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PANDAS + now Bartonella


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Hi Karen,

 

I'm sorry that don't have any advice to offer :(

I have two PANDAS kids (possibly three..my youngest is looking PANDAS like), and we are just starting down the Lyme road with my oldest.

 

I was actually just going to post something similar, so I look forward to what everyone has to say.

 

I just wanted to say how awesome and pro-active your doctor (and you as a mom) were to even check for Lyme. My ped is great with PANDAS, but not really wanting to even check for Lyme involvment.

 

I know it will be a long/rough road for all of us, but at least you now know what your are dealing with.

Hugs~

Edited by ziva
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I have to say that I never really considered that this would be an issue for us - - and am perplexed - - but I also have many questions. I'm researching - - but after the last, well, almost 2 years - - I'm just so weary. So - if anybody in the know has any words/suggestions/information to offer - - I'd be more than grateful! What can we expect? How long will this last? Will it really go away? I literally don't think I can prepare myself for the potential herxing that I have read about..... help!!!!

Thanks,

Karen

 

You know how Dr K once had a description of the Pandas mom - Type A, good in math...sort of pushy and anal-retentive (he found a way to say that nicely)...well..I have a description of the Pandas/lyme mom and one of the key criteria is that you have a melt down/nervous breakdown at the time of diagnosis. By the time most of us have gotten to this forum, we're exhausted, broke and jaded. So a few good cries are a good starting point.

 

I can't say I'm happy to be here, but there are a few "good" things about tick-borne dxs. First, you get to stop being paranoid about strep. You can let your kids go to jump zone and touch public door knobs and not banish the best friend who has a scratchy throat. Second, you can tell people your kids have "lyme" and you get nods of understanding (they don't really understand but it's not that queer look that you've gone crazy that you get when you say the word Pandas). Third, there are more LLMDs than there are Pandas doctors and you might not have to stay in a hotel every time you have an appt. with one.

 

The bad news of course is that it's just as controversial, just as misunderstood and the doctors don't take insurance, so it can be just as if not more expensive.

 

No one can tell you how long it may take to get your kids well. Some treat and see quick results. Some take longer. Some get better and better. Some plateau and need to look at additional causes (vitamin/mineral deficiencies known as KPU or pyroleuria), mold exposure, heavy metal toxicity, additional infections.... So no easy answer for what you may or may not face. But, I can say that despite the setbacks we've had since starting lyme treatment last fall (and pursuing Pandas treatments for 2 years prior to that), my kids are better. Not cured, not on a fast track, but certainly much better. I know there will be tough times ahead and I dread them. But at the end of each rough spot, there is goodness.

 

As for herxes, they're as unique as the individual. We had a few mild ones and a few serious ones. You deal. You learn. You move forward. There are things you can do to lessen the severity and prepare your body. You can back off of treatment if things get too bad. Try not to freak over the prospect. It's like child birth. It might be a necessary process, but it doesn't have to be horribly painful and even if it is, it's rarely so painful that you stop having kids after your first. You deal. Then you feel better.

 

One final thought - when this forum started last year, there were only a few people. Over the past 6-8 months, more people have joined and the group's knowledge has expanded. So there's less you have to discover the hard way and perhaps your journey will be a little shorter. So have a good cry but know it gets better once you wrap your head around it.

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I have to say that I never really considered that this would be an issue for us - - and am perplexed - - but I also have many questions. I'm researching - - but after the last, well, almost 2 years - - I'm just so weary. So - if anybody in the know has any words/suggestions/information to offer - - I'd be more than grateful! What can we expect? How long will this last? Will it really go away? I literally don't think I can prepare myself for the potential herxing that I have read about..... help!!!!

Thanks,

Karen

 

You know how Dr K once had a description of the Pandas mom - Type A, good in math...sort of pushy and anal-retentive (he found a way to say that nicely)...well..I have a description of the Pandas/lyme mom and one of the key criteria is that you have a melt down/nervous breakdown at the time of diagnosis. By the time most of us have gotten to this forum, we're exhausted, broke and jaded. So a few good cries are a good starting point.

 

I can't say I'm happy to be here, but there are a few "good" things about tick-borne dxs. First, you get to stop being paranoid about strep. You can let your kids go to jump zone and touch public door knobs and not banish the best friend who has a scratchy throat. Second, you can tell people your kids have "lyme" and you get nods of understanding (they don't really understand but it's not that queer look that you've gone crazy that you get when you say the word Pandas). Third, there are more LLMDs than there are Pandas doctors and you might not have to stay in a hotel every time you have an appt. with one.

 

The bad news of course is that it's just as controversial, just as misunderstood and the doctors don't take insurance, so it can be just as if not more expensive.

 

No one can tell you how long it may take to get your kids well. Some treat and see quick results. Some take longer. Some get better and better. Some plateau and need to look at additional causes (vitamin/mineral deficiencies known as KPU or pyroleuria), mold exposure, heavy metal toxicity, additional infections.... So no easy answer for what you may or may not face. But, I can say that despite the setbacks we've had since starting lyme treatment last fall (and pursuing Pandas treatments for 2 years prior to that), my kids are better. Not cured, not on a fast track, but certainly much better. I know there will be tough times ahead and I dread them. But at the end of each rough spot, there is goodness.

 

As for herxes, they're as unique as the individual. We had a few mild ones and a few serious ones. You deal. You learn. You move forward. There are things you can do to lessen the severity and prepare your body. You can back off of treatment if things get too bad. Try not to freak over the prospect. It's like child birth. It might be a necessary process, but it doesn't have to be horribly painful and even if it is, it's rarely so painful that you stop having kids after your first. You deal. Then you feel better.

 

One final thought - when this forum started last year, there were only a few people. Over the past 6-8 months, more people have joined and the group's knowledge has expanded. So there's less you have to discover the hard way and perhaps your journey will be a little shorter. So have a good cry but know it gets better once you wrap your head around it.

 

Thanks for this-I really needed it tonight. One question though-how long does it take to "wrap your head around it"???

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I sympathize with your wearisome perspective and the need to cry. I know I cried last year this time in front of the Dr. when I was diagnosed with Lyme and the realization all three of our children had congenital Lyme and not just one PANDAS child. When we entered into Lyme treatment we had also had a year previous of PANDAS treatment that were very helpful for our older DS. It had been a long journey, I felt like I had run a marathon for him and then was expected to run another marathon in succession. I'm still here... over two years later working on it all for our family now.

 

BUT, I wanted to concur with LLM's sentiments and using many of her words:

 

"Despite the setbacks we've had since starting lyme treatment last August my kids are better. Not cured, not on a fast track, but certainly much better..... "

 

I am much more hopeful.

 

-Wendy

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One question though-how long does it take to "wrap your head around it"???

 

Why, it takes no time at all. It's just that finding the mind you've already lost takes some time. But once you find that, wrapping the rest of the head around it is pretty easy. :D

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Karen,

I was overwhelmed when I fianlly figured out my dd also had Lyme/Bart in addition to PANDAS. I had spent the previous year and a half learning all I could about PANDAS and finding the right doctors and making difficult decisions.(antibiotics, prednisone, ivig, etc) I just didn't want to learn anything else! and there is a lot to learn with Lyme and Bart. It's another field that is controversial and navigating treatment options can be challenging.

 

That said, I do feel like we are finally on the right path. I feel like I have two great doctors who both want my child to be back to 100% as much as I do. I feel like they both have the experience and knowledge to keep her moving forward and I feel like they are both open minded enough that if something is not working, they will change tactics and figure out something else.

 

I haven't posted much for updates on my dd because I still don't know how this will all end, but I'm finally feeling more hopeful again.

 

My dd started Lyme/Bart treatment at the beginning of February. Unfortunately for her, the initial bout of herxing after the first month of improvement, lasted till week 16. (she just had her third ivig since starting lyme treatment but it was her 7th overall) Her improvement followed two weeks after her second ivig after starting lyme treatment. We do a lot of stuff for detox in addition to the lyme/bart treatment.

 

The first thing to resolve happened in the first month and that was that her constant sinus drainage stopped. She had struggled with this since the PANDAS diagnosis and even with allergy meds, 2 sinus rinses per day, and daily Musinex, she had constant drainage down her throat. That has not returned since one month into treatment. She still takes allergy meds, (haven't wanted to make that change yet) but doesn't need Musinex or sinus rinses.

 

Weeks 4-16 were very difficult wrt OCD. (her worst symptom) It was definitely taking a step backward for her, though she had been going backwards for several weeks before starting Lyme treatment anyway. She had periods of motor tics again in the first few weeks of treatment too. (not a big deal to us compared to the OCD)

 

In the last 9 weeks, she improved moderately. She's still WAY better than she was when we started this journey, but never as good as she was after 2nd IVIG when we thought she had only PANDAS. Our doctors have told us that with Lyme/bart/pandas, its more of a slow steady recovery, rather than an overnight change.

 

She is quite functional and moderately happy most of the day. Difficulties arise in the last few hours before sleep and she is T-I-R-E-D of struggling with OCD. In this last 6-7 weeks, she has been able shower and dress daily independently for the first time in almost 2 years.

 

Sometimes I'm as frustrated as ever and can't see the forest for the trees, but when I can take a step back and take my emotions out of her daily struggles, I can see that she has made solid gains since starting lyme treatment after stalling out treating only for PANDAS. It was not without a very difficult start and it is not without bumps in the road, but it is definitely forward progress.

 

Hang in there. You will get there too.

 

(knocking on wood, in the hopes of not jinxing us)

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One question though-how long does it take to "wrap your head around it"???

 

Why, it takes no time at all. It's just that finding the mind you've already lost takes some time. But once you find that, wrapping the rest of the head around it is pretty easy. :D

 

:lol::lol::lol::lol::lol:

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