Update on

[Guest guest]

Dear Marlys,

You are doing just GREAT!!! It all sounds so familiar to me - the

telling the teachers who don't really believe you until you bring in the

words " doctor " , " psychiatrist " " diagnosis " , etc. In my experience that has

made all the difference in the world. Also the part about daydreaming and not

paying attention... we have been dealing with that all fall. My daughter

spends a huge amount of energy trying to appear normal, as all OCD kids do,

and her teacher thinks she is being deliberately disobedient and/or ADDish.

It's so hard. It sounds to me as if that teacher will try harder now - I hope

so.

One thing I have come to realize is just how little teachers know

about anything other than " normal " behavior. I have always assumed they would

be a bit more knowledgable. I have recently learned that in our state,

teachers have one course on special ed which consists of one chapter in a

book - giftedness is covered in a couple of SENTENCES and they learn nothing

about kids with problems like OCD. Not even where to go for further

information. Geez. I doubt that any state is quite as lame as Nevada in this

respect, but it does explain why they just seem so dim sometimes!! I've been

fighting this battle about giftedness forever (if she qualifies for gifted

education, why doesn't she get straight A's and do everything perfectly??)

and I expect the OCD battles will just get worse as time goes on.

Hang in there - you''ll get more courageous as time goes on!!

[Guest guest]

,

Thank you for your reply. It does help me become more courageous to

hear from others who have also " fought the school battle " . Sometimes

I have to hear it over and over and over... :-)

It baffles me too why school personnel can't understand that a

very bright student couldn't also have OCD/TS... would they think a

gifted student couldn't have diabetes or asthma?

It's weird, but I guess there is a different stigma to OCD, so I am

starting to educate anyone who will listen. Already, my co-workers

are avoiding me... think anyone in my extended family will talk to me

at Thanksgiving? :-) Just kidding. Actually, most people are

well-meaning, just ignorant, as I was.

Marlys

> Dear Marlys,

> You are doing just GREAT!!! It all sounds so familiar to me -

the

> telling the teachers who don't really believe you until you bring in

the

> words " doctor " , " psychiatrist " " diagnosis " , etc. In my experience

that has

> made all the difference in the world. Also the part about

daydreaming and not

> paying attention... we have been dealing with that all fall. My

daughter

> spends a huge amount of energy trying to appear normal, as all OCD

kids do,

> and her teacher thinks she is being deliberately disobedient and/or

ADDish.

> It's so hard. It sounds to me as if that teacher will try harder now

- I hope

> so.

> One thing I have come to realize is just how little teachers

know

> about anything other than " normal " behavior. I have always assumed

they would

> be a bit more knowledgable. I have recently learned that in our

state,

> teachers have one course on special ed which consists of one chapter

in a

> book - giftedness is covered in a couple of SENTENCES and they

learn nothing

> about kids with problems like OCD. Not even where to go for further

> information. Geez. I doubt that any state is quite as lame as Nevada

in this

> respect, but it does explain why they just seem so dim sometimes!!

I've been

> fighting this battle about giftedness forever (if she qualifies for

gifted

> education, why doesn't she get straight A's and do everything

perfectly??)

> and I expect the OCD battles will just get worse as time goes on.

> Hang in there - you''ll get more courageous as time goes on!!

>

>

>

>

[Guest guest]

Wow, ls! Even though you asked for suggests/comments, I can't

find ONE thing in this post to suggest that you need 'help' or didn't

go in with a MISSION - and accomplished it! You're doing just

fine!! And of course you did the right thing. used to tell

me all the time NOT to talk to his teachers (in high school) but I'm

glad I did. It made ALL the difference. When teachers know that

there is a parent paying CLOSE attention to their child's performance

in school, they suddenly change.

Good for you and keep up the good work! Your courage has reminded me

of my favorite quote (below).

Joni

" Courage is not the absense of fear.

It's the making of action in SPITE of fear.

The moving out against the resistance engendered by fear,

into the unknown...

and into the future. "

M. Peck (from 'The Road Less Traveled')

> ........Anyway, this may backfire, and that is why didn't

want me to

> talk to him (might make it worse), but I thought if I were the

> teacher, I would want to know. He did ask to call me back in a

week,

> which indicates to me that he is willing to change his behavior and

> work with us on this... I pray a lot...

> Comments anyone... did I do the right thing?>

>

> Thanks for any help/suggestions/encouragement...

> Marlys in SC

[Guest guest]

Joni,

Thanks for your encouragement. I really need it cuz this was HARD

for me. Even though it went pretty well, I cried for a

while afterward... all this emotion in me... has to go somewhere.

Anyway, I don't know if you had posted it recently or if I saw the

quote on " courage " somewhere else... but it's a great one for me, and

was actually one of the things (along with the serenity prayer) that

spurred me to action. So, thanks!

That makes sense also about the teacher being more careful if he knows

a parent is keeping close tabs on the situation. I will find out

tonight what he said to in class today... hope it went ok.

Marlys

>

> > ........Anyway, this may backfire, and that is why didn't

> want me to

> > talk to him (might make it worse), but I thought if I were the

> > teacher, I would want to know. He did ask to call me back in a

> week,

> > which indicates to me that he is willing to change his behavior

and

> > work with us on this... I pray a lot...

> > Comments anyone... did I do the right thing?>

> >

> > Thanks for any help/suggestions/encouragement...

> > Marlys in SC

[Guest guest]

Hi Marlys, I'm glad the teacher is coming around. I, too, had to

learn to be more outspoken. Now my kids, especially my 16 y/o, fear

what I'll say to anyone! At school meetings though, I basically

don't do well when I meet resistance; e.g., having to show

how he arrived at his math answer - he does a lot of math in his head

and sometimes can't really write it down how he got it; I wanted this

requirement removed for him but the math teacher won out - he has to

show his work. But most everything else worked out great!

You're doing great and I'm sure the teacher will work with you both

now. I agree with about the social skills bit. Like you said,

it's amazing what an official diagnosis can do regarding school

issues! Have everything you want to talk about written down so you

can refer to it (or depending on how you write it up, you could give

a copy to each person at the meeting); have written down exactly what

you want from the school regarding class; e.g., sitting at the front

of the class to cut down on distractions, things like that.

It's hard too, when the school sees them making A's so doesn't see

the reason for a 504/IEP. Will go to the meeting too?

Apparently all her other teachers or classes are no problem for her

but this should set everything up for the upcoming years!

You probably have some/these, but here's a couple sites that might

help re the education part, things you could print out and highlight:

http://www.tourettesyndrome.net/education.htm

This site has OCD education/school stuff too.

http://www.schoolpsychology.net/

Good luck and keep us all posted!!

> Hi all!

> I haven't posted for a while and want update you, ask for

> encouragement, and welcome the newcomers to the list - welcome!! I

am

> Marlys in SC, solitary parent to , 16-yo in the 10th grade

with

> Tourette's, OCD, and sensory sensitivities.

>

> I can't remember when I last wrote, but school is the toughest part

of

> 's life, particularly her Biology teacher/class. Yesterday,

> when she was watching a nature movie (which she likes), she was

> shielding her eyes from nervous movements that are triggers for her

> tics/compulsions. The teacher told her not to do this, and

threatened

> her with ISS. (These situations have been ongoing and

escalating.)

> was so frustrated that she did everything in her power to

not

> blurt out something to him, and just glared at him. When she told

me

> about this, she seemed about to explode - literally. Well, I told

her

> this was unfair, and that it was beyond what she could deal with by

> herself, and that I would talk to him (again). I had talked to him

at

> the beginning of the semester, explaining her nbd's, triggers,

etc.,

> and it didn't seem to help. He is skeptical of giving her " special "

> treatment, cuz she gets A's - sheesh!

>

> Well, in the past weeks I have been in contact with the

psychiatrist

> from last year, got a letter of diagnosis from her, including

> recommendations for school accomodations. I am now awaiting a call

> back from the school counselor. I plan to meet with her, and

request

> a 504. ( I really don't know what I'm doing... but need to learn

to

> be a better advocate for . Courage is not my strong suit...

so

> you guys are a lot of help.)

>

> OK, so I spoke with the Biology teacher this morning. There are a

lot

> of weird things about him personally, and I think he's barely a

> mediocre teacher, probably burned-out, has poor social skills, BUT

I

> don't think he is a bad or cruel person... or at least I hope not.

I

> asked for his take on yesterday, and he said that day-

dreams a

> lot (this from a kid who expends a tremendous amount of energy each

> day to try to LOOK normal), and that she refused to watch the

film! I

> explained that even though that was how it LOOKED to him, that this

is

> not at all what was really going on with her. I told him that I

now

> had the doctor's diagnosis, and wow! - what a difference that makes

> over a lowly MOM saying her child has nbd's. So, now he starts

> apologizing, and saying he will apologize to her in case if he hurt

> her feelings, NOW THAT HE KNOWS... well why did I bother talking to

> him in August?!? (He again brought up that she is doing well -

> getting a 97 - that's not the point... I'm concerned about her

sanity,

> safety, health!!! what good will an A do her if she kills

herself?)

> Anyway, this may backfire, and that is why didn't want me

to

> talk to him (might make it worse), but I thought if I were the

> teacher, I would want to know. He did ask to call me back in a

week,

> which indicates to me that he is willing to change his behavior and

> work with us on this... I pray a lot...

> Comments anyone... did I do the right thing?

>

> Also, even though the psychiatrist didn't know any therapists

(nearby)

> experienced in treating OCD, I started calling around and am

meeting

> with one soon who sounds promising... I don't know if I can talk

> into therapy, but I thought I'd at least meet with her, and

go

> from there.

>

> Thanks for any help/suggestions/encouragement...

> Marlys in SC

[Guest guest]

Hi at least you can be with the family , my girl and i have to be away from the

family due to my daughters problem, its wierd ive never been away from the

family on holidays Patty in calif, bye

Re: update on

,

Thank you for your reply. It does help me become more courageous to

hear from others who have also " fought the school battle " . Sometimes

I have to hear it over and over and over... :-)

It baffles me too why school personnel can't understand that a

very bright student couldn't also have OCD/TS... would they think a

gifted student couldn't have diabetes or asthma?

It's weird, but I guess there is a different stigma to OCD, so I am

starting to educate anyone who will listen. Already, my co-workers

are avoiding me... think anyone in my extended family will talk to me

at Thanksgiving? :-) Just kidding. Actually, most people are

well-meaning, just ignorant, as I was.

Marlys

> Dear Marlys,

> You are doing just GREAT!!! It all sounds so familiar to me -

the

> telling the teachers who don't really believe you until you bring in

the

> words " doctor " , " psychiatrist " " diagnosis " , etc. In my experience

that has

> made all the difference in the world. Also the part about

daydreaming and not

> paying attention... we have been dealing with that all fall. My

daughter

> spends a huge amount of energy trying to appear normal, as all OCD

kids do,

> and her teacher thinks she is being deliberately disobedient and/or

ADDish.

> It's so hard. It sounds to me as if that teacher will try harder now

- I hope

> so.

> One thing I have come to realize is just how little teachers

know

> about anything other than " normal " behavior. I have always assumed

they would

> be a bit more knowledgable. I have recently learned that in our

state,

> teachers have one course on special ed which consists of one chapter

in a

> book - giftedness is covered in a couple of SENTENCES and they

learn nothing

> about kids with problems like OCD. Not even where to go for further

> information. Geez. I doubt that any state is quite as lame as Nevada

in this

> respect, but it does explain why they just seem so dim sometimes!!

I've been

> fighting this battle about giftedness forever (if she qualifies for

gifted

> education, why doesn't she get straight A's and do everything

perfectly??)

> and I expect the OCD battles will just get worse as time goes on.

> Hang in there - you''ll get more courageous as time goes on!!

>

>

>

>

[Guest guest]

In a message dated 10/26/01 4:55:50 PM Pacific Daylight Time,

pattymanzanares@... writes:

> Hi at least you can be with the family , my girl and i have to be away from

> the family due to my daughters problem

Stay Strong Patty, Your not alone.

Jana

[Guest guest]

Dear jana thats my problem now im not strong i have so many other concrns in my

life to deal with, i dont know where to turn to first,, thanks your sweet Jana

patty in calif,

Re: Re: update on

In a message dated 10/26/01 4:55:50 PM Pacific Daylight Time,

pattymanzanares@... writes:

> Hi at least you can be with the family , my girl and i have to be away from

> the family due to my daughters problem

Stay Strong Patty, Your not alone.

Jana

[Guest guest]

what is a 504 plan, please reply patty in calif, pattymanzanares@...

update on

Hi all!

I haven't posted for a while and want update you, ask for

encouragement, and welcome the newcomers to the list - welcome!! I am

Marlys in SC, solitary parent to , 16-yo in the 10th grade with

Tourette's, OCD, and sensory sensitivities.

I can't remember when I last wrote, but school is the toughest part of

's life, particularly her Biology teacher/class. Yesterday,

when she was watching a nature movie (which she likes), she was

shielding her eyes from nervous movements that are triggers for her

tics/compulsions. The teacher told her not to do this, and threatened

her with ISS. (These situations have been ongoing and escalating.)

was so frustrated that she did everything in her power to not

blurt out something to him, and just glared at him. When she told me

about this, she seemed about to explode - literally. Well, I told her

this was unfair, and that it was beyond what she could deal with by

herself, and that I would talk to him (again). I had talked to him at

the beginning of the semester, explaining her nbd's, triggers, etc.,

and it didn't seem to help. He is skeptical of giving her " special "

treatment, cuz she gets A's - sheesh!

Well, in the past weeks I have been in contact with the psychiatrist

from last year, got a letter of diagnosis from her, including

recommendations for school accomodations. I am now awaiting a call

back from the school counselor. I plan to meet with her, and request

a 504. ( I really don't know what I'm doing... but need to learn to

be a better advocate for . Courage is not my strong suit... so

you guys are a lot of help.)

OK, so I spoke with the Biology teacher this morning. There are a lot

of weird things about him personally, and I think he's barely a

mediocre teacher, probably burned-out, has poor social skills, BUT I

don't think he is a bad or cruel person... or at least I hope not. I

asked for his take on yesterday, and he said that day-dreams a

lot (this from a kid who expends a tremendous amount of energy each

day to try to LOOK normal), and that she refused to watch the film! I

explained that even though that was how it LOOKED to him, that this is

not at all what was really going on with her. I told him that I now

had the doctor's diagnosis, and wow! - what a difference that makes

over a lowly MOM saying her child has nbd's. So, now he starts

apologizing, and saying he will apologize to her in case if he hurt

her feelings, NOW THAT HE KNOWS... well why did I bother talking to

him in August?!? (He again brought up that she is doing well -

getting a 97 - that's not the point... I'm concerned about her sanity,

safety, health!!! what good will an A do her if she kills herself?)

Anyway, this may backfire, and that is why didn't want me to

talk to him (might make it worse), but I thought if I were the

teacher, I would want to know. He did ask to call me back in a week,

which indicates to me that he is willing to change his behavior and

work with us on this... I pray a lot...

Comments anyone... did I do the right thing?

Also, even though the psychiatrist didn't know any therapists (nearby)

experienced in treating OCD, I started calling around and am meeting

with one soon who sounds promising... I don't know if I can talk

into therapy, but I thought I'd at least meet with her, and go

from there.

Thanks for any help/suggestions/encouragement...

Marlys in SC

[Guest guest]

Hi Patty, I have been reading your posts for a while now and and want to assure

you that YOU ARE STRONG. If you know that being with family will not have a good

effect on your daughter, then you are strong because you realize it! You are

strong because you are reaching out for help for both you and your daughter.

You are strong because you have had the ability to share some things that many

many others would not because they might be ashamed or wonder what others might

say or think about them. You have been able to face all that is happening to

yourself and Shauna and ask for help in the areas that you do not know about.

You are so open and honest to our suggestions and you want to make a difference

in your daughters life....a weak person would not be able or willing to do this!

You might be feeling kind of worn out now....I experience that often myself!

But never lose sight of the fact that YOU ARE STRONG!!!!! On another note, have

you tried getting some type of vibrating alarmed watch that Shauna could wear

to be that might be of help in getting her up in the morning? in

Southeastern PA

patricia manzanares <pattymanzanares@...> wrote: Dear jana thats my

problem now im not strong i have so many other concrns in my life to deal with,

i dont know where to turn to first,, thanks your sweet Jana patty in calif,

Re: Re: update on

In a message dated 10/26/01 4:55:50 PM Pacific Daylight Time,

pattymanzanares@... writes:

> Hi at least you can be with the family , my girl and i have to be away from

> the family due to my daughters problem

Stay Strong Patty, Your not alone.

Jana

[Guest guest]

Dear , thank you so much for your kind words, you dont know how good it

made me feel, your such a good person to take the time to write what you did,

anyway thank you, im going to put this on my dresser and every time i feel weak

with myself im going to read it hah hah thank you Patty in calif

Re: Re: update on

In a message dated 10/26/01 4:55:50 PM Pacific Daylight Time,

pattymanzanares@... writes:

> Hi at least you can be with the family , my girl and i have to be away from

> the family due to my daughters problem

Stay Strong Patty, Your not alone.

Jana

[Guest guest]

Thanks for you support and suggestions. I do appreciate that. I'm

expecting a call back from the school counselor today... will let you

know how things go.

Marlys

> Hi Marlys, I'm glad the teacher is coming around. I, too, had to

> learn to be more outspoken.

[Guest guest]

Judy,

thanks for your response to me. I didn't realize that I needed to

request the 504 in writing, so I will do that. I have a

considerable amount of info on accommodations, including the

Teaching the Tiger book, but that's a good idea to review 's

Law. I need to write some good notes for myself so I don't get too

nervous, emotional, overwhelmed... :-)

Thanks,

Marlys

> Ya did good! Now you need to write a letter asking for a 504 plan.

The clock doesn't start ticking until they receive that

letter--meeting with them is fine, but don't wait till then to send

the letter. Doesn't have to be a long or detailed letter--just say

that because of her health problems she requires school accomodations

so you are asking for a 504 plan. They then have ex amount of time to

grant you the hearing. Meanwhile, be obtaining info on effective

strategy for obtaining the 504 plan and making it a good one. There

is lots of info on sLaw website, plus the archives of this group

must have tons of advice on this issue. I have saved a lot of it

myself, so I could forward it if you can't find it for some reason.

>

> Judy

> update on

>

>

> Hi all!

> I haven't posted for a while and want update you, ask for

> encouragement, and welcome the newcomers to the list - welcome!!

I am

> Marlys in SC, solitary parent to , 16-yo in the 10th grade

with

> Tourette's, OCD, and sensory sensitivities.

>

> I can't remember when I last wrote, but school is the toughest

part of

> 's life, particularly her Biology teacher/class.

Yesterday,

> when she was watching a nature movie (which she likes), she was

> shielding her eyes from nervous movements that are triggers for

her

> tics/compulsions. The teacher told her not to do this, and

threatened

> her with ISS. (These situations have been ongoing and

escalating.)

> was so frustrated that she did everything in her power to

not

> blurt out something to him, and just glared at him. When she told

me

> about this, she seemed about to explode - literally. Well, I told

her

> this was unfair, and that it was beyond what she could deal with

by

> herself, and that I would talk to him (again). I had talked to

him at

> the beginning of the semester, explaining her nbd's, triggers,

etc.,

> and it didn't seem to help. He is skeptical of giving her

" special "

> treatment, cuz she gets A's - sheesh!

>

> Well, in the past weeks I have been in contact with the

psychiatrist

> from last year, got a letter of diagnosis from her, including

> recommendations for school accomodations. I am now awaiting a

call

> back from the school counselor. I plan to meet with her, and

request

> a 504. ( I really don't know what I'm doing... but need to learn

to

> be a better advocate for . Courage is not my strong

suit... so

> you guys are a lot of help.)

>

> OK, so I spoke with the Biology teacher this morning. There are a

lot

> of weird things about him personally, and I think he's barely a

> mediocre teacher, probably burned-out, has poor social skills, BUT

I

> don't think he is a bad or cruel person... or at least I hope not.

I

> asked for his take on yesterday, and he said that

day-dreams a

> lot (this from a kid who expends a tremendous amount of energy

each

> day to try to LOOK normal), and that she refused to watch the

film! I

> explained that even though that was how it LOOKED to him, that

this is

> not at all what was really going on with her. I told him that I

now

> had the doctor's diagnosis, and wow! - what a difference that

makes

> over a lowly MOM saying her child has nbd's. So, now he starts

> apologizing, and saying he will apologize to her in case if he

hurt

> her feelings, NOW THAT HE KNOWS... well why did I bother talking

to

> him in August?!? (He again brought up that she is doing well -

> getting a 97 - that's not the point... I'm concerned about her

sanity,

> safety, health!!! what good will an A do her if she kills

herself?)

> Anyway, this may backfire, and that is why didn't want me

to

> talk to him (might make it worse), but I thought if I were the

> teacher, I would want to know. He did ask to call me back in a

week,

> which indicates to me that he is willing to change his behavior

and

> work with us on this... I pray a lot...

> Comments anyone... did I do the right thing?

>

> Also, even though the psychiatrist didn't know any therapists

(nearby)

> experienced in treating OCD, I started calling around and am

meeting

> with one soon who sounds promising... I don't know if I can talk

> into therapy, but I thought I'd at least meet with her,

and go

> from there.

>

> Thanks for any help/suggestions/encouragement...

> Marlys in SC

>

>

>

>

[Guest guest]

Thanks for the update! I miss hearing stories about the Princess!

Di, mom to Jake(19,nda) and 4 (DS)

Pennsylvania

[Guest guest]

Sandi,

I'm glad they agreed to do the t-tubes fro . Let me know how it goes

for him. We've got another 2 weeks of antibiotics & then we'll see how

Autumn does. If the ears get infected again, we'll ask for a consult for

the t-tubes. Luckily Cooks Children from Ft. Worth has an " outreach " clinic

here, so we could get an appointment for one of the traveling docs. It may

take a few months, but it would be better than traveling there for an

appointment & then turning around a week or so later for surgery. Ft. Worth

is 5 hours away from here & it's too hard on us to make the trip twice--I'd

rather just do once.

I hope the surgery goes well--you're right. . .I wish they had sinus tubes

too!

Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan (10 months)

[Guest guest]

Beth,

Thanks for the input. We where also looking at the Rhino flow. The sinuneb

looks like its the way to go due to it has the ability to administer meds and

also a irrigation unit. They sell it as one unit now. We were very

impressed by the website very informative.

Hows Wade doing? When is his next IVIG We would like to be praying for him

on that day.

Thnaks for the info on sinuneb, you have helped us make up our mind

le

[Guest guest]

Beth,

Thanks for the input. We where also looking at the Rhino flow. The sinuneb

looks like its the way to go due to it has the ability to administer meds and

also a irrigation unit. They sell it as one unit now. We were very

impressed by the website very informative.

Hows Wade doing? When is his next IVIG We would like to be praying for him

on that day.

Thnaks for the info on sinuneb, you have helped us make up our mind

le

[Guest guest]

le,

Good to hear that is feeling so much better now that he's back on ivig.

Just a quick note about the Sinuneb machine.... has been using it

for nebulized antibiotics for the last few weeks & he tolerates it well & I

have noticed that it seems to work quite well, especially for prophalactic

antibiotic prevention of acute sinusitis. I think it helps control the

chronic sinusitis also but he hasn't been on it long enough for me to really

tell yet. Just thought I would let you know we like it & think it was worth

the money .My insurance did cover most if not all of the cost of the

equipment & each drug shipment is billed just like a regular prescription at

the drug store ($20 co-pay).

Hugs to from us!

Beth, Mom to Wade, 15 (CVID,etc...)

>From: daniellepenne@...

>Reply-

>

>Subject: Update on

>Date: Tue, 14 May 2002 19:49:53 EDT

>

>Well, its been 13 days since 's IVIG........He has been put back on an

>every three weeks schedule for two years then retest in the summer of 8th

>grade................He had been off for 8 months for re testing, before

>that

>he had been on every three weeks for 4 years.

>

>I just spoke with his teachers today and asked if they noticed a

>difference.

>They said its like night and day. is much more engaged in class now,

>full of Tom Foolery , these 6 grade teachers have never seen this

>Perky. even says I feel so much better! We are excited for him!!!

>

>We still have bouts with headaches which we are seeing an acupuncture at

>the

>pain clinic at LPCH and it seems to help. Still some fatigue but nothing

>like it was when we were off IVIG. Stuff nose but no infection! We are

>looking into a sinuneb machine for irrigation check it out at

>www.sinuspharmacy.com Our Dr told us about it.

>

>Well, we are extremely happy that is feeling better with IVIG.

>Hopefully it continues..........

>

>Someone just shared this recently and I wanted to pass it

>on.........sometimes it is hard to accept what is happening in our lives

>and

>our children's lives this was really encouraging for me, yes my kid has

>issues that need to be addressed but thats not who he

>is.................this

>is what was shared

>

> " We are not our diseases! We may have problems

>that have names, but they do not take over our soul. We have to learn

>to live with them, but we do not become the poster child for it.

>Having the knowledge can help us adapt our lives to deal with

>problem, but you can't give in to it by taking it on as part of you. "

>

>

>We are so fortunate to have this group to be able to gather support from.

>It

>was such a relief when I found this site and was able to share what was

>happening and know you all understood..............thanks for being there.

>

>le

> 12 Selective Antibody def., 7 surgeries total ....none while on IVIG

>IVIG every three weeks

_________________________________________________________________

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[Guest guest]

Hi Danialle,

Glad I could help with info on the sinuneb. Wade is not going to get any

more ivig infusions until the " powers that be " can figure out why he reacted

so strongly these last 2 infusions & what changes need to be amde to

hopefully avoid this type of reaction in the future, at least on a regular

basis. His ped is trying to arrange for him to be seen by Dr. Stanley

Schwartz in New York, who apparently specializes in treating CVID patients

who are having problems with ivig, among other things. We are waiting to

hear back from his office, hopefully today. So, any time you wat to pray

will be just fine

Thanks for the thoughts & prayers! I'll kep you posted. Hugs to form

us!

Love,

Beth, Mom to Wade, 15, (CVID,etc...)

>From: daniellepenne@...

>Reply-

>

>Subject: Re: Update on

>Date: Tue, 14 May 2002 23:06:47 EDT

>

>Beth,

>Thanks for the input. We where also looking at the Rhino flow. The

>sinuneb

>looks like its the way to go due to it has the ability to administer meds

>and

>also a irrigation unit. They sell it as one unit now. We were very

>impressed by the website very informative.

>

>Hows Wade doing? When is his next IVIG We would like to be praying for him

>on that day.

>Thnaks for the info on sinuneb, you have helped us make up our mind

>

>le

_________________________________________________________________

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[Guest guest]

I know you've heard stories, but I wanted to share my mom's to demonstrate

the power of prayer. Mom was diagnosed with a 4.5 out of 5 tumor - 5 being

terminal. 6 out of 9 lymph nodes were malignant. She had a radical

mastectomy, breast, lymph nodes and part of her back, then went through

radiation and chemo. She had a 99% chance of the cancer coming back

somewhere in her body within the first year. That was about 3 and a half

years ago. She had at least 5 churches praying for her (I think I put it

out on all the lists I was on at the time, too). Prayer is powerful.

But with that said, God doesn't always choose to heal everyone. Sometimes

he delivers us FROM circumstances and sometimes he delivers us THROUGH

circumstances. Just use this experience to totally lean on and trust Him.

God doesn't cause all the bad things in this world, but sometimes he allows

them to happen so glory will be brought to Him, and sometimes we don't get

to see how the glory was brought to Him on this side of heaven. God's ways

are not our ways. I went through thinking had leukemia several years

ago. When it was all over (and he didn't - but I think he was miraculously

cured) someone commented on how I handled it so well. I thought I did

terrible, but people were watching and thought I was super-naturally calm.

You are still on my prayer list that I pray daily for.

Loriann AKA Flitter the Christian clown

Wife to Dewight

Mom to , 12 years, Down Syndrome, PDD-NOS and Celiac Disease.

, 3 years and Strong Willed

[Guest guest]

wrote:

s

Hi everyone, I just wanted

to let you

know that I did go to the hospital, they

ran several tests,, blood, exray and an

ultrasound, and didnt see anything.

they beleive it may be an ulcer so I

scheduled an appointment with my GI

to schedule an endoscopy. They did

give me stronger pain medication called

pamalor, Ive never heard of this pain

medication, but sure hope it works!! So

I am at home, so you dont have to

worry!

,

Pamelor isn't really a pain medication,

but here is the information about it from the Walgreen's site...

Drug Info For: PAMELOR 50MG CAPSULES

Generic Name: NORTRIPTYLINE (nor-TRIP-ti-leen)

Drug Manufacturer: MALLINCKRODT

Common Uses: This medicine is a tricyclic antidepressant

used to treat depression. It may also be used to treat chronic pain and

other conditions as determined by your doctor.

How to use this Medicine: Follow the directions

for using this medicine provided by your doctor. STORE THIS MEDICINE at

room temperature, away from heat and light. CONTINUE TO TAKE THIS MEDICINE

even if you feel better. Do not miss any doses. IF YOU MISS A DOSE OF THIS

MEDICINE, take it as soon as possible. If it is almost time for your next

dose, skip the missed dose and go back to your regular dosing schedule.

Do not take 2 doses at once. If you take 1 dose daily at bedtime, do not

take missed dose the next morning.

Cautions: AFTER YOU START USING THIS MEDICINE,

several weeks may pass before you feel the full benefit. DO NOT STOP TAKING

THIS MEDICINE without checking with your doctor.

KEEP ALL DOCTOR AND LABORATORY APPOINTMENTS while

you are using this medicine.

BEFORE YOU HAVE ANY MEDICAL OR DENTAL TREATMENTS,

EMERGENCY CARE, OR SURGERY, tell the doctor or dentist that you are using

this medicine. DO NOT DRIVE, OPERATE MACHINERY, OR DO ANYTHING ELSE THAT

COULD BE DANGEROUS until you know how you react to this medicine. Using

this medicine alone, with other medicines, or with alcohol may lessen your

ability to drive or to perform other potentially dangerous tasks. LIMIT

YOUR ALCOHOL CONSUMPTION while you are taking this medicine. This medicine

will add to the effects of alcohol and other depressants. Ask your pharmacist

if you have questions about which medicines are depressants. ALCOHOL, HOT

WEATHER, EXERCISE, AND FEVER can increase dizziness. To prevent dizziness

or fainting, sit up or stand slowly, especially in the

morning. Also, sit or lie down at the first sign

of dizziness or weakness. THIS MEDICINE MAY CAUSE increased sensitivity

to the sun. Avoid exposure to the sun, sunlamps, or tanning booths until

you know how you react to this medicine. Use a sunscreen or protective

clothing if you must be outside for a prolonged period. DO NOT BECOME OVERHEATED

in hot weather or during exercise or other activities since heatstroke

may occur. BEFORE YOU BEGIN TAKING ANY NEW MEDICINE, either prescription

or over-the-counter, check with your doctor or pharmacist. Caution should

be used in the elderly since they may be more sensitive to the effects

of this drug.

FOR WOMEN: THIS MEDICINE HAS BEEN SHOWN TO CAUSE

HARM to the human fetus. IF YOU PLAN ON BECOMING PREGNANT, discuss with

your doctor the benefits and risks of using this medicine during pregnancy.

THIS MEDICINE IS EXCRETED IN BREAST MILK. IF YOU ARE OR WILL BE BREAST-FEEDING

while you are using this medicine, check with your doctor or pharmacist

to discuss the risks to your baby.

Possible Side Effects: SIDE EFFECTS that may occur

while taking this medicine include dry mouth, drowsiness, dizziness, headache,

nausea, weakness, diarrhea, excess sweating, heartburn, unpleasant taste,

weight gain, or an increased appetite especially for sweets. If they continue

or are bothersome, check with your doctor. CHECK WITH YOUR DOCTOR AS SOON

AS POSSIBLE if you experience constipation; blurred vision or other vision

changes; eye pain; fast, slow, or irregular heartbeat; hair loss; shakiness;

fainting; nervousness or restlessness; twitching of the face or tongue;

mood swings; loss of balance; uncontrolled movements of arms and legs or

stiffness; difficulty speaking and swallowing; unusual bleeding or bruising;

sore throat or fever; skin rash and itching; swelling of hands, face, lips,

eyes, throat, or tongue; irritability; ringing

in the ears; seizures; yellowing of the skin or eyes;

hallucinations; or chest pain. If you notice

other effects not listed above, contact your doctor,

nurse, or pharmacist.

I hope you are able to get some

relief from the drug though!

Love Always,

Anne

[Guest guest]

l harris wrote:

I obtain good pain relief from a combo of Percocet

and

Vistaril. My neuro says that Vistaril is for the

nausea that my pain induces.

Lee,

Vistaril enhances the effects of the percocet.

It is an antihistamine, and works for anxiety & relaxation.

Here is a great site to check out about Vistaril

(hydroxyzine).... it tells you more about what I was trying

to say above.

http://my.webmd.com/content/article/4046.1273

I hope it helps a bit... I believe everyone should

KNOW as much as possible about the medications that are on!!

Love Always,

Anne

[Guest guest]

l harris wrote:

Thanks so much Anne!! That is good info. I also take

the Vistaril separately, when I have nausea. It works

well for me!! I try to only go to docs that believe in

educating their patients. I went to one doc who

thought that education was a bad thing. I think he was

prejudiced against all of us women too!!

Lee

Hi Lee,

Oh, I don't make points with doctors because I

question EVERYTHING they are trying to do or say about me.

On more than one occasion it has saved my life because MDs don't always

read my allergy list before prescribing meds for me. It amazes

me that with all my documented allergies, doctors would still try to give

me meds I am allergic to because they don't think my allergies are REAL.

More than once I have been told that it is not possible to have the amount

of allergies I do. You would think with the possibility of

malpractice hanging over them, they would be a little more careful!

Or at least not try to play russian roulette with my life!

About the only drug I can have for nausea is Vistaril,

because me & compazine are NOT friends. It was my first

drug allergy in 1992, and I came very close to dying after only 1 dose

of the drug. So my options these days are to puke, or have

Vistaril when the doctors will give it to me. Usually the doctors

make me go through the 1st option.

I am mighty cold, it is only 66 degrees F (furnace

is totally screwed up!) in my living room where the computer is so I have

to go jump into my warm bed now before my toes break off from being frozen.

I can also smell smoke, so I have to go do something before my allergies

go off with vengeance!

I'll talk to you again soon!

Love Always,

Anne

[Guest guest]

Got it. Take care, pal......... hope your pain will subside real soon.

Ling

Update on

Hi everyone,,

I wanted to let you know that I am having extreme stomache pains,,, Some of it is my Crohns, and Im not sure about the rest,,, it just doesnt all feel like a Crohns flare up,, I am going to try to get into see my GI today,,, if not Im going to the ER,,, if I dont write you guys back later, They have admitted me and I might be gone for a few days,, so dont worry!!

[Guest guest]

wrote:

I

was wrong,, it is not Pamelor,,, as I thought the prescription said,, its

Panlor?????

Hi ,

I haven't heard of this drug, but it IS a pain

medication. Here is the information about it from Walgreen's

dot com.

http://www.walgreens.com/library/finddrug/druginfo.jhtml?_DARGS=%2Flibrary%2Ffinddrug%2Finfosearchresults.jhtml.27_A & _DAV=14494

I hope it gives you the pain management effects

you are hoping for!

Love always,

Anne