Dehydration update

C. is well hydrated these days but seizing like her life depended on it  Lots of that "central fever" (as the doctors here refer to that neurological, asymptomatic fever) and, we presume, withdrawal seizures due to that sudden drop in benzo dosage which the neurologist ordered. 

The occupational therapist called to brighten my day (just kidding)

There's nothing like a stay in hospital to grab some attention for your child from the school staff.

So yesterday the occupational therapist called me to discuss C.'s bout of dehydration and lethargy. The last time she spoke to me was years ago.

I was out. The Hubby took a message, urged me to call her back (I was inclined not to) and insisted "She means well." (I begged to differ.)

So for the sake of marital harmony, I returned the call.

She questioned me regarding C.'s diet, vitamin levels, malnutrition, insufficient calories,  the need to test for vitamin levels, the need to consult a dietitian, the undesirability of giving water when C. is reclining (she swallows it better that way when weak).

Everything but the kitchen sink.

Given the low self-esteem that's been plaguing me lately,  this little chat was the last thing I needed.

But somehow I swallowed it all, dutifully thanked and agreed with her on every score and emitted but one criticism: of  the aides who left C. dry and hungry for hours without even notifying us. The OT asked me to demonstrate to her how I give C. drinks while she's lying down with torso slightly elevated. I do this whenever she's reluctant to drink, lethargic or in the middle of the night.

The demo took place today.

The OT didn't like the position, advised me to elevate her even higher, and declared that nobody but I, she or the nurse should give her drinks that way. So it was concluded that the aides, when on their own, will be instructed to call us whenever C. refuses to drink.

I also filled her in on all sorts of info re C.'s behavior, seizures, eating habits and more. I believe - or at least hope - she was satisfied.

Then she gave me phone number of a dietitian who specialized in the Ketogenic Diet in order to ask her about the Modified Atkins Diet. I promised I'd call - but doubt I will. I mean there's just so much time in a day and so much energy in a 61 year old.

I think that's the last I'll hear from this therapist and believe the staff will now return to their policy of "benign neglect".

Happy days are not here again

Preparing C. for a fluid drip in the
local hospital emergency room

You can only avoid the ER for so long.

We'd succeeded at it for at least 15 years (neither the Hubby nor I remembers the precise number). But yesterday, after C.'s school called to ask us to bring her home early because of sleepiness, we realized that our DIY tactics weren't working.

She'd had a rather good morning, fed herself quite a few spoonfuls, walked nicely for a half an hour, wet her diapers a couple of times and seemed out of the woods. But shortly afterwards, during her hydrotherapy session, she took a turn for the worse.

At the hospital, we learned that her blood pressure and body temperature were low and the guilt set in. How could I have postponed taking her to the hospital for so many days? I confess that my selfish dread of getting stuck there for days had definitely been a factor.

But soon the doctors adjusted their diagnosis: her dehydration was actually mild and wasn't the sole cause of her extreme, puzzling lethargy.

That was confirmed when twelve hours of IV fluids did not revive her as was hoped. Her neurologist, guessing that the anti-epileptics could be involved, advised lowering the dosages of benzodiazepine (Rivotril) and the cannabis. We had been reducing the Rivotril at the rate of one drop/day every week. But she now advised dropping it a further 5 drops/day in one fell swoop. And the cannabis, to be dropped by 20-30%.

Both moves sounded awfully drastic to me at first. But I'm implementing them and hope there's sense to them. What do you readers think?

Just to spice up our near-24 hour stay at the ER, one doctor told us, after listening to C.'s heart, that she heard some sort of abnormality and an ultrasound is advised for follow up. But by morning, that suspect sound was gone and the second doctor in ER told us that she had consulted a cardiologist who said such abnormalities can be temporarily caused by dehydration and don't warrant concern or treatment.

The incident reminded us that no doctor had listened to C.'s heart in over a decade.

The ER doctors also asked us whether we'd ever pursued metabolic disorders as a possible cause for C.'s disabilities. While we do remember their brief mention  many years ago, they were never pursued, at least not doggedly. At our request yesterday, one ER doctor gave us the name of a local metabolic specialist whom we now plan to contact.

Could it be we overlooked the true culprit all these years while we focused on the the neurological and genetic options?

I've seen metabolic disorders mentioned frequently lately in the context of "medical child abuse" and know that it's a tough and unpopular diagnosis to arrive at. Did the neurologists steer us away from the metabolic world because of  professional bias?

In any case, these are not happy days for C. and us. All my energy is being devoted to keeping her fed and hydrated while she remains weak, minimally responsive and seizing more that usual.

The heat has struck hard

C. has had several days of dehydration, zero appetite and lethargy. For us, that's meant hours of giving her water and of spoon feeding her minimal portions of food. Celebrations erupt whenever she wets her diaper.

Today we had our wonderful home-visiting nurse come by to draw blood so we can see whether she needs more serious treatment.

We've been greeted twice now at the end of the school day with "C. refused to eat or drink and was dry all day."

So today, after her hydro session - in which she didn't do well - we brought her home lest she dry out again in the "care" of the staff.

From time to time emergencies arise that make me long for the good ol' "profoundly disabled with refractory epilepsy".

That's C. today, over on the right, while we await the blood test results.