update

[Guest guest]

Good sharon,, It will still take time to really feel "alot" better but you will be using more INF and Riba so it may just be a temporary bandaid,, but hopefully you will get the procrit and that should help to at least keep you from feeling WORSE... ya know ? Ribavrin causes the hemolytic anemia,, reduces the RBC's and hemoglobin, take procrit for that,, then, , the Pegylated Interferon causes white cell anemia and you take neupogen for that... does that make better sense?,, sharon <csharonxoxo@...> wrote: Hello, Jackie, Liz and all those who offered support and advice for my low blood count plight.I went to the hematologist and he suggested that I get transfused, so that very day, I received 2 units of blood and am feeling some better. Still not good, but at least not so breathless and anaerobic.He suggested this because Medicare is now fussing about having to pay for the procrit class and neupogen class of drugs. Each case has to be pre-approved and that takes a couple of weeks, so this was the next best alternative.I'e also gotten some misconceptions in my Norsky head. I thought that the ribaviran was the blood cell culprit - that it was killing the cells. I find from the doc that tit's the infergen that does it; suppresses the bone marrow and far less blood is produced.Each time I think I are smart, I get wacked. lol That's teach me not to think I are smart, huh?

lolSharonJackie

[Guest guest]

Yes, I had it in my head straight, but when doc said I was wrong, I believed him too. He's also an Oncologist, perhaps there's more in his head to make it relate the way he said it?? Sharon Re: UpdateGood sharon,, It will still take time to really feel "alot" better but you will be using more INF and Riba so it may just be a temporary bandaid,, but hopefully you will get the procrit and that should help to at least keep you from feeling WORSE... ya know ?Ribavrin causes the hemolytic anemia,, reduces the RBC's and hemoglobin, take procrit for that,, then,, the Pegylated Interferon causes white cell anemia and you take neupogen for that... does that make better sense?,, sharon <csharonxoxo@...> wrote:Hello, Jackie, Liz and all those who offered support and advice for my low blood count plight.I went to the hematologist and he suggested that I get transfused, so that very day, I received 2 units of blood and am feeling some better. Still not good, but at least not so breathless and anaerobic.He suggested this because Medicare is now fussing about having to pay for the procrit class and neupogen class of drugs. Each case has to be pre-approved and that takes a couple of weeks, so this was the next best alternative.I'e also gotten some misconceptions in my Norsky head. I thought that the ribaviran was the blood cell culprit - that it was killing the cells. I find from the doc that tit's the infergen that does it; suppresses the bone marrow and far less blood is produced.Each time I think I are smart, I get wacked. lol That's teach me not to think I are smart, huh? lolSharonJackie

[Guest guest]

maybe he just misunderstood what you said,, its the Riba that eats the reds and INF that eats the whites,, I just think he misunderstood you,, thats all,, SHARON CROSBY <csharonxoxo@...> wrote: Yes, I had it in my head straight, but when doc said I was wrong, I believed him too. He's also an Oncologist, perhaps there's more in his head to make it relate the way he said it?? Sharon Re: Update Good sharon,, It will still take time to really feel "alot" better but you will be using more INF and Riba so it may just be a temporary bandaid,, but hopefully you will get the procrit and that should help to at least keep you from feeling WORSE... ya know ? Ribavrin causes the hemolytic anemia,, reduces the RBC's and

hemoglobin, take procrit for that,, then, , the Pegylated Interferon causes white cell anemia and you take neupogen for that... does that make better sense?,, sharon <csharonxoxomsn> wrote: Hello, Jackie, Liz and all those who offered support and advice for my low blood count plight.I went to the hematologist and he suggested that I get transfused, so that very day, I received 2 units of blood and am feeling some better. Still not good, but at least not so breathless and anaerobic.He suggested this because Medicare is now fussing about having to pay for the procrit class and neupogen class of drugs. Each case has to be pre-approved and that takes a couple of weeks, so this was the next best alternative.I'e also gotten some misconceptions in my Norsky

head. I thought that the ribaviran was the blood cell culprit - that it was killing the cells. I find from the doc that tit's the infergen that does it; suppresses the bone marrow and far less blood is produced.Each time I think I are smart, I get wacked. lol That's teach me not to think I are smart, huh? lolSharonJackie Jackie

[Guest guest]

Hi all,

YEs I agree its confusing which drug is causeing which

issue. LAst week my neutrophils were down to .058 and

the normal range is 1.96-7.23. This apparently is

white cells and caused by the Interferon - also Im

getting brusises all over my body - gross - they dont

stay long but appear out of nowhere. So they reduced

my peagasys injection to 135.

Theyve reduced my riba also because of very low

hemoglobin - i was breathless and had no energy. This

upset me (the recuction) as I know from all of you

NEVER reduce - treat the sides. But Im in a Vertex

trial and they want all patients treated the same. Im

into my 12 th week Monday and all they tell you is if

youre still in the trial you are responding.

So I feel for Sheena- not getting her sides treated

like me. You just can hardly walk thru a grocery store

aisle yet I ust moved to an new place and am going

thru a divorce. Dont call me crazy _ I already know I

am!

Love yas, Ann

________________________________________________________________________________\

___

You snooze, you lose. Get messages ASAP with AutoCheck

in the all-new Beta.

http://advision.webevents./mailbeta/newmail_html.html

[Guest guest]

Yeah, I thought I would have to stop treatment or crawl the rest of the way. I have just about got the house cleaned again, before this euphoria begins to fade. lol Sharon Re: Re: UpdateI feel like I have a new lease on life since my transfusion!! It matters less if medicare pays for procrit, now that I know there's an alternative.Sharon

[Guest guest]

Thats wonderful Sharon,,, you sound like you are feeling so much better! SHARON CROSBY <csharonxoxo@...> wrote: I feel like I have a new lease on life since my transfusion!! It matters less if medicare pays for procrit, now that I know there's an alternative. Sharon I remember being out of breath just walking to the bathroom

from the bed, or to the car, or even from the car into the docs office or lab,, its horrible,, but unfortunately it seems to be one of the sides that most of us have.. I sure wish they would find a real cure that does not involve INF.... ann <agann_01 > wrote: Jackie

[Guest guest]

Hi ann Well it does sound like you are hanging on,, and you are gonna make it hon,, we are all pulling for ya!ann <agann_01@...> wrote: Hi all,YEs I agree its confusing which drug is causeing whichissue. LAst week my neutrophils were down to .058 andthe normal range is 1.96-7.23. This apparently iswhite cells and caused by the Interferon - also Imgetting brusises all over my body - gross - they dontstay long but appear out of nowhere. So they reducedmy peagasys

injection to 135. Theyve reduced my riba also because of very lowhemoglobin - i was breathless and had no energy. Thisupset me (the recuction) as I know from all of youNEVER reduce - treat the sides. But Im in a Vertextrial and they want all patients treated the same. Iminto my 12 th week Monday and all they tell you is ifyoure still in the trial you are responding.So I feel for Sheena- not getting her sides treatedlike me. You just can hardly walk thru a grocery storeaisle yet I ust moved to an new place and am goingthru a divorce. Dont call me crazy _ I already know Iam! Love yas, Ann__________________________________________________________You snooze, you lose. Get messages ASAP with AutoCheckin the all-new Beta.http://advision.webevents./mailbeta/newmail_html.htmlJackie

[Guest guest]

Well, getting into a clean bed in a clean room was very enjoyable for me. I like my house clean. I've let it go in between spurts, so this is a treat for me. Re: Re: UpdateSharon,, I HAD to learn to let that go while on tx,, and I never was able to get it back either,, but I learned that a spotless house is not always a happy or healthy home... just pace yourself especially when on tx,, you dont want to use up all your energy doing things that are not very enjoyable,, SHARON CROSBY <csharonxoxo@...> wrote: What I really want to do is go out and work in my gardens, but guilt has kept me cleaning. I have 2 more corners in the living room to clean and I can go out and play. I'm done in tonight, but it's a good tired. My mother was fastidious, I keep seeing my house through her eyes and falling way short of the norm. lol SharonI hear ya lol Just don't over do it and tire yourself out . You should be savoring the energy lol ,

[Guest guest]

Oh I know,, clean sheets,, they feel so nice and when you feel so crummy, it can make the difference in sleep or not.. I love my house clean and we have a service that comes in twice a month to do all the heavy stuff as neither my husband nor myself can do those things anymore.. I start having bad nightmares when my bedroom is in disarray.. lol.. but we do try to keep things up and that makes it much better.. Im glad you felt better and were able to do this,, just try not to overdue so you dont get exhausted again.. its amazing just what a little bit of red blood cells can do for ya isnt it?!!! lol, Im glad you got this done and are feeling better.. SHARON CROSBY <csharonxoxo@...> wrote: Well, getting into a clean bed in a clean room was very enjoyable for me. I like my house clean. I've let it go in between spurts, so this is a treat for me. Re: Re: Update Sharon,, I HAD to learn to let that go while on tx,, and I never was able to get it back either,, but I learned that a spotless house is not always a happy or healthy home... just pace yourself especially when on tx,, you dont want to use up all your energy doing things that are not very enjoyable,, SHARON CROSBY <csharonxoxomsn> wrote: What I really want to do is go out and work in my gardens, but guilt has kept me cleaning. I have 2 more corners in the living room to clean and I can go out and play. I'm done in tonight, but it's a good tired. My mother was fastidious, I keep seeing

my house through her eyes and falling way short of the norm. lol Sharon I hear ya lol Just don't over do it and tire yourself out . You should be savoring the energy lol , Jackie

[Guest guest]

Jerry and Marissa,

Thanks so much for posting. You haven't posted in a while and I have been

wondering how Marissa was. I truly believe that we parents know our kids better

than anyone. I am sure if you notice a change for the good in Marissa's back,

than it must be getting better. The x-ray will be interesting. That is funny

about the the " frog " . I can just picture you and your wife telling her to do

the frog. She thinks it's fun, while you can get a good look at her back. I

should try that. Right now, I just make Cole bend over, even if he doesn't want

to. It is all about my obsession over his back and making sure it continues to

be straight on a daily basis.

As far as exercises. Great question. I don't know if there is a right or wrong

answer. So far, all the ortho. ped. surgeon we have seen, including Dr. Mehta at

the Chicago ettp, have said physical tx. is not necessary. But, I know so

parents have gotten their kids into it even though docs don't find it necessary.

Some kids are in swimming lessons to improve the muscle tone too. We currently

do not have Cole in any physical tx. He is Mr skinny boy and has NO fat or

muscle, so sometimes I worry. But, he has a twin brother that he plays with and

is active with all day. They lift toys, wrestle, run, play ball etc. I am hoping

these day to day activities will just naturally build muscle.

Maybe some other parents will chime in regarding therapy/exercises. Do they

really see a difference in muscle tone that goes beyond building it from day to

day activities? Swimming seems to me to be the best overall muscle builder.

Just my opinion.

Jerry, thanks for the update on little miss trooper Marissa. Keep us posted.

/Cole

jerryjerryimpala wrote:

Hope everyone is having a great summer. I wanted to give you all an

update on how the summer is going for Marissa in her brace. I

haven't been able to keep up with all of the posts but from what I've

seen, there's many kiddos in braces now, so it seems that many are

doing well. Congrats.

Since March, Marissa has really kept the brace on for what I consider

full time, just taking it off for bathing and swimming in her small

pool. Up until June or so, I really didn't see any difference in her

back, which has improved quite nicely with the casts. Her curve is a

lumbar, out of cast at 20, but had remained stable through three

casts, thus Dr. recommended bracing at this time. In brace,

it's down to 15. Around early July or so, I started noticing that

her curve seemed to be more centered, especially when bending

forward. I must admit, I'm the optimistic type, but there's

definitely some improvement with the rotation if not the cobb. When

she bends down, doing a frog we call it, her spine is very nice and

NO deformity or assymetry in her back. This is amazing as she always

had some rib hump.

When she goes to the potty, she bends forward and I see similar vast

improvement.

I know that I've been disappointed before, but her back does look

very much improved versus March. I so looked forward to bringing her

to the ETTP in Rochester. We were very disappointed in that she came

up with a fever the Sunday before and it still lingered on Tuesday.

Her doc suggested that it's best not to put her on a plane until she

got better. She also had an ear infection, too much swimming. I was

really looking forward to Ms. Mehta's thoughts on her status and

prognosis. aaaggghh.

Anyway, it seems as if she's getting better at least cosmetically

slowly but surely. Seeing there's so many starting the bracing, any

comments or observations would be greatly appreciated. The one thing

that my wife and I continue to struggle with is getting Marissa

muscle build up. We've not had Marissa go through any physical

therapy to build up her back muscles to help hold her spine. Has

anyone started this or thought about it?

We look forward to our appointment in October with Dr. . She

will be getting an in and out of brace x-ray. We'll then see how

it's really going. But for now, so far, so good.

Continue to have a great summer everyone,

Take care,

Jerry and Marissa

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

Building a website is a piece of cake.

Yahoo! Small Business gives you all the tools to get online.

[Guest guest]

Great update! It's always interesting to hear what happens in the end

of all this, since we're new to casting.

As for the muscles, we will without a doubt pursue physical therapy

for him after a year of being in a cast. It's terribly hard on the

muscles and in chiropractic care they always teach you that when your

back is out of alignment, the muscles support that and are used to it.

So, after an alignment at the chiro, the muscles try to pull the

spine back to the shape it was in before.

In fact, we're considering getting a referral for physical therapy

now, since Jack's mobility is so decreased in this first cast (and

asking for specific trims next time - like, we think it's way too low

on his hips and it digs into his thighs so he cannot crawl).

Best to you and your daughter,

Sandi ( & )

[Guest guest]

When Madison came out of her last cast she had PT 3x/week, swimming every day,

and gymnastics 2x/week. Her Drs feel like this is what attributed her to fast

muscle strength gain and her curve finally going down to zero. She still had

her brace on for 20 hours a day through this time though. Hope this helps and

congrats! I hope you all continue to see improvements.

jerryjerryimpala wrote: Hope everyone is

having a great summer. I wanted to give you all an

update on how the summer is going for Marissa in her brace. I

haven't been able to keep up with all of the posts but from what I've

seen, there's many kiddos in braces now, so it seems that many are

doing well. Congrats.

Since March, Marissa has really kept the brace on for what I consider

full time, just taking it off for bathing and swimming in her small

pool. Up until June or so, I really didn't see any difference in her

back, which has improved quite nicely with the casts. Her curve is a

lumbar, out of cast at 20, but had remained stable through three

casts, thus Dr. recommended bracing at this time. In brace,

it's down to 15. Around early July or so, I started noticing that

her curve seemed to be more centered, especially when bending

forward. I must admit, I'm the optimistic type, but there's

definitely some improvement with the rotation if not the cobb. When

she bends down, doing a frog we call it, her spine is very nice and

NO deformity or assymetry in her back. This is amazing as she always

had some rib hump.

When she goes to the potty, she bends forward and I see similar vast

improvement.

I know that I've been disappointed before, but her back does look

very much improved versus March. I so looked forward to bringing her

to the ETTP in Rochester. We were very disappointed in that she came

up with a fever the Sunday before and it still lingered on Tuesday.

Her doc suggested that it's best not to put her on a plane until she

got better. She also had an ear infection, too much swimming. I was

really looking forward to Ms. Mehta's thoughts on her status and

prognosis. aaaggghh.

Anyway, it seems as if she's getting better at least cosmetically

slowly but surely. Seeing there's so many starting the bracing, any

comments or observations would be greatly appreciated. The one thing

that my wife and I continue to struggle with is getting Marissa

muscle build up. We've not had Marissa go through any physical

therapy to build up her back muscles to help hold her spine. Has

anyone started this or thought about it?

We look forward to our appointment in October with Dr. . She

will be getting an in and out of brace x-ray. We'll then see how

it's really going. But for now, so far, so good.

Continue to have a great summer everyone,

Take care,

Jerry and Marissa

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

Boardwalk for $500? In 2007? Ha!

Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games.

[Guest guest]

Hi BJ, I am glad you got to go on vacation. We went to Ohio to see my

parents. It was a blessing to spend time with my dad, but he is very

frail and it was hard seeing him in his present condition. He is on a

feeding tube now. Bre had alot of anxiety there too.

She has had her first behind the wheel and now has her drivers

permit. When she drives with me she constantly asks me, am I too far

over, should I turn on my signal now, am I going too fast, am I going

too slow. I finally stopped anwswering when I realized it was ocd

reassurance seeking!! (She thought I was mad at her.) I told her she

had to learn to drive as if no one where in the car. So far, no going

back and checking when she goes over a bump to see if she hit someone!

Anyways I know exactly how you feel! Does Josh have his permit yet?

I finally got a parent support group going and Bre may be leading a

teen support group. There were 4 teenagers at the last meeting so Bre

wants to breakaway from the adults and lead it. I said, You go girl!!!

School is in full swing now and life goes on. I just pray each day

there are no MAJOR issues!!

Sandy

-- In , " svdbyhislove " <BJClosner@...>

wrote:

>

> Hi, Everyone. For those who know me and have noticed I've been

> somewhat absent. . .I've not left, I've just been lurking somewhat

> because it's canning season and I've had my hands very full canning

> green beans, dilly beans, salsa, pickles, etc. I've been popping in

> once a day trying to keep up, but not always having time to reply.

>

> We actually took some time off and took a small vacation. We went

to

> my in-laws beach house and took Josh's best friend with us. I

worried

> about how hard it was going to be for him to try to keep it all

under

> control in front of his friend, especially with him being sleep

> deprived, but he did well. I expected a meltdown when we got back,

> but he has been okay. . Or at least he hasn't mentioned anything. I

> try not to ask. It just seems to make him focus on it. They were

> able to go boating, swimming, and dig clams. It was nice to have

what

> felt like a normal vacation.

>

> So, we are doing well enough, but as we all know, it is never truly

> gone, just sleeping. Josh starts driver's ed this Tuesday and I'm

> hoping it goes well. You never know what the OCD monster will throw

> at our kids at times. I would hate for him to have problems in a

car

> with other kids present. We are hoping for the best.

>

> how is Stephan doing? How is his therapy going? Are you

still

> trying the 5HTP?

>

> , how is Noah doing now that he's home? Did you find a good

> therapist?

>

> ((((Barb)))) My thoughts and prayers are with you. I hope things

have

> settled down some at home.

>

> LT, you've been quiet. I hope that means things are going well.

>

> You are all in my thoughts and prayers. This group has been a

> blessing for us.

>

> BJ

>

[Guest guest]

Hi BJ, so glad you all had a regular vacation!! I also tend to pop

in more to try to keep up and also don't have time for replies some

days.

's has his OK days and then really bad days. More bad than

good. We've dropped the 5HTP and are trying, again, inositol

powder. He's taking (supposed to be) the 18 grams/day. I just got

him some more, 2 bottles the same brand we've always used and then a

bottle of another brand. Thought a switch might help. The new brand

isn't quite as strong, per tsp, as our's but thought we'd try it

anyway. I know when I mention how sometimes he just lies on his bed,

upset by his thoughts, etc., you know what I mean since your Josh

dealt with thoughts too. I've told that if this doesn't

work, then I'm calling the doctor. He's managed okay in college, I

had to read some of his sociology to him twice.

I'm glad Josh is doing soooooo much better!

>

> Hi, Everyone. For those who know me and have noticed I've been

> somewhat absent. . .I've not left, I've just been lurking somewhat

> because it's canning season and I've had my hands very full canning

> green beans, dilly beans, salsa, pickles, etc. I've been popping in

> once a day trying to keep up, but not always having time to reply.

>

> We actually took some time off and took a small vacation. We went

[Guest guest]

--- svdbyhislove <BJClosner@...> wrote:

>>

> , how is Noah doing now that he's home? Did you

> find a good

> therapist?

>

>Welcome back, B.J. Sounds like you had a great end of

summer. Best of luck to Josh in driver's ed.

Noah is doing very well. He has made it through the

first week of school without incident. Although he has

a " time out " signal for his teachers, he hasn't used

it once, although he almost did once, but managed

without it.

Last night and today he actually picked up a piece of

food without using a napkin!!! That's a first in

months! It was the same food both times, and part of

our religious practice, and it didn't keep him from

using a barrier for his other food. But I see it as a

great victory. It's the stuff that keeps us going,

right?

Anyway, we have found a fine therapist who is very

experienced in ERP with adults. He said he'd never

done it with a kid, but was willing to give it a shot

and had two time slots a week for Noah. It's working

out great. Meanwhile, we're still on the wait list for

intensive (2 hours/5xweek)therapy an our anxiety

center. Every few weeks I'm told the wait would be 2-3

weeks. Oh well...Just happy to maintain the gains Noah

made at residential.

Good luck with your driving.

________________________________________________________________________________\

____

Pinpoint customers who are looking for what you sell.

http://searchmarketing./

[Guest guest]

--- svdbyhislove <BJClosner@...> wrote:

>>

> , how is Noah doing now that he's home? Did you

> find a good

> therapist?

>

>Welcome back, B.J. Sounds like you had a great end of

summer. Best of luck to Josh in driver's ed.

Noah is doing very well. He has made it through the

first week of school without incident. Although he has

a " time out " signal for his teachers, he hasn't used

it once, although he almost did once, but managed

without it.

Last night and today he actually picked up a piece of

food without using a napkin!!! That's a first in

months! It was the same food both times, and part of

our religious practice, and it didn't keep him from

using a barrier for his other food. But I see it as a

great victory. It's the stuff that keeps us going,

right?

Anyway, we have found a fine therapist who is very

experienced in ERP with adults. He said he'd never

done it with a kid, but was willing to give it a shot

and had two time slots a week for Noah. It's working

out great. Meanwhile, we're still on the wait list for

intensive (2 hours/5xweek)therapy an our anxiety

center. Every few weeks I'm told the wait would be 2-3

weeks. Oh well...Just happy to maintain the gains Noah

made at residential.

Good luck with your driving.

________________________________________________________________________________\

____

Pinpoint customers who are looking for what you sell.

http://searchmarketing./

[Guest guest]

Hi BJ!

Wish you lived close by I'd come over for some nachos and salsa and

would love some dill pickles! You've been busy!

So glad you were able to have what felt like a " normal " vacation. A

very great accomplishment indeed! Happy for you and for Josh.

Also relate to your comment that the OCD is never really gone, just

sleeping... I find I am getting quite adept at pretending it doesn't

exist if I don't see it. Of course it is never far from my thoughts

when I go to sleep or when I wake up, and I have to consciously

choose to not let it be THE FOCUS...

Thanks for asking about . We are not without 'incident' in

the past few weeks, not physical this time, but I'll leave it

at 'other'. While concerning, I feel like we have a reasonably good

handle on things, in terms of it being mostly ocd with some " other "

ie probably bipolar tendencies thrown in.

We have a contract for behavior and acceptable conduct in general.

Our son has a clear understanding, knowing the alternatives, and

wants to stay at home, as do we, so this seems to be helping us

maintain a tight reign. It would seem that what he feels powerless to

boss back with the OCD, he is relieved to have us boss back - a real

revelation for us. It is a learning curve to be sure...

We have added some Chinese herbs to help with the aggression and both

and we find it has made a big difference. He " feels " more

able to contain stuff. Can only hope it continues to help.

Sorry this got long! Thanks again for checking in and happy to hear

things are going better in your house. Good luck to Josh for

driver's ed!

Hugs!

Barb

>

> Hi, Everyone. For those who know me and have noticed I've been

> somewhat absent. . .I've not left, I've just been lurking somewhat

> because it's canning season and I've had my hands very full canning

> green beans, dilly beans, salsa, pickles, etc. I've been popping in

> once a day trying to keep up, but not always having time to reply.

>

> We actually took some time off and took a small vacation. We went

to

> my in-laws beach house and took Josh's best friend with us. I

worried

> about how hard it was going to be for him to try to keep it all

under

> control in front of his friend, especially with him being sleep

> deprived, but he did well. I expected a meltdown when we got back,

> but he has been okay. . Or at least he hasn't mentioned anything. I

> try not to ask. It just seems to make him focus on it. They were

> able to go boating, swimming, and dig clams. It was nice to have

what

> felt like a normal vacation.

>

> So, we are doing well enough, but as we all know, it is never truly

> gone, just sleeping. Josh starts driver's ed this Tuesday and I'm

> hoping it goes well. You never know what the OCD monster will throw

> at our kids at times. I would hate for him to have problems in a

car

> with other kids present. We are hoping for the best.

>

> how is Stephan doing? How is his therapy going? Are you

still

> trying the 5HTP?

>

> , how is Noah doing now that he's home? Did you find a good

> therapist?

>

> ((((Barb)))) My thoughts and prayers are with you. I hope things

have

> settled down some at home.

>

> LT, you've been quiet. I hope that means things are going well.

>

> You are all in my thoughts and prayers. This group has been a

> blessing for us.

>

> BJ

>

[Guest guest]

> >

> > Hi, Everyone. For those who know me and have noticed I've been

> > somewhat absent. . .I've not left, I've just been lurking somewhat

> > because it's canning season and I've had my hands very full canning

> > green beans, dilly beans, salsa, pickles, etc. I've been popping in

> > once a day trying to keep up, but not always having time to reply.

> >

> > We actually took some time off and took a small vacation. We went

> to

> > my in-laws beach house and took Josh's best friend with us. I

> worried

> > about how hard it was going to be for him to try to keep it all

> under

> > control in front of his friend, especially with him being sleep

> > deprived, but he did well. I expected a meltdown when we got back,

> > but he has been okay. . Or at least he hasn't mentioned anything. I

> > try not to ask. It just seems to make him focus on it. They were

> > able to go boating, swimming, and dig clams. It was nice to have

> what

> > felt like a normal vacation.

> >

> > So, we are doing well enough, but as we all know, it is never truly

> > gone, just sleeping. Josh starts driver's ed this Tuesday and I'm

> > hoping it goes well. You never know what the OCD monster will throw

> > at our kids at times. I would hate for him to have problems in a

> car

> > with other kids present. We are hoping for the best.

> >

> > how is Stephan doing? How is his therapy going? Are you

> still

> > trying the 5HTP?

> >

> > , how is Noah doing now that he's home? Did you find a good

> > therapist?

> >

> > ((((Barb)))) My thoughts and prayers are with you. I hope things

> have

> > settled down some at home.

> >

> > LT, you've been quiet. I hope that means things are going well.

> >

> > You are all in my thoughts and prayers. This group has been a

> > blessing for us.

> >

> > BJ

> >

>

[Guest guest]

I hope the Inositol works for him again. He really needs some

relief, and so do you. My sister just started my nephew on it, who

also has OCD, but he is not responding yet. He also is medication

resistant, but something has to work soon because he is also in

college and needs to function (as I'm sure you understand). Thank you

for the update. It's good to hear from you.

Hugs,

BJ

> >

> > Hi, Everyone. For those who know me and have noticed I've been

> > somewhat absent. . .I've not left, I've just been lurking somewhat

> > because it's canning season and I've had my hands very full canning

> > green beans, dilly beans, salsa, pickles, etc. I've been popping in

> > once a day trying to keep up, but not always having time to reply.

> >

> > We actually took some time off and took a small vacation. We went

>

[Guest guest]

I hope the Inositol works for him again. He really needs some

relief, and so do you. My sister just started my nephew on it, who

also has OCD, but he is not responding yet. He also is medication

resistant, but something has to work soon because he is also in

college and needs to function (as I'm sure you understand). Thank you

for the update. It's good to hear from you.

Hugs,

BJ

> >

> > Hi, Everyone. For those who know me and have noticed I've been

> > somewhat absent. . .I've not left, I've just been lurking somewhat

> > because it's canning season and I've had my hands very full canning

> > green beans, dilly beans, salsa, pickles, etc. I've been popping in

> > once a day trying to keep up, but not always having time to reply.

> >

> > We actually took some time off and took a small vacation. We went

>

[Guest guest]

, that is great news about the doc taking you. I hope he keeps

Noah focused until you can get the intensive treatment. He is such a

brave guy. Good for him for working through it at school and not

needing to use his signal. Our kids struggle so much harder than the

average person. That takes such courage. I'm glad to hear he is

continuing to do well. )

Hugs,

BJ

>

> >>

> > , how is Noah doing now that he's home? Did you

> > find a good

> > therapist?

> >

> >Welcome back, B.J. Sounds like you had a great end of

> summer. Best of luck to Josh in driver's ed.

>

> Noah is doing very well. He has made it through the

> first week of school without incident. Although he has

> a " time out " signal for his teachers, he hasn't used

> it once, although he almost did once, but managed

> without it.

> Last night and today he actually picked up a piece of

> food without using a napkin!!! That's a first in

> months! It was the same food both times, and part of

> our religious practice, and it didn't keep him from

> using a barrier for his other food. But I see it as a

> great victory. It's the stuff that keeps us going,

> right?

> Anyway, we have found a fine therapist who is very

> experienced in ERP with adults. He said he'd never

> done it with a kid, but was willing to give it a shot

> and had two time slots a week for Noah. It's working

> out great. Meanwhile, we're still on the wait list for

> intensive (2 hours/5xweek)therapy an our anxiety

> center. Every few weeks I'm told the wait would be 2-3

> weeks. Oh well...Just happy to maintain the gains Noah

> made at residential.

>

> Good luck with your driving.

>

>

>

>

>

>

________________________________________________________________________________\

____

> Pinpoint customers who are looking for what you sell.

> http://searchmarketing./

>

[Guest guest]

It would be fun to have a get together, wouldn't it. ) Although,

my house reeks of vinegar right now. lol (all the canning)

I'm so glad to hear things have stabalized, for now. I hope it

continues to improve for you all.

Josh also has trouble bossing back the OCD, like your . He

said it's schizophrenic to talk to yourself. Hmmmmm. I told him no,

it's schizophrenic if you hear other people talking to you that aren't

there. He just gave me a look. He is doing the exposures with no

problem, the the CBT is shaky. I think he feels it's silly.

Anyhow, your reply wasn't long at all, and I'm glad to hear from you.

)

Hugs back,

BJ

> >

> > Hi, Everyone. For those who know me and have noticed I've been

> > somewhat absent. . .I've not left, I've just been lurking somewhat

> > because it's canning season and I've had my hands very full canning

> > green beans, dilly beans, salsa, pickles, etc. I've been popping in

> > once a day trying to keep up, but not always having time to reply.

> >

> > We actually took some time off and took a small vacation. We went

> to

> > my in-laws beach house and took Josh's best friend with us. I

> worried

> > about how hard it was going to be for him to try to keep it all

> under

> > control in front of his friend, especially with him being sleep

> > deprived, but he did well. I expected a meltdown when we got back,

> > but he has been okay. . Or at least he hasn't mentioned anything. I

> > try not to ask. It just seems to make him focus on it. They were

> > able to go boating, swimming, and dig clams. It was nice to have

> what

> > felt like a normal vacation.

> >

> > So, we are doing well enough, but as we all know, it is never truly

> > gone, just sleeping. Josh starts driver's ed this Tuesday and I'm

> > hoping it goes well. You never know what the OCD monster will throw

> > at our kids at times. I would hate for him to have problems in a

> car

> > with other kids present. We are hoping for the best.

> >

> > how is Stephan doing? How is his therapy going? Are you

> still

> > trying the 5HTP?

> >

> > , how is Noah doing now that he's home? Did you find a good

> > therapist?

> >

> > ((((Barb)))) My thoughts and prayers are with you. I hope things

> have

> > settled down some at home.

> >

> > LT, you've been quiet. I hope that means things are going well.

> >

> > You are all in my thoughts and prayers. This group has been a

> > blessing for us.

> >

> > BJ

> >

>

[Guest guest]

It would be fun to have a get together, wouldn't it. ) Although,

my house reeks of vinegar right now. lol (all the canning)

I'm so glad to hear things have stabalized, for now. I hope it

continues to improve for you all.

Josh also has trouble bossing back the OCD, like your . He

said it's schizophrenic to talk to yourself. Hmmmmm. I told him no,

it's schizophrenic if you hear other people talking to you that aren't

there. He just gave me a look. He is doing the exposures with no

problem, the the CBT is shaky. I think he feels it's silly.

Anyhow, your reply wasn't long at all, and I'm glad to hear from you.

)

Hugs back,

BJ

> >

> > Hi, Everyone. For those who know me and have noticed I've been

> > somewhat absent. . .I've not left, I've just been lurking somewhat

> > because it's canning season and I've had my hands very full canning

> > green beans, dilly beans, salsa, pickles, etc. I've been popping in

> > once a day trying to keep up, but not always having time to reply.

> >

> > We actually took some time off and took a small vacation. We went

> to

> > my in-laws beach house and took Josh's best friend with us. I

> worried

> > about how hard it was going to be for him to try to keep it all

> under

> > control in front of his friend, especially with him being sleep

> > deprived, but he did well. I expected a meltdown when we got back,

> > but he has been okay. . Or at least he hasn't mentioned anything. I

> > try not to ask. It just seems to make him focus on it. They were

> > able to go boating, swimming, and dig clams. It was nice to have

> what

> > felt like a normal vacation.

> >

> > So, we are doing well enough, but as we all know, it is never truly

> > gone, just sleeping. Josh starts driver's ed this Tuesday and I'm

> > hoping it goes well. You never know what the OCD monster will throw

> > at our kids at times. I would hate for him to have problems in a

> car

> > with other kids present. We are hoping for the best.

> >

> > how is Stephan doing? How is his therapy going? Are you

> still

> > trying the 5HTP?

> >

> > , how is Noah doing now that he's home? Did you find a good

> > therapist?

> >

> > ((((Barb)))) My thoughts and prayers are with you. I hope things

> have

> > settled down some at home.

> >

> > LT, you've been quiet. I hope that means things are going well.

> >

> > You are all in my thoughts and prayers. This group has been a

> > blessing for us.

> >

> > BJ

> >

>

[Guest guest]

It is great to get an update on how our kids are doing with the school year

starting up. I am so glad to hear that Noah is doing so well and that Josh had a

good family vacation. I hope will get a break from his bad

thoughts soon. That is so distressing, but it is good news that he seems to be

handling college well so far. Thanks for all the updates. I am behind in my

emails, so I haven't gotten to them all yet.

One year after leaving my son 'O' (16) is doing really well. The summer

was a wonderful break from stress for him. Last year he struggled through school

because of social anxiety in addition to his OCD. Over the summer his social

anxiety seemed to ease and he really enjoyed his free time. We were dreading the

new school year but he has really surprised us so far ! He has been getting up

on time, showering (this is a big one for him!) and getting to school early. He

is very enthusiastic about his first class (TV production) so that has helped.

He has also been reconnecting with kids he knows from previous classes and

generally throwing himself into school life. At the weekends he has been

organizing get togethers with another bunch of friends he had just about lost

contact with. It is so great to see him enjoy life so much. Lately he told us

that when he is focused and interested in his hobbies or with friends there is

no room for the OCD and that

it only really bothers him when he is bored (that can be a problem at school!).

We are keeping our fingers crossed that this is not a temporary waning of the

OCD and are hoping that he can maintain it. The OCD is definitely there in the

background. Just yesterday, a friend going on (and on!) about black widow

spiders nearly set him back, but I think he got through it OK. At least he was

able to talk about it with me and we did some 'thought challenging' on the

topic.

I hope all our kids have an easier time this school year.

Sinead

Re: Update

--- svdbyhislove <BJClosnercomcast (DOT) net> wrote:

>>

> , how is Noah doing now that he's home? Did you

> find a good

> therapist?

>

>Welcome back, B.J. Sounds like you had a great end of

summer. Best of luck to Josh in driver's ed.

Noah is doing very well. He has made it through the

first week of school without incident. Although he has

a " time out " signal for his teachers, he hasn't used

it once, although he almost did once, but managed

without it.

Last night and today he actually picked up a piece of

food without using a napkin!!! That's a first in

months! It was the same food both times, and part of

our religious practice, and it didn't keep him from

using a barrier for his other food. But I see it as a

great victory. It's the stuff that keeps us going,

right?

Anyway, we have found a fine therapist who is very

experienced in ERP with adults. He said he'd never

done it with a kid, but was willing to give it a shot

and had two time slots a week for Noah. It's working

out great. Meanwhile, we're still on the wait list for

intensive (2 hours/5xweek) therapy an our anxiety

center. Every few weeks I'm told the wait would be 2-3

weeks. Oh well...Just happy to maintain the gains Noah

made at residential.

Good luck with your driving.

____________ _________ _________ _________ _________ _________ _

Pinpoint customers who are looking for what you sell.

http://searchmarket ing.. com/

________________________________________________________________________________\

____

Looking for a deal? Find great prices on flights and hotels with

FareChase.

http://farechase./

[Guest guest]

Sinead, that is great that he doing better this year with school. We

homeschool and haven't started yet. I'm going to give him a week of

Driver's Ed before we throw more school work into his life, just to

try to ease in. My son and my nephew (also OCD) both do better if

they can stay busy too. The problem is, it is hard to keep them busy

enough. I think in a way, it is an avoidance tactic, but I feel they

deserve a break from OCD occasionally since they have to fight it so

much the rest of the time. So however they can avoid, occasionally,

and try to live a normal life should be allowed.

Sometimes when people are going on and on about stuff that I know is

freaking Josh out, I just want to go over and duct tape their mouths

shut. Husband included. lol

BJ

>

> >>

> > , how is Noah doing now that he's home? Did you

> > find a good

> > therapist?

> >

> >Welcome back, B.J. Sounds like you had a great end of

> summer. Best of luck to Josh in driver's ed.

>

> Noah is doing very well. He has made it through the

> first week of school without incident. Although he has

> a " time out " signal for his teachers, he hasn't used

> it once, although he almost did once, but managed

> without it.

> Last night and today he actually picked up a piece of

> food without using a napkin!!! That's a first in

> months! It was the same food both times, and part of

> our religious practice, and it didn't keep him from

> using a barrier for his other food. But I see it as a

> great victory. It's the stuff that keeps us going,

> right?

> Anyway, we have found a fine therapist who is very

> experienced in ERP with adults. He said he'd never

> done it with a kid, but was willing to give it a shot

> and had two time slots a week for Noah. It's working

> out great. Meanwhile, we're still on the wait list for

> intensive (2 hours/5xweek) therapy an our anxiety

> center. Every few weeks I'm told the wait would be 2-3

> weeks. Oh well...Just happy to maintain the gains Noah

> made at residential.

>

> Good luck with your driving.

>

>

>

> ____________ _________ _________ _________ _________ _________ _

> Pinpoint customers who are looking for what you sell.

> http://searchmarket ing.. com/

>

>

>

>

>

>

________________________________________________________________________________\

____

> Looking for a deal? Find great prices on flights and hotels with

FareChase.

> http://farechase./

>

>