Bill Posted July 26, 2011 Report Posted July 26, 2011 Quick recap of my son, now 13. Temper tantrums for several months when 4 never quite returning to "happy" baseline. Anger more noticeable when 7 plus movement anomalies as year goes on. Anger, violent, severe movement disorder, dilated pupils ... doctors rule out brain tumor, diagnose dystonia. Rule out connection between behavior and movement (huh?) Extremely responsive (within hours) to low dose Zoloft for behavior. Neurologist focus on dystonia. Can not get them to consider anything else. Get on the doctor treadmill (Childrens, Mayo, Hopkins) for 3 more years with symptoms (dystonia) slowly getting worse. Behavior kept in check by Zoloft but we can 'see' upticks there as well. Behavior changes proceed movement disorder increasing.... Two (+) years ago anger returns, dystonia ramps up, and severe OCD hits him quickly. Eyes are almost always dilated. Zoloft stops working at any dose. Start learning about Pandas. Discover low dose Prozac works for behavior after 3 months of ###### in the house. We unceremoniously dump all the doctors we've been seeing. Up till this time (and even now), no sawtooth pattern to symptoms. Every 6 to 18 months, symptoms just get a little worse until the OCD explosion. PEX November 2009 with minimal impact. Some improvement in one foot/ankle. Some improvement to eyes. At three months out even that is gone. Math abilities start a vacation. Still an avid reader. Not sensitive to light or noise - ever. Summer 2010, positive for Lyme and Bartonella. Takes several more months to get treatment plan underway (end of September 2010). Also diagnosed with CVIDs (common variable immune disorder). MRI detects 3 small lesions on brain (August). More evidence suggesting that Lyme has been there for a while.... No herxing. No drastic symptom changes ever. Everything is slow. That's not to say there aren't changes day to day or week to week, but nothing significant. 'Detox' as suggested on these forums do not seem to make any difference. If anything, just annoy him. Some improvements again to foot/ankle over Fall/Winter/Spring but seem to stall by Spring. Tics slowly disappeared last Spring though we occasionally see them. His eyes have slowly returned to normal! Earned a D in math the second quarter but B's in 3rd and fourth. OCD has been ever so slowly improving but still stuck with bathroom routines. Dystonia remains as bad as ever (but no worse)...........so........ That brings us to first IVIG in June, one month ago. Procedure was a little rough for him as he vomited after the end of day 2 through the next morning. Slight headache as well. After it ended though, no further symptoms. The one thing we can positively say has changed has been behavior. He has been doing good anyway but immediately after IVIG we have consistently been rating him 'happy' every single day. His OCD is diminishing but it is difficult to say if this is because of the IVIG as he was on a positive trend anyway. It does 'feel' like improvement has speeded up a little though. Psychiatrist agreed that we should try lowering dose for Prozac. If that goes well then I would be more inclined to believe that the IVIG is playing a positive part. So - too early to tell really. At least no negative backlash. Main purpose for even posting is to provide data for others who do not personally, or have children who do not share the up/down symptoms that many on this forum do or react strongly to medication, detox, illness in home, etc. But - he is diagnosed with PANDAS, neurological lyme, CVIDS, and Bartonella. Just shows how very different everyone reacts. FYI only, below is his current medicine and supplement routine. (Do not go by anything we are doing, talk to your doctor!) He weighs low 90's after gaining 20 lbs since last October! One last note, he takes little in the way of probiotics. We settled on the 1 a day plus the SB every other day as that keeps his bowel movements where they should be. Any more and he gets constipated. Less and it gets watery. I just started the K2 within the last week after following some links posted on this forum. For the most part though, we've no idea what if any of the below - especially supplements - are doing. There may come a day when I simply start stopping stuff and see what happens. But, I've carefully selected stuff that should do him good especially with his neurological symptoms and should not be harmful even if not helpful. Also please note that the below especially the ABX have changed some over the last 10 months; this is just a snapshot of today. We have more consultations in August so I feel sure we will change something(s) then. bill Prozac 30mg daily (will drop to 20mg tomorrow) Augmentin 1000mg XR X 2 daily Minocycline 50mg X 2 daily Azithromycin 250mg X 2 daily Tindamax 500mg tablet Fri pm, Sat am + pm, Sun am only Vitamin K2 3 X90mcg; Jarrow MK-7 from Natto extract Methyl B-12 2mg daily L-Methylfolate 2000 mcg daily Vitamin D 2,000 IU daily Coenzyme Q-10 200mg day X2 daily Vitamin C 500mg daily X2 daily Magnesium 84mg Mag-Tab SR X 2 daily CholestePure X 2 daily (phytosterol complex - 450mg) Probiotic CP-1 1 daily (Acidophilus + Bifidus, 50B Saccharomyces Boulardii + MOS 5B/capsule X 1 daily (Probiotics vary depending on bowel movements) ps - all of the above is greatly simplified in detail. I may have to update as it's likely that I've forgotten a really important detail but otherwise it's a good overview.
Resteragu Posted July 27, 2011 Report Posted July 27, 2011 I agree, it does sound a bit like a 'quick fix' solution.Surely you can never be 100% absolutely certain that something won't go wrong.
Bill Posted July 27, 2011 Author Report Posted July 27, 2011 (edited) Have you had the Cunningham Test done when it was available? Yes. His CamKinase II was 126. The only other score worth noting was his anti-Lysoganglioside score of 320 (normal range 80-320, mean - 147). Dr. B specifically pointed to this anti-Lysoganglioside score when discussing his immune disorder. He believes that the IVIG will "retrain" "calm down" "interfere" with current activity (if I've not screwed up what he told me already.) We had the Cunningham study long before we discovered Lyme so I updated Dr. C. just in case it would be helpful to her study. She is an extraordinary person - responding the same day, a Sunday no less - who in part replied. "...His CaM score is so low that I suspect that the disease manifestations were primarily due to the infection alone and not as much to autoimmune responses..." I do not have the background to fully appreciate her response. I do hope that her studies continue or at the least someone picks up her work. bill Thought I should add really quick - Dr. Cunningham is a research scientist and responded as such. At no time did she offer medical advice beyond that of her research opinion. I would love it if she did but wanted to make that clear! Edited July 27, 2011 by Bill
sf_mom Posted July 28, 2011 Report Posted July 28, 2011 Bill, I've been waiting for an update and just thrilled to hear the news. CONGRATULATIONS!!!!! -Wendy
Bill Posted July 28, 2011 Author Report Posted July 28, 2011 I don't know what to say. Maybe the dystonia is completely unrelated since it's not responding to anything? When I was sick my cam kinase was 140 but I was functioning perfectly fine, no one would know I had PANDAS. Well - the dystonia did initially respond to augmentin and azithromycin combination. We had a couple of ABX changes early on but every time we dropped one or the other, dystonia got worse. When on both at the same time, got a little better. Unfortunately, progress stopped last winter. I do not want to jinx my son - but - doctor believes that IVIG will correct the dystonia. The doctor was not saying this 10 months ago. Dystonia was one of his first symptoms - years before we realized it really - so it may just be one of those last to go type things. My real fear is damage has been done but....
Bill Posted July 28, 2011 Author Report Posted July 28, 2011 Bill, I've been waiting for an update and just thrilled to hear the news. CONGRATULATIONS!!!!! -Wendy Thanks! Just finishing up day two of reduced prozac and so far - not seeing anything. Usually by the end of the second day we'd be seeing behavioral changes so even if we have to go back up, it feels like a win just to make it two days. bill
philamom Posted July 28, 2011 Report Posted July 28, 2011 Bill, I've been waiting for an update and just thrilled to hear the news. CONGRATULATIONS!!!!! -Wendy Thanks! Just finishing up day two of reduced prozac and so far - not seeing anything. Usually by the end of the second day we'd be seeing behavioral changes so even if we have to go back up, it feels like a win just to make it two days. bill That's excellent Bill! Thank you for the update and praying for continued progress.
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