Re: increased effect of medication?-Shelly

[Guest guest]

Hi ,

Yep, it sure has been a dramatic turn around - in fact it's been long

enough now where I'll probably keel over if he were to have one anytime

soon, but I'm always on the alert for those little signs that we all know

too well......If and when it happens I'll deal with it I guess, and put the

patient hat back on

The acidity problems with seem to come about when for whatever

reason his ketones go too high for too long, (last yr I think the carnitine

inclusion helped set it off) as the hospital lab bhb tests done this time at

the same time as the ph, showed he had gone above what I would call a

comfortable level for him. My testing at home here hadn't really given me

any clues, but I have to admit I had been slack with blood ketone testing

round that time, and I'm not 100% sure my kit was that accurate

anyway....Urine ketones certainly didn't give me too many hints, when he had

a lab bhb of 5.7, his urine ketones at the same time showed only just '8',

so once again I have decided they are not that helpful in the big scheme of

things...

Anyways, his blood ph was on the acidic side (which is where I prefer it

to be, but this was mebbe a bit too much ) but his base excess was probably

too low, he was at - 8 which has given us problems in the past.

Towards the end of the week of nausea/vomiting etc his bicarb slowly

started increasing, and the hosp said he was compensating on his own, like

without us adding any alkalinisng agent in (which I was loath to do).

Trouble is, that when this compensatory process happens, they can

'overshoot', (and I know urine ph is not that reliable, but our Drs told us

it was still a ballpark to refer to), and in the following week he started

having urine phs of 7.0 and above, which history says is not a good place

for to be. This in turn lowered his ketones (I spose the alkalinity

was negating the acidity of the ketone bodies, but I'm not too sure).

The dietician wanted to either add some cals (he hadn't grown in height or

weight in the previous 6 weeks), or lower his ratio, but we are all still in

a holding pattern to see what his body is going to do now - like was that a

temp hiccup, or is it something he is going to keep on doing.

The last few days have seen his urine ketones start to rise up again,

(always 16 + by bedtime again) and his urine ph has gone back to being very

acidic, the 7.0s stopped a few days ago, and he is back to between 5 and 6

at night, which is where he had been for quite a while before the nausea etc

started.

A lot of the actual vomiting btw was as his ketones were high and as his

meds peaked, and this may have been because both are acidic inducing (esp

the topomax) tipping him over the edge mebbe, not sure - obviously we

couldn't be getting blood gases done all the time he was doing it.

We have upped his protein slightly this week, and then if that goes

smoothly, we are going to do another small cal increase if he carries on

with the 16 +s, dietician wants his bhbs back down to around the 4.0 mark to

try and prevent a sustained period of high ketones in case it starts him

'cycling' - like going too acidic again as a result, compensating again etc

etc.

He is/was not as serious re the acidosis as Langan, his was comparatively

mild, he mainly had problems late/aft and night time when his ketones were

at their highest point, this is the only time we saw actual puking, but her

blood levels etc were also a lot more extreme than his.

He has now developed a nasty cold, so that will prob throw things out and

mean any other changes might have to be put on hold, dunno, waiting....

PS - Yeah, you sure can still say Ethan's Mom

Are you doing ok?

----- Original Message -----

> I didn't realize had been seizure free for so long. I know

> things can change quickly but that's a fantastic stepping stone.

> Someday when you have time I would love to know more about this bicarb

> thing. With both you and have issues with it, I am so curious.

> , Ethan's mom (I can still say that right?)