positive anal swab, LOTS of questions, long post

[cynditk]

So my world just got turned upside down-hopefully that's a good thing - I really need some feedback in helping me understand what happened yesterday at a new doctor visit.

 

My 16 YO son developed what appeared to be PANDAS back in April. Sudden onset of neuro-psych symptoms after a strep infection- high ASO titers, Anti-Streptolysin titer. treated him with high dose zithromx and pred which took away his neuro psych symptoms almost immediately, although whenever we backed down on either of these interventions the symptoms would come right back. He had many other physical symptoms that were unexplained by PANDAS that got bad around this time: joint pain, heart issues including extremely low blood pressure/palpitations that were brought on by exposure to heat, severe headaches, severe fatigue, and a crazy rash that no one seemed to be able to explain. The rash has been seen by like 10 doctors. Bright red face like a sunburn, fevers that come and go, and sore throat that comes and goes. Negative for throat swab and culture. I thought a lot of these physical symptoms were due to the prednisone, because we couldn't find any other explanation for them.

 

Previous to this he had a difficult long history- neurodevelopmental issues that started after DPT and then MMR vaccination, hyperactivity, severe food allergies, chronic constipation, chronic ear infections, sensory processing disorder, mild OCD, learning delays. To deal with all this we used supplements/Yasko protocol, DAN protocol.

 

When he was 12 we went off Yasko protocol quickly on the advice of a homeopath and started sequential homeopathy- he crashed and didn't recover for almost a year. developed severe unrelenting fatigue, cognitive decline, other miscellaneous symtoms. testing at this time revealed highly elevated ASO and antidnase b titers, although no PANDAS symptoms, and low IgG subclasses. An immunologist diagnosed with subclass deficiency and treated with low doses of IVIG.

 

On IVIG- For 3 years did well- recovered about 60% of his functionality, though still suffered from fatigue, joint pains, learning delays, SPD, low grade fevers that would come and go, constipation, food sensitivities.

 

Fast forward to yesterday- met with a PANDAS specialist doc, the first we have seen. Dr.Keller in Redmod, WA. She swabbed him both orally and anally-oral was negative, anal was positive. She said the zithromax and IM bicillin we treated him with had not treated the acute infection, that he had been battling the same strep infection since April. She thought that he had been dealing with it on and off throughout his life, and that the thing that happened when he was 12 was a PANDAS episode, and that it has gotten progressively worse until this latest round with the neuropsych symptoms.

 

She felt the IVIG had helped him cope, but did not solve the problem. She feels that methylation defects are responsible for a lot of the PANDAS she is seeing, and she has seen a lot and she says successfully resolved with treating the infections and then the methylation cycle defects due to genetic mutations, and that for patients with defects in their methylation cycles that they could heal their PANDAS by first dealing with the strep infections with antibiotics, then prophylactic antibiotics to prevent re-infection, and then treating these defects- which makes some sense to me because my son did great on the YASKO protocol, and that is at the heart of it. for kids without the methylation cycle defects antibiotics and high dose IVIG can address it. I hope I'm getting this right, I don't totally understand it yet.

 

She wants Lucas on clindomyacin for 10 days to treat the acute strep, and then retest to see if he's negative at that point. In the meantime, off the zithro, and she thinks we can more aggressively get him off the prednisone he's been on for 4 months now that we were slowly tapering. She says that the pred has been treating the inflammation of the PANDAS, but once we treat the acute infection hopefully he can off the pred quickly. She says the rash is a strep rash and that he may have rheumatic fever, wants him to get an ECHO to rule out.

 

She doesn't think IVIG is treating his PANDAS. We have never been on high dose IVIG, just low dose for his IgG subclass deficiency. IVIG does help him a lot. She thinks once we treat the acute infection he can go onto supps that support his methylation cycle, and eventually that will prevent him from having any more PANDA flares.

 

Here's a question- we have an appointment to see Dr.Bouboulis in 2 weeks, she thinks we don't need to go. Its a long trip for us as we are in Seattle, and due to Lucas being so sick it would be a very hard trip on him. Should we go just to keep that door open, or should we try what she says and drop the high dose IVIG route for now? My son has been mostly housebound since April so he is severely affected, and I am loathe to give up this option, but my husband is very excited by the new doc's assurances that we don't need to go and can save our money. Thoughts/advice/ feedback???

[HT's Mom]

Oh, my goodness, you poor thing. You and your son have been through so much. I can't comment on all of the medical things you have been through or tried, but I would suggest that you try to get a conference call or email with Dr. B to give this recent information and see what he says about doing the high dose IVIG now or waiting until the strep is more directly treated. Also, ten days only of Clindoymcin does not seem long enough to completely clear this long term strep infection. Many of us do not see PANDAS neuropsychic behaviors improve before at least ten days, especially older kids with long term symptoms. Thirty days minimum is where most start as an initial treatment. (Perhaps different with Clindoymcin vs. augmentin or other abx?) I would also say that high dose IVIG could make all the difference vs. low dose for the immune issues. My own son is 16, had high dose IVIG in May with dr. k in Chicago. He is much much better than before the treatment, but age does make it harder to clear apparently and we are likely going to seek a second because of some residual behaviors/obsessive thoughts. But ds has his life back for the most part. Dr. K virtually always treats PANDAS with high dose.

 

Good luck, I hope your son gets relief soon.

Edited October 4, 2011 by HT's Mom

[kimballot]

Oh Dear - you have had quite the roller coaster ride. I am not at all familiar with methylation cycle, but saw so many similarities between my ds14 and yours that I will be googling this tonight! Thank you!

 

As for your appt. with Dr. B - are you going out there for an initial appointment, or were you planning to do IVIG while you were there? I am wondering why you can't to HD IVIG where you are getting IVIG now.

 

Dr. B is wonderful, but it is difficult to chase two rabbits at once. If you are feeling positive about this new protocol, why not see if you can do one course of HDIVIG at home to see if it makes a difference and then put a hold on the IVIG for a while as you eradicate the strep (at least she can continue to do anal swabs until you see that it is going away), and try the methylation treatments. You can call and cancel your appt. with Dr. B and reschedule. It will probably be a couple of months before you can get in with him again and by then you will have a better idea of the strep situation, the methylation situation, and the HD IVIG effects. I suspect even if your son is doing better you may want to see Dr. B anyway at that point for additional input.

 

Please keep us posted on how things go!

[tpotter]

I am actually following what you are saying that she said. And, although I agree with what she is saying...in part...there are too many things that I have to respectfully disagree with.

 

I also have 2 older children who have had PANDAS/Lyme/and who knows what else going on (probably the methylation stuff, too.) I totally agree that it's important to treat all the infections, but you may be dealing with a lot more than just the strep (e.g. lyme, viruses, staph are just some of the few that many families are starting to find have been added to the mix.)

 

I don't know this PANDAS specialist that you are seeing, but no matter. I have been in the boat where I only had 1 specialist, and I have since learned that I need multiple specialists, because this is a very complicated disorder. It is immunologic, neurologic, psychiatric, and then if it turns out there's lyme/co-infections, you would need an LLMD. We use all of the above, and then some (we also see a holistic chiropractor and have a DAN dr.) Only one of our doctors is local. This is the most calm I've been since my children "knowingly" got sick (my oldest may have had this since birth.) The reason I'm calmer is because I now have a team of doctors. Yes, I am the "team leader"...not by choice, but by necessity. And, I do think it's necessary to have all these people involved in our personal case.

 

I also don't think that 10 days of clindomycin is enough. We did 2 months of IV cleocin this summer, and are now still doing long term oral clindomycin + other abx at the same time. 10 days is not going to clear up something this embedded. Also, we've done PEX and a lot of IVIG. Both the PEX and IVIG (all HD) have made a huge difference for my kids, as it helps the body fight the infections they have. We are also now starting on anti-virals. I do tell each doctor what the others are prescribing, so there's no problem from that end.

 

Here's another thought when you are deciding which way to go. 1) What if you decide that this isn't working? You haven't established any other person to go to (this has happened repeatedly to us.) 2) What if the doctor you are currently seeing has something happen, and isn't available for you (one of our 1st doctors had 2 terrible tragedies happen while she was seeing my children...one happened a few days after IVIG. Thank goodness we had seen a 2nd specialist recently, because I was able to call that one for followup information. The 2nd time, I didn't have any backup, and trust me...it was a very chaotic time, and took almost 8 months until DS finally got the treatment he was needing and was supposed to have gotten 8 months earlier!

 

My opinion...since you asked...get another specialist on board, both for backup, and for another opinion. I really think that immunology is a HUGE part of the equation, and I truly believe you need an immunologist who is knowledgable in PANDAS to help you make these decisions. Dr. B., in my opinion, has my vote. That doesn't mean that your local dr can't be your primary treater...it just means that there's a 2nd person to consult on this terribly complicated disorder.

[cynditk]

I am actually following what you are saying that she said. And, although I agree with what she is saying...in part...there are too many things that I have to respectfully disagree with.

 

I also have 2 older children who have had PANDAS/Lyme/and who knows what else going on (probably the methylation stuff, too.) I totally agree that it's important to treat all the infections, but you may be dealing with a lot more than just the strep (e.g. lyme, viruses, staph are just some of the few that many families are starting to find have been added to the mix.)

 

I don't know this PANDAS specialist that you are seeing, but no matter. I have been in the boat where I only had 1 specialist, and I have since learned that I need multiple specialists, because this is a very complicated disorder. It is immunologic, neurologic, psychiatric, and then if it turns out there's lyme/co-infections, you would need an LLMD. We use all of the above, and then some (we also see a holistic chiropractor and have a DAN dr.) Only one of our doctors is local. This is the most calm I've been since my children "knowingly" got sick (my oldest may have had this since birth.) The reason I'm calmer is because I now have a team of doctors. Yes, I am the "team leader"...not by choice, but by necessity. And, I do think it's necessary to have all these people involved in our personal case.

 

I also don't think that 10 days of clindomycin is enough. We did 2 months of IV cleocin this summer, and are now still doing long term oral clindomycin + other abx at the same time. 10 days is not going to clear up something this embedded. Also, we've done PEX and a lot of IVIG. Both the PEX and IVIG (all HD) have made a huge difference for my kids, as it helps the body fight the infections they have. We are also now starting on anti-virals. I do tell each doctor what the others are prescribing, so there's no problem from that end.

 

Here's another thought when you are deciding which way to go. 1) What if you decide that this isn't working? You haven't established any other person to go to (this has happened repeatedly to us.) 2) What if the doctor you are currently seeing has something happen, and isn't available for you (one of our 1st doctors had 2 terrible tragedies happen while she was seeing my children...one happened a few days after IVIG. Thank goodness we had seen a 2nd specialist recently, because I was able to call that one for followup information. The 2nd time, I didn't have any backup, and trust me...it was a very chaotic time, and took almost 8 months until DS finally got the treatment he was needing and was supposed to have gotten 8 months earlier!

 

My opinion...since you asked...get another specialist on board, both for backup, and for another opinion. I really think that immunology is a HUGE part of the equation, and I truly believe you need an immunologist who is knowledgable in PANDAS to help you make these decisions. Dr. B., in my opinion, has my vote. That doesn't mean that your local dr can't be your primary treater...it just means that there's a 2nd person to consult on this terribly complicated disorder.

 

 

 

Thanks so much for this feedback...this is what my gut is telling me! Also we just saw an LLMD last week, and after looking at Lucas' labs she basically told us that Dr.B was our only hope, that in her opinion, my son had Lyme- none of his Lyme/co-infection labs came back positive because the infections were too imbedded, his immune system had been wrecked, antibiotics would not be nearly enough. She sent us away by saying that dr.b was our only hope. That was last week, and this week we get this extremely confident doc saying she can treat my son and not to worry, she knows what to do. WHEW! Talk about from one extreme to the other...my head is still spinning!!! This would be our first appointment with dr.B, and it feels right to have a back up specialist on board.

[LNN]

The others have given you good food for thought on whether to keep your Dr B appt. And I'm sorry but I don't know anything about the Yasko protocol. But what you describe is not a neat, simple situation. I would be surprised if there were one, neat, simple diagnosis. I subscribe more and more to the "overflowing bucket" philosophy, where a few things early on can fill the body's bucket and from then on, every illness, environmental insult, or what-have-you then causes the bucket to overflow. It's more than the system can handle. So you need to start peeling things away, one by one, to relieve the load.

 

There's so much you can't convey in a post and I'm sure there are small and big things you've left out. It could very well be that Pandas is a big or at least a part of your picture and I would certainly encourage you to explore that aspect. As TPotter mentioned, tick-borne illnesses and other things can also contribute a similar list of symptoms. I only want to say that a few symptoms you mention - joint pain, severe headaches, intermittent fevers, unexplained rash, bright red cheeks - these are not commonly big Pandas symptoms. They are more common in lyme and probably several other illnesses. The light/noise SPD issues can be common to both babesia and heavy metals issues. The crashing when not on prednisone is telling - just don't know what it's telling of. 4 months would be an incredibly long time for a Pandas kid to be on prednisone. It suggests either a dependency (maybe due to length of treatment?) or severe inflammation, like a lupus sort of thing (and I know nothing about lupus - so not suggesting that's at play). What's also notable is that you don't mention the two "biggies" of Pandas - OCD and/or tics. Not that I wish these on your son, but mild generally isn't how Pandas parents describe their kids' OCD.

 

To me, it just doesn't fit neatly into one single, unifying label. I'm no doctor and I'm not trying to second guess anyone you've seen. I'm not saying there isn't a Pandas component to what you're dealing with and I don't want to discourage you from seeking treatment in the best way you see fit. Absolutely follow your instincts here. I just suggest you don't forget about the "outlier" symptoms. They have always come back to kick my butt when I thought we had finally found "the" answer. So now I pay attention to all of them and when something doesn't fit, I realize I may be working on more than one puzzle.

 

I do hope your son responds well to treatment and that relief comes to you and your family quickly.

[JuliaFaith]

Just PM'd you.

[cynditk]

The others have given you good food for thought on whether to keep your Dr B appt. And I'm sorry but I don't know anything about the Yasko protocol. But what you describe is not a neat, simple situation. I would be surprised if there were one, neat, simple diagnosis. I subscribe more and more to the "overflowing bucket" philosophy, where a few things early on can fill the body's bucket and from then on, every illness, environmental insult, or what-have-you then causes the bucket to overflow. It's more than the system can handle. So you need to start peeling things away, one by one, to relieve the load.

 

There's so much you can't convey in a post and I'm sure there are small and big things you've left out. It could very well be that Pandas is a big or at least a part of your picture and I would certainly encourage you to explore that aspect. As TPotter mentioned, tick-borne illnesses and other things can also contribute a similar list of symptoms. I only want to say that a few symptoms you mention - joint pain, severe headaches, intermittent fevers, unexplained rash, bright red cheeks - these are not commonly big Pandas symptoms. They are more common in lyme and probably several other illnesses. The light/noise SPD issues can be common to both babesia and heavy metals issues. The crashing when not on prednisone is telling - just don't know what it's telling of. 4 months would be an incredibly long time for a Pandas kid to be on prednisone. It suggests either a dependency (maybe due to length of treatment?) or severe inflammation, like a lupus sort of thing (and I know nothing about lupus - so not suggesting that's at play). What's also notable is that you don't mention the two "biggies" of Pandas - OCD and/or tics. Not that I wish these on your son, but mild generally isn't how Pandas parents describe their kids' OCD.

 

To me, it just doesn't fit neatly into one single, unifying label. I'm no doctor and I'm not trying to second guess anyone you've seen. I'm not saying there isn't a Pandas component to what you're dealing with and I don't want to discourage you from seeking treatment in the best way you see fit. Absolutely follow your instincts here. I just suggest you don't forget about the "outlier" symptoms. They have always come back to kick my butt when I thought we had finally found "the" answer. So now I pay attention to all of them and when something doesn't fit, I realize I may be working on more than one puzzle.

 

I do hope your son responds well to treatment and that relief comes to you and your family quickly.

 

 

yep, i second everything you said. I actually was kind of hoping the LLMD, who was trained by Dr.Jones, would tell me there was Lyme and we should go after it, because clearly he doesn't fall neatly into the PANDAS box. A lot of the (physical)symptoms I've described go along with immune deficiency that's not being adequately treated- I hear about a lot of these types of symptoms on the immune deficiency boards, and the LLMD's response to that when I told her that was that all those kids probably have Lyme. She said sometimes the tests don't come back positive until a year into treatment.

 

I just can't believe we've been treating with Zith for 5 months now and he still has an ACUTE strep infection. Clearly his immune system is not able to kick it on its own. As far as the pred, whenever we tried to lower it, and we tried several times, the neuropsych stuff came roaring back- but maybe like you suggest, that's not PANDAS but something else. Although too maybe it's more of a teenaged presentation- my son is 16 and most kids are a lot younger when they present.

 

Anyway this doesn't feel like an easy fix either- we've been at this for so long that it is very hard for me to believe that it could be as easy as she made it sound.

[cynditk]

yep, i second everything you said. I actually was kind of hoping the LLMD, who was trained by Dr.Jones, would tell me there was Lyme and we should go after it, because clearly he doesn't fall neatly into the PANDAS box. A lot of the (physical)symptoms I've described go along with immune deficiency that's not being adequately treated- I hear about a lot of these types of symptoms on the immune deficiency boards, and the LLMD's response to that when I told her that was that all those kids probably have Lyme. She said sometimes the tests don't come back positive until a year into treatment.

 

I just can't believe we've been treating with Zith for 5 months now and he still has an ACUTE strep infection. Clearly his immune system is not able to kick it on its own. As far as the pred, whenever we tried to lower it, and we tried several times, the neuropsych stuff came roaring back- but maybe like you suggest, that's not PANDAS but something else. Although too maybe it's more of a teenaged presentation- my son is 16 and most kids are a lot younger when they present.

 

Anyway this doesn't feel like an easy fix either- we've been at this for so long that it is very hard for me to believe that it could be as easy as she made it sound.

[MomtoJake]

HI there! I just wanted to throw something out there concerning the red cheeks, low blood pressure, joint pain symptoms. This May, my DH had to be taken by ambulance to the ER after gastric pain and passing out- blood pressure was very very low. ER stabalized him and sent him home with no diagnosis. He then developed severe, debilitating joint pain. A rhuemetologist ran some tests and it was Human Parvo Virus or the common childhood Fifth's Disease. He had a severe auto immune reaction to this virus! In kids it is also called "slapped cheeks" because of the tell-tale rash on the cheeks and sometimes continuing down the trunk. In the following weeks of the summer all of us fought strep including my DS, then DS showed the symptoms of Human Parvo Virus- bright red cheeks etc. This plus undiagnosed Celiac disease created the perfect storm for my DS sudden onset of PANDAS symptoms. My DH recovered from the Parvo, but his immune system is ok. In your DS, it is not. Just a thought- a simple blood test could confirm or deny.

 

On another note, your discussion of methylation defects hit home for me. When my DS was younger he was on a DAN protocol in part for methylation issues. He did so well and improved so much that he was taken off the supplements eventually. I have a feeling that this is yet another contributing factor for our recent issues. We never did YASKO, but perhaps I should put that on my list to look into. Another poster in this thread talked about peeling away things one at a time- This makes a lot of sense to me and I think it is a good way to find focus! I was feeling a bit overwhelmed, as I know you must be. Hang in there!

[AmySLP]

On a positive note, my daughter did kick strep infection that had been difficult to erradicate for 6-7 months with all other ABX, with a 10 day dose of Clindamycin. SHe was younger (4) than your son. It stopped the PANDAS symptoms for nearly a year. I hope for your son's sake, it is as successful for him.

[dcmom]

Hi!

A few thoughts:

 

The red cheeks and muscle aches could be from the prednisone. Prednisone lowers potassium levels, which can cause aches and red cheeks - we have seen this with my daughter. You cannot supplement with potassium (maybe with a doc), but you can increase intake with food (bananas, oj, mil, cantaloupe).

 

I think you said your son has been on steroids for 4 mos. We do lots of steroids to help with pandas, I have done some research and always supplement with calcium and increase potassium intake via food.

 

My two daughters (pandas) both have contracted strep while on zithromax and augmentin at the same time. Ten days of clindamycin cleared the infection. (clinda is a pretty heavy duty abx, so I would see what happens after 10 days...)

 

For us (pandas), once the infection is erradicated, we have the autoimmunity to deal with, we use steroids, IV steroids, or oral steroids.

 

The hallmark of pandas is sudden onset or ocd and/or tics plus other symptoms. Your son certainly doesn't fit neatly in this box, although some of his symptoms do sound like a mix of post strep disorders.

 

I don't see why you cannot follow the approach of both docs (I totally agree with the need for multiple pandas specialists- we do this also). It makes sense that the first thing to do is erradicate the infection. However, many parents find that immune modulation or anti inflammatory is then needed, which would be your high dose IVIG (currently the protocol for pandas, even being studied by the NIH). If the IVIG helps, I would follow that path. I think parents need to continue with what works, and discontinue what doesn't. At the same time, hopefully the IVIG gets him in better shape, and you can try the new doc's methylation support.

 

If your doc thinks your son has pandas plus methylation issues, and that she can "cure" the methylation part- that sounds plausible. If she is talking about a "cure" for pandas, I am skeptical. Currently, PANDAS is thought to be an autoimmune disorder. IMHO we can work hard to get, and try to keep, pandas in remission- but I would be very skeptical of a doc that said they could "cure" it. Autoimmune disorders as a whole are very tricky, and frankly if a doctor has a cure for them they would be up for major awards!

 

Good luck!