Gratitude

So it’s been just 1 year since I started this blog, posting regularly every 2 weeks. That was one of my intentions for 2018 and I am so glad I made it happen.  I have learned a lot more about headache management in the process.  I also learned that I do actually know a lot about it already.  Funny how that happens…..

My intentions for 2019 are to keep posting new content, maybe invite some guest writers to contribute. I also want to explore other avenues in the academic world and social media arena to get the word out to other pediatric providers about taking care of kids and teens with headache. To that end, I will have a poster at the National NAPNAP conference in March 2019 in New Orleans.  I have also started using Instagram (vkarianpnp), though I really do not know much about how to use it effectively. That will be another learning adventure. I am hoping my younger colleague will help me out : )

For this post, I thought I might present a list of a few of my favorite things, common occurrences that relate to taking care of kids with headaches. These examples are composites of several patients, not anyone specific.

Here they are, in no specific order:

  • A teen with new daily persistent headache (NDPH) for years comes in for a visit. This patient has attended school daily, engages in a headache-healthy lifestyle, physically and socially active. She is completely functional, working hard and just waiting for this headache to break. She has been working hard on self-care and turning on the relaxation response regularly. Today for the first time, she reports having 5-10 minutes of headache-free time several times/week. We have all waited a long time for this to happen, because it means the start of the end of her NDPH!
  • Tween migraineur who has struggled with an effective rescue plan comes in for a visit. They report that finally we have managed to develop a successful migraine rescue plan, which works consistently. We had gotten creative and it worked!
  • A college freshman comes in for her winter break visit. She had many fears about being away from home with migraines, despite my reassurance that she could handle it and would have more time for self-care. She reports to me: ‘You were right….college has been easier than high school. I didn’t believe you but now I know it’s true.” Score!
  • 15 year-old teen girl, with frequent migraine and difficulty managing a headache-healthy lifestyle, comes for a visit. She reports that her migraine headaches are occurring just once/week, instead of multiple times. What made the difference? “Well I finally figured out that lots of hydration actually works”, she says (after years of trying to get her to drink enough)!
  • Eighteen year-old male patient disabled by headache and mental health issues comes in for follow up. We have tried many medications, approaches such as partial programs, healthy lifestyle approaches. Headache is completely refractory; he is disabled and unable to function, not going to school. I have do not have much to offer, since the mental health issues are paramount, and he is unwilling to go inpatient for care. I ask why they have come in, when I feel I have nothing to offer. His mother responds “because you always listen, are willing to try anything, and you obviously care about us.”
  • Teenager with NDPH has tried everything under the sun without relief of symptoms. She undergoes a short duration lidocaine infusion and we speak on the phone 1 month later to check on the outcome. She reports no change in headache pain (I am disappointed). Then she reports that her mental fogginess is greatly decreased, she was able to get through her final exams without being totally wiped out, and has more endurance and energy. The first of many such reports from patients after lidocaine infusion and unexpected. There was no change in headache pain but other symptoms are better, which helps them function better. A small victory!
  • Another teenager with NDPH for 6 years and episodic migraine, who has had nothing but side effects from every medication ever tried, no positive effect with lidocaine infusion, and reluctant to try anything else comes for a visit. I propose trying occipital nerve and trigger point injections, because why not try a ‘Hail Mary’ pass at this point. We do it and when she comes back in 6 weeks, she reports the constant headache is no longer constant (still daily). And after 3-4 procedures, the chronic headache is pretty much gone until the effect of the injections starts to wear off. She still has migraine but had no ED visit for 9 months- a record. Who knew it would help?
  • Tween girl with chronic tension-type headaches comes for a regular follow up visit. She has considerable neck and shoulder tightness and at her last visit, I taught her the ‘Pinky ball’ exercises to self-massage and stretch. She was a reluctant participant at the time but her mother was interested. She reports today that her TTH are much less frequent now; she is using the pinky ball exercises every night before bed and thinks it has helped. Her mother nagged at her to do it at first but once she started to feel better, was doing it on her own. Tweens are such a tough audience!
  • Twelve year-old boy with chronic mixed-type headache, significant anxiety, ADHD and school avoidance, seen briefly when he stops by clinic during another visit. He had become very disabled, not going to school at all, and just spent 4 weeks in a pediatric pain rehabilitation program to get back in the game. His time in the PPRC was tough, changes were met with much resistance, and there were doubts whether he could maintain recovery when back in his home routine. He reports that he is back in school and going every day, saying he “would rather be in school than in the rehab program and does not want to come back”. The coordination between the PPRC and school resource personnel and the accommodations that were made allowed him to restart school in a positive way. He still had chronic headaches and anxiety but had learned how to manage and cope. Fingers crossed that it sticks!

Taking care of kids and teens with headache is a challenge. You often have to get creative to get improvement, looking at appropriate developmental approaches. You also have to understand that not everyone improves, due to many factors outside of your control.  The interplay between headache and mental health often slows progress. But sometimes improvement happens when we least expect it. That makes the work worthwhile.

Let me know if there are any topics you would like to see in the blog. Always open to suggestions.

Happy New Year!

School and the patient with headache

Over the past year, I have covered many issues and situations in the care of kids and teens with a variety of headache diagnoses.  What is the common denominator for all of them?  SCHOOL!  And your patient can find themselves either very supported or very challenged (or somewhere in between) in the school environment and by school personnel. You just don’t know how it is going to be for them.

Headaches of all kinds have an impact on school attendance and academic success. Unfortunately, headaches are an invisible diagnosis and the treatment of teens with headache vary for so many reasons. There are many preconceived notions out there about headache.

Kids with episodic headaches, either migraine or tension-type, need accommodations mainly around attendance, physical accommodations (lighting, noise, smells), and around getting assignments and exams completed. Typically they would have excused absences for days when they have a severe headache or migraine, as well as allowance for late arrivals or early dismissals.  They could get extra time to get their homework done, and the ability to make up tests if missed around the episode. There would also be the option of manipulating their environment, such as preferential seating, asking for a flickering light to be changes, and so on, depending on what triggers their severe headache or migraine.  All of these accommodations need to come without penalty.

Accommodations can be different and more difficult, for patients with constant headaches, such as new daily persistent headache, or post-concussion syndrome (headache and other symptoms), depending on the level of disability.  Kids might need to attend for a partial day, advancing as tolerated, to full days. They might need a quiet room to rest and recover as needed. They may need to be able to go to the school nurse or guidance office whenever they need to.  These accommodations apply to patients with episodic headache but more flexibility is needed for the patient with chronic/constant headache.

So who decides about the accommodations? Well, there is something called a Section 504 plan which allows for accommodations at school for patients with a disability, such as a medical condition (including headache, migraine, concussion). It requires a letter from a medical professional to support the needs.  It is not the same as an Individual Education Plan (IEP).

Here is the definition:  Section 504 is a part of the Rehabilitation Act of 1973 that prohibits discrimination based upon disability. Section 504 is an anti-discrimination, civil rights statute that requires the needs of students with disabilities to be met as adequately as the needs of the non-disabled are met. Section 504 states that: “No otherwise qualified individual with a disability in the United States, as defined in section 706(8) of this title, shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance…” [29 U.S.C. §794(a), 34 C.F.R. §104.4(a)].

In our clinic we often will provide a letter in support of 504 accommodations with the following language:

“Please allow Name to be tardy, be dismissed early and excuse any absences due to increased headache pain. If absences are occurring more frequently than usual, the school or the family should be in contact with our office.  If Name misses school, is dismissed or is tardy two or more school days per week, please notify our department. Should Name miss school due to increased headache pain or medical appointments, please allow him/her extra time to make up any missed assignments or examinations without being penalized. It is our expectation that Name attend school as much as possible, even partial day.”

We also have the families sign a Release of Information form, so that we can speak with the school personnel if needed.  This is important, as it conveys that our clinic, the family and the school are part of the same team, supporting the student.  I especially make sure I have the expectation for going to school daily as a part of the letter.  I explain that this is not a “get out of jail free” letter; we expect them in school daily unless they are physically unable. And we work with them to help them be able to attend regularly.

There may be other specific accommodations that can be added. This is important for teens with post-concussion syndrome who can be challenged cognitively, need frequent breaks, note takers/scribes, printed work, etc. I ask the student to think about their school day and identify any problem areas. Then we brainstorm about what can be done to make it bearable.  I think it is important for the teens to play an active role in their requests, as it shows that school and learning are a priority for them.

Of course there are limits to how much a school is willing to accommodate a student.  I emphasize strongly to my kids that in order to get what they need, they have to be good citizens at school. They have to make an effort to get to school every day, pass in work on time, show respect for the rules and regulations at school.

Limits are also determined by the specific school personnel; what are their current/past experiences with students with headache, what the message from administration is about attendance, and what the available resources are.  It can be interesting and surprising to hear from school personnel what their perceptions are of the student with headache.

There are many patients who are in supportive environments with adequate accommodations, and who thrive in school. This is the majority of my patients.  However, there are times when the school situation is less than ideal.  There are multiple factors for this, including the reactions of family, personnel, teachers and nurses, past history for all concerned, and inflexible school attendance rules.  It is always best to avoid confrontation, but not always possible.  Sometimes the situation becomes untenable and other avenues have to be taken. In difficult situations, I suggest having an education advocate, a person employed by the family to represent the student’s interests. When finances are an issue, someone connected with their local state representative’s office can be of help. It is always best for the student to have amicable relations with his/her school and that should be the focus.

What is the role of the PCP in all this? It is important to support the student and family and provide credence to their struggles. You can provide the letter recommending an evaluation for 504 accommodations, offer clarification for the diagnosis and treatment, and offer support to all concerned. You can set expectations around the medical diagnosis for the family and the school personnel. You can fill out whatever forms they request.  If needed, you can provide detailed information about the medical diagnosis and any specific accommodations you feel will benefit this patient. You could make a template with specific accommodations for headaches and customize it as needed.

However, I don’t feel that medical personnel need to get involved in conflicts between the family and the school, unless there is genuine discrimination and inequity in the situation.  You might want to check with the family to see if any other providers have supplied letters, to keep the message clear and free of conflicting information.  You want to be supportive but realistic regarding your role as facilitator.  It would be easy to get overly involved and detailed about what is needed. But that may not serve you as the medical professional, and could have a detrimental effect on your therapeutic relationship with the family.

School is a huge part of life for our patients with headaches. Managing the relationships between all concerned can be quite tricky.  Doing it successfully involves the ability to communicate and negotiate, along with providing the appropriate level of care and concern.

Chronic migraine, what to do?

So your patient has developed chronic migraine, which is defined as 3-4 migraine per week, 15 migraine days per month, and is predictably miserable. Developing chronic migraine does happen in pediatrics, but it happens much more often in older teens and adults.  You’ve done what you could to prevent it from happening: did a course of steroids, tried increasing their daily medications, worked on lifestyle issues and even sent them to the ED for a cocktail to break the cycle. The ED visit did help but the effect was not sustained, and your patient is back with frequent migraine again. Now what do you do?

I would suggest that this is the time to refer them to a headache specialist, in a clinical setting where there are experienced providers (MD, NP, psychology), skilled at dealing with chronic headache.   Headache programs are usually staffed by a neurologist, or possibly a pain specialist (and rarely by someone who is both) and also a pain psychologist.  Not every neurologist is interested in caring for kids with headaches but pediatric headache programs can be found all across the country. If there are no pediatric headache specialists in your area, there may be an adult provider willing to see an adolescent .  For children, it might be hard to find an alternate provider.  Pediatric headache programs are most often found within a university teaching hospital setting. Some are found within neurology or within a pain (anesthesia) program.

When patients are referred to our headache program, the initial evaluation is done by the pain/neurologist and a pain psychologist.  There are some up front data collection, including psychological measures (FDI, RCMAS-2, CDI-2, fear of pain index, pain catastrophizing scale), done online, prior to the visit. Their medical records are also reviewed. The families see the neurologist first for full history and physical, and then they seen by the pain psychologist- patient and parents, separately and together.  Then a plan is formulated and reviewed with the family by one of our PNPs.  The plan is usually a combination of medications, lifestyle measures, complementary therapies and often a recommendation for psychology for cognitive behavioral therapy (CBT) or physical therapy.

The overriding message to the patients and families is that this is condition that responds best to a multidisciplinary approach, each part of the plan is important. As you all know, each family is different and their expectations and culture vary widely.  Some families are more than happy to change medications, start supplements, even do PT for head and neck stretching and strengthening.  They may rather just focus on lifestyle measures, like working on hydration and sleep.  One of the hardest things to promote is psychology and CBT. Sometimes the family is well aware of mental health concerns, confirmed with the data from the psychological measures and meeting with our psychologist. They are open to the idea and welcome suggestions for where to seek counseling.

But it is often a hard sell to either the parent or patient or both. I encourage that even if there are no serious psychological challenges, having frequent migraine is a source of stress, and can get in the way of participating in life. Learning CBT can provide the teen with better ways to cope with the pain and underlying anxiety and stress. When meeting with particular reluctance/resistance on the part of the teenager, I emphasize that they are not going to ‘talk about your feelings’, but rather to learn concrete skills to use at times of increased pain and stress.  Sometimes the boys are more reluctant (but not always), and the suggestion to see a sports psychologist is better received. There are phone apps that can be used to augment or introduce the CBT exercises. In the end, there is no better way to engage in cognitive behavioral therapy than with a skilled therapist.

Treatments options for chronic migraine:  There are treatments available in a specialty clinic that are not easily obtained in the community. Providers are more familiar with different classes medications used for migraine.  We might be more comfortable in increasing dosing to a more therapeutic level or use medications in combination.  We might also introduce psychopharmacology to the treatment regimen, if indicated. Getting a good medication history is important to decide if the patient actually had an adequate clinical trial of a medication.  Sometimes patient will come in having tried 4-5 daily medications, over the course of 6 months.  Unless there are significant side effects, brief trials are not adequate to determine whether a medication would be helpful. Unfortunately, families and/or patients can have a ‘quick fix’ mentality and inability to tolerate any symptoms or pain, which leads to changing medications before really determining if they work.  Any medication used as a migraine preventive needs to be trialed for at least 2 months, starting low dose and increasing slowly as tolerated. This same approach should be applied to psychopharmacology as well.  This can be hard to communicate to families but necessary.

There are several inpatient options available for chronic or intractable migraine.  Patients can be admitted overnight for the typical migraine cocktail, using ketorolac IV q6h for 24hours, plus adjuncts and steroids. This can help to break a bad cycle, and generally well tolerated.  Also, IV Depakote can be added with mixed effects, followed by 3 days of oral depakote.

Another option is for the patient to be admitted for several days for IV DHE (6 doses, q8h).  This is less well tolerated, with side effects that need to be treated.  Nausea is significant and DHE is generally pretreated with metoclopramide and Benadryl, compazine, ondansetron or even lorazepam.  This can be effective in resetting the migraine pattern back to episodic. Not always pleasant but worth a try.

There are 2 outpatient injection procedures used to decrease the chronicity of migraine.  First there are occipital nerve and trigger point injections, done with local anesthesia (lidocaine and bupivacaine+/- steroids).  The occipital nerve can be inflamed. Trigger points (areas within muscles that are very irritable) will contribute to migraine, other headaches, and myofascial pain.  The area around the greater occipital nerve, as well as any trigger points in the upper cervical, trapezius muscles is infiltrated with local anesthetic.  Initially, patients feel ‘heavy-headed’ or numb, which passes by the next day or so.  The anesthetic medication blocks pain receptors within the nerves surrounding the muscle, thus reducing the pain signals sent to the brain.  Your patient may feel immediate relief of pain, and then (hopefully) a reduction in incidence of migraine.  Some patients have significant improvement with this procedure; some have no benefit at all.  It is generally well tolerated.

Botox© is the only treatment approved by the FDA for chronic migraine for patients over 18 years.  There are strict criteria for its use and generally insurance companies stick to the rules. We have been able to get approval for a few 16 year olds but this is rare. The criteria includes: 15 migraine days/month, migraines lasting up to 4 hours, failure of several preventive and rescue medications. It is not approved for episodic migraine. Another office procedure, the patient will have 155units of Botox© injected via a 30G needle in 31 specific locations on the face, cranium and neck/shoulders, every 3 months. As you can imagine, this is not the easiest thing for a teenager to go through, causing distress and tears. However, in our practice, we have found it to be fairly effective, with decrease in migraine frequency and intensity in many patients, especially after the 2nd procedure.  It is also generally well tolerated.  Most kids tell me that they hate getting the Botox©, but the results make it worth it.  They joke that they know when it’s time to come back when they move their eyebrows again. I was initially skeptical, wondering if it really worked.  But after performing the procedure many times now and seeing the results, almost all positive, I have become a believer.  There is nothing better than getting kids back to functioning.

Your role: So what happens after your patient is seeing a headache specialist? Does this mean you no longer have a role in managing your patient’s migraines? Of course not! As a headache specialist, I enjoy partnering with primary care providers in the overall care of these patients. The families may come from far away, and only come in to see us every 3-6 months. Their community provider is crucial in supporting the families during the difficult time of chronic migraine. We welcome contact, questions and updates.  These families need as much support as they can get, to keep OUR patient functioning, and avoid disability.

So that’s it for now about migraine. I plan to do a case study next to show migraine management in practice.