New here

April 7, 2006

Tim,

Unfortunately, sometimes it takes a long time to get a firm diagnosis.

Many of these autoimmune diseases have similar symptoms, and it's hard

to sort them out. It also depends on what the blood work shows, but

that is complicated, too. You just have to be patient while the rheumy

does the detective work. I hope you have a good rheumy who will treat

whatever you have aggressively. Did he give you anything for pain to

tide you over until he finds out what you have? Be the squeaky wheel

that gets the grease. It helps to be proactive. Make sure you get a

copy of the lab results. We can help you interpret them. Good luck and

hang in there.

Sue

On Friday, April 7, 2006, at 12:33 PM, stoddardtim wrote:

> i have been having joint pain for about 18 months , started after brain

> surgery, wich i had in may of 04. did not think much about until it got

> so bad i could not take it much more.thought it was do to the meds i

> was on but not so. went to a rheumatologist , still not 100% sure if

> it is ra or maybe lupus i guess, still doing test. how long does this

> take to find out. shoulders hands and feet are the worst.

April 7, 2006

Hi Tim,

I would like to welcome you to the group. I am sorry about your

health problems. Not sure how long it can take to make a diagose.

Just don't give up, Tawny

>

> i have been having joint pain for about 18 months , started after

brain

> surgery, wich i had in may of 04. did not think much about until it

got

> so bad i could not take it much more.thought it was do to the meds i

> was on but not so. went to a rheumatologist , still not 100% sure if

> it is ra or maybe lupus i guess, still doing test. how long does

this

> take to find out. shoulders hands and feet are the worst.

>

> thanks tim

>

May 11, 2006

>

> Hello,

> I'm and I live in Brooklyn.

> I have 2 daughters, (will be 3 in July) and Brigette (just

> turned 15 months).

> About 3 months ago, I started noticing changes in Brigette's

> behavior. She was starting to avoid eye contact and not looking

when

> we called her name. Around 11 or 12 months, she first started

> babbling, but it was very rare. After awhile, she completely

stopped.

> Now she just blows raspberries and moans a lot. She's still not

> walking but she is standing on her own and furniture walking. She

> doesn't really play with toys, she just bangs them against a table

or

> whatever is near. She also likes to hold a toy or a piece of paper

> and shake it, she finds that interesting. When she's holding a

> bottle, she's slapping at it while drinking. She slaps at a lot of

> things. She's into shaking her head 'no' but she's not waving. The

> only thing she imitates is clapping. She does love to be held and

> rocked and will hold her arms out to me to pick her up. She used

to

> get excited when I came into the room and cry when I would leave

but

> she doesn't do that anymore.

> I do have fillings in my mouth that I've had

> since I was a child. I'm wondering if maybe I passed mercury to

her

> during pregnancy. This is something I read about recently doing

> research on the internet. She just had her MMR shot last Saturday

> which now that I know a lot about it, I regret her getting.

> She still smiles and laughs. She loves being tickled and held in

the

> air. I know she doesn't like her sister. has always been

very

> mean to her. When she thought we weren't looking, she would hit,

> push, kick and jerk toys away from Brigette. I can never leave

them

> alone for even a second. Usually when gets close, Brigette

> moves away or puts down the toy she was holding. Is this

> psychological?

> Another thing. Sorry, I know this is long. She was born 4 weeks

> early. She couldn't breath when she was born but they still gave

her

> to me and she stayed with me in recovery for about 45 minutes

until

> my mom noticed she kept making a grunting noise. The nurse took

her,

> checked her chest and immediately took her to NICU. She was in

NICU

> for 11 days on a ventilator. At one time, she extubated herself.

> The hospital never told me if any damage was done. I assumed there

> wasn't since they gave her a brain scan and other tests that I

don't

> really know much about.

> Anyway, we're waiting on a neuro evaluation at the Cleveland

Clinic

> and neuro tests at the University Hospitals, but that is not til

> Sept. I don't think I can handle waiting 4 months to find out

what's

> wrong with my baby. Any suggestions on who else I could try for

neuro

> tests?

> Early intervention specialist is coming next Monday. And the ped

dr.

> ordered a lead, anemia and thyroid blood test.

> What I really want her to have is her heavy metals checked. If my

> doctor won't do it, do you know how I can have this done? She's

still

> real young and I don't know if they will do it at her age.

> Has anyone had this done?

> Well, thank you for reading.

>

Hi ,

You have a lot of points here and most are one's that are shared by

many parents of a child with autims including myself.

My first point would be a question. Have you taken Bridgett for any

kind of diagnosis testing/has she been evaluated for autism? If not

try calling the Cleveland Clinic Center for Autism at the Child

Rehab hospital. I know they have worked with at least one girl who

was 18 months old and it is never too soon, you just have to make

sure you go where there is adequate education and experience. The

CCCA can point you to the right people.

Second, do not worry about your fillings unless you are

planning or might have more children. If you are fillings are

easily replaced if it gives you cause for concern. The reason I

tell you not to worry about it is because studies have been done and

show people fall into one of three areas when given a diagnosis of

autism for their child. Getting stuck in the past wondering what

could of, should of, would of happened and it does nothing to help

the matters at hand. The second group works on and lives with the

day to day gains. The third group gets stuck in worrying about the

future. According the the studies the second group had the best

prognosis and so do their children. The whole

amalgum/mercury/fillings/heavy metal debate is something that needs

to be addressed but the scientific community as a whole, no matter

on what side of the argument, believe these things would not be the

cause, but an 'exogenous insult' or something that triggers

something someone was already predisposed for. While this is not

all that comforting it does show that you could not possibly account

for everything even if something were proven to be an outside insult.

Third,the MMR vaccine. There are two ideas in the group that

believe this is one of the outside catalysts. One is it causes a

problem through 'autogenic overload', meaning too many things being

introduced at one time; the M, the M and the R. You can request you

pediatrician give monovalent forms, meaning the M, the M and the R

separatly and spread out. The second argument is the 'thimerisol'

issue. My understanding is that even though thimerisol was taken

out of vaccines it was still in the stockpiles that were still

allowed to be used and that were not exhaused until roughly 2003.

You have more to worry about from a flu vaccine or PPD (?)vaccine

which still contain mercury. There are other things that have to

watched out for such as Rhogam and some other vaccines that now call

mercury an additive instead of a preservative making things a little

muckier. You can always choose to not vaccine due to philosophical

reasons, but talk with a KNOWLEDGABLE pediatrician who has training

with children with developmental disorders. Dr. Wexberg, MD

of the Cleveland Clinic (Beachwood office) is a good choice.

Fourth, about your daughters getting along. Children with

autism spectrum disorder already have and inherant issue with

socialization. If other children give added reason to not

communicate, socialize or reachout our children are getting a double-

whammy and are being pushed further behind the developmental curve.

It would be advisable to get professional help in having your older

child take a positive interest in your younger. Having an older

sibling of the same sex is a phenominal benifit for Bridgett.

Fifth, it is almost erie. My son was given to us and did the

same thing with the grunting and it was found he was not breathing

right and had to be 'bagged' and intubated. He spent 11 days in the

NICU for that and SVT's. He was also about four weeks early due to

HELLP syndrome (an atypical form of preeclampsia). What is

interesting or maybe not is that when there is some neuro/biological

issue with a baby in eutero it is not uncommon for mothers to have

problems during birth. The babies atypical neuro/biological issue

would be the impetus and not the other way around with the atypical

delivery being the cause of a disorder. To alleivate any concerns

talk with your doctor and do some research on your own, but I

already have and have found a lot of data that bears this out.

Next, Dr. DeMio who I tell you about with mixed feelings is

someone who is very familiar with the chemistry of heavy metals and

works in this area being a parent of a child with autism himself and

a past chemistry professor and now a medical doctor. Use a good

pediatrician, like I mentioned above, to filter what someone like

Dr. DeMio tells you, you should do.

Lastly, the fact that you have such a big head start on

whatever the problem might be is to your benefit and credit.

Surround yourself with the right people on behalf of your daughter.

Interview, ask questions and get references. Keep your circle

limited to people who can benefit your family. If you take the

advice from friends, family, stranger, magazines, T.V., the

Internet, etc., etc., etc., including me as you do not know me, you

can drive yourself crazy. Weight everything you hear, pick and

choose, and be choosy about what your are going to do.

P.S. Intervention Specialists come in all flavors too and are

not always the most helpful even if they are coming from a place of

trying to help and should be well informed. You can contact

different parent/autism groups and then try to get under the wing of

someone who has a child with similiar issues as your child and is a

little farther down the same path (and still filter everything

through what's best for your family).

Good luck and God bless,

Shane

May 11, 2006

I still have to get the hang of this site. Somehow after my last

post I ended up on the page with post number one instead of the most

recent and replied to a three year old post...oh, well, better later

than never...

> Hi ,

> You have a lot of points here and most are one's that are shared

by

> many parents of a child with autims including myself.

> My first point would be a question. Have you taken Bridgett for

any

> kind of diagnosis testing/has she been evaluated for autism? If

not

> try calling the Cleveland Clinic Center for Autism at the Child

> Rehab hospital. I know they have worked with at least one girl

who

> was 18 months old and it is never too soon, you just have to make

> sure you go where there is adequate education and experience. The

> CCCA can point you to the right people.

> Second, do not worry about your fillings unless you are

> planning or might have more children. If you are fillings are

> easily replaced if it gives you cause for concern. The reason I

> tell you not to worry about it is because studies have been done

and

> show people fall into one of three areas when given a diagnosis of

> autism for their child. Getting stuck in the past wondering what

> could of, should of, would of happened and it does nothing to help

> the matters at hand. The second group works on and lives with the

> day to day gains. The third group gets stuck in worrying about

the

> future. According the the studies the second group had the best

> prognosis and so do their children. The whole

> amalgum/mercury/fillings/heavy metal debate is something that

needs

> to be addressed but the scientific community as a whole, no matter

> on what side of the argument, believe these things would not be

the

> cause, but an 'exogenous insult' or something that triggers

> something someone was already predisposed for. While this is not

> all that comforting it does show that you could not possibly

account

> for everything even if something were proven to be an outside

insult.

> Third,the MMR vaccine. There are two ideas in the group that

> believe this is one of the outside catalysts. One is it causes a

> problem through 'autogenic overload', meaning too many things

being

> introduced at one time; the M, the M and the R. You can request

you

> pediatrician give monovalent forms, meaning the M, the M and the R

> separatly and spread out. The second argument is the 'thimerisol'

> issue. My understanding is that even though thimerisol was taken

> out of vaccines it was still in the stockpiles that were still

> allowed to be used and that were not exhaused until roughly 2003.

> You have more to worry about from a flu vaccine or PPD (?)vaccine

> which still contain mercury. There are other things that have to

> watched out for such as Rhogam and some other vaccines that now

call

> mercury an additive instead of a preservative making things a

little

> muckier. You can always choose to not vaccine due to

philosophical

> reasons, but talk with a KNOWLEDGABLE pediatrician who has

training

> with children with developmental disorders. Dr. Wexberg,

MD

> of the Cleveland Clinic (Beachwood office) is a good choice.

> Fourth, about your daughters getting along. Children with

> autism spectrum disorder already have and inherant issue with

> socialization. If other children give added reason to not

> communicate, socialize or reachout our children are getting a

double-

> whammy and are being pushed further behind the developmental

curve.

> It would be advisable to get professional help in having your

older

> child take a positive interest in your younger. Having an older

> sibling of the same sex is a phenominal benifit for Bridgett.

> Fifth, it is almost erie. My son was given to us and did the

> same thing with the grunting and it was found he was not breathing

> right and had to be 'bagged' and intubated. He spent 11 days in

the

> NICU for that and SVT's. He was also about four weeks early due

to

> HELLP syndrome (an atypical form of preeclampsia). What is

> interesting or maybe not is that when there is some

neuro/biological

> issue with a baby in eutero it is not uncommon for mothers to have

> problems during birth. The babies atypical neuro/biological issue

> would be the impetus and not the other way around with the

atypical

> delivery being the cause of a disorder. To alleivate any concerns

> talk with your doctor and do some research on your own, but I

> already have and have found a lot of data that bears this out.

> Next, Dr. DeMio who I tell you about with mixed feelings is

> someone who is very familiar with the chemistry of heavy metals

and

> works in this area being a parent of a child with autism himself

and

> a past chemistry professor and now a medical doctor. Use a good

> pediatrician, like I mentioned above, to filter what someone like

> Dr. DeMio tells you, you should do.

> Lastly, the fact that you have such a big head start on

> whatever the problem might be is to your benefit and credit.

> Surround yourself with the right people on behalf of your

daughter.

> Interview, ask questions and get references. Keep your circle

> limited to people who can benefit your family. If you take the

> advice from friends, family, stranger, magazines, T.V., the

> Internet, etc., etc., etc., including me as you do not know me,

you

> can drive yourself crazy. Weight everything you hear, pick and

> choose, and be choosy about what your are going to do.

> P.S. Intervention Specialists come in all flavors too and

are

> not always the most helpful even if they are coming from a place

of

> trying to help and should be well informed. You can contact

> different parent/autism groups and then try to get under the wing

of

> someone who has a child with similiar issues as your child and is

a

> little farther down the same path (and still filter everything

> through what's best for your family).

> Good luck and God bless,

> Shane

>

May 11, 2006

Hi ,

I also live in Brooklyn and my 3 yr. old daughter was diagnosed at

the Cleveland Clinic at 17 months old. We also saw a Neurologist

there at 15 months old.

I have to run to a b-day party in a few, but you are more than

welcome to contact me by email. I know Brooklyn is very small, so we

must be very close to each other!

I have tons of info for you if you want to contact me,

> >

> > Hello,

> > I'm and I live in Brooklyn.

> > I have 2 daughters, (will be 3 in July) and Brigette

(just

> > turned 15 months).

> > About 3 months ago, I started noticing changes in Brigette's

> > behavior. She was starting to avoid eye contact and not looking

> when

> > we called her name. Around 11 or 12 months, she first started

> > babbling, but it was very rare. After awhile, she completely

> stopped.

> > Now she just blows raspberries and moans a lot. She's still not

> > walking but she is standing on her own and furniture walking.

She

> > doesn't really play with toys, she just bangs them against a

table

> or

> > whatever is near. She also likes to hold a toy or a piece of

paper

> > and shake it, she finds that interesting. When she's holding a

> > bottle, she's slapping at it while drinking. She slaps at a lot

of

> > things. She's into shaking her head 'no' but she's not waving.

The

> > only thing she imitates is clapping. She does love to be held

and

> > rocked and will hold her arms out to me to pick her up. She used

> to

> > get excited when I came into the room and cry when I would leave

> but

> > she doesn't do that anymore.

> > I do have fillings in my mouth that I've had

> > since I was a child. I'm wondering if maybe I passed mercury to

> her

> > during pregnancy. This is something I read about recently doing

> > research on the internet. She just had her MMR shot last

Saturday

> > which now that I know a lot about it, I regret her getting.

> > She still smiles and laughs. She loves being tickled and held in

> the

> > air. I know she doesn't like her sister. has always been

> very

> > mean to her. When she thought we weren't looking, she would hit,

> > push, kick and jerk toys away from Brigette. I can never leave

> them

> > alone for even a second. Usually when gets close,

Brigette

> > moves away or puts down the toy she was holding. Is this

> > psychological?

> > Another thing. Sorry, I know this is long. She was born 4 weeks

> > early. She couldn't breath when she was born but they still gave

> her

> > to me and she stayed with me in recovery for about 45 minutes

> until

> > my mom noticed she kept making a grunting noise. The nurse took

> her,

> > checked her chest and immediately took her to NICU. She was in

> NICU

> > for 11 days on a ventilator. At one time, she extubated herself.

> > The hospital never told me if any damage was done. I assumed

there

> > wasn't since they gave her a brain scan and other tests that I

> don't

> > really know much about.

> > Anyway, we're waiting on a neuro evaluation at the Cleveland

> Clinic

> > and neuro tests at the University Hospitals, but that is not til

> > Sept. I don't think I can handle waiting 4 months to find out

> what's

> > wrong with my baby. Any suggestions on who else I could try for

> neuro

> > tests?

> > Early intervention specialist is coming next Monday. And the ped

> dr.

> > ordered a lead, anemia and thyroid blood test.

> > What I really want her to have is her heavy metals checked. If

my

> > doctor won't do it, do you know how I can have this done? She's

> still

> > real young and I don't know if they will do it at her age.

> > Has anyone had this done?

> > Well, thank you for reading.