Lymes Scare? Am I overreacting? WWYD?

[Kerileanne99]

I am probably totally overreacting? probably. I know this. Blame it on dd4 being an only child and the fact that I have too much time to read about Lymes on the Internet:(

 

Here is the situation: dd woke up in the night last Friday with a fever and a headache. Her temperature measured at 103.6 (ear) and she alternates between very hot and shivering. I gave her ibuprofen and by Saturday she seemed better. She still had a fever (between 100-102 F) all weekend, but had no major symptoms. She was lethargic, but was still interested in normal activities. Definitely decreased appetite but still drinking and voiding properly.

We don't tend to panic here, even though this fever is higher than she typically gets with her chronic ear infections.

 

However, her fever has persisted. Her temperature tends to lower during the day, never lower than 100F nor higher than 101F during the day (still primarily asymptomatic) but goes up at night. Last night it got up to 103.6F.

But she has been complaining of her back aching. I honestly wasn't sure of this because I get chronic backaches and so she has heard it from me. But she is not a complainer about physical issues. She also had a couple of intense leg pains, stomach aches, and GI issues. Other than that she is her active, bouncy, loud enthusiastic self...until she isn't and curls up on the sofa or on the floor. That alone is very unusual:)

Normally I would consider it kiddie crud, but as the fever has persisted for now 6 days I took her to the pediatrician. Her normal ped was gone. The ped we saw was concerned enough to order bloodwork. Mono test was neg, rapid strep neg, but CBC showed elevated WBC count.

 

I mentioned at the time that we had been traveling extensively this summer, including camping in places like Yellowstone and Rocky Mountain State Park and asked about Lymes. Both hubby and myself removed ticks from ourselves, but never found one on dd. The dr. blew it off since Alex did not have a rash.

It wasn't until I was driving home that I realized I had taken Alex in to the ped six weeks ago (right after we returned home) for an unexplained rash. No cause was determined, although it covered her torso. It eventually went away on its own, and was definitely not a bullseye pattern.

 

So. I am feeling a bit paranoid. She is currently asleep but has woken up twice with night sweats tonight. I phoned ped on call (the same one I saw today) with my concerns and she insisted it was probably just a virus and to monitor it. I just can't see the harm in testing. I could almost hear her roll her eyes over the phone:(

She still refused to order testing as she wants to wait it out.

 

Am I paranoid? WWYD? Should I just wait it out? I can't help feeling like a test and possible antibiotics are so much more reasonable than risking permanent damage and the horror that this disease causes.

 

Feel free to reassure me I am an overprotective mom of an only who is completely overreacting here!

[Catwoman]

Forget about testing. The tests could still come back negative even if she has Lyme.

 

Demand a course of antibiotics. Assume it's Lyme Disease if you think there is any chance that it might be. You can get her tested after she finishes the course of antibiotics to see if Lyme is present and whether or not she needs more treatment.

 

Her symptoms may very well disappear for a while, even with Lyme, and that's why the precautionary antibiotics are so important.

[kewb]

Since my dh is currently on iv antibiotics for his undiagnosed for 30 years chronic Lyme I would insist on getting your child tested. The earlier you treat the better.

[JennyD]

Wow, I am rather surprised that your (substitute) ped brushed this off.  By way of contrast, when I took my DS9 in for his annual checkup back in May, the ped gave us an emphatic lecture about the need to not only use bug repellent and check for ticks, but also promptly bring in any child with a fever of over about 102 during the summer.  There is very little Lyme here (I'm in TN) but Rocky Mountain Spotted Fever is a real concern.  

 

When is your regular ped coming back?  Is it possible for you to talk with him/her?  

[Katy]

Has she had a history of kidney infections?  Did they test her urine?

 

Generally if you go to a walk-in clinic and say you found an engorged tick on her they'll give you preventative antibiotics, but I wouldn't do that as those antibiotics aren't harmless.

[Kerileanne99]

When is your regular ped coming back? Is it possible for you to talk with him/her?

Her regular ped will be back on Monday. I most definitely plan to talk to him. He has 8 kids of his own and has experienced personally just about everything you can imagine, which is one of the reasons we chose him:)

 

We live in Texas.

[Spryte]

Night sweats, high fever. Possible tick exposure.

 

She needs a test for Babesiosis.. Ask for tests for Babesia Microti and Babesia Duncani (or it may be listed as WA-1). Also erlichiosis.

 

Those tests may not be conclusive. But you have to try.

 

Babesia needs different meds, not the usual antibiotics.

 

Also, go in with a list of the places you traveled and some research to back up that there is babs, Lyme, etc in the area. Our local doc thought babs was a tropical disease only and was shocked to hear how common it is where we live. She now routinely tests and finds cases.

 

There are other TBDs to be concerned about, but the behavior you listed made me think immediately of babs and erlichiosis.

[Kerileanne99]

Has she had a history of kidney infections? Did they test her urine?

 

Generally if you go to a walk-in clinic and say you found an engorged tick on her they'll give you preventative antibiotics, but I wouldn't do that as those antibiotics aren't harmless.

No, they didn't check urine, and she doesn't have a history of kidney infections. This kid is ridiculously healthy. She does get ear infections, which we probably miss most of as she never complains.

We rarely do antibiotics as she is allergic to several. I wonder how much that has to do with the substitute peds unwillingness to treat preventatively? Maybe the 'wait-it-out' is more of a 'wait until her doctor is back'?

[Catwoman]

Generally if you go to a walk-in clinic and say you found an engorged tick on her they'll give you preventative antibiotics, but I wouldn't do that as those antibiotics aren't harmless.

If you ask almost anyone who has had Lyme Disease, they will tell you that the antibiotics are definitely a lesser evil than ending up with Lyme Disease, and if you can catch it before symptoms start, the patient may never develop any symptoms at all. If you wait until symptoms are present, it can take a lot more effort to get rid of it.

[Muttichen]

When my kids were small, they often got a high fever in the summer that hung on a long time.  Then when the fever finally broke, they'd get a rash.  It was a virus -- roseola or something like it.  I wouldn't worry.

[Kerileanne99]

Night sweats, high fever. Possible tick exposure.

 

She needs a test for Babesiosis.. Ask for tests for Babesia Microti and Babesia Duncani (or it may be listed as WA-1). Also erlichiosis.

 

Those tests may not be conclusive. But you have to try.

 

Babesia needs different meds, not the usual antibiotics.

 

Also, go in with a list of the places you traveled and some research to back up that there is babs, Lyme, etc in the area. Our local doc thought babs was a tropical disease only and was shocked to hear how common it is where we live. She now routinely tests and finds cases.

 

There are other TBDs to be concerned about, but the behavior you listed made me think immediately of babs and erlichiosis.

Oh wow. Thanks for the tip. I had to look it up, and a few things really stuck out. She has been complaining about her eyes, as well as saying 'her breath was too hot.' I took this to be just from having a fever, and it may well be...but something to ask about.

Also it is definitely her calves and feet that are cramping.

She is quite verbal, but is still only four. Language and description is still ambiguous:(

[Catwoman]

Oh wow. Thanks for the tip. I had to look it up, and a few things really stuck out. She has been complaining about her eyes, as well as saying 'her breath was too hot.' I took this to be just from having a fever, and it may well be...but something to ask about.

Also it is definitely her calves and feet that are cramping.

She is quite verbal, but is still only four. Language and description is still ambiguous:(

It's so hard when they're little. :grouphug:

[whitestavern]

I had Lyme with a rash that was about 12 quarter size perfectly round red spots. No bullseye. The rashes vary. I would insist on testing and insist on the western blot test. If it comes back neg but she is still experiencing symptoms I might demand antibiotics. If its something else the symptoms could go away in that time period.

[fdrinca]

The reason I'm so glad to have moved out of Tick-a-topia is because those stupid deer ticks are SO TINY that even if you think you've checked everywhere, you probably haven't. I personally know of three people back in Eastern PA who have contracted Lyme because they had "cheeky" ticks, if you know what I mean. 

 

Ask for tests. Don't brush it off. Especially if it's out of step with your child's typical health patterns. The bulls-eye rash isn't required. Your ped should know this. I hope your dd feels better soon!

[gaillardia]

The reason I'm so glad to have moved out of Tick-a-topia is because those stupid deer ticks are SO TINY that even if you think you've checked everywhere, you probably haven't. I personally know of three people back in Eastern PA who have contracted Lyme because they had "cheeky" ticks, if you know what I mean. 

 

Ask for tests. Don't brush it off. Especially if it's out of step with your child's typical health patterns. The bulls-eye rash isn't required. Your ped should know this. I hope your dd feels better soon!

 

What area do you live in that you consider it being "out of Tick-a-topia"?

A friend's early 30's dd was just diagnosed with it. They live in Maryland. Brother-in-law's sister's daughter was just diagnosed with Lyme, they also live in Maryland. Friend's son was covered by deer ticks in groin one summer after riding a pony near OC, MD. He was diagnosed with it. Strangely, the bull's eye rash developed while he was at their doctor's office.

 

[fdrinca]

What area do you live in that you consider it being "out of Tick-a-topia"?

A friend's early 30's dd was just diagnosed with it. They live in Maryland. Brother-in-law's sister's daughter was just diagnosed with Lyme, they also live in Maryland. Friend's son was covered by deer ticks in groin one summer after riding a pony near OC, MD. He was diagnosed with it. Strangely, the bull's eye rash developed while he was at their doctor's office.

 

Coastal California. There are ticks, but we were living in woods in Eastern PA before moving out here. It was common to remove a deer tick at least monthly, if not more frequently, from some member of our family. I really began to resent the amount of time it required. 

[Pawz4me]

I would be persistent in seeking a test for tick borne diseases.  And I mean that in the plural.  As others have pointed out, there are quite a few of them, and some are much more serious than Lyme Disease.

[Soror]

:grouphug:  :grouphug:  :grouphug:  :grouphug:

 

I'm not lyme informed but considering she is having persistent issues it seems prudent to me to at least test for TBD. 

[kewb]

Lyme and it's coinfection friends are everywhere in the US. Even in places where docs tell you it isn't. My dh has the trifecta lyme/bartonella/babesia.

[Momof3littles]

I would request a urine test for her in case she is dealing with a UTI or kidney infection.  Any chance she's a bit dehydrated and that's causing some of the leg cramps?

 

That said, we went through a scary bout of assumed Lyme with DH last year and we did abx despite no rash and no positive test. He did test + for two coinfections, and had symptoms consistent with Lyme (joint pain, burning nerve pain in his legs, massive headache, extreme fatigue, etc.).  We also live in Lyme central, so we found a Lyme doc and got him on abx.  He was improving within days.  We typically avoid antibiotics unless absolutely necessary, but in my own kids, I now think we will ask for antibiotic treatment for suspected tick bites.  I used to think that was crazy (treating without symptoms or confirmation of Lyme), but our experience was so scary, I would consider it.

[Vera]

I haven't read the other replies but I would insist that the doctor start treating for Lyme. I don't medicate myself or my kids for much but we do not mess around with Lyme. We get treated if we suspect Lyme for any reason. Doctors around here will write a prescription if you even mention Lyme.

 

Lyme rashes do not always look like a bulls-eye. I had one that looked like a spider bite and my son had circles with a clear center all over his body. I thought it was ring worm.

[Vera]

I feel your pain. We went camping in Connecticut about a week ago. Nobody found a tick. I've been sick all this week with various vague symptoms. I can't help but feel a bit paranoid.

Go get some antibiotics! The ticks that cause Lyme are so tiny that you probably won't ever see the one that gives you Lyme. I know many, many people who have had Lyme, including me, and none of them ever saw the tick.

[Vera]

In Connecticut you definitely can. If you tell them that you were camping in CT they shouldn't give you an argument. Insist! Unnecessary antibiotics won't hurt you just once. That's how I justify it to myself anyway.

[geodob]

The bulls eye rash doesn't occur in 20% to 30% cases of Lyme.

You have outlined a number of symptoms that are associated with Lyme.

Though it's important to take a preventative approach.  

As the way that Lyme bacteria works, is that it continues to produce a range of toxic substances in the bloodstream.

Which cause damage where ever blood flows to.

Where it causes damage to the nerve cells in the central nervous system and peripheral nervous system.

It can also cross the blood-brain barrier, and cause damage to the brain.

 

Though blood tests are only reliable in late stages, when enough anti-bodies have developed.

But by this time, a lot of damage will already be  done.

[Cera]

I don't want to cause additional worry but lyme is far from the only tick borne disease in the US.  I would definitely return to the doctor to look into her illness further (muscle pain is not a normal symptom of kid crud with the exception of the flu...and you would know if it was flu)

 

http://www.cdc.gov/ticks/diseases/

[Garga]

*sigh*

 

I find it so freaking frustrating that a person can't go outdoors and enjoy a bit of nature without worrying about all this stuff.

 

I doused my family in bug repellent and despite that my poor kids got eaten alive. Apparently I'm less tasty because I got maybe 2 mosquito bites in 4 days.

Tell me about it! My church is having an outdoor hot dog roast in the evening. Sometimes I go out in the day, but never at night or I get eaten by mosquitoes that give me huge welts.

 

If I tell people I'm not coming because, "I never go out at night," I'll be telling the truth but also sound a little looney.

 

But I don't go out at night. Ever. Just long enough to dash to the car. If not for the bugs, I would love being out at night.

[Carrie12345]

Antibiotics.

 

I do not like overusing abx, but my 11yo is on a precautionary 3 week round for a rash that the doctor and I both agreed was "questionable, but not definite."  It wasn't quite a bulls eye, and yet... it was kinda like a bulls eye.  She is normally a tick magnet, but we haven't found any on her yet this year.  Still, knowing the chances, we went with abx.  I did insist on amox instead of doxy as my own inner compromise.  Doxy should not be used on anyone under 8.

 

My 7yo was dx'ed (by blood) with Lyme last year, months after when we figure the unnoticed bite must have happened.  I won't go through that (or, rather, have my kids go through that) again if I don't have to.

[kitten18]

No, they didn't check urine, and she doesn't have a history of kidney infections. This kid is ridiculously healthy. She does get ear infections, which we probably miss most of as she never complains.

We rarely do antibiotics as she is allergic to several. I wonder how much that has to do with the substitute peds unwillingness to treat preventatively? Maybe the 'wait-it-out' is more of a 'wait until her doctor is back'?

I would take her in for a urine test. I've only had one bladder infection in my life and it turned into a kidney infection. I really didn't have any pain when urinating before it went to my kidneys.

My symptoms were fever and back pain.

[Kerileanne99]

I would request a urine test for her in case she is dealing with a UTI or kidney infection. Any chance she's a bit dehydrated and that's causing some of the leg cramps?.

I don't THINK so. She is always drinking, good output, and doesn't have any traditional signs. That being said, it is Texas summer here.

[Momof3littles]

I don't THINK so. She is always drinking, good output, and doesn't have any traditional signs. That being said, it is Texas summer here.

 

I was just thinking the fever could have her a bit dehydrated.

I mentioned upthread I'd be worried about Lyme, but you don't want to miss something else like a kidney infection, UTI, strep (can have GI stuff from strep and not have sore throat) etc. by assuming it is Lyme.  I would probably want a few things ruled out, although you could ask about starting treatment a while.

[Kerileanne99]

I was just thinking the fever could have her a bit dehydrated.

I mentioned upthread I'd be worried about Lyme, but you don't want to miss something else like a kidney infection, UTI, etc. by assuming it is Lyme. I would probably want a few things ruled out, although you could ask about starting treatment a while.

Definitely. And she did go to Zoo Camp all last week, and so was outside all mornings outside of my supervision.

Still. The kid is remarkably healthy-seeming for a fever this high an the other symptoms. But something is just NOT right.

 

This morning she slept in until 8:00, and just asked to lay in bed and read. This kid has woken up within 5 minutes either way of 6:45 am for the last 2 years. Hubby and I joke about our alarm clock. No biggie, she has a fever, so her little body probably needs extra rest. But this kid is so predictable. She goes to bed at pretty much exactly the same time and wakes up the same. And the second her eyes are open she is off and running!

 

None of the symptoms on their own really worry me at all. It is just all of them together are much more worrisome:(

[Butter]

I wouldn't jump right to Lyme Disease because there are other tick-borne illnesses it could be (and some are *worse* than Lyme).  I had a friend (in MD) almost die from Rocky Mountain Spotted Fever.  The doctors kept saying there was no reason to test/treat for that (she thought her symptoms fit) since MD is so far from the Rockies.  She kept getting worse and finally her husband threw a fit and they tested and that's exactly what she had.  By then, it was a long road to recovery.  Anyway, all that is to say, a course of antibiotics won't hurt and I'd take her elsewhere or throw a fit until she got treated/tested.  Those symptoms for that long are scary.  The ped brushing you off is not okay.

[Pawz4me]

I wouldn't jump right to Lyme Disease because there are other tick-borne illnesses it could be (and some are *worse* than Lyme).  I had a friend (in MD) almost die from Rocky Mountain Spotted Fever.  The doctors kept saying there was no reason to test/treat for that (she thought her symptoms fit) since MD is so far from the Rockies.  She kept getting worse and finally her husband threw a fit and they tested and that's exactly what she had.  By then, it was a long road to recovery.  Anyway, all that is to say, a course of antibiotics won't hurt and I'd take her elsewhere or throw a fit until she got treated/tested.  Those  symptoms for that long are scary.  The ped brushing you off is not okay.

 

That's downright scary.  Despite its name, a doctor should know that RMSP has little to nothing to do with the Rocky Mountain area.  The prime areas are Arkansas, Delaware, Missouri, North Carolina, Oklahoma, and Tennessee.  And Maryland has a relatively high occurrence of it.  Colorado and the other RM states are actually much less prone to it.  And it is a TBD that can kill in a relatively short period of time w/o proper treatment.

[Matryoshka]

I wouldn't jump right to Lyme Disease because there are other tick-borne illnesses it could be (and some are *worse* than Lyme).  I had a friend (in MD) almost die from Rocky Mountain Spotted Fever.  The doctors kept saying there was no reason to test/treat for that (she thought her symptoms fit) since MD is so far from the Rockies.  She kept getting worse and finally her husband threw a fit and they tested and that's exactly what she had.  By then, it was a long road to recovery.  Anyway, all that is to say, a course of antibiotics won't hurt and I'd take her elsewhere or throw a fit until she got treated/tested.  Those symptoms for that long are scary.  The ped brushing you off is not okay.

 

What an idiot doctor.  Rocky Mountain Spotted Fever is endemic in the southeast.  In fact, it's actually more common there than in the Rockies.  It would have taken him half a second of googling to figure this out. 

 

That's like saying Lyme disease doesn't exist outside of Lyme CT.  Yeesh.

 

[J-rap]

Regardless of whether it is Lyme or not, having a high-ish fever for 6 days is not normal.  I think either way, she should be on antibiotics.  I would go back to the doctor.  (And it could be a number of things -- including Lyme, but everything else I can think of would also be treatable with antibiotics!)

 

My daughter was just diagnosed with Lyme last week.  She didn't have the actual test, but the doctor felt her symptoms all pointed clearly to it (plus she is working in the mountains this summer).  The doctor didn't want to waste time and money on the test, so just started her immediately on antibiotics.

 

 

[Momof3littles]

I think the issue is not all antibiotics work on all of the various types of bacteria.  Meaning, specific types and strains do better with certain classes of antibiotics.  Even with tick borne illness, things like Lyme respond better to certain antibiotics, while other common coinfections sometimes require different antibotics.  So treating for Lyme with antibiotics doesn't necessarily mean it will help strep, UTI, etc. without a culture I think?

 

I would be concerned about tick borne illnesses but would not want to miss something like strep or UTI by assuming it is tick related.

[Spryte]

OP, keep us posted on your DD.

 

I'm glad to see so many people here are Lyme aware!  TBDs are nothing to mess around with, and some can kill or leave devastating consequences that will last, well, forever.  Wish I didn't know that quite so well.  

 

Whether it's Lyme or not, a fever like that for 6 days needs to be investigated further, and I hope you find answers soon.  

 

Sparkly, go to that walk in clinic! You want 30 days of antibiotics, to cover the entire life cycle of the spirochete.  10 days won't do it.  

[Kerileanne99]

For those of you whose kids have taken antibiotics for Lyme or other tick-borne diseases, is there a standard antibiotic prescribed? Dd is allergic to cephalosporins and penicillin. As I mentioned, I wonder if this is why the dr didn't antibiotics as a a precaution...

[J-rap]

I think the issue is not all antibiotics work on all of the various types of bacteria.  Meaning, specific types and strains do better with certain classes of antibiotics.  Even with tick borne illness, things like Lyme respond better to certain antibiotics, while other common coinfections sometimes require different antibotics.  So treating for Lyme with antibiotics doesn't necessarily mean it will help strep, UTI, etc. without a culture I think?

 

I would be concerned about tick borne illnesses but would not want to miss something like strep or UTI by assuming it is tick related.

 

True, you could always go into the clinic, be tested for a UTI and strep to rule those out.  Just make sure to have an antibiotic prescription in hand even if those tests turn out negative.

[Spryte]

For those of you whose kids have taken antibiotics for Lyme or other tick-borne diseases, is there a standard antibiotic prescribed? Dd is allergic to cephalosporins and penicillin. As I mentioned, I wonder if this is why the dr didn't antibiotics as a a precaution...

 

The standard for kids would be amoxicillin.  For adults it's doxycycline, but not in kids.  If your child is allergic, there are other options, so don't worry.  The main concern is that the dosage is high enough to be bacteriocidal rather than just bacteriostatic.  Meaning that a dose that is not quite high enough will stop the spirochetes from replicating, the patient will feel better, but later relapse.  You want a dose high enough to *kill* the spirochetes.  And you want to take it for the entire life cycle of the spirochete - go for 30 days - to prevent relapse as well.  

 

I took so many different antibiotics on the journey through Lyme, there are many, many options.  Allergy to penicillins and cephalosporins won't stop her from being adequately treated.

 

Please do get that babesiosis test, too.  Treatment for that is not just antibiotics.  It requires an antiparasitic, as babesia is a cousin of malaria.  It is a miserable, miserable illness, and can be very serious.  Night sweats and high fevers are a hallmark of it.

[Corraleno]

I mentioned at the time that we had been traveling extensively this summer, including camping in places like Yellowstone and Rocky Mountain State Park and asked about Lymes. Both hubby and myself removed ticks from ourselves, but never found one on dd. The dr. blew it off since Alex did not have a rash.

 

MANY people who get Lymes never have a rash — my son was one of them. We never saw a tick, either. It was almost 2 years before he was correctly diagnosed, and then it was only because his knee blew up to the size of a melon, and after umpteen other specialists & tests we eventually ended up at a pediatric rheumatologist who thought to test for Lyme. DS spent a year and a half on doxycycline, and we're still not sure whether he's rid of it.  :sad: 

 

If there's even a slight chance that this is a TBD, do not "wait and see." These things are nothing to mess around with, they can cause lifelong health problems.