Re: Hemoglobin/Caitlin's Bone Marrow Test

[Guest guest]

In a message dated 12/28/03 8:22:27 PM Eastern Standard Time, gmckin@...

writes:

<<

Sorry for not being clear enough in that last post. The misoprostol was

prescribed because it's commonly used to help prevent ulcers in people

who take arthritis and pain medications that may produce ulcers, such as

the NSAIDs (non-steroidal anti-inflammatory drugs). It works by

protecting the stomach lining and decreasing stomach acid secretion. My

son was very anemic and a stool sample came back positive for blood so

he had an upper GI series done, which showed some stomache irritation

and inflammation. His hemoglobin levels were very low, but I'm not sure

of the exact numbers off-hand, so it was an added bit of protection. He

was taking the cytotec just once a day until recently, when we added a

pm dose too ... as we recently increased his daily Indomethacin from

50mg a day to 75mgs.

>>

Hi Georgina:

You were probably clear in your post, I am just not clear these days:) I may

read something and then ask about it again. Things are settling into my

brain, but there's so much to take in.

Sounds like the mistoprostal did the trick with 's stomach. I am a bit

concerned that they never did a stool sample on Caitlin to determine if she

wasn't bleeding from the Naproxen.

Take care.

Patty

[Guest guest]

In a message dated 12/28/03 9:26:48 PM Eastern Standard Time,

Arthurnator@... writes:

<<

worse.His temp only hit 100.5 but he was lethargic and screaming.I freaked

out

of cource,called the ped rheumy,who said take him to ER.While he was being

weighed he hurled everywhere and that is when his nose was full of thick

green

stuff.Nothing before then.Diagnoses sinus infection. >>

Wow, he was really ill with a low temperature. Good thing you were on top of

it.

<<econd infection was the week before Christmas.Him and his sister had

chronic

barky coughs.Sister had fevers was just approaching the 100 mark.Again

freaked,kind of due to this flu season.Sister viral, viral with a

secondary ear infection,and of cource no pain.

I wish I knew how>>

Why no pain?

<>

We all learn something new every day. It's simple. Simply hightlight the

text on the email you are responding to, right click on the mouse to copy, then

go to your email you are writing and right click paste where you want the text

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<>

Hhhmmmm wonder which mom. Have a lot of you gone to another rheumy for a

second opinion? I was thinking of going to Hopkins or Children's for a

second opinion just in case or confirmation of a dx when we get one. I will

share

that ray of hope for Caitlin with you:)

<<Patty,I have no idea how

you can tell if she has strep if she shows no symptoms.Both of mine got

Scarlet

Fever in preschool/daycare.No fever,mild sore throat and just as wild as

ever.My tip off is 1 complaint of a sore throat and 1 >>

I think I will have to instruct Caitlin that if she feels the slightest off,

sore throat, stomach ache, etc. I need to know and take her in just to be on

the safe side. When she did complain of the sore throat it had already gone

to her blood. I know sometimes kids will complain of the tummy ache so I will

have to explain that to her too.

<<strep in 3 yrs.Knock on wood.The best advice I can give is when in

doubt,draw

the blood.No fun for anyone but special kids need special care and better

safe

then sorry.>>

KNOCK KNOCK KNOCK. That's great:) I agree, when in doubt I will have to

have them draw blood. I just hope they do it and don't argue with me about it.

<<Sounds like you know your way around an IEP,so you know at any time you can

have an addendum>>

These I do know. Both Caitlin and receive resources and Jen has

received them since she was 15 months old. I am fortunate that I now know who

to

go to in the county, etc. too:) Sounds like it could come in handy with

Caitlin and this 'illness'.

<<Try and think about what kind of problems Caitlen is

having.Can she carry her lunch tray,use the restroom by herself.Does she need

more time to get where she needs to go,modified PE,BACKPACKS wheigh a ton

these days,mayby an exta set at home.Fatigue and exhaustion,can she walk

everywhere she needs to go,more absenteism then normal.Last thing you need is to

be

draged into court on truency charges.>>

Very good suggestions:) I was thinking of the extra time already and I like

the extra books at home idea. Those backpacks are so so heavy these days. I

just need to figure out when to send her back. She misses her friends and

wants to go back. I want her to have a good week under her belt before she goes

back. After all this, when she starts to feel better I don't want to rush it

and have her have a relapse.

That would be the last thing I would need, that's for sure, a truancy charge.

<<ism then normal.Last thing you need is to be draged into

court on truency charges.I don't know if she is under 504 or IDEA but with

the

new troubles might qualify for IDEA,You have the special ed due to learning

disability so just one more>>

She is under the IDEA. So far we have gotten everything we have asked for,

amazingly. I hear a lot of horror stories with children not getting what they

need and deserve. We love our county.

<<doctors taper steroids differantly.Vanderbilt was very aggressive

with ,down right kick him over the edge of the cliff,as I would say.It's

such a learning experiance because each child is differant.Some go very slow

giving the other drugs time to work.Unfortunately steroid tapers are not a

science but an art.It takes a mother a while to know when they think it's

safe to

taper.Sometimes having to go against doctors orders and go slower or faster.>>

Getting them off the steroids sounds sort of like a nightmare and a guessing

game:( Something I am not looking forward to.

<<Patty,oh how I wish all us systemic moms could just close our eyes and beam

you all our knowledge.You are on the right track though.The more you ask the

more you will learn and there is nothing like real life experiances from

other

moms.You can only read the definition of JRA so many times.>>

That would be wonderful if you could:) I am learning a lot from all of you

on this list though:) Knowing others have gone through this and that they

symptoms Caitlin has had/is having there is always someone on the list with that

area of expertise helps tremendously (Did that make sense LOL?). I have always

been an information guru. I want to know the good and the bad so I can be

prepared and an advocate. While I was in the hospital with Caitlin and had no

computer access I called a friend, like me with the information thing, and she

looked up everything I asked and reported back to me:) I feel better (though

sometimes more scared) knowing what I am looking at and how I can help my

child. Just hope you don't get sick of my asking. I seem to be asking the

most

here lately.

<<moms.You can only read the definition of JRA so many times.

Have you contacted your local Arthritis Foundation?Ask your rheumy if he has

any patiants close to you and if so will they ask the other mom/moms to get

in

touch with you.>>

Haven't contacted them yet, but I am planning on it. When we meet with the

rheumy, possibly when he gets back into town, I will ask him if her has any JRA

patients I can get in touch with.

<<Alot of AF have meetings once a month for Juvenile Arthritis

and I met a mom whos daughter is just 9 months younger and systemic that only

lives 1.5 miles away through our rheumy.The kids even go to the same school.>>

That would be great if they have meetings. 1.5 miles away and at the same

school, small world isn't it. It must be especially nice for the kids too,

knowing there is someone in their own school that understands.

<<but I didn't really know what it was like to

have a little boy until the Enbrel.He makes his ped nervous and even the ped

rheumies.They envision broken bones and stitches.When first seen the

ped

rheumy he was burning up and his joints were contracted so bad he was stuck

in the fetal position.His last visit he jumped off the table yelling " cannon

ball " >>

Why do they envision broken bones and stitches? I bet you loved the 'cannon

ball' jump:) Our day is so much easier and happier when our kids are healthy

and happy:)

Thanks again Becki.

Patty

[Guest guest]

In a message dated 12/28/03 9:49:26 PM Eastern Standard Time,

Arthurnator@... writes:

<<

You are right about RF not always causing serious heart damage.s Aunt

had it as a child and is fine but several years ago when those diet pills

became

available again in the US she had an EKG or something that showed a heart

defect and couldn't take them.She is now in her early to mid 40's and still

fine.

I know Kim,Logan's mom responded to one of your first posts,Her son had a

test done that showed very high amounts of exposure to strep so thats how

they

diagnosed.I want to say C reactive protein but don't hold me to it.

Hugs

Becki and 5systemic >>

Thank God she went in for an EKG beforehand. Does she take antibiotics

before dental work/surgery? I have to take antibiotics before them. I will

have

to check if they did a C reactive protein, it does sound familiar.

Thanks again.

Patty

[Guest guest]

In a message dated 12/29/03 7:03:58 PM Central Standard Time, Emeraldsx3@... writes:

Why do they envision broken bones and stitches? I bet you loved the 'cannon ball' jump:) Our day is so much easier and happier when our kids are healthy and happy:)

Patty,WOW it worked,thank you so much!!!

When you take not quite a 4 foot child jumping off a 3.6foot table jumping as high in the air as he can and landing barefooted on a hard floor something could snap.The stitches part came in at his last visit to the ped.He has learnt that if he runs he can jump on the table which is up against the wall.We had to take him 6 hours away to Cincinnati Childrens to get him on Enbrel and the doctor wouldn't let us pick him up and put him on the table.He wanted to see if he could climb up there on his own.Even with the stool we had to give him a little booty push.

Hugs

Becki and 5 systemic

[Guest guest]

In a message dated 12/29/03 7:16:59 PM Central Standard Time, Emeraldsx3@... writes:

Does she take antibiotics before dental work/surgery?

Hi Patty,

Not that I know of and as far as becoming neurotic about germs,she is a Kindergarten teacher and has been for 20 years.

Hugs

Becki

[Guest guest]

In a message dated 12/30/03 10:10:25 AM Eastern Standard Time,

Arthurnator@... writes:

<< Not that I know of and as far as becoming neurotic about germs,she is a

Kindergarten teacher and has been for 20 years.

H >>

Wow, talk about not becoming neurotic! Working with kindergarteners - we all

know how many germs you pick up at school. Glad to hear she has done so

well.

Take care.

Patty

[Guest guest]

In a message dated 12/31/03 4:33:32 PM Central Standard Time, Emeraldsx3@... writes:

They couldn't put him on Enbrel closer to home? Is his rheumy in Cincinnati?

Hi Patty,

When Enbrel was first approved in 98 it took off like a wild fire.It was the first drug of it's kind and was called a miricle drug.So many people needed it that there just wasn't enough to go around.The drug company started a waiting list and you had to submit an aplication. was on the list for 9 months when I found a 3 yr safety study for Enbrel at Cincinnati childrens. was able to start immediately and 9 days after the first shot all symptoms went away and we started weaning him off his other drugs.If it hadn't been for Georgina and this list I never would have learened about it.We go to Vanderbilt for our regular appointments but go to Cincy every 6 months for the next 2 years,the first year was every 3 months.Glad that part is over. was going to be put on Enbrel anyway so it's nice to have an extra set of eyes and ears monitoring him for any side effects and if you read any studies done on JRA and Enbrel you will find his doctors name.

Hugs

Becki and 5 systemic

[Guest guest]

In a message dated 1/2/04 12:09:48 PM Eastern Standard Time,

Arthurnator@... writes:

<< e a wild fire.It was the

first drug of it's kind and was called a miricle drug.So many people needed

it

that there just wasn't enough to go around.The drug company started a

waiting

list and you had to submit an aplication. was on the list for 9 months

when I found a 3 yr safety study for Enbrel at Cincinnati childrens >>

Wow, sounds like you were fortunate to have found Cincinnati Childrens.

<< was

able to start immediately and 9 days after the first shot all symptoms went

away and we started weaning him off his other drugs.If it hadn't been for

Georgina and this list I never would have learened about it>>

Nine days later, that's great:) How often does he take it? Is it an

injectable med or by mouth? How long had been on the other meds before

going

to Cincinnati?

<<We go to Vanderbilt for

our regular appointments but go to Cincy every 6 months for the next 2

years,the first year was every 3 months.Glad that part is over. was

going to be

put on Enbrel anyway so it's nice to have an extra set of eyes and ears

monitoring him for any side effects and if you read any studies done on JRA

and

Enbrel you will find his doctors name.>>

What made them decide to put him on Enbrel? Was it a matter of trying other

meds and seeing that they weren't doing the best for him?

Thanks Becki.

Patty

[Guest guest]

In a message dated 1/2/04 3:15:17 PM Central Standard Time, Emeraldsx3@... writes:

Nine days later, that's great:) How often does he take it? Is it an injectable med or by mouth? How long had been on the other meds before going to Cincinnati?

Hi Patty,

Enbrel is an injection taken 2x a week and we went to Cincy 15 months after diagnoses.

was diagnosed right before his 3rd b-day and between diagnoses and Enbrel he was on 800mg Ibuprofin a day,25mg Methotrexate sub-q 1x week,200mg Plaquenil a day,continuous steroids to no avail,folic acid,calcium,vitamin D, and twice to the ortho to have a joint drained and injected with steroids.The Ibuprofin,MTX and Plaquenil were all maxed out,there was nothing else they could do.He was resistant to combonation DMARD therapy so we added Enbrel and started whats called triple combination DMARD therapy.So basicaly my resistant child went into an almost instant medicated remission.

Hugs

Becki and 5 systemic