Re: new here - Hello

[Guest guest]

Hi Ann:

I have a question. What came first the seizures or the eating disorder?

You know that the brain and the gut are closely related. Many people have

seizures due to food allergies, and just toxic blood that causes inflamation.

Also certain mineral and vitamin deficiencies can cause seizures. Starving your

body could have you in a state of deprivation of these substances. and purging

can throw your whole chemestry down the toilet. I don't mean to be your doctor

(I am not one) but there are a lot of things that you could try to improve your

seizures. (decrease intensity, frecuency or eliminate completly). But It

requires taking really good care of yourself and making some changes in your

lifestyle.

It requires loving yourself and really wanting to improve the quality of your

life. It sounds like you are working on your eating disorder and that is your

very first step. Congratulations!

I don't think you can really work on your seizures until this is completly

under control because you have to give your brain what it needs and remove the

junk that makes it malfunction. But here is something that you could start

with... keep a journal ... write down every time you have a seizure what you

ate and did the day before and the day of the seizure. then try to find

patterns. Your brain is sensitive to many things. This is what you are going

to discover. In the mean time, drink home made vegetable juice everyday. this

does not make you gain weight and it nurishes your body.

4 carrots - 1 stick of celery - 1/2 of and apple. When you get more brave

you could add parsley, or spinach or beet. in smaller amounts. these are your

mega nutrients.

Drink a lot of water because you are probably cronically dehydrated and this

alone can cause seizures. Do not eat any dairy products, sugar, excessive salt

or black pepper. Eat lots of vegies, been, seeds, nuts fruit and fish.

Your brain needs some fat and water to work properly besides all the

nutrients. . Starving it is sabotage. I hope you can manage to do this. I

will be happy to give you more info.

Remember, it seems that you are walking in a dark tunnel and you think you

will never see the light.

But you will see the light, and you will even be able to laugh and feel the

joy of living. You will look back and see this time of your life l as some dark

episode that is long gone!

I promise!

Ann <last_n_line101@...> wrote:

hi - new here.

would like to thank everyone for letting me join the group. I've had epilepsy

since i was about 9 or 10. I'm now in my 30's. I've had many things going on in

my life, more so when i was younger. due to the problems i have has caused my

seizures to not fully be under control as the doctor tells me. one condition i

have that started when i was about 11 or so is I have a eating disorder. I binge

and purge. This has improved greatly and I am doing much better then I was about

5 yrs. or so ago. But i still have the problem and with this my doctor says is

the reason why my seizures are not fully under control due to medication. I take

a great amount of meds. (4 different types) twice a day. i do my best to control

myself. i do not eat much like i should.

i do not expect others in this group to give me the answers to help me stop or

try to be my doctor. It is just nice to be able to have others with epilepsy

that do know how important medication is. Also to help learn about epilepsy.

this is something i know little about.

So do not feel I am trying to find the answer to be cured of this problem, if

that makes since. I just need to learn and understand epilepsy more and the bad

side effects that i am doing to myself when it comes to epilepsy. I do try my

hardest - like I said it has GREATLY improved. With that I am very proud of

myself.

Thank you again for letting me join.

---------------------------------

Everyone is raving about the all-new beta.

[Guest guest]

Hi Sandi, The people here are awesome so you are in the right place! My son was diagnosed ADHD and "central nervous system disorder". The AS traits weren't as prevalent when he was younger as they are now so it was hard for them to diagnose him. Can you get a referral from your pd to a pediatric neurologist? Wouldn't the insurance cover that kind of referral? That's the type of doctor that finally diagnosed my son. Good luck!dannomom <dannomom@...> wrote: Hi my son is 10 and has mutliple medical issues and was recently evaluated by genetics and he suggested we test him for spectrum disorders/asperger. This has been on my radar since he was 2 because of certain things I noticed in him. Strict adherence to nonsense routines, obsessive counting, knowing at 2 all the car brands and their logos, all the restaurant jingles (even thought he didnt eat), hand flapping, strange spinning, odd gait, not looking in eyes, covering his head when overwhelmed. We did get a diangosis of Sensory Dysfunction Disorder when he was 2. Now I am trying to get him evaluated and having a very difficult time, here in Boston area, testing I guess is not covered by insurance (they claim its a school issue??) and costs almost $3,000. We have a lead to a doc who does evals so I am calling on Monday. My son goes to 5th grade next year at the big middle school. He has always been sort of outside

socially, nobody plays with him, etc. This year has been an absolute nightmare, teasing, bullying, etc. School has always been his love, he loves going, this year its not so much! I read with interest the posts here they sound so like my son. Any advice about getting diagnos, dealing with school, support, etc. is welcomed. With all of his multiple needs and this AS on top of it, I am at my wits end, I cant stand seeing him suffer this way. Thanks Sandi

[Guest guest]

Hi Sandi! Welcome to the group! I'm in the Philly area and we had a hard time getting our son evaluated, too. Isn't that horrible to be in an area that is rich in research, education and medical institutions, yet have a hard time with this? Have you tried to get him evaluated at school? They should have a Child Study team available to evaluate him and provide services. Also, like Reba suggested, try a pediatric neurologist. I was going crazy making calls and searching for someone to see my son. One call led to another and I got him an appt with a ped neuropsychiatrist. The doc was even a participating member on our insurance, so all it cost for me was the copay. He was very knowledgeable, so he was able to quickly assess our son and advise us on the spot. Finding an ongoing counselor was a bigger challenge and we are paying for that privately. Mimsdannomom <dannomom@...> wrote: Hi my son is 10 and has mutliple medical issues and was recently evaluated by genetics and he suggested we test him for spectrum disorders/asperger. This has been on my radar since he was 2 because of certain things I noticed in him. Strict adherence to nonsense routines, obsessive counting, knowing at 2 all the car brands and their logos, all the restaurant jingles (even thought he didnt eat), hand flapping, strange spinning, odd gait, not looking in eyes,

covering his head when overwhelmed. We did get a diangosis of Sensory Dysfunction Disorder when he was 2. Now I am trying to get him evaluated and having a very difficult time, here in Boston area, testing I guess is not covered by insurance (they claim its a school issue??) and costs almost $3,000. We have a lead to a doc who does evals so I am calling on Monday. My son goes to 5th grade next year at the big middle school. He has always been sort of outside socially, nobody plays with him, etc. This year has been an absolute nightmare, teasing, bullying, etc. School has always been his love, he loves going, this year its not so much! I read with interest the posts here they sound so like my son. Any advice about getting diagnos, dealing with school, support, etc. is welcomed. With all of his multiple needs and this AS on top of it, I am at my wits end, I cant stand seeing him suffer this way. Thanks

Sandi

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[Guest guest]

Thanks for your response. We were seen by the chief of pediatric

neurology several times. He did loads of testing and diangosed him

as having " sensory integration disorder " He has cardiac and GI

issues as well and theres more confusion because of the complexity of

his medical stuff. We are now beginning the neuropsych route to try

to get to the bottom of his PDD like symptoms. Whew!

1@...> wrote:

>

> Hi Sandi,

> The people here are awesome so you are in the right place!

> My son was diagnosed ADHD and " central nervous system disorder " .

The AS traits weren't as prevalent when he was younger as they are

now so it was hard for them to diagnose him.

> Can you get a referral from your pd to a pediatric neurologist?

Wouldn't the insurance cover that kind of referral? That's the type

of doctor that finally diagnosed my son.

> Good luck!

>

> dannomom <dannomom@...> wrote:

> Hi my son is 10 and has mutliple medical issues and was

recently

> evaluated by genetics and he suggested we test him for spectrum

> disorders/asperger. This has been on my radar since he was 2

because

> of certain things I noticed in him. Strict adherence to nonsense

> routines, obsessive counting, knowing at 2 all the car brands and

> their logos, all the restaurant jingles (even thought he didnt

eat),

> hand flapping, strange spinning, odd gait, not looking in eyes,

> covering his head when overwhelmed. We did get a diangosis of

> Sensory Dysfunction Disorder when he was 2. Now I am trying to get

> him evaluated and having a very difficult time, here in Boston

area,

> testing I guess is not covered by insurance (they claim its a

school

> issue??) and costs almost $3,000. We have a lead to a doc who does

> evals so I am calling on Monday. My son goes to 5th grade next year

> at the big middle school. He has always been sort of outside

> socially, nobody plays with him, etc. This year has been an

absolute

> nightmare, teasing, bullying, etc. School has always been his love,

> he loves going, this year its not so much! I read with interest the

> posts here they sound so like my son. Any advice about getting

> diagnos, dealing with school, support, etc. is welcomed. With all

of

> his multiple needs and this AS on top of it, I am at my wits end, I

> cant stand seeing him suffer this way. Thanks Sandi

>

[Guest guest]

Hi MIms: Yes we have been involved in school since early

intervention transition at age 3. He gets multiple services. They

keep saying he " is not severe enough " I believed them even though I

know/knew something wasnt right. The geneticist recently said " Hmmm,

well thats why its called a spectrum isnt it? " He is a genetics

specialist with a subspecialy of pedi-psychiatry, odd combo but gives

him a unique perspective and gave me some hope that maybe this could

be it after all. Not that I want this diagnosis, but we really need

a diagnosis. In my reply to Reba I explained how he had been

diagnosed by neuro as " sensory integration disfunction " for years and

because of his medical complexity (cardiac/GI) he is more difficult

to diagnose. But still, its frustrating. I just got a referral to a

pedi neuropsychologist who is in my area who may be able to help me.

Fingers crossed. Thanks for your response. Sandi--

- In , Mims Batts <mimsnj@...> wrote:

>

> Hi Sandi!

> Welcome to the group!

> I'm in the Philly area and we had a hard time getting our son

evaluated, too. Isn't that horrible to be in an area that is rich in

research, education and medical institutions, yet have a hard time

with this?

> Have you tried to get him evaluated at school? They should have

a Child Study team available to evaluate him and provide services.

Also, like Reba suggested, try a pediatric neurologist. I was going

crazy making calls and searching for someone to see my son. One call

led to another and I got him an appt with a ped neuropsychiatrist.

The doc was even a participating member on our insurance, so all it

cost for me was the copay. He was very knowledgeable, so he was able

to quickly assess our son and advise us on the spot. Finding an

ongoing counselor was a bigger challenge and we are paying for that

privately.

>

> Mims

>

> dannomom <dannomom@...> wrote:

> Hi my son is 10 and has mutliple medical issues and was

recently

> evaluated by genetics and he suggested we test him for spectrum

> disorders/asperger. This has been on my radar since he was 2

because

> of certain things I noticed in him. Strict adherence to nonsense

> routines, obsessive counting, knowing at 2 all the car brands and

> their logos, all the restaurant jingles (even thought he didnt

eat),

> hand flapping, strange spinning, odd gait, not looking in eyes,

> covering his head when overwhelmed. We did get a diangosis of

> Sensory Dysfunction Disorder when he was 2. Now I am trying to get

> him evaluated and having a very difficult time, here in Boston

area,

> testing I guess is not covered by insurance (they claim its a

school

> issue??) and costs almost $3,000. We have a lead to a doc who does

> evals so I am calling on Monday. My son goes to 5th grade next year

> at the big middle school. He has always been sort of outside

> socially, nobody plays with him, etc. This year has been an

absolute

> nightmare, teasing, bullying, etc. School has always been his love,

> he loves going, this year its not so much! I read with interest the

> posts here they sound so like my son. Any advice about getting

> diagnos, dealing with school, support, etc. is welcomed. With all

of

> his multiple needs and this AS on top of it, I am at my wits end, I

> cant stand seeing him suffer this way. Thanks Sandi

>

>

>

>

>

>

> ---------------------------------

> No Cost - Get a month of Blockbuster Total Access now. Sweet deal

for users and friends.

>

[Guest guest]

Sandi "not severe enough" -- Don't ya love it? From the description you gave, it sounds like there are plenty of issues. I know what you mean when you say that you want this diagnosis, but you don't want it. Things will be easier for you and your son if you have the concrete diagnosis. At that point, you just have to make sure the people providing the services at school are educated enough regarding the AS. Good luck with the new referral. I bet that one will be of great help. Mimsdannomom <dannomom@...> wrote: Hi MIms: Yes we have been involved in school since early intervention transition at age 3. He gets multiple services. They keep saying he "is not severe enough" I believed them even though I know/knew something wasnt right. The geneticist recently said "Hmmm, well thats why its called a spectrum isnt it?" He is a genetics specialist with a subspecialy of pedi-psychiatry, odd combo but gives him a unique perspective and gave me some hope that maybe this could be it after all. Not that I want this diagnosis, but we really need a diagnosis. In my reply to Reba I explained how he had been diagnosed by neuro as "sensory integration disfunction" for years and because of his medical complexity (cardiac/GI) he is more difficult to diagnose. But still, its frustrating. I just got a referral to a pedi neuropsychologist who is in my

area who may be able to help me. Fingers crossed. Thanks for your response. Sandi> Hi my son is 10 and has mutliple medical issues and was recently > evaluated by genetics and he suggested we test him for spectrum > disorders/asperger. This has been on my radar since he was 2 because > of certain things I noticed in him. Strict adherence to nonsense > routines, obsessive counting, knowing at 2 all the car brands and > their logos, all the restaurant jingles (even thought he didnt eat), > hand flapping, strange spinning, odd gait, not looking in eyes, > covering his head when overwhelmed. We did get a diangosis of > Sensory Dysfunction Disorder when he was 2. Now I am trying to get > him evaluated and

having a very difficult time, here in Boston area, > testing I guess is not covered by insurance (they claim its a school > issue??) and costs almost $3,000. We have a lead to a doc who does > evals so I am calling on Monday. My son goes to 5th grade next year > at the big middle school. He has always been sort of outside > socially, nobody plays with him, etc. This year has been an absolute > nightmare, teasing, bullying, etc. School has always been his love, > he loves going, this year its not so much! I read with interest the > posts here they sound so like my son. Any advice about getting > diagnos, dealing with school, support, etc. is welcomed. With all of > his multiple needs and this AS on top of it, I am at my wits end, I > cant stand seeing him suffer this way. Thanks Sandi> > > > > > >

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