

Not knowing which will work best in any individual, choosing the least expensive makes sense. Sometimes all approved medications for ADHD are expensive. If that’s the case, see Affording Medications for tips on finding the best price.

Generics historically have been the least expensive, but that isn’t always the case. You must know your insurance formulary to know the cost.

The ADHD Medication Guide is a great resource to look for generics (marked with a “G”), which must be swallowed whole or can be opened or chewed (see the key on page 2).

Age indications

The age indications listed on page 2 of the ADHD Medication Guide are those that have FDA approval at the ages listed, but there are many times that physicians use medicines outside the age range listed.

Some do not even have an age indication listed. These ages are due to testing results, and can be limited because one age group might not have been tested for a specific medicine.

Note that the 17 year and adult medicines are different. Is there really a difference between a 17 and an 18 year old? Not likely.

start low and titrate to best effect

In general it is recommended to pick one of the stimulant medicines and start low and titrate to best effect without significant side effects.

Feedback on how the child is able to focus and stay on task, and reports of other behavioral issues that were symptoms in the first place should be received from teachers and parents, as well as the child if he is able.

There are many things to consider that affect focus and behavior that are not due to the medicine: sleep, hunger, pain, illness, etc. It takes at least a few days to identify if the medicine is working or not or if other issues are contributing to the focus and behaviors.

The younger the child is the longer I usually advise staying on a dose so a parent has a chance to hear from the teacher how things are going. I usually don’t increase faster than once/week in younger kids.

I rely more on the student’s report in middle and high school, since those students can be more insightful and they have so many teachers throughout the day that most teachers are not as helpful. Older students who are in tune with their problems and how they are responding to the medicine might be able to increase every few days, as long as there are no confounding factors that could influence symptoms, such as change in sleep pattern, big test or other stressor, or illness.

Finding the right dose

It is recommended to start with one of the two main classes of stimulants with a low dose, and slowly increase to find the best dose.

Continue to increase until either symptoms are well controlled without significant side effects or side effects won’t allow another increase.

If that stimulant doesn’t work well or has side effects that are not tolerated, then change to the other class of stimulant.

If that one does not work, you can try a different medicine from the class of stimulant that worked best.

If the third medicine doesn’t work, then a non-stimulant can be tried.

I recommend re-evaluating the original diagnosis if the third medicine doesn’t work, since ADHD might not be the cause of the issues and finding the right cause can lead to a better treatment.

Titrating the medicine goes something like this:
  • If symptoms are well controlled and there are no significant side effects, the medicine should be continued at the current dose.
  • If symptoms are not well controlled and there are no side effects that prohibit increasing, the dose should be increased as tolerated.
  • If symptoms are not well controlled (i.e. room for improvement) but there are side effects that prohibit increasing the medicine, consider a longer period of watching on this dose versus changing to a new medicine.

 

Before your visit:

Before you meet with your physician to discuss a new ADHD diagnosis or a possible change in treatment plan, be sure to get the following information and have it available at the visit or the visit will not be as productive as you desire:

  • Insurance formulary
  • Standardized testing from teachers, parents, and other significant adults
  • Verify if your child can swallow a tic tac or pill
  • Any contributing family history (family member responses to medications, family history of heart issues, etc)
Tomorrow there will be more on fine tuning ADHD medications.

Looking for more?

Many parents benefit from support groups to learn from others who have gone through or are currently going through similar situations, fears, failures, and successes. Find one in your area that might help you go through the process with others who share your concerns. If you know of a support group that deserves mention, please share!

ADHD

CHADD is the nationwide support group that offers a lot online and has many local chapters, such as ADHDKC. I am a volunteer board member of ADHDKC and have been impressed with the impact they have made in our community in the short time they have existed (established in 2012). I encourage parents to attend their free informational meetings. The speakers have all been fantastic and there are many more great topics coming up!

Anxiety

Many parents are surprised to learn how much anxiety can affect behavior and learning. To look for local support groups, check out the tool on Psychology Today.

Autism

The Autism Society has an extensive list of resources.

Dyslexia 

Dyslexia Help is designed to help dyslexics, parents, and professionals find the resources they need, from scholarly articles and reviewed books to online forums and support groups.

Learning Disabilities 

Learning Disabilities Association of America offers support groups as well as information to help understand learning disabilities, negotiating the special education process, and helping your child and yourself.

Tourette’s Syndrome and Tic Disorders 

Tourette’s Syndrome Association is a great resource for people with tic disorders.

General Support Group List 

For a list of many support groups in Kansas: Support Groups in Kansas .

School information

Choosing schools for kids with ADHD and learning differences isn’t always possible, but look to the linked articles on ways to decide what might work best for your child. When choosing colleges, look specifically for programs they offer for students who learn differently and plan ahead to get your teen ready for this challenge.

Midwest ADHD Conference – April 2018

Check out the Midwest ADHD Conference coming to the KC area in April, 2018. I’m involved in the planning stages and it will be a FANTASTIC conference for parents, adults with ADHD, and educators/teachers.

Midwest ADHD Conference
The Midwest ADHD Conference will be held in April 2018, in Overland Park, Kansas.


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