- dilantin etc

[Guest guest]

also had a hypersensitive reaction to dilantin (phenytoin), and to

phenobarbitol, when it was used as a loading IV dose. An 'average' dose of

phenobarb tipped him into electrical status. Very scary.

The flickering eyes is one of 's toxicity signs, and it preceded him

falling into a coma like sleep - unrousable by pain etc. Took over 36 hrs to

bring him out of it.

Tegretol is one that affected him the same way, so all 3 of these meds

caused the same reaction, but they have also now been documented as ones

that aggravate his epilepsy syndrome (MAE). too has always been on

epival (or depakote, epilim).

Hill

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

> Since the fall and the return of sz, we have tried so many drugs for

second line AED. Since her last admission to 7C1 in April, we left with

Epival (always on that) and Tegretol. the first few weeks on Tegretol were

rough alot of side effects..but she overcame all that and it was like we got

our Brittany back!! Cogintively she was so much brighter she was night and

day compared to how she was on that Topomax. Her teachers even wrote a note

in her agenda last Friday amazed at how great she was.

> Anyway her tegretol level was low. It was at 32 when it should be between

35 and 50 but Dr. Rosenblatt our neuro said lets wait another week to see if

the level climbs on it's own at her present dose.

> On Saturday mornig she had a sz..,. i was devasted..my bubble broken

AGAIN!!! i spoke to the Resident who told me to add another 200 mg of

Tegretol to her morning dose.She had another one a 3 that afternoon. the

Resident told me to come in to ER and get a level just to be sure it is

still low therefore that being the reason for the sz. if not we would need

to find other solutions.

> we arrive at Emerg and she has yet another one....Britt's typical patten.

she never has isolated sz. Once they start they usually cluster.

> her level was still low it was 34. They then decided to give her a loading

dose of Dilantin in order to give the Tegretol a chance to build up in her

system.

> They started the Dilantin IV and she started complaining of blurred

vision. (not uncommon side effect with these CNS drugs right?) Within

minutes, she was completely out of it. I called her name and my god it was

scary. She opened her eyes so wide and her eyeballs were shaking back and

forth so rapidly. She tried to speak but couldn't. i ran and called the doc

who transferred her to th CRASH Room! She was becoming less and less

concious, started vomitting so they had to suction her. Her pulse decresed

and her blood pressure plummetted. I thought I was losing my baby.

> She stabilized within the hour but had to be closely monitored. ( Pulse

and BP). She apparent;y had a toxic reaction to the Dilantin.Her level of

that drug was fine or where it should have been but she is what they call

hypersensitive.

>

>

> brittany 10

>

> evamyth wrote:

> Hello,

> I've just found this group and I find your messages very helpful. My

> son Gerry will be 5 in June. He had his first seizure at 5 months.

> (November 30, 1998). He has Generalised Epilepsy with Febrile

> Seizures+ with the + being MAE (myoclonic-astatic epilepsy).

>

> We are currently waiting to find out if the Montreal Children's

> Hospital will continue offering the keto diet. Both their dieticians

> left to work in the private sector.

>

> , who are you seeing at the MCH? We have Dr. Poulin and are

> very happy with her. She told me that if the hospital cannot find a

> dietician, she would try to get us into Ste-e's program. Also,

> there's a hospital in Toronto that offers the diet.

>

> About this being cruel, everything I've heard says that if you do it

> right the child feels no hunger. If your kid is hungry then you know

> its time to fine tune the diet. Anyways, after 5 years of meds, he's

> still having seizures so I'm willing to try a " weird " diet for 6

> months.

>

> I hope all goes well for you.

>

> Eva