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,

Giving her one upon waking would prob. be really helpful as all of the gunk

in her chest will have settled overnight. THis will help to break things

up. You can give them every 4 hrs or closer if she's having difficulty

breathing. We did them last week w/ both kids.

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  • 1 month later...
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Jan:

It sounds like maybe Ben needs an adjustment in his Gamma since he has had

some small illnesses? Let me know how his trough level comes out.

We never had a problem getting the gamma N before, just this time since

trying to restart the IVIG.

My girls are so-so. My middle daughter is on Zoloft now and doing better,

but complaining of loose stools. ? not sure if this is a side effect of the

Zoloft.

My oldest daughter is still having so many seizures. We see the neuro

for her tomorrow. We are in the process of weaning away a med that was not

working.

My wonderful other half is hanging in there. We still have no idea why he

has had the 2 DVT's in his leg, but last opinion was that he had some

breakdown in the vein that was damaged since the first blood clot. So he

will stay on blood thinners.

is still complaining of terrible pain in the nose, sinus areas, ear

pain and constant headache. The fatigue as I mentioned in my previous post

is terrible. It took me until 6:30 PM to get him out of bed last night.

Sorry if I repeat myself but I am so worried right now I can't see straight.

Anyway, the weather has cleared, after about 8 days of rain so things have to

be getting better!!!!!!

Thanks so much for asking.

Tina

Mike CVID, JRA asthma and sinusitis.

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Hi Tina,

Sorry Mike is having these problems. It does sound like he is very sick

to stay in bed all day without eating , etc. I have been concerned about the

Gamimune N shortage and so far they have had enough for Ben. He just had trough

level Friday and I am anxious to hear how it went. He has had several

minor illnesses lately. His eyes really bothered him with his cold, constant

tearing and stinging, worse around lights or sunlight for a few days. I hope

Mike can get the IVIG and do well with it and get on the road to recovery

and summer fun. He deserves it. How are your girls doing?And your dh?

Jan

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  • 3 years later...

Dear Kim,

Don't be down on yourself and feel like a failure for putting in

public school!! You are doing the best job you can, and it's a nearly impossible

thing to raise a kid with OCD. I am sooooooooo thankful that I can send my

daughter to school during the day, despite all the added stress that the school

year brings. I really need to regroup before dealing with her again in the

afternoon. It's just so exhausting!!!

My daughter started middle school this week and had to leave for a

therapy appointment this morning. When she returned to school she couldn't

figure

out what class to go to and the vice principal sent her to the wrong room twice,

etc. Sounds like your son's day... but she bounced back and still said it was

a great day in the end, espite missing lunch, losing her binder, etc. Whew.

All the daily schedule stuff will get easier and your son will adjust to

the daily grind soon too - both my kids are physically exhausted this

afternoon (as am I!!!!) but I know that by next Friday they'll be completely

used to

all of this again. And it must be a relief for your daughter to not be

" contaminated " all day long, every day!

Good luck, and give yourself a pat on the back for all you've been doing,

in NV

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Thanks, , for the encouraging words. I did have to call the school

about his first period teacher. Apparently he screams at the students,

especially if someone nods off (world history at 8 am might nod me off)

and carries a big stick. Counselor was nice and offered to talk to the

teacher about without mentioning that I called, kind of to ask him

to take Dave under his wing, etc. as he was new and all.... Hopefully

it will be better. When the first class is so stressful, which it was

the day of the meltdown (he had nodded off and got yelled at), the whole

day can go down the tubes.

I must admit I like him being not here during those hours (though I love

him dearly). It is very nice for to not have to sneak around and

hide for fear of him seeing her and freaking out.

Thanks for the encouragement that he will fall into the schedule and get

over the exhaustion. Hopefully I will, too! Besides having to help him

do his homework, my 18 year-old started community college and needs my

tutering in Algebra. I thought I graduated that boy! (My friend asked

me if I was home schooling him for college!)

Well, good night! Hope your family (and everyone else's too) have a

restful long weekend.

Kim

>

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Thanks, , for the encouraging words. I did have to call the school

about his first period teacher. Apparently he screams at the students,

especially if someone nods off (world history at 8 am might nod me off)

and carries a big stick. Counselor was nice and offered to talk to the

teacher about without mentioning that I called, kind of to ask him

to take Dave under his wing, etc. as he was new and all.... Hopefully

it will be better. When the first class is so stressful, which it was

the day of the meltdown (he had nodded off and got yelled at), the whole

day can go down the tubes.

I must admit I like him being not here during those hours (though I love

him dearly). It is very nice for to not have to sneak around and

hide for fear of him seeing her and freaking out.

Thanks for the encouragement that he will fall into the schedule and get

over the exhaustion. Hopefully I will, too! Besides having to help him

do his homework, my 18 year-old started community college and needs my

tutering in Algebra. I thought I graduated that boy! (My friend asked

me if I was home schooling him for college!)

Well, good night! Hope your family (and everyone else's too) have a

restful long weekend.

Kim

>

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Thanks, , for the encouraging words. I did have to call the school

about his first period teacher. Apparently he screams at the students,

especially if someone nods off (world history at 8 am might nod me off)

and carries a big stick. Counselor was nice and offered to talk to the

teacher about without mentioning that I called, kind of to ask him

to take Dave under his wing, etc. as he was new and all.... Hopefully

it will be better. When the first class is so stressful, which it was

the day of the meltdown (he had nodded off and got yelled at), the whole

day can go down the tubes.

I must admit I like him being not here during those hours (though I love

him dearly). It is very nice for to not have to sneak around and

hide for fear of him seeing her and freaking out.

Thanks for the encouragement that he will fall into the schedule and get

over the exhaustion. Hopefully I will, too! Besides having to help him

do his homework, my 18 year-old started community college and needs my

tutering in Algebra. I thought I graduated that boy! (My friend asked

me if I was home schooling him for college!)

Well, good night! Hope your family (and everyone else's too) have a

restful long weekend.

Kim

>

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  • 5 months later...

Kim,

Some of the things we have in our dd's are things like telling her before

hand if there is going to be a fire drill, ( if it is unscheduled a teacher

is to stay near her to avoid panic attacks), posting the schedule changes to

help with adjustment, sits closer to the teacher, they are teaching

breathing/relaxation for test taking. She refuses to use the bathroom at

school, so they are offering sanitizers and the use of the nurses bathroom.

Hope this helps.

Amy

_____

From: & Kim Cotter

Sent: Friday, February 18, 2005 3:36 PM

To:

Subject: update on

Hi, everyone

Just wanted to let you know that we had our intensive evaluation with

at a teaching hospital in Eastern Iowa yesterday.

We met with a psychiatrist, a psychologist (whose specialty is pediatric

OCD!) and a resident in her last year before becoming a psychologist.

took a written evaluation with 478 questions.

We were there for 5 hours or so. They met with us individually and with

individually and then with all 3 of us together. They said that

it looked like he has had a lot of improvement since beginning meds.

They said it was a " stroke of genius " putting him in school. (I told

them it was a survival tactic) They recommended we do a 504 plan for

him (It took him over 3 hours to do the evaluation, so they saw that he

needs more time to complete in-school assignments and tests). One of

the doctors called our psychologist and asked him to read Dr. Marsh's

book for a step-by-step plan for treating Dave. (She is acquainted with

our psychologist through a professional association.) She said he could

go up a little on his zoloft or go to lexapro if we wanted to, but as

long as zoloft is working we should stay on that.

They said we are doing a lot of the right things now, and that they

could tell we love him. (nice warm fuzzy!)

In all it was a very good experience. They gave us a lot of hope for a

future with manageable OCD.

Thanks to those of you who thought of us yesterday.

Now I have a question:

What sorts of things should I look for on a 504? Besides increased time

on tests, etc.? I guess being able to go to the bathroom as needed

would be one. Any suggestions would help, I will be able to schedule a

meeting after everyone gets his copy of the report from the appointment.

Kim in IA

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Kim,

Some of the things we have in our dd's are things like telling her before

hand if there is going to be a fire drill, ( if it is unscheduled a teacher

is to stay near her to avoid panic attacks), posting the schedule changes to

help with adjustment, sits closer to the teacher, they are teaching

breathing/relaxation for test taking. She refuses to use the bathroom at

school, so they are offering sanitizers and the use of the nurses bathroom.

Hope this helps.

Amy

_____

From: & Kim Cotter

Sent: Friday, February 18, 2005 3:36 PM

To:

Subject: update on

Hi, everyone

Just wanted to let you know that we had our intensive evaluation with

at a teaching hospital in Eastern Iowa yesterday.

We met with a psychiatrist, a psychologist (whose specialty is pediatric

OCD!) and a resident in her last year before becoming a psychologist.

took a written evaluation with 478 questions.

We were there for 5 hours or so. They met with us individually and with

individually and then with all 3 of us together. They said that

it looked like he has had a lot of improvement since beginning meds.

They said it was a " stroke of genius " putting him in school. (I told

them it was a survival tactic) They recommended we do a 504 plan for

him (It took him over 3 hours to do the evaluation, so they saw that he

needs more time to complete in-school assignments and tests). One of

the doctors called our psychologist and asked him to read Dr. Marsh's

book for a step-by-step plan for treating Dave. (She is acquainted with

our psychologist through a professional association.) She said he could

go up a little on his zoloft or go to lexapro if we wanted to, but as

long as zoloft is working we should stay on that.

They said we are doing a lot of the right things now, and that they

could tell we love him. (nice warm fuzzy!)

In all it was a very good experience. They gave us a lot of hope for a

future with manageable OCD.

Thanks to those of you who thought of us yesterday.

Now I have a question:

What sorts of things should I look for on a 504? Besides increased time

on tests, etc.? I guess being able to go to the bathroom as needed

would be one. Any suggestions would help, I will be able to schedule a

meeting after everyone gets his copy of the report from the appointment.

Kim in IA

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Hi Kim,

I'm so glad it went well and that everything in general is looking

up!!

Re the 504 Plan, some things we used and then some things I've heard

of:

Extended time for assignments with no grade penalty. For us the

amount of extended time varied per teacher; plus we tried to keep up

with the faster paced classes. With we would try to have

all " this " week's work turned in the following Monday. Didn't always

happen as he forgot or lost something. One or 2 teachers were fine

so long as he had the assignments in by the end of the grading

period; nice! I told the teachers that if they would ask , he

could generally locate the assignment somewhere in his

backpack/locker.

Extended time for all tests, including state.

I was allowed to write his work when needed (he would dictate).

A safe place to go, begin allowed to leave room, when a person begins

getting anxious is good for some students.

They had a reading program (required) at one time that I tried to get

him out of as since he had trouble reading due to OCD, he wasn't

reaching the goals and grades were suffering. They wouldn't exempt

him from it but the next year they took the reading program " out of "

the English/Language Arts grade so things worked out.

He was allowed to do things like write in the test book if needed

instead of using an answer sheet. Circle answers/multiple choice

instead of writing letter/answer (hard for teachers to read his

writing).

Short answers instead of complete sentences.

Those are some I think of now. Let us know what finally ends up in

the Plan!

> Hi, everyone

> Just wanted to let you know that we had our intensive evaluation

with

> at a teaching hospital in Eastern Iowa yesterday.

>

> We met with a psychiatrist, a psychologist (whose specialty is

pediatric

> OCD!) and a resident in her last year before becoming a

psychologist.

> took a written evaluation with 478 questions.

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Kim,

It's always nice to hear of a success story! We're so happy for you!

In our case we met with the principal, school psychologist (who

wasn't any more useful than the chair she was sitting in) and two or

three of her teachers (she's in 6th grade). There is always the

balance between nurturing/supporting the OCD and nurturing the

student. It's not always a clear line. When you meet with the

school make sure in whatever strategies come out, that they aren't

giving in to OCD (and thus confirming OCD's need for attention), but

are instead helping your kid to function their best in spite of the

OCD.

When you explain what your son's fears, obsessions and compulsions

are, you might hopefully be surprised at their suggestions on how to

accomodate him. Let them suggest ways. We were pleasantly surprised

at the school's support for . They had her in their best

interest and honestly wanted to create a positive learning

environment for her. When the school does a child study (what it's

called in VA), it's an offical recognition and documented plan of

action for your child. They have to follow-up and follow through on

it. When we told them that she was really struggling with the sheer

amount of work she was doing and how long it was taking her (3 - 4

hours/night - she's a perfectionist), they cut down on her workload

(doing every other math problem for example). That was ok as long as

she showed she was still learning the necessary skills (she maintains

a B+/A average).

The bottom line you and the school need to stay focused on is that

whatever you do you are not compromising on his learning experience

or his responsibilities, but are merely accomodating his special

needs. For example, he's not any less intelligent for taking more

time to take a test. The tests are not about how fast he can finish,

but about how well he knows the material.

I would say to present his case to the school (his obsessions and

compulsions), and let them suggest some things to do first. You'll

be surprised when they say that they've dealt with OCD kids before!

It's not public knowledge (to protect privacy), but counselors and

teachers see special circumstances all the time. Your kid is not

unique or the first one with special needs they have seen. Take a

list you can suggest if they don't have any ideas, but remember it's

not your job to tell them how. It's your job to tell them what and

let them figure out how. I'm not suggesting to drop the load on

their shoulders, only suggesting to you that you should not feel

responsible for having all the answers for them.

HTH,

FD

> Hi, everyone

> Just wanted to let you know that we had our intensive evaluation

with

> at a teaching hospital in Eastern Iowa yesterday.

>

> We met with a psychiatrist, a psychologist (whose specialty is

pediatric

> OCD!) and a resident in her last year before becoming a

psychologist.

> took a written evaluation with 478 questions.

>

> We were there for 5 hours or so. They met with us individually and

with

> individually and then with all 3 of us together. They said

that

> it looked like he has had a lot of improvement since beginning

meds.

> They said it was a " stroke of genius " putting him in school. (I

told

> them it was a survival tactic) They recommended we do a 504 plan

for

> him (It took him over 3 hours to do the evaluation, so they saw

that he

> needs more time to complete in-school assignments and tests). One

of

> the doctors called our psychologist and asked him to read Dr.

Marsh's

> book for a step-by-step plan for treating Dave. (She is acquainted

with

> our psychologist through a professional association.) She said he

could

> go up a little on his zoloft or go to lexapro if we wanted to, but

as

> long as zoloft is working we should stay on that.

>

> They said we are doing a lot of the right things now, and that they

> could tell we love him. (nice warm fuzzy!)

>

> In all it was a very good experience. They gave us a lot of hope

for a

> future with manageable OCD.

>

> Thanks to those of you who thought of us yesterday.

>

> Now I have a question:

> What sorts of things should I look for on a 504? Besides increased

time

> on tests, etc.? I guess being able to go to the bathroom as needed

> would be one. Any suggestions would help, I will be able to

schedule a

> meeting after everyone gets his copy of the report from the

appointment.

>

> Kim in IA

>

>

>

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>

> Hi Kim,

> I'm so glad it went well and that everything in general is looking

> up!! 

>

> Re the 504 Plan, some things we used and then some things I've heard

> of:

>

Lots of great ideas snipped!

One thing that we have in my son's IEP (which could easily go into a

504) is a statement that frequently odd, or irrational, refusals to

follow instructions are related to OCD, and the teacher is to delay

disciplinary action until after speaking with the special education

teacher.

We then verbally give the example of a time when due to some gender OCD

he went through a period of time where he would totally refuse to read

stories with female characters. The teacher, rightly, just dropped the

issue until after getting a chance to speak with me. We pointed out

that if the teacher had made an issue of it, my son would have ended up

having a huge fit right then and there in the class.

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>

> Hi Kim,

> I'm so glad it went well and that everything in general is looking

> up!! 

>

> Re the 504 Plan, some things we used and then some things I've heard

> of:

>

Lots of great ideas snipped!

One thing that we have in my son's IEP (which could easily go into a

504) is a statement that frequently odd, or irrational, refusals to

follow instructions are related to OCD, and the teacher is to delay

disciplinary action until after speaking with the special education

teacher.

We then verbally give the example of a time when due to some gender OCD

he went through a period of time where he would totally refuse to read

stories with female characters. The teacher, rightly, just dropped the

issue until after getting a chance to speak with me. We pointed out

that if the teacher had made an issue of it, my son would have ended up

having a huge fit right then and there in the class.

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Since my son started school I've heard the same two things - he's a

very nice boy, well-behaved, polite....and STUBBORN.

I guess his teachers have been up against his ocd since the beginning.

>

> >

> > Hi Kim,

> > I'm so glad it went well and that everything in general is

looking

> > up!! 

> >

> > Re the 504 Plan, some things we used and then some things I've

heard

> > of:

> >

>

> Lots of great ideas snipped!

>

> One thing that we have in my son's IEP (which could easily go into

a

> 504) is a statement that frequently odd, or irrational, refusals to

> follow instructions are related to OCD, and the teacher is to delay

> disciplinary action until after speaking with the special education

> teacher.

>

> We then verbally give the example of a time when due to some gender

OCD

> he went through a period of time where he would totally refuse to

read

> stories with female characters. The teacher, rightly, just dropped

the

> issue until after getting a chance to speak with me. We pointed

out

> that if the teacher had made an issue of it, my son would have

ended up

> having a huge fit right then and there in the class.

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  • 3 years later...

Well done .

Thanks for all the help, especialy when you've had so much on your plate.

Are you going on to the PhD now? I'm sure you could do it.

Patience

Subject: Update on To: Autism-Biomedical-Europe Date: Thursday, 8 January, 2009, 7:15 PMHi guys,

Some of you may know I came to the UK 4 years to study the interaction between food and behavior at a university here.

Bloody-minded as I was, I figured I could cope with 2 aged parents who were in and out of doctors' surgeries, a child who was still not altogether 'there', (a perfect husband who didn't understand why he

didn't have a perfect child), a new country and an ageing brain. Right?...uh, uh wrong!

I was enrolled as a PhD candidate but I think the stress got to me in the end and I crashed in the first two years and suffered some terrrible health problems which threw a wrench into my engine. It's taken me up until now to get my health back again but in the meantime I had to step down to a Masters programme (statistically -based). Today, I had my thesis defence and the result is that although I have to make some corrections basically I am through. My examiners said I have some publishable material which was nice to hear.

So that's it, folks.....

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

DISCLAIMER

No information contained in this post is to be construed as medical advice. If

you need medical advice, please seek it from a suitably qualified practitioner.

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, Congratulations!!! A great achievement and especially so

with everything else you have going on and then all the support and

input you give us all on here.

emily

>

> Hi guys,

>

> Some of you may know I came to the UK 4 years to study the interaction

> between food and behavior at a university here.

>

> Bloody-minded as I was, I figured I could cope with 2 aged parents who

> were in and out of doctors' surgeries, a child who was still not

> altogether 'there', (a perfect husband who didn't understand why he

> didn't have a perfect child), a new country and an ageing brain.

> Right?...uh, uh wrong!

>

> I was enrolled as a PhD candidate but I think the stress got to me in

> the end and I crashed in the first two years and suffered some

terrrible

> health problems which threw a wrench into my engine. It's taken me up

> until now to get my health back again but in the meantime I had to

step

> down to a Masters programme (statistically -based). Today, I had my

> thesis defence and the result is that although I have to make some

> corrections basically I am through. My examiners said I have some

> publishable material which was nice to hear.

>

> So that's it, folks.....

>

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Woohooo :-) What a great feeling to be finished and to get

such positive feedback from your examiners. Congratulations and

thank you for taking so much time to help everyone on the list during

this process.

Anita

>

> Hi guys,

>

> Some of you may know I came to the UK 4 years to study the

interaction

> between food and behavior at a university here.

>

> Bloody-minded as I was, I figured I could cope with 2 aged parents

who

> were in and out of doctors' surgeries, a child who was still not

> altogether 'there', (a perfect husband who didn't understand why he

> didn't have a perfect child), a new country and an ageing brain.

> Right?...uh, uh wrong!

>

> I was enrolled as a PhD candidate but I think the stress got to me

in

> the end and I crashed in the first two years and suffered some

terrrible

> health problems which threw a wrench into my engine. It's taken me

up

> until now to get my health back again but in the meantime I had to

step

> down to a Masters programme (statistically -based). Today, I had my

> thesis defence and the result is that although I have to make some

> corrections basically I am through. My examiners said I have some

> publishable material which was nice to hear.

>

> So that's it, folks.....

>

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Congratulations !What a fantastic achievement !

Hopefully you will get a bit of a rest now.

Love Sharon x

>

> Hi guys,

>

> Some of you may know I came to the UK 4 years to study the

interaction

> between food and behavior at a university here.

>

> Bloody-minded as I was, I figured I could cope with 2 aged parents

who

> were in and out of doctors' surgeries, a child who was still not

> altogether 'there', (a perfect husband who didn't understand why he

> didn't have a perfect child), a new country and an ageing brain.

> Right?...uh, uh wrong!

>

> I was enrolled as a PhD candidate but I think the stress got to me

in

> the end and I crashed in the first two years and suffered some

terrrible

> health problems which threw a wrench into my engine. It's taken me

up

> until now to get my health back again but in the meantime I had to

step

> down to a Masters programme (statistically -based). Today, I had my

> thesis defence and the result is that although I have to make some

> corrections basically I am through. My examiners said I have some

> publishable material which was nice to hear.

>

> So that's it, folks.....

>

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Well done.

I can't imagine trying to get any form of post grad study done with

such complexities at home.

Very impressive.

Liam

>

> Hi guys,

>

> Some of you may know I came to the UK 4 years to study the

interaction

> between food and behavior at a university here.

>

> Bloody-minded as I was, I figured I could cope with 2 aged parents

who

> were in and out of doctors' surgeries, a child who was still not

> altogether 'there', (a perfect husband who didn't understand why he

> didn't have a perfect child), a new country and an ageing brain.

> Right?...uh, uh wrong!

>

> I was enrolled as a PhD candidate but I think the stress got to me

in

> the end and I crashed in the first two years and suffered some

terrrible

> health problems which threw a wrench into my engine. It's taken me

up

> until now to get my health back again but in the meantime I had to

step

> down to a Masters programme (statistically -based). Today, I had my

> thesis defence and the result is that although I have to make some

> corrections basically I am through. My examiners said I have some

> publishable material which was nice to hear.

>

> So that's it, folks.....

>

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How wonderful, ! Congratulations to you on managing all that you

have and for also doing it all so well!

x

>

> Hi guys,

>

> Some of you may know I came to the UK 4 years to study the interaction

> between food and behavior at a university here.

>

> Bloody-minded as I was, I figured I could cope with 2 aged parents who

> were in and out of doctors' surgeries, a child who was still not

> altogether 'there', (a perfect husband who didn't understand why he

> didn't have a perfect child), a new country and an ageing brain.

> Right?...uh, uh wrong!

>

> I was enrolled as a PhD candidate but I think the stress got to me in

> the end and I crashed in the first two years and suffered some

terrrible

> health problems which threw a wrench into my engine. It's taken me up

> until now to get my health back again but in the meantime I had to step

> down to a Masters programme (statistically -based). Today, I had my

> thesis defence and the result is that although I have to make some

> corrections basically I am through. My examiners said I have some

> publishable material which was nice to hear.

>

> So that's it, folks.....

>

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Dear ,

How wonderful that you have achieved this huge task... Let us know

when we can start to call you DR.............!!!! sounds kinda nice dr.

......

and managed to

keep the family in tact and most importantly HEALTHY... well done, now

go on and treat yourself, you so deserve it.

Thank you for all your help too...

xx

Update on

> Hi guys,

>

> Some of you may know I came to the UK 4 years to study the interaction

> between food and behavior at a university here.

>

> Bloody-minded as I was, I figured I could cope with 2 aged parents who

> were in and out of doctors' surgeries, a child who was still not

> altogether 'there', (a perfect husband who didn't understand why he

> didn't have a perfect child), a new country and an ageing brain.

> Right?...uh, uh wrong!

>

> I was enrolled as a PhD candidate but I think the stress got to me in

> the end and I crashed in the first two years and suffered some terrrible

> health problems which threw a wrench into my engine. It's taken me up

> until now to get my health back again but in the meantime I had to step

> down to a Masters programme (statistically -based). Today, I had my

> thesis defence and the result is that although I have to make some

> corrections basically I am through. My examiners said I have some

> publishable material which was nice to hear.

>

> So that's it, folks.....

>

>

>

>

>

>

>

>

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

>

> DISCLAIMER

> No information contained in this post is to be construed as medical

advice. If you need medical advice, please seek it from a suitably qualified

practitioner.

>

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Many Congratulations lovely! You deserve all the success there is. And

you have been a tower of strength and a wealth of knowledge to many of

us on here. Well done babes, now pour something lovely and bubbly and

celebrate.

Luv N Hugs

Caroline

xx

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Many Congratulations lovely! You deserve all the success there is. And

you have been a tower of strength and a wealth of knowledge to many of

us on here. Well done babes, now pour something lovely and bubbly and

celebrate.

Luv N Hugs

Caroline

xx

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