Strollerderby : diagnosis

Navigating Infertility With An Authority

Amy Kuras — Wed, 13 May 2009 16:30:00 GMT

Infertility can be one of the more bewildering things to happen to a person. Everybody else around you has babies as easily as sneezing, it seems. Meanwhile you do what needs to be done, month after disappointing month, and nothing.

After a certain point, you begin to realize that maybe there’s something wrong. And its at that point where things really get confusing. You get thrown into an alphabet soup of tests and treatments – what’s an HSG? Is it different from HCG? Why is this so hard and why does it cost so much?

There’s plenty out there online that can help you navigate, but certainly for me a few years ago, it tended toward the emotionally supportive, which was good, and the chirpy (“baby dust”, anyone? Gah), which was bad. And then there were the infertility blogs which were fabulous but often much further along in the process than I got. Finding an impartial source with clear, simple information was hard, actually pretty much impossible for me.

Now, there’s a fairly new site that seems like what I needed way back then. Fertility Authority has short, simple descriptions of all of the tests, treatments and issues that face you when you’re dealing with infertility, with links to more info if you need it. There's a "celebrity" connection -- Alexis Stewart, daughter of Martha, is invovled with the site. There are blogs from various people dealing with infertility and the site editors as well.

If you’re facing down infertility – or know someone who is, give the site a look.

Bipolar Disorder: A Family Secret

Hannah Tennant-Moore — Sat, 13 Sep 2008 20:55:00 GMT

What would you do if your 10-year-old daughter said to you, “I can’t take it anymore. I don’t want to be me. I don’t want to feel anymore. Why aren’t you doing anything about this?” Or if your normally loving son threatened to slit you open with a knife? Naturally, you would want to do anything in your power to make your children better, but what if that meant giving your six-year-old lithium? Or sending your 10-year-old away to a therapeutic residential school?

In deference to the many parents who face these challenges day after day, I highly recommend Jennifer Egan’s piece on bipolar disorder in children. She traces several families’ struggles to cope with children who rage against the world from the time that they can talk, and offers a comprehensive portrait of the uncertainties surrounding bipolar diagnoses in kids.

Until relatively recently, it was believed that bipolar disorder only affected adults. Now nearly all leading child psychiatry experts agree that children can suffer from the disease—but they mostly all disagree about how to diagnose childhood bipolar disorder. Most experts believe that it is over-diagnosed, in part because managed care usually only pays for one brief psychiatric evaluation a year and because of the highly questionable yet widely popular book The Bipolar Child.

Diagnosing mental health problems in children is further complicated by the fact that many of the symptoms of bipolar disorder overlap with the symptoms of ADHD (Attention Deficit Hyperactivity Disorder). And mania is not as clear-cut in children as in it adults--it's often normal for children to act grandiose or have terrible temper tantrums.

James, one of the kids Egan writes about, was diagnosed with ADHD, OHD (Oppositional Defiant Disorder), and bipolar disorder by the time he was eight. With so much uncertainty about the disease, even parents whose children have seemingly clear-cut episodes of mania—stealing strangers’ cell phones or wearing outlandish clothing—followed by clear episodes of depression remain uncertain about their children’s treatment.

Once a child is diagnosed with bipolar disorder, he and she is prescribed strong medication with harsh side effects. Making the decision to give such drugs to kids is a huge weight of responsibility on a parent’s shoulder—and this decision requires trusting a doctor whose personal biases will inevitably influence her diagnosis and prescribed treatment.

At the very least, I hope that Egan's article will bring greater awareness to this issue. As one of the mothers interviewed said of her son's horrible temper tantrums, "It's like a dirty little secret. It's like having a husband who beats you, only it's a kid. It's your own."

Image: New York Times

Pediatricians Group: Screen Early and Often for Autism

Madeline Holler — Tue, 30 Oct 2007 12:24:00 GMT

There’s no cure for autism, but those with firsthand experience say early therapy can lessen the severity of this disorder. With that in mind, the American Academy of Pediatrics has come out with a strong recommendation that all children be screened twice for autism by the age of two.

For parents, this means the doctor will ask at well baby checkups whether their 4-month-old smiles at the sound of her parents’ voices, and if their 9-month-olds babble, or their 1-year-olds point to toys. They may even ask whether your young one responds to his own name.

Of course, the AAP says to temper your panic if the answer to any of these is "no." These are just signs that may hint at more focused testing.

Want to know what autism looks like? You can watch video clips of autistic kids contrasted with unaffected children’s behavior at a website, which is sponsored by Autism Speaks and First Signs. The two groups want to promote early diagnonis and treatment.

New reports also say children with suspected autism should begin treatment even before being formally diagnosed. Also, these reports warn parents about the special diets and alternative treatments endorsed by celebrities, saying there's no proof those work. (I think they’re talking to you, Mr. Travolta).

Experts say one in 150 U.S. children have some form of autism. Pediatrician awareness and early testing might make parents who know from autism feel less responsible for diagnosing others.

Congresswoman's Baby Has Down Syndrome

Karen Murphy — Thu, 31 May 2007 23:35:00 GMT

Dear U.S. Rep. Cathy McMorris Rodgers,

I read recently that your new baby has been diagnosed with Down syndrome. Believe me, I can completely relate; my son Eric is now three and it wasn't long ago that I began the same journey of grief and acceptance that you are beginning. (This is him in the photo; isn't he beautiful?) I have a few words of advice for you.

First, don't listen to anyone else. That's right, not even me. Only you know best what's right for your child. There are plenty of "experts" out there who will be more than happy to tell you what your son Cole's life will look like. Don't believe them. Right now, his possibilities are endless. Know that, truly believe that, and they will be so.

Next, listen to anyone you can (you're saying "huh?" right about now, I can tell). There is an enormous amount of information out there. Learn to take it in small-enough doses so that you can sift through it intelligently. Join parenting support groups, online support groups. Acquaint yourself with the Down syndrome culture out there. Realize what wonderful, beautiful, amazing things that other kids with Down syndrome are doing and what their parents are doing to help them get there. I guarantee you'll be surprised. Look, too, at the number of adults with Down syndrome you suddenly see in surprising places. Try to see Cole's life through their eyes.

Third, this baby is here to teach you something. There is not a person with Down syndrome I have ever run across who doesn't seem to be on a mission of some sort, if only to spread love and joy or simply acceptance around them. Not a bad calling, if you ask me.

Lastly, allow yourself to really grieve for the child you didn't have. We all go through this, and it's okay. A dream died when you were told who Cole really is, and you should allow that death to settle. And then look into his beautiful eyes and really say hello to your tiny son. Then you can see him for who he is.

Hugs,

A mama who's been there

P.S. I forgot to mention: with your visibility and your political knowhow, maybe you could help make a difference for other kids with Down syndrome too.