5 Rare Syndromes That Parents Should Learn About

I’ve talked about classic and uncommon diseases that parents should learn about before. From acanthosis nigricans to volvulus, they are conditions that are fairly common. Or at least not rare.

There are another group of syndromes that it can be good to be aware of, not necessarily because you will ever know someone that is affected by them, but rather because they are so hard to diagnosis, increased awareness is important.

5 Rare Syndromes That Parents Should Learn About

What are these rare syndromes? They include:

  • Ehlers-Danlos syndromes – now includes thirteen subtypes of connective tissue disorders, at least one of which can cause infants to have repeated, unexplained fractures that can be confused with child abuse
  • Mitochondrial genetic disorders or mito – genetic diseases that can affect multiple organ systems in the body and can cause a variety of signs and symptoms, from developmental delays and muscle weakness to seizures. The type of mutation and whether it is in mitochondrial DNA or nuclear DNA determines the type of mito disorder, of which there are many, including Alpers syndrome, Barth syndrome, Co-enzyme Q10 deficiency, Kearns–Sayre syndrome, Leigh syndrome, MELAS, and Pearson’s syndrome, etc.
  • PANDAS – Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections is characterized by OCD and/or tics that appear or suddenly worsen after a strep infection. With the OCD, these young kids might also have anxiety, including separation anxiety, depression, irritability, regression in their behavior, sleep problems, or school problems, etc. Although it has since been renamed PANS, Pediatric Acute-onset Neuropsychiatric Syndrome, you should still have the “temporal association between Group A streptococcal infection and symptom onset/exacerbations” to have PANS.
  • POTS – teens with Postural Orthostatic Tachycardia Syndrome have dizziness, fatigue, headaches, nausea, difficulty concentrating and other disabling symptoms related to alterations or dysfunction in the autonomic nervous system (dysautonomia). POTS is actually fairly common. What’s rare is for parents and pediatricians to know about POTS, and to therefore get kids diagnosed.
  • Vocal cord dysfunction – often misdiagnosed as asthma, especially exercise induced asthma, and other things, kids with vocal cord dysfunction often have episodes of repeated shortness of breath, chest tightness, wheezing, and coughing – just like asthma. They don’t improve though, even as more asthma medicines are added, which should be a red flag that these kids don’t have asthma and could have vocal cord dysfunction instead.

Have you ever heard of these disorders? No one would be surprised if you hadn’t.

Although a few are indeed rare, even when children do have them, it often takes years and years and visits to many different doctors before many of these kids finally get a diagnosis. That can mean years and years of unnecessary treatments and more importantly, the missed opportunity to get the proper treatment and hopefully relief for your child’s symptoms.

Why don’t all doctors learn more about these conditions so that they can be sure to recognize them as early as possible?

It’s not that simple. For every teen you every see with POTS, there will likely be dozens with vasovagal syncope or orthostatic hypotension. Same goes with the Ehlers-Danlos syndromes, which can sometimes be confused with the more common hypermobility spectrum disorders, which might just cause kids to have some extra aches and pains.

Tips for Getting a Diagnosis for These Rare Syndromes

How can you get a quick, or relatively quick diagnosis if your child has one of these syndromes? A little luck and a lot of increased awareness. This can also help avoid getting diagnosed when your child probably shouldn’t.

“Vocal cord dysfunction is an asthma mimic. Diagnosis of this condition requires a high index of suspicion if unnecessary treatments are to be avoided.”

Varney et al on The successful treatment of vocal cord dysfunction with low-dose amitriptyline

It can especially help to understand that:

  • Children with EDS often score 6 out of 9 on the Breighton scale.
    Children with EDS have hypermobility and often score 6 out of 9 on the Beighton scale. (Photo by Cattalini et al CC by 4.0)

    you might suspect that your child has one of the Ehlers-Danlos syndromes if they seem to be “double jointed,” often complain of growing pains, have a lot of sport’s injuries, poor wound healing, and/or skin that is hyper-extensible.

  • mitochondrial disorders are rare and children often don’t have classic signs or known genetic defects that make getting a diagnosis easier. There are checklists of signs, symptoms, and physical exam findings to look for, testing that can be done, and family history to look for, that may help if you suspect that your child has a mito disorder. Why would you suspect that your child has a mito disorder? They might have unexplained low muscle tone (hypotonia), muscle weakness, poor growth (failure to thrive), seizures, and lactic acidosis.
  • there aren’t always easy blood tests that help to make these diagnoses. Even when there are, like in the case of PANS/PANDAS, an elevated strep titer, some health care providers will make a diagnosis with a titer that isn’t really elevated or isn’t rising. Or in a child that has had no evidence of a strep infection. You should suspect PANDAS when a younger child (before puberty) suddenly develops (abrupt onset) obsessions, compulsions, and/or tics.
  • since many teens have issues with dizziness and fatigue, to make a diagnosis of POTS, they should have a real tilt test which demonstrates that their heart rate goes up at least 30 to 40 beats per minute within 10 minutes of going from a supine (lying down) to a standing position. The problem is that many health care providers do the tilt testing improperly, getting heart rate and blood pressure measurements at the wrong time. The easiest way to do a tilt test (active stand test) is to have the child lie down for a good 10 minutes, and check their heart rate and blood pressure. Then have them stand up (being careful they don’t faint) and check them again immediately, noting the differences.
  • although vocal cord dysfunction can be triggered by the same things and have the same symptoms as asthma, the treatments are greatly different. Instead of asthma inhalers, kids with vocal cord dysfunction learn breathing techniques and might get voice therapy. Other clues that a child might have vocal cord dysfunction include normal pulmonary function tests, that they have stridor, instead of wheezing, and that episodes come and go more quickly than a typical asthma attack.

With a prevalence of about 1 in 5,000 people, the average pediatrician might never see a child with EDS or a mito disorder.

Pediatricians are much more likely to see kids with PANDAS, POTS, and vocal cord dysfunction. More awareness  of all of these syndromes can help make sure that kids get a quick diagnosis and proper treatments.

A referral to a pediatric specialist or team of specialists can also be helpful if you suspect that your child has any kind of rare or unexplained syndrome.

What to Know About Getting a Diagnosis for These Rare Syndromes

Your pediatrician can help if you suspect that your child has any of these difficult to diagnose conditions.

More on Getting a Diagnosis for These Rare Syndromes

Can You Skip Your Newborn Baby’s Eye Ointment?

A lot of what happens in the delivery room and newborn nursery once your baby is born is routine.

Tragically, skipping some of this routine care, from a RhoGAM shot to the vitamin K shot and hepatitis B vaccine, is becoming standard for some anxious parents.

Some even want to skip getting the antibiotic ointment that is placed on their baby’s eyes that can help prevent ophthalmia neonatorum, which can lead to blindness.

Ophthalmia Neonatorum

Since we don’t usually think of pink eye (conjunctivitis) as a serious disease, it is likely hard to imagine that neonatal conjunctivitis (ophthalmia neonatorum) could lead to blindness. It does though – or did.

Ophthalmia neonatorum due to Gonococcus infection.
Ophthalmia neonatorum due to Gonococcus infection. (Photo by Murray McGavin CC BY 2.0)

The main cause was Neisseria gonorrhoeae, a sexually transmitted infection that could be passed to a baby when they were born. Similarly, Chlamydia trachomatis can cause ophthalmia neonatorum.

That ophthalmia neonatorum could be prevented was first discovered by a German gynecologist in 1881. Dr. Carl Siegmund Franz Credé instilled a drop of silver nitrate into a newborn’s eyes immediately after they were born and this greatly decreased the rates of infections in babies born in his hospital.

Today, erythromycin ophthalmic ointment and povidone-iodine have largely replaced the use of silver nitrate for preventing ophthalmia neonatorum, but it works on the same principle – killing any bacteria that might cause neonatal conjunctivitis, especially those that cause blindness.

Can You Skip Your Newborn Baby’s Eye Ointment?

Why skip a treatment that can prevent your baby from getting an infection that can lead to blindness?

Gonococcal ophthalmia neonatorum caused by a maternally transmitted gonococcal infection.
Gonococcal ophthalmia neonatorum caused by a maternally transmitted gonococcal infection. (Photo by CDC/ J. Pledger)

Since ophthalmia neonatorum is generally caused by gonorrhoea and chlamydia, most parents who think about skipping their baby’s eye ointment are likely fairly confident that they don’t have one of these sexually transmitted infections. And most of them will likely be right.

In fact, some countries, including Australia, the UK, Norway, Denmark, and Sweden, have stopped routine ophthalmia neonatorum prophylaxis. Some just treat those babies who are at high risk for infections, especially if they didn’t receive prenatal care or have a maternal history of STIs, etc.

In the United States, routine use of erythromycin 0.5% ophthalmic ointment within 24 hours of a baby’s birth for the prevention of ophthalmia neonatorum is still the standard of care. In fact, it is required by law in many states.

What are some of the issues to consider when thinking about skipping your baby’s eye ointment?

  • the incidence of gonorrhoea and chlamydia have been increasing in recent years and it is very possible to have these STDs without obvious symptoms
  • up to 30 to 50% of babies born to a mother with gonorrhoea or chlamydia will get neonatal conjunctivitis, even if they had a cesarean section
  • not all pregnant women are routinely tested for gonorrhoea and chlamydia
  • ophthalmia neonatorum caused by gonorrhoea or chlamydia can very quickly lead to permanent scarring and blindness
  • ophthalmia neonatorum caused by gonorrhoea or chlamydia is not as easy to treat as routine pink eye, often requiring hospitalization and systemic antibiotics
  • gonorrhoea and chlamydia aren’t the only bacteria that can cause severe neonatal conjunctivitis

Most importantly, if you are thinking about skipping your baby’s eye ointment, know that places that routinely stopped using eye ointment to prevent ophthalmia neonatorum often  saw an increased incidence of gonococcal ophthalmia, while rates remain very low in the United States.

“The annual figures for ON reported during the study period, under statutory health protection regulations, underestimated the actual occurrence of this disease by a very substantial amount.”

Dharmasena on Time trends in ophthalmia neonatorum and dacryocystitis of the newborn in England, 2000–2011: database study

And you are likely to get worried every time your baby has a little eye discharge or redness, just like parents who skip vaccines worry when their child has a fever or cough.

Since the eye ointment that is used is safe (erythromycin doesn’t cause the irritation that silver nitrate used to in the old days), why take the risk of an infection that can lead to blindness?

What to Know About Skipping Your Baby’s Eye Ointment

The use of erythromycin eye ointment after your baby is born can help to prevent a serious infection that can lead to blindness. Don’t skip it.

More on Skipping Your Baby’s Eye Ointment

Common Foot Problems That Your Kids May Have

Do your kids ever complain about problems with their feet?

From athlete's foot to toe walking, your pediatrician can help evaluate your child's foot problems.
From athlete’s foot to toe walking, your pediatrician can help evaluate your child’s foot problems. Photo by Vincent Iannelli, MD

If not, they probably will at some point…

Common Pediatric Foot Problems

Fortunately, not all of those complaints will be caused by real problems.

Some will be though, so it is important to learn about common pediatric foot conditions (comprehensive information is provided in the links below), including:

  • ankle sprains – it is typically good news to hear that your child only has an ankle sprain and that nothing is broken, but that doesn’t always mean a quick recovery. A moderate or severe ankle sprain can mean a recovery plan that takes up to 6 to 12 weeks! Remember the RICE protocal (Rest, Ice, Compression, and Elevation) and an age appropriate dose of a nonsteroidal anti-inflammatory drug, like ibuprofen or naproxen, if your child has a mild sprain, and see your pediatrician if your child sprains their ankle and has severe pain, can’t bear weight on their foot, or isn’t getting better.
  • in-toeing – unless a baby’s foot is rigid (a sign of club foot), in-toeing is usually normal and doesn’t require treatment. That’s despite what you may hear from grandparents who swear up and down that they remember wearing special shoes when they had in-toeing. While they probably did, that isn’t routinely done anymore, as most kids grow out of their in-toeing without treatment.
  • out-toeing – also usually normal and doesn’t require treatment with special shoes or casting, like they did “in the old days.”
  • athlete’s foot – common in older teens, who can have dry, scaling skin on their feet that itches or burns, especially between their toes, athlete’s foot (tinea pedis) is less common in younger children who are more likely to have JPD. Athlete’s foot can usually be treated with an over-the-counter antifungal medication. If it doesn’t go away after a few weeks, it is time to think of another diagnosis, consider if your child might have a secondary bacterial infection, or if a prescription oral medication might be necessary.
  • fungal nail infections – in addition to athlete’s foot, kids can also get a fungal infection in their toe nails (onychomycosis). If mild, a topical antifungal medication may be all that is needed to treat your child’s fungal nail infection, but oral antifungal drugs are usually needed.
  • plantar warts – sometimes confused with corns, plantar warts are common in kids and can be treated with over-the-counter remedies when they become bothersome.
  • blisters – if your kids are active, or if they are relatively inactive, but you end up on a long walk on a vacation, they will likely end up with a friction blister on their feet at some point. What do you do? Apply a hydrocolloid gel bandage (readily available over-the-counter) to the blister, draining large blisters if necessary.
  • ingrown toenails – common in teens who pick at or trim their toenails too short, ingrown toenails (onychocryptosis) can become really bothersome when they become infected. If soaks and antibiotics don’t help, the ingrown toenail may need to be surgically removed. Make sure your kids wear shoes that fit properly and trim their toenails straight across to prevent them from getting ingrown toenails.
  • heel pain – many active pre-teens and teenagers have pain in their heels. It is often caused by Sever disease (think of it like growing pains instead of a “disease”) and can be treated with heel pads or cups, icing after sports, stretching exercises, and symptomatic care.
  • flat feet – while parents often complain that their kids have flat feet, most have flexible flat feet and don’t need treatment. On the other hand, some rigid flat feet, which is more rare, and might require treatment. Does your child have an arch when they stand on their tip toes?
  • overpronation – does it seem like your child’s ankles bend inward when he stands or walks, even to the point that he wears out the inside parts of his shoes quicker than the outside? While it can be normal, if it is leading to foot, ankle, knee, or back pain, then your child likely needs arch supports for his shoes (pronation insoles) or custom made orthotics.
  • toe walking – while normal before age two to three years, children who continue to toe walk after age three to five years, especially if they always toe walk or refuse to walk in a normal heel-to-toe pattern should have an evaluation and will likely need therapy to help them walk properly.
  • bunions – can kids really get bunions? They can, presenting with a big bump at the base of their big toe (juvenile hallux valgus), which will turn toward the second toe.
  • bunionette – when they occur at the base of your child’s little toe, the painful bump is called a bunionette.
  • corns and calluses – often confused with a plantar wart, you can often tell the difference between a corn or callus and a wart because warts disrupt normal skin lines and might have little black ‘seeds’ inside them (broken blood vessels). If you still aren’t sure, just remember that warts are more common than corns and calluses in kids.
  • curly toe – kids with curly toes have underlapping toes and while it often doesn’t cause symptoms, when it does, surgery can fix it.
  • juvenile plantar dermatosis – JPD is often confused with athlete’s foot, as they have similar symptoms – red, scaling skin on the feet and toes. JPD, which is also called sweaty socks syndrome, occurs in younger kids and spares the toe webs though, and it is not caused by a fungus. Wearing cotton socks, and changing them frequently, shoes that fit well, and applying a moisturizer and steroid cream can treat JPD.
  • foot odor – does your child have smelly feet? While you likely want to blame a fungus, stinky feet are usually caused by a bacterial infection, an infection that might cause a very mild rash on the bottom of your child’s feet that can go unnoticed – and smelly feet. It can be treated with a topical antibiotic ointment, not letting shoes get wet, and changing sweaty socks often.
  • sweaty feet – a lot of kids have sweaty feet and unfortunately, that can lead to some of the problems listed above. Some have really sweaty feet (plantar hyperhidrosis) though, to the point that they have to change their socks several times a day. It might also help to buy super absorbent insoles for all of their shoes, moisture wicking socks (Drymax and Copper sole socks, etc.), absorbent foot powder, and mesh type shoes.

Need extra help with your child’s feet?

See your pediatrician. Depending on the issue, a pediatric dermatologist, pediatric orthopedic surgeon, or a podiatrist with expertise in pediatric conditions might also be helpful.

What to Know About Common Pediatric Foot Problems

From athlete’s foot and blisters to plantar warts and sweaty feet, there are many foot problems that parents should learn about and hopefully learn to prevent.

More on Common Pediatric Foot Problems

Prescribe These Inexpensive Medications for Kids, Not Tho$e

The Auvi-Q epinephrine injector retails for over $2,500 each.
The Auvi-Q epinephrine injector retails for over $2,500 each, but it is recommended that folks have at least two!

Folks are no longer surprised when outrageous drug prices make the news.

Remember the $600 EpiPens?

We got less expensive alternatives after folks complained and there was a lot of media attention, but many other drugs are still expensive.

Did you know that there is a diaper rash cream on the market that costs over $600? What’s startling, is that the cream, Vusion, is simply made up of three ingredients that are available over the counter – miconazole (an antifungal drug), zinc oxide, and petroleum jelly.

There is also a pill for pinworms, Emverm, that costs $600!

Saving Money on Pediatric Prescriptions

There is one very easy way to save money on your next pediatric prescription.

That’s right, make sure your child really needs it.

No, that doesn’t mean not filling your pediatrician’s prescription, but it can mean simply asking if a prescription medication is really necessary the next time your kids get sick. Unfortunately, many conditions are over-treated, from ear and sinus infections to pink eye and reflux.

Also, when your child does need a prescription, instead of asking for a coupon, ask if a lower cost, generic alternative might be appropriate.

You can also:

  • make sure the medication is covered by your drug plan, if you have one
  • get a 90 day supply if it is a medication that your child uses long-term, like to control asthma
  • ask about optimizing your child’s dose so that they don’t need multiple pills, for example, taking one 30mg capsule is likely less expensive than taking two 15mg capsules each day
  • see if an alternative form of the same medication might be less expensive. For example, a tube of mupirocin (Bactroban) cream is a lot more expensive than a tube of mupirocin ointment, although both forms of the topical antibiotic can be used in the same situations. Similarly, ondansetron (Zofran) syrup is more expensive than ondansetron orally disintegrating tablets, which is often used when kids have nausea and vomiting.

To save money on prescriptions, you might also use a service like GoodRx, to search for the lowest prices at nearby pharmacies. Especially if you have a high deductible or if a medicine isn’t covered by your insurance, it can sometimes be cheaper to use GoodRx, or a similar service with discount cards, than to go through your insurance plan. And remember that some pharmacies, like at Walmart, offer many $4 generic drugs.

Lastly, ask your pediatrician for samples and go through the manufacturer’s patient assistance plan for help paying for your medicines.

Prescribe These Inexpensive Medications, Not Tho$e

Still can’t afford your child’s prescription?

Fortunately, there is almost always an alternative medication that is less expensive, but will work just as well, that you can ask your pediatrician about. It doesn’t do your child any good if your pediatrician prescribes a medication, but you don’t get it because you can’t afford it. Ask about an alternative instead.

In general, if you need a coupon to get the drug, you can expect that it is an expensive medication. And even if the coupon makes it affordable for you, remember that someone is still paying for it, and in the end, that’s likely going to be you in the form of higher insurance rates.

Will any of these alternatives work for your child?

 

Expensive Drug Less Expensive Alternative*
Vusion (diaper rashes) use Lotrimin + Triple Paste
Advair, Dulera, Symbicort (asthma) generic AirDuo1
Moxeza or Vigamox (pink eye) ofloxacin oph drops2
Auvi-Q (epineprine inj) generic Adrenaclick or EpiPen3
Emverm (pinworms) Reese’s Pinworm Medicine (OTC)
Omnaris, QNasl, Veramyst (allergies) generic Flonase (fluticasone propionate) or Nasacort (triamcinolone) (OTC)
Patanase (allergies) azelastine
 Suprax (UTI) trimethoprim/sulfamethoxazole or Cefdinir4
Suprax (ear infection) high dose amoxicillin or Augmentin or Cefdinir
Ciprodex, Cipro HC (ear drops) ofloxacin oph drops5
Vyvanse, Mydayis (ADHD) generic Adderall XR or Adderal6
Aptensio, Cotempla XR-ODT, Daytrana, QuilliChew ER & Quillivant XR (ADHD) generic Concerta or Ritalin6
EpiDuo, Ziana (acne) benzoyl peroxide/clindamycin
or Differin (OTC)
Solodyn, Doryx (acne) minocycline, doxycycline
Sklice, Ulesfia (lice) spinosad (Natroba) or an OTC treatment
Nexium (GERD) lansoprazole (Prevacid)7 OTC
Cutivate, Elocon, Topicort (eczema) triamcinolone 0.1% cream
 Clarinex (allergies) loratadine (Claritin)8 OTC
Xyzal (allergies) cetirizine (Zyrtec)8 OTC
levalbuterol (Xopenex) (asthma) albuterol8
Patanol, Pataday, Pazeo  (allergies) Zaditor9 (OTC)

*To be clear though, these aren’t direct brand name to generic equivalents. Most are less expensive alternative medications that many pediatricians use every day though. Many were once the primary treatment and were found to work well. They were eventually replaced by newer medications, which were thought to work better, even though there are rarely head-to-head studies that actually prove that they work better than older, now less expensive medicines.

  1. AirDuo – this is a generic preventative asthma inhaler, which like Advair, combines fluticasone propionate and salmeterol. The main downside? It can’t be used with a spacer.
  2. Before looking for lower cost antibiotic eye drops to treat pink eye, you should maybe reconsider the need to treat pink eye in the first place. Most experts now think that pink eye is usually a viral infection, and even when it is caused by a bacteria, unless it is severe, it will likely go away without treatment. Most importantly, keep in mind that according to the AAP, “exclusion is no longer required” for kids with pink eye if they are in daycare or school, which is often why many parents seek treatment in the first place.
  3. Epinephrine injectors are lifesaving medicines for kids with food allergies. They were one of the first medicines to expose how drug coupons helped drug prices soar (the $600 EpiPens), while parents got free medicines for their kids – at least if they had insurance and a co-pay to worry about. Those paying cash or who had a high deductible plan were stuck with high priced drugs. Less expensive epinephrine injectors are now available, but one of the most expensive medicines on our list is back – Auvi-Q. Although the manufacturer advertises that it is available for just $0 for commercially insured patients, each injector pack (comes with 2 injectors and a trainer) actually costs up to $2,500! And since it is recommended that kids have multiple injector packs to store in multiple places, the real price is at least $5,000.
  4. Suprax (cefixime) was once a popular antibiotic for UTIs, especially once it became generic. Then, because it was maybe not popular enough, they stopped making it. It came back though, but not with a generic price tag. Some push it as a better choice for kids with persistent ear infections, but keep in mind that when mentioned on the list of antibiotics in the AAP ear infection treatment guide, it is suggested that when multiple antibiotics have failed, “a course of clindamycin may be used, with or without an antibiotic that covers nontypeable H influenzae and M catarrhalis, such as cefdinir, cefixime, or cefuroxime.” There is likely no benefit to using Suprax by itself or over a less expensive antibiotic.
  5. Can you really use ofloxacin ophthalmic drops in a child’s ear? Yes, although it is an off-label treatment. You just can’t use otic (ear) drops in a child’s eyes. While eye drops are sterile, ear drops aren’t. And for some reason, eye drops are less expensive than ear drops.
  6. Most newer, once a day ADHD medicines are expensive. Some aren’t even covered on insurance plans. Generic medicines are going to be less expensive than newer brand name medicines and short acting stimulants, like Adderall and Ritalin, are the cheapest. Your child just has to take a repeat dose around lunch time.
  7. In many ways, we have come a long way in treating infants with reflux. Gone are the days of using medicines with dangerous side effects, like Propulsid (cisapride) and Reglan (Metoclopramide). Now, if they have gastroesophageal reflux disease (GERD), they are usually treated with an antisecretory agent to reduce acid and pain, but not necessary reduce the amount of spitting up. This can include histamine H2 receptor antagonists, like Zantac (ranitidine), and proton pump inhibitors (PPIs). Before Nexium packets for delayed release oral suspension became available, we had Prevacid Solutabs, which are now available OTC. This would be an off-label treatment.
  8. Clarinex and Xyzal are new classes of medications that turn a drug made up of a racemic mixture (Claritin and Zyrtec) into a single enatiomer. Basically, these drugs are made up of two mirror images of themselves. The theory is that if you make a new drug with just one of those mirror images, then it will work better and cause less side effects. For the great majority of people, these new drugs just cost more. Xopenex was one of the first drugs to use this method, as it is just the R-enantiomer or isomer of albuterol = levalbuterol. Does it work better than albuterol? No. Some people do think that it has fewer side effects, so it might be worth a try if your child gets very jittery or gets an elevated heart rate when he takes albuterol.
  9. Why try an over-the-counter medicine when prescription medications are available? Many medicines that are now over-the-counter, from Allegra and Claritin to Flonase and Nasacort, used to only be available with a prescription. Like these and many more medications, Zaditor allergy eye drops was once a prescription drug. It is available for kids who are at least three years old and might be worth a try before you spend money on a more expensive allergy eye drop.

In general, just remember that the “latest and greatest” medication isn’t always the greatest. Sometimes it is just newer and more expensive. Don’t be afraid to ask about an alternative if it is too expensive.

What to Know About Saving Money on Pediatric Prescriptions

Medications can be expensive, but there are things you can do to try and save money the next time your kids get a prescription from their pediatrician.

More on Saving Money on Pediatric Prescriptions

Teen Depression Screening

It is estimated that only about half of teens with depression get diagnosed and then, only about half of them get treated.

We should do better.

And we can, if we start routinely screening all teens for depression.

Teen Depression Screening

The idea of having pediatricians screen for depression isn’t new.

And it hasn’t always been just about screening kids for depression.

In 2010, the American Academy of Pediatrics began to recommend that pediatricians screen new mothers for postpartum depression using the Edinburgh Postpartum Depression Scale or a simpler 2-question screen for depression.

“The primary care pediatrician, by virtue of having a longitudinal relationship with families, has a unique opportunity to identify maternal depression and help prevent untoward developmental and mental health outcomes for the infant and family.”

AAP on Incorporating Recognition and Management of Perinatal and Postpartum Depression Into Pediatric Practice

Next, in 2014, the AAP began to recommend that adolescent depression screening begin routinely at 11 years of age. This recommendation was added to the 2015 Recommendations for Preventive Pediatric Health Care, a policy statement that was published by the AAP Committee on Practice and Ambulatory Medicine and the Bright Futures Periodicity Schedule Workgroup.

They also continued to recommend screening for maternal depression at 1-, 2-, 4-, and 6-month visits.

A score of 3 or higher on the PHQ-2 could be a sign that your child is depressed.
A score of 3 or higher on the PHQ-2 could be a sign that someone is depressed and needs further evaluation.

The latest recommendation is that all “adolescent patients ages 12 years and older should be screened annually for depression (MDD or depressive disorders) with a formal self-report screening tool either on paper or electronically (universal screening).”

Other depression screening tools are also available, including the:

In addition to yearly depression screening, the latest guidelines also talk about the need to establish treatment plans and safety plans for teens who are depressed.

Signs and Symptoms of Teen Depression

Let your kids know that there are hotlines to call if they ever need to talk to someone when they are feeling anxious or depressed.

Do you think your teen is depressed?

Have they been sad or angry on most days?

Does it seem like they don’t care about their usual activities anymore, aren’t sleeping well, are always tired, or have had a big change in their weight recently?

Are they doing poorly at school, seem extra sensitive to criticism, or have a lot of unexplained aches and pains?

Has your teen had thoughts of dying or suicide?

Call your pediatrician if you think that your teen is depression, or seek more immediate help if you think that your teen might hurt themselves.

Does your teen know how to TXT 4 HELP?
Does your teen know how to TXT 4 HELP?

Unfortunately, signs and symptoms of depression aren’t always easy to recognize in teens.

Hopefully, with universal depression screening, more teens will get diagnosed as early as possible.

What to Know About Depression Screening

It is recommended that pediatricians screen all teens for depression each and every year.

More on Depression Screening

What to Do About QVAR Being Redesigned

Do your kids have asthma?

What medicines do they take?

Asthma Medications

Kids with asthma basically get treated with five types of medications, including:

  • inhaled short acting bronchodilators – albuterol nebulizer solution, levalbuterol nebulizer and HFA (Xopenex), ProAir HFA, ProAir Respiclick, Proventil HFA, Ventolin HFA
  • oral steroids – prednisolone, prednisone
  • inhaled steroids -Alvesco, Asmanex Twisthaler, Flovent HFA or Diskus, Pulmicort Respules, Pulmicort Flexhaler, QVAR RediHaler
  • inhaled long acting bronchodilators
  • montelukast (Singulair) – a leukotriene receptor antagonist that can help prevent asthma and allergy symptoms

Two of these, inhaled steroids and inhaled long acting bronchodilators, which are typically used in combination products (Advair, AirDuo, Dulera, and Symbicort), are commonly used every day to prevent asthma symptoms and asthma attacks.

How Kids Take Asthma Medications

Asthma is one of those conditions that should be a lot easier to control than it usually is.

Although many preventative medications are available, they typically have to be used every day and the medications have to be given with a nebulizer (takes time) or an inhaler (requires good technique).

A spacer allows younger kids to use asthma inhalers.
A spacer allows younger kids to use asthma inhalers. Photo by Vincent Iannelli, MD

Fortunately, younger kids who can’t yet learn to use an inhaler can get around this by using their inhaler with a spacer or a spacer with a mask.

How do spacers work with your child’s asthma inhaler?

The medicine from the inhaler goes in the spacer and then the child can just breath it in, not having to coordinate, or time when they breath, with when the medicine actually comes out of the inhaler.

What’s the problem?

More and more drug companies are switching to dry powder inhalers. These are great for older kids, who can easily master the necessary technique – a quick, deep breath. But they are still too hard to use for younger kids and can’t be used with a spacer.

“In a systematic review, the mean percentages of patients who used their inhalers without mistakes were 63% for metered dose inhalers (MDIs); 75% for breath-actuated MDIs; and 65% for dry powder inhalers (DPIs).”

Haughney et al. on Choosing inhaler devices for people with asthma: Current knowledge and outstanding research needs

Others are switching to breath-actuated aerosol inhalers that are also too difficult for younger kids to use (they must close their lips around the mouth piece and inhale deeply) and also can’t be used with a spacer.

The Redesigned QVAR Inhaler

While some companies still make two versions of their inhalers, a traditional metered dose inhaler (MDI) and a dry powder inhaler (DPI) or breath-actuated device, more and more have just one option.

QVAR, which has long had the popular inhaled steroid QVAR HFA in 40 and 80 mcg strengths, has now switched to a breath-actuated device.

While the availability of the QVAR RediHaler is good news, as some experts think that breath-actuated devices are better than coordinated devices, the bad news is that they dropped their older QVAR inhalers which could be used with a spacer.

Be careful that your pharmacy doesn’t switch your child from QVAR to QVAR RediHaler unless you think it is appropriate.

So what are your options if your child needs an inhaled steroid?

  • Is your child old enough to learn how to use the QVAR RediHaler or a DPI inhaler, like Asmanex Twisthaler, Flovent Diskus, or Pulmicort Flexhaler? Online videos and demonstration devices can help teach your child.
  • Is your child’s asthma under poor control, so that QVAR wasn’t a good option anymore anyway, in which case your child might need a step up to a combination inhaler that can be used with a spacer, such as Advair, AirDuo, Dulera, or Symbicort?
  • Is your child’s asthma under such good control that your pediatrician might consider a step down off daily inhaled steroid therapy, so that you can stop using QVAR?
  • Do you have a nebulizer and so can use budesonide (Pulmicort) respules instead?

Although the fact that it has “a spacer-free design” is being used as a selling point for the new QVAR RediHaler, that doesn’t help those kids who still need to use a spacer. For them, the easiest option is to simply switch to another brand of steroid inhaler that can still be used with a spacer. These include Flovent HFA (44, 110, and 220mcg) and Alvesco (80 and 160mcg). Both are usually more expensive than QVAR though, which is what made QVAR popular. These other inhalers also might not be covered by your insurance plan.

The Future of Asthma Inhalers

Now that the patents on HFA inhalers are expiring, instead of making inexpensive HFA inhalers, to keep drug prices high, drug companies are developing new delivery devices that they can patent. What’s surprising, is that QVAR is made by Teva, which traditionally makes “lower cost” generic medications.

“Daddy, why can’t they put my asthma medicine in a spray-can like they do hair spray?”

Stein et al. on The History of Therapeutic Aerosols: A Chronological Review

In 1955, a young girl asked her father a simple question and a few months later, the first MDI for asthma was developed.

Can asking a simple question about asthma inhalers get us such quick results today?

Let’s see…

AirDuo-RespiclickWhy isn’t someone making inexpensive asthma inhalers?

Teva did recently get approval for their AirDuo brand and generic inhaler.

A combination of fluticasone propionate and salmeterol, AirDuo is similar to Advair. It is different in that the three strengths of AirDuo (55/14, 113/14 and 232/14 mcg) don’t exactly match the three strengths of Advair (45/21, 115/21 and 230/21 mcg), but at about 25% of the cost, few folks likely care. They might care that AirDuo is only available in a RespiClick version (a dry powder inhaler), and so can’t be used with a spacer.

Ironically, Teva’s AirDuo generic inhaler, a combination inhaler, is less much expensive than their QVAR inhaler, which only contains a steroid.

We will hopefully see more generic versions of more inhalers, including more that stay in a traditional non-breath-actuated, non-DPI form. And more asthma inhalers that are much less expensive.

What to Know About QVAR Being Redesigned

The redesign of QVAR and other asthma inhalers to breath actuated and dry powder versions can mean that they can’t be used with spacers and so can’t be used by infants, toddlers, preschoolers, and younger school aged children with asthma.

More on QVAR HFA Being Redesigned

Child Access Prevention Laws and Gun Safety

There are many types of gun violence that gun safety advocates are concerned about, including:

  • homicides
  • mass shootings
  • school shootings
  • suicide
  • unintentional shootings

The problem isn’t just gang-bangers killing themselves, as some people who try to minimize the gun violence problem try to claim.

The American Pediatric Surgical Association, in an editorial about Firearms, Children, and Health Care Professionals, does a good job in pointing this out.

They state that “the risk of firearm homicide, suicide and unintentional injuries is more than 5-fold greater in the United States than 23 other high-income countries considered collectively. Firearm-related injury and death are issues for all Americans, in all communities. The risk of dying by firearm is the same for residents of the largest cities as it is for the residents of the smallest counties and holds true for adult and pediatric patients alike. This parity in risk is due to the predominance of firearm suicides and unintentional firearms deaths in the rural counties and the predominance of firearm homicides in the urban counties.”

Gun Safety Laws

Many new and proposed gun safety laws will hopefully help to reduce gun violence, including:

  • universal background checks and the closure of the gun show loophole
  • mental health restrictions for gun purchases
  • limitations on access to high-capacity magazines and assault-style weaponry
  • repealing the Dickey Amendment, which restricts the CDC from doing research on gun violence
  • child access prevention (CAP) laws

And we need to make mental health services more readily available to those who need them.

The March For Our Lives and National School Walkout events in March are already pushing lawmakers to make changes to keep kids safe from gun violence.
The March For Our Lives and National School Walkout events in March are already pushing lawmakers to make changes to keep kids safe from gun violence.

Surprisingly, many of these gun safety laws are supported by most members of the NRA, even if they are strongly opposed by the NRA itself.

CAP Laws

Most gun safety advocates are pushing for stronger CAP laws as a way to decrease the number of children injured and killed by unintentional shootings.

CAP laws work to limit a child’s access to guns in and around their home.

All too often, a toddler, preschooler, or older child will find a loaded, unsecured gun under a bed, on a nightstand, or in a closet, etc., and unintentionally shoot themselves or another family member.

“The safest home for a child is a home without guns, and if there is a gun in the home, it must be stored unloaded and locked, with the ammunition locked separately.”

American Academy of Pediatrics

CAP laws are not just about accidental shootings though. Kids who get access to unsecured guns also use them in suicides and school shootings.

Studies have found benefits to CAP laws, including declines in unintentional firearm death rates in children, decreases in non-fatal gun injuries, and decreases in suicide rates among teens.

Current CAP Laws

While some states have some sort of CAP law on the books already, many others don’t.

In Texas, “A person commits an offense if a child gains access to a readily dischargeable firearm (a firearm that is loaded with ammunition, whether or not a round is in the chamber) and the person with criminal negligence and failed to secure the firearm (to take steps that a reasonable person would take to prevent the access to a readily dischargeable firearm by a child, including but not limited to placing a firearm in a locked container or temporarily rendering the firearm inoperable by a trigger lock or other means) or left the firearm in a place to which the person knew or should have known the child would gain access.”

However, many other states, including Alabama, Alaska, Louisiana, Maine, New Mexico, Ohio, South Carolina, Washington, Vermont, and Wyoming, don’t have any kind of laws that would prohibit allowing kids access to unsecured firearms.

Again, that is a surprise since even the NRA advises that it is a gun owner’s responsibility to “store guns so that they are inaccessible to children and other unauthorized users.” They also state that it is a basic gun safety rule to “always keep the gun unloaded until ready to use.”

Some other states have weak or limited CAP laws that simply make you criminally liable if a child or teen gets access to a gun and uses it in a felony. For example, in Oklahoma, it is “unlawful for any parent or guardian to intentionally, knowingly, or recklessly permit his or her child to possess any of the arms or weapons,” but only if they are “aware of a substantial risk that the child will use the weapon to commit a criminal offense or if the child has either been adjudicated a delinquent or has been convicted as an adult for any criminal offense.”

And no states have all of the features of a comprehensive CAP law, which most experts advise would:

  • define a minor as being under 18 years for long guns and under 21 for handguns (in some states, a minor is only those who are 13 years old and under when it comes to child access prevention laws)
  • require that all firearms be stored with a locking device
  • impose a criminal liability on people who negligently store firearms where a minor could gain access, even if the firearm is unloaded and the minor doesn’t gain access or use the firearm
  • impose civil liability for damages if a minor gains access to a firearm that was stored negligently and causes damage after firing it

California is getting close though and is often thought of as being a leader in gun safety laws. Their CAP law was amended in 2013 (the Firearm Safe and Responsible Access Act) to make it a misdemeanor to leave an unsecured gun where a minor could find it, even if they don’t, in addition to being a misdemeanor or felony if they find and use the gun. Gun dealers also have to post warning signs educating gun buyers about the state’s CAP law.

Proposed Gun Safety Laws

According to the Giffords Law Center to Prevent Gun Violence, there are pending gun safety bills in at least 23 states, including many bills that would strengthen background checks.

Still, only 27 states and the District of Columbia have child access prevention laws.

And there is currently no national CAP law.

A bill that was introduced in 2013, the Child Gun Safety and Gun Access Prevention Act of 2013 would have come close by amending the Brady Handgun Violence Prevention Act to make it “unlawful for any licensed importer, licensed manufacturer, or licensed dealer to sell, transfer, or deliver any firearm to any person (other than a licensed importer, licensed manufacturer, or licensed dealer) unless the transferee is provided with a secure gun storage or safety device.”

Another version of the bill that was far more broad would also “Prohibit keeping a loaded firearm or an unloaded firearm and ammunition within any premises knowing or recklessly disregarding the risk that a child: (1) is capable of gaining access to it, and (2) will use the firearm to cause death or serious bodily injury.” It would also have raised the minimum ages that young people could purchase and possess handguns and long guns.

The Child Gun Safety and Gun Access Prevention Act of 2013 never made it out of committee though. It’s not hard to imagine that by “by raising the age of handgun eligibility and prohibiting youth from possessing semiautomatic assault weapons,” the bill, introduced by Congresswoman Sheila Jackson Lee from Texas, could have prevented the latest school shooting at Stoneman Douglas High School in Parkland, Florida.

Hopefully stronger gun safety laws will now be passed in more states and we will see fewer unintentional shootings and other tragedies that occur when kids find unsecured guns or buy their own, including AR-15 style guns.

parkland-survivor

In addition to other measures to reduce gun violence, the American Academy of Pediatrics supports safe storage and CAP laws.

What to Know About Gun Safety Laws

As we see more and more gun violence, including school shootings, something has to be done to protect our kids and keep them safe.

More on Gun Safety Laws