27/08/2025
They don’t have any new answers for Bobby.
So much of this process is strictly elimination of possibilities, so sometimes no news is good news when some of this stuff is quite life-changing, unpredictable, incurable and even untreatable.
His next MRI is scheduled for September 17 to see the quada equina nerve root in his spine.
We are attempting this one without anesthesia, he’s had so much pumped through his little body, so 🤞🤞🤞🤞🤞 fingers crossed he stays still and tolerates It, I get to be with him the whole time.
If it’s still “enhanced” (inflamed), they are leaning toward a suspected “possible” diagnosis of:
Chronic inflammatory demyelinating polyneuropathy; an acquired autoimmune disease of the peripheral nervous system characterized by progressive weakness and impaired sensory function in the legs and arms.
If his nerve roots are normal, that means it was caused by scar tissue building up from his multiple lumbar punctures (spinal taps).
His migraine medication dosage has been increased, hoping his daily visual disturbances could possibly be a symptom of migraines/headaches and the way they present in him.
If the new dosage doesn’t make any difference to him, then in a few weeks they may up his dosage again, or they may try a new migraine med altogether.
After these medication trials, if Bobby still has daily visual disturbances, then we know they all stem from his Papilledema/cranial pressure.
Bobby has a sleep study in October.
His tonsils currently occupy 75%+ of the oropharyngeal width and will be removed at Helen Devos children’s hospital in November.
His ENT said recent studies have been done with a percentage of them linking Intracranial hypertension association with sleep apnea.
Always worth a shot and he will get some relief no matter what.
Always inviting your prayers 🙏❤️💖🫶🧠💀✌️
