Newly diagnosed

[Guest guest]

Hi Karin. Where are you located? I am sure there is someone on this list

that is close to you. Our daughter Caroline was diagnosed at 23 months

with Pauci. It started out in her knee and quickly spead. She is poly

now and also has Iritis. Have you had her eyes checked out? If, not I

would recommend that you go to a pediatric opthamologist and have her

eyes checked. If you can find one that specializes in Iritis or Uveitis

that would be ideal! Iritis is a silent disease - there often are no

symtoms.

Naprosyn is a slow working drug. It takes about 6-8 weeks to work. It's

a long wait, especially if you have already been struggling for awhile.

If naprosyn doesn't work they might look at Methotrexate. This a a very

good medicine that works wonders for these kids...

Please let me know if you have any questions!

Alia and Caroline, age 4, poly and iritis

________________________________

From: [mailto: ] On

Behalf Of Karin Hotchkiss

Sent: Tuesday, February 14, 2006 12:14 PM

Subject: newly diagnosed

My 2 year old daughter has just been diagnosed with

JRA: most likely pauci. Since we are new to this and

don't know any local families going thru this I am

excited to find this chat room. Any tips for

treatment would be great. We are currently on

Naprosyn, but I don't see much change. Joint

injections are scheduled.

Thanks,

Karin

__________________________________________________

[Guest guest]

Hello and welcome to the group! Sorry you have to be welcome but as others

have said, you have a great resource now!

It does take awhile for antiinflammatories like naprosyn to kick in but the

injections work pretty fast most times in regaining motion, pain control,

etc. Which joints are getting injected? Did the rheumy explain what they do,

what it helps with and just general preperation? I know injections are rough

to deal with especialy for the little ones.

I have had polyJRA since age 5 but was blessed for a long time before I

needed stronger meds and injections. I did have to go through a lot that was

painful, but fortunately, my mom was there to hold me and cuddle me.... and

even though I didnt make the connection.... the injections, other treatments

I didnt like.. helped!

Anyways, welcome again

Issadora (polyJRA, FMS/MPS)

On 2/16/06, Alia.Pranke@... <Alia.Pranke@...> wrote:

>

> Hi Karin. Where are you located? I am sure there is someone on this list

> that is close to you. Our daughter Caroline was diagnosed at 23 months

> with Pauci. It started out in her knee and quickly spead. She is poly

> now and also has Iritis. Have you had her eyes checked out? If, not I

> would recommend that you go to a pediatric opthamologist and have her

> eyes checked. If you can find one that specializes in Iritis or Uveitis

> that would be ideal! Iritis is a silent disease - there often are no

> symtoms.

>

> Naprosyn is a slow working drug. It takes about 6-8 weeks to work. It's

> a long wait, especially if you have already been struggling for awhile.

> If naprosyn doesn't work they might look at Methotrexate. This a a very

> good medicine that works wonders for these kids...

>

> Please let me know if you have any questions!

>

> Alia and Caroline, age 4, poly and iritis

>

> ________________________________

>

> From: [mailto: ] On

> Behalf Of Karin Hotchkiss

> Sent: Tuesday, February 14, 2006 12:14 PM

>

> Subject: newly diagnosed

>

>

>

> My 2 year old daughter has just been diagnosed with

> JRA: most likely pauci. Since we are new to this and

> don't know any local families going thru this I am

> excited to find this chat room. Any tips for

> treatment would be great. We are currently on

> Naprosyn, but I don't see much change. Joint

> injections are scheduled.

> Thanks,

> Karin

>

> __________________________________________________

>

[Guest guest]

That is a great pointer regarding the joint injections. The peds

rheumatology team made splints to keep the joint immobile for a couple days.

I think that is one of the greater challenges with the younger you are. No

pain = time to run.. hehe. Which of course, is great.. under other

circumstances. That's def. something to ask the doctor about.

In terms of medication, the injections coupled with the Naprosyn should help

get the symptoms under control. Remaining active, especialy once the

injections start working is great and will likely happen automaticaly.

The hardest thing I think is patience.... giving it a littile time to let

things kick in and start working. Someone else had suggested getting the

eyes examined and that is imperative especialy with PauciJRA where there is

a higher risl if iritis/uveitis, etc which are ussualy silent. I rememeber

my peds opthomologist telling me that he has diagnosed severeal cases of JRA

before any other doctor by incident

Acess to a pool and/or hot tub can work wonders for increasing range,

decreasing pain and a chance to just have a bit of fun in a weight free

environment.

Good fortune

On 2/16/06, Colleen <bookissmom@...> wrote:

>

> Hi Karin-

>

> I am so sorry that your daughter is going through this... but I am glad

> you have found us! My daughter was diagnosed at 3 years - she is almost 8

> now. What type of JRA does your daughter have? Also, where do you live?

> You might be surprised to find somebody on the board who is nearby. Even

> without a physical proximity, you can always come here with questions and to

> get support. It has been a real lifeline for me.

>

> A lot of kids have had some immediate success with the joint

> injections. The tough part for you will be trying to keep your daughter

> from running around too much afterward. They generally want you to keep the

> joint immobile for a bit. With my daughter, they actually casted her leg to

> keep the knee still for two days.

>

> If she is only on naprosyn now, I would not be surprised if your doctor

> started to discuss the possibility of methotrexate with you. That can be

> very scary, but it is an extremely common next step. If that happens, there

> are plenty of parents here with experience and advice.

>

> As for therapy, if you have access to pool therapy through your hospital

> or a PT clinic, it often does wonders, especially for legs. Warm baths in

> the morning also help to get thinsg going and decrease discomfort... and

> many people also use heating pads or electric blankets.

>

> I have rambled---- but please let us know if you have any specific

> questions! Best hopes to you for good results from the injections......

>

> Take care-

> Colleen (mom to Caitlin, 7, systemic)

>

> swishkiss <swishkiss@...> wrote:

> My 2 year old daughter has just been diagnosed with JRA. It has been

> a rough 3 months as it is affecting her knees and she is not walking

> much and is in significant pain. We are going for joint injections

> this week. Any ideas for therapy or medications? Also, we do not

> know any other families in this situation so any advice would be very

> helpful.

> Thanks,

> Karin

>

>

>

>

>

>

>

>

[Guest guest]

Thank you for the kind words. We went for injections

this morning for 3 joints: both knees and left ankle.

Though no exact diagnosis has been given yet, it is

most Joy has pauci JRA.

Amazing coincidence, the other family in our preop

room had the same story for their 2 year old daughter

newly diagnosed and there for injections also. Both

girls did fine. Now we are just passing time with

Dora and Barbie movies. By the way, we live in Tampa,

FL.

Karin

Joy 2 pauciJRA

--- Issadora <FlyfreeIzzie@...> wrote:

> That is a great pointer regarding the joint

> injections. The peds

> rheumatology team made splints to keep the joint

> immobile for a couple days.

> I think that is one of the greater challenges with

> the younger you are. No

> pain = time to run.. hehe. Which of course, is

> great.. under other

> circumstances. That's def. something to ask the

> doctor about.

>

> In terms of medication, the injections coupled with

> the Naprosyn should help

> get the symptoms under control. Remaining active,

> especialy once the

> injections start working is great and will likely

> happen automaticaly.

>

> The hardest thing I think is patience.... giving it

> a littile time to let

> things kick in and start working. Someone else had

> suggested getting the

> eyes examined and that is imperative especialy with

> PauciJRA where there is

> a higher risl if iritis/uveitis, etc which are

> ussualy silent. I rememeber

> my peds opthomologist telling me that he has

> diagnosed severeal cases of JRA

> before any other doctor by incident

>

> Acess to a pool and/or hot tub can work wonders for

> increasing range,

> decreasing pain and a chance to just have a bit of

> fun in a weight free

> environment.

>

> Good fortune

>

>

> On 2/16/06, Colleen <bookissmom@...>

> wrote:

> >

> > Hi Karin-

> >

> > I am so sorry that your daughter is going

> through this... but I am glad

> > you have found us! My daughter was diagnosed at 3

> years - she is almost 8

> > now. What type of JRA does your daughter have?

> Also, where do you live?

> > You might be surprised to find somebody on the

> board who is nearby. Even

> > without a physical proximity, you can always come

> here with questions and to

> > get support. It has been a real lifeline for me.

> >

> > A lot of kids have had some immediate success

> with the joint

> > injections. The tough part for you will be trying

> to keep your daughter

> > from running around too much afterward. They

> generally want you to keep the

> > joint immobile for a bit. With my daughter, they

> actually casted her leg to

> > keep the knee still for two days.

> >

> > If she is only on naprosyn now, I would not be

> surprised if your doctor

> > started to discuss the possibility of methotrexate

> with you. That can be

> > very scary, but it is an extremely common next

> step. If that happens, there

> > are plenty of parents here with experience and

> advice.

> >

> > As for therapy, if you have access to pool

> therapy through your hospital

> > or a PT clinic, it often does wonders, especially

> for legs. Warm baths in

> > the morning also help to get thinsg going and

> decrease discomfort... and

> > many people also use heating pads or electric

> blankets.

> >

> > I have rambled---- but please let us know if you

> have any specific

> > questions! Best hopes to you for good results

> from the injections......

> >

> > Take care-

> > Colleen (mom to Caitlin, 7, systemic)

> >

> > swishkiss <swishkiss@...> wrote:

> > My 2 year old daughter has just been diagnosed

> with JRA. It has been

> > a rough 3 months as it is affecting her knees and

> she is not walking

> > much and is in significant pain. We are going for

> joint injections

> > this week. Any ideas for therapy or medications?

> Also, we do not

> > know any other families in this situation so any

> advice would be very

> > helpful.

> > Thanks,

> > Karin

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi ,

Our daughter was diagnosed back in August with JRA

(Pauci so far) also at age 2. She had swelling and

pain in her right knee. Our Ped Orthopaedic said that

we probably were looking at JRA, but suggested we see

a Ped Rhumy to be sure. The Rhumy confirmed the DX

and we started with Oral Steroids and sent to an

Opthamologist (Opthamology was good on the first

visit), but on our second visit he wasn't pleased with

enough remission of the swelling and he wanted to put

us on MTX.

To make a long story short, we had an issue with this

with many of our local pharmacies, so we went to

another Ped Rhumy for a 2nd opinion. Glad we went, we

really liked Dr. Vogler. He suggested that we try a

joint injection since Delaney had still only shown

signs of inflammation in the right knee. We had the

steriod injected just a little less than a month ago

via an arthroscopy (BTW, is this usually the way this

is done?) by our Ped Orthopaedic.

Went back to her last Tuesday and she was extremely

pleased as Delaney's knee had returned to normal size

for the first time since before August. However, the

real test comes next month when we go back to our Ped

Rhumy. In the meantime, we go to learn PT for her

this week or next, whenever we can get the appt.

Hope that Joy is doing well with her injections.

Brad and

Delaney (Pauci 2 1/2)

--- Karin Hotchkiss <swishkiss@...> wrote:

> Thank you for the kind words. We went for

> injections

> this morning for 3 joints: both knees and left

> ankle.

> Though no exact diagnosis has been given yet, it is

> most Joy has pauci JRA.

>

> Amazing coincidence, the other family in our preop

> room had the same story for their 2 year old

> daughter

> newly diagnosed and there for injections also. Both

> girls did fine. Now we are just passing time with

> Dora and Barbie movies. By the way, we live in

> Tampa,

> FL.

>

> Karin

> Joy 2 pauciJRA

>

> --- Issadora <FlyfreeIzzie@...> wrote:

>

> > That is a great pointer regarding the joint

> > injections. The peds

> > rheumatology team made splints to keep the joint

> > immobile for a couple days.

> > I think that is one of the greater challenges with

> > the younger you are. No

> > pain = time to run.. hehe. Which of course, is

> > great.. under other

> > circumstances. That's def. something to ask the

> > doctor about.

> >

> > In terms of medication, the injections coupled

> with

> > the Naprosyn should help

> > get the symptoms under control. Remaining active,

> > especialy once the

> > injections start working is great and will likely

> > happen automaticaly.

> >

> > The hardest thing I think is patience.... giving

> it

> > a littile time to let

> > things kick in and start working. Someone else had

> > suggested getting the

> > eyes examined and that is imperative especialy

> with

> > PauciJRA where there is

> > a higher risl if iritis/uveitis, etc which are

> > ussualy silent. I rememeber

> > my peds opthomologist telling me that he has

> > diagnosed severeal cases of JRA

> > before any other doctor by incident

> >

> > Acess to a pool and/or hot tub can work wonders

> for

> > increasing range,

> > decreasing pain and a chance to just have a bit of

> > fun in a weight free

> > environment.

> >

> > Good fortune

> >

> >

> > On 2/16/06, Colleen <bookissmom@...>

> > wrote:

> > >

> > > Hi Karin-

> > >

> > > I am so sorry that your daughter is going

> > through this... but I am glad

> > > you have found us! My daughter was diagnosed at

> 3

> > years - she is almost 8

> > > now. What type of JRA does your daughter have?

> > Also, where do you live?

> > > You might be surprised to find somebody on the

> > board who is nearby. Even

> > > without a physical proximity, you can always

> come

> > here with questions and to

> > > get support. It has been a real lifeline for

> me.

> > >

> > > A lot of kids have had some immediate success

> > with the joint

> > > injections. The tough part for you will be

> trying

> > to keep your daughter

> > > from running around too much afterward. They

> > generally want you to keep the

> > > joint immobile for a bit. With my daughter,

> they

> > actually casted her leg to

> > > keep the knee still for two days.

> > >

> > > If she is only on naprosyn now, I would not be

> > surprised if your doctor

> > > started to discuss the possibility of

> methotrexate

> > with you. That can be

> > > very scary, but it is an extremely common next

> > step. If that happens, there

> > > are plenty of parents here with experience and

> > advice.

> > >

> > > As for therapy, if you have access to pool

> > therapy through your hospital

> > > or a PT clinic, it often does wonders,

> especially

> > for legs. Warm baths in

> > > the morning also help to get thinsg going and

> > decrease discomfort... and

> > > many people also use heating pads or electric

> > blankets.

> > >

> > > I have rambled---- but please let us know if

> you

> > have any specific

> > > questions! Best hopes to you for good results

> > from the injections......

> > >

> > > Take care-

> > > Colleen (mom to Caitlin, 7, systemic)

> > >

> > > swishkiss <swishkiss@...> wrote:

> > > My 2 year old daughter has just been diagnosed

> > with JRA. It has been

> > > a rough 3 months as it is affecting her knees

> and

> > she is not walking

> > > much and is in significant pain. We are going

> for

> > joint injections

> > > this week. Any ideas for therapy or

> medications?

> > Also, we do not

> > > know any other families in this situation so any

> > advice would be very

> > > helpful.

> > > Thanks,

> > > Karin

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Injections were amazing. For the first time in 4

months we have our little girl back. The pedi ortho

who did it apparently does quite a few of these: mask

anesthesia, very quick, straight injection. Joy has

been jumping around so much I am now wondering when

she is going to crack her head and need stitches. It

feels so wonderful to be healthy again!!!

Karin and Joy in Tampa

--- jennifer casselman <bamabelle1997@...>

wrote:

> Hi ,

>

> Our daughter was diagnosed back in August with JRA

> (Pauci so far) also at age 2. She had swelling and

> pain in her right knee. Our Ped Orthopaedic said

> that

> we probably were looking at JRA, but suggested we

> see

> a Ped Rhumy to be sure. The Rhumy confirmed the DX

> and we started with Oral Steroids and sent to an

> Opthamologist (Opthamology was good on the first

> visit), but on our second visit he wasn't pleased

> with

> enough remission of the swelling and he wanted to

> put

> us on MTX.

>

> To make a long story short, we had an issue with

> this

> with many of our local pharmacies, so we went to

> another Ped Rhumy for a 2nd opinion. Glad we went,

> we

> really liked Dr. Vogler. He suggested that we try a

> joint injection since Delaney had still only shown

> signs of inflammation in the right knee. We had the

> steriod injected just a little less than a month ago

> via an arthroscopy (BTW, is this usually the way

> this

> is done?) by our Ped Orthopaedic.

>

> Went back to her last Tuesday and she was extremely

> pleased as Delaney's knee had returned to normal

> size

> for the first time since before August. However,

> the

> real test comes next month when we go back to our

> Ped

> Rhumy. In the meantime, we go to learn PT for her

> this week or next, whenever we can get the appt.

>

> Hope that Joy is doing well with her injections.

>

> Brad and

> Delaney (Pauci 2 1/2)

>

> --- Karin Hotchkiss <swishkiss@...> wrote:

>

> > Thank you for the kind words. We went for

> > injections

> > this morning for 3 joints: both knees and left

> > ankle.

> > Though no exact diagnosis has been given yet, it

> is

> > most Joy has pauci JRA.

> >

> > Amazing coincidence, the other family in our preop

> > room had the same story for their 2 year old

> > daughter

> > newly diagnosed and there for injections also.

> Both

> > girls did fine. Now we are just passing time with

> > Dora and Barbie movies. By the way, we live in

> > Tampa,

> > FL.

> >

> > Karin

> > Joy 2 pauciJRA

> >

> > --- Issadora <FlyfreeIzzie@...> wrote:

> >

> > > That is a great pointer regarding the joint

> > > injections. The peds

> > > rheumatology team made splints to keep the joint

> > > immobile for a couple days.

> > > I think that is one of the greater challenges

> with

> > > the younger you are. No

> > > pain = time to run.. hehe. Which of course, is

> > > great.. under other

> > > circumstances. That's def. something to ask the

> > > doctor about.

> > >

> > > In terms of medication, the injections coupled

> > with

> > > the Naprosyn should help

> > > get the symptoms under control. Remaining

> active,

> > > especialy once the

> > > injections start working is great and will

> likely

> > > happen automaticaly.

> > >

> > > The hardest thing I think is patience.... giving

> > it

> > > a littile time to let

> > > things kick in and start working. Someone else

> had

> > > suggested getting the

> > > eyes examined and that is imperative especialy

> > with

> > > PauciJRA where there is

> > > a higher risl if iritis/uveitis, etc which are

> > > ussualy silent. I rememeber

> > > my peds opthomologist telling me that he has

> > > diagnosed severeal cases of JRA

> > > before any other doctor by incident

> > >

> > > Acess to a pool and/or hot tub can work wonders

> > for

> > > increasing range,

> > > decreasing pain and a chance to just have a bit

> of

> > > fun in a weight free

> > > environment.

> > >

> > > Good fortune

> > >

> > >

> > > On 2/16/06, Colleen <bookissmom@...>

> > > wrote:

> > > >

> > > > Hi Karin-

> > > >

> > > > I am so sorry that your daughter is going

> > > through this... but I am glad

> > > > you have found us! My daughter was diagnosed

> at

> > 3

> > > years - she is almost 8

> > > > now. What type of JRA does your daughter

> have?

> > > Also, where do you live?

> > > > You might be surprised to find somebody on the

> > > board who is nearby. Even

> > > > without a physical proximity, you can always

> > come

> > > here with questions and to

> > > > get support. It has been a real lifeline for

> > me.

> > > >

> > > > A lot of kids have had some immediate

> success

> > > with the joint

> > > > injections. The tough part for you will be

> > trying

> > > to keep your daughter

> > > > from running around too much afterward. They

> > > generally want you to keep the

> > > > joint immobile for a bit. With my daughter,

> > they

> > > actually casted her leg to

> > > > keep the knee still for two days.

> > > >

> > > > If she is only on naprosyn now, I would not

> be

> > > surprised if your doctor

> > > > started to discuss the possibility of

> > methotrexate

> > > with you. That can be

> > > > very scary, but it is an extremely common next

> > > step. If that happens, there

> > > > are plenty of parents here with experience and

> > > advice.

> > > >

> > > > As for therapy, if you have access to pool

> > > therapy through your hospital

> > > > or a PT clinic, it often does wonders,

> > especially

> > > for legs. Warm baths in

> > > > the morning also help to get thinsg going and

> > > decrease discomfort... and

> > > > many people also use heating pads or electric

> > > blankets.

> > > >

> > > > I have rambled---- but please let us know if

> > you

> > > have any specific

> > > > questions! Best hopes to you for good results

> > > from the injections......

> > > >

> > > > Take care-

> > > > Colleen (mom to Caitlin, 7, systemic)

> > > >

> > > > swishkiss <swishkiss@...> wrote:

> > > > My 2 year old daughter has just been

> diagnosed

> > > with JRA. It has been

> > > > a rough 3 months as it is affecting her knees

> > and

> > > she is not walking

> > > > much and is in significant pain. We are going

> > for

> > > joint injections

> > > > this week. Any ideas for therapy or

> > medications?

> > > Also, we do not

> > > > know any other families in this situation so

> any

> > > advice would be very

> > > > helpful.

> > > > Thanks,

>

=== message truncated ===

__________________________________________________

[Guest guest]

First off, where are you located? We might be able to better point you

in a good direction if we can track down some local services for you.

Second, sadly your sons years in and out various residential facilities

most likely contributed to his current behaviors. If he was incorrectly

placed with emotionally disturbed children, these kids most likely

taught him many, many unsavory behaviors he may not have otherwise

picked up. It will take time for him to unlearn these behaviors. Is he

in counseling? On medications? Sexually acting out is not really a

common symptom of Aspergers but can be indicative of other disorders.

Has he had a recent psychological evaluation? I think that (if it

hasn't been done) should be your first step. Do you have any friends or

family who could occasionally babysit or help out with the kids? Are

there any drop-in child care centers in your area? A local YMCA with an

after school program? My point here is that when you get overwhelmed it

would be so very good for you if you could just have at least a couple

hours to yourself. As for your son, what does he like to do? What

activities could you involve him in at home or otherwise? Hell, just

paying 50$ a month for cable can help keep him busy . Have you talked

to him about his inappropriate behavior with his brother? I'm sure you

have, I just felt the need to ask. In a case like that, I would

personally go the politically incorrect route and resort to allot of

lectures, a bit of yelling and a carefully crafted guilt trip. Make

sure he feels loved and wanted in your home (even if you don't always

genuinely feel that way). Make sure he doesn't feel like his brother is

favored, wanted more or treated better either. We all know how deeply

sibling rivalry can affect a child.

Just so you know, my son had a period of sexual inappropriateness but

with planned ignoring of most events and a few well placed lectures, he

hasn't been openly curious or had any incidents in awhile. Of course,

he was much younger than your son at the time. At 12, a boy is well,

just starting to discover his sexual side. So, you have to walk a fine

line of not shaming the curiosity but the outward display towards

others. In this case, with the repeated episodes with his brother,

counseling could be very helpful, I think.

Otherwise, you are in a period of readjustment. When our lives

experience such change, it is perfectly normal for things to fall apart

a bit. Don't worry if the bills are a bit late or the house is a bit

messy or you feel overwhelmed. As long as you remain self-aware and are

actively working on the bigger picture, the rest will sort itself out.

You will regain your balance, you will deal better with the kids with

each passing day. It will never be perfect or ideal. You are a single

Mom with a significantly bigger challenge than most single Moms and that

will always be hard. But, this period of transition will pass, new

routines will form, things will settle down, at least, until he hits

teenager hood .

I know I wrote allot but I really felt drawn to write you as I can

connect with your situation on allot of levels. Take advantage of the

wonderful support you can receive here. There are some really

insightful, caring parents here who have heard it all and been there,

done that on so very much. Ok, well, I have to go mow the lawn now.

Hope you have a great day!

Best wishes,

Tabitha

( ) Newly Diagnosed

I have a 12 yr old son who has had severe emotional/behavioral

problems his entire life. He's been pegged w/ADHD, PTSD, severe

depression(who wouldn't be?), among others. From 10 - 12 years of

age he lived in a group home that seemed only to make it worse. (I

understand now in light of the Aspergers diagnoses because they were

coming from a typical behavioral problem perspective.) They'd

reached their limits with him and relocated him to a therapuetic

foster home where he stayed for 6mo. until she could take it no

longer and he was sent home due to a lack of other available

placement. I am a single mom and also have a 7yr old son. Since my

oldest son's return, everyone's life has crumbled. I am in $3000

debt, when I was ahead, I cannot take my eyes off my son and so

cannot cook dinner, keep up on housework, help my youger son, get us

to bed on time. All forms of routine (which is so important here)

have been shot out the window. We fight, scream, cry - there is no

happiness in this family. I've been turned into social services 2x

since his return in mid-March because people misunderstand the

situation and assume due to his behaviors that he must be neglected

and/or abused. My younger son's teacher has called and writes daily

that he's sleeping in class, is sad, is 'acting up' and his grades

are dropping.

I am at a loss! We have a school mentor but I need help at home! I

found an aspergers specialist but he's across state lines and doesn't

know what resources are available in north carolina. We've dealt

over the years with the local mental health and am currently with a

different agency - none of which has been helpful, except for the

school mentor. No on is familiar with aspergers and no one can offer

any direction. Meanwhile, my son's behaviors and depression deepen.

Two nights ago he had his little brother suck his neck 'to show him

what would happen' and later got undressed 'because he was hot'. Our

situation has passed the red flag zone and still no help! No one

knows what to do. From experience, I can only expect the problems to

cont. to escalate. It's a vicious cycle I'm all too familiar with.

Sexual acting out is always resorted to when nothing else seems to

work for him. That is the one thing that always gets a reaction.

But the reactions are temp. band-aids, such as hospitalization and

relocation into just another inappropriate and unhelpful situation.

His true needs are not being understood or addressed, including by

me. I'm new to this, I've never heard of aspergers and I need some

serious education and training. I'm trying to read on it but after

working all day, getting home at 6p.m., fighting for hours trying to

take care of those evening chores (cook dinner, homework, bath,

etc.), I'm lucky if the kids are in bed by 10p.m. (bedtime is 8),

finally I open a book, read a sent. or 2 and pass out. Needless to

say, I haven't learned much.

I've rambeled enough. Please help direct me! My family is

crumbeling and falling apart. We are all so depression ridden, we

don't even care half the time, we are too exhausted and battered to

feel anymore.

Thanks for whatever help you may have to offer.

[Guest guest]

Hi!

Your situation seems so hard - I'm sorry! Sometimes it

feels like there's more anger at my house, too. Max is

very angry, rigid, and frustrated a lot. I know how it

feels to just be exhausted at the end of the day.

I have to say that my church and one in a nearby town

have been VERY helpful and supportive. I don't even go

to the one in the nearby town at all, so if you don't

attend a church, it shouldn't matter for getting help

from them. At my church, a lot of the older teenagers

help a lot (volunteered by their parents!). You could

also try a Jewish temple, but I don't know about these

personally. I just know that these churches have

helped tremendously, even if you don't go or aren't

" religious " . Hope it helps. Hang in there!

- Adrienne from Boston

--- dragonfishyear <dragon-fish@...> wrote:

> I have a 12 yr old son who has had severe

> emotional/behavioral

> problems his entire life. He's been pegged w/ADHD,

> PTSD, severe

> depression(who wouldn't be?), among others. From 10

> - 12 years of

> age he lived in a group home that seemed only to

> make it worse. (I

> understand now in light of the Aspergers diagnoses

> because they were

> coming from a typical behavioral problem

> perspective.) They'd

> reached their limits with him and relocated him to a

> therapuetic

> foster home where he stayed for 6mo. until she could

> take it no

> longer and he was sent home due to a lack of other

> available

> placement. I am a single mom and also have a 7yr

> old son. Since my

> oldest son's return, everyone's life has crumbled.

> I am in $3000

> debt, when I was ahead, I cannot take my eyes off my

> son and so

> cannot cook dinner, keep up on housework, help my

> youger son, get us

> to bed on time. All forms of routine (which is so

> important here)

> have been shot out the window. We fight, scream,

> cry - there is no

> happiness in this family. I've been turned into

> social services 2x

> since his return in mid-March because people

> misunderstand the

> situation and assume due to his behaviors that he

> must be neglected

> and/or abused. My younger son's teacher has called

> and writes daily

> that he's sleeping in class, is sad, is 'acting up'

> and his grades

> are dropping.

>

> I am at a loss! We have a school mentor but I need

> help at home! I

> found an aspergers specialist but he's across state

> lines and doesn't

> know what resources are available in north carolina.

> We've dealt

> over the years with the local mental health and am

> currently with a

> different agency - none of which has been helpful,

> except for the

> school mentor. No on is familiar with aspergers and

> no one can offer

> any direction. Meanwhile, my son's behaviors and

> depression deepen.

> Two nights ago he had his little brother suck his

> neck 'to show him

> what would happen' and later got undressed 'because

> he was hot'. Our

> situation has passed the red flag zone and still no

> help! No one

> knows what to do. From experience, I can only

> expect the problems to

> cont. to escalate. It's a vicious cycle I'm all too

> familiar with.

> Sexual acting out is always resorted to when nothing

> else seems to

> work for him. That is the one thing that always

> gets a reaction.

> But the reactions are temp. band-aids, such as

> hospitalization and

> relocation into just another inappropriate and

> unhelpful situation.

> His true needs are not being understood or

> addressed, including by

> me. I'm new to this, I've never heard of aspergers

> and I need some

> serious education and training. I'm trying to read

> on it but after

> working all day, getting home at 6p.m., fighting for

> hours trying to

> take care of those evening chores (cook dinner,

> homework, bath,

> etc.), I'm lucky if the kids are in bed by 10p.m.

> (bedtime is 8),

> finally I open a book, read a sent. or 2 and pass

> out. Needless to

> say, I haven't learned much.

>

> I've rambeled enough. Please help direct me! My

> family is

> crumbeling and falling apart. We are all so

> depression ridden, we

> don't even care half the time, we are too exhausted

> and battered to

> feel anymore.

>

> Thanks for whatever help you may have to offer.

>

>

>

>

>

>

__________________________________________________

[Guest guest]

you will have much better success with iodine http://www.optimox.com

gracia

>I was just diagnosed this week. I have had three

> serious bouts of Graves in the last 15 years, also

> associated problems involving thyroid eye disease,

> finally submitted to orbital radiation for

> swelling and double vision. Each time I went into

> remission. I have never submitted to RAI.

>

> Over the past six months I have suspected I was

> tipping naturally (no medication for the past

> year) into hypothyroid. An earlier lab indicated

> normal ranges. A recent lab indicated I had

> become hypothyroid.

>

> I started medicating today with 50 mcg

> L-thyroxine, will have blood drawn again in a

> month.

>

> Since I am concerned about being moved into

> hyperactivity again, I am grateful for the

> cautious dosing. I have not yet switched to an

> endocrinologist though two had treated me in the

> past for Graves. I am staying with my own family

> doctor unless symptoms drive me to seek additional

> help.

>

> Comments and suggestions about how to proceed are

> most welcome.

>

> Elaine

>

>

>

>

>

>

>

>

--

No virus found in this outgoing message.

Checked by AVG Free Edition.

Version: 7.1.392 / Virus Database: 268.5.6/339 - Release Date: 5/14/2006

[Guest guest]

Elaine,

You wrote:

>

> ... Comments and suggestions about how to proceed are

> most welcome.

You're doing it. Follow the rules for taking the meds and not mixing.

These should be plastered on your prescription bottle and are in the

fine print in the instructions that come with it. Watch for symptoms.

You already know what hyperT feels like. If you start to head that way,

cut back on the dosage (or the frequency).

Chuck

[Guest guest]

I don't know enough to give advice but I will pray for

you.

--- llegrand3 <llegrand3@...> wrote:

> My name is and my husband Rick has been newly

> diagnosed with Hep

> C and advanced cirrhosis. He quit drinking 2 months

> ago. Our primary

> physician told him he didn't think he'd survive the

> interferon

> therapy. The liver specialist told him the

> interferon is his only

> chance at survival. He also told me to take him off

> the Milk Thistle

> as it could be harming his liver. I have read so

> much research

> indicating that not only milk thistle but also

> colloidal silver are

> beneficial to Hep c patients. My husband is torn

> between trying

> alternative methods and attempting the interferon.

> Right now he is

> healthy, able to work and spend time with our 12

> year old daughter. I

> am very concerned about the depression associated

> with the interferon

> as our 22 year old daughter died last July so he

> (we) are already

> battling depression. Any thoughts, prayers, ideas

> would be so

> appreciated.

>

>

>

>

>

__________________________________________________

[Guest guest]

Daphney, if you let me know where you are located, I can try to give you

some specific information. Pam

[Guest guest]

Yes, give it all up quickly and make sure you clean out your house. You

can't eat what you don't have.

Good luck.

Keen

newly diagnosed

Hi I am 22 y/o and just got diagnosed with candidasis any advice before

I say goodbye to cakes and pies

[Guest guest]

The same thing happened to us. My son is 14. Problem is.....when our kids were little, not all the pdoc. knew how to recognize AS. We finally lucked into one who had training with Emory Hosp. and knew right away. It makes me sick to remember all the abuse Preston got from teachers, etc. b/c everyone thought he was just a problem child. I had taken to two differ. Dr. to help and no one saw the AS. Because of this, he now has a lot of other 'issues' that we are now dealing with. I don't have any advice for you b/c we are still trying to figure everything out....but I would get an IEP and have the school identify him as AS. They will not want to do this b/c under this identity he is eligible for services that they will try to not give you.

FYI, don't ever go to an IEP meeting or anything like it w/o someone. Preferably an advocate. Schools tell parents "no" in such an authoritative way it makes it hard to stand up to them. Your advocate can and will stand up for you.

Good luck.

mom to Preston with Ice, SD

( ) Newly Diagnosed

I am new to this group and I am looking for any and all information dealing with raising a child with Asperger's Syndrome. My son is 15 and is JUST NOW getting this diagnosis. After reading the different things that AS children exhibit, I am finding it increasingly difficult to understand why he has not been given this diagnosis sooner as he seems to be a text book case. It is my belief that the treatments administered to my son have not worked because they were focusing primarily on ADHD and depression.Please someone let me know what you think, how you deal with this disorder in your own home.... open to any and all suggestions.

[Guest guest]

HEY! we are apprently in the same boat!!my son is also 15 (will be 16

in july) and was diagnosed YESTERDAY! i have no clue how doctors have

not seen the " symptoms " sooner! they are too quick to say its adhd and

hand out pills..drives me bonkers. (i have msgr, if u would like

to chat sometime, or compare notes, my username is witchita_bear.

Take care!

>

> I am new to this group and I am looking for any and all information

> dealing with raising a child with Asperger's Syndrome. My son is 15

> and is JUST NOW getting this diagnosis. After reading the different

> things that AS children exhibit, I am finding it increasingly

> difficult to understand why he has not been given this diagnosis

> sooner as he seems to be a text book case.

> It is my belief that the treatments administered to my son have not

> worked because they were focusing primarily on ADHD and depression.

> Please someone let me know what you think, how you deal with this

> disorder in your own home.... open to any and all suggestions.

>

[Guest guest]

Hello, my son was also diagnosed yesterday with AS. He is 8, He was initially diagnosed ADHD. It has turned into something totally different. However, ritalin works for him. He is very hyper-active. It doesn't help with his social interactions or sensitivity to sensory stimulation.

I'm still in the "stunned" phase.

-- ( ) Re: Newly Diagnosed

HEY! we are apprently in the same boat!!my son is also 15 (will be 16 in july) and was diagnosed YESTERDAY! i have no clue how doctors have not seen the "symptoms" sooner! they are too quick to say its adhd and hand out pills..drives me bonkers. (i have msgr, if u would like to chat sometime, or compare notes, my username is witchita_bear.Take care!>> I am new to this group and I am looking for any and all information > dealing with raising a child with Asperger's Syndrome. My son is 15 > and is JUST NOW getting this diagnosis. After reading the different > things that AS children exhibit, I am finding it increasingly > difficult to understand why he has not been given this diagnosis > sooner as he seems to be a text book case. > It is my belief that the treatments administered to my son have not > worked because they were focusing primarily on ADHD and depression.> Please someone let me know what you think, how you deal with this > disorder in your own home.... open to any and all suggestions.>

[Guest guest]

My son is 15 and was diagnosed 3 months ago. Donna

( ) Re: Newly Diagnosed

HEY! we are apprently in the same boat!!my son is also 15 (will be 16

in july) and was diagnosed YESTERDAY! i have no clue how doctors have

not seen the " symptoms " sooner! they are too quick to say its adhd and

hand out pills..drives me bonkers. (i have msgr, if u would like

to chat sometime, or compare notes, my username is witchita_bear.

Take care!

>

> I am new to this group and I am looking for any and all information

> dealing with raising a child with Asperger's Syndrome. My son is 15

> and is JUST NOW getting this diagnosis. After reading the different

> things that AS children exhibit, I am finding it increasingly

> difficult to understand why he has not been given this diagnosis

> sooner as he seems to be a text book case.

> It is my belief that the treatments administered to my son have not

> worked because they were focusing primarily on ADHD and depression.

> Please someone let me know what you think, how you deal with this

> disorder in your own home.... open to any and all suggestions.

>

[Guest guest]

Tony Attwood has some absolutely wonderful books and DVD's on Aspergers. He has a website but I can't remember if it's .com or .org. You can google Tony Attwood and find it easily. Another good site is O.A.S.I.S. They have a good book too. You'll find alot of questions answered on this support group as well.boobala71bunny <boobala71bunny@...> wrote: I am new to this group and I am looking for any and all information dealing with raising a child with Asperger's Syndrome. My son is 15 and is JUST NOW getting this

diagnosis. After reading the different things that AS children exhibit, I am finding it increasingly difficult to understand why he has not been given this diagnosis sooner as he seems to be a text book case. It is my belief that the treatments administered to my son have not worked because they were focusing primarily on ADHD and depression.Please someone let me know what you think, how you deal with this disorder in your own home.... open to any and all suggestions.

[Guest guest]

Staci,

How do you go about finding an advocate to bring with you to an IEP?

What kind of services (by law) do the schools have to provide? Thanks

for ur help! --

>

> The same thing happened to us. My son is 14. Problem is.....when

our kids were little, not all the pdoc. knew how to recognize AS. We

finally lucked into one who had training with Emory Hosp. and knew

right away. It makes me sick to remember all the abuse Preston got

from teachers, etc. b/c everyone thought he was just a problem

child. I had taken to two differ. Dr. to help and no one saw the

AS. Because of this, he now has a lot of other 'issues' that we are

now dealing with. I don't have any advice for you b/c we are still

trying to figure everything out....but I would get an IEP and have

the school identify him as AS. They will not want to do this b/c

under this identity he is eligible for services that they will try to

not give you.

> FYI, don't ever go to an IEP meeting or anything like it w/o

someone. Preferably an advocate. Schools tell parents " no " in such

an authoritative way it makes it hard to stand up to them. Your

advocate can and will stand up for you.

> Good luck.

>

> mom to Preston with Ice, SD

>

> ( ) Newly Diagnosed

>

>

> I am new to this group and I am looking for any and all

information

> dealing with raising a child with Asperger's Syndrome. My son is

15

> and is JUST NOW getting this diagnosis. After reading the

different

> things that AS children exhibit, I am finding it increasingly

> difficult to understand why he has not been given this diagnosis

> sooner as he seems to be a text book case.

> It is my belief that the treatments administered to my son have

not

> worked because they were focusing primarily on ADHD and

depression.

> Please someone let me know what you think, how you deal with this

> disorder in your own home.... open to any and all suggestions.

>

[Guest guest]

www.yellowpagesforkids.com has advocates by state.

Tonya

Re: ( ) Newly Diagnosed

Staci,

How do you go about finding an advocate to bring with you to an IEP?

What kind of services (by law) do the schools have to provide? Thanks

for ur help! --

[Guest guest]

Thanks Tonya. I'm so behind in my emails I just saw this request.

RE: ( ) Newly Diagnosed

www.yellowpagesforkids.com has advocates by state.Tonya-----Original Message-----From: [mailto: ] On Behalf Of Sent: Wednesday, May 09, 2007 5:43 PM Subject: Re: ( ) Newly DiagnosedStaci,How do you go about finding an advocate to bring with you to an IEP? What kind of services (by law) do the schools have to provide? Thanks for ur help! --

[Guest guest]

, Sorry I'm so late with my reply. I have not been able to get on-line for a couple of days.

We are in Georgia and I'm on a network support e-list that has professionals on it. I called one of the advocates on the list and we have been working together ever sense. If you are in Ga. I can get you the name of the group. If you are not, let me know & I'll ask my list how you could find an advocate in your state.

Either email me privately or put my name in the subject so it will stand out. Sorry I'm so late in seeing your Q.

( ) Newly Diagnosed> > > I am new to this group and I am looking for any and all information > dealing with raising a child with Asperger's Syndrome. My son is 15 > and is JUST NOW getting this diagnosis. After reading the different > things that AS children exhibit, I am finding it increasingly > difficult to understand why he has not been given this diagnosis > sooner as he seems to be a text book case. > It is my belief that the treatments administered to my son have not > worked because they were focusing primarily on ADHD and depression.> Please someone let me know what you think, how you deal with this > disorder in your own home.... open to any and all suggestions.>

[Guest guest]

Happy

to help!

Tonya

Re: ( )

Newly Diagnosed

Thanks Tonya. I'm so behind in my emails I just

saw this request.

[Guest guest]

How much LDN are you taking and for how long? Could you be reacting to the filler if you are taking it in capsule form rather than as the transdermal cream Dr MCCandless developed or in liquid form without fillers? What is your diagnosis?

mjh

Posted by: "thedavisgroup2003" thedavisgroup2003@... thedavisgroup2003

Tue Jul 17, 2007 12:16 pm (PST)

Hello All here from MN. I was diagnosed earlier this month. I was wondering. Has anyone else experienced the hangover effect? (minus the headache) as I now call it. It is a constant lightheadedness and almost a dizziness without balance issues. It seems as if it gets better in the evening, after dark. Weird huh?. Does anyone know anything about such a symptom? Thanks (or Rob is Okay)Get a sneak peek of the all-new AOL.com.

[Guest guest]

,

Yes, I do also. As I said in response to someone else, I'm sleepy, kind of a drugged feeling during the day and evenings are always better for me.

Wanda

-------------- Original message -------------- From: "thedavisgroup2003" <thedavisgroup2003@...>

Hello All here from MN. I was diagnosed earlier this month. I was wondering. Has anyone else experienced the hangover effect? (minus the headache) as I now call it. It is a constant lightheadedness and almost a dizziness without balance issues. It seems as if it gets better in the evening, after dark. Weird huh?. Does anyone know anything about such a symptom? Thanks (or Rob is Okay)