NancyD

We tried it for the first time recently and it took 2 weeks before we saw any change.

For years DD held it together at school and then fell apart as soon as she arrived home. My favorite line from the public school administrators..."I don't know what you're doing at home, but she's fine at school." It is not uncommon for kids with PANDAS, bipolar, ADHD, tics, and other similar disorders to be able to hold it together at school and then explode at home where they feel safe and loved unconditionally.

You did fantastic!! I'm sitting here laughing at your great comments! Nancy

We've done two infusions at 1.5g/kg and both times it took exactly 2 1/2 months to kick in. Once you push your way through the bad stuff it's worth the wait. DD14 is back in remission - or as close as she has ever gotten!

Actually, to this point, I would write a letter to the School Superintendent to complain about what happened. The counselor NEVER should have said anything so inappropriate in front of your son. Particularly one who has such high anxiety. Keep the letter factual, explain his medical condition and his behaviors, and if you have an attorney, I would cc him/her. Schools don't like lawsuits! Also, keep a log of who said what and when. I like to document EVERYTHING! Nancy

This is something I have always feared! I keep an up-to-date emergency file on hand at all times that includes insurance information, current medications, test results, letters from my DD's doctors describing her medical condition and behaviors, articles that explain PANDAS and treatments, DD's IEP, letter from DD's counselor at school, etc. Anything I might need in this type of situation or in case of an emergency. Brief video clips would also be good. I also took a pre-emptive measure by visiting the police and letting them know about my DD's condition and what happens. It really helped a lot when I needed to call them last month! This is the time you definitely need your doctors and any other team members to rally around and support you! Nancy

Mary, I just read your post about your DD's recent exacerbation and your ER experience. My heart goes out to you and I am sending you lots of strength and courage to weather your way through this ordeal. As you know, we recently experienced a two-week nightmare at the hospital...including two days/nights in the ER psyche lockup where they had little experience with children and showed no kindness or compassion. And once she was transferred to Children's Hospital there was nothing they did that I couldn't have done at home. Although we did experience some compassionate doctors and nurses at the second hospital we certainly could have done without some of the stupid comments and "all-too-knowing" looks from the other nurses and doctors. Clearly, educating ER and other healthcare professionals is a priority! Kudos to you, Sarah, for doing what you did! If it's not a clear-cut medical or psychiatric condition very few healthcare professionals know what to do. While the rages were really bad for many years I find that puberty makes them so much worse. Our recent experience has forced me to be better prepared and have a plan in place when the next exacerbation hits because I don't EVER EVER want to find ourselves back at the ER! For starters, I have found that no amount of behavior modification, ERP, or CBT works in the heat of a rage. The best I can do is to isolate myself (since her anger is usually directed at me and she's too big for me to try and contain) and not engage with her at all. That is the only way she will de-escalate. Next, I discovered there are 24/7 psychiatric crisis teams in MA that will come to your home in this type of crisis and help you deal with the situation and try to avoid going to the ER. You may want to check and see if there is anything similar in your state. Now that we have tried a steroid burst and had success with it I will keep a script on hold at the local pharmacy at all times. My daughter is already on 1000 mg Augmentin xr bid so we are set with antibiotics (I have found the increased dosage makes a big difference) and for now she will remain on Diflucan as long as her liver function is within normal range. I am also keeping Risperdal on hand at all times in case she goes into another severe exacerbation -- I know I can give her 1 mg as needed to calm her down and that seems to be the only psychiatric med that helps her...at least in the short-term. Understandably so since she has extremely high dopamine levels. I know you are planning to do IVIG and I hope you have great success with it! We had one whole year with very few symptoms -- just some anxiety and OCD. I think we may be back on track because of the recent high-dose IVIG in mid March. I find it takes my daughter exactly 2 1/2 months for the high-dose infusions to kick in. The other things I find helpful are probiotics, omega 3, NAC, quercetin, transfer factor, and eliminating all dyes and additives from her diet. She takes other supplements but these are the ones that I notice make a big difference. Whenever she eats anything with red or blue dye in it she gets very dysregulated. I even have it written into her IEP that she is not allowed to eat anything at school with dyes or additives, but at age 14 she will find a way if she wants. And if she ingests it right before getting her period, watch out...there is no living with her! If you haven't already you may want to consider having your daughter's hormone levels checked. These are just a few things that work for us. Keep us posted, Mary, and let us know how you and your daughter are doing. Nancy

Fantastic idea. Count me in too. Thanks for doing this, Eileen! My heart has been so heavy ever since finding out last week. Nancy

I'm wondering the exact same thing. Went to refill yesterday and we got a generic.

The subhead was supposed to read... If you aren't nuts when entering the system, surely you will be when exiting!

Hi all, My DD14 was finally released from the hospital this week. I would like to thank everyone who sent posts, PMs. emails, text messages, and phone calls during this very difficult time. It really helped to keep me going. Between the insurance, medical, and mental health care ineptness, red tape, broken systems, and endless road blocks, I could not imagine a worse nightmare for any child or parent to endure! It was truly a sad reflection on our healthcare system. My daughter has had some pretty bad PANDAS exacerbations over the past 11 years but this was truly the worst. I'm sure the stars were aligned to perfection -- saw-tooth healing from the last IVIG infusion, a series of viral and staph infections, her period, and normal teenage stress. I will spare you the gory details, but sufficed to say it was a life changing experience. Every possible system failed us...and here I thought Boston was supposed to be one of the top cities for medical and mental health care. The damage from this ordeal was horrific and it will take a long time before we can heal fully. If I only had one takeway nugget to share with you, it would be: Do whatever you possibly can to treat your child's PANDAS aggressively before s/he reaches puberty. You do not ever want to go through what I did! Today was the first real day of normalcy since our ordeal began and I still feel pretty shell-shocked. I know it's just a matter of time before the dam breaks and the tears begin to flow... Nancy

Norcalmom, I do know our doc took DD's weight into consideration when giving us dosage. He didn't want us to go higher than 5 capsules (600mg ea) and she is 130lbs.

Isabel, Most of our supplements come from the Rhinebeck Health Center in Rhinebeck, NY and are packaged for them to distribute (see www.rhinebeckhealth.com). It has their own label on it. Our DAN doc is Ken Bock, MD. The NAC capsules we get are called NAC 600 - each capsule is 600mg. My daughter does not take inositol - she tried it years ago and it activates her. I mentioned quercetin above so perhaps that is what you meant to inquire about? We purchase this from Rhinebeck Health Center also and the supplement is called Querciplex. Each capsule contains 333mg quercetin, 100mg bromelein, 20mg magnesium. Quercetin is a natural anti-inflammatory. DD14 takes 6 capsules Querciplex daily. I find it works much better than motrin and no side effects. And it works wonders on colds and allergies...I take them too. Nancy Nancy, Would you mind sharing what brand/strength you use for both NAC and Inositol? I get the dear-in-the-headlights look when I go get supplements, and I can't decide what brand/strength etc. My son is really struggling with scrupulosity right now, it's kind of all that's left of the PANDAS at the moment, but it is very strong. Thanks! Isabel

I give DD14 600mg supplements - five capsules per day. She is 130lbs. our DAN doc recommended it. My daughter has a history of low glutathione levels and like Michael said it helps with that. She used to get NAC and glutathione IVs monthly a few years ago and that really helped to clean her gut out. She used to not be able to tolerate gluten, dairy, or soy and now she can eat that. Plus it seems to really help with her OCD. Nancy

We've been using NAC about a year and I have noticed that it definitely helps with DD14's OCD issues. In fact, since using high doses of NAC and Quercitin I have not seen any scrupulocity whatsoever (it was really bad last year). She is still very anxious and Perseverates on certain topics but no true OCD symptoms. Nancy

This is exactly what we have been going through since DD14 was in pre-pubescent years and it has continued to get worse. I am sure that hormones make each exacerbation 100 times worse. In fact, I think hormones are the biggest stressor for my daughter. And like you, I lightened up during those times. Problem is, when I did so, she played on it and as a result, she learned how to manipulate me bigtime and it got worse over the past few years. 'Course, when she was in remission (or as close to remission as we got during that one great year we were doing IVIG), she didn't manipulate me as much. But in hindsight, I wish I had not let her get away with as much as I did. Because now I am paying the price!! Since November, when she was exposed to so much illness at school, her behavior got much more defiant and with the most recent exacerbation a few weeks ago, which landed us in the hospital, she's more defiant than ever before. If I had to do it all over again I don't think I would have caved in so much because she learned what she could get away with during her PANDAS exacerbations and she has taken advantage of it eversince. From here on in, once she gets out of the hospital, I am not going to cave in any more. Because the defiance has grown ten-fold throughout her middle school years. I don't know what the answer is...I really wish I knew. But I can tell you defiance in the early teen years is much more dangerous than defiance at age 8, 9, or 10. It's very scary now! In fact, last week's self piercing of her lip was definitely an act of defiance! One thing I did ~ age 12 was to take my daughter to a neuro-endocrinologist to check her hormonal levels. Turned out her levels were normal but it might not be a bad idea to have your specialist or pediatrician check your DD's hormones. Even at 9, hormones can play a role. With the most recent exacerbation she happened to have her period. I would love to hear from any parents on this topic who have successfully managed the defiance. I too can use some tips. Nancy

I would love that if you are available, Sarah! Nancy

Oh you are so wonderful, Meg's Mom. This is just what I needed. Thank you so much! Nancy

Thank you all for your good wishes, thoughts, and prayers. They are REALLY helping me through this, particularly since I am doing this all alone. DD had a good night -- at her request they gave her a dose of risperdal to calm her down from last night's meltdown. It will only be used as needed. She is much calmer this morning and accepting of the next phase of her treatment. In fact, she wants to go immediately so she can do what she needs to do to go home. It's the uncertainty of not knowing what to expect, when she is going, and feeling like they will strip her of all her rights and choices that frightens her. So far all the test results are within normal range except ASO, though it's only slightly elevated (~250). We're still waiting for Anti-DNASE B to come back. I'm not sure they did all the immune tests they were supposed to. I have to check. Also waiting for yeast levels. If someone can, please cut and paste here the list of immune tests including sub-classes. I don't have them with me and it will be days before I can get home. Sarah, yes we plan to do pheresis there at Georgetown hopefully next month. Maybe we can get together? We have a telephone consult with Dr. L June 1 and we'll see if she wants to move forth. I'm pretty sure she will. I just pray insurance will cover it. Naturally, the team at Children's does not support it. I will give my Sarah your message. Than you all! Nancy

That is something I have been thinking about lately (that is, seeing if I am a carrier) and plan to get myself tested. I have never had a strep infection that I know of but I could be a carrier. It is just the two of us -- she rarely sees her dad. Today I had endless meetings with doctors and service agencies, all while dd was in crisis. Before I left she finally broke down in my arms and started crying (after being so combative and screaming most of the day), telling me how scared she is. My heart is breaking for her!!!! I cannot begin to imagine what it must be like to be in our children's shoes day in and day out. To live with their daily fears and anxiety, obsessions and behaviors, gastro problems, tics, sleepless nights, immune dysfunction, angst over seeing one doctor after another, and being prodded, probed, and picked on... It really breaks your heart! Nancy p.s. I asked the doctor and they may have some of her blood frozen from the day before starting prednisone, so we might be able to do another Cunningham test.

Vickie, She is aleady on 1000 XR Augmentin 2x daily and prednisone 30 mg 2x daily. Then once stable, intensive in-house counseling with other girls her age. Followed by plasmapheresis in June or whenever we're cleared for it. That is as far as we have gotten. Nancy

Thank you for all the good thoughts! I just spoke with Kathy. Unfortunately we missed the window of opportunity for the Cam Kinase test. Can't do it while on steroids as it lowers the numbers. Darn!

Thanks so much, everyone!! I should have thought to freeze her blood earlier in the week but with all that has been going on I have been running on empty. I'll email Kathy now. If the steroid burst works that will be huge. Dr. L wants us to hold off doing another infusion for now (last one was mid March) and we plan to do pheresis over the summer. DD was quite violent, threatened to kill me, and she has been psychotic-like. Then she pierced her lip using a needle and earring (neither were sterile). She was rushed to a local hospital where she spent the first few nights traumatized in a locked-up ER psyche unit while we waited for a bed at Children's Hospital. It was 3 days without any treatment...and child friendly, it was not! She was finally transferred by ambulance to Children's Hospital where she is now getting the treatment she needs. She is doing everything she can to avoid counseling but with all she has gone through over the years (between the ASD and PANDAS) she could really benefit from some intensive counseling. Once the medical team feels she is completely stable on the prednisone she will be moved to a psyche unit for more intensive treatment (no psyche meds!). Will keep you posted. Nancy

Can someone please post or PM me with Kathy Alvarez' contact info ASAP? DD14 was hospitalized on Tues in severe exacerbation of her PANDAS. Now that things have calmed down a bit and we have completed tests (I.e., complete immune and hormone workup, thyroid, ASO/Anti-DNASE B, liver, yeast, etc), it just dawned on me that I should have contacted Kathy to send me a new kit. But I don't have her contact info with me on my iPhone at the hospital. Looks like we could be here for a while. We started her on a steroid burst Friday night and so far no adverse effects. Thanks everyone! Nancy

I have experienced this many times in the past with my dd14. It boils down to wanting some sort of control in their lives and being able to make choices. I like to make her part of the team so she buys in to the treatment. And in the end it's her choice as to whether she gets well or continues having intrusive thoughts, tics, rages, etc. She has never once opted for the wrong choice...thank goodness. Even with plasmapheresis, knowing that she will have to have the line either in her neck or groin. As long as she is made to feel like she is part of the team and has some sort of control she is fine. I also find that bribery works well although I prefer presenting it as a reward. She gave me a hard time about driving 18 hours to/from seeing Dr. L so I told her if she did well I would get her the contact lens she had been wanting for months. Nancy