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Did steroids help your son? Do you have any idea what started this? The severity of my children's symptoms got pex going for us. Your son sounds very severe. What testing have docs done?

Autoimmunity can also cause psychiatric symptoms. We had the opposite experience as nickelmama. Extensive integrative LLMD care did not bring the healing that more "traditional" care did. My child did have positive lyme and babesia tests.

Have you tried from an autoimmune approach-namely, steroids? It worked for my kids! Perhaps, if she did indeed have lyme, strep and the assorted viruses, her PANS is now into an autoimmune stage rather than an infectious one Just a thought.

4nikki~ my daughter has been on cellcept and monthly ivig, iv soludmedrol since 8/2013. she received rituximab in april 2014 & dec 2014. I am not sure which of that cocktailhas worked- probably all of it !- but she has gotten to places we never dreamed. She still flares, but they are much shorter and less severe than before. She takes advil for pain (usually just headaches here and there) and I cannot tell if it helps at all, because generally, her symptoms are so mild now that any benefit of advil would not really be noticeable anyway. when she was very sick, i do think it may have helped a little, but hard to day. My daughter (a different one) has remission from her verbal and motor tics after the month of steroids end- this has happened a few times and the tics have stayed away for months after. I am going to send you a PM

I am no expert on this panel, but I will comment that I believe my daughters results were also abnormally high dopamine 1 , lysoganglioside and CaMK was moderately high. She has done extraordinarily well with immunosuppressive treatments and IVIG. also, in response to the first poster, I think you were asking if this test shows positive only if you have a strep infection, correct? No, this test shows anti neuronal antibodies not strep specifically..

I am no expert on this panel, but I will comment that I believe my daughters results were also abnormally high dopamine 1 , lysoganglioside and CaMK was moderately high. She has done extraordinarily well with immunosuppressive treatments and IVIG. also, in response to the first poster, I think you were asking if this test shows positive only if you have a strep infection, correct? No, this test shows anti neuronal antibodies not strep specifically..

my daughter has been receiving monthly infusions since August 2013. 2 or 3 times we have tried to space infusions to every 6 weeks, and each time she started to decline at about the four to five week mark. she received her second course of rituximab in December, and we are hoping, by this summer that she will be able to stop her IViG. She also gets one gram solumedrol with her IVIG. We have also tried at different times to lower that dosage and there was also a decline. She's doing fairly well now, and her next infusion in March will only be with 500 milligrams of solumedrol. Also, she gets 1g/kg ivig once a month

3peanuts, check upper corner for red flag or number and click. I sent you a private messagem. On mobile device click blue square in upper right corner with four white squares and it will shows messages. I hope that helps you find it!

Steroids would absolutely relieve autoimmune based symptoms. I am not sure if the above response was a typo, but I wanted to clarify.

My daughters both had it in 2011. One of them had it twice. All were at georgetown. The process at that time was that they had a central line place (once in the neck the other two times in the groin). The line stayed in the whole time, obviously.after they were sure the line was patent and the girls were ok, they begin the first exchange. During the actual plasmapheresis, the child had to stay in bed for several hours, usually about 4-5 hours . Once they were un hooked from the machine they were able to get up and move around. My girls were maybe 11 and 13 at the time, so they were glad that they were able to get out of bed. They were each there for about 4 days each time. We really did not do very many supplements at that time, but they were on their normal antibiotics and psych meds. One of my daughter improved dramatically 1 week post pex & the second daughter was greatly improved by 1 month. She relapsed, and had a second pex about 4 months later. She also improved at the one month mark but it also did not last. Since then she has had a much better response from oral immunesupresants, monthly IVIG and IV steroids and rituximab. She has since been diagnosed with another autoimmune disorder and autoimmune encephalitis. logisticallly, Georgetown worked out pretty well. Parking was very expensive like $20 or so a day I think, and the food was really far away from the hematology unit at that time. if you can think of anything more specific you would like to ask, I would be more than happy to share with you. Feel free to private message me if you like. the potential side effects of course have to do with the line, mostly- bleeding, infection, clot. Sometimes a child can have problems with calcium and magnesium during the pheresis, but they are transient and correctable. My children were not functional the time and did not attend school, so they were just home all the time anyway after. I am very hopeful for your child that this helps. I can share more privately about the testing my daughter had that found the underlying disorder and her current tx regimen.

Anyone who is going to the race to support the AE Alliance and is interested in meeting, please PM me. Thanks

my daughter gets IVIG /solumedrol monthly. She goes to school the next day , usually.

What is Albright, 4nikki?

Has someone ordered IVIG? Would she even cooperate with an IV? If there are no concrete markers for PANDAS (just looking at your tagline) and everything seems to not be helping, maybe IVIG is not the best route. I am only going off what you post on here and on your tagline~ but personally, with any evidence that it might help, i would not give my child IVIG. Is she on the autism spectrum at all?

My daughter had rituximab april 2014 & dec 2014. our doctors told us it may take a few weeks to have an effect. It was hard for us to tell, she's also getting monthly IVIG and high-dose solumedrol She had her second round in December, she had begun to flare, and her B cells were beginning to repopulate. My daughter had two doses two weeks apart for each round. She will be 17 in less than a month . She had pex twice in 2011. it really helped her at the time, but did not last very long. She is also the older sibling of a child with pandas. That daughter is now 15, she had pex and IVIg in 2011. After a few years of antibiotics and intensive therapy at usf, that child is fine. We are also in northern va (I assume that is what nvamom stands for)

Risperdone was also helpful when our daughter was raging. We had every form in the house and would put the liquid in her drinks or food. Have you had any labs done to look for cause-autoimmunity, infection, other?

Thanks. I will clean in box now!

Please consider duke's neuroimmunology clinic. They do not treat pandas (as that name specifically) but several "pandas"pts (including my own child) have been found to have underlying disease causing pans. My children also had ivig, pex, steroids. I can share more specifics about duke, privately, if you like or go to aealliance.org

Brian fallon does neuropsych lyme stuff. Was in NYC- @ Columbia university

Not sure where the bay area is, but I assume you know about Stanford's pans care?

My daughter (who had been room-bound due to OCD) was able to eat a short lunch with us. She showered occasionally. She spoke to us some, with out screaming. It was continual slow improvement for about two more months. Pex was repeated three months later. Again, a month later, we saw minor but definite improvements. I will be honest. I have a very different approach to this illness than other people on this forum. In fact I think we, or rather our children, suffer from different illnesses with the same symptoms. I myself, would not be terribly devastated if she was sick after receiving plasmapheresis. I had no doubts my child's illness is caused by autoimmunity. Perhaps it was triggered by her Lyme disease, or another infectious trigger that I cannot pinpoint. But the fact is, treatments for autoimmune disorders have healed my child. At this point I really don't care what triggered it. And I believe there's a lot more science behind autoimmunity treatments then searching for "hidden" infections. Obviously, your daughters infection is not hidden, if she is symptomatic. But I would not waste too much stress or upset over the fact that she is still sick. Do you have something that pointed to autoimmunoty as a cause? Any labs or positive response to ivig or steroids? Is it possible her problem (current physical symptoms) caused by something for typical- anemia, for example? Or even more likely, in my opinion, is the prozac. that medicine is a real mess for some people. do you have a good psychiatrist that would be willing to consider that the Prozac might actually be making her worse?

my daughters' had plasmapheresis a total of three times between the two of them. The one who had been sick the longest, and was very severely affected took a solid month to see improvement. Prozac also made her much much worse. She takes clomipramine. Pex was only a temporary fix, but I will take any remission they could get from this horrible illness. Besides the temporary help, this also give us the evidence that we need, and other doctors have needed, to finally find and treat the underlying condition. It was evidence that this truly was autoimmune in nature.

I now you are probably not up to it, but sometimes to get followup from dr l you need to call incessantly.

Pleae go to er for suicidal concerns. Please! Go to aealliance org. To find a doctor who maybe able to help with autoimmune neuropsych problems. Does advil help? Duke has been a godsend for my child but not for adults. Are you an adult?