Cleopatra

My dd was diagnosed with Hashimoto's Encephalitis at Duke. But, I'm not her 😄

My twins used Dr. Trifiletti's Abx protocol for their PANDAS T&A. 10 days of Clindamycin pre and post surgery plus 4 days Rifampin pre surgery. It's considered the gold standard. Plus it's imperative that you culture T&A!!

My daughter was diagnosed by Tanya Murphy at Rothman 3.5 years ago. She's a researcher, not a treated. And if she was FREE I wouldn't go back. I've known a few who were very happy with Dr. Toufexis, but, they are not out of box thinkers/treaters and are very slow to treat. I highly recommend Scott Smith, PA in Melbourne As a starting point. He's functional Med.

Sorry, but, home remedies won't work and strep is SERIOUS. It can go beyond PANDAS I to rheumatic fever and involve your child's heart. Give her antibiotics!!!

My dd had nasal staph/MRSA that was triggering DISABLING and violent tics 10,000 x/day. Bactrim resolved it.

This child has PANDAS/PANS and you need a specialist more aggressive than Dr. Williams, IMO. Go see Dr. Beth O'Hara in CT.

Yes. The strep titer test can be useful. But, keep in mind, not everyone makes antibody titers to strep and it won't show on the labs. I would order antibiotics online.

Have you tried HD IVIg or PRX? Both extremely helpful here.

MAYZOO , HD IVIg cured my daughters mutism. Have you tried it?

My dd does' t have Lyme and we live in S. FL so mold is, literally, everywhere and there's no escaping it, but, I don't believe that is her trigger. Actually, after a point, the immune system doesn't need an actual trigger. It goes on autopilot and T and B cells just keep getting produced. We are trying to reduce those. My dd has been getting HD IVIg monthly for 3 years and does great with it. My doctor's all said the same as yours until we tested everything multiple times. It;s not always about a current infection or even a past exposure. Sometimes autoimmunity just happens...

My daughter has had a PANDAS dx for 3.5 years since age 7.5. Had all treatments everywhere these past 3.5 years. After asking for PEX from every MD we have seen I finally found one who is ordering it. Dd got her 1st PEX txtmnt over Thanksgiving. I say tremendous improvements in her personality and anxiety, but, OCD (while diminished a bit) and tics remain so she is getting txtmnt #2 on Saturday. It's been 3 months. Her status is same. Looking for additional progress. Anyone here seen it after 2nd Plasmapheresis?

If you know you have an active infection for sure, that shows on culture, or, in bloodwork I would treat that first if it can be done quickly. If it's MycoP, I wouldn't wait to do IVIg since that can take many months/years?. Yes it helps most ppl most of the time. Almost nobody only needs one. Dr K is incorrect, IMO. So is NIH. I know they are just trying to get PANDAS and even one IVIg treatment recognized and accepted. I would continue if it's helped. Also, if you are getting breakthrough strep you should change your abx until you find one that works. My dd is on IVIg #20. It's given every 3-4 weeks to immune deficient patients. Our kids are hyper immune and need it as well.

Just to clarify, Dr. K. is wrong. There have been many many cases of other things tripping PANDAS in a major way. My dd is one of them. She had HD IVIg a number of times. Was doing great 95%+. Developed a MASSIVE complex motor tic that was debilitating for 2.5 months. Finally swabbed her nose and found MRSA. Culture found it was resistant to everything (had tried most abx, antivirals, IV steroids, oral steroids, IV abx, IVIg, Cellcept ongoing, etc.) except for BACTRIM. After 7 days dd has stopped ticking completely and can go back to school. She was housebound again from this trigger and no, it was not strep.

Surfmom~ My dd started Cellcept a couple of months ago. She is 80 lbs. and takes 1,500 mg/day as well as IVIg 2g/kg every 4 weeks and 40 grams of Solumedrol. I have kept her on abx for over a year , but, recently had breakthrough strep along with MRSA in her sinuses that took her out for the past 2.5 months ending in a debilitating tic of epic proportions. At what point did you start weaning your dd off the IVIg, and, at what point will the cellcept end for her? My immune is doing this without previous experience, just a good working relationship with Duke U. (I have no insurance to see them) and I worry because we are seriously in the dark here. How long after adding Cellcept to your dd's protocol did you start weaning her? How is she doing now and what is her protocol? Thanks!

Hi Joybob~ Sorry I didn't see your PM or this thread until now. I think since you already had a child where they didn't follow the IEP you already have your answer. I don't think waiting for the evaluation results would change the picture if you waited, but, I don't think that's your answer. The evals done for my dd at school were useless. Her private neuropsych eval gave me incredibly detailed data on so many indices that would have helped here in any academic setting. Also, it made the school district sit up and take notice because it exposed her cognitive deficits. Speech/Language, OT and Psycho-ed won't do that. If you can afford a private school that you think will accommodate your child's needs, I would do that. My PANDA needed a para. Her neuropsych eval explained why. Dd would not have gotten this level of attention at a private school. I actually think she would fall through the cracks there because she needs re-directing, organizing, scribing, de-escalating, etc. even if she only needs a bit of each every day, there is no way any teacher, public or private, would have the time to do this well for her. I wonder if the NIH evals were of any use for you here? In any case, I would def. find out when the evals will be completed (possibly wait for that just to get your info.) before making any decision. Curious as to why the school has 8 weeks to implement an IEP? that's a long time...

Joybop~ The NIH study is not specifically geared towards PANDAS, it is a general study to see if there are genetic connections in families for a variety of behavioral disorders, PANDAS being one of them. I hope you get some valuable information that is useful to your purpose for your child. The difference is that a neurpsych evaluation is specifically testing your child against all other children at the same age for cognition. My dd had a previous evaluation for gifted testing, so, it was easy to compare and see the decline in my dd's cognitive abilities in black and white. It was a way of gaining respect and total acceptance for all of dd's impairments instantly without having to "convince" the school district she had them. It was right in front of them and done by an independent evaluator (Tampa General Hospital).

peglem~ that's exactly the problem I have with my dd getting a functional behavior assessment. All the school sees is the anxiety, OCD and ticcing. What they don't see, or want to see I should say, is the cause behind the anxiety. My dd's anxiety at school is caused primarily by her cognitive deficits. It wasn't until I produced her neuropsych evaluation detailing those deficits that the school district finally understood what was driving her. When they sat in the class and watched her run out the back door, they ASSUMED it was because of their "invented" behaviors for her since they also could not understand what was going in her head. My atty. said to let them do it (it's required, legally, here for an IEP to be put in place) even though I cannot see it's value. He said it would help them put together a plan for dd's paraprofessional to implement. Well, I have already given the para training along with a functional behavior analyst I used who also happens to have a child with PANDAS and autism. Can't do better than that, I would think. Ugh! I started this process last April and it is now January of the following school when we will finally circle back and meet to determine whether dd gets her IEP or we go back to court with them. The whole process is flawed, if you ask me.

A Neuropsych eval was the best thing I ever did for my dd to get her the support she needed in school. My dd was not in the midst of her onset, or, a terrible, horrible, awful flare when I had it done. She was just her usual cognitively impaired by PANDAS self. It explained in micro detail every single area that is required for academics. Luckily, my dd had an evaluation done prior to kindergarten for the gifted program in school so I had a baseline for her. She exhibits scores that went from "highly superior" in all indices to average, below average, borderline impaired and impaired. Seeing that stopped the school administrators cold. They were able to see exactly where dd had dropped off and what her biggest problem areas are now (working memory, executive function, processing speed and math). That test combined with her psychiatrist's recommendation that she have a one on one dedicated aide got her that aide (along with the help of a special ed. atty.). I think it is a critical piece of the equation when a school district is pushing back, as they were in our case. I think this test should be done where the school is just not listening.

BTW... I did not have a school social worker do my dd's developmental review, it was part of her neuropsych eval. I would get an advocate a.s.a.p. They are not expensive. You should not, IMO, talk to the social worker. Smartyjones is right. You never know what will come of your mtg. or how the info. will be used in the end. I would start getting my ducks in a row.

I know the test is super expensive . What are you going to NIH for? The test won't be PANDAS specific. It is a measure of many detailed indices related to one's ability to learn, take tests, read, comprehend, verbal skills, working memory, executive function, processing speed, etc. if you give me your email address I am happy to send dd's eval so you can see what one looks like. A developmental history is a combination of any known info (previous testing info, school grades, etc.) plus what info. you give them about your child. My dd had previously been tested for the gifted program 3.5 years earlier so the tester had that eval and a baseline for some comparison. My verbal history of my dd supported the sudden onset aspect of her sharp drop in abilities. With HD IVIg treatments dd is recovering in many areas, but, some are not responding as well to treatment.

Joybop~ Honestly, if I hadn't been allowed to transition my dd and sit with her every day in the academic environment, I would never have had any idea of what was going on either. I would have just automatically assumed it was an anxiety problem, as many PANDAS parents do, when their child doesn't want to go to school, or, has problems there. Instead, I got the opportunity to witness firsthand what was going on and, while I had not idea what the problem was, it became clear to me that something else was happening besides just the anxiety. Once dd got over the anxiety of going back to school (starting , actually) in Mid April for the school year, I saw that even with a boatload of help from her friends, prompting and directing, explaining things to her (ie. which book to use, which books were in the cubbies vs. desks, etc.) she still couldn't follow along and keep up. Have you considered a neuropsych evaluation? I found a hospital (4.5 hours away!) that took our insurance and covered it. I got an Angel Flight for us to travel there. Was worth all of the effort. Was the single most important thing I did for dd re; school. Even more important than getting the lawyer, but, that was key as well. I had to go to a meeting with 14 people including my lawyer and Certified Behavior Analyst and myself. The rest came from the school district side! Honestly, they were all shell shocked when the neuropsych eval results were brought up. Gave them the most incredibly detailed info. they could ever want and then some. They all went white and clammed up when they saw what an independent Hospital eval had to say and the psychologist/tester directly related her deficits to her PANDAS.

No worries. I was not upset by your post at all. I was trying to explain that if your son is on the floor 20x every 45 min. as you say, and needs so much help getting organized I would think you should be asking for a full time dedicated para (paraprofessional) that is one on one. It is the best thing for any child needing that much assistance. Somehow, a one on one para is considered an accommodation on our 504. It is also offered on an IEP. Here, the IEP is meant for services. But, my dd doesn't need the services they offer, yet does provide for an OHI which she needs in order to have her medically based disorder recognized Her IQ score dropping had nothing to do with missing school. She had previously been in the gifted program and working 1-2 grades above level in every subject. The drop was caused by her brain inflammation. In any case, I hope you can see past the stigma of an aide. It has turned my dd's educational experience around 180 degrees. She got 4 A's and a C (in math, of course) this marking period in the Gen. Ed. program and she's having way fewer issues, zero trips to the nurse or phone calls home to pick her up. I hope you get what your son deserves and needs.

"I am also not looking for a one on one aide. That would be an awful thing to make the child dependent on another person. I am simply asking for a an aide to placed in the classroom to help the teacher. How can she be expect to teach my child or any other child if my child is on the floor 20 times in a 45 minute period." Joybop ~ My dd's Special Ed atty. was free because it was based on income and since I can't work due to dd's PANDAS, I qualified easily. She missed all of 2nd grade last year due to her disorder. Made it to 1st day of school and that was the end of it. She couldn't be tutored until February, even though her HHB began in December, because she was debilitated by her disorder. She was passed through from 1st to 3rd grade without ANY assessments or evals by the school. After treatment, I got her on dual enrollment in April, just to try to transition back to school (physically get her in the building due to her extreme anxiety). That took 6 weeks and failed miserably. The reason was, and I was able to see it during that 6 week process of pain, that it wasn't anxiety causing the problem. It was the cognitive deficits and executive function issues that were overwhelming dd resulting in anxiety, increased OCD and tics! Thank god I went with her and sat through those classes (not that she would let me leave her!) and saw that something else was going on. I got her a neuropsych evaluation which revealed all her issues in incredible detail including a 59 point drop in IQ from 160 to 101! (*yes, all children drop in IQ level when testing is done at an early age, but, even if 30 points is average, another 30 is EXTREME!). The school accepted this eval and it finally got them to sit up and take notice. This along with the special ed atty got my dd into a pre-trial conference and a got her a para 3 days later. Joybop ~ the reason I copied your comment at the top of my post was to respond and say that you are incorrectly assuming that having a one on one para would MAKE a child be dependent on them. On the contrary, without a para my dd couldn't function in school at all. She couldn't get past the first 15 minutes each day if she didn't have the para to unpack her bookbag, turn in her homework, put her bag on a hook, get out today's books, copy the posted work from the whiteboard into her weekly planner, etc. and organize her. Her short term memory is shot, so, she can't remember simple instructions and can't be given more than one at a time. Of your ds takes 1/2 hour to get packed at the end of every day and ends up on the floor 20x a day, then, I would strongly suggest getting a neuropsych eval and a dedicated para to support your child's needs. My dd is the only child out of 800 in her school with a para, and yes, it's not what anybody wants for their child, but, may be what they need. Her para does her best to foster independence while constantly being available to my dd. Jferinga~ my dd is currently being assessed for an FBA in order to determine need for service and I just don't get it at all. I don't see how a behavioral plan can help with medically driven cognitive deficits and behaviors. My atty just kept agreeing that they have to do this. There's nothing they can come up with that will fit my dd's situation. It seems like the SChool District is on autopilot here regardless of what is known about dd's PANDAS disorder.

My dd's school did nothing until I went to Legal Aid for a special ed. atty. Then she got a one one para based on her neuropsych eval and MD recommendation. Our 504 provides this, but, at our next and last we plan to fight and get it provided in an IEP. They are resisting the IEP because even though they are already paying for the para, I think there must be some type of penalty to them if it's provided through an IEP.

Could it just be straight puberty symptoms, then?