Category Archives: PANDAS

Amazing Self Advocacy at the Dentist!

The kids had dental cleanings scheduled for after school today. Last time, Riley really wanted me to go back with her. This time, as I’ve done every time, I asked if she wanted me to join her? Or was she … Continue reading

Posted in appreciation, autism, PANDAS, PANS, special needs parenting, Uncategorized | 8 Comments

Lego Therapy

Our dining room table is perpetually covered in Lego. There is also a table in Seth’s room, and they often overflow the table and creep across his floor. There are several storage bins but the Lego can’t seem to stay … Continue reading

Posted in PANDAS, PANS, Parenting, Uncategorized | 12 Comments

Between Sleep and Waking

Standing beside his bed, in the dim of his nightlight, I think. Do I wake him? His sister has a snow day, but his school has not called it off. I watch him sleep. His body peaceful. Calm. Slow breathing. … Continue reading

Posted in PANDAS, PANS, Uncategorized | 8 Comments

Brain on Fire

I recently read Brain on Fire:My Month of Madness by Susannah Cahalan. It is about a young woman working as a reporter in NYC, who suddenly shows signs of psychosis. She spends over three weeks in the hospital experiencing mania, … Continue reading

Posted in autism, bio-med, PANDAS, PANS, special needs parenting, Uncategorized | 5 Comments

Thank you, that was three.

I love Seth’s teacher. Every morning the kids have a meeting, in which they sit in a circle and are given the opportunity to share. She picks the first kid, and the child shares something and then takes three questions … Continue reading

Posted in appreciation, PANDAS, Parenting, Uncategorized | 11 Comments

Beautiful, Beautiful Boy

So much has been going on I have not even had time to obsess over my new hair cut. A few years ago, before we even got Jingle, I checked out a local charter school here, hoping it might be … Continue reading

Posted in appreciation, PANDAS, Uncategorized | 14 Comments

Child With PANDAS Custody Taken from Parents via Boston Children’s Hospital

These are the shell shocked faces of parents who have been put through hell at the hands of Boston Children’s Hospital. According to their attorney Beth Maloney, they did absolutely nothing wrong. “They are caring, lovely people whose daughter was … Continue reading

Posted in PANDAS, Uncategorized | 46 Comments

Calming Tourette’s With Dental Appliances

I had Riley at the orthodontist’s today and we got to talking about Seth and his tics. The doctor told me about work being done to help patients with Tourette’s using dental appliances to stop the tics. Amazing. Read more … Continue reading

Posted in PANDAS, special needs parenting, Uncategorized | 8 Comments

Random Snapshots

Friday, the alarm woke me up and I stumbled into the bathroom. Riley was already in there, brushing her teeth. I grabbed my toothbrush and joined her, me in boxer shorts and a white t-shirt. She in her pj’s. She … Continue reading

Posted in appreciation, kids and dogs, marriage, PANDAS, Parenting | 9 Comments

New Beginnings

Riley went to school today. She started 7th grade at a small private school designed for kids with high functioning autism. She has a dream of going to high school (she thinks it will be like Glee), and in order … Continue reading

Posted in PANDAS, Uncategorized | 8 Comments

On the Mend

I have never seen Todd sick like he was on Friday. He looked frail and small. He is stoic. He never gets sick. After eight days of being sick, he agreed to go to the ER, and when he agreed … Continue reading

Posted in appreciation, Asperger's, IVIG, PANDAS, Uncategorized, vaccines | 18 Comments

Change of Focus

I’d say I’m about halfway back to my usual self. Not bad for 24 hours. I’ve been spending hours every day researching the latest treatments for Seth’s PANDAS. I feel like I’m on borrowed time. I fear if we don’t … Continue reading

Posted in appreciation, PANDAS, Specific Carb Diet, Uncategorized | 5 Comments

High Fructose Corn Syrup,Red #40, Yellow #5, Yellow #6 And Blue #1.

Camp is rolling along fine, and then it isn’t. We’ve been back on the Specific Carb Diet for a couple of months(working our butts off). The kids are eating like champs. Lunches are brought from home so no big deal. … Continue reading

Posted in Asperger's, PANDAS, Specific Carb Diet, Uncategorized | 4 Comments

Golden Ticket

Four days into summer day-camp, Seth’s tics started up again. The vocal and the whole body clenching. Has he been exposed to strep? Is he just wiped out tired from all the fun in the heat? Riley said a little … Continue reading

Posted in appreciation, PANDAS | 6 Comments

Helicopter Mom

It’s not that there is a shortage of things to write about. There are always a million things going on, only a teeny portion of which ends up here on the ole blog. Finding time has been the challenge. Doing … Continue reading

Posted in Asperger's, autism, bio-med, IVIG, PANDAS, special needs parenting, Specific Carb Diet, spirituality, Uncategorized | Comments Off

Specific Carb Diet….Again

So, we tried IVIG for six months, and while it is doing a bit of good in between infusions, by about the third week Seth’s tics start happening again. His strep titers are still quite high. It is more of … Continue reading

Posted in Asperger's, PANDAS, Specific Carb Diet, Uncategorized | 10 Comments

Saying Yes

Hello Asperger’s, Thank you for allowing me to walk with a girl who is so sweet, she absolutely cannot see bad in anyone. Even people who have been mean to her. Thank you for allowing me to bear witness to … Continue reading

Posted in appreciation, Asperger's, PANDAS, Uncategorized | 4 Comments

Open

So much has been going on. So much has not been going on. I’m in limbo. Last week Riley went to shadow for a day at a local special needs school. She was so excited. She had no qualms about … Continue reading

Posted in appreciation, homeschooling, PANDAS, Parenting, special needs parenting, Uncategorized | 9 Comments

Le Roy, NY Teens/PANDAS?

Press Release: LE ROY, NY TEENS: UPDATE FROM DR. TRIFILETTI Ramsey, NJ — February 22, 2012 — Rosario Trifiletti, MD issued the following statement today regarding the teens he is treating in Le Roy, NY. National attention was drawn to … Continue reading

Posted in PANDAS, Uncategorized | 3 Comments

Do No Harm (Phenergan IV Push)

Since Seth’s bad reaction to his IVIG I have tried to get in contact with the doctor who ordered it. He was not there the day of the reaction. Another doctor was on call. I wanted to make sure he … Continue reading

Posted in IGG deficiency, IVIG, PANDAS, Phenergan IV push, special needs parenting, Uncategorized | 15 Comments