My daughter was in acute pain for a year of her teen life before we finally found the appropriate diagnosis, practitioners and restorative protocols. And before that, she lived in a state of frequent, recurring pain for a year-and-a-half. I am not writing this piece to lay blame or fault our doctors; for the most part, my daughter was treated by compassionate, dedicated physicians and nurses whose goal was to relieve my teen’s pain.
However, my daughter and I believe strongly that more doctors and practices need to be familiar with AMPS so that it can be considered in standard diagnosis of unexplained pain.
My daughter almost lost her entire sophomore year of high school to her unexplained pain. And, in hindsight, we realize that she was experiencing intermittent pain symptoms for the majority of her freshman year. We have created this website to present another possibility for families who are trying to find a cause and treatment plan for undefined pain.
We are not medical professionals. You must seek the opinion of skilled physicians to determine an appropriate diagnosis and safe course of treatment for your child. We designed this site simply to give you the language to ask questions that stretch beyond the common ailments that plague today’s teens. AMPS is simply another consideration. Knowing about AMPS allows you to investigate other avenues of therapies with your doctor.
http://www.chop.edu/centers-programs/center-amplified-musculoskeletal-pain-syndrome
I faced many. And, like so many other aspects of parenting, I handled some better than others. By profession, I am a quasi-expert of adolescents. I teach 11th and 12th grade English, specializing in writing, language and rhetoric. However – not surprisingly – not many of those skills prepared me to help my daughter navigate her AMPS pain or her journey toward recovery.
1. Nothing is more unbearable than watching your child in pain. And, of course, not finding a solution to that pain compounded my parental struggle. Being a witness to my daughter’s daily anguish was debilitating. Her pain hurt me. My inability to find a solution hurt me. My inability to find a solution hurt her. Our relationship suffered and it seemed to infect so many other aspects of my world. I began to feel like enjoying other aspects of my life was a betrayal of my daughter. How could I care about enthusiastically presenting a lesson to my students about the impact of a well-placed fragment, while leaving my own daughter at home alone, in so much pain that I left her food in a cooler at her bedside so she wouldn’t have to try to stand? Was it mom-treason to enjoy cheering for my one daughter at her volleyball game while her twin sister struggled to get through her school day in a wheelchair?
2. You can neither feel nor measure another person’s pain. I could not feel what my daughter felt and I was therefore compelled to ask her, “How are you feeling?” all the time. And since the truth was that she was essentially always in pain, answering my unchanging question definitely made things worse. Today, having come through the other side of her AMPS pain, if I ask my daughter why my “How are you feeling today?” questions were so frustrating to her, she can explain that it was simply because the answer was always the same. She hurt. A lot. All the time. And when I asked, it gave her reason to focus on the pain and articulate its sameness and unremitting nature. But it was hard. I wanted to know, mostly because I wanted her answer to be, “I feel good today.” Over time, I realized that my asking was for me, not for my daughter. Her AMPS doctors helped me to understand that I needed to let my need for feedback go, because I was only forcing my daughter to stay focused on her pain.
3. People will surprise you. And, unfortunately, not always in a positive way. My daughter and I both learned much about those around us as she struggled with her pain. Some of her peers were incredible and supported her unconditionally. And some of her peers (sadly, even a few she considered to be her closest friends) became additional obstacles my daughter had to overcome. Her most encouraging friends offered to carry her backpack at school when she couldn’t bear weight on her leg; they pushed her wheelchair when she could no longer hobble through our 2000-student high school. Her most disappointing friends accused her of exaggerating her pain to get attention; they mocked her condition because her symptoms didn’t present like common teenagers’ injuries. The same was true with my own adult friends and my daughter’s teachers and coaches. Some were genuinely supportive, while others were distrustful, disrespectful and even overtly derisive. Even one orthopedist told my husband that he was, “pretty sure [my daughter] was faking her pain to get out of gym class.” For what it’s worth, my daughter was a three-season varsity athlete as a ninth-grader; physical education was one of her favorite periods of the day. We sought a new orthopedist.
4. You must become your child’s advocate. For me this meant educating myself as much as possible because nothing in my English literature or language degrees prepared me to understand terminology like “neuropathic pain,” “patellar femoral syndrome” or “lumbar sympathetic block.” But finding accurate, trustworthy sources of information was very difficult, particularly since I didn’t know what I was searching for and every specialist we met with explored a different aspect of my daughter’s pain. In every doctor’s office, I scribbled phrases I didn’t recognize or understand. Then I came home and spent hours Googling them. Then I cross-referenced them with phrases that seemed to define my daughter’s daily existence like, “unexplained knee pain,” “insomnia” and “stabbing.” Often, the internet was a grim place and I had to be careful not to be swallowed by worst-case-scenario pessimism. But finding the right information was critical in helping me make the best choices for my daughter. And it was amazing to me how often I was required to make those decisions, and how often my daughter’s doctors placed that responsibility on me.
5. Coordinating your child’s care can feel like a full-time job. And one that I was not trained to do. Too often I felt like I was running interference between physical therapist and pain management specialist, between neurologist and orthopedist, between anesthesiologist and nurse practitioner. I was terrified that I would explain something inaccurately, resulting in an inappropriate course of treatment. But eventually I learned that, with persistence, practitioners can be encouraged to speak to one another. However, it was very difficult to accomplish this task and, not until my daughter became a patient at CHOP did we truly experience a team-driven approach to her care.
Full disclosure: I am a high school teacher; I have been working with teenagers for 24 years. Moreover, I work in my home district, which means my three children have been students in my school.
And yet, even with the added knowledge and awareness of the building’s layout (it’s a quarter-mile from one end to the other and has stories on each side) and the rules and protocols that come with being a veteran teacher in my daughter’s own school, I struggled to get everyone on board with the modifications my daughter needed to get through the school day.
Our school nurse was indispensible to me. You will need to get a hold of yours ASAP. An in-person conversation with her helped me to understand exactly what the nurse needed to legally provide my daughter with the physical accommodations she required during her bouts of pain. She needed a doctor’s note that listed specifically the modifications and assistive devices we would and/or might need. For example, on some days my daughter could walk reasonably well and on others she needed crutches.
As her pain progressed and her mobility decreased, she also tried a cane and eventually a wheelchair. Each of those devices needed to be specified on the note(s) we brought from the doctor. Additionally, my daughter required use of the school’s elevator – that also needed to be specified on the doctor’s note, as did her 5-minute pass (a daily pass that allowed her to leave class early so that she could move between classes safely in the hallways of our 1900+ student school) and her backback buddy (a classmate who was willing to carry her 36-lb backpack or, later, push her wheelchair).
The school’s legal red tape can easily frustrate a family whose primary concern is its child’s pain. However, the school is legally-bound to require the student and her family to provide medical need in writing. Often, doctors’ offices don’t quite recognize the importance of specificity when they write their notes to schools. A little gentle guidance from the parent as the medical office prepares her child’s school note can make the child’s return to school a lot smoother. And always keep a copy at home for your records.
My daughter had an excellent guidance counselor who worked closely with our school nurse and psychologist to create a 504 plan for my daughter which provided her with appropriate classroom/testing accommodations based on her medical diagnosis.
My daughter’s 504 plan granted her special seating during both classroom lessons and exams, that would allow her to stand and stretch her leg as needed to mitigate the pain while working. (One of her teachers found her doctor’s request to seat her in the back of the room so she could stretch every fifteen minutes to be unreasonable. However, having the 504 plan in place required the teacher to legally provide her accommodation.)
The 504 plan also allowed her to make up any time lost because of the need to move around or stretch. And finally, the 504 Plan required that her teachers allow her extra time to make up work that she missed because of medical absence. (One of my daughter’s teachers didn’t seem to understand that she couldn’t teach herself the day’s missed lesson and do the homework required for the following day, when she had spent most of that day at the hospital, anesthetized for a Lumbar Sympathetic Block. The 504 plan allowed her to ask for an extra day to catch up.)
This link to the New York State Education Department explains the purpose and use of 504 plans:
http://www.p12.nysed.gov/specialed/publications/policy/testaccess/guidance.htm
There are many sites available to help you understand how to initiate the 504 process, such as the Understood.org site below:
https://www.understood.org/en/school-learning/special-services/504-plan/understanding-504-plans
It is helpful to familiarize yourself with the protocols that must be followed by the school personnel so that you know what to expect as the process moves forward and what you and your child can reasonably request on his/her 504 accommodation list.
My daughter got healthy.
In March, she was attending school sporadically and in a wheelchair. In April she went to CHOP, met with Dr. Sherry’s AMPS team and came home with a plan. In May and June she went through intense physical therapy and a pretty significant Neurontin/Gabapentin withdrawal (we found out 100-lb. Katie was taking more Neurontin per day than my husband’s 220-lb. friend with MS), resulting in acute migraines. But, by July, my daughter was back; she was able to attend leadership camp at Harvard University and her friend sent me a picture of her scaling a 20-foot rock wall on a challenge course!
Don’t get me wrong; my daughter worked her butt off to get there. She was in pain and exhausted a lot of days. But she did it. We went to PT 4 times a week and the other 3 days a week we set up a routine for her at home. We converted my upstairs hallway into an exercise station, using painter’s tape to mimic the set-up at CHOP. We bought desensitizing tools from Amazon, like a hand-held massager and a nubby massage glove. I borrowed a stationary bike from a friend and set it up in my living room. I hung a clipboard on the wall and she was required to log in her exercises every day.
And in September she started her junior year with excitement.
But by mid-fall, my daughter was experiencing intense migraines with aura. They started like the ones she experienced the previous spring (during the drug withdrawal phase) but got progressively worse.
By the winter, she was missing multiple days of school per week. The migraines caused extreme dizziness, total loss of appetite (she lost a lot of weight), partial loss of vision and acute nausea, in addition to the pain. She was hospitalized twice, as the only way to relieve the pain was with IV drugs (Toradol, Reglan and Benadryl).
She had seen 2 different neurologists, been prescribed steroids (Medrol dose pack), Sumatriptan (Imitrex), and was taking frequent oral doses of Toradol, Reglan and Benadryl in addition to a host of OTC NSAIDs, was locked in her room in complete silence and total darkness and missing school before I suddenly realized, “Kim, we’ve been here before!”
I called CHOP and they made an immediate appointment for us. Within a week we had seen the AMPS team and had a new plan for my daughter. Admittedly, exercising a head is a bit more complicated than exercising a knee, but she did it. She forced herself to eat, despite the nausea. We went back to good old Amazon and got a scalp massager. We also visited our ophthalmologist and he determined that my daughter would benefit from reading glasses. After a little research, we learned that she seemed to have a sensitivity to electronic light, so we had her lenses made from a new material that reduces blue light. I also contacted the teachers at our school and urged them to re-set their SmartBoards (almost every classroom in our high school has them now) to a lower light setting. I learned, after doing a little research, that the default setting was the brightest possible setting and there were many lower settings teachers could use that did not impede the SmartBoard’s usability and would definitely help students who suffer from light-induced headaches.
My daughter’s phys ed teacher was also willing to move her from her soccer unit to another teacher’s yoga unit. She learned some relaxation techniques that I believe she will carry with her as she heads into college.
And by March, she was whole again. We have learned what the signs of an AMPS flare up look like and hopefully with every recurrence Katie will learn to recognize them earlier and earlier. My daughter’s world has a few rules that we need to maintain to try to keep those flare ups at bay:
STAY ACTIVE. AMPS loves inactivity. Keep your muscles and nerves moving appropriately so that they don’t forget the right way to function.
Reduce anxiety. Stress abounds, but learning ways to control the stress is important. There are lots of good at-home ways to minimize stress. The Dartmouth University website has a great series of short meditations for the end of the day.
YouTube also offers some quick ways to use acupressure and breathing techniques. These are do-able coping mechanisms that a teenager can really use.
Eat regularly and healthily.
And stay hydrated.
Don’t be afraid to live your life!
Insurance companies are hard to navigate, even when they understand the diagnosis. But AMPS is a fairly unknown condition and you may have a challenge getting your insurance company to understand it, and/or code it properly.
My physical therapist’s office was diligent and helpful. Programs like the one at CHOP will also likely offer you help as you navigate the insurance process -- take them up on that help! For example, my insurance company didn’t understand (or care) why Katie needed to many PT visits. But when your kid needs to go 4x/week, you use a lot of visits very quickly.
One thing I learned that I will share with you is that insurance companies like data. My physical therapist took initial measurements of Katie’s knee. He measured the level of swelling with a tape measure (around the joint) and he took other measurements of the limits of her range of motion with a goniometer. In this way, as she improved, he was able to send them more than just the 0-10 pain scale data.
Be persistent.
It’s an innocent enough question. But it’s also a question the CHOP team taught me to stop asking.
They helped me to understand that, while my intentions of measuring and cataloging my daughter’s pain were good (I wanted to completely explain every step of her condition to the doctors), all I was doing was encouraging my daughter to perseverate on the pain. AMPS rehab is partly about re-training the brain to not focus on, nor anticipate the onset of, pain.
Thus, Katie and I formed a pact: She promised to tell me if she had pain that required my attention; and I promised to respect her ability to endure or work through the pain, without asking her to quantify it. It was hard. But it made a big difference.
And there were days when she looked gray and awful. Her pallor was bad; her eyes were sunken. And believe me – I wanted to ask. But why? I already knew from looking at her that she was hurting. But did her pain require my attention? Seemingly not. So I just let it go and turned my nervous energy into supporting her efforts to push through.
On a related note, I started seeing a CSW to work through my issues and fears with Katie’s AMPS. That made a big difference too.