T_Anna

Thanks PowPow! Turns out CellCept is a specialty med thru UHC so I had to plead for a dispensation for our first round and got it from the local pharmacy. Also thanks for the tip about avoiding the generic, made sure that was followed too. Now just need him to get out of the bathroom so we can start tomorrow morning. Wish us luck!!! T.Anna

Thanks!! I will keep you posted!

OK, we will be trying CellCept. After 2 HD IVIGs and PEX and then another 4 HD IVIGS + steroids and IV steroids we have only seen minimal improvement. We are taking the plunge and trying CellCept. Wish us luck. Thanks as always, T.Anna

Someone bought my kids a joke book and they were reading some of the jokes out loud. This one was over their head, but it was appropriate: Q: What's the difference between a asocial worker and a rottweiler? A: It's easier to free a child from a rottweiler. T. Anna

Here is a link of the blood test link: https://www.dropbox.com/s/vlns07ydp6tpxwy/tests.jpg DEFINITION OF PANS+ F. PANS-plus (more chronic complex disorders evolving from PANS) a. With schizophreniform features b. With primarily affective features c. With anarthria d. With anorexia e. Almost always, an additional underlying illness f. Possibly progressive From Dr.T's Blog: http://pandasinstitute.org/blog/2013/10/10-9-2013

DS15 tests positive for Hashimoto's Encephalopathy and Neurosarcoidosis. Dr. T has added many of the AE markers to his blood tests and we will be running them today on my other two kids along with all the other tests. I agree with PowPow that there is a certain severity that comes with the AE + PANS afflicted child. It is the PANS+ that JoyBop has also mentioned. Please keep in mind that a steroid burst and taper are very low doses when truly treating AE. We only saw microscopic improvements until we did PEX + 4 HD IVIGS + IV Steroid and 80 mg/day Oral Steroids..... We are still FAR from functional, but there are many more glimmers. We hope to start CellCept within a week.

My DS15 had PEX in August. It was after two IVIGs didn't seem to help very much (eliminated dilated pupils and some rage). The PEX didn't seem to do much either, but now we think maybe it was helpful, we have had another 4 HD IVIGs and he's in a much better place (sleeping, eating, walking around the house), but he is still homebound and still struggling with many OCD issues. We did do well on high dose oral steroids and with IV steroids. We ran Cunnigham Panel and tested his ACE levels (neuro sarcoidosis), SED rate, Thyroid Antibodies, etc. All the above came back positive/elevated. DS tests positive for Hashimoto's Encepholopathy as well as Neurosarcoidosis. Also, he is taking a bunch of antibiotics that are helping (we think). Augmentin, Valtrex, FLAGYL, minocycline, nystatin, Japanese knotweed, olive leaf extract, thyroid support, synthroid. I agree with PowPow. Find someone who will test these things as well. T.Anna DS tests positive for Strep, MycoP, EBV, Coxsackie. He's negative on WB Lyme but I won't be surprised if + on Igenex. His immune system is "broken" he was symptomatic since the age of 2, we had No idea : (

My son did not do well with Deplin. T.Anna

My son was really hitting stride in math in 9th grade and was placed in the highest Algebra. It was right at the beginning of 9th grade that he started falling off the cliff. He could no longer add 3+2!!! Dr.T talks about this in a recent radio pandas show. They lose the ability to retrieve math concepts but can sometimes still learn new concepts or more complex math. It comes back. DS is still homebound, but over since the fall (1 year after things started falling apart), he says his memory is back and he can function math wise. We'll see he just took his first assessment with LS online school (first time he's doing school work since January 2013 : ( Once he feels better, he still has a lot to catch up...almost 2 years if HS. T.Anna

I would keep him home, say he's sick, flu/something. On Friday I would ask to have a little farewell party with donuts or something so that he leaves on a higher note. T.Anna

CellCept is an immunesuppressant that is used a lot with AE. See the post on CellCept, PowPow linked the video from the Duke practitioners as well.

PowPow, thanks for responding. Many on the HE Facebook group also use CellCept so I'm beginning to think we should too. Anyone else out there want to answer??? PLEASE!!!!!!!!!!!! It might help my doctor prescribe it. DS15 did the math per-assessment test for Laurel Springs Algebra yesterday, first time he's taken a test/done school work since January 10, 2013!! Thanks as always, T.Anna

It is an immune suppressant. From WebMd: Mycophenolate (CellCept) is used in combination with other medications to keep your body from attacking and rejecting your transplanted organ (e.g., kidney, liver, heart). It belongs to a class of medications called immunosuppressants. This medication works by lowering your body's immune system activity.

I know that there are a few kids here that are on CellCept. I am trying to get more information to see if it is something that make sense for my DS 15. My DS was dx with PANS in November 2012 as he was falling off the cliff of health and functionality. It is obvious to us in retrospect that he had symptoms as early as 2 years old of OCD, Rage, frequent urination, separation anxiety and Speech Regression. He was recently also diagnosed with Hashimoto's Encephalopathy, which is appropriate as he fits well in the PANS+ category. Treatments: Various Abs&Antivirals: Augmentin, Azithromycin, Doxcycline, Minocycline, Valtrex, Nystatin, Diflucan HD IVIG: 6 Steroids: Oral LD and HD, IV Steroids Plasmapharesis Supps: OLE, Japanese Knotweed, All the treatments (except psych meds) have brought our son back an inch at a time. However, we still have miles to go until we are functional. Currently, DS is probably an 8 or 9 in severity as he can function, eat, even cook and read, but does not leave the house, shower or go to school. Does/has your child take(n) CellCept? If Yes, dose: Current Age of Child: Guesstimate of how long they've suffered: Other treatments tried: Were those successful? To what degree (functional/non-functional)? Does your child have another AE dx? Has the CellCept made a difference? If yes, to what extent? I'm going to clean my inbox in case anyone prefers to PM their answer. THANKS in advance, T.Anna My question:

We got our blood test results from Dr.N by faxing a release they faxed us. I think his secretary gave me a number to call at the hospital lab. We got the results the same day we faxed the request form. HTH, T.Anna

Dr.T has been amazing in helping our son! He does triage patients, so he deals with the his patients in crisis first. A majority of his patients are super severe: catatonic, anorexic, literally at death's door. I always try to make an appointment to talk to him. Yes, that makes it expensive, but I try to do my own research and know as much as I can in advance about what we will discuss and once he is on the phone he never rushes me off. I have also found the secretary always very kind. His level of involvement is definitely not for everyone, but I cannot say enough good things about him and his treatment of my son. As an example, we had a very negative experience at NYU with Dr.N, so these experiences really vary by patient. There are already too few doctors treating this illness, let's try and critique in a constructive way. T.Anna

There can be a connection. Dr. T calls it Pans+, it describes kids who have prob had pandas for years and years and it went I diagnosed (and untreated), the end up getting another autoimmune illness. I'm probably not describing it accurately, you can read it on his blog. http://pandasinstitute.org/blog/2013/10/10-9-2013 Category F is pans+ There is Hashimoto's thyroiditis and Hashimoto's encephalopathy you can have one without the other HE is an AE illness and what my son has. T.Anna

Just spoke to the doctor, he thinks that the maybe the steroids contributed to the problem. He thinks we should wait until Monday/Tuesday before trying again. Probably steroids (he's tapering down oral for H.E. and IV steroids two weeks ago) and dehydration and perhaps some nursing issue where she kept sticking him hoping it would work. We will also change push meds to oral (Benadryl, methadextrone). Thanks as always, T.Anna

It was the push. He always has difficulty with the push, but this time it was harder. Yes, the drip is always fine. Needle placement- that was what was bothering DS. That he felt the catheter. She tried twice and did have a hard time finding veins. Dehydration- yes, he was probably dehydrated, he has been drinking since she left so maybe he realizes it was an issue. I'm not sure the nurse was confident. She was stuck in traffic and it was almost 7pm by the time She tried a second vein. I think DS's anxiety was growing, my parents were here and it was getting way too stressful. Will talk to Dr. Tomorrow morning and see what he advises. I definitely think maybe a new nurse will help even if we wait until next week Thanks everyone!!! Sometimes this stuff gets so crazy, that's it's hard nit to fall apart with each set back. Thanks as always, T.Anna

Our IVIG just fizzled!! DS15 who has had 5 HD IVIGs couldn't tolerate the catheter or the saline push. He felt the Benadryl being pushed and was in a ton of pain!! We had to stop and send the nurse home. Has this ever happened to anyone? DS never minds IVs, he's always a trooper with this stuff. Can it be too many steroids? Synthroid? He has bruises all over from IVs and blood tests can this also be why they aren't healing? Need Feedback, PLEASE! If I can try again tomorrow, should I try to give him a sedative? What would work? We've never had success with Ativan. T.Anna

My DS didn't do well on it either. T.Anna

JoyBop, what you describe is VERY symptomatic of true Hashimoto's Encephalopathy. Glad it passed. T.Anna

Interesting about time to take the meds. On the bottle it says only in the morning, I will ask for another prescription of the name brand. Today is a down day. He was stuck in the bathroom again yesterday and I'm starting to lose faith that we know what we are doing : / T.Anna

We are taking the generic, I'll call and ask To switch. DS is on 50mcg, we'll see what happens. Last night he was still awake at 2 am so it might have had an effect already since we haven't changed anything else. I'm still trying to understand how all this works. I'm still on the prologue of the HE book. T.Anna

http://www.pandasfundforstefanos.com/About.htm Does anyone know how he is doing now? Thanks, T.Anna