I know you guys have been waiting, I don’t have much to offer.
Gannon has a fibro lipoma of the filmum terminale. If you google it, it’s associated with kids with spina bifida and tethered Cord syndrome. Maybe Gannon has a form of that, maybe not.
This is an abnormality of his spinal cord. It could get bigger and cause more problems as he gets older. This could mean something, this could be nothing. This could be the answer to all of our questions – this could explain every single one of Gannon’s symptoms. It could be totally benign. We were supposed to find out today but we didn’t.
Gannon has anal achalasia – this could be totally explained by his fibro lipoma or it could be totally unrelated.
Gannon could have a genetic condition. Doctors are leaning more towards Ehlers Danlos syndrome and less toward Prune Belly Syndrome but we won’t know until we consult genetics which also didn’t happen today. His distended bladder, undescended testicles, and paper thin abdominal muscles could be prune belly syndrome or totally explained by the fibro lipoma.
Gannon may need a laminectomy (spinal surgery) to cure/treat his fibro lipoma, he may not. It could be nothing.
Gannon’s low muscle tone cannot get better.
Gannon can gain strength in his muscle though through physical therapy but you can’t change muscle tone.
Gannon is being referred to a muscular dystrophy clinic. This could just mean he is being referred to a clinic who specialized in muscle disorders, this could mean they need to rule out muscular dystrophy.
Gannon is being referred to a neurosurgeon and a geneticist, all in the muscular dystrophy clinic.
It’s all up in the air, the ride home from Milwaukee was the longest 4 hours of my life, Gannon threw up on the way home, we both cried on the way home, we were both so sick of being gone. We still didn’t get a diagnosis. Only more questions, now thrown into the outpatient world of coordinating appointments.
Someone once told me chase the therapies, not the diagnosis. We will start physical therapy ASAP.
The most reassuring conversation I will take away from this week was with one of the residents caring for Gannon.
“We see a lot of kids who are perfectly healthy and parents INSIST there is something wrong with them but they have a perfectly healthy normal child. This is not that. There is an answer to be found. This isn’t just coincidence. Your concerns are valid. Something is wrong but it isn’t life threatening today.”
That’s what I know which isn’t much. I’ll update when I know more.
Have a good night friends!