Pandasphilly

Yes I ordered empty size 3 capsules which holds up to 8 drops. I never let my child smell or taste it Because I knew I'd get pushback. This way it looks just like any other supplement

T.Anna What time are you administering the evening dose that helps with sleep? We began CBD exactly one week ago and have seen far better results with this than we have with any other thing we've done. And my ds 72lbs is only at 7 drops once a day so there's a lot of room for play. I'm considering a second daily dose.

Yikes we just did IV Vit C & Glutathione today. This procedure is new to me so my question is: Are the above listings something my son may have received intravenously, that I should check with doctor on?

3bmom, I am not attending however I am particularly interested in hearing any feedback you aquire from Dr. Jenifer Frankovitch (finally a rheumatologist!!) and the role of Rituximab or other immune supression (cytoxan, cellcept, cyclosporine, etc). I feel in severe patients this is a vital step in the role of relapse avoidance.

Nancy can you let me know how your dd does? I am considering for ds as OCD is our biggest and most lasting symptom.

Thanks sf_mom! I am going to PM you with question on our planned dosing schedule.

I am interested to hear how your son is progressing. My son was in a similar state and i'd like to consider this for future. Is your son on any other medications at the same time? Do you know of any drug interactions that should be avoided? Do you happen to know if we should remove the SSRI before administering this? It has helped with mood but not OCD. I thought I'd ask in case you have already done this research. So glad for your success!!!!

Well there is the ever looming questionable lyme & co so he's being treated for it either way. His Igenex bands 31 & 34 we are told are indicative of autoimmune disorder. Any thoughts on this? Our Pandas/Lyme Integrative physician seems to think he is more of a severe encephalitis that never received intense immediate consistent treatment, than he is lyme and co, partly because of the miraculous response we have to Steroids and IVig probably. Almost ALL symptoms resolve, headaches subside, neurotypical kid goes to school everyday. The transformation is remarkable. We are retesting the Igenex results once again, we do this regularly after treatment sessions with different antibiotics. But either way we treat Lyme, erlichia, bartonella, pandas etc. He has also had numerous strep, EBV, MycoP, Chlamydia Pneumonia, swine flu, Lice bites on his head, mosquito reactions, etc. He does not seem to improve on any antibiotics anymore, plus he enters refusal stage as illness progresses. I was considering homeopathy but not sure I want to stimulate the immune system as his physician is now leaning more toward suppressing it to avoid relapse since he is in a great place 3 months after IVig. Very neurotypical kid again although still some reduced OCD. We cant figure out if the relapses are just the remitting/relapsing course & turning back of pages with Pandas or if they are Tic borne relapse so we continue to test and treat. I have a hard time imagining there will not be further relapses given his extreme history. But given the lack of antibiotic response and severity of his compromised life we move to IVig when we just can survive another day of this. Also he did an intensive residential program at Rogers to get through the worst of the post IVig weeks. He is 12, acute onset at 9 with strep however many missed symptoms since age 3 and younger.

The next part of my son's treatment plan involves IV vitamin C, IV Phosphatydil Choline and IV Glutathione. Please share any results or reactions you've had with this protocol. Also if you know the purpose of it. I believe it's for immune boosting and detox but haven't researched thoroughly.

My son was also in a condition where he could not leave his room or travel. We found that Vicodin offered great relief to get him to a treatment facility. I know it is a narcotic but used in small doses when necessary it offered great relief in being able to actually GET to treatment. Perhaps they can consider this? Much more effective than any psych med

Hi Ophelia, My son is an extreme side effects responder. Doctors cannot believe his response to anesthia & other meds. They call in other doctors for opionion and to watch it for clinical purposes. It scares them, they've never seen these reactions before. I've heard neurologists and nurses and the whole group watching him say "I've heard of this before but I've never actually seen it". Then they turn to me and I say "I warned you but no one listens". Then they say "next time you have to INSIST we listen" but I already do that and no one believes how bad it is until they see it. So I get where you're coming from. and YES my son gets so much worse after IVig for months (think Howard hughes at the end of his life OCD, panic/anxiety, rage/violence, destruction, tics increase to where it appears he is having severe seizures all day long not a minutes break, head feels like it's going to fall off from movement, severe choreiform finger/toes/wrists. Can't dress, eat, teeth, shower, leave room. Lost 20+% body weight, Plus so much more). And it was severe before the IVig or I wouldn't have done it. Just when you thought it couldn't get worse. You are obviously receiving .4/k if they are doing it daily over the course of a week. I much prefer this if it was available to us. I am thinking the 2g over 2 days is just too high a dose for my son given the way he responds to things, but there must be a reason they need it this high. But then we see improvement a few months later, usually around month 4 or so. Tics disappear, ocd greatly reduces, personality comes back, jokes/laughs, plays, goes to school, brain fog lifts, urinary frequency subsides, sleeps, not hyper. Then wham-o ! Complete relapse worse than before. 3 times now. But we haven't been consistently administering IVig which his doctor would prefer. We pay out of pocket so I need time to recoup. So I too am faced with if we dare consider IVig again because we're barely surviving the many months of terror involved in finding improvement and given the remit/relpase history there's no guarantee. Our doctor believes there would not be relapses if we could afford IVig every 2-3 months.

pandasphilly- would you mind if I reach out to you this weekend about the program. I would understand if not a good time. We are possibly considering an in-patient stay here.Sure. I am available Friday and Sunday. Hope youre doing well!

My cousin enrolled her daughter in Bradley for anxiety but it is a shorter and less intensive program. She seemed to make a small amount of progress

While I can't speak to Bradley, I will tell you my son is currently at Rogers Memorial Hospital in Wisconsin for OCD/anxiety and 15lb weight loss due to food issues. Many of the kids here have your daughters concerns as it is quite common here. They also have a nutritionist on staff. We have also been to Rothman at USF (whom is partnering with Rogers). It is excellent, but given the severity of your daughters condition, i believe Rogers is better equipped to handle her situation, including a hospital for care. I can't say enough good things about my sons success here, but he's also very experienced with ERP which prepard him well. Pm me if you would like more info.

Thank you Julia faith. I have a number of questions and will pm you tonight

Thanks for the reply sf mom.

From my understanding Hansa Center does not do blood draws/analysis, nor do they prescribe antibiotics or medication (Which one hopes is not needed). However with that said I know of an Integrative physician who has taken her children there and recommends it. I would presume she had run all necessary bloodwork before arriving. I am attaching the link to the Praxis private clinic in Baad, Germany. You can see their approach by clicking on the many link options. It's quite interesting. I am considering these options. Please feel free to share any insight. http://milz-bieber.de/englisch/index_english.html

I would like to know if anyone has tried or been able to secure an appointment with Dietrich himself rather than one of his certified ART practitioners? Also has anyone been to his clinic in Seattle?

Tamistwins can you PM me the name of the mom you spoke with? I'm am considering this for my son.

I too am interested in finding a mom who's used Hansa center. One thing I find interesting about their staff is that not one provider is a medical doctor. However I understand that you do not need to be one to practice kinesiology and German biologics of which you can achieve good results. There is another clinic in Germany that offers similar but more comprehensive treatment.

I am going also!

My son had lice the year he got really sick. I sometimes wondered if they contributed to his illness in any way. I even brought it up to his doctor last week and it's 2.5 years later, that's how much i recall making the association. I say this only so you can watch your child for any symptom exacerbation or changes. I used RID shampoo as i didn't know much then. I believe its a pesticide and pretty toxic. Now I wonder if it added to his toxic load given he has a genetic detox issue. There are much more natural ways to treat lice so they are worth looking into. Fairytale shampoo is a non-toxic and pesticide free treatment. I actually worked hair by hair for hours in the sunlight with reading glasses on to remove every nit (there were over a hundred and they were a bit hard to see). I did this for a few days because I would always find more. It was helpful he had somewhat short hair. The biggest problem is that the carriers parents never treated the lice properly and it went around the class for the entire year and some of the next. Perhaps it was in the home.

I believe the best doctor to help your symptoms would be someone in integrative/functional medicine. I just learned that chronic sore throat is a classic sign of Lyme and coinfections (even along with intermittent positive strep results, when strep would leave we'd still have sore throat as our primary symptom) When I had Lyme I had a fatigue that was indescribable so I understand your year of 2009. Even lifting my arm to brush my hair became impossible. I felt as if my limbs weighed a thousand pounds. I would need more detail on the urinary issues but there is a common link between folinic acid & b12 deficiency causing urinary problems. This can be easily identified with particular blood tests and if that is the case the urinary issues often resolve immediately with treatment. PM me if you would like more information on this.

My pandas child always states that immunolox irritates his throat or makes it feel like sore throat. Then he starts with the throat clearing. My non pandas and I tried it and and feel no side effects but we haven't used it long enough to gauge the results or benefits of immunity.

I learned so much also. I was especially surprised to learn of urinary & neurological issues, ocd, anxiety etc that certainly qualified as symptoms of pandas. Also that Bloodwork may hide the B vitamin deficiency if you have a methylation trapping issue which we do. Our doctor knew how to test properly but the book helped me understand that as well. That's why i figured perhaps the mb12 injections would relieve some of our symptoms and now I can see what's left that still needs treatment. Thankfully my son was an MB12 responder and its helped a lot.