qannie47

It took 6 weeks of antibiotics to clear my ds of the strep infection that caused his first Pandas attack. I would suggest that you have his titers checked again, and if still elevated, put back on antibiotic until titers normal. If this is Pandas, he wont get remission of symptoms until infection out of his system. The fact that he regressed after off of antibiotics to me is indicative of something. Have you put him back on the antibiotics? Sounds like Pandas alright.

Once again, I found myself coming back to this forum. And it has occurred to me what all of you in this forum have come to mean to me. I have never met any of you. Yet, I know all of you. This strange connection/kinship, lending support...encouragement. I am struck with the realization of how thankful I am that on many days, most days, I have all of you to come to. I read your stories, contemplate your questions, find answers, and realize that I am not alone. That is such a blessing. All of you are so remarkable. Your strength, determination, faith. Your fortitude. The lengths to which all of you are willing to go to for your children, to not give up, to keep seeking when a dead end is encountered, is so inspiring. Truly, emotional nutrition when my day has not ended well. Then there are those of you whom are suffering personally. You have not given up. I am so thankful to you as well for the courage you have to share your journey. I confess that sometimes, I look around me and see ordinary people dealing with ordinary circumstances, and while I am not judgmental, or resentful, I find myself sighing....and think to myself....you have no idea. It with all of you, that I have found this odd cyberspace family connection that I am so grateful for. So I thought it was so important to acknowledge this. I have a feeling that my own feelings are not foreign to any of you. I sense that. Last, but not least, I end this rather emotional expression, by saying once again, Thank you to all of you. You all are quite extraordinary. Q

Prayers for your family. Remember that God is with all of you. He is with you on this journey. He has and will provide for you guidance, strength, faith, and answered prayers. For myself, in my darkest hours, God in the end has never let me down....

My kids like books about motorcycles, cars, skateboarding, boy stuff....They are both a little attention short, so this is how we fell into these kind of books.....They don't have to follow a huge storyline, god forbid, they might melt...so no gum or vomit.

This is all very interesting....I hope others chime in. Im going to check in with ds doc and see exactly when his scarlet fever was....

Swedo recommends 6 weeks of abx to rid of symptoms...in first episode with my ds it did indeed take 5 wks to clear infection/symptoms

Anybody? My son was vaccinated...

I think the jury is back...Ha! You guys all have great spirit!!!

when did first symptoms appear? That your could remember? Do you remember an onset before july?

ditto....good resources here...

I used ice first....then ibuprophren if ice did not work

http://pandasnetwork.org/treatment.html I was asked to share this. I think it is one of the best articles that I have come across. For me personally, it answered almost all my questions.

It is scary how the people on this forum all seem to be of the same mindset at the same time. I was just wondering about the same thing. I have not vaccinated for flu in the past few years, and this year, I was trying to decide and came up with the same concerns. I have decided to forget it. For me it is just not worth the risk, and it seems they always announce that they had the wrong strain anyway.

Strep in the joints is one of the places strep is thought to hide. Allowing time for "mimicry". I don't know of a specific blood test, but perhaps a strep test? Blood test for anitibodies? Although, my understanding is that when the strep is "hiding" in the joints, it is at that time that the immune system has not caught on to it yet, hence the word "hiding". So, a blood test would not show antibodies. The fact that all my ds's leg issues: rls/joint pain went away 100% to never return even with future episodes, to me is highly suggestive that their theory is correct. Perhaps not the origin for all joint/rls cases, but in our case, it holds up. My ds was on abx for 6 weeks with initial episode. We were not even addressing the joint/rls at that point, but it was a positive and interesting by-product of the abx treatment...

My ds7 had rls as well. He had it a long time along with joint pain behind his knee. The interesting thing for us was that when he had his first major Pandas episode, (positive strep), he was on abx for 6 weeks. I never connected his leg issues with strep, but after abx for 6 weeks, his rls and joint pain went away 100%. Which leads me to believe that the strp was hiding out in his joints. I think the leg shaking was his way of dealing with the discomfort. If you read on Pandas, you will find that they believe that in Pandas kids, the strep hides in joints. The fact that his went away, and never ever returned, (even in new episodes), tells me that this was the cause. Could there still be hidden infection?

hmmmm. sounds like my other ds. His twin has pandas. Does he have a history of strep? Did his symptoms start abruptly? Although, they are now considering slower onsets. I would suggest going back in his medical records and see if you can find a strep history.... That being said, I will share my other ds's story. This wonderful child of mine was always intense, low frustration tolerance, stubborn, prone to anger, sensory issue...starting kindergarten was a nightmare. He fell apart as well. My approach: Talk to teacher/school social worker immediately to let them know that you are not in denial with your son. My experience has been that when anybody who knows that you are trying your best with your child is more inclined to work with you... My biggest suggestion: "Transforming the difficult child", by Howard Glaser. This has change life for us when it comes to my son and his odd issues. You can rent the video from library. My mistake, I worked on his behavior, thinking that I would get to the academics later...My newly learned insight, They go hand in hand. If your child is struggling at all with academics, address it now. If he has an intense temperament, school will only just upset the bee's nest. I am removing foods from his diet that contain bht and like preservatives. The are other look alike ones as well. A sensory mom, suggested this to me and said that her son's odd became highly manageable after this was removed from his diet. Check out the Feingold diet. The jury is still out on how the elimination will affect my ds. good luck, I know exactly what you are going through..

Met with chiro. She was very nice...I was impressed that she researched Pandas before our appointment. She checked out ds, and said that she will get back to me with a game plan in two days. She said that it should also help with his bedwetting problem as well....we shall see.. thanks for the replies.

My ds on week 12 after ivig has relapsed into a pretty bad Pandas episode. I am very concerned. He was at 150% 10 out of the last 12 weeks...My friend urged me to talk to her chiro/holistic doc about immune system treatment options. dr janet heard me out and thinks that she can help me out using accutpuncture..she says that with kids she does not use needles. She claims a 95% success rate in the reduction on hyperactive symptoms and also makes great claims about it helping the immune system..any experience out there? too tired to fix typos

JoyBop, sent you a pm

JoyBop, would you mind expanding on what Swedo said? Are you quoting her saying that if it is caught during the first episode in the first 3-6 weeks it can be irradiated? That seems like a very small window, and how many parents/doctors would be savy enough to even catch it? Has she sited cases that have been caught so quickly? I would be very interested in reading the context in which she makes this declaration. Could you reference it for me? Thanks, very disturbing if this is what her research is actually showing.

Read about the "wax/waning" cycle. Very typical...in the healing stage, you will see much of this...It is often difficult to determine during this phase if they have truly turned a corner or are still in the grips of an active infection. Time will tell. From what I read, your child has not even finished his first round of abx, so I would say that the infection is still there. My child needed three rounds of abx before his first initial round of Pandas diminished. Make sure you get him tested for strep after he finishes abx. Let a couple days pass or else you can get a false negative. This should offer some clarity as to what to do next.

Brain inflammation, kids with Pandas, how does it happen: It is believed, as with Rheumatic fever, Strep, being a highly sophisticated bacteria goes thru a process called "mimicry". In short, Strep being undiagnosed and living in the body for so long is able to mutate and surround itself with a protein that is much like the specific protein that surrounds the cells in the part of the brain called the Basil Ganglia. So the immune system, which is able to produce antibodies that are specific to different viruses and bacterial infections, also attacks that part of the brain. The antibodies think that the cells in the basal ganglia are strep! Simply put, that is what happens. I don't know what your doctor is talking about. Clearly she is not on board with Pandas, and it's etiology....Pandas in similar to Rheumatic fever in this way. There is no controversy over what occurs with Rheumatic fever, so.....if she can't understand this, you need to consult with somebody who can.

Hi, sorry for how difficult things are for you and yours right now...Try and remember that it really is a 12 wk period in which you should see the results of IVIG....Hang in there....As far as your own stress level...I know how hard that is. You just reach a breaking point. I try to remind myself that snapping at my ds only serves to raise my own blood pressure and solves nothing. There is nothing wrong with being firm though, sticking to what is necessary like taking meds....When my ds is flaring, and I want to through him through the window, I have found that being neutral/firm with enforcing a rule works well for both of us. Like I said, when I get so upset, it only serves to make my ds worse cause he works off of my energy. That has been my experience. I try to remember, (and it is not easy), that he is sick, his brain is inflamed and if he could do better he would...yet I still am firm/I don't negotiate with certain things, without all the yelling, snapping....My own central nervous system thanks me at the end of the day

Just read your article...amazing...interestingly enough, 6 weeks after IVIG, I decided to add probiotics to his regime....I just went back and checked my journal that I keep for him. 2 days after starting the probiotics. my ds had a five day flare that freaked me out....then normal....since then....I am considering this a true "die off", since he went back to baseline and never looked back now on week 11 still amazingly good.. Should I have his levels checked though? I sure don't want to create another problem with toxicity...

Hello, I have my Pandas child on a magnesium supplement, (recommended dosage). I recently discovered that it also aides constipation. Magnesium is also thought to have a calming effect on the brain....might help with anxiety?