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--- RE: The JRA List

Date: Wed, 18 Feb 2004 12:34:19 -0700

From: " Jodi Dowell " <idmommy97@...>

gmckin@...

Hi Georgina,

My son is 8 years old, he will be 9 in March and he was diagnosed with

systemic JRA in July of this year, so we are fairly new to this disease.

It all started (we now believe) 3 years ago when he was 5, he had a

series of sinus infections, followed by severe leg pains, to where he

could not walk. Lots of friends of mine said that their boys had the

same problem around the same age, so it was probably growing pains, so I

gave it a few days, and the leg pains went away. Well, shortly after

that, my son woke up one morning with a rash on his stomach, soon it

spread all over his body, the doctor at the time ( we switched doctors

during this episode) said the rash was an allergic reaction to

something, I figured it was the new kid's soap I had just bought. Well,

about a month later, another sinus infection, and a new antibiotic,

amoxocillin, one that I had told the doctor that he had a slight

reaction to back when he was a baby, the doctor said that's common and

it should be fine...

well, 14 days into the antibiotic, and my son came down with huge red

welt looking hives, mostly around his stomach area, and soon he spiked a

fever and was back to having leg pains, as well as all over body pains.

Well, this was when we switched doctors (long story about why...) and

the new doctor saw him immediately, and really hesitated to diagnose it

as an allergic reaction to the amox., he felt that the symptoms were

that of syrum sickness, a type of allergic reaction, but he was

concerned about the leg pains and such that had occered before and he

told me he felt something arthritic could be going on...well, I would

not believe my baby had such a disease!!

All the blood work was done, he had high white cell counts, high sed

rate, negative ana and negative rh...all consistent with either

arthritis or syrum sickness. Well, the doctor ended up putting my son on

oral prednisone for 5 days, and within 2 days, my son felt perfect!

then, about 3 weeks later, my son woke up complaining about his ankle

hurting, and he was limping , I sent him to kindergarten and called the

doctor, he was seen that afternoon, and by then, my son's ankle felt

fine, but the doctor felt some slight swelling, and ordered a bone scan

for fear of a bone infection, bone scan done, everything was normal.

Fast forward 3 years....everything was fine, my son was

involved in every sport, football, baseball, basketball, very active,

and he felt fine...until the 4th of July this year. He came down with a

sudden fever, and he said his stomach hurt. 2 days later, he could

barely walk and his fever was spiking to 105...a month of tests later,

and he was diagnosed with systemic JRA and put on oral prednisone and

naproxen. After about a month, his rheumatologist put him on

methotrexate injections weekly. Well, currently, he is no longer taking

the pred., and recently we stopped the methotrexate because of severe

nausea problems that came on gradually, and ended up getting to the

point that my son was throwing up daily...the doctor said his body is

having a reaction to it since it has built up in his system. So, he is

not on any medication for 3 weeks, and then we see the rheumatologist

Feb 27 to talk about what we need to do...my fingers are crossed that he

does ok, so far so good. He has done so well, he has had slight

complaints of knee pain, but nothing major, and he has been able to

be active and go to school just fine, I feel we have been very lucky.

I am so sorry I rambled on so long, but that is our story. I

look forward to reading and sharing info about this disease, I don't

know anyone locally who has a child going through this, so it will be

nice to connect with others who know what this is like!

Jodi

[Guest guest]

Jodi, Welcome to the site. Our daughter has systemic, she was diagnosed nearly five years ago at age 10. She is currently on naprosyn, plaquenil, and tapering on prednisone. She has done relatively well these last five years, but she has flared badly about six weeks ago. She confuses the two local ped rheumys here, for she has such different symtoms. We just went and got a second opinion and that doctor said that her joints were in stellar condition. He is confused and ordered more blood tests to check for other diseases. She has a rough time most Januarys and then works out of it in a month or two and then is about normal. Right now her joints are fine, but she has severe headaches, chest pain and abdominal pain. She has always been ANA negative , but I think they are re-thinking lupus, and maybe Crohn's disease. In my heart I really think she has Still's, for we have seen way too much of the rash at times. (n, systemic, 15)

RE: The JRA ListDate: Wed, 18 Feb 2004 12:34:19 -0700From: "Jodi Dowell" <idmommy97@...>gmckin@...Hi Georgina,My son is 8 years old, he will be 9 in March and he was diagnosed withsystemic JRA in July of this year, so we are fairly new to this disease. It all started (we now believe) 3 years ago when he was 5, he had a series of sinus infections, followed by severe leg pains, to where he could not walk. Lots of friends of mine said that their boys had the same problem around the same age, so it was probably growing pains, so I gave it a few days, and the leg pains went away. Well, shortly after that, my son woke up one morning with a rash on his stomach, soon it spread all over his body, the doctor at the time ( we switched doctors during this episode) said the rash was an allergic reaction to something, I figured it was the new kid's soap I had just bought. Well, about a month later, another sinus infection, and a new antibiotic, amoxocillin, one that I had told the doctor that he had a slightreaction to back when he was a baby, the doctor said that's common and it should be fine...well, 14 days into the antibiotic, and my son came down with huge red welt looking hives, mostly around his stomach area, and soon he spiked a fever and was back to having leg pains, as well as all over body pains. Well, this was when we switched doctors (long story about why...) and the new doctor saw him immediately, and really hesitated to diagnose it as an allergic reaction to the amox., he felt that the symptoms were that of syrum sickness, a type of allergic reaction, but he was concerned about the leg pains and such that had occered before and he told me he felt something arthritic could be going on...well, I would not believe my baby had such a disease!!All the blood work was done, he had high white cell counts, high sed rate, negative ana and negative rh...all consistent with either arthritis or syrum sickness. Well, the doctor ended up putting my son on oral prednisone for 5 days, and within 2 days, my son felt perfect! then, about 3 weeks later, my son woke up complaining about his ankle hurting, and he was limping , I sent him to kindergarten and called the doctor, he was seen that afternoon, and by then, my son's ankle felt fine, but the doctor felt some slight swelling, and ordered a bone scan for fear of a bone infection, bone scan done, everything was normal.Fast forward 3 years....everything was fine, my son wasinvolved in every sport, football, baseball, basketball, very active, and he felt fine...until the 4th of July this year. He came down with a sudden fever, and he said his stomach hurt. 2 days later, he could barely walk and his fever was spiking to 105...a month of tests later, and he was diagnosed with systemic JRA and put on oral prednisone and naproxen. After about a month, his rheumatologist put him on methotrexate injections weekly. Well, currently, he is no longer taking the pred., and recently we stopped the methotrexate because of severe nausea problems that came on gradually, and ended up getting to the point that my son was throwing up daily...the doctor said his body is having a reaction to it since it has built up in his system. So, he is not on any medication for 3 weeks, and then we see the rheumatologist Feb 27 to talk about what we need to do...my fingers are crossed that he does ok, so far so good. He has done so well, he has had slight complaints of knee pain, but nothing major, and he has been able tobe active and go to school just fine, I feel we have been very lucky. I am so sorry I rambled on so long, but that is our story. Ilook forward to reading and sharing info about this disease, I don't know anyone locally who has a child going through this, so it will be nice to connect with others who know what this is like!Jodi

[Guest guest]

In a message dated 2/19/04 11:24:35 AM Eastern Standard Time,

bc.price@... writes:

<< but I think they are re-thinking lupus, and maybe Crohn's disease. In my

heart I really think she has Still's, for we have seen way too much of the

rash at times. (n, systemic, 15)

----- Original Message ----- >>

Hi :

Are there any particular tests that can run on n to rule out/in Lupus or

Chron's?

Take care.

Patty

[Guest guest]

Jodi,

Welcome to the group. Make yourself at home and post away, we can be quite a chatty bunch. Ive learnt soo much more than i could possibly have found out on the 'net. There is such a wealth of knowledge here.

My son, was dx last summer with systemic. This list has been such a support, I dont know what i would have done with it....

hugs Helen, mom to (6,systemic)

www.caringbridge.org/mn/nicholasb

Hugs..Helen DH Dan DS's (20)(14)(12)Zachary(9)(6)

DD (4)>From: Georgina >Reply- >*JRA List >Subject: Please Welcome Our Newest Member >Date: Wed, 18 Feb 2004 18:57:42 -1000 > >--- RE: The JRA List >Date: Wed, 18 Feb 2004 12:34:19 -0700 >From: "Jodi Dowell" >gmckin@... > >Hi Georgina, > >My son is 8 years old, he will be 9 in March and he was diagnosed with >systemic JRA in July of this year, so we are fairly new to this disease. >It all started (we now believe) 3 years ago when he was 5, he had a >series of sinus infections, followed by severe leg pains, to where he >could not walk. Lots of friends of mine said that their boys had the >same problem around the same age, so it was probably growing pains, so I >gave it a few days, and the leg pains went away. Well, shortly after >that, my son woke up one morning with a rash on his stomach, soon it >spread all over his body, the doctor at the time ( we switched doctors >during this episode) said the rash was an allergic reaction to >something, I figured it was the new kid's soap I had just bought. Well, >about a month later, another sinus infection, and a new antibiotic, >amoxocillin, one that I had told the doctor that he had a slight >reaction to back when he was a baby, the doctor said that's common and >it should be fine... > >well, 14 days into the antibiotic, and my son came down with huge red >welt looking hives, mostly around his stomach area, and soon he spiked a >fever and was back to having leg pains, as well as all over body pains. >Well, this was when we switched doctors (long story about why...) and >the new doctor saw him immediately, and really hesitated to diagnose it >as an allergic reaction to the amox., he felt that the symptoms were >that of syrum sickness, a type of allergic reaction, but he was >concerned about the leg pains and such that had occered before and he >told me he felt something arthritic could be going on...well, I would >not believe my baby had such a disease!! > >All the blood work was done, he had high white cell counts, high sed >rate, negative ana and negative rh...all consistent with either >arthritis or syrum sickness. Well, the doctor ended up putting my son on >oral prednisone for 5 days, and within 2 days, my son felt perfect! >then, about 3 weeks later, my son woke up complaining about his ankle >hurting, and he was limping , I sent him to kindergarten and called the >doctor, he was seen that afternoon, and by then, my son's ankle felt >fine, but the doctor felt some slight swelling, and ordered a bone scan >for fear of a bone infection, bone scan done, everything was normal. > >Fast forward 3 years....everything was fine, my son was >involved in every sport, football, baseball, basketball, very active, >and he felt fine...until the 4th of July this year. He came down with a >sudden fever, and he said his stomach hurt. 2 days later, he could >barely walk and his fever was spiking to 105...a month of tests later, >and he was diagnosed with systemic JRA and put on oral prednisone and >naproxen. After about a month, his rheumatologist put him on >methotrexate injections weekly. Well, currently, he is no longer taking >the pred., and recently we stopped the methotrexate because of severe >nausea problems that came on gradually, and ended up getting to the >point that my son was throwing up daily...the doctor said his body is >having a reaction to it since it has built up in his system. So, he is >not on any medication for 3 weeks, and then we see the rheumatologist >Feb 27 to talk about what we need to do...my fingers are crossed that he >does ok, so far so good. He has done so well, he has had slight >complaints of knee pain, but nothing major, and he has been able to >be active and go to school just fine, I feel we have been very lucky. > > >I am so sorry I rambled on so long, but that is our story. I >look forward to reading and sharing info about this disease, I don't >know anyone locally who has a child going through this, so it will be >nice to connect with others who know what this is like! >Jodi > > Take off on a romantic weekend or a family adventure to these great U.S. locations.