sons legs kind of froze up and he didn't talk, mouth open, but not droopy; what?

I don't blame you for getting scared. I would too. I hope someone here has a suggestion for you and I hope the doctor will get to the bottom of it so you will know exactly what's going on. Keep us posted.

I wondered about that. That's good info. to have for others to learn from, so thank you for chiming in.

Correction I meant to type I was sick but not yet diagnosed with lyme during my pregnancy with him. Anyway he was around 4-5 yrs old when it happend, he's now 13. He has some cognitive issues that make school a little challenging and an extremely low threshold for frustration.

thanks for the replies everyone.

That scares me.
Our appt. with the doctor yesterday was just a Skype appt. to go over the test results. She did ask about symptoms, and along with everything else I mentioned what he experienced that morning and that I'd seen something like it a few other times.

At the appt. time I hadn't been back on healing well yet to see any replies, so I wasn't thinking seizure and when I mentioned it to her she didn't say she thought seizure, but, and I hate to say this, I'm not sure she's the llmd for us, b/c it doesn't seem like she's the best around.

Now, I'm sure as a doctor she knows of different seizures, but still she didn't mention that, and there are just a couple of other things that don't impress me. I don't want to bad talk her, b/c I appreciate what she's done so far for us, but I want to change doctors I think.
Anyway, that's kind of beside the point.

Regarding my son, any advice about these things, the maybe seizures? I wish to God our pediatrician was a llmd. We love the guy, and he's very sharp and only ten minutes away (verses the three hour drive to the llmd). But he's not lyme literate. When I originally asked to test for lyme in Nov. he said "we can if you want, but I don't think that's it. Lyme is very rare."
I decided then and there to find a llmd.
Should I call the llmd back maybe and say I wonder if he's had a seizure.
Another MAJOR hurdle in this whole situation for me is my husband. He hates anything in the medical world. He doesn't trust doctors, he thinks medicine (including antibiotics) are "poison" and he downplays any symptom my son has.
Yesterday morning my husband was in the room when the strange maybe seizure thing happened to my son and saw it, but later when I mentioned it at the Skype appt. he shook his head and said to me (with a scowl on his face) "it was nothing." So if the doctor says to get a test of some sort about it, it will be major fighting at our house for it to happen. I'll do what's best for my son always, I just hate the fights with my husband that come before it all. You can't imagine what it's taken to get him to agree to the antibiotics she prescribed yesterday. Anyway, sorry I'm just venting now and going on and on.

I pray for the day when lyme is recognized and treated by every doctor as it should be! although that's not our time I know.

Anyway, ,maybe I should bring up seizure? or is it just part of lyme and I keep watching it? I don't know. I so much wish we had a doctor in town who I liked a lot for this stuff.

Thanks all!

Stacestar, I strongly recommend that you contact your son's doctor to do an EEG (Electroencephalogram) and possibly and EMG (Electromyogram) to make sure that his CNS is working properly. At this point in his life his brain is still developing and you need to protect it at all costs. These tests may help you find out what is going on in his little brain.

As for your husband, I can understand him. I don't trust doctors either and am disappointed in the way that they have treated me while pursuing a resolve to my infection. That said, the infection is real and we have to work with the doctors and keep looking for one that will give you the best results. If your husband doesn't agree, that is his right. You must watch for your son's well being since he is too young to care for himself.

I have a 2yr old granddaughter and she can't sneeze because I am ready to take her to the ER. She is my adoration and I would die if she was going through what your son is going through.

oh, and I was thinking the pediatrician for the possible EEG, b/c bottom line is my husband does not like or trust much our llmd, and he would never make the three hour drive for this.

so, I was thinking of going through our ped. for the possible EEG, b/c husband likes him, and it would happen sooner.

Stacestar, your LLMD will not get in trouble. She is regarded as a specialist much like a cardiologist or neurologist is. The infection is above the knowledge of your pediatrician so if he is as good as you say he is, he will welcome the added support of having an LLMD complement the medical treatment.

A good doctor will not let their vanity, ego, or personal opinion get in the way of treating a child that is symptomatic of an infection.

Please do be sure to let us know what the Pediatrician has to say!

I hope he will be able to help your son in some way. I'm sorry you and your husband can't meet in the middle and use a mix of treatments. Do you know if there are any Lyme support groups in your area? That would be good for you since you'd have support and could ask questions. Maybe someone would know of a different doctor too.

traveler,

this gets long, sorry. maybe get comfortable and grab a cup of tea or something, if you feel like reading it ;)

regarding PANDAS
initially, back in early November (2013) I was wondering if it was a PANDAS infection. But, the more I saw in my son and the I read of symptoms of PANDAS and symptoms of lyme, the more I thought lyme.

If you've got a minute, I'll tell the story and you can throw in your opinion too. I'll start with specifics, but then get general so it doesn't turn into a book.

Late Sept. 2013 and in Oct.: the first thing I noticed, but didn't put it together that something might be wrong, was that my son had occasional strong separation anxiety that I hadn't seen before, and that all of the sudden he was more easily irritated or throwing a fit (which he had never thrown fits before).
now, the irritability/fits weren't off the charts or anything or even that often, but for him I could tell they different.

Sept. 29: I didn't think anything of it at the time, but my son said before preschool that morning "my foot hurts". I know it was that day, b/c I volunteered in the library at his school. He limped a little that morning, but then nothing later that day.

Oct. 30: the first thing my husband and I really noticed, and knew something was going on was- my son suddenly developed a blinking motor tic that evening. and this tic lasted until late November. Also, that same day, before the tic started, he was unusually fatigued and said he didn't feel good, that his tummy hurt. I look back at the trick or treat pictures (yes, our town trick or treats on the 30th, weird I know) anyway, I look back on the pictures and see dark circles under eyes.
about the tics, occasionally a small bit of unnatural blinking will happen still, but very minimal and nothing like what it was in the first month. Also, he had a sniffling motor tic that lasted a couple of weeks then (thank God) disappeared.

I immediately went online to see what the heck could cause this.

He also, within the week I was online, was telling me his "tummy hurts" a lot.

So, in what I read in that first week many articles and people were suggesting (not to me, b/c I wasn't asking then, but just reading things), but they mentioned repeatedly to look into three things (with motor tic)
1. tic disorder/tourettes
2. PANDAS/PANS
3. Lyme Disease

we made an appt. for Nov. 8th with pediatrician and he had heard of PANDAS and ran a strep test, it was negative. I brought up lyme and he said he'd test for lyme if I wanted to, but he doubted that was it, b/c it's "very rare". (He didn't want to test that I could tell.)

So I went home and researched online more.

Now, here's where I can shorten this. What happened next is that by the middle to late November I asked myself "why is my son telling me, almost everyday, someplace on his body "hurts"?"

and it wasn't just tummy, and head. I was hearing everyday for a few weeks (and I still do) these things: (*= more often than others)
my foot hurts*
my arm hurts
my neck hurts
my head hurts
I have a headache
my leg hurts
my tummy hurts*
my big toe hurts*
my elbows hurt the most
my shoulder hurts
my knee hurts
son:"I don't feel good" me:"where?" son:"I don't know." or "everywhere"*
my legs are tired*
my legs are lazy and tired today
my fingers hurt
I'm tired*
I want to lay down
my hands tickle (A.M.)
I itch all over*
etc.

and sometimes he do a drop fall thing, within his control, but he'd drop himself down.

and I realized he was always having dark circles under his eyes.

So, I realized this was more than a tic/disorder.
And, as I read PANDAS it seemed that there was a lot of OCD stuff listed there that I didn't see in my son.
And it seemed like the symptoms matched lyme more

migrating joint and muscle pain
sporadic fatigue
stomach pain
headaches
motor tics
increased irritability
general feeling of malaise
foot pain
sudden occasional incontinence (that started in Dec.)
heart palpitation (Jan.)
and a few others that I'll save time and not keep listing.


and, it all comes and goes throughout the day, nothing is constant.
Also, it cycles. Since Nov. 19th I've kept a journal of his complaints to me. And I see there may be a week or two or more where I don't hear about joint pain, and then-bam, it's back.
same with other symptoms, except…the sporadic fatigue and dark circles, those although not constant, don't seem to cycle.


I guess I did write a book here. I'm sorry, to be so long with this.

Lastly, his Igenex test came back negative, BUT with these things:
IgG
39 kDa IND
41 kDa ++

IgM
41 kDa IND

I understand that 41 can be for other spirochete bacteria as well (maybe even parasites?), but from what I've heard 39 is specific to lyme, and that an IND is a weak positive.

Maybe that's really all I need to mention, and I've gone on and on.
But, anyway, if you did get this far in my long, long, long post, thanks for reading and for any info.
I'm always looking for any ideas and info!

thanks for reading through it Traveler. I appreciate hearing from people who have experience and know a lot more than I do.

As far as detox, we aren't doing anything now, but after these posts and replies with ideas and advice, I'm feeling convicted to do it.

I guess it's not really a detox, but one place I'm going to start is we're going to go gluten and dairy free and watch for no MSG and no artificial colors and preservatives, starting today. We don't eat horribly at our house, but pasta gets into the menu a lot, and cheese, and some crackers and a little sugar now and then. I know not enough veggies either.
Im sure these changes could help some.

But when say detox, do you have a particular one in mind that you could recommend I look into?
and the ammonia connection and how to detox it; I'm open to ideas, and I'll look into tonight on my longer computer time.

Thanks so much!

thanks traveler,
I'll look into those things (neuro antitox and hansa).

and I have epsom salt in my linen closet so I'll try that one for sure.

good information!