Allison

I was just posting elsewhere about a product my Naturopath gave me, "BCQ" by Vital Nutrients, that is basically Bromelein, Boswelia, Curcumin, and Quercitin. I've seen it on the shelf at the drugstore chain Pharmaca. It's a great anti-inflammatory combination, and the brand quality can be trusted.

Hi, Nice to be where the teen parents are! My dd16 was on 5 day Pred with limited, if any, improvement, but then we put her on a full month (2 weeks + 2 weeks taper) and showed tremendous improvement during the time she was on the steroids. She gained a LOT of weight, and it's not come off yet, but it's only 10 days past the last taper dose. One thing to realize, though, is that the OCD/dis-ordered eating/body awareness is a symptom of the inflamation. Emma hated oatmeal and eggs, then on Prednisone with her increased appetite and decreased symptoms, she was happy to eat those foods. Maybe your son's severe body image issues will lessen on the Prednisone. I have to say, though, that the symptoms have almost all returned now that she's off the steroids. We're thinking of trying another 5 day burst, just because she's really suffering right now. So are we, for that matter. If your son is into natural remedies, he could really do this community a great service by searching out alternatives to the very harsh drugs. I'm a granola mom myself, and would never in a million years have thought I'd be happy to shovel antibiotics and Prednisone down my daughter. I joke that it was the Lexapro that was the "gateway drug" for her! Curcumin, Quercitin, Boswelia, and Bromelein are all very good anti-inflammatories, and come in different supplement formulas. The one I like is "BCQ" by Vital Nutrients. I used to get it from our Naturopath, and now I see it at the drugstore chain, Pharmaca. Also, remember that Omega 3 Essential Fatty Acids from Flax and Fish are natural anti-inflammatories. Whatever formula you choose, check the quality, as oils go rancid (oxidise) when exposed to air. Look for products that have been nitrogen treated. Finally, check out the Dr. Bock book about his "Healing Program" for "The 4-A Spectrum Disorders." Sorry, title from memory. He's a DAN! Doctor, and his protocol involves detoxing (MSM, chelating, etc.); diet change (gluten/casein free); supplementation; and medicine. He even goes into PANDAS a bit, and I find his approach ("moms know") to be refreshing and in line with my understanding of health and healing. I think your son sounds awesome, and I hope that you've heard back from your doctor by now and that your boy has decided to carry on with the Prednisone. It really is amazing when the kid comes out from behind the veil of symptoms. It's like a whole new person you've never met before. Good luck, and let us know how it goes. Have your son post some of his findings about more natural and alternative solutions to the chemical treatments. Allison

Thanks again. I made a mistake about her Pred. dose. It's 10 mgs per pill, which she takes 3 in the a.m. and 3 in the p.m. So it's been 60 mgs per day. Duh, spaced it! She's been through Biofeedback training for her pain and other symptoms, and she says it doesn't really help her breathing. I am wondering if it's an allergic reaction to something. Her diet is atrocious. Mostly milk, yogurt, and peanut butter with Nutella on wheat bread. She likes Teriyaki, sushi, and sometimes burritos. Spaghetti last night for dinner. Anyhow, I continue to monitor, wait and watch, watch and wait. Headed into another evening of TV and insomnia! Allison

Hi. Quick answer: 1. Lexapro helped my older girl on very low doses (5 mg) back when we thought it was "Amplified Pain Syndrome" with anxiety and depression. Helped manage the aches and pains. When symptoms got more severe, including suddon onset of OCD, we upped it slowly to 15 mg, didn't do much for her, weaned it down to 5 mg, then took her off because it didn't seem to be doing much at all. 2. My younger dd11 had a severe reaction at even 5 mg when used to treat her anxiety. I won't ever give it to her again. Ever. Helps? A

Thanks everyone. Very interesting ideas. Some answers to questions: 1. Yes, it was a throat swab in my daughter, and ours is a Pandas doc who knows to do full panel and send away for lab results. The G info was passed on during a brief call about other dd, so I have yet to learn more about it. Your info helped, thanks. 2. I've never heard of this "costo" thing, so I'll ask her doctor about it. No chest pain reported, and she denies any anxiety. 3. We started the Augment. Sunday night, so only a few days. This is her second round on both the steroids and antibiotics. It doesn't seem to help at all, but it didn't during the first round either. After that first round, though, we did have some good, clear time when she was up, out and about, did some homework with the tutor, etc. We've even arranged with school for her to start going again with the new semester that starts next week. I agreed to this new round because I thought we could slip it in before she went back and could get another post-round "bump." Or is it a "post-blip bump?" We're really pinning a lot of hope on the IVIG, which we need pre-authorization for, so keep your fingers crossed!!! Thanks again for the input, it really did help. Allison

Hi, My dd16 is on day 5 of high-dose Prednisone (10 mg) and we've opted to go for a weaning month. We saw a worsening of symptoms within a day of starting this course, OCD, extreme irritability, head-picking, fatique, day/night flipping, etc. Doc called this a "blip" and we switched from 2xice weekly Azith. to daily Augmenten. For the past 3 days she's also complained of breathing difficulties, to the point that I was calling Doc's office wondering whether ER was needed yesterday. We just kept her under adult supervision at all times, which meant an upopular outing to her sister's swim practice. But at least she did it. Last night she woke us up several times with insomnia, shortness of breath, and continued peevishness. She ended up camping out on our floor so that we could at least get some sleep. So, my real question is whether these are exacerbated symptoms or just side-effects of the meds? Doc thinks the former, and the breathing issues sound like a panic attack, which makes sense. But still I worry. Anyone else out there have a similar profile or experience? Everyone, including the dog, (except my husband) has been swabbed for strep. I'm clear. Dd11 has Strep-G (what's that?) and will be tested for Pandas next. Waiting to hear about dog. Anyone know whether bunnies can carry strep? Thanks, Allison

OK, so we still don't know for sure whether the 'roids and the rages are linked. My 16 year old daughter is on her second 5 day dose in 2 or 3 months, and now it's day 3. She's been way more irritable and her OCD has ramped up. She has thrown things and sworn at us out of anger and outright frustration. Being older, she's more able to keep a lid on things than the younger kids, and also to tell us how she's feeling. She's in a really bad place right now. Her doctor said that if it was just anger/rage issues, then it would be the steroids (pred. 10mg/day.) But since her OCD has increased, along with some marked regression, doc says it's definitely a PANDAS "blip." She ordered daily Augmentin to replace the twice weekly Zithmax we had her on. Now we have to decide whether to end the steroids as planned after 5 days, or carry on for a full month course. I am still worried about the anger issues, as it seems to be linked, even though I'm told it's not. Also, Doc says that side effects to worry about are in the endocrine system. Anyone know about that? It's so frustrating not knowing what's really going on in her body! I hate trusting these harsh chemicals to take care of my precious daughter, knowing the side effects could be almost worse than what's afflicting her now!!!! Argh!!! Thanks for letting me vent. Allison

Hi, Mrigsby, You have my support as well -- I really feel for you! Here's some more free advice: 1. ENT specialist helped my dd with her sinus infection by prescribing steroid nose spray at same time as the 5 day steroid course and antibiotics her pediatrician prescribed for PANDAS. The ENT didn't know anything about the weird-sounding stuff, but just thought the spray would help at the same time as the other meds. 2. Tell us about your support system for YOU. Took me 5 years to figure out how to get my "oxygen mask" on me first, but now that I am, it's helping dd and the whole family way more than before. I see a great therapist weekly, and I'll be starting group therapy soon. Turns out my daughter's episodes triggered PTSD (post-traumatic stress disordor) in me because my mom had a mental breakdown when I was a kid. Go figure -- I fall apart when people I love are falling apart! Hmmm.... 3. Take advantage of this next round of meds to take time to find a new Dr and new medical guidance to treat your son for PANDAS. Call everyone you can, email the other mom in Kentucky, find out about your insurance coverage limits, etc. Clearly your son is not perfectly healthy, and that Dr. should know better than to tell your son he'd do the test to "humor" you. Not good psychology, let alone bedside manner. Ditch him and move on! 4. Start a new thread for others to support you better. Call it, "Need Support and Info" or "Need to Ditch my Dr." or something like that. I didn't read this thread for days because of the topic title. 5. As you face the new year, please know that we are all with you, because we've all been there, and we all continue to move forward through this experience; together. Allison

Hi, everyone. This is my first post after "lurking" for quite a while. I have a teenage dd (16) who is a cheerleader and good student. She's been out of school, her senior year, for two months and we don't know when she can go back. We live in the Seattle area and do have a great pediatrician who has been steering us through the PANDAS waters. We've done a Cunningham blood test (cam kinase 200) and antibiotix & steroids. Lining up IVIG or possibly plasmex, tbd. Her brief history is that she never had any strep infections that we know of; but in 6th grade she had a "meltdown" that is difficult to describe, but fits many of the descriptions I've read on this board. After a few months and about a year of equine therapy, she seemed to pull out of it, with no PANDAS mentioned or any drugs needed. Her Junior High and early High School years were up and down, with lots of tummy aches and brief periods of irritability/stress/lowered grades. She always seemed to pull out of it, usually with the undertaking of a new sport that would offer new social groups to interact with. We put it down to typical teenage angst, plus some emotional development issues linked to having moved here from England when she was six and putting her into 2nd Grade instead of 1st, etc... This past year has been different, and her episodes seem to be linked to a mono illness last January, and a high fever illness this past September. All of a sudden, she's OCD in October, which had not been previously noted by the therapist she'd been seeing for a year. A therapist, btw, who is a specialist in adolescent OCD CBT! So, now we're in "Loopy Land" with all sorts of issues and problems, and it's just so nice to read everyone else's stories and share information. I feel like we're only now beginning to understand what's really been going on all these years, and I hope that it will help us make better choices as we go forward. Being fore-warned is being fore-armed, or some such expression. I'm really interested to know if the teenagers just grow out of it eventually, or if my dd can look forward to her entire adulthood with this? Thanks!