Tuesday, October 23, 2007

Strep Throat is Different For My Kids

Over the years, I've come to rely on the fact that my son responds differently to germs. My son has tested positive a couple of times for strep, but he only had one symptom, a minor sore throat with minor redness. No fever, no aches, energy normal. My pediatrician thinks differently, but whatever, and I move on.

Years ago I had read about a new emerging disorder called PANDAS in a couple of the autism books, but never paid too much attention to them because my son never presented with tics. Nor did he seem to ever get strep throat. Boy was I wrong. Thanks to our nutritionist, I have revisited this disorder, called PANDAS. I believe both my children have this - their presentation doesn't fit to a tee, but it's the closet explanation yet to what is happening to my children.

In a nutshell, a strep infection attacks the central nervous system, causing OCD and tics among other things. The majority of children today are believed to have strep in their system during an outbreak, but are symptom-free. Until recently, this was the case for my kids, although my daughter has had occasional blinking episodes for the last couple of years. I've always chalked this up to seasonal allergies.

Strep has broken out in their school this fall, many kids have been absent. At the same time, my son and daughter both got tics. In addition, my daughter got very emotional and clingy. True, we could attach this to numerous other reasons, but it totally matches with the timing.

Below are numerous links. I highly recommend any parent with a child with an ASD or ADD/ADHD to review this information, in the interest of making informed health care choices. This has been going on for over 10 years.

Here's a general discription taken from an NIH website:

PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children who have Obsessive Compulsive Disorder (OCD) and/or tic disorders such as Tourette's Syndrome, and in whom symptoms worsen following strep. infections such as "Strep throat" and Scarlet Fever.

The children usually have dramatic, "overnight" onset of symptoms, including motor or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable or show concerns about separating from parents or loved ones. This abrupt onset is generally preceeded by a Strep. throat infection.

What is the mechanism behind this phenomenon? At present, it is unknown but researchers at the NIMH are pursuing a theory that the mechanism is similar to that of Rheumatic Fever, an autoimmune disorder triggered by strep. throat infections. In every bacterial infection, the body produces antibodies against the invading bacteria, and the antibodies help eliminate the bacteria from the body. However in Rheumatic Fever, the antibodies mistakenly recognize and "attack" the heart valves, joints, and/or certain parts of the brain. This phenomenon is called "molecular mimicry", which means that proteins on the cell wall of the strep. bacteria are similar in some way to the proteins of the heart valve, joints, or brain. Because the antibodies set off an immune reaction which damages those tissues, the child with Rheumatic Fever can get heart disease (especially mitral valve regurgitation), arthritis, and/or abnormal movements known as Sydenham’s Chorea or St. Vitus Dance.

In PANDAS, it is believed that something very similar to Sydenham’s Chorea occurs. One part of the brain that is affected in PANDAS is the Basal Ganglia, which is believed to be responsible for movement and behavior. Thus, the antibodies interact with the brain to cause tics and/or OCD, instead of Sydenham Chorea.

If you are looking for traditional information, information your doctor has,the publication Pediatrics has a position on P.A.N.D.A.S. The cause (strep) and effect(tics, OCD behaviors) cannot fit into the scientific method just yet, so they are calling it an unproven hypothesis. I have to say it does sound very challenging. They do not recommend antibiotics for treatment.

This NY Times article talks primarily about OCD and the strep connection.

Here's an NIH website that describes this disorder.

The medical foundation, CIDPUSA is also a good reference.

Sunday, October 21, 2007

Birthdays, Tics, and Tremors, Oh My....

Leo turned 9 this week, his party was today. He loved getting his name announced on the loudspeaker at school and bringing in GFCF cupcakes. Fruit wouldn't fly this year, I am the fruit pusher. When I asked him what he wanted to bring, he at first named things that I knew he didn't like (like chocolate). He said, "But my friends like that kind of stuff." What a sweet boy, thinking of them when it's his day. He's so over-programed after years of NOT eating what they eat.

After negotiating a happy medium, "healthy" cupcakes, he was happy with all vanilla with vanilla frosting.

I asked how his friends liked them, for years they have passed even the most discriminating eaters, as I always apply generous amounts of frosting. He said, "I warned them Mom." But, warning aside, he said everyone liked them, just like previous years. And Leo was considerate in reminding me to leave one cupcake frosting-free for one of his friends.

We listened to all his birthday messages from his cousins, aunts and uncles, and grandmas. It brought tears to his eyes! A good birthday. A big weekend - a sleep-over with 14 boys for a friend's birthday, his last baseball game, and I hadn't a care in the world. I am beyond grateful.

I am happy to report that Leo has had a super year so far. He's got a wonderful teacher that is upbeat and seems to "live" for teaching. And no issues so far. He's learning a lot, and his new knowledge is really obvious. His teacher reports that he's a "delightful" boy with a lot of enthusiasm. He's learning cursive and actually likes it. Fine motor? Really? He's looking forward to learning more letters so he can write more words. He hangs out with different kids this year at recess - the baseball kids, but when it's rainy and there's indoor recess, he's back with his old best pal from kindergarten. I love this of course. He also likes to play wall ball.

He also sat next to his old best pal at his birthday party. His cousin on the other side. Very sweet! He's part of the nerd herd, in the top math class. He loves math, not a surprise. I look forward (sort of) to Parent/Teacher conferences. I wonder what she'll say - Leo reports he does talk-out-of-turn, but isn't sure if he does it less than last year. We'll see, but that's not what's on my mind. I'm thinking about testing. How will he test? Will he be able to demonstrate what he knows? Or will there be a gap? A processing issue? Untimed tests? A big year.

As I had mentioned, my daughter Sydney had been presenting minor tics (blinking and grimacing). After 3 days on the new protocol, she was tic free. I was elated. So quick! Temporarily, as one week later, Leo began blinking, and most distressing to me, presenting with something like strabismus. His eyeballs would roll horizontally back and forth, mostly to the right. I began feeling a bit P.T.S.S., but got myself together and immediately put together a protocol similar to my daughter's. As a birthday gift to me, Leo woke up on his birthday symptom-free. Yay!

Both were symptom-free for a couple weeks until I ran out of some of the enzyme. Then the tics appeared, minor, but were present especially around bedtime. I feel like I'm waiting for a million dollars to arrive (the enzymes). I'll be blogging about the cause of these tics soon....but in a nutshell, this is a symptom of strep. So when strep goes around as it indeed does, this is how it manifests in my children. No sore throat, no fever, no traditional illness.

I felt like a gift was laid upon my lap, I got an email from a mom of a 15 year old recovered boy. Merry Christmas early! I was so happy to hear from a mom of a child that is older than mine that is doing so well, and more importantly, happy. She wrote a passage titled "Then" which brought me back to when Leo was little. Perfect timing, as I always reflect back around Leo's birthday, as that's when he was diagnosed on his 2nd.

Artemisia got me thinking about Leo as a tiny baby:

I was really excited when I got pregnant. I was adopted later in life (thankfully), so I had always looked forward to a point where I'd have my own naturally family. When Leo began having small tremors following nursing at 2 months old, I was the only one that didn't think it was right. An infant shouldn't be having tremors, my instinct told me. I remember the pediatrician telling me it was probably nothing, but when pressed he referred me to a neurologist. I was so embarrassed, a new mom, sweaty, feeling awkward, nursing in front of him in his cold office. Did I mention I have giant breasts? Even before I was pregnant? Thank god I had the company of my husband. I got through it.

The neurologist dismissed them as nothing, and told me to go on with life and if things worsen, to let them know. Things didn’t worsen, but they stayed the same. That was bad enough. I dreaded the end of a feeding, looking down for any stir and followed by the familiar jittery movements. As tiny as they were, they seemed so huge that they took up the room.

Do nothing? Their words didn’t ring true to me. Everyone told me to believe the doctors. This is the Big Apple after all. Who am I, an insecure first-time mom, to question them?

By the time Leo was 4 months, severe separation anxiety kicked in. I couldn’t put him down for a second. Literally. I was so distressed. What was I thinking? I can’t do this, this whole mom thing. I must be doing something wrong and I have to get to the bottom of it. Leo had to be constantly held, he nursed EVERY hour just one side, and I couldn’t leave him in the care of anyone but my husband.

We babysat my friend’s baby that was just a few days older with no hiccups. This was the big plan, trading date nights so us new parents can get out. The baby was sweet, calm, and aloud me to put him down under the play mat. Adorable. We took lots of pictures of Leo’s first friend.

When it was our turn for a night out, I was filled with anxiety. I knew this may not work, but I had to try. Everyone told me that we just needed practice. That’s all, just practice. The family came over, excited about the prospect of extra responsibility. I didn’t know what to do. I felt like a deer in the headlights. In the arms of strangers, my screaming infant was so wound up he threw up. Embarrassed, I let my new mommy friend go home, pretending that we’d try another time. My hope for a new social circle went out that door too. I hung up my newly purchased post-pregnancy duds in the closet, knowing I may not see those puppies for a while. I knew something was different about my son, and I hoped that this ‘high maintenance’ stuff would eventually fade. No one seemed concerned. “All babies are different, everything is normal for a baby” is what I was told.

I watched while other moms seemed to move forward into the next phase, life with a baby. I stayed home far more than I ever expected with my baby I couldn’t leave. Leo had a sleep schedule that began with him waking at noon and going to bed at midnight. I tried tinkering with this, but regardless of what cruel things people suggested I do with a 4 month old, I stuck with my gut. Half the day was over for my new mommy friends before I left my apartment. I looked forward to my weekly ‘play dates’ with the other moms until I got a comment about Leo’s lack of expression. I got very upset but kept it to myself. The pediatrician continued to tell me that everything was normal, even when I told him I was concerned about his head control. Of course, we discovered later Leo had hypotonia and overall weakness.

In my new house in the suburbs, the isolation continued. Failed attempts with babysitters kept me at home with Leo rather than going back to work. One babysitter worked out if I left just for an hour. She was getting a degree in Early Childhood and wasn’t concerned either.

About a year later I began the search for what was 'wrong' with my baby, finally taking ownership of his wellness (and mine). After I self-diagnosed him, the rest is history, history we've all made. That was a long time ago, almost 9 years ago that my journey began.

My story is no different than thousands of moms out there. But we survive.

We figure it out.

Monday, October 08, 2007

Goodbye To My Rabbit

One of my bunnies, Brother, died suddenly yesterday. I'm very sad. I'm not sure how he died, but I suspect he ate something poisonous (they roam wild for part of the day) or that he caught a virus that attacked his nervous system.

Brother leaves behind Sister to eat the left over broccoli and apple cores by herself. She'll live a sole bunny existence, tolerating the dogs, the cat, and the various kids that visit her.

Brother and Sister together symbolize my duplicity on my blog - my private life and my Autism Advocacy life. Kind of weird that one side has passed. Am I jinxed?

Certainly, both sides of my life are alive and doing well - I'm working a lot on my writing goals and maintaining my main website. Things have calmed down a bit since the Jenny McCarthy 'explosion' that was my inbox. I'm back to a regular number of people asking for advice on how to get services or a dx. I'm grateful to the media that so many people have confirmation of Autism, hope, and some ideas that may work for their child. Funny writing grateful and media in the same sentence.

The kids are doing well, no issues so far this year and they both have very good teachers. This fall I'm focusing on my daughter's health - she's been presenting some minor facial tics (occasional eye blinking and grimacing) which is quite scary but not surprising. We have her on a detox/supplement protocol designed for her "environmental Tourettes."

For now, I don't have to worry about Leo since he's probably the healthiest in the bunch. I have no reason to complain, my job is so much fun, and my fall routine isn't too hectic. Of course, there's always Parent/Teacher Conferences mid-November. Leo says he still does the 'talking-out-of-turn', so we'll see what his teacher says. Ironically, he reports he doesn't do it in math class (a different teacher), when that was his topic that caused his excitement last year.

So we have just one bunny left. We'll enjoy her, but we'll certainly miss the most mischievous one, our Houdini bunny that could escape almost any pen.