What’s Up?

What’s Up with Me?

This morning I woke up feeling sick to my stomach. Unlike my son, feeling crappy doesn’t keep me from eating nor do I sleep all day. Even though I was nauseated and loopy, I managed to finish my first chapter of my book. Working with Sarah Fader as my book coach starting last week, I’ve drawn up character sketches, a book outline, and a draft of the first chapter. The first chapter focuses on childhood up to eighth grade: born in San Francisco, five years in Saudi Arabia, two years in Massachusetts, ending the chapter in Rancho Palos Verdes. The second draft will begin with our move to Valley Forge, Pennsylvania. My goal is to have a working draft by the time I attend the Sunriver Writers’ Summit in late May.

Parenting a High Needs Chronically Ill Teen

My 17-year old son’s been sick and suffering from migraines (again, still, nothing new). He frequently gets ill, has had migraines since he was a toddler, and struggles with anxiety and depression.
Honestly, I’m exhausted trying to care for him, trying to take him to doctors’ appointments when he won’t or can’t drag himself out of bed, trying to get him to eat when he doesn’t feel well, trying to get him out of bed and to school. He’s been a very challenging kid to parent. Now he’s a young man — a sweet, highly intelligent, and handsome young man — but difficult to help, difficult to parent. I’ve tried. Oh, how I’ve tried.
Recently my husband took him to his psychiatrist (my son has an army of specialists). They agreed on lowering his topiramate dose. My son doesn’t like the negative cognitive side effects of topiramate, nicknamed “Dopamax.” When I took it as a mood stabilizer over a decade ago, I was a complete idiot. My son can’t find words or understand concepts as quickly as he once did. He complains that he used to read his Spanish vocabulary once and had it memorized. Now he has to read it multiple times. I told him, “Welcome to everyone else’s reality. Most people must study harder than you do.”
My son keeps hoping that he’ll outgrow the migraines, which he still may, for testosterone protects against migraines. He had asked to see an endocrinologist hoping he’d be prescribed testosterone, but the pediatric endocrinologist wouldn’t prescribe it. He just told Matthew that he had delayed puberty (late bloomer), and that he’d catch up.
When I heard that the psychiatrist again suggested lowering the topiramate dose, I emailed his neurologist who responded that it was a bad idea, for his migraines return whenever the dose is reduced. Got him back up to his therapeutic dose, but he’s still not 100%. Last night he threw up, as he did once last week. Migraines + viral illness = miserable son sleeping 24/7.


24 responses to “Quick Update”

  1. Raising a teen is a challenge and when he’s sick it magnifies all of the difficulties of adolescence. On the other hand it sounds like you are getting some good advice from your writing coach.

  2. He used to get them 4 to 5 times a week. He takes 100 mg Topiramate extended release (Trokendi XR). Topiramate reduces severity and frequency. He takes a triptan for symptom relief, but mostly benefits from sleep. He’s had migraines his whole life.

  3. I really sympathize with the migraines. They can be hell, and I’m so sorry your son has to deal with them at such an early age. Being a teenager is hard enough without a chronic source of pain and I can imagine that being a parent is hard enough without that added complication.
    I suffer from migraines too and I also take Topamax, 75 mg. It’s hard to tell if it really works, but the side effect of feeling dopey or confused fortunately went away after a couple of weeks. What helps me more than anything is Sumatriptan but I’m only given 9 pills which are supposed to last a whole month, and I often have migraines 4 or 5 days a week.
    Good luck finding a treatment option that works for him! If I ever find any miracle cure I’ll let you know.

  4. […] I hired Sarah Fader as a book coach, and with her help realized that I have a memoir in me. I’m starting to see them as two separate projects — a memoir and a collection of […]

  5. Sending my Anniversary wishes for your parents, Kitt. Spring Equinox will follow a few days later all depending on what Mother Earth (climate change) will crank out. Hope you will maintain balance during this period.
    Take Care !!!

  6. Thank you! Haven’t had a chance to read the emails yet. Take care. Seems your brain is working well.

  7. Sent you some possibilities this morning that might help you with Matt’s conditions. You seem exhausted, but glad Sarah Fader is helping you meet your May deadline with your book
    Attended a meeting this morning to watch a 1.5 hour DVD presentation portion of “Magnificent Mind at Any Age” by Dr. Daniel G. Amen, M.D. It was a very impressed on how to add 14 more years to your life. Hope you will be feeling better soon for St. Patrick’s Day is a big occasion for you to handle.
    God Bless + Take Care !!!

  8. Hot toddy! Great idea.

  9. Exactly. I’m truly fed up with trying to help my son. Luckily, he’ll soon be an adult. We’ll still love him and help him, but the onus of seeking medical care will be his. Unfortunately, now there doesn’t seem to be a cure, just inadequate treatment of symptoms.

  10. Kitt – I am deeply sorry you are not feeling good….The weather factor is always been hard…I would highly recommend you try a green team honey, lemon, and some brandy…This should be the best medicine for your quick recovery…

  11. Forgiveness not required Kitt, I totally understand where your coming from as it does induce crude, agitated, impatient, frustrated and absolute swearing after the 500th time of change or useless waiting to ‘see’ if something works or is about to plaster you all over the ladies/gents room (from either end….or both) 😀 🙁

  12. Getting his therapeutic dose up will help. Whenever any virus is making the rounds, he’s flat on his back. I just hope that his health improves.

  13. Thanks, Mark. Chronic illnesses suck. (Forgive the crude language. Simply expresses my opinion best right now.)

  14. I’m so sorry you’re feeling under the weather and that your son continues to struggle with chronic pain. That’s no fun, to put it lightly. I hope that his “army of specialists” can find something to alleviate his symptoms.

  15. It is a struggle when your body tests you like that. I have an immune disorder that reacts to nearly everything I eat, I’ve resorted to walking around chewing on carrots or anything that is raw and not even slightly processed while I rebuild my stomach after a lifetime of mistreatment. You have my empathy for your journey Kitt, it can be very frustrating 😀

  16. Thank you. I wish you the best with the CBD oil. Luckily “Dopamax” helps. Unfortunately, the cognitive side effects are frustrating, especially for someone as bright as my son,

  17. Thank you, Dyane. I miss reading your posts. Would love to connect sometime “offline.”

  18. Thank you, Cindy. It’s been 17 years. My son’s wonderful, kind, sensitive young man who lives with chronic pain.

  19. I’m sorry you’re not well and that your son is struggling! I’m impressed with what you’ve done on your book though!!

  20. Oh, man I’m so sorry you’re both suffering 🙁 I started having migraines at 4 and it’s been a lifetime of them (40+) It was so tough. Nothing has ever helped. I remember my time with dopamax!! Right now I’m trying the “controversal” CBD oil made from hemp/cannabis. There is no THC in it so it’s legal. There have been lots of good info on it. There has been good success for kids with seizures. It makes sense it would help with migraine too. I’ve just started trying it. I hope he feels better, ASAP. <3

  21. Thank you for this update, Kitt! I’m impressed you hired a book coach. It will be extremely helpful to be held accountable by someone else with whom you’ve developed a good rapport and who has published heaps of books.
    My heart goes out to you about your son. You’re amazing—you’ve worked SO hard for years and years to help him. You’ve been an incredibly devoted mom in the face of an extremely tough situation. I hope with all my heart he outgrows the migraines. I also hope you no longer feel sick to your stomach as well! You were so productive in spite of that. XoXoXo

  22. I am so sorry you all are going through this.

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