can anyone help

[Guest guest]

Hello Celeste and welcome! I wish i had a suggestion but i don't even know

what a spinal tap would do. My heart goes out to you..Do you by any chance

have a shriners near you...and even if you don't have one close they will

help with transportation..Maybe a different rheumatologist is needed with

some different ideas.

What type of jra was your son diagnosed with? My daughter who will be 17

next month was diagnosed in 89' at the age of 4 with polyarticular.

Your son is a tiny one..don't worry..my friend use to say..dynamite comes in

small packages..hang in there..

You and your son are in my thoughts and prayers...

Good luck

karen(tab16...poly)

From: " cassiee23 " <cassiee23@...>

Reply-

Subject: can anyone help

Date: Mon, 25 Feb 2002 01:57:51 -0000

Hi my name is Celeste and my son Camron is 3 now he was diagnosed

with JRA when he was 10 months. He has been on methotrexate, embrel,

pediapred, motrin and we have tried Remecad but nothing has worked.

The only thing that has managed to keep the arthritis under control

is the pediapred. He hasn't grown and still only weights about

20lbs. He is delayed but in school. I don't know what to do and I

am at my wits end, his rheumatologist wants to do a spinal tap and I

was wondering if that was a good idea. I live in NM and have to go

to Denver, CO to see the rheumatologist due to the fact that NM

doesn't have a pediatric rheumatologist. If anyone has any

suggestions I would greatly appriciate it.

Celeste Pettit

cassiee23@...

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Hi celeste,

My son was diagnosed with Systemic onset JRA when he

was 9 & 1/2 months old.He is now 1 yr 5 months old.I

am able to relate to ur son's condition becoz even my

son has not grown a bit since then.His steroids r

being tapered & his doc says that he will grow as the

steroids r reduced.Actually after reading abt ur son,i

am quite worried abt my child.

ly i do not know what a spinal tap is about?But I

think u cud take a second opinion abt it anyway.He is

presently on how many mgs of pred?I also remember

reading abt some child being given growth hormones.

--- cassiee23 <cassiee23@...> wrote:

> Hi my name is Celeste and my son Camron is 3 now he

> was diagnosed

> with JRA when he was 10 months. He has been on

> methotrexate, embrel,

> pediapred, motrin and we have tried Remecad but

> nothing has worked.

> The only thing that has managed to keep the

> arthritis under control

> is the pediapred. He hasn't grown and still only

> weights about

> 20lbs. He is delayed but in school. I don't know

> what to do and I

> am at my wits end, his rheumatologist wants to do a

> spinal tap and I

> was wondering if that was a good idea. I live in NM

> and have to go

> to Denver, CO to see the rheumatologist due to the

> fact that NM

> doesn't have a pediatric rheumatologist. If anyone

> has any

> suggestions I would greatly appriciate it.

> Celeste Pettit

> cassiee23@...

>

>

__________________________________________________

[Guest guest]

Celeste,

I recall that my son had a spinal tap years ago as one of the final stages

of his diagnosis of JRA. I think it was to check the spinal fluid for the

prescence of other infections? If you never went through this process before

then perhaps that is why they want to perform the test now?

Either way, I'm sure that I'm right in suggesting that you try to see your

Ped. Rheum. as this disease does require special attention and clearly your

son needs all the help he can get. My son (diagnosed at 9 months, now 7

years) has been on Pred for most of his life. He's small but I believe that

the disease itself can stunt growth as well as the pred.

Best wishes, I sincerely hope things get better soon.

Oliver

can anyone help

Hi my name is Celeste and my son Camron is 3 now he was diagnosed

with JRA when he was 10 months. He has been on methotrexate, embrel,

pediapred, motrin and we have tried Remecad but nothing has worked.

The only thing that has managed to keep the arthritis under control

is the pediapred. He hasn't grown and still only weights about

20lbs. He is delayed but in school. I don't know what to do and I

am at my wits end, his rheumatologist wants to do a spinal tap and I

was wondering if that was a good idea. I live in NM and have to go

to Denver, CO to see the rheumatologist due to the fact that NM

doesn't have a pediatric rheumatologist. If anyone has any

suggestions I would greatly appriciate it.

Celeste Pettit

cassiee23@...

[Guest guest]

Hi well every child is different and I prey that your

child doesn't go through what my son is now. He takes

1.5 cc 4x's a day of the 15mg of the prelone they just

changed it today from the pediapred. We went to the

doctor and now he has strep so we are taking penicilin

also. What else is your son taking? My son also has

the systemic onset JRA he started out with a small

dosage of steroids but over the years we have had to

increase it and then lower it and so on just depending

on his status of the day. If you have any questions

feel free to email me and I will try to help as much

as I can but I too as still learning a great deal

about this disease.

Celeste

__________________________________________________

[Guest guest]

Hi and thank you for the welcome. I am glad

there are people I can talk to about my son. The only

other place that I can go would be Dallas Tx and that

is even farther away but the rheumy is consulting

others about my son on what to do next. My son has

systemic onset JRA. The doctor believes that

something else may be wrong with him because he didn't

respond to the rhemecaid or embrel therapy so he

figures that the spinal tap will be able to tell.

Thank you for the prayers I will accept any that comes

my way.

Celeste

__________________________________________________

[Guest guest]

hi,

iam a rheumatologist,and was shocked to hear that

rheumy are going to tap the spinal fluid from ur son.

Listen there are several drugs available nowadays to

treat JCRA,but the probelem is that we cannot predict

beforehand that which drug gonna help our patient,its

just the experiense and proper dosage that we offer to

our dear patients,to see the response of the DMARD

given,the rule of thumb is to wait for 3 monts

atleast,as these drugs are long acting,and start there

action slowly,enbrel,Infliximab are newer agent

relatively,but there cost,toxic sideefffects,are the

hinderense,any way,if you just tell be what are the

joints that are infalmmed in your son case,what were

the drugs given to him ,dosage,duration,i think iam

able to give you my opinion,

regards

Ahmad Iqbal Mirza

--- celeste <cassiee23@...> wrote:

> Hi and thank you for the welcome. I am glad

> there are people I can talk to about my son. The

> only

> other place that I can go would be Dallas Tx and

> that

> is even farther away but the rheumy is consulting

> others about my son on what to do next. My son has

> systemic onset JRA. The doctor believes that

> something else may be wrong with him because he

> didn't

> respond to the rhemecaid or embrel therapy so he

> figures that the spinal tap will be able to tell.

> Thank you for the prayers I will accept any that

> comes

> my way.

> Celeste

>

>

> __________________________________________________

>

[Guest guest]

Thank you for your interest, my son was on embrel and

methotrexate for about a year and did not respond to

it and about 3 months ago we tried the rhemecaid and

he had an allergic reaction to it. The rheumy

believes that the spinal tap will uncover something

else that may be wrong with him because of his delays

and unresponsiveness to any of the medicines. If you

have any other suggestions I am open to them. Because

of my sons age my rheumy is afraid to try most

medicines.

Celeste

--- ahmad mirza <ahiqmi@...> wrote:

> hi,

> iam a rheumatologist,and was shocked to hear that

> rheumy are going to tap the spinal fluid from ur

> son.

> Listen there are several drugs available nowadays to

> treat JCRA,but the probelem is that we cannot

> predict

> beforehand that which drug gonna help our

> patient,its

> just the experiense and proper dosage that we offer

> to

> our dear patients,to see the response of the DMARD

> given,the rule of thumb is to wait for 3 monts

> atleast,as these drugs are long acting,and start

> there

> action slowly,enbrel,Infliximab are newer agent

> relatively,but there cost,toxic sideefffects,are the

> hinderense,any way,if you just tell be what are the

> joints that are infalmmed in your son case,what were

> the drugs given to him ,dosage,duration,i think iam

> able to give you my opinion,

> regards

> Ahmad Iqbal Mirza

> --- celeste <cassiee23@...> wrote:

> > Hi and thank you for the welcome. I am glad

> > there are people I can talk to about my son. The

> > only

> > other place that I can go would be Dallas Tx and

> > that

> > is even farther away but the rheumy is consulting

> > others about my son on what to do next. My son

> has

> > systemic onset JRA. The doctor believes that

> > something else may be wrong with him because he

> > didn't

> > respond to the rhemecaid or embrel therapy so he

> > figures that the spinal tap will be able to tell.

> > Thank you for the prayers I will accept any that

> > comes

> > my way.

> > Celeste

> >

> >

> > __________________________________________________

> >

[Guest guest]

Hello Celeste, Rusty Limbs and my two cents worth, being that your son was on embrel andmethotrexate for about a year and did not respond to, allergic reaction to rhemecaid, then however frightening it truly is, the thought of a spinal tap, especially for your little boy. It may weight out to be, the most prudent course of action in order to determine what is causing your sons problems and the fact that he is not responding to the meds.

Yes I know all the risks involved in this proceedjure, as in any invasive procedure there will and is always risks, so get all the advise you can gather before you decide what is the best course of action in determining treatment for your son.

On Tue, 26 Feb 2002 07:08:31 -0800 (PST) celeste <cassiee23@...> writes:

Thank you for your interest, my son was on embrel andmethotrexate for about a year and did not respond toit and about 3 months ago we tried the rhemecaid andhe had an allergic reaction to it. The rheumybelieves that the spinal tap will uncover somethingelse that may be wrong with him because of his delaysand unresponsiveness to any of the medicines. If youhave any other suggestions I am open to them. Becauseof my sons age my rheumy is afraid to try mostmedicines. Celeste--- ahmad mirza <ahiqmi@...> wrote:> hi,> iam a rheumatologist,and was shocked to hear that> rheumy are going to tap the spinal fluid from ur> son.> Listen there are several drugs available nowadays to> treat JCRA,but the probelem is that we cannot> predict> beforehand that which drug gonna help our> patient,its> just the experiense and proper dosage that we offer> to> our dear patients,to see the response of the DMARD> given,the rule of thumb is to wait for 3 monts> atleast,as these drugs are long acting,and start> there> action slowly,enbrel,Infliximab are newer agent> relatively,but there cost,toxic sideefffects,are the> hinderense,any way,if you just tell be what are the> joints that are infalmmed in your son case,what were> the drugs given to him ,dosage,duration,i think iam> able to give you my opinion,> regards> Ahmad Iqbal Mirza> --- celeste <cassiee23@...> wrote:> > Hi and thank you for the welcome. I am glad> > there are people I can talk to about my son. The> > only> > other place that I can go would be Dallas Tx and> > that> > is even farther away but the rheumy is consulting> > others about my son on what to do next. My son> has> > systemic onset JRA. The doctor believes that> > something else may be wrong with him because he> > didn't> > respond to the rhemecaid or embrel therapy so he> > figures that the spinal tap will be able to tell. > > Thank you for the prayers I will accept any that> > comes> > my way.> > Celeste> > > > > > __________________________________________________> >

[Guest guest]

hi,

can u tel me the dose of mtx and enbrel used?

regards

Ahmad

--- celeste <cassiee23@...> wrote:

> Thank you for your interest, my son was on embrel

> and

> methotrexate for about a year and did not respond to

> it and about 3 months ago we tried the rhemecaid and

> he had an allergic reaction to it. The rheumy

> believes that the spinal tap will uncover something

> else that may be wrong with him because of his

> delays

> and unresponsiveness to any of the medicines. If

> you

> have any other suggestions I am open to them.

> Because

> of my sons age my rheumy is afraid to try most

> medicines.

> Celeste

> --- ahmad mirza <ahiqmi@...> wrote:

> > hi,

> > iam a rheumatologist,and was shocked to hear that

> > rheumy are going to tap the spinal fluid from ur

> > son.

> > Listen there are several drugs available nowadays

> to

> > treat JCRA,but the probelem is that we cannot

> > predict

> > beforehand that which drug gonna help our

> > patient,its

> > just the experiense and proper dosage that we

> offer

> > to

> > our dear patients,to see the response of the DMARD

> > given,the rule of thumb is to wait for 3 monts

> > atleast,as these drugs are long acting,and start

> > there

> > action slowly,enbrel,Infliximab are newer agent

> > relatively,but there cost,toxic sideefffects,are

> the

> > hinderense,any way,if you just tell be what are

> the

> > joints that are infalmmed in your son case,what

> were

> > the drugs given to him ,dosage,duration,i think

> iam

> > able to give you my opinion,

> > regards

> > Ahmad Iqbal Mirza

> > --- celeste <cassiee23@...> wrote:

> > > Hi and thank you for the welcome. I am

> glad

> > > there are people I can talk to about my son.

> The

> > > only

> > > other place that I can go would be Dallas Tx and

> > > that

> > > is even farther away but the rheumy is

> consulting

> > > others about my son on what to do next. My son

> > has

> > > systemic onset JRA. The doctor believes that

> > > something else may be wrong with him because he

> > > didn't

> > > respond to the rhemecaid or embrel therapy so he

> > > figures that the spinal tap will be able to

> tell.

> > > Thank you for the prayers I will accept any that

> > > comes

> > > my way.

> > > Celeste

> > >

> > >

> > >

> __________________________________________________

> > >

[Guest guest]

Hi the enbrel amount was 2 ml twice a week and the mtx

was .5 once a week I think it has been a while since

he has been on it.

--- ahmad mirza <ahiqmi@...> wrote:

> hi,

> can u tel me the dose of mtx and enbrel used?

> regards

> Ahmad

> --- celeste <cassiee23@...> wrote:

> > Thank you for your interest, my son was on embrel

> > and

> > methotrexate for about a year and did not respond

> to

> > it and about 3 months ago we tried the rhemecaid

> and

> > he had an allergic reaction to it. The rheumy

> > believes that the spinal tap will uncover

> something

> > else that may be wrong with him because of his

> > delays

> > and unresponsiveness to any of the medicines. If

> > you

> > have any other suggestions I am open to them.

> > Because

> > of my sons age my rheumy is afraid to try most

> > medicines.

> > Celeste

> > --- ahmad mirza <ahiqmi@...> wrote:

> > > hi,

> > > iam a rheumatologist,and was shocked to hear

> that

> > > rheumy are going to tap the spinal fluid from ur

> > > son.

> > > Listen there are several drugs available

> nowadays

> > to

> > > treat JCRA,but the probelem is that we cannot

> > > predict

> > > beforehand that which drug gonna help our

> > > patient,its

> > > just the experiense and proper dosage that we

> > offer

> > > to

> > > our dear patients,to see the response of the

> DMARD

> > > given,the rule of thumb is to wait for 3 monts

> > > atleast,as these drugs are long acting,and start

> > > there

> > > action slowly,enbrel,Infliximab are newer agent

> > > relatively,but there cost,toxic sideefffects,are

> > the

> > > hinderense,any way,if you just tell be what are

> > the

> > > joints that are infalmmed in your son case,what

> > were

> > > the drugs given to him ,dosage,duration,i think

> > iam

> > > able to give you my opinion,

> > > regards

> > > Ahmad Iqbal Mirza

> > > --- celeste <cassiee23@...> wrote:

> > > > Hi and thank you for the welcome. I am

> > glad

> > > > there are people I can talk to about my son.

> > The

> > > > only

> > > > other place that I can go would be Dallas Tx

> and

> > > > that

> > > > is even farther away but the rheumy is

> > consulting

> > > > others about my son on what to do next. My

> son

> > > has

> > > > systemic onset JRA. The doctor believes that

> > > > something else may be wrong with him because

> he

> > > > didn't

> > > > respond to the rhemecaid or embrel therapy so

> he

> > > > figures that the spinal tap will be able to

> > tell.

> > > > Thank you for the prayers I will accept any

> that

> > > > comes

> > > > my way.

> > > > Celeste

> > > >

> > > >

> > > >

> > __________________________________________________

> > > >

[Guest guest]

hi,

i sownder what rheumo guys gonna get with the spinal

tap,any way sometimes its very difficult to control

the diesease activity.

we can go up on high dosage of mtx ,can add

salazopyrine in combination with mtx or can add

systemic steroids as well.

but i think you should consult some other

rheumatologists.

regards

Ahmad

--- celeste <cassiee23@...> wrote:

> Hi the enbrel amount was 2 ml twice a week and the

> mtx

> was .5 once a week I think it has been a while since

> he has been on it.

> --- ahmad mirza <ahiqmi@...> wrote:

> > hi,

> > can u tel me the dose of mtx and enbrel used?

> > regards

> > Ahmad

> > --- celeste <cassiee23@...> wrote:

> > > Thank you for your interest, my son was on

> embrel

> > > and

> > > methotrexate for about a year and did not

> respond

> > to

> > > it and about 3 months ago we tried the rhemecaid

> > and

> > > he had an allergic reaction to it. The rheumy

> > > believes that the spinal tap will uncover

> > something

> > > else that may be wrong with him because of his

> > > delays

> > > and unresponsiveness to any of the medicines.

> If

> > > you

> > > have any other suggestions I am open to them.

> > > Because

> > > of my sons age my rheumy is afraid to try most

> > > medicines.

> > > Celeste

> > > --- ahmad mirza <ahiqmi@...> wrote:

> > > > hi,

> > > > iam a rheumatologist,and was shocked to hear

> > that

> > > > rheumy are going to tap the spinal fluid from

> ur

> > > > son.

> > > > Listen there are several drugs available

> > nowadays

> > > to

> > > > treat JCRA,but the probelem is that we cannot

> > > > predict

> > > > beforehand that which drug gonna help our

> > > > patient,its

> > > > just the experiense and proper dosage that we

> > > offer

> > > > to

> > > > our dear patients,to see the response of the

> > DMARD

> > > > given,the rule of thumb is to wait for 3 monts

> > > > atleast,as these drugs are long acting,and

> start

> > > > there

> > > > action slowly,enbrel,Infliximab are newer

> agent

> > > > relatively,but there cost,toxic

> sideefffects,are

> > > the

> > > > hinderense,any way,if you just tell be what

> are

> > > the

> > > > joints that are infalmmed in your son

> case,what

> > > were

> > > > the drugs given to him ,dosage,duration,i

> think

> > > iam

> > > > able to give you my opinion,

> > > > regards

> > > > Ahmad Iqbal Mirza

> > > > --- celeste <cassiee23@...> wrote:

> > > > > Hi and thank you for the welcome. I am

> > > glad

> > > > > there are people I can talk to about my son.

>

> > > The

> > > > > only

> > > > > other place that I can go would be Dallas Tx

> > and

> > > > > that

> > > > > is even farther away but the rheumy is

> > > consulting

> > > > > others about my son on what to do next. My

> > son

> > > > has

> > > > > systemic onset JRA. The doctor believes

> that

> > > > > something else may be wrong with him because

> > he

> > > > > didn't

> > > > > respond to the rhemecaid or embrel therapy

> so

> > he

> > > > > figures that the spinal tap will be able to

> > > tell.

> > > > > Thank you for the prayers I will accept any

> > that

> > > > > comes

> > > > > my way.

> > > > > Celeste

> > > > >

> > > > >

> > > > >

> > >

> __________________________________________________

> > > > >

[Guest guest]

Do you know if you have ever received Lariam? That's the anti-malaria

drug that causes the increased aggression and anxiety. It's suspected

in the recent murders at Ft. Bragg where 4 special forces soldiers

killed their wives recently.

Blackburn

On Monday, September 30, 2002, at 09:43 PM, nathan wrote:

> i was in the campaign of desert thunder operation southern watch and

> i was forced to take the anthrax shot myself and iw as wondering what

> side-effects that everyone else has i have been loosing my temper and

> b4 vaccination i had patience and was easy to get along with and then

> after the shots it was like some sort of angry rage was trying to

> break out but i have been trying to keep it under control i am on

> anxiety medication to sort of control it but is this all possible to

> come from a series of shots or is just a coincidence. it was just

> something that i have been wondering about.

>

[Guest guest]

,

Think about EVERYTHING else you've noticed since your problems began --

appetite, fevers, night sweats, weight loss or gain, and everything else.

Then go to your local VA physicians and let them puzzle it out. It might

not all be anxiety or depression. Those could be symptoms of something

more. If you haven't already gotten a full medical workup (history,

physical, labs, x-rays, etc.), you need one.

Get your testosterone (total, free, and " bioavailable " if offered), SHBG,

estradiol, estrone, LH, FSH and cortisol and ACTH checked. (OK. I trained

as an endocrinologist. These are still worth getting.) Get these drawn as

close to 0800 as you can, and BEFORE you eat or drink anything other than

water. (No coffee, tea, juice -- nothing but water.) Take any medications

you can take on an empty stomach. That's permitted. Those you have to take

with food will wait until after you have your blood drawn.

In all likelihood, depression IS a permanent part of your problem, since

depression is one of the physical manifestations of autoimmune diseases, and

autoimmune diseases are the rule with the anthrax immunization. You may

also require more than one antidepressant. Remember that antidepresasants

like Paxil, Zoloft, and the like require at least three weeks to take full

effect. They also lose about 15% of their effectiveness per year, so if

you've been on one of these for a while, it might be time to add something

else, such as bupropion. See your VA shrink about that. (Visiting a

clinical psychologist to help you deal with living with a chronic disease

might also be beneficial. I did. It won't cure your depression, but it'll

help you separate out the problems you CAN solve from those you can't.

Those will require medication.)

These reflect not only my professional interest in the syndromes following

the anthrax immunization, but also my personal experience with it. It'd be

great to get all of us together who've enjoyed the many benefits of being

injected with the " anthrax immunization " and enter every detail of our

histories and physical findings in a central database. We could then come

up with a full description of the " post anthrax injection syndrome " for the

benefit of us and all physicians who have to deal with us. We would also

put away blood and tissue samples at -70C for subsequent examination.

Dream on, all. The government won't be interested in studying us until it's

too late for all of us and the most severely affected of us are dead.

I need to mention here that I cannot offer any sort of individual medical

consultation to anyone. That's up to the people who can see and examine

you, order the requisite tests, and prescribe the requisite medications and

other therapies. What I do feel comfortable doing is getting you pointed in

the right direction.

WE WILL WIN!

Fisher, MD

LTC USAFR MC FS

(Inactive Reserve)

============================================================================

======

" War involves the certain use of horrible means for uncertain ends. "

-- Zinn

============================================================================

======

..> can anyone help

..>

..>

..> i was in the campaign of desert thunder operation southern watch and

..> i was forced to take the anthrax shot myself and iw as wondering what

..> side-effects that everyone else has i have been loosing my temper and

..> b4 vaccination i had patience and was easy to get along with and then

..> after the shots it was like some sort of angry rage was trying to

..> break out but i have been trying to keep it under control i am on

..> anxiety medication to sort of control it but is this all possible to

..> come from a series of shots or is just a coincidence. it was just

..> something that i have been wondering about.

..>

..> thank you for your support,

..> nathan

..>

[Guest guest]

Hi all,

]Does anybody get like palpatations in there throat.Iam expierincing several

tonight,

This chest pain on a scale 1 to 10 I d say it is a 2 or 3. Its just annoying and

scarey because it is over my heart area.

I havent seen my endo yet but am schelduled for March 1st.What questions should

I ask him?Iam on propanol 50 mg a day not on anything else yet .

Also they said I have several nodules that are not cancerous,

So any idea what I should say?I also am on calcium and magnesium and copper, and

that seemed to take away all my sickness like sinuitis bronchitis and ear

infection I was constantly sick prior to taking the vitamins.I feel tired even

though I was diagnosed hypert. I also have alot of those chest pains which isnt

uncommom for me,for actually the last three years.

But Iam so sick and tired of leading a life of being terrified of dying.I always

have to get to my computer to read the emails you all write because it helps me

not be so scared If I didnt have you all I would definitley be going batty.

Thanks for your help

Nichole

Re: hyperthyroidism exercise

Hi -

Unfortunately I haven't experienced a weight gain- but more like muscle loss.

At first I noticed my face look flabby. Then my arms got huge and cottage

cheese legs started showing up. All the muscle I had has turned to fat - but

I still weight the same!

Can win -

Sherry

HyperT all my life.

DiaX at age 47.

Storm in '91. Admitted to psych ward for anorexia.

Overdosed on 40mgs tap in Nov. 02

Now on 15mgs and diet.

My whole family has thyroid symptoms.

Some treated, most are not.

[Guest guest]

-

Chamomile hydrosol is great for rosacea, so is Neroli hydrosol.

Hopefully her Dr told her that certain foods will trigger rosacea,

spicy foods, wines, cheeses, etc, and that she is to avoid those. I

would also use an extremely mild cleanser such as Cetaphil.

HTH_

Lynda

CHOSEN03@... wrote:

>hello everyone i hope this email reaches you all in good health. i have a

>friend who suffers with cia (that is red blotches on the skin) really bad.

>

--

Lynda Sorenson

http://www.Luna-Aromatics.com

Come to the First Aromatic Un-Conference September 2003

http://www.Luna-Aromatics.com/2003unconf.html

[Guest guest]

Anne,

Not sure how long it has been since you've had your sons tonsils out, but it

took my son Coby almost a full year after the tonsilectomy to get completely

symptom free. He never had joint or stomach pains until AFTER the

tonsilectomy! It was like having episodes without the fevers. Coby always had

mouth

ulcers with his fevers. We would use Baby Zilactin which is used to numb baby's

gums from the pain of teeth cutting through. We would rub up his gums and then

feed him. It was the " only " way that we could get him to eat. Hope this

helps.

Carol Kurtz

Coby - 6 yrs old ( Free!)

[Guest guest]

Anne,

Not sure how long it has been since you've had your sons tonsils out, but it

took my son Coby almost a full year after the tonsilectomy to get completely

symptom free. He never had joint or stomach pains until AFTER the

tonsilectomy! It was like having episodes without the fevers. Coby always had

mouth

ulcers with his fevers. We would use Baby Zilactin which is used to numb baby's

gums from the pain of teeth cutting through. We would rub up his gums and then

feed him. It was the " only " way that we could get him to eat. Hope this

helps.

Carol Kurtz

Coby - 6 yrs old ( Free!)

[Guest guest]

You might want to check out fsma's (www.fsma.org) canadian chapter for resources

in your area. I know there are several families there, just not sure what

provinces. you can also check www.smasupport.com for other families in Canada.

Welcome to the chat!

Hugs

Jeni

jlauchie <jlauchie@...> wrote:

Hi: My name is and we were told jan 19 2005 that our son

Zachary has SMA type 2.

The Dr who told us said there was no research or trials giong on.

Now I konw diffrently! However can anyone tell me if they have heard

of anything going on in Canada for type 2. The only thing I've found

is in ca. and that is very far from where we live and I can't find

money to help us get there.

Thank you soooo much for your time and information.

p.s. Thanks Neeka

It's great here

A FEW RULES

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List manager: (Sexy Mature Artist) Email: Esma1999@...

[Guest guest]

Hi ,

Yes, there is a trial in Montreal and (I think) also Toronto. Where do

you live?

My son Bernie has type 2, now 8 years old and doing well.

Bettylou

Guelph, Ontario

jlauchie wrote:

>

> Hi: My name is and we were told jan 19 2005 that our son

> Zachary has SMA type 2.

> The Dr who told us said there was no research or trials giong on.

> Now I konw diffrently! However can anyone tell me if they have heard

> of anything going on in Canada for type 2. The only thing I've found

> is in ca. and that is very far from where we live and I can't find

> money to help us get there.

> Thank you soooo much for your time and information.

>

> p.s. Thanks Neeka

> It's great here

>

>

>

>

>

> A FEW RULES

>

> * The list members come from many backgrounds, ages and beliefs So all

> members most be tolerant and respectful to all members.

>

> * Some adult language and topics (like sexual health, swearing..) may

> occur occasionally in emails. Over use of inappropriate language will

> not be allowed. If your under 16 ask your parents/gaurdian before you

> join the list.

>

> * No SPAMMING or sending numerous emails unrelated to the topics of

> spinal muscular atrophy, health, and the daily issues of the disabled.

>

> Post message:

> Subscribe: -subscribe

> Unsubscribe: -unsubscribe

>

> List manager: (Sexy Mature Artist) Email: Esma1999@...

>

>

>

>

> oogroups.com

>

> List manager: (Sexy Mature Artist) Email: Esma1999@...

>

>

>

>

>

>

>

>

[Guest guest]

Hi Bettylou,

Thanks for the info on monteral. We live in Thunder Bay ontario I

know about the Toronto on but it is for SMA type 1 . The woman who

told me about this site has her son @ the stanford trial and is happy

with the results. Thank you so much for your time

anyinfo is great

Thunder Bay, ont

hoogroups.com, Bettylou Ross <eross@u...> wrote:

> Hi ,

> Yes, there is a trial in Montreal and (I think) also Toronto. Where

do

> you live?

> My son Bernie has type 2, now 8 years old and doing well.

> Bettylou

> Guelph, Ontario

>

> jlauchie wrote:

>

> >

> > Hi: My name is and we were told jan 19 2005 that our

son

> > Zachary has SMA type 2.

> > The Dr who told us said there was no research or trials giong on.

> > Now I konw diffrently! However can anyone tell me if they have

heard

> > of anything going on in Canada for type 2. The only thing I've

found

> > is in ca. and that is very far from where we live and I can't find

> > money to help us get there.

> > Thank you soooo much for your time and information.

> >

> > p.s. Thanks Neeka

> > It's great here

> >

> >

> >

> >

> >

> > A FEW RULES

> >

> > * The list members come from many backgrounds, ages and beliefs

So all

> > members most be tolerant and respectful to all members.

> >

> > * Some adult language and topics (like sexual health, swearing..)

may

> > occur occasionally in emails. Over use of inappropriate language

will

> > not be allowed. If your under 16 ask your parents/gaurdian before

you

> > join the list.

> >

> > * No SPAMMING or sending numerous emails unrelated to the topics

of

> > spinal muscular atrophy, health, and the daily issues of the

disabled.

> >

> > Post message:

> > Subscribe: -subscribe

> > Unsubscribe: -

unsubscribe

> >

> > List manager: (Sexy Mature Artist) Email: Esma1999@a...

> >

> >

> >

> >

> > oogroups.com

> >

> > List manager: (Sexy Mature Artist) Email: Esma1999@a...

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

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Contact for any quantity.

Email: anveshraovani@...

cell:0091 9846300104

Regards

K Sreenivasa Rao

cell: +91 9846300104.

__________________________________________________

[Guest guest]

It sounds like you are having a herxheimer or Die off reaction to the coconut

oil.

This is completely natural and to be expected.The coconut oil is ridding your

body of some of the toxins and probably yeast and Bacteria. As the microbes die

they release more toxins into your system and the body must clesan itself

out.Those toxins are what cause you to feel so bad. Drink lots of water. If the

symptoms get too uncomfortable back off on the amount of coconut oil you are

taking .It will take longer to achieve results , but there is no need to be

miserable.

The good fatty acids in coconut oil will transfer to the baby through your

breast milk.This will help the baby to be healthier.

As for sleep. Do not take the coconut oil after about 3 PM until your body

adjusts to the oil. Aside from what I use for cooking the evening meal I dont

use coconut oil after 3 PM because it gives me a welling of energy that will

last until about midnight and make me feel too pepped up too sleep.I have never

heard that coconut oil will help with a insomnia problem.

I have heard that calcium and magnesium together can help with insomnia. And

since you are nursing ,your body is using calcium to make the milk for your baby

There is a good chance you are deficient. Try taking calcium and magnesium just

before bedtime. It is said to relax the nerves and muscles. You may want to take

a bath in Epsome Salts. That is magnesium too. And a warm bath is very relaxing

all by itself.

Good luck

IN NC

-- In Coconut Oil , " ckjlbcij " <ckjlbcij@...> wrote:

>

> recently read a book about CO and losing weight as well as helping

> WTS, by Mr. Fife. I loved it. I've been following the dietary

> reccomendations and taking at least 3 tbls. of CO daily for almost a

> week. Three of those days I've felt crummy though, loss of more sleep

> (I'm already a chronic insomniac), palpitations, lack of energy. Is

> this normal? Does my body just need time to adjust to the oil or high

> protein? I have not been cheating and eat no refined carbs, sweetners

> or grains. I am also nursing a 9 mo old is this healthy for her? She

> is on some solids. I am just praying that I can adjust and this will

> in some way help my severe insomnia and hypoglycemia I've been dealing

> with for so long!

>

[Guest guest]

Ask your pharmacy for the full package insert of an albuterol inhaler, then get out your spyglass and find the inactive ingredients. Otherwise, find the company that makes the inhaler and email them for a copy of an insert.

I posted this in the last discussion group about inhalers:

In response to the Montreal Protocol Agreement of 1987, metered-dose inhalers containing CFC's have been phased out over the past 10 years due to their potential effect on the ozone layer. The most common propellants used until 1996 were CFC's (chlorofluorocarbons). However, CFC's have been replaced by HFA's (hydrofluoroalkanes). A dispersing agent is added to the formulation in order to maintain the particles in a suspension of uniform concentration when sprayed. Because of the differing solubilities of HFA's from CFC's, it became necessary to add ethyl alcohol as a dispersing agent.

This was the source of my information:

http://www.uspharmacist.com/oldformat.asp?url=newlook/files/Feat/ACF2F19.cfm & pub_id=8 & article_id=50

can anyone help

Hi everyone, I am still chasing my "burden of proof" for the board of nursing here in CA. I have to prove to them that I have not drank with my positive EtG. I have gone through everything, and I think I have narrowed it down to my Albuterol inhaler (I have asthma). I have done just about everything I can to find any kind of backup that albuterol has ethanol, but can't find it in writing anywhere. Does anyone have any ideas where i can find the chemical compound of albuterol or anything that would support my theory? Thanks, Jenn

[Guest guest]

hi niles, www.fda.gov has albuterol listed under inhalant drugs with alcohol clearly listed as an ingredient...submitting this to me would have more power because it is a us govt. document...check it out... hope this helps, robinnilesclay <nilesclay@...> wrote: Hi everyone, I am still chasing my "burden of proof" for the board of nursing here in CA. I have to prove to them that I have not drank

with my positive EtG. I have gone through everything, and I think I have narrowed it down to my Albuterol inhaler (I have asthma). I have done just about everything I can to find any kind of backup that albuterol has ethanol, but can't find it in writing anywhere. Does anyone have any ideas where i can find the chemical compound of albuterol or anything that would support my theory? Thanks, Jenn

[Guest guest]

Try this link:www.spfiles.com/piproventilhfa.pdf

can anyone help

Hi everyone, I am still chasing my "burden of proof" for the board of nursing here in CA. I have to prove to them that I have not drank with my positive EtG. I have gone through everything, and I think I have narrowed it down to my Albuterol inhaler (I have asthma). I have done just about everything I can to find any kind of backup that albuterol has ethanol, but can't find it in writing anywhere. Does anyone have any ideas where i can find the chemical compound of albuterol or anything that would support my theory? Thanks, Jenn

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