T_Mom

Hi MichiganPs, Yes, absolutely our d came back to "normal" or "baseline" as it is sometimes referred to-- Three years ago, our older d had a very severe OCD sudden onset episode and once we settled on giving her continual antibiotics (and with her Amoxicillan, at "full-strength" as if she had strep) worked--We saw obvious improvements within 48 hours initially (more then once that first year--as we first gave only 10 days worth, each time she got ill and started having Ps symptoms.) Finally figured out that if we kept her on it for an extended period of time that she got better and better--So she was on: Amoxicillan and 1000mg of each of these: vit. C, D, Omega 3 EPA to DHA ratio of about 4 to 1, so more EPA--from Nordic Naturals, eventually changed to Flaxseed Oil w/ about the same amount of EPA as she had some ticcing that seemed to worsen w/ fish oil omegas. After 7 months of fairly steady and obvious healing/improvement on this regime she began to plateau. After 2 months of no obvious improvement we tried a steroid burst for 3 weeks, and she literally bounced back to 110%. It was a remarkable effect. She was then GREAT for over a year, good grades, NO OCD, no ticcing, etc. Until last summer when she was exposed to strep--and flaired. (I was, at the same time, trying to cut back on her Amoxicillan.) She had a moderate episode and she was treated again with a steroid burst which helped rid her of the obvious OCD, though intrusive thoughts remained. They have continued to diminish to about 96% "OK"... I hope this helps--If it is Pandas I do believe they can be treated and make a full recovery. You may need to work on "habits" or learned responses, but the physical causes, I still think, can be treated successfully. ps--we just had IVIG for our younger d, for her the steroid bursts were not effective. It appears that she is doing better--saw-tooth, but better.

Dedee--I am so sorry and I believe I understand. This year has been a living nightmare for our younger d (11) --uncharacteristic sudden onset OCD that morphed into raging, ODD for the past 6 months--it has been unbelieveable. Horrible scenes, I understand that you are both afraid and fearful for her, as well as the family. (I hid all knives/scissors, removed breakables after numerous things were destroyed.) If I we had to live this year over again, (and if I had decided on IVIG as the next step) I would have done it 6 months ago, had I known. (We had it done recently and saw almost immediate results.) Our doctor also included a steroid dose at the end of the IVIG -- which may be helping our d, but I can tell you we saw evidence of good changes within the first 24 hours. I wish we had just paid out of pocket and then submitted. We were knee deep in appeals with our insurance company and wasted way too much time. We ended up paying at the time of the procedure anyway and then submitting-- I would encourage you to at least get a date set for the procedure if that is what you plan to do and personally, I wish we had done it asap. If insurance will not pay, then borrow the money. Practically, we did the following:Advil, my d is 75 lb and we would give 300mg about 2 or 3 times a day. I called every day to the insurance case manager--many tears shed on the phone -- and there was a clear deadline by which they had to approve or deny. Since there are a number of different doctors doing IVIG now, you may want to check with different ones as to where they are seeing insurance paying, ie., is your insurance more likely to cover it at a hospital setting (where you may not need pre-approval) or at an infusion center. Costs also vary depending on where you go. Keep the faith -- if it is PANDAS, it will get better and it can be treated.

We had our youngest d (11) have IVIG last week. We wait now to see the healing-- Tonight I stumbled upon this PANDAS video on Youtube--It is encouraging, in an odd way--though we can put a check by virtually every one of the symptoms shown, for one or the other (or both) of our children--knowing that it has a name, interested doctors, and possible treatments--helps. Knowing others have had similar or the same experiences, and have gotten better again--helps. http://www.youtube.com/user/pandasparent?blend=23&ob=5

That is great to hear Stephanie -- but you have told us everything that they are not on, what are they on? What is working so well for you now? Specifics please:)

Here is a thread w/ doctors listed that parents have found helpful-- http://www.latitudes.org/forums/index.php?showtopic=5023 We would recommend Dr L -- no doubt. Respected professionally in the Washington DC area, (recognized as a top-doc by other doctors in the Washingtonian Magazine.) Mainline, experienced, compassionate, in touch re: Ps.

Having had excellent treatment from Dr L in Maryland, I would strongly suggest that if you are close enough to do so, to consult with Dr L. She is able to treat with abx, IVIG, and pex IF further treatments become necessary in your child's future (ie, your child subsequently NEEDS an immune-modulating treatment, IVIG or pex to become "normal" again.) As long as abx work then someone providing these will be fine, but IF you get into trouble you may only have those treatments which that doc. will provide.

This is fascinating. The recent article about this father, son, and the doctors, published in the Scientist: http://www.the-scientist.com/article/display/57941/ What a link between between immune dysfunction and autism. I know that our oldest d, during the worst exacerbation, would have been identified as having autism (moderate to severe) if someone had tried to evaluate her just during that time. I believe there is some type of connection between what Ps children are encountering and what children w/ autism spectrum disorders are experiencing.

Hi BWS--I am sorry you have had to find us here. Please tell Dr Schulman that her videos online are wonderful, that at least one PANDAS mom has watched them (almost all on PANDAS) and cheered outloud while watching--thanks. (ps--I am sure you have already found the "helpful threads" at the top of the PANDAS forum page here, and also the websites associated with PANDAS, hope these all help, www.pandasnetwork.org

FANTASTIC!!! This really boosted my spirits as we are facing a turn in the road that has always scared me. Thank you Vickie, and YES we will make it through.

Rockytop--praying for you. We may be right behind you-- lmkmip67, thanks for the notes, would you mind giving a few more details if you have them? weight of your child and amount of prednisone for those 6 days, amount of Benadryl and motrin--every 4 hours?? Thank you.

Wonderful news TH -- Thanks for sharing it tonight.

Hi HT'sMom-- It is my understanding that P41 alone may not qualify a person as lyme positive, but may encourage additional tests to rule out lyme certainly. -- especially if physical symptoms are present. TPotter--good point re: What is the percentage of people w/ positive P41 in the general public! Would be interesting if those in the area of Ps research could screen for this as they do blood samples. sigh.

Hi All-- I am FASCINATED by observations expressed by Dr T. He noted: 80% to 90% of the Ps children he has seen have tested positive for the P41 Band on the Western Blot. Our younger d did, and it was my understanding that P41 represents someone seeing actual bacterium w/ a tail present. Dr T also noted that it was very rare to have any of the Ps patients, that he has seen, test pos. on the Western Blot. He appears to speculate that the P41 may provide clues for our children. HOW many of us on the forum have children who tested positive for band P41? Thanks-- Dr T.'s Study: "Results: Only 4 of 72 patients studied met standard CDC serological criteria for Lyme disease, and in each of these cases, there was evidence of concomitant chronic streptococcal infection and/or chronic infection with Mycoplasma pneumoniae. However, 92% of patients showed IgG antibodies to p41 flagellin only, with 60% of patients showing IgG and IgM anti-flagellin antibodies. Immunoreactivity to p41 is not specific for Lyme disease, but may reflect exposure to a number of flagellated bacteria, with common signaling through a Toll-like-receptor-5 (TLR-5) pathway. Conclusions: These results suggest exposure to flagellated organisms, and potential TLR-5 activation, is a common and early finding in children that have a PANDAS-like disorder as operationally defined above. CDC-defined Bb Lyme disease is unlikely to be an exclusive explanation for a PANDAS-like illness" from (close to the end of the program pages): http://www.childneurologysociety.org/assets/annual_meeting/2010/CNS_Program_Bklt_2010.pdf

Oh My, WD--Very interesting find in the link to Dr T's observation re: p41. WOW! That is what our d had positive too-- and we are not one of the families that were "counted" in his observations, as we have never seen him--I can't help but wonder if many of our kids have p41 positive, as he seems to indicate, and so what IS that? "Note from Neurologist, Dr. Rosario Trifiletti regarding traditional Western Blot test for Lyme versus experimental IGENEX test for Lyme. (2010) Probably <1% of children with PANDAS/PITANDS have a positive Lyme Western blot by CDC criteria. I say this with confidence because I have tested a lot of kids from the NY-NJ-PA-CT area where Lyme is endemic I routinely check all new patients - I have over 200 PANDAS patients now in which this was checked, and found a TRUE positive Western blot in only one. There were a small number of patients who show two positive IgM bands (which would be strictly CDC positive) but I elected to do a follow-up test in a month, which was uniformly (100%) negative in follow-up. In contrast, 80-90% of patients (haven't recalculated data for a while) are positive for p41 (flagellin) on IgG and/or IgM. I think this may be telling us that a presently unidentified flagellated bacterium (or several bacteria) which is NOT B.Burgerdorfi is a strong PANDAS trigger. My goal is to find out what that trigger is .... I'll be presenting the above in October at the 2010 Child Neurology Society meeting in Providence, RI." Wow again! and thank you Dr T.!

Great thread, thanks to all who have contributed. (This exact type of back-and-forth discussion is what has helped us to "think outside of the box" and to TRY different things to help our children these past 3 years, thank you.) WD noted, in a previous thread: "So I wanted to ask this question. There've been a number of posts about Dr. Cunningham acknowledging that Lyme sufferers can test positive on her CaM kinase II "PANDAS" test. Lyme and PANDAS obviously share a strong infectious component, and maybe an autoimmune component too. So, by the same token, is it possible that kids who are truly PANDAS may test "slightly positive or indeterminate" on the standard Lyme tests?... There is a lyme doc in MD who has stated on his online blog that at least one lyme test, the C 6 Elisa, can "seroconvert" ie., show a false positive, if the person has BEEN ON ANTIBIOTICS... I mention this because in our case, we did have both Ps kids tested--HIGH Cam Kinase during exacerbations, one was neg. for lyme on the Western Blot, one had a few high bands. We followed up with the C6 lyme test w/ a well respected LLMD, the d tested was positive for lyme on the C6...though she had been on Augmentin XR 2000mg a day for a year when tested. Thus, after reading that at least one llmd suggested that some may seroconvert, and show a high false positive...what is a Mom to do? We followed the advice of a lyme doc. to treat her for 6 weeks w/ Doxy. and then moved back to Ps treatments, as she did have sudden-onset OCD, and I can't get around the fact that this + the urinary issues, + ODD, + handwriting, etc. fits Ps. thanks for the discussion--

Hi Noelle, I am so sorry you are going through this-- The one thing that stands out to me in your note is, "...that she improved tremendously while on biaxin..." That seems to be key in your understanding of what has helped her. I would agree. Also, now that she is having symptoms I would take her to a neurologist who can fully assess the tourettes/PANDAS issues. Also, the Cam Kinase and blood levels are high and appear to indicate a positive Ps diagnosis. I would suggest seeing Dr L -- especially if it is within driving distance for you. Take care--and hope it gets cleared soon.

Tamistwins--I only wish I knew. This is unlike any behavioral issue I have ever seen. When the ODD first started up we tried enlisting the help of a behavior counselor (multiple times per week.) Our d continued to get angrier as the weeks passed--We have tried behavioral therapy, 2-hour reward/charts, etc.,etc. She is 11. None of these worked. The only thing that works is to leave her alone. She is now entirely reactive to my husband and myself--violent, screaming, etc. Threatens all types of things, throws things, breaks things. She can't stand for us to make any noise in the car, even breathing--OCD issues of all types. She has been violent towards us now for about 5 months. The OCD that came on with strep exposure this summer has essentially morphed into OCD ODD, a nightmare. We tried restraining her initially, all types of behavior rewards and/or consequences--THESE DID NOT WORK. We are a relatively calm, sane, "normal" family in the burbs -- I can tell you, I will never, never again look twice at a mother with a child "out of control"...and wonder why she doesn't "do something!" We have tried it all

I am so sorry you are going through this-- I can say that we have 2 daughters and both have high Cam Kinase II indicators when in exacerbation. They have RADICALLY different manifestations of PANDAS/PITAND. One classic severe OCD w/ mild ticcing, the other SEVERE obstinate defiance, including violence directed primarily towards myself and my husband. She also has severe sudden onset OCD, but that pales in comparison to the damage that the ODD behaviors have caused in our family. --and this is a child that has always been a joy to be around before this started, SWEET and kind-- I hope that you are able to find help for both of your children. If I were you I would have both girls tested for Cam Kinase levels per Dr Cunningham's lab asap.

HT'sMom-- There are many parents that would attest that IVIG worked wonders for PANDAS. As I am sure you know, if you search on IVIG and plasmapheresis "in general" you will find many internet references relating to the use of these treatments for autoimmune issues of all types. Personally, we have not yet used IVIG, but I believe it may be around the corner. When you are "ready" there is no doubt--as in our case, we have to DO something. Dr K asked us, 2 years ago now, if our child was "this way" at 20 would she be alright? I can whole heartedly say that if our child was "this way" still at 20 ... this younger d would be entirely non-functional, either in jail, or institutionalized. At this point, we know we have to try to help her back.

Good points JAG10-- I am not familiar with the BASC-2 but sounds useful as an assessment. Maybe we would be better off (at least as far as available treatment) if we had a more standardized approach to medical treatment. Canada has formally recognized IVIG as a reasonable treatment for PANDAS!!! Here I quote: " To help ensure IVIG use is in keeping with an evidence-based approach to the practice of medicine, the National Advisory Committee on Blood and Blood Products (NAC) and Canadian Blood Services convened a panel of national experts to develop an evidence-based practice guideline on the use of IVIG for neurologic conditions. The mandate of the expert panel was to review evidence regarding use of IVIG for 22 neurologic conditions and formulate recommendations on IVIG use for each..." they go on to describe findings, and on p. S99 they discuss the findings: ..."Although the evidence is limited to one small placebo-controlled trial, (this was published in 07) the results are compelling. In the opinion of the expert panel, it is reasonable to consider IVIG among the options for treatment of PANDAS. The panel emphasized that this syndrome is not well understood, and diagnosis of PANDAS requires expert consultation. The optimum dose and duration of IVIG for treatment of PANDAS is uncertain. The randomized trial used 1 g/kg for 2 days and there was agreement that this is a reasonable option." they continue: "Recommendations: Intravenous immune globulin is recommended as an option for treatment of patients with PANDAS. Based on consensus by the expert panel, diagnosis of PANDAS requires expert consultation. Dose and Duration: Based on consensus by the expert panel, a total dose of 2 g/kg given over 2 days is recommended as a reasonable option." from: Guidelines on the Use of Intravenous Immune Globulin for Neurologic Conditions, Feasby, Banwell, Benstead, Bril, Brouwers, Freedman, Hahn, Hume, Freedman, Pi, and Wadsworth. from: Transfusion Medicine Reviews, Vol 21, No 2, Suppl 1, (April 2007): pp S57-S107

EAMom, on 08 April 2011 - 09:44 PM, said: "...I do like Dr. B.'s approach (multiple HD IVIG's)...I do wonder if my dd would be closer to 100% if we had taken that approach...Maybe Dr. B.'s approach is more likely to bring a cure? It's hard to know." We need some kind soul to be monitoring the effects of these different treatment approaches--to try to determine what IS working and what is not, to verify, to record, and to SHARE what is working. We need a focused "band leader" among the parents, doctors, researchers-- Someone who can bring them together yearly to compare what is being tried and what works for our kids. Please. The momentum is not easy to sustain unless there is a continuing, focused effort. NIH would be the logical place to carry the torch on this, let's hope they seize the opportunity. The Autism bio-medical movement had Rimland (a parent and PhD researcher), and subsequently Edelman, at the helm of gathering doctors and researchers on a yearly basis to confer (from across the country) as to what people were "trying" and what results were being seen. From that grass-roots movement (validated by the presence of CONCERNED doctors and caring researchers) came an incredible movement of help for children with autism (DAN.) Let's hope this wave of interest in PANDAS/PITAND results in better treatment and focused research that is tied together by collaborative sharing of information so the suffering children, afflicted by this horrible illness, will be well again. (I posted this train of thought on an earlier thread...but wanted to post more visibly on this critical need.)

Hi EAMom--Do you know what the protocol is for Dr B's approach? 2/kg?, how often? how many times? --is it done whether or not the child continues to be symptomatic?? I hope that SOMEONE is monitoring the effects of these different treatment approaches--to try to determine what IS working and what is not. We really need a focused "band leader" among the parents or doctors, someone who can bring them together yearly to compare what is being tried and what works for our kids. Please. The momentum is not easy to sustain unless there is continuing, focused effort. NIH would be the logical place to carry the torch on this, let's hope they seize the opportunity. The Autism bio-medical movement had Rimland (a parent and PhD researcher), and subsequently Edelman, at the helm of gathering doctors and researchers on a yearly basis to confer (from across the country) as to what people were "trying" and what results were being seen. From that grass-roots movement (validated by the presence of CONCERNED doctors and caring researchers) came an incredible movement of help for children with autism. Let's hope this wave of interest in PANDAS/PITAND results in better treatment and focused research that is tied together by collaborative sharing of information so the suffering children, afflicted by this horrible illness, will be well again.

Thanks for the advice All-- This threatens to undo us, but there is no way that is going to be allowed. T.

Peglem--your box is full--I will try again later.

WD! Thank you for that explanation--HOW have I missed that high Cam indicates infectious (most likely) causation--Good heavens, that says so much and explains the difference from "regular" OCD, etc. thank you!