RNmom

Re: "When I got to the ER, no one seemed overly concerned about a teenage boy showing up with a possible fractured clavicle, because he got into a fight with his brother. Even though we know it was way more than normal (and so would you guys), it seems relatively normal to "regular" people, so there's not all the wondering what we may have "done" to our kids. "Unfortunately", I actually appreciate something like that!" Hi tpotter, Sadly, I understand this statement. How many of our kid's Lyme / PANDAS symptoms are filtered through medical or social or psych lenses and sorted into categories such as developmental or behavioral or "whatever the medical community is willing to diagnose - just not Lyme or PANDAS!" In this case, the "ER filtering system" worked in your favor leaving you free to continue on your Lyme / PANDAS journey. It seems that you are on the downhill slope - the descent just got a little steep and overwhelming last night for your whole family. We follow behind you... plasmapheresis last July... then Lyme dx... now almost 30 days on daily Doxy and Diflucain, as well as bi-weekly Bicillin...getting ready for Rifampin alt. with Zithromax for Bartonella (the worst psychiatric offender of all the Lyme co-infections)... I am reading every post on herxing that I see as I get ready for this next treatment cycle. Before we start the Rifampin I have one last consult with a new LLMD (new for us - he has been treating Lyme for 30 years). He is known for tackling the yeast before treating the Lyme. He has said that Diflucain is not as effective against some of the newer strains of yeast (which can cause some raging, FYI). He uses Nystatin and a new one called Vfend. I am seeking his opinion as to whether we should tackle yeast aggressively over the next two weeks then start the Rifampin, or do both at the same time, or just stick with the current plan. I will share the results of tomorrow's consult with you and the forum in case it might be useful. I am glad to see that you are keeping your sense of "irony." It also sounds like your family works well together even (and maybe particularly) in the worst of times. Thank you for sharing this and giving us all a "heads up" about how rocky the treatment process can get. And, I too know my ds14 has both PANDAS and Lyme...

Oh gosh, My ds14 does some of this when he is having a symptom flare. The "biting the arm" symptom occurs when he "feels this pressure inside." (his words) I just want to offer up a few questions that might help in your search for answers: What type and dose of antibiotics is he on for long term prophylaxis? Have you been able to test him for Lyme and Lyme co-infections? My ds14 had plasmapheresis last July with 65% improvement. We were thankful but concerned when his improvement stalled at 65% at 8 weeks post plasmapheresis. We did some research and tested him for Lyme using My Lyme ID (Igenex test is also good). He is positive for Lyme and Bartonella. Note: Bartonella is notorious for psychiatric and neurologic symptoms. We are hoping that by treating the Lyme (which takes a while) our son will continue to heal. My Lyme ID is a newer test. It is considered to be good for people who are immunosupressed as they do not always make antibodies to the Lyme etc. The other tests rely on antibody measurements. My Lyme ID looks at other markers. That is just FYI. Next year, the Institute of Infectious Diseases will be issuing a recommendation to all doctors about this testing. Hopefully, clear recommendations will benefit everyone. In the meantime push hard to get your child tested with the most accurate tests possible. Our ds14 was tested twice for Lyme over the last two years with standard Western Blot and Eliza. His results were negative each time. Yet, his clinical exam one month ago demonstrated that he had the Bartonalla rash (100% diagnostic)for the past two years. I first saw the rash (which looks like red stretch marks) on his lower back during the summer of 2009. I thought "that is an unusual place for stretch marks." However, as he was having a significant and rapid growth spurt at that time, I put it to that. Come to find out, many parents mistake the Bartonella rash for stretch marks. I don't mean to overwhelm you with too much new info. Just want to share why proper testing is so important. Also, to let you know that some of these psychiatric symptoms may be Lyme or a Lyme co-infection such as Bartonella. I hope you find answers that help soon.

This has turned into an amazing thread! I've read it several times to make sure I take in all the helpful information. I am: adding charcoal tablets at night ASAP... ... also that herbal anti-viral tx someone mentioned earlier - Sylmune I think... ... also restarted L-theanine... (he is already on melatonin, milk thistle, folic acid, Calcuim, Vit D, Vit A, magnesium, and Caprylic Acid)... ...diflucain and... ...using medical grade probiotic called VSL #3 Double strength - it is a prescription from our PA... ...other probiotics are Pearls immune alternating with Theralac... I will also look into (and ask our PA about) Rifampin for the Bartonella - so glad to hear that it is ok to wait a few weeks after starting Doxy as our she is out of town next week! I do trust this particular PA for her Lyme and PANDAS knowledge. She is respected by Dr. L., the PANDAS doc who treated our ds14 with plasmapheresis. In fact, quite a few of Dr. L's PANDAS patients see this particular PA for follow up on a variety of issues (such as being on long term antibiotics, etc.). She has treated lots of Lyme patients including her own son who had PANDAS and Lyme. Currently, she is teaching the docs in her group how to properly order Lyme testing and what the latest ILADS protocols are. There is a Lyme literate doc (who is also a DAN doc) in our town. I took the first available appointment in early December for a 2nd opinion. BUT, I am praying that by then my son will be feeling and acting a lot better... I promise to keep the appointment anyway! :-) Thanks again for all the support and help here. Please keep posting any other ideas that come to mind. All the best to all the great PANDAS / Lyme warriors out there!! P.S. My ds14 is still @ 50% to 75% less anxious than he was before the Bicillin shot last Tuesday. But, this Herxheimer reaction is a strong one! Lyme treatment will not be an easy time for him I can tell...

How is your son today? I just saw this post. My ds14 had PEX last July. The first three weeks after the PEX were very rocky. I was very upset thinking, "this isn't going to work." But, very slowly he began to heal - so slowly that I cannot tell you exactly how long before I "saw" improvement. I do remember that at 4 weeks post PEX the whole family agreed that he was getting better. By 6 weeks post PEX the "family consensus opinion" was that he was 50% better. Now, at 13 weeks post PEX he is reliably 65% better on his worst day - that means even more on those "good days." His doctor is very happy and says that the PEX will continue to work on his brain and heal it for up to 6 months. That is a lot more time for improvement! I'll add this bit just as an FYI: We began to suspect that another infectious process might also be at play in our son's situation when his post PEX progress sort of "slowed" at the 60% to 65% mark. I was following up, after PEX, with a Physician's Assistant (and licensed naturopath) who sees a lot of the PANDAS patients from the practice that is currently treating our son's PANDAS. I went to her to deal with the "yeast issue" as he would be on long term antibiotics. Thanks to all the hard work of many parents on this forum I also decided to look into the Lyme issue... I am so glad that we had him tested because it turns out that he has Lyme and Bartonella. In treating these infections his post PEX progress is starting to "speed up" again! I am very hopeful about his prognosis. I have not posted about it yet on this forum because I want to be really sure this is happening. If treating both PANDAS and Lyme in combination works I will post the whole story - for now I just watch, learn, and pray - a lot!

AS IF the "learning curve" weren't steep enough with PANDAS now we have newly diagnosed chronic neurologic Lyme! Also, one of the coinfections: Bartonella. (Two summers ago, we thought the "red stretch marks on his lower back/hip area" were caused by a growth spurt! I just feel sick about this when I think back...) So, in addition to his three times daily dose of Augmentin XR 1,000 mg for PANDAS (he is 165lbs and now 3 months post PEX) we have begun three times daily Doxycycline 100mg. We started last Thursday and he had a significant Herxheimer (sp?) reaction. Increased red rash on face and neck, increased anxiety/agitation, the "red stretch marks" on his hips are now all over his pelvic region - back and front, increased involuntary movements, increased OCD (checking, trouble going through doors). Granted, the involuntary movements and OCD are no way near the levels he was at just prior to his plasmaphresis last July. BUT, any increase in these "PANDAS symptoms" are cause for aggressive intervention as that only gets worse to the point of no control. Here is what I did: I called our PA (also a naturopath) who is treating the Lyme and told her I was very concerned about his response to the Doxycycline. She said it was most likely a sign that the Lyme was being treated but told us to come in for a Bicillin shot. She uses these to treat Lyme too. We are now 24 hours after the shot and he is 75% less anxious, with more relaxed body movements, and minimal OCD. The shot helped!! I am way too new at this to reliably articulate why this helped. But, we can get these shots once a month (even every week if needed) and I am glad to see that it is working. Then, yesterday, we (purely by chance) had an appointment with his PANDAS doctor. She is o.k. with the Augmentin/Doxy/Bicillin treatment plan. That helps. What else should I be thinking about at this point in the treatment process? We are treating high Candida levels with Difulcain, medical grade probiotics (VSL 3 DS), Theralac, and TruFiber. We are treating his gut with the GFCF diet (based on food allergy testing). I am told this will help his immune system too. He was started on Valtrex at the end of September for a high EB titer. However, as that can cause anxiety/agitation and/or aggressiveness and/or depression and/or dizzyness (and those are just the neruo-psych side effects), we have stopped that as of two days ago. He got most of the 30 days that are needed (at minimum) for EB. We were going to also start a week of Tindamax followed by 21 days off then Flagyl for 7 days but his Herxheimer reaction was so strong (on Doxy alone) that we have put that on "hold" for a little while. I believe we will do this at the right time however (just not sure what the "right time" will look like). How long does a Herxheimer reaction last? I think this Lyme must be pretty bad - not to mention the Bartonella. I have heard that Bartonella is really bad for the nervous system. Does anyone else on the forum have experience with this particular coinfection? I really appreciate all that I have already learned from both the PANDAS/PITAND and the Lyme Forums. Any new input would be "golden."

All I know (from 20/20 hindsight) is that my ds14 was "brewing" mild - moderate PANDAS (we were unaware of it)when we got him the "highly coveted H1N1 vaccine." He had an obvious reaction (bright red rash on cheeks, cloudy thinking, mental dullness, bad headache... all within 24 hours) I regret getting him the vaccine. Would the actual H1N1 flu have been worse? I'll never know - but his response to the vaccine was not good at all. This year we are post-PEX - that means no vaccines for a year. Then we will have to labor though some tough choices. I really do not want to tell you what choice to make. But, I would feel badly if I did not share our experience with you. All the best with your decision.

kimw, Can you call the doctor back and "suggest"/ask for augmentin instead of penicillin?

kimw, I am so sorry that you and your son have to go through this. Your story has some similar features to that of my son (who is now 14). In his case, tonsils were reinfecting his sinuses over and over. He basically had one long sinus infection treated with multiple antibiotics over 18 months. His tics were only better when on antibiotics (Augmentin, alternating with Cipro, alternating with Cefuroxime, with long "breaks" in between). Finally, after 18 months (and one pediatric neurologist who said it can't be PANDAS because his strep titer - the ASO - were negative) my son's condition exploded into catastrophic PANDAS. We live in the D.C. area and were able to get to Dr. L. who eventually admitted him to Georgetown Hospital for plasmapheresis. It is the only thing that has turned this illness around. We tried long term antibiotics, steroids x one month, tonsillectomy, IVIG, and then plasmapheresis. I am writing this to you to encourage you to work as hard as you can to help your son access plasmapheresis. It will not be easy - it wasn't for us. But, the struggle is worth it. If you would like more information about the Dr. we see and how she helped our son you may send me a personal message. I wish you all the best. You are fighting hard for your son and he is very fortunate to have you in his corner!

SF Mom your posts have helped me in many unexpected ways. Thank you! We did check into Lyme Babesia, Bartonella (Igenex), Mycoplasma, EB virus, yeast, and other issues because of things that you and a few other parents have posted. We are so grateful - our ds14 with PANDAS tested positive for EB virus and Mycoplasma and he has a lot of symptoms of Babesia (so we can suspect Lyme all the more). We are anxiously waiting for our Igenex results. Where would we be without this valuable information? Probably very frustrated that the PEX our ds14 had this past summer was not more effective. He was at 60% improved 8 weeks post PEX when we started Valutrex a few days ago for the EB. SUDDENLY, he has had a burst of improvement - much of it in the areas of his communication and interaction with the family, and his cognitive function. His eyes look "brighter" to me too. I think much of the 40% improvement we were missing post PEX will be gained as we move forward and treat these additional infectious issues. Our son would not have this chance without the information I learned from SF Mom and others who advocate for a deeper look into all possible sources of assault on the immune system. Thank you SF mom!

Yes, this specialization is a blessing and a curse. PANDAS has, for the most part, a psychiatric presentation, an immunologic cause, and a neurologic treatment (if PEX is considered the definitive treatment). These components set up psychiatrists to fail as they insist on using what they know. It also results in fragmented care between the immunologists and the neurologists who have different skill sets and offer different treatment options (IVIG and PEX). The most disadvantaged in this scenario are the pediatricians who see the symptoms but have no final voice when it comes to the diagnosis and only a limited range of treatment options. Even the long term antibiotic treatment option puts the pediatrician at risk of criticism from peers. Until PANDAS becomes an "officially recognized" diagnosis (and perhaps with a name that is not associated with controversy) this is the mess we must wade through to find help for our kids. Awful.

A lot of painful issues have been spoken of in this thread. There is clearly a battle going on within the medical community that is way bigger than any of us. Yet, our sick children are counting on us to march into the fray and "secure a cure." So, after every skirmish, unexpected ambush, and battle, each worn out "parent-soldier" returns to their "camp" and posts their latest findings on this forum. I have found help on this forum from some of the most unexpected posts. I have learned about things I never knew mattered - and it has helped my son enormously. It is the willingness of the parents on this forum to share what helps that makes it a reliable source of support. When it comes to new or complicated illnesses sometimes doctors take a stand that is political not medical. Other times both doctors and nurses fall back on scientific platitude to "excuse themselves" from cases that they are unable to handle. Sometimes good medical care is set as policy by a group in order to insulate any one physician from legal liability. Sometimes the insurance industry drives and defines care. Research dollars can also define the limits of care. At the NIH meeting last June, one doctor stood up and told everyone there, "Define this disease as narrowly as you want to in your research studies but not here in this white paper. Insurance companies will use the guidelines we set here to determine which claims will be paid and which will be denied." This is the fight. This battle is out of our reach and that is terrifying because we are all effected by the eventual outcome. The best thing we can do is share what we know that might help another parent. There is always something we can do for our PANDAS kids. We are the PANDAS brigade.

My ds14 has never had a documented positive strep titer (although we only did the ASO unfortunately). Also, he has never had a positive throat culture. His presumed strep exposure probably occurred years before he finally "exploded" with PANDAS last January. I think other infections helped to further the development of PANDAS as well (mycoplasma and EV virus titers were positive). His Cunningham labs came back clearly positive for PANDAS. Don't be deterred by the negative titer! We lost 18 valuable months of treatment to a pediatric neurologist who said he did not know much about PANDAS but our son could not possibly have it because his ASO was negative. So sad...

For me, swabbing is an incomplete assessment tool for rooting out organisms of any kind. If the swab does not hit "the right spot" you could miss the infection. It is very dependent on the clinician taking the swab. But, even more worrisome, organisms like strep and myco settle into spaces in the respiratory tree and other ENT areas that cannot be reached by a swab. And, as mentioned in many places on this forum some strep (and other organisms such as myco) hide in the cells themselves thus eluding swabs. For these reasons I like to follow blood titers and clinical symptoms. There is a place for throat swabs and that is for active full blown strep throat. But, even with tonsillitis caused by strep the swab can come back negative (I speak about this from sad personal experience with our PANDAS son). Just another bit of info. for you to consider... Hope it is helpful.

I hope you do publish your story and include: diary, family history, current PANDAS knowledge, and insight... when you are able (as Tenacity said earlier). Also, there are a lot of posts about Rheumatic Fever here. I had Rheumatic Fever when I was 6 years old. I remember it was early springtime. I spent a month in the hospital and missed 60 days of first grade. Oddly, I also had a huge problem with unexplained fits of screaming, crying, and rage during the summer after first grade. I remember feeling overwhelmed by it all and desperate for someone to help me. My parents first tried to "correct" my behavior by ignoring these "fits." Later, they resorted to beating me - sadly. They finally "broke" me of the rages but, unintentionally, they broke my spirit too. I will never allow this to happen to my son with PANDAS. Thanks to everyone who bravely posted their painful PANDAS memories on this thread.

I could barely breath while reading this. You are golden to share this with the forum. This is a priceless description from the inside out of PANDAS. Priceless. It validates what we see in our children. It stands as proof, to me, that this illness is real and has been ignored for way too long. How incredibly sad that you had to go through all of that alone. And, how amazing that you survived - even thrived. How did it just all go away? I have so much respect for your story.

An awesome and encouraging story! Lifts my spirits today - thanks!

O.K. I see here that a compounding pharmacy mixes it up - but where did you find a doc to prescribe it?

Stephanie, Would you be willing to share where, and how, you get the LDN? I have been looking into it lately but have not had any luck finding a physician/source. Thanks! P.S. I've already tried the Lowdosenaltrexone website and did not get any leads for doctors

Interesting treatment. Long-term steroids would not be my choice. So good to hear that she was cured!! Thank you for sharing this. Interesting that it took 2 years - similar to PANDAS. Yes, 2 years is a long time to heal. But, I think she "felt better" much sooner. It was less obvious that she was sick once the steroids were weaned off. Also, I did not even know that she spent a year on IVIG treatments until much later. It is nice to see a happy ending to her story. She is a beautiful young lady now... Let's hope for the same for our children!

If it is solumedrol it is a steroid.

Our neighbor's daughter had this! After one year of steroids followed by another year of monthly IVIG (I presume because the steroids did not work for her) I have heard that her doctors have pronounced her "cured." It is a rare autoimmune disease - but treatable (and gets better recognition than PANDAS). Good Luck!

Allison, I can relate to your question about the boundary line between "self" and "disorder." I have a teen with PANDAS and he is quite angry about the way it has turned his life upside down. He can be very difficult to "reason with" or motivate in ways that we never expected (he has an older brother and we got through his adolescent "stuff" no worse for the wear). I would say PANDAS + adolescence = a very rough time for parents and kids. Emmalily, thank you for a description of your experience that better helps me to help my son. Also Allison, With a Camkinase of @ 200 if there is any way that you can access a PANDAS doc I would really encourage you to do so. There are no substitutes in medicine for PANDAS kids right now. All the best to you...

I will definitely pray for your daughter. I am so sorry that that this is happening. Please let us know how it works out...

Thanks to everyone for your quick replies! Each post was helpful in a different way: "Fixit" you are right about "all the time, research, crying, worrying, distress, and money..." "Norcal mom" that was exactly what my husband said when I called him this afternoon! "Mati's mom" I loved how you would try to keep a teacher who understood the situation. "Vickie" YES! This IS stressful!!! "dcmom" Thanks for understanding - even when you chose differently for your two girls. BTW, your story is the best example of why I believe it is so important to be aggressive with the younger PANDAS kids. They seem to "bounce back" quicker. I often talk with another PANDAS mom of a 14 y/o who is post PEX and also healing very slowly. Neither of our kids are functionally able to go to school right now anyway! But, they are slowly getting there... The last thing in the world any PANDAS parent wants to see is a "relapse." After I talked to my husband I also talked with the school counselor. She surprised me by saying that we absolutely need to change teachers. Her words were: "You need someone who can be reliably, reasonably, well." I am going to call our teacher first and finish the conversation we started today. I half wonder if she won't be relieved by this decision too. She was very eager to learn about PANDAS - so our contact will not be wasted however. In fact, her husband said he thought she was assigned to our family "for a reason and that was to learn about this disorder for their child." I did share this forum and some medical literature with her. I will follow Vickie's advice and mention about "parent carriers." Thanks again everyone for helping me out with such a stressful situation! I will let you know how we work things out. Gratefully, RNmom

We love our son's home bound teachers. DS14 is now 6 weeks post PEX. He is just starting to show improvement. We have made the somewhat "radical" choice to keep him 100% home bound for three months post -PEX until his immune system rebuilds itself. Of all things, one of ds14's home bound teachers has 3 young children - 2 of them are back in school - and today one is sick with a fever and runny nose... (AND, BTW, another child is being worked up for PANDAS: tics with strep infection last spring. But they are currently with the same doc who could not diagnose our ds14 PANDAS 2 years ago...) Here is my question: There is a potential for untreated strep in this sweet young family. There is certainly an illness going on in it now. This teacher canceled today's visit (very thoughtful) but mentioned that they do not go to the doctor right away for things and that she was going to "wait and see" how her child's illness progressed. I remember making a joke last summer to a member of our family (who is a physician) that "there is such thing as routine illness in our family." Since PEX no one has gotten into our house with so much as a "slight sniffle." This home bound teacher very thoughtfully suggested we talk about this issue. I am grateful to her. Now, how do I proceed? Let her come to our house as long as she feels fine? Require that her kids be well too? Make her get strep tests on her sick kids?? It is awkward as she did share that they do not go to the doctor right away for illnesses. I get the impression they give a lot of time with illnesses for "things to work themselves out." (BTW, if they do have a child with PANDAS that approach has some implications...) I did give this teacher some medical articles and good internet sites about PANDAS. Also, our current docs info... She wants to learn more for her possible PANDAS child. How do I balance all these needs, keep my son's needs first (which includes protecting his health and his education), and be helpful to this mom? Do I nip this potential problem in the bud and ask for another homebound teacher? I know this one would understand. (She said that she does not want to create problems.) I have to talk with her and make a decision fast. Input from this forum would help me think things through. No pressure on anyone to be "responsible" for my final choice - I just truly need to "talk this through...." Thanks in advance to anyone who might respond :-)