Just seconds after Jill announced from the bathroom that Alex could squeeze out the toothpaste by himself I hear her announce, “And we have bleeding gums!”

I’ve always been grateful for any toothbrushing that Alex did for himself. They taught him at school, and after an initial shakedown - he had to remember to brush the tops as well as the bottoms - at least it was another task he could handle by himself.

But bleeding gums? My gums bleed sometime during dental cleanings, but I’m 47. Alex is 10.

So now we turn to all those things they say you’re supposed to do and all of us feel guilty for not doing enough. Floss. A Waterpik on the low setting. Elemental teeth care, which in our case will be taught against the wall of sand that is autism.

“Ned,” I say, “listen…” I fill him in the bleeding gums, and point out that Alex will often do things if he sees Ned does them and they seem like fun. Ned agrees, and flies into using the Waterpik; first thing Ned does is spray the mirror.

We’re no strangers to questions about Alex’s dental care. His teeth are yellow (mine have been too, for decades, until White Strips came along). His upper gums seem swollen, his teeth just little buds in the pink. For a while we worried that he was grinding his permanent molars down to the gums, and we wondered if he needed caps.

For a few years we’ve been taking him to one of the few dental clinics available to special-needs kids in New York. Good place, except every time we went we found a new dentist waiting for us. All nice dentists, who all said Alex was a pretty good patient in the chair (when somebody screams, it’s easy to see their teeth…), and that no, he wasn’t grinding his teeth and yes, he did have a small cavity but it was in a baby tooth he’d likely soon lose anyway.

Bleeding gums. Alex watches Ned spray the mirror, standing there laughing with me sitting on the toilet and hugging him as if he were about three. Alex giggles into his hands, which he holds over his mouth. In the grocery store, I walk Alex by the toothpaste aisle, hoping to find Elmo Dental Floss (Do they make such a thing? They should.) “Alex, this is floss,” I say.

I think we can do this. My first Waterpikking with him goes well: He laughs as the gentle spray hits the swollen pink. I teach him to brush at 45 degrees. All the stuff we feel guilty about not doing. But there’s a world of difference between feeling guilty about not doing something for yourself and not doing it for Alex.

Primer on pediatric dental care for children with autism: http://dentalresource.org/topic55autistic.html

(Image: sxc.hu)

I know that when Aunt Julie (aka my sister) reads this, she’s going to say, “You want to WHAT? You want to inject your son with PARASITES?” Very important to read the all-cap words with just the right amount of amazement.

One day, I’m sure, they’ll have some more answers to autism’s causes and effective treatments. Right now, thought, it’s like we’re all bumping into each other in the same dark room, looking for the door to get out. Every now and then someone says, “Try the gluten-free, casein-free diet!” And you think, “Nah, that just doesn’t seem right to me.” And you’ve read from people who seem reliable and sensible to you that it’s not effective.

Then you bump into someone who says, “Helminthic therapy worked wonders for my son!” And you think, hmmm, didn’t I read something somewhere about worms being used to treat autoimmune diseases like MS and lupus? And then this turns up in your inbox (see the description for May 14), so you do a little digging and watch this video, which definitely reminds you of all the times your son has had a fever, and he acted (how to put this nicely?), well, less autistic.

Why does this unproven, unapproved, and untested therapy seem so appealing to me? (We’re not going to do it, because my favorite way to research something — quickly glance at a few web sites before moving onto items I bookmarked on eBay — indicates you have to buy worms from Thailand for thousands of dollars. THAT doesn’t make sense to me.

What does make sense is a hodgepodge of facts and figures. Not everything old is bad: look how leeches made their great comeback after being discredited for centuries. Now they’re used in microsurgery and reconstructive surgery.

Who remembers Phisohex? When I was a kid, mothers who wanted to be hypervigilant bought it and made their kids wash their hands with it. (Not my mother. She felt soap was perfectly fine.) I loved that acid green plastic bottle it came in. It smelled like the future: ultra clean, faintly plastic. Then all these reports started coming in about damage to newborn babies, who used to get bathed in it in hospitals, and Phisohex (aka hexacloraphene) was taken off the market. (It’s still available as a prescription.)

Recently I’ve heard about the low incidence of inflammatory bowel disease among children who grow up on farms and how vitamin D supplements may worsen autoimmune disease, another instance of thinking you can raise your level (when it’s low because of a disease) and then finding out this is actually counterproductive.

It would be embarrassing to admit I don’t really have a point. We’re not going to do helminthic therapy with Alex, but I wish we could. When I think of those farm kids growing up and never having Crohn’s Disease, when I think of leeches helping newly reattached limbs, it only makes me realize how very poorly understood many conditions are.  (It also makes me think of Mose, Dwight Schrute’s cousin on The Office, who makes infrequent appearances and seems sort of autistic to us. If all this is true, he’s an even more improbable character, since farm children grow up healthier than city children, if they’re not exposed to pesticides or dangerous farm-equipment-related accidents.)

We are still looking for the door. We’d even settle for being nearer the exit.

I wouldn’t give Alex just anything that dissolved in water, despite how Jill chose to put it. But soon after we (mostly Jill) broke the glass ceiling of Alex drinking medicine from a little metal cup a few years ago, I began to wonder what supplements he might take.

The trend started with melatonin and continued with his Topamax. He takes also nothing that I don’t take, and not much of that. (The exception is folic acid and multivitamins, which I heard from Dr. Internet were bad for men older than 45.)

Image: Nassaulibrary.org

Alex’s schedule includes one tablespoon of liquid Vitamin Shoppe children’s multivitamin every morning. Then I give him stuff alphabetically, the only way I can keep it straight, two a day, starting with one teaspoon of children’s acidophilus and one teaspoon Benefiber, both dissolved in water. (Benefiber since he stopped drinking V8 juice months back).

The next day: one B12 capsule and one cinnamon capsule, both dissolved in separate metal cups of water. Day three: one folic acid tablet and one ginseng capsule, both in water. Day four: one selenium tablet and one potassium tablet, in water. Next day: schedule starts again.

Alex’s health regimen is much like mine: Not enough of anything to harm, and delivered because somebody said it helped. The recommendation for acidophilus from the head of a local autism support group; B12’s from an autism dad and AutismOne radio host, who said that in moderate amounts it improved speech; and selenium from Jill, who told me it was good for preventing cancer. I figure his diet is so crappy, the odds of him getting too much of any nutrient are pretty long.

I’d love to add fish oil and magnesium, (heard good things), but they don’t dissolve in water.

More on supplements and autism.

Author Paul Collins (Not Even Wrong) has a great piece in the recent Cookie magazine. Collins, whose son is autistic, advises prospective hosts (parents of the typically developing, most likely) on what to expect and now to prepare if someone’s bring an autistic kid to their house. Interesting perspective and smart piece.

Jeff is talking about supplements, of which Alex gets several. Potassium, B12 vitamins, plain old ground cinnamon (he buys these in expensive capsules that he breaks open and dissolves), selenium. I really don’t know where he gets his information. Oh, that’s right, that big old database called the world wide intertubes, which is so known for the reliability of its content. (Confession: I take turmeric capsules because I read somewhere that it was a good anti-inflammatory that could offer protection against heart disease and other conditions.)

“If it dissolves in water and I can get it at the Vitamin Shoppe,” Jeff says, “I’ll give it to him!”

I know why he does it. Alex’s diet (Hebrew National franks and Utz Extra Dark Specials and Pepperidge Farm Goldfish) is so terrible we worry if he gets even a half of what he needs. While lots of kids with autism are on dairy-free diets, we are thrilled that Alex now drinks milk and eats yogurt (but only Dannon La Creme strawberry or vanilla). At least he’s getting calcium.

Then there’s the murky evidence that some of these things will actually help him neurologically. We’ve checked with Alex’s pediatrician, and at the doses he’s getting, they’re not doing any harm and might be doing some good.

But I think the real reason he does it is that a parent with a child who has problems wants to feel he is doing everything possible to help. Can’t argue with that.

I spoke on Friday morning to a group of family-practice residents. Their faces seemed impossibly young, like early spring flowers, as I rattled off some of the gems that doctors said to Jill and me 11 years ago:

“I’ve seen kids get this and get over it, and I’ve seen kids get this and not get over it … The aggressive questioning by you and your wife during Alex’s time under our care altered the course of his treatment to his detriment … I just don’t want you to think you’re ever going to have a normal baby.”

Mentioned too were our positive doc moments: the pulmonologist who held Jill’s hand; the resident who stroked Alex’s tiny head and kept saying “We’re sorry” as he drew blood; the smiling doc with the button that read, with refreshing honesty, “Not always right, never in doubt”).

Autism had yet to really rear its head in Alex or in our lives when these events happened, but, to paraphrase E.B. White, the same wind can blow across vast expanses of medicine, including family medicine when confronted with autism. Perhaps you can see one of your doctors in these comments:

“The family member speaking was amazing. I would just like a little more information about how to manage my own feelings.”

“I learned how critical it is to express things in a sensitive manner, as it relates to discussing bad news.”

“Especially helpful was the positive experience of the parent. Least helpful was that it was a general put-down of docs.”

Sorry he took it that way - I’m as sorry, at least, as that “detriment” doc probably was. Actually, I am sorry. That resident was there to at least try to understand the parents’ views, what it’s like to be on receiving end of bad medical news.

Alex’s experiences - and hence mine and Jill’s, too - with the medical world haven’t been bad in the past five years or so. When Alex fell off the bed and cracked his head open last year (also refreshing in its stupid-kid normalcy), we had to lug him to the same hospital where we’d once been accused of aggressive questioning. They could not have been sweeter this time around.

Disturbing to think how visits to hospitals can resemble visits to big retail stores: Your whole experience often depends on what register you pick.

I applaud those young residents very much, by the way.

For more on communicating with doctors, check anapsid.org and ucsfhealth.org, among others.

“Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities”—-these are noted in one of the DSM-IV criteria for Autism Spectrum Disorder. A study published in the December 10th Neuron has found that reducing the activity of the gene FKBP12 in the brains of mice affected their synapses, and increased obsessive behavior and “fearful memory.” As noted in today’s Science Daily:

The protein FKBP12 regulates several important cell signaling pathways, and decreasing its activity enhances long-term potentiation in the hippocampus, said Dr. Susan Hamilton, chair of molecular physiology and biophysics at [Baylow College of Medicine] and a senior author of the report. (Long-term potentiation means the enhancement of the synapse or communication between neurons.)

It accomplishes this by fine-tuning a particular pathway called mTOR signaling (mammalian target of rapamycin). The mice in whose brains the activity of the gene was reduced had longer memories and were more likely to exhibit repetitive behaviors than normal mice.

Researchers suggest that their findings might lead to the develop of drugs for autism and also for obsessive compulsive disorders.

Although—-what about the use of such repetitive actions to calm and self-soothe?

Experimental drugs that are said to “correct” symptoms of Fragile X, Rett Syndrome, and tuberous sclerosis complex are now in early-stage human trials, the MIT Technology Review reports. The drugs reduce the activity of a receptor called metabotropic glutamate receptor 5, or mGluR5, and have previously been tested on mice, as reported in the June 25-29 issue of the Proceedings of the National Academy of Science. From the MIT Technology Review:

People with fragile X, the most common form of heritable mental retardation and a leading cause of autism, have a mutation in the FMRP gene, which normally inhibits protein synthesis stimulated by a receptor called metabotropic glutamate receptor 5, or mGluR5.

Last year, [lead researcher and MIT neuroscientist Mark Bear] and Gul Dolen, also at MIT, announced that they could correct abnormal brain development and faulty memory and reduce seizures in affected mice by decreasing mGluR5 activity by 50 percent. “The idea that you could reintroduce function is a sea-change event,” said Emanuel DiCicco-Bloom, a neuroscientist and physician at the University of Medicine and Dentistry of New Jersey, at the neuroscience conference.

Bear has founded a company, Seaside Therapeutics, at which human trials of one of the drugs are now underway. He also says:

“We may have our finger on a biochemical pathway that is applicable more generally in autism.”

More about the STX107, the “lead drug canditate, can be found at the Seaside Therapeutics website.

The UC Davis-M.I.N.D. Institute’s MARBLES study ( Markers of Autism Risk in Babies’ Learning Early Signs) is following some 100 women who have a biological autistic child and who are pregnant, or who are planning on becoming pregnant, to investigate possible biological and environmental agents that children are exposed to prenatally and post-partum. It seems that maternal health during pregnancy—what expecting mothers do or do not do—will remain an area of scrutiny in the search for autism’s causes: A study published in the December Neurology shows that children whose mothers took Epilim, an anti-epileptic drug, during pregnancy were seven times more likely to develop autism, as compared with children whose mothers did not take such a drug, as reported in Reuters. Epilim is known generically as Valproate and is sold as Depakene in the US. Previous studies have reported an association between fetal valproate syndrome and autism.

One of the main concerns that people raise in regard to giving medication to autistic children, and to children more generally, is that there’s a lack of information about the long-term effects of the medication on a child. According to a new study by researchers from the National Institutes of Health (NIH) and Duke University Medical Center, two medications commonly prescribed for treating ADHD—methylphenidate and amphetamine—do not cause chromosomal damage in children. (My son briefly—very briefly—took Ritalin; while taking it, he became so focused that he became extremely anxious, lost his appetite and looked—this is the best word—skittish; we discontinued the medication after less than a week.)

From Science Daily:

The current study included 63 children, ranging from 6-12 years of age, who met full criteria for ADHD but who had not previously been treated with stimulant medications. Children in the study were divided into two groups and treated by a board-certified child psychiatrist with either methylphenidate (commercially available as Ritalin LA and Concerta) or with mixed amphetamine salts (Adderall and Adderall XR). Blood samples were taken before the medication was started to establish baseline values for the cytogenetic [chromosomal] measures that were analyzed in the study, and a second sample was collected after three months of continuous treatment. Forty-seven children completed the full three-month treatment schedule.

The researchers found no significant differences between the two groups of children with regard to age, gender, race, body weight, height, or ADHD subtype. The groups also showed very similar ADHD symptom levels at initial screening and children in both groups responded equally well to the medication.

The researchers looked at three standard indicators of chromosomal damage: structural chromosomal aberrations (breaks in chromosomes), micronuclei (small nuclei consisting of chromosome fragments produced by breakage or whole chromosomes lost from the main nucleus after the cell divides), and sister chromatid exchanges (exchanges of genetic material between a pair of identical chromosomes)

The study, researchers noted, is not to be taken as the final word on the long-term safety of using stimulant medications for treating ADHD in children. It is published in the Journal of the American Academy of Child and Adolescent Psychiatry (JAACAP).

More than 389,000 children and teenagers were treated with Risperdal—an atypical antipsychotic—last year. And, 240,000 of them were 12 years old or younger, the November 18th New York Times reports. A panel of federal drug experts stated that medications like Risperdal are ” being used far too cavalierly in children” and that “federal drug regulators must do more to warn doctors of their substantial risks.”

Risperdal has been approved for treating irritability in autistic children. The New York Times notes that “in many cases, the drug was prescribed to treat attention deficit disorders,” for which it has not been approved for:

The meeting on Tuesday was scheduled to be a routine review of the pediatric safety of Risperdal and Zyprexa, popular antipsychotic medicines made, respectively, by Johnson & Johnson and Eli Lilly & Company. Food and Drug Administration officials proposed that the committee endorse the agency’s routine monitoring of the safety of the medicines in children and support its previous efforts to highlight the drugs’ risks.

But committee members unanimously rejected the agency’s proposals, saying that far more needed to be done to discourage the medicines’ growing use in children, particularly to treat conditions for which the medicines have not been approved.

“The data show there is a substantial amount of prescribing for attention deficit disorder, and I wonder if we have given enough weight to the adverse-event profile of the drug in light of this,” Dr. Daniel Notterman, a senior health policy analyst at Princeton University and a panel member, said when speaking about Risperdal.

The side effects of Risperdal are serious and include substantial weight gain, metabolic disorders, tardive dyskinesia and dystonia.

My son’s among those 389,000 children, and among those 240,000 children aged 12 and younger, who are taking Risperdal. He’s been taking Risperdal since the spring of 2004, at a time when his self-injurious behavior—head-banging—-was severe and he was on the verge of being removed from a public school special education classroom to an out-of-district placement. This is a more detailed account of what Charlie’s experience on Risperdal has been. The most difficult side effect has been the substantial increase in his appetite and the resulting wet gain; we’ve sought to address this by watching Charlie’s diet (and minimizing junk food, in particular) and by making sure he gets a lot of exercise.

I really didn’t want to put Charlie on medication. And truly, it’s not the “answer” in and of itself for addressing aggressive or “problem behaviors.” Even as he wrote the first prescription for Risperdal for Charlie, our pediatric neurologist told us sternly that Charlie also had to have behavior therapy; that we had to keep his education in mind first.

Charlie was 7 1/2 when he started taking Risperdal — since then, mostly via this post, I’ve heard of younger and younger children being prescribed Risperdal. The federal panel’s concern seems very much justified. The New York Times notes a few more reasons why, including the rise of the diagnosis of bipolar disorder in children; however:

The leading advocate for the bipolar diagnosis is Dr. Joseph Biederman, a child psychiatrist at Harvard University whose work is under a cloud after a Congressional investigation revealed that he had failed to report to his university at least $1.4 million in outside income from the makers of antipsychotic medicines.

In the past year, Risperdal prescriptions to patients 17 and younger increased 10 percent, while prescriptions among adults declined 5 percent. Most of the pediatric prescriptions were written by psychiatrists.

From 1993 through the first three months of 2008, 1,207 children given Risperdal suffered serious problems, including 31 who died. Among the deaths was a 9-year-old with attention deficit problems who suffered a fatal stroke 12 days after starting therapy with Risperdal.

At least 11 of the deaths were children whose treatment with Risperdal was unapproved by the F.D.A. Once the agency approves a medicine for a particular condition, doctors are free to prescribe it for other problems.

Panel members said they had for years been concerned about the effects of Risperdal and similar medicines, but F.D.A. officials said no studies had been done to test the drugs’ long-term safety.

No studies done to test the drugs’ long-term safety: It’s a phrase that keeps ringing in my ears; in any parents’ ears. Charlie can’t tell us how he feels taking the medications so it’s up to us and Charlie’s teachers to watch and observe, to adjust and alter. And to know that, medications can help, but they’re just on part of the picture, and a part that needs to be kept under very careful scrutiny.