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.