New to Group

March 4, 2005

,

Welcome to the group and I hope you soon feel like we are all part of your

family.

My son is systemic and was diagnosed at 33 months old.

We had an awful time with the Prelone syrup for several weeks.It is very

bitter and nasty tasting.I have no quick solutions other then hold your ground

and

just keep trying.Joe will eventualy come around and at some point he probably

will not mind the taste at all.

Something you can try is haveing it flavored at the pharmacy.

Methotrexate is absolutely the next step in the right direction.It does

however take several weeks to start working.

The best thing you can do is learn as much as you can about the disease and

the drugs used to treat it.This can be very overwhelming and scarey,sometimes

you can just read to much medical jumbo.Thats where we all come in.There isn't

a drug out there or a drug combo that one of our kids has not tried.Parent

input is the best and it helps balance things.

Hugs

Becki and 6 systemic

March 4, 2005

Hi, and welcome. Although my son does not have systemic and I

am sure one of those moms will chime in soon, I do have some experience

with the oral pred with a little one, as my son has asthma also and had

to take that when he small. It is rather hard as it tastes awful as I

recall. For my son, we would try stirring it into a small amount of

pudding or applesauce or even ice cream. Not the best, but it did help.

Would putting a flavor in it at the pharmacy be possible? They did not

have that when my kids were little, but I see the signs for it now.

About the MTX pills, you can hide them in the same things if he has a

tough time swallowing them. It seems to me, though, that most of the

younger kids here are on the MTX injections. They seem to work better

and cause less stomach upset for the little ones. The folic acid may be

available in a chewable vitamin with a high enough dose - I am not sure.

The folic acid is important though, as it helps to keep the side effects

of the MTX at a minimum. Again welcome to our little group. You have

found a great place to learn and to know there are others out there who

know exactly what you are going through. Michele ( 17, pauci &

spondy)

New to group

Hi my name is and I have been observing for the last week.

Sorry for the long messate

On march 1st, my son Joe age 3 (3-20-2001) was diagnosis by ped

rheum at University of Iowa with systemic after 4 weeks of fevers

(CRP finally down to 3 after 3 weeks of NSAIDS)and ruling out

infection and cancer ect. (had bone scan, bone marrow and CTs

negative)

The kiddo is mean and tired (I would be too). Poor appetite, anemic,

won't eat anything. ( the milkshakes idea is great!)

Any suggestions for getting oral prednisone liquid down? My husband

and I hold him down and he spits it out? We blow in his face and

maybe gets a tenth of the med. He sees medicine and he runs away.

Encouraged ice before or a chaser after. He won't listen to it.

2nd question:

We are going to start methotrexate tablets with folic acid also in

the next week?

Is this considered " standard " ? Or what is standard? I know it is

important to try to taper off the predinsone in a timely manner?

Also any other advice or suggestions are appreciated. Or any insight

into kids with systemic JRA concerns.

Thanks for your time and listening

, (Joe 3 systemic dx 3-1 -05)

March 4, 2005

Our daughter was on Pred and the doctor told us that it was ok to mix it

with her ibuprofen (I'm not sure if your son is on that or not). We

just measured them both out and then took the syringe and mixed it up

and then she took it great.

I understand though because my daughter had taken pred by itself for

pneumonia several times before and we did the same thing...hold her

down, blow in her face...you name it we tried it and nothing worked. We

tried mixing it will food and she refused to eat...I defiantly would NOT

recommend mixing it with food. She refused to eat anything for a LONG

time.

The doc also told us to mix it with chocolate syrup but my daughter

didn't like chocolate.

Best of luck!!!!

New to group

Hi my name is and I have been observing for the last week.

Sorry for the long messate

On march 1st, my son Joe age 3 (3-20-2001) was diagnosis by ped

rheum at University of Iowa with systemic after 4 weeks of fevers

(CRP finally down to 3 after 3 weeks of NSAIDS)and ruling out

infection and cancer ect. (had bone scan, bone marrow and CTs

negative)

The kiddo is mean and tired (I would be too). Poor appetite, anemic,

won't eat anything. ( the milkshakes idea is great!)

Any suggestions for getting oral prednisone liquid down? My husband

and I hold him down and he spits it out? We blow in his face and

maybe gets a tenth of the med. He sees medicine and he runs away.

Encouraged ice before or a chaser after. He won't listen to it.

2nd question:

We are going to start methotrexate tablets with folic acid also in

the next week?

Is this considered " standard " ? Or what is standard? I know it is

important to try to taper off the predinsone in a timely manner?

Also any other advice or suggestions are appreciated. Or any insight

into kids with systemic JRA concerns.

Thanks for your time and listening

, (Joe 3 systemic dx 3-1 -05)

March 4, 2005

Hi Michele,

Welcome to the group. This is a great place to get info from parents of

systemic kids. I agree with Becky to read as much as you can about systemic

jra. And yes, prednisone tastes awful. We used to use a whiskey shot glass,

and we filled it with chocolate milk. We added the prednisone to the

chocolate milk. Our son, who was four, thought it was cool to drink out of

the little glass, and the flavor was a little disguised. Sometimes I would

take a syringe (with no needle) and squirt the chocolate milk and prednisone

mixture into his mouth. It's not an easy process. Best wishes. , and

Ezra, eight year old systemic

3/3/05 1:41 PM, " micmert1 " <micmert@...> wrote:

>

> Hi my name is and I have been observing for the last week.

> Sorry for the long messate

>

> On march 1st, my son Joe age 3 (3-20-2001) was diagnosis by ped

> rheum at University of Iowa with systemic after 4 weeks of fevers

> (CRP finally down to 3 after 3 weeks of NSAIDS)and ruling out

> infection and cancer ect. (had bone scan, bone marrow and CTs

> negative)

>

> The kiddo is mean and tired (I would be too). Poor appetite, anemic,

> won't eat anything. ( the milkshakes idea is great!)

>

> Any suggestions for getting oral prednisone liquid down? My husband

> and I hold him down and he spits it out? We blow in his face and

> maybe gets a tenth of the med. He sees medicine and he runs away.

> Encouraged ice before or a chaser after. He won't listen to it.

>

> 2nd question:

>

> We are going to start methotrexate tablets with folic acid also in

> the next week?

>

> Is this considered " standard " ? Or what is standard? I know it is

> important to try to taper off the predinsone in a timely manner?

>

> Also any other advice or suggestions are appreciated. Or any insight

> into kids with systemic JRA concerns.

>

> Thanks for your time and listening

>

> , (Joe 3 systemic dx 3-1 -05)

>

March 4, 2005

Hi ,

Welcome to the group. My name is and my daughter, Aundrea age

9 has arthritis with systemic symptoms. We also go to the

University of Iowa and we see Dr. Polly Ferguson. We have been

going there for over a year now.

Aundrea had two major flares with high fevers and rashes and then

the joint pain in wrist, knees and ankles.

She started off with Plaquenil. After about six months the flares

kept returning. She started prednison and we did two tapers this

winter. She started methotrexate (mtx) about 2 months ago in

addition to the plq and folic acid.

After week three of the mtx, Aundrea has not had any joint pain.

Some occasional stiffness and still gets a frequent, fleeting rash

on face and chest. But, overall she is so much happier. Her grades

have once again returned to A's and B's and her playful personality

has returned.

When she was feeling miserable and dealing with the mood swings from

the steroids she was extremely challenging to deal with. She could

go from giggles to tears in minutes.

Hopefully the mtx will start to get things under control and then

you will be able to start tapering the pred.

I wonder if there is any possibility of getting the pred in pill

form and then crushing it and putting it in icecream, applesauce, or

pudding?

I am glad you joined the group and just fire away any questions that

you have. There are some very experienced people on this list and I

have found it to be an invaluable resource.

God Bless,

(Aundrea 9 systemic)

P.S. where do you live? I live in on Illinois which is about

an hour north of the quad cities.--

In , " micmert1 " <micmert@m...> wrote:

>

> Hi my name is and I have been observing for the last

week.

> Sorry for the long messate

>

> On march 1st, my son Joe age 3 (3-20-2001) was diagnosis by ped

> rheum at University of Iowa with systemic after 4 weeks of fevers

> (CRP finally down to 3 after 3 weeks of NSAIDS)and ruling out

> infection and cancer ect. (had bone scan, bone marrow and CTs

> negative)

>

> The kiddo is mean and tired (I would be too). Poor appetite,

anemic,

> won't eat anything. ( the milkshakes idea is great!)

>

> Any suggestions for getting oral prednisone liquid down? My

husband

> and I hold him down and he spits it out? We blow in his face and

> maybe gets a tenth of the med. He sees medicine and he runs away.

> Encouraged ice before or a chaser after. He won't listen to it.

>

> 2nd question:

>

> We are going to start methotrexate tablets with folic acid also in

> the next week?

>

> Is this considered " standard " ? Or what is standard? I know it is

> important to try to taper off the predinsone in a timely manner?

>

> Also any other advice or suggestions are appreciated. Or any

insight

> into kids with systemic JRA concerns.

>

> Thanks for your time and listening

>

> , (Joe 3 systemic dx 3-1 -05)

March 4, 2005

Hi, Michele. My daughter was diagnosed with poly last October and started

out with Pred, Naprosyn, and Zantac. She did best with the pred/bubble gum

mix done by the pharmacist. It was still aweful, but I got some of the

gummy vitamins, they are sugar coated as well and she always got one after

the pred (you take two of those kind of vitamins a day), and she did great.

She was only just turned 2, so she didn't know to fight it really. She has

since tapered off the pred. and we are starting MTX this week. The MD said

to keep taking the same vitamins she has been taking (the spiderman gummies

twice a day) and that was sufficient for the folic acid. These gummies are

GOOD and might be just the incentive he needs, along with a strond flavorx

from the pharmacy!!!! It is certainly worth a try. My daughter did fight

taking her meds in the beginning, but eventually she just got used to it and

stopped fighting. Hope this helps. You have to do whatever it takes,

because they HAVE to take the meds. If he wont swallow the MTX pills, ask

about the shot, or taking the shot orally(that is what we will be doing).

It is such a small amount of liquid, they don't get a chance to really spit

it out.

and Hailey-2-poly

>From: " micmert1 " <micmert@...>

>Reply-

>

>Subject: New to group

>Date: Thu, 03 Mar 2005 18:41:36 -0000

>

>Hi my name is and I have been observing for the last week.

>Sorry for the long messate

>

>On march 1st, my son Joe age 3 (3-20-2001) was diagnosis by ped

>rheum at University of Iowa with systemic after 4 weeks of fevers

>(CRP finally down to 3 after 3 weeks of NSAIDS)and ruling out

>infection and cancer ect. (had bone scan, bone marrow and CTs

>negative)

>

>The kiddo is mean and tired (I would be too). Poor appetite, anemic,

>won't eat anything. ( the milkshakes idea is great!)

>

>Any suggestions for getting oral prednisone liquid down? My husband

>and I hold him down and he spits it out? We blow in his face and

>maybe gets a tenth of the med. He sees medicine and he runs away.

>Encouraged ice before or a chaser after. He won't listen to it.

>

>2nd question:

>

>We are going to start methotrexate tablets with folic acid also in

>the next week?

>

>Is this considered " standard " ? Or what is standard? I know it is

>important to try to taper off the predinsone in a timely manner?

>

>Also any other advice or suggestions are appreciated. Or any insight

>into kids with systemic JRA concerns.

>

>Thanks for your time and listening

>

> , (Joe 3 systemic dx 3-1 -05)

>

Gray, Independent Educational Consultant

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March 4, 2005

Hi ,

I, too, have a systemic son who's problems started when he was 3.

He had all the systemic symptoms, but no lingering joint pain, so we

didn't get a diagnosis til he was 7. Once diagnosed, he was started

immediately on mtx. and pred. and he had already been taking

naprosyn for 4 years. Once the mtx. seems to take effect (could be

4 - 12 weeks), then if your son's doing well, the pred will mostly

likely get tapered. If the mtx. isn't working, they may try giving

it in liquid form and you squirt it into juice. If that doesn't

work, it can be injected. This is what really worked for us. Once

we started doing the injections, that got my son to about 99%. If

even the injections fail, than there are a number of other DMARDs to

try, or combinations of DMARDs. If all those fail, then he can

start with the BRMs (biologis response modifiers) such as Enbrel,

Humira, Remicade or Kineret.

The latest thinking is that if you can achieve medicated control

quickly, that the prognosis may be better for the child. I am a fan

of that approach. Not everyone is, but do your research and keep

asking questions.

I hope the mtx kicks in quickly and your son gets relief quickly.

Stacia and Hunter 8 systemic, iritis (PS - you should get his eyes

examined by a pediatric ophthalmologist periodically to screen for

iritis)

March 4, 2005

, I forgot to welcome you. WELCOME.

Stacia and Hunter 8 systemic, iritis

March 4, 2005

I don't have any answers for the systemic JRA, however as far as the

methotrexate I can offer a little advice. My son first started out on the pills

and we used a pill crusher then mixed it with chocolate ice cream, or whatever

kind your son prefers, and he took it really well. We could only be on the pills

for a short time because it wasn't strong enough to help and also it caused

problems with my sons stomach. We then switched to the injection until he

developed a psychosis towards the needles.

Deadra and Chase 7 pauci and uveitis

micmert1 <micmert@...> wrote:

Hi my name is and I have been observing for the last week.

Sorry for the long messate

On march 1st, my son Joe age 3 (3-20-2001) was diagnosis by ped

rheum at University of Iowa with systemic after 4 weeks of fevers

(CRP finally down to 3 after 3 weeks of NSAIDS)and ruling out

infection and cancer ect. (had bone scan, bone marrow and CTs

negative)

The kiddo is mean and tired (I would be too). Poor appetite, anemic,

won't eat anything. ( the milkshakes idea is great!)

Any suggestions for getting oral prednisone liquid down? My husband

and I hold him down and he spits it out? We blow in his face and

maybe gets a tenth of the med. He sees medicine and he runs away.

Encouraged ice before or a chaser after. He won't listen to it.

2nd question:

We are going to start methotrexate tablets with folic acid also in

the next week?

Is this considered " standard " ? Or what is standard? I know it is

important to try to taper off the predinsone in a timely manner?

Also any other advice or suggestions are appreciated. Or any insight

into kids with systemic JRA concerns.

Thanks for your time and listening

, (Joe 3 systemic dx 3-1 -05)

March 5, 2005

This is so interesting to listen to this thread! Lexi actually DOESN'T MIND

the taste of prednisone and hasn't ever complained! I guess I'm lucky!

March 5, 2005

Dear ,

My son was also three when he was diagnosed with systemic JRA. He was diagnosed

on 8/30/04. He turned 4 in Oct. He also started with the steriod and two weeks

later we started mtx. I got great feedback from this group that it was good to

be aggressive. From what I have read the more aggressive in the beginning

perhaps the better the outcome.

Our Dr. prescribed Orapred. I belive someone else mentioned this. My son did

not have any problems taking it. I looked it up online when he was first given

it. If I am remembering right it was only on the " market " a few years ago. I

also belive that it is the only flavored steroid and was made for children.

Also, (I think this was also mentioned by others) you can have medincine

flavored. We use the Target pharmcacy and they showed me this big long list of

all the flavors. Also they have recommendations for which flavoring works best

for the type of medicine. It cost $3.00 to flavor. I am sure most pharmacys

can do this. I know that he is small but we really tried to explain to my son

when he did not want to take a medicine that this was what the docotor was doing

to try to make him better. (He would ask us when was he going to get better.)

At first I am not sure that it helped but as he began to feel better he really

began to stop fusing about the medicine even the

yucky medicine. He also began to handle the blood draws better. He does not

want to go back to being sick and so we do not have any trouble with him taking

medicine.

My son also takes the Oral MTX. At first we crushed it up in applesauce. Now

we put a whole pill in a spoonful of pudding and he swallows it just fine. I

have just learned that you should take this on an empty stomach but a little

food to help it go down is O.K. I am constantly learning and the people in this

group are a great source of information.

My son takes a multi-vitamin with 400mg of foic-acid. He takes the sugar-free

super hero ones. Our Dr. said that this was fine unless he started having

problems which so far he has not had any sores. Some children in this group

take a prescription folic-acid. Also, I do not think that you mentioned that

you were taking calcium with the steroid. Again, our Dr. told us that he should

take the calcium. I believe that he actually said that if he ended up only

being on it a short while 4 - 6 weeks then he would not need the additional

calcium but that after a couple of months on the steriod the calcium was very

important. So we went ahead and started giving him what the Dr. recommended.

He took two calcium chews each day.

My son was also very anemic and would not eat. Our Dr. explained that the

inflamation is what casued the anemia and that until the inflamation went down

the anemia would not improve. We also gave him pedisure and Ensure. Once that

steriod kicked in though I could not keep him from eating. His weight before he

gor sick ws 40 pounds then he lost 4 pounds. Once the steriod kicked in he went

up to 46 pounds. I tried very hard to over only health foods. He was

constantly hungery and and often very difficult. However, once he was off the

steriod, even when he got down to a low dose, he was much easier to deal with.

For some reason the steriod really bothered his nose and we had a hard time with

that. He complained about his nose bothering him constantly.

Keep visiting this group and you will learn alot.

Christi (Logan, systemic, 4)

micmert1 <micmert@...> wrote:

Hi my name is and I have been observing for the last week.

Sorry for the long messate

On march 1st, my son Joe age 3 (3-20-2001) was diagnosis by ped

rheum at University of Iowa with systemic after 4 weeks of fevers

(CRP finally down to 3 after 3 weeks of NSAIDS)and ruling out

infection and cancer ect. (had bone scan, bone marrow and CTs

negative)

The kiddo is mean and tired (I would be too). Poor appetite, anemic,

won't eat anything. ( the milkshakes idea is great!)

Any suggestions for getting oral prednisone liquid down? My husband

and I hold him down and he spits it out? We blow in his face and

maybe gets a tenth of the med. He sees medicine and he runs away.

Encouraged ice before or a chaser after. He won't listen to it.

2nd question:

We are going to start methotrexate tablets with folic acid also in

the next week?

Is this considered " standard " ? Or what is standard? I know it is

important to try to taper off the predinsone in a timely manner?

Also any other advice or suggestions are appreciated. Or any insight

into kids with systemic JRA concerns.

Thanks for your time and listening

, (Joe 3 systemic dx 3-1 -05)

March 7, 2005

Stacia,

Thank you for the insight. It is scary make choices with these medical options.

But I too think that " aggressive " treatment " is needed early to at least attempt

to prevent joint damage and taper down the steriod. It is just probable Systemic

JRA and Joe has trouble describing if things hurt. One day his " knees are

wobbly " the next his elbow hurts. I do know my child likes to be carried around

a lot and doesn't' want to take stairs in the morning.

This past summer he won't pedal a bike or trike because it was " too Hard " . But

he could run with the best of three year olds.

I just don't want to take a chance that this is all a concidential and a

behavior issue with being an only child.

Thanks for the eye exam reminder. Joe has one in about a month with a peds eye

doctor.

Take care and I wish Hunter the best

(JOE 3, systemic)

Re: New to group