LNN

HUGE urinary issues for us post-ivig. DS hadn't had any daytime issues in over a year. Post-ivig, he was constantly having to go, for about 8 weeks. Also washed sheets ALOT, even with using a pullup. His body just seemed to be producing huge amounts of fluid 24 hours a day. It is only now just starting to wane, along with other things. He was 2 weeks into an exacerbation when we did IVIG, now we're 9 weeks post. So it's been a very long, tiring 3 months for the whole family. 4 days ago, he finally started to turn the corner and we're seeing definite upswing all around. No laundry yesterday! What was really hard is that this was probably the longest episode in a very long time. I expected things to get worse before better, but I wasn't emotionally prepared for such a marathon. We got a 504 at the end of the school year in May. I don't have experience with middle schoolers yet. I guess I'd initially respect his request that you keep his confidences and not tell the teacher about things right off the bat. I'd monitor his homework and behavior and give it at least a few weeks to see where you're at. But as much as you don't want his disease to make him feel singled out, my recollection is that ALL middle schoolers feel there is something that makes them horribly different from the herd. A zit, 5 extra pounds, a bad hair day...so keeping his disease a secret may be understandable but not wise in the long run. You can keep it secret only to have him obsess over some other perceived flaw. I'd lay low for a time - as you yourself said, school is not your top priority this year, but you'll both have to strike a balance.

I PMd you our letter. Good luck!

Igenex told me we only had to wait 4 weeks post-ivig when I called. But you may want to call them directly to confirm. We are almost 9 weeks post-ivig and doing the test today (hopefully). Call them and ask about your own specifics. That way you'll know for sure without necessarily spending the money for a re-test.

Obviously, tests make it much easier to make a medical treatment plan. But since that sounds like it's not in the budget, as a quick relief you can look into inositol as a natural SSRI. a. http://en.wikipedia.org/wiki/Inositol b. http://www.nutritionj.com/content/7/1/2 c. http://www.naturaladd.com/resources/articles/natural.html d. http://westsuffolkpsych.homestead.com/inositol_and_ocd.html e. http://findarticles.com/p/articles/mi_m0ISW/is_255/ai_n6211958/ f. http://www.ihealthtree.com/inositol-powder-8-oz-source-naturals.html It helped us through the worst of times, but I would look into CBT and ERP as a longer term, more permanent solution when you finally get to a point where simply functioning is less of an ordeal. Best of luck!

I agree with your feelings but I'm sure that doesn't make you feel better. I second Meg's Mom - take the pcn vk if it's all you can get. But if you're up for the fight, argue that it may be the clavulanic acid that is playing a part in your recovery. In the "do no harm" doctor's creed, it seems that augmentin is potentially far less harmful than going back to only penicillin. But I'm sure you've been there done that. If it's any consolation, I don't think any of the Pandas docs would have a problem keeping your son on augmentin. So worst case, help is a few weeks away (small comfort right now, I know). I once recommended that a parent run their child thru poison ivy to get prednisone (half kidding). It's a thought... My link this article explains how some antibiotics do more for the brain than just keep infection away. It probably won't help, since your doctor has his/her mind made up, but since you may be looking for a new pediatrician shortly anyway, maybe go out will all guns blasting... Hang in there. Have hope.

We've had great success using CBT to manage rages/moods. It wasn't overnight, it took months of work (maturing helped too). But now, he catches his temper almost immediately and uses words, or an appropriate walk away for a few minutes. The change has been dramatic. Re: antibiotics - in my son's experience, the antibiotics didn't play a role in ending symptoms (which seems to last 6-7 weeks if not ended sooner with prednisone). They ended the infection, they keep new infections away. But once the Pandas symptoms started, it took prednisone to end the episode, or simply time (6-7 weeks). Others may have a different experience. Re: your upcoming appt - track things, take your top 5 symptoms and give them a numeric value every day (e.g. OCD was a 5 today, rages were a 7). Do this for the next month and then turn it into an excel chart that you can show Dr L. It's a quick way to convey a lot if information. If appropriate, take a video or bring samples of school work. The more concise you can be with words and the more specific you can be with examples, the more you'll get out of your appointment. Finally, ditto EAMom's suggestion on advil - but for us, dosing had to be consistent, every 6 hours. Only doing it after things got rough didn't make nearly the same dent in symptoms. But do be careful - long term, it's bad for the liver.

I too have mixed emotions about seeing Lyme split out. Yes, it can dominate the conversation on the Pandas board, but in Vickie's poll, abut 1/3 of the Pandas kids have Lyme and more are considering being tested. If it weren't for the recent dominance of the topic, there's a much higher chance of kids becoming "non-responders" simply because the wrong bacterial infection was being targeted. It took six months of hearing the drum beat before I started to reconsider Lyme for my situation (which is still TBD). I personally have enjoyed having both conversations on one board. I can always chose to skip particular topics. I think things like ERP, diet, school issues - are all common to the larger umbrella of infection-triggered neuropsych illnesses. If there are two boards, then having a way to stay current with a mouse click would be very helpful. I really appreciate ACNs willingness to support conversations and knowledge sharing in the best way possible, regardless of whether it stays one or becomes two boards. Thanks, Shelia!

I came across this while researching glutamate http://www.ninds.nih.gov/news_and_events/news_articles/news_article_ALS_ceftriaxone.htm What's Old is New Again - Antibiotic Protects Nerves By Removing Excess Glutamate For release: Monday, February 07, 2005 A new study shows that a common antibiotic used to treat bacterial infections increases survival rates and delays nerve damage in a mouse model for amyotrophic lateral sclerosis (ALS). The antibiotic works by activating or "turning on" the gene encoding the glutamate transporter in neurons. This finding may lead to new drug treatments for ALS and other neurodegenerative diseases. Jeffrey Rothstein, M.D., Ph.D., director of the Robert Packard Center for ALS Research at Johns Hopkins University in Baltimore, Maryland , and his colleagues reported the beneficial effects of the antibiotic ceftriaxone in a mouse animal model of ALS in the January 6, 2005, issue of Nature.* Ceftriaxone treatment, started at the onset of the disease in the mouse model, delayed the loss of neurons and muscle strength while increasing survival time. The study was funded in part by the National Institute of Neurological Disorders and Stroke (NINDS). The initial focus on antibiotics for ALS resulted from the NINDS-led Drug Screening Consortium, an effort in which 27 investigators, including Dr. Rothstein, screened 1040 existing drugs to assess their potential to treat a variety of neurodegenerative disorders. Co-sponsored by The ALS Association and two Huntington's disease groups, the purpose of this cooperative drug screening approach was to use rapid technology to find new uses for existing drugs. Ceftriaxone was one of the drugs that showed promise for ‘crossing-over' into neurodegenerative diseases. The potentially therapeutic properties of ceftriaxone for ALS have little to do with its antibiotic effects but instead result from its ability to increase the number of glutamate transporters. Glutamate transporters are proteins that vacuum up the excitatory neurotransmitter glutamate. Normally, glutamate acts to excite nerves so that electrical signals can travel from one to the next. Too much glutamate has a toxic effect on nerve cells and has been implicated in neurodegenerative diseases such as ALS, Huntington's disease, Alzheimer's disease, epilepsy and stroke. Removing glutamate through the transporter prevents nerve damage caused by excessive amounts of glutamate. "Increasing the glutamate transporter expression and removing the excess glutamate is essentially like turning on a fan to clear a smoke-filled room," says Dr. Rothstein. As part of the Drug Screening Consortium, Dr. Rothstein found that 15 drugs from the penicillin family, named beta lactams, increased glutamate transport in cultures of spinal cord slices and therefore increased removal of this excitatory neurotransmitter. Because this class of antibiotics can increase removal of excess glutamate, researchers hypothesized this could lead to better drug treatment therapies for neurodegenerative disorders like ALS. "We're very excited by these drugs' abilities," says Dr. Rothstein. "These studies show for the first time that drugs, not just genetic engineering, can increase the numbers of specific transporters in brain cells. Because we study ALS, we tested the drugs in a mouse model of that disease, but this approach could be valuable to other conditions. It has potential applications in numerous neurologic and psychiatric conditions that arise from abnormal control of glutamate." As a result of these recent findings, the NINDS will fund a multi-center clinical trial in ALS patients that is slated to start in spring 2005. The placebo-controlled clinical trial will determine the safety and efficacy of long-term ceftriaxone treatment in patients with ALS. "The discovery of new uses for antibiotics in ALS validates the drug screening approach as a rapid and effective method of finding new uses for existing drugs," says Jill Heemskerk, Ph.D., NINDS' program director for the screening program. "There are currently no effective drugs for these diseases, and the study of compounds identified by this approach will provide desperately needed inroads into this uncharted territory," added Dr. Heemskerk. ALS and other neurodegenerative diseases are currently poorly understood, lack successful treatments and cause progressive disability in affected patients. Dr. Rothstein and others in the field believe that having the ability to selectively target the glutamate transporter will be a powerful tool not only for treating neurodegenerative diseases but also for developing an important new class of drugs. Since long-term antibiotic treatment could lead to antibiotic resistance or toxic side-effects, researchers are working to develop novel, less toxic drugs that are more selective in removing excess levels of glutamate. Future research will also test other beta-lactam antibiotics that may be more effective. If successful, these drugs will shed new light on treatments for neurodegenerative disorders and help to prevent nerve damage and death in patients. The NINDS is a component of the National Institutes of Health within the Department of Health and Human Services and is the nation's primary supporter of biomedical research on the brain and nervous system. References: *Rothstein JD, Patel S, Regan MR, Haenggel C, Huang YH, Bergles DE, Jin L, Dykes Hoberg M, Vidensky S, Chung DS, Vang Toan S, Bruijn LI, Su Z-Z, Gupta P, Fisher PB. "b-Lactam antibiotics offer neuroprotection by increasing glutamate transporter expression." Nature, January 6, 2005, Vol. 433, pp.73-77. **Miller TM, Cleveland DW. "Treating neurodegenerative disease with antibiotics." Science, January 21, 2005, Vol. 307, pp. 361-362. By Michelle D. Jones-London, Ph.D.

We're 8 weeks post-ivig today. He was subdued the first week, hyper/manic the second. Weeks 3-5 got way worse. Weeks 6-8 things are back to about where they were the day before IVIG. It's discouraging, isn't it? He responds phenomenally to prednisone (and also had positive results from pex, we just couldn't keep him away from exposure), so we had high hopes for IVIG. I suppose it's possible it could have benefits in the long run. It just wasn't what we expected so far. On the plus sign, OCD is sub-clinical. But it was low beforehand, got worse during the post-treatment ramp up, and is now back to about where it was when this episode started. The muscle pain went away for 4 weeks post-ivig, which was great, but it's back. The mania, mood lability and worst of all, the brain fog, aren't improving. The interesting thing is that everything significantly improves within an hour of 200mg of motrin. So we know whatever is going on is inflammation based. Would lyme respond this way? We're not in your shoes. My son is functioning and interacting with peers and will start school in 3 weeks. We have very little anxiety. It's the brain fog that's our biggie. We see our Pandas doc in 2 weeks. At that time, I'll hopefully get sign off on the Igenex paperwork to test for Lyme (but will not be going off abx). The trouble is DS has high C3d immune complexes, which may give a false negative, so the test results may not be reliable. I also hope to discuss a switch from Augmentin 800mg to XR. A long way to say you're not alone. Something is causing continued inflammation. Now I just have to figure out what. Hang in there. I often feel that the trial and errors of this group are moving medical knowledge along, in a clunky way, as fast as researchers and doctors are. This is more than one of those "I'm so sorry let me give you a hug" support groups (not knocking those comments - please don't misunderstand). But this group is empowering. It's like we're all detectives, sharing clues. One sees the elephant's tail, another sees the trunk. Together, we'll get the elephant out of the room. It just isn't easy. This disease isn't for sissys, that's for sure.

Just want to point out that there is a significant difference between an IEP and a 504 Plan. We were denied a 504 when we requested one but had not yet rec'd an "official" diagnosis. We got one after we presented a letter from our Pandas doc with the diagnosis, stating my son should be given accommodations similar to those given to kids who have OCD, tics, ADHD etc. But our school made it clear this was not special ed and did not give us the same things as an IEP. So be clear on what you want. In our case, for now, we're looking for things like lighter homework load, being able to answer questions orally when possible, being able to call home when he asks..Not sure if it will be enough as he heads into higher grades. But one step at a time.

During his first "official" episode, he ticced for 3 days (a week after his first strep throat) then it went away (tho the severe anxiety did not). Later, they became one of our dominant issues. He even started "freezing" like a statute. So then every time tics flaired, I was petrified. We finally did pex - plasmapheresis - last August. And that helped immensely. Plasmapheresis is a kind of blood dialysis that removes the auto-antibodies thought to be causing the Pandas exacerbation. Until this weekend, I was under the impression that you could only get pex from Georgetown Univ Hospital in DC, but someone else posted this weekend about a second place it may be available. It requires 3 days in the Pediatric ICU and is quite expensive if not covered by insurance. But in the spirit of full disclosure, you will notice that I'm still on this forum, still fighting Pandas. So while pex helped a great deal and I have no regrets, it was not a cure. More like a very beneficial treatment.

Our personal experience is that tics were very hard to eliminate. My son was on daily abx and did a 4 week prednisone taper and tics remained (reduced, but enough to break my heart). Then we did a T&A, which eliminated the source of chronic infection. It was only then that tics started to subside (but over months - it wasn't instant). Finally, we did pex, and after a few weeks, the tics were finally gone. So part of my message is to not get your hopes so high that you tie yourself up in knots when they don't subside quickly. It may take months and possibly more aggressive treatments. The other part of my message is to not give up hope. What you see today is not something you have to resign yourself to seeing 6 months from now. I know that feels like a lifetime, especially as the start of school looms on the horizon. Tics provide a constant, in-your-face reminder that something is wrong. But in our experience, the damage isn't permanent. Try your best to not despair. This is a marathon toward good health, not a sprint.

can you get to a minute clinic at CVS or other walk-in clinic? I've had good luck there, especially if I look like I'm at wits end. They may consider Dr K's note sufficient CYA. Good luck!

Please tell your son he's an inspiration. I can't imagine how hard this is for both of you, but wish you so much strength and success.

We used to have big time rages. CBT was extremely helpful. My son was 6 when this first started, so we gave his rage a name - Edgar the Angry, When Edgar showed up, we addressed Edgar and told him to let DS go, almost the way the priest "commands" the demon in The Exorcist. It seemed to make my son relax, knowing we weren't mad at him, just at the emotion, and it let him know we were his allies, trying to help him get rid of the demon. Once we all got on the same page, we moved on to helping my son realize he was in control of Edgar. Edgar might be responsible for the rage, but my son was responsible for Edgar's words and actions. Just like as a dog owner, I'm responsible if my dog bites someone, even tho I didn't do the biting. Depersonalizing, using CBT techniques, and maturity all helped, as did the proper medical care. But Pandas is best treated with both CBT/ERP therapy and medical. So I'd recommend both.

Holy cow! How the heck do you get that much into them? I'm shooting for 20B-40B with 2-3 capsules and hoping DS doesn't balk. What's your secret?

Kim, Can you share your experiences with Diflucan? Do you use it prophylacticallY? I don't want to hijack this thread, so please feel free to PM me. I tried to PM you but got a message saying you couldn't receive messages. Laura

I think many of us would completely agree with this and you are not on an uninhabited island - more like Nassau, The Bahamas. Lots of conversations in the archives about the anti-inflammatory qualities of abx, IVIG, etc. I don't think this applies only to Pandas kids with eating restrictions. I think this is true for all Pandas kids. However, we have personally had Pandas go into remission with a 4 week prednisone taper because I believe any triggering infection or exposure was gone and the prednisone was sufficiently long to halt the inflammatory effects. The book Cure Unknown also discusses a hypothesis that some Alzheimer's patients may have Lyme, so in that case, an antibiotic may be treating an infection as well as providing anti-inflammatory relief. I'm with you on the desire to lower the dose of "prophylactic" abx we're on, but not as comfortable using one that isn't a good strep fighter and since getting to a Pandas doc is not a short trip around the corner, getting rapid and aggressive antibiotics at the first sign of trouble would be a nerve-racking proposition for me. Not sure about your daughter, but my kids have impeccable timing and always get sick at 5:05 pm on a Friday or 12:05 on a Saturday after the doctor's office has closed for the weekend. Further complicating things is that my son is a "canary" and reacts to exposure to strep, not just infection. Having him periodically checked would mean nothing. I hate having him on high dose abx long term. But having Linda Blair move back into the house is not something I would ever want to risk again. I'm with you completely on this one. I've in the middle of reading a book on yeast infections and it's symptoms (I have a son -it's not so easy to detect). The symptoms include brain fog, adhd, moodiness, irritability, stomach complaints...things that are part of the Pandas symptom list and the Lyme symptom list. So who the heck knows. But after a year on abx, it's a good chance my son has rampant yeast overgrowth. Maybe diflucan should be part of the same prophylactic regimen. Maybe the reason so many forum members talk about improvements on a GF diet isn't due to a gluten intolerance but rather a benefit of starving the yeast. Yeast overgrowth also causes big time inflammation of the GI tract, leaky gut, and...elevated C3 complexes (something both of my kids have, including the non-Pandas one who has GI issues). Likewise, both prednisone and Motrin bring us great relief from Pandas - another clue supporting the "inflammation is evil" theory. Unfortunately, both have nasty effects long term. Even Diflucan can take a toll on the liver. So I think yes, we need to be adding anti-inflammatories into the mix, something that is likely to get more mainstream support (and a whole lot more affordable than IVIG or pex). But I've yet to find something that has huge upside for little downside. But I think immune-modulating also needs to be a factor. And I'm not ready to abandon the safety net of antibiotics - the downside is, for my family, far too great until we find a reliable alternative. But great conversation starter... Laura

No - don't give kids the adult version. Salicylate is the ingredient in asprin that can cause Rye Syndrome and is why you can't give kids regular asprin. Only use the children's.

Emerson, PANDAS is closely related to Sydenham's Chorea, which is a subset of Rheumatic Fever - a cause of serious heart damage. PANDAS is not thought to cause heart damage (my son had a full cardio work up last year and was fine). But you should definitely mention it to the doctor on the 18th. You need to rule out RF/SC. If you're diagnosed with RF, you'll usually be put on daily antibiotics into your 20s.

We're going to see one of our Pandas docs in 3 weeks. Will be asking about various meds/supplements (pls. remind DH he owes me some Alzheimer articles). We're also having problems with impulse control, mania, age regression and that #@$&*! brain fog. So the urinary frequency is the least of his problems. DS will be 8 in a month and he's only lost 3 teeth - all three fell out about a month after pex last August. Nothing has gotten loose since. I have to wonder if something isn't delaying his overall development. Glutamate keeps coming to mind, but I don't know what, if anything, can be done about that.

Hurray Emerson!!! I'll be counting down with you... EA Mom - good point. My daughter (5) (Pandas?) is going to a GI doc in 2 weeks because her erratic eating has finally gotten to the point that DH has agreed to an endoscope if need be. She frequently complains of reflux and heartburn and won't eat, saying she isn't hungry. But we're starting to find out she's avoiding foods that she fears may not feel good if they come back up (things with texture). She'll eat cereal, soup, ice cream, milk - smooth things. For her, it isn't an imaginary fear of choking - it's a fear of something that happens to her for real - reflux. She even told us that she often swallows throw up and that "you get used to it". That she has a weird taste in her mouth (metalic? vomit?). Am anxiously waiting for the appt. I will not mention Pandas. That's not what we're going there for. But I wouldn't be surprised to find there's a gut issue that sometimes causes a BBB problem that triggers her periodic OCD, particularly in the winter. Do you ever get the sense that we all see the tip of the ice berg, and one day 50 years from now, someone will read these archives and chuckle at our naivete and ignorance of what will then be common medical knowledge?

Ok, so my son clearly does not read the script on any Pandas treatments. Unlike most kids, he got worse immediately following pex (not all day every day, but it was like "flipping pages") and then got better around week 3. Post-IVIG, urinary frequency is driving him nuts and has been for 6 weeks now. We haven't seen this symptom in about 18 months and it wasn't a problem in the weeks leading up to IVIG when he was in exacerbation. Thank God he at least responds as expected to motrin and prednisone. Maybe someone can make me a tape recording of what he's "supposed" to do and I can slip it under his pillow at night (can't be in my voice - I think he knows how to tune that out )

Wornoutmom, I'm so sorry - your family shouldn't have to be dealing with this. I too had a low point this week (we are 7 weeks post-ivig). Lots of kleenex were sacrificed. But after bottoming out, I did an experiment. We've been dosing 3x day with Motrin for about 4 weeks now. Whenever we try to skip a dose, we can tell a difference almost to the hour of when the next dose was due. Earlier this week, DS couldn't do simple addition (math has always been his strength, even in bad pandas episodes). He took a Motrin and an hour later, flew through the same math problems. He looked at me like "this is crazy". So I know that whatever is at the root of our problem is inflammation based. I agree with the others who feel you should do Igenex when enough time has passed. But yesterday I started reading a book on yeast and the many of the neuropsych symptoms we're still dealing with show up on a list in Chapter 1. DS takes probiotics, but he does have loose stools probably once a week and perhaps yeast is the problem that's masking any improvements IVIG may have made. It may be a stretch, or it may be the very thing that's wrong. I completely feel your discouragement - this big gun was supposed to make things better and now you and your son are wickedly disappointed and discouraged. School looms and the nightmare just never seems to end. But please know the answers are out there. We are bleeding edge guinea pigs, but we also need to be stubborn, tenacious mules. There are many things that could be at play. Try to step back and ask yourself what clues you haven't yet pursued. Lyme, yeast, co-infection...I'd hold off on prednisone until you had an answer on Lyme. Try the Motrin on a regular, consistent schedule for a week to see if you notice a difference - often when we dose sporadically, we don't see much change. But now that we're consistent, we do. Try upping the probiotics or adding in other strains. But get some sleep and then see if you can put your Sherlock Holmes hat back on and come back slugging. We're all here for you.

If your child has high C3D compounding, I've read that can cause a false negative. Can you shed any light?