A Dinosaur Tale by Brayden

Recently, Brayden's homebound teacher asked that he write a story.  His assignment for the week was to come up with the characters and the story's problem.  I know it takes him a long time to develop a thought but after 20 minutes of trying to get him to name a few characters I about gave up.  Then he started to twitch, grab his neck and follow a series of other compulsions and tics before spewing out this entire story.  He apparently had to develop the whole story before he could name his characters.  I thought it was really sweet and wanted to share.  Here it is...

"Once upon a time, a Triceratops and a T-rex had a picnic.  The T-rex brought meat and the Triceratops brought plants.  They wanted to share their food but they ate different foods.

The next day, they both were searching for a friend who ate both things so they could share.  They kept looking everywhere.  Then they found a dragonfly and they wondered if it ate both things.  The dragonfly just flied away.

They were in the forest and they saw something run up a hill so they ran after it to see what it was.  They saw a dinosaur that had a long neck, was kind of small, with legs that could move fast.  It was a Gallimimus!

The T-rex and the Triceratops said, "What do you eat?"  The Gallimimus said, "I eat plants and meat."  Then they asked the Gallimimus if he would like to have a picnic with them.  The Gallimumus said, "yes".  Then they all got to share their food.  The End."

An update!

So last post I mentioned that we were headed to New Jersey to see an "expert" in PANS/PANDAS.  The trip went as well as one can go and it was humbling to meet Dr. Trifiletti (Dr. T) and all the brilliance he brings to this disorder.  For Brayden, he added another antibiotic and more lab work.  For Teagan, just more lab work.

The results showed that Teagan had both a current and past infection to the Coxsackie virus, type B, and antibodies for a past infection to Type A.  Type A is commonly known as hand, foot and mouth disease.  Brayden had antibodies forming for Type B. It is interesting how the human body works.  Neither of my children have ever had symptoms of either virus that I'm aware of yet their body is fighting it.  Both were prescribed an antiviral to stop the process.

Teagan's labs showed again many "interesting" things that unfortunately required yet more lab work that is still pending.  She continues to intrigue every doctor she encounters with her lab results and clinical presentation.  Dr. T did a great job of explaining the possible connection to Teagan's fever disorder as a toddler and her current symptoms.  Apparently she has an immune marker now that is common among children battling the fever disorder she had as a toddler.  That is why you pay this man the big bucks, to find connections like that.  His current theory on Teagan is called an "alternative fever response".  Instead of battling infections with a fever, she develops untraditional symptoms to viruses attacking her body.  I'm still learning about this "alternative fever response" hypothesis and hope to post more on it later.  All I know is she doesn't get a fever anymore for any illness and that is not a good thing!

For now, this is all I can provide for an update until we have another phone consult with Dr. T.  He ordered extensive genetic testing, lyme testing and many other tests.  We talk again in 10 days.  The wait never ends!

Where's the logic?

All the doors in the house slam shut, all the blinds are shut and every light is turned off.  This is a ritual I previously thought was a silly quirk until it disappeared.  Now that it is back, the red alarms are going off.  It is not Brayden, it is his sister Teagan.  Our child that a neurologist recently termed as "scientifically intriguing". As a researcher, that is an exciting label, as a mother, it is terrifying.

I have spoke for the past few months about our journey with Brayden in battling PANDAs.  He is stable at the moment.  Not improving, but not regressing.  He will see a "expert" neurologist in New Jersey on October 14th and until that time, we just hope each day continues without further regression.

As for Teagan, I haven't posted much about our journey with her mainly because she is "scientifically intriguing" which means the doctors do not know.  She has been diagnosed with Pediatric Infection Triggered Autoimmune Neuropsychiatric Disorder (PITAND) which is a close relative of Brayden's PANDAS. Basically she has similar symptoms but we don't know the exact trigger all the time.  For Brayden, it is strep alone, whereas his sister is triggered by any virus or bacterial infection.  Her most recent trigger according to labs was a virus named CMV.  This is a relative to Chicken Pox and Mono and gave her mono type symptoms, along with the OCD type behaviors.  She was given an antiviral and all of those type of symptoms disappeared.

So why is she suddenly regressing?  On Friday, I received a call after school that the boy she sits next to left school early due to suspected strep. He had left school the previous day ill as well.  Teagan does not have any strep symptoms but she was exposed to it so her body naturally develops the antibodies.  So those antibodies start attacking the brain and there you have it. The doors all have to be shut.  Everything has to be done in a particular order that makes no sense to anyone else.  She screams in anger and throws anything that gets in her ritualistic way.

Therefore, we are not just taking one child to this expert neurologist, but two.  We are so hopeful that this man will give us the answers we desperately seek and the solutions that will put both our children on track. So hope along with us as we look forward to finally seeing a doctor that can find the logic in this chaos!