nevergiveup

Which post said that she said 4 experts treating, she said four docs who "get it" and understand pandas. She was not referring to the docs we think. We are so short sited on this forum. And yes pandas is a spectrum disease in the SC spectrum. NormCal anyone ever tell you low igg3 is a marker for b cell problems, have you ever had a b cell panel done on your child. (Hence immune def or autoimmune issues) And no I am not joking, Dr L is not advertising for our docs, she really doesn't consult with them. Dr K was at the mtg. There are some smart docs out there who get this disease but there hands are tied, due to insurance and professional isolation.

They have done pex, but no one wants to be a pandas doctor. And my guess is even with the white paper, procedures like ivig and pex will only be offered to the most severe cases. I am not saying you can find a pandas doc at these hospitals by calling them. But teams of physicians in children hospitals all around the country have and still do allow for pex and ivig in severe cases. I know of many, yet if you bring your kid in to neurology they always say no they don't treat pandas, but yes they treat unspecified autoimmune disorders associated with chorea and neuropsych sytmptoms, and yes they offer three rounds of ivig for severe sydenhams and mico plasma pneumonia. Even in our local childrens hospital they treated several child in rheumototlogy with severe oCd with ivig and it helped. But if you call those same docs they do not treat pandas, becuz it doesn't exist. This is why they are changing the name, becuz it is taboo.

I believe Dr K and Dr L were the only two of our "forum docs" at the mtg. And no they don't practice in secret. That's ridiculous, docs do treat serious cases, especially mico plasma pneum titers and SC. Every hospital neuro does, they have treated with ivig. They just call it a different name. So in secret, well you decide, pandas is not a disease, insurance doesn't cover it. How can they treat a disease that doesn't exist or is taboo. Sooo they call it autoimmune or SC or high mico titers, or lupus like. They help kids with serious cases. Many neuro's have in all of our major children hospitals.

I have heard Hershey Medical Center has, and several other major institutions on the east hhave. We are kidding ourselves if we don't believe the severe cases are not receiving help.

I have a question for everyone, Hierge said one of the turncoat doc will be naming the new name or one of the turncoat docs will have the disease named after him? I am confused on the first post. And second, I am confident that the four docs, Dr L is referring to are NOT the four we use here on the forum. Dr L deals with more mainstream docs, remember the Chop docs were at the mtg also and other neurologists accross the country treat pandas, they just aren"t advertised all over this forum, they are researchers. Whatever docs she is refferring to, I am sure they have hospital access to PEX since this is one of her treatments of choice, like the chop docs. She deals with this with steroids, PEX, IVIG, ABX, vitamins, tonsillectomies and she offers mri's, blood work, refers patients to research studies, offers ocd consults from the NIH ocd experts, requires cuningham test, etc...... She would be talking about docs whom have similiar treatment protocols and "get" what this disease is about. Sorry but not our docs, offering a one treatment protocol. Of course this is just specualtion, but when I asked her about "turning back of the pages" she said "What are you talking about, never heard of such a thing?"

No but there is a doctor in cinci I have heard of and I think that is kind of close. Dr Wu, he has offered steroids and said would offer ivig if parent wanted. (Bring in NIMH info with you)

Lowering dose, sounds risky if he has a "pretty bad" ear infection. Augmentin is given at this dose for adult size individuals with persistent infection. (4000 mg per day). I would see if it helps the panda symptoms, I am sure just getting rid of the bad ear infection will help the panda symptoms some. If u think it helped go see a pandas expert or have a phone consult and get more abx.

Many kids continue to relapse, Eamom, and I believe each relapse can affect long term prognosis. I would definately try one ivig maybe even two, but if the child continues to decline, treating this as an autoimmune disease makes sense and there are many families whom have seen great success from this protocol. Not to mention an happier child. I again cannot emphasize enough, normal immunologists do not treat autoimmune disease, does your immune doc do bone marrow transplants, work with lupus kids and chemo kids? This is the type of immunologist I am talking about. One more thing, find me ONE infectious disease doc whom agrees panda kids have intracellular strep. These guys are the intracellular strep experts and I cannot find any to agree with this. This is the professionals whom discovered intracellular strep. We talk a whole lot about this on this forum without any legitimacy to this theory. Do you know how common strep throat is, reexposure is inevitable many times a year. The abx have been given to prevent strep and to be antiinflammatory. This intracellular strep stuff is not substantiated by any of our pandas experts. This is an autoimmune disease, and needs to be treated as such. Hence the steroids that work. Hence the relapse and remit course. Not an intracellular strep disease.

Eamom, If the children have high antibodies attacking the body (Cunningham antibrain antibodies) then this is an autoimmune reaction. Triggered by something. Most likely something infectious. Obviously avoiding the infectious trigger will prevent relapse, so long as the body is not chronically producing autoantibodies. In many of these kids they receive high dose ivig, and the cunningham tests go down but then they come back again, even without a strep trigger, maybe now just a viral trigger. Starting to look like more of an autoimmune disease rather than an autoimmune REACTION. One gram per kilo gram is high dose, 1 gram to two grams is high dose ivig. Every 21 days is the standard for ivig for autoimmune disease. Not every 28, this is for immune deficiencies. Immune def's are treated at 500 to 600 mg/kilogram , autoimmune at 1 gram or above. All autoimmune diseases depending on the number of autoantibodies and the disease and each individuals need to look at symptoms to determine dosage. Maintaining trough levels at 600 - 800 for immune def's is sufficent, for autoimmune disease troughs need to be maintained at 1900 more or less. Each child metabolizes the donor antibodies differently, so dosage and frequency need to be monitored. More athletic kids eat up the globins because it is a protein and we do burn it. If the child has lymes I cannot speak on this, ivig may not help. But for high antibrain antibodies it does redirect the autoantibodies. While taking ivig every 21 days, abx is a good idea to rid the body of infection, but if the disease is treated properly with ivig every 21 days improvement should be seen in 3 to 6 months. Trough levels and symptoms need to be evaluated, if symptoms resurface the child may need higher igg levels, hence higher doses. An immunologist will balance the ivig dosage and increase slowly over time to minimize side effects, hence eliminating the turning back of the pages. The ivig if it stimulates the immune system can make symptoms worse short term. (fever) As for studies, examine all the studies for lupus, (neuropsychiatric symptoms only studies, ocd, chorea and depression), cipd, adem, ms etc....... The protocol is the pretty much the same for all. As for studies, only one has been done by swedo with a reduction of symptoms at one year still not 100%, nor has Dr. K gotten 100%. If the autoimmune disease is in a very aggressive state, causing all sorts of organ damage, then the immunologists will start with a 2 gram dose and later switch to 1 gram or higher every 21 days, according to symptoms and side effects. In some cases the ivig can go up to 2 grams each 21 days, like in adem, but not for most autoimmune diseases. If your immunologist will not offer up monthly I can guess there are several reasons for this, one he normally does not treat autoimmune diseases, two insurance will not cover it, and three he is not a pandas expert. Find a b cell expert, rheumotologist immunologist that understands Cunningham antibrain antibodies, they have a much clearer understanding of autoimmune disease and ivig. WE HAVE BEEN SEARCHING on this forum for years for a protocol that works for our kids. What is interesting is for many autoimmune diseases above I mentioned, PEX works too, but the symptom remission usually doesn't last. Again, definately try the one ivig, especially with younger children, and if the child is in crisis, the higher the dose the better. They may go into remisssion, like many do. But for the older child like my dd whom has had three major attacks, I think this new protocol offers more symptom remission and less assault on her brain. Eamom, Most of the families whom had trouble with ivig had lyme. Nancy D daughter, I am not sure her tough levels were sufficient to prevent a relapse, dosge and frequency are not always the same trough levels for each kid, it depends on their metabolism. My dd eats up the globins like crazy, some kids do, therefore one dose fits all make no sense. In the childrens hospital, there are immunologists whom function only in the Bone Marrow, Hemotology, Oncology divisions. My suggestion is find your leading immunologist in the division of your best childrens hospital. (Not allergy immunology division.) These docs turn on off flip around and manipulate the immune system with multiple drugs, b cells drugs, chemo, rituxan, and there safest protocol ivig. Have you ever run a b cell panel on your dd???? Dr. Sleasman in Florida sees overactivation of b cells in some of these kids presenting with ocd. One more peace of the puzzle. Its the politics behind the " pandas" word that limits our kids care, autoimmune disease is what they have. Some have a one time reaction, others have a chronic disease. I find it funny that you ask for studies about this protocol, Dr K had no studies, neither did Dr B, and Dr L only dosed my dd at 1 gram. Studies please.....

For all of the Dr B patients, check your kids trough levels see if they match symptom remission. This means get weekly igg level after ivig for the 10 weeks post ivig. Watch for symptoms returning from your children. This will help u determine what trough level your child needs to redirect antibodies. Then adjust dosing frequency and volume to best minimize side effects. It takes up to six months of ivig to start to see this pattern, initial doses, first dose this should not be done, stary this process around the third dose of ivig. My dd had a clear pattern of symptom remission and resurgence after 9 days of ivig each month.

Eamom, There are several children on this forum receiving one gram per Kilogram, every 21 days and all are seeing improvement. I would like to point out that autoimmune doses of ivig used for lupus, ms, cipd, and autism, done by the leading immunologists in this country looks at igg trough levels and symptoms. Some kids have symptom remission at 1700 some at 1900 some 2000. Keeping the igg trough levels consistently at a an autoimmune level keeps autoimmune symptoms gone. The real half life of ivig is 21 days, according numerous studies done by our Bone Marrow Transplant Division at our childrens hospital. I know swedo and Dr K do one dose high, and Dr B does high every 8 weeks but some kids don't have an infection anymore, and have a chronic state of making antibodies and need to be treated as such. Melanie, can chime in if she wants, I know her doc has success stories too. Swedo and Dr K and Dr L talk about their success with the younger children, not as much success with older or more chronic children. Many on this forum know of only the one dose or intermittent dose theory, I think the autoimmune dose like for adem or lupus makes sense, and I know of four children whom after getting their trough levels up to the right levels, saw complete symptom remission(for 8 years plus), some are now in college. If you want a comparison disease its like guillion barre, first attack needs PEX or one ivig. Second third attack, disease is chronic and then igg levels need to be maintained at 2000 to see symptom remission. One thing is for sure, we need the immunologists and rheumotologists talking with the Cunningham becuz I believe that one ivig may work, but if not this disease needs to be treated like a chronic autoimmune disorder.

Oh yes, and Tanya Murphy, definately another Women devoted to our kids, she is also so impressive. What I like about Tanya is she tries to really look for physical issues, like infection and immune deficiencies and other viruses that trigger neuropsych symptoms or autoimmune disease. Thanks didn't mean to leave her out.

Dr L is amazing, I agree. She with swedo, cunningham, diana, mary hornig, what would we do without these women fighting for our children. Dr L once said to me, you can tell a pandas child just by the look in the mothers eyes. Not too scientific, but true. They truly are pioneers. I do not want to leave leckman out, I just wanted to talk about the women!!! Ok sooooo, can I speculate, does this mean Leckman may be part of the new name? If u have a child that has tics and ocd definately dig deeper, go see a pandas expert.

Vicki, The strain of pertussis that is running around the US right now is not the same strain in the vaccination. The current vaccine is useless in preventing the current strain. Even with the 6th DTP added to vaccine protocol, they have not seen a reduction in pertussis. They will need to come out with a new vaccine, like they do with the flu shot, since the pertussis strain has evolved. So vaccination will not help, and may hurt. We need to know what we are vaccinating for before we give these shots to our kids, why vaccinate if it doesn"t prevent the illness. Contact mayo clinic vaccine dept for more info.

Identical to my dd. She gained 5 lbs in one month, eating so fast and furious and always hungry. This happened when we switched her from gluten free back to normal diet. She said that she was worried she would stop eating and had fears of anorexia at this time so she shuffled down her food as fast as possible. I believe the fast eating and eating a lot can be some type of fear. It was my dd"s fear of going off the gluten free diet at the time and fear it would make her sick. Now two months into the regular diet she is eating slowly and not overeating. At the time of the overeating and fast eating she was also very preoccupied with what each meal would be each day and what time we were eating. This has also stopped now. But man did she eat alot. She only wieghed 80 lbs so 5 lbs in four weeks was quite noticeable. I am now very careful to make sure she is eating low calorie healthly food and slowing down during meals. I think it is so important to recognize the ocd stuff as early as possible to help prevent it from becoming a long term issue. If my husband and I recognize my dd"s latest ocd issue early enough we can help by slowly exposing her to her fears and help her understand it is an irrational fear. However if she is in the midst of a very severe pandas attack this type of "exposure therapy" does not work, only works during "good" times. The key is catching it early, for us we now recognize her MO, she will lie or say she doesn"t feel good to get away from her fear. So we are very alert now when we see this excuse coming up.

Wow, my dd misssed half of last year, becuz we took her out for flu season. I am insisting she attend everyday of school now that she can, I have even fought hard to get ivig on Friday evenings so she never misseS A DAY. Missing school is so hard on my dd and socially its a disaster. IT IS TRULY A STRUGGLE THIS ILLNESS.

Emerson, I agree with your posts if we were talking politics, fashion, interior design, career planning, etc....... we are talking about a little boy, a very impressive little boy at that, whom may get additional help if the mother does not assume that Duke has all the answers. Which we all here on the forum ALREADY know. We are mothers first, and any child sufferring needs our help. So additional opinions are great, who knows if this open dialog may result in further investigation. (hint Cunnigham Test) We are all working to help not just our own children but all the children whom may be sufferring from Pandas. All opinions are valid, and we are all second guessing everyday and looking for answers. I am sure Jaylonsmom wouldn"t want it any other way.

Good luck! When you did tough levels what is his lowest igg level, taken day of next ivig????

Pamsboy, My dd's first ivig which was one gram per kilogram, helped about 9 days then strange unseen symptoms started to happen. But we retested her antibrain antibodies and they began to increase so we have now done 11 ivigs at about your sons dose. We did not see great imrpovement until the third dose or so. Cannot say that the low dose causes symptoms, rather alleviates them temporarily, she starts feeling bad again right before her next dose. Did you have the igenex test? Some of the kids whom did not do well on monthly ivig had lymes. Which ivig will not help. So hopefully as the parents from this forum answer your question they will identify themselves if their child has lyme so as not confuse you. My immunologists says you need to give it 6 months, however she also says that in order for ivig to help autoimmune diseases the child must maintain an igg level of around 1700. Very high. But the side effects of ivig seem to make the pandas symptoms worse, so we are on a gradual increase of gammagard over the next 6 months to reach the 1700 iggs consistently, and she receives ivig every 21 days. Her lowest level is about 1200 IGG'S during the third week. But if she gets a fever, neck ache headache from the infusion her pandas symptoms flair big time, so its a balance. The inflammatory part of ivig is the first few days when you produce a fever and the lining of your brain inflames(asceptic meningistis). Slow infusions help reduce this. Plus a gradual increase in dosage does too.

Paul, Look foward to seeing the website. Please do not be offended, on this forum we are all searching and helping. Pandas science continues to evolve daily as we speak. None of us will ever stop searching for new info and answers for our children, and it sounds like Jaylen's mom wouldn't either. Love to have her on to converse, many moms wonder whether their kids have ts or pandas on this forum. THanks for the website update! Hi Folks, I don't normally get involved in these kind of conversations but I skimmed across the posts and thought I would offer a little information for you. Firstly, I am Paul. I am a co-founder of Jaylens Challenge. Jaylen being the person you referred to as the 10yr old boy speaking out against bullying on the show. You made a point about questioning whether Jaylens mother Robin had ever thought about testing him for infection. Now think about it. If you had a 10yr old boy who from the age of 2yrs had been diagnosed - do you not think that you would have exhausted every single avenue in a bid to give your child some form of normality in life before reverting to a natural approach? Of course you would. However, it is not my job to speak on behalf of Robin as I know she will be keen to answer any questions you may have herself so I have invited her along. In the meantime, if you want to head over to www.jaylenschallenge.org and read more about Jaylen and his campaign to educate people about bullying then you are more than welcome. Even better, why not register and join the forum there and you can ask questions directly to Jaylen himself. He loves nothing more than to help people understand. Thanks for listening folks.

Omnicef always worked the best for my dd, give highest dose possible for weight. Murphy likes augmentin also, says both help with tics. Omnicef seems to make the kids a little crabby, according to Murphy. quote name='airial95' timestamp='1284595813' post='84425'] We just started 30 days of omnicef through Dr Murphy. I know it's her abx of choice and the one most of her research has been focused on. We had been on azith for 9 months and were somewhat successful, but he got strep 2x in 2 months on the azith so she wanted to change it up. We're not quite a week in..so I don't have a whole lot to report yet...

Make sure she drinks a lot of water tonight and tommorrow and over the next several days, lots and lots helps a lot with side effects. I even have woken my child up at night to give her fluids if ivig finishes late in evening.

Jaylen's Mom, I hope u are going to return to our site, after this post and give us some Q and A if u have time? I saw the previews of the show and ur son is an amazing child fighting against bullying. I can only imagine how emotional it must be for u to see him reach out and create change in this world. I am sure you have fought as hard as all of the parents on this forum for your son. I just want to clear up a couple of things, one PANDAS is an autoimmune condition and is also inherited, TS tends to start around 7 and pandas is usually started at a much younger age. Pandas waxes and wanes, many pandas kids have a kick ###### strong immune system, many pandas kids do not have strep titers, any infection can cause the trigger, pandas children have high Cam Kinase from Madeline Cunninghams Sydehams Chorea study and many with severe movement disorders have highly elevated AntiDopamine2 antibodies, this is where the body is overproducing antidopamine antibodies and they are disregulating dopamine causing all kinds of mood, movement psychiatric disorders. I am sure you have amazing docs, but TS is not a disease rather a group of symtoms and its cause is still unknown, however even the best docs speculate dopamine is involved. Yale recently found in autopsies that the TS patients have inflammation in their brains, leading one to believe this may be neuroimmune. I am glad u are so familiar with the TS science, I just wanted to get u up to date on the Pandas science, which someday may be one and the same. Your son is a hero, I feel he is an inspiration for all of our families. Thank you so much for coming here to post and I hope you will continue to visit, we can all learn a lot from each other! quote name='JaylensMom' timestamp='1284604387' post='84476'] Hello all on this Forum. I am Jaylens mom who was one of the subjects in "Tourette's Uncovered". By the way, its replaying right now as well as 3 more time in the week. I definitely recommend you all to watch it again as some of you are saying things about the show that are not true or maybe you missed some parts to the show. I have several people and several issues to address here. I must say though, the young girl here at 14 years old is much brighter beyond her years. For Airial95 and Fuelforall - Michael, who said that we didn't test for PANDAS? As the show stated, my son started with symptoms at age 2 and received a diagnosis at age 3. He just turned 10 so, that puts me at dealing with this for 8 years. I have a very good Neurologist and NeuroPhsycologist. We utilize the best of the best doctors from Duke University as well. My son has been tested for EVERYTHING under the sun. From Wilsons Disease, infections, Lyme, etc...His copper levels and mercury levels have been checked (which are high). Regardless of what people say here, this show is NOT A NEW SERIES! It was ONE time show that is re-airing. For them to explain my sons whole life history to you and everything we've been through would have taken a 10 hour documentary. They really just don't have the time. We've also done specific Strep titers. All negative. We are aware that Strep can increase tics by a thousand times...so anyone near him with strep, he automatically gets a round of antibiotics. The kids in this show are not the MOST SEVERE. As the14 year old young lady here stated to you, that is the nature of Tourette's and tics. The first boy Jonah was severe, but the 3 other boys were not. As a matter of fact, Colin, the last boy only has one tic - the shaking of his head. That's not severe at all. I think the show did a great job at showing you the different ways in which Tourettes can manifest itself. As for Jonah, he ABSOLUTELY needed the DBS surgery. His quality of life was severely compromised. The show stopped filming in July. That young man Jonah is tic free today. As far as the rage, thankfully I do not have to deal with that. When that Defiant Disorder comes with Tourette's, it's called ODD. Tourettes mainly comes with ADHD, ADD, ODD, but most commonly OCD - which is what we deal with. Tourette's is a neurological disorder...OCD is also neurological. My son however, does have sensory and textures issues as well, but that is due to his ASPERGER's part of him. Whoever stated that why do they just have one doctor on the show was incorrect. There were a total of 3 Neurologist on the show, including my own. Do you remember seeing me talk to her..she was doctor of another nationality, Dr. Qureshi. Dr. Albright was on also. WE don't just let our MD's or pediatricians throw us a diagnosis and thats it. Yes, I'm the mother that deals with things more naturally. I have a total of about 40 supplements for my son, I control his diet, sugar, I use a chiropractor (who also has acupuncture), massage therapy, wears an EMF bracelet, etc... AGAIN, they simply don't have enough time to tell you all of this. But you have to think of this... I love my child like you love yours, why would I not do everything in my power to give him rest from the 24/7 ticcing? MEDICATION did not work for him! He weighs only 60 pounds and is not eligible for many meds, but the one's we did try, came with horrible side effects and didn't really work. If he becomes harmful to himself, I will use meds, but right now, he's a "twitchy boy" who is otherwise healthy. Why in the world would I use a drug on him that causes heart defects? He can twitch all day long but at the end of the day, if he died of heart failure,I would never forgive myself. Here's the bottom line though. THERE IS NO CURE FOR TOURETTE SYNDROME! If there was, I would have done it! What I do holistically is to try to manage the tics the best I can. Seriously though, whats the difference if you tic 5,000 times a day or 4,500? Even the DBS surgery isn't a cure. Its a temporary fix until that boy goes through puberty and it subsides (as it usually does around 19 years old). Lastly, some combination meds do work if they meet the weight requirements. Marques from the show takes meds to keep him from swearing (which by the way only affects 10% of Touretters) and it works. Bottom line, tics wax and wane. This wasn't a shock video. The only shocker was Jonah and he was really THAT bad. His parents made a wise choice for him. Nothing was scripted for ratings. These are our daily lives and most people with Tourettes we are getting feedback from, thought it did a great job at showing the true nature of TS. My son wasn't ticcing bad all the time. When they came back (when he was speaking to the school), he was on a wane period and not ticcing too much. We chose to open up our lives to all of you in order to educate, no one was paid, it would be nice if you would try to open your mind instead of bash these kids' parents. Here's a tidbit also: with PANDAS mostly the tics do go away. When it is inherited TS....most likely doesn't. Also, they showed boys because Touretttes is 3 times more higher in boys and 75% worse than girls. With most girls, it isn't a true inherited case. As for me, OCD was inherited and not from any infections. I am sure my son received the OCD from me which I received from my dad. My son is NEVER sick. Doesn't even catch colds and has a very high immune system (the best I've seen). Sorry for the soap box, but as a parent who has utilized ALL options and taken ALL routes, and has spent years researching, I feel its my duty to educate people who would like to know more. There is no reason to be scared for the newbies. I often donate time to different charities, and when I see parents with children that are parapalegics, I look into their eyes and I know that at any given moment, they would trade their childs condition for my childs condition in a quick second! Jaylens anti-bullying website does have some facts about Tourette Syndrome there, but also has other definitions and disorders listed as well INCLUDING PANDAS. Our goal is united. No matter what you have, even if you have nothing, there is never a reason for bullying! Every child deserves to be treated with respect and dignity. So I leave you with "Bullying No Way!" Robin www.JaylensChallenge.Org

Stephanie, Take the Insell article from the NIMH into ur therapist, the cunningham results etc... I would hate to think that u r are looking for help from a therapist whom does not understand pandas and what the illness is like. And then if u can wait 10 yrs, go see Emerson, she said today that she wanted to be a psychologist someday. Maybe someday we can all go the Emerson!

When is her next ivig?? I would be so mad! How can they do that? I think I would just bring up the words "law-suit" or "malpractice" and see what kind of reaction I get I think leaving someone with positive bloodwork untreated over the weekend is criminal! I know you didn't ask for advise, but I would insist. Oh, no, no, the labs were only ordered to check liver and kidney function and to rule out thyroid problems- to make sure it would be safe to use the rx. She did not have positive labs for illness (actually the opposite). Since we are on IVIG every 4 weeks+ zithromax, its really not possible to get reliable "check for disease" labs. And really, I so appreciate that her pediatrician has been so willing to do what it takes to treat her (even though his colleagues do not approve) I would never, ever sue or even threaten to sue.