Re: symtoms of systemic to Patty

[Guest guest]

Hi :

How did they help the enlarged liver and spleen? Steroids? Caitlin's lymph

nodes around her neck down towards her shoulders were quite large. They have

become much smaller hardly noticeable in that area. She has one that is still

enlarged at the back of her neck.

It sounds like quite a few people with JRA get sore throats with an active

flare. This will make it all that much harder to differentiate if Caitlin has

strep or a sore throat with a flare.

Did you put n on extra calcium as soon as she started the steroids? Are

steroids known to deplete calcium?

Caitlin didn't complain of her jaw hurting last night, thankfully. However,

she was very agitated and crying because her rectal area was itching like

crazy. It just seems like once something settles down something else starts

up:(

My husband, made dinner last night and for some reason lost his mind and

undercooked chicken (should have been an hour and a half and he cooked it for an

hour), so now I am worried about salmonella on top of everything else:( We

just came back from the pediatricians for a pin worm test. We never had any

experience with this so this too is new. So it could be pin worm (could be from

the hospital stay or so some say) or a hemorrhoid that the doctor didn't see

(she was constipated from the Naproxen) that is causing her itching. Tonight I

have to check her an hour after she goes to bed, apparently those little

boogers are active at night, yuck.

Caitlin first presented with a high fever (105, highest any of mine have

every had), sore throat (which is why I thought strep, but 2 throat cultures

came

back negative, little did we know it had already moved from her throat to her

blood), rash and within a week arthritis in her legs.

Thanks for answering yet more of my questions . This group is wonderful.

Take care.

Patty

[Guest guest]

Dear Patty, This is so weird. I have never read of anyone with the rectal itching, other than my daughter. n presented with this as well, and we had to test her for pin worms, urinary infection, and yeast infection. Nothing. We never found out what it was. About a year later n was diagnosed with exzema, and the doctor said you can get exzema in the vaginal area. We put her on protopic( a new drug from Japan at the time) and she still occasionally uses it at night for the vaginal or rectal itching. I must tell you that the itching went on for about a year. No one could tell us anything. We found the itching worse the more chocolate she ate.

Generally, the steroids will take care of the organ inflammation and lymph nodes, but some kids require pretty high doses. If your bottle says 15mg/5ml that means for every ml you give her there is 3 mg. So if she gets 3ml, then that is 9mg. If it is prednisone, that is not a very high dose at all. There are several types of steroids and the dosages are not all the same. Good luck.

Re: symtoms of systemic to Patty

Hi :How did they help the enlarged liver and spleen? Steroids? Caitlin's lymph nodes around her neck down towards her shoulders were quite large. They have become much smaller hardly noticeable in that area. She has one that is still enlarged at the back of her neck. It sounds like quite a few people with JRA get sore throats with an active flare. This will make it all that much harder to differentiate if Caitlin has strep or a sore throat with a flare. Did you put n on extra calcium as soon as she started the steroids? Are steroids known to deplete calcium? Caitlin didn't complain of her jaw hurting last night, thankfully. However, she was very agitated and crying because her rectal area was itching like crazy. It just seems like once something settles down something else starts up:( My husband, made dinner last night and for some reason lost his mind and undercooked chicken (should have been an hour and a half and he cooked it for an hour), so now I am worried about salmonella on top of everything else:( We just came back from the pediatricians for a pin worm test. We never had any experience with this so this too is new. So it could be pin worm (could be from the hospital stay or so some say) or a hemorrhoid that the doctor didn't see (she was constipated from the Naproxen) that is causing her itching. Tonight I have to check her an hour after she goes to bed, apparently those little boogers are active at night, yuck.Caitlin first presented with a high fever (105, highest any of mine have every had), sore throat (which is why I thought strep, but 2 throat cultures came back negative, little did we know it had already moved from her throat to her blood), rash and within a week arthritis in her legs.Thanks for answering yet more of my questions . This group is wonderful.Take care.Patty

[Guest guest]

Hi

I can't remember exactly but I know I read and heard about rectal itching and the reason for it when I saw a natural path last time. Let me ask next time I see him and I will get back about the reason. It makes sense that chocolate would make it itch more because of the sugar in it making the body more acid. If water with squeezedlime in helps the itching that would make sense too bacause that is alkaline and would neutrulize the Ph in the body.

I will let you know more after taking to my naturalpath next week. happy new year from

mom to Jackie 7 poly. sysytem jra

>From: "WILLIAM PRICE"

>Reply- >

>Subject: Re: symtoms of systemic to Patty >Date: Mon, 29 Dec 2003 13:13:57 -0800 > >Dear Patty, This is so weird. I have never read of anyone with the rectal itching, other than my daughter. n presented with this as well, and we had to test her for pin worms, urinary infection, and yeast infection. Nothing. We never found out what it was. About a year later n was diagnosed with exzema, and the doctor said you can get exzema in the vaginal area. We put her on protopic( a new drug from Japan at the time) and she still occasionally uses it at night for the vaginal or rectal itching. I must tell you that the itching went on for about a year. No one could tell us anything. We found the itching worse the more chocolate she ate. >Generally, the steroids will take care of the organ inflammation and lymph nodes, but some kids require pretty high doses. If your bottle says 15mg/5ml that means for every ml you give her there is 3 mg. So if she gets 3ml, then that is 9mg. If it is prednisone, that is not a very high dose at all. There are several types of steroids and the dosages are not all the same. Good luck. > Re: symtoms of systemic to Patty > > > Hi : > > How did they help the enlarged liver and spleen? Steroids? Caitlin's lymph > nodes around her neck down towards her shoulders were quite large. They have > become much smaller hardly noticeable in that area. She has one that is still > enlarged at the back of her neck. > > It sounds like quite a few people with JRA get sore throats with an active > flare. This will make it all that much harder to differentiate if Caitlin has > strep or a sore throat with a flare. > > Did you put n on extra calcium as soon as she started the steroids? Are > steroids known to deplete calcium? > > Caitlin didn't complain of her jaw hurting last night, thankfully. However, > she was very agitated and crying because her rectal area was itching like > crazy. It just seems like once something settles down something else starts up:( > My husband, made dinner last night and for some reason lost his mind and > undercooked chicken (should have been an hour and a half and he cooked it for an > hour), so now I am worried about salmonella on top of everything else:( We > just came back from the pediatricians for a pin worm test. We never had any > experience with this so this too is new. So it could be pin worm (could be from > the hospital stay or so some say) or a hemorrhoid that the doctor didn't see > (she was constipated from the Naproxen) that is causing her itching. Tonight I > have to check her an hour after she goes to bed, apparently those little > boogers are active at night, yuck. > > Caitlin first presented with a high fever (105, highest any of mine have > every had), sore throat (which is why I thought strep, but 2 throat cultures came > back negative, little did we know it had already moved from her throat to her > blood), rash and within a week arthritis in her legs. > > Thanks for answering yet more of my questions . This group is wonderful. > > Take care. > Patty > > >------------------------------------------------------------------------------ >

[Guest guest]

Hi Patty,

used to get the same thing for about the first month of diagnoses but his was more of a rash on his bottom.He was so young at the time that we treated him for diaper rash because he couldn't walk or stand alot of the times and holding him in a standing position or even putting him on the potty hurt so bad.He had to go back to diapers for a while.Anyways he had this awful rash on his bottom.I tried everything,even using his yeast infection cream.It wasn't until he got Elidel cream for exzema that it cleared up.It was just a couple weeks ago that he complained of his actual rectum itching.I tried the scotch tape test before bed.What a farce.No one in their right mind can tolerate tape up their crack,luckily his one and only complaint.

I had pin worms when I was Caitlins age and we found out because the thin,wiggly things were in my stools and of course the itchy rectum.Twenty some years later the memories are very vivid.It's not always detectable in the stool though.The little critters do like the night and darkness but I remember being naked,spread eagle,middle of the day in a brightly lit bathroom sreaming for my mommy to get them off of me.Sorry about the graphic details.It is a miserable experiance.

They are very thin,string like most often resembling lint.The thought of them is gross but if you have ever had to clean up throw up,pin worms are a piece of cake.

was right about the pred dose as far as 1ml =3mg. started at 30 and never could get below 9mg until Enbrel.He was on Prelone syrup or generic name Prednisilone.s bottle always said 15mg/5ml so it does sound like Caitlen is on 9mg.Anything of 7.5 or lower is considered low doses and similar to what the body makes naturaly.You shouldn't really see any side effects at that dose.

used to get arthur in his jaw too.Never lasted long but could be bad enough for him to scream and cry.I think you have been told it's the TMJ joint.

Still praying for uncomplicated RF or Strep induced Arthritis.

Hugs

Becki and 5 systemic

[Guest guest]

In a message dated 12/31/03 4:19:10 PM Central Standard Time, Emeraldsx3@... writes:

Is 30 considered a high dose? When you tried to get below 9 mg how did you know you couldn't go lower? Pain? Symptoms all return? Is Enbrel an NSAID?

Hi Patty,

I think anything over 20mg is considered high dose,20-7.5mg intermediate and below that low.

always had a hard time on just the 9mg but anytime we tried to go lower things just spiraled out of control.Fever,rash,joint swelling and contractures.severe fatigue and lots of screaming.

Enbrel is the newer Human biologic agent.Unlike DMARDS that supress the entire immun esystem it targets TNF which is a protein found in large amounts in people with RA and JRA.It causes mose of the pain and swelling in alot of people.On the down side TNF is a key component of the healthy immune system.This is the drug e mentioned came back over $1400 a month. takes half as much and his is $714.Luckily with insurance we pay $25.

I use the term Arthur because I wanted to disasosiate the disease from .At first he kind of freaked because he thought someone named Arthur was out to get him,lol.

Later on it worked out real well. wouldn't say"My arthritis is back"he would say"Arthurs back"and stuff like that.Right now Arthurs at the north pole and it's so far away it will take him a long time to come back.

Hugs

Becki and 5 systemic

[Guest guest]

In a message dated 1/1/04 1:00:29 PM Eastern Standard Time,

Arthurnator@... writes:

<< Unlike DMARDS that supress the

entire immun esystem it targets TNF which is a protein found in large

amounts in

people with RA and JRA.It causes mose of the pain and swelling in alot of

people.On the down side TNF is a key component of the healthy immune

system.This is >>

Not sure I want Caitlin to be on either of these if they suppress her immune

system. I worry about the steroids and her immune system. The last thing she

needs is another strep infection and I worry these might lower her immune to

much.

<<he drug e mentioned came back over $1400 a month. takes half as

much and his is $714.Luckily with insurance we pay $25.>>

Thankfully, it sounds like you have good insurance:) You have to wonder what

people do when their children are sick or chronically ill and have no

insurance.

<<the term Arthur because I wanted to disasosiate the disease from

.At first he kind of freaked because he thought someone named Arthur was

out to

get him,lol.>>

A great idea! Poor thing, glad he realized it was not someone out to get him.

<<Right now Arthurs at the north pole

and it's so far away it will take him a long time to come back.

>>

I hope Arthur freezes at the north pole and never comes back.

Take care.

Patty

[Guest guest]

In a message dated 1/2/04 2:49:59 PM Central Standard Time, Emeraldsx3@... writes:

Not sure I want Caitlin to be on either of these if they suppress her immune system. I worry about the steroids and her immune system. The last thing she needs is another strep infection and I worry these might lower her immune to much.

Hi Patty,

Something you have to understand about JRA and the drugs they use to treat it.If Caitlen does have systemic disease then it's an autoimmune disease.Her own immune system has gone into hyperdrive and can't tell health tissue from germs.The Steroids and the DMARD calm the overactive immune system with hopes of keeping it from attacking the body.

We aren't talking about cancer or AIDS but our kiddos immune systems aren't the same as a healthy persons either.When they do labs they always do the CBC and as long as the WBC isn't low you aren't considered immunosupressant.The rheumies keep close tabs on our kids.Even though we only go every 4 months has labs every 6 weeks.

Hugs

Becki and 5 systemic

[Guest guest]

In a message dated 1/5/04 12:51:20 PM Eastern Standard Time,

Arthurnator@... writes:

<< Something you have to understand about JRA and the drugs they use to treat

it.If Caitlen does have systemic disease then it's an autoimmune disease.Her

own

immune system has gone into hyperdrive and can't tell health tissue from

germs.The Steroids and the DMARD calm the overactive immune system with

hopes of

keeping it from attacking the body. >>

When Caitlin gets a dx, hopefully soon, we will have a clearer picture of

whether this is all due the strep in the blood or JRA. If it's not all strep

related, I will feel a bit better about the immune system, though, still worry,

like I am sure you all do. Of course, as you said, the steroid is, again

hopefully, calming down her immune system enough so the sed rate goes down,

hemoglobin goes up, etc. I am so thankful that there are steroids out there to

do

this.

<>

I learn something everyday. Thanks for the WBC info - I never knew there was

a definitive way to know if you are immunosuppressant.

Thanks for all your email responses Becki. I look forward to your words of

wisdom:)

Take care.

Patty