Child In Pain: Where do I start?

Thursday, December 22, 2011

Where do I start?

Hello. I'm a Pain Parent. I feel like I have so much to say to other parents who have children in chronic pain. But where do I start?

I'll keep fiddling with this blog until I figure out a way to post a timeline of my daughter's pain. We'll call her Harriet. She got a migraine on July 17, 2010 that has never stopped. Never ever. Excruciating pain, nausea, and sensitivity to light and sound every day and every night for almost a year and a half now.

We've seen neurologists by the dozen, chiropractors, physical therapists, counselors, pain psychologists, an otolaryngologist and a naturopathic doctor. Three hospitalizations, horrific medical procedures and a list of meds as long as your arm. Nothing touches Harriet's pain. (We are now on the trail of a possible new diagnosis and solution, but more about that later.)

During this journey, I've met a few other Pain Parents. It seems we're all having a similar experience. Doctors try a few things, get stumped, and then say it's depression or it's for attention. Then they tell you this is just "your life now." Never mind the child screaming in pain and pulling her own hair in agony. Never mind the basketball-playing, cross country-running, martial-arts-medal-winning kid who has had to give up everything to sit in a dark room alone with her pain.

No one tells you how to care for a child with chronic pain. No one tells you what to try next. And no one tells you how to handle it when your child begs, "Mom, it hurts SO BAD, please help me!" ... and you have nothing left to try.

And let's not forget the healthy kids in the family - we also have to make sure we're parenting them, too.

My heart breaks for the other Pain Parents out there, but I am so thankful for the ones I've gotten to know throughout this experience. If you have a child in chronic pain, YOU ARE NOT ALONE. There are other parents out there struggling not to cry when it's a three-month wait for an appointment with another specialist, putting on a brave face when the umpteenth prescription fails to help, and doing our best not to assault unfeeling receptionists and medical "professionals" who see no urgency in the fact that a child is hurting.

Email me any time for a shoulder. I may ask the same of you! Together I hope we'll be a little stronger than when we're alone.

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Timeline: My Child's Pain

July 17, 2010: Harriet got a migraine – pain, light and sound sensitivity, nausea, the whole shooting match. She’s had them a few times before, so no worries – we just gave her her meds and put her to bed. But it didn’t work this time. Before the month is out, we’ll go to her doctor twice and the emergency room once, complete an MRI and bloodwork, and we’ll start chiropractic care.

August 2010: Still trying different meds and Harriet has to drop out of cross country. Another trip to the ER.

September 2010: Local neurologist has “tried everything,” including various meds as well as trigger point injections. Harriet is referred to a pediatric headache specialist.

October 2010: We give up on chiropractic, which only seems to be making things worse. Pediatric neurologist tries different meds and sets Harriet up with a pain psychologist and biofeedback. Bloodwork shows a CoQ10 deficiency.

November 2010: The migraine is worse than ever. A one-week hospitalization with meds that make Harriet throw up every 6 hours help her pain very little. By now, side effects from meds have made her lose about 20 pounds, and she was slender to begin with. We worry about her weight but continue to try everything the doctors recommend.

December 2010: We see a neuromuscular dentist, who diagnoses TMJ and recommends a $5000 dental orthotic that he says will help, so we get Harriet fitted for that. She mourns the fact that she can’t be on the basketball team this year.

January 2011: Small improvement with the dental orthotic, but not enough to improve Harriet’s quality of life. School is a struggle. Revolving door of meds gives Harriet terrible side effects, including panic attacks.

February 2011: Headache is getting worse again. Lots of missed school. We’re getting adjustments to the dental orthotic every two weeks.

March 2011: Harriet is frantic with pain. The pediatric neurologist admits her to the hospital again. A spinal tap shows nothing out of the ordinary. Five days in the hospital and nothing works. Another pediatric neurologist examines Harriet for less than 5 minutes and says, “There’s nothing left for you but psychiatry.” Harriet is inconsolable that there is no hope. They discharge her from the hospital with her pain at a 10 on the 0-10 pain scale, with no recommendations for what to do now. We decide to try going to Diamond Headache Clinic.

April 2011: A full week in the hospital in Chicago with the Diamond Headache Clinic. No new diagnostic tests, although bloodwork shows mild anemia. Harriet’s pain goes from a 10 to an 8. DHC puts her on an MAOI, which comes with all kinds of restrictions for diet and other meds that can have life-threatening interactions. We start cranio-sacral physical therapy to help with the muscle pain in Harriet’s neck, back and shoulders.

May-August 2011: No real improvement in pain, but the MAOI is making Harriet gain 10 pounds a month. She is stressing out about her weight and has stopped sleeping altogether. She stays up around the clock most days. Counseling helps us all deal with the stress of chronic illness. The one bright spot is physical therapy, which is really helping her muscle pain.

September 2011: Harriet is switched to a different MAOI, which resolves the sleep problems but the weight gain continues. No improvement in her pain. Our doctor leaves the practice at Diamond Headache Clinic so we wait to see a new one there in October

October 2011: We meet the new DHC doc: Dr. Personality. Her first question is, “How is the depression?” It goes downhill from there. At our insistence, Harriet is taken off of the MAOI. By now she has gained almost 60 pounds with no improvement in her pain, so why keep on this path? On our own, we take Harriet to an ENT, who says her “migraine” really sounds like occipital neuralgia to him. He does a nerve block in his office that gives Harriet the most relief she’s had since this started. ENT orders an MRI of Harriet’s sinuses and neck, and refers us to a local pain management doctor.

November 2011: Pain management doctor agrees with the occipital neuralgia (ON) diagnosis and does a more precise nerve block. More relief for Harriet. We start researching ON and find out about nerve decompression surgery. Dr. Personality scoffs at the idea of decompression surgery, saying it’s “too soon” … when Harriet has been in pain for well over a year. We ignore Dr. Personality and schedule a consult with Dr. Fancypants, a plastic surgeon who does decompression surgery, to see if Harriet is a candidate. We’ve stopped all meds except a muscle relaxer and Harriet is less of a zombie now.

December 2011: Another visit to Dr. Personality, who again asks about depression. When asked why she keeps bringing that up, she says, “Well… Harriet seems quiet.” We remind her that Harriet HAS A MIGRAINE. Undeterred, Dr. Personality wants to re-try antidepressant meds, and we refuse. We don’t schedule another appointment with Dr. Personality, and we go see Dr. Fancypants for our consult. He is wonderful, his nurse is wonderful, and he recommends nerve decompression surgery as well as sinus surgery. Harriet seems hopeful and encouraged for the first time in months and months. We hold our breath to see what the insurance company says.

January 2012: To our joyous surprise, our insurance authorizes coverage of Harriet’s surgery.

More updates to come…