PhillyPA

I second the "I Love Smarty" post. Smarty - you are smarty. Very wise advise.

Times have changed. Dr. E at CHOP is a pandas supporter. It just may take a long time to get to see her.

You have never tried steroids. Before giving up I would at least give a three or four week steroid taper a try. I would stick with the entire taper. Remember the first week may swing up and down. It does for many. Call Dr. L's office and ask for that steroid taper. Tell Andrea that you were there and you want the script for the taper without having to travel back to see her. Give it a shot. OR perhaps Dr. B does tapers, I do not know. But I would do it for longer than a 5 day burst. You want the month long taper. See how your child does on this taper before making any decisions. This is just my opinion. I offer you what I would do. Sometimes those steroid tapers work miracles. I have seen it!

I don't want to scare you. I do want to stress seeing a pandas specialist and not wasting time. My son was a healthy happy five year old when he got pandas. He lost his language. We went to CHOP, Harvard, DuPont, Columbia and consulted many many other physicians. At the time, I knew of no pandas specialist. They all said his titers were low so it could not be pandas. In a desperate attempt I had my husband write a script for regular old amoxicillian. He got much much better. I told all of the doctors I saw that he gets so much better on an antibiotic. They said it had nothing to do with him getting better. We took him off. Downward spiral. In hindsight I always think to myself, "if only". If only I kept him on that antibiotic. At the time, I knew nothing about the treatment for pandas. This was 100% maternal gut instinct about the antibiotic. A little voice in my head kept saying antibiotic. If you knew what could be in store for you, you would lie like a sociopath to get those antibiotics. Call Dr. T. I have no experience with him. I only heard that he will treat very quickly. Also, the fact that his tics went away will lure you into the false sense of security that this bad dream is going away. In reality, the fact that the tics went away reconfirms the pandas diagnosis. It waxes and wanes. And when it comes back, it will come back with avengence. Again, I don't want to scare you. Doctors are much more informed that when my son got sick in 2007. You must see a pandas specialist. Don't waste time with other specialist. Get him on the antibiotic and then see the neurologists for the MRI, EEg,etc. Get the antibiotics first.

I am so very sorry for what you are going through. Please pick up the book Saving Sammy by Beth Malony. The book describes what she and her son went through getting help for pandas. I will send you a private message. Check the upper right of this screen and you will see where you have access to private messages.

My heart goes out to you. I have often said that my older son saved my younger son's life. Because we knew about pandas, we knew what my younger son had immediately. He was treated early and is happy and healthy today. Consider it a "blessing" that you knew what to look for. Your daughter is very "lucky" that her brother got pandas first. AND - on top of that that her parents were astute enough to know what was happening to her brother at such a young age. The glass is always half full...

I am recommending an interesting read. Encephalitis Lethargica: During and After the Epidemic by Joel Vilensky PhD In the beginning of the book it lists all of the diseases that look like Encephalitis Lethargica. The list takes up an entire page. Pandas, Lyme and mycoplasma are all listed. In case some of you are unfamilar with Encephalitis Lethargica - think of the movie about Oliver Sacks book The Awakenings. The patients in the book/movie suffered from this disease. Great read. If you want a page of disease to rule in or out this is the book where you will find them. The case studies were eerie. The similarities to many to mention.

This summer my then 50lb son received a higher dose of steroids than your son. His first week started with 40mg per day. Your dose is not really high.

Philamom - I agree with you. My line of thinking was for pure pandas cases only. And you are right, every case may be different. That is why I think a study should be done. Co-infections, Lyme disease - that complicates everything in terms of steroid use.

Gosh sorry about your experience and your son's suffering. Didn't realize my post would stir up so many negative emotions for you. No worries pandas16. No negative emotions were stirred at all. I write my experiences without any attachment to negative feelings I may have felt in the past. I am a happy happy person!

They sure did speculate. I got speculation from the top dog. I will pm you who told me this... The vaccine creates a diversion for my son's immune system. It gives his immune system something else to focus on. Therefore, we see healing of pandas symptoms. Crazy, huh? I feel like the only person in the universe who's child does really well after a vaccine.

This side effects seem pretty normal to me. My sons both experienced, moon face, weight gain, and frequent urination at night while on steroids(two-three times per night). It will go away. As long as there is no spilling of sugar, he is fine. I am curious about your son's weight and dosage...

My son's homeopath was considered the best of the best. He did specialize in developmental disorders but at the time I did not believe my son had a developmental disorder since he was a totally normal five year only a few months prior to our visit. His remedy was belladona. The antidote was to rub vicks under his nose. He came to the conclusion that my now non-functional child needed belladona because my son would talk about God a lot. He would pray to God for help. Perhaps it is correct to say that some are obviously better than others. But my mouth is sour at the mention of homeopaths because of my experience. I would never even attempt to try a homeopath again because they scare the heck out of me. Our homeopath, who came highly recommended by many many people was also a M.D. I thought that also gave him even more credibility since he had been through medical school. He was also a DAN! doctor. What I took away from that experience was that homeopath's were wackos that caused destruction and not healing. I admit that that is sterotyping based on my one horrible experience. But - it is what it is. This post is in no way intended to offend anyone who has had great success with homeopaths. I simply share with you my experience. On the flip side, and I have mentioned this before, my son does amazing after he gets a vaccine. That is my experience. However, I completely understand why others choose not to get vaccines. They have a different experience. The human body and the way it works in each unique individual is remarkable. It really does show that no two people are made alike.

I am very happy for you pandas16! That is wonderful news! I know that lots of people have had great relief from homeopaths. Just want you all to know my experience. Took my one son to a homeopath. He got much much worse and stayed worse for a long long time. I would never ever go back. It was an experience that I get angry thinking about to this day. Everybody's experience is different. What works for some people makes others have a horrible reaction. Homeopathy is not benign. I don't want to diminish your amazing experience pandas16. I truly believe that homeopathy works for you. But it did not for my son. I believe it did him harm.

I have not read all of the replies to this post. Mostly just skimmed them. Here is my 2 cents... I don't understand why steroids both oral and iv are not standard treatment for pandas kids. Steroids are cheap, cheap, cheap and they work. My 7 year old has been on two steroid tapers. Those tapers saved him. The antibiotic killed the infection and kept him from getting strep. The steroids jumped started his engine. They provided amazing healing. When he got pandas at age 6 he spit out all of his food for three weeks. At the end of the third week of steroids he just woke up and said "mommy, I can eat again!" His OCD stopped. He was back to himself. He got his tonsils out this summer. Had a horrible pandas episode. Had a four week taper. He is 120%. Personally, I think the build up of steroids take some time. You notice small little changes and then bam! recovery. Then, they just get better and better and better. Things that you never even really noticed were a problem were gone and this beautiful child emerges. Steroids are key. I do not understand why more doctors are not using these all of the time. This is where there should be a study. Antibiotics, I do not believe are the cure. Antibiotics are important so your kid doesn't get strep again. My pandas children always improved with antibiotics but the engine only started with steroids. Next time you see your pandas doctor, if you decide you want to go down the pandas route, ask for a steroid taper.

This is what she did: Cognitive Behavorial Therapy Naturopathic remedies Diet of little wheat and dairy Removal of ALL nightshades OCD behaviors decreased over 4-5 month period. Still on a reduced dairy, wheat, and nightshade diet but not super strict. No strep since that time. No increased anxiety with illness or colds. She credits the cognitive behavioral therapy as being extremely helpful.

As I am sure many of you may have noticed, I don't even bother caring about spelling anymore. Peggy, I feel your pain. The only suggestion I can make is to get Ally sedated and get her a spinal tap to check for EVERYTHING!

I will check into all of your questions and get back to you. Her children have always been home schooled so their contact with other kids is minimal.

No symptoms of nightshade allergies. Just OCD,especially hording, and tics. Her son was and is completely neuro typical. This was sudden onset.

I am passing along information that has helped a friend of mine. Her son was never diagnosed as pandas. However, after repeated strep including peri-anal strep that took several rounds of antibiotics to get rid of - her son developed severe OCD, tics and hoarding issues. Her son was never put on preventative antibiotics. He still is not on them. The only thing that she did was to remove all nightshades from his diet. In her words, this cured him. He has been symptom free for two plus years. He still eats no nightshades. I thought it was an interesting story. I am passing it along to all of you. For the record, I am not doing this diet but I thought some of you might be interested.

Bone marrow black with inflammation sounds very very serious. I have never heard of that before. How did you get that diagnosis? Did you have to rush him to the ER, was it his pediatrician, orthapedic surgeon, or Lyme doctor. Did he have to have it biopsied? I am so sorry that your summer has been so difficult. Your experience must have been very scary.

Feb 2010- must have been the same snow storm JAG. That's when we got our canceled appointment. Listen to Beesknees and Jag10 because I have no experience with the ER. My line of thinking is that if your child is really really bad. Personality change, not sleeping, sudden onset, loss of language- something like that I would suspect that they would admit. They would want to check for seizures or encephalitis. As a matter of fact, I would assume if you said to the ER that your child has had a sudden onset personality change - they would have to admit. That is serious and an immediate cause for investigation. But please - don't come back and yell at me when you have waited 6 hours in the ER and they tell you to go home( ha, ha).

I drove down to Dr. L's office the night before a snow storm. I knew that the D.C. area would have no clue how to handle a big snow storm. I knew there would be cancellations. I got in. Sometimes just showing up and looking desperate works. If it is bad, go to CHOP's Emergency Room.

Geez-I have got to get my son up and ready for school. I have to be brief... Spctmom, I do so want this to come across as respectful... Your information is grossly incorrect. You make some pretty powerful statements that come across as fact when surely they must be your theories. I am all for thinking out loud and offering theories. We are all moms just trying to figure things out - but make it clear that these are your "guesses". I believe that practically everything that you have stated in your post is wrong. PANDAS that is triggered by strep only is quite common. In my own circle of friends and family I know 8 people who have had strep and then got pandas. That seems pretty common to me. Rare means you can't find anyone else with a similar problem. None of these people are on this forum. They don't have to be. They are all better and have things under control. They also may not even be "forum" people. What percentage of people with medical problems or any problem for that matter do you think seek out forums on the internet and post? Also, have you ever talked to Diana P.? Her son has been "cured" of pandas with two ivigs. I don't have time to get into the whole ivig thing. My child's neurologist, who is not a pandas specialist but an auto-immune encephalitis specialist, said that some people with auto-immune disorders will have to have ivig for the rest of their lives. Lastly, my best friends daughter had cancer. Leukemia. She threw-up after ivig.

My son is on monthly penicillin shots.