New here

[Guest guest]

Thanks for your replies/support. It is much appreciated. I can see I

still have a lot to take in, but I will try to keep going.

Thanks again,

[Guest guest]

,

I am glad that you brought up the holistic approach of healing not

just the body, but the emotional and spiritual self also. I think

that this is just as important.

I do like that Donna Gates brings this up in her book. I am glad

that I did her diet first. It laid the ground work for the GAPS diet.

I also think that both authors have important and valid points

made in their books.

Therese

P.S. PLEASE, when you reply to an email on this site,

delete the original email off of the end !!!!!!!!!!!!!!!

[Guest guest]

Robin,

I quit with the whole school politics thing. I'm so tired of it all.

So, I'm going the virtual school route. Any advice on that?

Thanks.

> Hi. I'm new here. I've been reading for awhile now.

>

> My child was Dx'd with Asperger's in April of 2006 at 5 years old.

A

> year prior to this it was Sensory integration, adjustment disorder,

> possible ADHD, possible Bipolar. The manager that I worked for

didn't

> like that at all. I actually described it as being a little like

> autism. I was told that he had a cousin whose child has autism and

> they have no life. From that point on I was phased out of the

> company. Go figure it was an insurance company. I didn't even have

an

> actual spectrum Dx then.

>

> Anyway, it's gone downhill since then. The state I'm in recognizes

> Asperger's as being too " high functioning " and refused waiver

> services citing that it's all social. The school district believes

> it's all behavioral and won't provide services.

>

> They kept putting my child in the special ed room as a punishment

for

> her behavior. They used what they considered to be social stories

> which didn't outline anything other than the consequences for

> breaking rules...no rules listed. There were meltsowns every day

> after school and in the morning screaming about not wanting to go

to

> school. I was told by the teacher that they don't see that there

and

> she's sorry I have problems with her at home.

>

> Because of their refusal to even do hand to hand transitions they

> lost my child (wound up on a bus...luckily the one heading

> home...while I was there to pick up). When I reminded them of the

> wandering and running off I had warned them about in the IEP

meeting

> I was told, " Oh well, now we know. "

>

> The final straw came after I requested an IEE to be done. My child

> came home with finger impressions on one arm and broken capillaries

> on the other. I took my child to the doctor, who called child

> protective services (CPS) on the school. But since I'm a good mom

and

> took my child out of that school, they (CPS) wouldn't do anything.

> The school actually told CPS that they felt what they did was

> appropriate and that there was a miscommunication. I was never

> contacted on the day this incident happened or any other time they

> restrained or took my child out of the classroom. Which I believe

by

> law is considered in school suspension since there is no IEP.

>

> The IEE was approved by the district, but once I pulled my child

out

> of school they dropped the ball. They actually asked if I still

> wanted to have it done. This came almost a month later after the

last

> contact I had with them was where the director of special ed stated

> she was tring to call the person I requested. That was the last I

> heard. I wrote back asking why this wasn't carried through. I was

> told that I would have to do it. And to look at their policies. I

> looked at their policies...it states they have to make the call to

> the person. So, now they're playing more games. And in her two most

> recent letters to me she is stating that the IEP team at my child's

> previous school will reconvene once the IEE is complete (I have to

> call that meeting too) and they will " consider " it. Seriously, the

> word was in quotes both times.

>

> I'll stop now...this is already too long.

>

>

>

>

>

>

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

> Looking for last minute shopping deals? Find them fast with

Search.

>

[Guest guest]

Wellllll,,,,of course!!! Hee hee. First, though.....I'd check fast. In Wisconsin, the school choice timeframe is 2 weeks in early Feb. So,,,,time is running out here, actually. Google your state and the words virtual school FAST, if you haven't already. Please let me know if you've already done it!!! Hee hee. I actually drove to the school and filled it all out THERE just to make the deadline last year. Anyway,,,,,,,,if you choose to do it, you're set. If you don't choose to do it,,,,,you don't filll out the "later date" paperwork that comes in like, March or April. Again,,,,keep me posted. Robinmommy1as <misha_iu@...> wrote: Robin,I quit with the whole school politics thing. I'm so tired of it all. So, I'm going the virtual school route. Any advice on that?Thanks.> Hi. I'm new here. I've been reading for awhile now. > > My child was Dx'd with Asperger's in April of 2006 at 5 years old. A > year prior to this it was Sensory integration, adjustment disorder, > possible ADHD, possible Bipolar. The manager that I worked for didn't > like that at all. I actually described it as being a little like > autism. I was told that he had a cousin whose child has autism and > they have no life. From that point on I was phased out of the > company. Go figure it was an insurance company. I didn't even have an > actual spectrum Dx then.> > Anyway, it's gone downhill since then. The state I'm in recognizes > Asperger's as being too "high functioning" and refused waiver > services citing that it's all

social. The school district believes > it's all behavioral and won't provide services. > > They kept putting my child in the special ed room as a punishment for > her behavior. They used what they considered to be social stories > which didn't outline anything other than the consequences for > breaking rules...no rules listed. There were meltsowns every day > after school and in the morning screaming about not wanting to go to > school. I was told by the teacher that they don't see that there and > she's sorry I have problems with her at home. > > Because of their refusal to even do hand to hand transitions they > lost my child (wound up on a bus...luckily the one heading > home...while I was there to pick up). When I reminded them of the > wandering and running off I had warned them about in the IEP meeting > I was told, "Oh well, now we know." >

> The final straw came after I requested an IEE to be done. My child > came home with finger impressions on one arm and broken capillaries > on the other. I took my child to the doctor, who called child > protective services (CPS) on the school. But since I'm a good mom and > took my child out of that school, they (CPS) wouldn't do anything. > The school actually told CPS that they felt what they did was > appropriate and that there was a miscommunication. I was never > contacted on the day this incident happened or any other time they > restrained or took my child out of the classroom. Which I believe by > law is considered in school suspension since there is no IEP.> > The IEE was approved by the district, but once I pulled my child out > of school they dropped the ball. They actually asked if I still > wanted to have it done. This came almost a month later after

the last > contact I had with them was where the director of special ed stated > she was tring to call the person I requested. That was the last I > heard. I wrote back asking why this wasn't carried through. I was > told that I would have to do it. And to look at their policies. I > looked at their policies...it states they have to make the call to > the person. So, now they're playing more games. And in her two most > recent letters to me she is stating that the IEP team at my child's > previous school will reconvene once the IEE is complete (I have to > call that meeting too) and they will "consider" it. Seriously, the > word was in quotes both times. > > I'll stop now...this is already too long.> > > > > > > ---------------------------------> Looking for last minute shopping deals? Find them fast with

Search.>

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Welcome. We are a real friendly bunch. Just join in when you are ready, tell us a bit about your son and ask any questions you may have. My name is Pam, and I have two sons on the Autism Spectrum. Pam :)Delicious ideas to please the pickiest eaters. Watch the video on AOL Living.

[Guest guest]

Welcome, my name is Sherry and i have a 10 yr old ds who is dx aspergers. we are here whenever u feel comfortable.Sherrylatenightanarchy <latenightanarchy@...> wrote: Hi,I may lurk for a few days until I get a feel for things, but my 4yo dswas recently diagnosed and I'm still a little overwhelmed and soakingup info as fast as I can. thanks Be a better friend, newshound, and know-it-all with Mobile. Try it now.

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

I understand. My 3 1/2 year old was diagnosed last week with

Asperger's. I know I have just got to breathe and make a commitment to

be the help that he needs. I am so overwhelmed.

>

> Hi,

> I may lurk for a few days until I get a feel for things, but my 4yo ds

> was recently diagnosed and I'm still a little overwhelmed and soaking

> up info as fast as I can.

>

> thanks

>

[Guest guest]

My name is Connie (the name on the account is made up to help me identify scams and spammers). I found out last week also, and on one hand it has been a relief (now I know whats causing all the trouble) and on the other hand a heartbreak because I do not know how to help him or what to do. We have a long list of doctors and specialists we are lining up to see. I feel like I've been sitting in a dark closet the last few years and now with a name for whats been going on (and the fact that I'm not crazy) and finding all these other people who live with the same stuff I do, has been extremely enlightening and heartening. I read a couple pages of posts and found myself smiling with tears thinking omgosh that happens all the time, I hear you girl!. I have an older son (6 & 1/2) who is advanced (in 2nd grade). I've been married for 8 years and have a beautiful mastiff who i bought for my younger one for his first

birthday (he LOVES animals). We live in Florida and I'm sahm, who used to work in hospital laboratory, management and testing, and with the blood donation services. thank you for being warm and welcoming. Conniecharleneshawa <charleneshawa@...> wrote: I understand. My 3 1/2 year old was diagnosed last week with Asperger's. I know I have just got to breathe and make a commitment to be the help that he needs. I am so overwhelmed. > > Hi, > I may lurk for a few days until I get a feel for things, but my 4yo ds > was recently diagnosed and I'm still a little overwhelmed and soaking > up info as fast as I can. > > thanks >

Never miss a thing. Make your homepage.

[Guest guest]

When Dylan was younger, I would look at him and just didn't know what to do. I wanted to feel closer to him, I wanted to appreciate the strengths he had instead of seeing the challenges of his behaivor. I worried about his future. I wondered what it would hold for both of us. I hated to see him struggle so, hated to see kids shun him, not understanding what he was all about. It hurt me to my core.

I was you. But Dylan didn't get the Aspergers diagnosis until he was 11. At 3 I was told it was Sensory Integration Disorder. At 5 it was ADHD. At 7 is was Anxiety - NOS. None of those completed the puzzle for me though. I knew there was something else that we just hadn't figured out yet and now I think it was Aspergers. That's the only diagnosis I believe in now. I've left all the others behind. All of the years, I've focused more on his behaviors and not a diagnosis which was probably the best thing I did for him. I would encourage you to do that now with your children too. A diagnosis helps point you in the right direction, but all of our children fall on different parts of the spectrum, all have different personalities, different intellect, different school environments, different family environments -

so focus on what you have in front of you. Take the words you find here and let them comfort you in dark times but leave the words you don't deem as helpful for your particular situation. You know your child best, as scary as things are right now. Trust your judgment.

I'm watching my sweet son (Dylan, 11, Aspergers) sleep on the couch right now. He fell asleep talking to me while I'm on the computer. He couldn't sleep because his stomach is hurting. Another symptom of what he has to deal with on a continual basis. One of the last things he did tonight was apologize to me for being rude to me earlier today. I've had a hard day and I shared that with him earlier and he was compassionate enough, thoughtful enough of my feelings, to reach out to me and comfort me with an apology. Never thought that would've been possible when he was 3, 4, 5, 6, or 7.

My words to you...hang on. We're still on our journey, but it's amazing what he's accomplished over his 11 years on this earth. His humor, his intelligence, the strongest moral compass I've ever seen in a child in the 6th grade. He's on the path to become a man one day, a man who I suspect will make me prouder than I thought was humanly possible.

We are so glad to have you on this list. I think it's very therapeutic for us parents' who've been going through this longer to have the opportunity to impart our lessons learned and maybe even some wisdom here and there to new families.

You are not alone. It's all going to be okay...

( ) Re: New Here

I understand. My 3 1/2 year old was diagnosed last week with Asperger's. I know I have just got to breathe and make a commitment to be the help that he needs. I am so overwhelmed. >> Hi,> I may lurk for a few days until I get a feel for things, but my 4yo ds> was recently diagnosed and I'm still a little overwhelmed and soaking> up info as fast as I can. > > thanks>

[Guest guest]

Connie my anme is Sherry, i found out 1 yr ago that my now 10 yr old son has asperger's. I have found the more knowledge i have the more confident i feel, but then sometimes that too becomes overwhelming , but i still do a lot of research, looking for answers and advice, ifeel like i am on the right track, for the most part anyway. Welcome to the group i think u will find that it is very helpful, in many ways, for advice, understanding, comfort and even if u just need to vent.Good luck and God Bless, SherryEnalia <latenightanarchy@...> wrote: My

name is Connie (the name on the account is made up to help me identify scams and spammers). I found out last week also, and on one hand it has been a relief (now I know whats causing all the trouble) and on the other hand a heartbreak because I do not know how to help him or what to do. We have a long list of doctors and specialists we are lining up to see. I feel like I've been sitting in a dark closet the last few years and now with a name for whats been going on (and the fact that I'm not crazy) and finding all these other people who live with the same stuff I do, has been extremely enlightening and heartening. I read a couple pages of posts and found myself smiling with tears thinking omgosh that happens all the time, I hear you girl!. I have an older son (6 & 1/2) who is advanced (in 2nd grade). I've been married for 8 years and have a beautiful mastiff who i bought for my younger one for his first birthday

(he LOVES animals). We live in Florida and I'm sahm, who used to work in hospital laboratory, management and testing, and with the blood donation services. thank you for being warm and welcoming. Conniecharleneshawa <charleneshawa > wrote: I understand. My 3 1/2 year old was diagnosed last week with Asperger's. I know I have just got to breathe and make a commitment to be the help that he needs. I am so overwhelmed. >> Hi,> I may lurk for a few days until I get a feel for things, but my 4yo ds> was recently diagnosed and I'm still a little overwhelmed and soaking> up info as fast as I

can. > > thanks> Never miss a thing. Make your homepage.

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Caffeine has many harmful effects on the body and immune system, which you are

trying to heal when you are trying to reverse candida.

Luv,

Debby in San , CA

147 pounds lost! 100% of health issues reversed!

Group: curingcandida/

Website: http://www.naturallythriving.com

Studying nutrition for 13 years. Currently pursuing Nutritional Consultant

license.

----- Original Message ----

From: Edy Dykstra-Blum

Hi

,

My

name

is

Edy

and

have

been

diagnosed

with

candida,

Last

August

I

had

pneumonia

and

after

3

courses

of

anitbiotics

my

symtoms

started.

Since

1

week

I

am

on

the

diet

and

take

caprylic

acid

and

olive

leaf

oil

,

waiting

for

other

products

to

arrive,

my

first

quistion

is

:

why

can

I

not

have

coffee???????????/,

that

is

the

worst

part

not

be

able

to

have

1

cup

of

coffee

in

the

morning

Edy

[Guest guest]

You CAN have coffee, Edy; avoiding it is one of the " candida myths "

we've busted on this list. Avoid the sugar tho'.

Duncan

>

> Hi , My name is Edy and have been diagnosed with candida, Last August

I

> had pneumonia and after 3 courses of anitbiotics my symtoms started.

>

> Since 1 week I am on the diet and take caprylic acid and olive leaf

> oil , waiting for other products to arrive, my first quistion is :

why

> can I not have coffee???????????/, that is the worst part not be able

> to have 1 cup of coffee in the morning

>

> Edy

>

[Guest guest]

I agree with Debby but point out that in moderation, which was the

question, coffee is OK, especially that couple of cups to start off

the day.

Duncan

>

> Caffeine has many harmful effects on the body and immune system,

which you are trying to heal when you are trying to reverse candida.

>

>

> Luv,

> Debby in San , CA

> 147 pounds lost! 100% of health issues reversed!

> Group: curingcandida/

> Website: http://www.naturallythriving.com

> Studying nutrition for 13 years. Currently pursuing Nutritional

Consultant license.

>

>

>

>

>

> ----- Original Message ----

> From: Edy Dykstra-Blum

>

> Hi

> ,

> My

> name

> is

> Edy

> and

> have

> been

> diagnosed

> with

> candida,

> Last

> August

> I

> had

> pneumonia

> and

> after

> 3

> courses

> of

> anitbiotics

> my

> symtoms

> started.

>

> Since

> 1

> week

> I

> am

> on

> the

> diet

> and

> take

> caprylic

> acid

> and

> olive

> leaf

> oil

> ,

> waiting

> for

> other

> products

> to

> arrive,

> my

> first

> quistion

> is

> :

> why

> can

> I

> not

> have

> coffee???????????/,

> that

> is

> the

> worst

> part

> not

> be

> able

> to

> have

> 1

> cup

> of

> coffee

> in

> the

> morning

>

> Edy

>

>

>

>

>

>

[Guest guest]

Sorry I do agree with you Duncan, even though it didn't seem that way. Ideally

I'd say avoid coffee but I don't think in moderation it's going to be harmful.

Mostly I was saying why in an ideal world I wouldn't recommend it for a Candida

sufferer or typical diet. Plus there are much worse things you can eat like

trans-fat.

Luv,

Debby in San , CA

147 pounds lost! 100% of health issues reversed!

Group: curingcandida/

Website: http://www.naturallythriving.com

Studying nutrition for 13 years. Currently pursuing Nutritional Consultant

license.

----- Original Message ----

From: Duncan Crow

I

agree

with

Debby

but

point

out

that

in

moderation,

which

was

the

question,

coffee

is

OK,

especially

that

couple

of

cups

to

start

off

the

day.

Duncan

---

In

candidiasis ,

Debby

Padilla-Hudson

<debbypadilla@...>

wrote:

>

>

Caffeine

has

many

harmful

effects

on

the

body

and

immune

system,

which

you

are

trying

to

heal

when

you

are

trying

to

reverse

candida.

[Guest guest]

Hi Jae's Mom,

Glad you found this group. Many here can help with Question's you may

have. Just ask and you will get a response. I am in Georgia.

Robbin

**************It's Tax Time! Get tips, forms, and advice on AOL Money &

Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001)

[Guest guest]

Hi Kellie,

Welcome to the group! I am pretty new here as well. My daughter nne has

poly jra. She is 9 now, and was diagnosed at 3. She is currently taking mtx,

and the embrel shots. I have found this to be a great group! They are very

supportive, and are very helpful in answering questions.

Helen

(DC area)

New here

Hello everyone!

This group was recommended to me for extra support.

My 2 and 1/2 yr old daughter has systemic jra. She was dx last year, and it has

been an up hill battle. She presented first with MAS at 11 months, and the

arthritis, rash, fever ect. came months later.

Things have been difficult lately, as we can not wean the steroid. She has been

on high dose for most of the past year. She is also taking mtx and kineret. She

has been having a nasty flare for months now despite the meds and high dose

steroid. I am a little concerned, b/c she now has a cataract.

Ped rheum is talking about rilonacept when its available, and/or putting her in

the study for MRA when it starts.

I hope everyone can share their experiences.

Looking foward to hearing from you.

Jae's mom

____________ _________ _________ _________ _________ _________ _

Never miss a thing. Make your home page.

http://www.. com/r/hs

[Guest guest]

Welcome. So sad to hear about all you have been through and are in

the midst of going through. It is such an out of control feeling to

when nothing seems to be able to stop the pain and issues. Hugs to

you and your daughter.

-Hadley (Isabelle, 4 yrs, JRA dx age 2)

>

> Hello everyone!

> This group was recommended to me for extra support.

> My 2 and 1/2 yr old daughter has systemic jra. She was dx last

year, and it has been an up hill battle. She presented first with MAS

at 11 months, and the arthritis, rash, fever ect. came months later.

> Things have been difficult lately, as we can not wean the steroid.

She has been on high dose for most of the past year. She is also

taking mtx and kineret. She has been having a nasty flare for months

now despite the meds and high dose steroid. I am a little concerned,

b/c she now has a cataract.

> Ped rheum is talking about rilonacept when its available, and/or

putting her in the study for MRA when it starts.

> I hope everyone can share their experiences.

> Looking foward to hearing from you.

> Jae's mom

>

>

>

______________________________________________________________________

______________

> Never miss a thing. Make your home page.

> http://www./r/hs

>

>

[Guest guest]

hugs to you as you go through this. I hope you find this group very

supportive and informative.

Joann

Zoe, 6 pauci - Treating through a Naturopath

_____

From: [mailto: ] On Behalf

Of Kellie Biaglow

Sent: Wednesday, March 05, 2008 9:27 PM

Subject: New here

Hello everyone!

This group was recommended to me for extra support.

My 2 and 1/2 yr old daughter has systemic jra. She was dx last year, and it

has been an up hill battle. She presented first with MAS at 11 months, and

the arthritis, rash, fever ect. came months later.

Things have been difficult lately, as we can not wean the steroid. She has

been on high dose for most of the past year. She is also taking mtx and

kineret. She has been having a nasty flare for months now despite the meds

and high dose steroid. I am a little concerned, b/c she now has a cataract.

Ped rheum is talking about rilonacept when its available, and/or putting her

in the study for MRA when it starts.

I hope everyone can share their experiences.

Looking foward to hearing from you.

Jae's mom

__________________________________________________________

Never miss a thing. Make your home page.

http://www.. <http://www./r/hs> com/r/hs

[Guest guest]

Welcome to the group.? As others have expressed,it is a sad thing to know that

yet another child is dealing with this disease, yet we know they are out there -

so better to know who we/they are and have a place to provide comfort, seek

answers and vent when that is all that is needed.? I don't know how I would have

managed the first few years or our JRA journey without this group - and though I

don't post as often as I did in the past, I keep a watchful eye when I can and

keep all here in my thoughts and prayers.

?

Whoo, where did that ramble come from?? I do have a tendency at times to be

wordy, so I will apologize now.

?

I am so sorry to hear that Jae has been so very ill, and that the attempts to

control the flares and wean from the steriods have been so difficult.? My son is

now 10 and was diagnosed with systemic onset JRA when he was 3.? Before

diagnosed he was very ill - in and out of the hospital, and when treated for a

kidney disorder (he'd been diagnosed with that when he was 2), the symptoms

eased, and as we weaned him from the steriods used to treat his kidneys, the

symptoms came back with a vengance.? He was finally admitted with the admiting

dx of MAS and R/O Systemic JRA.? That day he couldn't move, there didn't seem to

be a part of his body that wasn't inflammed, enlarged or something.? I really

though I might lose him that day, but he responded quickly to the IV steriods

and though he left the hospital still flaring, I began to see that there was

hope that we would find a way to if not beat it, then manage it somehow.

Looking back now it's hard to believe how long we continued with the steriod

battle - he would flare, the steriod dose would be increased by a greater % with

each flare, he would get better - sometimes quickly, sometimes painfully slow -

numerous admissions, intensive monitoring sometimes as his heart and lungs would

be involved as well as the liver and spleen - sometimes in and out for an IV

pulse and a prayer and we would continue on.? Unbelieveable progress at times

with the steriods, and the added cyclosporine - and once it took a year to

finally see normal lab results.? I won't forget that day, because I did a double

take when I looked at a lab report with no *** and laughed out loud.? His

steriod dose was at an all time low and his exam was great and he was doing so

well.? Three days later he was sicker than ever and back in the hospital.? That

was the last time I laughed at lab results.? Anyway, we played the up and down

with the steriods far too long.? I fault myself with not stomping my feet and

forcing the issue of trying something more than the steriod/cyclosporine combo

that wasn't allowing us to wean off the steiods.? We finally added methotrexate,

and he has done fabulously since then.? We are still on a low dose of steriods -

and hope to end that in the near future.? He hasn't had cataracts - but has many

of the side affects associated with steriods.? He does have osteopenia, and had

a compression fracture of one of his vertebrae two years ago.? Additionally his

side affects include growth delay, hypertension, stretch marks, osteopenia &

fracture - I don't think I am leaving anything out.? Our plan was to start

kineret possibly after trying the mtx - if it didn't work, though we may have

had to try enbrel first.? has done wonderfully in the last 2 1/2 years

after starting the mtx.

I am so sorry that kineret hasn't been the answer for Jae - many systemic kids

seem to have such good results with it.? I hope that you soon find the right mix

for Jae and that she improves quickly.?

Val

Rob's Mom (10,systemic)

New here

Hello everyone!

This group was recommended to me for extra support.

My 2 and 1/2 yr old daughter has systemic jra. She was dx last year, and it has

been an up hill battle. She presented first with MAS at 11 months, and the

arthritis, rash, fever ect. came months later.

Things have been difficult lately, as we can not wean the steroid. She has been

on high dose for most of the past year. She is also taking mtx and kineret. She

has been having a nasty flare for months now despite the meds and high dose

steroid. I am a little concerned, b/c she now has a cataract.

Ped rheum is talking about rilonacept when its available, and/or putting her in

the study for MRA when it starts.

I hope everyone can share their experiences.

Looking foward to hearing from you.

Jae's mom

__________________________________________________________

Never miss a thing. Make your home page.

http://www./r/hs

[Guest guest]

Kellie,

a warm welcome to our group. I hope you will find comfort and support here -

there are many parents of systemic children who can share their knowledge and

experience, like Coleen and Val, and all of us can lend a listening ear and

encouragement.

I am sorry it has been such a discouraging battle so far...I will be praying

that Jae will be able to get into a study/trial with some meds that will help

her.

(, 17, poly, cvid, migraines)

Kellie Biaglow <kelliebiaglow@...> wrote:

Hello everyone!

This group was recommended to me for extra support.

My 2 and 1/2 yr old daughter has systemic jra. She was dx last year, and it

has been an up hill battle. She presented first with MAS at 11 months, and the

arthritis, rash, fever ect. came months later.

Things have been difficult lately, as we can not wean the steroid. She has

been on high dose for most of the past year. She is also taking mtx and kineret.

She has been having a nasty flare for months now despite the meds and high dose

steroid. I am a little concerned, b/c she now has a cataract.

Ped rheum is talking about rilonacept when its available, and/or putting her in

the study for MRA when it starts.

I hope everyone can share their experiences.

Looking foward to hearing from you.

Jae's mom

__________________________________________________________

Never miss a thing. Make your home page.

http://www./r/hs

[Guest guest]

i know sometimes in really severe cases, some people have looked at doing

autologus bone marrow transplant. It's dangerous... but so is untreated or

uncontrollable sysJRA.

I know one parent who did a consultation with a specialist as her daughter

wasn't responding to anything for a long time however finally at one point,

she did well with higher than typically used doses of remicade. Some ped

rheumatologist can be very aggressive and willing to think outside the box

since sometimes the doses just aren't enough even when that's the

'acceptable/researched level'.... the body is still smarter to overcome that

so maybe the doctor needs to be talked to about being even more aggressive

if possible in terms of increase doses or something... i dont know...

whatever the case, I'm sorry to hear that things have been so incredibly

difficult. I know one other family with a boy wirth sys JRA and he really

was so sick for so long. I haven't been in contact with them.. loss contact

but last I know he was 8 and had necrotic hips.. needing hip replacements

which of course the doctors wanted to wait since he's so little and has

hardly grown. I know he was on pain killers and needing a wheelchair most

times. I wonder how they are right now. Sometime sSystemic can be incredibly

difficult and I think a lot of doctors find the territory harder to make

decisions in since its rare to have it so out of control. those steriods

sure are nasty creatures though they can make life bareable.

Hugs

Issadora

On Thu, Mar 6, 2008 at 1:50 PM, nancy barnes <nancyb315@...> wrote:

> Kellie,

>

> a warm welcome to our group. I hope you will find comfort and support here

> - there are many parents of systemic children who can share their knowledge

> and experience, like Coleen and Val, and all of us can lend a listening ear

> and encouragement.

>

> I am sorry it has been such a discouraging battle so far...I will be

> praying that Jae will be able to get into a study/trial with some meds that

> will help her.

>

> (, 17, poly, cvid, migraines)

>

> Kellie Biaglow <kelliebiaglow@... <kelliebiaglow%40>>

> wrote: Hello everyone!

> This group was recommended to me for extra support.

> My 2 and 1/2 yr old daughter has systemic jra. She was dx last year, and

> it has been an up hill battle. She presented first with MAS at 11 months,

> and the arthritis, rash, fever ect. came months later.

> Things have been difficult lately, as we can not wean the steroid. She has

> been on high dose for most of the past year. She is also taking mtx and

> kineret. She has been having a nasty flare for months now despite the meds

> and high dose steroid. I am a little concerned, b/c she now has a cataract.

> Ped rheum is talking about rilonacept when its available, and/or putting

> her in the study for MRA when it starts.

> I hope everyone can share their experiences.

> Looking foward to hearing from you.

> Jae's mom

>

> __________________________________________________________

> Never miss a thing. Make your home page.

> http://www./r/hs

>

>

[Guest guest]

I would see if your body can handle it, mine does not.SJ

Re: New here

> You CAN have coffee, Edy; avoiding it is one of the " candida myths "

> we've busted on this list. Avoid the sugar tho'.

>

> Duncan

>

>

>>

>> Hi , My name is Edy and have been diagnosed with candida, Last August

> I

>> had pneumonia and after 3 courses of anitbiotics my symtoms started.

>>

>> Since 1 week I am on the diet and take caprylic acid and olive leaf

>> oil , waiting for other products to arrive, my first quistion is :

> why

>> can I not have coffee???????????/, that is the worst part not be able

>> to have 1 cup of coffee in the morning

>>

>> Edy

>>

>

>

>

>

>

[Guest guest]

Jae's Mom - our Hunter is systemic and is doing fairly well with treatment

(dx in Feb 2004). But we do have a friend whose daughter is 12 and she has

been having trouble since about 2 years of age. She is finally off the

steriod but she has had a lot of issues - also a cateract at an early age.

She

does not belong to this website. I can ask her if I can give you her email

address. As I said - she did not respond to many of the drugs that are out

there and was unable to MTX for years. Now she is old and is on Enbrel and

MTX.

Hope things go better for your child soon. Sandi Ken and Hunter (9 Systemic)

**************It's Tax Time! Get tips, forms, and advice on AOL Money &

Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001)

[Guest guest]

Welcome to the group!~!!!

http://www.cafepress.com/autismawarenes

-- ( ) New here

Hi - I'm Lynn. My daughter, 11 has Asperger's. She was diagnosed whenshe was 8. We live in Northern Va and basically here to see if there is anyone inour area to connect with. Lynn

[Guest guest]

Hi Lynn, We are also in Northern Va. My son is 10 and was diagnosed with Asperger's when he was 8. I've been looking around for social groups or social skill classes for him to attend. If you know of any, let me know. el_andme <el_andme@...> wrote: Hi - I'm Lynn. My daughter, 11 has Asperger's. She was diagnosed whenshe was 8. We live in Northern Va and basically here to see if there is anyone inour area to connect with.

Lynn

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