amyjoy

HI CINDY I have 2 kits in my office, if you'd like i'd be more than happy to send one to you. They were having some equipment problems the past couple of weeks, in the lab, so it slowed everything down. But Kathy already had sent me these kits, so just let me know if you want it.

i do believe that gaba may help (may) since everyone is different, but my understanding is that most often taking a gaba supplement does not cross b/b barrier, as the gaba in the supplement has to go through digestive system etc. however, L-theanine an amino acid can convert into gaba, and we use something quite often but i can't remember the exact name of the product right now, but it is a lozenge that tastes good, it has the theanine and a couple of things that work with and my son loves it. i think it is made by a company called Natural Factors. hope that helps. oh also, we use a tincture by a company called Vogel, an herbal tincture for anxiety that has valerian and hops, and i think passaflora. this also works pretty well for his anxiety on the nights when my son's tics are most active.

PhillyPA that is very smart of you, you must be getting some sleep these days to have such a good head left on your shoulders?? Thanks for voice of sanity.

OK so i am contacting our insurance advocate who filed with anthem blue cross of california for ivig for my ds and we were denied, appeal verbally denied, referred to ccs and then also denied by them, but we did not use those diagnostic codes. we will refile on monday and i will let you know what happens. we are currently having to fund raise for a treatment, and i'm so so angry. we have raised around $2000 so far, and because my son is 14 and 6ft1, plus has tics and needs the 2gm/kg dose, we are at $12,436 wholesale cost ($72/gm)for one stinking dose of gamunex. because i wear the dual hat of pandas mom and provider, as we treat PANDAS with ivig in my office, i can order it literally wholesale and not have even a single infusion cost and still be totally overwhelmed with over $12,000 per dose. i am soooooo angry right now i can just scream!!!!!!! in fact last night i was so angry about it i slammed my oven door (while making of course gluten free bread for my ds who also has celiac) and slammed it so hard i broke the hinge. I hate being caught in this corporate game while my ds suffers day in and day out. ugggggh!

...ours did the same thing, the exact same thing, early on. it ended up being a blessing because the person i took him to is amazing and fully pursued my son's true diagnosis, workup and treatment, and ended up starting a lower-cost IVIG treatment center for kids in his office, which is going to contribute to PANDAS kids in the long run - and the short run. so hopefully, something better will come this as well. living in a teeny town, unless they are all pandas savvy, either leaves you educating them like crazy, or travelling for care. I do have 3 excellent friends who live in Colorado, one in Aurora and 2 in the Boulder area - i would be happy to ask them if they happen to know any pediatrician forward thinking enough to understand / treat pandas, if you'd like. also many many years ago when i lived in colorado i worked in peds at U of CO health sciences center in Denver. Would that be worth going to? I know here in Northern CA, going to UCSF, the closest real medical hub, is useless when it comes to understanding / treating PANDAS. good luck.

Just sending you lots of blessings and mama juju for the journey!!! And just a question- are you using the Gammagard because it is low IgA?

I can tell you what has helped my son's tics tremendously since the terrible rebound from steroid burst, they were the worst they had been in so long when the pred wore off and i was terrified. we do all of them every day, i can't tell you the difference since the minute we started. he is also 14, 6ft1 and neraly 200 lbs. Avipaxin - anti-cytokine in the brain supplement - 2 in the am only 9from neuroscience) inflamaway from natura - 2 twice a day Myo-calm from metagenics 3 in the evening mag glysinate - 600mg and the last thing we added has so helped, a chinese herbal formula reco'd by the herbal person in Dr. S's office called "Coptis Purge Heat". we are in the process of raising the funds for DS's IVIG, in the meantime, i think this combo is helping more than anything we've ever tried, although he still finds his way into the motrin bottle, that does also help at night but i'm so trying to get him out of that habit, i know its not good, but the tics are just relentless aren't they??? i hate them!!!!!

Hi There This may be a bit simplistic in my understanding, but i believe that the activity of the antibodies (the binding of the antibodies to the ganglia cells) is the direct cause of the cam Kinase elevation, or activation. So the antibodies could have been and probably were elevated in the past if the cam kinase is high, and may be again in the future.

Hi Cindy I PM'd you Dr. Cunningham's lab contact info to order a kit. We also have a few in our office if you want i'll send you. amy

Hello! my son has also had glutathione, had low levels as well as methylation problems, which are greatly aided by B6/B12/Folate (especially in the methyl forms). glutathione and methylation assist in core pathways that chemicals can travel through the liver to be broken down, including ammonia that can build up and create anxiety and other neuro issues. in our office, we do infuse glutathione IV (push using a syringe) and its not very expensive and take 10 minutes. its also possible to use glutathione in an oral powder form or even a spray. some kinds of oral glutathione are not absorbed well, some are at least decent and so can be useful if IV access is hard, or cost prohibitive. also, like nancy d was saying, NAC (orally) can help the liver produce glutatione, it is a precurser, and so is lipoic acid. it helps if the child has lots of b vitamins and minerals in them as well, to help the liver pathways. I'd be happy to share any information about this. good luck out there. amy

HI i just called neuroscience to find out, and they said no, your child can be on antibiotics when they test. Good luck with it.

Just a thought about Lyme testing... My son's pediatrician who diagnosed PANDAS is also a big lyme person, and he has recently moved from using only the IGENIX western blot for years, to the NeuroScience western blot + immuno and cytokine assessment. if you are interested here is the link for it, and according to Neuroscience, insurance does mostly cover this test. https://www.neurorelief.com/index.php?option=com_content&task=view&id=604 in case this helps.

Its something to ask the doctors that do lots of ivig (or if amyjoy is reading this - ask the ivig suppliers - they would probably know more)- is it possible to overhydrate if kid is already really hydrated and then we push iv fluids into them on top of it? And, if so, what does that look like (nausea, headaches, voimiting...)? (as it does with runners that over hydrate?) Hi there, my understanding is that the extra saline that is given with the IVIG helps the IVIG disperse, through an appropriate blood volume. If a child comes in well hydrated, just the act of putting all of that extra globulin protein into their little blood stream would require extra fluid, which literally expands their blood volume. This is one of the reasons we constantly check blood pressure during the IVIG infusion. For most of us, its too hard to drink sooo much water as to cause a super dilution of the blood. 90% of the people i see in my practice have mostly signs of dryness. When people get really puffy, from too much fluid on board, most often the problem is that the fluid is in the wrong place, its in the extracellular compartments instead of inside the cells or blood stream. This can be a fluid shift from an imbalance in electrolytes or proteins, or other issues such as heart, liver or kidney, or sometimes, toxicity or inflammation in the tissues. Everyone is a little different. in adult medicine, we talk about optimal as drinking as much as half a person's body weight in ounces, so that a 130 pound mama would ideally drink 65 ounces of water per day. That's alot of water. All of that said, it would be hard to overhydrate our kids post ivig, a small glass every hour with a bit of seasalt, or a little sports electrolyte drink, or even some watered down juice with a few granules of salt, will only help things to wash through. but many just don't feel like drinking anyway. does that help? amy

Hello My understanding is that the Gamunex is the most rigorously screened cleaned and tested of all the ivig on the market and this is why Gamunex is the recommended product. I have spoken with the gamunex rep in our medical office (she sells it to us for a wholesale price of $72/gram which i'm told is THE cheapest....is that the case?) But anyway, i'm going to ask her this question, about the viruses and post her response for you. amy

OK here is our sleep arsenal for exacerbations as my DS' tics can get so bad at night he (we) cannot sleep at all. Magnesium citrate powder "natural calm" can get in health food store, super helps. Inflamaway by Natura health products in am and pm, helps reduce the inflammatory thing so that my son doesn't run off and pour himself a handful on motrin in the middle of the night. Tranquil Sleep by Natural Factors And something we recently added but i don't know if its right for your child, but our pediatrician's office also has acupuncture /chinese herbalist and she put my son on this "coptis purge fire" and it has helped not only with his sleep and tics but with his skin rashes as well, just in the past few days, as he was coming off of a steroid burst and having so many rebound tics and sleep problems. When i looked up the coptis formula it says it is specific for infections like strep in the throat head sinus etc. Anyway i hope this gives you some ideas, and good luck. amy

HI Lisa I know how each day feels like forever....and, day 2 is not long enough necessarily to see the result for either the antibiotic or the steroid burst. It can take days to weeks potentially, to see a change with the antibiotics, and days for the steroids to kick in depending up the level of inflammation your child is experiencing. But if the steroids are doing to help, you will see it soon. It may start with just a little window of reduced symptoms, that grows over the days, or, a sudden and persistent change that lasts awhile. For my son, it took until day 3 to see a reduction in tics, but then it was only during the day and the nights were bad, but then by like day 6, the tics went practically away for like 2 weeks, and then slowly returned at night again but they were pretty bad, so we did lots of natural anti-inflammatory stuff to help him per his MD and they seem to helping while we are working to raise the money we need for his first IVIG treatment. Anyway, each child is different, and all i can say is, hang in there Lisa. You're a great mom and you're doing everything you know to do. Please update on the progress of your child. Many Blessings amy

Emerson, i think you are max cool, way cool, cooler than you can ever imagine yourself to be, until maybe one day when you are well, you will look back and go wow, look what I did, look what i got through, and maybe you will see yourself through the same compassionate eyes i'm sure you bring to others. I bet you are an awesome friend and just the exact kind of person i would be friends with if i was 15 and lived by you...kinda quirky, smart, definitely unique, infinitely looking to understand more, dealing with more than you should ever have to at your age in a way that makes you very deep. I'm sure you have amazing things in your future that you will contribute to this world in a way no one else can. I honor you and applaud and respect you and more than anything, wish i could be in a position to do something more to help you. But meanwhile, please know I completely and totally believe in you. with love amy ps did you get a thermos??

Gosh, got a letter yesterday from our insurance Anthem BC, saying they are referring us back to California Children's Services for my DS IVIG, which were the ones who referred us to Anthem in the first place as he does not qualify for services under CCS. Another circle and delay. Unfortunately my DS happened to be the one opening the letter as he saw it was from BC and he knows we are waiting for an OK from them since every single day he says mom when am i getting my IVIG and i say soon, sweetest darling child i'm working on it. So he sat on the floor in the kitchen and sobbed and said "why doesn't anyone love me enough to help me?" i felt like dying on the spot. i am a single mom, have spent my entire life savings on his care these 5-6 years, and now that we have a diagnosis and even a treatment we no longer have the funds. This is just wrong, it is wrong. I have done everything i know to raise enough $ but our credit isn't good enough anymore to borrow it. So my DS said that he / we must write a letter to my ex-inlaws, his grandparents and aunt and uncles, all of means but who have not been willing to help us becuase i think they are angry at my son's dad for leaving us, to ask them if we can borrow the money. His plan is to write the letter when he gets back from school today, to remind them that "love is a verb". Meanwhile i did talk with anthem this morning and the person managing my DS case was very kind and understanding that we've been turned down twice already for CCS but thinks we still have to go through the process. But it did sound like she was going to go to bat for us. Its like, life just stops for these moments. I want to cure my son, your children, all of our children my DS. Once we get him treated, i'm going to start a treatment fund for all of our children and take it to the highest possible levels, i want to rock this lazy crazy dollar driven world...I guess i sound pretty angry right now, and I am, and thank you i know someone out there will understand and help me feel less crazy and less alone. amy

Thank heaven you had those resources to treat your child!! And I hope, successfully. We are anxiously awaiting info from our insurance company, we coded for sydenham's chorea, after hearing that any diagnosis of PANDAS or strep related encephalitis may be a red flag. and since my son primarily has tics, we figured its probably an accurate diagnosis as well. I wish you luck and would be interested in any update - hopefully a good news update! amy

Dr. Sunjya Schweig at Hill Park Medical Center in Petaluma CA (a little north of San Francisco) is a functional medicine pediatrician and diagnosed my son with PANDAS last year (as well as celiac and a whole bunch of nutritional issues related to leaky gut). His office is doing IVIG infusions as per Dr K's protocol, and they are very kind and progressive and seem more affordable as well, an extra benefit.

just wanted to say that, regarding doing the high dose IVIG treatment over 2 days instead of a single day, part of the reason is that the IVIG is a protein that drastically expands the blood volume. This is one of the reasons its important to do vitals signs and check blood pressure throughout the infusion. To use the recommended dose which is typically 1.5 grams per kg, that's alot of added fluid volume directly into our child's bloodstream and it wouldn't be safe to do it all in a single day. hope that helps a little. amy

Hello, i'm sorry it was turned down and how stressful that is....and, i would love to know a couple of things, if you don't mind, like, what diagnostic codes you used? its so interesting that it was turned down due to out of network, not diagnosis or other actual billing codes. or maybe, knowing insurance, if you had gone innetwork they would have found some other reason to turn down, right?? but anyway, anything else you can share about your claim would be very helpful. And meanwhile, i hope your child is doing really well and may not require a second treatment:) thank you for your reply. amy