PhillyPA

My husband works in a hospital and says that mrsa is everywhere. He says he sees it everyday. He says it is so rampant that he would not be surprised that if his nose was swabbed for mrsa it would show up. He said because I am in such close contact with him he wouldn't be surprised if I were a carrier too. It is that prevelant.

I think that the safest thing to do is to collect blood before ivig or wait three months after ivig. To me it is common sense. I don't care if this is just a letter about one person. If it happened to one person it can happen to another. I think that any neurologist/research scientist will tell you that ivig can complicate ALL testing. Welcome aboard BluYorkie...

Michael Tampa and Aidens mom you both make excellent points. I am going to throw up my hands at this point. My prayers go out to the girls and their families. I know how hard this is for them. However, I feel a little sick about the fact that I am speculating and guessing and posting over something that I have very very little information about. I don't trust the media and I don't know the story. I am wary about guessing that this is pandas because I don't have the facts. I only hope that if it is pandas or whatever it may be that they are blessed with a speedy recovery.

I would think that if a vaccine were involved it would have been mentioned. Why be quiet about a recent vaccine? Surely one of the parents would have come forward and stated that their daughter recently had a vaccine. It seems that one of the parents would have put two and two together if their child recently had a vaccine and would have compared notes with the other parents.

P.Mom - I did not know that your older pandas son only had tics. I thought he presented with a personality change that looked like he was possessed. Perhaps I am confusing that symptom with your other pandas son. Don't misunderstand me - I would recommend that these girls run to the nearest pandas specialist. They will get help from these doctors, for sure. I suppose I learned something new today. I really, really thought OCD had to be present.

Can PANDAS be diagnosed with just tics? There is no doubt in my mind that these girls have an auto-immune/post infectious problem but is it PANDAS? And really, as the poster of this topic explained, we are only getting a tiny bit of the real story but I am not so sure about it being PANDAS. I don't want anyone getting upset with me. I only saw a few seconds of video, but I did not know that kids could only have tics and have pandas. I thought pandas was a whole lot more than that. I kind of thought OCD was mandatory. Then again, maybe that is really what pandas looks like. If that is what PANDAS really looks like then I am 100% convinced I am barking up the wrong tree in terms of my own son. If that video is pandas my son does not have it.

Do these girls have any OCD issues?

This has been a problem my whole life! Loud talkin' men. You guys Italian? We are an Italian/German mix and it must be the combo for loudness. I married into it too. I guess I couldn't get enough of it growing up so I wanted it to continue. You can hear my family talking a mile away. I am constantly telling people to quiet down, lower your voice, I am standing right next to you. I am not so sure this is a pandas thing but it is an annoying thing...

The intro was written by Sarah Long but after the paragraph it directs you to another page with the full article by Murphy, Storch, Lewin, Edge, and Goodman. It's called Clinical Factors Associated with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.

I would ask your daughter what she wants to do. If she wants to do honors, let her.

Zofran was given and prescribed often when my son was at Georgetown. It is a benign drug. Often given to people who have something as simple as the stomach flu. Have no worries giving this to your daughter. What is interesting is that when he started getting iv steroids with his ivig he no longer had any headaches or nausea. We no longer needed the zofran.

Pm'd you.

When I took my son to Columbia for a Lyme evaluation I was told that they had a child come in who was sudden onset severe autism. He was completely cured with only 6 weeks of iv antibiotics. He only had the severe autism symptoms for months before he was treated. I can't remember the exact age of the child but it was in the 6,7,8 range.

I don't know what you guys are talking about? I never said that I wasn't coming back and that this would be "my last post". Clearly, you didn't read my post correctly....Perhaps you should re-read it. Because I would never edit a post after there had been discussion on it. That would be dishonest and sneaky.

You did make things quite clear in your PM. I suppose you are right. I am a "horrid woman". Edited for punctuation....

Pandas16- I see that you have edited your post and softened it. Thank you.

It doesn't matter if I agree or not. What matters is your timing. It is an important social skill. If someone is going through a difficult time you don't say what you said in your post. If you don't get it, you don't get it. I can't explain social skills to someone who doesn't understand. If you feel your post was encouraging then you just don't get it. Perhaps it is your pandas flaring. If so, I wish you the best. I certainly don't want to argue with you. I know that you will just put me down which is your M.O. lately. I don't need it.

Pandas16 - I am at a loss. I can't begin to describe how much your post upset me. Melanie needs encouragement right now. Your posts have gotten progressively cruel. I always tell my sons that their goal with friends should be to bring them up not down. Your post does nothing to calm and encourage a stress out parent. It is down right mean. I don't understand why you would treat a friend that way. If you don't have anything nice to say, don't say anything at all. I highly doubt a neurologist would order PEX for autism. Please, try to be kind. Try not to make fun of people which I have seen you do in the past, to me. Please think before you post.

Yes, my son has been tested for Lyme via a spinal tap. He has also been tested for NMDA. I am very familiar with it. It seems like you have a great neurologist in Boston. I am shocked. You can PM me if you have any questions. I have talked about NMDA at great lengths on this forum.

Your daughter may have a form of auto-immune encephalitis. She could get a spinal tap to check for NMDA encephalitis. There are many different kinds of auto-immune encephalitis but you need a spinal tap to find them and an expert in the field of auto-immune encephalitis to find them. I know with NMDA loss of language,facial movements (like the vibrating palate), trouble breathing are all included. You can start with this facebook group to find out more information and who in Australia can help you. I know that there are Australians in this group. There are many research articles on the subject as well. However, your daughter does not seem to have any cognitive issues. Most people with encephalitis lose cognitive skills. I get the impression that your daughter still is functioning intellectually even though her speech is compromised. It is worth investigating. Regardless, you should have your neurologist get in contact with Josep Dalmau in Spain to find out what to test for. Ask questions on this facegroup page. They will tell you what to do. Many people (women) have tumors terratomas in the overies associated with this disease although some people have none. She should get an ultrasound of her overies to make sure that there is nothing there. https://www.facebook.com/#!/groups/ANTINMDARE/

pandas16 - I am not sure how much experience and research you have with autistic kids but your findings are much different than mine. Autistic kids recover all of the time. ALL OF THE TIME. That is why there is so much stuff on the internet saying "Do this or Do that" Lots of different stuff has healed/recovered autistic children. This is why parents push to heal their autistic child because they KNOW IT CAN BE DONE. The reason that the general public believes autism is a death sentence is because that is what the media and doctors tell us. If a child recovers, doctors will brush it off that it was probably not autism to begin with. As we all know from our own experience with doctors and pandas - most doctors are totally clueless. There are very severe cases of autism, like Dr.Temple Gradin (I know I butchered this last name), who end up recovering. Many people here theorize that perhaps autism is not a disease by itself. Here is the thesis statement - If we notice that some people with pandas get autistic symptoms then perhaps autistic kids may have auto-immune problems too. Not all kids with autism do recover. But- it is not all that rare to hear about autism recoveries. Not rare at all.

I think what those adults did was really really cruel on so many levels. Your story really bothers me. Just goes to show that kids with pandas are not the only ones with mental issues in the community. If it were me, I would write them an annoymous (no idea how to spell that word) letter.I would not sign my name for the reasons that you state. You don't want to make enemies and have more problems. It will probably do no good because people who do that s**t have no boundries or empathy for others. Their idea of funny is sick. I am so annoyed by your neighbors. If that happened to me, a healthy adult, it would take me days to recover from that trauma. I despise the feeling of being scared. I never watch scary movies. I hate that feeling. I wish your daughter a speedy recovery.

Absolutely, 100% yes. I have seen it with my own son.

Early treatment in any disease is key. Get cancer early and cure is probable. Get cancer in late stage it is much more difficult. It is not impossible to cure but much more difficult. Same thing with auto-immune disease. Same thing in life. Hand in a term paper early, life is stress free. Start it the night before, very stressful and bad results can come of it.

airial95-- Ask for iv antibiotics during the T&A. My son(other son - not one this post is about) had a horrible pandas episode after T&A. He needed a three week steroid taper which totally took care of it. He got his tonsils out in June 2011. After the taper he just keeps improving. He is improving on things I did not even know were pandas related. It has been 5 months and he is amazing. Absolutely amazing. 120%. Best thing I ever did. But- have that taper on hand...