what testing could I ask be done?

Shanny

Apologize in advance, I'm typing on I'm blackberry so forgive typos please.

You have all heard me (esp FB friends) go on and on about Kate's constant fevers/illnesses. I'm beginning to wonder if something is really wrong and would like to ask the doctor for further testing but I'm not even sure what to ask for. A brief overview of the last 7 or so weeks.

Early Sept - Fever, strep test neg, diagnosed with tonsilitis. Dr did a cbc said numbers indicated bacterial infection. Put on antibiotics for 10 days. It took closer to 3 weeks for her to fully recover from this and be herself again. Went in on a Sunday toward the end of the 3 weeks, repeated cbc Dr said numbers were "much better". Speculated that perhaps she caught a virus just as she was kicking the tonsilitis. Suggested giving it a few more days. She seemed to be back to normal a day or 2 after that.

While healthy she was exposed to chicken pox at school so I had her second vax given at the end of Sept rather than waiting until December when she would receive it at her 4 year appt. I don't know if this means anything, just throwing it out there.

Went about 2 weeks without fever then had 2.5 days of fever (103-104, pretty typical for her). Ears were clear, strep test was negative, tonsils looked fine. Another 2.5 days fever free and then last Monday night it came back. Was 105 by Tuesday morning and we went to the Dr. Same old - tonsils looked good, ears were clear, strep test was neg. Dr said she felt like maybe something "was brewing" (no cold or other symptoms just what accompanies a high fever - no appetite, lethargic, sleepy, clingy etc). She gave us a prescription for an antibiotic. I increased Kate's immune boosting supplemenets and took her to the chiropractor to be adjusted as well. The next day she started complaining her left ear hurt. Sure enough there was fluid but no infection yet. We used garlic drops and I also gave her antibiotic eye drops for a few days because my boss got pink eye and I just new she'd catch it with her immune system being what it is! She went to school last Friday but I think she could have used one more day off. She was exhausted Friday night and Saturday morning and I was on the verge of filling the prescription for the antibiotic out of desperation but she took a 3 hour nap on Saturday and was a whole new person when she woke up. She went to school yesterday and today and seemed much better. Then today she fell asleep at 12:45 (much earlier than she normally does if she naps at all) on the sofa with the housekeeper vacuuming around her. I thought it was suspicious but figured she was just still recovering from everything. Normally if she naps now she's up until around 9 but tonight she put herself to bed at 7:45 while I was eating dinner. She's clearly still "off". I should point out that we lay pretty low even on the days she has gone back to school. I make sure she naps, we haven't been going to birthday parties or festivals. We are pretty much at work or home. Haven't been to gymnastics in weeks.

I'm certain there isn't a possible uti, she's had no problems in that area but other than that I am really stumped. The last 2 days she has also gotten a rash behind her ears on her neck. I honetly don't think it is related, I think *maybe* it is an allergic reaction to me putting baby oil behind her ears on Sunday to help clean off the "gunk" that builds up behind her ears. Sigh, I have no idea just throwing it all out there.

Does anyone have any advice on where to begin with further medical testing? Does that sound crazy? Any advice appreciated. TIA.

michgirl

Has she been tested for Mono and Lyme? That is where I would personally start. From way back at the end of Aug. this has sounded like a tic bite to me but I have absolutely no clue where she would have picked up a tic in the Texas heat this summer!!!

Shanny

Thanks Michgirl - you are so right, I remember you brining that up then also. Then symptoms went away, we got an "easy" diagnosis and I forgot all about it! We were in Virginia in early/mid August visiting my Dad who lives on 9 acres in the mountains so yeah, she was definitely in a prime Tick area!

Thanks again for reminding me of this. I really, really appreciate it. I will certainly start here.

Flowergirl

I agree with Michgirl! Her symptoms sound a lot like someone with Lyme's disease from a tick bite. That stuff is nasty and can drag on forever! My former boss's significant other had it a couple years ago and he was so sick the entire summer - his immune system just couldn't keep up and he would feel better for a few days here and there, just like you describe, but would be feeling very sick again in a matter of a little bit.

Mono symptoms can be similar but it usually more makes you draggy and lethargic, and also Mono is considered super contagious so I would think that if she had that, it would have possibly been passed on to the other 2 by now.

The other thing I just randomly thought of - she doesn't pee more than normal or drink lots of extra water (like more than normal) does she? My cousin was just here to visit and her little girl was diagnosed with diabetes at about Kate's age. She mentioned how she went to the bathroom an awful lot and her immune system just wasn't what it should have been. I know for me, I've been a pretty healthy, hearty person my whole life. When I was diagnosed with gestational/possible type 2 diabetes, the Dr warned me that it compromises your immune system. He was not wrong. I feel sick (like a mild flu) often, get tired way more easily, have days where I lose all energy and just feel like I need to sleep for days, and if something is going around, I'm much more likely to get it. I hope that's not it - I just thought I'd mention it too since I thought of it.

I hope you can figure it out!!

kitty

Have the strep test only been the rapid or do they actually culture it
If its only been rapid tell them to try culture it just to see if you have different results.

What about a bact. infection maybe in the intestines, my co-worker just was diagnoised she had fevers but included her being very tired..

tc44la

Being in the Dallas area and knowing West Nile was so bad in that area, has that been mentioned or tested for. The symptoms sound like a fit.

Good luck, I would be concerned too. I hope it gets resolved quickly!
Tara

OneSmallStep

Lyme is a probable one, but when testing for lyme make sure they test properly. There are two types of test, one that gives false negatives but unfortunately is the test that is most commonly done. My (step)mom has lyme's and it took forever for her to be diagnosed. She opted to go with a homeopathic route for medicating though, because the medication they gave her made her more sick than the lyme's had. If it turns out she does have lyme and you are interested in some info on ways to treat it, lemme know and I will be glad to pass the info along to you!

Shanny

Thank you everyone, we go in to the Dr this afternoon and I am going to ask (then demand if they balk) that she be tested for lyme. My sister (who lives in NY) was diagnosed in March and she also spends time at my Dad's house so it is very possible that she and Kate both got it there. If you type in Loudon County and Lyme disease there is an article from 2008 talking about the prevelance of lyme in the area. I will also ask they test for Mono and anything else they can think of is a possibility.

To answer some of the questions - the main issues seem to be: fevers, lethargy, lack of appetite and pain in her lower legs (which I was initially chalking up to growing pains until reading about the joint pain associated with lyme disease). She hasn't had any stomach issues or urinary symptoms - until last night. It was the worst leg pain she has ever complained of. She woke up at 10 complaining mildly so I went to bed with her. She woke up at 12:30 SCREAMING with leg pain and had to go to the bathroom which she normally never does in the middle of the night. I finally got her back to sleep and she woke up again at 5 saying she had to pee BAD, very unusual. I have been researching diabetes because as this has been going on I was watching old seasons of Brothers and Sisters where one of the children gets that diagnosis. I really don't think that is it (hope!) and like I said there haven't been any urinary issues until last night.

Does anyone know which test it is that is better? Or how long it takes to get results.

OSS - if you wouldn't mind I would love to know the natural approach your Mother took to treat her symptoms. I will want to start treating her ASAP if that is in fact what she has so if you wouldn't mind messaging me or putting some information in this post I would be really grateful. My sister had to do 2 rounds of antibiotics and I would really like to avoid that for Kate of possible.

Shanny

Kitty - yes, all her strep cultures have been sent for full testing after the quick in office test.

Trishlettes

Lyme titer with western blot for confirmation. Doxycycline or amoxicillin for 21 days I believe is the only medical treatment for Lymes. Its very effective. Type 1 diabetes she would be eating and drinking more but loosing weight and urinating frequently.

Kari

My best friend from high school is going through lyme disease treatment right now with her 6yo and 22m old. They contracted it in utero from her. She has temporarily left her job and moved three States away to CT where they're treating it more aggressively. If you get this diagnosis and want more info, let me know. I hope, either way, that you get some answers soon.

OneSmallStep

Trishlettes wrote:

Lyme titer with western blot for confirmation. Doxycycline or amoxicillin for 21 days I believe is the only medical treatment for Lymes. Its very effective.

I'd say it depends on who you talk to, for my mom it was very ineffective. Also, it's not just a one and done fix, unless you catch it quickly (though I might be wrong on this.) As far as I understand lymes it is an ongoing illness that once you have, you have (again, there might be a chance if caught early that you can get rid of it?) I know it shows up differently in different people, and that sometimes my mom has to switch up what she is doing a little to keep it under control.

And ya, Shanny, I will ask my mom for all the info and get it to you asap. I've listened to her tell others a hundred and one times, but I don't remember it all and want to make sure to pass the best and most accurate info on to you!

Oh and I do know there's suppose to be a great documentary on it called Under Our Skin (which is available on Netflix.)

michgirl

How did the appointment go yesterday? Did they balk at testing her for things or were they good with it? What did they test for? When will you get results? Is this any of my business? Maybe I am being too nosy! Anyhow update if you feel comfortable!

Shanny

Michgirl - Thanks for asking. I am waiting for the dr to call as I type (not sick to my stomach with worry AT ALL!)

She did not balk at any testing. Kate was very lethargic and her temp was slightly elevated. Her ears and throat were fine too. Coupled with looking through her chart for the last 2 months, and my description of what all has been going on and she didn't hesitate at all.

They did a full EBV panel (when they tested earlier for mono they just did a quick test not this panel)
Lyme disease (she clearly wouldn't have suggested this in a million years because they had to look up what to order, obviously they don't deal with this a lot).
Diabetes (also took a urine sample)
Another full panel of tests she mentioned that is "very general". She said getting a normal result is great but an abnormal result doesn't really tell you what is wrong just that something is and further testing is warranted.

She thought everything would be back today perhaps with the exception of the lyme. I will certainly update when I get some (hopefully good, easy to treat) news!

Shanny

Most of the test results are back. She tested positive for mono but it indicates an "old" infection so if that is what has been going on for the last 2 months she is probably just about done with it. At times mono has certainly seemed obvious but I just don't know if you have times during the illness when you seem completely fine? Lyme seemed more in line with that. One of the tests for lyme can back negative but the other has yet to come back. She said it is the one that would be positive earlier in the illness. I honestly don't know if I'm hoping for it to be positive or negative anymore! Her white cell coount is elevated to the same levels it was last month when she was diagnosed tonsilitis but we don't know where the infection is that is causing that. Today is one of those days where she seems completely healthy so I'm interested to see if she stays this way for more than a day or 2 or if we end of in the cycle again. We will see what the second lyme test comes back as on Monday and go from there. The only real relief is that she did a test that she said isn't very specific but is very sensitive. If there were something like arthritis, cancer it would be positive and Kate's was negative. Other than that I am mostly still sitting here scratching my head.

cocolibby

Mono can definitely behave like that. It's very different in different people - some people have a really aggressive "fast" infection where it's all over within a couple of weeks, but they can lose their spleens and be basically comatose from exhaustion the whole time. Other people can have it drag on for months of on and off fatigue. Hopefully that's all it was, and she's nearly done with the "off" days!

Trishlettes

Yes if you get it early only 10% of people have lingering effects (per literature). If you don't get it early it can be disabling for some. I'm talking strictly medical it's the only treatment the AMA and CDC recommend.

Flowergirl

I'm so happy your Dr. was cooperative with the testing!

I am going to hope it IS just the mono diagnosis and that she is at the tail end of it. Mono does eventually go away where, like has been mentioned, lyme's disease can be a lingering battle. Try not to stress too much over the weekend - hope Monday brings more solid answers!

MommyAndMama

What about staph infection, or even MRSA, a antibiotic resistant staph infection? Has she been showing ANY sort of area where she either gets open sores (even little zits) or tender lumps under the skin the may go away? the more you go to the doctor the better chance of getting staph can be, and it can thrive anywhere including in blood which shows less outward signs. It takes a HUGE burden though on your immune system because your body is so busy trying to fight the staph/MRSA off that it can't defend itself from other things. It can also thrive in the sinuses, so think wether she gets sinus issues.... Just another avenue to look down. Hope you find your answers soon!