JAG10

Voice America hour long interview links with Dr. K, Dr. L and Laura, and Dr. Trifiletti and Lynn pinned up top

Voice America Interviews Autism One; A Conversation of Hope Hour long radio interviews with PANDAS experts and parents of their patients Dr. Kovacevic: http://www.voiceamerica.com/voiceamerica/v....aspx?aid=43934 Dr. Latimer and Laura Methos: http://www.voiceamerica.com/voiceamerica/v....aspx?aid=44414 Dr. Trifiletti and Lynn Johnson: http://www.voiceamerica.com/voiceamerica/v....aspx?aid=44551

Can anybody pin up top or does Chemar have to do it???

Does anybody know if all the Voice America interviews are pinned up top? I think there are 3; Dr. K, L, T, right?

Try this: http://www.voiceamerica.com/voiceamerica/v....aspx?aid=43934 It's awesome! I made hubby listen to it too before our phone consult. It helps with his Croatian accent too

This is GREAT advice! The only thing I would add, is to listen to his VoiceAmerica interview before your appt. Get his basic lecture for free fresh in your head and you will be better able to recognize when he is going down that road. So many parents... he has to assume you don't know anything unless you keep the specific questions coming.

Hi Amy, I can relate! I'm taking dd10 for a follow-up appt to Chicago in two weeks and bringing dd7 with us for that very reason. She too has highly elevated titers, but her symptoms are so much milder, it's hard to tell..... what are the results of being raised in the chaos of a PANDAS household your entire life? We're getting ready to re-run her lab work before we go, but I'm dreading it! NOTHING resulted in more anxiety for dd7 than having her blood drawn! Are you going to ASHA in Nov.? If so, we should get together! Jill

My dd10 eyes looked "blacked out" like you could barely tell she has hazel eyes.

Hope you don't mind if I jump in here... I posted this somewhere else, but I don't think anyone responded... Has anyone on here had their child test negative for band 41?

It's described as a "lace-like" pattern, but I think it kinda looks like large honeycomb veins beneath the skin. It's most pronounced when chilled, like when getting undressed when it's cold and more common in younger females (the benign version.) DD10 has many scars from picking at mosquito bites on her skin (ocd) and I'm amazed at how much healthier her skin appears post ivig; even her scars look such much better! The livido reticulitis was just one more little thing that added up to that something just isn't right here beyond mental health pre diagnosis. Yes, that band 41 is a mystery. Must be some cross-activation that has not been determined yet.

You know, Justine... if we don't ask, we'll never know. For example, my dd10 had/has livedo reticulitis which is a skin pattern on legs and arms that can mean nothing or can be related to autoimmune disorders. Dr. T identified it, but didn't think it was related; hadn't seen it (but may not if not looking for it) in other patients. I brought it to his attention and he identified what it was. There is another parent, with twins I think, whose children also have it. It "went away" with steroids and returned. It has been completely gone since ivig. How many minor symptoms/conditions are there out there like that? We may have a better chance of raising those possibilities than the overworked, undermanned physicians.

Melanie, I don't have an answer to that, but your post just made me think about what we've been told and have heard many times here... changes are positive; good changes, bad changes, all positive and much better than no change. You have and continue to work so incredibly hard for your son... you guys are due!!! jill

Depending on where your treatment is taking place, your child might have a "hospital bracelet" on which might help. Poor bubby and with a layover! We got stuck on the tarmak cause Obama was coming home to Chicago for Memorial Day Weekend and one entire side of the airport needs to be cleared for Air Force One to land.... c'mon, is that really necessary ?

Hi Dan, Many of our children have had to travel post treatment. We flew home the evening of day 2 and the "massive headache and nausea" came in the air, right on cue. The docs can prepare you for this and give you a plan. Dr. K armed us with two doses of prednisone for the trip home (which is good bcs I dropped one in between the plane seats ) Itdepends on how you look at it and who will be going. It was just my dd and myself alone. She felt TERRIBLE on the plane, but all I had to do was tend to her, I wasn't driving;having to worry about the road and my child. Our flight was very crowded and I didn't get much sympathy from the crew, but I did advocate for us. When boarding, I told the gate attendant I had a child with special needs who had a medical procedure and I needed to board early, so we got on right after first class (do it, don't be a martyr!) Planes are very noisy and noone heard of noticed her moaning or thrashing except the man sitting next to us who was very understanding. When we reached our destination, I told the flight attendant to have a wheelchair waiting for us at the gate which is a must do!!! They were happy to wheel her out so I could just worry baout carrying our belongings. It is definitely doable! Just don't be afraid to speak up and get a little help when needed. jill

That's an interesting line of thought. My dd had one short febrile seizure at 16mos and that was it. But when she was 5 she started with these intense staring spells that two pandas docs have told me are a related symptom. She's had 3 normal EEGs at 5, 7, 10 to r/o seizures since then.

DD10 is only 6 1/2 weeks post, but I would concur with SF Mom from what I've seen thus far; less and less and less.... keeping fingers crossed....

Ok, that reply is cold. I feel bad now. I did read the post before replying and am aware the question is inflammation. Yes, I do agree we have a lot to learn as is the case with most diseases involving the brain. I do stand by what I posted. May it be "mere" inflammation or a true injury both classify as an insult to that part of the brain. The symptomatology will be milder but still a version of the functional totality of that part of the brain. There are so many relay or connection pathways in the brain that its almost impossible to identify the add on symptoms or why they occur. After 24 years of experience with peds neuro academic and clincial, I'm still in awe of how complex the human brain is. Anyways, I'll quit here. Jodie- it's summer; don't feel cold or bad! We're all cyber-friends here; you don't have to have a medically related resume to have a voice (even though many of us do.) Sometimes parents glean a nugget of info from their visits with the experts that help further bring the puzzle into focus, that's all. As Karen's post indicated, the whole "balance of strain vs brain" debate is not novel, but reworded and resurrected periodically. Although I disagree that it is impossible to discover why certain core symptom clusters occur or respond differently to treatments, I definitely respect and encourage your right to express your opinion. Debate is healthy and the only way we learn. If my reply indicated anything to the contrary, I sincerely apologize.

We're not talking about brain infection or lesion (damage), we are talking about inflammation w/o damage. We know our children can change from episode to episode, or if in a chronic state graduate symptoms from on area to another. However, it seems each child has a set of primary, core symptoms that are their nemesis and that is what this question is referring to. Yes, my dd10 has had transient tics over the years. She's also had language issues come and go; my favorite was when she wanted a biscuit and asked for a "puff-pucky", classic Wernicke's!!! But her core symptoms over several years have always been behavioral/cognitive/OCD stuck, not organized, not rituals, not tics. Dr. K told me the "behavioral kids" like mine have had a great response to ivig, and so far she has. But why? Is it something about the molecular mimicry of a particular strain or is it more the neurological genetic predisposition of the child or something totally different? Do the physicians and researchers already have a hypothesis? More data collection via survey may at least reveal suspected trends. Of interest, dd10 had a SPECT scan done when she was 7 to examine which part of her brain was over or under active. We suspected the ACG (anterior cingulate gyrus), the gear shift of the brain because she was getting "stuck" all the time and not switching gears. What the scan revealed was diffuse over-activity throughout the entire perimeter and through the center of the brain similar to a bipolar brain, yet she hadn't and never has had grandiose, anger, tantrum or rage issues. The doctor's expectations of her symptoms based on her scans did not match her symptomology. So much yet to learn...........

It says at the top to all 3 weeks for delivery due to editing.

The million dollar question. I don't think that they have typed any strains of strep thought to be responsible for PANDAS yet...but it is well known that only certain strains cause RF and other strains attack the kidneys... Please, someone smarter and more informed that me...chime in! But I often wonder if you were to compare symptoms to same areas, would you be looking at similar presentation...if I had to say focally or diffuse inflammation for my daughter...then I would say her symptoms would probably seem more diffuse too...and we are only and hour and 1/2 from each other. I wouldn't say she was drunk-like...but she just stopped functioning, and didn't seem aware. I think that's a good hunch, maybe the MAP will shed some light on the subject. Certainly the I-95 corridor looks heavy. Of course, intoxication hits individuals differently. Some get silly/annoying, some in a stupor/forgetful, some anger, argumentative and some violent. All out of their own control.

It's not yeast, it is behavioral regression; she was acting about half her age. And it has resolved since ivig.

Amy- so glad to hear your daughter is doing better!!!

Didn't someone say Dr. Cunningham said there were several strains that could put PANDAS in motion? Do some strains mimic a specific subset of neuronal tissue while other strains mimic neuronal tissue in a more general way? Is it the bacteria or the individual child's brain determining symptomology presentation???

Do you think based on presentation of symptoms, that the anti-neuronal antibodies attack a specific focal point in some children's brains and attack more diffusely in others? Or for another reason, brain inflammation occurs focally in some kids and diffusely in others? I was thinking about how some parents post very specific, but horribly severe symptoms in their children that are clearly impairing, but their children's cognitive processing and awareness of what is happening to them seems intact. This is not my dd10. If I had to guess I would say her inflammation is diffuse. If I had to pick one word to describe her most predominant symptoms it would be "intoxicated." Silly, goofy, pleasure-driven, sloppy, difficulty learning, paying attention, focusing, controlling bodily functions, cognitive fog/unawareness. It's a diffuse, overall impairment. Like drunk and equally responsive to Ibuprofen So, if the basal ganglia is analogous to a giant ball of rubber bands, why is it more a case where are all the bands seem to be inflamed in some kids, yet others are having inflammation of very specific bands? I don't know if I'm articulating the question correctly.....

I have Independence BC/BS too and the HMO (Keystone) not the PPO. Here's what has happened with us so far.... We paid for everything up front and our attitude going in was if we were reimbursed anything, great! To upgrade to the PPO would have cost an increase of $4000 in premiums, so we did not pay that this school year or last and figured paying that amount "out" in our decision. When the doctor's office told us to "contact" their insurance company, that made me uneasy. Either I'd have to play really stupid or I was afraid I was going to say something that was going to blow it. Long story short, I did not call. Oakbrook called and the insurance company said they had no info from the doc, which I knew. Oakbrook submits a bill for 3 codes; 2 IV codes and the Gamunex. Keystone pays 70% out of network for the IV codes totally $4550! This amount has already been paid and Oakbrook is sending it to us. This is with NO info from the doc, they are still waiting for that to make a determination about the Gamunex and the physicain's fees. So, with no pre-cert and if they decide to pay, we could get dinged another 20%, so 50% of $7000 (Gamunex) and $2800 (physician) is still on the table, which if we did receive would be almost $10K and we paid out a little over $11K. I did nothing right and everything wrong and may be benefitting from some dumb luck. Another person you can consider contacting is PA congressman Dennis O'Brein. Denni is a HUGE autism advocate, he has 4 school-aged sons and he is incredibly compassionate. If there is anything he can do to help you, he will!!!