update

June 2, 2001

-

Sweetie I pray they are every bit as successful with

you. Sounds encouraging. Something should make up for

the pain you have been put through.

Big hugs,

June 2, 2001

Hi ,

I wish your results had been different. I can tell you that a cousin of

my ex-husbands had this type of cancer. His kidney was removed and he is

just fine now. Back to doing everything he did before. As with you it was

a scarry time for him. You are in my prayers.

Me Mom

----------

> From: <dat2352@...>

>

> Subject: Re: [ ] update

> Date: Friday, June 01, 2001 8:56 AM

>

> Well I got the results of the kidney tumor biopsy last night and it is

> cancer. So next step, schedule the radio frequency ablation. My son,

Dan,

> will take me to get the cortisone shots in my knees in about an hour.

Then

> I sit and pray it helps. We are bringing the wheelchair, I hate this.

> Haven't heard from the pharmacy on the enbrel yet. Soon I hope! My big

> abdominal surgery isn't until September. The plastic surgeon want to

allow

> enough time for those bacteria hiding in my scar tissue to get killed!

> I tried to place the ferrets through a Rescue group but couldn't. Trying

to

> lessen the load on the family. I think but wish I didn't that the goats

> should go, but Steve is adamant that they shouldn't

>

> Temple

> Kuddle Kritters Farm

> 3 Fox Haven Way

> Chelmsford, MA 01824

>

> dat2352@...

> http://www.homestead.com/kuddlekrittersfarm/index.html

> http://www.homestead.com/kuddlekraft/index.html

> http://www.homestead.com/kuddlekrittersdairygoats/index.html

>

June 4, 2001

,

I am so sorry that your results came back positive. I pray that you will

have the same type of successful results that June has had. You sure have a

lot on your plate at this time. We on the board have VERY broad

cybershoulders should ever need them for anything.

Standing by with prayers & support across the miles.......

Gentle, tender, hand in hand, heart to heart angel hugs,

Debs

June 17, 2001

Beverly,

So glad to hear from you, and glad you found a good DR would could help you.

Wishing you continued recovery. Tery

June 17, 2001

Beverly,

That's nearly a miracle! I'm so happy that someone out there is on the ball.

Although I've only read about it in conjunction with breast cancer, would

you be considered to have lymphedema? Whatever the case, I'm glad that you

can breathe more normally now.

What dosage of prednisone are you at right now? Best of luck in tapering

down.

Thanks so much for sharing your good news. I hope more is coming your way!

[ ] Update

> Hi all my friends and new friends,

>

> After 3 pulmonologists, and lots of different treatments by each, I have

> an answer to my bad breathing!! I found a wonderful Dr who gave me a

> diagnosis. Seems all along I might not have asthma! He explained this to

> me it makes such sense. When I had the radiation treatments 24 yrs ago

> for Hodgkin's disease, they weakened my lymphatic system which is

> responsible for draining fluids out of you. I do have a bad case of

> congestive heart failure, but I am drinking less and take 80 mg of lasix

> a day. I stopped all my inhalers and no asthma attacks!! Now I know why

> when I could not breathe in the ER they could not understand why my

> pulse oxygen rate was in the upper 90's!

> As for the RA, it is imperative that I decrease my pred and have been

> doing so about 1 mg every 6 weeks. I flare a bit but I must do it. My

> sed is slightly elevated, as is my rf. Other than that LOL I am still

> working full time. So all in all I am ok. Weekends I live for sleeping

> late and or not getting out of bed except to eat and bathroom breaks

> <lasix makes daytime sleep hard>

> I hope everyone is doing good and I'll try to contribute more.

> Love,

> Beverly

July 23, 2001

,

Is he gfcf with the enzymes? If he's already gfcf, I would not add

in any problem foods until you've worked out the enzyme dose. Have

you tried going back to just one of the enzymes? Some kids cannot

tolerate Peptizyde and just take HN-Zyme Prime. Which enzymes are

you giving?

--- In @y..., " Carlson " <ckcarlson52@m...>

wrote:

> Hi, I've just started giving the enzymes to my grandson Tristan.

When we are successful in getting him into them right before a meal,

he seems to be having regression. (I put the powder of 1/2 of each

enzyme in liquid) He giggles hysteically which is a sign of gluten

and casein reaction, right? The times he has gotten the enzymes but

won't eat, he seems like he is experiencing dizziness, and an upset

stomach. Anybody else have a child that showed these reactions when

first starting the enzymes? CarlsonGet more from the Web.

FREE MSN Explorer download : http://explorer.msn.com

>

July 25, 2001

,

I would keep him totally gfcf as you can while first starting the

enzymes. The regression could be an opiate withdrawal effect from

some of those " bad " foods being broken down. It's a judgment call

for you on whether or not to try to ride it out while giving some

infractions, or go back on the diet to see if he can handle the

enzymes. Some kids have trouble with the Peptizyde, so you need to

determine where the problem is. The Pep should help with the foods

you listed, unless you are now adding highly phenolic fruit and

vegetables. For those foods, you would need to give him the HN-Zyme

Prime.

Let us know how it goes.

--- In @y..., " Carlson " <ckcarlson52@m...>

wrote:

> >Is he gfcf with the enzymes?

>

> , yes, but with some infractions at school, and sometimes he

manages to grab or sneak something he is not supposed to. It is the

DPP IV in the Pep that is beneficial to these kids isn't it? He eats

a lot of meat, which I thought the Pep also addresses. Bacon,

turkey, corn beef, and chicken he eats in good size portions. Carbs

are harder to get him to eat as well as veggies, but he will eat

fruit. Could the regression in behavior be temporary? Get

more from the Web. FREE MSN Explorer download :

http://explorer.msn.com

>

August 17, 2001

I cannot think of any reason why TMG would interfere with a

gluten/casein challenge. I am envious of you. I know some don't

respond to the diet and don't use it. We've been on the diet for 1

1/2 years now. I am pretty tired of it. Everytime I try to

reintroduce gluten or casein though, my children regress big time. I

am so glad to hear your child is doing so well with ABA.

Rhonda

> Hello everyone! My son is 100% GFCF for 3 mos. now. We have seen

no

> dramatic change within the 3 month period. He is dx with mild

> autism. WE think that his ABA therapy at home is really helping him

a

> lot more than the diet. Well, to see how he would react if we

> introduce the gluten & casein back, we slowly started giving them

to

> him one at a time. WE first gave him gluten & so far it has been 3

> days since he had them & there's no change in his behavior. We

then

> gave him casein today & so far, he's doing great. No change in his

> behavior at all. I stopped giving him the EnzymAid, so that's one

> factor here. I didn't think that the SNT was helping either, so I

> stopped giving him that. All of these, I stopped one at a

time...to

> see changes but none. All I'm giving him is the 1 tsp. of TMG. DO

> you think this would have an effect with our gluten & casein

> challenge? I didn't think so, but I would appreciate any comments,

> info or suggestions from you. TIA.

> It seems like the gfcf diet doesn't work for my son but it was

worth

> the try. We're still seeing more vocalization, imitation & same

happy

> kid, which is very encouraging. It's just not from the diet.

August 17, 2001

I think it is great you are seeing improvement in your child from his

therapies. This diet does not work for all kids, and yes yours

may be one of those. But I will mention that my son did not show any

" dramatic change " in the first three months either, altho I did see

enough that I did think it was noticeable. It took maybe 8 months

before I could use the word " dramatic " .

Have you considered any other food issues that may affect your son

more than gluten/casein? For example, I can give my son gluten/casein

with enzymes, and he will show a mild reaction. But if I give my son

red grapes with enzymes, he will flip off the chart.

But if you are sure your son's issues are not diet-related, then I do

believe it is pointless for you to continue it [unless you want to].

I am glad your son is improving tho, that is always a good thing!!

September 14, 2001

Hi -

I am so happy for you that you found a wonderful, caring SLP for your son -

that makes such a huge difference with these children. To answer your question

about PRO EFA, I can only tell you my personal experience and leave the rest for

the professionals and medical personnel. My son made astonishing improvements

on EFA's - he essentially went from non-verbal to talking ALL the time, plus his

behavior changed dramatically, for the better (you can read his story and EFA

success on www.verbaldyspraxia.com ) When I decided not to give him his EFA

piss for a couple of days, I did see a difference. Mainly in his behavior and

frustration level. It was almost as if his head was " clouding " up again. Since

EFA's are natural (fish oil) I am content with giving him his one capsule a day.

Anything that can help my precious boy. As far as if he will always have to

take it, I don't know. Hopefully soon with more research we will know an answer

to that question.

I hope this helps a little!

Carnell

North Carolina

www.verbaldyspraxia.com

CHERAB Outreach Coordinator

[ ] update

I have a question for you all. We are leaning strongly towards

putting on ProEFA but have one lingering concern that we can't

seem to find an answer to. If we start him on it and he shows

improvement, would he slide back when taken off? Is this something he

would have to take indefinitly? I would think that he would retain

any gains that he made but until I'm sure, I'll hold off. Any

thoughts would be welcome.

Thanks for " listening " to me again. Sorry I don't get on more often

but it's hard to keep up with you guys, let alone post too!

, mom to age 3.5 and Jonah age 1.2

September 14, 2001

I apologize to everyone - typo BIG TIME!!! I meant EFA PILL!!!

Sorry.....

[ ] update

I have a question for you all. We are leaning strongly towards

putting on ProEFA but have one lingering concern that we can't

seem to find an answer to. If we start him on it and he shows

improvement, would he slide back when taken off? Is this something he

would have to take indefinitly? I would think that he would retain

any gains that he made but until I'm sure, I'll hold off. Any

thoughts would be welcome.

Thanks for " listening " to me again. Sorry I don't get on more often

but it's hard to keep up with you guys, let alone post too!

, mom to age 3.5 and Jonah age 1.2

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November 14, 2001

Jeannette-

I am glad you gave me an update on your surgery and

diagnosis. You will be in my thoughts and prayers,

especially on the thirtieth. How is your poetry coming?

Anything new published. Hope you don't mind I am going

to forward this update to RASupport as well. I am sure

there are people there who remember you and will want to

know how you are doing and who will keep you in their

prayers as well. Big hugs and special prayers for

healing.

Love,

> Hello Friends and Family:

>

> After a long waiting and wondering, it has been found that my mass on my

> spleen has grown 3/4' in 4.5 weeks. Thus, I am scheduled for surgery on

> November 30th to have my spleen removed. They will not know for sure until

> then whether I have cancer or not. I am doing good however. Ed and I are

> going to see River Dance tonight, my big dream come true for a long time. We

> spent the weekend at the farm and I trying to stay busy. I had my vaccines

> yesterday and they need to be in my system 2 weeks before they can remove my

> spleen. Ed will keep you posted on my progress after my surgery if you want.

> (First I have to teach him how to use this computer; all he does is play

> games on it LOL!)! He is going hunting this weekend so I will spend the

> weekend with my folks and my friend from Saukville is coming to visit.

> Then the next week is Thanksgiving already and then is the countdown. Please

> keep me in your prayers.

>

> Much Love,

>

> Jeannette

November 14, 2001

Hi Jeannette,

Sorry to read you have to have surgery. You are in my prayers and I will

be lightning a candle for you. Prayers will get you through this, all the

prayers that were said for me got me through that horrible surgery, I had

to have. Hang in there we will all be praying for you.

Lynn

----------

> From: k.j.choate@...

> RA-Support < >; Ednettieolson@...

> Subject: [ ] Re: Update

> Date: Tuesday, November 13, 2001 11:15 PM

>

> Jeannette-

>

> I am glad you gave me an update on your surgery and

> diagnosis. You will be in my thoughts and prayers,

> especially on the thirtieth. How is your poetry coming?

> Anything new published. Hope you don't mind I am going

> to forward this update to RASupport as well. I am sure

> there are people there who remember you and will want to

> know how you are doing and who will keep you in their

> prayers as well. Big hugs and special prayers for

> healing.

> Love,

> > Hello Friends and Family:

> >

> > After a long waiting and wondering, it has been found that my mass on

my

> > spleen has grown 3/4' in 4.5 weeks. Thus, I am scheduled for surgery

on

> > November 30th to have my spleen removed. They will not know for sure

until

> > then whether I have cancer or not. I am doing good however. Ed and I

are

> > going to see River Dance tonight, my big dream come true for a long

time. We

> > spent the weekend at the farm and I trying to stay busy. I had my

vaccines

> > yesterday and they need to be in my system 2 weeks before they can

remove my

> > spleen. Ed will keep you posted on my progress after my surgery if you

want.

> > (First I have to teach him how to use this computer; all he does is

play

> > games on it LOL!)! He is going hunting this weekend so I will spend

the

> > weekend with my folks and my friend from Saukville is coming to

visit.

> > Then the next week is Thanksgiving already and then is the countdown.

Please

> > keep me in your prayers.

> >

> > Much Love,

> >

> > Jeannette

>

January 16, 2002

Joe:

I'm glad is doing much better . He'll be sucking down his

bottles again in no time!

Debbie Abby's mom DOCGrad

MI

> Thanks to everyone for the kind words and advice for . He's

doing

> much better, although we're still awaiting the return of his full

appetite.

> Aside from a lingering cough and the fact that he's lost 2 months

of weight

> gain (he's exactly the same weight he was at 4 mos now) he's doing

very

> well. Hopefully by Thursday he'll be able to go back to day care.

>

> He had a CT appt today, my wife took him. They gave her some

neck

> excercises to do, I guess seeing a bit of a 'crook' in his neck.

His pedi

> never noticed anything, but I suppose it can't hurt. He does seem

to favor

> looking to the right more than the left.

>

> Thanks to everyone again for their help!!!!

> --

> Joe O'Connor

> streams2oceans@w...

> Charlotte, NC USA

January 16, 2002

Joe,

I would ask your ped to take a closer look into tort. If one side of 's head is flat, it could be that tort is the cause and plagio is a secondary result. It's important to find out so that you can start physical therapy like CT showed you with exercises. See if has full rotation both ways, check where the flat spot is, and definitely have your ped look into it- I have talked with several parents that their ped did not dx tort until late in the game, much later than dx the plagio oddly enough. Please email me if you have questions about my son's tort or if I can help in any way!

Good luck!

' Mom

January 16, 2002

Joe,

Thanks for the update on and I'm glad to hear that he is feeling better

now.

Marci (mom to )

Oklahoma

January 16, 2002

Joe so glad your little lad is on the mend- I am sure the appetite will come

back in no time!

Beck

January 17, 2002

Joe,

What a relief to hear that is feeling better! Has he gotten his

appetite back yet? It really is the pits to see our babies sick,

isn't it? Once he's back to his good old self, I think you and your

wife have earned yourselves a date night!

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> Thanks to everyone for the kind words and advice for . He's

doing

> much better, although we're still awaiting the return of his full

appetite.

> Aside from a lingering cough and the fact that he's lost 2 months

of weight

> gain (he's exactly the same weight he was at 4 mos now) he's doing

very

> well. Hopefully by Thursday he'll be able to go back to day care.

>

> He had a CT appt today, my wife took him. They gave her some

neck

> excercises to do, I guess seeing a bit of a 'crook' in his neck.

His pedi

> never noticed anything, but I suppose it can't hurt. He does seem

to favor

> looking to the right more than the left.

>

> Thanks to everyone again for their help!!!!

> --

> Joe O'Connor

> streams2oceans@w...

> Charlotte, NC USA

January 26, 2002

Hello all

I hope you all are doing good. I have been trying to keep up with reading the

post but i don't always get to. Things around here are crazy again. We

started the new year out pretty mellow then got sick again ears were

bothering him. The school finally did the hearing screening on him and his

hearing is below normal so i took him to the ENT and he is now scheduled to

have tubes put in his ears and his adnoids removed. On the xray his adnoids

are bigger then a quater. He is scheduled for surgery on Feb. 7th.

I have to have a byopsy done on the 31st of this month. My last 2 pap smears

came back abnormal. Needless to say lots of crazy stuff has run through my

mind. Just trying not to worry to much about it.

Thursday jesse got clearence from the ortho dr about his foot. He said it

looks great. He will have soft tissue swelling and pain but the bone has

healed nicely. Now for the real bad news. Last night was at a friends

house playing and running around and he tripped over a root in the ground and

fell on his shoulder. Yep, he broke his collor bone right in two. He is in a

sling right now and Monday he will go see his ortho dr. I spoke with him when

we were at the hospital and he said to keep him in the sling over the

weekend. He said that if had to break a bone at least it was his collar

bone. He kinda chuckled cause we're all are greatful that is doing well

enough to break a bone playing. I know that sounds kind of strange but I

think you all understand what I mean. So much for him going back to school

Monday. I really don't think it would be good for him to go to school with a

broken collar bone. He can't even carry his back pack. I am going to get in

touch with his LD teacher this weekend so we can make arrangements for home

bound services.

well Iam off to my busy day. Ya'll take care and lots of love to you all

and

January 26, 2002

boy shelley, you sure have your hands always full. poor jesse, but i will

agree i'd rather have something bad happen while having fun. hang in there.

kathy in il

January 27, 2002

When it rains it pours...Hang in there . As the old saying goes; " This

too shall pass " . At least your sense of humor is still there. Hope does

well with his surgery. Also hope your biopsy comes back A-OK. I also go

Thursday, 31st for Doctor to check a knot in my left breast area where I've

already had a mastectomy. Sure makes you feel anxious.

Be blessed,

Becky

January 27, 2002

,

Poor ! I feel so bad for him. I hope he heals quickly without any

complications. I'll keep in my prayers as well as and you. I know

how worried you are about the biopsy results. Just when you were considering

having another child. Try not to worry to much.

a

Re: [ ]update