qannie47

Love this....soul speakery, very well said.

Wow. What an inspiring, emotional thread! It is so wonderful to hear the stories about recovery. Once again, I am awestruck by the likeness of all of our stories. I know that I should get used to it, I feel like a veteran, but Pandas still has the capacity to make me want to pinch myself and see if I will awaken! The common thought about not wanting to report "recovery" I totally get. Pandas has made me superstiscious.....Ha Thank you all for sharing your stories.....all reading will sleep a little more peaceful tonight.

Hello. I would say to keep him on abx until you get a negative strep test for one. Also, if she is still symptomatic, (pandas symptoms), I would stay the course of abx until you see a remission on symptoms. My son, 2 years since Pandas onset with strep, reacts differently to abx. The window of time in which it takes the abx to bring about a remission is different with each episode. I have seen him go back to baseline behavior in 2 days, (mild episode), and other times it has taken 6 weeks, 3 rounds of abx. His average response time is 2 rounds of abx. I would keep her away from cousins until she has a negative strep test. Best regards

http://www.joanmathewslarson.com/HRC_2006/Depression_06/D_roller_coaster.htm

If the inflammation is on the high side, once dose of motrin may not do it. I would give it every 6 hours for 2 days before I would consider it not to be helpful. And even then I am not sure I would rule it out.

Tumeric. There is a thread here somewhere about what a wonderful anti-inflammatory it is. Here is my thoughts on "true adhd" & "pandas adhd": When I think of my pandas child, when in a flare, his is adhd thru the roof. When not in a flare, he ranges from the model perfectly calm, focused child to mildly high-strung, but able to be easily refocused. Then I think of my nephew, age 21 is was just diagnosed with Bi-polar about a year ago. When you compare their symptoms when each is having a problem, THEY ARE IDENTICAL. So. My nephew is not dealing with Pandas, and my son does not have Bi-polar. The etiology of their own specific disorders are different, yet the outcome is much the same. I am staring to think that the term ADHD should no longer be listed as a disorder, but more considered a symptom....I can think of so many ways in which ADHD expression bleeds into so many other disorders, and yet the dx is not ADHD. If in fact there is truly such a thing that stands alone..... p.s son and nephew are not blood related.

I do plan on finding out what those O bands can mean more definitively....for now, I think I may have stumbled on the issue. When I spoke to my ds and asked him questions like are you going every day? He said that he has been holding it in at school because he gets in trouble for taking to long in the bathroom. My ds had made poor choices in the past with goofing around when given a bathroom pass, so I can see the time restraint. However, when in a flare, I had forgotten that he becomes very obsessed on if he has wiped himself enough. At home, he will spend more time after a bowel movement, use a half roll of toiled paper, has flooded his share of toilets, and often wants me to check him to make sure he is completely clean. So I think, by holding it too long, some was dropping out....which explains the larger amounts when he did finally eliminate. I emailed his teacher and explained the issue and put in a request for more bathroom time. If the problem resolves itself, I will have my answer.

Calling all doctors. My ds has done really well and glad to report that immediate response with abx cut short flare and minimized it. However....yesterday and today he lost small amounts of bowel. What is disturbing is that I fully expected it to be loose. It was not. It was solid. When he eliminated the rest, it was a quite a bit. So I wonder if he is not receiving signals...of course I wonder about the whole O bands ms thing. Which I will eventually get a second opinion so I can stop obsessing. Meanwhile, can anybody guess what else could be causing this? He is in a mild flare, I would rate it a 1 out of 10. Tonight he is a bit more jumpy though.

Another important thing to note. Once this disorder sets in, it seems that anything that triggers an immune response will/can cause a flare. The common cold, allergies, exposure to other's illness's, stress, a bad fall, etc. Motrin, ibuprophren, is good for the inflammation. It is not a cure, but a bandaide while using abx and wating for the recovery stage. Other's recommend epsome salt baths because of the magnesium and that can help to calm. I used this recently, and with good results.

Yep, sounds like Pandas to me, and I don't say to to easily. I ditto what most have said. Find a specialist, and read. Come here for support. The people here are amazingly supportive and know their stuff. Got me through a lot. Don't take him off abx until he is completely done with all symptoms. Also, know that when he recovers, this will most likely not be the end of it. That is where you will need to read and educate yourself. Kudos to your doc. Best of luck

http://www.latitudes.org it worked...got a message about allowing clipboard first. Never got this message before. But I hit allow, and it worked. Yes, thank you webmaster!

I am confused why doctors when looking for an answer don't go the LP when all other tests come back negative. I get how invasive it is, and there are risks, but if nothing else is providing answers why wouldn't you look further? It is the csf that is the very fluid that surrounds the brain, so it makes sense to me that you would look there to find inflammation. In fact, my ds's tests all came back normal. Blood, eeg, mri. I know that the hospital was smug about it and did not want to do the LP for that reason, but the results did show inflammatory markers when they found the O bands, as most of you know. I realize that much of the blood work and other tests can be a indicator that suggest no inflammation or autoimmune...but look at what we found. My thoughts are, if you have not found the answer....you keep looking.

Check around on the internet and you will fine "free" advocates. My friend, whom has 3 kids with special needs swears by the value of having an advocate. They will be well versed on your legal rights and can/will even attend meetings with you. She has not needed a lawyer with a good advocate.

When I copy http and then try to paste nothing is happening. Just the blinking cursor as if I did nothing. The hyper-link does not seem to be working for me either. It is actually freezing on me and I am unable to close the hyper-link window. I have to close out the entire forum to exit.

I would not normally go off topic, but I have not been able to copy/paste links to this forum for a couple weeks now...I do not have this problem otherwise. Only this forum. Anybody else experiencing this? Suggestions?

Yes. It seems that summer time is my ds's finest hour. He has yet to have a flare during that time.

hmmmm....learned something new today! Nobody mentioned those exact words to me regarding my ds's recent tonsillectomy, but he has had a history of bad breath, which according to a google search, talked about causing bad breath. It will be interesting to see if we have distinguished his bad breath with surgery...although, getting rid of just plain old bacterial infested tonsils might do the trick as well!

By movements, I mean a constant movement in the legs. Karate kicks, when standing. It is more apparent when sitting or laying. Just cant seem to keep his legs still. He will stretch them out touch others with his feet, touch the table, anything that is in his path. If he is on the floor, he will roll backwards and lift his legs into the air. None of these are fast movements, just a constant, slow, fidgety type movement. When this is going on, I don't think he can stop for even 5 seconds. That is always a part of his flare.

I would assume yes, that means that they probably found an impressive number of bacterial/viral infections that grew from the culture.

never thought of that...Great idea..makes sense that it could help

Nice wishful thinking pr40.....I think my husband would have spiked my coffee every morning with abx during my early menopause..... Ha I think my sister in law had Pandas as a child. She is now 65. She is now schizophrenic. The family never believed in going to the doctor. So, I could see a Strep infection never being diagnosed or treated. The limited info that my mother in law will share describes a child who had tics and over the top fears. Dr. K in our initial interview, and not knowing anything about my family stated that "anybody that developed Pandas over 20 years ago it could be a tragedy. I believe that it can lead to schizophrenia, etc...". I immediately thought of my sister in law. I also think each case is unique as well. A spectrum. Some might just grow out of it with no intervention if they have few episodes. Others might not if they never have abx to treat infections.

Good news for ds. I started higher abx immediately, gave him an epsome salt bath and a dose of motrin for immediate relief after I saw a whole days worth of movemnts... He responded well to motrin and slept well all night with no night movements. He did wake up hyper-motoric, so I gave him another motrin dose. He calmed immediately. When the motrin wore off 6 hours later, I carefully waited for the movements...none came. I also had noted that the day before, when the flare started, I did not see any of the mood/cognitive regression that ALWAYS accompanies a flare right out of the box. I took this as a good sign. While he was a little over stimulated, and herky jerky, he was smiling, and happy. Usually, he looks like a classic case of ODD with over the top temper tanrtums and obsessive irrational thinks. NONE TO BE FOUND. This morning he woke up, 48 hours later...nothing. Calm, and no movements. He received a perfect report from school, and when I got home from work this evening, his dad reported great behavior and no movements. I am going to take this to mean that perhaps all of the work, IVIG, abx, T/A are perhaps doing their thing. Less intense episodes with faster turn around recovery is what Dr. K told me what to expect. I'll take it for now.

Is anybody out there on a high dose of omega 3? 20 grams? I would love to hear your input. Great post PR40

Well, I suppose I found my flare answer....I have the flu.

That's a good thought. I will look into the iron supplement. Doc just told me H Flu was cultured from his tonsils. Found that interesting.