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I've been reading here for months, and thank you all for the incredible information you are sharing. We're a bit lost right now, and I'm worried we haven't been treating our son as aggressively/correctly as your children, but I'm not sure. I know this is long, but thought the whole history was important to understand our situation. ANY advice you could share would be appreciated more than I can convey.

 

Thank you!

 

Son 11, starting Middle School few weeks, dealing with tic/OCD problems for 2 years. He’s an otherwise healthy, smart, outgoing kid.

 

Summer 2008 moved from VA to TX, stressful, some mood/anger issues over summer.

 

Fall 2008: Neck jerking out of nowhere - age 10.

 

Winter 2008: Pediatrician swab test negative for strep, so never considered PANDAS. Worried dealing with TS.

 

Winter 2008-Fall 2009: Tics changed from neck jerking, throat clearing cough, eye rolling, and back again. During this time had a chicken pox vaccine, braces. Swine flu scares, son never (showed signs of being) sick. Told son would outgrow the tics.

 

By Fall 2009, eye rolling and neck jerking escalating, depressed, finally admitted anxiety over unwanted and scary thoughts/images, like the devil was going to get him, worried going to ######, always apologizing to God, 2012, getting swine flu/diabetes, etc. Worried fat, not muscular (he’s very athletic, bit small/light for his age).

 

Nov 2009: Found Neuro-Sensory specialists who specialize in role of immune/neurotransmitter disorders and relationship to CNS disorders/autism/processing disorders. They felt son had underlying methylation disorder the predisposes his immune system to have problems ridding body of viruses/bacteria. Believe IS not strong enough to kill viruses (T cell imbalance) so B cells overcompensate and result in inflammation of CNS and mixed signals leading to tics. (As baby had allergies, ear tubes, slow to talk, some slight processing issues, normal kid strep sicknesses, then rarely missing a day of school in elementary school - belief because his T cells weren’t able to do their job, so he was sick, yet never showed signs of it, but the continued taxing of his IS/inflammation of his nerves would increase). Believe that if fix immune system, body can rid itself of viruses and heal its nerves. Went on immunity building supplements (B12/FA/P5P, micellized D3, omegas, zinc, magnesium, etc.) as well as antivirals (amantadine 100mg and acyclovir 200mg daily plus hydrocort 10mg as needed. He also did a 5 day Zpack of antibiotics. Blood tests: ASO titer 413, DNASE B Antibody 273, homocystein & D levels low, leading them to believe dopamine was low and that played role in tics emerging. .

 

Nov 2009-April 2010: We had our son back. Tics stopped 90%, his depression/anxiety left, he dramatically improved in sports and school, no spring allergies, and was very happy and confident. The belief was his IS was strengthened, able to decrease viral overload, resulting in less inflammation of CNS. So...I guess PITANDS? In Spring had teeth extracted and braces put back on, some jaw grinding tics but nothing that was interfering with his life.

 

April 2010: Stopped antivirals, zinc, magnesium for a week, and saw some regression so put back on. Near end of month, scary regression. Tics came back (not fully) but disturbing images came back hard (mostly scrupulosity/blasphemous thoughts). Very depressed and scared. With this presentation doctors felt it was PANDAS, and started him on antibiotics: zithromycin 250mg every other day and diflucan 100mg twice a week, and probiotics twice a week. Blood tests: ASO 389, DNASE B Antibody 191. Within a week we had our son back.

 

April 2010 to June 2010: All scary stuff went away, but only thing to not go away was anxiety over body image, but we hoped it was waning. Beginning with a high stress time in June, had increasingly irrational worry he was too small yet terrified of getting fat. Could barely get him to eat 1000 calories, and he was obsessed/depressed and worrying non stop. Needed constant reassurance that what he is eating is ok, always asking if he is too skinny/too fat.

 

July: Doctors rx’d oxytocin, not to treat source but the symptom of anxiety. Worked great, he was eating again (although vigilant) and happy gain. Happiest we’ve seen him. Felt we had turned the corner. End of July marked end of antibiotics (11.5 weeks) and we discontinued. With slow regression, after 2 weeks off he was miserable again. He said he thought the tics and bad thoughts were coming back, and obsessive worry about his size got worse.

 

August: Put him back on antibiotics and scary thoughts gone, he’s eating, but still vigilant and concerned, and he’s starting to lose the depression although still very hard on himself. Doctors want to try amoxicillin (3 times a day, don’t know the strength as have to go pick up at pharmacy). Said the zithro inhibits strep from growing and then the IS kills it, but amoxicillin is bactericidal. We are afraid to take him off antibiotics and antivirals.

 

My questions for you all:

 

Were we way off base to approach his treatment this way?

 

Were his antibiotic doses way too low/wrong?

 

Does he have it bad, or mild? We usually thought mild compared to stories I’ve read, and honestly, no one but our family would guess what's been going on with the exception of the tics in Fall 2008 that were so noticeable, but when that depressed and phsycotic thoughts, it felt very bad).

 

He’ll be 12 in November, can we ride out til puberty?

 

Have reached end of what these doctors can do?

 

Lyme testing? IVIG?

 

How manage school, what prophylactic meds?

 

What now???

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Were his antibiotic doses way too low/wrong?

How much does your son weigh? I would think an 11 year old should be on at least 250mg/day azith, possibly 500mg/day. The other antibiotic that people on this forum have lots of success with is Augmentin XR (1000mg 2x daily for most kids, depending on size).

 

I would stay away from Amoxicillin....Azithromycin (at high enough doses) or Augmentin (esp XR) are much more clinically effective.

 

[

He’ll be 12 in November, can we ride out til puberty?
It doesn't always go away with puberty. And, my understanding is that untreated PANDAS has a larger chance of persisting into adulthood.

 

 

Lyme testing? IVIG?

You might also consider getting a CaM kinase ll test through the Univ. of Oklahoma.

 

You would want to do CaM testing b-4 any steroids or IVIG.

 

Here is a PANDAS flowchart. http://www.latitudes.org/forums/index.php?showtopic=6688

 

Frankly, the I find the anorexia to be very concerning and that would push me to treat PANDAS even more aggressively. (My dd also had PANDAS anorexia...she's 10 years old now, was hospitalized with Anorexia Nervosa at age 7. She's been on 250mg/day Azith. for over 2 years and also 2 IVIG's).

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Were we way off base to approach his treatment this way?

In my opinion, no, not at all. In fact, you seem WAY ahead of the game, compared to many. You've been proactive and found professionals to assist you. The treatment protocols are still under development, without full agreement by any of the specialists in the field, even, and even if the protocol was fully understood and set, it seems likely each kid would/could still respond in an individual way.

Were his antibiotic doses way too low/wrong?

Not necessarily; didn't you indicate that he would improve on those dosages? And that when you took him off and he decompensated, you'd get him back on again? Then, at least on some level, you were meeting the needs he had at the time. What my family is discovering is that there's something different that kicks in around puberty, and it seems possible that the treatment needs shift some at that point. With a new, current round of testing for strep, lyme, myco p., etc., you might be better able to identify more specifically what infectious agent you're dealing with, and then find the dosage/med that's best suited. If you've lurked here for a while, you'll see that our kids tend to respond differently to different meds, but when it's strep related, the two most prominent and helpful seem to be azith and augmentin, particularly the XR (time-release) variety.

Does he have it bad, or mild? We usually thought mild compared to stories I’ve read, and honestly, no one but our family would guess what's been going on with the exception of the tics in Fall 2008 that were so noticeable, but when that depressed and phsycotic thoughts, it felt very bad).

I think every parent asks him/herself that at one point in time or another. When my DS13's last exacerbation hit last spring, I thought he had it REALLY bad; then I read "Saving Sammy," and I thought, well, maybe he's not SO bad compared to some. Now, at times, I find myself a bit envious of others who've come to better places than we have in terms of behavior, remission, etc. It changes almost daily . . . such is the resilience of the human desire to be happy!

He’ll be 12 in November, can we ride out til puberty?

That's the $100 million dollar question! My DS is 13-1/2, and we've been "riding it out," with the help of antibiotics, therapy, supplements and low-dose SSRI's for about a year now. It has it's good days and it's worse ones, but we celebrate every gain, however small. The thing is, it's a balancing act and a personal choice about what "riding it out" costs the kid and the family, eh? Because our DS is generally in good spirits, can have fun, can think, can laugh and joke, despite some tough-to-eradicate OCD behaviors, we tend to think that, yes, we can ride this out . . . so long as he doesn't start to slip away again. But if we should arrive at the point again where he can't attend school, feels as though his life is not worth living, shrinks inside himself, feels like an utter failure academically, etc., then riding it out any further won't be an option. We'll have to get more aggressive with this PANDAS animal! :angry:

Have reached end of what these doctors can do?

Not necessarily, especially if they're receptive to your contributing research, ideas, etc. But you may want to start bringing one of the more seasoned PANDAS specialists into the mix. It does seem as though your medical team has done a good job assisting you up to this point, without being dismissive or negative. But it probably wouldn't hurt to see one of the docs for whom this is their primary focus (listed here on one of the pinned threads at the top of the forum.

Lyme testing? IVIG?

Lyme testing, definitely! It seems more and more folks are discovering lyme lurking in the background of their conditions these days, so ruling it out seems well worth the effort. IVIG? That's another personal decision largely predicated, I think, on how your child is impacted by the condition and how well he responds to the other available treatments, like antibiotics.

How manage school, what prophylactic meds?

My DS13 has an IEP at school that affords him accommodations and support, both inside school and outside (when it comes to homework, absences, etc.) From our experience and reading here over the last year or so, I would say that prophylactic meds for school-age kids is almost required; schools are petri dishes! Again, med choices and dosages vary, but once you're clear on what infection you're dealing with and what abx your child best responds to, the prophylactic med should make itself more clear, I would think.

What now???

Grab on tight for quite a ride! ;) In all seriousness, it sounds as though you've already got a familiarity with the situation, and its now a matter of adapting to your son's level developmentally, age-wise, cycle of exacerbation, etc. At least now you know where you can come for lots of empathetic company!

 

Welcome to the forum, and hang in there!

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Hi Braveheart,

I think we may be seeing same docs. Please see my post earlier today under "questions for doctor." We had our second appointment yesterday and are treating much more aggressively. Your post heartens me that some of the things we are trying might help! My son has been ill for 6 years and I'd love to "get him back." Please keep us posted on what works well and what does not for your son!

CJ

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Thank you for responding and all the insight you've offered.

 

CJ: Yes! We've "talked" on the practice's forum! :)

 

EAMom and Nancy, thank you for your very kind and helpful replies. I have some questions that may seem elementary but I really don't understand some things:

 

How is yeast overgrowth controlled at such high doses of antibiotics? This, along with the risk of AB resistance seem to be of big concern of my docs. Son weight 80lbs. Do the PANDAS concerns trump the concern of long term, high dose AB? What are the real risks of AB resistance?

 

I may be wrong, but my limited understanding from this board is that Azithromycin targets strep in one manner, and Augmentin in another (the medical reasons went a bit over my head). If he has responded to the Z 250mg every other day, does that mean he wouldn't respond to Augmentin? I probably misunderstood him, but my doctor also said something about Augmentin basically is amoxicilin, plus somehing to extend the half life, so amox 3x/day was basically the same? If we try the higher dose Azithro would we do it for a set amount of time, hoping it achieved "remission" then drop down to a lower prophylactic dose for school?

 

The tests. I know this sounds stupid, but I don't get how to do them. Do you order the CaM Kinase II test (how?) or the Lyme test (from the website mentioned on this board, I'm forgetting the name right now), does it arrive in the mail or something? Do you go to a lab to draw blood and they mail it off? Do our current doctors order it, do I prepay for it and hope insurance reimburses us? Who reads/interprets the results? I don't understand CaM Kinase - what does it tell the interpreter? I don't know what myco p is. Feel free to talk down to me on this one, I really don't get this.

 

Involving one of the PANDAS gurus: do we fly out to see them, or is it possible for them to advice us over the phone/emails? If so, how is payment made?

 

I know these questions probably sound stupid, thank you for all your help!

 

Thank you!

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I can help you with the Cunningham contact info...

 

Tel 405-271-3128

Lab 405-271-2133 X47455

FAX 405-271-2217

email: madeleine-cunningham@ouhsc.edu

 

She mails you a kit.The cost of running the test, I believe, is $400. Insurance does not cover it but it is consider a charitable donation since it is research so you can claim it on taxes.

Edited by Vickie
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It sounds like you've been very aggressive/proactive! One thing that jumped out in your post was that as soon as you took him off the antibiotics, he started to backslide. Have you had all the members of your family checked for strep - cultures and titers? If someone in your household is a carrier, that would explain why he only does well while he's on the antibiotics.

 

As for Lyme testing, it's tricky, so try to find a Lyme-literate doctor in your area and have the blood tests run through Igenex Labs - they are most accurate, although I understand false negatives are still possible. I believe you can find a doctor by looking on www.ilads.org.

 

I wish you the best in figuring this out. And welcome to the conversation!

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How is yeast overgrowth controlled at such high doses of antibiotics? This, along with the risk of AB resistance seem to be of big concern of my docs. Son weight 80lbs. Do the PANDAS concerns trump the concern of long term, high dose AB? What are the real risks of AB resistance?

 

Yeast overgrowth seems to vary from kid to kid; maybe there's a genetic predisposition for it, as there are so many things? At any rate, most of us here, I think, are big believers in probiotics to help replace and encourage continued growth of the gut flora. Our DS, for instance, takes about 150 billion units of various probitiocs daily: sach b, bifo, lactobillus, etc. For the most part, they're all supplements available at places like the Vitamin Shoppe or Whole Foods, or you can order them from a place like Kirkman Labs on-line. There're also brands like Culturelle that you can find at your local grocery or drug store. The key issue would be to make sure and incorporate flora beyond one of the most common type, acidolpholus, which is found in yogurt and kefir but is readily killed off by most antibiotics. Common advice is to try and space probiotics a couple hours on either side of dosing antibiotics so as to give them the best chance of repopulating the gut without interference. Sach b. is an exception, as it isn't susceptible to being killed by abx, and it's a "good yeast" that helps crowd out the bad yeast (candida, in particular) so that it can't flourish unabated.

 

It's only my opinion, but yes, PANDAS concerns outweight the concern of long-term abx. And, according to our pediatrician, who is not even on board with the PANDAS but continues to prescribe our DS's abx under her "do no harm" oath, does not feel that abx resistance is of any real concern so long as we're not continually switching and/or reaching for broader and broader spectrum abx choices. My DS has been taking Augmentin XR for about 9 months now, and the doctors we see do not perceive any particular risk in this regard.

 

I may be wrong, but my limited understanding from this board is that Azithromycin targets strep in one manner, and Augmentin in another (the medical reasons went a bit over my head). If he has responded to the Z 250mg every other day, does that mean he wouldn't respond to Augmentin? I probably misunderstood him, but my doctor also said something about Augmentin basically is amoxicilin, plus somehing to extend the half life, so amox 3x/day was basically the same? If we try the higher dose Azithro would we do it for a set amount of time, hoping it achieved "remission" then drop down to a lower prophylactic dose for school?

 

Unfortunately, I don't think there's a pat answer to this. Some kids respond best to azith, some kids respond best to augmentin. Some kids respond to one or the other for a while, then they seem to stop responding well, and the docs switch to the other med, and improvement continues. Some docs even pair up the two and see even better responses. Augmentin is amoxicillin plus clavulanic acid, so, yes, it is different from regular amoxicillin. Though research is still underway, at least one of the PANDAS specialists feels that it is the clavulanic acid itself that makes augmentin as effective as it appears to be against PANDAS. There are also studies underway about the possible antidepressant characteristics of clavulanic acid (you can Google it). The XR form of Augmentin is the one that many families (including mine) have found to have particular efficacy, and it is theorized that the time release nature of the XR is what plays a role there; similarly, azith has one of the longest half-lives of available abx (something like 73 hours, I think), so that same duration of activity in the bloodstream might be a key to why these two drugs seem to work for so many of our kids.

 

If you poke around here on the forum some more, you'll see a lot more discussion and investigation into the nature of these abx and why they seem to work. Truth it, nobody's entirely sure at this point, and because azith and augmentin are entirely different classes of abx, too (azith is a macrolide while augmentin is a b-lactam), and each of these is thought to have some different characteristics that can come to the aid of PANDAS. For instance, macrolides are thought to be anti-inflammatory and possibly immune modulatory, while b-lactams are thought to be glutamate modulatory and glutamate is increasingly thought to be at the heart of OCD behaviors. So, in the end, it might ultimately be found that your choice of abx for PANDAS might be guided, at least in part, by what set of PANDAS behaviors are most prevalent in your child.

 

Yes, you could try a higher dose for a period of time, achieve behavioral results that you perceive to be acceptable or even potentially "back to baseline," and then drop back down to a prophylactic dose. In most cases, it's been suggested that you decrease the dosage slowly and see what behavioral results appear, if any. Frankly, we haven't moved down from the high dose at this point, so someone else would probably be better experienced in responding to that particular piece of the puzzle.

 

The tests. I know this sounds stupid, but I don't get how to do them. Do you order the CaM Kinase II test (how?) or the Lyme test (from the website mentioned on this board, I'm forgetting the name right now), does it arrive in the mail or something? Do you go to a lab to draw blood and they mail it off? Do our current doctors order it, do I prepay for it and hope insurance reimburses us? Who reads/interprets the results? I don't understand CaM Kinase - what does it tell the interpreter? I don't know what myco p is. Feel free to talk down to me on this one, I really don't get this.

 

Vickie's given you Dr. Cunningham's contact information for the CamKII testing and yes, you order it directly from her lab. You then take it to a local lab (like Quest) to have the blood drawn, and the test kit gets mailed back to Cunningham. Search for the Cunningham/CamKII threads here, as there are some good tips here about making sure in advance that your local lab will do the draw for an outside test, whether or not you'll need to ask your doctor for a lab order to accompany the Cunningham kit, etc. Cunningham will interpret the results and send you a full write-up and explanation. As for what CamKII itself indicates with regard to PANDAS . . . that's a LONG answer, and better put forth by someone more scientifically minded than me. But again, if you search the threads here, there is a LOT of information available specifically on this topic.

 

Lyme testing (Igenex) I imagine is a similar process, though we've not done it. I imagine either a thread here, Igenex's web site or one of your doctors can help you with that. Other blood draws relative to immune function, strep, myco p, etc. would be ordered by either your doctors or one of the PANDAS specialists; these are more common and chances are that your insurance will cover at least a portion of the cost. It would be my understanding, meanwhile, that insurance does not cover Cunningham ($400), and I don't know about Igenex.

 

Myco p is just another common bacterium that has been found to play a role in PITANDS.

 

Involving one of the PANDAS gurus: do we fly out to see them, or is it possible for them to advice us over the phone/emails? If so, how is payment made?

 

The PANDAS gurus differ in terms of treatment options. Dr. K. you can email initially (short and sweet) and he'll give you some feedback; he will also consult with your local doctor if you have one that's willing. And he'll do phone consultation directly with you as well. Dr. T. will do the same. It's my understanding that insurance will not cover phone consultations, however. You can, of course, fly out to meet with any of them, or find one closest to you and see if flying or driving makes the most sense. You would have to check with your insurance company to see if they would cover the visit fee and to what extent. One of the doctors, Dr. K., was actually in our PPO so our consultation with him was covered to the same level as any other doctor visit. As for treatment, however, that is another issue. IVIG is particularly unpredictable in terms of insurance coverage and will depend largely upon what immune issues may be discovered to be at play for your child. When there is an established immune deficiency, some of these PANDAS docs have been successful in helping advocate for coverage of the procedure. For most insurance companies, though, a PANDAS diagnosis is not sufficient for reimbursement.

 

I know these questions probably sound stupid, thank you for all your help!

 

No question is stupid; I certainly remember first landing here at the forum and feeling overwhelmed! But when a particular subject (like CamKII) is something you need to know more about, drop it into the search box and read for a while from the related threads. This place is a veritable encyclopedia of all things PANDAS, and there's no way any one of us, however battle-hardened and experienced, could respond fully to all your questions with ALL the information and insights available!

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I've been reading here for months, and thank you all for the incredible information you are sharing. We're a bit lost right now, and I'm worried we haven't been treating our son as aggressively/correctly as your children, but I'm not sure. I know this is long, but thought the whole history was important to understand our situation. ANY advice you could share would be appreciated more than I can convey.

 

Thank you!

 

Son 11, starting Middle School few weeks, dealing with tic/OCD problems for 2 years. He’s an otherwise healthy, smart, outgoing kid.

 

Summer 2008 moved from VA to TX, stressful, some mood/anger issues over summer.

 

Fall 2008: Neck jerking out of nowhere - age 10.

 

Winter 2008: Pediatrician swab test negative for strep, so never considered PANDAS. Worried dealing with TS.

 

Winter 2008-Fall 2009: Tics changed from neck jerking, throat clearing cough, eye rolling, and back again. During this time had a chicken pox vaccine, braces. Swine flu scares, son never (showed signs of being) sick. Told son would outgrow the tics.

 

By Fall 2009, eye rolling and neck jerking escalating, depressed, finally admitted anxiety over unwanted and scary thoughts/images, like the devil was going to get him, worried going to ######, always apologizing to God, 2012, getting swine flu/diabetes, etc. Worried fat, not muscular (he’s very athletic, bit small/light for his age).

 

Nov 2009: Found Neuro-Sensory specialists who specialize in role of immune/neurotransmitter disorders and relationship to CNS disorders/autism/processing disorders. They felt son had underlying methylation disorder the predisposes his immune system to have problems ridding body of viruses/bacteria. Believe IS not strong enough to kill viruses (T cell imbalance) so B cells overcompensate and result in inflammation of CNS and mixed signals leading to tics. (As baby had allergies, ear tubes, slow to talk, some slight processing issues, normal kid strep sicknesses, then rarely missing a day of school in elementary school - belief because his T cells weren’t able to do their job, so he was sick, yet never showed signs of it, but the continued taxing of his IS/inflammation of his nerves would increase). Believe that if fix immune system, body can rid itself of viruses and heal its nerves. Went on immunity building supplements (B12/FA/P5P, micellized D3, omegas, zinc, magnesium, etc.) as well as antivirals (amantadine 100mg and acyclovir 200mg daily plus hydrocort 10mg as needed. He also did a 5 day Zpack of antibiotics. Blood tests: ASO titer 413, DNASE B Antibody 273, homocystein & D levels low, leading them to believe dopamine was low and that played role in tics emerging. .

 

Nov 2009-April 2010: We had our son back. Tics stopped 90%, his depression/anxiety left, he dramatically improved in sports and school, no spring allergies, and was very happy and confident. The belief was his IS was strengthened, able to decrease viral overload, resulting in less inflammation of CNS. So...I guess PITANDS? In Spring had teeth extracted and braces put back on, some jaw grinding tics but nothing that was interfering with his life.

 

April 2010: Stopped antivirals, zinc, magnesium for a week, and saw some regression so put back on. Near end of month, scary regression. Tics came back (not fully) but disturbing images came back hard (mostly scrupulosity/blasphemous thoughts). Very depressed and scared. With this presentation doctors felt it was PANDAS, and started him on antibiotics: zithromycin 250mg every other day and diflucan 100mg twice a week, and probiotics twice a week. Blood tests: ASO 389, DNASE B Antibody 191. Within a week we had our son back.

 

April 2010 to June 2010: All scary stuff went away, but only thing to not go away was anxiety over body image, but we hoped it was waning. Beginning with a high stress time in June, had increasingly irrational worry he was too small yet terrified of getting fat. Could barely get him to eat 1000 calories, and he was obsessed/depressed and worrying non stop. Needed constant reassurance that what he is eating is ok, always asking if he is too skinny/too fat.

 

July: Doctors rx’d oxytocin, not to treat source but the symptom of anxiety. Worked great, he was eating again (although vigilant) and happy gain. Happiest we’ve seen him. Felt we had turned the corner. End of July marked end of antibiotics (11.5 weeks) and we discontinued. With slow regression, after 2 weeks off he was miserable again. He said he thought the tics and bad thoughts were coming back, and obsessive worry about his size got worse.

 

August: Put him back on antibiotics and scary thoughts gone, he’s eating, but still vigilant and concerned, and he’s starting to lose the depression although still very hard on himself. Doctors want to try amoxicillin (3 times a day, don’t know the strength as have to go pick up at pharmacy). Said the zithro inhibits strep from growing and then the IS kills it, but amoxicillin is bactericidal. We are afraid to take him off antibiotics and antivirals.

 

My questions for you all:

 

Were we way off base to approach his treatment this way?

 

Were his antibiotic doses way too low/wrong?

 

Does he have it bad, or mild? We usually thought mild compared to stories I’ve read, and honestly, no one but our family would guess what's been going on with the exception of the tics in Fall 2008 that were so noticeable, but when that depressed and phsycotic thoughts, it felt very bad).

 

He’ll be 12 in November, can we ride out til puberty?

 

Have reached end of what these doctors can do?

 

Lyme testing? IVIG?

 

How manage school, what prophylactic meds?

 

What now???

In my dd's case, an immune deficiency to strep was at play and was likely the reason that antibiotics seemed to stop working. Antibiotics alone cannot irradicate a strep infection if your immune system can't help them. I think a lot of these kids have active infections that antibiotics alone can't wipe out because of immune deficiency. Have you done a pneumococcal antibody panel and checked C3d (circulating immune complexes)levels? If elevated it indicates an autoimmune process going on.

Hope that helps some.

angela

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I'm going to answer your questions in all caps within your message:

 

I've been reading here for months, and thank you all for the incredible information you are sharing. We're a bit lost right now, and I'm worried we haven't been treating our son as aggressively/correctly as your children, but I'm not sure. I know this is long, but thought the whole history was important to understand our situation. ANY advice you could share would be appreciated more than I can convey.

 

Thank you!

 

Son 11, starting Middle School few weeks, dealing with tic/OCD problems for 2 years. He’s an otherwise healthy, smart, outgoing kid.

 

Summer 2008 moved from VA to TX, stressful, some mood/anger issues over summer.

 

Fall 2008: Neck jerking out of nowhere - age 10.

 

Winter 2008: Pediatrician swab test negative for strep, so never considered PANDAS. Worried dealing with TS.

 

Winter 2008-Fall 2009: Tics changed from neck jerking, throat clearing cough, eye rolling, and back again. During this time had a chicken pox vaccine, braces. Swine flu scares, son never (showed signs of being) sick. Told son would outgrow the tics.

 

By Fall 2009, eye rolling and neck jerking escalating, depressed, finally admitted anxiety over unwanted and scary thoughts/images, like the devil was going to get him, worried going to ######, always apologizing to God, 2012, getting swine flu/diabetes, etc. Worried fat, not muscular (he’s very athletic, bit small/light for his age).

 

Nov 2009: Found Neuro-Sensory specialists who specialize in role of immune/neurotransmitter disorders and relationship to CNS disorders/autism/processing disorders. They felt son had underlying methylation disorder the predisposes his immune system to have problems ridding body of viruses/bacteria. Believe IS not strong enough to kill viruses (T cell imbalance) so B cells overcompensate and result in inflammation of CNS and mixed signals leading to tics. (As baby had allergies, ear tubes, slow to talk, some slight processing issues, normal kid strep sicknesses, then rarely missing a day of school in elementary school - belief because his T cells weren’t able to do their job, so he was sick, yet never showed signs of it, but the continued taxing of his IS/inflammation of his nerves would increase). Believe that if fix immune system, body can rid itself of viruses and heal its nerves. Went on immunity building supplements (B12/FA/P5P, micellized D3, omegas, zinc, magnesium, etc.) as well as antivirals (amantadine 100mg and acyclovir 200mg daily plus hydrocort 10mg as needed. He also did a 5 day Zpack of antibiotics. Blood tests: ASO titer 413, DNASE B Antibody 273, homocystein & D levels low, leading them to believe dopamine was low and that played role in tics emerging. .I'D LOVE TO KNOW WHO THIS DOC IS, HE SOUNDS LIKE A DAN DOCTOR (WE USE A DAN DOCTOR FOR OUR BOYS).

 

Nov 2009-April 2010: We had our son back. Tics stopped 90%, his depression/anxiety left, he dramatically improved in sports and school, no spring allergies, and was very happy and confident. The belief was his IS was strengthened, able to decrease viral overload, resulting in less inflammation of CNS. So...I guess PITANDS? In Spring had teeth extracted and braces put back on, some jaw grinding tics but nothing that was interfering with his life.

 

April 2010: Stopped antivirals, zinc, magnesium for a week, and saw some regression so put back on. Near end of month, scary regression. Tics came back (not fully) but disturbing images came back hard (mostly scrupulosity/blasphemous thoughts). Very depressed and scared. With this presentation doctors felt it was PANDAS, and started him on antibiotics: zithromycin 250mg every other day and diflucan 100mg twice a week, and probiotics twice a week. Blood tests: ASO 389, DNASE B Antibody 191. Within a week we had our son back.

 

April 2010 to June 2010: All scary stuff went away, but only thing to not go away was anxiety over body image, but we hoped it was waning. Beginning with a high stress time in June, had increasingly irrational worry he was too small yet terrified of getting fat. Could barely get him to eat 1000 calories, and he was obsessed/depressed and worrying non stop. Needed constant reassurance that what he is eating is ok, always asking if he is too skinny/too fat.

 

July: Doctors rx’d oxytocin, not to treat source but the symptom of anxiety. Worked great, he was eating again (although vigilant) and happy gain. Happiest we’ve seen him. Felt we had turned the corner. End of July marked end of antibiotics (11.5 weeks) and we discontinued. With slow regression, after 2 weeks off he was miserable again. He said he thought the tics and bad thoughts were coming back, and obsessive worry about his size got worse.

 

August: Put him back on antibiotics and scary thoughts gone, he’s eating, but still vigilant and concerned, and he’s starting to lose the depression although still very hard on himself. Doctors want to try amoxicillin (3 times a day, don’t know the strength as have to go pick up at pharmacy). Said the zithro inhibits strep from growing and then the IS kills it, but amoxicillin is bactericidal. We are afraid to take him off antibiotics and antivirals.

 

My questions for you all:

 

Were we way off base to approach his treatment this way? NO, THIS SOUNDS LIKE A VERY KNOWLEDGEABLE DOC BUT MAYBE YOU NEED TO GET SOMEONE ON BOARD WHO REALLY HAS A LOT OF EXPERIENCE WITH PANDAS. PERSONALLY, THE ONLY OTHER THINGS WE ARE DOING THAT YOU ARE NOT ARE THE FOLLOWING: IMMUNE-MODULATING DRUGS (SPIRONOLACTONE, LOW-DOSE NALTREXONE - THEY WORK SIMILAR TO IVIG), CURCUMIN (BRAND: ENHANSA), HIGH DOSE FISH OIL. I FEEL SPIRONOLACTONE AND LDN HAVE BEEN AN AMAZING ADD-ON FOR MY BOYS AND HAS BLUNTED THE AUTOIMMUNE RESPONSE QUITE A BIT. THEY HAVE THEIR UPS AND DOWNS, BUT NOT ENOUGH TO BRING OUR FAMILY TO THE DYSFUNCTIONAL STATE WE WERE IN BEFORE. IF YOU PM ME I CAN GIVE YOU THE NAME OF A DAN PRACTITIONER WHO HAS TWO PANDAS BOYS OF HIS OWN AND CAN PICK UP FROM WHERE THIS OTHER DOC LEFT OFF.

 

Were his antibiotic doses way too low/wrong? MOST OF US DO NOT USE AMOXICILLIN, BUT ZITH IS GOOD.

 

Does he have it bad, or mild? We usually thought mild compared to stories I’ve read, and honestly, no one but our family would guess what's been going on with the exception of the tics in Fall 2008 that were so noticeable, but when that depressed and phsycotic thoughts, it felt very bad). SOUNDS MODERATE/SEVERE, KIND OF LIKE MY 5 YEAR OLD

 

He’ll be 12 in November, can we ride out til puberty? I WOULDN'T COUNT ON IT, SOME DON'T GROW OUT OF IT THAT YOUNG

 

Have reached end of what these doctors can do? NO, IVIG, SPIRONOLACTONE, LDN, EVEN ACTOS. NOT TO MENTION STEROID BURST, STEROID TAPER...

 

Lyme testing? IVIG? HAVE NOT TESTED MY BOYS FOR LYME BUT CONSIDERING IT. WE DID ONE LOW-DOSE IVIG FOR MY 5 YEAR OLD AND IT DID HELP BUT ONLY TEMPORARILY.

 

How manage school, what prophylactic meds? STILL TRYING TO FIGURE THIS ONE OUT MYSELF! GOING TO DO WEEKLY ZITH AND ALSO OLIVE LEAF EXTRACT 3 TIMES A DAY (MANY IN THE AUTISM COMMUNITY GET GOOD RESULTS WITH THIS HERB FOR TREATING/PREVENTING STREP)

 

What now???

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Again, answering in all caps: (one of these days I will figure out how to do that multiquote thing!LOL)

 

Thank you for responding and all the insight you've offered.

 

CJ: Yes! We've "talked" on the practice's forum! :)

 

EAMom and Nancy, thank you for your very kind and helpful replies. I have some questions that may seem elementary but I really don't understand some things:

 

How is yeast overgrowth controlled at such high doses of antibiotics? This, along with the risk of AB resistance seem to be of big concern of my docs. Son weight 80lbs. Do the PANDAS concerns trump the concern of long term, high dose AB? What are the real risks of AB resistance? WE HAD SOME SERIOUS ISSUES WITH YEAST, AND EVEN MORE SERIOUS ISSUES WITH GUT BACTERIA WHICH WOULD CROP UP WITH THE HIGH DOSE ABX. WE RESOLVED THIS (OR AT LEAST CONTAINED IT) BY INCREASING BOTH OF MY BOYS' PROBIOTICS TO 250 BILLION CFU'S TWICE A DAY, SO TOTAL OF 500. WE USE WWW.CUSTOMPROBIOTICS.COM, D-LACTATE FREE FORMULATION. ALSO DIFLUCAN, KETOCONAZOLE, NYSTATIN AND SOMETIMES VANCOMYCIN (FOR GUT BACTERIA)

 

I may be wrong, but my limited understanding from this board is that Azithromycin targets strep in one manner, and Augmentin in another (the medical reasons went a bit over my head). If he has responded to the Z 250mg every other day, does that mean he wouldn't respond to Augmentin? I probably misunderstood him, but my doctor also said something about Augmentin basically is amoxicilin, plus somehing to extend the half life, so amox 3x/day was basically the same? If we try the higher dose Azithro would we do it for a set amount of time, hoping it achieved "remission" then drop down to a lower prophylactic dose for school?

 

The tests. I know this sounds stupid, but I don't get how to do them. Do you order the CaM Kinase II test (how?) or the Lyme test (from the website mentioned on this board, I'm forgetting the name right now), does it arrive in the mail or something? Do you go to a lab to draw blood and they mail it off? Do our current doctors order it, do I prepay for it and hope insurance reimburses us? Who reads/interprets the results? I don't understand CaM Kinase - what does it tell the interpreter? I don't know what myco p is. Feel free to talk down to me on this one, I really don't get this. IT IS A BACTERIA WHICH HAS BEEN IMPLICATED IN TIC DISORDERS. MY 2 YEAR OLD JUST TESTED POSITIVE FOR THE ANTIBODIES, 5 YEAR OLD DID NOT. MANY DOCS WILL GIVE ONE MONTH OF BIAXIN FOR THIS (I THINK).

 

Involving one of the PANDAS gurus: do we fly out to see them, or is it possible for them to advice us over the phone/emails? If so, how is payment made? DEPENDS WHO IT IS. MY PRACTITIONER REQUIRES THAT WE VISIT ONCE A YEAR, EVERYTHING ELSE CAN BE HANDLED OVER THE PHONE.

 

I know these questions probably sound stupid, thank you for all your help!

 

Thank you!

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Welcome--and I am sorry you have had to find the forum! -- but what a good group of parents to be supported by...

 

Our older d has been on "full" strength Amoxicillan for 20 months now, she is 12 years old.

 

(105 lbs, and she takes 500 mg of Amoxicillan twice a day.) She had one of the more "severe" histories on the forum...crippling severe OCD, mild ticcing, anorexia for the first episode (to the point that she was treated at an eating disorders clinic for 3 months, etc. etc.)

 

Amoxicillan has worked for her (along with 2 steroid bursts in the last year and a half.) Our d was very severe.

 

Amoxicillan is the main ingredient of Augmentin -- for us Amoxicillan was key in the long run.

 

Not only did the doctor feel that it was a "lessor" antibiotic but if things were to escalate we could ramp-up on the antibiotic and try a different one IF it was necessary (because we were starting with Amoxicillan...)

 

I wanted to try Azithro (to tell you the truth) but the doctor we were seeing at the time would not prescribe it--It worked, it took time.

 

Probiotics are important--we give a Pearl probiotic pill at least once during the day, 3 hours away from the antibiotics. We also push Kefir and Good Belly juice, both have heavy probiotics (Whole Foods carries all of these.) This has worked for our d, though it took time...time to heal.

 

For our younger d amoxicillan did not seem to help--she is now on Augmentin XR 1000mg twice a day.

 

Both girls get 1000mg of C, 1000mg of D, and 1000mg of Omega 3 -- All to build immune system strength.

So far so good--Best of luck to you-- It sounds to me like you are starting at a reasonable place, and as long as you are seeing improvement keep at it...We were "OK" with Amoxicillan as long as we were seeing week to week improvement (slow improvement...) when it slowed or plateaued we tried a steroid burst and these REALLY helped bring our child back to us--You make changes when you have to, but again, it sounds like if you are seeing improvements, you are doing well--

TMom

Edited by T.Mom
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I can't thank you all enough for your advice and sharing of your experiences; I'm printing out this entire thread to research and plan.

 

I'm so impressed with the support, knowledge, wisdom, compassion and advocacy of the parents in this group - pretty humbled by it. Thank you.

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EAMom and Nancy, thank you for your very kind and helpful replies. I have some questions that may seem elementary but I really don't understand some things:

 

How is yeast overgrowth controlled at such high doses of antibiotics? This, along with the risk of AB resistance seem to be of big concern of my docs. Son weight 80lbs. Do the PANDAS concerns trump the concern of long term, high dose AB? What are the real risks of AB resistance?

 

 

We haven't seemed to have a yeast problem (knock on wood).

 

Yes for us, PANDAS concerns (mental illness, anorexia, perhaps problems persisting into adulthood) trump the concern of long term abs. Our immunologist felt that 250mg/day Azith. was a safe dose for our dd to be on for YEARS. He also felt that peds were unnecessarily fearful of antibiotics.

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