aundrea

[Guest guest]

Hi :

Welcome back. Sounds like a fantastic vacation. I am thrilled Aundrea and

everyone enjoyed their vacation.

That just stinks that she is feeling yucko now:( I hope this is just a

'little bug' and doesn't cause her any further problems.

How is she today?

Take care.

Patty

[Guest guest]

Hi Everyone,

We had a great trip to Myrtle Beach, South Carolina. Aundrea did wonderful.

She was able to keep up with her

cousins and was the healthiest I have seen her since her first flare just over a

year ago.

Yesterday, was her first day back to school and she woke up achey all over and

said it felt like her body was

broken. I took her to school and she went directly to her special room with a

bed that they have for her and an

hour later the nurse was calling for me to come pick her up. She ended up

sleeping all day and had a sorethroat

and swollen lymph nodes at night. She woke up today in pain but so far has

manage to stay at school all day.

Hopefully this will be a very short-lived flare. We have done some reading on

diet and are trying to make some

changes to Aundrea's. Apparently omega 3's are very beneficial in reducing

joint pain. We started giving her

fish oil and foods such as salmon, tuna, etc... Omega 6's are espcially bad for

arthritis. For example peanut butter.

Too bad because thats one of Aundrea's favorites.

Other foods that are beneficial included pineapple, leafy green veggies,

strawberries, etc...

I guess it doesn't hurt to try to make some diet changes and hopefully she will

have some improvement.

I haven't had a chance to catch up on all of your posts. I hope everyone is

doing well.

Take Care,

(Aundrea age 8 jra)

[Guest guest]

. I am glad that you had a wonderful trip. Too bad Aundrea is feeling bad again. At least it didn't happen on your vacation.

As far as diet - I also hear that Blueberries and Kiwi are very good...

Alia and Caroline, age 2, poly/uveitis

-----Original Message-----From: sonia1md [mailto:sonia1md@...]Sent: Wednesday, April 14, 2004 2:55 PM Subject: aundreaHi Everyone,We had a great trip to Myrtle Beach, South Carolina. Aundrea did wonderful. She was able to keep up with her cousins and was the healthiest I have seen her since her first flare just over a year ago.Yesterday, was her first day back to school and she woke up achey all over and said it felt like her body was broken. I took her to school and she went directly to her special room with a bed that they have for her and an hour later the nurse was calling for me to come pick her up. She ended up sleeping all day and had a sorethroatand swollen lymph nodes at night. She woke up today in pain but so far has manage to stay at school all day.Hopefully this will be a very short-lived flare. We have done some reading on diet and are trying to make somechanges to Aundrea's. Apparently omega 3's are very beneficial in reducing joint pain. We started giving her fish oil and foods such as salmon, tuna, etc... Omega 6's are espcially bad for arthritis. For example peanut butter.Too bad because thats one of Aundrea's favorites.Other foods that are beneficial included pineapple, leafy green veggies, strawberries, etc...I guess it doesn't hurt to try to make some diet changes and hopefully she will have some improvement.I haven't had a chance to catch up on all of your posts. I hope everyone is doing well.Take Care, (Aundrea age 8 jra)

[Guest guest]

Hi Alia,

Aundrea loves kiwis and blueberries so I will make sure to incorporate those in

her diet as well.

Are you doing anything special with Caroline's diet. How has she been doing

lately?

(Aundrea age 8 jra)--

- In , " Pranke, Alia " <Alia.Pranke@t...> wrote:

> . I am glad that you had a wonderful trip. Too bad Aundrea is feeling

> bad again. At least it didn't happen on your vacation.

>

> As far as diet - I also hear that Blueberries and Kiwi are very good...

>

> Alia and Caroline, age 2, poly/uveitis

>

> aundrea

>

>

> Hi Everyone,

>

> We had a great trip to Myrtle Beach, South Carolina. Aundrea did wonderful.

> She was able to keep up with her

> cousins and was the healthiest I have seen her since her first flare just

> over a year ago.

>

> Yesterday, was her first day back to school and she woke up achey all over

> and said it felt like her body was

> broken. I took her to school and she went directly to her special room with

> a bed that they have for her and an

> hour later the nurse was calling for me to come pick her up. She ended up

> sleeping all day and had a sorethroat

> and swollen lymph nodes at night. She woke up today in pain but so far has

> manage to stay at school all day.

>

> Hopefully this will be a very short-lived flare. We have done some reading

> on diet and are trying to make some

> changes to Aundrea's. Apparently omega 3's are very beneficial in reducing

> joint pain. We started giving her

> fish oil and foods such as salmon, tuna, etc... Omega 6's are espcially bad

> for arthritis. For example peanut butter.

> Too bad because thats one of Aundrea's favorites.

>

> Other foods that are beneficial included pineapple, leafy green veggies,

> strawberries, etc...

>

> I guess it doesn't hurt to try to make some diet changes and hopefully she

> will have some improvement.

>

> I haven't had a chance to catch up on all of your posts. I hope everyone is

> doing well.

>

> Take Care,

> (Aundrea age 8 jra)

>

>

>

> _____

>

>

[Guest guest]

.

Supposedly those friuts are high in anti-oxidents or something. That's what my mom told me. She's a nurse so I trust her opinion. We haven't really done too much to change her diet. Mostly, we try to just give her a well balanced meal. We've cut out red meat (not that she ate it all that much anyways). We try to give her fish at least once a week and lots of fruits and vegtables. She loves soup so we make her chicken noodle with egg noodles and veggies. She eats that about 3 times a week. She asks for it everyday - but I don't think that's the best route! Haha!

Caroline is hanging in there. She's been having some back and wrist pain lately. We go back to the rheumy on the 26th so we hope to up the MTX and taper her pred...

I am glad to hear Aundrea made it though school today. It must be such a relief each day she is able to!

aundrea> > > Hi Everyone,> > We had a great trip to Myrtle Beach, South Carolina. Aundrea did wonderful.> She was able to keep up with her > cousins and was the healthiest I have seen her since her first flare just> over a year ago.> > Yesterday, was her first day back to school and she woke up achey all over> and said it felt like her body was > broken. I took her to school and she went directly to her special room with> a bed that they have for her and an > hour later the nurse was calling for me to come pick her up. She ended up> sleeping all day and had a sorethroat> and swollen lymph nodes at night. She woke up today in pain but so far has> manage to stay at school all day.> > Hopefully this will be a very short-lived flare. We have done some reading> on diet and are trying to make some> changes to Aundrea's. Apparently omega 3's are very beneficial in reducing> joint pain. We started giving her > fish oil and foods such as salmon, tuna, etc... Omega 6's are espcially bad> for arthritis. For example peanut butter.> Too bad because thats one of Aundrea's favorites.> > Other foods that are beneficial included pineapple, leafy green veggies,> strawberries, etc...> > I guess it doesn't hurt to try to make some diet changes and hopefully she> will have some improvement.> > I haven't had a chance to catch up on all of your posts. I hope everyone is> doing well.> > Take Care,> (Aundrea age 8 jra)> > > > _____ > >

[Guest guest]

In a message dated 4/15/04 3:58:57 PM Eastern Daylight Time,

sonia1md@... writes:

<<

Hi Patty,

She is doing better today and was able to go back to school yesterday. How

is everyone in your family doing/

(Aundre >>

Hi :

Glad to hear she is doing better today:)

Everyone here is doing well. We have 'officially' passed the April 15

" should see a flare by then, if any were to happen once off meds " time frame:)

Caitlin continues to do well, thank God. Her next blood draw is in May. It

will

be interesting to see what the numbers are at. Getting ready to open our pool

and she is so anxious about it LOL. Keeps talking about it and now is

sending me emails about it:)

Take care.

Patty

[Guest guest]

Patty,

I'm sooo glad Caitlin is doing so well. Does she have any

complaints at all lately??? I'm sure you'll let us know all about

the next rheumy appt and I can't wait for the hopefully good news.

Stacia and Hunter (Big 8th Birthday today), systemic,iritis

[Guest guest]

Thanks Helen for the dose information, etc... Aundrea's doctor did

mention that we could go to the injection if she has difficulty

with the oral meds. She is also letting me take charge of the pred

taper. Basically just to slow down on the taper if she begins to

flare. Believe me, I will be glad to get her off the pred, however

the mood swings seem to be lessening a little.

You made me laugh thinking of Nicks dad's shaky hands. I think I

would opt to wait for moms night off too!

Doesn't the world just seem so much brighter when your child is

feeling better. Aundrea ran off to join her friends this morning and

was looking forward to a class party this afternoon. I was reminded

of the poem that Aundrea wrote during her last flare when she

mentioned her favorite part of feeling better was getting out of bed

and going to school!:-)

Hope you guys have a great weekend!

God Bless,

(drea 9 systemic)-

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

>

> -...

> What a relief that Aundrea is doing better...im very happy to see

> this news...

>

> Shes starting at 10mg, each pills is 2.5mg and then going up to

> 15mg. I hope she tolerates it well... Nick only did 2 or 3 doses of

> the pills before we switched to shots. He did soo much better on the

> shots ( his were tummy issues) I beleive that the shots cause less

> of the liver toxicity that you hear of, so that might be something

> to talk to the rhuemy about if Aundrea liver numbers are high after

> taking it.

>

> We started Nick on a sunday night, but that made him too tired for

> school on monday so we switched to Friday nights. The tiredness

> seems to be getting better with Nick and is not such an issue as it

> was int he beginning. He now gets his shot on a saturday as he

> doesnt want my husband to do it and Im at work friday nights (

> daddys hands shake too much and Nick is convinced the needle is

> going to break off in his belly!!!! LOL) We have moved this shot day

> a few times depending on whats going on in the family.. but its

> always fri/sat or sunday...we dont do think on a regualr basis, but

> sometimes its nessassary.

>

> I would think that if you did it on friday night and Aundrea can

> sleep in on saturday she should do ok....it was the having to wake

> up early for school that became an issue for us. If Aundrea is able

> to sleep and rest as much as possible then she should be ok for the

> xmas events she has coming up. Of course nothings definate as we

> dont know how she will react though. Just what I think i would tend

> to do in your situation.

>

> As to the blood work... Nick gets his every 6 weeks, it is moving

> out to every 2 months. In the begining it was every 4 as we were

> seeing thr rheumy every 4, but we are stretching out the appts and

> Nick has a good history of no problems with his liver numbers. I

> beleive its pretty typical to stetch out the labs once they have

> been done a few times...

>

> Good luck.. and once again im smiling thinking of Aundrea enjoying

> school!!!

>

> Hugs Helen and (7,systemic)

> -- In , " sonia1md " <sonia1md@y...> wrote:

> >

> > Hello everyone,

> >

> > My computer was acting up all day and I couldn't get online until

> > evening. Then I wrote a long post updating what was happening and

> for

> > some reason the post didn't go thru! :-(

> >

> > Things are going so much better. The steroids kicked in yesterday

> and

> > Aundrea was feeling back to her old self. She was really pale and

> had

> > episodes of fleeting rash but the joint pain had subsided. She

> was

> > very happy to return to school.

> >

> > I spoke with the rheumatologist yesterday and she has agreed that

> the

> > plaquenil is not enough for Aundrea at this time. She is adding

> > Methotrexate in addition to the prednisone and plaquenil. I also

> > asked about the folic acid and she is starting her on that to.

> (thanks

> > for reminding me about the need for the folic acid)

> >

> > I am not sure what her dose is yet. I guess she will start with 4

> > pills the first week and if she doesn't have complications she

> will go

> > up to 6 pills. We got all of her lab draws done yesterday and she

> > will continue to get lab draws every two weeks for the first month

> and

> > then monthly thereafter. She ordered all the lab tests that you

> guys

> > had indicated that she would. (Do your kids get monthly labs or

> does

> > that spread out over time?)

> >

> > The other question I have is regarding when to start the

> methotrexate.

> > I have read that many of you give the medicine on Friday nights

> so

> > that if need be your child can have the weekend to recouperate.

> That

> > would be my plan but Aundrea has the Christmas program this Sunday

> and

> > then next Saturday is Christmas. If I were to start the

> methotrexate

> > on Sunday night for 2 weeks could I then move to Friday nights? I

> > wasn't sure if you can change the day once you get started?

> >

> > I sure hope that Aundrea does well with this med. She seems to be

> > very sensitive to medications. I guess she inherited that from me

> > along with her Aunt that has Chrones disease. We all seem to get

> > every side effect that comes with a med. In fact my sister

> developed

> > terribly high liver enzymes, mouth sores and anemia from the

> > methotrexate. I am hoping and praying that this med will work for

> > Aundrea with very little side effects.

> >

> > Thanks to all of you for helping me thru this flare. You guys are

> my

> > rock and the support, advice, encouragement and prayer has all

> been so

> > greatly appreciated.

> >

> > (Drea 9 systemic)

[Guest guest]

HI Stacia,

You were very helpful. I finally heard back from the rheumy Friday

night regarding Aundrea's labs. She said not to worry about her

having low leukocytes and that it was normal for people with

autoimmune disorders.

I am planning to start the methotrexated Sunday night. I almost was

going to give it to her tonight, but so far Aundrea has always

struggled with some side effects from every med she takes. The

plaquenil has caused sun sensitivity and bruising, the prednisone

has caused terrible mood swings, the nsaids were the worst with

dizziness and nausea ....so after refecting on that I just don't

want to ruin things for her for the Christmas play. I think I will

just allow her to sleep in on Monday and hopefully she can then go

to school without any complications.

Then the following week I will get her moved to Saturdays as her

regular day.

It seems like many on the list are doing the injectable

methotrexate. Was that due to nausea problems??? How long did you

wait with hunter before you had to switch to injections?

The other thing that seems a little off to me was the dosage. Is

15mg a rather high dose to start off with or is that fairly typical?

(drea 9 systemic)---

In , " staciar101 " <staciar@c...> wrote:

>

> Hi ,

>

> We give mtx injections on Sat. evenings so he can sleep through

any

> possible side effects and have Sunday to recouperate, if need be.

> That being said, we have frequently, of late, given him the

> injections at all different times on Sunday, instead, and once it

> even wound up being Monday around lunch time (that was just an

ooops

> we forgot). I must add that the slips in time have only been when

> he has not been flaring and we either got a tad-bit forgetful or

had

> other important family things going on that we didn't want him to

> miss (but like I said, it was when he's been doing well). If he

was

> in a flare, I don't think I would go beyond 12 - 24 hours either

> before the regular dose or after the regular dose. I thought I

read

> somewhere that is has pretty much a 7 day " half-life " of

> effectiveness, so when in a flare, just do what you have to do. I

> have brought his EMLA cream and whole " get up " of meds with us to

> many events and worked through it.

>

> To answer your question, you can change the regular day after you

> start, but don't go crazy... if you need to change from Sat to Sun

> for a few weeks, I think that's fine. Or from Sat to Friday for a

> few weeks, that's fine too.

>

> I hope I didn't confuse you. Ask anything you didn't understand.

>

> Stacia and Hunter 8 systemic, iritis

[Guest guest]

Hi ,

It seems like your dosing is just fine. Hunter started at 12.5mg

oral when he was 7 1/2, weighed about 60 lbs. He was then upped by

2.5 mg (one pill) pretty much each week until we maxed out at 25mg.

We did oral for a couple months, then got the injectible and squirt

it into juice for a couple months, then in month 5, we started the

actual injections. Our reason for doing injections is that the

other methods were'nt giving us great results. He had responded,

but was only at about 75% in my mind (still achy, needing heating

pads, limping). We were always shooting for 100%, and the

injections got us to that level. We never dealt with any major side

effects. I know the beginning of starting any new drug is scary.

Most on this list have been there with mtx, so you have good

company. I hope Aundrea has a blast at the Christmas play, feels

good for it, and that her mtx. goes well!!

Stacia and Hunter 8 systemic, iritis