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Quickly, sss, the reason we could afford it is because we switched to someone who deals with insurance. Everything is covered now. We drive for her care. We sacrificed a huge amount before then. Her ivig also would wear off. Monthly ivig is a huge part of her tx plan. the reason I strongly recommend going to Duke's clinic, is that if they find something to diagnose a child with, they will get it covered. we paid for IVIG out of pocket, we paid for many many very expensive is independent doctors, and they were helpful but none of them got the care that we are receiving at Duke and none of them were covered by insurance. that is why I encourage people with severly affected kids, to at least try to get a consuly there. You never know what they may find.

hopeny gave you good advice. I just posted a bit on the Hashimoto's Encephalitis thread about this Lyme issue, if you want to read it. I would also like to point out ( and dodge tomatoes, verbal daggers and whatever else may be tossed my way) that many people who are posting about their "positive" diagnosis for Lyme have many avenues that they have used for testing. Some are medically tested (blood, body fluids, etc), but many are tested by "muscle testing", ART and many other things- that have very little scientific background.

I understand your fears about Lyme history and steroids. We had similar concerns. In my child's case- she refused all tx (she was completely nonfunctional) and that abruptly ended our 18 month foray in to Lyme care. Honestly, looking back, I am grateful it ended that way- there was so much questioning and pressure (self-inflicted and by well-meaning, but ill-informed people on the internet) I thought I might kill my daughter by giving her steroids. Once she refused her PICC care and oral meds, we were done with it. There was no decision to be made on my part- we were just done. Well, you know what? when we finally got steroids in her (high dose- for a month, Dr L) with in 10 days there were dramatic improvements. Dr L brought my child back and kept her there- with a series of interventions, but we needed more consistent, hospital-based care (though it is outpatient) and accurate diagnosis. Please, I beg you, if you have treated lyme in a reasonable fashion- move on. You could possibly be missing a huge factor in healing for your child. Secondly- I saw the aealliance.org Grand Round video and contacted the doctors in it- that was just over one year ago & my child has since been diagnosed with another autoimmune condition. She is nearly symptom free. I am not exaggerating. She has mild OCD and anxiety, small tics. However, she just finished 10th grade, has a job, exercises daily, smiles and even is beginning to help around the house. She was living in a PANS since Aug 26, 2008. I have another daughter, who had PANDAS- by definition.It became just as severe as our child was- for about 6 weeks (had pex, ivig, oral steroids a few times & 3 weeks at USF) she is now 100%. I do not doubt that PANDAS is a subset of AE. We did not test our second daughter for lyme. It was not worth the heartache, headache and confusion that path offered. I am so happy for those who have found healing this way. But PLEASE consider steroids- or get your child to the docs in the AEAlliance .org Grand Round Video--Duke's Pediatric Neuroimmunology Clinic. 4nikki- I would agree that two days is too early to make an assessment, but glad there may be some improvement. Secondly, if your child has HE (or another form or AE) your life (financially, getting her treated, taken seriously, etc) will improve greatly if you can get an accurate diagnosis and treatment at a first-rate facility. Please also consider the Neuroimmunology clinic at Duke. I have friends who travel from PA, FL and even further for their excellent care. Again, if you would like to PM me, I can explain more.

4nikki, if your child does indeed appear to have HE (clinically and with labs) I would strongly encourage you to consider going to aealliance.org and researching. I know I bring up AE all the time to people on this forum & I am sure it gets annoying-- but my daughter, who so, so severely affected by this disease for over 5 years-- is now nearly symptom free. It is a miracle. PANS/PANDAS was the right general direction and those tx helped, but the further help she has gotten this year has brought her out of that . I am very afraid that some people posting here are totally missing the boat on their children's illness and getting distracted with other possible causes. I can share more privately, if you are interested, about what tx, where and who.

Ditto on all of bradsmom comment. My daughter , after continual monthly ivig, cellcept, solumedrol and rituximab has very few symptoms remaining. The psychotic-sounding fits of laughter are gone and have been for months! Def pans (or AE) & not an IVIG symptom.

we tried lamictal (but only briefly) no real change noted. Can I ask, why did you take her to ER? Is she alright?

I would recommend that you check out this website: aealliance.org It is a great resource about autoimmune encephalitis- which can present with many of the symptoms you mentioned, and considering the family autoimmune history you point out, it would be worth your time to consider this as a potential cause.. My child (now 16) has been diagnosed and treated for AE and she is doing very well. The treatment is similar to treatment for PANS (steroids, IVIG, pex) but includes other treatments and , of course, there may be an identifiable cause to your suffering. If you watch the Grand Round video on the AEAlliance website (under Clinical Care tab) there may be some ideas of labs you could get some helpful doctor to consider. People hear the word "encephalitis" and presume it means someone comatose, on a ventilator or with seizures. That is not true. There are many people out there suffering with psychiatric and/or neurologic symptoms and the cause is a very treatable autoimmune disorder. I will be happy to share more if you like. Feel free to PM me.

We have replaced things like this as our daughter improved. I would not underestimate the severe psychological trauma this disorder creates for our kids. My daughter's bed, room, clothing all represented horrible dark times. I would encourage you to consider replacing it if he has similar association. Maybe even paint the room! Give him whatever fresh start may help. We replaced her wardrobe, too. Certain clothes were a bad memory.

ditto on what dcmom said. We have 4 siblings affected (there are several other, non-affected children). 2 were treated early with steroids and abx a few times . They are still young (6 &9) and at the moment, one only has tics that are recurring. The 6 yo even had scarlet fever & seems OK! The older two required pex, ivig and a few years of tx and one is 100% and the other is a work-in-progress, but pretty darn close! (they are 14 & 16). The factor to consider, I think especially in sibling cases, is a known autoimmune condition. trust me- your life and your child's treatment will be dramatically easier if you can find something besides PANDAS to diagnose. My oldest daughter was diagnosed with another condition, that was likely a factor in the sibling's cases. I could on back on the forum and find my posts about my 3rd and 4th affected children- they were very similar to your post, flmom. I went back and forth ("maybe it is just OCD", etc. Well, who knows-- but after Dr L worked some prednisolone magic, tonsillectomy (for one) & abx - a year later that OCD & panic my little one had is gone. Just gone! I think that sudden onset is a bit tricky. My most severe child, honestly, one of the most severe cases, probably, now is able to tell us that she has OCD thoughts and behaviors beginning 2-3 months before her "overnight" onset. It looked overnight to us- as it exploded (eye dilation, urinary incontience, "exorcist" OCD) on Aug 26, 2008. Well, all that summer, she had started to suffer, but at 10 , kept it to her self. She was the one diagnosed with AE and antiphospholipid syndrome. She was the first one sick and the last one to recover. get it checked out, flmom. One thing to add: at the neuroimmunology clinic we go to now, for AE, not PANDAS/PANS-- they have a high incidence of siblings and they recognize that, openly.

we paid out of pocket for IVIG in office- about $12-13K for 170 lbs.. that was in 2011. all that homecare was covered by insurance. Can you believe it??? covered upfront, too. too bad my child was not cooperative at that time. many home infusions were aborted after a hour or so. what a time that was. I would hate to revisit those days. Now, when she gets infusions, it is at a hospital infusion center and is no problem at all. there is hope for everyone out there!

So, is this saying that abx they are giving you works against the klebsiella but will not treat the strep? is it Group A Strep? Yes- could certainly be evidence of PANDAS, I think- or more evidence (like you need any more!) of infection-mediated issues at least contributing to your current state. was this culture after you had been off abx for a while?

we also had Coram for homecare (IVIG and solumedrol). it went well and had good coverage. Dr L was the ordering physician. We used Coram out of Chantilly.

We are also in Northern VA-- what about Dr L? That would be my first thought. both of my daughters had IVIG and many other tx through her.

CRD1995- I am so glad you had it done! and 9 days are not many- lots of time for improvement. I just wanted to offer to you- that yes, everyone is telling you to get abx (like you can just produce a doc to prescribe them for you!) if you can great, but if not- please do not stress yourself out over it- that is not helpful to your recovery (either from the surgery or from PANS) The important thing is that they are out and you have a great therapist. Do you know if the ENT cultured them? that would be interesting-- but again- just glad they are out! Best wishes and do the best you can- that is all anyone can do any way.

I know that some cases on here will see no parallel- but some will. I sure did. Please have your child thoroughly checked by a physician who understands and believes in AE- this may or may not be your PANDAS/PANS MD. This tx (rituximab) (also, ivig/pex/steroids) helped my daughter immensely within a very short period of time. This teen was helped in days. another article: http://www.washingtonpost.com/national/health-science/the-doctor-and-the-teenager/2014/04/28/e92eadaa-98b2-11e3-b931-0204122c514b_story.html

There is a reason they call you smarty;) Enjoy!

Excellent. So glad!

Was it Group A strep? (Strep-throat-causing bug) Or a different strain?

Does your son have psych symptoms or just tics? I have a 9 year old with tics only now (no psych symptoms for a long time!) & am considering this now.

If your child is severely affected, you may want to consider the neuroimmunology clinic at Duke. Dr Swedo spoke there, at an Autoimmune Encephalitis conference a few weeks ago. Check out Aealliance. Org and see if the descriptions fit. We travel to durham (4 hours) a few times a month. Excellent care!

I would absolutely continue. If those symptoms have improved- I would not stop it! hyperactivity/ impulsivity is totally to be expected on prednisone- even the moderate dose he is on. Steroids were a huge game-changer for my kids, several times, and pointed us on the path to recovery. So glad you are seeing response.

Have you tried clomipramine? In very small doses (25mg) it has been very helpful for my young adult sized daughters with PANS.

Duke university hospital Durham NC

Ellen , so glad you responded here! I was thinking of trying to connect you when I read bradsmom's post. I will send my contact info to you also, bradsmom.

My daughter had it last month. I responded to your post on the other thread (stanford thread, I think) My daughter is doing excellent but was no where near square one when she had it. If you want to communicate, feel free to pm me. My daughter is 16. She was a patient of dr l. She is now treated by duke. We have been to georgetown for pex, ivig several times (2 kids treated) & I can share with you anything you want to know. I believe rituximab has made a big difference already. My daughter was not at square one and has an antibody that has been proven to be responsive to rituximab, so I think her response may be abnormally quick. I am amazed and thrilled that you are getting this done. Dr L is really great to get it done. She wanted so much for my daughter and just could not get it done at that time (2010-early 2013). Dr shad is great, too. Attitudes much be changing there.