PhillyPA

Russell Dale, MD has published many many articles. If you google him, you can find many of his publications. For a quick glimpse go to pandasnetwork.org Go to the tab Strep Controversy, then click on Encephalopathy. There are two articles by Dale you can click on and read. Dale does do IVIG and plasmapherisis and steroids. He also does active research. If you e-mail him with your daughters problem, I am confident that he will see her as quickly as possible. He knows how this disease can progress quickly. I strongly encourage you to contact him. Whenever I correspond with him, I always e-mail his reply to my son's neurologist in the States. Good luck!

I sent you a private message with Dr. Dale's contact information.

You need to get help quickly. Your case is similar to my son's case and another parent that I know of. Her son stopped speaking at age 11. It can get much worse. Once the speaking stops, it is very very serious. You are so lucky to be in Australia. I wish I lived there. You have access to the world expert on this disease and other auto-immune related diseases. Contact Dr. Russell Dale. He is in Sydney. He is with the children's hospital at Westmead and teaches at Sydney Medical School. I have corresponded with him several times and he is most helpful. He is very familiar with PANDAS. He has done lots of research. He will help you. Being in Australia, you are the best hands with Dr. Dale. Even better than in the United States. I have told him I would fly to Australia in a heart beat if necessary. Contact him today.PM me if you have any questions. I have his contact information if you have trouble finding it. Dr. Dale wrote the text book Inflammatory and Autoimmune Disorders of the Nervous System in Children. You are SO LUCKY to be in Australia!

bumping

I sent my son's video out to a few people on this forum who I have connected with personally. People who I trusted. I am devestated that someone shared my private link on facebook. I TRUSTED YOU. Whoever did this should be ashamed of themselves for not asking my permission. I am appalled. My judgement of people is way off. Take it off your facebook pages and tell others to do the same. What are you thinking? How would you feel if someone did that to you. My God, you would think that people going through similar suffering would have some morals. Shame on you,whoever you are, for adding more stress to my life. Facebook? Cheesy Facebook? You want to share my personal suffering with your friends? WOW. I get wanting to educate others on pandas but this is not how you do it. I feel sick. Today, on my son's 9th birthday. UGH@! I am so mad. Take it off facebook!

Jag10 you make an excellent point. Some pandas behaviors are normal in theory yet done so much or with such exaggeration that it becomes abnormal.

Please tell us what you are currently experiencing. My thoughts are with you. Hang in there. Have a friend over. Watch a funny movie.

Wait - are you guys telling me those staring spells are not normal? I thought everyone had them. I have been having them since I have been a kid. Let me tell you - I would never want to give them up. The feeling you get when you have them is total zen. It is the ultimate in relaxation. Your eyes lock on something, they get all glazed over, you eyes get out of focus, you experience peace for a few seconds. I thought everyone did that.

My DS6 always got strep two times in a row and then he would have a hoarse voice for a month after. Why his pediatrician would always start with amoxicillian and then when he got it again gave him augmentin I will never know. You would think he would just go right for the augmentin after so much strep. I took him to the ENT (before pandas diagnosis) and he said that all of the strep makes the larynx enflamed and his voice will eventually go back to normal. Well, it seemed abnormal most of the time since he got strep so much. He barely had a voice. He always sounded like someone who was screaming at a concert the night before. When he got pandas and started treatment with a daily antibiotic, his voice was never hoarse again.

I haven't read all of the replies so forgive me if I am repeating. You might want to PM Tenacity. Her son has the same problem. She told me that her doctor (Dr. L) recommended that each day when her son falls asleep to keep him up and extra hour. Continue this, pushing back his daytime bedtime by an extra hour until he is on the correct nighttime sleep schedule. I know - it sounds good in theory. I haven't talked to Tenacity if this method worked or not and if her son is now on the correct sleep schedule.

I was so bothered by this post. I can't believe that the nurse over stepped her bounds so much. I totally agree with airial95. As a matter of fact, I think airial95 is absolutely brilliant. That letter writing approach is right on. Perfect. A++.

norcalmom - my younger son got the mycoplasma not my older one. My older one just reacted to it. His behavior got crazy. So, I switched his antibiotic from augmentin to azithromax. So both of my kids switched to azith when my little one got myco. Currently,my DS6 is on augmentin. However, if he gets sick and develops pandas symptoms I put him on azith for a couple of weeks. The azith totally takes care of symptoms. When pandas symptoms are gone, I put him back on the augmentin. My DS8, the kiddo that I talk about in this post who had all of the ivigs, is currently on azith. I have decided to keep him on azith for a while. He just does so much better on the azith. I worried about the east coast resistant strains but I really feel like I have no choice - the azith is so much better for my child's pandas symptoms.

Tamistwins - my son had treatment May, July, August 2010. He was steadily improving. However, my other son got mycolplasma pneumonia in November and it caused a rapid collapse of progress. He then got ivig in January 2011 and March 2011. He is scheduled for two more. One in April and one in June. Progress is sawtooth but upwards. According to all lab work, my son is in perfect health. But I do believe that strep caused all of this. We have so much rheumatic fever and scarlet fever in my family. During all of this my younger son also got PANDAS. My younger son, DS6, got pandas last summer. After his 11th bout with strep throat, he started to not feel clean enough after he went to the bathroom. He changed his clothes all of the time because they were "dirty". He started to spit out all of his food because he felt like he was choking. He didn't eat solid food for one month and was in a state of crisis. He was treated quickly because I knew what it was. Antibiotics and a month long steroid taper put that son in remission. AFter my older son (DS8) got sick, it was immediately suggested that it was PANDAS. However, his titers were low so the doctor's said that it could not be pandas. My first thought was Lyme disease. I had them check for it when they did a lumbar puncture. He had many tests by different doctors for Lyme, one being a Lyme specialist. The tests were always negative. I had him treated for Lyme disease anyway with IV antibiotics. He did not have Lyme. Honestly, I was very disappointed. I thought we had our answer. I was always a bit crazy checking for ticks. Everytime my kids went outside, when they came in I came them a full tick check followed by a bath. I when I say full tick check I mean that they got naked and I checked their groin, ears, scalp with a special comb. I never found an embedded tick. When my DS6 got Pandas, that really put my Lyme fears to bed. I literally said a prayer to God the week before my younger son got pandas. My prayer was to give me a sign that I am on the right path for treatment with my older son(DS8). The next week my younger son got clear cut pandas. He was "cured" with treatment. I was actually at the OCD conference in Washington D.C. when my parents called me and told me that my younger son is spitting out all of his food. I had just heard a speaker talk about spitting out all of your food as a sign of pandas. Sometimes things happen that are just to much of a coincidence to be a coincidence.

Thanks everyone. And Philamom - when my son gets better I promise you the world will hear about it. His story will be told. By the way, I did not mention that the only thing that preceded his collapse was a dry cough. It lasted about one month. I kept calling the doctors office. They kept insisting that it was allergies. I said that my son has never had allergies before and I thought this was unusual. I wish I would have insisted on bringing him in. I wish I would have insisted on a strep test. They never did one. Even during his collapse when he grabbed his throat and said it was so sore.

My son, previously healthy and happy and totally normal, became sick at age 5. It was overnight and dramatic. It started with a severe headache. He had a rash all over his back. He had spots in front of his eyes. He developed severe chorea. He hallucinated both auditory and visual. He said there were lines in front of his eyes. He asked me why everything seemed so big and so small (Alice and Wonderland effect). He asked me why a guy was whispering in his ear. He asked me when this dream was going to be over. He said his throat hurt. He said his knees and feet hurt. He said that there was a video going through his head. He lost his language. It started that he just would not talk much. Then, he couldn't remember the words for things, "What's the word Mommy." He became autistic with a twist. He knew what was happening. "I have a terrible sickness Mommy." "Fix my brain" His words then started to stutter. Then gibberish. He got severe OCD and tics. My son was one of the most severe pandas cases his neurologist has seen. It went untreated for 2.9 years. He was on antibiotics for three months before IVIG. He has had 5 IVIGs (2gr/kg), the last one March 15-16. I want you all to know that IVIG WORKS. Multiple IVIGs WORK. My son is getting so much better. It is so exciting to watch. It has been almost 10 months since his first IVIG. Progress happened after each one but it was slow. After the 4th and especially the 5th IVIG he seems to be taking off. Don't despair people! This is a long road but your children will get better! Believe it! This morning my son woke up with a smile on his face and said, "I want to go to school". How about that! The boy who became mute now talks!

Everybody's body is unique. That is why when someone gets blood work done, there is a range of normal...and what could be very normal blood work for one person could be very abnormal blood work for another. There is a wide range. Just as I have a very low blood pressure and pulse -someone else's normal would be high for me. So, when you think about what percentage of the population actually has an EEG - how many do you think that is? I would guess that is a low number. Most people will go through their entire lives without an EEG. (Unlike blood work, most people will have blood work) So really, if I were playing devil's advocate, how do they really know what normal is? I read someone on this board say an EEG is just a picture of a particular moment in time. I though that was great. No one wants an abnormal EEG. Even if we are all confused that we are seeing abnormal behavior. We don't want an abnormal EEG. Usually, scary things come from abnormal EEGs, unless they don't, in which case it may be someone's "normal". Emerson, you are right, seizures are hard to miss on an EEG. Although it does happen. A neurologist told me that sometimes there are seizures deep in the brain that an EEG will not pick up. In these cases, they will either offer a patient a scope up the nose to detect a deep brain seizure (it has its risks) or they will put the patient on a drug like Depakote (is that the right spelling?) and see if it works to stop the patients symptoms. I am not so sure that I do trust that an EEG shows that something is amiss in the brain. Or even an MRI for that matter. If they are both normal and there are obvious symptoms of a personality change, what does that tell us? On the hopeful side, it tells us that there is no brain damage. On the pessimistic side, it tells us that human science has not caught up with human pathology.

My son's dose is 2g/kg. His first three were May, July, August 2010. We had steady improvement until my other son got mycolplasma pneumonia. This causes a rapid collapse of progress. His neurologist decided to blast my son's immune system with ivig every 6 weeks for 6 months. This comes out to 4 more ivigs. We just finished up ivig number 5. I don't know how long your friend's son has had pandas. It seems to me, that pandas caught within the first year can be taken care of with antibiotics, steroids and if that doesn't work one or two IVIG's. However, the long term severe cases have not been studied. Perhaps long term mild/moderate cases can be treated with only a couple ivigs. Who knows. All the doctor's are just guessing as to how many ivig's are needed. Dr. K, who is not our doctor, seems to have the most experience with pandas, but even he does not have a 100% remission statistic. I believe doctors are now experimenting with ivig to get the 100% remission. Sadly, our children are all in the experimental group. My son has shown steady improvement, but it was ivig #5 that showed the most dramatic improvement (and it has only been 10 days since he got it). His teacher said to me on Friday, "I can't wait to see what happens after the next ivig." It is very exciting. We have come so far during these past 10 months. 100% remission seems like to much to hope for in our case. It seems like it would take a miracle. However, lately I have been finding myself thinking that maybe, just maybe, I will get my miracle. ( And I just got a chill up my spine as I typed that...)

Not locally. He gets them at Georgetown. He has had 5. He has two more scheduled.

My dermatologist said that she had met many patients who have been on strong antibiotic for acne for years. She doesn't recommend it but lots of dermatologist do it. As for the multiple ivigs, I guess no one is really sure if it was just the first one continuing to heal or multiple ivigs blasting the immune system. We noticed improvement after all of my sons ivigs. However, number 5 was the most dramatic and quickest improvement.

eljomom - he did not discuss treatment protocol with me. I did not mention pandas because I did not want to scare him away. The only thing he mentioned in his papers are that steroids, ivig and plasmapherisis are the main things used to treat.

Yup, seizures. Did you get it at Penn? You can get a copy. I have one on disk. You just have to make a call to the records department. They will make you a copy.

My son's EEG's were always normal. He too had those staring spells. However, it took a full year before someone looked at the EEG report and said to me, "Well, the first EEG showed some abnormal slowing." No one told me that. All that said was that it was normal. So the EEG wasn't perfect. There was slowing. Perhaps there is a range of normal. Perhaps we as parents have to be more specific and ask the doctors if there was ANYTHING out of place on the EEG. Anything that might be considered a little abnormal. Different doctors have different interpretations.

Philamom, No, he is not helping with IVIG. I go to my pandas doctor. The treatment for pandas and anti-nmda receptor encephalitis is basically the same except there are no antibiotics given daily like in pandas. Just IVIG, PEX, steroids and there are two other drugs that have worked for some people - cyclophosphamide and rituximab which I believe are cancer drugs. However, I have to double check that. Perhaps those drugs were only given to the cancer patients. You touch on a reason why this research is important. If you get this diagnosis, no one will have a problem getting ivig or pex or anything else related approved by insurance. It is 100% insurable.

There is a doctor at the University of Pennsylvania named Joseph Dalmau. He recently co-wrote the article The Emerging Link between Autoimmune Disorders and Neuropsychiatric Disease. It was published in the winter 2011 edition of The Journal of Neuropsychiatry and Clinical Neurosciences. If I was able to create a link I would post it here but I can't. This stuff that he is researching is very important to PANDAS (in my opinion). He discusses what is called Anti-NMDA receptor encephalitis. What he basically talks about in his articles (there are several) is that he found that when people have cancer/tumors that get crazy. He has done research and has found that this type of encephalitis (which is called auto-immune encephalitis) is occurring in children after an infection, not just cancer. If after a person experiences personality change after an infection and they get a spinal tap done to test for these specific antibodies they can get an accurate diagnosis and the help that they need. I spoke with Dr. Dalmau last week. I told him that my child was a CHOP in 2007 and asked if he was tested for these antibodies. He said, "NO". The test did not exist in 2007. I asked if my son were to be tested now, would these antibodies be there. He said, "most likely, no." He said that over time these antibodies disappear or become much harder to find. It is important that this test be done soon after the personality change take place. Treatment suggested is aggressive and the longer one has it the more aggressive one has to be. Steroids, multiple high dose ivig (he recommends 2gr/kg) need to be administered. Healing,with treatment, can take a long long time. As much as 5 years. BUT- healing does occur. So, I believe that this new science and research is very very important. However, it is 100% an auto-immune disease. I DO believe that Lyme disease is real. I also believe that there are a lot of false positives. I just want parents to be very very sure what path they are on in treating their children is the correct one. Because if you decide to treat for Lyme disease with flimsy test results, you could be avoiding the very treatments that could save your child. Now, I don't want everyone to "hop on one foot" after reading what I have just wrote. I am sharing information that I think is very important. If your child has an auto-immune disorder you WILL need steroids. IVIG may be very very necessary, and more than one of them. As far as I know, University of Pennsylvania is the only place that does this test. Google Dr. Dalmau. He has several published articles.