Monday, January 24, 2011

Medication trials and tribulations

FroggerImage via WikipediaWell, last school year, it became readily apparent to us that Something Was Wrong.  Our daughter, who I think is quite bright (of course I'm biased, but it's true!), was struggling immensely in school.  After a battery of tests with the school psychologist and a visit to the doctor with all the results, the diagnosis was confirmed--she had ADD and ADHD.

This did not surprise me, because Trusty Hubby has the attention span of a dead flea, God bless him, and probably has ADD himself, and there is a genetic component to ADD/ADHD.  He loses his keys and wallet on a semi-regular basis, leaves the car headlights on often enough that the security guy at work who jumps his car now knows him by his first name, and he has 18,443,586 unfinished projects sitting on the workbench, because he can never find the screwdriver that he left on the bathroom sink.  I don't ask why it's on the bathroom sink, I don't want to know.  I just put it away in the kitchen junk drawer so _I_ know where it is in the future when he asks _me_ where he left his tools.

Anyway, we had tried a number of things with our daughter that are normally recommended for people with mild ADHD--quiet room for studying, keep distractions to a minimum, get lots of physical activity, make sure to get regular meals with lots of protein, avoid sugar (your mileage may vary on that one--I don't care what the studies say, sugar makes our daughter more hyper), and so on.  All of these things helped some, but not enough.  The doctor suggested two things--a radical diet, and/or medication.  Our daughter has multiple food allergies, and so the diet would have been an extreme challenge for us in terms of protein intake, not to mention just plain hard to work with.  It didn't help that at the time we finally got the medication going, we were also dealing with my sister having stage 4a cancer, my sister-in-law having stage 2 cancer, and me looking at a knee replacement.  Honestly, medication was the easier of the two to deal with at that point--I was simply out of physical and emotional resources to deal with the drastic changes that the special diet for ADHD posed.

And you know what? Admitting that is OK. You have to be honest with yourself and examine your life and home situation before embarking on something that creates major changes in your life.  If you try the special diet and it works, great! If diet doesn't work and you utilize medication to treat ADD/ADHD and it works? Great!  If you decide that your life is too insane for the diet and you don't even want to try it and medication works? Great!

Here's the thing--medications are oftentimes just purified forms of natural substances, and a lot of people forget that. 

Our doctor is really cool about communication.  She also starts with the smallest dose of medication and works up to a working dose.  This is because what works for one kid does not always work for another.  ADHD medication is like that.  There is a lot of science behind it, yes, but there's a tremendous amount of medical art in managing medications types and dosages for this condition.  This has good and bad implications.  The good: there's less chance of side effects when you start low and work your way up--fewer headaches, less chance for heart rate and blood pressure changes, less risk of weight loss, less chance of being overdosed and turning into a zombie, and so on.  The bad: when the dose is almost, but not quite enough, to do the job, you have to peel your kid and/or you off the ceiling, because it makes the symptoms approximately a zillion times worse.  The first week of medication for my daughter was Not Pretty.  I put myself in 'time out' as much as I put my daughter in time out that week, mostly so neither of us ended up in jail for homicide charges.  The doctor wisely decided that this dosage was not quite high enough.

The next dosage worked OK, the third dose up worked even better, though when it wore off around 4pm, you could tell that my daughter had hit the wall and crashed hard.  We debated adding a short acting pill when she got home or switching to the Daytrana patch.  We elected to go with the Daytrana patch.  This turned out to work really well--there were no 'highs' and 'lows' with it, since it's a more steady release--unless my daughter took off the patch at school, which I suspect happened with more frequency than she reported.  We ended up settling on the 20mg dose over summer, and that worked quite well.

When she started school in the fall, though, we discovered it wasn't working quite as well as we'd hoped.  She got the highest grades she'd gotten in quite some time, however, so we knew it was helping just the same.  We decided to try the 30mg dose.  In retrospect, that probably was too high for her.  It got rid of the hyperactivity, but turned her into a bit of a zombie at school, as we discovered when we took her off the medication for hair loss.

So let's talk about the hair loss.  In mid-December, I initially thought when I saw large patches of her hair thinning out in dramatic fashion after being on the new dose a few weeks that it was the medication.  I looked it up in the online PDR, and alopecia was indeed a reported side effect, but in such a small amount that they didn't even have a percentage.  After talking to the doctor again, we found out it was more likely the result of the higher dose of Daytrana causing anxiety, which was causing her to twist her hair and pull on it. The doctor also checked her thyroid to make sure it wasn't that (normal, happily), and referred us to the dermatologist to see if something funky was going on.  Since she was losing hair at an alarming rate, and it was Christmas vacation, Trusty Hubby and I decided to give her a medication break and see what happened while we awaited the dermatology appointment.  We learned her first week back at school, off the medication, that 'she was a very different student' according to the teacher, and was much perkier and participated a lot more.  However, we also learned that the ADHD was making it impossible for her to focus on her homework at home long enough to get it done.  Assignments that she could normally get done in 5 or 10 minutes now took her 4 hours (that is no exaggeration!), and that was IF Trusty Hubby or I stayed in the kitchen with her to keep her on task.  That wasn't going to work.

So, I called the doctor again and suggested we try something else. The doctor agreed and suggested Vyvance along with a daily hair count to make sure the med wasn't causing her hair to fall out.  She also thought we might end up having to see a pediatric psychiatrist since she leaned towards anxiety as the cause of hair loss.  I could understand that.  The dermatologist assured us that the medication was not a direct cause of the hair loss, but thought it was possibly an iron or protein deficiency (given her weight loss on the higher dose) or anxiety-induced hair pulling.  So, we got the blood test done.  I noticed her twisting her hair a lot, too, and given her behavior in school on the high Daytrana dose, figured Vyvance was worth a try to see if the different chemical configuration would eliminate or reduce the side effects.  A friend suggested some bracelets that she could wear to keep her fingers busy, too.  We picked up the new prescription and found some bracelets that she liked.  She now fingers those a lot, which helps keep her hands out of her hair. 

When the doctor said we were going to start the Vyvance at the lowest dose, I groaned inwardly, remembering her first week of medication and how I felt like I was one of those splattened toads on the old Frogger video game.  However, I've learned that years of medical practice gives one a wisdom in treating patients that one can't learn in books or journal articles.  Not that I had much choice, mind you, but I went with her wisdom on that, and picked up the low dose. 

It's working beautifully.

The only problem we're having now is that when it wears off, she's really grouchy.  We discovered part of that is plain old hunger, so now we make sure she gets a good solid snack after school.  This is something for other parents to keep in mind, too.  If your kid is crashing emotionally around 4 or 5 pm, try feeding them some protein-rich foods when they get home from school.  It might just get you over the hump and prevent the emotional outbursts.

Her hair is growing back, too, and so far, the hair counts are normal. This just might work for us.
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