Patty

[Guest guest]

Yes, we are very thrilled to say the least. Will celebrate tomorrow along with Easter...I went and bought a bottle of our favorite wine today , course, none for Rob...he'll be having CHOCOLATE!!

and Rob 14 Spondy

On Sat, 10 Apr 2004 13:13:08 EDT Emeraldsx3@... writes:

Hi :Wonderful news WHOHOOO!!!!!!!!! Are you having a negative test party, you should. What a huge relief, you must feel like a ton has been lifted off of you.P.S. I never got your original posting. As a matter of fact, I missed one of Helen's too, something weird going on with my old computer again.Take care.Patty

[Guest guest]

Hi :

I'm with Rob. I'd be having chocolate too LOL. Happy Easter and enjoy your

celebration.

Take care.

Patty

[Guest guest]

Hi Patty,

sorry I can't answer your questions.I know the oldest was a carrier and had her tonsils out and now the other two are getting theirs out.Ashly is still flaring but the rash is better.I haven't talked to mom yet to find out if my advise on the pm pred dose worked or not.

never got strep since the JRA until we had his tonsils removed,go figure.Another thing is had a very nasty viral infection and 2 weeks later hurt his ankle and the next morning is when everything started.

Glad Cailtlin is still feeling great.

Hugs

Becki and 5 systemic

[Guest guest]

In a message dated 4/21/04 6:11:31 PM Eastern Daylight Time,

staciar@... writes:

<<

Oh, Patty,

I had no idea you wre going through this.... on top of everything

with your girls. You poor thing, like you don't have enough to

worry about. I'm thinking of you.

Stacia

>>

Thanks Stacia. You're a sweetie. Stress test is this coming Tuesday and

ultrasound scheduled for next Friday. How I hate going to the doctors LOL:)

Take care.

Patty

[Guest guest]

Are they going to hook you up with a holtier monitor.. Its where they monitor you for 24 hours. It's a good way to determine if the symptoms are brought up by other things..

Lots of Prayers

[Guest guest]

In a message dated 4/22/04 2:34:18 PM Eastern Daylight Time,

bncknwurnumber@... writes:

<<

Are they going to hook you up with a holtier monitor.. Its where they

monitor

you for 24 hours. It's a good way to determine if the symptoms are brought

up by other things..

Lots of Prayers

>>

Hi :

I did the 24 hour monitor once upon a time. That's when they figured out the

PVC's my heart was throwing off. So far we are not going down that road

again.

First going with the stress test (Tuesday) and then an ultrasound (next

Friday) and take it from there. You know the internet is a wonderful thing, but

now I am getting worried about gallbladder cancer! Sometimes to much research

isn't advisable, but I am a curious type person.

Take care.

Patty

[Guest guest]

Your too funny Patty. I know what you mean about research being bad. I'll be praying its nothing to serious.

Lots of love and Prayers

[Guest guest]

Hi Patty!

It's great to hear things are going well and that you've even been working part time! We are still the same group but Joanne bugged out on us.....NOT REALLY!!!!!!!! She also had a successful transplant and we are just thrilled how well she is doing, too!

Take care and enjoy:)

Amy

[Guest guest]

In a message dated 8/7/04 11:55:34 PM Eastern Daylight Time,

staciar@... writes:

>

> Patty,

>

> It will be so great to meet you and your three girls next summer in

> RI!!!

>

> Stacia

Thanks Stacia. It will be nice to meet you, your family and everyone:)

Take care.

Patty

[Guest guest]

Hi :

A little lighter with help LOL:) Wrinkles, what are those, oh yeah, those

thingys on my face. Badges of honor, I like that, better than the expression

'crows feet.'

Well, the cardio stated when I was there for the workup that people with MVP

w/r can get pain. That's what I am thinking or anxiety. I have been feeling

anxious. Of course, how can you not when your chest hurts, right, you start

wondering hhhmmm should I go to the ER, is it indigestion or the new norm. Was

actually planning on calling my internist tomorrow to see him and take it

from there. I have gone to him for over 10 years, I trust him and know him. I

am also going to see a gastro to rule out/in GERD.

I so agree about the peace of mind too. I certainly could drive myself crazy

over this. Funny, I've had this for many years, but as soon as he mentioned

'with regurg' (though I do suspect it's been that way all along, wish I could

find old records) and started reading more of what can happen when the heart

is forced to work harder, I started to freak.

Thanks for your concern , you're a sweetie.

I hope you get a good nights sleep. Bet we won't see postings from you at 1

am tonight/tomorrow:) Nighty night.

Take care.

Patty

[Guest guest]

Patty:

Ok, now I am really worried about you (and by the way, I AM brunette

(though sometimes a little lighter with some HELP lol) but I am naturally

brunette, though was a blue-eyed blonde when I was little. Fair

complexion and more wrinkles (badges of honor!) every day!

Anyway, Patty, I do think you should call your regular doctor or your

cardiologist and you need to be seen, ok? Even if it isn't anything going

on, you need the peace of mind or you'll drive yourself crazy! Please

call them in the morning, ok?

and Rob 15 Spondy

On Fri, 6 Aug 2004 21:43:44 EDT Emeraldsx3@... writes:

Hi :

Well, as I type this Rob is all done from his procedure WHOHOO. I am

praying

all went smoothly for him and he has no complications. They released my

brother (after a liver biopsy) after only 6 hours. I am relieved Rob is

staying

overnight! I am glad Rob wasn't nervous, that's half the battle. Better

to be

calm and relaxed going in, me give me Versed!

Don't you love it when the stitches are removed, that much closer to

being

healed:) Sorry to hear the hip one is itching, another healing process,

the

itches. How is the pain?

I am feeling okay. Still worried (you know me) about the discomfort in

my

chest/heart area. I keep reading heart related books, articles, online,

etc.

and making myself sick with what can happen, etc. I went out with a

friend for

dinner tonight and we stopped at a book store after and I went right to

the

medical section. She ended up pulling me away from the books knowing

that I was

making myself worry about the what if's etc.

Keeping the prayers going.

Let us know when you are home and how the biopsy went.

Take care.

Patty

[Guest guest]

Hi Stacia:

Thank you for your prayers. Yes, you are right. The smile on her face

summed it up:) Cupcake isn't smiling though, for obvious reasons.

How is Mr. Hunter doing?

Take care.

Patty

[Guest guest]

Patty,

I have been behing on posts and have just been reading about your

heck of a few days and all with Caitlin and Cupcake. Glad the cat

is home and Caitlin is happy about it. The smile on her face was

probably confirmation that you did what was best for you all.

Our prayers are with you.

Stacia and Hunter 8 systemic, iritis

[Guest guest]

Hi Helen:

I am sorry is not doing any better:( Sitting while waiting for the

bus, just sounds so sad for a little boy. I hope and pray the MTX kicks in

quickly and gives him some much needed relief.

Take care.

Patty

[Guest guest]

Hi Patty, im slowly plowing though my mail, although i dont seem to

be able to reply from my email account and have to go to the webpage

and do replies from there... kinda annoying, as i cant keep track of

those i need to reply to and those i dont....im sure im missed a few

welcomes to some of our new members, so to them im sorry!! and HI!!

Nick is not doing any better, his pred and MTX was increased 10 days

ago and so far i dont see any improvements except that the fever

didnt come back )) hes still having a tough time with his knees.

In fact this morning when he woke up he couldnt striaghten either

one out until i rubbed them and exercised them a little. He has to

sit on the driveway waiting for the school bus as standing is too

hard. hes seems to be hanging in there at school and is pretty wiped

out when he gets home ( lots of laying around). Last MTX increase

took 8 weeks to see an improvement ( which was his wonderful summer)

so we have a long road ahead. As long as hes doing so so and

managing to go to school each day, im just going to take ot day by

day. of course if it comes to the point that he starts to miss

school then i will need to talk to his doctor again.

I hope i read further on that Caitlin is doing better..

Hugs Helen and (7,systemic)

, Emeraldsx3@a... wrote:

> Hi Helen:

>

> How is all your way? How is Mr. Nick doing? I hope he is doing

wonderful

> and enjoying life.

>

> Thank you for keeping Caitlin in your prayers. As of this

afternoon (when

> she got home from school) the rash looks better. By the time we

go to the

> rheumy Thursday it will probably be gone, typically right. When

we stop the

> steroids we will see if it gets worse again.

>

> You have a very good memory. It was close to this time last year

that she

> got sick. She had her onset in November.

>

> Another pet lover:) We really do love our littler critters!

Cupcake started

> licking his incision so hubby is picking up a hard plastic collar

so he won't

> lick the wound. I can't allow him to do it as an infection is a

real

> possibility or stitches could be ripped out. So, unfortunately,

he will have to be

> an unhappy camper with it on. I hope he can still eat with it

on. When it's

> closer to the 7 days I may switch back. I am just glad he is back

home with

> us:)

>

> Take care.

> Patty

>

>

>

[Guest guest]

> When do

> they do labs again to recheck the liver function?

>

They'll do the labs again next Wednesday, and then decide what to do.

He also had a low white cell count but not very badly so.

Soili

[Guest guest]

Hi Patty,

Would you share your phone number with me? I would like to talk with you

about the kitty that has IBS. I think mine does too, and would like to speak

with you.

Thanks,

Rhue Green

Dr. Dasher

5/6/04

>From: NCGorgeous1963@...

>Reply-

>

>Subject: Re: Re: ATTN: Dr R or CLOS staff: ? re Potassium

>Date: Mon, 04 Apr 2005 09:55:31 -0400

>

>

>-----Original Message-----

>From: MrsTK5@..., Sent: Mon, 04 Apr 2005, << ...i would hate to just

>say " oh, do as you please " on this one -- i would feel awful if my advice

>contributed to someone having

>any kind of problem.>>

>

>I know exactly what you mean! That's why even though I can share my

>experiences, I always recommend folks to speak to CLOS for their own

>personal advice.

>

><< i am kind of accident prone and " murphy's law " is in effect in my life a

>LOT! LOL....>>

>

>LOLOLOL, and I thought I was the only one who employed . Well, I

>certainly keep him around on a full-time basis anyway.

>

><< so as for this gal...... i treaded lightly when it came to hydration and

>potassium.

>good luck to everyone and good health always!>>

>

>AMEN, Sister.

>

>*huggs*

>Patty H

>5'4 " , 253/160/???

>MGB, 8/25/03, Stsvl, Drs R and Chery

>TT & BA, 12/2/04, Chlt, Dr P Tucker

>

>

>

[Guest guest]

Hi ,

Yes! This is the school that we visited and are thinking about

sending our dd to when she is school age. It is so wonderful! All the

teachers are specially trained to work with deafblind children. We got

to attend several classes in action, one was a group of 3 yr olds! It

just seems like a wonderful environment to learn... the main

disadvantage is that the school is over 2 hrs drive from our home in

Huntsville. If we choose to send Abby there, we will have to move

closer to the school and my husband would have to find another job. We

love Huntsville and are hesitant to uproot all of our resources we

have here, but we want what is best for our dd. She comes first! We

are also looking into the local preschool programs to see what

services they can offer Abby... I just don't think they will be able

to meet her multiple needs the way HKS could.

What sort of schools did you attend as a child? HKS offers boarding

for all their kids, even starting at age 3. We are not ready to send

our preschooler off to board... maybe when she is older and she wants

to. Selfishly, I would love for her to attend a local preschool so I

can be involved in her class!

We will look into trying to locate someone with specific experience

with deafblindness... you are so right that this issue is very

different than just blindness or just deafness. We have asked AIDB if

there is anyone in their EI program locally who could help us learn

what things to do to help our daughter in her deafblindess, but so far

we haven't been able to get any results.

I did ask a vision specialist who came to the house yesterday with

our teacher about O & M. She said that the OT should be addressing most

of the needs Abby has now in her stage of development, but when she

gets more mobile, an O & M instructor could help her learn to use a

cane. She said the O & M instructors mostly work with school age

children. Because Abby is still unable to sit unsupported, I guess we

have a while before she can learn to use a cane. She gave us

suggestions of putting different textured objects at certain walls, so

that when she starts rolling or crawling more, she can find them and

have a sence of where she is in the house. I thought that was a good

idea. Meanwhile, I've taken your advice and have started signing

short words into her hands while we play with objects like a " ball " ,

" rattle " , " tamborine " etc. I'm more diligent with doing the body

signs also for routine tasks such as changing her diaper and eating.

Thank you for encouraging me in this area! Your advice is so valuable

to our family.

Thanks again for you help!!!

Patty

[Guest guest]

In a message dated 12/3/05 12:35:44 AM Eastern Standard Time,

snooksmama@... writes:

>

> Patty:

> Good to see you posting again. Sorry to hear about all the thyroid

> troubles. I do hope that your hubbies security clearance goes through

> quickly. How is his health? I hope all goes smoothly from here on out.

> and Rob 16 Spondy

>

Hi :

Thank you:) Hubby's health is fairly well. You wouldn't know what he has

been through to look at him. I still see some deficits, but I know him so

well. I don't know how long the brain takes to make a full recovery, but I

think

he still has time on that one.

How is Mr. Rob doing? How about the kidneys? How are you feeling? Hubby's

job hours change yet?

Take care.

Patty

[Guest guest]

Patty:

He had been diagnosed with GERD some time ago, but for some reason was no

longer being treated at all. Hmmmm

He is very bright, school has always come quite easily to him. He is a

sweet guy and a good kid.

Thanks again for your concern.

and Rob 16 Spondy

On Thu, 20 Apr 2006 08:47:42 EDT ThreeMayEmeralds@... writes:

Hi :

Great news on your nephew. Those ulcers certainly do so nasty. Did he

know

he had them before this?

Congrats on his being named governor's scholar. A 'free ride' to

college is

AWESOME. Must be one very bright young man.

Will keep him in my prayers for a quick recovery.

Take care.

Patty

[Guest guest]

hello

just wanted to ask

how hard is it to stay on such a strict diet?

my son's dr sid i should not try it - do to his mild austic behaviors

he is hard to get to eat more than a few different foods

his seizure have gone from 30/40 a day to 3 or 4 just during the night

he has a vns implant and is on keppra, lamictl, depokote, and valium for

seizures.

plus adderall and zoloft for behavior.

i just still think with the diet we can lower the meds and i really worried

about how to keep up such a strict plan- he is 8 years old and very head strong

about what he wants

thanks

sonia

Hallie <brucker3@...> wrote:

Patty,

My grandson who is 7 years old now started having seizures at age 4. They were

partial complex at first. He was started on different seizure medications,

trileptal was first. His seizures went from stares and blinky eyes to dropping

over. He was also very out of it, like a drunk, on the medications.

His EEG was showing constant seizures (spike wave type) every 15 minutes. He

lost all of his language and couldn't talk at all.

Our Neuro suggested either brain surgery or trying the ketogenic diet. My

daughter elected to try the diet.

He went into the hospital throwing up and very sick. He went into ketosis right

away. The next day he was seizure free.

The diet is high fat and very low carb. It has to be administered by a doctor

and nutritionist. Menus have to be made up and it needs to be followed with

everything being weighed to the nearest gram. Most kids don't go on it unless

the meds don't work. (The meds have some scarey side effects too).

Tanner learned to talk slowly again within 3 weeks on the diet. He had not been

without language for too long so I think that helped. He had been diagnosed with

Landau Kleffner Syndrome because of the language loss and the spike waves on the

EEG.

Tanner has been on the diet for 2 years now and is still doing wonderful. He

plays on a t ball team and is seizure free. He can read and run and looks and

acts like a normal boy. His ratio on the diet has been lowered and he is getting

a few more carbs now. He is slowly being weaned off of it and still seizure

free.

He has one pill a day of keppra to be weaned and then he is off all medication.

He has to do only one change at a time and then wait a couple of weeks. He was

on 5 medications at once when he started the diet.

He has been a miracle. He had a lot of people praying for him.

The diet helps 2/3 of the children who try it. 1/3 become seizure free on it. I

belong to a list on called ketogenic if you want to check it out there.

Good luck on your quest for seizure freedom for your child.

Hallie (Tanners grandma)

[Guest guest]

> Patty,

> My grandson who is 7 years old now started having seizures at age

4. They were partial complex at first. He was started on different

seizure medications, trileptal was first. His seizures went from

stares and blinky eyes to dropping over. He was also very out of it,

like a drunk, on the medications.

> His EEG was showing constant seizures (spike wave type) every 15

minutes. He lost all of his language and couldn't talk at all.

> Our Neuro suggested either brain surgery or trying the ketogenic

diet. My daughter elected to try the diet.

> He went into the hospital throwing up and very sick. He went into

ketosis right away. The next day he was seizure free.

> The diet is high fat and very low carb. It has to be administered

by a doctor and nutritionist. Menus have to be made up and it needs

to be followed with everything being weighed to the nearest gram.

Most kids don't go on it unless the meds don't work. (The meds have

some scarey side effects too).

> Tanner learned to talk slowly again within 3 weeks on the diet. He

had not been without language for too long so I think that helped. He

had been diagnosed with Landau Kleffner Syndrome because of the

language loss and the spike waves on the EEG.

> Tanner has been on the diet for 2 years now and is still doing

wonderful. He plays on a t ball team and is seizure free. He can read

and run and looks and acts like a normal boy. His ratio on the diet

has been lowered and he is getting a few more carbs now. He is slowly

being weaned off of it and still seizure free.

> He has one pill a day of keppra to be weaned and then he is off all

medication. He has to do only one change at a time and then wait a

couple of weeks. He was on 5 medications at once when he started the

diet.

> He has been a miracle. He had a lot of people praying for him.

> The diet helps 2/3 of the children who try it. 1/3 become seizure

free on it. I belong to a list on called ketogenic if you want

to check it out there. Good luck on your quest for seizure freedom

for your child.

> Hallie (Tanners grandma)

>

>

[Guest guest]

thanks for the info

i am talking to daniel's nero dr next week about the diet.

wish us luck!!

i am so gald it has woked so well for you

there was i movie on lifetime moie netwok this morning called " first to do no

harm "

it was about a child that kept having seizures unil he started the diet- it

really got to me and it was a great movie!!!!

so if anyone gets a chance to see it- do it

Hallie <brucker3@...> wrote:

> Patty,

> My grandson who is 7 years old now started having seizures at age

4. They were partial complex at first. He was started on different

seizure medications, trileptal was first. His seizures went from

stares and blinky eyes to dropping over. He was also very out of it,

like a drunk, on the medications.

> His EEG was showing constant seizures (spike wave type) every 15

minutes. He lost all of his language and couldn't talk at all.

> Our Neuro suggested either brain surgery or trying the ketogenic

diet. My daughter elected to try the diet.

> He went into the hospital throwing up and very sick. He went into

ketosis right away. The next day he was seizure free.

> The diet is high fat and very low carb. It has to be administered

by a doctor and nutritionist. Menus have to be made up and it needs

to be followed with everything being weighed to the nearest gram.

Most kids don't go on it unless the meds don't work. (The meds have

some scarey side effects too).

> Tanner learned to talk slowly again within 3 weeks on the diet. He

had not been without language for too long so I think that helped. He

had been diagnosed with Landau Kleffner Syndrome because of the

language loss and the spike waves on the EEG.

> Tanner has been on the diet for 2 years now and is still doing

wonderful. He plays on a t ball team and is seizure free. He can read

and run and looks and acts like a normal boy. His ratio on the diet

has been lowered and he is getting a few more carbs now. He is slowly

being weaned off of it and still seizure free.

> He has one pill a day of keppra to be weaned and then he is off all

medication. He has to do only one change at a time and then wait a

couple of weeks. He was on 5 medications at once when he started the

diet.

> He has been a miracle. He had a lot of people praying for him.

> The diet helps 2/3 of the children who try it. 1/3 become seizure

free on it. I belong to a list on called ketogenic if you want

to check it out there. Good luck on your quest for seizure freedom

for your child.

> Hallie (Tanners grandma)

>

>

[Guest guest]

Everything seemed to go well from what she told me. I think she was very nervous though, she didn't eat a whole lot of her lunch, but I think she's going to be okay, I see the confidence level returning. So did you schedule an appt for yet??toniasdogsandi <toniasdogsandi@...> wrote: Just wanted to see how s first day back at School went~ Hope things went well!

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

Thanks for your reply Tonia, She's 11 weeks post op today. She had a very short spasm yesterday that woke her up. As our luck has it, the milk we had turned sour, she drank OJ which I don't think was the best idea, but it worked. We tried a milk shake yesterday, she's no where near over the dumping syndrome with sweets, she almost had to do her homework in the bathroom (yuk). I did also convince her to eat several small meals in a days time. Thanks again, Patty toniasdogsandi <tcooper1973@...> wrote: It has taken since Dec to gain back 18 pounds.Even though it has been a struggle to get his food to go down-he eats as much now as he did before surgery so its not because of lack of eating on his part.I dont know why its taken him so long.Maybe its just going to take a while as well.It has only been a month right? How is she?Any better with the sweets yet? Tonia

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