09.20.2010 PANDAS D/O Journey: JT's daily life

by Angel Thompson on Monday, September 20, 2010 at 4:30pm
Thoughts of his mommy:

My heart is aching as I see him on this roller coaster ride that won't stop. Please let him off to take a rest, lock the doors and chain the gate so he is not locked in the PANDAS fate. Release, a pause, FREEDOM he craves....his obsession is more now than the papers he saves.

We have found that humor gets us through, yet with HIS PANDAS this is far from true. As there is no humor in the attack to his brain as if his whole purpose for being is now a runway train. One he cannot stop, the impulses to strong, the sadness overwhelms…all the confusion seems wrong.

Yet in the midst, he pours out a song…with the simple words that reach HIM amidst the PANDAS throng.

God I love you, you are so awesome, I love you, I love you, I love you.

So today as he questions his own face…I see and hear YOUR trace. It lies within the words of his song to You as he crawls through the PANDAS throng.

JT, we will walk with you through this throng....because OUR GOD is awesome and HE is there in the midst...no matter what, HE IS HERE!

HOPE in the midst...HOPE beyond....HOPE!

Our son was dx with Autism in 2004. In 2010 he was also dx with PANDAS D/O, a disease that is listed as a "rare disease" by the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH). This means that PANDAS, or a subtype of PANDAS, affects less than 200,000 people in the US population.

To learn more to go oasisautism.org

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.

UPDATE ON JOSHUA

His neurologist has been amazing, supportive and has worked closely with Joshua. Joshua has gone through several steriod tx's in which he has become very tired of the "fire meds" and shared with me that he will take his usual medication, but not the fire meds.

His tics have decreased. He has an understanding of what PANDAS is doing to his brain and he is trying daily to work through the effects. He is still fearful of losing me that he continues to sleep in our room. His daily prayer is that God will take the PANDAS and let him be his old autism self. Last night he put together an activity for the whole family to do together called LEGO CHALLENGE. It was amazing and I will be posting it soon. He is taking one day at a time as we are. This will be a long journey. Yet, when he is feeling fearful his first response, even in the midst is to go to JESUS! What a testimony he is.