PhillyPA

Thought these were interesting. Just published. Hope I copied and pasted links correctly... http://mobile.journals.lww.com/anesthesiology/_layouts/oaks.journals.mobile/articleviewer.aspx?year=2012&issue=07000&article=00011 http://mobile.journals.lww.com/anesthesiology/_layouts/oaks.journals.mobile/articleviewer.aspx?year=2012&issue=07000&article=00006

As a parent, remember that you are in charge. I think it is insane that pediatric dentist, with minimal experience in anesthesiology, put kids under for cavities and other things. Most pediatric dentists have privileges at hospitals. You can demand that your child's cavities are filled in the hospital or surgery center and that you would like an anesthesiologist (M.D) to administer the anesthesia. But again, remind them no nitrous oxide. My son has a supernummary, which is an anomoly of having an extra tooth. He has two adult teeth growing on top of each other and has to have it surgically removed. You can bet that it will be done in a hospital, with iv antibiotics and an anesthesiologist. Anesthesia is a big deal. Lots of things can go wrong. I err on the side of caution.

Among other things, in certain situations nitrous oxide can make oxygen delivery hard. Nobody should be using it. There are many better new drugs. Usually only "old timers" use nitrous oxide. Always request no nitrous oxide.

Get the spinal tap for NMDA. They can check for other types of encephalitis as well. This is a very important step. Whenever there are acute personality changes, in my opinion, a lumbar puncture should be done, as soon as possible. My son also had auditory and visual hallucinations.

If this were me, I would not do the ivig. I would wait. If he seems healed, no reason to mess with success. Err on the side of caution. You can always get the ivig later if necessary. I always like to see things as signs. If you are getting this incredible, miracle-like sign that your child feels all better - hold off on ivig! Very happy for you. Enjoy the feeling of joy. Savor it and remember it.

I don't know what this is. However, my husband has a dark circle patch in the center of his back and it is auto-immune related. It is benign. Can't remember the name of it. You can reassure her that no matter what it is you can make it go away. A laser treatment can blast that brown spot clear away! They can do spot laser treatments. It is painless and takes maybe three minutes. I am editing to tell you my husband's skin patch is called Morphea...

Philamom - He gets better and better every month. As long as we move upward that is a good thing. We stopped backsliding when we got on a regular ivig schedule (every four weeks) plus iv steroids every four weeks.

IV steroids are best. Solumedral.

Coco - I like the way you think! Sweet Cheeks - I smoked in college too. Not at all concerned about the toxins I was putting in my body - but when I knew I would be smoking and we went out I purchased two packs. Whenever someone asked for a drag I would just give it to them. Couldn't bear the thought of having someone else's lips on my smoke...that wouldn't be healthy.

My son had sudden onset at age five. He is now 9 years old. His long term memory is intact. He remembers everything up until age 5. As a matter of fact, the strangest thing happened during that first episode. He would regurgitate memories from way way back. He said the name of the town where he was born and said he wanted to go back. We only lived in this town for the first 13 months of his life, never talk about it, and had not been back. He remembered the name of the town. He talked about wanting to breastfeed!? He just kept saying these old memories and it was amazing. His voiced them all during hallucinations and psychotic episodes and then lost it all, including his language. He currently remembers only things up until age 5 when he got sick. He will go into the basement and find an old lamp, bring it up to his room and put it exactly where it was when he was a toddler. He wants to watch tv shows he watched up until age 5. If we are in a store he might find an old DVD of a show he watched prior to his illness. I recently showed him a video of himself prior to his illness. He looked at it and said, "that's my brother." I said, "no, no - it's you." He walked away looking very sad and said, "no". He now looks completely autistic. Normal development up until age 5.

I'm going to back DCMom up on this one. I let them eat things that drop on the floor for the very same reason. I don't want them to get nuts about germs. We don't share licks of ice cream but I do let them eat food that drops on the floor. Not wet food but dry food. A cracker or cookie or something like that. I do this so they don't go overboard with germs. I actually read an article that it doesn't matter if wet or dry food touches the floor, the germs they pick up are the same. However, psychologically, for me, I can't do it. Only dry food. I freely admit I am personally OCD about food and sterility. But I believe that if you are going to have some sort of OCD, that is the area we should have it!! I can't even imagine having a waitress pack up my uneaten food at a restaurant. I was a waitress during college. I have seen wait staff pick/eat people's food being wrapped up. I always ask wait staff to bring me a container and I will wrap it up myself!

I literally felt ill reading this post. I would go nuts. I grew up in a home where it was sterile in terms of glasses, spoons, not sharing food. It was ingrained in me to keep food sterile, never share spoons or glasses,etc. If a cooked chicken is sitting at the table for a long dinner it gets thrown in the trash. My stomach is queasy thinking about your situation especially with pandas in the picture. My husband is the same with with sterile food so we are a perfect match. There might be clutter on my floor but you eat at my house and your food is sterile. When I watch my MIL cook and stay in the room and watch her. I tell her not to put that spoon in her mouth and that I will not eat the food if she does. She respects that and laughs about it. She is also Italian...but I still watch her.

I don't believe in co-morbid. I guess I should never say never but that always seemed ridiculous to me. I mean, yes I believe that you can have something ADHD and pandas and Lyme. But I don't believe co-morbid conditions pop up over night without any warning unless it is something genetic (which in our case I know that it is not). Especially when all medical evidence says that there are no co-morbid medical conditions. I believe that something infectious happened to my son and that one infection did this all by itself. No "co" anything. Also, I know it is hard to read intentions in email so please know I am stating this matter of factly. No anger, or aggression or judgement. Just stating what I have pondered on the patio for many many months.

This is what happens when I blow off yoga in the morning. I am checking the forums which I haven't done in ages. I hear ya Mkur - who cares what you call it, just fix it. But the reason why we should WANT the pandas kids to fit neatly in the diagnostic box including a full remission is this - we want pandas accepted as a real disease with a real cure. When this happens, all of the kids who do not fit neatly in the box will be more likely to get help. If we try to fit everyone in the box and call it pandas the naysayers will have their say and it won't be pretty. So I say, put the pandas kids in a tight box and fix them. Then, fix us.

EAMOM if the information your present is correct than I am more certain than ever that my son does not have pandas. No cognitive tests needed to be done to see that my son collapsed at age five. It was sudden and apparent when he could no longer talk. Although he meets all five criteria of Swedo's pandas diagnosis, I highly doubt it is pandas. If most pandas children do not experience a cognitive collapse than I am correct in my assessment that my son does not have pandas. My impression after reading Saving Sammy was that he was so overwhelmed with OCD he was barely functioning as a human being. In my memory of the book, he won that big math competition as he was on the road to recovery. My son was perfectly healthy and normal up until age 5. He was not on the spectrum.

I don't even believe that my son has pandas. After being 100% sure that it was pandas, I have come to the conclusion that I know nothing. I believe it was LLM that said something like we think we are 100% sure about something and then it turns out we are not. That is where I have been for a while. I believe that if my son had pandas he would be better by now. I think my son falls into the category of "something else".

Dont' get me wrong. I think the girls have something. By all means treat with an antibiotic. Treat with steroids. Do what works. I just don't think its PANDAS. Could be a mutation of some strain of something. I have no idea. Just doesn't present as pandas. Keep moving forward and find out what works for the girls' healing.

As far as I know, there is zero cognitive decline in these girls. None. I would bet that the Cunningham test would be normal. Just my guess. But my theory is that out of control autoantibodies cause cognitive decline of some sort. Just like most autoimmune diseases with neuropsychiatric symptoms( ie. NMDA encephalitis).

Abbe-sometimes fish oils cause a bad reaction on pandas kids. If things get worse, it may be the fish oil. That being said, some kids do great on fish oils. I am mentioning it only as a precaution. My son flipped out when on fish oils. Horrible. Horrible. Horrible.

Hi Jill! My guess is the Augmentin or....it could be the probiotics. If you have recently upped the probiotics that can cause an upset stomach. Probiotics tear apart my stomach. I can't take them.

I agree with the systemic infections occurring after surgery but that is because the infection gets into the blood stream...thru a cut,open wound, the actual surgery itself. Not from a tube down your throat pushing bacteria into your stomach...

With all due respect, I do not believe that a tube can push bacteria down one's throat and cause a systematic infection. My thoughts on this doctors comment should come as no surprise since we question the things doctors tell us on this forum all of the time. That doctor's theory seems to be to be pure hog wash. Some doctors say weird things. I do think that a child should have iv antibiotics during surgery and antibiotics after surgery.

No doubt Peg continues to fight for her daughter but without a doctor willing to prescribe the tests, drugs, steroids or whatever- it would be a losing battle. In order to fight this disease we need the help of doctors, period. This is one battle we can't fight alone. So I say it again- your pediatrician is amazing!

I am in awe of your pediatrician. Wow. That is fantastic! Please keep us posted. Give me the profile of your pediatrician - old or young? Married? What does his wife do? I am just curious as to this saint and what he looks like and what influenced him. You are so very lucky Peg to have this man on your side. He is fighting for you. He hasn't given up.

If these girls had nmda encephalitis more than likely they would not be capable of giving an interview on the Today show. NMDA is much more serious than what these girls are exhibiting.