Update on Josh

July 12, 1999

I am so glade for you and Josh I live for those days when my daughter runs

around like a mad child and dosnt pay for it later I am also glad to here he

is handling 25mg so good my daughter had alot of leg pain today so I think

that going down to 8 wont be happening after all .Does living in a wormer

area help your son at all? last winter was hard on and it was a mild

winter here . well tell Josh to keep up the good work and to have fun on his

bike & Booke

>From: Georgina <gmckin@...>

>Reply- onelist

> < onelist>, stillsgroup

><stillsdisease@...>

>Subject: [ ] Update on Josh

>Date: Mon, 12 Jul 1999 14:41:30 -1000

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>From: Georgina <gmckin@...>

>

>Hi,

>

>Just figured I'd give a little update on . He's still feeling

>pretty darn good. Still's wise, at least. He caught a little cold the

>other day but it's not wearing him down much. Just lots of sniffles.

>Actually, I was pretty excited a couple of days ago when he decided out

>of the blue that he felt like riding his bike. It had been months and

>months! Both tires needed pumping first and then off he went! So he must

>be feeling pretty good :-) When we went to the beach last time, he had

>as much energy as me! He was catching waves on his boogie board, just

>like in the good old days. We had a great time. And he wasn't even sore

>the day after :-) So, all is well for now. We've decreased the

>prednisone to 25mgs a day. Hopefully, the next time we see the

>rheumatologist he'll be going down to 20mgs.

>

>He's still taking hydroxychloroquine, miacalcin, calcium, folic acid,

>indomethacin and MTX. We haven't started the injectable form of

>methotrexate yet. Still taking 15mgs orally every week. Have to set up

>the arrangements with his regular pediatrician, who should be calling me

>today or tomorrow. I've heard that a lot of people on this list inject

>MTX themselves but the doctors said since it was a controlled substance

>we'd have to go to the outpatient cancer clinic at Maui Memorial

>hospital once a week for them to do it. That's okay with me :-) And with

>Josh, too.

>

>Since the pediatrician is his primary care provider, I've left word with

>the nurse to find out if Josh's insurance will even consider paying for

>the human growth hormone treatments. Endocrinologist and rheumatologists

>feel it's a beneficial treatment to begin (even counteracts a lot of

>side effects of prednisone aside from lack of growth for 3+ years) but

>it's even more expensive than Enbrel is so if they won't pay for most of

>it I won't pursue it any further. I'll figure it just wasn't meant to

>be. He's already had some initial tests and the rheumatologist said the

>endocrinologist had ordered two more tests to be done with the last

>regular blood work but Josh still hasn't had the brain MRI done. Rheumy

>said a brain x ray would be just as good. But why bother, if it's

>unaffordable? Only time will tell.

>

>I have a little problem with the endocrinologist. I'd like to see if I

>can find one based here on my island instead of over in Oahu. I really

>dislike needing to wait so long before my calls are returned. And over a

>week ago he said he would send me some consent forms. Still haven't

>arrived. He's supposed to be really good but I don't like the way his

>office handles these sorts of things. Maybe there's a language barrier.

>His nurses and office people speak full Korean, Japanese, some Chinese

>and English. Maybe that's what slows things down? I don't really know.

>

>I'm just grateful that my son is happy and feeling well, at least for

>the time being. Wish everybody was...

>

>Much Aloha,

>Georgina

>

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

November 3, 1999

We were considering a bolus of steroids for Elliot at one point.

Our doctor has generally had good results with it,

and hasn't had bad adverse responses from it.

Good luck.

November 3, 1999

Hello everyone,

It seems we are all at different stages with our

children right now. I was sorry to hear what Josh (Georginas son ) has to go

through.... I don't think I really quite understand it though. was

admitted to the hospital in August because he had persistent vomiting and

they gave him iv pulse steroid therapy but he was there one night. He was so

sick I had to carry him in into the hospital.The next morning he woke up

fine, feeling great. I guess I didn't realize iv pulse steroid was more than

a one day treatment. I was amazed at how after a few hours on the IV how much

it helped him, it was unbelievable actually..He had to continue his daily

prednisone still. The Dr. mentioned at one time to us that we could have

hospitalized once a month for iv pulse therapy instead of the daily

prednisone. Did any of you drs ever mention that????? is still feeling

good, Nov 1 he went down to 8 mg of prednisone, its down 1 mg every month, We

tried the every other day but he had a flare immediatley.I am hoping as we

get lower on the dose he will start to grow, but the Dr. said the JRA itself

can stunt his growth..Every day I [pray this is the end of the JRA and maybe

it is burning itself out, we can all only hope and pray for that......Any one

else have any experience with pulse steroid therapy??? Wishing the best to

you all.. Jane (Georgina , hope Josh is feeling better soon, would it be

possible to get his address to send him a card in the hospital???)

November 3, 1999

did the pulse thing for 4 days at 30 X 1 mg per kg. Then every other

day for three weeks at home with a nurse coming. There were just 5 days in

the hospital. Then we did it again this summer when her liver started to

fail due to Indocin. She had the equivalent on 840 mg Prednisone every day

for three days then to 430 mg then down to 250 mg etc. She continued on

these high doses for about two weeks. It was all IV through her pick line.

Except for the first batch which were IV but they ran out of places to put

the needle so the Pick line worked out very well. Good luck Georgina.

November 4, 1999

I hope that all goes well for Josh. had it done in January she was

there for three days ,and was going to go back every weekend after that but

it went so well after the first paulse that she did not have to go back .she

was on the iv pump for three hours a day and the had to check her blood

preasure every 15 min that I think was the hardest part for her it was

makeing her arm hurt so they switched it to her leg that seemed to help well

good luck and I hopr it all workes out for Josh

>From: Georgina <gmckin@...>

>Reply- onelist

>a < onelist>,

><angelalevin@...>, Ann <ablodgett@...>, Barbara

><Dbkg6@...>, Brent <brent@...>, Cindi <winged_1_@...>,

>Heidi <Hirocash@...>, Heidi and Rob <sixofuscash@...>, Helge

>Heitmann <feynman@...>, Jeanette <jeanette@...>,

><MSiabala@...>, <SquireD@...>, Ras Levi

><peti@...>, Shirley <smapson@...>, stillsgroup

><stillsdisease@...>, Tracey <Americk@...>, Ursula

><UReingold@...>

>Subject: [ ] Update on Josh

>Date: Wed, 03 Nov 1999 15:41:27 -1000

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>From: Georgina <gmckin@...>

>

>Hi,

>

>I figured this might be a good time for an update on how Josh is doing

>these days. Well, as much as I had wanted to avoid needing to go this

>route we have finally reached the point where we need to go to the next

>step. It was first mentioned to us last year, so we've at least had

>plenty time to think about it. Tried to avoid it but we can't any

>longer. On Wednesday of next week, myself and will be flying over

>to Honolulu where he will be admitted to Shriner's Hospital for Crippled

>Children. The rheumatologists he sees are both located over there and

>are affliliated both with Shriner's and with Kapiolani Hospital, which

>is just down the street. They want to do a complete evaluation and they

>have lots of resources available there, that are not here on our island.

>They may need to start the IV Pulse Steroids treatment. I think Damien

>and Vivien have had this procedure done. Maybe others, here? If you have

>any helpful advice, it would be much appreciated :-) Those of you who

>knew us last year know that while I am not unhappy with the prospect of

>this treatment, which has been helpful for many children with long term,

>resistant-to-treatment Systemic JRA, I am a little bit stressed about

>needing to disrupt our household schedule in such a major way.

>

>I will fly over with Josh and help him get settled in and then in a

>couple days fly back home to be with Kayla. We will be in touch

>regularly by telephone and I hope to be able to visit with Josh, maybe

>weekly. His Dad says he will be able to visit almost every day. Still,

>it's a little bit upsetting to need to be seperated. I've always gone

>along with him, and stayed by his side, for medical related trips. I

>also don't want to disrupt Kayla's life, schooling and extracurricular

>activities too much, during this treatment. We are not sure yet when he

>will be able to come back home. They can't tell me when he'll be

>discharged, yet. It may be just a week, which would be great, or it

>could turn into several weeks, according to Dr. Kara. Maybe he'll be

>able to come home and just fly over for the continuing treatments,

>weekly or monthly, or however it works? A lot of question marks still. I

>wish they were able to do this locally, as the hospital in Maui is just

>10 minutes away from our home. Unfortunately not. I've just made the

>flight arrangements and set up care, at least for the first couple of

>days, for my daughter ... and our fish and birds and guinea pig and

>little kitten. We'll see how it all works out and I'll let you know.

>

>Today we also had our first visit, since 4 years ago, with the child

>psychologist I've mentioned in the past. He was a great help for the

>entire family when Josh first got out of the hospital after his initial

>arthritis flare. And he seems ready and willing to help once again :-) A

>lot of the same issues but in a little bit different light, and a couple

>new ones. Josh was only 6 the first time around and is able to verbalize

>a lot better these days. He's been a little depressed these past few

>weeks. Not majorly but you can tell he's got a lot on his mind. Also a

>little more irritable and not nearly as cheerful and sunny as he

>normally is. Sick of being sick. Tired of following all the rules about

>taking all his medicines and seeing the doctors all the time for shots

>and blood tests and doing his exercises and still waking up feeling

>miserable and being in pain on a lot of days, having a body that doesn't

>seem to want to cooperate. We had made arrangements for an hour every

>Wednesday morning but now that he'll be in the hospital, we're going to

>make a new plan when I find out more about the new schedule.

>

>Our friends have been very supportive, and Josh's friends and teachers

>too. Me and his sister are trying our best :-) His Dad has been touring

>but will be returning to the islands on the 9th, the day before we fly

>over, so he can join us. Together, I think we'll all be able to make the

>best of this situation. Josh is still doing okay ... it doesn't seem

>like there's been any major downhill turn, just lots of symptoms

>creeping back again, despite the meds. Hopefully, I'll be able to report

>that he's doing much better some time in the very near future.

>

>Well, I guess that's about all the news for now. I hope everyone is

>well.

>

>Aloha,

>Georgina

>

>>Visit my homepage for a list of sites with info on childhood arthritis:

>http://www.geocities.com/Heartland/Village/8414/

November 4, 1999

Georgina,

We will be thinking about Josh. Best of luck to him and your family.

Jana

November 5, 1999

I have never even heard of an iv pulse, and Mandy is 12! Is it because she

has polyarticular, and not systemic? She is not on any steroids. Janet

Re: [ ] Update on Josh

> From: Jitz45@...

>

> Hello everyone,

> It seems we are all at different stages with our

> children right now. I was sorry to hear what Josh (Georginas son ) has to

go

> through.... I don't think I really quite understand it though. was

> admitted to the hospital in August because he had persistent vomiting and

> they gave him iv pulse steroid therapy but he was there one night. He was

so

> sick I had to carry him in into the hospital.The next morning he woke up

> fine, feeling great. I guess I didn't realize iv pulse steroid was more

than

> a one day treatment. I was amazed at how after a few hours on the IV how

much

> it helped him, it was unbelievable actually..He had to continue his daily

> prednisone still. The Dr. mentioned at one time to us that we could have

> hospitalized once a month for iv pulse therapy instead of the daily

> prednisone. Did any of you drs ever mention that????? is still feeling

> good, Nov 1 he went down to 8 mg of prednisone, its down 1 mg every month,

We

> tried the every other day but he had a flare immediatley.I am hoping as we

> get lower on the dose he will start to grow, but the Dr. said the JRA

itself

> can stunt his growth..Every day I [pray this is the end of the JRA and

maybe

> it is burning itself out, we can all only hope and pray for that......Any

one

> else have any experience with pulse steroid therapy??? Wishing the best

to

> you all.. Jane (Georgina , hope Josh is feeling better soon, would it be

> possible to get his address to send him a card in the hospital???)

>

> > Visit my homepage for a list of sites with info on childhood arthritis:

> http://www.geocities.com/Heartland/Village/8414/

November 5, 1999

Hi Charlie and ,

Thanks for letting me know. I guess this is a somewhat common procedure?

Makes me feel a little more comfortable about it. I think Josh is

getting used to the idea, too.

Thanks,

Georgina

November 5, 1999

Hi Jane,

Yup. Steroids seem to work miracles, a lot of the time. I sure hope it's

able to stop this current episode and get Josh back on track again. The

dr did say that we might be able to lower Josh's oral steroids after

this, but that he'd still need to take them daily. If it could be pulsed

once a month and we could discontinue daily prednisone ... I'd go for

that. It hasn't been mentioned as an option but I'll ask about that when

we go next week. What I'd really love to hear is that after they try

this out, the rheumatologists can give instructions to the pediatrician

and he can do any needed follow up treatments right here in Maui. Maybe

that's just wishful thinking but it doesn't seem like it would be too

much of a problem.

I'm so glad is still doing good. Even as he's decreasing. Maybe

this will be the last of it. There is always that chance of them going

into remission. A light at the end of the tunnel :-)

Take care,

Georgina

PS ... Once Josh is settled in there I will get the address. I'll post

it to you. That's so thoughtful, to want to send him a card there! I'm

sure that would help cheer him up. I'm still hoping it won't be a very

long stay but just in case ...

Jitz45@... wrote:

> Hello everyone,

> It seems we are all at different stages with our

> children right now. I was sorry to hear what Josh (Georginas son ) has to go

> through.... I don't think I really quite understand it though. was

> admitted to the hospital in August because he had persistent vomiting and

> they gave him iv pulse steroid therapy but he was there one night. He was so

> sick I had to carry him in into the hospital.The next morning he woke up

> fine, feeling great. I guess I didn't realize iv pulse steroid was more than

> a one day treatment. I was amazed at how after a few hours on the IV how much

> it helped him, it was unbelievable actually..He had to continue his daily

> prednisone still. The Dr. mentioned at one time to us that we could have

> hospitalized once a month for iv pulse therapy instead of the daily

> prednisone. Did any of you drs ever mention that????? is still feeling

> good, Nov 1 he went down to 8 mg of prednisone, its down 1 mg every month, We

> tried the every other day but he had a flare immediatley.I am hoping as we

> get lower on the dose he will start to grow, but the Dr. said the JRA itself

> can stunt his growth..Every day I [pray this is the end of the JRA and maybe

> it is burning itself out, we can all only hope and pray for that......Any one

> else have any experience with pulse steroid therapy??? Wishing the best to

> you all.. Jane (Georgina , hope Josh is feeling better soon, would it be

> possible to get his address to send him a card in the hospital???)

November 5, 1999

Dear Georgina:

I hope everything is starting to lookup with Josh. I am sorry he has been

feeling bad lately. I wish there was something I could doto make his aches and

pains go away for every time I see a child that is going through such rough

time, it really breaks my heart. It sounds like you are going to be very busy

for several weeks, please hang in there. From what I know of you, you have such

positive attitude and are such a trong person and I am sure you will pull this

one with no problem. I keep you and Josh and the rest of your family in my

prayers. God bless your hearts.

November 8, 1999

Hi ,

Thanks so much for telling us about 's experience with pulsing the

steroids. Wow! Imagine if Josh responds just as well, and it doesn't

need to be a regularly scheduled type thing! That would be terrific.

I've told Josh about how they switched the cuff to 's leg when it

bothered her, so he can tell them to try that if it bothers him. Thanks!

Take care,

Georgina

> From: " SHANNON MARTINO " <shancna@...>

>

> I hope that all goes well for Josh. had it done in January she was

> there for three days ,and was going to go back every weekend after that but

> it went so well after the first paulse that she did not have to go back .she

> was on the iv pump for three hours a day and the had to check her blood

> preasure every 15 min that I think was the hardest part for her it was

> makeing her arm hurt so they switched it to her leg that seemed to help well

> good luck and I hope it all workes out for Josh

> >Hi,

> >

> >I figured this might be a good time for an update on how Josh is doing

> >these days. Well, as much as I had wanted to avoid needing to go this

> >route we have finally reached the point where we need to go to the next

> >step. It was first mentioned to us last year, so we've at least had

> >plenty time to think about it. Tried to avoid it but we can't any

> >longer. On Wednesday of next week, myself and will be flying over

> >to Honolulu where he will be admitted to Shriner's Hospital for Crippled

> >Children. The rheumatologists he sees are both located over there and

> >are affiliated both with Shriner's and with Kapiolani Hospital, which

> >is just down the street. They want to do a complete evaluation and they

> >have lots of resources available there, that are not here on our island.

> >They may need to start the IV Pulse Steroids treatment. I think Damien

> >and Vivien have had this procedure done. Maybe others, here? If you have

> >any helpful advice, it would be much appreciated :-) Those of you who

> >knew us last year know that while I am not unhappy with the prospect of

> >this treatment, which has been helpful for many children with long term,

> >resistant-to-treatment Systemic JRA, I am a little bit stressed about

> >needing to disrupt our household schedule in such a major way.

> >

> >I will fly over with Josh and help him get settled in and then in a

> >couple days fly back home to be with Kayla. We will be in touch

> >regularly by telephone and I hope to be able to visit with Josh, maybe

> >weekly. His Dad says he will be able to visit almost every day. Still,

> >it's a little bit upsetting to need to be seperated. I've always gone

> >along with him, and stayed by his side, for medical related trips. I

> >also don't want to disrupt Kayla's life, schooling and extracurricular

> >activities too much, during this treatment. We are not sure yet when he

> >will be able to come back home. They can't tell me when he'll be

> >discharged, yet. It may be just a week, which would be great, or it

> >could turn into several weeks, according to Dr. Kara. Maybe he'll be

> >able to come home and just fly over for the continuing treatments,

> >weekly or monthly, or however it works? A lot of question marks still. I

> >wish they were able to do this locally, as the hospital in Maui is just

> >10 minutes away from our home. Unfortunately not. I've just made the

> >flight arrangements and set up care, at least for the first couple of

> >days, for my daughter ... and our fish and birds and guinea pig and

> >little kitten. We'll see how it all works out and I'll let you know.

> >

> >Today we also had our first visit, since 4 years ago, with the child

> >psychologist I've mentioned in the past. He was a great help for the

> >entire family when Josh first got out of the hospital after his initial

> >arthritis flare. And he seems ready and willing to help once again :-) A

> >lot of the same issues but in a little bit different light, and a couple

> >new ones. Josh was only 6 the first time around and is able to verbalize

> >a lot better these days. He's been a little depressed these past few

> >weeks. Not majorly but you can tell he's got a lot on his mind. Also a

> >little more irritable and not nearly as cheerful and sunny as he

> >normally is. Sick of being sick. Tired of following all the rules about

> >taking all his medicines and seeing the doctors all the time for shots

> >and blood tests and doing his exercises and still waking up feeling

> >miserable and being in pain on a lot of days, having a body that doesn't

> >seem to want to cooperate. We had made arrangements for an hour every

> >Wednesday morning but now that he'll be in the hospital, we're going to

> >make a new plan when I find out more about the new schedule.

> >

> >Our friends have been very supportive, and Josh's friends and teachers

> >too. Me and his sister are trying our best :-) His Dad has been touring

> >but will be returning to the islands on the 9th, the day before we fly

> >over, so he can join us. Together, I think we'll all be able to make the

> >best of this situation. Josh is still doing okay ... it doesn't seem

> >like there's been any major downhill turn, just lots of symptoms

> >creeping back again, despite the meds. Hopefully, I'll be able to report

> >that he's doing much better some time in the very near future.

> >

> >Well, I guess that's about all the news for now. I hope everyone is

> >well.

> >

> >Aloha,

> >Georgina

November 9, 1999

Hello,

I just wanted to say thank you to everyone who sent encouraging notes

and shared words of kindness. It really did help, a lot. Josh and I read

many of the messages together and he doesn't seem quite so nervous

anymore. I think I still am though but I'm not telling :-) I heard that

some of the stills members tried to get in touch. I'm not on the list at

this time, so I wasn't able to read messages you sent unless they went

thru my personal email, but it's the thought that counts :-) Thank you!

Tomorrow is the big day. We're flying off island at 8:30am. I just got

off the phone with the admissions coordinator and she said to plan for

about a week. That's less than what Dr. Kara told me so I guess we'll

just have to take it one day at a time and see how it goes. If it will

only be for one week, I may try to stay over. So you may not see

messages from me in the next few days but I'll get back in touch once

home.

Many of you had mentioned wanting to send a card while Josh is in the

hospital.

That's really nice of you. And I'm sure that would help cheer him up!

The address is as follows:

Forde

c/o Shriner's Hospital For Children

1310 Punahou Street

Honolulu, Hawaii

96826 USA

Well, I'm still busy with last minute preparations. So I won't stay on

the computer long. Just wanted to say thank you to all of you, for

making this difficult time a little bit easier for our family. I'm so

glad that you are a part of our lives.

Much Love and Aloha,

Georgina

November 10, 1999

Good luck and all the best.

Ady Ogilvie

M-Net Marketing

aogilvie@...

> [ ] re: Update on Josh

>

> From: Georgina <gmckin@...>

>

> Hello,

>

> I just wanted to say thank you to everyone who sent encouraging notes

> and shared words of kindness. It really did help, a lot. Josh and I read

> many of the messages together and he doesn't seem quite so nervous

> anymore. I think I still am though but I'm not telling :-) I heard that

> some of the stills members tried to get in touch. I'm not on the list at

> this time, so I wasn't able to read messages you sent unless they went

> thru my personal email, but it's the thought that counts :-) Thank you!

>

> Tomorrow is the big day. We're flying off island at 8:30am. I just got

> off the phone with the admissions coordinator and she said to plan for

> about a week. That's less than what Dr. Kara told me so I guess we'll

> just have to take it one day at a time and see how it goes. If it will

> only be for one week, I may try to stay over. So you may not see

> messages from me in the next few days but I'll get back in touch once

> home.

>

> Many of you had mentioned wanting to send a card while Josh is in the

> hospital.

> That's really nice of you. And I'm sure that would help cheer him up!

> The address is as follows:

>

> Forde

> c/o Shriner's Hospital For Children

> 1310 Punahou Street

> Honolulu, Hawaii

> 96826 USA

>

> Well, I'm still busy with last minute preparations. So I won't stay on

> the computer long. Just wanted to say thank you to all of you, for

> making this difficult time a little bit easier for our family. I'm so

> glad that you are a part of our lives.

>

> Much Love and Aloha,

> Georgina

>

> > Visit my homepage for a list of sites with info on childhood arthritis:

> http://www.geocities.com/Heartland/Village/8414/

July 3, 2002

Jeanne -

Just wanted to let you know that my youngest son, Riley is allergic

to peanuts, too. I give him the soy nut butter. It's taste is

almost indistinguishable from peanut butter. I actually don't give

it to him as he won't eat it (not uncommon that the allergic think

the taste and smell is disgusting) but I do give it to my older son

(not allergic). Anyhoo - just an FYI. Is your son anaphalactic? If

so, try going to the FAAN site as they have great info.

good luck!

Marina

> hi all,

> I just wanted to let everyone know that josh has alot allergies

indoor and

> out and is on zyrtec. He still throws up sometimes and it is very

hard

> because it isn't always easy to pinpoint what caused it, it isn't

always

> consistant. Sometimes I think he eats too much, of what foods he

does eat. We

> went to an Ent because he was never checked out.(thank you dr agin)

because

> of his delayed speech we wanted to re check his hearing and tonsils

and

> adnoids. The good news it that his adnoids are normal, but his

tonsils are

> large. The ent said to wait on the tonsils because he didn't think

there was

> a problem yet with them. The allergist said josh is allergic to

peanuts. So

> I tried giving him cashew butter in stead with jam. It worked to a

few days

> now he won't even try it. So I bought some stage 2 baby plain

veggies and

> fruit to try and get some more variety into him. He gagged on the

1/2 tsp on

> butternut squash and wouldn't try the carrots. Oh well... Have a

happy 4th

> everyone!

> Jeanne Buesser

> President Apraxia Network of Bergen County

> Outreach Coord to Cherab

> www.apraxia.cc

October 24, 2002

Hi, everyone -

Thought I'd give just a little update on Josh since starting the

supplements July 27 of this year. We noticed an almost immediate

increase in the amount of attempts to talk, mimicking our sounds

increased, and now more words are coming everyday. Before we started

the supplements, Josh used " bababa " for everything with the

occasional word thrown in - " tak du, " " mau " (more), some more that I

can't think of right at the moment. Now, he has added probably 25-30

words - sometimes with a juicy " s, " sometimes with a " th " instead of

a " t, " but he's coming up with new words all the time. He is losing

some of the ways that he said things before but he is replacing them

with attempts at more appropriate sounds for a word (like this

morning, he asked for more applesauce - he had been saying " mau thau "

but this morning he said " mau saut " - hhhmmm). We were outside

waiting for the bus and we heard a train in the distance - he looked

at me and, without my prompting and for the first time that I've

heard, said " thra (long a sound) " and then " choo, choo. " His

teachers are seeing a great increase in his word approximations and

are very, very pleased with the progress.

He has also come a long way with the sensory issues - something I

don't know if connected with the supplements or just the sensory

bombardment we all do. He is using a pincer grasp almost

consistently now. The weather changed here in Illinois (winter is

almost upon us!) and he's actually wearing a hat for the first time

without my almost having to glue it down on his head! This morning

was " wacky hat " day at school - amazingly he wore my DH's jester hat

(multi-colored with pointy things with bells attached and a " dragon's

tail " down the back with bells attached) - he looked so cute! And it

stayed on his head without a fight!

Most importantly, his teachers are realizing that they have,

perhaps, been underestimating his cognitive abilities - something

I've been telling people for a very long time now. Josh's OT met

with me on the fly yesterday. She said the lead teacher in his

developmental preschool class asked her to develop something that

Josh can use as a pointer since he doesn't have a good " pointer

finger " (he uses his whole hand to point to something and can't seem

to get that finger out in front!) - not pointing limits his ability

to identify things on the " testing " they do and will limit the type

of computer adaptation they want to get going for him. The OT saw

that Josh likes to play with the peg game (put the pegs in different

size holes, different colors, etc.). She handed Josh the peg and,

with the speech therapis standing there, asked Josh to point to the

picture of the dog - did it no problem, then point to the picture of

the fire engine - did it no problem - he did all the pointing, with

the peg, that the OT and SLT asked him to do - DUH!!! The OT told me

that the lead teacher, especially after this, made the comment that

Josh is so far ahead of the others in the class and he has so much

more potential if we can just unlock a couple more doors - made me

cry! It's about time!!

The lead teacher sent a note home the other day that the hitting

thing is even getting to be inconsistent. Unfortunately, she also

made the observation that sometimes the hitting seems to be

unprovoked. I wrote back that I didn't think I was being an overly

protective or biased mom but I can't believe Josh would hit for

absolutely no reason. I told her some observations that I made

watching him at daycare - there are some kids there that occasionally

tease him about his speech, that he wears a pull-up at nap time, and

that he uses different cup, plate, and spoon at lunch (and the

teachers there don't do anything about the teasing - makes me

nuts!). Josh doesn't react at the moment of the teasing but, sure

enough, he'll be walking over to put his spoon and cup in the dirty

dishes and he'll smack the kid in the head. I told the preschool

teacher that it is an admittedly sophisticated concept but isn't it

interesting and curious. Josh's OT has observed similar things with

kids that may take toys away from Josh - he doesn't react at the

moment but hits the kid later on. It may be that the teachers don't

see or hear or even understand the provocation (especially when

you're dealing with a 4-year-old - who knows what can set them off?),

but I am convinced it is always there. Doesn't make it right, by any

means, but can make it easier to deal with in terms of teaching him a

different, more appropriate reaction to teasing.

Sorry this went on so long. There's tons more to write but I'll

save it for another time. I hope others are having as great an

experience as we are with the supplements and all the therapies -

three years worth and counting! We all know how difficult things can

be but it's moments like this morning - with the hat and " choo,

choo " - that seem to make up for all of it!

Have a great day, everyone!

Sherry, , (typical 15-year-old), and (4 and

trying very, very hard!)

October 24, 2002

Sherry an excellent point -and you too are 100% correct in pointing

this out to remind us that yes - hearing is the first impairment that

should be ruled out for any late talker!

I loved reading 's update -and I know just how you feel.

When I just wrote how the old pictures of Tanner bring tears to my

eyes -it's because I now know that EFAs in some way helped to cure

some of Tanner's oral and verbal apraxia, sensory integration

problems, and with his motor planning in general. (I'm not sure if

it helped with his mild hypotonia -he still has that -but according

to the study by Dr. ez http://www.momtahan.com/mmartinez/ it does

help with that too.)

Of course the frequent and intensive appropriate therapy and the

therapists were important as well -however as Tanner's story states

in The LCP Solution book http://www.drstordy.com/stories.html and as

Tanner's first Early Intervention therapist the much loved

Zimet MA CCC/SLP who is now in Georgia and still in our group knows -

improvements and regressions were after months of no change with

therapy -and then while continuing therapy. ( was in there

for unfortunately only about 6 weeks -right before Tanner turned

three -but the good part was that she got to witness and document

all is factual!)

Like , somehow the EFAs helped Tanner to suddenly do what the

therapists were trying to help with. I just wish that like (from

CHERABofOhio) just stated -I knew about it when Tanner was a baby -

when he first regressed when he was 11 months old so I could have

started him on them then. I probably then would never have started

CHERAB because I believe he like other apraxic children started

young as posted here and from what I've seen from our group -like

's baby who was also showing early signs of apraxia as well -

would start talking and blend in fine. Tanner started EFAs right

before 3 years old. You can hear Tanner after 8 months of EFA

supplementation, at 3 1/2 years old here

http://www.debtsmart.com/talk/tanner.html That was amazing coming

from a child that on his Early Intervention report at 2 years 10

months -our 6 week goal was for him to " look at a ball and say " ba "

because all he would say was " mmm " with no facial expression after 4

months of (private out of pocket through a hospital) speech therapy 1/1 two to

three

times a week! EFAs are essential!

(and like Lorenzo's father I don't require any clinical studies to

prove it to me even though I appreciate that's needed for most of the rest

of the world to help the children)

=====

October 24, 2002

Sherry,

What supplements does your son take ??

Thanks,

[ ] Update on Josh

> Hi, everyone -

> Thought I'd give just a little update on Josh since starting the

> supplements July 27 of this year. We noticed an almost immediate

> increase in the amount of attempts to talk, mimicking our sounds

> increased, and now more words are coming everyday. Before we started

> the supplements, Josh used " bababa " for everything with the

> occasional word thrown in - " tak du, " " mau " (more), some more that I

> can't think of right at the moment. Now, he has added probably 25-30

> words - sometimes with a juicy " s, " sometimes with a " th " instead of

> a " t, " but he's coming up with new words all the time. He is losing

> some of the ways that he said things before but he is replacing them

> with attempts at more appropriate sounds for a word (like this

> morning, he asked for more applesauce - he had been saying " mau thau "

> but this morning he said " mau saut " - hhhmmm). We were outside

> waiting for the bus and we heard a train in the distance - he looked

> at me and, without my prompting and for the first time that I've

> heard, said " thra (long a sound) " and then " choo, choo. " His

> teachers are seeing a great increase in his word approximations and

> are very, very pleased with the progress.

> He has also come a long way with the sensory issues - something I

> don't know if connected with the supplements or just the sensory

> bombardment we all do. He is using a pincer grasp almost

> consistently now. The weather changed here in Illinois (winter is

> almost upon us!) and he's actually wearing a hat for the first time

> without my almost having to glue it down on his head! This morning

> was " wacky hat " day at school - amazingly he wore my DH's jester hat

> (multi-colored with pointy things with bells attached and a " dragon's

> tail " down the back with bells attached) - he looked so cute! And it

> stayed on his head without a fight!

> Most importantly, his teachers are realizing that they have,

> perhaps, been underestimating his cognitive abilities - something

> I've been telling people for a very long time now. Josh's OT met

> with me on the fly yesterday. She said the lead teacher in his

> developmental preschool class asked her to develop something that

> Josh can use as a pointer since he doesn't have a good " pointer

> finger " (he uses his whole hand to point to something and can't seem

> to get that finger out in front!) - not pointing limits his ability

> to identify things on the " testing " they do and will limit the type

> of computer adaptation they want to get going for him. The OT saw

> that Josh likes to play with the peg game (put the pegs in different

> size holes, different colors, etc.). She handed Josh the peg and,

> with the speech therapis standing there, asked Josh to point to the

> picture of the dog - did it no problem, then point to the picture of

> the fire engine - did it no problem - he did all the pointing, with

> the peg, that the OT and SLT asked him to do - DUH!!! The OT told me

> that the lead teacher, especially after this, made the comment that

> Josh is so far ahead of the others in the class and he has so much

> more potential if we can just unlock a couple more doors - made me

> cry! It's about time!!

> The lead teacher sent a note home the other day that the hitting

> thing is even getting to be inconsistent. Unfortunately, she also

> made the observation that sometimes the hitting seems to be

> unprovoked. I wrote back that I didn't think I was being an overly

> protective or biased mom but I can't believe Josh would hit for

> absolutely no reason. I told her some observations that I made

> watching him at daycare - there are some kids there that occasionally

> tease him about his speech, that he wears a pull-up at nap time, and

> that he uses different cup, plate, and spoon at lunch (and the

> teachers there don't do anything about the teasing - makes me

> nuts!). Josh doesn't react at the moment of the teasing but, sure

> enough, he'll be walking over to put his spoon and cup in the dirty

> dishes and he'll smack the kid in the head. I told the preschool

> teacher that it is an admittedly sophisticated concept but isn't it

> interesting and curious. Josh's OT has observed similar things with

> kids that may take toys away from Josh - he doesn't react at the

> moment but hits the kid later on. It may be that the teachers don't

> see or hear or even understand the provocation (especially when

> you're dealing with a 4-year-old - who knows what can set them off?),

> but I am convinced it is always there. Doesn't make it right, by any

> means, but can make it easier to deal with in terms of teaching him a

> different, more appropriate reaction to teasing.

> Sorry this went on so long. There's tons more to write but I'll

> save it for another time. I hope others are having as great an

> experience as we are with the supplements and all the therapies -

> three years worth and counting! We all know how difficult things can

> be but it's moments like this morning - with the hat and " choo,

> choo " - that seem to make up for all of it!

> Have a great day, everyone!

>

> Sherry, , (typical 15-year-old), and (4 and

> trying very, very hard!)

October 25, 2002

Sherry,

I am so happy to hear about Josh's progress! Evan is doing well too, but I need

some of your glue to get a coat on him! Winter should be fun with that little

issue! Thanks for the update...always nice to hear good reports!

Jody

August 25, 2003

Hi ,

Thanks. Will do He's been doing so well in recent months. I'd really

hate to see a re-occurrence of the way things used to be. He's been

feeling so confident and secure ... and a flare might really set him

back. But you know how that goes.

Take Care,

Georgina

wrote:

> DEar Georgine,

>

> Please send Josh all our love & encouragement.

> Skylers oldest sister is a sophmore now and I

> know how different a step this can be.

>

> Blessings & comfort,

>

> [ & Skyler, 5 Stills]

August 28, 2003

Hi Georgina & everyone!

I am glad to hear that Josh is doing better, I had tears in my eyes reading

about Josh's first day of school. I am glad that he enjoyed the camp and that

it seems like he just needed some rest.

I have had some problems with my computer at work and at home, and work

continues to be crazy - but I have been trying to read the posts when I get the

chance. I seem to remember a post from you before that I wanted to respond to -

but it has been deleted from my email and I can't remember what it was about.

Robbie is in his 3rd day today in 1st grade. He is in a new school, new

principle (but the school nurse works at both schools in the town, so she is

familiar with Robbie and his history - she has assistants at both schools -

hopefully Robbie won't get to know the one at this school as well as the one at

the last.)and bigger building. He even has a locker in the hallway outside his

room! I was amazed - lockers in first grade? He likes his teacher. I sent a

note to her in his backpack the first day, along with a couple of the Arthritis

Foundation flyers (When you Student has Arthritis and Arthritis in Children) -

and told Robbie to give it to her - so naturally it was still in his backpack

with all the extra papers for me to fill out when he came home the first day!

( " Mom, I forgot " ) But he delivered it yesterday. Last night he had his first

episode of homework tears - he got in too big a hurry and made a couple of

mistakes. I thought: tears, already? I told Robbie that he could fix the

mistakes, but he was bothered because he couldn't erase them and they would show

(colored too many objects in a line - got carried away.) I told him he was doing

a good job, and that he would do better next time & that his teacher would know

he and all the other kids have to get back in the swing of things with school.

Yikes! I don't know if I am ready for first grade! , Robbie only had one

crying episode last year with his Kindergarden homework. But then, I told him

he was obviously tired and frustrated and could finish it the next day, because

the homework notebook was only turned in once a month - last nights homework had

to be turned in today. But I did let him take a break and finish it later. Now

my work commute is on my mind. The earliest I can leave work is 4:30 - which

gets me to the school to pick him up from after care sometime between 5:30 and

6:00 - depending on the traffic. That leaves him very little time for dinner,

bath, and homework not to mention any " free " time before bed. Whew. So much

for doing homework when you aren't overtired. Boy, did I go on about that, or

what. Feeling kind of guilty, I guess.

Robbie is continuing to do well with his taper, we are down to 3mg of the

Prelone now. Tapering .5mg every two weeks. I am trying not to worry - but

after last winter, I don't feel as optimistic about the continued progress as I

did this time last year. I try not to think about it, and I keep telling myself

that we have tripled his Cyclosporine since last year - but who knows if that

will work on it's own? As the dose got smaller as school approached, I finally

had to look at the calendar and see where we will be later in the year if we

continue tapering at the same rate - and he will be at .5mg around Oct 10, a

month to the day earlier than when he flared last November. Didn't make me feel

any better to know. He is doing well, but his appetite is bad and he looks thin

- which was true before every big flare. But an active summer and low steriods

explain a lot of that away....

Enough of my rambling now. I hope Josh continues to do well, as well as all of

the other kids on this group. Thanks for letting me ramble.

Val

Rob's Mom (5,systemic)

In a message dated 8/26/2003 7:02:28 PM Eastern Daylight Time, gmckin@...

writes:

>

> Hi Michele,

>

> Thanks for your positive thoughts. So far, I guess everything is fine.

> He probably just needed some extra rest, after a few very busy days. I

> should have known that. I don't know why I worry, still, even when it's

> just small things. I hope is doing alright these days?

>

> Aloha,

> Georgina

>

> Tepper, Michele wrote:

> > Hi, Georgina. Hope Josh is just feeling the effects of camp and getting

> > the rest he needs. Not starting a flare. Like you say, stress can bring

> > one on and starting school is definitely a stressor! Perhaps with the

> > extra sleep his body is trying to take care of itself? Hope today is a

> > better one! Michele (16,pauci & spondy)

> >

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

> > From: Georgina [mailto:gmckin@...]

>

> > That's good, that Rob's teacher phoned you. Always good to keep the

> > lines of communication open between home and school. I hope all of

> > 's teachers will feel free (and be inclined) to stay in touch,

> > too. I hope Rob is alright? With so much going on, it's no wonder he was

> > feeling stressed out. I guess I'll have to wait and see. Today is Josh's

> > first 'real' day at school ...

>

> To leave this mailing list, send request to:

> -unsubscribe

>

September 3, 2003

Hi Val,

Great to see a message from you! I know how incredibly busy life can get

sometimes (most times?) but you know how it is. We start thinking about

someone, wondering how they're doing, and then it's great when we do get

an update. I can't believe your little guy is a first grader already!

They mature so quickly. And having his own locker already ... wow! I

hope the adjustment continues to go smoothly. The steroid tapering

schedule, too. I do know exactly what you mean though, about not feeling

quite so optimistic on the next go-round. It's normal to be concerned

about another flare up, after your last experience. Hopefully Robbie is

strong enough now, and the other meds are helping to compensate, and

this time around he'll do just fine. I'll be looking forward to hearing

from you around the 10th of October ... just to find out how everything

is. Okay? Good

With Love and Aloha,

Georgina

carneyval@... wrote:

> Hi Georgina & everyone!

>

> I am glad to hear that Josh is doing better, I had tears in my eyes reading

about Josh's first day of school. I am glad that he enjoyed the camp and that

it seems like he just needed some rest.

>

> I have had some problems with my computer at work and at home, and work

continues to be crazy - but I have been trying to read the posts when I get the

chance. I seem to remember a post from you before that I wanted to respond to -

but it has been deleted from my email and I can't remember what it was about.

>

> Robbie is in his 3rd day today in 1st grade. He is in a new school, new