amyjoy

It all depends on who you go to...there are some pandas literate pediatric neuro and neuropsych people but the standard ones may see things differently. We use a pediatrician who is pandas literate, and found that the immunologist we went to was way less than helpful and even a waste of time and resources, for us. there are some threads on this forum that include hundreds of referrals by area but i do not know how to locate them.

I appreciate the line of thinking in this conversation, alot. It feels like a step back and a look at the bigger picture. I always come back to that, this is not a strep infection that is supposed to go away with antibiotics, it is PANDAS, an erroneous response of the immune system to the infection. I also fully agree to the notion that some people already have a larger immune burden (or innate weakness) and that the strep (or lyme...) can simply be the straw that breaks the camel's back, that one last piece that causes the system to crumble or fail. Like you said, LLM, it could be an underlying combination of heavy metals, other infections, toxins, gut problems etc. Thus I also believe its really important to check those things, to do the GI testing, to look for heavy metals, to check for gluten problems and so on, in addition to the regular blood tests for immune/pandas discussed on the forum. A number of the PANDAS kids we see in our practice have big time gut issues, or methylation problems, or ammonia buildup, or celiac issues, nutritional deficiencies, or metals, or other things, that conspire to add up to this threshold effect. My son included. So then add something like strep or lyme on top of that, and the house comes crumbling down.

Hi Kara are you saying that the mycop igG was high? was the igM normal/low? if so, my understanding is that this would imply a past infection, that you have antibodies to the myco but not a current infection / trigger. but i would guess there may be controversy about what that means in our community. is there still some myco in you, that is triggering DD's exacerbation, with a negative igM? does anyone know - does mycop go intracellular? is there a test for mycop substrate/antigen? also it may make sense for you to retest in a month, to see if these are stable numbers for you or actually on the move.

Hi Yes i have definitely heard on this forum, parents express this kind of behavior and reaction to strep, although my child would exhibit more tics and sheer anxiety with flares, also coordination deterioration. ocd not so much but there. Is your son on prophylactic antibiotics and /or immune boosters, especially during the winter months? I don't think these kids are ever "free" of strep, whether it is growing on their throats or embedded in the cells of the basal ganglia, or elsewhere. Good luck this weekend with your children. amy

Have you all seen the movie Under Our Skin, about lyme? It is insightful and gut-wrenching, and does a great job not only telling the lyme story but all the Dr. J heroism. There has been a high concurrance - co-infection rate of Lyme-related infections / PANDAS in the kids we see in our office (northern CA), probably as high as 80%. I'm happy to say that our doc also trained with Dr. J for years, and every summer still goes back for a week or two to work with him. That said, DS has not shown any positive lyme-related testing. I can't help but feel that his pre-disposing immune weakness was related to the celiac.

I am also, an np and we now treating a number of pandas kids in our practice. My MS is in adolescent health and public health. i do alot of writing and have so many ideas for writing/submitting to NP journals, would love to collaborate!! We have a particular point of view as parent and provider that is so into detail and nuance with these kids, and so valuable to share. a blessing and a profound burden as well.

we did lots of ot prior to pandas diagnosis, 2+ years. part for sensory integration but also because his handwriting and overall coordination had gone downhill. we did it indoors in a pediatric ot practice, also on horseback ("hippo" or "equine" therapy) at Parkwood Farms outside of Atlanta, and also something called Outdoor Sensory Adventures, in the Atlanta area. We even did handwriting "camp" one summer. It totally helped. did it help as much as treating the pandas might have?? well, who knows. it probably stopped DS's coordination from going completely down the drain as far as he would have gone without it. And it helped him to bring himself more into the effort. i do believe that as kids grow with pandas it affects how they are wired and if their coordination is suffering from pandas, there may be certain things they will never do, or never learn to do, properly, if at all. plus i imagine that it is somehow ingrained or wired into them as they grow and may continue to affect them structurally. so even as the encephalitis resolves and the big symptoms go away, it seems to me that full recovery may include re-learning how to use their bodies, like re-wiring the circuitry. In this way, OT could be such a valuable tool.

Just my two cents here, i hope you don't mind. I believe that first of all, everyone is different. every child developed pandas for their own body's unique reason, and each has their individual strengths and abilities to overcome it. Sure, some kids with pandas may outgrow it, and maybe even 50%, as suggested in this string. But to suggest that we use that as a global approach to pandas, just see if the child outgrows it, scares me. For some kids, the inflammation begins to damage the basal ganglia cells and may create a chronic lifelong untreatable inflammatory process. if kids just outgrew pandas, we wouldn't all be on this forum. some kids may not even survive to outgrow it, and their suffering as young people and devastation of losing a normal childhood to illness, along with the massive stress on family life, goals and diminishing hope for happiness, well, how good can all that turn out? In our practice, we have the privilege to be currently working with / treating several older children with pandas, who were never treated or never treated fully. By older children, i mean, in their 20s - 22, 25,26, 28 (they are SOMEBODY'S children - and all of them are still living at home with their parents, btw). Granted, these wonderful kids may have had severe cases to start with. But its not pretty. They are suffering daily, and are unable to fulfill the life they had hoped for, up to this point. We do have hopes for them, that we can help. But it has shown me that to just sit by and hope that our kids outgrow it, or to have that be a physician's policy in their practice - well, it may be right for some people, and just not right for everyone. i don't mean to be scary, and i don't mean that our kids won't be happy and healthy. and i certainly don't mean that if you are a child with pandas on this forum that you won't get better or that life won't go your way. Everyone is unique!! and if you're on this forum you are already showing that you are extraordinary!!! i just mean, we have to have our eyes wide open. i would hate to just go along like, oh it will work itself out, and then find out it doesn't and that i missed the window when taking action would have been effective. I already torture myself with how much earlier i shoulda/coulda caught this thing when DS first had symptoms, and how I could have possibly alleviated years of suffering on all of our parts, not to mention probably avoiding bankruptcy and oh, maybe i'd still be married. Sorry to be a downer, maybe i'm just tired.

HI Denise I can't help but think that with pandas there is of course the herx-y stuff from the treatments but also, the inflammation aspect, at the core of the symptoms, right? I always come back to that. Even if it looks like a child is having psychotic-appearing behavior, if its due to pandas then its due to inflammation, not chemistry, right? (NOt that a child obviously can't have both). But anyway it makes me think of doing major anti-inflammatory support. maybe as soon as the ivig starts to cycle out your daughter exhibits these symptoms due to the inflammatory rebound, just like the wearing off of a steroid burst. I would think, cytokine storm. Dr. schweig and i were thinking about this the other day with another child having severe reactions in between treaments. And with my son, that is always the direction I head when he has an increase in symptoms. Pandas is, by definition, inflammation. Does that make sense? Do you have anything you can use / are using for that?

Hello Have you run the Cunningham tests? Those seem to be the most informative as to whether or not there is an autoimmune thing going on (PANDAS / PITAND) vs. straight forward tourette's/ocd.

I'm not sure i have a solution but i'm sure sorry you are having to find one. and i hope he is at least bribe-able. at 16, i guess the days of sticker-charts are long gone.

You monitor it before ivig with blood work that includes a general chemistry with kidney functions (BUN, creatinine, GFR). during the infusions, the child is infused with extra saline to help flush the kidneys during and after ivig. and afterwards, keeping your child well hydrated and just being watchful in case it looks like your child is not producing urine, is pretty much all you can do. its a rare complication, but certainly, aside from serious allergic reaction to the ivig itself during the procedure, the most serious complication.

i just PM'd you. amy

Wilma, did the motrin help?

We have done immune panel work-ups (2x, last one within this month) and my daughters are all in range-I spent all last week trying (again) with my insurance company (HMO) and it is a CLOSED door. We have had grown cultures and blood draws on all the family here to check for carriers. We feel like she has suffered untreated with this for so long- my DH refused to participate in the Yale study- so we are willing to pay cash, we are so worried about our girl. I don't know what else to do. Starting a steroid today. S, good luck with the steroid burst!!

Hi C-Mom i have to think that, if your son has pandas, he for sure doesn't have a "good" immune system, even if the Ig tests come back in the normal range. The definition of pandas is an autoimmune process, so you can at least try coding for that with your insurance. good luck with it.

Hey, i want some "spare time"! Actually, i think its great that at least your family member cared enough to look it up. and i'm totally surprised that pandas is on wikipedia. I wonder who posted it??

It took us a year before we were able to treat my son with ivig. he had already had pandas for at least 4 years by the time he was diagnosed. we went through months of antibiotics and they just didn't help enough, his suffering - our suffering- was profound. It took months for us to pull the funds together, and each day while we were waiting felt like eternity, i can hardly believe we even survived those days. fortunately the ivig has helped tremendously so far. so i just think, that if you are there in your mind, at ivig - just go for it. Especially with everything you've been through with your other kids, you have a feel for it, and just have to trust that.

My understanding is that while Dr. K. does not believe that there is a clinical difference between using 1.5gm/kg or 2gm/kg, and reco's 1.5 as top dose due to minimizing side effects, the 2gm/kg seems to be the reco'd dose especially if there are tics. We did 1.75gm/kg for my son as first dose, he's doing amazingly well, thank heaven. Also, I must put out there that we infuse IVIG in our awesome integrative medical practice in northern CA for the least amount of $$. We use the Gamunex unless there is a reason to use Gammagard (specific concerns about low IgA) and pass on the wholesale price! Also we charge minimal infusion costs for the 2-day infusion, out of simple compassion for the cause!! PM me if you'd like more info. We also have had to pay cash for ivig, i don't know that we ever could have done it if i couldn't buy it wholesale! DS14 is 6feet tall and weighs in at 190lbs - that was 165 grams of IVIG, as in $12,000 just for the meds - wholesale. Unbelievable.

Hi Want to suggest a comprehensive GI panel, something like metametrix 2100, or diagnostex GI, in addition to testing for food allergies and sensitivites (igE/ IgG) through blood. IgE food allergies are inborn. IgG food sensitivities are developed from something usually gone wrong in the intestine, an infection, dysbiosis, immune problem or a gut-based food reaction, like to gluten or dairy. A comprehensive GI panel looks at everything that is growing in the gut, the good and the bad, as well as GI function such as IgA production, inflammation, fermentation, digestive enzymes, antibodies to gluten and you can also test gut-based antibodies to other food groups such as soy, dairy, eggs, and more. Testing IgG food sensitivities without a comprehensive look at what's acutally going on in the gut is missing the boat. food sensitivities like this are in reaction to something creating maldigestion or leaky gut, and its important to find out what that is. so testing for all of it, the GI terrain as well as the individual food allergies and sensitivities, is the best way to go. If you really clear up the gut problem, his digestion will get better and the sensitivities usually clear up! that's a good thing!! i think the alatesse IgG / IgE kit is really good and also inexpensive - under $140 for 120 IgG foods and 30 IgE. I hope this helps. blessings amy

Also, Wilma, be sure and use the motrin with food, especially if you're going to use it for awhile, as one of the main side effects can be GI irritation. that said, there have been times I've given my big DS14 who is 6 feet tall 185 pounds, as much as 600mg one time, and when things were at their worst, i did give him 800mg, one time. perscription strength for motrin (adult size kids) = 800mg tablets. In our office, at times I prescribe this strength for very short windows, like when someone is recovering from a procedure where there is major inflammatory pain involved. the actual rx says take 1-2 tablets every 8 hours for severe pain for a day or two. i don't obviously recommend this high dosage very often, its very specific. but i was not afraid to try it with DS once or twice - and it did help alot when things were at their worst. i decided he qualified for severe pain, it was just his own kind of pain. fortunately things have not gotten that bad for some time, especially since doing ivig in november his tics are better and better and better. but i do use herbal anti=inflammatories when it seems he needs them for a few days, they just feel safer in general.

We need to write a PANDAS textbook.

I'm sure there is someone near you who does this kind of work. I can give you the website of the person we see out here in northern ca, maybe there are some links or you can email him for a referral? i know that the person we see does train other providers to do this. anyway here is his website http://www.cimba-usa.com/ There is no doubt that DS's symptoms had an anxiety component, whether that's what started them or simply made them worse i'm not sure. but this kind of therapy has not only stopped these particular symptoms but is giving him some kind of tools to deal with his body anxiety and worries. we are going to see the therapist today and DS is really looking forward to it.

...and an honorary medical degree...