Re: Ok, now I'm worried...

[Guest guest]

I'd be worried too if my child has that many symptoms. Take her to the

Dr.s and see what they say. Your her Mother and you KNOW if somethings

wrong with your child. Those gut feelings are there for a reason. No you

are not being paranoid. I've been there done that. It's been almost 30

years for me and I'm worried about my granddaughters having the disease.

If thats paranoid then we need our own club. Bre Bre has all but three of

the symptoms that you have described for your little one. After all this

time the dr. finally agrees that there is something wrong with Bre, she's

seeing a pediatric rhuematologist the last mon. of this month. Maybe then

we will have some answers. The Dr. still suspects fibromyalgia or S L E

[lupus] or J R A [juvenille rhuematoid arthritis] she said the test can

come back negative on a child untill they are older.

Here's a link for fibromyalgia:

http://caughtntheweb.com/badfibes/symptoms.html

Here's a link for lupus:

http://www.bewell.com/hic/lupus/

hugs -- Helen

> Hi all...

> Ok, so at first, I thought I was just being paranoid about my

> daughters...especially after Matty died, and I could just " see "

> disease

> in everything that my daughters (especially Gracie) did...

> But now I'm starting to really get worried. Gracie is just not

> " right " ...and I have nothing more than a gut feeling to go on, but

> it

> was my gut feeling that got Matty diagnosed in the first place.

> I've asked several people about it, and all of them tell me that I'm

> just being overprotective or paranoid because of Matty. And if

> Gracie

> just had one symptom, then I would probably think so too...but she

> doesn't. All of the medical research says that Pearson's is NOT

> inherited...that it always results from a spontaneous mutation...de

> novo, they call it. But what if....there has, in fact, been at least

> one

> reported case of inherited Pearson's syndrome...

> So here's the things that I have noticed about my Gracie...be

> honest,

> guys, and tell me if I'm worrying myself sick over nothing.

> *excessive sleeping (still around 16 hours a day--she'll be 3 in

> November)

> *oral motor apraxia (diagnosed by certified speech therapist)

> *absent gag reflex (dx'ed by same therapist)

> *slow motor development

> *mild autistic-like behaviors (walking on tip-toes, refusal to make

> eye

> contact, very withdrawn, prefers to be alone vs. group activities,

> nervous habits, i.e. rubbing fingers together and scratching her own

> skin, STRONG preference for milk over all other food and drink)

> *alternate constipation and diarrhea (it's either one or the other,

> never a normal bowel pattern)

> *alternates between eating huge amounts of food and not eating much

> at

> all

> *over-stimulates easily, very sensitive to touch

>

> Well, that's about all I can think of right off hand. Interesting

> tidbit

> though, her speech therapist also said that Gracie still suckles,

> even

> at almost 3 years of age. Very odd, she said.

> I guess if it was just one thing, I wouldn't be quite so worried,

> but

> all of her symptoms together just worry me something fierce. Of

> course,

> she's had no testing done, and no lab work done, so I really have

> nothing to go on. She did have her hemoglobin checked, about 7 or 8

> months ago, I guess, and it came back very low normal, but that's

> the

> only time it was ever checked.

> So what? Am I going crazy or is there really something to have

> checked

> out?

>

> Thanks all.

> love,

>

>

> P.s. :-) If someone could send me some info on fibromyalgia, I'd

> really

> appreciate it!!

>

[Guest guest]

Oh Diane

I am so sorry to hear about your worries with Gracie. I cannot help

you at all, but just wanted to let you know that I care.

I was wondering how Matty got diagnosed, and what were his early

symptoms? Are you seeing similar symptoms in Gracie, or different

ones?

It does seem as though Gracie has quite a few special needs. To have

a cluster of them like this, is concerning, as there may be some

underlying cause that would explain them all.

You have obviously had her pretty thoroughly checked out in the past

by a speech therapist, but I was wondering if you have had anyone

else look at her symptoms as a whole? (immunologist perhaps??) Not

sure if any of my thoughts are relevant, as I know nothing about

Pearsons, will have to do some research.

I know that you are looking for answers, and I have just asked more

questions, sorry that I cannot be of more help.

I would start searching for answers, . I disagree with those

that have said that you are being overprotective. As a mum myself, I

think that you need to go with your gut feeling that she needs to be

checked out thoroughly.

Take care *hug*

:-)

> Hi all...

> Ok, so at first, I thought I was just being paranoid about my

> daughters...especially after Matty died, and I could just " see "

disease

> in everything that my daughters (especially Gracie) did...

> But now I'm starting to really get worried. Gracie is just not

> " right " ...and I have nothing more than a gut feeling to go on, but

it

> was my gut feeling that got Matty diagnosed in the first place.

> I've asked several people about it, and all of them tell me that I'm

> just being overprotective or paranoid because of Matty. And if

Gracie

> just had one symptom, then I would probably think so too...but she

> doesn't. All of the medical research says that Pearson's is NOT

> inherited...that it always results from a spontaneous mutation...de

> novo, they call it. But what if....there has, in fact, been at

least one

> reported case of inherited Pearson's syndrome...

> So here's the things that I have noticed about my Gracie...be

honest,

> guys, and tell me if I'm worrying myself sick over nothing.

> *excessive sleeping (still around 16 hours a day--she'll be 3 in

> November)

> *oral motor apraxia (diagnosed by certified speech therapist)

> *absent gag reflex (dx'ed by same therapist)

> *slow motor development

> *mild autistic-like behaviors (walking on tip-toes, refusal to make

eye

> contact, very withdrawn, prefers to be alone vs. group activities,

> nervous habits, i.e. rubbing fingers together and scratching her own

> skin, STRONG preference for milk over all other food and drink)

> *alternate constipation and diarrhea (it's either one or the other,

> never a normal bowel pattern)

> *alternates between eating huge amounts of food and not eating much

at

> all

> *over-stimulates easily, very sensitive to touch

>

> Well, that's about all I can think of right off hand. Interesting

tidbit

> though, her speech therapist also said that Gracie still suckles,

even

> at almost 3 years of age. Very odd, she said.

> I guess if it was just one thing, I wouldn't be quite so worried,

but

> all of her symptoms together just worry me something fierce. Of

course,

> she's had no testing done, and no lab work done, so I really have

> nothing to go on. She did have her hemoglobin checked, about 7 or 8

> months ago, I guess, and it came back very low normal, but that's

the

> only time it was ever checked.

> So what? Am I going crazy or is there really something to have

checked

> out?

>

> Thanks all.

> love,

>

>

> P.s. :-) If someone could send me some info on fibromyalgia, I'd

really

> appreciate it!!

[Guest guest]

Hi Helen

Some questions for you, hope that you don't mind...

I was interested in this, why is it that they are considering FM,

SLE, or JRA?? Which of her symptoms are indicative of these? I 'spose

in a child that symptoms could easily present differently to those of

an adult? I would never have looked at s list of her daughters

symptoms and thought of these diseases. I am interested 'cause I am

battling for a diagnosis for my own daughter.

Good luck with Bre Bre's appointment, I sure know how frustrating it

is with your child having heaps of symptoms and no positive test

results. It is just too sad that some children have to start out with

these kind of problems.

:-)

> I'd be worried too if my child has that many symptoms. Take her

to the

> Dr.s and see what they say. Your her Mother and you KNOW if

somethings

> wrong with your child. Those gut feelings are there for a reason.

No you

> are not being paranoid. I've been there done that. It's been

almost 30

> years for me and I'm worried about my granddaughters having the

disease.

> If thats paranoid then we need our own club. Bre Bre has all but

three of

> the symptoms that you have described for your little one. After

all this

> time the dr. finally agrees that there is something wrong with

Bre, she's

> seeing a pediatric rhuematologist the last mon. of this month.

Maybe then

> we will have some answers. The Dr. still suspects fibromyalgia or S

L E

> [lupus] or J R A [juvenille rhuematoid arthritis] she said the test

can

> come back negative on a child untill they are older.

>

> Here's a link for fibromyalgia:

> http://caughtntheweb.com/badfibes/symptoms.html

> Here's a link for lupus:

> http://www.bewell.com/hic/lupus/

>

>

> hugs -- Helen

>

>

>

>

>

>

> > Hi all...

> > Ok, so at first, I thought I was just being paranoid about my

> > daughters...especially after Matty died, and I could just " see "

> > disease

> > in everything that my daughters (especially Gracie) did...

> > But now I'm starting to really get worried. Gracie is just not

> > " right " ...and I have nothing more than a gut feeling to go on,

but

> > it

> > was my gut feeling that got Matty diagnosed in the first place.

> > I've asked several people about it, and all of them tell me that

I'm

> > just being overprotective or paranoid because of Matty. And if

> > Gracie

> > just had one symptom, then I would probably think so too...but

she

> > doesn't. All of the medical research says that Pearson's is NOT

> > inherited...that it always results from a spontaneous

mutation...de

> > novo, they call it. But what if....there has, in fact, been at

least

> > one

> > reported case of inherited Pearson's syndrome...

> > So here's the things that I have noticed about my Gracie...be

> > honest,

> > guys, and tell me if I'm worrying myself sick over nothing.

> > *excessive sleeping (still around 16 hours a day--she'll be 3 in

> > November)

> > *oral motor apraxia (diagnosed by certified speech therapist)

> > *absent gag reflex (dx'ed by same therapist)

> > *slow motor development

> > *mild autistic-like behaviors (walking on tip-toes, refusal to

make

> > eye

> > contact, very withdrawn, prefers to be alone vs. group

activities,

> > nervous habits, i.e. rubbing fingers together and scratching her

own

> > skin, STRONG preference for milk over all other food and drink)

> > *alternate constipation and diarrhea (it's either one or the

other,

> > never a normal bowel pattern)

> > *alternates between eating huge amounts of food and not eating

much

> > at

> > all

> > *over-stimulates easily, very sensitive to touch

> >

> > Well, that's about all I can think of right off hand. Interesting

> > tidbit

> > though, her speech therapist also said that Gracie still suckles,

> > even

> > at almost 3 years of age. Very odd, she said.

> > I guess if it was just one thing, I wouldn't be quite so worried,

> > but

> > all of her symptoms together just worry me something fierce. Of

> > course,

> > she's had no testing done, and no lab work done, so I really have

> > nothing to go on. She did have her hemoglobin checked, about 7

or 8

> > months ago, I guess, and it came back very low normal, but that's

> > the

> > only time it was ever checked.

> > So what? Am I going crazy or is there really something to have

> > checked

> > out?

> >

> > Thanks all.

> > love,

> >

> >

> > P.s. :-) If someone could send me some info on fibromyalgia, I'd

> > really

> > appreciate it!!

> >

[Guest guest]

Dear ,

You've been concerned about Gracie for awhile now. How is she doing at the moment?

"But now I'm starting to really get worried. Gracie is just not"right"...and I have nothing more than a gut feeling to go on, but itwas my gut feeling that got Matty diagnosed in the first place."

Always trust your instincts - they never lead you astray. Its better to get her fully checked out to find nothing then shrug it off and live to regret not doing anything sooner.

"All of the medical research says that Pearson's is NOTinherited...that it always results from a spontaneous mutation...denovo, they call it. But what if....there has, in fact, been at least onereported case of inherited Pearson's syndrome..."

Considering we pass on our genetics I dont know how any dr could ever fully say that they are 100% sure it cannot be genetically passed down, or that the child does not have a genetic predisposition to develop it.

"So here's the things that I have noticed about my Gracie...be honest,guys, and tell me if I'm worrying myself sick over nothing.*excessive sleeping (still around 16 hours a day--she'll be 3 inNovember)"

Well I dont know how much a 3 year old sleeps. Is this normal or not for a 3 year old?

*oral motor apraxia (diagnosed by certified speech therapist)*absent gag reflex (dx'ed by same therapist)

Obviously you are not being over sensitive if these have been diagnosed by a therapist.

*mild autistic-like behaviors (walking on tip-toes, refusal to make eyecontact, very withdrawn, prefers to be alone vs. group activities,nervous habits, i.e. rubbing fingers together and scratching her ownskin,

The one thing I thought of is that perhaps she is in a delayed grieving stage from Matty's passing on? This behaviour is also typical of anorexic people. That is caused usually by a condition called "Confirmed Negativity Condition" which is basically where she feels everyones pain and blames herself. So she retreats. The behaviour you described fits the profile perfectly. She does not have to have an eating disorder to have this - especially at three. But I do know that many kids do get it as they feel deeply and blame themselves for all the pain that they pick up from everyone around them.

Scratching her skin - is she allergic?

"STRONG preference for milk over all other food and drink)*alternate constipation and diarrhea (it's either one or the other,never a normal bowel pattern)"

If she is dairy allergic then she will have bowel problems from the intolerance. Alot of people with food allergies (myself included) often crave the very thing that is bad for you, its like an addiction. I would suggest taking her off dairy products and changing it for soy. She might not like it for a while, and may go through withdrawls which can make her feel sick for 48 hours or so, but it could be as simple as the dairy giving her problems.

There have even been correlations with people who are schitzophrenic and wheat allergies. Take them off the wheat and the schitzophrenia goes completely. So perhaps take her off dairy or get her allergies tested? Just a thought hon.

Either way, remember its better to get her fully checked out and know that there is nothing wrong then to do nothing.

*hug*

Hang in there angel.

Love Aisha.

[Guest guest]

Bre Bre has been having problems sinse she was born.

She has had bowl problems from day one. She is vomitting

at least once or twice a week. Which has calmed down some

as it was 4 - 5 times a week. Her small motor skills are behind.

She has dyspraxia of speech. She has pains all through out

her body now. She doesn't want anyone to touch her. She

hurts from that. Her little fingers are getting harder to move.

She can not run and play as much as her sisters without

becoming too tired. If they are running she will stop after just

a few min's. Hard for her to catch her breath. She gags all the

time. She's constantly getting a drink as it hurts,[meaning her throat].

She doesn't drink that much, just has to keep her mouth

moist. She used to sleep about 12-14 hours, now she has a hard time

sleeping. She will wake up in the night screaming as her legs or

arms are hurting her so bad. This hurting started when she was just

two years old. She just turned five years old and NOW they

realize something is wrong with her. I've been telling her pediatrician

that all this time and her answer to me was, it's just growing

pains. She also has blood and protein in her urine and they

don't see anything wrong with the kidneys, so thats a sit

and watch game right now. She see's the kidney dr. day after

she see's the pediatric rhuematologist. The dr. is looking strongly

at SLE[lupus] as she shows signs of it but the test are fine.

I have it, My grandmother had it also. We also have two

of my nephews that have JRA, one has muskeraler dystropy.

I have the fibro and so does my son. So she is looking into

all of it now. As she always has a low grade temp. I know there are

other things but I just can't think right now. Thanks for asking

about her. What are they looking for in your little one?

hugs Helen

> Hi Helen

> Some questions for you, hope that you don't mind...

> I was interested in this, why is it that they are considering FM,

> SLE, or JRA?? Which of her symptoms are indicative of these? I

> 'spose

> in a child that symptoms could easily present differently to those

> of

> an adult? I would never have looked at s list of her daughters

> symptoms and thought of these diseases. I am interested 'cause I am

> battling for a diagnosis for my own daughter.

> Good luck with Bre Bre's appointment, I sure know how frustrating it

>

> is with your child having heaps of symptoms and no positive test

> results. It is just too sad that some children have to start out

> with

> these kind of problems.

> :-)

>

>

>

> > I'd be worried too if my child has that many symptoms. Take her

>

> to the

> > Dr.s and see what they say. Your her Mother and you KNOW if

> somethings

> > wrong with your child. Those gut feelings are there for a reason.

>

> No you

> > are not being paranoid. I've been there done that. It's been

> almost 30

> > years for me and I'm worried about my granddaughters having the

> disease.

> > If thats paranoid then we need our own club. Bre Bre has all but

> three of

> > the symptoms that you have described for your little one. After

> all this

> > time the dr. finally agrees that there is something wrong with

> Bre, she's

> > seeing a pediatric rhuematologist the last mon. of this month.

> Maybe then

> > we will have some answers. The Dr. still suspects fibromyalgia or

> S

> L E

> > [lupus] or J R A [juvenille rhuematoid arthritis] she said the

> test

> can

> > come back negative on a child untill they are older.

> >

> > Here's a link for fibromyalgia:

> > http://caughtntheweb.com/badfibes/symptoms.html

> > Here's a link for lupus:

> > http://www.bewell.com/hic/lupus/

> >

> >

> > hugs -- Helen

> >

> >

> >

> >

> >

> >

> > > Hi all...

> > > Ok, so at first, I thought I was just being paranoid about my

> > > daughters...especially after Matty died, and I could just " see "

> > > disease

> > > in everything that my daughters (especially Gracie) did...

> > > But now I'm starting to really get worried. Gracie is just not

> > > " right " ...and I have nothing more than a gut feeling to go on,

> but

> > > it

> > > was my gut feeling that got Matty diagnosed in the first place.

> > > I've asked several people about it, and all of them tell me

> that

> I'm

> > > just being overprotective or paranoid because of Matty. And if

> > > Gracie

> > > just had one symptom, then I would probably think so too...but

> she

> > > doesn't. All of the medical research says that Pearson's is NOT

> > > inherited...that it always results from a spontaneous

> mutation...de

> > > novo, they call it. But what if....there has, in fact, been at

> least

> > > one

> > > reported case of inherited Pearson's syndrome...

> > > So here's the things that I have noticed about my Gracie...be

> > > honest,

> > > guys, and tell me if I'm worrying myself sick over nothing.

> > > *excessive sleeping (still around 16 hours a day--she'll be 3

> in

> > > November)

> > > *oral motor apraxia (diagnosed by certified speech therapist)

> > > *absent gag reflex (dx'ed by same therapist)

> > > *slow motor development

> > > *mild autistic-like behaviors (walking on tip-toes, refusal to

> make

> > > eye

> > > contact, very withdrawn, prefers to be alone vs. group

> activities,

> > > nervous habits, i.e. rubbing fingers together and scratching

> her

> own

> > > skin, STRONG preference for milk over all other food and drink)

> > > *alternate constipation and diarrhea (it's either one or the

> other,

> > > never a normal bowel pattern)

> > > *alternates between eating huge amounts of food and not eating

> much

> > > at

> > > all

> > > *over-stimulates easily, very sensitive to touch

> > >

> > > Well, that's about all I can think of right off hand.

> Interesting

> > > tidbit

> > > though, her speech therapist also said that Gracie still

> suckles,

> > > even

> > > at almost 3 years of age. Very odd, she said.

> > > I guess if it was just one thing, I wouldn't be quite so

> worried,

> > > but

> > > all of her symptoms together just worry me something fierce. Of

> > > course,

> > > she's had no testing done, and no lab work done, so I really

> have

> > > nothing to go on. She did have her hemoglobin checked, about 7

> or 8

> > > months ago, I guess, and it came back very low normal, but

> that's

> > > the

> > > only time it was ever checked.

> > > So what? Am I going crazy or is there really something to have

> > > checked

> > > out?

> > >

> > > Thanks all.

> > > love,

> > >

> > >

> > > P.s. :-) If someone could send me some info on fibromyalgia,

> I'd

> > > really

> > > appreciate it!!

> > >

>

>

[Guest guest]

My 12 yr old would have violent episodes,uncontrollable movements, make

" animal noises " (quacking, barking). Drs could not figure out why. I started

keeping track of what was going on when the episodes happened. Turns out,

every time she ate chocolate or red food coloring, she had one. I cut these

2 things out of her diet & the episodes stopped. I can always tell when she

has had forbidden chocolate because of her behavior. Dr says allergies won't

cause this but I don't believe it.

ne

************************************************************

If you can't be a good example, then you'll just have to be a horrible

warning.

ne Sullivan

************************************************************

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

Many doctors know nothing about diet. It almost seems like they are afraid they will go out of business, if they admit how important diet is. It can affect all of your body systems.

Lee

susanne Sullivan <ninjagrandma@...> wrote:

My 12 yr old would have violent episodes,uncontrollable movements, make "animal noises" (quacking, barking). Drs could not figure out why. I started keeping track of what was going on when the episodes happened. Turns out, every time she ate chocolate or red food coloring, she had one. I cut these 2 things out of her diet & the episodes stopped. I can always tell when she has had forbidden chocolate because of her behavior. Dr says allergies won't cause this but I don't believe it.ne

[Guest guest]

Know what. i just remembered an article i red in my Womans weekly about a little girl who had seizures. Her mother put her on a special diet that she red about on the internet. The little girl doesnt have seizures any more.

If you want i can try and find the article.

Melinda

Re: Re: Ok, now I'm worried...

Many doctors know nothing about diet. It almost seems like they are afraid they will go out of business, if they admit how important diet is. It can affect all of your body systems.

Lee

susanne Sullivan <ninjagrandma@...> wrote:

My 12 yr old would have violent episodes,uncontrollable movements, make " animal noises " (quacking, barking). Drs could not figure out why. I started keeping track of what was going on when the episodes happened. Turns out, every time she ate chocolate or red food coloring, she had one. I cut these 2 things out of her diet & the episodes stopped. I can always tell when she has had forbidden chocolate because of her behavior. Dr says allergies won't cause this but I don't believe it.ne

[Guest guest]

susanne Sullivan wrote:

My 12 yr old would have violent episodes,uncontrollable

movements, make

"animal noises" (quacking, barking). Drs could not figure out why.

I started

keeping track of what was going on when the episodes happened. Turns

out,

every time she ate chocolate or red food coloring, she had one. I cut

these

2 things out of her diet & the episodes stopped. I can always tell

when she

has had forbidden chocolate because of her behavior. Dr says allergies

won't

cause this but I don't believe it.

ne

ne-

I just

joined another list at egroups that is all about red dye problems,

just like those you report about your child....

It is

called NoRedDyeegroups

if you want to check it out.

As for

allergies not causing this... it is a major sign!

Behavioral

problems are a big sign of a head injury. The first sign of not enough

oxygen going to your brain is behavioral, and confusion.

At the

first sign of trouble... whether it be stress, allergies, trauma, whatever.

Oxygen goes to your biggest muscles, which are in your legs... it is the

"fight or flight" response. So your brain is the first to lose oxygen...

I can

turn into quite the BITCH when my allergies are set off!

Anne

[Guest guest]

Melinda,

Sounds to me like you're talking about the ketogenic diet. It cuts

out all the carbohydrates in your diet and makes your body burn fats to

make energy. This diet has been proven helpful in some cases of

epilepsy/ seizure activity...BUT...as we've said before on this list, It

is EXTREMELY important to discuss this with your doctor first.

love,

Sprague wrote:

> Know what. i just remembered an article i red in my Womans weekly

> about a little girl who had seizures. Her mother put her on a special

> diet that she red about on the internet. The little girl doesnt have

> seizures any more.If you want i can try and find the article.Melinda

>

> Re: Re: Ok, now I'm worried...

>

>

>

> Many doctors know nothing about diet. It almost seems like

> they are afraid they will go out of business, if they admit

> how important diet is. It can affect all of your body

> systems.

>

> Lee

>

> susanne Sullivan <ninjagrandma@...> wrote:

>

> My 12 yr old would have violent

> episodes,uncontrollable movements, make

> " animal noises " (quacking, barking). Drs could not

> figure out why. I started

> keeping track of what was going on when the

> episodes happened. Turns out,

> every time she ate chocolate or red food coloring,

> she had one. I cut these

> 2 things out of her diet & the episodes stopped. I

> can always tell when she

> has had forbidden chocolate because of her

> behavior. Dr says allergies won't

> cause this but I don't believe it.

> ne

>

>

>

>

>

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

>

[Guest guest]

...Hi again...getting thru some mail....Re:Gracie follow your instincts!!

Get your answers!!< Gracie is just not " right " ...and I have nothing more than a

gut feeling to go on, but it was my gut feeling that got Matty diagnosed in the

first place.>

> <I've asked several people about it, and all of them tell me that I'm

> just being overprotective or paranoid because of Matty.> Sorry about what

others think... a mother knows best...my best friend lost a child....at age 4

months...the dR. said later he should have listened to her more...because

mother's know best!!!!Bottom line -they

> do!!!

>

> <*excessive sleeping (still around 16 hours a day--she'll be 3 in

> November)> My daughter, Tessa will be 3 on sept 23rd....she sleeps approx

10-12 hours total....without a nap...it's 12 ...with a nap...it's 10...all

children are different...but....many people energize while they sleep...she

that's what she could be doing! Does she

> eat foods that could make her sleepy? Does she take any supplements? Any

essential fatty acids? Would you like some info on autism and nutrition?

> <*oral motor apraxia,absent gag reflex,*slow motor development

> *mild autistic-like behaviors>....that's enough to be concerned about...look

for your answers and dont let them away without giving you answers ...and giving

you ideas to help!! was she always like this...or could it be reactions to

vacines???? Do you follow much

> about vaccines and reported damage?

Re:milk...and autism......remind me to send you an interesting article...ok!!!

> Sheena:)

[Guest guest]

Hi Sheena.

Yes, I know quite a bit about vaccines and disease...many cases of mito

are only confirmed after negative reactions to vaccines, some seem to

make mitochondrial disease worse. We didn't give Matty any live vaccines

for this reason.

I know that casein-free/ gluten-free diets work wonders for some

autistic kids...but if you have anything interesting to send, I would

love to see it!

Thanks!

healthyu2000 wrote:

> ...Hi again...getting thru some mail....Re:Gracie follow your

> instincts!! Get your answers!!< Gracie is just not " right " ...and I have

> nothing more than a gut feeling to go on, but it was my gut feeling

> that got Matty diagnosed in the first place.>

>

> > <I've asked several people about it, and all of them tell me that

> I'm

> > just being overprotective or paranoid because of Matty.> Sorry about

> what others think... a mother knows best...my best friend lost a

> child....at age 4 months...the dR. said later he should have listened

> to her more...because mother's know best!!!!Bottom line -they

> > do!!!

>

> >

> > <*excessive sleeping (still around 16 hours a day--she'll be 3 in

> > November)> My daughter, Tessa will be 3 on sept 23rd....she sleeps

> approx 10-12 hours total....without a nap...it's 12 ...with a

> nap...it's 10...all children are different...but....many people

> energize while they sleep...she that's what she could be doing! Does

> she

> > eat foods that could make her sleepy? Does she take any supplements?

> Any essential fatty acids? Would you like some info on autism and

> nutrition?

>

> > <*oral motor apraxia,absent gag reflex,*slow motor development

> > *mild autistic-like behaviors>....that's enough to be concerned

> about...look for your answers and dont let them away without giving

> you answers ...and giving you ideas to help!! was she always like

> this...or could it be reactions to vacines???? Do you follow much

> > about vaccines and reported damage?

>

> Re:milk...and autism......remind me to send you an interesting

> article...ok!!!

>

> > Sheena:)

>

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[Guest guest]

Hi

Sorry to hear you are worried about Gracie, can't offer any advice, but I am sure others have been able to help you out in that area.

Just wanted to write and say that you know what is best for Gracie and it is not paranoid to be worried about her health, you love her and I would expect nothing less than for you to check out anything that you may thing would be cause for concern.

If you are worried than see what you can find out, the worse that can happen is that you will be wrong and she has no medical conditions, there is nothing wrong with being worried.

Don't know if this is coming out right, I just want to say if you are worried than don't let other people tell you you are paranoid you know Gracie the best.

I don't want you to worry, I want you to be happy and worry free, but if you are worried than you shouldn't have to waste your worrying energy on people who think you are overprotective!!

Well if none of that made any sense have a cuppa coffee, I'll grab some chockie and I'll try again.

Take care hon

Love ya

Nerys

[Guest guest]

hi .. .....they say chronic tiredness can be a side effect of removal of

tonsils...usually swollen tonsils are a sign that the body is fighting an

infection...it may not be so bad that there is a fever but nonetheless it can be

an infection or chronic low

immunity! Does she take any antioxidants to build her immunity???? How are her

bowel movements? Does she go regularly...as in 2-3 times per day?????

Sheena

>

> You asked about my little one...My " little one " is 11 yrs old :-)

> She was recently assessed for an AI, they decided that nothing

> relevant came back with this, (although her ANA was 1/80) so she is

> having a sleep study done in October to see if there is something

> going on there. I have been worried about her since she was about

> five yrs old. She never had as much energy as she should, suffered

> from chronic daily migraines (these finally all but stopped when she

> got her tonsils out about a year ago, like magic. She did have

> breathing problems with her enormous tonsils)