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Our otherwise healthy son has been ticcing for almost 4 months...


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I'm also curious if our son has LD and will be getting him tested. I've only now recalled he had a funky bite (bullseye) after a camping weekend almost a year ago. A month later he began losing weight, having fatigue, and I noticed some of his joint/body movements were getting a little odd. I'm curious. It was that month he had the flu, cold (& possible ear infection) - which I was afraid was turning into a chest cold after 3 weeks and the doc put him on abx - Amoxi. It was about 2 weeks after that our son started severe head nods - looked more like bowing or rocking out and other tics ensued from there.

 

This is strong evidence that you may be dealing with LD. Since Lyme disease testing is not definitive I believe that the sequence of the bite with rash, flu like symptoms and the tics starting after that are much stronger evidence then lab results might be. Based on that alone I would go see a LLMD. Getting tested for it may give you more data but you may want to see what tests the LLMD suggests as far as testing is concerned.

Edited by aidan'smom
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It is good that you are posting. You have much going on right now.

 

If you've not done so already, you may want to copy this post onto the lyme board. They will have good advice for you. I would find a lyme doctor if I were you. If you start on antibiotics right now, it could have an effect on your lyme tests, as some antibiotics put lyme into "hiding" and make it harder to deterct.... so I would proceed with caution until you get to a lyme doctor or do an igenex test.

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I was thinking this very thing. I have an appt tomorrow morning for LD but just family doctor for now. I was hoping to explain the directions we're heading in and ask her to take a throat swab - as review the notes from last year when he was last prescribed abx.

 

My friend also happens to have an IGENIX test kit handy and said we could use it. We haven't scheduled an appointment for abx with the neurologist yet or asked him further about the protocol he has in mind - need to learn more and ask more questions. We're waiting for his office to call back this week.

 

We haven't seen our family doctor since she began referring us to specialists, I think I'm gonna have to catch her up to speed with the direction we're going for PANDAS. Does anyone have a standby list of points to walk someone through? I like breaking things down for others and making it plain, really simple - perhaps a contradictory :) but this is what I'll be putting together this afternoon and add a few articles as well for her reference.

 

Thank you everyone for your replies, we can do this together, thank you.....

 

Jennifer

Edited by peacebstill
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I don't know enough to address your LD concerns, but on the PANDAS front, I'd get a throat swab (even w/o typical strep symptoms) before doing abx. As far as what abx, it seems most of our PANDAS kiddos do best on either azithromycin or augmentin (extended release especially).

 

 

Thank you - and are all the courses the same? How does it start and end, what are we watching for - the tics to cease? Will it be for just 5 days or do you keep going until you reach a certain point? Some of the liquid suspension of abx contain asapartame - is it ok to crush the tablet which does not contain aspartame and mix it with yogurt? Equip me! :)

 

Thank you,

 

Jennifer

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As a first line of treatment, for either, starting antibiotics is great. With pandas, by the end of the month you may see improvement (although at some points for my girls we needed more than abx). You will want to note how he responds to the abx. If he responds very well, it may help to push you towards pandas. If you see a worsening (herxing) then I would lean more toward lyme.

 

 

Thank you for sharing about your family's experiences and showing me what it has looked like for you, and what you have been learning through it all.

 

I was curious, could there still be a herx effect though for PANDAS/abx too - tics getting a little worse before better? I'm learning a lot about LD and its processes and treatments - from abx to alternative protocols. There's a lot of dot connecting going on and I hope for it to be done well.

 

Hoping right along with you,

 

Jennifer

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I really don't think there would be a "herx" from pandas. For lots of pandas kids (mine included), the infection may be long gone, and what you are stuck with is the autoimmune process. I would take careful daily notes, but look at things on a weekly trend. It is possible that you could see worse days, coincidentally, after abx with pandas, but I doubt a herx. Healing with pandas is sawtoothed, so it will be two steps forward, one step back. Also, antibiotics could (sorry) do nothing for pandas, if it is the autoimmune process you are trying to arrest.

 

I do agree with the others, however, your story sounds like lyme. I think as a parent, sometimes, you just need to follow what is plainly in front of you, rather than get jumbled up in tons of doctors and labs.

 

Your son had a known tick bite, a bullseye rash (which indicates lyme), then flu like symptoms. He was not treated for this (I assume). Within that year he began ticcing. That is fairly straightforward. You won't do him any harm by pursuing the lyme route, and shelving pandas, for a few months. On the other hand, if lyme is the issue, pandas protocol will not serve him well.

 

It is very likely your doc will dismiss lyme. Much of the medical community has no interest in "chronic" lyme. I would work on scheduling an appt with a lyme doc nearest to you, the wait can be long :(

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My healthy son who does take meds for ADHD started ticking out of the blue for no reason. He has been on other meds since he was five so we knew it wasn't it. We just ignored the tics for almost a year (Yes I was stupid) until the ocd and horrible separation anxiety started. He did not test for strep but presented with the strep bumps in his throat mouth so thank goodness my PED was aggressive and didn't fight us. He did have some bumps on his arms and wondered about empentigo. I also wonder about Staph because I think he has been set off by that too. Who knows? It's just important to get the help you need and the treatment you think your son benefits from. I kick myself because I wonder if I had been more aggressive at the time could I have stopped all this in its tracks. He could have lyme but they never ran panels and we have already been on antibiotics for months. I do wonder would the lyme still show up. Thankfully he is okay right now, but I have fears and hope it never gets worse. I wish the medical community would stop denying about Lyme and PANDAS and start treating. So many people need help.

Edited by MaxParkersMom
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