PhillyPA

Hi eljomom, I once went to a conference and the speaker said, "Ok, I now want everyone in the room to hop on one foot." Everyone in the whole room hopped on one foot but me. I didn't do it because it didn't make sense to me. That experience was very good practice for this forum. When you have a room full of people whispering Lyme, it is very difficult to not to want to buy into it. Especially if it can save a life. For many a Lyme diagnosis will save lives. But it won't save my son's life. He has an autoimmune disease. It doesn't matter how much I want Lyme disease to fit it just doesn't. A Lyme disease diagnosis offers more hope. Not only could my child get treated for pandas but also lyme - that is double hope. Two teams filling my child with miraculous and life giving antibiotics. Something in this combination will surely work... However, I stopped hopping on one foot. I am standing still. My son has an autoimmune disease and I am very grateful that I stayed on the path my gut told me was right all along. Instead of Lyme treatment, he is getting autoimmune encephalitis(pandas) treatment. He is getting multiple high dose ivig's and he is healing. With each one he is healing faster. If I would have changed course, I could have ruined my son's chance for recovery. Steroids. To think I would have given those life giving drugs up. High dose ivig's - pretty much gone. I shudder to think if I made a different choice. I just sat back and thought about it, looked at the evidence for my kids, and made my decision. I don't come on this forum like I use to. I use to come on this forum for support and to share my questions. However, now the forum is stressful for me. I see well meaning good hearted people sharing Lyme stories on the pandas forum. I see newcomer getting confusing and conflicting advice. I don't understand why the pandas forum can't be just about pandas. If people are smart enough to find this forum, they are smart enough to notice the Lyme disease tab and click on it if they have questions. All of the Lyme responses to people's pandas questions is quite frankly, annoying. It is making everyone hop on one foot. Panic,panic, panic. Lyme deserves to be investigated and discussed on their own forum. I feel your pain eljomom. I have been there. I have talked to you before via pm. I know who your pandas doctor is. Trust her. Ok. Back into hiding for me...

Google IVIG. Do some research on it. Take pandas out of the equation. If someone has auto-immune disease or encephalitis, ivig works best if given within the first 18 months of illness. After that it takes more ivigs and it takes longer to work. The dose that is recommended for autoimmune disease is 2g/kg.

I would remove the addiction.

Have you checked to see if you have extra ribs? I have two extra ribs. This causes nerve pinching/numbness in my hands, arms and neck. The extra ribs would be at the top,closer to your neck. You can see mine but in some people you can only see them via x-ray. My were confirmed via x-ray. I get that pinky numbness too. If you push on the extra ribs, near your neck, you get a big, uncomfortable zinger like feeling.

Pandas16 - I have another one of my theories...I believe that the strains of strep change and morph as the years go by causing more and different types and often more severe symptoms. I am 100% certain that I had pandas as a child. I am 40 years old. From 1972-1978 I was on an antibiotic every month for two weeks out of each month. I had strep a lot. In the 70's they gave antibiotics out like candy. Not anymore. It is very strict because doctors fear super bugs. I got my antibiotics for unexplained fevers. I hallucinated. I had night sweats. As a small child I didn't want to go to dance class because I thought I looked fat in leotards (I was stick thin). In 1979 I got pneumonia and my brother got his tonsils out for chronic strep. As soon as my brother got his tonsils out, my fevers went away. In high school I developed very minor OCD. Checked the stove every night. Made sure cabinet doors were closed. Under stress, I couldn't handle any object or corner pointing at me. I would suffer from leg pains that were very painful. I never said a word to my parents. In college, it all went away, on its own, quite suddenly. It went away soon after I grew an inch in college. I guess it was my final growth spirt. Unusual for a girl to grow in college but I did. My mother, who was an RN at the time, showed me the detailed charts of my illnesses. She wrote down everything. There is no doubt in my mind that I had pandas.

My son is doing great! I do not know why Dr. L did not go for the steroids for your son immediately. But you have to send her an e-mail and check the steroid dosage if your son's weight has changed since the script was given to you. I felt that the steroids were really the miracle drug for him. He got the augmentin too but I think it was the steroids that brought him out of it. He does get mild pandas behaviors after illnesses but they don't last long and he does come back to baseline. My son was spitting out all of his food because he felt like he was choking. He also got abrubt on-set OCD. It all followed a strep throat infection. He had strep about 10 times between the ages of 2.5-5 years old. My other DS8 also has pandas that he got at age 5 and progressed into a nightmare so Dr. L was clear about what we were dealing with and wasn't taking any chances.

I think it depends on how severe the encephalitis episode is/was and how long before treatment started. I believe that I will know in about a year if it is permanent or not for my DS8 who got sick when he was 5. I believe that if you aggressively treat for about 2 years without full remission you are either dealing with a permanent pandas condition or it wasn't pandas to begin with. And I have nothing to back up my theory. These are just the thoughts going through my head.

Call or e-mail Latimer's office. She usually does one month of tapered steroids. Did she do this for your son? The tapered steroids did the trick for my son. E-mail her quickly and let her know what is going on. Ask her about the steroid taper. My DS6 pandas was caught within a month in July, 2010. She put him on antibiotics and a month steroid taper.

norcalmom - Thanks for the information. Yes we tested my DS8 for Lyme. Yes, we tested for mycoplasma. CHOP tested for the mycoplasma. About 5 doctors tested for Lyme. All negative. My DS6 pandas started with strep and is completely under control. He gets perfect test scores, is extremely well behaved. His teacher said not only is he extremely well behaved but he is also shows a lot of leadership qualities. He is totally fine. Yes, he got mycoplasma pneumonia this past Novemeber and he DID react to it, but he is completely recovered. I have zero worries about him harboring a chronic infection. So far, if he gets sick, we know our plan of attack and it can be treated. My DS8, I believe started with strep. He and his brother were both sick at the same time. His brother tested positive for strep and he did not. I think it was a poorly done swab. I think he had strep. But - before his collapse, he did have a cough that would not go away. Mycoplasma, although he always tested negative, has been a worry. But, it could have been strep pneumonia. His MRI showed a sinus infection. So, it could have been strep in the sinuses. I am curious, how do they treat chronic mycoplasma infections?

My DS6 who got the mycoplasma never had IVIG. His pandas was caught early and it is manageable. He is on augmentin daily. However, when he gets an illness and starts pandas behaviors he needs azithromax to really pull him out. His doctor put him on azith for 5 days because of the myco. I then put him back on augmentin. The augmentin didn't take care of his pandas behaviors so I put him back on azith for about three weeks and the azith pulled him out of it. It took about 6-7weeks for all the pandas behaviors to go away. After the pandas behaviors went away I put him back on the augmentin. The goal of the augmentin is so that he does not get strep. However, if he does get an illness, the azith gets rid of his pandas behaviors and he gets back to baseline. My DS8 had the IVIG. Is he back to baseline - no. He had serious encephalitis-like regression from PANDAS and he had it for 2 years and 9 months before diagnosis. He got pandas at age 5 and he is now 8 (almost 9). Picture it like this - Picture a country after a devestating earthquake and the whole city is flattened. That was my son's brain. After IVIG several houses are rebuilt and progress is being made but the whole city is no where near being rebuilt. IVIG helped him very much. It provides him much relief. However, normal for us is the way he was at 5 years old. It was the whole beautiful city. It is hard for me to say what percentage better he is because he is not back to baseline, no where near it. For me nothing is acceptable except baseline. IVIG allowed the workers and equipment to get back into the city. Some houses were built, we got water running again and a steady stream of food. We have beds and a comfortable place to sleep. However, the subway is not up and running and I would really like to tour the city again. It is just going to take time to rebuild. My other son's mycoplasma crashed my DS8 progress. That is why we have to do another round of IVIG. Although he did not get the mycoplasma, he reacted to it. When he started to get a cough like his brother's, I quickly put him on azith. It helped but he still needed another round of ivig. He had his first at the end of January and he goes back for his next one next week. He is back on the upward trend. IVIG is really remarkable and he starts to get relief immediately. (Well, after the 24 hours of a headache and vomiting.)

They do not know why that happened. I didn't ask the lab, I asked his pandas doctor. No idea. However, about a week after his blood was drawn his brother got mycoplasma pneumonia. It caused chaos for both of my pandas sons. I don't know. Maybe it was just demonstrating the battle going on in his brain. Maybe it is like that for everyone. Who get's the Cunningham test that often? Technically I don't think you are suppose to get the Cunningham test until 12 weeks post ivig so we did get it two weeks earlier than we were suppose to. But, I wanted a new lab report to be available for our next appointment with our pandas doctor/neurologist. I plan on doing it again after this next round of IVIG's. I think I will e-mail the lab and ask them about it. I will let you know what Cunningham tells me.

Three ivigs (2gr/kg) from May 2010-August 2010.

The first time we took the test my son's CAM Score was 161 and his antineuronals were the highest end of normal. After three ivig's we took the test again. We waited 10 weeks post his last IVIG to test. His CAM score came down to 149 and his antineuronals were ski high.

I think you handled that situation like a genius. Well done!

I would highly recommend staying as far away from CHOP as possible. When my son's personality changed overnight at the age of 5 after a rash and a headache (this was in 2007) she told us that it was childhood onset schizophrenia and wanted to put him on schizophrenia drugs. I said no. They did think PANDAS at first but when his titers were low they said it could not be PANDAS. CHOP will only cause you anxiety and stress. They are experts in childhood cancers, not PANDAS.

Half Italian, Half German. My great-grandparents on my mother's side were Hasidic Jews, so I have Jewish ancestory.

Adam I have heard amazing things about Dr. Chugani. I was recently discussing this doctor with Diana P and he is one of the only people able to scan the brain/basil ganglia the way he does. It is a lot of radiation so I hesitate to get involved in his research. His research will be so valuable to PANDAS. I know that in theory pandas does not cause permanent brain damage but I guess we will all see if that is true in the years to come. I am curious - what does Dr. Chugani believe that outcome will be for your child? How long has your child had pandas?

No.

Have you tried steroids? How was her reaction? My son did really well on steroids. Steroids make him sleep really well. Steroids make my son relaxed and calm. After his first round of steroids (month long taper) in March 2010, he never had sleeping problems/night wakings again. Ironically, if you give my son valium, he will be up all night.

We had my son checked for Wilson's disease before we pursued PANDAS. I agree that this is something to rule out. It has similar symptoms.

My son's pediatrician told me that if a child is on antibiotic and is being tested for strep, there is a "stronger" test that they use to determine if strep is present. They have to let the lab know that the child is on an antibiotic so that this stronger test can be performed. My pediatrician office never does the rapid strep test. This isn't just for my kids, this is for all of their patients. My one son, who was diagnosed early for pandas and treated quickly, gets pandas symptoms when he gets sick with both bacterial and viral infections. He is on an antibiotic and will be until his 20's. His pandas symptoms after exposure to illness last between 2-6 weeks. It seems as if the more time that goes by, the pandas symptoms after illness last less and less time. But again, he was treated early for pandas (within a month of symptoms) so his immune system did not have a long time to really crash and become chaotic.

How do we know how to dose this NAC? Is it on the bottle? Does it come in liquid? My son use to do the hair pulling and eyelash pulling. It did stop after his first ivig. However, now we have something that is in the same "family" of OCD. He rips apart his fingernails until they are so low that they bleed. His fingers look horrible and I am worried he will lose all of his fingernails. I have tried wrapping them up with bandages or bandaids. He will take them off. It is troubling.

Momofgirls - I am quite sure that you are in good hand with Dr. J. I am simply relaying a phone conversation. Not meant to challenge any one. It is my deepest hope that everyone's child is cured from their sickness. We all just want to be on the right path. And really, I am quite ashamed of myself. I should know better then to post anything Lyme related. That's like saying I want a dictator to be in charge of Egypt. A revolution is bound to erupt! In the future, I am going to keep my information to myself. I feel really stupid for sharing. Never again.

Philamom-no offense taken. You are not disagreeing with me because I know nothing about Lyme disease. The person you are disagreeing with speaks at all of the Lyme conferences. However, how the heck do I know which Lyme doctor's research is correct. I don't. It seems that all of the Lyme doctors/researchers may have something a little bit different to say about the subject. The only thing is that as far as I know - this doctor is the only one to do an actual study on the lyme labs.

We treated for Lyme with iv antibiotics for 5 weeks. Because he was so severe with his sudden onset neurological problems, his lyme doctor started treatment before we got our results back. He was tested by many,many different labs because I wanted to be very sure. All of his tests came back negative. At that point, I wasn't pursuing pandas because his titers were low and I thought that that meant no pandas (as per what the psychiatrists and neurologist told me at the time). We are currently patients of Dr. L.