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Reflections on a course of Accutane

The other night I watched my 17-year old daughter Maddy perform with her cousin at her school talent show. They performed the Johnny Flynn song The Water.  They were exquisite — perfectly in tune, voices seamlessly blending, looking flawless as the stage light shone on their attractive faces.

And ironically, sitting right in front of me was Maddy's dermatologist, there to watch his son perform. And I thought: I owe this moment to him and the drug Accutane.

Six months ago there is no way Maddy would have been up on that stage.

Writing about one's teenage children is sensitive ground — particularly about their struggles, in Maddy's case her struggle with acne. But Maddy and I have talked about this column and I am writing it with her permission and approval. "I think other teens and their parents should know what we went through," she said. "It might help them make their decisions." (Plus she added: "And none of my friends read your blog, so I don't really care.")

I swear we did not make the decision to go on Accutane — Isotretinoin — lightly. It is a very powerful drug — some would say toxic drug — with the potential for serious side effects. It is hard on the liver, bones and gut. Lawsuits have linked it to depression, rages and suicide as well as Crohn's disease. If you went by what is prominently found on the Internet, you might never consider it at all. And that is one reason why I write this — to give a balanced version to those trying to decide.

By last fall we had tried everything to control her acne.

Maddy's acne story was typical. She first started having breakouts in Grade 8, around age 12. At first Proactive worked. Then we moved to topical prescription antibiotics (Clindasol) with a Rx drying agent (Differin). The doctor by the end of Grade 9 added oral antibiotics — Minocycline starting at 50 mg and rising to 150 mg daily. She was on antibiotics for more than 18 months, a long time and daily antibiotics can have very serious rare side effects, which fortunately Maddy never got. She also took Alesse for hormonal regulation. That complex mix of Rx lotions and pills worked fairly well until the spring of Grade 11.

Then it all stopped working. We had numerous trips to the doctor to try to adjust medications. While diet has longed been deemed unrelated to acne, we still stressed healthy eating and good sleep. I read in recent medical literature that a statistically significant link had emerged between heavier consumption of dairy products to kids with more severe acne. Maddy cut back on dairy to no avail. We tried health food supplements called `Perfect Skin` and other concoctions touted to naturally cure acne. All useless. We even bought a very expensive hand-held infrared light device, recommended in some studies, for which she need to wear special eye-protecting goggles. All it did was burn her face, making it bright red and painful. Her skin was inflamed with acne and scarring. She was miserable.

"There were days where I did not want to get out of bed," recalls Maddy, particularly of last September and October.

I had been avoiding Accutane for months. I had read in the blogosphere about alleged links to Crohn's and suicide. Maddy had read about a risk of losing her hair, another one of its reported side effects. We read a lot of scary stuff on the Internet. But in hindsight, perhaps we would have considered it sooner.  I know some Moms who refuse to allow their teens to go on Accutane but I now feel it is reasonable choice when you have tried all options. And that is why I am revealing some private details to tell the story. As a journalist I feel almost a duty to report our experience -- I always ask others to tell their personal stories to me. Now it is our turn. Maddy agrees with me.

When I finally decided we had to at least talk to the dermatologist about its pros and cons, I got an appointment date of almost three months hence. But I phoned them in desperation "I know you have cancers you are dealing with, " I said, "But I have a teenager who won't come out of her room, who is refusing to go to school. We must get in on the first cancellation."

We were in that week. The doctor examined her and said: "You are the perfect candidate for Accutane."

I voiced my fears, citing various studies. "Don't worry Mom," he said. "I have been using this for 30 years. We will follow her. By the time five months are done, she will likely never have another pimple in her life."

Maddy was sent for a blood test for liver function and when it was clear, she started the pills a week later. She had another set of blood tests a month later and when those, too, showed her liver was tolerating the drug, her dose was increased.

Like about 30 to 40 % of users, Maddy's skin got worse in the first two months. This was tremendously hard. I believe — and recent medical literature has proven this true — the links to depression on Accutane are for those kids who worsen upon starting it. Says Maddy, "You have tried everything and you have all your hopes riding on it — and it makes you feel terrible and still you get worse. That was not fun."

"Hang in there," said the dermatologist. "This is normal."

The drying side effects were tough. Her lips were constantly dry and cracked — but vaseline and Elizabeth Arden's 8-Hour Lip Protectant helped. She had nose bleeds almost every morning during the winter. In week six, she suddenly developed back pain that was so severe that I called the doctor's cellphone on the weekend.  He checked her out Monday morning. "Ease up on her gym class and workouts until the pain goes away," he said.

Her eyes got dry, red and scratchy. Visine worked for that. She developed patches of eczema on her legs and arms, treated with copious amounts of vaseline and 1% hydrocortisone. She couldn't drink alcohol on it and we stressed to her the danger to her liver if she did. "I know Mom, I am not like that," she said. But for some kids it could be a serious risk.

There was one unexpected benefit: instead of losing any hair, it thickened, and she only need to wash it once a week. "I actually loved my hair on Accutane," she said.

We decided, that if she got sick or developed food poisoning or a stomach flu, we would temporarily halt the pills until she got better. There is not a lot of medical evidence for this action but I figured it was such a strong drug that we would not add it to her system if her gut was at all compromised. There is evidence that inflammatory bowel disease can be first triggered by an intestinal infection alone. I reasoned, why add Accutane to the mix? But we never need to temporarily halt the drugs.

By the third month we started to notice an improvement. By the final, fifth month, her skin was clear, the results almost astonishing considering where she started. Now, about six weeks after taking the last pill, she hasn't had a pimple since early March. Her skin now looks almost flawless.

"I was really scared to go on it, but I am glad I did," she says.

We acknowledge that it is not for everyone. That you must investigate all options. You must have liver function tests and have a good dermatologist who sees you monthly.

But even Maddy agrees: "There is no way in the world I would have been up on that stage without it."

And when the concert was over and we were trouping out I smiled at her dermatologist and said, "Thank you."

Posted on Monday, May 30, 2011 at 11:08PM by Registered CommenterAnne | CommentsPost a Comment

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