Babygirl failed to improve with the first two migraine treatments yesterday. So Neurology and Nephrology put their heads together and picked a third move. Steroids.
Cortisone-family steroids are a two-edged sword for sure. Babygirl takes prednisone 5 mg. daily. This is the lowest she's been on: At various times she been on twenty times as much, and some of the other 'flavors' of the drug (prednisilone among them) have been used in substantial doses as well. Prednisone is one of her anti-rejection medications. Its benefit is that it keeps her immune system from 'seeing' the new kidney. The other benefits of this class of drugs is that they can act as potent anti-inflammatories.
The down side of this class of drugs is a terrifying list of side effects. It makes you more likely to get infections. It causes osteoporosis, weight gain and diabetes. And long-term daily use can convince your adrenal glands that they are no longer needed in a crisis. Steroids are our foes.
And that last one is something no one really thinks about. Your adrenal glands do more than run your fight-or-flight responses. Or to be more precise, you need your fight-or-flight responses in many subtle ways aside from the ability to lift cars off of injured children.
Which brings us to Babygirl. Migraines have an inflammatory component, so high-dose steroids are frequently given to break protracted migraine attacks. This was tried once a couple of weeks ago, although strictly speaking she got a more moderate dose and a rapid taper. So trying a true high-dose pulse is a reasonable thought. Steroids are our friends.
But Babygirl has a fever, origin unknown. Steroids can make infections worse. Her heart has been racing, and her blood pressure is too low OFF of all of her antihypertensive medications. So adding more steroids seems, theoretically, to be a seriously bad idea until you think of this: Her adrenal glands should be producing adrenaline (epinephrine) and other hormones to increase her blood pressure under stress, and they are not. That 5 mg. of prednisone is telling her adrenal glands that they are not really needed right now, thank you. So her body's secondary defenses (fever for example) are trying too hard to fight something that they are not designed to fight.
So they have two reasons to give steroids. Therefore we are in the process of receiving "stress dosing." This is my first experience with using hydrocortisone as anything but a topical cream for bug bites. Babygirl is getting large doses IV every six hours. I failed to ask "how long?" Clearly we aren't going to make it home in time to go Christmas tree hunting this afternoon. I'm homesick.
DeeDee
Showing posts with label migraine. Show all posts
Showing posts with label migraine. Show all posts
Sunday, December 2, 2012
Monday, November 26, 2012
How Can You Know....
How can you know for sure that your child isn't avoiding school? The sunglasses were back on this morning, and she complained again of neck pain. Don't get me wrong - she had a headache on Sunday, but it wasn't so bad that she needed the glasses, and she went to church. She didn't appear to me to avoid the family gatherings, but she complains that school is 'too noisy.' She rarely wakes up with a severe headache on a Saturday, or maybe she does and just takes her meds and goes back to sleep so I don't notice.
Certainly when the headaches started there wasn't a doubt in my mind that they were all totally legitimate. There were too many odd complaints, and she looked terrible. Heck, last WEEK she looked terrible.
I don't know what it was about this morning that made me wonder. There was a lack of the emotional intensity, perhaps. But maybe it was apathy. Maybe it was denial.
Maybe what I am hoping for in the back of my mind is that it's all fake, and therefore there is nothing at all serious to worry about. As the countdown to testing continues, my anxiety is a noticeable presence in my life. There's a big part of me that really doesn't want to know what is wrong. If we don't do the tests, we can keep calling this migraine and not worry about it, right? And if she's pretending, I can just get her a counselor and shove her out the door to school every day.
But I've had to stop using my favorite lotion because the smell makes her head hurt. And she won't chew her favorite gum because the smell of spearmint makes her head hurt. It's only those two smells. Who makes up stuff like that?
DeeDee
Certainly when the headaches started there wasn't a doubt in my mind that they were all totally legitimate. There were too many odd complaints, and she looked terrible. Heck, last WEEK she looked terrible.
I don't know what it was about this morning that made me wonder. There was a lack of the emotional intensity, perhaps. But maybe it was apathy. Maybe it was denial.
Maybe what I am hoping for in the back of my mind is that it's all fake, and therefore there is nothing at all serious to worry about. As the countdown to testing continues, my anxiety is a noticeable presence in my life. There's a big part of me that really doesn't want to know what is wrong. If we don't do the tests, we can keep calling this migraine and not worry about it, right? And if she's pretending, I can just get her a counselor and shove her out the door to school every day.
But I've had to stop using my favorite lotion because the smell makes her head hurt. And she won't chew her favorite gum because the smell of spearmint makes her head hurt. It's only those two smells. Who makes up stuff like that?
DeeDee
Saturday, November 3, 2012
Curing Migraine....
Two years ago when my migraines suddenly took over my life, I got a LOT of suggestions for things that would improve the situation. Now that Babygirl is riding in the same boat (I HOPE it's the same boat - I really don't want anything worse than migraine!) I am getting a ton more.
I'll do my best to cover some ground here.
First, I DO believe in massage, manipulation, chiropractic care and so on. I have had manipulations done while I was having migraines. It worked beautifully. But it didn't stop the headaches from coming back, and it is not a skill a lot of people have. Massage is wonderful, but for me it tends to accentuate an active headache, and it's difficult for me to assess whether it decreases frequency.
With Babygirl, treatments that involve having someone touch her are difficult. As a toddler we discovered that she as some Sensory Integration Dysfunction. She was extremely sensitive to clothing, shoes, socks and so on. I think her current love of skinny jeans stems from the fact that they apply even pressure from her waist to her ankles, no tickly flapping material. She wears fairly tight camisoles under her tops, and I think for the same reason. She is so severely ticklish that CHOP anaesthesia has made note of it. She requires extra sedatives for procedures because touching her belly makes her pull up her knees and giggle, even when heavily sedated. She HATES back rubs, pedicures and shampoos at the hair salon. However effective these treatments might be for her, she cannot, oddly, tolerate them.
Various herbs and natural products have been suggested. Because her anti-rejection medications have many, many interactions with other drugs (and potentially with food, IE grapefruit, and herbs) we have been advised to not allow her to use them. Topical peppermint oil seems to make her worse, while it seems to make me feel better.
Someone suggested sports drinks like Gatorade to help increase potassium. Usually her diet is fairly potassium-rich, and her blood tests always show her potassium levels to be at the higher end of normal. But we are also forbidden to use sports drinks. The salt/sugar/potassium combo is not at all good for people with kidney disease. It is true that hydrating her helps the headaches get better. We use water, dilute iced tea (wouldn't be my first choice but it is hers), and low-salt chicken or beef broth.
As for the list of suggested "It might not be migraine ask the doctors about this instead" idea, I have made a list. I have, banging around inside my head, my own paranoid and worrisome list. Frankly, it's times like these when it truly, truly stinks to be a doctor.
There's a saying in medicine: "When you hear the sound of thundering hooves, you should picture horses, not zebras." For example, a patient in my office who is coughing is far more likely to have asthma than a lung parasite. That being said, I've had the patient with the lung parasite. Zebras seem to rampage through my office, and we aren't surprised anymore by the occasional pygmy hippopotamus.
My head is full of zebras, a few Tommy gazelles and a river full of hippopotami. Babygirl already possesses one zebra disease. This time I want a horse. Migraine would work for me. That, at least, won't endanger her life any further than the zebra she's already riding.
DeeDee
I'll do my best to cover some ground here.
First, I DO believe in massage, manipulation, chiropractic care and so on. I have had manipulations done while I was having migraines. It worked beautifully. But it didn't stop the headaches from coming back, and it is not a skill a lot of people have. Massage is wonderful, but for me it tends to accentuate an active headache, and it's difficult for me to assess whether it decreases frequency.
With Babygirl, treatments that involve having someone touch her are difficult. As a toddler we discovered that she as some Sensory Integration Dysfunction. She was extremely sensitive to clothing, shoes, socks and so on. I think her current love of skinny jeans stems from the fact that they apply even pressure from her waist to her ankles, no tickly flapping material. She wears fairly tight camisoles under her tops, and I think for the same reason. She is so severely ticklish that CHOP anaesthesia has made note of it. She requires extra sedatives for procedures because touching her belly makes her pull up her knees and giggle, even when heavily sedated. She HATES back rubs, pedicures and shampoos at the hair salon. However effective these treatments might be for her, she cannot, oddly, tolerate them.
Various herbs and natural products have been suggested. Because her anti-rejection medications have many, many interactions with other drugs (and potentially with food, IE grapefruit, and herbs) we have been advised to not allow her to use them. Topical peppermint oil seems to make her worse, while it seems to make me feel better.
Someone suggested sports drinks like Gatorade to help increase potassium. Usually her diet is fairly potassium-rich, and her blood tests always show her potassium levels to be at the higher end of normal. But we are also forbidden to use sports drinks. The salt/sugar/potassium combo is not at all good for people with kidney disease. It is true that hydrating her helps the headaches get better. We use water, dilute iced tea (wouldn't be my first choice but it is hers), and low-salt chicken or beef broth.
As for the list of suggested "It might not be migraine ask the doctors about this instead" idea, I have made a list. I have, banging around inside my head, my own paranoid and worrisome list. Frankly, it's times like these when it truly, truly stinks to be a doctor.
There's a saying in medicine: "When you hear the sound of thundering hooves, you should picture horses, not zebras." For example, a patient in my office who is coughing is far more likely to have asthma than a lung parasite. That being said, I've had the patient with the lung parasite. Zebras seem to rampage through my office, and we aren't surprised anymore by the occasional pygmy hippopotamus.
My head is full of zebras, a few Tommy gazelles and a river full of hippopotami. Babygirl already possesses one zebra disease. This time I want a horse. Migraine would work for me. That, at least, won't endanger her life any further than the zebra she's already riding.
DeeDee
Thursday, November 1, 2012
Week Eighty - Whining....
Babygirl got a lot of loot last night considering she was really only up for about two blocks of candy looting. But the grandbabies came along, and their inability to go the distance spared me the necessity of making her be the one to "give up."
She awoke this morning because her neck hurt. The light hurt, her head hurt, but her neck was the prize winner this time.
The neck pain frightens me. Truly, truly truly scares the bejeepers out of me. No fever, no blood pressure elevation, no other worrisome signs, lots of very well-trained intelligent people thinking that it ISN'T scary, but my gut disagrees.
I don't deal well with fear. I don't cope with helplessness well. I suck at patient watch-and-wait crap. I hate to see her cry because once again she cannot go to school.
This sucker was still hurting her some when I got home from work. She came with me to get some stuff for supper, and had to shade her eyes when the brake lights on the car in front of us came on, because it hurt.
I spent part of my day determining that the headaches may be aggravated by her Rapamune. That would, indeed, stink. I spent most of the rest of my day whining.
It's not pretty.
DeeDee
She awoke this morning because her neck hurt. The light hurt, her head hurt, but her neck was the prize winner this time.
The neck pain frightens me. Truly, truly truly scares the bejeepers out of me. No fever, no blood pressure elevation, no other worrisome signs, lots of very well-trained intelligent people thinking that it ISN'T scary, but my gut disagrees.
I don't deal well with fear. I don't cope with helplessness well. I suck at patient watch-and-wait crap. I hate to see her cry because once again she cannot go to school.
This sucker was still hurting her some when I got home from work. She came with me to get some stuff for supper, and had to shade her eyes when the brake lights on the car in front of us came on, because it hurt.
I spent part of my day determining that the headaches may be aggravated by her Rapamune. That would, indeed, stink. I spent most of the rest of my day whining.
It's not pretty.
DeeDee
Tuesday, October 30, 2012
A Little Delay.......
Frankenstorm was kind to us. A few trees and branches here and there, some wandering trash cans, an entirely new and foreign pile of leaves in the backyard.
But it has had some impact on us. We went to the family doc this morning to follow up on our ER visits. The trip was no problem, a little drizzle but the river wasn't too high and the roads were clear. We discussed the ongoing problem, and even though Babygirl awoke without a headache today, he decided to discuss her case with both neurology and nephrology before moving ahead.
He reached the neurologist on call and was told that oral steroids were okay (YAY! The last thing we wanted to do was to try to set up daily IV's at home). They also recommended a low daily dose of topiramate, a seizure medication commonly used to treat migraine. While in the ER we were told that Depakote was the first choice given all her other issues, so doc decided to speak to nephrology before commiting to a new med.
Turns out, CHOP is running on skeleten staff, outpatient visits cancelled, and no one who knows Babygirl in the office. Thinking about it logically, they were almost dead center of the hurricane and not far inland. When you look out of the upper windows at the hospital, you can see both the Delaware and the Schuykill rivers.
Yeah, it might take a minute to get an expert consensus. We'll start the extra steroids tomorrow.
DeeDee
But it has had some impact on us. We went to the family doc this morning to follow up on our ER visits. The trip was no problem, a little drizzle but the river wasn't too high and the roads were clear. We discussed the ongoing problem, and even though Babygirl awoke without a headache today, he decided to discuss her case with both neurology and nephrology before moving ahead.
He reached the neurologist on call and was told that oral steroids were okay (YAY! The last thing we wanted to do was to try to set up daily IV's at home). They also recommended a low daily dose of topiramate, a seizure medication commonly used to treat migraine. While in the ER we were told that Depakote was the first choice given all her other issues, so doc decided to speak to nephrology before commiting to a new med.
Turns out, CHOP is running on skeleten staff, outpatient visits cancelled, and no one who knows Babygirl in the office. Thinking about it logically, they were almost dead center of the hurricane and not far inland. When you look out of the upper windows at the hospital, you can see both the Delaware and the Schuykill rivers.
Yeah, it might take a minute to get an expert consensus. We'll start the extra steroids tomorrow.
DeeDee
Saturday, October 27, 2012
Headache Update....
Babygirl stayed in school all day yesterday, and had 2 hours of tutoring at home after school. When I asked how her head was, she told me that she'd had a slight headache for most of the school day. She took some Tylenol when she got home and it cleared completely by dinnertime. She wanted me to go Halloween costume hunting with her today, so I asked if she could help with some of my chores so I'd have more time free.
When I woke up in the morning, her chores were all done. Plus, she'd unloaded, reloaded, and re-unloaded the dishwasher, cleaned the stove and kitchen counters, and dusted the living and dining rooms. Like me, the post-migraine state is sometimes accompanied by an energy burst!
She awoke headache free, and has stayed that way all day.
I'll take it.
DeeDee
When I woke up in the morning, her chores were all done. Plus, she'd unloaded, reloaded, and re-unloaded the dishwasher, cleaned the stove and kitchen counters, and dusted the living and dining rooms. Like me, the post-migraine state is sometimes accompanied by an energy burst!
She awoke headache free, and has stayed that way all day.
I'll take it.
DeeDee
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