P_Mom

yes, yes, of course....steroids only under the direction of a doctor. I would consult with my boys PANDAS doc before giving my son(s) a steroid burst out of my "stash" ...their weight has dramatically changed since the last time we needed to do steroids and I know the dosage would be different. I don't mess with that. I didn't mean to imply to anyone that I give steroids ramdomly at will. (if I did...sorry) I have actually only given my younger son 2, 5 day bursts in over 4 years....older son never got any steroids. Now, I will be honest and admit that I do up my boys abs from 250 mg once a day to either 250 mg twice a day, or, 500 mg twice a day, (for about 5 days) on my own, if I see a concerning sudden increase....which usually means strep is somewhere. This has worked for us. Is it smart to do without a doctors approval? Heck, I don't know......but sometimes I feel I know what my boys need better than anyone.......and I don't feel an increase in abs is dangerous. Anyway...Elijomom.....we do just want the best for you and your girl!!

Never happened here. My son never had a 'rebound effect'......only improvement. And he never got worse after steroids...nor have his symptoms ever returned to the degree they were before the burst.

Neither is a cure...in my opinion. I believe PEX and IVIG (as well as steroids) work to manage PANDAS. They can bring your child out of an exacerbation....and/or manage the PANDAS well enough for healing to take place. It is the hope of us all that, as Madeleine Cunningham put it..."the immune system tends to right itself over time." (interesting how TS gets better after puberty!) So, we use these treatments to get our kids "there" in the best shape possible. I am hanging onto her words! Dr. K states the same thing...."how well your child is doing while going through puberty will be how well they do long term." Are Cunningham and Kovacevic correct?? Nobody knows...only time will tell. But, I for one am going to do whatever it takes to get mey kids in the best shape possible before they go through puberty! Why not?? They may be right!

No, she is not the minority. We have had immediate, dramatic results with steroids. Stopped a sudden exacerbation of tics from Pertussis in it's tracks. Went from ticcing a lot to basically nothing the next day. Many just don't post about it, or, have posted about it long ago and just don't want to keep repeating themselves. Also, off this forum, there are numerous PANDAS children who benefited dramatically from steroids. I always have a stash in my medicine chest....if a decent flair ever comes about....I will up the antibiotics and give a steroid burst. It keeps the exacerbation from getting out of control and harder to deal with. I do agree (and I know I have pm'd you about this before) you need to choose a route and go with it. It seems you are looking into pursuing every angle and not really going with any of them. Tonsillectomy and steroids MAY just be the things needed to help your child. Antibiotics worked great for my boys...but, without steroids and tonsillectomy/adenoidectomy, I don't know that they would be doing as well as they are today. You are here looking for advice. I have been at this since 2007 (see my member date) and DcMom has been at this a while and has gone through all the procedures. We do have some wisdom under our belts. We have read it all...seen it all and collectively, done it all. DCMom gives you excellent advice and at some point you are going to have to take someone's advice (whether Lyme, Tourettes, PANDAS) and go with it full force if you want to find out what is going on with your child. One direction at a time! If I were in your shoes......I would do a steroid taper... (this is just what I would do...not meaning to tell you what to do...it is a decision you have to make) If your daughter has PANDAS....you should be amazed at the results. Yes, the frist few days of the burst can be bumpy at first.....but then, dramatic improvement. We are just trying to help you. Choose a course and go with it! I read your post again. If antibiotics are not working, and, you say it still means it could be PANDAS (and you are right) then what is your next step if you believe it is PANDAS? If you are not willing to take the next steps for PANDAS treatment, then, your doc is right.....you will have to ignore the tics. Also, if you and your husband are too afraid to try anything else in fear of making her worse and losing her happiness....then don't...again, you will have to ignore the tics. If that is how you feel...what is it you are seeking then? There is no easy way out. By the way...when we went to see out ENT about tonsil removal...my sons tonsil looked just fine...small, not infected, etc. He had no strep issues at that point either. We removed based on our docs recommendations. Anything that can help eliminate (not completely, I know)...but atleast help to eliminate the incidence of strep (our trigger) then do it. (Docs words) Made perfect sense to me! We went for it with the same conditions as you have..but, we had added precautions and risks with my son because of something totally unrelated to PANDAS....we still did it. We are sooo glad those things are gone. When tonsils were removed...the small uninfected tonsils were "very infected with pus in some areas."

Peg... I have no answers for you. I know you have looked at everything and done everything....you have fought such a long, hard battle. I just wanted to say I am sorry...I am sorry you and Allie, and the rest of your family, have to go through this. It sucks! I would be tired, too. p.s. Your "tired of spelling correctly" comment did give me a chuckle.

Pam... Do you know if this child has had strep in the past two years?

Spctmom... It is sweet of you to thank me, but, you are giving me way too much credit. Because I had also never heard of such a finding and also found it very frightening....it was out of my own curiosity that I simply googled "MRI Black Bone Marrow" and it was the first thing that popped up. Took all but a minute...no research involved. Anyway... Hope all goes well with treatment! How fortunate of you to know so many of the "big wigs" personally!!

Spctmom.... You may want to get a second opinion on the black MRI findings before treating your son for it....... "Nearly every part of the body may be studied with MRI. MRI gives very detailed pictures of soft tissues like the brain. Air and hard bone do not give an MRI signal so these areas appear black. Bone marrow, spinal fluid, blood and soft tissues vary in intensity from black to white, depending on the amount of fat and water present in each tissue and the machine settings used for the scan."

Both boys on Augmentin. Worried Dad and MOMWITHOCDSON..........I am sooooooo hoping the reduction goes well for you and yours!! I will be checking in to see the results and praying for good news!!

Juliafaith.....the problem with that is when the parents are so new and fresh to all of this and they do not have the strength to pick and choose. When someone posts with such conviction that their information is fact...others tend to get swayed by it and head that direction. No, not everyone, but many. And many do not doubt temporarily...they change course...over and over. Yes, brainstorming and sharing opinions is great....it is what we need....but so many here state things as fact, even offering up treatments for others children. It is dangerous. So, I have to agree with Philly and DCMom. Spctmom... I also know of over a dozen (probably more) "pure" PANDAS children......and yes, most of them are not on this forum, and, some of them have left because of such statements made that they are in denial, lacking knowledge, etc. if they believe thier children are "pure" PANDAS. Well, my children are "pure" PANDAS. Yes, I have looked, I am not in denial and we have seen numerous knowledgeable doctors. Both went from "normal" to "not" after the same strep infection in 2007. They were both treated with 2 courses of abs to eradicate their initial strep infection. Since then, they have been on low dose porphylactic abs. There were one or two times since then they had to take a full course of Biaxin and a course of Zith (in 4 years)....once for Pertussis and another for a suspicious cough. Neither "herxed" with the addition of a full dose antibiotic. Neither ever worsened with abs...only improvement. They are not antibiotic dependent...they can go off without any return of symptoms. They never did long term full dose abs. They have both been strep free for over 4 years and neither has had another horrible episode. They have both just gotten better and better over time. Now, 4 years later, my older son has been in remission for about a year now and announced to me this past summer (and this kid would NEVER talk about PANDAS) ..."Hey Mom...it's gone." Me.."what's gone?" Him..."The PANDAS stuff." Who knows...maybe he feels it...maybe he knows it. I don't know but I am starting to get really hopeful for him with his length of remission and the fact that he now has had multiple illnesses with no symptoms of PANDAS. (has a cold and cough currently....nothing PANDAS wise) Would he react to strep? Most likely, he is only 11 and I am not taking my chances of pulling his antibiotic until he is through puberty.....he is only on 250 mg Aug. daily. We all know that low dose Aug. would not touch Lyme and CO......he does not have any of that. My younger son is also doing extremely well....he was a much more severe presentation, but, he responded to antibiotics and two steriod bursts which stopped symptoms in their tracks. Thank God for steroids if you have a PANDAS child. Nobody would notice a thing in either of my boys now.....they are thriving. Neither ever required IVIG...but, if it ever came down to it...I would take the band-aid in a second to help bring my child out of an episode from ####...and I would do it again and again if I had to. Pure 'PANDAS' does indeed exist and in more frequency that you may think....how would you feel if I posted that PANDAS and Lyme/coinfections appearing in the same child was unusual, actually rare, and that the parents here that believe their children have PANDAS AND Lyme, coinfections, (MCIDS) etc. are misinformed, in denial, and go to incompetent docs??

UGH! SO sorry Pam!

We have been taking both boys to a huge, beautiful 9/11 tribute every year since they were 3 and 6.....we are very involved in the ceremony (helping, etc)...and my husband sings at it. It has not affected either of them negatively....also, my 11 year old has seen the documentaries. (I think my 8 year old has seen bits of it last year, too) They were actually both moved by it.....no fears developed...no obsessions,etc. We believe strongly in raising our boys to grow to love and respect our country...realize what a great country it is..... the harsh realities that exist in it... what it takes and how important it is to defend it...and to remember all the brave men and women who lost their lives that day in doing so. This is just us.........our boys do fine with it...it is an important day of rememberance in this house. We were just thinking the other day that it is time to take the boys to Shanksville. Philly.. Airial...there really is no way to tell how it would go over with your kids. I guess if they have never heard about it, and you are worried about it, perhaps do what nickelmama is doing and wait until they ask. Around here, for us, I think everybody we know has been going to the memorial every year and taking their kids....no matter what age. We never gave it a sceond thought....it is just what we do.

Was your child kept on prophylactic antibiotics after successful treatment at age 11? Was he on antibiotics when he relapsed at 15?

Please be aware that this is a very brief summary of the findings. Dr. Cunningham will be publishing her findings with much more detail soon. She told me "the papers are all ready." So, please do not feel that this is it....there is so much more that she did not want released before the papers are published! Thanks.

Final Progress Report ~ Pepsi Global Giving Project PANDAS Dr. Cunningham and her lab thank everyone for the opportunity to advance the work on PANDAS and related diseases. Pepsi Global Giving Funds have allowed us to continue research on in vitro tissue culture studies of the autoantibodies against the brain in the childhood illness named pediatric autoimmune neurologic disorder associated with streptococcal infections or PANDAS. PANDAS is a debilitating childhood illness leading to obsessions, tics and other symptoms such as enuresis and anorexia. PANDAS illnesses debilitate the entire family. Studies suggest that streptococcal and potentially other infections may lead to the induction of autoantibodies against the brain and trigger the onset of disease. Pepsi funding helped us to hire an expert B cell immunologist who is investigating monoclonal antibodies produced from PANDAS. This new information will allow us to look more closely at many more autoantibodies from PANDAS in in vitro experiments. The main focus of our studies has been investigation of antibody producing B lymphocyte cell lines(antibody producing cells) previously produced in our laboratory from Pediatric Autoimmune Neuropsychiatric Disorder or PANDAS. B lymphocyte hybridoma cell lines were cultured by tissue culture in Iscove's Modified Dulbecco's medium and the antibodies produced by these cell lines were analyzed for reactivity with brain autoantigens which may be targeted in PANDAS. Our hypothesis is that autoantibodies are produced against the brain after infections and can signal neuronal cells in the brain and cause abnormal neurologic symptoms including movement and behavioral disturbances such as tics and obsessive compulsive disorder. New data may explain how signaling in brain tissues may play a role in inducing abnormal amounts of neurotransmitters in the brain. We know that neuronal cell signaling is elevated in cultured neuronal cells when treated with antibodies from PANDAS. The antibody reactions may be linked to symptoms to better understand how the antibodies may play a role in disease. Our experiments have utilized the Enzyme Linked Immunosorbent Assay(ELISA) to detect IgG autoantibodies sera from PANDAS and related diseases. Antibody reactions such as the neuronal cell signaling may be linked to symptoms. We hope to better understand the antibodies and how they may play a role in disease. Our experiments will continue to test monoclonal antibodies from PANDAS for binding in the ELISA and for functional signaling of neuronal cells. Our in vitro studies will provide new data that can be translated to human disease. She ended an e-mail to me saying... "Thank you for this miracle that you pulled out of heaven for us." The "you" in the statement is for all of us....all of us on here who worked so hard to make this funding and research a reality. Thank you to all who participated, voted, etc. -Kelly

......to present her research on PANDAS! Way to go Dr. Cunningham. part of an e-mail I received..... " I plan to attend the International Lancefield Symposium on streptococci and streptococcal diseases in Sicily in Sept and present all of our work on PANDAS and Sydenham Chorea."

PUT THEM ON KEFLEX!

Well said....mama2alex! Get a blood test for your kids to see if they have immunity to whatever vaxes the docs want to give your children. They may still have immunity and the vaccines would be totally unnecessary.......and you could turn in the results showing the schools your kids have immunity. And about Pertussis.....totally agree. It is not because of the evil anti-vaxers, but a failure of the vaccine. This is what several docs told us. And as a side note, both my sons were also fully vaxed against Pertussis and they both got Pertussis 2 summers ago! (as did several children at our church and some adults (even my father)) They now have immunity, of course, but, I bet they also had zero immunity after the vaccines just like you mentioned. They do have, still, protective levels to diptheria and tetanus...so atleast that one "took." So, my advice to the original poster....get a blood test to check for immunity before giving the vaccine and risking a flair. Testing for immunity is always an option if one wants to avoid boosters. Provided titers are high enough- that is enough proof not to revaccinate. I believe you when you say doctors told you there was a "failure of vaccines", however, there is a certain percentage of the population that fails to seroconvert and develop immunity to specific vaccines- period. Then there is the whole issue of waning immunity (entire reason for vaccine boosters). The vaccine industry has never hidden the fact that some folks will just not develop immunity to certain vaccines regardless of how many times it is given. This is well researched and well published. I never took to small pox as a child- they gave it to me in my arms several times and my legs several times- never took and they just gave up.Small pox is not even given,anymore- thankfuly! However, I have immunity to Hep B, MMR etc. I had Measels and mumps, as a child, so one would expect immunity to those sans any vaccine- but I never had rubella and my titers are OK on that. When we did the big vaccine campaign on heathcare workers for Hep B in the 1990's- we followed up with titers to assure immunity. Some failed to EVER convert.Regardless- even if given additonal boosters or entire repeat series. Some folks just don't seroconvert- it was reported back then that as high as 10-15% of folks that receive Hep B may fail to ever develop immunity. I would hesitate to state this is a failure of the vaccine- just the person's individual response to vaccination. Has nothing to do with antivaxers, either. I'm sure there is a reason for it but it would require lots of blood work to determine if these folks have some type of underlying, undiagnosed immunodeficiency that causes them NOT to gain immunity. These folks are the ones dependent on herd immunity for protection. Okay....help me wrap my brain around this one. Usually I would do my research, but, I am so pooped out from researching, I am just gonna hope you help me with this. So, using my boys as an example (waning immunity would not be the case for them since they got Pertussis 1 and 3 years after the last vax)....anyway, why would they seroconvert and develope a robust antibody response to natural Pertussis, but not convert and develope antibodies from the vaccine? To me, that seems like failure of the vaccine.

Well said....mama2alex! Get a blood test for your kids to see if they have immunity to whatever vaxes the docs want to give your children. They may still have immunity and the vaccines would be totally unnecessary.......and you could turn in the results showing the schools your kids have immunity. And about Pertussis.....totally agree. It is not because of the evil anti-vaxers, but a failure of the vaccine. This is what several docs told us. And as a side note, both my sons were also fully vaxed against Pertussis and they both got Pertussis 2 summers ago! (as did several children at our church and some adults (even my father)) They now have immunity, of course, but, I bet they also had zero immunity after the vaccines just like you mentioned. They do have, still, protective levels to diptheria and tetanus...so atleast that one "took." So, my advice to the original poster....get a blood test to check for immunity before giving the vaccine and risking a flair.

This dog is getting old........it may have aches and pains, arthritis, or an "unseen" injury, etc. that prevent it from jumping up easily.........only going for it when enthusiastically coaxed. It may cease coming up altogether in time no matter how much bribing. Maybe.....

We use...after many trials and errors.....HLC high potency capsules from Pharmax...we get them online. (no strep strain) Anyway.....if your child doesn't swallow pills, they have a powder form or you can open the capsules and the stuff completely dissolves in liquid....no girt, bad taste. etc. You don't even know it is in there....except if you get the powder form...it is apricot flavored...tastes good. Pearls...FOR US...I didn't feel had enough "stuff" in it and for some reason I prefer refrigerated probiotics over shelf stored........again, this is just me.

My boys were 4 and 7 when they were put on prophylactic penicillin. I had never attempted pills with them before, but, the thought of the hassel with the liquid version prompted me to ask for pills without even trying anything with them beforehand.....I was determined, but, on my side was their huge dislike for the liquid taste....as you also have in your favor. I picked them up, (the Pen Vk pills are tiny), told them to to put them in their mouths and take a big drink and swallow the pill with the water. (otherwise they would have to take the yucky liquid) Viola! Down the hatch for both of them, first try....no problems....remember...my one son was only 4. They can now swallow horse pills if needed....which is good because the Augmentin is bigger...the 500 mg even more so. I couldn't imagine lugging around the liquid....and the taste really is yucky! Give it a shot.... maybe 'sometimes' the parents are more afraid to give their kids pills than the kids are of swallowing them....sometimes. Oh, penicillin is best given on an empty stomach....like it says. I gave in the am immediately upon awakening.....then, just before bed and I would "close the kitchen" 2 hours before bed. (we are not on that med anymore, so, those days are over) Probiotics 1 hour before, or 2 hours after eating. Sorry if I repeated what others already said....I am bored today.

Hi Jill! I have been waiting to hear about your daughter. YEAH! Good to see her numbers dropping (liver enzymes). Anyway.....I bet the farm that the next time you get everything checked...her enzymes will be even lower and her white blood cells will have recovered completely or be really close. (given she stay off meds) My opinion is that the problems are strictly medication caused....and now she will recover now that she is off. The same thing happened to me ...my white blood cells decreased significantly when on my "lyme" meds....came off meds and they recovered. Also, I would not consider a downward trend in her WBC counts from 6.9 to 6.2 anything measurable...it is such a minute difference that it can't be counted as significant.....just typical lab/cell fluctuation. Your real drop in WBC's came in June. (neutrophils can very widely .....depending on exposures)......anyway....you are a smart cookie......you'll figure it out and she will be fine! geez....good thing I proofread.......I left out the o in counted! p.s. I do thnk the reason some kids are getting strep/infections while on multiple, high dose antibiotics is because of this very reason.....at times these meds can lower your body's natural ability to fight infections......you just get more susceptible. I am an advocate for the lowest, MOST EFFECTIVE dose possible to control PANDAS/strep. Happy recovery!

Jill...I believe for the Comp. panel, the fasting only comes into play for the glucose part of it. Our lab gives two ranges in the glucose...one if the child was fasting and one if not. I don't believe fasting has any affect on the other tests. Let us know when you figure out what is causing it. Bio and adopt..... wow..sounds just like my son except he only spits up a little.....never too much that he has to spit it out. Not yet, atleast. Docs don't know what it is with him either. We will be going back to CHP in a couple weeks. Good thing about this gastro is he knows about PANDAS and is actually thinking there is a connection...so he is looking at all angles. (AMEN!) It may end up being a tic that goes away......who knows, but, I understand him wanting to rule out more "serious" causes...I do, too. (your sons AST and ALT are like my sons.....I still think it is weird these kids, not all, but, so far the majority seem to have higher than average AST numbers.)

:lol::lol: yeah...I thought that was funny, too. Here I am all jazzed up about his AST being 40! Anyway...the liver of an alcoholic would have higher AST...so, we know she is not drinking. She'll be okay. Wait...I just looked at her numbers again. Doesn't this statement fit? •An AST:ALT ratio equal to one (the level of ALT is higher or equal to AST), but the levels are very high, suggests acute viral hepatitis or drug-related hepatitis. She'll still be okay.