*Lurker* -- if it's not JA - then what is it?

[Guest guest]

Hi ... I joined about two months when my 5 y/o daughter's ped

recommended us to see the Rhuemy to determine if her neck pain was

JA. I lurk since we didn't know what she truely had. We finally

went on Thursday and the Rhuemy is pretty sure it's not JA (doesn't

feel any swelling in joints. She said her issue was " loose joints " .

Which should make me estactic as that is something kids grow out of.

On the other hand I don't feel the explanation she gave for her other

syptoms fit or were addressed. I feel at a loss. Nor do I feel

we're out of the woods on this. The symptoms my dd had initially was

neck pain - severe, fever with lethargy. She would have these 5-7

days a week to a point that it was apparent something was wrong

(spending 3-4 hours on couch doing nothing!) Then we realized she

had been complaining about her " legs " for about 6 months and when we

asked where she would point to the top of her ankle. Her first bout

was Nov-Dec (about 6-7 weeks). Then it started again early/mid Feb.

Ped had us give round the clock ibuprofin. This controlled the pain,

but she still had lethargy and fevers of 100-101 (not considered a

fever by doc - but this was ON ibuprofin!). So we took her off the

ibuprofin Thursday and Saturday night she had lethargy and a fever of

104.4 - a fever even by the doc's rules! Sunday her fever was

102.3. During the day she's fine, no fever, no pending cold

symptoms. I'm so fustrated. We see the Rhuemy in 3 mos for a follow

up and she said to call if things get worse. I just *know* something

is up ... I just can't get an answer as to what it is. I'll keep

lurking here for awhile until we get an answer one way or another ...

thanks for reading.

Sherry - worried and fustrated

dd - ne (6 at the end of the month)

[Guest guest]

Hi Sherry,

I'm so sorry to hear about your daughter's symptoms, and that you are

frustrated with the doctors. I think the best thing you can do while

you are waiting for the follow-up visit is keep track of every

symptom she has-note the time and date, especially with the fevers.

If she has any swelling in the joints-take pictures if you can. The

more you have, the better overall picture the doctor will have. If

she continues with symptoms, call the doctor and have her seen

earlier, or maybe look into getting a second opinion. JRA is

sometimes a very difficult and long diagnosis process, depending on

the symptoms of your child. I consider ourselves one of the

fortunate-our daughter was diagnosed within about 2 weeks-but when

you have a 12 month old with a 105 temp-with tylenol and motrin on

board, doctors tend to sit up and take notice. I'm hoping your

daughter isn't in too much pain, and that the doctor at least gave

her something for when the pain is there.

Hang in there and know that you are doing the very best for your

child.

Tracey and Madi 2yr systemic

>

> Hi ... I joined about two months when my 5 y/o daughter's ped

> recommended us to see the Rhuemy to determine if her neck pain was

> JA. I lurk since we didn't know what she truely had. We finally

> went on Thursday and the Rhuemy is pretty sure it's not JA (doesn't

> feel any swelling in joints. She said her issue was " loose

joints " .

> Which should make me estactic as that is something kids grow out

of.

> On the other hand I don't feel the explanation she gave for her

other

> syptoms fit or were addressed. I feel at a loss. Nor do I feel

> we're out of the woods on this. The symptoms my dd had initially

was

> neck pain - severe, fever with lethargy. She would have these 5-7

> days a week to a point that it was apparent something was wrong

> (spending 3-4 hours on couch doing nothing!) Then we realized she

> had been complaining about her " legs " for about 6 months and when

we

> asked where she would point to the top of her ankle. Her first

bout

> was Nov-Dec (about 6-7 weeks). Then it started again early/mid

Feb.

> Ped had us give round the clock ibuprofin. This controlled the

pain,

> but she still had lethargy and fevers of 100-101 (not considered a

> fever by doc - but this was ON ibuprofin!). So we took her off the

> ibuprofin Thursday and Saturday night she had lethargy and a fever

of

> 104.4 - a fever even by the doc's rules! Sunday her fever was

> 102.3. During the day she's fine, no fever, no pending cold

> symptoms. I'm so fustrated. We see the Rhuemy in 3 mos for a

follow

> up and she said to call if things get worse. I just *know*

something

> is up ... I just can't get an answer as to what it is. I'll keep

> lurking here for awhile until we get an answer one way or

another ...

> thanks for reading.

>

> Sherry - worried and fustrated

> dd - ne (6 at the end of the month)

>

[Guest guest]

Hi Sherry.

I understand your frustration, as we are going through the same thing. My daughter, Devon (8), runs high fevers, and complains of knee, hip, and elbow pain. She has also had abnormal blood work. The Rheumy we saw in January said it wasn't JRA, but felt it was a fever syndrome of some sort. The Ped thinks it is JRA, and is just taking it's time coming out. We go again to see the Rheumy on May 18th, and hope to get some answers. It is a horrible feeling seeing your child laying on the couch in pain, with a high fever, and the Doctors can't seem to figure it out. I know eventually they will come up with an answer for us, but in the mean time, we just keep pumping the ibuprofen into her, and praying it doesn't get worse.

Kirsty

*Lurker* -- if it's not JA - then what is it?

Hi ... I joined about two months when my 5 y/o daughter's ped recommended us to see the Rhuemy to determine if her neck pain was JA. I lurk since we didn't know what she truely had. We finally went on Thursday and the Rhuemy is pretty sure it's not JA (doesn't feel any swelling in joints. She said her issue was "loose joints". Which should make me estactic as that is something kids grow out of. On the other hand I don't feel the explanation she gave for her other syptoms fit or were addressed. I feel at a loss. Nor do I feel we're out of the woods on this. The symptoms my dd had initially was neck pain - severe, fever with lethargy. She would have these 5-7 days a week to a point that it was apparent something was wrong (spending 3-4 hours on couch doing nothing!) Then we realized she had been complaining about her "legs" for about 6 months and when we asked where she would point to the top of her ankle. Her first bout was Nov-Dec (about 6-7 weeks). Then it started again early/mid Feb. Ped had us give round the clock ibuprofin. This controlled the pain, but she still had lethargy and fevers of 100-101 (not considered a fever by doc - but this was ON ibuprofin!). So we took her off the ibuprofin Thursday and Saturday night she had lethargy and a fever of 104.4 - a fever even by the doc's rules! Sunday her fever was 102.3. During the day she's fine, no fever, no pending cold symptoms. I'm so fustrated. We see the Rhuemy in 3 mos for a follow up and she said to call if things get worse. I just *know* something is up ... I just can't get an answer as to what it is. I'll keep lurking here for awhile until we get an answer one way or another ... thanks for reading.Sherry - worried and fustrateddd - ne (6 at the end of the month)

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.467 / Virus Database: 269.6.5/792 - Release Date: 5/6/2007 9:01 PM

[Guest guest]

Hi Sherry.

I understand your frustration, as we are going through the same thing. My daughter, Devon (8), runs high fevers, and complains of knee, hip, and elbow pain. She has also had abnormal blood work. The Rheumy we saw in January said it wasn't JRA, but felt it was a fever syndrome of some sort. The Ped thinks it is JRA, and is just taking it's time coming out. We go again to see the Rheumy on May 18th, and hope to get some answers. It is a horrible feeling seeing your child laying on the couch in pain, with a high fever, and the Doctors can't seem to figure it out. I know eventually they will come up with an answer for us, but in the mean time, we just keep pumping the ibuprofen into her, and praying it doesn't get worse.

Kirsty

*Lurker* -- if it's not JA - then what is it?

Hi ... I joined about two months when my 5 y/o daughter's ped recommended us to see the Rhuemy to determine if her neck pain was JA. I lurk since we didn't know what she truely had. We finally went on Thursday and the Rhuemy is pretty sure it's not JA (doesn't feel any swelling in joints. She said her issue was "loose joints". Which should make me estactic as that is something kids grow out of. On the other hand I don't feel the explanation she gave for her other syptoms fit or were addressed. I feel at a loss. Nor do I feel we're out of the woods on this. The symptoms my dd had initially was neck pain - severe, fever with lethargy. She would have these 5-7 days a week to a point that it was apparent something was wrong (spending 3-4 hours on couch doing nothing!) Then we realized she had been complaining about her "legs" for about 6 months and when we asked where she would point to the top of her ankle. Her first bout was Nov-Dec (about 6-7 weeks). Then it started again early/mid Feb. Ped had us give round the clock ibuprofin. This controlled the pain, but she still had lethargy and fevers of 100-101 (not considered a fever by doc - but this was ON ibuprofin!). So we took her off the ibuprofin Thursday and Saturday night she had lethargy and a fever of 104.4 - a fever even by the doc's rules! Sunday her fever was 102.3. During the day she's fine, no fever, no pending cold symptoms. I'm so fustrated. We see the Rhuemy in 3 mos for a follow up and she said to call if things get worse. I just *know* something is up ... I just can't get an answer as to what it is. I'll keep lurking here for awhile until we get an answer one way or another ... thanks for reading.Sherry - worried and fustrateddd - ne (6 at the end of the month)

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.467 / Virus Database: 269.6.5/792 - Release Date: 5/6/2007 9:01 PM

[Guest guest]

Sherry,

I am so sorry to hear about your daughter's troubles. This sounds

very much like my daughter's problems. She has been seeing a

rheumatologist since 2003, but was first diagnosed

with " hypermobility joint syndrome " , and yes, we were told also that

this was a condition that children simply outgrow and not to worry

about it. Miranda's blood work has always been " normal " up until this

past summer when her new rheumy (we moved) noted swelling in her

hands on physical exam. She now has the diagnosis of JIA. She is on

several meds, including methotrexate. The fevers and rashes are

usually gone before I can get her to the pedes or rheumy, and are

usually considered to be some sort of virus she is fighting. I urge

you to continue speaking with the rheumy about your daughter's

symptoms, but relax a bit too. It is a long, frustrating road for

many of our children until the diagnosis comes, but having a label

doesn't speed up the recovery much, either (at least not in my

daughter's case).

I sure hope your daughter really does have " hypermobility joint

syndrome " , and is spared the arthritis label.

Sheila

Miranda, 11, JIA/MMD

> Sherry - worried and fustrated

> dd - ne (6 at the end of the month)

>

[Guest guest]

I wanted to jump in here and add my 2 cents about this. Hypermobility Joint Syndrome is a real thing and is listed on the Arthritis Foundation web-page as a "non-inflammatory" type of arthritis. Overuse syndrome is also in this category and the 2 often go together. Both my daughter and I have these syndromes. That does not mean your child does not have arthritis or that she will outgrow it (I have it and am almost 40). Both can cause the same pain as arthritis. The good news is that you most likely won't have the damage like in RA. But, in my case both of these have led to a diagnosis of osteoarthritis. Hannah is still classified as unspecified arthritis.

You're right that a lot of our kids have a long road. We've been dealing with this for over year now. I just do not want you to think that just because your daughter was told she has hypermobility syndrome, that you should give up. Keep track of her symptoms, take pictures of any swelling or rashes. I personally kept a diary for Hannah for almost a year. I now tend to only document when she is flaring.

Just wanted to share another point of view.

Beth & Hannah, 10 unspecified arthritis; asthma; gerd; migraines

Sending prayers & happy thoughts,

Beth :-)

Re: *Lurker* -- if it's not JA - then what is it?

Sherry,I am so sorry to hear about your daughter's troubles. This sounds very much like my daughter's problems. She has been seeing a rheumatologist since 2003, but was first diagnosed with "hypermobility joint syndrome", and yes, we were told also that this was a condition that children simply outgrow and not to worry about it. Miranda's blood work has always been "normal" up until this past summer when her new rheumy (we moved) noted swelling in her hands on physical exam. She now has the diagnosis of JIA. She is on several meds, including methotrexate. The fevers and rashes are usually gone before I can get her to the pedes or rheumy, and are usually considered to be some sort of virus she is fighting. I urge you to continue speaking with the rheumy about your daughter's symptoms, but relax a bit too. It is a long, frustrating road for many of our children until the diagnosis comes, but having a label doesn't

speed up the recovery much, either (at least not in my daughter's case). I sure hope your daughter really does have "hypermobility joint syndrome", and is spared the arthritis label. SheilaMiranda, 11, JIA/MMD> Sherry - worried and fustrated> dd - ne (6 at the end of the month)>