PhillyPA

Yup. The same thing happens to my sons when they are in steroids. They get up to pee in the middle of the night. It is a lot of pee too. Steroids can cause the spilling if sugar. Nothing to worry about. It will stop once the steroids stop.

Kids with auto-immune encephalitis like NMDA encephalitis can receive high dose steroids, every month via an iv, for longer than a year. There is no infection. It just takes that long for the swelling to go down and stay down. It is an auto-immune process. It can take that long or longer for the inflammation to go down. This is inflammation that in a majority of cases is not seen on an MRI. Steroids are used to reduced inflammation in most auto-immune disorders. I know this is not your case because your child has Lyme disease but I wanted to pass along the information.

As a side note- my husband's brother was on the 101st floor of the second tower. He was only a handful of people who survived from his firm. He made it to the 40 th floor before the plane hit the second tower. It is a long story. We didn't hear from him for 24 hours. The day was so very traumatic. There are many many elements of post traumatic stress that last to this day. For me - I can not re- live it with ceremonies and tributes. I am unable to handle it. I would break down. I use to travel by plane often. I have been unable to fly since that day. On sept 11 this year I will avoid the tv and skim past any article about 9/11. All day I will expect to feel like I am going to vomit.

I have no intention of bringing it up with my 7 and 9 year old. They barely watch tv so they will not even know about the nickjr show. I am not going to any scheduled events in the community. They are to young. My seven year old would worry. I remember as a child my biggest fear at night was that a plane would crash into my house.

I would encourage anyone in the Philadelphia area to give CHOP another try. The tide has changed and they are much more open to PANDAS and auto-immune disorders.

Does your son still read and write? Does he still attend school? How is his cognitive function?

Have you tried a 3-4 week steroid taper? These steroid tapers feel like a miracle. I would try steroids before I hit the ivig. Not that you have anything to fear with the ivig - I would just try the steroids first.

I can not believe that Josep Dalmau is speaking at this conference. Can't believe it. I am strongly considering attending it just to hear him speak. He is "the" NMDA expert. Saved many lives. I can also say hello to my son's old Lyme doctor. As you all know, my son tested negative many times for Lyme and other tic borne illness. I am 110% confident that a tick bite is not my son's problem. I am however curious about how most people on this board feel about this conference. It appears to be run by the University and Doctor that gave me the all clear for Lyme. I received many PM's from concerned forum members questioning this famous Lyme doctor's diagnosis and methods. I was told in a round about way that people on this board disliked when I mentioned my admiration and trust in this particular Lyme doctor. So my question is - is this Lyme conference something that is considered "a good thing to attend" or is this conference "no good". I am so curious because of who is running the show at this conference. I am asking this question without a bit a sarcasm, contempt,or obnoxiousness. I know that it is hard to read people's intentions via the written word. I have been critiqued in the past about my written word and my intentions and I was clearly misunderstood. I ask this with a pure heart.

PANDAS is curable, especially if caught early. If your son still has strep or the tics ask for azithromax. It could be a resistant strain of strep. Azithromax, for many will do the trick. What I believe for my son that takes him quickly out of episode is a month long steroid taper. He is also on augmentin every day to keep strep away. My son remained symptom free for a year. He had another episode this summer after he got his tonsils removed. Another month long steroid taper. He is perfect. Steroids, in my opinion, are key. You just have to keep on it. At first signs of relapse, get that steroid taper. This is just my opinion as to what has worked for us. My son was treated very early. He was diagnosed within one week. This is because his brother has severe pandas and we knew what it was.

I would recommend that you try the spinal tap again and insist on sedation. If your child is sedated the spinal tap should be no problem. It is important to get that spinal tap to rule out different types of encephalitis, including NMDA encephalitis. PANDAS is a type of encephalitis but there are others that can only be found via a spinal tap. It is that facial grimace that has my red flag going up.

I am not clear - do you have an appointment at CHOP? Start there with the Dr. that you mentioned. Let us know how it goes.

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I agree with POWPOW - a three or four week steroid taper should do the trick. Also, if you can get them, a penicillan shot in the rump. Those things are awesome.

LLM - beautifully written. When I need to get sane, I take my pandas son out. My son always liked to go out and do things and it is one thing pandas has not taken away from him. Take him to a restaurant - he is perfectly behaved. Take him shopping while I look for clothes for ME-he is patient and happy. Take him to the grocery store-super helpful. Take him out in the city-loves it. Keep him inside-he goes insane. I remember during his overnight onset he said, "I have got to get out of this house." It has never changed since then. I think he is scared of the house and his bedroom because of all of his hallucinations during onset. He now sleeps in the guest room. I also get lots of "me" time. My husband and I are selfish and spend lots of time with each other without the kids. If we didn't - we would go insane. And JAG10- I totally agree with everything you said. I was laughing reading it. You live my life.

You could ask Dr. K what he recommends. Perhaps he will advise you as to what he recommends for his patients. Augmentin and azithromax are the two the are used to treat pandas the most.

I just saw this today in an article about a new cancer treatment. They didn't use the term herxing but that is what they meant. They described it as receiving the treatment, then after a couple weeks feeling like you got the worst flu ever, then remission. They said that the feeling of the flu was the mass die off of all the cancer cells. It is getting worse before you get better.

Dr. L is our doctor. I must politely disagree. I don't think it has anything to do with bad behavior. She is extraordinarily busy. The best way to reach her is to make an appointment with her. I know how really difficult that is when you live half way across the country. It seems nearly impossible to schedule follow up appointments every two or three months. However, that is what needs to be done. If your child is in an acute pandas episode or not yet back to baseline, the child needs to be seen by a specialist often. If you don't see the doctor often, it is uncomfortable for a doctor to change up meds over the phone. I sympathize with you and your situation. Having a very ill family member and then having to deal with pandas - UGH...

This was the same dosage my son had when he was 6 and weighed 45 lbs. It is also the same dosage he is now on at age 7 weighing 50lbs.

Did you ever get to see Dr. Dale?

Lyme Mom, I hear what you are saying. Everyone has their own journey. When my son got sick I refused to put him on steroids for a full year. I thought it was Lyme. He was treated for Lyme with IV antibiotics even though his Lyme doctor said he tested negative for all tick borne diseases. This was a "just in case" treatment. More mental torture in my own brain. Me thinking it was Lyme. All test disagreeing. I test for Lyme all of the time. I talked to his lyme doctor and he said stop it. Go down a different path. For my son steroids are awesome. They do reduce the swelling and I am sure it does some other stuff to the immune system too.

The problem is that rashes occur with viral and bacterial encephalitis as well as Lyme disease. Positive test results make decision making so much less complex.

My son had a bells palsy when he first got sick. It actually wasn't an official bells palsy. It was more like facial twitching. My husband is a physician and when it happened he said it looks a little like a bells palsy but he did not have facial drooping. CHOP did a spinal tap on my son to check on for lots of things, one of them being Lyme disease. Logically, one would think that at the height of neurological symptoms, at acute onset, Lyme disease would be present in the spinal fluid. We didn't stop there and have had many Lyme disease tests since then but that is another story. Recently in June, we had his spinal fluid checked again at CHOP. Anyway, my point to this reply is that many things can cause a bells palsy. My first reaction to this, seeing that she was positive for Herpes Virus, is that giving steroids was the right thing to do. Although I am well aware that Lyme symptoms and other disease symptoms overlap, we have to be cautious. Herpes virus, with swelling hands, with neck pain, could lead to Herpes encephalitis which can be devastating. I think she was right to go on the steroids quickly. If it turns out to be Lyme, she can cross that bridge later. My opinion is that you have to treat the worse case scenario first which is Herpes encephalitis. Has she had an MRI? I can't believe that CHOP wouldn't do an MRI to rule out possible Herpes encephalitis. That would be my number one worry at this point. A friend of my family had a bells palsy and a bulls eye rash all in one weekend. Within 24 hours she got so sick she thought she was going to die. She was violently ill. It came on so very quickly. I can't believe that she didn't go to the emergency room. That she waited until Monday to go to the doctor. People just don't get the seriousness of Lyme disease. My God, If I saw the bulls eye rash and my face started to droop, I wouldn't continue to make dinner and wait it out. Luckily, she is all better now. She had a course of antibiotics that took care of it. I find it so interesting that for some people a regular old course of antibiotics take care of Lyme and for others it is a battle. I know at least ten people who got the bulls eye rash and then recovered quickly with antibiotics. I think you are lucky if you get the bulls eye rash. I think that means that you have a working immune system and that you will respond well to antibiotics.

http://www.forbes.com/2010/01/12/autoimmune-disease-hallucinations-lifestyle-health-medical-mystery.html Above is a link to an article about GAD auto antibodies.

My son has a bad reaction to fish oils. Since he has been sick with pandas - he has also developed an allergy to shrimp. MaxParkersMom I am curious who is your son's neurologist? You can private message me. (Top right corner by your name in case you are unsure or just click on my screen name PhillyPA and send me a message) I think it is great that your son is doing so well. I also think it is great that you got a neurologist to give you full strength azithromax for such a long time. What part of the country do you live?

Denise - I am so happy for you. Auto-immune disease is horrible. So very glad that she is so much better. You will get to 100%. It will just take a little time.