Jump to content
ACN Latitudes Forums
  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

airial95

Questions - What to look for?

Recommended Posts

Hi, I'm normally on the PANDAS board, as my son is 3 1/2 and was dx last year. But right now, it's my daughter that I'm wondering about. A quick background:

 

My almost 5 year old daughter (surprisingly) has always been our sicker kid, not my PANDAS son. Tons of ear infections (eventually tubes) and she seems to get all sorts of skin rashes (impetigo, 5ths disease, roseola, etc...) Normally though, she bounces back quickly and has tons of energy and is very outgoing. She's always been a bit of a drama queen, and has even "faked" being sick a couple of times just to get a day home with mom/dad/abuelo.

 

Her issues started a little over a month ago, during the holidays. We noticed that she was getting tired very easily, and didn't seem to have as much endless energy as usual. We wrote this off as being the holidays, and with sleep schedules being off, terrible diet (from all the sugary fun that is the holidays!), overall excitement etc... On X-mas day, within minutes of opening her gifts she was passed out on the couch (we called it her X-mas coma and assumed the excitement was too much). Unfortunately, we now know that it was just the beginning of things.

 

For the last several weeks her fatigue has gotten worse, she's taking 3-4 hour naps on the weekend (totally unusual for her), and still going to bed at her normal bedtime (sometimes earlier). In fact, we haven't had to "fight" her to go to bed in over a month (not needing another story, another drink of water...you know the drill). This has been her only consistent symptom. She's had no fever or any other sign of anything going on. A few times she complained of a headache, but nothing consistent.

 

We finally took her to our pediatrician last week, and since this has been going on for a while, he ordered a battery of blood work - ruled out the usual suspects (low iron, mono, leukemia, kidney/liver issues). While we were waiting for the blood results, my daughter casually told us that she didn't like to play soccer anymore b/c she gets dizzy when she plays (she also said this happens at the playground at school - which the teachers confirmed she plays for only a short time now and then will go and sit down). She also told us that her tummy hurts when she goes potty.

 

At the Dr. yesterday going over the blood work, we told him of the new issues, and he did a urine sample and tympanagram. Her tympanagram was totally flat, which means there is fluid build up and pressure in her middle/inner ear (even though there is no sign of an ear infection at all), and her urine came back with very high white blood cells - so they're sending that out for a culture too (that will be back Friday). Again, she's had no fever or any other outward sign of infection - other than the terrible fatigue.

 

She was socked again this morning, and walking down the stairs, for the first time she told me her legs hurt - specifically her knees. She's never mentioned this before.

 

So here are her breakdown of symptoms:

Fatigue

Headaches (occasionally)

Dizziness during activity

Stomach pain (occasionally)

Possible joint pain (only one complaint thus far)

History of rashes

 

I'm wondering to how these correlate to typical Lyme presentation? I'm thinking about aksing our Dr. about this when we get her urine results on Friday, but I'm not sure if I'm reaching or reading into things based on the little information I've gathered about Lyme from the PANDAS boards.

 

Any thoughts, input, or questions I should ask our Dr. would be appreciated.

Share this post


Link to post
Share on other sites

Well, yes I think this screams lyme, especially with some other things you have shared with me before. And with your son being pandas...

 

She sounds very fragile right now. It seems the earlier you get testing and/or treatment, maybe the better she will respond (also, please consider not doing any shots right now!). BTW, did she get the flumist or any shots shortly before all this started? My personal opinion is that vaccines are very bad for any child with a chronic infection...

 

I have a bad feeling that your reg ped will blow this off, but you are probably prepared for that already. I know he has been supportive of pandas, but it is a far cry from congenital lyme, ya know? Please let us know what happens!

Share this post


Link to post
Share on other sites

My goodness, so sorry something is going on here with your daughter here.

 

Gosh, every lyme presentation is different, but you have a number of things here when put together, point toward the need to evaluate lyme as a possibility. Everything you have put in the list can be lyme symptoms, some of them like fatigue and joint pain hallmarks. If the joint pain moves (next week it's the foot or the other knee, or whatever), lyme would be the only known thing to explain that, but even if it doesn't move, that combination of symptoms in such a young otherwise apparently healthy person (if that's been the case) is just demanding of a significant explanation. Gosh, particularly the fatigue, I would think--never had kids, but goodness, they're always so energetic from what I've seen. I remember one doc I had long ago telling me to deal with the fatigue as I was getting older--can't use that line here!

 

The "x-mas coma" is certainly alarming, but not sure what you're really describing. Was she just deeply asleep? Perhaps just from a sugar low? Could it have been a seizure (don't know much about them, other than important to take them seriously)?

 

I think any kind of autoimmunity in the family is another "risk factor" (feels like not quite the right word) in terms of correlation, as lyme can cause autoimmunity in the body and certainly benefits and feeds off of it.

 

The babesia coinfection can come on very sudden, and I think is often the cause of dizziness in those with lyme. But I thought fevers/chills were common with that, don't know if it always happens. I know sometimes there are nighttime sweats.

 

You might consider taking her temperature several times throughout the day for a few days and record that and look for a pattern. Borrelia (the one sometimes called lyme) is said to cause a peak in temperature in mid-afternoon, but it is not always too high then, it's more the pattern. For me, for example, it will get up to 98.5 at the mid-afternoon peak, and then go down to 96 for bedtime and early morning. I have heard a bartonella-dominated lyme would have a different pattern (have it written down somewhere, don't remember), and heard nothing about babesia patterns. But, I'm just thinking, maybe that's something easy you can do, if it is easy, to get maybe another clue.

 

Off the topic of lyme and PANDAS and all that, I've always wondered how many kids just faked illness to stay home from school, if that was common. I can remember doing that a good bit, say you have a sore throat or stomach ache or whatever, and get the day off. In retrospect, perhaps I was a bit worn down or tired and that was part of what prompted the desire. Of course the attention was nicer than what was available at school and perhaps played a role as well.

Share this post


Link to post
Share on other sites

Just in the category of "what to look for", I want to toss out these other things that sometimes come with babesia:

- air hunger / sighing

- shortness of breath

- irregular heartbeat

- low iron

- pain in bottom of feet any time of day (just early morning is more like bartonella)

- drunk/drugged feeling

Share this post


Link to post
Share on other sites

Just one visit to a good lyme doctor should answer your questions. Better to have your daughter checked right away than wait if there is a possibility for lyme.

 

My DS presented with flu-like symptoms, including fatigue, stomach-ache, muscle aches, headaches. It took me a little while to get him in to see a LLMD and am glad we did it! You could set up an appt. now because they take a while to get in to see and go from there. Any child that has fatigue for a length of time probably has something going on.

 

Best wishes.

Share this post


Link to post
Share on other sites

Thanks for the input. I emailed our doctor this morning telling him the latest, and he usually gets back to me within a day or so. I didn't mention Lyme specifically, I just mentioned the complaint of her knees/legs hurting - to see what he says.

 

I have to admit, and I know the parents on the PANDAS board are sick of me saying this, but I absolutely LOVE our pediatrician. He's very open minded and progressive - and thorough. His practice is a teaching practice for local nursing and PA students, so he's always up on the latest research, news, etc... Heck, he likes it when I come in with new PANDAS info/papers. It's quite the breath of fresh air from the experiences of others.

 

Even if he doesn't suggest Lyme based on my email, if I ask him to test her, he likely won't fight me on that - even if he doesn't think that's what it is.

 

Thanks again for all of your thoughts!! I just dread the thought of going down the path of ANOTHER sick kid!!!

Share this post


Link to post
Share on other sites

Thanks for the input. I emailed our doctor this morning telling him the latest, and he usually gets back to me within a day or so. I didn't mention Lyme specifically, I just mentioned the complaint of her knees/legs hurting - to see what he says.

 

I have to admit, and I know the parents on the PANDAS board are sick of me saying this, but I absolutely LOVE our pediatrician. He's very open minded and progressive - and thorough. His practice is a teaching practice for local nursing and PA students, so he's always up on the latest research, news, etc... Heck, he likes it when I come in with new PANDAS info/papers. It's quite the breath of fresh air from the experiences of others.

 

Even if he doesn't suggest Lyme based on my email, if I ask him to test her, he likely won't fight me on that - even if he doesn't think that's what it is.

 

Thanks again for all of your thoughts!! I just dread the thought of going down the path of ANOTHER sick kid!!!

I agree with others that this sure sounds like lyme and or babesia. Air hunger, night sweats, thigh cramps, sore ribs and headaches can be babesia. Of course you can get headaches with either one. I had babesia and the fatigue was crushing. I had to take several small naps a day to get through the day when I was at my sickest but I sure would have slept longer like your daughter if I didn't have three kids to take care of. My antenna would go up with your other child, the one with PANDAS, because if your daughter has a tick borne illness there is a good chance that it may be a factor in your son's illness too. It seems to be a factor in a very large number of PANDAS cases. TBD's seem to affect whole families and it presents very differently from person to person. I would get to a llmd asap b/c the dizziness could be a sign of neurological lyme. My son had Bells Palsy and this might not have progressed to Bells Palsy if I or his former pediatrician had understood that his early symptoms of headaches and sensitivity to noise were red flags of LD.

Share this post


Link to post
Share on other sites
.

 

Even if he doesn't suggest Lyme based on my email, if I ask him to test her, he likely won't fight me on that - even if he doesn't think that's what it is.

 

 

so good to hear you have an open-minded ped!! for Lyme, i'd ask him to specifically run a western blot so you can see the bands, rather than a simple ELISA screening test. my ped also ran a babesia, bartonella and ehrlichia titers test on my older son simply b/c i asked him to b/c i said I took him to our integrative MD who is treating other son and he believes him to have those as well.

 

from what i've heard, Labcorp is better than Quest. maybe not as sensitive as somewhere like Igenex but it's a place to start.

 

so nice to have someone one your side rather than having to fight for it, isn't it!

Share this post


Link to post
Share on other sites

The pediatrician did email us back, and said that the joint pain could likely be realted to the inflamation associated with what ever viral/infection she has. He wants to see what the round of tests come back with on Friday, to see if it gives us any more clues.

 

He also said that if it persists, we need to address it more fully b/c it could point to something far more serious - but at this point, since she's only mentioned it once, to keep an eye on things and look for her showing signs of discomfort and complaints.

 

This is a tough one for us. My daughter is a bit of a drama queen, and she sees all the attention her brother gets from being sick (PANDAS). We're nervous about coming right out and asking her every day if her knees hurt again because I know the answer would always be "yes" - even if it's not true - because she likes the attention she gets from it. (It sounds terrible, but she's been known to be a "faker" before.)

 

I think I'll see what the tests come back tomorrow with and go from there...

Share this post


Link to post
Share on other sites

I was wondering if anyone knows how a child may react if they have Lymes (and don't know it yet) and they take a month of a steroid taper. Do you know what symptoms you may see?

TIA.

Colleen

Share this post


Link to post
Share on other sites

In our case, the steroid burst helped our older son but it was not long lasting and symptoms returned. When I was administered steroid while pregnant and didn't realize I had Lyme.... seizures started. So the response can vary.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...