Introduction

[Guest guest]

Hi Debi- My son is 6 years old and was diagnosed with ADHD two years ago. Since then he has showed signs of more problems such as the Impulsive behavior, Hyperness, poor motor skills, communication problems, lines things up, will not look at you when spoken too, all signs of Autism. So I took him to a Behavior Speacialist and sure enough he was diagnosed with Asperger's Syndrome. Now we are waiting for an appointment with the Physciatric Specialist...problem is he has heart problems so they cannot medicate him. I would call your local School Speach Therapist because they can help assist you with things as well. DesiraeRoxanna <madideas@...> wrote: Hi Debi, Welcome to our group! Feel free to join in anywhere! I think being dx'd with ADHD is fairly common for kids with AS. Seems like a lot of people come here after going through various other dx's that don't seem to fit everything. Other dx's include ODD or bipolar as well. RoxannaAutism Happens -----

Original Message ----- From: Bacasa3aol Aspergers Treatment Sent: Sunday, May 11, 2008 12:46 PM Subject: ( ) Introduction Hi everyone (and Happy Mother's Day to all the Mommies!). My name is Debi, and I have an 8 year old son, Austin, whom we are in the process of having evaluated for Aspergers. Austin was initially diagnosed with ADHD -- officially about a year and a half ago, although I think he started showing signs of "something" when he was probably

around 3 or 4. Austin is currently on Strattera, which seems to help a little. But, there seems to be things going on with him that I wouldn't think would be caused by the ADHD (although I could be completely wrong). I won't go into the list of symptoms that seem to fall into the Aspergers diagnosis, but there are quite a few. Basically, what I'm wondering at this point is how many of you have children who were initially diagnosed with ADHD? Also, if anyone is in the Pittsburgh area and has any recommendations for a good facility for treatment, I'd appreciate that as well. We're currently going through a University of Pittsburgh based facility and I can't say I've been overly impressed so far. I'm looking forward to being part of this group and getting to now all of you. Thanks! Debi Wondering what's for Dinner Tonight? Get new twists on family favorites at AOL Food. No virus found in this incoming message.Checked by AVG. Version: 8.0.100 / Virus Database: 269.23.16/1427 - Release Date: 5/11/2008 1:08 PM

[Guest guest]

Is he going to get an evaluation done? I would recommend it. If he does not have AS, he might have some other issues going on and maybe depression as well. It's worthwhile to find out!

RoxannaAutism Happens

Re: ( ) Re: Introduction

My son is 14 he is not diagnoised with aspergers but I believe he does have it. He is just not functioning age appropriately. He cries at inappropriate times like if I change his room around or ask him to clean it and yet when he broke his arm never cried or took an asprin for it. Can't stand sheets on his bed, long sleeve shirts and especially sweaters. Can't really make friends with anyone in his age group. I was wondering he seems to suffer from depression and despair is that a common part of it too. I am worried about him. any thoughts?smitch458 <smitch458 > wrote:

Hi Debi,And belated Happy Mother's Day to you too.Our ds who is 17 now was about 7 or so when he was diagnosed with ADD (didn't have the hyperactivity part).But as the years went on, it was apparant thathe didn't have the social skills to make friends.And he also had problems with his small motor skills.He knew he was different and he wasn't like other kids,and we started to see it too.It can be a stressful time for you, and I wish you luck.Sorry I can't help with a facility for you, as I am in New Jersey.Sharon>> Hi everyone (and Happy Mother's Day to all the Mommies!). My name is Debi, > and I have an 8 year old son, Austin, whom we are in the process of having > evaluated for Aspergers. Austin was initially diagnosed with ADHD -- > officially about a year and a half ago, although I think he started showing signs of > "something" when he was probably around 3 or 4. Austin is currently on > Strattera, which seems to help a little. But, there seems to be things going on > with him that I wouldn't think would be caused by the ADHD (although I could be > completely wrong). I won't go into the list of symptoms that seem to fall > into the Aspergers diagnosis, but there are quite a few. Basically, what I'm > wondering at this point is how many of you have children who were initially > diagnosed with ADHD? Also, if anyone is in the Pittsburgh area and has any > recommendations for a good facility for treatment, I'd appreciate that as well. > We're currently going through a University of Pittsburgh based facility and > I can't say I've been overly impressed so far. > > I'm looking forward to being part of this group and getting to now all of > you. Thanks!> > Debi> > > > **************Wondering what's for Dinner Tonight? Get new twists on family > favorites at AOL Food. > (http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)>

No virus found in this incoming message.Checked by AVG. Version: 8.0.100 / Virus Database: 269.23.16/1428 - Release Date: 5/12/2008 7:44 AM

[Guest guest]

Hi LeeAnne,

That's a tough one. I really don't have any real

remedies. But, how about between you and your Mother

you get together some type of plan of the things he

will be doing with her while your gone. I'm just

thinking that my distract him and excite him enough to

put the worry part away for a while. And of course

the reassurance that you WILL be returning to him and

that you will call him while your gone and get a cool

souvenir for him from Europe.

GOOD LUCK. And have a safe trip!

-

--- LeeAnne <justanotherjunkaddy@...> wrote:

> Hello! I'm a single mom with a 9-year-old son with

> Asperger's.

>

> I haven't looked through the messages, so I

> apologize if a similar

> question has been asked recently. I'm going on a

> trip to Europe next

> month and leaving my son with my mother. My son and

> my mom get along

> great, and I know he'll be well looked-after, but

> this is the first

> time I've ever been so far away from him, and for so

> long. My son

> isn't handling it well - he's quite literally

> worrying himself sick

> over it. He's been complaining of headaches, and

> when he's with me, he

> can't keep anything in his stomach (he does fine

> when he's at school).

>

> Does anyone have any suggestions on how to either

> keep him from

> thinking about it, or help him not worry about it so

> much? I'd really,

> really appreciate it!

>

>

[Guest guest]

I was just like your son! I freaked if my parents went to the grocery

store and were ten minutes later than I thought getting back. What if

the car crashed...etc. In hindsight as an adult, I wish that they had

MADE me do things to prove to myself that I could manage on my own.

It took me a long time to get over that insecure feeling, even as an

adult and I managed to pass the same fears along to DS! You think I

would know better! So more that you can make him feel capable...I

don't think most kids are worriers extrordinaire like I was.

Good luck and good trip...this is really good for both of you, IMHO.

Sue

> > >

> > > > Hello! I'm a single mom with a 9-year-old son with

> > > > Asperger's.

> > > >

> > > > I haven't looked through the messages, so I

> > > > apologize if a similar

> > > > question has been asked recently. I'm going on a

> > > > trip to Europe next

> > > > month and leaving my son with my mother. My son and

> > > > my mom get along

> > > > great, and I know he'll be well looked-after, but

> > > > this is the first

> > > > time I've ever been so far away from him, and for so

> > > > long. My son

> > > > isn't handling it well - he's quite literally

> > > > worrying himself sick

> > > > over it. He's been complaining of headaches, and

> > > > when he's with me, he

> > > > can't keep anything in his stomach (he does fine

> > > > when he's at school).

> > > >

> > > > Does anyone have any suggestions on how to either

> > > > keep him from

> > > > thinking about it, or help him not worry about it so

> > > > much? I'd really,

> > > > really appreciate it!

> > > >

> > > >

> > >

> > >

> > >

> >

>

[Guest guest]

Hi that is interesting sue. My son is in second grade. beginning of the school year, he would beg me to pick him up from outside the class and be early (before the class get out). I tried to resist and I thought by picking him up from carpool he will toughen up and get used to it. After a few months his anxiety got so bad that I promised him rain or shine no matter what I will be early outside his class waiting for him. But it is interesting that you wished your parents had tought you how to decrease your anxiety. Do you mean I should just talk to him about his fears and anxieties, instead of giving in and accomadating them? With my son I can not reason sometimes ( which is beacause of his AS I think). thanks and please elaborate on your suggestion. carolynsuelowerychattanooga <sue@...> wrote: I was just like your son! I freaked if my parents went to the grocery store and were ten minutes later than I thought getting back. What if the car crashed...etc. In hindsight as an adult, I wish that they had MADE me do things to prove to myself that I could manage on my own. It took me a long time to get over that insecure feeling, even as an adult and I managed to pass the same fears along to DS! You think I would know better! So more that you can make him feel capable...I don't think most kids are worriers extrordinaire like I was. Good luck and good trip...this is really

good for both of you, IMHO.Sue> > >> > > > Hello! I'm a single mom with a 9-year-old son with> > > > Asperger's.> > > >> > > > I haven't looked through the messages, so I> > > > apologize if a similar> > > > question has been asked recently. I'm going on a> > > > trip to Europe next> > > > month and leaving my son with my mother. My son and> > > > my mom get along> > > > great, and I know he'll be well looked-after, but> > > > this is the first> > > > time I've ever been so far away from him, and for so> > > > long. My son> > > > isn't handling it well - he's quite literally> > > > worrying himself sick> > >

> over it. He's been complaining of headaches, and> > > > when he's with me, he> > > > can't keep anything in his stomach (he does fine> > > > when he's at school).> > > >> > > > Does anyone have any suggestions on how to either> > > > keep him from> > > > thinking about it, or help him not worry about it so> > > > much? I'd really,> > > > really appreciate it!> > > >> > > >> > >> > > > > >> >>

[Guest guest]

A few thoughts.

It might be easier if your mother came and stayed at your home with

your son instead. That way he will feel more secure as he is home.

Second, another idea might be for him to stay with a friend during the

trip... Might take his mind off it by letting them plan what he and

his friend are going to do while together?

Use webcams to keep in touch... Might help a bit too.

Jim

>

> Hello! I'm a single mom with a 9-year-old son with Asperger's.

>

> I haven't looked through the messages, so I apologize if a similar

> question has been asked recently. I'm going on a trip to Europe next

> month and leaving my son with my mother. My son and my mom get along

> great, and I know he'll be well looked-after, but this is the first

> time I've ever been so far away from him, and for so long. My son

> isn't handling it well - he's quite literally worrying himself sick

> over it. He's been complaining of headaches, and when he's with me, he

> can't keep anything in his stomach (he does fine when he's at school).

>

> Does anyone have any suggestions on how to either keep him from

> thinking about it, or help him not worry about it so much? I'd really,

> really appreciate it!

>

[Guest guest]

Oh, gosh. It is such a fine line a parent walks! My parents were

really wonderful and did a great job and raised a happy kid. But, I

had so many worries and anxieties as a child. In those days no one

knew anything about AS. I think they blamed it all on my poor mother!

And, I don't think I ever expressed my anxieties to my parents, they

just knew they were dealing with a child who was anxious and afraid

of everything!

Maybe if you could have him (and you) imagine every possible

scenario, like " what if mom were stuck in traffic and late, what

would you do? " or " what if I sent the next door neighbor to pick you

up for what ever reason, what would you do? " Maybe even to the point

of what you might think ridiculous, " What if a big bear came along? "

And encourage him to come up with the answers, maybe that would make

him feel competent to handle anything that might come up. On the

other hand, you don't want to introduce new things to worry about

that he never even considered, like a bear. LOL

But go with your gut, if he is really anxious about this, I think it

is better to let him get a little older and feel more capable.

Are there other situations in which he is extremely anxious, too?

Sue in TN

> > > >

> > > > > Hello! I'm a single mom with a 9-year-old son with

> > > > > Asperger's.

> > > > >

> > > > > I haven't looked through the messages, so I

> > > > > apologize if a similar

> > > > > question has been asked recently. I'm going on a

> > > > > trip to Europe next

> > > > > month and leaving my son with my mother. My son and

> > > > > my mom get along

> > > > > great, and I know he'll be well looked-after, but

> > > > > this is the first

> > > > > time I've ever been so far away from him, and for so

> > > > > long. My son

> > > > > isn't handling it well - he's quite literally

> > > > > worrying himself sick

> > > > > over it. He's been complaining of headaches, and

> > > > > when he's with me, he

> > > > > can't keep anything in his stomach (he does fine

> > > > > when he's at school).

> > > > >

> > > > > Does anyone have any suggestions on how to either

> > > > > keep him from

> > > > > thinking about it, or help him not worry about it so

> > > > > much? I'd really,

> > > > > really appreciate it!

> > > > >

> > > > >

> > > >

> > > >

> > > >

> > >

> >

>

[Guest guest]

Maybe your mom can help with this. Does he have a "place" that's his by her house? Could you financially swing buying a comforter/something to put in his room when he's there or maybe have your mom and him go out and buy something together for when it's just them? Robincarolynsuelowerychattanooga <sue@...> wrote: I was just like your son! I freaked if my parents went to the grocery store and were ten minutes later than I thought getting back. What if the car

crashed...etc. In hindsight as an adult, I wish that they had MADE me do things to prove to myself that I could manage on my own. It took me a long time to get over that insecure feeling, even as an adult and I managed to pass the same fears along to DS! You think I would know better! So more that you can make him feel capable...I don't think most kids are worriers extrordinaire like I was. Good luck and good trip...this is really good for both of you, IMHO.Sue> > >> > > > Hello! I'm a single mom with a 9-year-old son with> > > > Asperger's.> > > >> > > > I haven't looked through the messages, so I> > > > apologize if a similar> > > > question has been asked recently. I'm going on a> > > > trip to Europe

next> > > > month and leaving my son with my mother. My son and> > > > my mom get along> > > > great, and I know he'll be well looked-after, but> > > > this is the first> > > > time I've ever been so far away from him, and for so> > > > long. My son> > > > isn't handling it well - he's quite literally> > > > worrying himself sick> > > > over it. He's been complaining of headaches, and> > > > when he's with me, he> > > > can't keep anything in his stomach (he does fine> > > > when he's at school).> > > >> > > > Does anyone have any suggestions on how to either> > > > keep him from> > > > thinking about it, or help him not worry about it so> > > > much? I'd really,> > > > really appreciate

it!> > > >> > > >> > >> > > > > >> >>

[Guest guest]

I would suggest BUSPAR / BUSPIRONE (those are the two main names of it)---for ANXIETY; we can actually drive and stop appropriately NOW. Our 14 year old had me nearly wrecking FOR REAL because 1/4 mile away from someone LITERALLY, I was going to hit them, he would be screaming, etc., and make me think I was missing something to the point I would freak out. It was sooooo bad; he rarely does ANYTHING like this now; BUSPAR has SAVED our lives (and his!!!but really, all of us!!!!)---------------he was dangerous because he would make us think things that were NOT wrong were WRONG, and we react like ANYONE would if they thought they were about to crash, etc. We had jets killing us by landing inside our home; he would worry about people at the gas station putting diesel in the gas and gas in the diesel tanks by accident, and what the ramifications of that would be, and whether we would all die like a bomb blast since a station was only about 1/2 miles from our home due to this mix up (which never happened but in his mind at the time)-------------dear LORD..........so, I would consider and urge consideration of medication and ask for buspar------------it has improved our lives 10 times plus!!

Ruthie

From: farmlass@...Date: Thu, 29 May 2008 15:00:23 +0000Subject: Re: ( ) Introduction

AS kids don't like change of any sort, so I can understand that thatalone would worry him, but they are also the "what if" kids. "What ifthe plane crashes?" "What if you don't want to come back?" etc.... Andyou can't reassure them with platitudes like other kids, because theyknow so much and fully realize that grownups don't always have controlover life events. I think I would address his what ifs as best youcan, then set up, in writing, a schedule of his day if he has certainroutines that must be followed. Even though your Mom probably knowsperfectly well how it all works, the schedule is for your son to feelsome control over events. I would also give him a chart to help trackyour trip, with something special to look forward to for each day. Hecan put the sticker on the chart, or the pin on the map or however youwant to do it. If you are seeing a counselor, it might be good for himto talk to him/her right now, too. Poor guy, but they have to adjustto the changes life brings. I just wish it were easier for them. Bestof everything and safe and fun trip. Lori> >> > > Hello! I'm a single mom with a 9-year-old son with> > > Asperger's.> > >> > > I haven't looked through the messages, so I> > > apologize if a similar> > > question has been asked recently. I'm going on a> > > trip to Europe next> > > month and leaving my son with my mother. My son and> > > my mom get along> > > great, and I know he'll be well looked-after, but> > > this is the first> > > time I've ever been so far away from him, and for so> > > long. My son> > > isn't handling it well - he's quite literally> > > worrying himself sick> > > over it. He's been complaining of headaches, and> > > when he's with me, he> > > can't keep anything in his stomach (he does fine> > > when he's at school).> > >> > > Does anyone have any suggestions on how to either> > > keep him from> > > thinking about it, or help him not worry about it so> > > much? I'd really,> > > really appreciate it!> > >> > >> >> > > >>

[Guest guest]

Please remember that every child is different. Just because one medicine worked for one child doesn't mean it will work for another. For medication related decisions, your doctor is the expert.LizOn May 29, 2008, at 9:42 PM, BRYAN DOLEZAL wrote:I would suggest BUSPAR / BUSPIRONE (those are the two main names of it)---for ANXIETY; we can actually drive and stop appropriately NOW. Our 14 year old had me nearly wrecking FOR REAL because 1/4 mile away from someone LITERALLY, I was going to hit them, he would be screaming, etc., and make me think I was missing something to the point I would freak out. It was sooooo bad; he rarely does ANYTHING like this now; BUSPAR has SAVED our lives (and his!!!but really, all of us!!!!)---------------he was dangerous because he would make us think things that were NOT wrong were WRONG, and we react like ANYONE would if they thought they were about to crash, etc. We had jets killing us by landing inside our home; he would worry about people at the gas station putting diesel in the gas and gas in the diesel tanks by accident, and what the ramifications of that would be, and whether we would all die like a bomb blast since a station was only about 1/2 miles fro m our home due to this mix up (which never happened but in his mind at the time)-------------dear LORD..........so, I would consider and urge consideration of medication and ask for buspar------------it has improved our lives 10 times plus!! Ruthie From: farmlasshotmailDate: Thu, 29 May 2008 15:00:23 +0000Subject: Re: ( ) IntroductionAS kids don't like change of any sort, so I can understand that thatalone would worry him, but they are also the "what if" kids. "What ifthe plane crashes?" "What if you don't want to come back?" etc.... Andyou can't reassure them with platitudes like other kids, because theyknow so much and fully realize that grownups don't always have controlover life events. I think I would address his what ifs as best youcan, then set up, in writing, a schedule of his day if he has certainroutines that must be followed. Even though your Mom probably knowsperfectly well how it all works, the schedule is for your son to feelsome control over events. I would also give him a chart to help trackyour trip, with something special to look forward to for each day. Hecan put the sticker on the chart, or the pin on the map or however youwant to do it. If you are seeing a counselor, it might be good for himto talk to him/her right now, too. Poor guy , but they have to adjustto the changes life brings. I just wish it were easier for them. Bestof everything and safe and fun trip. Lori> >> > > Hello! I'm a single mom with a 9-year-old son with> > > Asperger's.> > >> > > I haven't looked through the messages, so I> > > apologize if a similar> > > question has been asked recently. I'm going on a> > > trip to Europe next> > > month and leaving my so n with my mother. My son and> > > my mom get along> > > great, and I know he'll be well looked-after, but> > > this is the first> > > time I've ever been so far away from him, and for so> > > long. My son> > > isn't handling it well - he's quite literally> > > worrying himself sick> > > over it. He's been complaining of headaches, and> > > when he's with me, he> > > can't keep anything in his stomach (he does fine> > > when he's at school).> > >> > > Does anyone have any suggestions on how to either> > > keep him from> > > thinking about it, or help him not worry about it so> > > much? I'd really,> > > really appreciate it!> > >> > >> >> > > >>

[Guest guest]

I agree with that but this one is just for Anxiety. We just wanted to medicate anxiety with our now 7 year old. There are other meds..........SORRY, didn't mean to advertise a specific DRUG here----I said I would suggest it----but I guess I should have said, I suggest medicating for ANXIETY----we do, and use Buspar and are thrilled with it (I have heard some say that it did not work for them---like all meds, that is a possibility)----------thought you would like to know the name of one, 'cuz our doctor typically asks us what we had in mind, and knows that one of my psyche unit nursing friends at the University of Iowa Hospitals and Clinics and professionals on our team have suggested something that we have researched and we work together that way---------------we then, have made sure those ideas will work with our son's cocktail of drugs prior to asking about them............................

Ruthie

From: lbohn@...Date: Fri, 30 May 2008 13:41:38 -0400Subject: Re: ( ) Introduction

Please remember that every child is different. Just because one medicine worked for one child doesn't mean it will work for another. For medication related decisions, your doctor is the expert.

Liz

On May 29, 2008, at 9:42 PM, BRYAN DOLEZAL wrote:

I would suggest BUSPAR / BUSPIRONE (those are the two main names of it)---for ANXIETY; we can actually drive and stop appropriately NOW. Our 14 year old had me nearly wrecking FOR REAL because 1/4 mile away from someone LITERALLY, I was going to hit them, he would be screaming, etc., and make me think I was missing something to the point I would freak out. It was sooooo bad; he rarely does ANYTHING like this now; BUSPAR has SAVED our lives (and his!!!but really, all of us!!!!)---------------he was dangerous because he would make us think things that were NOT wrong were WRONG, and we react like ANYONE would if they thought they were about to crash, etc. We had jets killing us by landing inside our home; he would worry about people at the gas station putting diesel in the gas and gas in the diesel tanks by accident, and what the ramifications of that would be, and whether we would all die like a bomb blast since a station was only about 1/2 miles fro m our home due to this mix up (which never happened but in his mind at the time)-------------dear LORD..........so, I would consider and urge consideration of medication and ask for buspar------------it has improved our lives 10 times plus!! Ruthie

From: farmlasshotmailDate: Thu, 29 May 2008 15:00:23 +0000Subject: Re: ( ) Introduction

AS kids don't like change of any sort, so I can understand that thatalone would worry him, but they are also the "what if" kids. "What ifthe plane crashes?" "What if you don't want to come back?" etc.... Andyou can't reassure them with platitudes like other kids, because theyknow so much and fully realize that grownups don't always have controlover life events. I think I would address his what ifs as best youcan, then set up, in writing, a schedule of his day if he has certainroutines that must be followed. Even though your Mom probably knowsperfectly well how it all works, the schedule is for your son to feelsome control over events. I would also give him a chart to help trackyour trip, with something special to look forward to for each day. Hecan put the sticker on the chart, or the pin on the map or however youwant to do it. If you are seeing a counselor, it might be good for himto talk to him/her right now, too. Poor guy , but they have to adjustto the changes life brings. I just wish it were easier for them. Bestof everything and safe and fun trip. Lori> >> > > Hello! I'm a single mom with a 9-year-old son with> > > Asperger's.> > >> > > I haven't looked through the messages, so I> > > apologize if a similar> > > question has been asked recently. I'm going on a> > > trip to Europe next> > > month and leaving my so n with my mother. My son and> > > my mom get along> > > great, and I know he'll be well looked-after, but> > > this is the first> > > time I've ever been so far away from him, and for so> > > long. My son> > > isn't handling it well - he's quite literally> > > worrying himself sick> > > over it. He's been complaining of headaches, and> > > when he's with me, he> > > can't keep anything in his stomach (he does fine> > > when he's at school).> > >> > > Does anyone have any suggestions on how to either> > > keep him from> > > thinking about it, or help him not worry about it so> > > much? I'd really,> > > really appreciate it!> > >> > >> >> > > >>

[Guest guest]

Hello,

I have not tried natural or homeopathic treatments. Others here have

and I am sure that you will get a response. I am just starting

Enbrel this Friday so I am just not any help, sorry.

I did want to welcome you and encourage anything that you have to

share.

Shirley

>

> Hi there, I was referred to this group by a friend of a friend.

Here's

> my story. I was diagnosed with Sero Negative Spondyloarthropathy

> (arthritis of the spine) almost 5 years ago. I was immeditately

put on

> Enbrel injections and I went from barely being able to walk, to

being

> back to normal. But now after hearing all the side effects from

the

> Enbrel and possible links to major diseases, I'm not comfortable

taking

> it. It also hasn't really been working for me over the past year

or

> so. I can't even begin to tell you the last time I've

felt " good " . I

> was wondering if anybody had any natural or homeopathic treatments

for

> this condition. I've spoken with my rheumatologist and it's going

to

> take weeks for me to even get in there to see her and discuss an

> alternative treatment plan. I have to see military doctors so I

don't

> have the option to just find a new dr. I guess my other question

is

> does anybody else take Enbrel and if so have you had any trouble

with

> it. Thanks in advance and I look forward to meeting others who

know

> what my life is like!!!

>

[Guest guest]

I have seen a naturopath (not covered by insurance and kind of expensive) who

was helpful.  I have also used acupuncture (sometimes covered by insurance) and

craniosacral therapy (if a physical therapist does this it is usually covered by

insurance and some massage therapists).  I take many supplements and have tried

dietary changes as well which I believe help also.  However, I don't use any of

them in place of medication.  Just as an adjunct to it.  I take Plaquenil.  I

resisted it at first, but after a flare I really try to take it faithfully as I

don't want the RA to progress. 

 

Hope this helps,

 

 

[ ] Introduction

Hi there, I was referred to this group by a friend of a friend. Here's

my story. I was diagnosed with Sero Negative Spondyloarthropathy

(arthritis of the spine) almost 5 years ago. I was immeditately put on

Enbrel injections and I went from barely being able to walk, to being

back to normal. But now after hearing all the side effects from the

Enbrel and possible links to major diseases, I'm not comfortable taking

it. It also hasn't really been working for me over the past year or

so. I can't even begin to tell you the last time I've felt " good " . I

was wondering if anybody had any natural or homeopathic treatments for

this condition. I've spoken with my rheumatologist and it's going to

take weeks for me to even get in there to see her and discuss an

alternative treatment plan. I have to see military doctors so I don't

have the option to just find a new dr. I guess my other question is

does anybody else take Enbrel and if so have you had any trouble with

it. Thanks in advance and I look forward to meeting others who know

what my life is like!!!

[Guest guest]

I have been on Enbrel for over five years, and have had no adverse side

effects from it. It works very well to keep my RA in check. Alternative

treatments should be in addition to, and not in place of, other

treatment, in my opinion. Joint damage is permanent.

Sue

On Tuesday, September 9, 2008, at 10:11 AM, christianencourager31

wrote:

> I guess my other question is

> does anybody else take Enbrel and if so have you had any trouble with

> it.

>

[Guest guest]

As far as natural remedies, I've been researching the role of diet and the

immune system on Rheumatoid Arthritis and have found that a lot of what we eat

can set off flares and inflammation. It can also help to control pain and

inflammation. I met a UK doctor online yesterday who's been suffering from RA

for many years. She told me she's treating it with diet only since she cannot

tolerate any of the meds. She says she's healthier now than she was before.

I've been following an Elimination Diet that I found on the internet the past

few days and I can tell you that when I cheat, my body lets me know immediately.

For example, yesterday I had oatmeal cooked with raisins and cinnamon for

breakfast. No sugar, no milk, no coffee for breakfast. For lunch and dinner I

steamed some brown rice with vegetables,onions, garlic and a little low-sodium

chicken boullion. I felt pretty good all day and evening. Then late last night I

gave in (I'm trying to quit smoking also) and had some chocolate frosted

brownies that I made from a box for the family the other day. Within five

minutes the pain in my legs and feet became excruciating again. I'm really

starting to believe that diet has a lot to do with it. Today I steamed some

brown rice again with some frozen stir-fry vegees, some Chinese five-spice

powder, some pears from the tree in the back yard, a handful of raisins. I added

some thawed and browned deer meat that my daughter got from hunting last year

with some garlic and onion and added it to the rice. Again, I felt pretty good

again today, even though I've been in major pain for the past couple weeks

straight. And no brownies tonight either!!!

The reason I'm throwing together such weird concoctions is because I can't

afford to go food shopping. Haven't been able to for a couple weeks now, so I

can assure you that I am not one of those people who can afford to buy organic

foods at the health store. I can't even afford to buy toilet paper right now.

Also, fish oil is great for RA, it calms my pain down within an hour whenever I

take it. Bromelain from pineapples is also good for pain and inflammation. There

are many more like ginger, and turmeric. Hope this helps.

[ ] Introduction

Hi there, I was referred to this group by a friend of a friend. Here's

my story. I was diagnosed with Sero Negative Spondyloarthropathy

(arthritis of the spine) almost 5 years ago. I was immeditately put on

Enbrel injections and I went from barely being able to walk, to being

back to normal. But now after hearing all the side effects from the

Enbrel and possible links to major diseases, I'm not comfortable taking

it. It also hasn't really been working for me over the past year or

so. I can't even begin to tell you the last time I've felt " good " . I

was wondering if anybody had any natural or homeopathic treatments for

this condition. I've spoken with my rheumatologist and it's going to

take weeks for me to even get in there to see her and discuss an

alternative treatment plan. I have to see military doctors so I don't

have the option to just find a new dr. I guess my other question is

does anybody else take Enbrel and if so have you had any trouble with

it. Thanks in advance and I look forward to meeting others who know

what my life is like!!!

[Guest guest]

Christian and group;

Christian I am taking humirra injections. I had the option of taking

humirra or enbrel. I chose humirra cause it every 2 weeks instead of

every week. I just started it last week. Only difference I see now

is its not so hard to get up in the morning.

I am completely helpless with RA, fibro and Osteo. I would take

anything to stop this pain. That is me though. Only thing I can do

on my own is eat and sleep. I am so sorry you have such a dx.

Welcome to the group. There are many kind people here. I enjoy

reading all the post. This group helps me so much with their kind

words and caring post. I hope you will get the info you need.

gentle kind hugs

Clora

[Guest guest]

i have been on enbrel for about 10 years.i's 56 now.no side affects.

not working as well as it did in the beginning.

also on predsione,and pain medicine.had ra since i was 32

i take one day at a time.ra doctors are very busy

fell better

ann

From: nana2livi <s.p5315@...>

Subject: [ ] Re: Introduction

Date: Tuesday, September 9, 2008, 2:08 PM

Hello,

I have not tried natural or homeopathic treatments. Others here have

and I am sure that you will get a response. I am just starting

Enbrel this Friday so I am just not any help, sorry.

I did want to welcome you and encourage anything that you have to

share.

Shirley

>

> Hi there, I was referred to this group by a friend of a friend.

Here's

> my story. I was diagnosed with Sero Negative Spondyloarthropathy

> (arthritis of the spine) almost 5 years ago. I was immeditately

put on

> Enbrel injections and I went from barely being able to walk, to

being

> back to normal. But now after hearing all the side effects from

the

> Enbrel and possible links to major diseases, I'm not comfortable

taking

> it. It also hasn't really been working for me over the past year

or

> so. I can't even begin to tell you the last time I've

felt " good " . I

> was wondering if anybody had any natural or homeopathic treatments

for

> this condition. I've spoken with my rheumatologist and it's going

to

> take weeks for me to even get in there to see her and discuss an

> alternative treatment plan. I have to see military doctors so I

don't

> have the option to just find a new dr. I guess my other question

is

> does anybody else take Enbrel and if so have you had any trouble

with

> it. Thanks in advance and I look forward to meeting others who

know

> what my life is like!!!

>

[Guest guest]

WELCOME TO THE GROUP! i have arthritis all over.. i don't take enbrel, SORRY but

others in this group do. hopefully u will get some responses.

i take everything else though, it sux totally!!!!!!!!!! there's a new product

called WIN MY BROTHER SELLS IT & IT'S ALL NATURAL. if interested let me know

i could give u the website to check it out......... i've tried some of the

products & they WORKED for me.. like i say though, EVERYBODY is

different.. i HOPE u feel BETTER SOON! god bless,melyndagamez 9/9/08 8:20p.m.ct.

[ ] Introduction

Hi there, I was referred to this group by a friend of a friend.  Here's

my story.  I was diagnosed with Sero Negative Spondyloarthropathy

(arthritis of the spine) almost 5 years ago.  I was immeditately put on

Enbrel injections and I went from barely being able to walk, to being

back to normal.  But now after hearing all the side effects from the

Enbrel and possible links to major diseases, I'm not comfortable taking

it.  It also hasn't really been working for me over the past year or

so.  I can't even begin to tell you the last time I've felt " good " .  I

was wondering if anybody had any natural or homeopathic treatments for

this condition.  I've spoken with my rheumatologist and it's going to

take weeks for me to even get in there to see her and discuss an

alternative treatment plan.  I have to see military doctors so I don't

have the option to just find a new dr.  I guess my other question is

does anybody else take Enbrel and if so have you had any trouble with

it.  Thanks in advance and I look forward to meeting others who know

what my life is like!!!

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

[Guest guest]

Welcome,

Sorry about your diagnose, but glad you found this group through your

friend. I have been off and on biologic meds for about four years.

I was on Enbrel for awhile, and back on Humira for the second time,

along with mtx.

With the disease, each year I get a little worse. I use to think,

the meds wasn't working for me. But, going off them for a short

time, I can tell the difference. Without the meds, I would probably

be bed-ridden. The meds are scary, but then I think how I might be,

and that is MORE scary for me.

I haven't had any major problems with the meds. I am always

fatigued, and I can't do much, but I can still take care of myself.

I believe, this is just a part of the RA. I don't think any med can

make me feel like I use to, but it keeps me going.

Anywho, just my two cents, hope it helps.

Good luck, and keep us posted, Tawny

>

> Hi there, I was referred to this group by a friend of a friend.

Here's

> my story. I was diagnosed with Sero Negative Spondyloarthropathy

> (arthritis of the spine) almost 5 years ago. I was immeditately

put on

> Enbrel injections and I went from barely being able to walk, to

being

> back to normal. But now after hearing all the side effects from

the

> Enbrel and possible links to major diseases, I'm not comfortable

taking

> it. It also hasn't really been working for me over the past year

or

> so. I can't even begin to tell you the last time I've

felt " good " . I

> was wondering if anybody had any natural or homeopathic treatments

for

> this condition. I've spoken with my rheumatologist and it's going

to

> take weeks for me to even get in there to see her and discuss an

> alternative treatment plan. I have to see military doctors so I

don't

> have the option to just find a new dr. I guess my other question

is

> does anybody else take Enbrel and if so have you had any trouble

with

> it. Thanks in advance and I look forward to meeting others who

know

> what my life is like!!!

>

[Guest guest]

Hi Carey -

Welcome to the group! We got our band from CIRS in Oakland as well and had

a very good experience there. You should be in good hands. Let me know if

you have any questions about them.

Molly

Novato, California

Nicolas, 2.5, tort & plagio, STARband (CIRS Oakland) 4/24/06-9/12/06,

Graduate!

, 5.5

, 8.5

introduction

I've been lurking for a few weeks & thought I should introduce myself

I've got almost 6 month old b/g twins - Our son has a flat head and

he's got a preference for his right side. Our pedi at first said he

thought it would just correct itself over time (and to his defense our

oldest son had a flat spot too that totally rounded out once he became

mobile). However, our twins were born 6 weeks early, so they likely

won't be as mobile as soon due to developmental delay. Long story

short - we've seen a specialist and he measured our son's head. The

diagonal difference was 10mm (anything over 10mm gets a helmet

referral from him) and his CI was .93 - the specialist said he was 99%

sure it would correct itself with aggressive repositioning and time.

We decided to give it a month and there was a 4mm diagonal difference

improvement which we were very happy about - however, I think his head

has gotten wider (we had him remeasured last week by a PT who did not

know how to measure for CI). So next week we've got an appt in

Oakland, CA to get scanned for a StarBand. By the time he gets into

the helmet he'll be closer to 7 months old. I hope it's not too late.

As far as tort - the specialist said he didn't see any, but the PT

said she thought he had a little bit which would explain his right

sided preference. She also said to limit exersaucer time to 15-20

minutes. She suggested using the Bumbo chair instead. She also

suggested the Summer Infant 3 Stage Super Seat which is like a

Bumbo/exersaucer combo. She said the way babies are positioned in the

seats is better for them vs. exersaucers & jumperoos.

Anyhow... that's where we're at right now! This board has given me a

lot of great info so far - thank you!!!

--Carey

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

For more plagio info

[Guest guest]

I think banding for the brachy is a good idea. It is hard to correct

brachy with repo since you have extra width and sometimes height. My

daughter got her band at 5 mo old. She started around 96%, and

graduated at 85% (5 mo later). She got her band at CIRS in palo alto.

Good luck with everything.

-christine

sydney 2.5 yrs starband grad.

>

> I've been lurking for a few weeks & thought I should introduce myself

>

> I've got almost 6 month old b/g twins - Our son has a flat head and

> he's got a preference for his right side. Our pedi at first said he

> thought it would just correct itself over time (and to his defense our

> oldest son had a flat spot too that totally rounded out once he became

> mobile). However, our twins were born 6 weeks early, so they likely

> won't be as mobile as soon due to developmental delay. Long story

> short - we've seen a specialist and he measured our son's head. The

> diagonal difference was 10mm (anything over 10mm gets a helmet

> referral from him) and his CI was .93 - the specialist said he was 99%

> sure it would correct itself with aggressive repositioning and time.

> We decided to give it a month and there was a 4mm diagonal difference

> improvement which we were very happy about - however, I think his head

> has gotten wider (we had him remeasured last week by a PT who did not

> know how to measure for CI). So next week we've got an appt in

> Oakland, CA to get scanned for a StarBand. By the time he gets into

> the helmet he'll be closer to 7 months old. I hope it's not too late.

>

> As far as tort - the specialist said he didn't see any, but the PT

> said she thought he had a little bit which would explain his right

> sided preference. She also said to limit exersaucer time to 15-20

> minutes. She suggested using the Bumbo chair instead. She also

> suggested the Summer Infant 3 Stage Super Seat which is like a

> Bumbo/exersaucer combo. She said the way babies are positioned in the

> seats is better for them vs. exersaucers & jumperoos.

>

> Anyhow... that's where we're at right now! This board has given me a

> lot of great info so far - thank you!!!

>

> --Carey

>

[Guest guest]

Marie,

Your 4 year old sounds like my 4 year old. He went into distress

due to his umbilical cord being wrapped around his neck twice. So

needless to say when he was descending he was strangling himself.

Thankfully, they did an emergency c-section once they saw how he was

going into such distress and he did remarkably well once he was

born.

I feel just like you do/did. I knew something was wrong but hoped

he would grow out of it and catch up. Once my daughter was born 14

months later it really made me realize that we needed to do

something. He started early intervention right around the time he

turned 2. Now he's in a great early childhood program and has made

great strides. We are now looking for additional things for him to

help him and us along in this process.

We just got a diagnosis in September of high-functioning autism but

were told as he ages it will be considered aspergers. I've been

lurking quite a bit since it doesn't seem like there are many on

this board that have littler ones and my problems/concerns are

totally different than those who have older kids. So it's nice to

see someone else with younger ones.

Well, I just wanted to say " hi " and I'm happy to see someone else

with a child my son's age!!

>

>

> Hi everyone, I joined this group and then desperatly rattled off

questions which all of you so graciously answered. I realized I

didn't really introduce myself!

>  

> I am a mom of two boys, the ages of 4 and 2! Our four year old is

going through the process of being diagnosed with Asperger's and

whatever else they can find. We have known something was unusual

about our four year old since birth but no one could put their

finger on it. He was with out oxygen during the birthing process and

I have read a study that said 50% of asperger's syndrome were

without oxygen. When we had our second baby we knew for sure our

first child needed some help and we could no longer explain away his

differences. My husband and I both have gone through a cycle of

KNOWING somehing was wrong to doubting ourselves while saying, he

will gorw out of whatever he was doing at the time.

>  

> We live in Texas and are very much alone in this entire process so

I am so glad I found this group!

>  

> thanks for everything,

>  

> Marie

>

[Guest guest]

Hi I'm new to this group. Glad to be here. Just wanted to throw my

2 cents in about a difficult birth. I pushed with my 7.10 year old

for 9 hours and then when he came out he had the cord wrapped around

his neck twice and was in oxygen distress. The hospital didn't

seemed to be too concerned, but I know in my heart that had

something to do with my son's issues.

> >

> >

> > Hi everyone, I joined this group and then desperatly rattled off

> questions which all of you so graciously answered. I realized I

> didn't really introduce myself!

> >  

> > I am a mom of two boys, the ages of 4 and 2! Our four year old

is

> going through the process of being diagnosed with Asperger's and

> whatever else they can find. We have known something was unusual

> about our four year old since birth but no one could put their

> finger on it. He was with out oxygen during the birthing process

and

> I have read a study that said 50% of asperger's syndrome were

> without oxygen. When we had our second baby we knew for sure our

> first child needed some help and we could no longer explain away

his

> differences. My husband and I both have gone through a cycle of

> KNOWING somehing was wrong to doubting ourselves while saying, he

> will gorw out of whatever he was doing at the time.

> >  

> > We live in Texas and are very much alone in this entire process

so

> I am so glad I found this group!

> >  

> > thanks for everything,

> >  

> > Marie

> >

>

[Guest guest]

Hello and Welcome!!!! This is a GREAT group...so many people with a lot of knowledge!!!! You son is young...4 years old....mine is 13. You are so lucky....you have advantage of time....I never knew until last year when he was 12...When he was in 3rd grade they thought it as ADHD....

You can now understand your child more...realize why he acts or thinks or does what he does...it will make sense to you. You can also start working with him on social cues and behavioral issues...plus you can get him started early on services...

Being dx with AS is not the end of the world...Aspie are a gift...they look at the world in another way...a different way but not a BAD way. And, now that you know...you can understand your child better, prepare the schools and adults....educate others...

In addtion...remember our children were 4 too! So, you can always post and I know we can all help...I have gotten some awesome help from everyone!

Jan

Janice Rushen

"I will try to be open to all avenues of wisdom and hope"

From: <kmsmorris@...>Subject: ( ) Re: Introduction Date: Friday, November 7, 2008, 6:21 PM

Marie,Your 4 year old sounds like my 4 year old. He went into distress due to his umbilical cord being wrapped around his neck twice. So needless to say when he was descending he was strangling himself. Thankfully, they did an emergency c-section once they saw how he was going into such distress and he did remarkably well once he was born. I feel just like you do/did. I knew something was wrong but hoped he would grow out of it and catch up. Once my daughter was born 14 months later it really made me realize that we needed to do something. He started early intervention right around the time he turned 2. Now he's in a great early childhood program and has made great strides. We are now looking for additional things for him to help him and us along in this process.We just got a diagnosis in September of high-functioning autism but were told as he ages it will be considered

aspergers. I've been lurking quite a bit since it doesn't seem like there are many on this board that have littler ones and my problems/concerns are totally different than those who have older kids. So it's nice to see someone else with younger ones.Well, I just wanted to say "hi" and I'm happy to see someone else with a child my son's age!!>> > Hi everyone, I joined this group and then desperatly rattled off questions which all of you so graciously answered. I realized I didn't really introduce myself! > > I am a mom of two boys, the ages of 4 and 2! Our four year old is going through the process of being diagnosed with Asperger's and whatever else they can find. We have known

something was unusual about our four year old since birth but no one could put their finger on it. He was with out oxygen during the birthing process and I have read a study that said 50% of asperger's syndrome were without oxygen. When we had our second baby we knew for sure our first child needed some help and we could no longer explain away his differences. My husband and I both have gone through a cycle of KNOWING somehing was wrong to doubting ourselves while saying, he will gorw out of whatever he was doing at the time.> > We live in Texas and are very much alone in this entire process so I am so glad I found this group!> > thanks for everything,> > Marie>

[Guest guest]

Thanks Jan! I know that everyone's little ones were once 4 but it's

hard to relate when it seems like everyone is dealing more with

social issues and other older school issues. It's nice to see

someone else going through similar things that I am going through.

I agree that this is a great group and a great resource. I look up

to everyone with older kids as they give me hope that things will be

okay as my little guy grows.

My biggest problem right now is getting people to understand J.T.'s

differences not just look at him like something is wrong with him.

He's just perfect the way he is in our eyes. It's been a bigger

battle with my in-laws than with my family. Then you have all the

strangers to contend with while you are shopping or out somewhere

and they have no clue what you are dealing with but the stares and

comments when your child is acting less than perfect. I did have the

guts to say something one time to a stranger who decided it was his

place to say what he would do if my son were his child. I stopped

him before he started and said " The moment you start helping to

raise my child or giving monetary support then that's when I'll be

willing to listen to what you would do if he were your child. " It

shut him up and I actually felt pretty good and then was able to

handle J.T. much better. The cashier at the store said she was

impressed that I said something and did it in a nice manner rather

than being rude or cussing. Well that's not in my nature so I think

I handled it well.

Thanks for listening!

> >

> >

> > Hi everyone, I joined this group and then desperatly rattled off

> questions which all of you so graciously answered. I realized I

> didn't really introduce myself!

> >  

> > I am a mom of two boys, the ages of 4 and 2! Our four year old

is

> going through the process of being diagnosed with Asperger's and

> whatever else they can find. We have known something was unusual

> about our four year old since birth but no one could put their

> finger on it. He was with out oxygen during the birthing process

and

> I have read a study that said 50% of asperger's syndrome were

> without oxygen. When we had our second baby we knew for sure our

> first child needed some help and we could no longer explain away

his

> differences. My husband and I both have gone through a cycle of

> KNOWING somehing was wrong to doubting ourselves while saying, he

> will gorw out of whatever he was doing at the time.

> >  

> > We live in Texas and are very much alone in this entire process

so

> I am so glad I found this group!

> >  

> > thanks for everything,

> >  

> > Marie

> >

>