Update.

[Guest guest]

> I wanted to give an update on my son. He has been on enzymes for

> breakfast and dinner. I was not able to give at school. Finally, i

> got the letter and gave it to the school on friday. Our son is

> gfcfsf. On friday, maybe i was not very clear.. the school teacher

> gave him regular crackers with frosting and about 3 cups of milk. I

> went in to pick him up and saw him eating. I was shocked but

thought

> that it would be an experiment. She had given the enzymes 1pep and

> 1zymeprime before snack.

Did she mention when she gave the enzymes? I'm wondering if she gave

them 30 minutes before the snack. (I put a label on both of the

bottles (and highlighted it) to be sure that they remember this

important info. I also brought a timer to school so that they could

set it first thing in the morning to go off 1/2 hr. before snack,

lunch).

You mentioned a letter. If the letter doesn't have instructions, I

would type up or e-mail instructions to the teacher, including

instructions for a normal day and also for emergencies (i.e., if they

forgot to give the enzymes and now it is time to eat).

The three cups of milk shocks me! That is a lot of milk! I don't

remember how long your son has been gfcf, but it is possible that he

doesn't have as much lactase (enzyme that digests milk sugar) as he

used to. ( Seroussi mentioned in her book that after her son

was gfcf for 3 years that a test showed that he had zero ability to

digest lactose.) So, I'm wondering if your son needs more of

whichever bottle has lactase (I don't have the bottles here at my

computer).

In a week or two, I would do another test, this time a planned one

(LOL) that you control the timing and the amounts of food.

Oh, one more thing. Since I never know what the school lunch is, I

told the teachers to give my daughter two of each enzyme before

lunch, and one of each before snack. At home, I adjust what I give

her more based on the meal content (i.e., with spaghetti or ice cream

I'd give two pep plus 1 ZP but most of the time I just give one of

each enzyme with a meal.) I don't actually know if she needs this, I

just do it to make me feel better! lol

He seems

> more engaged to us parents, but at school we are getting mixed

> opinion. Some teacher see no difference. His OT thinks he is more

> engaged now.

Check with the teacher again after they are using enzymes

consistently at school.

Best of luck!

Carolyn

[Guest guest]

I thought the same thing as Carolyn, only she wrote it up better,

lol.

1. The timing is important if he swallows capsules and that seemed

like a LOT of milk all at once.

2. That is a good point about the lactose. Zyme Prime has the lactase

for the milk sugar, and Peptizyde has the protease for the milk

protein.

3. Another thing is that milk is a high phenol, and if he is

sensitive to phenols or has been on a low phenol diet, that could

really send him for a loop. Milk has several other possibilities

besides the casein. Your idea of trying the cheese pizza would be a

better test, if that is what you want to do. Or do a milk challenge

under better mommy-controlled conditions. Our biggest food problems

are usually at school. Hope he is doing better today.

.

[Guest guest]

With that much milk, a higher dosing of enzymes would have been more

appropriate, and could have decreased the reactions even further.

Devin

> I wanted to give an update on my son. He has been on enzymes for

> breakfast and dinner. I was not able to give at school. Finally, i

> got the letter and gave it to the school on friday. Our son is

> gfcfsf. On friday, maybe i was not very clear.. the school teacher

> gave him regular crackers with frosting and about 3 cups of milk. I

> went in to pick him up and saw him eating. I was shocked but

thought

> that it would be an experiment. She had given the enzymes 1pep and

> 1zymeprime before snack. He was okay for about half an hour and

then

> he became very whiny and non-compliant - literally cried if asked

to

> do anything. This was very clear. He was like that until saturday

> afternoon. He is better , but not totally.

> So, even with enzymes, our son is not able to tolerate casien.

> Is cheese better - less problematic than milk?

> He has a pajama party where he is to have pizza tomorrow.

>

> It has been almost 5 weeks since we started the enzymes. He seems

> more engaged to us parents, but at school we are getting mixed

> opinion. Some teacher see no difference. His OT thinks he is more

> engaged now.

>

>

> Thanks

[Guest guest]

Hi, Helen. I would keep track of the episode and any reoccurrences. The

dr does need to know about it - if it happens again soon, you might want

to put in a call and the dr can determine if he needs to be seen sooner.

Is Naprosyn all he is on right now? If so, and if he has more episodes,

he may need a DMARD which could help, then you could taper the NSAID.

I know you said that has a " mild " case, but really this is a

chronic illness. Some kids have more joints affected at any given time,

or more incidence of fever, but it is still something that is serious.

You are not over - reacting if you call out of concern and hopefully

your dr will not treat you like you are. Your child has an illness that

can affect may aspects of his life. And yes, it very definitely can

clear up or get worse - there really is no telling. Unfortunately. If,

for example, he catches a cold, it could cause him to have pain, even

though he has been pain free for awhile. This happened recently with my

son. He was off his Celebrex, down to 7.5mgs of MTX, and then his

allergies flared up badly, and he got an ear infection. That has caused

his back pain to come back and his morning stiffness, so he is back up

on his MTX and now taking some Celebrex again. It is quite a roller

coaster. Sometimes we all worry about looking like an overprotective

parent that we don't call when we should. I know I have done that quite

a few times. Just recently, I wasn't going to call on Chris' allergies

and not feeling well, then decided I might as well. We get in to the

peds office and they're like, His ear drum is ready to burst, the

infection is so bad! Of course, I felt like the Mother of the Year -

not! Anyway, trust your instincts and do what you think is best for your

son. That is all any of us can do! Hope this helps, Michele

(16,pauci & spondy)

From: hburger64 [mailto:hburger64@...]

Sent: Saturday, October 11, 2003 7:25 AM

Subject: Update.

Hi all,

Well, i was getting ready to send a good news report myself the

other day. was doing wonderfully. Hes such a different

child from the one back in the spring. I was even going to ask the

doctor if we could start tapering off or stopping completely the

naprosyn at his next visit in December.

I realise that has a mild case of JRA and he was responding

well to the Naprosyn. Although he has complained of pain in his

hips, knees and one finger ive never seen any swelling and he has

full range of motion in the hurting joints. had not

complained about any pain since early August, hence my desire to try

and stop the drugs.

Yesterday morning Nick woke up in a whiney and crying mood, just

like he use to before he was dx. He was back to scooting down the

stairs on his butt and laid on the floor facing away from the TV. He

said his hand hurt and his legs hurt, it hurt to walk. He didnt have

a fever (yeah) and i continued to get him ready for school, hoping

that he would start to feel better. I told him to go to the nurse if

it got too much at school. I carried him out for the bus but as soon

as he saw it he started to cry, so no school. My neighbor said his

hand looked swollen around his knuckles and so did my husband when i

brought Nick back home. He could still bend them, but didnt like me

touching them.

I gave him tylenol as well as his naprosyn and by the pm he seemed

much happier ( whined and complained about anything and everything

all morning laying on the sofa).

I didnt call his rheummy as I want to see if it clears up on its

own. I couldnt see the swelling that my neighbor and hubby could and

I dont want to over-react.

Will this go away on its own??? get worse???? can joints swell a

little and then clear up or is it a start of things getting worse???

Any ideas????

Hugs Helen and (6 systemic)

To leave this mailing list, send request to:

-unsubscribe

[Guest guest]

Hi ,

thanks for the feedback.. I say Nick has a mild case because hes not

having 1/2 the problems etc that a lot of the systemic kids on the

list have. I thought that Systemic JRA was the rarest of the 3, but

i think a lot of list memebers have systemic kids. I feel very

fortunate to have such a resource.

Nick is very fortunate to have such a mild case, alhtough i know

that this might not aways be the case and at anytime things can

change at the drop of a hat. Through all the support on this list i

know though, that if that were to happen I would be more prepared.

No matter how " mild " Nicks JRA is, you are right that its a serious

thing and never to be taken lightly.

I keep a log and write down any changes that Nick tells me about or

I see. I take it each time we visit the rheummy and she actually

photocopies it and puts it in his file. Nick is one of these kids

though that doesnt always tell you when something is wrong. So its

hard to gauge just how bad he hurts sometimes. He also will say its

better ( even if its not) if he thinks he will miss out going/doing

something fun.

Anyways im rambling. Thanks again for taking the time to give me

some feedback.

HUgs Helen and (6, systemic)

not -- In , " Tepper, Michele " <MTepper@f...>

wrote:

> Hi, Helen. I would keep track of the episode and any

reoccurrences. The

> dr does need to know about it - if it happens again soon, you

might want

> to put in a call and the dr can determine if he needs to be seen

sooner.

> Is Naprosyn all he is on right now? If so, and if he has more

episodes,

> he may need a DMARD which could help, then you could taper the

NSAID.

> I know you said that has a " mild " case, but really this

is a

> chronic illness. Some kids have more joints affected at any given

time,

> or more incidence of fever, but it is still something that is

serious.

> You are not over - reacting if you call out of concern and

hopefully

> your dr will not treat you like you are. Your child has an illness

that

> can affect may aspects of his life. And yes, it very definitely can

> clear up or get worse - there really is no telling. Unfortunately.

If,

> for example, he catches a cold, it could cause him to have pain,

even

> though he has been pain free for awhile. This happened recently

with my

> son. He was off his Celebrex, down to 7.5mgs of MTX, and then his

> allergies flared up badly, and he got an ear infection. That has

caused

> his back pain to come back and his morning stiffness, so he is

back up

> on his MTX and now taking some Celebrex again. It is quite a roller

> coaster. Sometimes we all worry about looking like an

overprotective

> parent that we don't call when we should. I know I have done that

quite

> a few times. Just recently, I wasn't going to call on Chris'

allergies

> and not feeling well, then decided I might as well. We get in to

the

> peds office and they're like, His ear drum is ready to burst, the

> infection is so bad! Of course, I felt like the Mother of the

Year -

> not! Anyway, trust your instincts and do what you think is best

for your

> son. That is all any of us can do! Hope this helps, Michele

> (16,pauci & spondy)

>

>

> From: hburger64 [mailto:hburger64@h...]

> Sent: Saturday, October 11, 2003 7:25 AM

>

> Subject: Update.

>

>

> Hi all,

>

> Well, i was getting ready to send a good news report myself the

> other day. was doing wonderfully. Hes such a different

> child from the one back in the spring. I was even going to ask the

> doctor if we could start tapering off or stopping completely the

> naprosyn at his next visit in December.

>

> I realise that has a mild case of JRA and he was

responding

> well to the Naprosyn. Although he has complained of pain in his

> hips, knees and one finger ive never seen any swelling and he has

> full range of motion in the hurting joints. had not

> complained about any pain since early August, hence my desire to

try

> and stop the drugs.

>

> Yesterday morning Nick woke up in a whiney and crying mood, just

> like he use to before he was dx. He was back to scooting down the

> stairs on his butt and laid on the floor facing away from the TV.

He

> said his hand hurt and his legs hurt, it hurt to walk. He didnt

have

> a fever (yeah) and i continued to get him ready for school, hoping

> that he would start to feel better. I told him to go to the nurse

if

> it got too much at school. I carried him out for the bus but as

soon

> as he saw it he started to cry, so no school. My neighbor said his

> hand looked swollen around his knuckles and so did my husband when

i

> brought Nick back home. He could still bend them, but didnt like

me

> touching them.

>

> I gave him tylenol as well as his naprosyn and by the pm he seemed

> much happier ( whined and complained about anything and everything

> all morning laying on the sofa).

>

> I didnt call his rheummy as I want to see if it clears up on its

> own. I couldnt see the swelling that my neighbor and hubby could

and

> I dont want to over-react.

>

> Will this go away on its own??? get worse???? can joints swell a

> little and then clear up or is it a start of things getting

worse???

>

> Any ideas????

>

> Hugs Helen and (6 systemic)

>

>

>

> To leave this mailing list, send request to:

> -unsubscribe

>

>

[Guest guest]

In a message dated 4/13/04 6:43:52 PM Central Daylight Time, hburger64@... writes:

To those who have upped the SQ MTX, how soon do you notice it helping.. I know it take 6-8 weeks initally, but does it also take another 6-8 weeks for any increases to show???

Hi Helen,

I don't know if this was just a fluke or what.When got maxed out on 25mg MTX things stayed the same,then 6 weeks later the swelling in his very resistant ankle went away. had never been on a stable dose until then.

Hugs

Becki and 5 systemic

[Guest guest]

In a message dated 4/13/04 7:46:42 PM Eastern Daylight Time,

hburger64@... writes:

<<

She pretty much told me what I thought she would... We have to slow

down with the prednisone taper. It looks like we wont have him off it

until the end of the year (. She only wants to taper 1/2mg a month.

So we have 8 months to go (.

She has also upped the MTX from 10mg to 15mg. Pretty big jump. Thats

a 50% raise (. >>

Hi Helen:

1/2 mg a month, sorry it's going to go so slow, but, hoping and praying that

will do the trick for Nick and not send him into any flares.

I hope the MTX will make a difference for him. When is he next injection?

Friday?

Take care.

Patty

[Guest guest]

Hey Helen... I am glad you finally got ahold of your rheumy.. Bummer

though! Poor Nick. I hope the slow taper and the upped MTX helps him

feel better though!

I'm sending many happy thoughts your way!

Alia

> HI all,

>

> Im wayyyy behind, but i thought I would let you all know how Nick

is

> doing. I finally got ahold of the rheumy today, we were playing

phone

> tag ))

>

> She pretty much told me what I thought she would... We have to

slow

> down with the prednisone taper. It looks like we wont have him off

it

> until the end of the year (. She only wants to taper 1/2mg a

month.

> So we have 8 months to go (.

>

> She has also upped the MTX from 10mg to 15mg. Pretty big jump.

Thats

> a 50% raise (.

>

> So we will see how he does in the next month. She wants Nicks labs

+

> a 24 hr MTX level done the week before we see her next time.

>

> To those who have upped the SQ MTX, how soon do you notice it

> helping.. I know it take 6-8 weeks initally, but does it also take

> another 6-8 weeks for any increases to show???

>

> Hoping to get caught up with my replies tonight.. if everyone here

> gives me 3 mins peace )))

>

> Hugs Helen and (6,systemic)

[Guest guest]

Helen - it was good to hear that is enjoying the snow and feeling

better. We will be thinking of you on Feb 2. That little guy needs a break.

Take care of yourself. Sandi Ken and Hunter (7 Systemic)

[Guest guest]

Helen,

I am happy that Nick is enjoying long periods in the snow. Lucky guy! My

poor kids have only seen snow maybe once or twice in their lives! I was sad to

read about his heart. You and Nick will definitly be in our prayers.

Summer-Gabi 8 poly, Colten 11, 7

hburger64 <hburger64@...> wrote:

Sorry i have been so quiet lately, just a ton of stuff going on.

Little time for mommy and her computer.

Nichoals is doing very well on his remicade. Enjoying LONG periods

of play outside in the snow with his brothers. This is a 1st since

dx 3 long years ago that hes had the engery to play after school.

usually hes dragging by the end of the school day and just lays

around watching TV, or playing computer games etc.

Nick saw a new rheumy yesterday, his is still out on medical leave.

he was a very nice guy and we enjoyed meeting him. He knew his stuff

thats for sure. is loking very good exceot in his hands, he

has swelling in a few of his fingers and has very weak grip

strength. he made some comment about Nicks hands just dont match the

rest of his build. I didnt get to ask more questions as the nurse

came in and the the topic went another direction and I forgot. But

all in all in was a good appt. We then right striaght accross the

hall and had his remicade infusion.

On a side note, echocardigram he had shows thats theres

something wrong with his heart. His aortic root is enlarged. We meet

with a pedicatric cardioloigst on feb 2nd to get some answers and

find out exactly what this means. Please keep nick in your thoughts

that day. We realy dont need something else to deal with.

hugs Helen and (8,systemic)

[Guest guest]

Hi Helen,

We too will keep in our prayers.

Brad and

Delaney (2 1/2 - pauci)

--- summer garcia <remmussing@...> wrote:

> Helen,

> I am happy that Nick is enjoying long periods in

> the snow. Lucky guy! My poor kids have only seen

> snow maybe once or twice in their lives! I was sad

> to read about his heart. You and Nick will

> definitly be in our prayers.

> Summer-Gabi 8 poly, Colten 11, 7

>

> hburger64 <hburger64@...> wrote:

> Sorry i have been so quiet lately, just a ton of

> stuff going on.

> Little time for mommy and her computer.

>

> Nichoals is doing very well on his remicade.

> Enjoying LONG periods

> of play outside in the snow with his brothers. This

> is a 1st since

> dx 3 long years ago that hes had the engery to play

> after school.

> usually hes dragging by the end of the school day

> and just lays

> around watching TV, or playing computer games etc.

>

> Nick saw a new rheumy yesterday, his is still out on

> medical leave.

> he was a very nice guy and we enjoyed meeting him.

> He knew his stuff

> thats for sure. is loking very good exceot

> in his hands, he

> has swelling in a few of his fingers and has very

> weak grip

> strength. he made some comment about Nicks hands

> just dont match the

> rest of his build. I didnt get to ask more questions

> as the nurse

> came in and the the topic went another direction and

> I forgot. But

> all in all in was a good appt. We then right

> striaght accross the

> hall and had his remicade infusion.

>

> On a side note, echocardigram he had shows

> thats theres

> something wrong with his heart. His aortic root is

> enlarged. We meet

> with a pedicatric cardioloigst on feb 2nd to get

> some answers and

> find out exactly what this means. Please keep nick

> in your thoughts

> that day. We realy dont need something else to deal

> with.

>

> hugs Helen and (8,systemic)

>

>

>

>

>

>

>

>

[Guest guest]

Glad to hear Nick's playing in the snow. What fun! I will keep you all

in my prayers - I hope nothing new comes up, Michele ( 18, spondy)

update.

Sorry i have been so quiet lately, just a ton of stuff going on.

Little time for mommy and her computer.

Nichoals is doing very well on his remicade. Enjoying LONG periods

of play outside in the snow with his brothers. This is a 1st since

dx 3 long years ago that hes had the engery to play after school.

usually hes dragging by the end of the school day and just lays

around watching TV, or playing computer games etc.

Nick saw a new rheumy yesterday, his is still out on medical leave.

he was a very nice guy and we enjoyed meeting him. He knew his stuff

thats for sure. is loking very good exceot in his hands, he

has swelling in a few of his fingers and has very weak grip

strength. he made some comment about Nicks hands just dont match the

rest of his build. I didnt get to ask more questions as the nurse

came in and the the topic went another direction and I forgot. But

all in all in was a good appt. We then right striaght accross the

hall and had his remicade infusion.

On a side note, echocardigram he had shows thats theres

something wrong with his heart. His aortic root is enlarged. We meet

with a pedicatric cardioloigst on feb 2nd to get some answers and

find out exactly what this means. Please keep nick in your thoughts

that day. We realy dont need something else to deal with.

hugs Helen and (8,systemic)

[Guest guest]

Hi Helen!

I am so glad to hear that is doing so much better & has more energy

with the Remicade! You and Nick will be in my thoughts and prayers on the 2nd -

I hope that the trip to the cardiologist will result in more peace of mind than

new worries! Hugs!

Val

Rob's Mom (8,systemic)

update.

Sorry i have been so quiet lately, just a ton of stuff going on.

Little time for mommy and her computer.

Nichoals is doing very well on his remicade. Enjoying LONG periods

of play outside in the snow with his brothers. This is a 1st since

dx 3 long years ago that hes had the engery to play after school.

usually hes dragging by the end of the school day and just lays

around watching TV, or playing computer games etc.

Nick saw a new rheumy yesterday, his is still out on medical leave.

he was a very nice guy and we enjoyed meeting him. He knew his stuff

thats for sure. is loking very good exceot in his hands, he

has swelling in a few of his fingers and has very weak grip

strength. he made some comment about Nicks hands just dont match the

rest of his build. I didnt get to ask more questions as the nurse

came in and the the topic went another direction and I forgot. But

all in all in was a good appt. We then right striaght accross the

hall and had his remicade infusion.

On a side note, echocardigram he had shows thats theres

something wrong with his heart. His aortic root is enlarged. We meet

with a pedicatric cardioloigst on feb 2nd to get some answers and

find out exactly what this means. Please keep nick in your thoughts

that day. We realy dont need something else to deal with.

hugs Helen and (8,systemic)

[Guest guest]

Helen,

I am glad that Nick is doing better on the remicade and now has the

engergy to play outside - that's great. Keeping you guys in my

thoughts - let us know what you find out.

Blessings,

& (11-poly)

(7), Caity (4)

's JRA Page: http://www.caringbridge.org/mn/palexander/

JRA Webring: http://d.webring.com/hub?ring=kidslivingwithar

>

> Sorry i have been so quiet lately, just a ton of stuff going on.

> Little time for mommy and her computer.

>

> Nichoals is doing very well on his remicade. Enjoying LONG periods

> of play outside in the snow with his brothers. This is a 1st since

> dx 3 long years ago that hes had the engery to play after school.

> usually hes dragging by the end of the school day and just lays

> around watching TV, or playing computer games etc.

>

> Nick saw a new rheumy yesterday, his is still out on medical

leave.

> he was a very nice guy and we enjoyed meeting him. He knew his

stuff

> thats for sure. is loking very good exceot in his hands,

he

> has swelling in a few of his fingers and has very weak grip

> strength. he made some comment about Nicks hands just dont match

the

> rest of his build. I didnt get to ask more questions as the nurse

> came in and the the topic went another direction and I forgot. But

> all in all in was a good appt. We then right striaght accross the

> hall and had his remicade infusion.

>

> On a side note, echocardigram he had shows thats theres

> something wrong with his heart. His aortic root is enlarged. We

meet

> with a pedicatric cardioloigst on feb 2nd to get some answers and

> find out exactly what this means. Please keep nick in your

thoughts

> that day. We realy dont need something else to deal with.

>

> hugs Helen and (8,systemic)

>

[Guest guest]

Helen,

Sorry to hear the doctors have found something else possibly wrong. I

really hope someone read something wrong. It is unreal what they find by

probing around for something else. I will be thinking of you guys.

(poly 35)

update.

Sorry i have been so quiet lately, just a ton of stuff going on.

Little time for mommy and her computer.

Nichoals is doing very well on his remicade. Enjoying LONG periods

of play outside in the snow with his brothers. This is a 1st since

dx 3 long years ago that hes had the engery to play after school.

usually hes dragging by the end of the school day and just lays

around watching TV, or playing computer games etc.

Nick saw a new rheumy yesterday, his is still out on medical leave.

he was a very nice guy and we enjoyed meeting him. He knew his stuff

thats for sure. is loking very good exceot in his hands, he

has swelling in a few of his fingers and has very weak grip

strength. he made some comment about Nicks hands just dont match the

rest of his build. I didnt get to ask more questions as the nurse

came in and the the topic went another direction and I forgot. But

all in all in was a good appt. We then right striaght accross the

hall and had his remicade infusion.

On a side note, echocardigram he had shows thats theres

something wrong with his heart. His aortic root is enlarged. We meet

with a pedicatric cardioloigst on feb 2nd to get some answers and

find out exactly what this means. Please keep nick in your thoughts

that day. We realy dont need something else to deal with.

hugs Helen and (8,systemic)

[Guest guest]

Helen,

Here is to an uneventful week for Mr.Nick.

I hope things go well and the shorter time between infusions is the answer.

Everything crossed!!!

Love ya

Becki and 7 systemic

[Guest guest]

Becki,

Isn't it so amazing and wonderful when the doctors talk TO the child and not

over them. I am 36 and had JRA since 3 - I have seen MANY doctors in my life.

As a child I went to clinic mostly and it was a teaching hospital (I do

understand that now but NOT then) the doctors and their " enterage " of 12

students

come in and use kids like a " lab rat " I HATED it. They talked about me and

over me, but rarely TO me. They did the walk across the room, turn your neck,

bend your elbows etc - but NEVER explained any of the WHY's to me!

I am so glad you have found a DR who is soooo good to . Doctors who

take the time with patients are rare - but do exist.

Good luck and best wishes!

love, prayers and blessings,

(poly)

[Guest guest]

,

You are so right. just adores and respects Dr.Lovell,even at 7 yrs old.

doesn't wear undies because his daddy doesn't.Dr.Lovell and his sister

left the room so he could put on the paper shorts.He was so embarassed that he

held his hand over his privates duiring the exam,even though all was covered.

Dr.Lovell was so patiant when he wanted to grab his shins and pull his

legs toward his chest 1 at a time,even though didn't want to uncover his

paper shorts.(all was covered,no pee hole,lol)

By the time it was over and time to get dressed again Dr.Lovell told him he

could put his pants over the paper shorts but daddy convinced him they all had

the same thing.Sure enough without hesitation hid himself with his pants

but took the paper shorts off and put his pants back on.PURE TRUST!

Dr.Lovell is so great and so careing.He has No problem with letting

Vanderbilt see 2x yearly just incase there is an emergancy.I am truley

half way

tempted to just go to Cinci and if there is an emergancy we have friends in the

area.

Hugs

Becki and 7 systemic

[Guest guest]

I know the feeling on that thought. I can't seem to get off his higher

dose.

--

Lorilee

~~~~~~~~~~~~~~~~

Ken 47 {PolyRA}

6 {Systemic JRA, Eczema},

Kayla 15 {Healthy Thank God}

18 {Asthma}

~~~~~~~~~~~~~~~~

-------------- Original message --------------

From: " hburger64 " <hburger64@...>

We just finished Nick's 5 day prednisone burst and its amazing what a

difference 5 days can do. Hes back to his happy little self and the

swelling in his knuckles has gone way down. I can still feel quite a

bit, but its much much better. He was actually able to open our front

door this morning!!! Now we go down to 2mg and see if we can make it

to fridays appt. We have such a full day on friday, his rheumy appt,

followed by a remciade infusion follwed by a OT consult...

Its such a pity prednisone is such an awful drug. It sure is a wonder.

hugs Helen and (8,systemic)

[Guest guest]

Helen

I am glad the pulse is working. It's such a love/hate relationship with

Prednisone isn't it?

They gave Caroline a huge steroid boost right before her infusion. Probably why

she feel

so good!

I hope that Nick can hold on until Friday... He sure deserves a break!

Alia and Caroline, age 4, poly and iritis

>

> We just finished Nick's 5 day prednisone burst and its amazing what a

> difference 5 days can do. Hes back to his happy little self and the

> swelling in his knuckles has gone way down. I can still feel quite a

> bit, but its much much better. He was actually able to open our front

> door this morning!!! Now we go down to 2mg and see if we can make it

> to fridays appt. We have such a full day on friday, his rheumy appt,

> followed by a remciade infusion follwed by a OT consult...

>

> Its such a pity prednisone is such an awful drug. It sure is a wonder.

>

> hugs Helen and (8,systemic)

>

[Guest guest]

Helen,

glad to hear that the pred did the trick and hopefully it will last

for awhile. Friday will be a busy day! Has the rest of the family

had any of the heart tests done?

-Its funny that you mentioned about Nick opening the front door. Its

those little things that you really pick up on sometimes that let you

know how their doing.

I believe that sweet boy of yours deserves an ice-cream cone or

something delicious on his round of appointments Friday! :-)

(Aundrea 10 systemic jra)--

In , " hburger64 " <hburger64@...> wrote:

>

> We just finished Nick's 5 day prednisone burst and its amazing what

a

> difference 5 days can do. Hes back to his happy little self and the

> swelling in his knuckles has gone way down. I can still feel quite a

> bit, but its much much better. He was actually able to open our

front

> door this morning!!! Now we go down to 2mg and see if we can make it

> to fridays appt. We have such a full day on friday, his rheumy appt,

> followed by a remciade infusion follwed by a OT consult...

>

> Its such a pity prednisone is such an awful drug. It sure is a

wonder.

>

> hugs Helen and (8,systemic)

>

[Guest guest]

Helen - these days the toothfairy can get expensive - Nick is truly a

trooper and so are you.

Sandi Ken Hunter (7 Systemic)

[Guest guest]

Poor Nick. Sending hugs his way,

Liz

By the way, the tooth fairy should be extra generous if she's able!!!!

_____

From: [mailto: ] On Behalf

Of hburger64

Sent: Wednesday, June 21, 2006 6:14 PM

Subject: Update.

Nick has had a rough week, bless him.

last week it was the infected mosquito bites, and strep. Today he had

6 baby teeth pulled ( not falling out on their own) His face is all

swollen and sore, but hes being a real trooper. He wont even take

tylenol, he says its ok, i dont need it. He did manage a little mac

and cheese and is hungry now but i cant find anything that he wants.

Hes expecting a windfall from the toothfairy tonight ))))

hugs Helen and the chipmonk, (8,systemic)

[Guest guest]

Helen,

Bless Nick's heart.

I somewhat understand the thinking of pulling all six at once.When I had my

wisdom teeth cut out of my head the oral surgeon said get them all done now or

you will never come back.On the other hand 6 teeth is a WHOLE lot.

Be careful on the food and make him rinse real good.If Nick gets dry sockets

he will be sneaking his pain meds and begging you for some.

I hope he recovers quickly.

Love and hugs

Becki and 7systemic

[Guest guest]

Give Nickynoodle (i love that name) a hug from us.............poor little

tough guy!!!!

Luv and hugs,

Aj and Holly (12 yrs old, systemic jra since 9/94)

_www.caringbridge.org/visit/holly_ (http://www.caringbridge.org/visit/holly)