Remembering Medications

Compliance taking a daily medication (or vitamin) can be troublesome for many.  I find myself counseling parents and kids how to remember medicines often.

Here are my favorite tips:

Use a pill box for pills

Pill boxes come in various sizes and either single daily dosing or am/pm dosing, depending on your needs.

Pill boxes allow you to:

  • be sure you have enough for the upcoming week
  • remember if they were taken today
  • keep several types of pills for each day together if taking more than one pill

Liquid medicines

Wash the syringe after each use.

Put it where you’ll see it. Remember the medicine needs to be out of reach from kids… not necessarily the syringe!

Empty the dish drain of all contents daily so you find the syringe and remember to use it.

Or put a clean syringe in visible sight where you often look. Tape it to the milk jug. Put it in a glass next to the kitchen sink or in a glass near your coffee pot.

Grab a pen/marker and draw a “calendar” (Mon am/pm, Tues am/pm, …) on the bottle with space to check off when you’ve given the medicine each day.

Refrigerated medicines

Put the medicine on a shelf that is eye-level, right in front. Don’t let it get pushed to the back.

Return the bottle to the fridge before giving the medicine to lessen the chance you leave it on the counter.

Remind older children who can access the refrigerator that the bottle is off limits!

Keep it where you’ll see it – but out of hands of kids

Keep medicine next to something you do daily (coffee, toothbrush) only if your kids are old enough to respect that it’s medicine. Use associations if you can’t put the medicine itself there.

Make associations with other objects

Use a specific glass that is unique that goes from table to dishwasher to table and never is put away.

Every time you empty the dishwasher, put water in the glass and set it on the table for medicine.

Refill the medicine 1 week before you run out

This allows you flexibility in case you forget to pick it up.

It also allows recognition that there are no refills if that was missed, giving one week to see your doctor.

You can have enough for vacations if you routinely do this, since you can only fill one week earlier than the last fill… plan ahead if traveling!

Keep tabs on number of refills left

The pharmacist should let you know with each refill how many are left. If there are none, call right then to set your next appointment if you haven’t already.

Regular prescription medications goes hand in hand with regular follow up with your doctor to manage the medication dosing. This is important for many reasons, so I try to give as many refills that will be needed until the next visit.
Ask your doctor how they handle refills before the medicine runs out so there are no delays in treatment.

Travel

If you travel often, it helps to keep an empty pill box in your toiletry bag, so when packing it you see the empty box that needs to be filled.

Or you could put a sticky note in the toiletry bag reminding you to pack them.

Use technology

Set your phone or watch to alarm at the times the medicine is due.  Change the tone to one that is unique to remind you.

There’s an app for that! You knew there was, right? There’s an app for everything. Search your app store for a medication reminder.

Put a reminder on your calendar to call for refills and/or schedule appointments before the last minute.

Leave sticky notes around the house or in your bathroom and kitchen if you’re more old school!

If forgetting’s a problem…

Keep some medication in your purse (or at the school nurse) to take if forgotten in the morning if this might still be a problem.

Remember to not leave your purse in the car or other places the medicine will get too hot or cold or in a place your children have access to it. We don’t want them sneaking into your purse for mints and getting a medicine instead.

If the school nurse will keep some, be sure to ask for a nurse’s note when getting the prescription.

Remember to schedule your next visit!

 If able, schedule the next visit before you leave the doctor’s office.  Bring your calendar to each visit!

Call as soon as you can to schedule if you don’t have your calendar available at the doctor’s office or you were unable to schedule for any reason.

If you notice no more refills on the bottle when picking up your medicine, call that day to schedule an appointment. The later you wait, the fewer appointment times will be available. Early morning and later in the day fill first!

If you always forget to call when your doctor’s office is open, look for options for them to call you. Leave a message on their office voicemail and be sure to leave the best time frame and number to call when they return your call. Utilize online appointment requests if available.

More reminders

  • Once habits form, it is easier to remember, but until then be sure to set reminders– especially if the medication must be taken at a certain time each day or if missed doses can be dangerous.
  • Learn what to do if you forget a dose by talking with your doctor or pharmacist. Some medicines are fine to skip a dose, others are not so forgiving and must be taken as soon as remembered.


Final Thoughts on ADHD Medicines

My last post was how to start and titrate ADHD medicines. Today I’d like to discuss more of the fine-tuning issues, such as what happens if medicine isn’t taken every day, how to remember it, what to do if parents disagree about medicine, and even how to plan for travel.

Time Off ADHD Medicines

starting ADHD medicinesOnce a good dose is found, parents often ask if medicines need to be taken every day. 

Stimulants work when they work, but they don’t build up in the body or require consistent use. (This is not true for the non-stimulants, which are often not safe to suddenly start and stop.)

Some kids fail to gain weight adequately due to appetite suppression on stimulants, so parents will take drug holidays to allow better eating.

Days off the medicine also seems help to slow down the need for repeated increases in dosing for people who are rapid metabolizers.

Drug holidays off stimulants were once universally recommended to help kids eat better and grow on days off school. Studies ultimately did not show a benefit to this, so it is not necessary. Some kids suffer if they are not on medications. Behavior issues, including safety issues while playing (or driving for older kids) can be a significant problem when not medicated. Self esteem can also suffer when kids are not medicated. 

Despite the fact that some kids need daily medicine, others don’t. When kids can manage their safety and behavior adequately, it isn’t wrong to take days off. Many kids want to gain better weight, and taking a drug holiday can help with appetite.

Talk to your child’s doctor if you plan on not giving your child the medicine daily to be sure that is the right choice for your child.

Remembering the medicine

It’s difficult to get into the habit of giving medicine to a child every day.  Tomorrow’s post will be about how to remember medicines

My favorite tip is to put the pills in a weekly pill sorter at the beginning of each week. This allows you to see if you’re running low before you run out and allows you to see if it was given today or not. These medicines should not be kept where kids who are too young to understand the responsibility of taking the medicine have access.

Controlled substances

Controlled substances, such as stimulants, cannot be called in or faxed to a pharmacy. Many physicians now have the ability to e-prescribe these.

Controlled substance prescriptions cannot have refills, but a prescriber can write for either three 30 day prescriptions or one 90 day prescription when they feel a patient is stable on a dose.

Stimulants are not controlled substances because of increased risks and side effects. Some of the more significant side effects of ADHD medicines are seen in non-stimulant medicines. 

They are controlled substances because they have a street value. Teens often buy them from other teens as study drugs. This can be very dangerous since it isn’t supervised by a physician and the dose might not be safe for the purchaser. It is of course illegal to sell these medicines.

The DEA does monitor these prescriptions more closely than others. If the prescription is over 90 days old, many pharmacists cannot fill it (this will vary by state), so do not attempt to hold prescriptions to use at a later time.


Acids and Stimulants

It has been recommended that you shouldn’t take ascorbic acid or vitamin C (such as with a glass of orange juice) an hour before and after you take medication.

The theory is that ADHD stimulants are strongly alkaline and cannot be absorbed into the bloodstream if these organic acids are present at the same time.

High doses of vitamin C (1000 mg) in pill or juice form, can also accelerate the excretion of amphetamine in the urine and act like an “off” switch on the med.

In reality  have never seen this to be an issue.

If anyone has noticed a difference in onset of action or effectiveness of their medicine if they take it with ascorbic acid or vitamin C, please post your comment below.

When Mom and Dad disagree

It is not uncommon that one parent wants to start a medication for their child, but the other parent does not.

It’s important to agree on a plan, whatever the plan is.

Have a time frame for each step of the plan before a scheduled re-evaluation.

If the plan isn’t working, then change directions.

Be cautious of how you talk about this with your child. If kids know it is a disagreement, they might fear the medicine or think that needing it makes them inferior or bad.

Do not talk about the diagnosis as if it’s something the child can control. They can’t.

Don’t make the child feel guilty for having this disorder. It isn’t fair to the child and it only makes the situation worse.

Having the medicine when you need it

Refills 

There is nothing more frustrating for a parent and child than to realize that there’s a big test tomorrow and you have no medicine left and you’re out of refills.

Technically none of the stimulant medicines can have refills, but a prescription covering 90 days at a time can be given. This can be done with a 90 day prescription or three 30 day prescriptions.

The technicality of this is sometimes difficult. You cannot call your pharmacy to request a refill. You must ask to have the next prescription filled if your physician provided 3 prescriptions for 3 months.

Be sure to know the procedure for refills at your doctor’s office.

Travel

It’s very important to plan ahead prior to travel if your travel involves the timeframe of needing new medication.

You must plan ahead so that if a refill will be needed during the trip you will either be able to fill a prescription you have on vacation or you will need to fill the prescription in advance.

Most people can get a prescription 7 days prior to the 30 day supply running out but not sooner, so you might need to fill a couple prescriptions a few days earlier in the month each to have enough on hand to make it through your vacation. It takes planning!

Sometimes you can work with your physician and pharmacist to get medicines early prior to travel. Talk to your pharmacist to see if they can help arrange this.

If you are out of town and you realize you forgot your child’s non-stimulant, call your doctor to see if they can e-prescribe it. Many of the non-stimulants are not safe to suddenly stop, so they are likely to send in a prescription. Insurance is not likely to pay for these extra pills if it was recently filled.

International travel will require that you find the laws in the other country to find out if you can bring controlled substances into the country. If you will need additional medicine while you are in that country, you will need to find a way to get the medicine.

 

Mail order

Some insurance companies will allow mail order 90 day prescriptions.

There are insurance companies that not only allow, but require them on daily medicines.

Others do not allow it.

In general I advise against a 90 day prescription if the dose is not established or if there are any concerns that it might not be the perfect dose. If there is any concern that it might need to be changed, a 30 day prescription is a better option.

If you will need to do a mail order, be sure you schedule your appointment to get the prescription early enough to account for the lost time mailing.

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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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.


Share Quest for Health

ADHD Medications: Types and side effects

I have spent several days on the diagnosis of learning and behavioral problems and non-medical, dietary and supplemental treatments that can be used for these issues. Today I will focus on the types of prescription medications used primarily for ADHD as well as their side effects. Tomorrow will cover how to get started on a medication for ADHD.

Approved vs not approved medicines

There are many treatments out there that are not approved for the purpose they are used. This sounds scary, but if done properly might be a good consideration.

Physicians sometimes use treatments that have not been approved for the purpose or an age group because they know from general experience that it works or they are at a loss from approved treatments failing and they need to try something else.

One example is using a shorter acting form of guanfacine (Tenex) that has not been approved to treat ADHD, but it has some advantages over the longer acting form (Intuniv) that is approved for ADHD. The short acting form can be broken, allowing slower titration of dose changes. The long acting form cannot be broken.

Another common example is the use of albuterol, a medicine that helps breathing with conditions that cause wheezing. It is not approved for use under 2 years of age, but it is commonly used for younger children with difficulty breathing — and it helps them breathe, which might keep them out of the hospital and off of supplemental oxygen.

I do not think that all non-approved medicines are good or bad. It is a very individual decision of what medicines to use. Discuss with your doctor if a treatment is approved or if they are using something that is not. Although this is relatively common among people who treat children because many drugs have not been tested in children and have been “grandfathered” into use through experiences that show benefit, be sure the provider is not picking something that has no basis or supporting evidence, especially if he or she profits from the treatment.

Be very wary of anyone who promises a cure – if one really existed everyone would use it.

Medications approved to treat ADHD


When a medication is needed to control symptoms of ADHD, the first line medications are the stimulants unless there are contraindications. Non-stimulant medications are not found to be as effective as stimulants in the majority of children, but they do have a place in the treatment plan for some children. They are sometimes used in addition to stimulants for optimal results.

For information on these medicines, see A Guide to ADHD Medications. It reviews how stimulants act on dopamine and norepinephrine and various time release patterns of different medicines.

ADHD medication guide
ADHD Medication Guide

I love the ADHD Medication Guide (different from the similarly named post above) because it lists the medicines approved to treat ADHD in a colorful chart that groups the medicines in an easy-to-read format.

Categories of Medicines used for ADHD:

Stimulants
  • Methylphenidates (Aptensio©. Ritalin©, Focalin©, Concerta©, Daytrana©, Metadate©, Quillivant©)
  • Amphetamines (Adderall©, Vyvanse©, dexedrine)
Non-stimulants
  • Atomoxetine (Strattera©)
  • Guanfacine (Intuniv©)
  • Clonidine (Kapvay©)
  • Others are used off-label (no FDA approval for the purpose of ADHD treatment): Tenex, Catapres patch, antidepressants, and antipsychotics

Side Effects

Parents usually worry about medication side effects. This is a very legitimate concern, but must be balanced with the risks of not treating. Overall the medicines listed above are very well tolerated.

If a child has side effects to one stimulant, they can usually do well on a different class (methylphenidate vs amphetamine). When neither type is tolerated, a trial of a non-stimulant is indicated. If this isn’t tolerated, reconsider the ADHD diagnosis.

I often hear concerns that parents don’t want their kids changing their personalities or becoming “zombies”. If the right medicine is used at the appropriate dose, this is usually not a problem.

Finding that right medicine and right dose might take some trial and error. Work with your prescriber to get to the right one for your child.

Most commonly observed side effects of stimulants:

Decreased appetite

Appetite is often low in the middle of the day and more normal by supper time if kids take a long acting stimulant.

Good nutrition is a priority. Encourage kids to eat the healthy “main course” first and leave the dessert out of the lunchbox. They should have healthy snacks (think of mini-meals) after school when they get hungry.

Short acting meds improve mid day appetite since they wear off around lunch time. The downside is the child needs to take a dose around lunch time at school.

Kids are often very hungry in the evenings when medicines wear off, so encourage healthy foods at that time.

I have seen some kids who have a really hard time off medicine sitting down to eat. These kids actually gain weight better on medicine because they can finish the meal.

Some kids can improve their appetite with an appetite stimulant. I often use cyproheptadine if weight drops too much in a child. It works best if it is not used every day. I will have kids skip their cyproheptadine at least a couple days each week.

Insomnia

Trouble sleeping is common with ADHD — with or without medicines.

If it is due to the stimulant medicine still being active, trouble sleeping may be relieved by taking it earlier in the day.

If the child’s brain is too active in the evenings because the medicine wears off, learning relaxation exercises can help. Check out the Winding Down section of Sleep Tips for more details.

Increased irritability

Moodiness is especially common as the medication wears off in the afternoon or evening and in younger children.

It makes sense if you consider that all day they are able to focus and think before acting and speaking, but then suddenly their brain can’t focus and they act impulsively.

Typically kids learn to adjust to the medicine wearing off as they mature.

Sometimes just giving kids 30 minutes to themselves and offering a healthy snack can help.

Cognitive behavioral therapy can help.

Anxiety

Anxiety does occur with ADHD and might be under-appreciated before the ADHD symptoms are treated.

Symptoms of anxiety are often missed. They can include avoidance, irritability, moodiness, somatic complaints (headache, stomach ache), and more. HeySigmund has a great list of subtle anxiety symptoms.

When kids can focus better, they might focus more on things that bother them, increasing anxiety and making it more apparent.

It is also possible that anxiety is misdiagnosed as ADHD, which is one reason for stimulant medication failure.

If you notice signs of anxiety, talk to your child’s doctor and/or therapist.

Mild stomach aches or headaches

Stomach aches and headaches are occasionally noted with stimulant medications. It is my experience that they are most common with a new medication or a change in dose.

Because these have many causes, it can be hard to determine if they are really from the medicine or another cause.

If they persist with the medicine, changing to another medication might help.

Tics

Tics are related to treated and untreated ADHD.

People with ADHD are more likely to have tics than the general population.

It was once thought that tics were caused by the stimulant medicines, but it is now thought that they happen independent of the medicine, and medicines might even help treat the tics.

Growth

Weight gain can be difficult for some kids on stimulant medications due to the appetite suppression on the medicine.

Studies have shown a decreased final adult height of about 1-2 cm (1/2 – 1 inch). For most people this small height difference is not significant compared to the benefits in self esteem, academics and behavior children gain on stimulants.

 

Rare side effects of stimulants

Hallucinations

I have only seen two children who could not tolerate stimulants due to hallucinations, but it is very scary for the family when it happens.

Unless there is a significant family history of them, I don’t know a way to predict which child is at risk.

These are a contraindication for continuing that medication, but another type of stimulant or medication can be considered.

Heart issues

Cardiac (heart) problems are overall a rare complication of stimulants and often times are not a contraindication to continuing the stimulant medicine.

There is a small increase in blood pressure and heart rate, both of which should be monitored regularly while on treatment and if the treatment is stopped.

A cardiologist should be considered to further evaluate a patient prior to starting a stimulant if there is any of the following:

  • Shortness of breath with exercise not due to a known non-cardiac cause, such as asthma
  • Poor exercise tolerance compared to children of the same age and conditioning
  • Excessively rapid heart rate, dizziness, or fainting with exercise
  • Family history of sudden cardiac death or unexplained death (such as SIDS)
  • Family or personal history of prolonged QT syndrome, heart arrythmias, cardiomyopathy, pulmonary hypertension, implantable defibrillator or pacemaker

side effects for the non-stimulants:

Atomoxetine

Atomoxetine can cause initial gastroesophageal complaints (abdominal pain, decreased appetite), especially if the dose is started too high or if it is increased too rapidly.

It can also cause tiredness and fatigue when it is first started or if the dose is increased too quickly.

It can increase the blood pressure and heart rate, both of which should be monitored regularly during treatment with atomoxetine.

There is an increased incidence in suicidal thoughts, though uncommon, so children should be monitored for mood issues on this medication.

A rare complication of atomoxetine is hepatitis (inflammation of the liver with yellow jaundice and abnormal liver function labs). The hepatitis resolves with stopping the atomoxetine.

Guanfacine and clonidine

Guanfacine and clonidine both cause fatigue and tiredness, especially when first starting the medication or with increases in dose.

Both of these medications can lower the blood pressure and heart rate, and these should be monitored closely while on guanfacine or clonidine, especially when first starting and increasing dose.

Handouts for medicines

I absolutely love the handouts that Dr. Nerissa Bauer has made for ADHD medications. Click on the image’s caption to go to her website’s page for that handout. The two stimulant classes are first, followed by the non-stimulants.

amphetamine adderall vyvanse
Amphetamines

Amphetamines (Adderall, Adderall XR, Vyvanse, amphetamine mixed salts, Dexidrine, Zenzedi)

 

 

 

ritalin concerta apetnsio metadate
Methylphenidate

Methylphenidate (ritalin, Aptensio XR, Concerta, Metadate CD or ER, Focalin, Daytrana)

 

 

 

strattera, atomoxetine
Atomoxetine

Atomoxetine (Strattera)

 

 

 

clonidine
Clonidine

Clonidine (Catapres, Kapvay)

 

 

 

guanfacine intuniv tenex
Guanfacine

Guanfacine (Intuniv, tenex)

 

 

 

Next up:

Tomorrow’s blog will be about how to choose a medicine to start and how to titrate it to find the best dose.

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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Pill Swallowing Tips

One of the biggest challenges for some people (not just kids) is swallowing pills. At some point transitioning to pills is important. Some medicines don’t come in liquid or chewable form – and if they do, they might taste awful. Some kids simply get so big that the volume of liquid they need to choke down becomes difficult.

Kids often don’t like the taste of medicine.

pill swallowing, medicinesWhen my son was a preschooler, I realized that he swallowed some things whole ~ usually things he didn’t like, like a piece of meat. He sometimes needed oral steroids for wheezing. Steroids in liquid form are notoriously nasty. He would vomit it back up most of the time. The tablets are really small, so I decided to have him try those once. Easy as pie for him! I don’t think we even had to practice. I just told him to not chew because it would taste bad and he knew what to do. I think he was so young, he didn’t know that he should be scared of choking.

If only most people could teach themselves …

Despite it being difficult to learn, most people can learn to safely swallow pills. Once the technique is learned, the size and the shape of the pill isn’t usually an issue.

Don’t wait until they have an illness to start because no one wants to learn anything new when sick. Once they get the technique, be sure to do it often enough that they don’t forget until they need to use it.

There are many tricks people use to swallow pills.
http://www.letstalkkidshealth.org/2018/02/25/learning-to-swallow-a-pill-tips-for-your-child-to-become-a-pro/
Dr. Nerissa Bauer made this easy-to-read handout to help learn to swallow pills.

What works for one doesn’t work for another.

If your child isn’t willing to give it a try, it’s really not worth it. Since this is a mind over matter thing, it will be impossible if they’re not on board. If they’re not ready, every once in a while you can mention how big of a bite of food they just ate and comment that they swallowed it easily. Remind them to let you know when they want to try to swallow a small piece of candy. (For many the temptation of extra candy is an automatic selling point.)

When I had to teach my daughter to swallow pills, I bought a container of Tic Tacs and told her that when she could swallow 3 in a row without choking, she could have the rest and eat them without permission unless she already brushed her teeth at night. She loved that idea and took to the challenge excitedly! She swallowed the first three without a problem. Again, it’s not always that easy.

Teach medication safety and proper use along the way.

Never practice with real medicine, even if it’s over the counter stuff. Kids should know that they’re practicing without real medicine.

At the same time as teaching them to swallow pills you can talk about medication safety: only take it when an adult says it’s okay, keep it away from other children, never share medicine with others, take it as the doctor prescribed if it is a prescription, and how and when to use over the counter medicines.

When you’re giving medicine, talk about what it is and what it’s for. I’m often surprised at college aged teens not knowing what common medicines are used for if they have aches and pains or illness. They need to know!

Start small and work up.
pill swallowing
Practice with cake decorating pieces or small candies.

For kids who are very hesitant, it’s possible to start very small and work up to a standard pill size.

Start with cake decorating beads, balls or sprinkles. Avoid the ones that are very lightweight because they might float and not go down as easily. Most kids agree that something very small will be easy to swallow. Have them show you they can. Build confidence by starting really small so they have a good first try.

After they do it enough that they feel confident moving up (usually 3-5 successful swallows), use a bigger piece.

Keep working your way up to a size that resembles most medicines, such as a tic tac.

If a child fails a size, go back down to the smaller size to gain confidence.

Don’t spend more than 10-15 minutes each session. If the child tires or the stomach fills with too much water, it will be non-productive.

Remember to praise any successes.

Always end on a positive note by having the child swallow whatever size he can. So if it’s unsuccessful to move to a larger size, have him go down a size, swallow successfully, then don’t go up again at that session.

You can always try again another day.

Straw Method.

Different people like different positions for swallowing pills.

Some do best with their head back, as is typical with drinking from a cup, so the pill has a straight shot down.

Others do best with the head turned to one side or another.

Some even change their preference over time.

For those who prefer to have the head neutral or a bit forward, using a straw avoids having to tilt back to drink.

Have your child put the candy on the front half of the tongue, then drink out of a straw with the straw at the front of the tongue so the liquid comes out in front of the pill. Some people say to put the tablet as far back as possible, but I think that can trigger the choking reaction, which is not helpful at all.

Tell them to focus on the drink, not the tablet.

Most of the time the pill will naturally go down with the liquid without even thinking about it.

If you like to be green and don’t want to fill a landfill with plastic straws, check out these fantastic glass straws. (I don’t typically endorse products, but this is an entirely unpaid endorsement. We’ve had these straws for years. They go in the dishwasher daily. We’ve dropped them from table height. They still look brand new. We love them for many reasons, and since we use straws all the time, I don’t feel guilty about our environment.)

Hidden pills.

Some people feel more comfortable swallowing food than pills, so putting a pill in a soft food helps. Common foods are yogurt and applesauce. I’ve even heard of parents putting the pill at the top of a yogurt tube, and having the child suck down the yogurt.

The biggest issue with this method is that if a child takes too long to take it, the tablet or capsule might start to break down, and then the child can notice the taste (which is often bitter).

Remind the child to not chew the food first because most medicines meant to be swallowed should not be chewed. Best case scenario, is just the bitter taste, but it could disrupt the absorption and benefit of the medicine if it’s chewed.

Research proven techniques

For more help on learning to swallow pills, check out these videos that show how to swallow pills in different positions. Kids might like to see the techniques themselves before they practice.

 

 

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Affording Medications

Another family called this week to ask if I could change their daughter’s asthma prescription to something cheaper. After looking into their insurance plan’s formulary, there really wasn’t anything cheaper. Every inhaled corticosteroid (which is the first-line medicine recommended to prevent asthma attacks) was expensive – even the generics. This family has to either find a less expensive way to purchase the prescription, choose to leave their child undermedicated, or pay over $300 per month for an asthma preventative medicine. Of course if they don’t give this medicine they risk ending up in the ER in the middle of the night. ER’s are expensive and if it’s a needed trip, it means their child is suffering.

Insurance companies make it hard.

On one hand insurance companies want patients to take the medicine appropriately to decrease long term costs of disease management. They even remind doctors to consider certain medicines if a patient has certain diagnoses and prescriptions haven’t been filled or if follow up appointments haven’t occurred.

On the other hand, they’re pricing many medicines out of reach for many families.

Transparency is a goal for healthcare, but it isn’t there, as Dr. Melissa Welby explains.

What can you do?

Check your formulary

When shopping for new insurance look at the formulary if anyone in your family is on a chronic medication. You will have to talk to an insurance company representative since formularies aren’t publicly displayed anywhere and they’re specific to your plan. This isn’t foolproof because formularies change on a regular basis, but at least learn what they currently have and what your costs would be.

Before doctor visits where you know you’ll be getting refills, check your formulary to see if it has any changes. You can usually log into your insurance company’s website to see your plan’s information.

See if you qualify for Patient Assistance Programs.

These are programs run by drug companies and other organizations that give free medicine to people who can’t afford to pay for them.

You can learn more about these on NeedyMeds, Partnership for Prescription Assistance and RxAssist.

You can also do an online search for “patient assistance program” along with the medicine name.

Shop around.

Look at GoodRx and WeRx to search local pharmacy cash pricing with their coupons. This doesn’t give the cost that your insurance will allow, but you can see how much it would cost with cash and compare to insurance cost. Sometimes it’s cheaper to not use insurance but see if the coupon will work with your insurance and compare costs.

Look at your insurance plan to see which pharmacy they prefer. I’ve had issues with this myself and I’m not sure if this is always helpful.

Get a Drug Discount Card or Coupon.

These can be used by anyone regardless of income or insurance plan. See MoneyCrashers for a nice summary on how discount cards work and when to use them.

You often can’t use insurance when you use the discount card, so you have to look at your deductible and calculate if it’s better to pay more until you meet your deductible and then get things inexpensively/free or if saving the money but not contributing to your deductible is better.

These cards can be used to help buy over the counter medicines (with a prescription) as well as prescription medicines. I think you can even get cards for your pet prescriptions.

To find drug discount cards, look at NeedyMeds, RxAssist, GoodRx, WeRx or the drug company’s website. I find it easiest to search the drug name and coupon together when looking for discounts.

I have a love-hate relationship with discount cards.

If people can’t otherwise afford a prescription (name brand or generic) then a coupon might help them purchase a needed medicine, but we all pay in the end.

Coupons are offered by manufacturers because they increase the sales of brand-name drugs by 60% or more by reducing generic sales. These programs increase drug spending by $30 million to $120 million per drug (and this study is several years old- coupons are increasingly being used so this might underestimate current spending).

Coupons can help people afford medicines, at least temporarily, but they increase insurance costs overall. If you use your insurance plan with the coupon, your insurance company pays more than they would if you purchased a generic, and they pass that cost on to consumers.

The money you spend doesn’t apply to your deductible if you don’t use insurance – and insurance companies then get off without having to pay for your medicines despite the fact that you pay them monthly to help cover your healthcare. I guess the good news is that if you don’t use insurance it doesn’t increase next year’s premium… but they might see you as “high risk” if you don’t fill recommended prescriptions, so that still might affect costs in the end.

Talk to your doctor.

Of course, it all starts with the prescription itself.

When your doctor is writing the prescription, openly discuss cost concerns, such as name brand vs generic substitutions in the same class of medications that might be available.

We cannot know your specific formulary, but we can try to help you find the cheapest option. Electronic Health Records sometimes link to insurance formulary information to give an idea of which tier a medication is on. I find this works some of the time. Sometimes it isn’t accurate. People still get to the pharmacy and suffer from sticker shock when they’re told the cost. This is why I think it’s so very helpful if you find your formulary before even going to your appointment. It can save a lot of back and forth at the pharmacy if we have the costs at the appointment.

If you get to the pharmacy and cannot afford the medicine, be sure to let your doctor know! We want to help but we can’t if we don’t know the issues.



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Cough Medicines: Which One’s Best?

I get a lot of requests for an over the counter cough suppressant suggestion or a prescription cough medicine for kids so they can sleep. Despite my attempts at educating the family about why I don’t recommend any cough medicines, many parents are upset leaving without a medicine.

I have collected numerous articles that show why I treat cough the way I do. Links are included throughout this blog. Click away to learn more!

First, a little background

Most cough medicines were studied in adults and the dosing for kids was calculated from the adult dosage.

Kids are not small adults. Their bodies handle illness and metabolize drugs differently.

But few studies have been done to show if medicines work at all, and if they do, what the best dose is for kids of various ages and sizes.

In 2008 the FDA stated that toddlers and babies should not use cold and cough medicines.

Drug makers voluntarily changed the labeling of over the counter (OTC) cough and cold products, recommending them only for children aged 4 and older. The American Academy of Pediatrics says there is no reason that parents should use them in children under age 6 because of the risks without benefit.

Despite this, studies show that 60% of parents of children under 2 years have given a cough and cold medicine. Why? In my opinion, they are desperate to help their child and don’t think it is enough risk to not at least try.

Of course I would never recommend giving a child a spoonful of pills.

I know it’s frustrating when your child is up all night coughing. It’s frustrating when my kids and I are up all night coughing.

do you know what we do in my house?

  • Humidify the air of the bedroom (during the dry months)
  • Extra water to drink all day
  • Honey before bedtime in an herbal tea (No honey before 1 year of age!)
  • Encourage cough during the day to help clear the airways
  • Nasal rinse with saline (I love this, but my family is not so keen on it)
  • Sleep with water next to the bed to sip on all night long
  • Back rubs, hugs, kisses, & reminders that it will get better
  • Nap during the day as needed to catch up on lost sleep
  • Watch for signs of wheezing or distress

That’s about it for the cough.

If something hurts, we use a pain reliever like ibuprofen or acetaminophen. We use those only if something hurts, not just because and not for fever without discomfort.

Why don’t I give my family cough medicines?

Because they don’t work.

The OTC options:

Cochrane Review in 2007 was done to look at over the counter cough medicine effectiveness in both children and adults. These reviews look at many studies and analyze the data. Unfortunately there are very few studies, and many were of poor quality because they relied on patient report. In studies that included children, they found:

  • Antitussives were no more effective than placebo for kids. (one study) In adults codeine was no more effective than placebo. Two studies showed a benefit to dextromethorphan, but another study did not, so mixed results.
  • Expectorants had NO studies done in children. In adults guaifenesin compared to placebo did not show a statistically different response. 
  • Mucolytics more effective than placebo from day 4-10 in kids. (one study) In adults cough frequency was decreased on days 4 and 8 of the cough. (Note: I am not sure what OTC mucolytic was studied. I am only aware of pulmozyme and mucomyst, both used by prescription in children with cystic fibrosis.)
  • Antihistamine-decongestant combinations offered no benefit over placebo. (2 studies) One of two studies showed benefit in adults. The other did not.
  • Antihistamine shows no benefit over placebo. (one study) In adults antihistamines did not help either.

Another Cochrane Review in 2012 once again failed to show any real benefits of cough medicines, especially given the risks of side effects.

What about some specific studies on OTC medicines?

I cannot report them all here, but here’s a few:

study comparing dextromethorphan (the DM in many cough medicines), diphenhydramine (AKA Benadryl), and placebo in 2004 showed no difference in effectiveness of controlling cough for sleep. That means the placebo worked just as well as the medicines. Insomnia was more common in those who got dextromethorphan.

Does guaifenesin help? It is thought to thin mucus to help clear the airways. It does not stop the cough. Studies vary in effectiveness and are typically done in adults, but it may be helpful in children over 4 years of age. Do not use combination cough medicines though, for all the reasons above.

In 2007 honey was shown to be a more effective treatment than dextromethorphan or no treatment. Another study in 2012 showed benefit with 2 tsp of honey 30 minutes before bedtime. A side effect of honey? Cavities… Be sure to brush teeth after the honey!

What side effects and other problems are there from over the counter cough medicines?

As stated above, the dosages for children were extrapolated from studies in adults. Children metabolize differently, so the appropriate dosage is not known for children. Taking too much cold medicine can produce dangerous side effects, including shallow breathing and death.

Many cough medicines have more than one active ingredient. This can increase the risk of overdosing. It also contributes to excess medicines given for problems that are not present. For instance if there is a pain reliever plus cough suppressant, your child gets both medicines even if he only has pain or a cough. Always choose medicines with one active ingredient.

Accidentally giving a child a too much medicine can be easy to do. Parents might use two different brands of medicine at the same time, not realizing they contain the same ingredients. Or they can measure incorrectly with a spoon or due to a darkened room. Or one parent forgets to say when the medicine was given and the other parent gives another dose too soon.

And then there’s non-accidental overdose. There is significant abuse potential: One in 20 teens has used over the counter cough medicines to get high. Another great reason to keep them out of the house!

Side effects of cough medicines include:
  • Nausea and vomiting
  • Stomach pain
  • Confusion
  • Dizziness
  • Double or blurred vision
  • Slurred speech
  • Shallow breathing
  • Impaired physical coordination
  • Rapid heart beat
  • Drowsiness
  • Numbness of fingers and toes
  • Disorientation
  • Death, especially in children under 2 years of age and those with too high of a dose

What about prescription cough suppressants?

In 1993 a study comparing dextromethorphan or codeine to placebo showed that neither was better than the placebo. Codeine belongs to a class of medications called opiate analgesics and to a class of medications called antitussives. When codeine is used to reduce coughing, it works by decreasing the activity in the part of the brain that causes coughing. It can make breathing too shallow in children. Codeine has several serious side effects which could be life threatening in children. Combination products with codeine and promethazine (AKA phenergan with codeine) should never be used in children.

The FDA has recommended against the use of cough medicines with codeine or hydrocodone for children for years, but just this month strengthened its position. New labels will now state that they aren’t for use in children under 18 years of age. The label will also warn about misuse adults and list the serious side effects and risks of these opioids.

In my opinion, why use it in older children and adults since it hasn’t been shown to work and we know there are risks?

What about antibiotics for the cough?

I’ve enjoyed following Dr. Christina Johns on Twitter for a lot of great advice like this!

Antibiotics may be used to treat bacterial causes of cough (such as some pneumonia or sinusitis) but antibiotics have no effect on viruses, which cause most coughs.

If your child has a cold, antibiotics won’t help.

Antibiotics won’t make the cough go away faster unless there is bacterial pneumonia.

They won’t prevent the cough from getting worse.

They carry risks.

In summary: over the counter and prescription cough suppressants and antibiotics shouldn’t be used for most coughs.

Body focused repetitive disorder treatments

I see several kids each year who pull hair from their scalp, eyelids, or eyelashes. This is called trichotillomania (sometimes shortened to trich). Treatment has historically been cognitive behavioral therapy, but I’ve seen good results with a supplement called n-acetylcysteine.

disclaimer

Because I see families struggle with this and other similar issues, I’m breaking my general rule of blogging within the realm of standard guidelines and am going outside of conventional medical advice to talk about an interesting new treatment that is showing positive benefit with studies. I say this only to caution the reader that you should discuss this with your child’s doctor about it and to remind you not to take this (or anything else I write) as medical advice.

 

Body Focused Repetitive Disorders

hair pulling, nail biting, skin picking, FBRD

Trichotillomania is more common in children who have anxiety, and it can also lead to more anxiety from the social isolation and bullying that result from hair loss. It’s a vicious circle where the self-inflicted hair loss is in itself distressing, but that distress leads to more pulling. Cutting hair short isn’t an effective treatment.

Skin picking and nail biting are similar body focused repetitive behaviors (BFRB).

Do dietary changes help?

There have been conflicting studies that suggest avoiding certain foods can help prevent the urges to pull hair. Some people report that avoiding sugar and caffeine helps. Since added sugar and caffeine are not parts of a healthy diet, I think whether or not it helps, avoiding added sugar and caffeine is a good idea for all kids.

What help is available?

The first treatment recommended for trich (as well as other body focused repetitive behaviors [BFRB]) is therapy. Treating BFRB should involve cognitive behavioral therapy or habit reversal therapy from a trained therapist with experience in this issue. During therapy they will learn to identify emotions, label them, and appropriately address them. In habit reversal therapy they learn to do another action instead of the hair pulling (or nail biting/skin picking). This might mean clenching fists, playing with play doh, or another activity.
Family support can help ease the anxieties that are caused by the behavior itself and it is important that family members praise the positive steps along the journey. There are support groups available in many areas.

Are there supplements that help?

A relatively new development in the treatment of trichotillomania and other BFRBs is a supplement called N-acetylcysteine (NAC), a glutamate modulator. NAC is available over the counter in stores that sell supplements and online for a relatively low cost. How NAC might work is not completely understood and well beyond the scope of this blog, but is reviewed in the Journal of Psychiatry and Neuroscience.

I’ve been recommending NAC for awhile now for trichotillomania (as well as nail biting and OCD) and have had mixed response, but overall positive. For those who did not find it helpful, I suspect they did not use it long enough since it can take over a month to see benefit. I think parents like the fact that it is a supplement, which is easier to provide than behavioral therapy, but therapy is still an important part of the treatment. Those who have the best results do therapy along with the supplement.

How long does it take to see results with NAC?

It takes about a month or two (studies show 4-9 weeks) of NAC to show benefit. Taking a supplement for that length of time without benefit can be difficult and might cause some to quit prematurely, but I’d recommend at least two months before deciding it doesn’t work. Talk with your child’s doctor before starting any supplement and before stopping it.

How much NAC do you give?

Most studies have been done in adults, so the best pediatric dose is not known. For adults and children over about 45 pounds, 600 – 2400 mg has been studied, but no ideal dose is known. It has been suggested about 60mg/kg/day for younger children, but there is no standard dose.

It may also be difficult to give to a child who cannot swallow the capsules. While in theory the capsule could be opened (and the powder is available in bulk), the taste and smell is of rotten eggs, so I cannot imagine a child taking it mixed in food or drink. Tips on teaching kids to swallow pills is covered here.

Talk with your child’s pediatrician before beginning any supplement, even though they are sold over the counter. This helps your child’s doctor know more about what is going on, what works and what doesn’t for your child, and to help monitor for possible reactions if they are known (especially if your child is on prescription medicines).

One dosing strategy for children over 45 pounds is to give a 600 mg capsule twice per day (1200 mg) for a week and increasing to 2 capsules twice per day (2400 mg) after 4 weeks if needed. I have also seen titration methods, beginning with one capsule daily for the first week (600mg), then one capsule twice a day for the 2nd week (1200mg), then 3 capsules divided in 2 unequal doses (1800 mg) for the 3rd week and 4 capsules divided in 2 doses (2 capsules twice per day = 2400 mg) thereafter.

Is NAC safe with other medicines?

NAC might interact with other medicines, so it is recommended to discuss interactions with your doctor and pharmacist.

Since antidepressants are often used in anxiety disorders such as trichotillomania, I have tried to see what interactions might be known. Research has shown that rats need lower doses of imipramine (a tricyclic antidepressant I don’t use in kids) and escitalopram (Lexapro, an SSRI antidepressant) when taking NAC, but NAC doesn’t affect the dose of desipramine (another tricyclic antidepressant) and bupropion (Wellbutrin). In contrast, NAC in the rats actually made fluoxetine (prozac) less effective, so higher doses were needed. Obviously people are not rats, and this is an area that needs to be further studied, but if your child is on any prescription medicines, be sure your doctor and pharmacist know that he is starting NAC.

If anyone knows of human studies or more information, please post in the comments below!

How long will NAC be needed?

It is thought that NAC is safe long term and might be needed long term since the underlying anxiety does not go away, only the symptoms are controlled with the NAC. This is an important reason to do the therapy too, since learning techniques to identify and appropriately deal with stressors can help life long without side effects.

When NAC is stopped, symptoms might return. I will often suggest a trial off NAC once all habits being treated have been gone for at least a month.

Weaning to a lesser dose for a few weeks is one way to test without going completely off, and I find many families feel more comfortable with a wean versus sudden stopping.

If symptoms resume, restart the NAC. (Note: This is my own version of what to do — I have not found guidance in the studies I’ve read. If anyone knows anything more specific, please comment below so we can all learn!) I did see one case report of a person treated for 6 months with NAC and the symptoms did not return for a full month after stopping NAC.

Is NAC safe?

Side effects are rare, but may include gastrointestinal upset, diarrhea, nausea, rash, vomiting and fatigue.

One study of AIDS patients used 8000 mg of NAC per day, showing overall safety at high doses. This is NOT the dose recommended for hair pulling, skin picking, and most psychiatric and neurologic disorders.

Some studies suggest kidney stones are more common at higher doses, but taking high doses of Vitamin C at the same time as each NAC dose can help prevent kidney stones from forming.

A supplement of Vitamin B6 has also been recommended by some because NAC increases the body’s use of Vitamin B6, but most children can get plenty of this vitamin from a healthy diet. Many foods are rich in B6, including fish, beef, poultry, fruits (not citrus fruits), vegetables, and grains. Vitamin B6 is also in most multivitamins, so if you choose to supplement, a standard multivitamin would be considered safe.

Talk with your child’s doctor if you plan on doing mega doses of vitamins, as that can sometimes be harmful.

What else is NAC used for?

When I was a pediatric resident, we used NAC for acetaminophen (Tylenol) overdoses. I hadn’t thought of it for many years, then a few years ago I started to hear of it being used for other things.

Research for using NAC for a variety of psychiatric and neurologic disorders in addition to trichotillomania is promising. There is evidence that NAC works for some symptoms involved with autism, Alzheimer’s disease, cocaine and cannabis (marijuana) addiction, bipolar disorder, depression, nail biting, skin picking, obsessive-compulsive disorder, schizophrenia, drug-induced neuropathy and progressive myoclonic epilepsy.

Disorders such as anxiety, attention deficit hyperactivity disorder and mild traumatic brain injury also have preliminary studies supporting NAC use but require larger confirmatory studies.

Suggested NAC

I do not typically recommend one brand over another, but supplements present a problem due to the lack of regulation. Investigations have shown that there is variability of what is actually in the product from bottle to bottle.

For kids who can swallow pills, I recommend Swanson Vitamins. During the study on BFRB’s done by Jon Grant, MD, JD, MPH, Swanson products were used because they were the only company in the US that would provide a certificate of purity and batch to batch sameness. For this reason I recommend Swanson’s for NAC as well as their other products if you will be taking a supplement.

For kids who can’t swallow pills, there is an effervescent tablet that I’ve heard works well. PharmaNac has 900 mg per tablet, and their website recommends 2-4 tablets per day. Note: Their website mentions a potential issue with some antibiotics and NAC, but those claims have been disputed. It would not be wrong to separate dosing of antibiotic and NAC, but it might not be an issue.

For More Information:

For more information, see Experts Consensus Treatment Guidelines for Trichotillomania and Skin Picking and the many other resources found on The TLC Foundation for Body-Focused Repetitive Behaviors.

KidsHealth has a Trichotillomania page for teens.

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Tamiflu: The not-so-great influenza treatment

Over the years I’ve written a lot about Tamiflu because I have strong feelings about its use. Here I’ll summarize what I’ve learned over the years because during flu season I get many requests for Tamiflu (oseltamivir). Understandably parents fear the flu once they see how miserable their kids are when it hits their house, but I don’t like to use Tamiflu because I just don’t think it works well and it has quite a few side effects.

In recent years I’ve felt coerced into writing more prescriptions for Tamiflu due to the powers of the guidelines recommending it. It’s more common in my experience to hear negative feedback about side effects than it is to see patients get better faster. (Note: this is a very biased view, since those who are better would not call, but since so many call with side effects it seems fair to say I don’t like the drug.)

I am not alone in my dislike of Tamiflu. I follow a listserv of pediatricians around the country and many share my views. In a discussion of influenza and antivirals, one doctor suggested watching a TED Talk by Dr. Ben Goldacre: What doctor’s don’t know about the drugs they prescribe.  Dr. Goldacre starts talking about Tamiflu specifically about 10:10, but the entire lecture is done in an entertaining and informative manner if you have the time.

I feel deceived. When I practice medicine, I follow standard recommendations and guidelines that are based on peer reviewed articles and data. The question is, what important data is left out? There is a movement to solve this problem of unpublished studies. You can see updates at the Tamiflu Campaign of the British Medical Journal.

The WHO has downgraded Tamiflu’s status, but I haven’t seen the CDC or AAP comment on that.

Back to influenza treatment…

First, current influenza treatment guidelines regarding the use of antivirals:

From the CDC’s recommendations for antiviral use for influenza

Summary of Influenza Antiviral Treatment Recommendations

  • Clinical trials and observational data show that early antiviral treatment can shorten the duration of fever and illness symptoms, and may reduce the risk of complications from influenza (e.g., otitis media in young children, pneumonia, and respiratory failure).
    • Early treatment of hospitalized adult influenza patients has been reported to reduce death.
    • In hospitalized children, early antiviral treatment has been reported to shorten the duration of hospitalization.
    • Clinical benefit is greatest when antiviral treatment is administered early, especially within 48 hours of influenza illness onset.
  • Antiviral treatment is recommended as early as possible for any patient with confirmed or suspected influenza who:
    • is hospitalized;
    • has severe, complicated, or progressive illness; or
    • is at higher risk for influenza complications.
  • Antiviral treatment also can be considered for any previously healthy, symptomatic outpatient not at high risk with confirmed or suspected influenza on the basis of clinical judgment, if treatment can be initiated within 48 hours of illness onset.

That last statement is what really gets me confused. I know that influenza can be deadly. I know we should try to do everything in our power to help prevent severe illness and death. But to treat any healthy person with suspected flu with a medicine that hasn’t been shown to be very effective and has side effects seems unreasonable to me. But because it’s a guideline, if a physician chooses not to give antiviral treatment and there is a bad outcome, they could be held liable. Despite the research. I think this option also encourages people to not get the vaccine because they think they can just treat it if they get the disease. It’s not that easy…

look at what a search for “unpublished tamiflu trials” shows.

For those of you unfamiliar with the Cochrane group: They are a well respected group that reviews all the studies within certain parameters on one topic to evaluate the overall findings of several independent studies.

From the Cochrane Group: A review of unpublished regulatory information from trials of neuraminidase inhibitors (Tamiflu – oseltamivir and Relenza – zanamivir) for influenza. These results are from a review of published and unpublished studies that they could find. From the abstract: “The authors have been unable to obtain the full set of clinical study reports or obtain verification of data from the manufacturer of oseltamivir (Roche) despite five requests between June 2010 and February 2011. No substantial comments were made by Roche on the protocol of our Cochrane Review which has been publicly available since December 2010.”

They found several problems with Tamiflu from the studies they were able to review:

  • Drug manufacturers sponsored the trials, leading to publication and reporting biases. One of the authors reported that 60% of the data was never published. This is over half of the research, and I suspect it didn’t support use of the medicine (remember the company that benefits from selling the medicine was doing the trials…)
  • There was no decrease in hospitalization rate for influenza in people treated with Tamiflu.
  • There was not enough evidence of prevention of complications from influenza. Design of the trials (again by the people who make the drug) did not report the prevention of complications from influenza, such as secondary infections.
  • There is not evidence in the trials to support that Tamiflu reduces spread of the virus. One of the main reasons people request the medication is after exposure to prevent illness! (Note: this might have changed because the indications on the package insert now say it can be used to prevent illness in those over 1 year of age and they were previously not allowed to mention prophylaxis.)
  • Tamiflu reduced symptoms by 21 hours. Yep. Less than one day of fewer symptoms. For the cost of the drug and the potential side effects, is feeling sick for 1 day less really worth it?
  • There was a decreased rate of being diagnosed with influenza in those randomized to get Tamiflu, probably due to an altered antibody response. The authors suspect a body becomes less able to make its own antibodies against influenza when taking Tamiflu.
  • Side effects were not well documented. A review study done in children exclusively (Neuraminidase inhibitors for treatment and prophylaxis of influenza in children: systematic review and meta-analysis of randomised controlled trials) focused on treatment of disease and prevention of illness after exposure. Findings included:
  1. Symptom duration decreased between 0.5 and 1.5 days, but only significantly reduced symptoms in 2 of 4 trials. That means in 2 of 4 trials there was no significant reduction in symptoms.
  2. Prophylaxis after exposure decreased incidence by 8% of symptomatic influenza. This means for every 13 people given Tamiflu to prevent disease, one case will be prevented. Not great odds.
  3. Treatment was not associated with an overall decrease in antibiotic use, suggesting it did not alter the complication of bacterial secondary infections.
  4. Tamiflu was associated with in increased risk of vomiting. About 1 in 20 children treated with Tamiflu had an increased risk of vomiting over the baseline vomiting due to influenza.
  5. There was little effect on the number of asthma exacerbations or ear infections by treating influenza with Tamiflu.
Investigators have documented their discussions with the maker of Tamiflu on Tamiflu correspondence with Roche.

 

Recent studies have tried to compile all that is known about how oseltamivir works:

Results from this study include:

  • In the treatment of adults, oseltamivir reduced the time to first alleviation of symptoms by 16.7 hours, 29 hours in children.
  • There was no difference in rates of admission to hospital between treatment groups in both adults and children.
  • Oseltamivir relieves symptoms in otherwise healthy children but has no effect on children with asthma who have influenza-like illness.
  • Oseltamivir had no significant effect on admissions to the hospital.
  • Oseltamivir causes gastrointestinal disturbances in both prophylaxis and treatment roles. In prophylaxis, it caused headaches, renal events (especially decreased creatinine clearance), and psychiatric effects.

So what do I recommend during the cold and flu season?

    1. Get vaccinated! The influenza vaccines have been shown to help prevent influenza and are very well tolerated with few side effects. If you or your children are due for other vaccines, be sure to get caught up. Even if they aren’t a perfect match, some protection is better than none, and if more people get the vaccine herd immunity helps!
    2. If you get sick, stay home until you’re fever free without the use of a fever reducer for at least 24 hours! Don’t spread the illness to others by going to work or school. The influenza virus is spread for several days, starting the day before your symptoms start until 5-7 days after symptoms start– kids may be contagious for even longer. You are most contagious the days you have a fever.
    3. Wash hands well and frequently. If you can’t use soap and water, use hand sanitizer.
    4. Cover your cough and sneeze with your elbow or a tissue.
    5. Avoid close contact with people who are sick. But remember that people spread the virus before they feel the first symptoms, so anyone is a potential culprit!
    6. Don’t share food, drinks, or towels (such as after brushing teeth to wipe your mouth) with others.
    7. Don’t touch your eyes, nose, and mouth — these are the portals for germs to get into your body.
    8. Keep infants away from large crowds during the sick season.
    9. Frequently clean objects that get a lot of touches, such as keyboards, phones, doorknobs, refrigerator handle, etc.
    10. Avoid smoke. It irritates the airway and makes it easier to get sick.
    11. Remember that many germs make us sick during the flu season. Just because you’ve been sick once doesn’t mean you won’t catch the next bug that comes around. Use precautions all year long!
    12. Did I mention that you should get vaccinated?

Because the guidelines recommend Tamiflu as above, I will probably be forced to prescribe it by worried parents who hope that their kids will feel better. (You’ve heard of defensive medicine, right?)

Influenza is a miserable illness. The key is prevention. I’ve had my vaccine, how about you? If you’re worried about the injection, check out Vaccines Don’t Have to Hurt As Much as Some Fear.

A physician’s story of his sister dying of influenza despite being overall healthy and getting good medical care: Even With All Our Modern Medicine, I Watched My Sister Die From Flu

Added 1/14/18: I just saw this story about a girl with very scary hallucinations from Tamiflu. I’ve heard these stories before. It’s not as uncommon as the story might lead you to believe.

Further Reading:

Neuraminidase inhibitors for preventing and treating influenza in healthy adults and children: A link is available to the full text of the study by T Jefferson, MA Jones, P Doshi, CB Del Mar, CJ Heneghan, R Hama, and MJ Thompson.

New Allergy Guidelines for People Over 12 Years Old

If you or your kids suffer from allergies, I’m sure you want to know how to best manage them. In addition to limiting exposure, medications can be a big benefit.

 

The American Academy of Allergy, Asthma, and Immunology and the American College of Allergy, Asthma, and Immunology (AAAAI and ACAAI) have published new guidelines in the Annals of Internal Medicine for the initial medical treatment of seasonal allergies in people 12 years and older.

The recommendations essentially state:

  • Use steroid nasal sprays first without an oral or nasal antihistamine. Many intranasal steroids are available over the counter without a prescription. A great list is included on the AAAAI website. (Be careful to not to confuse them with the nasal antihistamines, which are in the same chart but identified in the column titled “Class”.)
  • In those over 15 years, the nasal steroid is preferred over a leukotriene receptor antagonist (ie Singulair or montelukast). For those with asthma, the leukotriene receptor antagonist might offer an additional benefit for asthma, but it is not the preferred treatment in either allergies or asthma. (I think the age change is simply due to the ages studied but it was not specified.)
  • In moderate to severe allergic conditions, a combination of nasal steroid and nasal antihistamine can be considered.

These recommendations are based on a review of many studies to show what treatments worked and what didn’t. They also took into consideration the fact that oral antihistamines can cause sedation and the nasal antihistamines do not. In general the nasal steroids worked better than other treatments. They did note that for people who do not tolerate nasal sprays, alternates would be oral antihistamines or leukotriene receptor agonists.