RE: Newly diagnosed daughter - new member introduction

[Guest guest]

welcome!

 

My heart goes out to you.  You and your family have faced several extremely

difficult issues. I'm sorry for the loss of your . I'm also sorry for the

recent diagnosis of Amy, but don't despair.  It sounds like you are one who does

not give up easily and I hope this group can be a support for you. There is a

lot of wisdom here. (and spelling isn't a priority)

 

Learn all you can and then you'll be comfortable with your decisions for her

care.  If there's anything I can offer is learn what may cause a flair-up in

Amy,  (stress, diet, fatigue) and live accordingly to avoid them as best you can

with such a young child. Possibly warm water physical therapy that could be like

play to her in addition to treatment.

 

The object in the ear may be stressing out her body and creating infection.  If

given antibiotics after removing the object note how it effects her joints. 

Keep us posted on your progress. I'm praying for the best outcome. Take care of

yourself too.

 

Deb

 

From: <at0m1cb10nde@...>

Subject: rheumatic Newly diagnosed daughter - new member introduction

rheumatic

Date: Saturday, November 1, 2008, 9:19 PM

Hi - my name is - I am a 32 young wife and mother of three -

Amy age 2 1/2, Charlie age 5 1/2 and who would be 8 this year

(we lost him in 2005 to Neuroblastoma)

Around the start of September this year my 2 year old daughter Amy

started complaining of leg pain - in her knees, and her walking

started being stiff - so after being sent to our local hosiptal for

tests we were given diagnosis or Reactive Arthritis ( the one after a

virus)

Her pain, and stiffness has increased since - and she needed an

increase in her pain meds (Ibuprofen and Paracetamol) and started

waking at night crying in pain - in the morning her leg is so stiff

she can't walk and as the day goes on her mobility improves

This was affecting her Right knee - but somewhere along the way moved

over to the left - and on a visit to review appointment for her

knees - after I mentioned the migration of arthritis from right to

left we were admitted for further tests - chest x-ray and leg x-rays,

Bloods and urine VMA - The diagnosis of Juvenile Chronic/Rhumatoid

Arthritis was given

We have to go back next week to meet a different doctor who

specialises in this area - to arrange meds, physio etc - so hopefully

then I will know more

I'm feeling quite bewildered and apprehensive - not knowing quite

what to expect - hoping Amy wont be affected into adulthood and

trying to adjust to the prospect of a disabled child

Amy also has another health issue - a foreign object in her right ear

that was discovered at a doctor's appointment for cold/cough, back in

May - they advised us to leave it and that it will come out by

itself - which it hasn't and we think Amy has pushed it in further,

right round the bend in her ear - so she is having a general

anaestetic next Wednesday so they can remove the offending object!

(my spelling is appauling - you'd think after having a son with

Neuroblastoma I would be able to spell these trivial little words!!)

Also - my 5 year old Son, Charlie is being assessed for ADHD and

possibly mild Aspergers - he is struggling at school, and has had a

rough first few years - his older brother was diagnosed Neuroblastoma

when he was 6 weeks old, and then when Charlie was 2 1/2 his brother

died - through the chaos Charlie has been overlooked and his speech

and development was delayed - and we've had a struggle to get him

back on track

You'd think that someone wouldn't get so much shit throwen at them -

after the last few years struggling I really wanted a happy stress

free life

Love - Devon - United Kingdom

xxxxxxxxxx

[Guest guest]

Thanks Deb

That does make sense about Amy's ear - I suspect the object has gone through

her ear drum and is holding the space so am worried about how she'll feel

when it's out

I joined an online support group when my son was first diagnosed - as well

as completing an online journal website - and I have found the support group

an invaluable source of support, brain picking and fun - I don't think I

would have coped as well without it - so decided straight away to jump in to

this group to get to know people in our boat - it's such a comfort to know

that you're not alone, and to have people to talk to about it, without them

getting lost with the science stuff

Thanks

Love

xxxxxxxxxx

From: rheumatic [mailto:rheumatic ] On Behalf

Of deb gilford

Sent: 02 November 2008 10:22

rheumatic

Subject: Re: rheumatic Newly diagnosed daughter - new member introduction

welcome!

My heart goes out to you. You and your family have faced several extremely

difficult issues. I'm sorry for the loss of your . I'm also sorry for

the recent diagnosis of Amy, but don't despair. It sounds like you are one

who does not give up easily and I hope this group can be a support for you.

There is a lot of wisdom here. (and spelling isn't a priority)

Learn all you can and then you'll be comfortable with your decisions for her

care. If there's anything I can offer is learn what may cause a flair-up in

Amy, (stress, diet, fatigue) and live accordingly to avoid them as best you

can with such a young child. Possibly warm water physical therapy that could

be like play to her in addition to treatment.

The object in the ear may be stressing out her body and creating infection.

If given antibiotics after removing the object note how it effects her

joints. Keep us posted on your progress. I'm praying for the best outcome.

Take care of yourself too.

Deb

From: <at0m1cb10nde@... <mailto:at0m1cb10nde%40.co.uk> >

Subject: rheumatic Newly diagnosed daughter - new member introduction

rheumatic <mailto:rheumatic%40>

Date: Saturday, November 1, 2008, 9:19 PM

Hi - my name is - I am a 32 young wife and mother of three -

Amy age 2 1/2, Charlie age 5 1/2 and who would be 8 this year

(we lost him in 2005 to Neuroblastoma)

Around the start of September this year my 2 year old daughter Amy

started complaining of leg pain - in her knees, and her walking

started being stiff - so after being sent to our local hosiptal for

tests we were given diagnosis or Reactive Arthritis ( the one after a

virus)

Her pain, and stiffness has increased since - and she needed an

increase in her pain meds (Ibuprofen and Paracetamol) and started

waking at night crying in pain - in the morning her leg is so stiff

she can't walk and as the day goes on her mobility improves

This was affecting her Right knee - but somewhere along the way moved

over to the left - and on a visit to review appointment for her

knees - after I mentioned the migration of arthritis from right to

left we were admitted for further tests - chest x-ray and leg x-rays,

Bloods and urine VMA - The diagnosis of Juvenile Chronic/Rhumatoid

Arthritis was given

We have to go back next week to meet a different doctor who

specialises in this area - to arrange meds, physio etc - so hopefully

then I will know more

I'm feeling quite bewildered and apprehensive - not knowing quite

what to expect - hoping Amy wont be affected into adulthood and

trying to adjust to the prospect of a disabled child

Amy also has another health issue - a foreign object in her right ear

that was discovered at a doctor's appointment for cold/cough, back in

May - they advised us to leave it and that it will come out by

itself - which it hasn't and we think Amy has pushed it in further,

right round the bend in her ear - so she is having a general

anaestetic next Wednesday so they can remove the offending object!

(my spelling is appauling - you'd think after having a son with

Neuroblastoma I would be able to spell these trivial little words!!)

Also - my 5 year old Son, Charlie is being assessed for ADHD and

possibly mild Aspergers - he is struggling at school, and has had a

rough first few years - his older brother was diagnosed Neuroblastoma

when he was 6 weeks old, and then when Charlie was 2 1/2 his brother

died - through the chaos Charlie has been overlooked and his speech

and development was delayed - and we've had a struggle to get him

back on track

You'd think that someone wouldn't get so much shit throwen at them -

after the last few years struggling I really wanted a happy stress

free life

Love - Devon - United Kingdom

xxxxxxxxxx

[Guest guest]

Hi, :

So sorry to hear of what you have been going through and I hope that you find

some effective solutions soon.

Is your daughter HLA B27 positive?  That would be important to determine whether

her treatments require a long-term approach because paracetamol, especially, can

make a B27 disease like ankylosing spondylitis much worse.  If she has a

Giardia-Reactive Arthritis she should be treated with something like Flagyl but

if she is B27 positive any ReA can eventually turn into a KRA

(Klebsiella-Reactive Arthritis), which can be treated using diet and

antibiotics.  At her early age, it is so important to not use harsh drugs and

design a programme that will heal her intestinal tract so that, perhaps in the

future, her diet need not be so strict.  Please look over the YouTube lecture

bits by Professor Alan Ebringer (Kings College, London)--type in keyword

" Ebringer " and there is one on Diet and AS and another on AS Mechanism.

The anti-inflammatory diet will exclude all flour products and supplementation

with EFAs is very important.

Wishing You and your family all the best,

From: <at0m1cb10nde@ .co. uk <mailto:at0m1cb10nd e%40. co.uk> >

Subject: rheumatic Newly diagnosed daughter - new member introduction

rheumatic@grou ps.com <mailto:rheumatic% 40groups. com>

Date: Saturday, November 1, 2008, 9:19 PM

Hi - my name is - I am a 32 young wife and mother of three -

Amy age 2 1/2, Charlie age 5 1/2 and who would be 8 this year

(we lost him in 2005 to Neuroblastoma)

Around the start of September this year my 2 year old daughter Amy

started complaining of leg pain - in her knees, and her walking

started being stiff - so after being sent to our local hosiptal for

tests we were given diagnosis or Reactive Arthritis ( the one after a

virus)

Her pain, and stiffness has increased since - and she needed an

increase in her pain meds (Ibuprofen and Paracetamol) and started

waking at night crying in pain - in the morning her leg is so stiff

she can't walk and as the day goes on her mobility improves

This was affecting her Right knee - but somewhere along the way moved

over to the left - and on a visit to review appointment for her

knees - after I mentioned the migration of arthritis from right to

left we were admitted for further tests - chest x-ray and leg x-rays,

Bloods and urine VMA - The diagnosis of Juvenile Chronic/Rhumatoid

Arthritis was given

We have to go back next week to meet a different doctor who

specialises in this area - to arrange meds, physio etc - so hopefully

then I will know more

I'm feeling quite bewildered and apprehensive - not knowing quite

what to expect - hoping Amy wont be affected into adulthood and

trying to adjust to the prospect of a disabled child

Amy also has another health issue - a foreign object in her right ear

that was discovered at a doctor's appointment for cold/cough, back in

May - they advised us to leave it and that it will come out by

itself - which it hasn't and we think Amy has pushed it in further,

right round the bend in her ear - so she is having a general

anaestetic next Wednesday so they can remove the offending object!

(my spelling is appauling - you'd think after having a son with

Neuroblastoma I would be able to spell these trivial little words!!)

Also - my 5 year old Son, Charlie is being assessed for ADHD and

possibly mild Aspergers - he is struggling at school, and has had a

rough first few years - his older brother was diagnosed Neuroblastoma

when he was 6 weeks old, and then when Charlie was 2 1/2 his brother

died - through the chaos Charlie has been overlooked and his speech

and development was delayed - and we've had a struggle to get him

back on track

You'd think that someone wouldn't get so much shit throwen at them -

after the last few years struggling I really wanted a happy stress

free life

Love - Devon - United Kingdom

xxxxxxxxxx

[Guest guest]

She was only just diagnosed this Friday gone (31st) and need to return to

hospital to get Urine VMA results and blood results - I am hoping they can

be more specific as to which type she has and other areas of her body that

it can affect - they did detect a slight heart murmour but insisted it

wasn't a concern - apparently it's common in young children and doesn't come

to anything - but I was wondering if it could be connected

Luckily Amy doesn't eat hardly any flour products, we eat mostly organic and

from scratch meals, and Amy enjoys fruit

I've already noticed that Amy's pain and stiffness improved ever so slightly

after just a 4ml increase of her Ibuprofen dose that she takes 3 times a

day, and once during the night when she normally wakes in pain, along with

5ml of paracetamol.

Amy normally can't stand or walk at all when she first wakes - and the

stiffness eases throughout the day - she still struggles to get around, and

can't bend the affected knee. I've found that baths seem to help, so I try

and give her a bath twice a day if I can

It's quite gutting the thought of her not being able to achieve things in

her childhood that she should because of this - she wants to do ballet but

I'm not sure if it's recommended or if she could do it. I hate seeing her in

pain and wish I could take it from her but I feel useless

Love

xxxxxxxxxx

From: rheumatic [mailto:rheumatic ] On Behalf

Of Merchant

Sent: 02 November 2008 16:48

rheumatic

Subject: RE: rheumatic Newly diagnosed daughter - new member introduction

Hi, :

So sorry to hear of what you have been going through and I hope that you

find some effective solutions soon.

Is your daughter HLA B27 positive? That would be important to determine

whether her treatments require a long-term approach because paracetamol,

especially, can make a B27 disease like ankylosing spondylitis much worse.

If she has a Giardia-Reactive Arthritis she should be treated with something

like Flagyl but if she is B27 positive any ReA can eventually turn into a

KRA (Klebsiella-Reactive Arthritis), which can be treated using diet and

antibiotics. At her early age, it is so important to not use harsh drugs

and design a programme that will heal her intestinal tract so that, perhaps

in the future, her diet need not be so strict. Please look over the YouTube

lecture bits by Professor Alan Ebringer (Kings College, London)--type in

keyword " Ebringer " and there is one on Diet and AS and another on AS

Mechanism.

The anti-inflammatory diet will exclude all flour products and

supplementation with EFAs is very important.

Wishing You and your family all the best,

From: <at0m1cb10nde@ .co. uk <mailto:at0m1cb10nd e%40.

co.uk> >

Subject: rheumatic Newly diagnosed daughter - new member introduction

rheumatic@grou ps.com <mailto:rheumatic% 40groups. com>

Date: Saturday, November 1, 2008, 9:19 PM

Hi - my name is - I am a 32 young wife and mother of three -

Amy age 2 1/2, Charlie age 5 1/2 and who would be 8 this year

(we lost him in 2005 to Neuroblastoma)

Around the start of September this year my 2 year old daughter Amy

started complaining of leg pain - in her knees, and her walking

started being stiff - so after being sent to our local hosiptal for

tests we were given diagnosis or Reactive Arthritis ( the one after a

virus)

Her pain, and stiffness has increased since - and she needed an

increase in her pain meds (Ibuprofen and Paracetamol) and started

waking at night crying in pain - in the morning her leg is so stiff

she can't walk and as the day goes on her mobility improves

This was affecting her Right knee - but somewhere along the way moved

over to the left - and on a visit to review appointment for her

knees - after I mentioned the migration of arthritis from right to

left we were admitted for further tests - chest x-ray and leg x-rays,

Bloods and urine VMA - The diagnosis of Juvenile Chronic/Rhumatoid

Arthritis was given

We have to go back next week to meet a different doctor who

specialises in this area - to arrange meds, physio etc - so hopefully

then I will know more

I'm feeling quite bewildered and apprehensive - not knowing quite

what to expect - hoping Amy wont be affected into adulthood and

trying to adjust to the prospect of a disabled child

Amy also has another health issue - a foreign object in her right ear

that was discovered at a doctor's appointment for cold/cough, back in

May - they advised us to leave it and that it will come out by

itself - which it hasn't and we think Amy has pushed it in further,

right round the bend in her ear - so she is having a general

anaestetic next Wednesday so they can remove the offending object!

(my spelling is appauling - you'd think after having a son with

Neuroblastoma I would be able to spell these trivial little words!!)

Also - my 5 year old Son, Charlie is being assessed for ADHD and

possibly mild Aspergers - he is struggling at school, and has had a

rough first few years - his older brother was diagnosed Neuroblastoma

when he was 6 weeks old, and then when Charlie was 2 1/2 his brother

died - through the chaos Charlie has been overlooked and his speech

and development was delayed - and we've had a struggle to get him

back on track

You'd think that someone wouldn't get so much shit throwen at them -

after the last few years struggling I really wanted a happy stress

free life

Love - Devon - United Kingdom

xxxxxxxxxx

[Guest guest]

,

Welcome to the group, I am glad you're here and you are already receiving some

informative and supportive posts.

As a mom that believed only two short years ago that she would inevitably lose

her daughter to systemic scleroderma, your story of the loss of your son hit all

too close to home. As well, I had a younger child whose needs were somewhat

negleted during the time we were fighting for Jess' life. For us the outcome

was good, Jess is now back to full health and living an active (probably too

active) life thanks to the Antibiotic Protocol treatment that is discussed on

this site.

One thing I wanted to add, you may want to also look at the postings on the

Bulliten Board for the Road Back Foundation at www.rbfbb.org. The reason I

suggest this is that there are several partipants there that are parents of JRA

patients. One, a recently diagnosed 2 year old. If you do a search on that

bboard for JRA, you can find all the related posts. I believe this information

could be helpful to you as you consider the treatment options available to get

your little girl out of pain and back to health. I know you must be overwhelmed

now, but when you can, read the book The New Arthritis Breakthrough, by Henry

Scammell. After you have a chance to educate yourself about the potential of

Antibiotic Protocol therapy, you will see that there is every reason to believe

that, with the right treatment, your daughter's condition can be resolved.

Good luck in finding the answers, they are out there.

Cheryl Ferguson

RE: rheumatic Newly diagnosed daughter - new member introduction

Hi, :

So sorry to hear of what you have been going through and I hope that you

find some effective solutions soon.

Is your daughter HLA B27 positive? That would be important to determine

whether her treatments require a long-term approach because paracetamol,

especially, can make a B27 disease like ankylosing spondylitis much worse.

If she has a Giardia-Reactive Arthritis she should be t

[Guest guest]

Hi Cheryl,

 

Long time no talk.

 

I was wondering how long it took for your daughter just to notice improvements

with the antibiotics.

 

I have been on it a year and stopped becasue I didnt notice any difference and

now I am doing the MMS hoping it can help me.

 

I wonder if I quit too early but after a year I would expect to see some

difference, dont you think?

From: Cheryl Ferguson <cgjcferguson@...>

Subject: RE: rheumatic Newly diagnosed daughter - new member introduction

rheumatic

Date: Sunday, November 2, 2008, 9:58 AM

,

Welcome to the group, I am glad you're here and you are already receiving some

informative and supportive posts.

As a mom that believed only two short years ago that she would inevitably lose

her daughter to systemic scleroderma, your story of the loss of your son hit all

too close to home. As well, I had a younger child whose needs were somewhat

negleted during the time we were fighting for Jess' life. For us the outcome was

good, Jess is now back to full health and living an active (probably too active)

life thanks to the Antibiotic Protocol treatment that is discussed on this site.

One thing I wanted to add, you may want to also look at the postings on the

Bulliten Board for the Road Back Foundation at www.rbfbb.org. The reason I

suggest this is that there are several partipants there that are parents of JRA

patients. One, a recently diagnosed 2 year old. If you do a search on that

bboard for JRA, you can find all the related posts. I believe this information

could be helpful to you as you consider the treatment options available to get

your little girl out of pain and back to health. I know you must be overwhelmed

now, but when you can, read the book The New Arthritis Breakthrough, by Henry

Scammell. After you have a chance to educate yourself about the potential of

Antibiotic Protocol therapy, you will see that there is every reason to believe

that, with the right treatment, your daughter's condition can be resolved.

Good luck in finding the answers, they are out there.

Cheryl Ferguson

RE: rheumatic Newly diagnosed daughter - new member introduction

Hi, :

So sorry to hear of what you have been going through and I hope that you

find some effective solutions soon.

Is your daughter HLA B27 positive? That would be important to determine

whether her treatments require a long-term approach because paracetamol,

especially, can make a B27 disease like ankylosing spondylitis much worse.

If she has a Giardia-Reactive Arthritis she should be t

[Guest guest]

Jess' response was atypically fast. But then again she was young and the issue

was scleroderma. Do I recall correctly do you have sjogrens? Or am I thinking

of someone else.

Cheryl

RE: rheumatic Newly diagnosed daughter - new member introduction

rheumatic

Date: Sunday, November 2, 2008, 9:58 AM

,

Welcome to the group, I am glad you're here and you are already receiving some

informative and supportive posts.

As a mom that believed only two short years ago that she would inevitably lose

her daughter to systemic scleroderma, your story of the loss of your son hit all

too close to home. As well, I had a younger child whose needs were somewhat

negleted during the time we were fighting for Jess' life. For us the outcome was

good, Jess is now back to full health and living an active (probably too active)

life thanks to the Antibiotic Protocol treatment that is discussed on this site.

One thing I wanted to add, you may want to also look at the postings on the

Bulliten Board for the Road Back Foundation at www.rbfbb.org. The reason I

suggest this is that there are several partipants there that are parents of JRA

patients. One, a recently diagnosed 2 year old. If you do a search on that

bboard for JRA, you can find all the related posts. I believe this information

could be helpful to you as you consider the treatment options available to get

your little girl out of pain and back to health. I know you must be overwhelmed

now, but when you can, read the book The New Arthritis Breakthrough, by Henry

Scammell. After you have a chance to educate yourself about the potential of

Antibiotic Protoc

[Guest guest]

Hi ,

I don't post very often mostly just read the list for treatment

ideas, but had to respond to your post. I'm really sorry to hear

what your young family has been put through. Something that stood

out is how your daughter Amy has arthritis in the knees and that is

the first sign of Lyme disease. Did you have any weird rashes or flu-

like symptoms before the arthritis started? Does your family live in

the countryside or do you hike or camp or do other outdoorsy things?

I have had Lyme disease myself so know a lot about it. It took 16

years to even get a diagnosis of it and start treatment.

Something else... you mentioned your son may have Aspergers. I was

diagnosed with Aspergers at age 35 and grew up in the time when we

were just seen as weird nerdy kids. It is tough growing up with

Aspergers and being different. The best thing you can do for him is

help him with social training, such as reading facial expressions

correctly and rehearse with him different scenerios and how to speak

with people. In the US speech therapists often can help Aspergers

people with this.

Hope this helps.

>

> Hi - my name is - I am a 32 young wife and mother of three -

> Amy age 2 1/2, Charlie age 5 1/2 and who would be 8 this

year

> (we lost him in 2005 to Neuroblastoma)

>

> Around the start of September this year my 2 year old daughter Amy

> started complaining of leg pain - in her knees, and her walking

> started being stiff - so after being sent to our local hosiptal

for

> tests we were given diagnosis or Reactive Arthritis ( the one

after a

> virus)

>

> Her pain, and stiffness has increased since - and she needed an

> increase in her pain meds (Ibuprofen and Paracetamol) and started

> waking at night crying in pain - in the morning her leg is so

stiff

> she can't walk and as the day goes on her mobility improves

>

> This was affecting her Right knee - but somewhere along the way

moved

> over to the left - and on a visit to review appointment for her

> knees - after I mentioned the migration of arthritis from right to

> left we were admitted for further tests - chest x-ray and leg x-

rays,

> Bloods and urine VMA - The diagnosis of Juvenile Chronic/Rhumatoid

> Arthritis was given

>

> We have to go back next week to meet a different doctor who

> specialises in this area - to arrange meds, physio etc - so

hopefully

> then I will know more

>

> I'm feeling quite bewildered and apprehensive - not knowing quite

> what to expect - hoping Amy wont be affected into adulthood and

> trying to adjust to the prospect of a disabled child

>

> Amy also has another health issue - a foreign object in her right

ear

> that was discovered at a doctor's appointment for cold/cough, back

in

> May - they advised us to leave it and that it will come out by

> itself - which it hasn't and we think Amy has pushed it in

further,

> right round the bend in her ear - so she is having a general

> anaestetic next Wednesday so they can remove the offending object!

> (my spelling is appauling - you'd think after having a son with

> Neuroblastoma I would be able to spell these trivial little

words!!)

>

> Also - my 5 year old Son, Charlie is being assessed for ADHD and

> possibly mild Aspergers - he is struggling at school, and has had

a

> rough first few years - his older brother was diagnosed

Neuroblastoma

> when he was 6 weeks old, and then when Charlie was 2 1/2 his

brother

> died - through the chaos Charlie has been overlooked and his

speech

> and development was delayed - and we've had a struggle to get him

> back on track

>

> You'd think that someone wouldn't get so much shit throwen at

them -

> after the last few years struggling I really wanted a happy stress

> free life

>

> Love - Devon - United Kingdom

> xxxxxxxxxx

>