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.


Share Quest for Health

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.

 

 

Share Quest for Health

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.



Share Quest for Health

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.