older daughter getting rheum labs now | Arthritis Information

 

Still having a bad week with my older daughter.  After the breathing problems at the swim meet, she used the inhaler Sat. to play her instrument and it made a huge difference and we were happy.

Then Sunday, she started running a high temp.  Even with Tylenol, it hasn't been normal since then.  It stays around 101 - 102 without Tylenol.  Last night, it went to 103.

Here we are at Wed. morning, and she woke up at 100.5, so we were thinking that was better, but now it is over 101 again.

Monday morning, she passed out cold.  Ped said must be viral, strep came back negative, lungs are good.  But her BP was 90/38 and they wouldn't let us leave until it went up.

Ped called yesterday to check on her, and I said I was concerned because she hasn't been 'right' since that weird leg thing (some of you may remember Dr. Neat?).  She said, "And her alllergies started up right after that..." and said to come back in.

Urine and CBC were fine.  So we are waiting on all the rheum stuff, she said even without joint pain sedrate could be elevated causing other inflammation.

Our book says if it is systemic JRA, the temp would go to normal at least once a day.  Since that hasn't happened, I guess that is good, but of course nothing ever really goes like it should.

I was glad about the CBC, with the WBC being normal.  Until I remembered they put my younger one in the hospital with a PICC line and also still ruled out cancer, and her WBC was normal and she had NO fever.
Suzanne2008-06-18 08:25:08Just hang on Suzanne - it sounds like some sort of viral thing. 

Keep us posted Suzanne- hope things clear up and she's better soon! Sorry you are having to worry so- kids being sick tend to do that to you!Oh gosh, Suzanne, this is rough.  Hang on tight and please, keep us posted.  No doubt the doctor will come up with an answer.  Your pediatrican sounds very competent.  Thank you all.  She still has a 101.5 temp, but is doing well enough to have screwed up her cellphone to the point it will only allow 911 calls (hope that isn't a sign....) so now I am worried about her and very mad at her at the same time LOL. Woke up with a 100.9 temp today.

Ped called and said rheum labs are absolutely perfect - WOO HOO!!!

Since we had talked about bacterial and viral infections, I asked if it could be a fungal infection she picked up around the pool.  She said she would be a lot sicker, hospitalized.

So what the heck is wrong with her?  Ped said if it were winter, she would be sure it was the flu.  I asked if we should get her tested - I know they can't treat it, but I think we need to know - we are supposed to get on an airplane Sunday, and will have to cancel.

The ped said give it another day.  She said we still had time before Sunday.
[QUOTE=Suzanne]Thank you all.  She still has a 101.5 temp, but is doing well enough to have screwed up her cellphone to the point it will only allow 911 calls (hope that isn't a sign....) so now I am worried about her and very mad at her at the same time LOL. [/QUOTE]

sounds like she messed up the connection settings.  If the account connection settings to the carrier are messed up, the phone will only be able to call 911.  Take the phone to the nearest retail outlet for your carrier and they should be able to reset the connection for you.  You can also call customer service and they can probably walk you through it. I've managed to kick myself off the T-mobile network a few times. I would hate to work in a cellphone store.  Can you imagine what they see?  The stories they hear?  One time, they offered some insurance and I was like, 'for what?', and they said, oh, if you drop in it the toilet..... [QUOTE=Suzanne]I would hate to work in a cellphone store.  Can you imagine what they see?  The stories they hear?  One time, they offered some insurance and I was like, 'for what?', and they said, oh, if you drop in it the toilet..... [/QUOTE]

LOL I know.  Back in the days of the pager, I dropped my pager in the toilet at work, and also sent it through the washer and dryer (it was in my coat).  Both times it worked just fine after drying out for a few days.  Gotta love Motorola!  I certainly didn't want to go tell my boss I dropped my pager in the toilet or sent it through the laundry... I already had a reputation of being an absent-minded scientist. [QUOTE=Suzanne]
Still having a bad week with my older daughter.  After the breathing problems at the swim meet, she used the inhaler Sat. to play her instrument and it made a huge difference and we were happy.Then Sunday, she started running a high temp.  Even with Tylenol, it hasn't been normal since then.  It stays around 101 - 102 without Tylenol.  Last night, it went to 103.Here we are at Wed. morning, and she woke up at 100.5, so we were thinking that was better, but now it is over 101 again.Monday morning, she passed out cold.  Ped said must be viral, strep came back negative, lungs are good.  But her BP was 90/38 and they wouldn't let us leave until it went up.Ped called yesterday to check on her, and I said I was concerned because she hasn't been 'right' since that weird leg thing (some of you may remember Dr. Neat?).  She said, "And her alllergies started up right after that..." and said to come back in.Urine and CBC were fine.  So we are waiting on all the rheum stuff, she said even without joint pain sedrate could be elevated causing other inflammation.Our book says if it is systemic JRA, the temp would go to normal at least once a day.  Since that hasn't happened, I guess that is good, but of course nothing ever really goes like it should.I was glad about the CBC, with the WBC being normal.  Until I remembered they put my younger one in the hospital with a PICC line and also still ruled out cancer, and her WBC was normal and she had NO fever.


Suzanne. I have a question. May I ask why your younger daughter had a PICC? Does she have a chronic illness? I'm not familiar with past posts on this.
[/QUOTE] She had a PICC when she first got sick with what they now have dx'd as JRA.  She was treated for an unknown infection (ped says some papers somewhere say 'multi-focal osteomyelitis'), and we saw her improve (and it says that on her hospital discharge papers), but when no infection was proven, the antibiotics were stopped.   To this day, I feel like if she could have stayed on them until her inflammation was completely gone, she would be fine now.  When she was admitted, her right wrist would not move up or down.  While she was on the PICC line, she got back normal flexion, her sedrate went to normal, too.    Wow, that is too bad. Are you thinking of AP theray for her?That's what she is on now.  She takes Zith MWF and nothing else.  We do not have to treat pain, but she has visible swelling still and we know things are not perfect. 

She will have a checkup and xrays soon, and we will have to decide how to proceed from there.  Hopefully her xrays will show no progression and that she has remained stable.  Otherwise, we are in for some hard decisions.  Regardless, we are happy that she has gone this far doing everything a little girl should be able to, never missing a beat.  With a dx of severe poly JRA, things could be much worse.
I never had a sick child and it saddens me that anyone has to. I hope she gets over this very soon and has no long lasting problems. [QUOTE=lorster]I never had a sick child and it saddens me that anyone has to. I hope she gets over this very soon and has no long lasting problems. [/QUOTE]

Thanks, lorster.  We have accepted that she does having lasting problems, though, but she functions fine with them.  Her wrist has permanent damage, we know.   It was called a 'deformity' at our first ped rheum visit.  Her damage occured while the peds were telling me there was nothing wrong with her and then while we waited forever to get in with a ped rheum.
That is too bad. I think doctors can brush things off because after all, they are children and nothing can happen to them. I also see this with many other groups because people this age don't get sick. I'm glad you have pushed and pushed. I got rheumatic fever when I was 8 (I think that is why I have RA today) and my mom kept taking me in and finally a doctor told her she was a hypochondriac mother and needed to quit it. I ended up hospitalized for 5 weeks. Doctors need to listen to the parents. You know your child and doctors need to listen.

Lorster - that is why you have RA today.  JSNM is the same. 

I've pushed as much as I can with my older daughter's ped on this one, and I'm thinking of hitting Urgent Care once the ped's office closes today.....her temp just hit 102.5.  This is earliest in the day it has gone that high, which does not signal an ounce of improvement, does it?  Means worse, right??? Suzanne, someone else in here who has a son named Liam is having fevers like you are describing.  I don't know how high of a temperature rates a trip to ER.  Keep us informed.  PS  I had scarlet fever at 3 years old.  At least I waited until we had done Disneyland in 1959 :)  WELL WELL WELL.  Struggled with the decision to go to Urgent Care.  Even called first, said what the ped was saying, asked if it was worth a trip in.  They said they would be happy to look at her, but of course couldn't guarantee we'd hear anything different.

THEY SENT US TO THE ER FOR IV ANTIBIOTICS!!!!!!!!!!!!!!!!!!

Her temp was 103.1 when we arrived.  Got their attention.  I told the dr. everything that had been ruled out so far, and he said let's get a chest xray.

Things sure got quiet amongst the staff after that.

He came and got me and said,  "I want you to look at this."  I was like, what, did she break a rib when she passed out?  He kind of laughed and said no, but you have to see this.

As if I know what a chest xray is supposed to look like.....but he said she has pneumonia, and this is bad.  "Look at it, I think she needs to go to the ER.  I think she needs IV antibiotics."

And, of course, that made me scared/happy and also start crying at the same time.  I was thanking him and thanking him, saying I knew something was wrong and I was glad we found out so she could get better.

They gave us the xray to take with us.  We have a children's ER we can go to, so it wasn't bad.

Motrin at Urgent Care had her temp down to 101.3 when we got there, so they weren't freaking out.  But after they looked at the chest xray,  the resident came in and said most patients would be curled up in a fetal position, he couldn't believe how good she looked.  He said she had  pneumonia and by how she looked, it could be treated at home, but  the xray showed an "impressive" infection.

Then the attending came in and asked a zillion questions and did a more thorough exam, said "impressive" a lot.  He seemed on the fence about how to treat, too, and I said please, she has been so sick all week and looks terrible when the Motrin wears off, please don't go by how she looks to you, please go by what the labs and xrays show, I know how she usually is and I know this is bad for her.

So the nurse came back in for a blood culture and started IV antibiotics.  After the first bag, the resident came back and said it was looking bacterial and they started a second type of abx.  Then they said after she got fluids, they would have her walk up and down the hall and if her oxygen level stayed up, she could go home, but if not they would admit her. 

By then, it was like 2:00 a.m. and there were security guards in the hall.  They were teasing her,  saying "America's Next Top Model" and "Work it", and the resident was like, "Don't give her a hard time, she's working with only half a lung!"  But she 'passed' so we got to come home.

Talked to the ped this a.m., she is in shock!  I was like, I knew, I knew.  She thinks maybe she inhaled some pool water.  And she gave me her cellphone number, to have while we are on vacation next week.  She is also considering adding a second abx to the amox, to make sure everything is covered.

Unreal.


Oooh, at least this is a fast fix! Just gave her some probiotics.  Her stomach is already a wreck, poor thing.  I can't do yogurt for her because of the dairy, but thankfully my most favorite pharmacist was there when I filled the amox and he confirmed what I picked out would work.  It's an acidopholus capsule that I can open and sprinkle in her food, since she still can't/um, won't in my opinion swallow pills.

Not swallowing pills means her amox rx would basically be jug-size and we are traveling on a plane.  So again, thanks to my favorite pharm, he mixed it in 3 oz. bottles for us.  Love him!
Suzanne, bacterial pneumonia is bad. Thankfully there are antibiotics to treat this and she will be better very soon. It was good that you took her in. You went with your gut and that is good. Lets hope her blood cultures are negative but now that she is on the antibiotics...it is all good from here.

The other thing, bacterial pneumonia comes on very quickly, and the person can get very sick, very quick. They said if it was viral pneumonia, it would be kind of all over her lungs.  You can see a definite  'clump' on the left upper lobe, they said that meant bacterial pneumonia.

Lorster, she's been very sick all week. That is why this is so upsetting.   I should have gone to Urgent Care on Tuesday!  I knew she was too sick, but for whatever reason, she looked too 'good' to the ped.  I don't get it, they thought she looked too 'good' to be so sick last night, too.

Good news - temp is down to 99.9!!!  It hasn't been that low without  Motrin or Tylenol since Sunday!  So I think the meds are working for sure.  This is the time of day it has been going up, up, up, too.
Suzanne2008-06-20 10:41:34Ped called and now the verdict is.....mycoplasma!  She wants her on Zith, too.  Can you believe it?

She said it fit better with the normal WBC and also that an inhaler would help a mycoplasma infection but not a bacterial one.  So she wants her on both abx, to cover everything.  One of the IVs last night was Zith, so that could be what has helped today and not the amox.

Sigh.  Airport security should be a lot of fun.
Suzanne - oh my.  I am so glad they figured it out.  Huggles ~~ CathyI am so glad they did the chest exray and found this. Keep us posted. Really glad they did the iv antibiotics. Moms always know.  Good job Suzanne.  How many parents would have just continued the course of fever reducers etc. because they didn't listen to the little voice inside.  We have to trust our gut.Thanks so much, everyone!

Her temp has been back to her normal 97's for more than 24 hours, so we feel like everything is going to be okay.   I stripped and cleaned her room all day yesterday.

We are heading out for a week's vacation today with all the involved drs. blessings (plus the ped's cellphone number) and a gallon Ziplock full of meds.  I've also got a spiral ring notebook, to keep track of this 3 x day Amox!  With the travel and a time change, I think I need to record it so I don't get confused.

Wish me luck.  If I hit a jackpot in Vegas, I'll spring for internet access and let you know!  Take care everybody.
Suzanne. One thing that differentiates a kid from an adult when it comes to being sick is that they look good until they don't, then it is downhill quickly from there. Kids are able to compensate for a long period of time and then they crash quickly. You did the right thing and I'm glad she is on the mend.Suzanne - Have a good vacation.  Hope everyone stays healthy so they can have a great time.  Have a great time of vacation--you guys deserve it!Suzanne - good luck and have a good time!  Cathy We're b-a-c-k!!!!!  Had a great time!  My daughter got out of breath in the airport, but did well otherwise during the first leg of the trip, when we were just taking it easy.  We got to Vegas midweek, and the ped even called me on the cell to check on her on Thursday!  She was glad to hear things were going well, but wants me to bring her in this week so she can check her out.

I'm fine with that, of course.  And then Friday, while my daughter was swimming, she asked if we had the inhaler.  WHAT??????  I said no, and I was hoping she wouldn't need it anymore, that the trouble was from the pneumonia.

So either the pneumonia is still around, or she is so allergic to dairy now that taking the cheese off pizza isn't enough anymore.  That was the first day she had eaten that the whole trip.
Suzanne2008-06-29 14:42:51 [QUOTE=Suzanne] We're b-a-c-k!!!!!  Had a great time!  My daughter got out of breath in the airport, but did well otherwise during the first leg of the trip, when we were just taking it easy.  We got to Vegas midweek, and the ped even called me on the cell to check on her on Thursday!  She was glad to hear things were going well, but wants me to bring her in this week so she can check her out.

I'm fine with that, of course.  And then Friday, while my daughter was swimming, she asked if we had the inhaler.  WHAT??????  I said no, and I was hoping she wouldn't need it anymore, that the trouble was from the pneumonia.

So either the pneumonia is still around, or she is so allergic to dairy now that taking the cheese off pizza isn't enough anymore.  That was the first day she had eaten that the whole trip.
[/QUOTE]

It can take a while to recover from pneumonia; perhaps the pool chemicals in the air annoyed her still-healing lungs.
Let us know how she makes out at her check up! Best of luck!Thanks everyone!  We have an appt. tomorrow at 11:15.

Jas - maybe it is something to do with the pools, but earlier in the week she swam okay in a chlorinated pool and the pool she had the problem in was saltwater.  She could have just been pushing herself a little harder, though.  Hopefully we'll sort it all out in next couple weeks.  She sees the allergist next week.

Damn!  Do you know how many co-pays are headed my way in the next couple weeks????  My little one is going to the ped opth this week, too.
Glad you had a good trip. [QUOTE=Suzanne]Thanks everyone!  We have an appt. tomorrow at 11:15.

Jas - maybe it is something to do with the pools, but earlier in the week she swam okay in a chlorinated pool and the pool she had the problem in was saltwater.  She could have just been pushing herself a little harder, though.  Hopefully we'll sort it all out in next couple weeks.  She sees the allergist next week.

Damn!  Do you know how many co-pays are headed my way in the next couple weeks????  My little one is going to the ped opth this week, too.
[/QUOTE]

There are lots of different pool water disinfecting systems out there; I've known quite a few swimmers who became hypersensitive to some of the systems - one friend in particular became sensitive to the point of not being able to stay in the same hotel wing as a pool.

Also, some pools have way more disinfectant than needed - it's easier to dump in the chemicals than it is to perform proper cleaning and maintenance.

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