New Member

[Guest guest]

Hi Alison. My name is also and we have been dealing with feeding issues

since

Owen was born- he'll be 3 in 6 weeks. His situation is a bit unique in that he

has

paralysed vocal cords hindering his ability to protect his airway when he

eats/drinks. He

got a g-tube when we was 2 months old and still relies on it for all of his

nutrition,

although he has recently become interested in 'eating' some foods. Very

exciting for us.

Owen's feeding issues are not directly related to his scoliosis, but for Owen at

least, all of

his issues are all connected in some way. Does your son have hypotonia- low

muscle

tone? I know for Owen that he doesn't have the physical stamina to eat all the

calories he

needs. Has Fraser been evaluated by a occupational/feeding therapist? They can

determine if he has low oral tone, sensory issues with food, offer suggestions,

techniques,...

I could keep writing about feeding forever, so not to repeat things you already

know,

please feel free to ask me any questions you have either privately or in the

group. If your

doctor is mentioning getting a g-tube placed so you can prevent dehydration and

help

with weight management, I would be more than happy to help try and answer any

questions you might have about it from a parents prospective. I can give you

the good

and the bad.

Take care and please feel free to ask as many questions as you want. I can also

gove you

my home phone if you'd like to chat.

& Owen

> Hi,

>

> My name is Alison and I have a son called Fraser who is 18 months old

> and has progressive infantile scoliosis and the degree of his scoliosis

> is 58 degrees. My journey has been going on for nearly 12 months now

> and it has been an uphill battle, so still learning about all of this,

> will be reading all of the posts to get information, should be

> overloaded before I know it.

>

> My question at the moment is one of Fraser's other problems which is

> his feeding or lack of it, I have such difficulty with him eating or

> drinking bottles that he ends up in hospital with dehydration and

> getting fed by a nasal gastric tube, much to his disgust. Doctors have

> no idea why this is but I keep thinking does it have anything to do

> with his scoliosis, has anyone else got the same problems or know

> someone who has?

>

> Thanks

> Alison

>

>

>

>

>

>

>

>

>

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

> It's here! Your new message!

> Get new email alerts with the free Toolbar.

>

>

[Guest guest]

Hi Alison,

I am pleased you have found the wonderful mums here. They could fill a few

text books on infantile scoliosis.

I have sent you my copy of Dr Mehta's video which should reach you tomorrow so

that you can see the correction that is possible when you harness the child's

growth and use it as a corrective force to correct scoliosis.

Of course it is not just any old cast that can work but a corectly applied

Mehta cast using the proper frame which we now have in SYdney thanks to

and Dr Angus Gray. Hopefully this will mean you can get your little Fraser in

to see Dr Gray soon so that a positive treatmetn decision can be made by someone

who has seen the condition before rather than just guessing.

You are in good hands with this group as between them they can answer any

questions you have.

Talk to you soon

Bert

Alison <gaz_ali@...> wrote:

Hi ,

Would you believe nothing is happening with Fraser, the first ortho I

saw wanted to leave it 12 months and that was fine as at this stage it

was on about 15 degrees,but within a few months it was at 30 degrees and

no-one would take responsibility and I just kept getting told leave it

and see and for someone that knew nothing about scoliosis I more or less

did that as he has other health issues that I am dealing with too, but

then I decided someone had to do something so I moved states (I

currently live in Australia) to see better medical attention and as soon

as I moved Fraser ended up being admitted to the hospital for his eating

problems and they did some more investigation in to his scoliosis, they

did another MRI and more xrays and everyone said he had a bad case but

no-one seemed to know what to do, they don't deal with many cases of

infantile scoliosis over here it seems and I haven't met an ortho yet

that has dealt with any. The last ortho I saw last week told me it

wasn't that bad and could be worse and what did I want him to do -

needless to say it wasn't what I wanted to hear, left in tears and found

this website and since have spoken to some Australian members who have

put me in touch with an ortho from another state and trying to get an

appointment with him to see if he will help me. As I said is has been

an uphill battle which really is still going on and it breaks my heart

every day to see Fraser getting worse and no-one doing anything about.

It certainly sounds like Evan is doing well, how old is he now?

Alison

Re: New Member

Hi Alison, I don't have the experience with the feeding issues, so I may

not be much help. I " m sure there is another MOM who may have dealt with

this that will chime in soon!

My question is, what are you doing for Fraser's treatment?

It seems to me that he has a pretty large curvature and is 18 m old and

if you've been on a " journey " for 12m now, hopefully you've achieved

some correction?

It's good to " meet " you and I sure hope you get the answers you were

looking for.

My son, Evan, was diagnosed at 3m old and when he went into his first

cast was at 46 degrees and now in his seventh cast is at 11.

Good luck.

and Evan

scottie039 <gaz_alibigpond (DOT) <mailto:gaz_ali%40bigpond.net.au> net.au>

wrote:

Hi,

My name is Alison and I have a son called Fraser who is 18 months old

and has progressive infantile scoliosis and the degree of his scoliosis

is 58 degrees. My journey has been going on for nearly 12 months now

and it has been an uphill battle, so still learning about all of this,

will be reading all of the posts to get information, should be

overloaded before I know it.

My question at the moment is one of Fraser's other problems which is

his feeding or lack of it, I have such difficulty with him eating or

drinking bottles that he ends up in hospital with dehydration and

getting fed by a nasal gastric tube, much to his disgust. Doctors have

no idea why this is but I keep thinking does it have anything to do

with his scoliosis, has anyone else got the same problems or know

someone who has?

Thanks

Alison

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

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[Guest guest]

Hi ,

Would you believe nothing is happening with Fraser, the first ortho I

saw wanted to leave it 12 months and that was fine as at this stage it

was on about 15 degrees,but within a few months it was at 30 degrees and

no-one would take responsibility and I just kept getting told leave it

and see and for someone that knew nothing about scoliosis I more or less

did that as he has other health issues that I am dealing with too, but

then I decided someone had to do something so I moved states (I

currently live in Australia) to see better medical attention and as soon

as I moved Fraser ended up being admitted to the hospital for his eating

problems and they did some more investigation in to his scoliosis, they

did another MRI and more xrays and everyone said he had a bad case but

no-one seemed to know what to do, they don't deal with many cases of

infantile scoliosis over here it seems and I haven't met an ortho yet

that has dealt with any. The last ortho I saw last week told me it

wasn't that bad and could be worse and what did I want him to do -

needless to say it wasn't what I wanted to hear, left in tears and found

this website and since have spoken to some Australian members who have

put me in touch with an ortho from another state and trying to get an

appointment with him to see if he will help me. As I said is has been

an uphill battle which really is still going on and it breaks my heart

every day to see Fraser getting worse and no-one doing anything about.

It certainly sounds like Evan is doing well, how old is he now?

Alison

Re: New Member

Hi Alison, I don't have the experience with the feeding issues, so I may

not be much help. I " m sure there is another MOM who may have dealt with

this that will chime in soon!

My question is, what are you doing for Fraser's treatment?

It seems to me that he has a pretty large curvature and is 18 m old and

if you've been on a " journey " for 12m now, hopefully you've achieved

some correction?

It's good to " meet " you and I sure hope you get the answers you were

looking for.

My son, Evan, was diagnosed at 3m old and when he went into his first

cast was at 46 degrees and now in his seventh cast is at 11.

Good luck.

and Evan

scottie039 <gaz_alibigpond (DOT) <mailto:gaz_ali%40bigpond.net.au> net.au>

wrote:

Hi,

My name is Alison and I have a son called Fraser who is 18 months old

and has progressive infantile scoliosis and the degree of his scoliosis

is 58 degrees. My journey has been going on for nearly 12 months now

and it has been an uphill battle, so still learning about all of this,

will be reading all of the posts to get information, should be

overloaded before I know it.

My question at the moment is one of Fraser's other problems which is

his feeding or lack of it, I have such difficulty with him eating or

drinking bottles that he ends up in hospital with dehydration and

getting fed by a nasal gastric tube, much to his disgust. Doctors have

no idea why this is but I keep thinking does it have anything to do

with his scoliosis, has anyone else got the same problems or know

someone who has?

Thanks

Alison

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

It's here! Your new message!

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[Guest guest]

Alison,

Welcome to the group. Sorry to hear that you have been getting the " run

around " with the doctors. I hope you can get in to see this next ortho soon!

Have you talked with ? She is there in Aus. really trying to get

some better things going on. Do you have any xrays or paperwork that can tell

you about Fraser's scoliosis? I don't know how it is there, but in the U.S. we

can have full access to all xrays, reports, MRI reports etc. and read them for

ourselves. The reports should tell you the degree of curve, whether there are

any problems with the bones in his back (Hemivertebrae) or other neurological

complications. Many of us have found it helpful to be very informed about what

exactly is going on so we can work with the doctors to decide what to do. Many

orthos will " wait " until surgery is unavoidable. As to food issues, I know that

can be so frustrating. I had cried many times with my girl. I know we just put

as many calories as possible into

each meal. We had to go to a speech therapist to learn. Hope to hear from you

soon that you got in to see the ortho there.

Shellie Grant

Alison <gaz_ali@...> wrote:

Hi ,

Would you believe nothing is happening with Fraser, the first ortho I

saw wanted to leave it 12 months and that was fine as at this stage it

was on about 15 degrees,but within a few months it was at 30 degrees and

no-one would take responsibility and I just kept getting told leave it

and see and for someone that knew nothing about scoliosis I more or less

did that as he has other health issues that I am dealing with too, but

then I decided someone had to do something so I moved states (I

currently live in Australia) to see better medical attention and as soon

as I moved Fraser ended up being admitted to the hospital for his eating

problems and they did some more investigation in to his scoliosis, they

did another MRI and more xrays and everyone said he had a bad case but

no-one seemed to know what to do, they don't deal with many cases of

infantile scoliosis over here it seems and I haven't met an ortho yet

that has dealt with any. The last ortho I saw last week told me it

wasn't that bad and could be worse and what did I want him to do -

needless to say it wasn't what I wanted to hear, left in tears and found

this website and since have spoken to some Australian members who have

put me in touch with an ortho from another state and trying to get an

appointment with him to see if he will help me. As I said is has been

an uphill battle which really is still going on and it breaks my heart

every day to see Fraser getting worse and no-one doing anything about.

It certainly sounds like Evan is doing well, how old is he now?

Alison

Re: New Member

Hi Alison, I don't have the experience with the feeding issues, so I may

not be much help. I " m sure there is another MOM who may have dealt with

this that will chime in soon!

My question is, what are you doing for Fraser's treatment?

It seems to me that he has a pretty large curvature and is 18 m old and

if you've been on a " journey " for 12m now, hopefully you've achieved

some correction?

It's good to " meet " you and I sure hope you get the answers you were

looking for.

My son, Evan, was diagnosed at 3m old and when he went into his first

cast was at 46 degrees and now in his seventh cast is at 11.

Good luck.

and Evan

scottie039 <gaz_alibigpond (DOT) <mailto:gaz_ali%40bigpond.net.au> net.au>

wrote:

Hi,

My name is Alison and I have a son called Fraser who is 18 months old

and has progressive infantile scoliosis and the degree of his scoliosis

is 58 degrees. My journey has been going on for nearly 12 months now

and it has been an uphill battle, so still learning about all of this,

will be reading all of the posts to get information, should be

overloaded before I know it.

My question at the moment is one of Fraser's other problems which is

his feeding or lack of it, I have such difficulty with him eating or

drinking bottles that he ends up in hospital with dehydration and

getting fed by a nasal gastric tube, much to his disgust. Doctors have

no idea why this is but I keep thinking does it have anything to do

with his scoliosis, has anyone else got the same problems or know

someone who has?

Thanks

Alison

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

It's here! Your new message!

Get new email alerts with the free Toolbar.

[Guest guest]

Welcome to the group Sherri,

Glad you are getting Jonah to a doctor. Are you seeing a pediatric

orthopedist? Where do you live? At the appointment they should be able to tell

you the Cobb angle (degree of scoliosis) and the RVAD (anything over 20 is

likely progressive). Most parents request that they schedule an MRI to look for

bone malformations and neurological factors. There is alot of basic info on the

www.infantilescoliosis.org website. There are lots of personal stories, so you

can see how different families approached the treatment of scoliosis. Also in

the files section of the CAST group is Dr. Mehta's article. Just read up on

everything!!! There is also a DVD available explaining casting. Basically you

have to find out just exactly where Jonah stands, and then move forward in

making decisions based on what you've learned. Please keep us updated on what

the diagnosis is. These parents here are great and will try to answer any

questions you might have.

Shellie Grant (Moriah's Mom)

sheriperras <sheriperras@...> wrote:

I am a mom of a 20 month old boy and we have not yet been diagnosed

with scoliosis - we have an appointment coming up. I am very scared

because it is all new and I always think the worst. Jonah is a very

healthy baby and this is the only medical issue he has besides having

a hernia operation when he was a couple months old. He seems to have

a " hump " on his back when he bends over and one side of his stomach

seems to stick out a little farther. He moves around really well and

is developing normal. Does this sound like scoliosis to you?

Scoliosis runs in the family, me and my husband have scoliosis in our

familes. Is it hereditary? I have also read that for some, it goes

away on it's own. Does anyone have info to help me learn more about

it? Please respond!!!

Worried mom....

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

TV dinner still cooling?

Check out " Tonight's Picks " on TV.

[Guest guest]

Hi,

Just wanted to Answer you, as we know all to well how you start to

question yourself and what you are doing, first thing I would say is

that we are fairly new to this PFAFA syndrome as our daughter has

suffered with reoccurring tonsillitis and high fevers. So to answer

what we know PFAFA is diagnosed by elimination so testing for all

the stuff it could be or what we know it is not. This leaves you in

the mad world of never really knowing for sure and that drives you

crazy. But not sure if you do, but we found challenging and asking

about the test that have been done ( how do you know it is not this)

as hard a question it gives you the peace of mind. We are at the

early stages of this (after 2 years) so I would be concerned if

people were jumping to conclusions but read some of the information

in the links and files (in the blue bit on the left) on this site

they help you understand what other things are often misdiagnosed.

It is always worth asking for a second opinion if you feel like

something is being missed. I have read in some of the posts on here

that taking the steroids can make the episodes closer. When we

asked about cancer and other such horror things we had a good (if

somewhat over our head) explanation of blood results and what

conclusions they draw from that.

We now keep a log of symptoms and pictures of her throat etc.(wish

we had sooner) as we found it became impossible to answer all the

questions and worry about or sick child at the same time, it also

gives you solid data to work from when reading about all the other

children on here and symptoms of other things you read about.

We operate on a we know our child basis and really just try and air

the our doctors how we feel and what we need to understand. Our

daughter is currently spiking a high temp and we are treating with

calpol (paracetamol) and Ibrobrufen every six hours this is the

first time since PFAFA diagnosed seems to be going well to date so

we will just have to see I guess. We are in the UK and it seems not

many people know to much about it so the internet has been a great

help in understanding what it is not….we are just not accepting of

anything but open to all ideas at the moment.

We hope this is some help good luck I hope improves soon.

Heath /

Ps sorry if we ramble not enough sleep recently

>

> Hi all-

>

> I am new to this group and would love to get your input/advice

on

> my situation. My son is 2 1/2 and has been having recurrent

fevers

> since October. In the beginning, the fevers were almost like

> clockwork, every 3- 3 1/2 weeks. However; most recently the

fevers

> have been closer together, on a weekly basis. A dose of predisone

> at the first sign of fever wards the fever off, but was unable to

> give the predisone this time because we weren't 100% sure that it

> was just a recurrent fever due to the short time span.

>

> Anyway, I was wondering how your doctors/pediatricians came to

the

> diagnosis of and what testing had been done prior to the

> diagnosis. With each new symptom that gets, we do more

> bloodwork and on friday had chest x-rays and a knee x-ray (as he

was

> complaining of knee pain). And with each new symptom, I almost

have

> a nervous breakdown fearing that something more serious, like

> cancer, is lurking behind the fevers.

>

> Again, thank you all in advance for your sharing your knowledge

and

> experience to help me out.

>

> ~

>

[Guest guest]

Hi Kathy!! Welcome to the group. I hope you enjoy it here. Lots of wonderful people and great advice is in the group. I am Stacie. A sahm of two boys. Brad who is 11 and Dakota who is 5. Dakota is my youngest and has High Functioning Autism.

Stacie

-- new member

HI Everybody,

My name is Kathy and I'm new to your group,I have a son

who has autism and is non verbal.Thank you for letting me join

your group.

Kathy

[Guest guest]

I noticed you said you were giving prednisone. I have not had personal

experience with it, but I have read a lot on this site that prednisone can bring

the fevers closer together. I am not saying that is what it is for sure. I am

sure that you will get responses from people that have had the same situation.

Hope that helps.

father to kylie 3 yrs old

New member

Hi all-

I am new to this group and would love to get your input/advice on

my situation. My son is 2 1/2 and has been having recurrent fevers

since October. In the beginning, the fevers were almost like

clockwork, every 3- 3 1/2 weeks. However; most recently the fevers

have been closer together, on a weekly basis. A dose of predisone

at the first sign of fever wards the fever off, but was unable to

give the predisone this time because we weren't 100% sure that it

was just a recurrent fever due to the short time span.

Anyway, I was wondering how your doctors/pediatricians came to the

diagnosis of and what testing had been done prior to the

diagnosis. With each new symptom that gets, we do more

bloodwork and on friday had chest x-rays and a knee x-ray (as he was

complaining of knee pain). And with each new symptom, I almost have

a nervous breakdown fearing that something more serious, like

cancer, is lurking behind the fevers.

Again, thank you all in advance for your sharing your knowledge and

experience to help me out.

~

[Guest guest]

Welcome Kathy, you will get alot of inspiration here from these amazing

parents. So glad you found us. How old is ? Feel free to vent, ask

questions anytime. WELCOME Toni

new member

> HI Everybody,

> My name is Kathy and I'm new to your group,I have a son

> who has autism and is non verbal.Thank you for letting me join

> your group.

> Kathy

>

>

>

>

>

>

[Guest guest]

Predisone caused our daughter's fevers to come a lot more often. We

stopped it and the fevers have gone back to their monthly cycle.

Based on what I've learned from this group. It is not uncommon.

>

>

>

> I noticed you said you were giving prednisone. I have not had

personal experience with it, but I have read a lot on this site that

prednisone can bring the fevers closer together. I am not saying

that is what it is for sure. I am sure that you will get responses

from people that have had the same situation. Hope that helps.

> father to kylie 3 yrs old

> New member

>

>

> Hi all-

>

> I am new to this group and would love to get your input/advice on

> my situation. My son is 2 1/2 and has been having recurrent

fevers

> since October. In the beginning, the fevers were almost like

> clockwork, every 3- 3 1/2 weeks. However; most recently the

fevers

> have been closer together, on a weekly basis. A dose of predisone

> at the first sign of fever wards the fever off, but was unable to

> give the predisone this time because we weren't 100% sure that it

> was just a recurrent fever due to the short time span.

>

> Anyway, I was wondering how your doctors/pediatricians came to

the

> diagnosis of and what testing had been done prior to the

> diagnosis. With each new symptom that gets, we do more

> bloodwork and on friday had chest x-rays and a knee x-ray (as he

was

> complaining of knee pain). And with each new symptom, I almost

have

> a nervous breakdown fearing that something more serious, like

> cancer, is lurking behind the fevers.

>

> Again, thank you all in advance for your sharing your knowledge

and

> experience to help me out.

>

> ~

>

>

>

>

>

>

[Guest guest]

Hi ,

I am somewhat new to the group. My son Jaeden was also diagnosed with

in December. We went through 2 years of clockwork fever every 3 to 4 weeks.

With each episode he would get worse. That last episode before I demanded to

see a specialist he started developing mouth sores also, along with the high

fever and joint pain specifically the knees. The ENT recommended a infectious

disease specialist because of his negative strep results and high fevers. We

had several blood tests to rule out lukemia.

The infectious disease specialist suspected , he said that there are no

known tests for this. He said that if the fevers responded well to prednisone

that he probably had . Sure enough his fever came as usual and within a day

after taking the prednisone the fever was gone. But he got fever again withing

two weeks. Sometimes the prednisone will stop the onset of an episode but they

will become more frequent. He still went through some joint pain but only one

mouth sore.

The doctor recommended he have his tonsils removed. He said that 80% of the

children improve with a T & A.

Jaeden had a T & A on February the 20th. He is still recovering. The ENT has

him on prednisone daily for 9 days. The T & A was horrible for him. His ENT

recommended he stay in the hospital for observation. Thank goodness for that

because he could not keep anything down, and would have dehydrated if he went

home. His specialists hopes that by having the T & A this will keep him from

having any more fever episodes and by reading some of the postings it looks like

it helped some of these children.

If this does give him some releif from the monthly fevers then it will have

been well worth it. If it does not then we will go on with more genetic testing

to see if it is some other type of fever syndrome. I hope that one day they

find all the answers.

I wish you the best with your son.

Diane

Mother to Jaeden age 5

jbrettschmidt25 <Jbrettschmidt@...> wrote:

Hi all-

I am new to this group and would love to get your input/advice on

my situation. My son is 2 1/2 and has been having recurrent fevers

since October. In the beginning, the fevers were almost like

clockwork, every 3- 3 1/2 weeks. However; most recently the fevers

have been closer together, on a weekly basis. A dose of predisone

at the first sign of fever wards the fever off, but was unable to

give the predisone this time because we weren't 100% sure that it

was just a recurrent fever due to the short time span.

Anyway, I was wondering how your doctors/pediatricians came to the

diagnosis of and what testing had been done prior to the

diagnosis. With each new symptom that gets, we do more

bloodwork and on friday had chest x-rays and a knee x-ray (as he was

complaining of knee pain). And with each new symptom, I almost have

a nervous breakdown fearing that something more serious, like

cancer, is lurking behind the fevers.

Again, thank you all in advance for your sharing your knowledge and

experience to help me out.

~

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

Get your own web address.

Have a HUGE year through Small Business.

[Guest guest]

I would stop with the family doctor and go to an immunologist. That is who our

pedi dr. referred us to. He then referred us to and ENT doctor. Best of Luck.

Leanne

sanogiles <sanogiles@...> wrote:

I am a mother of an almost 4 year-old boy (Kai) who has had recurring

fevers (101-104) for two years now. Everytime I bring him to the

doctor, they tell me that it is a virus. He sometimes complains of

stomach pain, but I had not idea that it could be related to .

My question is: how did you get doctors to take you more seriously? I

am scheduled to take Kai in to a pediatrician (he has been seeing our

family practitioner). I'm just wondering how well-versed doctors are in

. For example, if I mention it, would he even know about it? How

did I get past the " it's only a virus " rhetoric?

At this point he has had numerous chest x-rays (why???). He has also

been tested for Lyme's disease, rheumatoid arthritis, and some other

things.

Help!

Gillian

mother of Kai

[Guest guest]

> After hearing the " just a virus " for over 6 months I just went to my

pediatrician and started throwing numbers out there and made her sit with me and

review my daughter's chart and actuallly look at the number of fevers she had.

We counted together. I explained to her that it is wearing us both out. They

symptoms are ALWAYS identical and that typically my other children's bouts with

viruses did not seem like they had the exact same symptoms, nor were they so

regular. After my plea, we got the referral to the pediatric rheumatologist who

has been working with my daughter. He was a godsend. Good luck in your quest for

answers and know that you are your child's best advocate. If you get no help,

keep searching until you find the doctor who can.

Lori

mom to

[Guest guest]

I know how you feel, we all did. I finally got tired of hearing " it's a virus "

I told the doctor, I know kids don't get this many viruses and that I am her

mother and I know her best and I have to do what my conscience tells me. I went

over her head to Children's Hospital. I figured that even if they found

nothing, that I knew I had done everything possible for my child. She was not

happy with me, and barely spoke to me afterwards, but now my daughter is getting

the best treatment possible. Sometimes you have to trust you insticts.

Trish

sanogiles <sanogiles@...> wrote:

I am a mother of an almost 4 year-old boy (Kai) who has had recurring

fevers (101-104) for two years now. Everytime I bring him to the

doctor, they tell me that it is a virus. He sometimes complains of

stomach pain, but I had not idea that it could be related to .

My question is: how did you get doctors to take you more seriously? I

am scheduled to take Kai in to a pediatrician (he has been seeing our

family practitioner). I'm just wondering how well-versed doctors are in

. For example, if I mention it, would he even know about it? How

did I get past the " it's only a virus " rhetoric?

At this point he has had numerous chest x-rays (why???). He has also

been tested for Lyme's disease, rheumatoid arthritis, and some other

things.

Help!

Gillian

mother of Kai

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

Everyone is raving about the all-new beta.

[Guest guest]

Hi~

It only took about 5 months of recurrent fevers before I scheduled a

visit with my son's pediatrician when he was not sick to discuss the

situation. I had my calendar where I had mapped out the cylical

nature of his fevers. Fortunately for me, the doctors had already

known about periodic fevers and, luckily, his pediatrician had

recently attended a conference on it!!! I think that if you do not

feel that you are being taken seriously, you should find another

pediatrician or get a second opinion.

~julie

>

> I am a mother of an almost 4 year-old boy (Kai) who has had

recurring

> fevers (101-104) for two years now. Everytime I bring him to the

> doctor, they tell me that it is a virus. He sometimes complains of

> stomach pain, but I had not idea that it could be related to .

>

> My question is: how did you get doctors to take you more seriously?

I

> am scheduled to take Kai in to a pediatrician (he has been seeing

our

> family practitioner). I'm just wondering how well-versed doctors

are in

> . For example, if I mention it, would he even know about it?

How

> did I get past the " it's only a virus " rhetoric?

>

> At this point he has had numerous chest x-rays (why???). He has

also

> been tested for Lyme's disease, rheumatoid arthritis, and some

other

> things.

>

> Help!

>

> Gillian

> mother of Kai

>

[Guest guest]

I started keeping the daily log of fevers & symptoms, in an excel

spreadsheet (the chart was also a easy reference tool for the

physician). This also made it easier for me to determine that the onset

of the fever was coming-she would have over exaggerated meltdowns the

day before the fever. It was not until I was able to share this AT

EVERY VISIT that they began to take me seriously & not send me home with

the all too familiar phrase " kids get 6-8 viruses a year... " She was

61/2 at the time. She started fevering as an infant.

Our pediatrician did not know about , neither did any of the

doctors I work with, & I work a staff of 16 doctors! It was a chance

conversation with another pediatrician that led her to the diagnosis.

She recommended a tonsillectomy & we have been fever free for 13 months!

Jane Flanagan-Brown

Jane Flanagan-Brown

Contract Manager

Phone: 619-278-6169

Fax: 619-278-6568

[Guest guest]

Hi Sheri,

I am so sorry that I am just now responding to this message. I was

out of town for a while and missed some postings that I am just now

getting around to reading.

It does sound like your son could possibly have scoliosis, but there

is no way to tell until he has seen a pediatric orthopedist. The

key is to make sure you see some one who specializes in infantile

scoliosis which is hard to find! Most docs are more familiar with

adolescent scoliosis.

The first things you will need to know if he has it is whether he is

idiopathic (no known cause) or if he is congenital (meaning his

spine has some sort of abnormality such as a hemivertebrae which is

causing the scoliosis). You will then want to know his Cobb Angle

and RVAD. Docs don't always do the RVAD and you will want to know

that #. Anything around 20 and over usually means it will

progress. They will then order an MRI which is used to rule out a

tethered spinal cord which can be associated with scoliosis.

Once you have this information, you can better determine the course

of treatment. I encourage you to read Miss Mehta's article (Use of

Growth as a corrective force in the early treament of scoliosis)

which can be found in the file section of this website. You can

also get a video about the casting and early treatment from

which may be beneficial to you.

Feel free to email me any time if you would like to chat.

>

> I am a mom of a 20 month old boy and we have not yet been

diagnosed

> with scoliosis - we have an appointment coming up. I am very

scared

> because it is all new and I always think the worst. Jonah is a

very

> healthy baby and this is the only medical issue he has besides

having

> a hernia operation when he was a couple months old. He seems to

have

> a " hump " on his back when he bends over and one side of his

stomach

> seems to stick out a little farther. He moves around really well

and

> is developing normal. Does this sound like scoliosis to you?

> Scoliosis runs in the family, me and my husband have scoliosis in

our

> familes. Is it hereditary? I have also read that for some, it

goes

> away on it's own. Does anyone have info to help me learn more

about

> it? Please respond!!!

> Worried mom....

>

[Guest guest]

>

> Hi All

>

> I am the mom of two, the oldest (7)was just diagnosed with AS. He

> is very bright, and I know he will do well, but right now there

are

> some issues that I REALLY need some advice on.

>

> In addition to the AS he also has 11 food allergies and asthma.

> Part of the reason he was just diagnosed was that we always

> attributed some of the AS symptoms to the asthma meds, or the

> allergy meds...etc...

> The eye sensitivity to an eye surgery at 8 mos....

>

> The big issue for us right now is how do you discipline? His

focus

> is flashlights and will con anyone out of any flashlight. He has

> got a lot of our church family giving him little flashlights,

which

> is creating an issue because he now feels that he has a right to

any

> flashlight and has proceeded to pilfer flashlights from our church!

>

> Last Sunday he took a mini lava light from the Childrens Ministry

> director, and told her a really wild story (he is very creative

> about how it was his. We talked to him about it and he made a

very

> nice booklet about how sorry he is to give her when he saw her. I

> gave her the booklet today at Bible study. When I put the kids in

> the car to go home after Bible study, he pulled out a different

> light and told me Jeannie, the teacher gave it to him (NOT) so I

> had to run in and return that and then he shows me two pencils he

> says the teacher gave him!!!!

>

> Obviously, things are not sinking in! He also tells me that

> his " body " is telling him to do it, and his " mind " cannot control

it.

> I know this is long, but I am long winded.

>

> I have more questions, but I will address them separately.

>

> Thanks in advance for the advice

> Lee

>

it seems to me that you are in the same situation i am in with my

seven year old son who was just diagnosed in december. he loves

flashlights, and takes things without asking. his teacher just

informed us of markers and things she found in his desk that werent

his. i really wish i had some advice for you. i dont really know

what to do myself, but i hope maybe it'll help to know someone out

there is going through the same situation. hang in there.

liza

[Guest guest]

Welcome Viv!! If your child has not started some of the worse symtoms, I doubt he will. All of our children are different - none exactly alike on this list and other lists. Yes, 's book is two years old and I think all of us wanted this to be out more than it has but as you know from reading EOH, this is a HUGE political mess. Heck, Rosie O'Donnell could not have Kirby on her show but she can talk about the fact that 911 was inside job. Funny - we can talk about this on the media and not mercury in vaccines. I am hopeful though. I think the action will heat up in June depending on what the Special Master Judges have to save. If you have not read Children with Starving Brains by J. McCandless - it is a good one to get.

Kath************************************** See what's free at http://www.aol.com.

[Guest guest]

Thank you beth,

Of course I am beside myself with worry. My boy is great, he just

doesn't talk to much. He sometimes doesn't answer when I call his

name. He takes to to the fridge when he wants to eat. He likes to

watch a lot of TV. I read that TV causes autsim. But he is OK really,

maybe you are right, he is just a late-talker. I will be asking that

specialist about those vaccines.

Viv

> Hi,

> I am new to the group. I have a three year old late-talker who is

going to

> see a specialist. I know he will get an autism diagnosis, and I hate

this. I

> hate the whole thought of autism. It seems that everyone is getting a

> diagnosis of autism these days. There are even three on my street

alone! I

> have so many questions. I know that children with autism have terrible

> problems. Is my son going to start banging his head? Or loosing all his

> words? How about poop problems? He doesn't do any of these things,

but he's

> going to start that when he gets older if he has autism, right? What

about

> siezurs? I just want this to go away!!!!! Yesterday I read the

Hufington

> Post article by Kirby. He wrote his book two years ago, right?

In that

> time, there must be more and more proof of what he says is right!

So, when I

> go to ask the specialist, he's going to know all about mercury

poisoning and

> the clear connection to autism, right? I am never going to quit

until my

> darling son gets the treatment that works to fix this terrible

problem!!! I

> know this list can help me.

>

> _________________________________________________________________

> RealLiveMoms: Share your experience with Real Live Moms just like you

> http://www.reallivemoms.ca/

>

>

>

>

>

[Guest guest]

Thanks Kath!

I am so afraid my son will start on some of those terrible problems.

Kirby said on Hufington post about how all the children with

autism have diahhea flowing down onto the carpets. When I see the

specialist, I will ask about mercury poisoning. After all, autism is

so common these days, everyone must know about the cause, right?

Viv

>

> Welcome Viv!! If your child has not started some of the worse

symtoms, I

> doubt he will. All of our children are different - none exactly

alike on this list

> and other lists. Yes, 's book is two years old and I think all

of us

> wanted this to be out more than it has but as you know from

reading EOH, this

> is a HUGE political mess. Heck, Rosie O'Donnell could not have Kirby

on her

> show but she can talk about the fact that 911 was inside job. Funny

- we can talk

> about this on the media and not mercury in vaccines. I am hopeful

though. I

> think the action will heat up in June depending on what the Special

Master

> Judges have to save. If you have not read Children with Starving

Brains by J.

> McCandless - it is a good one to get.

>

> Kath

>

>

> **************************************

> See what's free at

> http://www.aol.com.

>

[Guest guest]

Hang in there! .....I do not believe TV causes autism by the way.

Sent via BlackBerry from Cingular Wireless

Re: new member

Thank you beth,

Of course I am beside myself with worry. My boy is great, he just

doesn't talk to much. He sometimes doesn't answer when I call his

name. He takes to to the fridge when he wants to eat. He likes to

watch a lot of TV. I read that TV causes autsim. But he is OK really,

maybe you are right, he is just a late-talker. I will be asking that

specialist about those vaccines.

Viv

> Hi,

> I am new to the group. I have a three year old late-talker who is

going to

> see a specialist. I know he will get an autism diagnosis, and I hate

this. I

> hate the whole thought of autism. It seems that everyone is getting a

> diagnosis of autism these days. There are even three on my street

alone! I

> have so many questions. I know that children with autism have terrible

> problems. Is my son going to start banging his head? Or loosing all his

> words? How about poop problems? He doesn't do any of these things,

but he's

> going to start that when he gets older if he has autism, right? What

about

> siezurs? I just want this to go away!!!!! Yesterday I read the

Hufington

> Post article by Kirby. He wrote his book two years ago, right?

In that

> time, there must be more and more proof of what he says is right!

So, when I

> go to ask the specialist, he's going to know all about mercury

poisoning and

> the clear connection to autism, right? I am never going to quit

until my

> darling son gets the treatment that works to fix this terrible

problem!!! I

> know this list can help me.

>

> __________________________________________________________

> RealLiveMoms: Share your experience with Real Live Moms just like you

> http://www.reallive: <http://www.reallivemoms.ca/> moms.ca/

>

>

>

>

>

[Guest guest]

the TV causing autism theory is ridiculous, so don't give that any

thought. The person who came up with that one needs shot.

there is not one ounce of biological plausibility for that nugget of genius.

and there really is not much of a chance that the specialist you will

be seeing will listen to what you say about vaccines, or that they

have read EOH (take them a copy!)

this country is still in denial on the issue.

good luck, keep reading and researching.

On 3/30/07, lisabeth.bowman@... <lisabeth.bowman@...> wrote:

> It is quite the opposite. Most don't know of the links and then will deny it.

> Sent via BlackBerry from Cingular Wireless

>

> Re: new member

>

> Thanks Kath!

> I am so afraid my son will start on some of those terrible problems.

> Kirby said on Hufington post about how all the children with

> autism have diahhea flowing down onto the carpets. When I see the

> specialist, I will ask about mercury poisoning. After all, autism is

> so common these days, everyone must know about the cause, right?

> Viv

>

>

> >

> > Welcome Viv!! If your child has not started some of the worse

> symtoms, I

> > doubt he will. All of our children are different - none exactly

> alike on this list

> > and other lists. Yes, 's book is two years old and I think all

> of us

> > wanted this to be out more than it has but as you know from

> reading EOH, this

> > is a HUGE political mess. Heck, Rosie O'Donnell could not have Kirby

> on her

> > show but she can talk about the fact that 911 was inside job. Funny

> - we can talk

> > about this on the media and not mercury in vaccines. I am hopeful

> though. I

> > think the action will heat up in June depending on what the Special

> Master

> > Judges have to save. If you have not read Children with Starving

> Brains by J.

> > McCandless - it is a good one to get.

> >

> > Kath

> >

> >

> > **************************************

> > See what's free at

> > http://www.aol.: <http://www.aol.com.> com.

> >

>

>

>

>

>

>

[Guest guest]

Tell the 911 crew that the international vaccine program was initiated in 1994 by the United Nations, the Rockefeller foundation, WHO and World Bank, among others.

That'll get them kicking.

Re: new member

Welcome Viv!! If your child has not started some of the worse symtoms, I doubt he will. All of our children are different - none exactly alike on this list and other lists. Yes, 's book is two years old and I think all of us wanted this to be out more than it has but as you know from reading EOH, this is a HUGE political mess. Heck, Rosie O'Donnell could not have Kirby on her show but she can talk about the fact that 911 was inside job. Funny - we can talk about this on the media and not mercury in vaccines. I am hopeful though. I think the action will heat up in June depending on what the Special Master Judges have to save. If you have not read Children with Starving Brains by J. McCandless - it is a good one to get. Kath**************************************See what's free at http://www.aol.com.

[Guest guest]

It is quite the opposite. Most don't know of the links and then will deny it.

Sent via BlackBerry from Cingular Wireless

Re: new member

Thanks Kath!

I am so afraid my son will start on some of those terrible problems.

Kirby said on Hufington post about how all the children with

autism have diahhea flowing down onto the carpets. When I see the

specialist, I will ask about mercury poisoning. After all, autism is

so common these days, everyone must know about the cause, right?

Viv

>

> Welcome Viv!! If your child has not started some of the worse

symtoms, I

> doubt he will. All of our children are different - none exactly

alike on this list

> and other lists. Yes, 's book is two years old and I think all

of us

> wanted this to be out more than it has but as you know from

reading EOH, this

> is a HUGE political mess. Heck, Rosie O'Donnell could not have Kirby

on her

> show but she can talk about the fact that 911 was inside job. Funny

- we can talk

> about this on the media and not mercury in vaccines. I am hopeful

though. I

> think the action will heat up in June depending on what the Special

Master

> Judges have to save. If you have not read Children with Starving

Brains by J.

> McCandless - it is a good one to get.

>

> Kath

>

>

> **************************************

> See what's free at

> http://www.aol.: <http://www.aol.com.> com.

>