JAG10

We would be in that category, P. Mom Failed 13 of 14 serotypes, twice and sky high titers before IVIG, no history of a positive swab or culture whatsoever. I like to think of it like this....It's not that the army has no bullets, but that they are confused and disorganized; shooting anything and everything including their own command center.

Christianmom, Those testing intervals are fairly close together, so Eljomom's comments could be in play. There is so much uncertainty, even with measurements that are objective. The BIG question with many of these blood tests is...are they measuring anything else besides what they are reporting to be a measurement of? For my dd who has never once swabbed positive, anti-DNAse B measurements have closely correlated to her degree of PANDAS symptoms in that when DNAse B was over the tilt measure, so were her symptoms. The lower they became, the closer my dd was to "typical." This is not true for all PANDAS children, of course-not much is. But some of us have noted this correlation; Mom MD comes to mind at the moment. No Lyme involvement here, not with Mom MD's either, I believe. IVIG (5/2010) significantly lowered my dd's anti-DNAse B titer, I can't tell you exactly how much because I don't know how high her titer reached, just that it was over 1360, but IVIG decreased it by at least 1000 and her symptoms improved significantly. When we were all exposed to strep in the fall, ASO and DNAse B all rose, but then fell again. Her anti-DNAse B titers haven't come close to rising that high again post-IVIG. Interestingly, my dh and I had elevated ASO but not anti-DNAse B... This may not be relevant to your child whatsoever, IDK. Just thought a different perspective may be of some value. Best wishes for good health! Jill

Oh Tammy...as soon as I read HOMEWORK I knew you were in trouble! Next time you sense yourself getting backed into a corner like that, give him a ridiculously short, obtainable time period (like he needs to write for 1 minute or he needs to tell you aloud what he would write) so you can save face and then let it go! Especially at these young ages, teachers don't want ANY kids, especially our kind, battling over homework. In our experience, albeit my dd is 11, the post ivig uptick in symptoms is like a pendulum that loses its energy with each swing or at least that is the way I'd describe the first ivig last May. Her 2nd was 3 weeks ago and the uptick in symptoms has been very mild. She's just coming off of a very, very bad cold that started with a sore throat (dun, dun, dun) and then developed into severe sneezing, congestion, coughing, ect. Interestingly, she's never been a sickly kid; weird to have low IgA and low IgG and hardly ever be "typical sick", but a really bad cold in the winter is a typical occurrence, so maybe it's a good thing A good friend from this board sent me a card after her first ivig, it read "When you feel like you're at the end of your rope, tie a knot, hang on and swing!" .....well, at least hang on.

Hi Tami, I am an SLP and my pandas dd11 would have significant fluxuations in her verbal skills that would coincide with the other behaviors. Particularly word retrieval difficulties and circumlocution (talking around something w/o getting to the point.) She also had a frontal lisp. All of these went away with pandas treatment including the lisp. She did go to speech at her school, but this was before IVIG and I felt she did not demonstrate the awareness to implement what she was learning, so I pulled her out. I'm not implying that you should not pursue testing, I'm just sharing my perspective as a skilled observer of my own kid. I do use what I know about word retrieval with her when she is studying to help her make connections for easier retrieval, but that would help anyone. Diane German is an SLP and word retrieval guru. She has a great book out called It's on the Tip of My Tongue and depending on your child's age you could use some of the techniques described in the book to help her make associations when she needs to memorize material for school. If you send a letter into the school requesting a speech and language evaluation, that will get the ball rolling the fastest. The timeline starts ticking from the moment you sign the permission to evaluate; it is 60 calendar days. Good luck! Jill

Oh fantastic, Peg!!!! What great news! You made my night! Ironically, I once figured out how much better my dd would do off a particular psych med because she had a stomach virus and couldn't keep it down for a couple days. Turned out to be a blessing in disguise.

Hopefully, the practicing docs and researching docs will continue to collaborate and collect data on all these kids. I wonder what the similarities, if any, are among those who grow out of it and those who don't? I have no regrets on choosing IVIG for dd11, it was absolutely necessary. My dd7 is another story where her symptoms are mild, thus far, do not inhibit her functioning socially or at school...but we watch. At this point, the risk does not outweigh the benefit for her, so NO IVIG. I used to think the whole "cure" debate was a matter of semantics, but I no longer feel that way. I don't think IVIG is a cure; it is a shot at greatly improving (maybe to the point of being asymptomatic) the quality of life for very sick children. Praise God your girl is doing well now and free to become the woman God intended her to be.

My dd11 was hurting herself scratching and picking at her skin til it ulcerated, many scars all over her arms and legs. Restrictive eating was pretty scary too. She was only able to attend school on a cocktail of psych-meds and she barely got anything out of it. It's a matter of severity and the result of each individuals benefit/risk analysis. So your niece improved when her period began? We are keeping fingers crossed between treatment and puberty dd's worst days are behind her.

Peg-This isn't directly related but along the same lines.... When we did the steroid burst "test" pre-ivig, I had to start backing off my dd psych-med cocktail because as the burst started to work, the meds no longer had the same effect. Dr. K told me "It was not the brightest idea of our lifetime" but psych meds are a very delicate balance and underlying improvement could render them no longer effective or worse-have a negative impact,

I found this: The virus lives only in the skin and once the growths are gone, the virus is gone and you cannot spread the virus to others. Molluscum contagiosum is not like herpes viruses, which can remain dormant (“sleeping”) in your body for long periods and then reappear. So, assuming you do not come in contact with another infected person, once all the molluscum contagiosum bumps go away, you will not develop any new bumps. I don't know if the same is true for warts.....could google again

Does anyone know how long these types of viruses are active versus dormant? I'm thinking about my younger one, dd7 who caught molluscum last August. She's had some low-level PANDAS symptoms that have not gone away with abx. Mild lip-licking, reassurance (yesterday we went to a Chinese New Year festival and she asked me 11 times if I still had her bear in my purse.) Anyway, we went to the dermatologist and did the beetle juice, but they would not touch the ones "in the buttocks crack" bcs it can do more harm than good. Plus new blisters continue to appear. Apparently this can go on for 18 months! Does that mean the virus is active all that time? I would think new blister/bumps/warts mean the immune system is still being challenged, huh? Her symptoms are mild to me in that she is happy with friends, does well at school and is slightly needy at home. At this point, I see her as a "close watch" but seeing she is on prophylactic azith, I don't think I'm willing to take her treatment any further at this point. So, I'm wondering if these low level symptoms are not necessarily a "shift of baseline" but a long, mild reaction to a virus that can hang around for an extended period of time?

Hi Norcalmom, My dd had her 2nd IVIG last week on Wed & Thurs, vomited Friday: one and done. I forgot to give her the friday dose of prednisone Dr. B prescribes for the 2 days pre, during and post ivig. When dh called me to tell me about the headache and vomiting, I realized I forgot, he gave it to her and she's been fine since. With 1st IVIG, superduper headache after 2nd day dose of Ig, prednisone that night, then fine. 3 weeks later, mild fever, vomiting; 1 time, then fine. 4 weeks after that, same thing; mild fever, single vomiting episode, then fine. 5 weeks after that, same thing, mild fever, one vomit, fine: like outside running around, playing field hockey, fine. Those 3 single episodes @ 3,4 & 5 were it and they were very, very brief and ended at 12 weeks post IVIG. My dd11 also had high myco-p; 1.65 before IVIG and over 3.02 nine weeks post IVIG, then back down again to 2.2 two months later. I am fairly certain she did not have exposure to myco-p between pre-ivig and post ivig measurements and she was on full strength abx the whole time. The measurement went up from the IVIG itself, but her symptoms-some very mildly worsened, but most of her symptoms significantly improved. Jill

I was trying to think if there was an age, a developmental period of time where all this comparing and cognitive/linguistic ordering would be appropriate, but I haven't found anything yet. Anyway, in our case, I'm sure at 11 years old, it is not developmental.

Hi Colleen I have no idea what glomerulonephritis is or what the symptoms are. Reading your post just made me think about the notion (myth?) that PANDAS comes from the mother's side and so I was wondering if your SIL's family had any PANDAS predisposition? It also seems like we've had a couple adult males reporting PANDAS in their own kids, yes? I've never noticed on this board one gender noticibly out-numbering the other either. I also wonder what is a stronger predisposition: auto-immune disease or mental health disease? I thought I remembered at one time Diana P putting out some data that said 50% of her group surveyed had a family hx of 1-2 generational mental illness and 50% had a family hx of 1-2 generational auto-immune illness. Does anyone else remember that? Could be another poll......

You have to judge your ds's anxiety and fixation level to determine whether to explain anymore ahead of time. I don't tell my kids anymore than absolutely necessary because it doesn't ease their minds, just extends the period of time they are upset. But, I won't lie to them, so now that they are older, they ask all those "needle and shot" questions at the first utter of doctor.....

Nancy makes some great points. You have a lot more information to work with than we did when dd11 was then 7 and we started trying all these meds. All I had to go on was the information the psychiatrist provided. So, when I reported to her what we are calling behavioral activation symptoms, she told me it was because my dd had an underlying mood disorder. There came the mood stabilizer, then the SSRI, then the stimulant. I was led to believe we just hadn't found the magic combination of brands at the magic dose of these 3 variables that were going to make my dd functional. I told myself I was not going to let the scary names these drugs were called like atypical antipsychotics or antidepressants or stimulants stop/shame/frighten me if they were going to help her. AND if they had helped her, she would still be taking them and I would have never known she had PANDAS (because she was asymptomatic.) That is a significant consideration....you know way too much to let a psychiatrist that knows nothing about PANDAS convince you of what I was convinced of for over 3 years. You probably wouldn't consider seeing a psychiatrist that wasn't fully versed in PANDAS. I did contact her about 6 months ago and tell her that my dd has PANDAS and is currently off all psych meds. She was "shocked", but happy we now knew why nothing had truly worked for her. I also agree the 5-HTP would be along the same lines as Very Slow and Very Low. When my girl was 6, we tried St. John's Wart and had success with it for 9 months before what we now know was the piling on of myco-p that sent her over the edge.

What we experienced is called behavioral activation. I think it is Dr. Murphy who writes a lot about this with SSRIs and PANDAS. For my girl, the meds never worked the way they were supposed to work. If an SSRI was supposed to take several weeks to build up in her system, we would see a change, usually positive, right away-like the next day or the day after. Then, sometimes a week later, sometimes longer, we would see an uptick in behavioral regression, silly, goofy behavior (NOT yeast: it always coincided with the meds) and then the positive benefit of the SSRI would disappear before it was supposed to have even begun. I have heard some psychs say if you go really, really slow and low with the dose you can avoid this, but that was not our experience. Just one other thing I'll throw in this....once you have psych meds in the picture, it is really hard to know what is going on with your child. With every change, you're left wondering...are they sick? is it the meds? did the meds "poop-out?" If behavioral symptoms are your only signal for strep, it gets very muddy. I wouldn't say they NEVER helped AT ALL, just they never helped consistently or without causing other problems that were just as bad as the ones you give the meds for in the first place.

Right? I didn't know if it was a needy, annoying thing...or more With my girl, a lot of it centers around "favorites." She tells Sonic (our kitten) he is her favorite boy and her Valentine. dd11-"Weeeell, Daddy's my favorite boy. Do you love any other boys Mommy?" Me-"Grandfather" dd11-"Right, first Daddy, then Grandfather, then YOU, Sonic." Why can't telling the darn cat you love him be good enough? Ditto on the "origin" questions. No big deal in isolation, but curious in totality. You're right, it may just become part of them. I don't let it go too far before I let her know it's annoying. If I don't, who will?

My dd11 exhibits this need to rank order things....not in a "line them up" object-fashion, but by preference. I always thought it was her being needy, always needing to compare "Who was a cuter baby, Mommy? Who had chubbier cheeks? " And there is definitely a needy component to it, just wondering if it is a flavor of OCD as well? She questions me a lot about my preferences and then tries to corral me into rank ordering them, not just in comparison to her sister either. An example is something like this: dd-What's your favorite meat, Mommy? Me-I like veal. dd-What else? Me-I also like Daddy's flat iron steak and blue cheese pinwheels dd-I like pot roast, do you like pot roast? Me-Sure dd-Which do you like more pot roast or veal? Pot roast or pinwheels? Veal or pinwheels? And on and on it goes until I say Enough or We're moving on now! She has never been an orderly OCD kind of kid, quite the opposite in that when symptoms were bad, she was driven to disorganization where her room could be completely tidy and she would just pick items up and move them around, scattered all over the floor, a piece here, another piece there, in a fairly short amount of time, stuff was everywhere with no logic behind why that had occurred. Some of it was hoarding too, all the little scraps and pieces of objects she would destroy to make something "new"..... creative, yes...but in a disordered way. DD11 had her 2nd IVIG last week. Positive signs thus far I would identify as increased cognitive clarity characterized by easier flow to conversation and ideas expressed verbally, quick word retrieval, neat handwriting and flow of written expression, more independence with homework, longer periods of time attending to tasks w/o needing redirection. Negative signs have been a slight uptick in OCDish tendencies (albeit, I admit being cornered about pot roast is very small potatoes) and some increased mood lability, but I wonder if that is related to increased awareness and verbalization too? She did have a bad headache and vomited the day after, which was totally my fault as I forgot to give her the prednisone that morning. My husband called me at work, I told him what I forgot, he gave it to her and she was fine about an hour later. She has remained headache/nausea free since. With the increased ease and willingness to communicate comes her sharing her feelings of being out of sync with her peers and feeling not as quick or smart as them. I know it is actually a good sign, to not be oblivious, to let her cry on my shoulder and to then reassure her we will fill-in whatever holes have occurred from her being sick; failure or giving up are not options, we will move whatever mountains or molehills necessary, one bucket of soil at a time.

Hi Friends, My boss, the Director of Special Education for my District, sent me an email asking for information on PANDAS so she could learn about it. SHe said she was at a solicitor's meeting with other local Special Education Directors and the subject came up as one of her counterparts had a significant case (wonder which one of you THAT is?) None of the other Directors had even heard of it and she had only heard what I told her about my dd11. So, what would you send her? I'm afraid if she invests the time to read Saving Sammy, she will have too narrow, specific a view of such a complex matter. Any thoughts?

Hi~children with PANDAS can have irregular immune markers (mine had low IgA, IgG and no response to strep pneum or Influen vaccines), but a low or no ASO response doesn't necessarily mean an across the board hypo immune response. My dd11 had very high ASO and Anti DNAse B titers (but never swabbed or cultured positive-ever), but many immune markers were low. It just seems to me after reading these posts for a year kids either swab/culture positive consistently and don't have the elevated titer response OR never swab positive and have highly elevated titers. I'm sure there are some out there that have both...which would be normal:swab positive followed by a titer rise the appropriate number of weeks later. But that is kinda the hallmark of a PANDAS kid...not much turns out the way it is supposed to. As far as running bloodwork on the immune system, if you have a PANDAS knowledgeable, friendly doctor that is also an immunologist or related MD, sure. Just know who you are dealing with ahead of time because if the doctor is unconvinced or confused about PANDAS, it could be a frustrating experience for you. There are docs out there, claiming to be PANDAS knowledgeable, who will say "No titer response, no PANDAS!" This is absolutely not true. You can find many threads on this board loaded with kids with no titer response-LOADED! If you find a immune doc open to learning and helping you, they could contact Dr. B for consultation. Best Wishes!

Was this the one on the Marshall Project or Protocol?

Yes, she does. She is old enough that I have discussed what is going on and why the IVIG is taking place, at least as well as I understand it; lol There have been other folks who have received HD IVIG at home. There is a wide swing in what different facilities will charge for the "magic juice" (IG) So perhaps, their cost is $40/gram and they charge the patient $120/gram, but the facility fees are minimal. For a home infusion, your insurance company has negotiated a price with their pharmacutical provider and that is what will be paid plus the home health nurse's fee, also a negotiated contract. If Dr. B had not obtained approval for my dd who is getting her 2nd HD IVIG next week to help with so residual concentration/task completion issues, my plan B was home health. I had called Costco and they quoted me a price of $46/gram for Gamunex plus $20 for the Dextrose flush. That is much, much less than I paid out of pocket at OBSC. There are a few different variables that can be manipulated; the facility fee, the doctor's fee and the cost of the IG. We have to look at those 3 variable in concert to know a good deal.

Phasmid, I will offer my dd11 as evidence to Dr. K's claim. Although not exactly the same thing, skin picking is viewed as very similar to trichotillomania. My dd was severe, picking her skin to the point of ulceration and wide spread scarring. With one HD IVIG this completely stopped, immediately and has not returned at all since May 2010. Even with a few mosquito bite triggers over the summer, not an issue, period. Best wishes getting insurance to reverse their decision.

Tenacity- I agree with you and many, many others that have commented on the "brewing" stage prior to the explosion of symptoms that is being termed "sudden onset." But as we saw by another recent poster on here, parents that obseve and relay those brewing symptoms to doctors, including the IVIG study screeners, are being penalized as having had this too long??? A problem with this study could be....the type of parent that doesn't notice or question these brewing pre-sudden onset stage of symptoms is unlikely to be the type of parent who is going to find the IVIG study on the internet, no? OR Parents who do notice/observe, maybe have an older PANDAS child, have been through the trenches once already, are going to have to wise up, keep their mouths shut and report to the study screeners they have previously never noticed a darn thing out of the ordinary about their child prior to just now.

OMG, Melinda, you're worse than me!!! Ok, sister, we are holding each other accountable for our girly visits! Meanwhile, my PCP's office called a couple of months ago asking if I was still a patient cuz I hadn't been there since 07 I told Johnsmom, watch...I'll finally get dd11 fully healthy and functional and then I'll keel over.