pixiesdaddy

Pixiesdaddy here - Pixiesmommy shared thoughts from this thread with me and asked me to post the response I just shared with her. So, some thoughts: Repeating IVIG. If Pixie were in crisis, I'd absolutely say yes. If she's not in crisis, I'd say no for these reasons: 1. IVIG cost us $10,000 dollars. About 60% of that was EVENTUALLY reimbursed, months later. 2. IVIG landed her in the emergency room with severe neck pain and vomiting and super high fever. We knew that was the risk, and it was worth it when she was in crisis with PANDAS, but I don't think I could try it again if we weren't at that point. 3. Most importantly, I feel like the symptoms that IVIG was meant to "cure" got cured - the bedwetting, the tics, the aggression, the separation anxiety, the OCD rituals. Those things at 95% better *knock on wood!*. What's left are symptoms that I don't think are explained by PANDAS - extreme fatigue, low grade fever, visual field disturbance. I'm all for investigating lyme because I think there's some other co-infection going on with Pixie besides just PANDAS. She's had repeated strep exposures post-IVIG and she hasn't had gigantic behavioral or neurological flare ups. That's got to be a sign that IVIG strengthened her immune response, right? Regarding keeping her on ABX... I think that you could keep her on ABX forever and always find a reason for it. Her worst times are Sept. and March - you are always going to be going into a tough period immunity wise. But I also think there are long-term consequences to continuing to use ABX. I'd like to see her off of them, assuming that her symptoms stay in remission. I'm all for staying on them if I think they are still necessary to manage her symptoms. Maybe it's just me craving a return to normalcy - but I also feel for my kid. She has worked SO hard behaviorally to get back to a kid who is staying in school, earning good grades, and socializing normally. I want to support her with good immune-lifestyle choices, but I also want to let her take a break from all the doctors, meds, and interventions as it's feasible to do so. Hope that made sense! Pixiesdaddy

http://www.thelymelady.com/lyme-disease-is-it-contagious.htm We are looking at getting tested for Lyme.

I understand the desire for hope and positive news before having IVIG - we've been there. Our DD9 had IVIG last year. We saw immediate results (her tics and wetting issues went away) and some healing that occurred over a longer period of time (rage attacks and low frustration threshold greatly improved) that have sustained themselves for 12-months and through several mini-exacerbations post-IVIG. We cross our fingers every day that her healing will continue, but maybe it can offer some hope to you too. Pixiesdaddy

Hi, My wife mentioned that she had been asked for an update about our daughter Pixie and how she was doing. I always get nervous posting something like this; I often feel like saying anything positive will "jinx" whatever progress we've made, but I know how desperate I was for encouraging stories when we were considering IVIG. So, anyway... Pixie is our DD9. We received a PANDAS diagnosis from Dr. K in September of 2009. We believe that Pixie had been suffering from PANDAS for quite some time before that, perhaps 3 years or more. At their height - the start of 4th grade this previous school year - Pixie's worst symptoms included tics (blinking, shoulder shrugging, finger flicking), rage attacks, day and night wetting, extreme fatigue, extreme separation anxiety. After meeting Dr. K in September, we moved rapidly towards IVIG with his diagnosis because Pixie had gone completely down hill with the start of the school year. She became violent at school and we had to pull her. I had to take a several week leave-of-absence from work because, quite honestly, it wasn't safe having her at home with my 2-year-old daughter and only my wife to try to manage her. In any case, literally within days after IVIG (2-3 days?), the bed/day wetting stopped. We have had one recurrence for one single episode of night wetting in the 11 months since. Also within days after IVIG, the motor tics stopped. We will still see Pixie shrug her shoulders or rub her eyes when she's particularly fatigued, but the constant ticcing that kept her from falling asleep has not recurred. Rage attacks were the worst and they took a good 5 weeks post-IVIG to even begin to slow down. Somewhere around 5 weeks, they began to happen less frequently, decrease in duration and intensity. Separation anxiety and fatigue have lasted the longest. They still recur on and off depending on her health and her mood. We tend, at this point, to treat the fatigue with ibuprofen. If Pixie seems tired, grumpy, or irritable, many times a child's dose of ibuprofen and waiting 30 minutes will seem to right the ship. Pixie used Augmentin as a prophylactic antibiotic after IVIG, but contracted strep on it. At that time, we tried her with Cefdinir, but she still contracted strep while on it as well. We then switched to Zithromax, and she's done the best on that, though we're still contracting strep as a family fairly regularly. We can't seem to get away from it. That being said, she doesn't seem to react as strongly to strep anymore. It hasn't been triggering full blown exacerbations. We'll see upswings in irritability and fatigue, but we haven't seen wetting, rage, or tics return, even with positive cultures. We just try to be aggressive with upping her abx when we know that strep has gotten back into the family and hoping for the best. To aid her immune system in her recovery, we've taken the following steps: 1. As mentioned above, Pixie has been on prophylactic abx since IVIG. 2. We use xylitol gum, ibuprofen, and flax seed oil liberally as supplements. 3. We've modified our family diet to be organic, whole foods and free of gluten, preservatives, artificial ingredients, refined sugars, and pasteurized dairy. 4. We've done Nutrition Response Therapy with Pixie, with moderate success. 5. Pixie still sees a psychologist once a month to touch base. 6. Pixie sees a chiropractor for regular wellness adjustments. 7. Pixie attends equine therapy classes on a weekly basis. 8. We relocated our family, in part to make sure Pixie moved from a private school system to a top-notch public school system which might offer special services. During the year of recovery from IVIG, I ended up taking two leaves of absence from work - both of about three weeks. I am a high school teacher and was lucky enough to have banked sick days which allowed me to do this. The first leave was when she received IVIG and the immediate period post-recovery. The second leave was when we made the switch to the modified eating plan, since it really required a full lifestyle overhaul for the family. At this point, we're so grateful for the progress we've made, but we still watch her like a hawk and are aggressive with trying to support her immune system and managing flare ups/exacerbations. We do walk on eggshells at the fear of a full-blown PANDAS recurrence because we know how devastating it was to our normal functioning as a family, but we try not to let that fear rule our daily lives. I wouldn't ever make us out to be a model of success for a PANDAS kid - I don't think I feel confident enough to say that. Maybe if we get through this upcoming school year in reasonable shape, I'll be more comfortable suggesting that we've seen a full healing, but we've certainly come a long way since last September. Anyway, I hope that helps keep you updated, and if anyone has any questions, just let me or Pixiesmommy know! Pixiesdaddy

Update. DD9 (PANDAS) is currently on 250 mg of Azith every other day. No one else is medicated. Last strep culture for DD9 came back negative. DD9's behaviors have been pretty reasonable. Some emotional lability, some sensory, but mostly on the mild scale. Are we out of the woods with the "indestructible strep"? Who knows... it feels like the worst has passed, but we always know things can change quickly. Thank you all for the advice! Pixiesdaddy

Our DD9 developed bedwetting as a major PANDAS symptom. IVIG stopped it dead in its tracks, and - except for one single event in seven months opst-IVIG - we haven't seen it recur (fingers crossed). I say this only to say that, yes, bedwetting could be a PANADAS symptom and directly "cured" by an appropriate antibiotic or IVIG (or PEX or whatever) if that treatment is effective against PANDAS in general. Pixiesdaddy

DD9 has had a tonsils and adenoids removed. I know she's had tonsil - Pixiesmommy could confirm adenoids since that was before Pixiesmommy and DD9 came into my life. Despite NO positive strep tests by age 5, the surgeon who took out the tonsils commented that they were the MOST scarred tonsils he had EVER seen... Go figure. Pixiesdaddy

My gut instinct would be to say that ANY unusual neurological sign is a good one after IVIG - it means that something is happening regarding basal ganglia swelling. We didn't have night terrors, but DD9's taste buds went through some weird shifts (things that had tasted good didn't, things that didn't taste good previously did) and other asst'd odds and ends in the immediate aftermath of IVIG. The feedback we got from Dr. K at the time was any news is good news. If IVIG were truly ineffective, nothing much would be happening. Hope that helps and encourages, Pixiesdaddy

We saw exactly the same thing with a 5 day steroid burst. Massive improvements and then - if anything - an even worse downslide post-steroids. In fact, at first they suspected steroid-withdrawal rages for our DD9 since it got so bad. That was what precipitated our IVIG because it really sent our daughter into crisis mode, compounded by the added stress of the beginning of the school year. Anyway, yes - we did see a strong remission and then a strong relapse. Pixiesdaddy

Our DD9's PANDAS issue have come with a whole host of sensory things - itches, clothing issues, light issues, sound issues. We did find that pressure and weight can help. We also have had good success with melatonin as a sleep aid. Honestly though - for us - we didn't start seeing significant sleep improvement until being post-IVIG and on significant antibiotics. Pixiesdaddy

Not sure about drooping eyes, but we saw the sensitivity to light. From my understanding, pupils that won't stay constricted in the presence of light can be a clear indicator of adrenal failure, which is basically an overworked immune system. I know that PANDAS DD9 of ours had that. It wasn't something we treated directly. Rather we saw it as a sign of the underlying immune challenge. Pixiesdaddy

DD9 is seeing her pediatrician (not Dr. K) tonight. I can advocate to get her a strep culture. If it comes back positive again, I'm sure we can convince him into the loading dose. If it's not positive, maybe all we need right now is a preventative. But at 68 hour half-life, she's got reasonably good coverage on an every-other day dose it sounds like? Shes 9 and is about 58 lbs. Pixiesdaddy

Hi, We consulted with Dr. K today via e-mail about the itchy skin and sensory issues. The concern raised was an allergic reaction to the Keflex. He said that the next antibiotic to try would be Zithromax. He is advocating 250 mg every OTHER day. In your opinion, does this still leave a window of time within which she's not "covered"? Pixiesdaddy

DD9 was officially diganosed just this past October, but we (and Dr. K who treats her) are pretty confident she had untreated PANDAS since age three, so for six years she was untreated. Her earliest symptom was unexplained, recurrent low-grade fever. Tics were the last to appear and really only showed up when she turned eight years old. In keeping with the turning-back-the-pages phenomenon, it seemed like DD's tics went away first. The fevers, which showed up first, have been the hardest to get rid of, and now that we're in one of the worst seasons for her (early fall is the other one), it's really been a problem. That being said, we're holding our breaths. If the worst we get right now is a little bit of emotional upset, some fatigue, and inattention, and then we get better, we'll count ourselves very lucky. PD

Brief recap: -DD9 diagnosed with PANDAS in October of 2009. -Worst symptoms were rage attacks, shoulder tic, separation anxiety -IVIG administered in 10/2009. -Tics disappeared nearly overnight. -Rage attacks diminished and have nearly disappeared after 5-6 weeks. Anyway, it's been around 7 months since IVIG. On many levels, we couldn't be more pleased. Here's what we're struggling with though... DD9 is STILL getting strep infections. And, as we're finding out, so is EVERYONE in the family (myself, wife, DD2). We all were positively cultured, all went on abx for two weeks, and though we haven't had a follow up culture, given how we're feeling physically, we're pretty sure we're all still positive. DD9 was on 250 mg Augmentin, 2x day. After strep infection, Dr. K (and her ped) changed her to Cefdinir (300 mg 2x/day) for two weeks. Now she is on Keflex (250 mg, 1x day) as a prophylactic dose, though frankly I'm pretty sure she still has strep. I was on Cefdinir (300 mg, 2x/day) for two weeks. Now not currently medicated. Wife was on Zithromax (500 mg/day) she's anaphylactic to almost every abx) for 2 weeks and then started another 2 week course which she is currently on. DD2 was on Cefdinir (1.5 ml, 2x day) and is now not currently medicated. With DD9, we also are gluten free, refined sugar-free. We also do NRT (Nutritional Reponse Therapy). Anyway, here's my question: How do you get rid of a strep infection if augmentin didn't kill it and cefdinir didn't kill it? We can see DD9 being exacerbated (just increased emotional lability, difficulty focusing, fatigue), but we don't know what else to do for her. At this point, we're just trying to trust the abx and other interventions and stay the course. We cross our fingers that she hasn't exacerbated that badly yet, but we don't know day-to-day how she's going to be doing. We know that she has tended to go through seasonal ups and downs with strep and that this is historically the worst season for her. Thoughts? Pixiesdaddy

I don't know about the science of it, but our DD9 clearly got worse after vastly improving on the 10-day prednisolone burst. She really nose-dived right at the end of it. We did IVIG shortly thereafter and she improved on IVIG, so I'm not sure how long-lasting the worsening after the steroids would have been for us. Pixiesdaddy

You asked about IVIG and other's experience with it. Here's ours. We have a 9 year old daughter. She was diagnosed at age 9 with PANDAS, but we believe she has had it for at least 4-5 years. We saw Dr. K as we live relatively locally to him. After a 10-day steroid burst alleviated her symptoms, he diagnosed PANDAS and recommended IVIG. It was expensive ($10,000) and insurance has yet to cover it, though we are fighting with them. However, we have seen such benefit from it that we never question our choice to do it. Many of our DD's symptoms disappeared very rapidly after IVIG and have yet to come back, though of course we know they can. IVIG stands for intra-venous immunoglobulins. It's an IV treatment over a two day period of time. It took 5-6 hours each day for the treatment. Basically, our DD was hooked onto an IV the entire time and that was it. There was no pain associated with the treatment other than the insertion of the IV and the boredom of sitting around. She did have extremely bad nausea and headaches (actually requiring an ER visit) after our IVIG but was much better by the following morning. If you have more specific questions, feel free to ask and I'll share more of our experience. Pixiesdaddy

So... the whole family got tested for strep and we all came back positive. Everyone is now on abx. DD9 - Cefdinir, 300 mg, 1x day for 10 days. Then returning to 500 mg of Augmentin, 1x day. DD2 - Cefdinir, (forget dosage... less than DD9), 1x day for 10 days Me - Cefdinir, 300 mg 2x day for 10 days. Wife - Z-Pac, 5 day course. She's anaphylactic to all other abx. Our ped (who is not a PANDAS ped) was shocked that we all had strep. None of us are showing classic symptoms of it. Waiting to see what the result will be as DD9 recovers. We haven't seen any exacerbation signs... yet... crossing fingers Pixiesdaddy

It's a struggle about strep prevention with our DD if what you say is true. I'm leery of high doses of antibiotics over so long too. We do probiotics, but DD also struggles - seemingly - with a virus pattern (low grade fevers, fatigue, headaches) quite frequently. We've been seeing a chiropractor who does nutrition response therapy - and we're seeing results - but the recommendation has been to avoid sugar and wheat and things which could feed mold or yeast. Thus the fear about high doses of antibiotics... So far, she's been tired and oogy feeling today - consistent with a kid with a bad cold - but no tics that I've seen, no poor behavior, no emotional lability, etc. Took the first dose of cefdinir without issue...

She is just over 50 lbs - 54. So I'm assuming it's still a treatment dose? Pixie is almost five months post-IVIG, but Dr. K's thought was similar - wait and see. When we saw one little blip of eye tics returning (before we ever knew she had strep), he said such an episode could be "self-limiting." Interesting, she has a wicked cold at the moment. I don't think that part is strep, but getting that cold got us to take her to the ped who did the culture that found the strep. Maybe it'll be a lucky cold to help us catch the strep early... Also, in response to your other question, she gets 500 mg 1x per day in the mornings of Augmentin. I did specifically ask if she should take the prophylactic AND the treatment dose, but the encouragement from both Dr. K and the ped was to only take the treatment dose and then go back to the prophylactic dose. Pixiesdaddy

From what I understand, the 300 mg is a treatment dose. I didn't ask that question specifically, but it was prescribed by the pediatrician, and his words were something to the effect of - give her the Cefdinir on a 10 day dose to clear the strep out and then return to the prophylactic dose. That sounds like it's a treatment dose? Hearing her cough as she sleeps tonight - waiting with baited breath to see what kind of kid we have tomorrow...

We didn't just treat with ABX. We treated with IVIG. We saw distinct improvement with our DD9 during a 10-day course of predinose and then didn't see ANYTHING improve until IVIG, at which point improvement happened fairly rapidly for us. Post-IVIG, we noticed improvement wax and wane depending on how much ABX she was on (she maxed at 1000 mg per day Augmentin), but our fears about too much abx led us to decrease her to 500 mg augmentin, keeping an eye on her symptoms.

We have a DD9 and this was a central facet of her PANDAS symptoms. IVIG resolved some of this for us, but it hasn't been complete. We just tried to figure out where our minimum standards were, enforce that, and let go of the rest. She goes to school looking disheveled some days, but we try not to be picky. If she is managing with the rest of it (attitude, safety, non-violence, etc.), we'll just try to ignore our better instincts about her cleanliness sometimes. Pixiesdaddy

Hi, Our DD9 was treated with IVIG by Dr. K in early September of 2009. Before treatment, her symptoms included: -Severe rage attacks -Inability to attend school -Full body motor tics -Bed and day-wetting -Fatigue -OCD (door shutting, toothbrush tapping, etc.) -Eye tics -Finger tics Post-IVIG, she's really done well. Within days, her tics and wetting disappeared. Over the first four weeks, her rages really diminished. She's returned to school, grades are improving, etc. We were just daring to breathe... Well, she just had a positive strep culture today - weakly positive, but positive. So far, no recurrence of symptoms. No signs of anything other than feeling sick. I know that no one can predict the future, but I wondered if anyone else had gotten IVIG, then gotten sick (with strep?) afterwards, and how it went for them. How badly did they backslide? How did you treat or approach it? Dr. K and our pediatrician have recommended switching from her prophylactic dosage of Augmentin (500 mg per day) to Cefdinir (300 mg per day) for 10 days, then returning to the Augmentin. Anyway, thoughts? Advice? Anyone who's been there? Pixiesdaddy

Thought I would give an update on our DD9 (Pixie) who is now 3-months post-IVIG, essentially. I know that we always appreciate updates from others who have been through all of this, so we want to add our story to the mix. Basic summary: -Diagnosed with PANDAS this summer, probably had it for years. -Primary symptoms were rage attacks, big muscle spasms, separation anxiety, bed/day wetting -Did IVIG on 9/10 and 9/11 with Dr. K. -Wetting and muscle spasms disappeared within 1-2 days after IVIG. -Takes augmentin generic 2x a day - started at 250 mg 1x per day, now at 600 mg 2x per day -Supported with flax oil, melatonin, kid calm, calcium vitamins, ibuprofen How she's doing: We are 100% convinced that IVIG had a very beneficial effect on our DD. Her big muscle spasms and frequent wetting went away virtually overnight. She has (mostly) remained non-violent, starting at about 4-5 weeks after IVIG. She still has emotional lability and will get unreasonably upset at certain issues, but has found enough wherewithal and coping strategies to remain non-violent and remain verbal. We do think that she got sick again about 2 weeks ago and we've seen an exacerbation since. This led to the upping of the abx dosage. She's had some resistance to going to school, but has made it to school - one way or another - virtually every day. The biggest problem has been that I've needed to return from my workplace to assist her to school on a few occasions, not a long-term solution. We struggle with how fast and how hard to push her. School is eager to raise expectations academically, where we are happy just to have her attending. We are concerned about her low-level resistance to going to school and don't want to exacerbate that. We have started her with a chiropractor doing spinal adjustments and have an appointment with Home First in Rolling Meadows, IL to discuss homeopathic medicine and alternative treatments. We hired a 7am - 4pm caregiver at first after IVIG to help manage DD. We let her go after about 4 weeks when rage attacks decreased and DD has been managing with a 7am-10am caregiver, off and on, to assist with her getting to school. Overally, we feel strongly about the successes DD has had with IVIG. We are being really cautious with her to maintain her health and support her behaviorally and emotionally as she learns healthy coping strategies again. Pixiesdaddy