RE: advice

[Guest guest]

Hi Sandy and Colin,

My son Louie started having seizures when he was about 3 years old,like

colin he only has two or three a year and they are mostly febrile when he is

coming down with an illness.Louie was given an

EEG and we were told it came back as positive and that he would be

epileptic.He was put on carbamazipine medicine and has been on it ever

since,he is now almost 9 years old.He has 15 mls AM and 15 mls PM just

before bedtime,the morning dose makes him a little sleepy and grizzley ! but

it seems to keep his seizures away.Louie also sees spots moving about and he

gets very scared and clings to me.We have rectal diazepam that we give him

if we think his seizure is going on for too long,the doctor tells us to give

this after 10 mins but as im sure you know ,two mins can seem like 2 hours

when they are like this and i give the diazepam more or less two mins

tops.this usualy brings him out of it,but there has been an occasion when i

have had to give him two doses,the doctor pre told me this was fine to do

so.Louie has no side effects and im happy for him to be on this medication

if it means he can have fewer seizures,I myself find the whole seizure thing

a nightmare

and very distressing it makes me feel physically sick when Louie has one.and

i can tell by your email that you are also finding it very stressfull.The

only thing i can tell you is ,it will get better and you get used to dealing

with it ,I tell myself we've got it good because some children have seizures

on a daily basis and still have a full and active life (not sure about the

parents tho !!!) makes you wonder how on earth they cope?

I hope this has been of some help to you Sandy and good luck to you and

Colin in whatever decision you reach about his meds.From mel and louie

(pmg)xx

>

>Reply-To: polymicrogyria

>To: <polymicrogyria >

>Subject: advice

>Date: Tue, 22 Jun 2004 10:41:07 -0400

>

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[Guest guest]

Hi,

I am suprised that your son is not on seizure medicine. Prolonged seizures like

that is called status epilepticus and need immediate attention. My baby has had

quite a few of these episodes. The first one was the longest which lasted over

two hours. She was rushed to emergency room where it took them a long time to

stop it. She was only 2 1/2 months old. She was then transferred to another

hospital but did not have anymore events while there so she was discharged and

given Phenobarbitol. Anyway she has a long history. I do have diastat and that

is to be used when a seizure is longer than five minutes. I've had to

administer it to her on three separate occassions. Other times it has been

given to her in the ER or as an inpatient. Diastat is valium and it can cause

respiratory situations so I would keep watch on my baby's breathing.

Status epilepticus from what I understand does not cause brain damage but must

be stopped immediately. Status epilepticus if not treated immediately can

result in coma and/or death.

My baby is now 22 months and is on Lamictal, Keppra, Ativan, Valproic Acid,

Tagamet, and Reglan. She has Diastat prn.

Take care and be informed.

P.S. My baby for a time was on Dilantin and if the level was too low or too

high this would cause breakthrough seizures. Also FYI Dilantin and Valproic

Acid can cause liver damage so blood tests should be done often.

Elena, mom to Leah 22 mos with severe PMG, cerebral palsy, spastic quadriplegia

and severe reflux, 16 yrs, Emilio 10 yrs, healthy.

advice

Hi Everyone!

My name is Sandy, and my son is Colin . He has PMG , and is 7 years old. I

haven't posted in awhile. Colin had another seizure on Memorial Day. That

makes his 3rd. His first was when he was 5 years old, then he had a second

18 months later. This 3rd one came 9 months after the second. My concern is

what to do about medicine?? The Neurologist said it's up to us. She wants to

do another EEG and see if it is still normal. We are very concerned about

the length of his seizures. The Dr said to start timing from the start when

he says he sees " spots " in his eyes. We thought we were supposed to start

when he stopped responding to us. This last seizure he didn't respond for

12 minutes, but he didn't stop respnding for 15 minutes from when he first

complained about the spots in his eyes. The Neuro said that makes his whole

seizure about 30 minutes!! We were VERY upset. Colin has partial complex

seizures. He was breathing the entire time fine. We called 911, and the

paramedics said his oxygen level was 98% and his blood pressure was good.

They said he would just come out of it. He did.... and was very sleepy with

a headache. The thing I do not understand is ...what makes a seizure

dangerous? If they are getting oxygen , is the seizure itself dangerous and

can it cause brain damage? Our Neuro gave us a prescription for Diastat to

stop the next seizure, if and when he has one. My husband and I want to make

the best decision concerning whether or not to start the seizure medicine.

Any advice or input we would really appreciate.

Thanks,

Sandy Monto ( Mom to Colin ,PMG)

[Guest guest]

Hi Hana,

it would be a great idea to go to the seminar at Ashfield and

certainly without feeling guilty - it will be to your family's

benefit too if you lose weight as you will have that much more energy

and you will feel good about yourself too.

You can ask as many questions as you like here and it is always a

good idea to be well imformed.

The seminar should cover most of your queries but it is a good idea

to write down a list of questions too and if you still have more ask

the helpful people on this site.

Yes, you will find we are all in the same boat here, any excuse is

good for opening that fridge door!!!

Elaine

[Guest guest]

Hi Hana

welcome to Sydband. I am a new member myself and was banded last

Tuesday. I would definately encourage you to go to the Ashfield

Seminar. I went to that one and it was what helped me finally make

the decision to go. You need to phone and book as they do get booked

out. I didnt actually have my surgery through them but I did get lots

of information that was very helpful. I decided to go with another

surgeon who was recommended by another SydBand member and who suited

my needs.

The Ashfield people were lovely though!

Good luck and hope to hear from you soon

cheers

Angel

>

> Hi Everyone,

> I've been interested in getting the band done for a while but i

keep making excuses.

> I wouldn't know where to start and who to go to.

> There is a seminar in Ashfeild on the 14/8 i want to go but don't

want to go alone because then i feel like im betraying my hubby and 2

kids although he told me to go.

>

> I've been struggling with my weight for 8 years now and i've tried

every fad diet there ever was. I even went to the gym and i lost 10

kilos in 6 months 5 years ago. That was when i had all the support

from my personal trainer.

> I am still going to the gym but i seem to be putting on more weight

even though i'm following a strict eating plan.

>

> A while ago i was diagnosed with being clinically depressed started

taking medication for it but then i stopped and convinced myself that

i was overexaggerating the whole matter which is wrong of me i know

but i felt guilty feeling that way because of my kids and my husband

didn't understand. A culture thing i guess.

>

> I know this isn't a cure and the easy way out to loose the weight

which has made a home in me.

>

> I eat when i'm bored ,alone because my husband works long hours,

basically any excuse would suffice for me to have something to eat.

>

> I really would like someone to tell me how they went when they

first started their procedure ioe cost, rebates, recovery,etc

>

> I think i've raved enough about myself

> Hana

>