Mainly copied from a post on my favorite internet oasis:
Let’s back up to right around the time Jonah got the braces. He began experiencing headaches, and, naturally, being a teenage boy, I only just learned of this the past few weeks, when we had the annual sports physical. She prescribed him a mild antidepressant, which is known to help with headaches. She said we’d use this in a very small dose and only for a limited time until we figured out this headache pattern.
Over the past year, when he HAS told me that he had a headache, I’d give him the usual: Tylenol or ibuprofen or even a mix. Nothing touched it. So, he’s been just toughing through them. It’s been about 4-6 months that he’s had some sort of pain on a daily basis.
Another back-track. Jonah has an EXTREMELY high pain tolerance. I’ve told all the dr’s we’ve seen this week that his “2” is probably the average person’s “4-5.” When he’s literally writhing in pain, he’s in some severe pain. Over the weekend, he was trembling and getting facial twitches
The weekend of Nov 7-9, the boys went on the last scout campout till spring. They were swimming in hot springs, riding trams to the top of an Alpine slide, etc. Saturday night, the real pain started to build. Sunday morning, Jonah’s patrol only had donuts for breakfast. By the time they arrived back, about 12:30PM, he was not only starving, but in some pain. Probably a 7 on that pain scale. Got him home, fed him, he went to bed early.
Monday, Nov 10: he was cranky when he woke up. Now, I can see, all the mornings waking him up and he’s been this way he’s had head pain *cue Bad Mom Awards music* By 11AM, he was toast. School called, I brought him home, he curled up in a ball and went to sleep. I called Kaiser to try and get him seen. I did their run-around until I finally got him an appointment on Tuesday
Tuesday, Nov 11: go to Kaiser and he’s trembling. Light sensitive, etc. She’s afraid he has meningitis, so they send us to the other Kaiser 25 minutes away because they have the RADAR clinic, which is essentially an ER. Head down there, they immediately give him an IV, Benedryl and Dilaudin He finally is out of pain. We go round and round the options, and they do a spinal tap…oh, excuse me, lumbar puncture…to assess if he has meningitis. He gabbed with the dr about scouts through the whole thing while I was holding his hand and praying my head off. Afterwards, he said “that hurt like a b***h” (yes, he’s eloquent)
Everything is negative, give him more Benedryl and Percoset, send him home.
Wednesday, Nov 12: takes Percs immediately on waking up. Pain seems okay, we all do our thing during the day, and stay home that night from youth group. Headache is hovering around a 6. Talk to dr in the late afternoon, she mentions blood patch if his pain shoots up.
Thursday, Nov 13: headache when he wakes up. Takes 2 percs, does absolutely nada. Pain shoots from a 4 to 10+ in 10 minutes. We call Kaiser, then we head to Rocky Mountain Hospital for Children in the heart of Denver. Jonah throws up on the way, I’m thinking he’s getting car sick because of the pain. They’re talking blood patch, because they’re thinking this is a spinal headache from the lumbar puncture. Again, IV pain control. Send us home. I make a follow up appointment with his doc at Kaiser here for Monday.
Friday, Nov 14: Incredible pain, vomiting, Phil calls into work, we go back to RMHC, more IV pain stuff (this time it was torodol and Zofran). After lots of discussion, they admit him to observe his pain. He hasn’t eaten since 8AM, we finally got into a room and fed at 7:30. Talk to a different doc, takes long medical history, throws out some possibilities (neurology, headache clinic, etc) Jonah is very happy on the torodol and sleeps pretty sound.
Saturday morning, Nov 15: his first almost pain free day of the week. We’re having fun watching movies, ordering food (they have a GREAT kitchen, BTW) and keeping the room darkened. The new doctor comes (who I liked immediately) She talks to us about the headache clinic, sleep study, the neurologist, acupuncture, taking his braces off etc. Since he’s doing well, she feels it’s okay to let him come home with a script for a nasal Imitrex. Well, it’s 7PM on a Saturday night and I cannot get this filled.
Sunday, Nov 16: he’s sketchy, pain about a 3. I go on a wild goose chase for this nasal spray only to be told no one here has it. By the time I get home at 11-ish, he’s hovering at a 4, light is driving him batty. I packed a bag, expecting to stay again. He climbed again to about a 6 by 1:30, then shot again to a 9 by 2. Pack the car, head on out, he’s vomiting again. The ER doc is the same dude who admitted him Friday night, so he comes in immediately with an injection of Imitrex and IV Zofran and an IV steroid. After 3 hours he sends us home with all sorts of scipts, so I need to stop at a 24 hour Walgreens in a sketchy neighborhood (really, not bad, but not terrific). Steroid pack, Zofran and something like imitrex. That takes an hour. Get home, he’s exhausted, goes right to sleep.
Still with me? God bless you
Monday, Nov 17, we have our follow up. He’s at about a 3-4 with steroid, Zofran and fake imitrex on board. We talk for an hour, she orders the nasal imitrex, signs all sorts of papers allowing him to carry his meds on his person in school, etc. She orders a sleep study and the neuro referral. He stays around a 4 the rest of the night, when he’s coherent enough to tell me.
On Nov 18, when post was originally written, he stayed at 3 or under, without Zofran or imitrex. Keeping on the steroid pack and trying to keep him hydrated. He’s tired so he doesn’t want to drink much. I think he’s finally turned the pain corner since he asked me for pizza at breakfast. I need to call the ortho about taking the braces off for now and putting him in an acrylic retainer until we figure this all out.
This final part of the update, Friday evening, Nov 21: Jonah had the braces removed on Nov 20. Unfortunately, the work, lights overhead and general activity triggered another migraine and he spent a few hours on the Zofran and sleeping. He did wake up foggy, but feeling better. By today, he has had a constant pain level of 1-2! This is HUGE! I’m hopeful that removing the braces was “THE” cure. We are ready to pursue the other treatment/management options.
In all, I pray that our family exhibits trust in Jesus and glorifies Him in all we do. I especially pray that Jonah can grow through this and use it in the future as he ministers to others. As the Apostle Paul write in Romans: ALL things work together for HIS good and HIS purpose. (Romans 8:28)