galien407

Uber is a German word for "super" or "over".. and you're right.. she's saying that the dad is super smart. Here's the background of the word from wikipedia.. http://en.wikipedia.org/wiki/Uber Mary

We did the biofilm protocol for about 9 months. My son's DNASE went down but then shot back up again, so we did IVIG and haven't done biofilm protocol since then. The theory is that the biofilm is a mucus-like substance (like a raw egg white) that surrounds and protects the yeast, bacteria and viruses within, and makes it difficult for any antimicrobial products to penetrate through the coating and kill the bad stuff inside. You take the EDTA, garlic, and enzyme on an empty stomach to attack the biofilm; wait about 30 - 45 min and take the antibiotic to attack the "newly naked" strep bacteria. Then take the pectin fiber supplement an hour after that to grab hold of the strep bacteria, etc., and carry it out of the body. Ideally, this whole process should be done twice per day. We could only fit it in once per day on school days, and twice per day on weekends. Hope this helps... Mary

I'm a newbie here, but I think what is happening is this: PANDAS is a result of antibodies attacking basal ganglia cells, and in some cases the high strep antibody titers are present bc there is a chronic underlying strep infection. So the Saving Sammy approach, if I understand it correctly, is to bombard the underlying infection with massive amts. of antibiotics.... then the strep infection goes away... then the body stops producing huge amts of strep antibodies bc there is no longer an underlying strep infection... then OCD behaviors go away bc the antibody burden is lowered.. etc. I'm not clear on whether or not it is believed that ALL kids with Pandas have an underlying strep infection. To answer your virus question; I know that the some biomedical practitioners in the autism community like to give Valtrex as an antiviral. Maybe that will be another area of PANDAS research and trial and error... giving valtrex to kids who have OCD exacerbations due to viral infection. Not sure if I've got this right or not, just my 2 cents... Mary

Hi! I live in the southwest suburbs.. would love to get together.. we see Dr. K as well. I cannot figure out how to private message you with my phone number, so perhaps you could send me a msg with yours??? thanks! Mary

Thanks so much for your help... I hadn't considered Advil... would I be using that to combat the brain inflammation from the flu antibodies? also, how do I contact Dr. Cunningham and what is the approx. cost of the Camkinase II test? Thanks again!

[Thanks so much for your comment about the children who didn't show improvements during the first weeks of augmentin... that makes me feel better! In the Saving Sammy book, I got the impression that her son showed improvements almost immediately, and I was very disheartened. We live near Chicago and see Dr. K... so we're pretty lucky in that regard. Thanks for pointing out the "My Assistant" feature.. never noticed that before. Mary

Hello... I'm hoping somebody can provide insight into my son's situation. 11 y.o. DNASE 1920 in Jan. so we did 2 day IVIG, dnase dropped to 680, then rose again to 960 so we did a 1 day IVIG in September. behaviors slightly better after January procedure.. less so after Spt. iv.. Started the Saving Sammy dose Oct. 15, at the same time that my son had a fever (flu). His OCD and anxiety are skyrocketing again. (son weighs 75 lbs.; takes 875mg augmentin twice per day.) We've had about 10 neurofeedback sessions which are helping with focus a bit, but ocd/anxiety is off the chart. I'm thinking that the strep antibody burden should be coming down after 2 weeks of strong abx, right? (Although it could be months before his titers reach normal levels, they should at least be coming down, correct?) Could his increase in anxiety, etc., be from the flu antibodies he has created? If so, how long until those nasty antibodies go away? Also, I'm starting to see acronyms that I don't understand.. could somebody tell me where to find descriptions of PEX, CamKinase.. thanks!

MY 11y.o. son had IVIG in January over 2 days with Dr. K. Did one IVIG this month. Started increased augmentin two weeks ago. 875 mg. twice per day; he weighs 75 lbs. His OCD is unchanged. Could that be because the strep is being killed with the augmentin, but the antibodies are still going to live for a while and wreak havoc with the basal ganglia? Any thoughts on when we might see some awesome behaviors? His ASO was 200, and DNASE was 920 (had been 1920.) Mary

Thanks so much for all your help! Looks like the development of new symptoms post-IVIG isn't unusual. Please let me know what happens after your second IVIG, worried dad! We might be doing it again, as well. And I'd also like to hear about your daughter's progress, Pat. Did your kids have the skyhigh DNASE levels? I'm wondering if the larger DNASE titer means a longer recovery time, or indicates the need for more infusions. Are there any such correlations? Mary

We had IVIG in Oct. and had 80% reduction of symptoms. right away. gradually she started having issues again and things escalated quite a bit within the last month or two - most old behaviors are gone (including tics), however she started a new behavior in December where she started asking questions over and over again (usually the same one), and she started yelling out about white spots or dots or lights in her visual field and would hit at them. Thank goodness all of that has almost gone away. She does occasionally during the day ask silly or inappropriate questions, but not to the extent of last month where it was many times in a minute. Focus and attention is definitely not what it was prior to the onset of all symptoms last year. She needs an aid with her in school and academically she is about 1 1/2 to 2 years behind. You still can't have a totally normal conversation with her or read a book to her because she will interrupt constantly by talking about something or asking something that's irrelevant. I think that the changes in behavior have to do with what part of the brain is affected at any point in time - issues involving receptor sites and neurotransmitters, etc. Pat

My 11 y.o. son had two day IVIG in early Jan. We've seen an 80% reduction in separation anxiety and "delusional" anxiety attacks (convinced he had killed someone, that he was going deaf and blind, etc.) Dr. K told us about the "turning back the pages" phenomenon where he would relive some things that he had gone through in the past. Is it normal for the child to develop completely new phobias after IVIG? For ex, anxiety attack bc he thought he had swallowed a hair from our pet bunny, and that this would make his heart stop beating. He is not reliving an old issue, this is totally new. Is that normal? Also, he had terrible focus and attention issues prior to the IVIG, but what little he had is totally gone now. My son may be different from other children in that he has a PDD-NOS diagnosis (autism spectrum) and his DNASE was 1920 for three years prior to IVIG. (FWIW: Dr. K is wondering if he had an early onset of PANDAS that was misdiagnosed as PDD...) Diana told me that months 2 and 3 after IVIG can be a nightmare, just wondering if anybody has had experiences similar to mine. Did anybody else lose attention and focus for a while and get it back? Develop completely new anxieties? Thanks for any reassurance and/or info you can provide! Mary

Hello! We just finished our two day IVIG tx with Dr. K. My son is 11 yo with DNASE of 1920. Diagnosed with PDD-NOS at age 3 (autism spectrum) but Dr. K is wondering if he was misdiagnosed. Thinks my son may have had very early onset PANDAS that was labelled PDD. My son had a severe headache and hours of vomiting after the second infusion. Because my son is a bit older than most, we might not see any OCD reduction for a few weeks or months, but I'm keeping my fingers crossed. Apparently, kids who have very severe vomiting and headache have strong overall symptom reduction.... we'll see! Just thought I'd share in case anybody is in a similar situation and looking for info. I'll post our progress... mary

Ooops!! One more thing for Worried Dad... Did you do Dr. K's protocol for PANDAS with your son? (2 consecutive days of IVIG.) Because of his age or other factors, did he require more than the two initial transfusions? And what kind of results have you seen? Thanks for your help! Mary

Thanks for your encouragement, Worried Dad!! I'm praying for a positive response to the steroid burst so that we can proceed with IVIG.. my son has had this problem for 3 years, and it is time to move on!!! [

Hello.. Newbie here. The initial question in this thread doesn't appear to have been answered.. although I'm still figuring out how to negotiate this site. Anyhow, What have people experienced with the steroid burst? We completed our 5 day burst on Sunday, now on day 7 (Mon).. no response. My son is almost 11 y.o.; DNASE of 1920. Dr. K said he might not respond to steroid burst for 3 weeks. Just looking for the responses of other kids and a little reassurance that we still might see something! Thanks!