Revisiting the VNS

The pressure sores are exerting plenty of pressure on me these days. Last week the main one seemed on the verge of healing but then did a 180 and looks like this [see pic below] today.

I texted the photo to our dear home-visiting nurse who promptly responded with revised treatment instructions: back to the Flaminal Hydro ointment.

On Tuesday, he came by and diagnosed an infection. He says to continue with that ointment but that if there's fever or increased redness to call him. (Might be a bit tricky with C. frequently running central fevers that are unrelated to any infection or illness.)

Otherwise, C. has been pretty stable, seizure-wise. This could be related  to her raised cannabis dosage. Nearly a year ago, we stopped at 11mg/kg/day which translated into 11 drops of oil three times a day. We were following the neurologist's instructions. But at our visit to her in April (my post), we learned that our dosage was far from the maximum.

(Why did the doctor stop there? I have a hunch she only prescribes the stuff and raises its dosage when parents prod her to.)

In any case, when I suggested raising it this time, she concurred. We're now at 14 drops, 3 times a day (i.e. 14 mg/kg). The doctor said that most patients do best at 15 but that 25 is considered the maximum.

True to form, I'm afflicted with a serious case of optimism again. The doctor didn't give any specifics about the rate of dosage rise so I'm just winging it. Last night, C. seemed very sleep and did her M.E.D.E.K. walking with her eyes closed for the first 20 minutes. I remember that she was also very sleepy when we first raised her to 11 drops.

At that April visit, the neurologist also suggested pursuing the VNS option. So on Tuesday we trekked with C. to this city's only neuro surgeon who implants the VNS. He was very friendly and forthright. Actually, to a fault (the forthrightness, that is). For instance he told us there's no chance that the VNS would improve C.'s cognitive skills. None whatsoever. And that the assurances we were given to the contrary by the VNS distributor's nurse/salesperson were bunk. She had insisted that even where seizures remain unaffected by the device, cognitive improvement was often detected.

His forthrightness even included this self assessment: "I haven't got the most VNS experience in this country but I have been implanting them the longest."

Not exactly a trust-inspiring line.

He went on to assure us that the device was very likely to improve her seizure situation by either reducing their frequency or intensity. (I don't quote statistics, he added.)

But then he proceeded to the risks involved. Since the device currently in C.'s chest (see photo) is obsolete, it precludes simply replacing it and connecting the new one to the old wires. That would have been  a simple procedure done with a local anesthetic.

Instead, the entire device and its wires would need to be removed and replaced - surgery that requires a general anesthetic. In addition, the risks posed by the implant itself include: infection in skin and even spreading to device - which would mandate a second operation to remove it - oh, and a stroke. He said it's never happened to any of his patients.  But still, I'd say.far from trust-inspiring.

See the VNS near C.'s collar bone?

I then asked him for his opinion about the procedure in C.'s case: "It's a doable and reasonable move." he said. He added that while seizure control wouldn't improve C.'s level of functioning "since her brain is already fully developed", it would halt her decline.

The thing is: she hasn't been declining for many years. She plateaued a long time ago. Which left me wondering how the VNS would benefit her. (I actually raised that with the Hubby while there and he sshh-ed me emphatically. He doesn't want the surgeon to suspect that we're less than enthusiastic.)

The surgeon was shocked by C.'s gauntness ("She has zero skin or muscle") and said that were she able-bodied she'd have been committed to the hospital ward for anorexics. We assured him she consumes large quantities of calorie-rich food and we have no clue where it all goes. He was equally stumped. His advice: Avocado. He said that some fat on her bones would  reduce the risk of  post-surgery complications.

Well, that's all the VNS news for now. The Hubby and I have agreed to give the raised dosage of cannabis a chance before deciding about the VNS.

Oh, and when we mentioned cannabis to the surgeon he didn't hesitate before declaring: "I don't believe in cannabis."

P.S. We didn't ask for his opinion on it.