I love stumbling upon blogs of other parents who have paved the way in recovering their children. It’s bookmarked, and tonight, when I get some down time, I’ll be reading through this mother’s posts. I like her most recent post post. She’s not alone…I’m ANGRY too!! My anger is channeled into maintaining my focus on Jackson’s treatment. I can’t wait for the day I can walk into our former pediatrician’s office to see the look on his face when he sees Jackson, a changed and recovered boy. That day will come.
FYI, PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections
THURSDAY, JUNE 21, 2012
The One Where I Lose My Cool
It’s just hitting me. The enormity of it all. All the information to wade through. All the opinions that seem to clash with each other. One doc says a million supplements and diet changes. Others say antibiotics and ibuprofen (that B’s system can’t tolerate). Then there’s IVIG ($$$)….repeatedly. Or how about homeopathy. Have you tried GAPS, or perhaps the low oxalate diet, SCD? Silver? Belladonna?
I listen to other PANDAS parents. Doctors saying they don’t believe in PANDAS…but here try this band aid psych med. GI docs telling parents it must all be in their heads when their children have severe abdominal pain. Children misdiagnosed as Tourettes and put on medications that exacerbate the PANDAS.
Bladder issues. Food allergy? Inflammation? Information I read today: The basal ganglia controls the internal bladder sphincter. PANDAS attacks the basal ganglia. It’s the SAME thing that happens to people with Parkinsons. Wonderful. Do you know what else is associated with Parkinsons? Aluminum poisoning. All I know is that my child was potty trained at 2. He’ll turn 6 on Saturday and he’s not anymore. AND THAT IS NOT OKAY!
And it feels like this world goes on and doesn’t care about all these hurting kids. They are brushed under the rug. We numb ourselves with pop culture, food, prescription drugs, idiotic right verses left politics. The apathy is astounding.
But I am not angry at God. He has lifted us up and carried us through this. We have not waded through these waters on our own strength. A veil has been lifted from my eyes. I am no longer oblivious to the evil in this world. It makes me so thankful that God has prepared a place for us. A place where there is no evil, greed, selfishness. I am that much more thankful for His goodness and mercy. All this ugly is a blink of an eye…but our eternity is beautiful. I’ll hang my heart on that before I turn in for the night.