JAG10

The quoted comment in the third paragraph is the only part of the article that definitely came from Leckman, the way I read it. Do you know who wrote the rest? The spin isn't in the quote, but all the summarizing and referencing to research that is not specifically identified.

For a short period of time (just a few days) my PANDAS dd complained that "her taste buds didn't work" and "food didn't taste right." This was shortly after IVIG (1 or 2 weeks if I recall). I did contact Diana P. (since I didn't know for sure if this was a PANDAS symptom or something else), and she said this was a symptom her son had....I suppose it falls into the relm of sensory issues....anyway, that was the only "new behavior" we had post IVIG and it didn't last long. That's interesting. I notice "food doesn't taste right" when I take ibuprofen.

I thought, in its best light, they were saying stress can be a trigger for exacerbation. Didn't Leckman's name come up in a questionable way a few week ago w/NY Times article?? I seem to recall several parents defending him as definitely pro-pandas. Perhaps he needs to be more careful in how his work is conveyed by others. This article came across as agenda driven to me.

Court has this skin pattern that can appear on her legs and arms, it looks circular, sort of like large honeycomb/lace-like pattern of purplish vein swelling and discoloration. We usually only notice it when she is chilled, like when getting undressed or cold out. etiology 1) Idiopathic livedo reticularis- completely benign usually affecting young women in the winter 2) Secondary livedo reticularis- related to various autoimmune diseases door #1 or door #2??? it can also be associated with the presence of cardiolipin antibodies..... GREAT, more antibody issues!! Court's family hx has MS, hyperthyroidism on dad's side and the OCD/mood stuff on my side; perfect pandas storm. Does anybody elses kids have this pattern on their extremities? I never knew what it was called, but Dr. T figured it out. I think it might be diminishing with abx.

Absolutely, Faith! All angles must be examined as carefully as possible. There's the research that may not apply directly to your child and the history shared by others. We put our emotions aside to the best of our ability, conduct a risk/benefit analysis for our child and then pray we are making the right decision based on our specific circumstances. These are questions that must be discussed. Not asking questions won't eliminate the risks. Thank you all for sharing the cases with new glottal tics.

Faith, In your experience being on the boards so long, has any parent reported seeing a totally new behavior resulting from IVIG rather than a significant escalation of a previously seen behavior? I'll use my girl as an example. Court, 10, has really bad behavioral regression, so I might prepare myself to see that amplified and for her act like a 4 y.o. if she had IVIG, temporarily. But she has never exhibited raging, throwing, violent outbursts. Do you recall any incidents of "activiation" of never before seen behaviors? Thanks, Jill

Joan, Strattera dosage is based on weight. That seems really low for a 15 y.o. My dd10 weighs 80lbs and takes 40 mg. I'm pretty sure that the range for her weight is 40-55mg. Honestly, I'm not sure how much it is helping anymore, but she just finished her first pred. course and we don't want to change any other variables at this point. Our prayers that success is yours with IVIG. jill

Verse, anyone? There once was a cool cat named Buster Analysis he always could muster Did you get his post? He’s smarter than most. No wonder my brain starts to fluster.

Hi Buster, You are such a wealth of information and so right about cost/benefit analysis. Let me bounce some thoughts. You reference the small Swedo study about plasma exchange and say that is related to non-sudden onset OCD. What I thought the abstract stated was not non-sudden onset OCD, but OCD not associated with strep, which means no history of recent positive cultures and/or no elevated strep titers (and implies the 5 were tested for such)? All OCD has to have a sudden onset at some point, right?. Boy, can that be hard to identify in a very young child. Normal child development is hallmarked by unusual behaviors and skills repeated at nauseum usually until mastery. So, strep is believed to be the culprit that sets PANDAS in motion. Is it only a certain strain of strep that can do this? Cases of sudden onset are documented at ages that are so old that we surely could assume that a child had been exposed to strep before 5, 7, 10 years old. So, is it probable that the 10 y.o. who has sudden onset OCD has most likely been exposed to strep multiple times before in their lifetime, but never before by the strain that triggers PANDAS? Am I understanding this correctly? If it is a certain strain of strep, what happens when a toddler or preschooler gets this strain of strep that puts PANDAS into motion perhaps with no symptoms of being sick? Could they begin to display repetitve OCD behaviors that parents notice, but monitor to see if it is just another developmental phase? The rough period subsides after weeks or months, there is some equilibrium and then the odd behavior starts up again. Maybe parents talk themselves into believing, they've outgrown this before, it's a phase, they'll outgrow it again. He/She is only 2, 3, 4.... now we don't have sudden onset. Now we have a child who has always periodically had an obsession with rocks, with arranging 100 legos in a perfect square, with picking the wallpaper off the walls, with playing "mommy" cleaning everything, ect. on top of other typical, but difficult preschool behaviors like hyperactivity, separation anxiety and on and on. Sometimes they are really good and not having any of these problems (parents know that normal kid is in there), but there have been these concerns all along. Perhaps these parents cannot identify a sudden, debilitating onset, but then their child has a really bad period that separates their child's behavior so far from their peers, the child is debilitated. The pediatrician has noted concerns for years, no sudden onset, no history of strep. The parents are sent to take the child for a psych. consult where one med trial is suggested after another, different doses, different combinations. The meds don't work, the child just gets worse and worse over time. How do we prevent scenarios like this with the current, narrow criteria? What safeguards can be put in place if we don't convince pediatricians to rule out infectious/autoimmune etiology at least prior to the psych referral or as standard protocol to the developmental evaluation? I just don't think the above scenario is that uncommon or that difficult to imagine happening. Please share your thoughts. These parents want their kids back from PANDAS just as much as those whose kids weren't infected until the child was so old that the sudden onset was obvious.

SF Mom, May I ask, how are you finding out about strep exposure at school? Does your school have a policy where families are supposed to report strep to the nurse or did you do something to arrange this at schoolor with parents directly? I've never been notified about strep in my daughter's classroom, but I've never asked to be either. Since Court is asymptomatic, I suppose I need to form a plan. One more thing; is pink eye always, sometimes or never strep. I don't get strep that I know of, but I do work in an elementary school and will get pink eye a couple times a year. Thanks for the help. jill

Come on Ann, it's time for spring cleaning!!!

Certainly, recovery and relapse cycles appear more common than not and those expectations have been made clear to all who seek information. But, positive response to autoimmune therapy, even if not permanent, should give any reasonable physician worth his or her MD something to seriously consider. Children cannot have positive responses to treatments that are not offered to them because they do not fit the research study criteria. Practice and research serve different purposes and, gratefully, we have some top docs who are pioneers in both; because of them, countless children will have some of their childhood salvaged. We all want that, don't we? I could be mistaken, but there seems to be an undercurrent of fear that if PANDAS application becomes too broad, it will be to its detriment. With each child and case history that is examined, more is learned. With each success and failure, more is learned. Risks have to be taken to learn and make progress. My intent is by no means to undermine heroic warriors like Diana; the parents who selflessly donate their time and resources, share their stories and move mountains one bucket of soil at a time. Their compassion is limitless and that is why I know there is the capacity to support and include any family who asks "Is this PANDAS?"

This is in response to the PANDAS Network update and some posts read over time. Perhaps some of the veterans or Diana herself could help explain this to me... Why is it necessary to continue to quarantine or cyber-exclude the children with "long-term" PANDAS? My understanding is that most docs are familiar and open to the textbook PANDAS; 24 hours normal to completely nuts following strep. It is the children with asymptomatic strep, the ones whose "sudden onset" coincided with the terrible twos or threes or younger, the ones who parents sought mainstream psychiatric treatment young and were put on psych meds that confused the whole picture, the ones whose titers don't spike, the ones whose systems are further complicated by other infections, ect., ect-I'm sure there are more. Are these children the rare ones, the zebras.... or are THEY the rule??? If the leading PANDAS experts in the country are treating these children and documenting on their websites that positive outcomes to treatment are independent of how LONG since the child's initial onset of symptoms, shouldn't we go with that? Shouldn't that be good enough to tone down the obligatory cautionary proclamations, especially from within the community itself? IMHO, the direction of the conversation needs a make-over; It is the obligation of the medical community to thoroughly rule out infectious and autoimmune etiology prior to mental health diagnosis or treatment in children. When that is the protocol, then this community can claim quite an achievement! Those parents with children with "long-term" PANDAS, who by whatever miracle came across the correct diagnosis and treatment after witnessing their children suffer for far too long, have an obligation to share the joy of their child's recovery and further educate all of their child's previous doctors and help pave the way so that all PANDAS children receive the appropriate medical care.

Hi Friends, This goes out to anyone whose darling is on behavioral meds; So, we're trying the 5 day prednisone course on Court; Finished today. She usually takes 20 mg Focalin XR (extended release stimulant)and 40 mg Strattera which is suppose to help her focus, but probably can't work with all the ocd stuff running wild in her mind, but the focalin does tame the hyperactivity. Okay, so day 2 typical meds (above) plus the prenisone; she's very quiet and reserved until late afternoon when you would expect the focalin to have worn off. Day 3, same thing, quiet, very reserved, but seems nervous and hands are shaking some. Day 4, I split the focalin xr in half so now it is only 10 mg, more talkative, more relaxed, even behavioral day Day 5, gave her other half of split focalin, same response as day 4 Has anyone out there needed to adjust their child's other meds, particularly stimulants, as a result of how they responded to the steroid? I mean, getting her off the stimulant would definitely be an improvement in baseline hyperactivity. Did anyone try to just grit out not giving other short-acting (<24hr) meds to better be able to judge the steroids effectiveness? Thanks-Jill

SLP is speech-language pathologist; we are also trained and practice dysphagia (swallowing dysfunction) therapy as the mechanisms involved are similar to speech. When there is difficulty with the coordination/function of the swallowing mechanism, you can see overt or covert signs of aspiration. Aspiration is when something, like food/liquids, gets in the lungs and can result in pnuemonia. An overt sign this is happening would be coughing; your vocal cords are trying to expell what doesn't belong there and this is a healthy response. Some people don't have this response and a bad swallow and get really sick. So, when she is spitting the food out, is she coughing or more like vomiting? Coughing would seem to indicate the food is going down the wrong pipe (trachea); vomiting would be more like it was in the right pipe, but there was difficulty moving through that pipe-which sounds more like what you are describing. That is why the softer bolus, alternating liquids and solids is helping; it takes some of the load off of the chewing phase. And then you get back to the OCD question... is she anticipating difficulties with foods that she perceives as difficult to chew and then triggering a gag reflex, ect. AmySLP is also an SLP and she probably works with swallowing on a more regular basis that I do. You could also try PMing her to ask her opinion.

Hi, Sounds scary. I don't have PANDAS swallowing experience per se, but dysphagia experience as an SLP. Are you noticing differences depending on what is being swallowed? In general, water is one of the most difficult substances to swallow bcs it is so thin. moves quickly, pools in cavities easily and "goes down the wrong pipe" if all the structures involved are not working in sync with each other. Thicker liquids would be easier. As far as food goes, we chew up food, mix it up with our saliva to form a bolus and our tongue pushes it backward so we can swallow it. Dry, crumbly foods that are not chewed well or swallowed to quickly can be problematic like rice or pretzels. Can you give some examples of foods or liquids you've observed her having difficulty with? I will say this... sometimes swallowing can get in your head. I have several SLP friends who know too well the process of swallowing and end up aspirating bcs they are thinking too much about what is usually an automatic process. Plus, they talk too much when eating!

Vickie, My d10 was positve for myco-p on recent bloodwork. I think this was from 3 years prior when she was in 1st gr. What sticks out most in my mind about that illness was no fever and the cough that lasted WEEKS AND WEEKS!!! Interestingly, now whenever she gets a cough it can transform into a compulsion/tic behavior where you can tell she is just coughing more than necessary, but this too usually only lasts a few weeks. Her CBT therapist said this was very common in kiddos with OCD. Jill

Amy, I'm thinking of you. Your daughter is so fortunate to have such an on-the-ball mom!! Sending positive vibes your way. Jill

Bubbasmom D10 has had two normal EEGs during symptoms, several years into the syndrome and two years apart. One of her symptoms is prolonged staring/zoning out. The EEGs were ordered to rule out absense seizures. She has also had a SPECT scan which shows brain activity and her whole brain lit up over-active, but I doubt there are any docs ordering these or any conclusions being drawn from them. EEGs, normal, negative.

Our d10 uses Strattera with no negative side effects. She is prim. OCD, only transient tics occ. She started it before we knew PANDAS. It is supposed to take weeks to work. I don't know if it's bcs of PANDAS or if her metabolism is atypical (along w.everything else) but we noticed improvements in 2-3 days.

Really sorry for the rough day! I'm trying to recall your son's details; he had a PET scan w/inflammation and low immunoglobulins, yes? I remember someone posting an immuno-deficiency website that has specialists to help fight insurance coverage denials. Maybe someone can re-post that link. Do you think one of the 40 conditions is a close fit for your son?

I have 2 girls; one 10 w/glaring, debilitating behavioral symptoms, one 6 w/mild anxiety, IBS. Both with sky high ASO and DNase-b titers, mildly elevated myco p. Both asymptomatic of strep. Neither has been cultured for strep that I can remember, except when 10 yo's lab results came back. Dr. T had both of them on Biaxin, the 6 yo for only 10 days and IBS symptoms vanished. dd6 finished her 10 days on Monday, last night and this morning, she's complaining of a sore throat (yes, she still has tonsils). No congestion, runny nose or coughing. dd6 has only been to peds office for yearly check-ups in the past two years. Questions- How long do I wait before I take her in to get her swabbed? Do you think this is a coincidence? Could the abx have stirred things up to make an asymptomatic child now symptomatic??? Her peds office does not have weekend hours, so do you think it would be too soon to take her today or wait til Monday? Should there be a fever? how high? help?

That's a great idea, Alex! Melanie- if you don't already have an email address for your immunologist, try to get one before the weekend. That might make it easier for two busy docs to make initial contact.

Melanie, This is so hard, you're right. The lack of peace and consistency is exhausting. As far as the stammering goes.... Neurologically, stuttering is not well understood in general. Only recently had I heard of stuttering as a type of tic. Interestingly, stuttering is often "managed" rather than "cured" and some children outgrow it at puberty-hmmm. For those who don't, there are strategies, methods, techniques that work for a person for awhile, sometimes years, and then for no apparent reason, stop working. One method that is often successful almost immediately is DAF (delayed auditory feedback) where the person wears a device that delays the sound of their own voice and results in them speaking fluently. I know you said that Danny is reporting he hears others stuttering, not himself, but I wonder if a similar phenomena is in play here. Is he hearing stuttering with everything? TV? music? How about with reading? The brain is such an amazing and facinating organ. Can you believe that there are people who are deaf who "stutter" manually while signing? Often people who stutter will be fluent when the message is predictable rather than novel; so singing (you already know what the words are going to be in Happy Birthday) or reading- you don't have to create and organize the message. I wonder if he experiences any difference in hearing "predictable" language? I'm not trying to give you more to research, just some ideas. And this doesn't get to the underlying issue of getting him well. Insanity vs. acceptance-ugh!! Sometimes, I've felt like OMG if they're not going to have any success medicating her then maybe they will have success medicating ME so I can continue to live like this! Or sometimes, I feel so distraught I have the "Castaway" nightmare where Tom Hanks has to watch Wilson drift away because he knows he'll drown if he tries to save his beloved soccer ball one more time... Your feelings are totally normal. Hang in there, Melanie.

Thanks dut! I'll have to look into this re: dose, contras, ect. We did CBT, which is very $$$, the same time we started the abx. I think that is what helped rather than the CBT since she didn't seem to be implementing anything she was taught, just rather "stopped." But I know with bugbites, the urges will be much stronger than the fingers, ect. in the winter. She doesn't bite anything, it's all picking. I remember when she was 21-24 months old, she picked off all the mid-wall border off the wall next to her crib. Maybe that's just a coincidence bcs the body picking started all of a sudden in 1st grade after she lost 4 primary teeth in one week. We can't coincide with any strep bcs she's never had diagnosed/physical symptoms of strep, just regular stuffy nose/coughs/colds, but now we know sky high titers we're having a very hard time getting to come down.