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nevergiveup

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  1. My daughter 4 months after IVIG had her IGG's drop off and is officially going to be treated for PID with monthly IVIG's. Doctors are throwing around dosage levels because PANDAS dosage is different than PID. They are interested in giving her a dose that would help both conditions without overwhelming her with side effects since it is every 4 weeks. For those who have multiple IVIG's can you let me know about what dosages worked best. Also can anyone comfort me and tell me that They have seen IVIG help tics????? It definately cured her OCD but the tics seemed very odd after IVIG? Thank you.
  2. My daughter first presented with chorea, strange distant stare, tics, sleep issues and when she was tested by the neurologist, brain scan, heart ecco, blood work they were very concerned of lupus. Her ANA was 1 in 2650. Pretty high, high enough it made people scramble. So on to RHEUM with lung scans, kidney test, more blood test, she was evaluated every 3 months for two years. Childhood lupus is a very serious condition and the doctors didn't want to miss a thing. ( Fifteen percent of children die before age 18 ) Her ANA still remains high although does fluctuate. Basically in the end I was told by neurology and rheum, she does have an autoimmune disease (when her symptoms rose they did give steroids) but it is probably TS. The neurologist said that TS is probebly 4 different illness, one genetic, one autoimmune, one from trauma(head injury, forceps) and some developmental like pregnant mother smoking or low birthrate. The girls tend to suffer a lot from OCD also. (The SC autoimmune correlation)He also said he believes that the OCD and tics are different antibodies being over produced. This is why some kids get the OCD type presentation and others the tic presentation at different times and after different illness. He has seen TS come from staph, micoplasma Pnuenomia and strep. He is not a PANDAS believer at all. Although he knows there is an autoimmine TS. Won't treat. Works with SINGER also. name='FallingApart' date='Sep 26 2009, 08:01 AM' post='39270'] In your quest to get help for your child have any of the specialists mentioned CNS Lupus to any of you? As I have said before, our ped is fabulous and fully believes that we have PANDAS. But, from all of you urging me to look into an immuno route, our ped asked one of the best child immuno docs here to look at our case. We haven't yet met with him. But our ped talked with him and of course it seems he doesn't quite believe in PANDAS. He said that DDs symptoms sounds just like CNS Lupus and that CNS Lupus responds well to repeated IVIG - we have done 2 round each 30 days apart. I was wondering if anyone else has been told this and what you think. I did look it up and I will make my next post a quick summary of how it relates to PANDAS like symptoms but just wanted to get this out there to see what your thoughts are.
  3. My daughter first presented with chorea, strange distant stare, tics, sleep issues and when she was tested by the neurologist, brain scan, heart ecco, blood work they were very concerned of lupus. Her ANA was 1 in 2650. Pretty high, high enough it made people scramble. So on to RHEUM with lung scans, kidney test, more blood test, she was evaluated every 3 months for two years. Childhood lupus is a very serious condition and the doctors didn't want to miss a thing. ( Fifteen percent of children die before age 18 ) Her ANA still remains high although does fluctuate. Basically in the end I was told by neurology and rheum, she does have an autoimmune disease (when her symptoms rose they did give steroids) but it is probably TS. The neurologist said that TS is probebly 4 different illness, one genetic, one autoimmune, one from trauma(head injury, forceps) and some developmental like pregnant mother smoking or low birthrate. The girls tend to suffer a lot from OCD also. (The SC autoimmune correlation)He also said he believes that the OCD and tics are different antibodies being over produced. This is why some kids get the OCD type presentation and others the tic presentation at different times and after different illness. He has seen TS come from staph, micoplasma Pnuenomia and strep. He is not a PANDAS believer at all. Although he knows there is an autoimmine TS. Won't treat. Works with SINGER also. name='FallingApart' date='Sep 26 2009, 08:01 AM' post='39270'] In your quest to get help for your child have any of the specialists mentioned CNS Lupus to any of you? As I have said before, our ped is fabulous and fully believes that we have PANDAS. But, from all of you urging me to look into an immuno route, our ped asked one of the best child immuno docs here to look at our case. We haven't yet met with him. But our ped talked with him and of course it seems he doesn't quite believe in PANDAS. He said that DDs symptoms sounds just like CNS Lupus and that CNS Lupus responds well to repeated IVIG - we have done 2 round each 30 days apart. I was wondering if anyone else has been told this and what you think. I did look it up and I will make my next post a quick summary of how it relates to PANDAS like symptoms but just wanted to get this out there to see what your thoughts are.
  4. Thanks
  5. Hey this is nothing new guys. How about fibromyalgia, 10 years ago doctors laughed at this disease, including my father, uncles, cousins, and grandfather. (Whom are all physicians). Now there is a drug out for a disease that doesn't exist. I remember when I was younger and could die if I ate a peanut and many adults would ask if it was all in my head. Now there are lunch tables at school that are labeled peanut free. Much awareness has happened in regards to allergies and asthma. My grandfather was one of the founders of allergy and immunology. I recall many strangers in public places asking him if allergies were real. Even with a long history in my family in medicine, with two leading allergists and immunologists, one emergency medicine doctor (who has seen a SC case ) one pediatrician, one forensic psychiatrist, and one child psychiatrist whom all work for major universities in research (and all suffer from the typical doctor god syndrome assuming the patient is rather naive), my daughter (who is loved so dearly by all of the physicians above ) was admitted to the hospital for severe OCD and not eating for 9 days and not a ONE mentioned PANDAS. She quickly went into remission and was symptom free 2 years and then suffered again an overnight attack and was diagnosed with SC. Later after an ECCO and blood tests she was passed on to Rheumotolgy because it may have been Lupus. Afterwards PANDAS was considered. Now after Cunningham tests and again after a 2 year remission she again had a horrible attack overnight and received IVIG. There has been limited support for her medical care ( from her own grandad) and an almost scary silence in regards to any discussion of it. Just questions to me about how I shouldn't read the internet anymore. The researchers stand by the researchers and Singer trumps Swedo. The tide is turning with the new animal model and with new PR, new studies will begin soon. Its a long haul, look at the poor untreated victims of the fibromyalgia diagnosis they were also considered just nuts. Don't let the controversy stop you from following your gut and pushing for help for your kids. My daughter was first diagnosed 7 years ago. No help existed back then. With all the famous physicians in my family I was always use to getting the best care and best consults. Didn't help this time it actually hurt. I never looked outside my closed circle for help. (My father works with Hopkins so you can only guess what type of info he was getting) If I had only just done my own research I could have helped her. Things are moving the right way now, I hope!!!! Cunninghams tests may change all those hesitant to treat! (But it may unfortunately never repair the controversy I now have in my heart about my family.)
  6. I am sooo very sorry for your treatment at the Cleveland clinic. I don't believe they treat PANDAS, I am not sure why they inferred that. Double check, I do not think thay have ever done IVIG on anyone. Please check out Dr K in Chicago from web pediatrics. I am so sorry for your son and you, don't give up.
  7. Ok I have the data, it wasn't easy to get but I found it again and can now give better details. The article is from 2009 Feb Neurology India " Rapid resolution of choreic movements and Behavioral Disturbances suggest IV coricosteroids may be an option in treatment of Sydehams Chorea more so when movements are disabling. ". This is a quote from the article. The title of the article is "Remission of concomitant pupura And Sydehams Chorea after IV coticosteroids." Dosage was 25 mg per kg per day for 5 consecutive days. ( Seems like a lot but I had 1000 mg per day for three days and it worked great for my MS. ). The article mentions the etiology of PANDAS also. India seems to have a lot of SC and many articles. Interesting how a recent article in US showed slight cardiac issues for PANDAS kids. The article from INDIA talks of relapse rates etcc... Very similiar to my daughters history. I find it very interesting that American doctors from INDIA recognize PANDAS long before Caucasian doctors. I have heard of numerous cases where a child has seen a neurologist who says TS and then an India Doctor recognizes the signs of SC. It is more common, RF and SC in India because of the lack of medical care and many instances where antibiotics are not available. Their recently was a conference held for Indian doctors to establish protocols for SC including documenting standard practice of steroids and plasma exchange for SC patients. I have a crazy idea but could we get some money together to bring over these doctors from India to work with Latimer for a week and see patients. Read the study, it talks of titers levels, symptoms, emotional, OCD and tics. I bet if we got $20,000 together we could get them here for a week. After a $42,000 pex, 5 days of IV steroids looks damn cheap and may allow more treatment for children. They mention pupura??? is also seen with strep autoimmune antibodies. I never had heard this before??? What are the symptoms. Interesting the two major attacks my daughter has had, both times she has gotten small purple indents symmetically positioned (hundreds) on her thighs and knees, especially during a change of temperature in tub or in cold ocean? Is that purpura?? The indents (dots indented) disappear when her body goes back to normal temperature. It happens only within the first 6 weeks of an attack and only when she has been severely struck from chorea and tics. Glad your sons doing well. [/q
  8. Mom md, Have you seen the recent publication of High dose IV steroids and remission of SC symptoms? What was your sons dosage at the PICU? Thanks
  9. It was very good. Short and to the point, great awareness for all. Sammy gives us hope. I like how she said he showed no signs of strep( sore throat ). We should try to get the word out to email the today show thanking them. Because as we know, they will get some emails from doctors criticizing them for this report.
  10. Kim, I looked up this herb, and its more like medicine than a supplement. It has antimicrobial, antiviral, antibacterial and antifungal properties. Like an antibiotic and probiotic together. It helps asthma, diabetes, psoriasis and many other illnesses. Its one more documented case where tics were eliminated by treating the body for something infectious. One more documented case where tics were eliminated by treating the immune system. I cannot read the full article and I am curiuos as to why since tics do go into remission on their own at times, that the medical journal published this based off of one case. I am asasuming there must be evidence to support the claim the herb stopped the tics. I have tried to find the extract but am finding it almost impossible. I looked up ayurvedic herbals but it doesn't appear to be sold anywhere??? Any ideas? If you look at studies of this herb it is well documented by scientists in regards to its medicinal properties and its potential future drug use.
  11. Thanks for the posting. Here are some things I was able to find about Clerodendrum inerme http://74.125.95.132/search?q=cache:hKySum...=clnk&gl=us Clerodendrum and Heathcare: An Overview http://www.ncbi.nlm.nih.gov/pubmed/19069958 2007 May 1;10(9):1465-70.Links Chemopreventive and antilipidperoxidative potential of Clerodendron inerme (L) Gaertn in 7,12-dimethylbenz(a)anthracene induced skin carcinogenesis in Swiss albino mice.Renju GL, Manoharan S, Balakrishnan S, Senthil N. Department of Biochemistry and Biotechnology, Faculty of Science, Annamalai University, Annamalainagar-608 002, Tamil Nadu, India. The present study has investigated the chemopreventive and antilipidperoxidative effects of the ethanolic extract of Clerodendron inerme leaves (CiELet) in DMBA induced skin carcinogenesis in Swiss albino mice. The skin squamous cell carcinoma was induced in the shaved back of mice, by painting with DMBA (25 microg 0.1 mL(-1) acetone) twice weekly for 8 weeks. We have observed 100% tumor formation in the fifteenth week of experimental period. Elevated lipid peroxidation and decline in enzymatic and non-enzymatic antioxidants status was observed in tumor bearing mice. Oral administration of CiELet (300 mg kg(-1) bw) for 25 weeks significantly prevented the tumor incidence, volume and burden of the tumor. The CiELet also showed potent antilipidperoxidative effect as well as enhanced the antioxidant defense mechanisms in DMBA painted mice. The present study thus demonstrated the chemopreventive and antilipidperoxidative efficacy of CiELet in DMBA induced mouse skin carcinogenesis. http://74.125.95.132/search?q=cache:4FfIOn...=clnk&gl=us Effect of Clerodendron inerme on ErythrocyteMembrane Integrity During 7,12-dimethylbenz(a)anthraceneInduced Skin Carcinogenesis in Swiss Albino Mice http://www.informaworld.com/smpp/content~c...ll~jumptype=rss Abstract In order to evaluate the potential of medicinal plants of Tamil Nadu as sources of antiviral activities, we used seven different viruses to evaluate the methanol extracts of 30 plants, derived from 22 families and recognized for their local medical applications. Antiviral activity was the minimum concentration of extracts required to completely inhibit viral cytopathic effects (CPE), i.e., MIC100 values. Many extracts showed strong activities against Herpes simplex virus (HSV) and mouse corona virus (MCV, the surrogate for human SARS virus). Some extracts were also active against influenza virus and Sindbis virus (SINV, surrogate for hepatitis C virus), but fewer were active against the non-membrane viruses feline calicivirus (FCV, the surrogate for Norovirus), rhinovirus (common cold virus), and poliovirus. The most potent extracts (low MIC100 and broad spectrum of activity) were obtained from Gymnema sylvestre R. Br. (Asclepiadaceae), Pergularia daemia (Forsskal) Chiov. (Asclepiadaceae), Sphaeranthus indicus L. (Asteraceae), Cassia alata L. (Caesalpiniaceae), Evolvulus alsinoides L. (Convolvulaceae), Clitoria ternatea L. (Fabaceae), Indigofera tinctoria L. (Euphorbiaceae), Abutilon indicum G. Don. (Malvaceae), Vitex trifolia L. (Verbenaceae), Clerodendrum inerme (L.) Gaertn (Verbenaceae), and Leucas aspera Spr. (Lamiaceae), which showed anti-MCV and anti-HSV activities at a concentration as low as 0.4 µg/mL. In some cases the activities were enhanced by light, suggesting the presence of photosensitizers. Some of these antiviral activities could contribute to the medicinal properties of the plants, and also provide more support for the concept of scientific validation of traditional plant medicines in the fight against infectious diseases http://www.find-health-articles.com/rec_pu...in-isolated.htm A SYSTEMIC ANTIVIRAL RESISTANCE-INDUCING PROTEIN ISOLATED FROM CLERODENDRUM INERME GAERTN. IS A POLYNUCLEOTIDE : ADENOSINE GLYCOSIDASE (RIBOSOME-INACT IVATING PROTEIN) Two systemic antiviral resistance-inducing proteins, CIP-29 and CIP-34, isolated from Clerodendrum inerme Gaertn. leaves, were tested for ribosome-inactivating properties. It was found that CIP-29 has the characteristics of a polynucleotide:adenosine glycosidase (ribosome-inactivating protein), in that it inhibits protein synthesis both in cell-free systems and, at higher concentrations, in cells, and releases adenine from ribosomes, RNA, poly(A) and DNA. As compared with other known RIPs, CIP-29 deadenylates DNA at a high rate, and induces systemic antiviral resistance in susceptible plants.
  12. Hi, Thanks MMC. Sorry about the pregnancy question. Dr. Latimer is very helpful. I hope your son gets better soon. My daughter recently had a bad episode mostly tics, never really had tics before that were noticeable but now does. She's 13, beautiful girl inside and out, she goes to school everyday with so much enthusiasm. She loves tennis, figure skating and all her friends. Her most recent attack with chorea took her off the ice for all summer. Its good to hear your success and your daughters. Although we may have been part of the genetic reason why our kids have PANDAS we are not the environmental cause. Most autoimmune diseases have a genetic side and an environmental trigger. I believe the excessive immunizations on our kids has altered their immune systems and their blood brain barriers. Denmark just posted results that TS was on the rise. Im sure it is in the US also, so is ADHD, OCD, and autism. Many studies have been published implicating all of these illness to antibodies and immune problems. Hi nevergiveup, I never really had a relapse from SC...I just outgrew it slowly. I am a male, so can't speak for the pregnancy part. Both of my parents have passed away, so I cannot ask my mother about my history, and it is a bit foggy. I remember most issues were in the first 4 or 5 years. At puberty, and after, my tics really started to diminish. Most people would never know I even had them. At age 15 or 16, I certainly had no issues at school, or taking drivers ed, for example. I was on intramuscular bicillin for 10 years (those monthly shots hurt!), then on Pen VK a couple of years after that into college...this did its job and did not get strep again. I have a few tics into adulthood, but they don't bother me much...no OCD to speak of (never struggled with that much). So, after puberty, I have led a normal life...and never had steroids, IVIG or PEX. So, yes there is great hope, which I have for my kids. I was never told this mess could be passed to my kids. So, have been a bit shocked, but I understand what they have, at least to a certain degree.
  13. Hey Mom md, How much was the total PEX bill and how much did insurance pay. IVIG with Dr. K can be up to 10 grand, wondering if PEX is similiar. Thanks
  14. Hi peglem, I know Dr Latimer does not believe there is an age limit for treatment, she has seen kids as old as 18. Some insurances actually cover a PANDAS diagnosis for PEX but not IVIG. Plus the kids are put under for the central line. I know this sometimes seems like an endless battle just for treatment. I would taper the prednisone over a 4 to 6 week period. Side effects are tough but my daughter did that twice within the last 2 years. Her rheumotogist wanted her on them 8 weeks, felt the dosages discussed on this forum were too low and short to reduce brain inflammation. However rheumotologists use steriods all the time ( lupus and CNS damage) and know how to deal with the side effects, other doc's seem scared of long term use. I know people on this forum talk about early treatment, and yeah thats best, but if your kid is older there is still hope. Look at some of Swedo original study kids, not all were young. Saving Sammy. Some doctors have treated kids in High School and College. One girl came on this forum at age 17 finally went into remission.
  15. Nice note from Diana, and great idea to visit the lab. Several things though I want to add after my child had IVIG and had the Cunningham tests. My child had IVIG mid may and had her Cam Kinase drawn on July 7 to validate her diagnosis. Dr Latimer wanted the Cam Kinase done and she said IVIG will not affect the results. In August when we got back the results it was 144, I was concerned and called Dr. C and asked why after IVIG are her results so High, she said. "IVIG does not get rid of Cam Kinase only PEX does that. ( Similar to what Dr. L said). She felt it may have lowered it slighly. And she emphasized MAY. We will be testing over time to see if my kid is on the mend. No one is quite sure why IVIG helps, may be BBB or B cells or some other mechinism. But your notes Vicki above say that the only way to reduce Cam Kinase is through IVIG or PEX. I know everyone is trying to understand the testing and the numbers and I wanted to tell you what I was told so that parents understand and are not disappointed after having tests again after IVIG. Dr C said TIME or PEX reduce Cam Kinase. Let me know if Dr. C has new info in regards to this since mid August. Since the debate between PEX and IVIG efficacy is always discussed on this forum.
  16. Diana, Buster, Dr L actually mentioned to us to chart the convalescent group numbers in Dr. C 's study and notice what the average is for the PANDAS kids while not symptomatic. Pretty high and another interesting way to look at the data. Which of course is why getting a benchmark while your child is well is very helpful in interpreting the data. My daughters numbers are 144 after 7 weeks post IVIG and 2 weeks post steroids. She was on steroids 4 weeks after IVIG. Dr. C said it takes years to reduce the Cam Kinase levels to normal. And the opening of the blood brain barrier (usually weakened from infection) causes symptom to reappear if Cam Kinase is above normal, hence explaining Cam Kinase with limited symptoms. So antibiotics help prevent strep infections and the raising of Cam Kinase but what strengthens the blood barrier???? Not getting infections?? Monthly IVIG's. Tumeric??? Interferon? Zithromax?? Exercise?? Caffeine, Estrogen!!!! These are some of the things that can increase BBB do you know of anything else??? Is this not key to treatment and long term success, preventing the antibodies from leaking through the BBB and causing damage. Not to mention saving our children from future conditions caused by leaky BBB like MS. Any advice? . quote name='Buster' date='Sep 5 2009, 10:53 PM' post='37473'] Hi folks, Just to remind everyone, we don't yet know what real normals are on the tests yet -- or what symptoms are tied to which antibodies (if at all). PANDAS is thought to have a pathogenesis similar to Sydenham Chorea and to be caused by the combination of three events: the creation of an antibody to GABHS that cross-reacts with neuronal tissue a genetic pre-disposition that does not suppress the antibody a break-down in the blood brain barrier that allows the antibody to reach neuronal tissue Just because we have the antibody in the blood that could cross react with neuronal tissues doesn't mean it will. Essentially you need all 3 elements to get an exacerbation. It is my belief that the break-down of the blood brain barrier is the dominant reason we see exacerbations (i.e., it is the last straw). So what we see with Prednisone and likely with IVIG (and maybe even with azithromycin) is closing of the blood brain barrier by reducing inflammation of the endothelial cells. We've drawn titers 3 times: once when we were in a calm quiescent state once during an exacerbation (pre-prednisone) once post-prednisone CaM Kinase II was 185% in the calm, 253% in the exacerbation and 170% post-predinsone. So it does look like CaM Kinase II is correlated with exacerbation as per Kirvan. We also noticed that anti-Tubulin was elevated in the exacerbation. Prednisone did seem to lower anti-D1, anti-D2 and anti-Tubulin, but strangely didn't have an effect on anti-Lysoganglioside. We're not sure yet why the anti-Lysoganglioside didn't drop... Here's our numbers: quiescent: anti-Lyso: 1280 anti-Tubulin: 1000 anti-D1: 8000 anti-D2: 16000 CaM Kinase II: 183% [*] exacerbation (pre-pred): anti-Lyso: 640 anti-Tubulin: 4000 anti-D1: 8000 anti-D2: 16000 CaM Kinase II: 253% [*] 3 weeks post-pred (quiescent) anti-Lyso: 1280 anti-Tublin:2000 anti-D1: 4000 anti-D2: 8000 CaM Kinase II: 170% Regards, Buster
  17. Hi. Elizabeth, You sure have found some good doctors. My child also failed the pnem titers except two, plus has low IGG, low subclass 1, low C4, high ANA, etc..... Chronic infections except my immunologist doesn't know anything about PANDAS. Could you please private message me your doctors name? Thanks,
  18. Hi MMC, When you were younger with SC, how many times did you relapse??? I have heard that SC can return when you are pregnant? At what age did you start feeling better? Since my child has both tics, chorea and 0CD, two big attacks I am always looking for hopeful outcomes??? Thanks
  19. I have read in previous posts that DR. K was in Europe meeting with doctors that treat PANDAS. He was gathering info. Does anyone know who he met with and what he learned? It would be great to know if they have similiar protocols as he does, if they have documented case histories, doseage, etc.... I believe I heard he went to Germany but need clarification. Thanks for info you can find.
  20. Colleen, You have inspired me, My turn, I'll give it a try too. We need doctors like Singer to look deeper, and rethink all of this. He did say with an animal model it would be legitimized. I will be contacting him regarding this. If he replies I will let you know.
  21. Hi Buster, Hope your daughter is doing well. I read the network a lot but rarely comment. Harvey Singer is someone we desperately need to move this PANDAS cure along. He is a rather difficult man it is pretty clear from his web site at Hopkins. He actually says on his web site that the reason why PANDAS is embraced by parents is because we would rather believe that this was caused by an infectious agent than believe it is hereditary. This is so silly because if PANDAS is an autoimmune disease it is also hereditary. We as parents are looking at the severe sudden onset and symptoms to help diagnose and therefore find treatments not looking for excuses as to causes. Anyway, you seem extremely knowledgeable about his control Group and selection criteria, have you tried emailing him or meeting him? He also said without an animal model that this cannot be autoimmune, and with the recent mouse model could he be swayed to reconsider. Not to mention the recent italian study with the antigens. He is a huge figure on a national level for TS, his reevaluation of this would be key to helping many. Any ideas???? Also has anyone on the forum had their children seen by Trifiletti? He I believe worked for Singer in the past but is now doing his own thing? If anyone can give me more info about him it would be very helpful. Thanks so much. Also my child had IVIG three months ago, hang in there, I know how your feeling. Although we still see minimal tics, my child says that things have never been better for OCD. Although not 100, close to 90, lots of smiles and laughter. It was slow gradual improvement, I was at first very disappointed, now I know it worked and worked well. Lots of gratitude for all your research!
  22. Vicki, Be careful, he puts everything you say in writing and it is retained in the children's hospital medical records. Then when you try to see other doctors they are guarded and label you overly vigilent and a trouble maker. You will lose your ability to get proper care for your child. If he is talking with Cunningham, he would already know that if your child has a cold, symptoms relapse. This is well understood in autoimmune diseases. He knows this, I know for a fact he knows this he told me. He doesn't treat he says so clearly on the internet. I know what kind of reputation Children's has in Cincinnati. People in this town love childrens. Just the thought of going to another doctor with less credentials makes you scared you are doing the wrong thing. This was why I also insisted on staying at the hospital. However many divisions in CCHMC are leading in protocols and treatments and have well earned the respect of everyone in Cincinnati. Gilbert obviously is not like the other doctors in the other specialties. He is not a diagnostician, rather a statistician (look at his degrees). Funny when we go east, we always hear from the doctors and nurses, " wow why do you come here, with Childrens at Cincinnati." I never know what to say back to them because I feel the same way.
  23. me='Vickie' post='35725' date='Aug 4 2009, 12:35 PM']I'm not sure. When you're in the midst of it, you tend to forget to ask those questions. I didn't find this group until after that whole episode ended, so at the time I didn't even know what a steroid burst was. He's the one who offered it.The neurologist is familiar w/ PANDAS, has been research studies, and I do trust him. I do have some issues w/ him now for other reasons so that's why I haven't posted his name as a suggestion to others.Dr Cunnigham does know him.
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