qannie47 Posted July 20, 2015 Report Share Posted July 20, 2015 Thought I would share some info about some discoveries we made with regard to my Pandas DS recently. I decided to take him to the doc whom treated his twin/non/Pandas for mood/anger issues. (twin 100% symptom free 12 months and holding) Ds had a 2nd IVIG last March and we did not experience the same positive outcome as with the first one. Thinking that co-morbid issues could be in play, I wanted a second opinion. We flew to Boston, and saw Dr. Greenblatt. He is amazing. Results: 0 traceable lithium 0 Vitamin C Low levels B12 Low Zinc Low White blood cell count Low CaL/Mag High Sodium Low Serotontin levels indicated Yeast Fine (interesting cause I have been remiss on pro-biotics for a year now) High Dairy Intolerance issues Dr. Greenblatts Interpretation: All of the above deficiencies are interlinked and dependent upon one another so a domino effect is at play. Dairy issues part of the root cause>Undigested bacteria leaching into blood stream> antibodies making their way to Opiate Receptors in the Brain and causing Moon Lability/Anger/Aggression>diminishing absorptions of vit/minerals. 0 Lithium of course would be a player with same mood issues. Low White Blood cell count is probably the result of the low Zinc, which is needed to create white blood cells. High Sodium is linked to Zinc as well. Mood issues is a given with B12 deficiencies. All of the above are required for proper methlylation of Serotonin> either the mfg or the transporting to the brain. He has seen similar profiles with Pandas kids. He feels that above issues are a combination of Genetcs/Pandas> the Genetics exacerbating the Pandas. He is very optimistic about treating him, stating that he has had very high success with kids that have similar to my Ds's Profile. Says that B12/Lithium/Dairy are the biggest players here....Supplementing could yield benefits within a couple of days. I dare say......the child has not had a Tantrum since staring supplements. Will report outcome Link to comment Share on other sites More sharing options...
qannie47 Posted July 21, 2015 Author Report Share Posted July 21, 2015 5 days no tantrums. Calm and happy. Dont want to jinx it but doc said if its going to work we would see results in a day or two. lovemylittleguy, tj21 and MomWithOCDSon 3 Link to comment Share on other sites More sharing options...
tj21 Posted July 21, 2015 Report Share Posted July 21, 2015 No jinxing here!Cooincidentally I just saw ds15's PANS NP/RN and she wants to test for Zinc, Iron, Folate, and some other minerals. White blood cells are good. But his protein levels are very low and she connected the dots for me re. low IgG (protein!!) and the need for protein from meat sources (we eat very little red). So, ds15 will be thrilled to eat more hamburgers and steak tacos. We've found that Country Life's Complex B formula is good and no flushing reactions (B-3??). ds15's igG is still low after March IVIG so we're due for a 2nd in Dec. Link to comment Share on other sites More sharing options...
qannie47 Posted August 11, 2015 Author Report Share Posted August 11, 2015 Looking good folks...looking good! No anger. No opposition. Calm. Emotionally Regulated. Happy...the child is happy. It feels right too...if that makes any sense.? pr40, awilliams74 and MomWithOCDSon 3 Link to comment Share on other sites More sharing options...
pr40 Posted August 11, 2015 Report Share Posted August 11, 2015 so happy for you. can you tell us what he is taking now and how much? thanks! Link to comment Share on other sites More sharing options...
mmiglio Posted August 11, 2015 Report Share Posted August 11, 2015 Thought I would share some info about some discoveries we made with regard to my Pandas DS recently. I decided to take him to the doc whom treated his twin/non/Pandas for mood/anger issues. (twin 100% symptom free 12 months and holding) Ds had a 2nd IVIG last March and we did not experience the same positive outcome as with the first one. Thinking that co-morbid issues could be in play, I wanted a second opinion. We flew to Boston, and saw Dr. Greenblatt. He is amazing Can I ask how long it took to get an appointment with Dr. Greenblatt and how much it cost? Link to comment Share on other sites More sharing options...
qannie47 Posted August 15, 2015 Author Report Share Posted August 15, 2015 He is on 5000 b12 w/folate (sublingual) 2 droppers lithium ortate (from pure encapsulation) Vit c Trace mineral (pure encapaulations) Cal/mag 2 gluten/casein enzymes w/each meal Gluten/dairy/egg free diet No wait for apt at this time .i have referred others and they have gotten right in. Link to comment Share on other sites More sharing options...
pr40 Posted August 15, 2015 Report Share Posted August 15, 2015 thanks for the answer. one more question, if you don't mind. which gluten/casein enzymes are you using? thanks again Link to comment Share on other sites More sharing options...
jtp Posted August 17, 2015 Report Share Posted August 17, 2015 qannie47 Hi sent you a PM Link to comment Share on other sites More sharing options...
WorriedDADNMOM Posted August 17, 2015 Report Share Posted August 17, 2015 Yeah, but, but ,but..........all these doc's treating naturally are a bunch of quacks!!!!!!! Major sarcasm. Glad to hear there are others treating this way with success. Makes more all the more glad I went with my gut for this mode of treatment as opposed to......Take an SSRI and call me in the morning. Link to comment Share on other sites More sharing options...
qannie47 Posted August 17, 2015 Author Report Share Posted August 17, 2015 Pr40. Greenblatt was pretty explicit that a quality enzyme be used. Because of cross contamination. I use Gluten/Casein by pure encapsulations. Link to comment Share on other sites More sharing options...
qannie47 Posted August 17, 2015 Author Report Share Posted August 17, 2015 I forgot to share my ds flunked an adp test last march. Earned a right brain adp disorder. I had him retested today. HE PASSED and is now in normal range!!! I cried..good tears. We used the FASTFORWARD program for 3 months. The doc also noted the distinct change in affect! She said..no flailing arms and legs, focused and all business. She said it must be combo of program/diet/supplements! Wooooohoooo MomWithOCDSon 1 Link to comment Share on other sites More sharing options...
WorriedDADNMOM Posted August 18, 2015 Report Share Posted August 18, 2015 Amazing that giving kiddos what their bodies need has such a dramatic effect on behavior, focus, temperament......Truly and amazingly phenomenal. Congrats and keep at it!!!!! Link to comment Share on other sites More sharing options...
lbee Posted August 19, 2015 Report Share Posted August 19, 2015 Thought I would share some info about some discoveries we made with regard to my Pandas DS recently. I decided to take him to the doc whom treated his twin/non/Pandas for mood/anger issues. (twin 100% symptom free 12 months and holding) Ds had a 2nd IVIG last March and we did not experience the same positive outcome as with the first one. Thinking that co-morbid issues could be in play, I wanted a second opinion. We flew to Boston, and saw Dr. Greenblatt. He is amazing. Results: 0 traceable lithium 0 Vitamin C Low levels B12 Low Zinc Low White blood cell count Low CaL/Mag High Sodium Low Serotontin levels indicated Yeast Fine (interesting cause I have been remiss on pro-biotics for a year now) High Dairy Intolerance issues Dr. Greenblatts Interpretation: All of the above deficiencies are interlinked and dependent upon one another so a domino effect is at play. Dairy issues part of the root cause>Undigested bacteria leaching into blood stream> antibodies making their way to Opiate Receptors in the Brain and causing Moon Lability/Anger/Aggression>diminishing absorptions of vit/minerals. 0 Lithium of course would be a player with same mood issues. Low White Blood cell count is probably the result of the low Zinc, which is needed to create white blood cells. High Sodium is linked to Zinc as well. Mood issues is a given with B12 deficiencies. All of the above are required for proper methlylation of Serotonin> either the mfg or the transporting to the brain. He has seen similar profiles with Pandas kids. He feels that above issues are a combination of Genetcs/Pandas> the Genetics exacerbating the Pandas. He is very optimistic about treating him, stating that he has had very high success with kids that have similar to my Ds's Profile. Says that B12/Lithium/Dairy are the biggest players here....Supplementing could yield benefits within a couple of days. I dare say......the child has not had a Tantrum since staring supplements. Will report outcome May I ask how he tested for your above deficiencies? I'm particularly interested in how he tested for the lithium and vitamin C? My Dd's lithium was zero on her hair analysis and her vitamin C was next to nothing on her OAT. Link to comment Share on other sites More sharing options...
searching_for_help Posted August 19, 2015 Report Share Posted August 19, 2015 Fascinating. My kids have very similar test results, except my kids test high in B12 due to supplementation. From what I've been reading, if lithium levels are low, the B12 can't make it into the cells, and both my kids were zip/zilch/nada in lithium on a hair analysis. The only Pure Encapsulations liquid lithium I can find is Lithium Citrate. (I went to the Pure Encapsulations site.) Did you mean New Beginnings liquid lithium orotate, or Pure Encapsulations liquid lithium citrate? Thanks! Link to comment Share on other sites More sharing options...
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