Re: losing control help

[Guest guest]

Sorry to here about Damon. Is Damon having constipation problems? Caitie has

been having seizures every morning again. But she has been constipated. We are

giving more mirilax now to see if it helps. Caitie is on 4:1 and 1100 cal.

all g-tube feed. We go see our Nero Friday and I think she will want to add

Depakote, then start going off zonogran. Have you called at Riley?

Sherri ~(mom to Caitie)

[Guest guest]

Sorry to here about Damon. Is Damon having constipation problems? Caitie has

been having seizures every morning again. But she has been constipated. We are

giving more mirilax now to see if it helps. Caitie is on 4:1 and 1100 cal.

all g-tube feed. We go see our Nero Friday and I think she will want to add

Depakote, then start going off zonogran. Have you called at Riley?

Sherri ~(mom to Caitie)

[Guest guest]

Sorry to here about Damon. Is Damon having constipation problems? Caitie has

been having seizures every morning again. But she has been constipated. We are

giving more mirilax now to see if it helps. Caitie is on 4:1 and 1100 cal.

all g-tube feed. We go see our Nero Friday and I think she will want to add

Depakote, then start going off zonogran. Have you called at Riley?

Sherri ~(mom to Caitie)

[Guest guest]

I don't have any advice as I am just as new as you are. But I

do want to offer support. We are in the same boat as you. (((Damon)))

>

> Damon is 15 mos on a 4:1 ratio. Had really good sz control first

> week, started to lose the second and thrid week, got it back when

we

> upped the ratio, now I am losing it fast and hard. No sickness, no

> shots. He is g-tube fed, and his keytones are consistently large.

> Glucose is great, I don't know what heppened and what to do. He is

> on pehonbarb, keppra and zarontin. Nuero won't take hime off meds

> till better sz cvontrol, but we are losing it. Why would this

happen?

>

[Guest guest]

I don't have any advice as I am just as new as you are. But I

do want to offer support. We are in the same boat as you. (((Damon)))

>

> Damon is 15 mos on a 4:1 ratio. Had really good sz control first

> week, started to lose the second and thrid week, got it back when

we

> upped the ratio, now I am losing it fast and hard. No sickness, no

> shots. He is g-tube fed, and his keytones are consistently large.

> Glucose is great, I don't know what heppened and what to do. He is

> on pehonbarb, keppra and zarontin. Nuero won't take hime off meds

> till better sz cvontrol, but we are losing it. Why would this

happen?

>

[Guest guest]

Obviously, I'm not a doctor!! That said,there was a little girl on 3 drugs when

we initiated and they immediately started weening her off of one. has

never been on more than two at a time, so I can't say anything from experience,

but the dietician told that mom that it was unlikely the 3rd drug was doing

anything for her daughter. Again, I have NO EXPERIENCE with this, and if your

neuro won't budge, I don't know what to tell you to do! So frustrating, I'm

sure! Good luck!

Leigh

Sign up for Internet Service under $10 dollars a month, at

https://signup.mybluelight.com

[Guest guest]

Still sounds like toxicity in my humble opinion. Not many kiddies can cope

with consistently high ketones as well as 3 AEDs.

Give your neuro Freeman's book to read where it says that med levels can go up

when in ketosis even when no change is made to the physical dose. And even if

blood med levels do not change, this does not mean the way the med is affecting

the kiddie isn't changing.

Mention of barbiturates (so phenobarb) is specifically made I think, and your

Dr should have knowledge about the protein binding mechanisms of medication

being affected when in ketosis - the ph shift can cause subsequent shifts in

medication strength.

It does happen, there are countless numbers of parents on here who have seen

this occur, and many centres/hospitals are now wising up to this fact. Toxicity

can and will bring with it toxicity induced seizures, which can and will 'mask'

the positive benfits the diet could well be having. Not sure which hosp you are

through, but I know from reading on here and at other websites that Hopkins is

one of the hosps who are not a fan of 3 meds with the diet, can your neuro seek

a 2nd opinion on this? Or is he from there? In which case, Dr Freeman himself

may be able to advise?

Consistently large ketones, with or without meds can be a problem on it's own

as well, I know that would not fare well if his ketones were always

high/high, but this is an indivdual thing, some kiddies do need that high level

all the time.

Perhaps checking blood gases to rule out acidosis as a cause for the seizures

might be prudent as well.

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

From:

Damon is 15 mos on a 4:1 ratio. Had really good sz control first

week, started to lose the second and thrid week, got it back when we

upped the ratio, now I am losing it fast and hard. No sickness, no

shots. He is g-tube fed, and his keytones are consistently large.

Glucose is great, I don't know what heppened and what to do. He is

on pehonbarb, keppra and zarontin. Nuero won't take hime off meds

till better sz cvontrol, but we are losing it. Why would this happen?

[Guest guest]

I agree with Bill. I would talk to your neurologist about weaning

one of the medicines, or at least checking drug levels. You could

always go to s Hopkins for a seconds opinion. There is also a

great neurologist, Dr. Elaine Willey, at Cleveland Clinic who we saw

for a second opinion at one point.

Debbie (mom to Bryce, 5 1/2)

>

> Damon is 15 mos on a 4:1 ratio. Had really good sz control first

> week, started to lose the second and thrid week, got it back when

we

> upped the ratio, now I am losing it fast and hard. No sickness, no

> shots. He is g-tube fed, and his keytones are consistently large.

> Glucose is great, I don't know what heppened and what to do. He is

> on pehonbarb, keppra and zarontin. Nuero won't take hime off meds

> till better sz cvontrol, but we are losing it. Why would this

happen?

>