nevergiveup

If ur child has a reduction in brain antibodies from the cunningham test pre and post steroids u can feel a little better that the antibodies are reduced and he could still be suffereing residual symptoms (brain inflammation) that will heal or be relearned later. If they are still high, I would talk with ur doc about what is next. i am sorry to possibly hijack this thread too.. but i need to hear this if it true..ds has had 3 attacks a year from 3-8 1/2 that's roughly 15attacks..and then this one 1 1/2 years ago..he is 10 1/2...OMG..my poor boy... So even though he is so much better than before the taper which ended 38days ago...he is not 100%...i think i could say a solid 80....so do i still procede with the bigs guns... can i still see some healing from the taper....i will say that i can see that ibuprofren does help now...before he was too far gone for it to have any effect...his system, has calmed to were these thing might help.... doc l gave me the impression that the steriod could continue to do work well after it was done..she inclinated 6 months maybe a year....is that realistic...or maybe more like 3 months..seems plausible should i do another taper..as we have slipped some from our best point, about 3 1/2 weeks ago... to get his brain uninflamed and try to control from there..instead of trying to keep quieting it from 15-20% out. include the fact that he was pretty severe..so maybe he needed more than a 4 week taper..5 may have been more the order considering his severity.....does that make sense...i mean if he were in moderate state at the start of the taper,maybe we could have had complete success sooner in and longer lasting is there anything that anyone has experienced that is similar...maybe someone has done this... it may only be a theory, but that is how science starts...and maybe makes sense..just like when an abx isn't working and you have to get another round??

Grace, Don't loose hope, just becuz there may be some brain damage, it does not mean that it is not tolerable. Many people with brain lesions relearn behavior, retrain muscles etc..... The brain can be damaged and compensate in other ways. Many people have brain lesions with minimal residual symptoms. It can take years of retraining the brain but there are so many success stories from strokes, lupus, head trauma, MS where their mri's show damage but no symptoms are evident. My sis had part of her brain removed (now thats brain damage) when she had a tumor removed. Took several years but her brain compensated and she is 100%. I mean 100%. Preventing future attacks and quick treatments during an attack are the best we can do to prevent further issues and help our children heal!!!! I just do not think we should ever give the impression that this is a self limiting disease as my neurologist once told me. If we truly believe that this illness does not cause brain damage and does resolve with no side effects, then we are further justifying treating the symptoms only and ignoring the cause. Treatments like PEX adn IVIG are expensive and have risks and should not be offered to children whom have a self limiting disease with no potential for long term damage. It clearly is not self limiting for all and quick treatment is necessary and should be expected for our children to prevent brain damage.

Worried Dad, Swedo has a video online that shows this exactly, it was her autism video, I believe she did in San diego several years ago explaining her original pandas study. She had an adolescent boy with MRI inflammtion, very evident basal ganglia inflammtion and he had lots of symptoms, he had PEX and the antibodies removed and the next MRI showed a large reduction in inflammation but he saw minimal symptom resolution. He actually had symptoms reappear with no inflammation later. No antibodies, no inflammtion but still symptoms. This is why so many parents have fought so hard on this forum to advocate treatment ASAP for our children. Because we do not know exactly what is happening, but with MRI evident basal ganglia inflammation, this was a very severe case and symptoms did not improve with reduction of inflammtion and removal of antibodies.

Didn't u ask the question????? I gave my docs opinion. There are kids with low cunningham test and still have tics. Sometimes tics never go away. Our kids brains are developing, any inflammation can cause permanent damage. Ever hear of head hit syndrome. I think we are kidding ourselves to believe with each assault on our childrens brain, there is not the potential for damage. No doc can clearly tell u. One thing for sure though, is the brain can regrow neurons or compensate in other areas. This becomes less likely the older we get. Hence why younger children do better with symptom resolution. I do believe brain damage is possible with any inflammation in the brain. In MS and stroke the inflammation causes paralysis and other symptoms. However with time as the inflammation reduces many symptoms reduce, sometime go completely away. But NOT in all cases do symptoms completely resolve. (MS/stroke) I think we are being completely unrealistic to think any assault on the brain cannot cause some damage. As much as I respect Dr. Cunningham, I believe a neurologist is best to answer this question. What are you researching, brain inflammation or PANDAS? No one has ever done a study on this for PANDAS. In some children, (Leckman) (pandas & ts) they see parts of the brain enlarged (caudate), these kids seem to have a more symptoms that never remiss. Also many children(PANDAS) are coded as an autoimmune encephaltis to receive treatment for PEX, and yes in an autoimmune encephalytis brain damage is possible. We cannot call this an autoimune encephalytis and ignore the fact that it could cause brain damage. I know it is not what we want to think, but quick treatment of brain inflammation is crucial to prevent brain damage. We can agree to disagree if u want. Did u want all the responses to say what u wanted to hear? The more that I've researched, I have to disagree with you and agree more with the above answers. Where are you basing your information from? The inflammation causes the tics and OCD. If the inflammation caused permanent damage, then the treatments such as steroids, IVIG, and plasmapheresis would not put PANDAS symptoms back into remission. Perhaps the same dosage of IVIG may not be as effective in adults as in children but that doesn't mean that another treatment such as pulse steroids or plasmapheresis would have the same results. I thought the reason why long residual symptoms occur has to do with weakness within the blood brain barrier and that kids with PANDAS always have a low level of antibodies being produced against their brain because they have a resistant form of strep hiding somewhere in their body. Cunninghams test shows evidence of these antibodies.

Can only speak on my generic, its scored and can be halfed. Clav acid on top and amox on botton, can see when u cut it. Not sure what ur confusion is. Does it really matter if they get 70 mg twice a day or 62 or 75 not a big concern. However, 250 mg is a lot more than the XR. XR is not scored and they say should not be cut. But again, I don't see it as a big issue, except for XR the clav is soooo low, may want to make sure u get enough of it. Each kid is different, so docs and parents need to look at side effects and what works best. Not to mention weight. Try the aug on ur dd, do the 875, since she does not weigh enough for the XR. See if it is too much clav acid. And u can evaluate from there. Also wondering if u have done another Cunningham test since ur last ivig? I do not believe that the abx stop an autoimmune disease that is set on autodrive. Can reduce symptoms, by alterring dopamine, and antiinflammatory effects and reduce future infections while ur child stops making the autoantibodies. It can take up to a year for B cells to alter their memory. After years on high dose abx, I think the intracellular strep should be resolved, assuming titers are reduced. I cannot find one infectious disease doc to back any of this intracellular strep in panda kids. They actually have been one of our biggest naysayers. tLymes is a whole different issue and that does need abx. Immunologists get this illness, because it is autoimmune. Autoimmune diseases are triggered by infections. Many pediatric autoimmune diseases resolve as the immune system matures. Prevent reexposure to the trigger is critical. Augmentin and zith reduce inflammation and prevent a huge immune response if re exposed to strep. Now we find out Clav acid alters dopamine and serotonin. (Like haldrol, ssri etc..) Reducing symptoms again until immune system resolves it autodrive. Some kids like my dd, have a chronic autoimmune disease, she does not stop producing the autoantibodies, and does not produce the good ones(has an immune deficiency) So for her, she needs regular immune modulation to redirect the autoantibodies. Immune Deficiencies do not always show up in blood markers until preteen years. Doesn"t mean they haven't always had the immune deficiency, just cannot see it in IGG levels till later childhood. Another thing that could be of concern is PTSD, we have it, we forget our kids may have it also after all they have been through. If the cunningham test show no antibodies, it could just be residual stress related symptoms. Thats what we feel we may be dealing with my dd. She likes to stay close to home, has me concerned but this is a sign of PTSD and many cancer and even diabetes kids are well documented with PTSD. I am very concerned lately about the Lymes that has expanded our forum, with some of our most helpful advocates SFMom, LaurenJohnsonsmom, etc.... it has left me confused and concerned. Is this Lymes and co infections or an autoimmune disease triggered by a viralent strep strain or both. Swedo does not talk about intracellular strep, does Dr. K? So much to think about, test for etc..... We are all still searching. Okay, sorry, still confused. (Plus, I thought you said you recently switched to Aug. 875mg 2x daily?) You say Amoxi 250mg (or 500mg) 1/2 tablet 2x daily plus some Azith. (where is the Clav. coming in here?) or Do you mean 1/2 of an Augmentin 250mg (or 500mg) 2x daily plus some Azith. THe only problem here is you are not supposed to half Augmentin (unless both halves are taken at the same time). I believe the reason behind "not halving Augmentin" is that the Clav. Acid isn't necessarily distributed evenly wihin the pill...so if you take half a pill, you might get all the Clav. acid in one 1/2 and none in the other (or something like that).

There are reports of full recovery, and reports of long term residual symptoms. If this does cause brain inflammation (hence the antiinflammatories our kids use to help symptoms) It is unrealistic to assume that brain inflammation cannot cause permanent damage. Can the brain relearn or grow new cells, yes, seen in stroke victims, MS, lupus. but it is harder for the older kids to heal, and harder for those that have had many attacks. So yes, I do believe permanent damage can be caused by the inflammation. There is no proof to say either way, maybe with better imaging technology we will know for sure. Currently, an MRI doesn"t even show inflammation, on most panda kids, but inflammation is assumed by all of us whom give motrin to reduce symptoms.

Does amox help pandas? It has not been the drug of choice for any of the panda experts. Zith or Augmentin. We talk a lot about intracellular strep on this forum and I look at my kid whoms been on 500 mg of zith for 6 monthsn biaxin and cefdinir combo, augmentin at times, and at what point can I feel comfortable that the intracellular strep is gone? If she even had intracellular strep. My dd makes anti dopamine antibodies and has an autoimmine disease. If the clav acid regulates dopamine and reduces her symptoms and the zith is antiinflammatory then together may be a good thing. Plus the zith prevents strep. But u cannot take both high dose azith and augmentin for the long haul. (Too hard on liver). So just suggesting an alternative. You lost me. What are you doing?

What about the lowest does of amox 250 or 500, half twice a day(has same amount of clav acid as Aug XR,and also zith. That's kind of what we are doing with my dd right now. I apologize if this sound stupid..but i can't digest anymore info.... is it possible to get Clavulanic acid in time release form.... Ds can take aug xr..but he has to be on diflucan too as it just wipes out everything in his system.. is it possible to do azith and a clavulanic acid pill or do amox at a lower dose and do clavualnic acid...i wonder if time release is the key..not the high dose.. again this may be what you are saying..but i can't compute right now...

Ok. I think I confused u with my response. My dd recently switched from zith, been on it over a year and Murphy told me augmentin definately helps with tics(still unpublished study) so since my dd still has residual tics thought switching this July made sense. So tried for Aug xr and latimer said NO, too high a dose for weight, must be the amox amount becuz Clav acid is very low in XR. So started dd on Aug 875, she had MORE tics and racing heart. Couldn't understand this but started investigating the differences between XR and regular augmentin. Mostly the clav acid, and recently there was a thread on new clav acid drug being used to help depression and parkinsons. Phase two study showed too much clav acid was not good, too little also. Sooo.... In theory if clav acid regulates dopamine and seratonin, then the right amount may help tics, too much may cause other side effects. My dd has anti dopamine antibodies elevated so I am thinking dopamine is one of her issues. I have tried augmentin on my child many times in her life and every time she gets hyper. But my theory is that the right amount of clav acid could help dopamine and serotonin, the wrong amount, like any drug that alters serotonin and dopamine too much, could create side effects and increase symptoms. The other interesting note from the phase two study was that they thought the clav acid drug had some neural protection to prevent damage. Anyway, I just find it interesting that amoxicillin alone doesn't seem to be the drug of choice for pandas, but augmentin XR works the best and has lower doses of clav acid combined with amox. I am not sure the same success rate is seen in plain augmentin, maybe cuz it has too much clav acid? Hope I made sense this time. Everyone on this forum is concentrating on the augmentin killing the intracellular strep, I wonder if after the autoimmune reaction is triggered altering dopamine in brain, that the clav acid helps regulate the dopamine, and the amox prevents future strep infections. Rather than assuming the infection is still present, minimizing dopamine disregulation while the autoimmune disease goes into remission. Extended release amox then prevents future infection and a future autoimmune reaction triggered by exposure to strep. Now what about Augmentin ES, how much clav acid is in this? 1 tablet Augmentin XR: has 1000mg Amoxicillin (extended release) and 62.5mg Clav. Acid (NOTE: the adult dose is 2 tablets twice a day) 1 tablet Augmentin 875mg: has 875 mg Amoxicillin and 125mg Clav. Acid So, I'm confused...is Dr. Latimer saying the extra 125mg of Amoxcillin (in XR vs. reg.) is too much for an 80 pounder? That doesn't seem like too much of a difference (esp. since XR has 1/2 the amount of Clav. acid). Plus, the ADULT dose of XR is 2 tablets 2x a day...so we would in effect be giving 1/2 the adult dose....which makes sense, since our a kid in a 60 or 80 pound kid is roughly 1/2 the size of an adult.

Dr L said no to aug XR for dd,(she weighs 80 lbs) to big a dose, she takes augmentin 875. Too much clav acid, causes her anxiety to increase. Have u read post on Clav acid and new drug in phase two for depression and being considered for Parkinsins. Study showed reverse U shape graph for dosage and efficacy. So too much clav acid doesn't help regulate dopamine and seratonin. But the right dose does. Anyway, my thought is that is why XR works best, cuz clav acid is right amount to regulate dopamine not over produce it. Check out data on drug at pharmaceutical web site. Maybe the clav acid, and ssri saving sammy took plus the amox. minimized symptoms by regulating dopamine and seratonin and also prevented strep reinfection?

I looked into the pharm company u mentioned, with the clav acid drug. Appears phase II study results for depression were contoversial. Mentions reverse U shape curve, for dosage and efficacy. Too little doesn't help and too much doesn't help either. (U need the right dose, balance) But they are really pushing the parkinsons angle now. Dopamine and brain protection. What's so interesting is Murphy says that augmentin helps tics, she will probably be publishing on this when her studies are complete. So how can we find out how much clav acid is in the new drug? Also isn't zithromax also a type of clav acid drug, someone once said to me that augmentin is amoxicillin with something similiar to zithromax combined with it. I am not sure they are exactly the same but similiar mechanisms?? Any feedback?

So I have read that augmentin XR has 62 mg of clauvenic acid in each pill, yet amox clauvenate has 125 mg of clav acid per pill. So my dd recently switched to aug 875 twice per day. Therefore she gets 250 mg od clav acid per day versus those on augXR get 120 mg perday. I have wondered why it seems to make my dd a little hyper, could too much clav acid increasing seratonin and dopamine make her have hyperness. Why is aug XR with less clauv acid the Sammy Sammy dose? Could too much clav acid act like too much SSRI and cause issues with pandas. Or is more clauv acid better? If so why aug XR with less clauv acid. Is Murphy investigating different clav acid dosages? Any insite isgreatly appreciated.

What about his high ana, chorea more suggestive of autoimmune than pandas. Can u not go that angle, rather than trying to justify treatment off of pandas diagnosis? Also I thought the health insurance reform bill included research protocol for sick children, not effective till Sept 14th. If they keep denying, I would call a health care advocate and lawyer to help out, cuz they maybe able to give better direction. Health Insurance Reform is so needed.

Nancy, Is this her first time ever having a vocal tic. I am so sorry. She may need more than one ivig. Did she see symptom remission for a couple of weeks? Did she always have tics before ivig. Has she felt the ivig halped with ocd or other symptems. My dd gets ivig every 21 days. Not a complete cure, but my dd swears she feels better on it. Usually cannot wait for next dose. Some say the older kids need more than one ivig. How long has ur dd had pandas?

Want so much to see this fade away. How long did ur son have tics. My dd had very small tic from age 9 through 11, then remission, then very aggresive tics from 13 -14. Calming now but still come and go. I need some hope they will go away. WE RECENTLY switched to augmentin, but her tics seem a little more fequent, although she says she feels very good on this medicine. Do you recall if ur sons tics got more frequent before calming on augmentin? Thanks,

Thanks for the dosage? How long do u wait between infusions?

What dose does he receive and is it monthly ivig???

[Worried Dad, I know ur son is older and had tics, are they resolved now? I am still seeing some tics come and go with my dd, how long after ur three ivigs and augentin XR dose change did it take for tic resolution. I am so glad to here ur son is doing better. quote name=Worried Dad' date='23 August 2010 - 06:22 PM' timestamp='1282602158' post='80928] For our son, tics were indeed the most stubborn symptom and the last to go. IVIG didn't make his motor tics significantly worse, but he did develop a brand-new vocal tic after IVIG #1. As a rule, I've heard folks like Dr. K and Dr. L say that PEX seems to be generally more effective at resolving tics, while IVIG is generally more effective at resolving OCD. Hope things improve very soon for you both!

For the high level neuro's, it comes down to this.... Many kids have tics, many kids have ocd, and pretty much all kids have strep. So without blood markers of specific antibodies, how can they differentiate panda kids from all other children with tics, ocd. If you want to eliminate this argument, come with cunningham tests showing brain antibodies and cam kin two activation. It always makes for a more interesting meeting with the naysayers. Clearly if ur child has pandas, and u go to a non pandas expert, u cannot expect to be treated for pandas. How can they a treat a disease they do not understand? I like to tell everyone this... I took my dd to a neurologist and I got clonodine and haldrol recommended, I took her to a psychiatrist and they offerred prozac type drugs, I took her to an infectious disesase and they offered abx, I took her to ears nose and throat and they offered a tonsillectomy, I took her rheumotology and they gave us steroids, and then I took her to a pandas doc,and i finally got a more comprehensive plan of action, better abx, ivig, plan of action if she deteriorates for pex, and a lot more reassurance that someone is truly looking at the whole child and this illness. Its truly ur choice, if u know this doc doesn't believe in pandas or even if he does, if he doesn't have a treatment protocol, u are wasting ur time. Years past we had to fight hard just for abx, now several experts exist and our job is to take care of our children and be there for them, this fight for care will distract u from time with ur child. Once the white paper is published, and the new study is done, these docs will fall in line they have no option. Convinving a naysayer is a noble cause but somewhat uneccessary now. Fund raising, awareness and caring for our children is what I see as the next battle worth tackling.

I love the star system, and it could be like a survey. Things are getting a little weird out there now, neurologists are seeing the nimh Tom Insell article and saying to patients they are now considering using ivig. But still stringing parents along with pysch consults, rheum consults and infectious disease consults. Cuz they really do not still know how to differentiate the panda kids. It scary saying they will give ivig but stringing them along for a year until the study is done. (Of course very unknown to the parent) How do we inform these parents that the sames docs whom never believed in pandas and never have treated, still are not going to treat just delay the parents for another year. This delay could lead to less success of symptom resolution even with ivig finally. Now that pandas exists, we may have an even bigger battle on our hands to differentiate the good docs from those just trying to figure it out. Its frustrating to watch the spin continue! Even though this forum is no place for critism of specific docs, I agree we must find a way to still help our parents find the right treatment, and timely treatment.

Momaine, that's the exact info I got from my immunologist also. So the theory is to retrain antibodies and get rid of memory of old b cells, takes about a year to do that, b cells last over a year. Dr L says it can take up to two years for the brain to heal. quote name='Betty04' date='21 August 2010 - 05:28 PM' timestamp='1282426086' post='80723'] Momaine, Would you mind sharing whether your child has immune deficiencies and the dose of the IVIG? Thanks!

Elizabeth, I hear so much contrast on this subject, not to mention differences in opinions from docs too. What was your dose that was given every 21 days? There are families on the forum and whom I have met that do monthly and have seen complete resolution of symptoms, some who, symptoms got worse. I would rather do less frequent since this would be better and easier for my dd, but my docs look at me funny when I ask if monthly could make symptoms worse. I am confused, some families say monthly made children worse, I am not saying worse she is night and day from last year, but tics and ocd start to show up about 10 -12 days after ivig, remiss with next ivig again.(I have seen this consistent pattern 8 months now) Makes me think not strong enough dose, rather than wosening of symptoms. Not a cure though either at this point. So for those that did monthly, were symptoms worse than ever or just creepimg back. And did u see resolution of symptoms after each ivig for a little while, or did symptoms progressively get worse with each ivig? I know dosage is key, I am still looking for answers and complete resolution. Thanks elizabeth- I am glad ur son is doing better!!

Low vitamin D levels seen in Parkinsons, and in many autoimmune diseases. Dr L said vitamin D is used thoughout the immune system and is critical. She recommends vitamin D for the panda kids. If anyone gives vitamin D, what type do u give and what dosage. We were recommended to take between 1 and 2 thousand mg a day? Thanks for posting the article.

From my dd's (just turned 14 yrs old) experience multiple ivigs was the key. Each one helped a little more. Unfortunately she still has set backs if she gets sick, but with the next ivig we see improvement again. She now does every 21 days and we are hoping this will help eliminate or reduce any setbacks from illness. My dd's symptoms go into dramatic remission about 72 hours after ivig. She maintains this improvement about 9 days and then slowly starts to see symptoms again. This is why we switched to every 21 days to try to eliminate the last week and half of symptom relapse each month. My dd cannot wait for her next ivig, each month, she looks forward to symptom relief. She will most likely be getting her dosage upped, doc says to eliminate autoimmune disease with ivig, dd must maintain an igg level of at least 1700 at all times. Right now she ony maintains that for approx. 9 - 10 days. We are measuring her levels over next three weeks with new 21 day protocol, and will change dose as soon as blood levels are done. Anxious to see how long her improvement lasts with higher dosing. DD has had 9 ivigs to date, and her pattern of remission has been very consistent, except for last May when she had a high fever and resp infection, her remission from ivig lasted less time and her symptoms were much stronger, Finally resolved after second ivig. I hope ur dd continues to do well. Please keep us posted. Sharing of this info is so helpful for all of us to determine which dosage and protocol are working for our kids!!

This is the way they treat a child whom has been thru so much. I am so disappointed with our system. Once they called psych in, u didn't have a chance. We had psych called once in the er, it was a complete disaster, they implied things to my dd and scared her. I hope u can go back again and have pex asap.