Re: (unknown)

[Guest guest]

Hi Becky,

When I was diagnosed in Feb , the Rheumy started me on 30mg a day soon to be

increased to 60mg. I am completely off the pred now for about a month and

contrary to my Rhuemys' advice I stopped the Methotrexate from 6 pills(15mg)

per week , cold turkey ( 3 weeks ago). I would listen to your Doc if he is

familiar with Stills. As far as what causes it, I have been to a homeopath.

Her opinion and that of her colleague is that through the years my extreme

allergic reaction to poison ivy accumulated up to a toxic level in my

system and when my stress level hit a certain point my immune system

weakened, and I got symptoms of " stills disease " . This accompanied with

exposure to arsenic(the day before my symptoms started) while removing paint

from an old mantle piece slammed my immune system. As far as testing the

water, I think anything is a good idea since the cause of these symptoms

known as " stills disease " is not known yet.

Y

(unknown)

> Hello

>

> This is Becky again. My son was diagnosed Sept 1st and started on

> 30mg of Pred a day. Yesterday his temp went up to 103.2 and today it

> went to 102.1 and was accompanied with the rash. The doc wants to up

> his does to 40mg a day starting tonight. Has this happened to anyone

> else or your children? I just wish I knew what caused all of this,

> where it came from, and why can't he get rid of it!!!!! Isn't 40mg a

> day a lot??? I thought he would be on the pred for awhile then it

> would go away. I guess I haven't accepted it yet, maybe I am still

> in denial. My husband wants to have the water tested for bacteria,

> he read that bacteria causes the onset of still's. Has anyone else

> heard of that???

> In denial in NY.

> Becky

>

>

>

>

[Guest guest]

I haven't heard of the bacteria theory, but it would fit in with the case

being made for antibiotic therapies.

Yes, 40 mg is a lot, but hopefully he won't stay that high for long. The

doctor is probably just trying to get the disease under control, which is

probably the most important thing right now. After that happens, he'll

probably start weaning your son off the Prednisone and maybe trying other

less harmful therapies.

The first flare is usually the worst, I've heard. Maybe you can find some

comfort in that...

Angie

(unknown)

> Hello

>

> This is Becky again. My son was diagnosed Sept 1st and started on

> 30mg of Pred a day. Yesterday his temp went up to 103.2 and today it

> went to 102.1 and was accompanied with the rash. The doc wants to up

> his does to 40mg a day starting tonight. Has this happened to anyone

> else or your children? I just wish I knew what caused all of this,

> where it came from, and why can't he get rid of it!!!!! Isn't 40mg a

> day a lot??? I thought he would be on the pred for awhile then it

> would go away. I guess I haven't accepted it yet, maybe I am still

> in denial. My husband wants to have the water tested for bacteria,

> he read that bacteria causes the onset of still's. Has anyone else

> heard of that???

> In denial in NY.

> Becky

>

>

>

>

[Guest guest]

I beleive it is caused by a bacteria. So do a lot of doctors. Dr. Brown wrote

a book explaining the bacteria theory, called, " The Road Back " . You can get a

copy at your library. I read it and it makes a lot of sense. There are tests

that can even identify the specific bacteria called Mycoplasms. Nobody knows

how you get the bacteria though. I suppose anything is possible. But what

really matters is that there are antibiotics that can treat the Mycoplasms. For

more information on this type of therapy go to www.roadback.org. If your doctor

does not beleive in this therapy he will not advise it though. So you must find

one who will. There are doctors out there who will. The roadback site message

board will notify you of doctors in your area who can help if you ask. I hope

this helps. It has helped me.

> Stillsdisease bsg104@...: Fri, 07 Sep 2001 22:05:41

-0000

>Reply-To: Stillsdisease

> (unknown)

>Hello

>

>This is Becky again. My son was diagnosed Sept 1st and started on

>30mg of Pred a day. Yesterday his temp went up to 103.2 and today it

>went to 102.1 and was accompanied with the rash. The doc wants to up

>his does to 40mg a day starting tonight. Has this happened to anyone

>else or your children? I just wish I knew what caused all of this,

>where it came from, and why can't he get rid of it!!!!! Isn't 40mg a

>day a lot??? I thought he would be on the pred for awhile then it

>would go away. I guess I haven't accepted it yet, maybe I am still

>in denial. My husband wants to have the water tested for bacteria,

>he read that bacteria causes the onset of still's. Has anyone else

>heard of that???

>In denial in NY.

>Becky

>

>

>

>

[Guest guest]

Yes there were some studies of giardia infection prior to the onset of jra

in some children, also studies with salmonela, and of course mycoplasmas.

My belief is that these bacterias do play a definite role in the onset of

this disease, maybe not in everyone's case, but certainly in some. I feel

that there is no " one " trigger. For some the trigger may have been a

vacine that they just recieved, some may have been exposed to a virus,

others mycoplasmas and other bacterias.

There was a study on all this and the only risk factor that was found was

stress. Well stress certainly puts your immune system in distress and

allows you to catch a virus or bacteria more easily in the first place.

[Guest guest]

Hi, Becky,

Don't know anything about the bacteria. My husband sometimes thinks Marc's

Stills was brought on by a car wreck we had when he was an infant -- some

cartilage in his face was damaged, and perhaps that set up an inflammatory

reaction. Who knows?

Anyway, Marc has been on up to 40 mg prednisone TWICE a day, and now is on

alternating days of 2.5 and 160 (yes, 160). Forty a day is high -- but if

that's what it takes, don't fight it. You'll probably be able to wean him

down soon. He'll put on lots of weight, and it will break your heart, but

you'll get through and so will he. And we will all be pulling for you both.

Take care, and keep us posted.

Marilyn Mc.

On Fri, 07 Sep 2001 22:05:41 -0000, Stillsdisease wrote:

> Hello

>

> This is Becky again. My son was diagnosed Sept 1st and started on

> 30mg of Pred a day. Yesterday his temp went up to 103.2 and today it

> went to 102.1 and was accompanied with the rash. The doc wants to up

> his does to 40mg a day starting tonight. Has this happened to anyone

> else or your children? I just wish I knew what caused all of this,

> where it came from, and why can't he get rid of it!!!!! Isn't 40mg a

> day a lot??? I thought he would be on the pred for awhile then it

> would go away. I guess I haven't accepted it yet, maybe I am still

> in denial. My husband wants to have the water tested for bacteria,

> he read that bacteria causes the onset of still's. Has anyone else

> heard of that???

> In denial in NY.

> Becky

>

>

>

>

[Guest guest]

Hi Alison, no doubt Henry is seeing this as a final defeat but you are right,

it's just a bump in his path. Kids in general are pretty black and white, OCD

kids can be *very* black or white and have lots of problems seeing overall

progress instead of success or failure with no middle ground.

You wrote:

>I was wondering if one of you could give me some advise about Henry.

After a fantastic weekend and no licking on Monday he has just

crumbled. This morning he snuck downstairs to lick his hands, though

i did not find this out till i caught him in the kitchen. Then he

says today at school he has not washed them as he just could not

face it. Was it to much to soon? I have told him that it is ok i

knew it would be a battle and at times he may slip, but he just

seems to have resigned himself now to the fact that he will lick

them and does not want the torture of trying to stop. Do i give him

a day or two break or do we start again from now?

*****I would start again from now, due to the fact that his belief there is no

value in trying may grow stronger the longer he avoids washing his hands to

avoid triggering the need to lick them. You want to keep this a small bump in

the path rather than an overwhelming victory for OCD. I suggest you make sure

he knows that he made tremendous progress over the past few days...that he did

something that lots of *adults* with OCD are too afraid to even try to do. Tell

him now it's time to work on the licking like going up stairs, first one step,

then the next. If he can imagine he's afraid of heights, he may get the idea of

just one step first, get used to that, then take the next step, etc. all the

while getting closer to the top (no licking and not being bothered by the

feeling that he has to lick.)

>Should i try a

minute before licking and build it up or try and help him resist as

he choose himself?

*****Yes this is a good plan and I had a lot of success using this technique

with my child. He may well appreciate you taking charge at this point. You may

want to explain to Henry that OCD (or whatever he calls it) plays mean tricks

and is trying to make him feel that he can never win, but indeed he can if keeps

on trying. Make sure he knows the feeling he needs to lick will get littler and

littler the more he makes it wait (this is opposite of how it feels, the kids

feel the need will get bigger and bigger until they can't stand it.)

Does Henry like sticker charts or something similar? Some kids do well to

have a visual record of their successes hanging on the refrigerator. You could

offer some small reward or outing for X number of times of successfully putting

off licking.

I'm sorry Henry's had this little setback but I'm sure he'll do very well

taking a more gradual approach to extinguishing this compulsion.

Take care Alison,

Kathy R. in Indiana

[Guest guest]

Thanks-it means so much to me when things are not going well to have the

comfort and support from all of you when there is really no one else who

understands.

Lynne

>

>Reply-To:

>To:

>Subject: (unknown)

>Date: Mon, 13 Oct 2003 05:58:39 -0000

>

>HI Lynne:

>

>Hugs to you!

>

>It is tough to live with a disorder which is treatable but not

>curable. It is wonderful that your son appears not to be suffering

>as much from his OCD.

>

>Poor sleep hygiene and colds/flu can make symptoms of OCD worsen.

>Luckily symptoms also typically wane so things will get better

>again.

>

>In the early days of OCD I was just like you, always alert for when

>it needed to be bossed back. It drove my son, Steve, to

>distraction. It took me a long time to see him and not to see OCD

>first. Once I could do this things were much easier for both of us.

>However this took us a few years. He was diagnosed at 10, likely

>suffering unknown to us since at least 7, and is now 16 and doing

>generally very well.

>

>There are reports of OCD going away, but I do not hold onto this as

>something for Steve. If it were to happen I would be way more than

>delighted. For now I can celebrate his strength, his determination,

>his courage, his humor and his love which together mean more than a

>cure for OCD. HOpe this helps. Take care,a loha, kathy (h)

>

>kathy.hi@...

>

>

> > Does anyone ever feel like I do...like when is this ever going to

>end or go

> > away. My darling son has been virtually symptom free for 5

>months. Last

> > nite he told his dad that ocd was bothering him during the day at

>school and

> > he had ignored it cause he knows it is stupid. He did not want me

>to know

> > because than I ask him 20 questions (cause I want to fix it, stop

>it,

> > whatever I can). He had spent the nite two places on the weekend -

>BIG

> > mistake. He actually admitted that he thinks a lack of sleep, plus

>he has

> > been fighting a cold, does make it come at him. He was up very

>late both

> > nites.

> > It is like we are doing well and I am afraid to enjoy things

>because

> > inevitablely it rears its ugly head again.

> > I know I should be happy for the break for him of 5 months and I

>am. I know

> > I should be happy that it is so low (if it is-that is my worry),

>but does it

> > ever get better or just go away?

> > Any of you moms who have experienced it...is it better when you get

>older?

> > Doesn't it seem like the kids have it worse? I just feel like I

>can never

> > let my guard down forget carefree about anything.

> > Thanks

> > Lynne

> >

>

>

_________________________________________________________________

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[Guest guest]

Nice article! Very informative! Thanks Chris!

Haggard, LPI

Haggard & Associates Investigations

PO Box 4212

Whittier, CA 90607-4212

Phone Fax

<A HREF= " http://r6q6o2/ " >HAI</A>

[Guest guest]

thanks your speedy reply was appreciated and you always offer

invaluable advise and support. He is not really a television watching child

(something until now i have been proud of). I know it will get better but i

am tired he has been off for a week and like you i am a single mum and he

constantly wants to be active. that is why i am feeling it more. the one

thing that is nice is a bit of peace and quiet and at the moment when it

finally comes at night time all i can think about is him. More than anything

i just needed to let off steam, thanks again

you take care (i need you) Alison

-- (unknown)

Hi Alison,

I know you'll get responses on this one, as others have kids

similar. I thought Tourettes as I read your note too. That

shrieking sounds familiar, seems I've read it here.

I sometimes wonder if my (14.5) has mild Tourettes. He's

gone thru periods where he'll make sounds (sort of like a hum) and he

went thru other stages where he had a few " facial contortions " or

movements and maybe a type grunt. But then he'll go months without

any of those behaviors. So I'm not sure.

Any way to get him to quiet down with his chattering and give you a

break?? How is he with a favorite show/movie on, can he sit and

watch? I'd pick TWO and give yourself a long break!

> This is going to be a moan, sorry but have tried to sleep for two

> hours and it is just not happening.

> Henry, my son who is seven now, who can not wash his hands without

> wanting to lick them is now also making lots of peculiar noises. As

> i have just said to someone else (sorry i forgot yr name) in a

[Guest guest]

Dear Alison,

My daughter who is now 11 has been making noises since her onset of OCD

at 4. All through first grade she hummed tunelessly and we got lots of

complaints about it. She still does it, although she often sings now too so it's

less

irritating. She had some facial tics (lip licking) in those early years as

well, but we just wrote that up to a nervous habit. She has been diagnosed with

Tourettes Syndrome now in addition to her OCD and ADHD - a common triad,

particularly in kids who have PANDAS or PITANDS, as she does (the non-strep

version

of sudden onset OCD). Your son's noises may be tics. They don't always start

with movements, although that is the usual progression.

I don't want to make you feel more worried. The tics are occasionally

distressing, but they aren't the worst thing by far. Annie's ADHD is the thing

we

find hardest to deal with, followed by the OCD. And tics wax and wane, like

OCD, and they change over time, so just when you think you can't stand another

throat clearing or squeak, something else will pop up to replace it.

Why is it taking so long to get a diagnosis? (I'm sorry I've forgotten -

I know you've explained several times).

Hang in there - it will get better.

in NV

[Guest guest]

, thanks for the sincere interest you always show! Following seeing the

specialist she asked for assessment forms to be completed by me, a friend

and the school. Mine and my friends ( who coincendently has two well

adjusted grown up children and has worked with 'parents in distress' an

organisation for parents with children with problem behaviour ) both gave

consistent answers, but it seems because schools is inconsistent,eg, he is

working well, sociable, popular, they have asked for him to see a creative

therapist for at least three sessions, as she can not make a diagnosis.(

like he would tell his teacher he is petrified on sports day even though he

won every race last year!!!) She said then they will see if he needs any

treatment or they will leave him as he is. This is were i was astonished and

have told them they can not leave him able to only wash his hands at home,

and a maximum of three times a day, this is a child i could never get out of

the sink or bath playing with toys! He has so far been to two, attends one

more, next Monday and then there will be a review.

As for the constant noises off him he says he feels scared when it is quiet

and so makes a noise to stop the silence, but i think now some of the noises

he just can not control.Especially a high pitched shreek, it is just not

him.

Coinsidently he also has the worst scarring now around his mouth from

constantly licking his lips. Something until your mail i just thought was

Henry. At present i would not even mention my suspicions about Tourettes to

the specialist as i have very little faith in her anyway, and like another

person wrote about teachers, i get the impression that they think i am a

single mum with nothing better to do than look for symptoms in my son. Not

as the mum in full time education that has to take days off and catch up the

work at home, while running the house single handed.

I have learnt so much more from this site and got support i could not have

got any where else, it is all that has kept me sane this last few months.

Roll on next week and the review that follows, and please all keep your

fingers crossed we finally get some answers!

Thanks again i hope all your family are well and i know it get better.

Take care Alison

-- Re: (unknown)

Dear Alison,

My daughter who is now 11 has been making noises since her onset of OCD

at 4. All through first grade she hummed tunelessly and we got lots of

complaints about it. She still does it, although she often sings now too so

it's less

irritating. She had some facial tics (lip licking) in those early years as

well, but we just wrote that up to a nervous habit. She has been diagnosed

with

Tourettes Syndrome now in addition to her OCD and ADHD - a common triad,

particularly in kids who have PANDAS or PITANDS, as she does (the non-strep

version

of sudden onset OCD). Your son's noises may be tics. They don't always start

with movements, although that is the usual progression.

I don't want to make you feel more worried. The tics are occasionally

distressing, but they aren't the worst thing by far. Annie's ADHD is the

thing we

find hardest to deal with, followed by the OCD. And tics wax and wane, like

OCD, and they change over time, so just when you think you can't stand

another

throat clearing or squeak, something else will pop up to replace it.

Why is it taking so long to get a diagnosis? (I'm sorry I've forgotten -

I know you've explained several times).

Hang in there - it will get better.

in NV

[Guest guest]

>

>

> When our son was younger he had a number of symptoms which seemed to

> overlap with SID, however now they are more like OCD.  So the E & RP

> has been very effective. 

>

> Have you read the book, " The Out of Synch Child? "   If this sounds

> like your child you might want to try the OT interventions that many

> parents on this list have described as helpful.  In our family we

> found it most helpful to view pretty much everything as OCD and

> respond accordingly.  You might want to send an email addressed: Ask

> Dr (fill in the blank), where you can get responses from our official

> list docs.

>

> Our kids are often hypersensitive to sensory information e.g how

> things feel, sound, smell, taste, etc.  I have met a number of adults

> with OCD who experience life in the same way.  I try to be

> understanding when Steve seems over the top about something as I

> figure maybe for him it is extra loud, itchy, annoying, noticeable,

> etc.

>

Interestingly enough my older daughter has always had a large number of

sensory issues and SID. She was having some issues dealing with my

sons' sudden outburst of tics, OCD, and other behaviors (PANDAS) and

started seeing a therapist. The therapist listened to us describe some

of the things *she* was doing and, given my son's difficulties and the

possibility of a genetic sucseptibility, theorized that it might

actually be some mild OCD.

To tell the truth, I didn't really agree at all, but was glad to try

anything. As time has gone on, I can see more and more that it is

indeed OCD. (And I wonder just how mild/subclinical it is).

In the past, I had always believed that, for example, due to her

sensory difficulties, it really did feel funny for her socks to not be

pulled up evenly and/or her sheets to not be on exactly straight. Now,

in hindsight, I can look at all the " evening " behaviors and see them

for what they are.

I remember when she was little: Was the problem that the seams on the

socks were bothersome; or, was it that it was impossible to get them on

exactly straight. And, what possible sensory reason could anyone have

had to need the loops on their shoe laces the same size.

Unfortunately for us, after years of treating these things as simply

" oversensitivity, " and doing our very best to " make things better "

she is having an extremely difficult time reframing these things as

obsessive thoughts. So, where my son (who is only 7) is having a great

deal of success winning battles over his much more severe OCD through

behavioral strategies. My daughter, who is older (11), has much milder

impairment overall, and is taking medication to help, is still not

making nearly the same amount of progress. (Of course, we as parents,

are having a much worse time with her as well, because it is very hard

for us to remember to see her behaviors as part of OCD)

The interesting thing is that as I look at my students with sensory

issues almost all of them also have some obsessive and/or anxiety

issues too. I find myself wondering it the two are much more related

than previously thought.

Oh, and I do think that SI therapy is very compatible with CBT. The

only thing I would have done differently is changing how we, as

parents, reacted to her behaviors.

Jeanne

jwestpha@...

NBCT - Exceptional Needs (2000)

[Guest guest]

> It is now almost winter

>here in Australia NSW and I'm not sure how to keep my kombucha temps up, I

>thought of trying an electric blanket but I don't know if that will work.

I add twice the starter to my kombucha in winter, and also let it ferment

about twice as long as I do in the summer. Actually, I have found that the

slower brew gives a more consistent result and more satisfying flavour overall.

~*~*~*~*~*~*~*~*~*~

Canfield

~We always grow in the direction in which we express ourselves.~

" The law of the Lord is perfect, converting the soul: the testimony of the

Lord is sure, making wise the simple. " Psalm 19:7

[Guest guest]

! What kind of seizure do you think he is having? had an EEG done in Oct and was dxed with a seizure disorder! He has the staring kind! I forgot what those are called! He is on Depekote!Stacie BAurora ILSent via BlackBerry by AT&TDate: Fri, 1 Aug 2008 14:39:23 -0700 (PDT)To: <AutismBehaviorProblems >Subject: (unknown) my son had a eeg test done and it was not normal , We think he may have had a seizure . We have to wait until the 18th to see a neurologist .I'm very worried ! Does anyone have any advise on seizures ? I don't want to look at Web Md or Google because I am too scared to be bombarded with too much information and scare myself too death . Can he have one anytime and how do I sleep ?

[Guest guest]

I don't know what kind , he was throwing up and unresponsive and his eyes were kind of crossed he was kind of shakey but it could have been from throwing up ? , he's not on meds for ityet . Did your EEG say it was not normal ? thats all the doctor would tell me , so I have towait until I go to the neurologist . I hate waiting ! (unknown)my

son had a eeg test done and it was not normal , We think he may have had a seizure . We have to wait until the 18th to see a neurologist .I'm very worried ! Does anyone have any advise on seizures ? I don't want to look at Web Md or Google because I am too scared to be bombarded with too much information and scare myself too death . Can he have one anytime and how do I sleep ?

[Guest guest]

How much Depekote? How does it effect him? Pat K

! What kind of seizure do you think he is having? had an EEG done in Oct and was dxed with a seizure disorder! He has the staring kind! I forgot what those are called! He is on Depekote!Stacie BAurora IL Sent via BlackBerry by AT & T

From: Huff <severenwinter>Date: Fri, 1 Aug 2008 14:39:23 -0700 (PDT)To: <AutismBehaviorProblems >Subject: (unknown)

my son had a eeg test done and it was not normal , We think he may have had a seizure . We have to wait until the 18th to see a neurologist .I'm very worried ! Does anyone have any advise on seizures ? I don't want to look at Web Md or Google because I am too scared to be bombarded with too much information and scare myself too death . Can he have one anytime and how do I sleep ?

Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos.

[Guest guest]

Do you know what med he was put on? Pat K

Hi, ...my little man had an EEG as well, and he did not show seizure activity...I think they need to do it longer and we may have to revisit it at some point...that was when they first started diagnosing my son for Autism (he is 21 months old)...

My friend whose child is about 17 now, had an EEG at age 3 (he has Autism), and they found that he was having ones that were not visible to human eye..........they put him on medicine and it changed their lives. He began talking within months of the meds.

This is only one story, and I know meds can have side effects but for this family the Neurologist, the information, and the medication was all this little man needed to acquire the beginning of language

Hope this helps.

(unknown)

my son had a eeg test done and it was not normal , We think he may have had a seizure . We have to wait until the 18th to see a neurologist .I'm very worried ! Does anyone have any advise on seizures ? I don't want to look at Web Md or Google because I am too scared to be bombarded with too much information and scare myself too death . Can he have one anytime and how do I sleep ?

Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos.

[Guest guest]

Hi, ...my little man had an EEG as well, and he did not show seizure activity...I think they need to do it longer and we may have to revisit it at some point...that was when they first started diagnosing my son for Autism (he is 21 months old)...

My friend whose child is about 17 now, had an EEG at age 3 (he has Autism), and they found that he was having ones that were not visible to human eye..........they put him on medicine and it changed their lives. He began talking within months of the meds.

This is only one story, and I know meds can have side effects but for this family the Neurologist, the information, and the medication was all this little man needed to acquire the beginning of language

Hope this helps.

(unknown)

my son had a eeg test done and it was not normal , We think he may have had a seizure . We have to wait until the 18th to see a neurologist .I'm very worried ! Does anyone have any advise on seizures ? I don't want to look at Web Md or Google because I am too scared to be bombarded with too much information and scare myself too death . Can he have one anytime and how do I sleep ?

[Guest guest]

Sweet Pat, Good morning to you I do not, but can find out if you need the info. Again I know some of these meds can have two effects they make you crazy, and or they make it better (well I guess they can do nothing at all)....so, you know me, I'm not spouting any for sures...............I will email my friend and ask her.

Have a great Saturday!

e

(unknown)

my son had a eeg test done and it was not normal , We think he may have had a seizure . We have to wait until the 18th to see a neurologist .I'm very worried ! Does anyone have any advise on seizures ? I don't want to look at Web Md or Google because I am too scared to be bombarded with too much information and scare myself too death . Can he have one anytime and how do I sleep ?

Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos.

[Guest guest]

Thanks, e, I'm interested because Karac has begun appearing to have something that looks a little like seizures; it is just sort of eye squeezes and pause for a few seconds. I don't know if itis a tic or something that might need medication. Pat K

Sweet Pat, Good morning to you I do not, but can find out if you need the info. Again I know some of these meds can have two effects they make you crazy, and or they make it better (well I guess they can do nothing at all)....so, you know me, I'm not spouting any for sures...............I will email my friend and ask her.

Have a great Saturday!

e

(unknown)

my son had a eeg test done and it was not normal , We think he may have had a seizure . We have to wait until the 18th to see a neurologist .I'm very worried ! Does anyone have any advise on seizures ? I don't want to look at Web Md or Google because I am too scared to be bombarded with too much information and scare myself too death . Can he have one anytime and how do I sleep ?

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[Guest guest]

Stacie, did they capture the seizure activity during his staring

spell? My son was having staring spells and a abnormal eeg but he

never was captured having them. My description of him staring and a

abnormal eeg lead us to believe he was having seizures. He seems to

have out grown them and now is off meds with a better eeg. But I was

wondering since it was never captured was it seizures or just his

condition of autism? I am afraid that it really wasnt seizures and I

may have did him more harm with medication. Its just another crazy

thought of mothers guilt. kathy

>

> ! What kind of seizure do you think he is having? had an

EEG done in Oct and was dxed with a seizure disorder! He has the

staring kind! I forgot what those are called! He is on Depekote!

> Stacie B

> Aurora IL

> Sent via BlackBerry by AT & T

>

> (unknown)

>

>

> my son had a eeg test done and it was not normal , We think he may

have had a seizure . We have to wait until the 18th to see a

neurologist .

> I'm very worried ! Does anyone have any advise on seizures ? I

don't want to look at Web Md or Google because I am too scared to be

bombarded

> with too much information and scare myself too death . Can he

have one anytime and how do I sleep ?

>

[Guest guest]

Elaine, what meds does your daughter take and how do they effect her behaviorally? Pat K

My daughter has seizures. She actually has three kinds..absent, eye blinking, and head nods. Her's are controlled presently. She was diagnosed at 4.5. She is 15 now.She does react to the seizure meds mostly behaviorally ,however, she has had a drug rash to at least one. It take diligence, lots of obervations, and willingness to advocate for your child, and a good dr that will work with you, but you will eventually find meds that work.And for some, there isn't any problems at all with the meds.

elaine

Thanks, e, I'm interested because Karac has begun appearing to have something that looks a little like seizures; it is just sort of eye squeezes and pause for a few seconds. I don't know if itis a tic or something that might need medication. Pat K

In a message dated 8/2/2008 7:40:22 A.M. Central Daylight Time, ljdjd1234 writes:

Sweet Pat, Good morning to you I do not, but can find out if you need the info. Again I know some of these meds can have two effects they make you crazy, and or they make it better (well I guess they can do nothing at all)....so, you know me, I'm not spouting any for sures...............I will email my friend and ask her.

Have a great Saturday!

e

(unknown)

my son had a eeg test done and it was not normal , We think he may have had a seizure . We have to wait until the 18th to see a neurologist .I'm very worried ! Does anyone have any advise on seizures ? I don't want to look at Web Md or Google because I am too scared to be bombarded with too much information and scare myself too death . Can he have one anytime and how do I sleep ?

Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos.

Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos.

Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos.

[Guest guest]

Thanks, that is very good information. You went through a lot to finally get what worked. Pat K

she takes zonegran and keppra for her seizures. If she takes 100mgs of zonegran twice a day, she will have more seizures and she becomes almost manic. So we lowered it to 50mgs twice a day and added 500mgs of keppra twice a day to that. She needs those two meds to control her seizues. Both alone for her don't. She also take tegretol but that is for moods. We just weaned her off of klonopin for anxieties and are going to put her on celexa in a week or so.

And if she does okay on that, we may take her off of tegretol.

she was on

Depakote-got extreme rage

dilantin-broke out in a rash

lamictal-screamed and became house bound because of anxieties.

Also didn't sleep

We had a neuro that didn't know that zonegran could cause manic stuff.

so we put her lithium..and her hands all at once swellled up huge. ER dr said she wasn't reacting because she wasn't toxic....on her blood work.yeah right. I stopped it.Her psych dr was out of town and he came back the next day. told me you could be allergic without be toxic.ugh.

Got a new neuro and he knew right away what the problem was. we lowered it and she sleep for the first time in weeks.

Seizure meds are very tricky. However, if you do your homework and have a good dr, it can be very good too.

since we got the right combination, my dd's language has just exploded. She is considered mr but she is learning more too. Puberty also has been good for her..she would be doing very well now if it wasn' for pms...LOL! she only gets it every other month thankfully but she is sure a pill for a week until her period shows up. the dr thought celexa might help with that too. I need to do some research on it. tends to react to the things that are in the minority. My husband does that too so we learnt thru him to read the weird side effects.LOL!

Elaine

(unknown)

my son had a eeg test done and it was not normal , We think he may have had a seizure . We have to wait until the 18th to see a neurologist .I'm very worried ! Does anyone have any advise on seizures ? I don't want to look at Web Md or Google because I am too scared to be bombarded with too much information and scare myself too death . Can he have one anytime and how do I sleep ?

Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos.

Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos.

Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos.

Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos.

[Guest guest]

My daughter has seizures. She actually has three kinds..absent, eye blinking, and head nods. Her's are controlled presently. She was diagnosed at 4.5. She is 15 now.She does react to the seizure meds mostly behaviorally ,however, she has had a drug rash to at least one. It take diligence, lots of obervations, and willingness to advocate for your child, and a good dr that will work with you, but you will eventually find meds that work.And for some, there isn't any problems at all with the meds.

elaine

Thanks, e, I'm interested because Karac has begun appearing to have something that looks a little like seizures; it is just sort of eye squeezes and pause for a few seconds. I don't know if itis a tic or something that might need medication. Pat K

In a message dated 8/2/2008 7:40:22 A.M. Central Daylight Time, ljdjd1234 writes:

Sweet Pat, Good morning to you I do not, but can find out if you need the info. Again I know some of these meds can have two effects they make you crazy, and or they make it better (well I guess they can do nothing at all)....so, you know me, I'm not spouting any for sures...............I will email my friend and ask her.

Have a great Saturday!

e

(unknown)

my son had a eeg test done and it was not normal , We think he may have had a seizure . We have to wait until the 18th to see a neurologist .I'm very worried ! Does anyone have any advise on seizures ? I don't want to look at Web Md or Google because I am too scared to be bombarded with too much information and scare myself too death . Can he have one anytime and how do I sleep ?

Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos.

Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos.

[Guest guest]

my son 14 and he has seizures.he has tonic seizures and here latey his behaviors are worst we think it could be from abifity but not sure he is on two seizure med for his but we think he is have small ones that we are not able to see cause of didnt things. becky

Subject: Re: (unknown)To: AutismBehaviorProblems Date: Saturday, August 2, 2008, 3:15 PM

Elaine, what meds does your daughter take and how do they effect her behaviorally? Pat K

In a message dated 8/2/2008 12:57:35 P.M. Central Daylight Time, forresters2@ embarqmail. com writes:

My daughter has seizures. She actually has three kinds..absent, eye blinking, and head nods. Her's are controlled presently. She was diagnosed at 4.5. She is 15 now.She does react to the seizure meds mostly behaviorally ,however, she has had a drug rash to at least one. It take diligence, lots of obervations, and willingness to advocate for your child, and a good dr that will work with you, but you will eventually find meds that work.And for some, there isn't any problems at all with the meds.

elaine

Thanks, e, I'm interested because Karac has begun appearing to have something that looks a little like seizures; it is just sort of eye squeezes and pause for a few seconds. I don't know if itis a tic or something that might need medication. Pat K

In a message dated 8/2/2008 7:40:22 A.M. Central Daylight Time, ljdjd1234yahoo (DOT) com writes:

Sweet Pat, Good morning to you I do not, but can find out if you need the info. Again I know some of these meds can have two effects they make you crazy, and or they make it better (well I guess they can do nothing at all)....so, you know me, I'm not spouting any for sures....... ........I will email my friend and ask her.

Have a great Saturday!

e

(unknown)

my son had a eeg test done and it was not normal , We think he may have had a seizure . We have to wait until the 18th to see a neurologist .I'm very worried ! Does anyone have any advise on seizures ? I don't want to look at Web Md or Google because I am too scared to be bombarded with too much information and scare myself too death . Can he have one anytime and how do I sleep ?

Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos.

Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos.

Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos.