New member

[Guest guest]

Amy

Hi and welcome to the group. I'm a single mom of 3. My 10 yr old

daughter Zhondrese has poly jra. There's a few other single parent in this

group that will be glad to share their stories with you. In the beginning the

road was rough with this jra and I thought I was going to loose my mind,

because I was doing it all alone, but the Lord has given me the strength I

need to deal with all that's going on here. If you would like you can

e-mail me or im me.

Ywellen

[Guest guest]

Hi Amy,

My son Josh has had systemic JRA for almost 6 years. He was a little older

than your son when it first started. He'll be 12 in April. I understand how

difficult it can be, especially in the beginning. Just coming to terms with

accepting that your child has what may be a long-term illness, and trying

your best to adjust to the changes that may be necessary, can be a

challenge. I'm a single parent, too. I think our family (I have a 10 year

old daughter, as well) has managed pretty well. In many ways it gets easier

over time, after you have some experience and a better understanding of JRA.

Sure, there are times when I get discouraged. Even now. But you learn to

accept the challenges and try to make the best of it. Don't try to do it all

alone, though. If you have friends or family that offer their help, or who

are available even just to listen when you're needing someone to talk to,

please do accept their kindnesses. People often want to help but just don't

know how. It's up to you to let them know, even if it means that they'll

just be willing to listen as you rattle off info about the latest doctor

appt or how hard Dakota's morning was. Just talking about it often helps.

And now that you've found all of us, you can do that here, too. We may be

miles apart but sometimes it feels like we're right there beside you,

because we have been through similar situations and do understand what it's

like. In the beginning there are often more bad days than good ones. Most

times, things do begin to balance out more ~ once the children are getting

the proper medical care and their physical health improves.

Good Luck. And please feel free to let us know how it's going. If you have

any questions, just ask. Chances are good that you'll get at least a couple

of responses that may help. Looking forward to getting to know you : )

Aloha,

Georgina

----- Original Message -----

From: <Amybear41@...>

< >

: Hello

: I' m Amy and my 2 year old son Dakota just got diagnosed with JRA. I

: wondering if anybody had any suggestions, or advice for me. I am a single

mom

: and well it is kind hard dealing with everything by myself. I would really

: appreciate it.

: Thank you very much

[Guest guest]

Welcome, . How old is ? Please ask questions, we

all remember what it is like in the beginning. Jana

[Guest guest]

Welcome, --

Glad to hear is responding well to the Naprosyn. Hope you find support

and answers with this group, as I have.

[Guest guest]

Welcome to the group , My daughter

is 12 and has had systemic jra since age 7. This is a

wonderful group, pull up a chair.

Suzie

--- jwood_fire@... wrote:

> Hello my name is my sons name is ryan he was

> diagonised with

> systemic JRA on 4-11-2001. he is currently only

> taking naprosin and

> it seams to be helping.we are thinking of alot of

> questions and

> slowly learning about jra.

> Our Dr. is Cassidy at the University of

> Missouri in Columbia

> Mo.we think he is a good Dr. but are worried that he

> is about to

> retire.Iwill continue to read the emails and hope to

> be more informed

> thank you.

>

>

__________________________________________________

[Guest guest]

Dear , Welcome to the list. You will learn alot here. For some reason

it is becoming dominated by systemic patients. When I first found it about

20 months ago, it seemed like there were just about two other systemic

children. My daughter was diagnosed in 1999 with systemic at the age of 10.

How old is your son? Does he have the rash and fevers still? Again,

welcome. and n

>From: jwood_fire@...

>Reply-

>

>Subject: new member

>Date: Tue, 01 May 2001 00:27:51 -0000

>

>Hello my name is my sons name is ryan he was diagonised with

>systemic JRA on 4-11-2001. he is currently only taking naprosin and

>it seams to be helping.we are thinking of alot of questions and

>slowly learning about jra.

>Our Dr. is Cassidy at the University of Missouri in Columbia

>Mo.we think he is a good Dr. but are worried that he is about to

>retire.Iwill continue to read the emails and hope to be more informed

>thank you.

>

>

>

>To manage your subscription settings, please visit:

>

>

>For links to websites about JRA:

>http://www.geocities.com/Heartland/Village/8414/Links.html

>

>

[Guest guest]

,

Welcome to the group. We, like you, came to this group with nothing but

questions. Please know you can ask anything here and probably find someone who

has experienced it or has a lead for you. This list has been the saving grace

for me more times than I can count.

How old is ?

Skyler is on Naprosyn, among many other meds. With any luck it will be enough

to stop the flare. But if not, I am certain you will be able to find another

Dr. if the current one does retire.

Prayers to you and your family, but especially for .

[ & Skyler]

new member

Hello my name is my sons name is ryan he was diagonised with

systemic JRA on 4-11-2001. he is currently only taking naprosin and

it seams to be helping.we are thinking of alot of questions and

slowly learning about jra.

Our Dr. is Cassidy at the University of Missouri in Columbia

Mo.we think he is a good Dr. but are worried that he is about to

retire.Iwill continue to read the emails and hope to be more informed

thank you.

[Guest guest]

Hi

and welcome to the group

ask anything your concerned about and someone in the group more than likely

will have the answer or advice

Robbin

[Guest guest]

-

Welcome. How old is ? What type of jra does he have? I'm sure you'll

find this group helpful. Lots of people here with great information -- often

much more than you'll get from your Dr. So ask away!!

Diane

[Guest guest]

Welcome !

Sorry to hear that your doctor may be retiring. My daughter is a patient at

the University of Florida and her doctor just retired. He is a professor & a

doctor so we have a great deal of faith in him. However, he is still seeing

his patients on a part-time basis, so we consider ourselves very fortunate!!!

Once again, welcome!

[Guest guest]

Count me as one of the vaccinosis injured (my son and daughter)

Kathy

[ ] New member

> My son now aged 20 has had siezures since the age of 10 month old

> right after his vaccinations. Any coincidence?? I think so. Pretty

> nasty anyways. If anyone has had the same problem could you let me

> know. There is a good article on message 17 I found from Dusan

> Stoikovic whom I want to thank immenslly. It helps to be educated on

> this sad debilitation. thank you.

>

>

> _

>

>

[Guest guest]

Hi ,

Are you sure that you're hyperthyroid? The fact that you were put on Synthroid sounds more like hypothyroidism.

There are thousands of different lab tests, and each lab has their own normal range for each of these tests. If you tell us what test had a result of 138 and what the reference range is for that test, we can help you more. We all look forward to hearing back from you, elaine

[Guest guest]

--- daisyelaine@... wrote:

> Hi ,

> Are you sure that you're hyperthyroid? The fact that

> you were put on

> Synthroid sounds more like hypothyroidism.

> There are thousands of different lab tests, and each

> lab has their own normal

> range for each of these tests. If you tell us what

> test had a result of 138

> and what the reference range is for that test, we

> can help you more. We all

> look forward to hearing back from you, elaine

> My range was supposed to be between 1.3

and 7.8 but thats all i know for now

__________________________________________________

[Guest guest]

Hi Lori,

Wow, sounds like you were in thyroid storm before your diagnosis. I'm glad your blood pressure is finally under control and your levels of thyroid hormone are coming down. After 6-8 weeks, when the massive stores of thyroid hormone in your gland are depleted, your dose of methimazole is usually decreased to prevent you from becoming hypothyroid. Some symptoms of hypothyroidism include joint pain, depression, weight gain, constipation, memory loss, and tiredness. When I'm hypothyroid I literally cannot get out of bed.

There are two types of thyroid eye disease. One is caused by excess thyroid hormone, and the symptoms resolve as your levels return to normal. Some people also experience these problems when their thyroid hormone levels drop too low. The other type is a congestive infiltration caused by the autoimmune condition--this type of eye disease runs its own course independent of the thyroid disorder and does respond to steroids. However, there's a debate on their safety because the symptoms can return worse than before if the steroids are withdrawn abruptly and the immune involvement is still active. You may want to see an ophthalmologist if you think you have the congestive infiltrative disorder, which is characterized by proptosis (protrusion of the eyeballs). The symptoms caused by excess thyroid hormone are more often dryness, grittiness, soreness, and staring.

See my web site, http://daisyelaine_co.tripod.com/gravesdisease/

[Guest guest]

Isn't Leuflenamide know as Arava? If so, the thing that concerns me is that it has quite a long half life and it causes birth defects. So it is very important to get it completely out of the system. We chose not to give it to Abbie for those reasons. One point we were able to control from our end. THe rheumy respected our feelings which feels good. If we were overreacting he would tell us (as he has in the past about other meds). He did say that another drug (don't remember what) is given to help clean it out, but it still scares me too much.

Christy

[Guest guest]

Christy,

Thanks for your reply about Arava. its a shame that most of

the " good " drugs have such side effects. has such a high pain

treshold that she has told us that she would rather suffer the daily

pain than suffer the side effects of the mtx (which is why she has

been prescribed Arava).

When she was first put onto mtx we were told that on no account

should she have alchol or get pregnant, she was 8 yrs old at the

time! we were being warned that A, they grow up very fast and B, be

prepared for a long struggle.

Thanks again and sorry my reply has taken so long.

Ian

(in a rather chilly, damp UK)

> Isn't Leuflenamide know as Arava? If so, the thing that concerns me

is that

> it has quite a long half life and it causes birth defects. So it is

very

> important to get it completely out of the system. We chose not to

give it to

> Abbie for those reasons. One point we were able to control from our

end. THe

> rheumy respected our feelings which feels good. If we were

overreacting he

> would tell us (as he has in the past about other meds). He did say

that

> another drug (don't remember what) is given to help clean it out,

but it

> still scares me too much.

>

> Christy

[Guest guest]

I hear ya kareemah about the meds. I started having seizures three years ago

and it was a mess. I started out at 38. So it was and is still hard to adjust

to the dis-ease. I started paying attention to my diet not always but most of

the time and I started following Dr. hulda clarks parasite cleansing program

and zapping. I have had great results from where I started with sometimes 7

or 8 partials a day and grand mals whenever to now a grand mal in my sleep

every couple of months. It seems as though I have some say so in the activity

while I am awake. I just got the flu so I had one Monday while I was sleep.

It is soooo depressing to me. But when I think of the feedback from others on

the meds, I know I want to wait and see what I can do to make a difference.

And like I said they have gotten better just not gone. I also got a magnetic

pillow from my Mom she said it was about 150.00 but it help with the cranial

issues that I was having. Anyway love him and try your hardest to find a way

to help him and please be careful of the vomit when he sleeps. My wife says

that mine only last about 30 or 40 seconds but they are strong. My body and

my tongue can attest to that. Good luck and shout out anytime.

Darrell

[Guest guest]

Thank you kindly for your input. It helps me to hear the experiences of

others. Keep strong and keep trying to heal yourself the natural way.

God Bless,

Kareemah

[Guest guest]

Hi Kareemah, I too have a child who only experiences nocturnal seizures, and

yes you are right, if you do nothing they will get worse. We started out

having 2-3 mild episodes (10-15 seconds long) every night, then they

progressed into (8-9) 4-5 min. convulsions.

We have been through the ringer trying to find out what is wrong with our

daughter and nothing resulted, all the neurologist done is put her on high

doses of anti seizures meds.

I have asked so many times, why is she just having them in her sleep. The

answers have varied greatly but no one answer has satisfied me.

What I would like to share with you is what I have recently found. I have not

put gotten any test results back and I don't know if the info will help you

or not. But I hate not to share it with you when it could be beneficial.

My daughter had a lot of problems with her stomach prior to the onset of her

seizures and I kept telling the doctors that but no one had any idea how this

could be related to the seizures. Upon my insistence, she was tested for all

kinds of parasites. The only thing they found was an amoeba called

" Dientamoeba fragilis " which lead no were.

However, I ran across info on celiac disease last week. After reading the

article I cried because it sounded so much like my child. All celiac disease

is a sensitivity to gluten, the small intestines becomes inflamed hindering

proper absorption of nutrients, thus the brain does not get the nutrients it

needs and seizures develop.

In my opinion, the reason it happens at night is because during the day maybe

the body can still receive enough nutrients but at night time since we do not

eat the blood sugar level drops and thus seizures are sparked. Remember I

said this is my opinion.

However, in 10% of the people inflicted with celiac disease have a rash. And

85% of the people with this rash have celiac disease.

The cure for the illness just involves a gluten free diet. Which I am sure is

hard to maintain but I don't see any more difficult than going through the

seizures on a nightly base.

Kareemah, by no way am I saying this is what your son has. But I just want to

make you aware of it. We have gone through these seizures 10 months now, and

I have ran myself crazy looking for info to let me know what is wrong with my

child. Being aware of possible causes is a good thing because if you know

what is out there that can cause the seizures it will make it easier to

eliminate what is going on with your child.

Good luck and God bless.

In the future if you find anything that you think is beneficial please let me

know.

Tracey

[Guest guest]

Kareemah, Is your sons' body temp running normal, meaning the usual 98.6 on a

consistent bases? I am just wondering and trying to compare notes.

Thanks, Tracey

[Guest guest]

I'm not sure. I don't usually take his temp. But I know his hands and feet

are often cold, which is usually a sign of Anemia? Is that correct? But

other than that I don't notice a fever at any time. I will check from time

to time to see.

Kareemah

[Guest guest]

Kareemah, cold hands and feet I am sure does not just mean anemia, improper

blood circulation due to a number of reasons should be considered, which

should be mentioned to the doctor (but that does not garantee that you will

receive a proper respons) Sorry I am kind of down on doctors these days.

You know, a couple of weeks back I remember a lady, in our group, mentioning

that her child also had circulatory problems. It is just peculiar that two

children with seizure disorders have circulatory problems, I wonder are there

more?

When I mentioned body temp I did not mean elevated temperature. My daughter's

temp has been running 95-96 degrees for the last ten months (ever since the

seizures started) and I was just curious did anyone else have this problem.

Basically what I have been trying to do is collect like symptoms from other

children with seizures disorders just to see if we can get to the bottom of

the this. In my opinion, there has to be a cause, my goal is to find the

cause and help other parents so they don't have to go through (excuse me) the

hell that I have been through these last ten months. I am sure you guys can

relate to this.

What I would really like for everyone to do is write down symptoms that your

child is having. And try to go back to the beginning of the seizures, if you

can, to see if you can pinpoint two or three possibilities that may have

onset the seizures. I have done this and I came up with two things 1) we took

a trip to Texas 2) got fillings put into her teeth (Amalgams

containing Mercury).

It just makes sense to me to do this, we are a group, we all have children

who suffer from a seizure disorder, so let's compare and see what we can come

up with. Please try not to leave out anything, no matter how small or

irrelevant the symptom seems.

I'll start,

's symptoms are:

Constant stomach aches

A rash of unknown origin

Fatty stools

Bloating

distented stomach

Low body temp usually 95-96 degrees

Irritability (probably due to meds)

And of course the seizures

Thanks, Tracey

[Guest guest]

Kathy,

I agree with all the things you are saying and I understand your anger, trust

me, do I understand your anger. We live in a screwed up world where man is

creating his own toxic tonic.

What I am trying to do is obtain a list of symptoms that children with

seizures have incommom. We have to start some where in some kind of organized

fashion. We all know that there are several known reasons seizures can occur

but have we all ever sat down to think about categorizing in order to obtain

useful info. When you have a disease that is caused by one bacteria, and you

have isolated 20 bacteria that could be the cause of the disease. How are you

going to find out which bacteria is actually the culprit, surely not by

injecting all 20 bacterail species into a host. You choose one at a time.

This may be a bad correlation, because like you, I think there are numerous

contributing factors to " epilepsy " , or reacurrent seizures.

Let me give you a senario, My child, in my heart I believe she has a

sensitivity to gluten, if not gluten some other digestive disorder that links

to her seizures. Yet, she was having stomach problems way before the seizures

started. It was not until she went to the dentist to receive the mercury

fillings that she started having the seizures. In my opinion, the metals not

only added toxicity but act as a impulse conductor. It's like standing

outside during a lightning storm with a metal rode.

This is only my opinion.

However, whoever would like to take the time to share their child's symptoms,

please do so.

Thanks and God bless,

Tracey

[Guest guest]

I like your attitude and spunk. I will try to help as much as I can. You

seem to be very motivated and so am I. I feel we must educate ourselves as

much as we can about this illness and in general. And not wait around to be

spoon fed our info. I am pregnant and pray to God that I can finally have a

homebirth. I will be away in Oregon this week until the 8th. I will tune in

when I can, and try to give you my thoughts and findings, if you believe they

will be helpful. I will take my sons temp tommorow to see what I can get.

And yes my son does have fillings also. Around four to six.

Kareeemah

[Guest guest]

I agree a great deal that diet has just about everything to do with our

physical conditions. I'm sorry to give such a short reponse, but I hope to

get more into this discussion later.

Thanks for the insights,

Kareemah