Update on

[Guest guest]

Christene,

I don't have the experience with systemic JRA but two families I met

today in Georgia do. I would have to agree with the other replies to

this post -- it *could* still be systemic JRA. I realize the doctors

want to be sure but please have them consider treating the probable

systemic JRA ASAP as they are ruling out other things.

The two families from today:

A four year old boy with small pin prick rashes that grew to quarter

size within hours. A high 105 degree sustained fever. Pain and

inability to walk. The great news: a tough couple months but he is

in complete remission a year later and is finally off all meds.

A seven year old boy with rashes mostly on the stomach. Excruciating

pain. Also a high 105 (or even 106) degree fever. A sustained

fever, high and low, over a two month period. Pain so bad he

couldn't get out of bed and had to be carried for two weeks (even to

the bathroom). Good news: in almost complete remission a year later

with only very minor flares and currently being tapered off of

methotrexate (MTX) I believe.

In both cases, these boys were treated aggressively for systemic JRA

by the same pediatric rheumatologist before the " official " diagnosis

could be made weeks (or months) later.

Just more food for thought. Sometimes the parents' experience will

provide more information than some of the doctors' opinions. In just

a few families I spoke with today almost everybody had " fired " a

pediatrician, pediatric rheumatologist, and/or a pediatric

ophthamologist. My HMO admitted that in " rare " diseases the parents

may end up doing the research and bringing probable treatments to the

table with the HMO finally using the information and agreeing (when

their initial course of action was haphazard at best initially).

Hang in there!

Steve (le - 4; pauci + uveitis)

We had our appointment with the

endocrinologist today. He does not think

> 's problems are thyroid related but did take more blood to be

sure he can

> completely rule that out. After seeing 's foot purple for

nearly a full

> day I again called her neurologist to see if there was any chance

her seizure

> med's could be causing some of her problems. She has been on them

for so

> long and I just wonder. When he called me back last night he has

decided to

> wean her off of both of her seizure med's. She has not had a

seizure for several

> years and he was planning to start weaning her off them in April at

our next

> appt. any way. So he decided to start now. He does not think these

med's are

> the cause of her problems but does think it is possible that they

could

> contribute to the JRA problems. So we begin a fairly rapid

decrease in her meds.

> She has been on Depakote for six years and we will take her off in

10 days.

> I trust her neurologist completely but it is a bit scary taking

her off it

> that quickly. As long as she tolerates that well we will then

begin to wean

> her off of her Keppra. The Ped. office called back today and we do

not know

> when she will get into the oncologist yet but should know

something by Monday.

> With all the troubles we have been having they seem to think we

should be

> able to get in real soon. has had two good days compared

to the last few

> weeks. She is still very stiff and sore but her smile is back and

she has a

> bit more energy then she has for a while. Every little bit is

encouraging. I

> do ask for prayers for her as she goes off the seizure med's and

as we go to

> see the oncologist.

>

> Veri & Jaye 12 poly

>

>

>

[Guest guest]

Hi,

I wish Stacia would reply to your questions and concerns.Her son Hunter went

about 4 yrs before diagnosing him with SoJRA.

He had the systemic symptoms but not the obvious swollen joints.They seen

specialist after specialist to no avail.

It is still a sore subject for her but since diagnosis and receiving the

right drugs at the right dose he is doing well,as far as I know.

Unfortunately for some the classic Arthur symptoms just don't present

themselves in the beginning.

The pain and screaming and crying you describe still sounds like myalgas(all

over body wide muscle pain)very common with systemics.

I think it was Val's Robbie but mayby someone elses.They got home and had to

go up 3 flights of stairs to get inside.The myalgas were so bad he refused to

be carried and it too over 2 1/2 hours for him to creap and crawl up those

stairs by himself.

I recall s last systemic flair in 2002 and we were next door.One minuite

he was running around as best he could and the next he was on the floor using

his forearms to pull his body.He refused to let me carry him,he bellied

himself through the house,down 3 steps and half way to our house.I hollered for

his

daddy and he picked him up. started screaming to put him down that he

was hurting him.He threw a fit over the pain of just touching him.At the time he

had a realy high pain tolerance but the myalgas were just too much.

Hang tight and tough and God will get you through.

Love hugs and prayers

Becki and 7 systemic

[Guest guest]

Good Evening Everyone! Thanks for all your thoughts and prayers and feedback.

I am sorry if I upset anyone in regards to what the Ped Rheumy said to me about

being in too much pain to have JRA. I truly believe in my heart he has the

Systemic JRA...it's that gut feeling that I have. Tomorrow is the big day for

us. My in-laws came up from PA to offer their support and they too believe it's

arthritis. Did any of you/children that have JRA experienced such mood swings

and loss of appetite? screams when we give him a bath or put him in a hair

chair...it's pure agony and we don't know if it " hurts " him or what. Well I

will definitely let you know how we made out...again thanks for being there for

me...I truly need you in my life! I forgot to mention that I work Saturday

through Monday from 4:00 a.m. to 4:30 p.m. so I am not on much during the

weekend. Please continue your prayers for and his family and I am thinking

of all of you as well. CHRISTENE

gabrielles_parents <dlbeer@...> wrote: Christene,

I don't have the experience with systemic JRA but two families I met

today in Georgia do. I would have to agree with the other replies to

this post -- it *could* still be systemic JRA. I realize the doctors

want to be sure but please have them consider treating the probable

systemic JRA ASAP as they are ruling out other things.

The two families from today:

A four year old boy with small pin prick rashes that grew to quarter

size within hours. A high 105 degree sustained fever. Pain and

inability to walk. The great news: a tough couple months but he is

in complete remission a year later and is finally off all meds.

A seven year old boy with rashes mostly on the stomach. Excruciating

pain. Also a high 105 (or even 106) degree fever. A sustained

fever, high and low, over a two month period. Pain so bad he

couldn't get out of bed and had to be carried for two weeks (even to

the bathroom). Good news: in almost complete remission a year later

with only very minor flares and currently being tapered off of

methotrexate (MTX) I believe.

In both cases, these boys were treated aggressively for systemic JRA

by the same pediatric rheumatologist before the " official " diagnosis

could be made weeks (or months) later.

Just more food for thought. Sometimes the parents' experience will

provide more information than some of the doctors' opinions. In just

a few families I spoke with today almost everybody had " fired " a

pediatrician, pediatric rheumatologist, and/or a pediatric

ophthamologist. My HMO admitted that in " rare " diseases the parents

may end up doing the research and bringing probable treatments to the

table with the HMO finally using the information and agreeing (when

their initial course of action was haphazard at best initially).

Hang in there!

Steve (le - 4; pauci + uveitis)

We had our appointment with the

endocrinologist today. He does not think

> 's problems are thyroid related but did take more blood to be

sure he can

> completely rule that out. After seeing 's foot purple for

nearly a full

> day I again called her neurologist to see if there was any chance

her seizure

> med's could be causing some of her problems. She has been on them

for so

> long and I just wonder. When he called me back last night he has

decided to

> wean her off of both of her seizure med's. She has not had a

seizure for several

> years and he was planning to start weaning her off them in April at

our next

> appt. any way. So he decided to start now. He does not think these

med's are

> the cause of her problems but does think it is possible that they

could

> contribute to the JRA problems. So we begin a fairly rapid

decrease in her meds.

> She has been on Depakote for six years and we will take her off in

10 days.

> I trust her neurologist completely but it is a bit scary taking

her off it

> that quickly. As long as she tolerates that well we will then

begin to wean

> her off of her Keppra. The Ped. office called back today and we do

not know

> when she will get into the oncologist yet but should know

something by Monday.

> With all the troubles we have been having they seem to think we

should be

> able to get in real soon. has had two good days compared

to the last few

> weeks. She is still very stiff and sore but her smile is back and

she has a

> bit more energy then she has for a while. Every little bit is

encouraging. I

> do ask for prayers for her as she goes off the seizure med's and

as we go to

> see the oncologist.

>

> Veri & Jaye 12 poly

>

>

>

[Guest guest]

Hi ,

Our family has been exactly where you are. The last straw for us

was the bone marrow procedure with a pediatric oncologist. Boy,

that was a fun procedure to witness - OMG!!!!!! I think the ped.

oncologist called us within hours of doing it to let us know that he

did not have any type of leukemia, but she was 99% convinced he had

systemic jra. She also pointed us to the right rheumy who sees most

of the kids around here (we had seen a quack, I mean rheumy, who

claimed to have ped. patients who told us that our son had no

rheumatic condition whatsoever, even after listening to and seeing

my almost 4 years of documented story !!!!)

As I posted last night, if you want to talk, email me and I'l give

you my phone number, or vice versa. I pray that the testing went

well this morning and you bring us good news (no cancer).

Stacia and Hunter 9 systemic, iritis

We had our appointment with the

endocrinologist today. He does not think

> 's problems are thyroid related but did take more blood to

be sure he can

> completely rule that out. After seeing 's foot purple for

nearly a full

> day I again called her neurologist to see if there was any chance

her seizure

> med's could be causing some of her problems. She has been on them

for so

> long and I just wonder. When he called me back last night he has

decided to

> wean her off of both of her seizure med's. She has not had a

seizure for several

> years and he was planning to start weaning her off them in April

at our next

> appt. any way. So he decided to start now. He does not think these

med's are

> the cause of her problems but does think it is possible that they

could

> contribute to the JRA problems. So we begin a fairly rapid

decrease in her meds.

> She has been on Depakote for six years and we will take her off

in 10 days.

> I trust her neurologist completely but it is a bit scary taking

her off it

> that quickly. As long as she tolerates that well we will then

begin to wean

> her off of her Keppra. The Ped. office called back today and we

do not know

> when she will get into the oncologist yet but should know

something by Monday.

> With all the troubles we have been having they seem to think we

should be

> able to get in real soon. has had two good days compared

to the last few

> weeks. She is still very stiff and sore but her smile is back and

she has a

> bit more energy then she has for a while. Every little bit is

encouraging. I

> do ask for prayers for her as she goes off the seizure med's and

as we go to

> see the oncologist.

>

> Veri & Jaye 12 poly

>

>

>

[Guest guest]

Hi Christene,

Too much pain to be JRA? Too sick to be JRA? If you could see my face you

would be able to see that I am still unable to close my mouth and my eyebrows

are probably up near my hairline.

However, it is very important to rule out (or correctly diagnose leukemia) to be

sure that receives the proper treatment - so please don't think that I

question that part of the doctors plan. But I would be inclined to question

whether or not your pedi rheumatologist is indeed a pedi rheumatologist - if he

or she really is, then I would next question how many systemic onset patients he

or she has treated, as well as how much experience he or she has actually had

treating chrildren with arthritis.

Leukemia was one of the illnesses/diseases ruled out when my Robbie was first so

deathly ill. He was also admitted with probable MAS. (Macrophage Activation

Syndrome) He was three, almost four years old. He couldn't stand to be touched

- but was in too much pain to try to walk - at 3 he was problem solving and

decided that If I wrapped him in a blanket it would be less painful for him to

be carried.

When Robbie was admitted for the second time with his JRA symtptoms (this was

the admission where the final diagnosis was made) - he was lethargic, anemic,

unable to move on his own, didn't want to be touched due to the pain, his liver

and spleen were enlarged significantly, he had inflammation in his lungs and

around his heart. He had conjunctivits, tonsilitis and appeared to have an ear

infection. There wasn't a part of him that wasn't affected by this horrible

disease. He had several inflammed joints as well - but has been admitted with

strictly systemic symptoms, with pain all over, but no noticable inflammation in

his joints. Too much pain? I still can't get over that comment. It makes me

think that the doctor truly has no idea what children with arthritis go through.

Too sick. Someone needs to tell that doctor that children die from

complications of systemic onset JRA. That doctor should have witnessed my baby

waking screaming in the middle of the night with pain in his elbos - and all

over - and listened to him cry as I held him and rocked him waiting for his

pediatrian's office to open, praying that the 104.5 fever would break soon. Too

sick? Give me a break.

Chistene, please know that it is very hard to diagnose, and the doc does need to

consider all possibilities. You and are in my prayers.

Val

Rob's Mom (8,systemic)

Re: Update on

The Pediatric Rheumy doctor felt that was in too much pain to have JRA and

had a Pediatric Hematology/Oncology look at him. She too felt that he was too

sick acting to have arthritis so once again another blood test and an ultrasound

was done on him to check for tumors/masses and see if he's showing any signs of

leukemia. His liver and spleen or pancreas were enlarged and he's more anemic

than he was a week ago. The good news is that the test didn't show any signs of

leukemia as of yet but is going to have the bone marrow test on Monday morning

at 9:00. I really don't know at this point what to think but my heart " hurt " .

Never in my wildest dream would I have thought he might have " cancer " . I guess

right now we just have to pray for . Did any of your kids acted sickly but

still had JRA? Well just want to let you know what happened...will give you the

updates on Monday.

veristroud@... wrote: We had our appointment with the endocrinologist

today. He does not think

's problems are thyroid related but did take more blood to be sure he can

completely rule that out. After seeing 's foot purple for nearly a full

day I again called her neurologist to see if there was any chance her seizure

med's could be causing some of her problems. She has been on them for so

long and I just wonder. When he called me back last night he has decided to

wean her off of both of her seizure med's. She has not had a seizure for several

years and he was planning to start weaning her off them in April at our next

appt. any way. So he decided to start now. He does not think these med's are

the cause of her problems but does think it is possible that they could

contribute to the JRA problems. So we begin a fairly rapid decrease in her

meds.

She has been on Depakote for six years and we will take her off in 10 days.

I trust her neurologist completely but it is a bit scary taking her off it

that quickly. As long as she tolerates that well we will then begin to wean

her off of her Keppra. The Ped. office called back today and we do not know

when she will get into the oncologist yet but should know something by Monday.

With all the troubles we have been having they seem to think we should be

able to get in real soon. has had two good days compared to the last

few

weeks. She is still very stiff and sore but her smile is back and she has a

bit more energy then she has for a while. Every little bit is encouraging. I

do ask for prayers for her as she goes off the seizure med's and as we go to

see the oncologist.

Veri & Jaye 12 poly

[Guest guest]

Nothing I can say can express how sad I am. I think all the moms and dads here

cry for you because there isn't a time when our own chidlren are sick that we

don't fear what you are now going through. I cry for you in your loss.

Mayah (mom of Taliesen, systemic jra since 5)

________________________________________________________________________

Date: Sun, 12 Mar 2006 04:05:50 -0000

From: " Jo & Grant "

Subject: Re: UPDATE ON ALEX

Oh dear God Christene! What can I say?

I am grieving with you (my daughter is 26 months old) and my heart

goes out to you and Tom, Hannah and Zachary. Sincerest sympathies.

" Eternal rest grant to him Oh Lord,

May perpetual light shine upon him,

May he Rest In peace. "

And may God Bless your little

and may the Angels take him home.

Jo & Grant

Bayly, 3, extended oligo

Violet, 2

, 13

>

> Good Morning! As you know I have not been online the past two days

> and I will start off by saying yes that my son was diagnosed

on

> Wednesday as having JRA. Unfortunuately we are sad to say that our

> little precious is no longer with us. He passed away on

> Wednesday evening of natural causes as was told to us yesterday

> afternoon. I really don't know what else to say but I want to

thank

> you for all your support. I will leave it at that.

>

> CHRISTENE/TOM/HANNAH/ALEX (26 MONTHS SYSTEMIC JRA)/ZACHARY

>

________________________________________________________________________

________________________________________________________________________

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

[Guest guest]

Christene,

I am so sorry for your loss , your family is in my thoughts and

prayers.

Teri ( belle 11)

[Guest guest]

Hi Jen,

Happy belated Birthday! I hope you get to feeling better, sinus are just the worst.

~~

[Guest guest]

Hi Jen,

I'm sorry you've been sick - I hope you feel better

soon. Glad you had a good birthday!

Donna

--- from Michigan <volleyjen0416@...>

wrote:

> Hi Everyone, I ended up getting a bad sinus

> infection so I haven't been exercising much except

> for the usual playing volleyball and bowling. I

> then had TOM come to town which made me feel worse!

> Luckily now TOM is gone (almost) and I am going to

> start walking again (outside if the temps are in the

> mid 60's) and doing my exercise videos/dvds. I know

> that is rotten sinus infection can hang around for

> months and I can't afford to wait until I'm feeling

> 100% well because I will be setting sail at the end

> of August. I'm going on a cruise to Alaska in case

> I didn't tell you all before and I want to lose a

> few pounds before I have to buy clothes for my trip.

>

> Today (April 16th) is my birthday! I had a

> great day. I went to a Detroit Tiger Baseball game

> and went out to eat afterwards. It was a little

> chilly but the Tigers won so that's all I really

> care about

>

> Well, that's the update on me,

>

>

> Jen

>

>

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

> Love cheap thrills? Enjoy PC-to-Phone calls to 30+

> countries for just 2¢/min with Messenger with

Voice.

__________________________________________________

[Guest guest]

happy b-day jen. i was fighting an infection while fighting with this puter. hope you feel better soon. we had to do rounds of anitbiotics and singuluar for a week.get well soon kassia

Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2¢/min with Messenger with Voice.

[Guest guest]

Thanks I'm hoping that I will start feeling better soon too! Jenfitgrl222@... wrote: Hi Jen, Happy belated Birthday! I hope you get to feeling better, sinus are just the worst. ~~

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

[Guest guest]

Thanks Donna, I did have a good birthday. Trying to shake this sinus infection thing. JenDonna M-P <donna112520@...> wrote: Hi Jen,I'm sorry you've been sick - I hope you feel bettersoon. Glad you had a good birthday!Donna--- from Michigan <volleyjen0416@...>wrote:> Hi Everyone, I ended up getting a bad sinus> infection so I haven't been exercising much except> for the usual playing volleyball and bowling. I> then had TOM come to town which made me

feel worse! > Luckily now TOM is gone (almost) and I am going to> start walking again (outside if the temps are in the> mid 60's) and doing my exercise videos/dvds. I know> that is rotten sinus infection can hang around for> months and I can't afford to wait until I'm feeling> 100% well because I will be setting sail at the end> of August. I'm going on a cruise to Alaska in case> I didn't tell you all before and I want to lose a> few pounds before I have to buy clothes for my trip.> > Today (April 16th) is my birthday! I had a> great day. I went to a Detroit Tiger Baseball game> and went out to eat afterwards. It was a little> chilly but the Tigers won so that's all I really> care about > > Well, that's the update on

me,> > > Jen> > > ---------------------------------> Love cheap thrills? Enjoy PC-to-Phone calls to 30+> countries for just 2¢/min with Messenger withVoice.__________________________________________________

[Guest guest]

Hi -

Sorry I haven't written in a while - I've been crazy and we're getting ready

to move soon (unexpected) so I haven't had a lot of free time, but think

about you and often.

As far as what to tell them.... If I recall, the other place is closer, no?

Perhaps, you can use that angle. If you're working with a state agency or

school case manager, discuss it with them and let them know. It would be

great if the " closer to home " would work. The fact that she's surviving where

she is I think speaks that she is stable. My daughter was moved from one

residential to another program (at their request). They were very kind though

-

they explained it to her as she did not fail the program, the program failed

her and was not the correct match (this was a co-ed program - definite

nightmare).

Everything you're describing is very familiar. See, when my daughter went

to Residential, although bipolar, she NEEDED behavior modification. Also, she

need to be safe and I couldn't keep her safe at home any more. These

residential facilities are geared not so much towards an OCD program or bipolar

program, etc but behavior modification for these kids. Some of the things you

describe are exactly what I also witnessed. BUT, in the long run, there

really was a reason. My daughter needed to understand that yes, she had

bipolar,

BUT she also needed to learn how to live amongst society and behave

appropriately and independently if she were to have any chance at success.

Yes, she

hated it and complained, but at the same time made friends as is and

enjoyed helping other residents (underneath her " tough persona " of course).

Although at the time I felt exactly what you are feeling, looking back I

wouldn't have done it any other way. My daughter is the success she is today

because of my " tough love " back then. She readily admits this to me almost

every

day. I'm proud of the beautiful young woman she has developed into.

Well, I'm glad you're keeping us updated - I'll write again soon - It's been

crazy hectic and well - not a lot of time in between. I am glad you got to

spend part of Mother's Day with and I'm sure she TOTALLY APPRECIATED

it. It sounds like you saw some kind of change or " gentleness " to her on the

visit. I'm glad it was a successful albeit short visit.

Keep us posted and I'll e-mail you soon - PROMISE!

In a message dated 5/15/2006 6:03:33 PM Central Standard Time,

Kidztalent@... writes:

They said if the place she's in now will just confirm that is

stable, they will take her. Now....the thing is....what do I say to them?

I'm

afraid they could get nastier, and won't say that is stable....just

so

the other place won't take . Geeze.....I feel like I have no control

of anything.

Well I need to go make some phone calls and see what happens.

I'll let you know,

[Guest guest]

I am so sorry to hear that - I wish I could help but being in New Zealand it is

a long way LOL. I really could not believe this when I read it (I do believe it)

but can not believe this is still happening in homes. My heart goes out to you

and just reading this post makes me angry and upset.......... Take care and Big

Cyber {{{HUGS}}} from little old New Zealand.

Cheers Jaxx

Update on

Hi everyone...

I hope you all had a nice Mother's Day. Mine was sort of bittersweet I

guess...for lack of a better word.

Well I thought I'd update you on and the residential facility she's

in. I've been trying to give it a chance even though I'm not happy about her

therapist there not " totally buying the whole OCD thing " . really had a

good week there last week. She got an award for doing her own program that

she made herself for her OCD....since the therapist wasn't willing to do

anything to help her with her OCD. took it upon herself to do her own

exposure-response therapy with the help of some of the other kids she's gotten

to

know there. She also earned her way up to the next level where she gets a few

more privileges and hit " peak " with earning points on a daily basis which

also gets extra privileges. She also helped her roommate to earn the next

level

as well. Her roommate has been there for 5 months and was still on the bottom

level....so helped her and herself to make it to the next level

together. She also took it upon herself to run for " exec " and won....which

her

therapist said is very rare that a kid wins first time running. So all in

all...program-wise....she had a great week. So since earning the next

level....she

was supposed to be given the privilege of an overnight at home over the

weekend. Her therapist told me that she thought it might be better for

though if I just got a hotel locally (it's 2 hours away)...because she was

afraid that may not want to return if I took her home. So I was fine

with

that especially with the long ride and it being only one night. Well

was all excited cause she earned this overnight in time for Mother's Day.

She's

always made a big deal over Mother's Day. Well the stupid therapist decided

that even though had an excellent week...that didn't deserve an

overnight cause she thought maybe was only doing such a good job last

week so that she could have an overnight. What the hell???????!!!!!!!

Whatever 's reason was for having such a good week and really working

the

program..............whatever!!! She did great!! Doesn't that earn some

praise????? What bullsh*t!!!! She totally earned the overnight privilege and

had it

taken away anyway!!! That is just wrong!!!!! I was so pissed!!!! was

in tears. She said it never matters how well she does there.....there's never

any praise.....and nothing is good enough. How the hell is this place

supposed to be raising her self esteem?? I'm over giving them a chance. So

anyway....all they allowed was 2 hours off grounds with me. Of course I

tried

to make feel everything was fine and not to be upset. I took her to

shopping. She wanted to get me something for Mother's Day. She bought me 2

Chicken Soup for the Mother's Soul books. She loves all those Chicken Soup

books

and has always tried to get me to read them. She even let me hug and kiss

her in the mall. In the past, she never even wanted to be seen with me let

alone

hug or kiss her! Then we picked up something to eat and went back to the

facility and had a picnic on the grounds just outside her dorm. While we were

sitting there a girl inside had a huge meltdown. You could hear her outside

screaming and banging things. said this girl does this almost every

day.

feels sorry for her. She said the staff is really mean to this girl

and pushes her to the tantrum....then they laugh at her. At first, I didn't

totally believe that the staff makes fun of the girl. But then a

couple

other staff members walked by us outside and they were totally mocking and

laughing at the girl.....right in front of me!!! I was shocked!! So I can

only

imagine how it is when I'm not around. So I've decided I'm definitely getting

her out of there. I called the place that was originally supposed to

go to. (the place we took her to where she became really nasty and

threatening and then ended up in the hospital) I told them has been in

this

other facility and asked what it would take for them to reconsider taking

again. They said if the place she's in now will just confirm that is

stable, they will take her. Now....the thing is....what do I say to them? I'm

afraid they could get nastier, and won't say that is stable....just so

the other place won't take . Geeze.....I feel like I have no control

of anything.

Well I need to go make some phone calls and see what happens.

I'll let you know,

[Guest guest]

That’s

a lovely story! Thank you for sharing it. Sara x

Update on

Hi All

Just a quick update on my

(one of many I see!). is 7 years old and was diagnosed with

autism at age 3. We started on the GFCF/Sugar free diet before his

diagnosis due to severe ezcema. For the first 2 years, we focussed

heavily on ABA which worked well for and enabled him to integrate full

time into mainstream.

After that we have been

majoring on biomed and are under Dr Usman in the US. We have been

chelating and using MB12 for 18 months.

Recently we have started

MB12 shots on a daily basis and have also introduced oral EDTA in addition to

td-DMPS (Buttar Protocol). is still dumping metals, mainly in the

fecal sample. Nickel and cadmium levels have now dropped, as has mercury.

More lead, antimony and uranium (where the F*** does that come from!) are

coming out. Beryllium, Lead, nickel and tungsten are in the yellow, all

the rest in the green.

We have also been doing

brushing therapy for the last 10 months to work on primative retained reflexes.

The big news is that

is now in love!! He has been admiring a rather cute brunette in

his class for a while, but I don't think she knew of his affection til he did a

lightening raid in the classroom - ran up, quick kiss and retreated! Just

before half term he came home with a card in his book bag saying 'Dear , I

love you!' annonymous but he claimed it was from O and told us 'She

doesn't run away from me anymore.' We all agreed that was a breakthrough.

Anyway, on thursday

last week he came home with another love note, this time signed. My dd

and I launched into questioning mode and it turns out that he has kissed

her on the forehead and cheek and hugged her and she has 'kissed me a hundred

times all over my face'. What is he like!! Apparently 'She

liked it!' and 'We are going to get married'. Had to tell his LSA

that I was shocked that this was going on in school!!

OMG, my 10 year old

NT dd has never even looked at boys and here is , who I cried bucket loads

of tears over cos he would never have friends, making rather too

rapid gains with the opposite sex! At his annual review last week, the

SENCO reported he and his best friend Ben had been discussing which of their

cousins had kissed and sniggering in that lovely boy way.

Couldn't imagine we would

ever be here - reading is the next major target for us, seems to have

dyslexia. We are doing Fast Forward to reading in the holidays (a

computer based programme from the US)

I'll keep you informed if

it works miracles!

Tina

--

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No virus found in this outgoing message.

Checked by AVG Free Edition.

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[Guest guest]

That’s

a lovely story! Thank you for sharing it. Sara x

Update on

Hi All

Just a quick update on my

(one of many I see!). is 7 years old and was diagnosed with

autism at age 3. We started on the GFCF/Sugar free diet before his

diagnosis due to severe ezcema. For the first 2 years, we focussed

heavily on ABA which worked well for and enabled him to integrate full

time into mainstream.

After that we have been

majoring on biomed and are under Dr Usman in the US. We have been

chelating and using MB12 for 18 months.

Recently we have started

MB12 shots on a daily basis and have also introduced oral EDTA in addition to

td-DMPS (Buttar Protocol). is still dumping metals, mainly in the

fecal sample. Nickel and cadmium levels have now dropped, as has mercury.

More lead, antimony and uranium (where the F*** does that come from!) are

coming out. Beryllium, Lead, nickel and tungsten are in the yellow, all

the rest in the green.

We have also been doing

brushing therapy for the last 10 months to work on primative retained reflexes.

The big news is that

is now in love!! He has been admiring a rather cute brunette in

his class for a while, but I don't think she knew of his affection til he did a

lightening raid in the classroom - ran up, quick kiss and retreated! Just

before half term he came home with a card in his book bag saying 'Dear , I

love you!' annonymous but he claimed it was from O and told us 'She

doesn't run away from me anymore.' We all agreed that was a breakthrough.

Anyway, on thursday

last week he came home with another love note, this time signed. My dd

and I launched into questioning mode and it turns out that he has kissed

her on the forehead and cheek and hugged her and she has 'kissed me a hundred

times all over my face'. What is he like!! Apparently 'She

liked it!' and 'We are going to get married'. Had to tell his LSA

that I was shocked that this was going on in school!!

OMG, my 10 year old

NT dd has never even looked at boys and here is , who I cried bucket loads

of tears over cos he would never have friends, making rather too

rapid gains with the opposite sex! At his annual review last week, the

SENCO reported he and his best friend Ben had been discussing which of their

cousins had kissed and sniggering in that lovely boy way.

Couldn't imagine we would

ever be here - reading is the next major target for us, seems to have

dyslexia. We are doing Fast Forward to reading in the holidays (a

computer based programme from the US)

I'll keep you informed if

it works miracles!

Tina

--

No virus found in this incoming message.

Checked by AVG Free Edition.

Version: 7.1.394 / Virus Database: 268.8.3/360 - Release Date: 09/06/2006

--

No virus found in this outgoing message.

Checked by AVG Free Edition.

Version: 7.1.394 / Virus Database: 268.8.3/360 - Release Date: 09/06/2006

[Guest guest]

This is HUGE - well done him!!

Anne-Marie

-- In Autism Treatment , " Sass and Rem "

<Moroza-@...> wrote:

>

> That's a lovely story! Thank you for sharing it. Sara x

>

>

>

> Update on

>

>

>

> Hi All

>

>

>

> Just a quick update on my (one of many I see!). is 7

years old

> and was diagnosed with autism at age 3. We started on the

GFCF/Sugar free

> diet before his diagnosis due to severe ezcema. For the first 2

years, we

> focussed heavily on ABA which worked well for and enabled him

to

> integrate full time into mainstream.

>

>

>

> After that we have been majoring on biomed and are under Dr Usman

in the US.

> We have been chelating and using MB12 for 18 months.

>

>

>

> Recently we have started MB12 shots on a daily basis and have also

> introduced oral EDTA in addition to td-DMPS (Buttar Protocol).

is

> still dumping metals, mainly in the fecal sample. Nickel and

cadmium levels

> have now dropped, as has mercury. More lead, antimony and uranium

(where

> the F*** does that come from!) are coming out. Beryllium, Lead,

nickel and

> tungsten are in the yellow, all the rest in the green.

>

>

>

> We have also been doing brushing therapy for the last 10 months to

work on

> primative retained reflexes.

>

>

>

> The big news is that is now in love!! He has been admiring a

rather

> cute brunette in his class for a while, but I don't think she knew

of his

> affection til he did a lightening raid in the classroom - ran up,

quick kiss

> and retreated! Just before half term he came home with a card in

his book

> bag saying 'Dear , I love you!' annonymous but he claimed it

was from O

> and told us 'She doesn't run away from me anymore.' We all agreed

that was

> a breakthrough.

>

>

>

> Anyway, on thursday last week he came home with another love note,

this time

> signed. My dd and I launched into questioning mode and it turns

out that he

> has kissed her on the forehead and cheek and hugged her and she

has 'kissed

> me a hundred times all over my face'. What is he like!!

Apparently 'She

> liked it!' and 'We are going to get married'. Had to tell his

LSA that I

> was shocked that this was going on in school!!

>

>

>

> OMG, my 10 year old NT dd has never even looked at boys and here

is ,

> who I cried bucket loads of tears over cos he would never have

friends,

> making rather too rapid gains with the opposite sex! At his

annual review

> last week, the SENCO reported he and his best friend Ben had been

discussing

> which of their cousins had kissed and sniggering in that lovely

boy way.

>

>

>

> Couldn't imagine we would ever be here - reading is the next major

target

> for us, seems to have dyslexia. We are doing Fast Forward to

reading

> in the holidays (a computer based programme from the US)

>

>

>

> I'll keep you informed if it works miracles!

>

>

>

> Tina

>

>

>

>

>

>

> --

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.1.394 / Virus Database: 268.8.3/360 - Release Date:

09/06/2006

>

>

>

> --

> No virus found in this outgoing message.

> Checked by AVG Free Edition.

> Version: 7.1.394 / Virus Database: 268.8.3/360 - Release Date:

09/06/2006

>

[Guest guest]

This is HUGE - well done him!!

Anne-Marie

-- In Autism Treatment , " Sass and Rem "

<Moroza-@...> wrote:

>

> That's a lovely story! Thank you for sharing it. Sara x

>

>

>

> Update on

>

>

>

> Hi All

>

>

>

> Just a quick update on my (one of many I see!). is 7

years old

> and was diagnosed with autism at age 3. We started on the

GFCF/Sugar free

> diet before his diagnosis due to severe ezcema. For the first 2

years, we

> focussed heavily on ABA which worked well for and enabled him

to

> integrate full time into mainstream.

>

>

>

> After that we have been majoring on biomed and are under Dr Usman

in the US.

> We have been chelating and using MB12 for 18 months.

>

>

>

> Recently we have started MB12 shots on a daily basis and have also

> introduced oral EDTA in addition to td-DMPS (Buttar Protocol).

is

> still dumping metals, mainly in the fecal sample. Nickel and

cadmium levels

> have now dropped, as has mercury. More lead, antimony and uranium

(where

> the F*** does that come from!) are coming out. Beryllium, Lead,

nickel and

> tungsten are in the yellow, all the rest in the green.

>

>

>

> We have also been doing brushing therapy for the last 10 months to

work on

> primative retained reflexes.

>

>

>

> The big news is that is now in love!! He has been admiring a

rather

> cute brunette in his class for a while, but I don't think she knew

of his

> affection til he did a lightening raid in the classroom - ran up,

quick kiss

> and retreated! Just before half term he came home with a card in

his book

> bag saying 'Dear , I love you!' annonymous but he claimed it

was from O

> and told us 'She doesn't run away from me anymore.' We all agreed

that was

> a breakthrough.

>

>

>

> Anyway, on thursday last week he came home with another love note,

this time

> signed. My dd and I launched into questioning mode and it turns

out that he

> has kissed her on the forehead and cheek and hugged her and she

has 'kissed

> me a hundred times all over my face'. What is he like!!

Apparently 'She

> liked it!' and 'We are going to get married'. Had to tell his

LSA that I

> was shocked that this was going on in school!!

>

>

>

> OMG, my 10 year old NT dd has never even looked at boys and here

is ,

> who I cried bucket loads of tears over cos he would never have

friends,

> making rather too rapid gains with the opposite sex! At his

annual review

> last week, the SENCO reported he and his best friend Ben had been

discussing

> which of their cousins had kissed and sniggering in that lovely

boy way.

>

>

>

> Couldn't imagine we would ever be here - reading is the next major

target

> for us, seems to have dyslexia. We are doing Fast Forward to

reading

> in the holidays (a computer based programme from the US)

>

>

>

> I'll keep you informed if it works miracles!

>

>

>

> Tina

>

>

>

>

>

>

> --

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.1.394 / Virus Database: 268.8.3/360 - Release Date:

09/06/2006

>

>

>

> --

> No virus found in this outgoing message.

> Checked by AVG Free Edition.

> Version: 7.1.394 / Virus Database: 268.8.3/360 - Release Date:

09/06/2006

>

[Guest guest]

What a sweetie!

Jane

Update on

Hi All

Just a quick update on my (one of many I see!). is 7 years old and was diagnosed with autism at age 3. We started on the GFCF/Sugar free diet before his diagnosis due to severe ezcema. For the first 2 years, we focussed heavily on ABA which worked well for and enabled him to integrate full time into mainstream.

After that we have been majoring on biomed and are under Dr Usman in the US. We have been chelating and using MB12 for 18 months.

Recently we have started MB12 shots on a daily basis and have also introduced oral EDTA in addition to td-DMPS (Buttar Protocol). is still dumping metals, mainly in the fecal sample. Nickel and cadmium levels have now dropped, as has mercury. More lead, antimony and uranium (where the F*** does that come from!) are coming out. Beryllium, Lead, nickel and tungsten are in the yellow, all the rest in the green.

We have also been doing brushing therapy for the last 10 months to work on primative retained reflexes.

The big news is that is now in love!! He has been admiring a rather cute brunette in his class for a while, but I don't think she knew of his affection til he did a lightening raid in the classroom - ran up, quick kiss and retreated! Just before half term he came home with a card in his book bag saying 'Dear , I love you!' annonymous but he claimed it was from O and told us 'She doesn't run away from me anymore.' We all agreed that was a breakthrough.

Anyway, on thursday last week he came home with another love note, this time signed. My dd and I launched into questioning mode and it turns out that he has kissed her on the forehead and cheek and hugged her and she has 'kissed me a hundred times all over my face'. What is he like!! Apparently 'She liked it!' and 'We are going to get married'. Had to tell his LSA that I was shocked that this was going on in school!!

OMG, my 10 year old NT dd has never even looked at boys and here is , who I cried bucket loads of tears over cos he would never have friends, making rather too rapid gains with the opposite sex! At his annual review last week, the SENCO reported he and his best friend Ben had been discussing which of their cousins had kissed and sniggering in that lovely boy way.

Couldn't imagine we would ever be here - reading is the next major target for us, seems to have dyslexia. We are doing Fast Forward to reading in the holidays (a computer based programme from the US)

I'll keep you informed if it works miracles!

Tina

[Guest guest]

In a message dated 12/06/2006 23:07:21 GMT Daylight Time, simon_tinawood@... writes:

The big news is that is now in love!! He has been admiring a rather cute brunette in his class for a while, but I don't think she knew of his affection til he did a lightening raid in the classroom - ran up, quick kiss and retreated! Just before half term he came home with a card in his book bag saying 'Dear , I love you!' annonymous but he claimed it was from O and told us 'She doesn't run away from me anymore.' We all agreed that was a breakthrough.

>>>OMG, how awesoem and scarey LOL

Tom, 11.5 has just announced he is 'going out' with Beth, a girl from his tutor group

Mandi x

[Guest guest]

:

I certainly wish I would have known about this camp sooner!! Hannah was

really diasappointed we can't go to Atlanta. We live about 1 hour away from

Lake Geneva. Are you from Wisconsin? If so, where do you live. We live in

Waukesha County in Menomonee Falls.

tim chesney <tec1959@...> wrote:

First of all thanks to all who gave me the words to

confront the doctor about Jen and her shots. As you

might not remember Jen was have trouble with the shot

methroxate and the side effects. Her eye is flared

again. I had to wait 1 week to see the dr. Could not

get me in sooner. Well turns out Jens arthritis is in

remission and her eye is flared. The dr decide to

switch her to pills. ten a week. We were told to crush

them and that this would help with side effects. The

dr told Jen she has to comply ths time otherwise she

will be put on a med that they do by a line.

I think Jen will listen this time. Thanks again for

your support.

We also are wondering if anyone is going to camp Jam

in Lake Geneva Wis july 21-23

Thanks

and age 12 poly with uvestis

__________________________________________________

[Guest guest]

Hi ,

We live fifteen minutes from Lake Geneva but I know nothing about

this camp. Sometimes it seems that communication about things is

not so good.

( 8 Poly)

> First of all thanks to all who gave me the words to

> confront the doctor about Jen and her shots. As you

> might not remember Jen was have trouble with the shot

> methroxate and the side effects. Her eye is flared

> again. I had to wait 1 week to see the dr. Could not

> get me in sooner. Well turns out Jens arthritis is in

> remission and her eye is flared. The dr decide to

> switch her to pills. ten a week. We were told to crush

> them and that this would help with side effects. The

> dr told Jen she has to comply ths time otherwise she

> will be put on a med that they do by a line.

>

> I think Jen will listen this time. Thanks again for

> your support.

>

> We also are wondering if anyone is going to camp Jam

> in Lake Geneva Wis july 21-23

>

> Thanks

> and age 12 poly with uvestis

>

> __________________________________________________

>

[Guest guest]

Hey all

We live in Lake in the Hills Illinois which is 44

miles from the Wis Border. My mother in law lives in

Delavan. We have been goin to camp since 2001.

seems to make new friends each year. She enjoys it

beacuse they have crafts and campfires. They even have

a talent show. The children who attend our not spoiled

or do not feel sorry for themselves. Their is no name

calling like sometimes experience at school. I

would like to have gone to the conference beacuse I

heard its a learning experience. Camp is more a social

and fun thing to do. The conferecne is fun I hear. YOu

seem to learn more about your child's condition. I

think if you call 312-372-2080 and talk to someone you

might still be able to attend camp, and there is one

in Wis dells call camp mash.

and

--- heckmom2 <heckmom2@...> wrote:

> Hi ,

> We live fifteen minutes from Lake Geneva but I know

> nothing about

> this camp. Sometimes it seems that communication

> about things is

> not so good.

> ( 8 Poly)

>

> > First of all thanks to all who gave me

> the words to

> > confront the doctor about Jen and her shots. As

> you

> > might not remember Jen was have trouble with the

> shot

> > methroxate and the side effects. Her eye is flared

> > again. I had to wait 1 week to see the dr. Could

> not

> > get me in sooner. Well turns out Jens arthritis is

> in

> > remission and her eye is flared. The dr decide to

> > switch her to pills. ten a week. We were told to

> crush

> > them and that this would help with side effects.

> The

> > dr told Jen she has to comply ths time otherwise

> she

> > will be put on a med that they do by a line.

> >

> > I think Jen will listen this time. Thanks again

> for

> > your support.

> >

> > We also are wondering if anyone is going to camp

> Jam

> > in Lake Geneva Wis july 21-23

> >

> > Thanks

> > and age 12 poly with uvestis

> >

> > __________________________________________________

> >

[Guest guest]

What a wonderful essay. I agree you have a very special son.

Congratulations for instilling such great values in him.

Connie

stephandkip <stephandkip@...> wrote:

has had his CI for three years now. I have been very busy

teaching high school for the last two years, but I have tried to

check in and read posts when I could. This list really helped us

through the CI process. is now 11 and is in the 5th

grade. I have always known that he is our most spiritual child and

the essay he wrote at school this week just reinforces that. I truly

believe that Ben is the wonderful boy that he is because of his

hearing loss. Ben may not be able to hear as well as many people,

but I believe he listens better than most. Maybe not hearing the

world very well allows him to hear the Holy Ghost better. May he

never change!

Here is the paper he wrote this week:

I'm in fifth grade and I want to set some goals. My goals are things

I say I will accomplish instead of hope or try to accomplish. If I

say " try " then that means I will try and might succeed. If I

say " hope " , I probably won't accomplish anything. If I say " will "

that means I will do what I have said. One goal I set is to think

nicely about other people and have pure thoughts. Another goal I

will complete is keeping my room clean. The most important goal for

me is to get my homework done fast and still do a good job.

My academic goal is to get my homework done quickly. The

reason I want to do homework fast is to have enough time to check it

over twice and still have time to play or practice basketball. This

way I will be able to watch Duke play basketball as well.

My behavior goal is to think nicely about people and have

pure thoughts. I want to keep my thoughts pure because when I think

rudely I hurt myself. When I start to think badly I can sing a song

in my head to forget about bad stuff. This goal will help me be a

nicer and happier person.

My personal goal is to keep my room clean. My room is

already clean so all I need to do is keep it nice and clean. I want

it clean so I can walk through my room. I will keep my room clean

by keeping my four year old sister out of the toy box. I will clean

up after myself.

These are three goals I will succeed at instead of hope or

try to do. My 5th grade goals will be accomplished soon enough. I

am a Duke Blue Devil and a Grady Brown Cougar that plans to

succeed. I think I will have a pretty good year now that I have

goals.

" The Miracle at Ohio State "

aka Nucleus Freedom

Implanted 10/04/2005

Activated 11/1/2005

Surgery: Ohio State University

Surgeon: Dr. Bradley Welling

http://internalmedicine.osu.edu/article.cfm?ID=2021

[Guest guest]

Gosh that was a special message. I sincerely enjoyed reading

's essay. Please tell him how much I liked it and tell him to

keep up the good work! His desire to set goals is amazing at his

young age. We all need to do this no matter how old we are. You sure

have reason to be proud of him. I bet his parents are pretty special

as well.

Alice

http://www..com