The past 3 days have been hard for Joshua. His PANDAS has caused swelling and intense pain in his "thinking part" of his brain, he calls it. He knows it causes him to have thoughts that are not true and it takes him awhile to sift through it, not to mention the pain that accompanies it. Today he paced in the kitchen screaming to God to take the pain. As he talked more he began to talk about the wall of Jericho that Joshua defeated as God was with him in the battle. He then said, "the wall of Jericho is like my PANDAS and God's knight is like Joshua." He is fighting this battle with God…side by side and he is RELYING on HIM. I am so humbled & challenged as I watch my son's outlook towards this battle with PANDAS, and his dedicated step with Jesus by his side.For the past 2+ years....It is daily....it is every moment, every breath, every thought, every movement....
by Angel Thompson on Saturday, September 3, 2011 at 11:18pm
A moment outside the lodge at camp. He tries to sift through his thoughts and regroup. Later as we sat in a parking lot while Matt was inside a store he began to pray and ask God to make his PANDAS good so it could FIGHT the bad PANDAS. When he was finished he told me that the good PANDAS was God's knight to protect his brain, his house from the war inside.
I had just finished reading Colossians with JT last night and he began singing,"My Yahweh is real". A moment past and he asked, "Mommy, will I always have PANDAS or will it go away when I am an adult?" I told him I did not know, but we would keep taking one day at a time and trusting Jesus. With that he fell asleep.
A PANDAS GLIMPSE. (a short 2 minute clip JT asked me to make so others may understand)
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!
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.
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Short lines of the journey 8.04 - 8.29.2010
As we began to get out of the van last night from coming home from a meeting at the church Joshua said from the back, "JESUS, thank you for saving my life." We stopped and all then thanked Jesus for saving our lives....Matt and I teared. Through all of this chaos in his little life with PANDAS...he knows HIS ROCK!
August 4 at 10:55am
Joshua's Autism (PANDAS has increased his OCD...can you tell?)
Although, I do like the fact that he is so organized. :O)
(Actually, instead of looking at it as regression, I choose to look at it as his Autism is trying to bring order into the chaos that PANDAS has brought into his mind.) August 6 at 7:13am
Psalm 37:39 (the Message)
The spacious, free life is from God, it's also protected and safe. God-strengthened, we're delivered from evil— when we run to Him, He saves us.
August 6 at 2:37pm
As Joshua hides under Matt's desk at the church my heart is aching and attempting to maintain. My heart breaks for him and that there is nothing I can do but sit in silence with him as this PANDAS D/O brings such chaos to his thinking, functioning....LIFE. Sigh...LORD I know you are BIGGER! Please.....
August 8 at 10:43am
The straw, the camel, the back....our little girl finally had her breaking point last night with all the things happening with Joshua's PANDAS D/O and daddy's heart. I am so glad she knows she can come to me and cry and tell me how angry she is and how scared......pray for our proverbial backs to strengthen....this journey is HOT, ROUGH, STONEY, MUDDY, DUSTY, FOGGY….exhausting. Nahum 1:7, Joshua 1:9
August 14 at 12:38pm
Ladies of 8.12.2010: Thank you to my friend who waited as I sat with Joshua who was crying. Thank you to my friend who has experienced Joshua's PANDAS in full this summer and returned everyday to still watch and show him unconditional understanding and love. Thank you to my friend who came and hung out with me at the soccer game and after. You three know who you are and will know how much the moments have meant.
August 14 at 7:49pm
10:21pmPANDAS....AUTISM....ANXIETY....FEARS....Mommy please pray for me!!!!
August 23 at 8:20pm
His quote today...after one small thing stopped working....and a HUGE MELTDOWN...."Mommy, I JUST WANT MY OLD LIFE BACK." So, how do I encourage my little guy that this is a season....a very LONG season. He then stated, "I just want to be treated like an autism boy again."
August 24 at 8:51pm
2 days....he has been okay at school. I'm breathing....
August 26 at 10:29pm
Another steroid tx. Added meds.....
What he told Dr. Reed....I just want my old life back.
August 28 at 11:49am
“Mommy, I will take all of my medicine…I just can’t take the fire pills anymore.” What Joshua told me, while holding his tongue and crying after his last dose of his tx on day one.
August 29 at 5:09pm
