Kathe

[Guest guest]

In a message dated 2/11/2005 8:46:11 P.M. Eastern Standard Time, Kathe

writes:

From: Kathe Sabetzadeh <lv2ryd@...>

Subject: Re: Beth

Thank you so much for the info Kathe!

Love and Prayers,

Beth

[Guest guest]

thank you i was thinking that maybe they was wrong with the dx.

because it does change from hour to hour and it is very hard to

schedule anything with the kids i have to take it day by day and well

my two understand that but my 3 step kids do not sence i have only

known them for 4 years and then we only get them every other weekend \

thank you for your response

melissa

[Guest guest]

On my diabetes mailing lists, we often say YMMV (Your mileage may

vary.) It is just as true for RA as it is for diabetes. I think the

important thing is not to give up hope; just keep pestering your rheumy

until he gets it right. Sue

On Friday, October 28, 2005, at 10:31 AM, stillbreathing29 wrote:

>

> Another thing I have to remember and I think ia a lesson for everyone

> is that what works for one doesn't necessarily work for the other,

> I'm afraid and I really wish that was not the case.

[Guest guest]

Thank you.... I feel much better after my crying jag yesterday.. I know theres

nothing i can do about it, and some better days always happen...I love roller

coasters, but this ride never stops....Thanks again, and hugs and prayers for

you... Debbie

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

Photos – Showcase holiday pictures in hardcover

Photo Books. You design it and we’ll bind it!

[Guest guest]

Fran,

I am truly amazed that our schedules coincide. I, too, am thrilled. It will be

great to get a chance to spend time together again. I am sure ph would

rather have older kids there, hopefully that will be so. Isaac loves to have

older kids around so he will love being with ph. My husband will not likely

make it this time. He cannot get away from work so easy.

How are you getting there? Will you drive again? We are flying commercial, of

course, but just got accepted into Miracle flights and they are assisting us.

We are under Dr. G's care, not Dr. K. How long are you at NIH?

Kathe

mom to Isaac 2

Nebraska

Kathe

Kathe,

Yes, I am so THRILLED we will once again meet up!!

I just heard from Beverly this morning... she finally got to my email I had sent

prior to her vacation. I did not want to bother her again... since she must be

swamped with emails from being away on vacation and suddenly to have to take

over for Plass.

I am so happy we will get to sit and chat.

Will your husband be able to join too?

Looking forward to our trip.

ph is so excited about returning to the Children's Inn.

Can't wait to catch up.

Love

Fran

Fran Bulone RN

Mom to ph 7yr

Waxhaw NC

/

[Guest guest]

Hello Kathe,

I too am amazed we are scheduled again at the same time!

ph is so excited about coming back to the Children's Inn. It is one of the

few places I allow him to wonder around ALONE! LOL I feel safe there... between

the security we go to when we get onto the grounds of NIH and just the relaxing

atmosphere inside the Inn.... Not sure how long he will hand with Isaac...

though! LOL But we can hang with Isaac! LOL

It must be difficult to take time off from work so often... for your husband.

You guys go up way more frequently than ph and I do.... We can have girls

nights to chat and eat together!

We are driving.

Angel Flights is great but I am so fearful of those 4-10 seat planes. The ride

is about 7.5 hours if I hit DC right.... for traffic. ph is wonderful in the

car as he has traveled with his PFS in Florida as an infant until we moved....

here... every few months up to Shands. That ride from Palm Beach to Shands

averaged 4 hrs so he is a well adjusted car rider! LOL

As for the length of our trip... I am not sure. I am hoping we will only be at

the clinic Tues and Wed.... We arrive Monday. Actually I need to call today and

make sure they have our reservations at the Inn.

I am waiting to hear from Beverly. She wrote yesterday and said she was going to

discuss ph's schedule with Dr Kastner today and she would give me the

estimate. He is getting his usual follow up with the fever team, and then he is

getting a full work up with neurology again... for neuro-cognitive/psych

testing. Not sure if that is done in a few hours or a couple days???

They mentioned doing another seizure work up since he has not had that done

since 13 months old... He rarely gets febrile seizures but they are sort of

cautionary.

He also is having trouble with his corneas. This is not new... they did an exam

under anesthesia when we were there in March and his both eyes have inflamed

corneas.... He constantly rubs them because they " feel funny " ... so I mentioned

that again.

I don't think we will be there the full week like last time... but they add

things depending on how we answer questions so we will see. I told the school he

will be out the week at minimum.... I will need to look into the school issue

this year. I believe when they reach 7 NIH does do school work with them!

Anyway, I will let you know more details when I get them.

Love

Fran

Fran Bulone RN

Mom to ph 7yr

Waxhaw NC

/

[Guest guest]

Fran,

We moved from DC a couple of years ago...make sure to see the Museum of

American History and the Lincoln Monument, That was always my kids favorite.

Trish

Fran Bulone <fbulone@...> wrote:

Kathe,

When are you actually arriving??

We may come up Sunday late, instead of Monday.

They are going to try and schedule his eye exam on Monday early... which would

be good so we could site see...

I am going to reserve the Inn room for Sunday even if this does not come

through...

I want to take ph on the subway into DC again and visit the Washington

Monument and White House area since last time we did the sonian and Capital

...... there was not time. This will give us some play time for his enjoyment. If

you are free at all and there maybe you can join us.

Just thinking out loud. I know Isaac is young... but we can borrow the stoller

for him!

Fran

Fran Bulone RN

Mom to ph 7yr

Waxhaw NC

/

[Guest guest]

Fran,

Our flight comes in Tuesday afternoon, we will not get to the Inn until 4:00ish.

Our clinic days are Wed - Fri. I won't get our schedule from Nikki until the

week before.

It would be great to get out and about, we will have to compare schedules when

we get closer to the week.

Kathe

Kathe

Kathe,

When are you actually arriving??

We may come up Sunday late, instead of Monday.

They are going to try and schedule his eye exam on Monday early... which would

be good so we could site see...

I am going to reserve the Inn room for Sunday even if this does not come

through...

I want to take ph on the subway into DC again and visit the Washington

Monument and White House area since last time we did the sonian and Capital

...... there was not time. This will give us some play time for his enjoyment. If

you are free at all and there maybe you can join us.

Just thinking out loud. I know Isaac is young... but we can borrow the stoller

for him!

Fran

Fran Bulone RN

Mom to ph 7yr

Waxhaw NC

/

[Guest guest]

Kathe

I would check in with Bev. Nikki isnt there anymore and lots of people have said

their schedules have changed. I dont want you getting there and nothing be set

mom to kiara6

[Guest guest]

Nikki is there for Dr. GoldBach Mansky's patients...

She is not gone...

And... Kathe's little man is followed by Dr. G.

Just want to clarify.

Fran

Fran Bulone RN

Mom to ph 7yr

Waxhaw NC

/

[Guest guest]

Hi ,

Thank you for your concern. Nikki is still with Dr. Goldbach-Mansky. She is

just not with Dr. Kastner. We are on Dr. G's protocol because Isaac is not of

any typical presentation and they have not found anyone out there like him. So

he does not fit the periodic fever as he fevers every day and his rash is

nothing like they have seen before. We came into NIH under NOMID because it is

the closest they could diagnose at the time. I hope I am making sense here.

Sorry, if this is confusing.

Kathe

Isaac 2

Nebraska

Re: Kathe

Kathe

I would check in with Bev. Nikki isnt there anymore and lots of people have said

their schedules have changed. I dont want you getting there and nothing be set

mom to kiara6

[Guest guest]

Tis ok

Kiara doesnt fit anything either but Dr Kastner is fascinated by her

Re: Kathe

Kathe

I would check in with Bev. Nikki isnt there anymore and lots of people have

said their schedules have changed. I dont want you getting there and nothing be

set

mom to kiara6

[Guest guest]

Try 100% pure emu oil for your burn. They are using it now in burn units and

find that burn patients heal in 1/3 the time with much less pain and scarring!!

In fact, I just had a lady at my booth today (I'm doing a demonstration booth at

our fair with my soapmaking) who had been burned 2 years ago. She had 2nd and

3rd degree burns and had just had her bandage removed that day that she met me.

She bought emu oil from me and started using it every day on the burn and you

cannot tell that she has ever been burned. There is NO scarring and no

redness!! She is so happy that she was not scarred as the burn covered her

entire left arm from wrist to elbow.

So anyway, find some PURE emu oil and put it on a couple of times a day. It

will help with the pain also.

Hugs

[Guest guest]

Hi :

Thanks so much for the tip! I am a bit worried by the

scarring, as it is over the entire top of my right

hand. Right now, I am continuing to use the burn

cream that the doctor has prescribed, changing

bandages twice a day, and it is looking much better

than last week, and the oozing has stopped, so I take

that as a good sign. Most of the dead skin has peeled

off too. Not pretty, but not as bad as before!~

As soon as I don't have to use the burn cream, I will

definately be looking into Emu oil - I have also been

told that Vitamin E is also good for scarring. I will

have to keep the hand wrapped for several months and

avoid having it in the sun, but if I can put something

on it to help with scarring before I wrap it, I will

definately be doing it! thanks again -

Kathe in CA

--- Bickford <Bickfordla@...> wrote:

> Try 100% pure emu oil for your burn. They are using

> it now in burn units and find that burn patients

> heal in 1/3 the time with much less pain and

> scarring!! In fact, I just had a lady at my booth

> today (I'm doing a demonstration booth at our fair

> with my soapmaking) who had been burned 2 years ago.

> She had 2nd and 3rd degree burns and had just had

> her bandage removed that day that she met me. She

> bought emu oil from me and started using it every

> day on the burn and you cannot tell that she has

> ever been burned. There is NO scarring and no

> redness!! She is so happy that she was not scarred

> as the burn covered her entire left arm from wrist

> to elbow.

> So anyway, find some PURE emu oil and put it on a

> couple of times a day. It will help with the pain

> also.

> Hugs

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

__________________________________________________

[Guest guest]

Oh Kathe,

I too want to wish you well on your recovery.

For some reason, I thought you were describing something that happened

to you in the past, not something you were dealing with now.

Also, you seem to have a pretty supportive bunch around you and a

sweetpea daughter.

take care.

Ebony

[Guest guest]

Vitamin E oil is great to use for scaring but I was told that you must

wait until it healed before using it. What I mean is no open areas

at all. Otherwise you can cause infection. My daughter busted open

her head a while back and we are now using it on her scar. Also I was

told that massaging the oil in real good is key. Something about

massage on the scar helps.