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qannie47

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Everything posted by qannie47

  1. You can have a peptide test run by great planes. It is reliable. Yes...if you are not digesting casein the undigested food will leach the bacteria into your bloodstream and cause an autoimmune response. Hence the ocd
  2. There is a DNA saliva test by genocept that will tell you what is compatible with you
  3. 1 Pkg Johnsonville Hot Ground Italian Sausage 1/3 lb each: ground Pork & ground beef/ground round (you can also buy a prepackaged meatloaf mix) 1/2 cup ground gluten free oatmeal (great binder/egg replacer) 1 cup ground gluten free Rice Krispy 1 tsp salt handful of parsley (if you have it on hand) 1/2 cup (slightly less) Prego Garden Chunky Style Tomato Sauce Mix the above and drop into salted/boiling water for 10 minutes (soft boil) Transfer to pot with extra sauce and simmer another 15 minutes I love the Prego Garden Chunky sauce & I mix it with Prego Chunky Garden/onion/garlic sauce: 1:1 ratio It does not taste like jarred sauce. Tip: I pull apart all the sausage and ground meets in the bowl to make sure everything is distributed evenly. If you just dump it all in and over mix it will change the texture of the meatballs. Try not to over mix.... Enjoy!
  4. Ck his b12..very common with low b12 levels. Supplement with sublingual to insure proper absorption
  5. Ck his b12..very common with low b12 levels. Supplement with sublingual to insure proper absorption
  6. I had similiar experience with hospital/neurologist. In fact, they called the psych unit during our stay and had me evaluated under the pretence of examining my son. Impressive. Fortunately the psychiatrist was discerning enough to see that I was not a nutjob and that my child was sick... The neurologist was about as cocky as the one you experienced. His works were, "Why don't you take him to talk to someone, see how he feels about things....?". My advice, move on and forget the whole thing happened. Sorry you had to experience that.....
  7. Another thought. Do you give enzymes? Dr. Greenblatt told me that removing allergens is not always enough due to cross contamination..
  8. Another thought. Do you give enzymes? Dr. Greenblatt told me that removing allergens is not always enough due to cross contamination..
  9. Have you run an igg allergy panel recently? The facial flushing and body odor seems important...
  10. Was there ever a time when you had no concerns about your son? For example, when my doc and i timelined it..we found the strep/quirky behavior going back to age 2. The big storm hit age 6... Yes...strep could have been hiding for years with no symptoms...that indeed happened with mine and no symptoms. 6wks of abx wiped out the last of strep when dx and bingo...years of rls went away like magic. It could be pans or one of the other dxs your son got or even a mixture..time will tell. Most important is that cking out pans is important because so much has been learned and the ripple effect from the theory has altered old school mindsets. Point is even if not pans traveling down this road will most likely result in some ahas and help your son in some way...
  11. I would not hesitate to call John Hopkin's. Sorry to hear that things have been so rough....
  12. Thanks Pr! I was most amazed at the similarities of the cases to my ds. He is still doing great, btw...the new diet and supplements really seem to have helped. My thoughts are that his past "popcorn" flares most likely were the result of the inflammation caused by his digestive issues. Hence, I think for my ds, Pandas and his digestive issues had a very cause/effect relationship.....So I will never know if the 2nd IVIG was needed, but at this point, I don't really need to know as long as he is healthy.
  13. I ditto everyone's thought that you should not ignore this. Even if it is not Pandas, there is something amiss. Remember, research has revealed that their is a high prevalence of OCD in Pandas children and their families in general. So, while this may not bloom into all out Pandas, you still have to consider some OCD here, and have it evaluated. If it is Pandas, the quicker it is treated I would have to assume, the faster the healing. My husband fought me every inch of the way with my twin boys. One Pandas/One Other dx. It was not easy having the extra stress, but insisted and followed my gut no matter how much eye rolling I observed. I will tell you, now that both kids are doing better than great, He will be the first one to say how thankful he is that I did what I had to do.....so, push on. If it turns out to be nothing...well, isn't that the best scenerio? That is the way I approached it. Let everyone laugh behind my back, but as far as my son's went, going with my gut allowed me to sleep better. Sending warm thoughts.....
  14. Every time I visit this forum I have to keep signing in again. I dont remember this being a problem in the past. Is anybody experiencing this?
  15. I heard rubbing alcobol can kill strep. 15 sec immersion
  16. Hello. My first question, did your doctor provide you with 1 dose of Prednisone to counter the headache that can follow the IVIG within the first 24 hours? It was explained to me that inflammation can result to cause that headache so the Prednisone can knock out the inflammation/headache...which leads me to wonder if it was not administered, this is why you are seeing regression instead of improvement? Just my thoughts... My son has had 2 IVIG's, and the headache came with it....the first time I gave him the Prednisone immediately and the headache was knocked out instantly and never returned. The second time, it took me 12 hours to get hte script filled and the headache diminished, but hung around for about 4 days as well. I don mean to focus on the headache, as I know that is not your primary question. However, I will say, that my son took longer to respond in a positive way the second time around, and after reading your post, I have to wonder if the brain inflammation/headache allowed to take root could interrupt the positive effects of IVIG temporarily. My take on IVIG: I know that they say that IVIG has a 3 month shelf life...however, I believe that it is "Big Picture", the belief that many specialists, including Sweedo, feel that it can take up to 18 months for the real, beneficial effects of IVIG in that it can fix a "misguided immune system" is what is important. I want to add, that our experience has been that IVIG is only a piece of the puzzle. Pandas/leaky gut/vitamin & mineral deficeincies/food allergies were the other components that needed to be addressed. Once we covered all the bases, our son has never been in better shape. Hope this helps...
  17. I recall Sheila Rogers posting something about a new patch? that can help stuttering? The company will send you a trial set of free ones to try.....I believe it was posted about 6 wks ago...Glad to hear the good news!!!
  18. I would change abx. Plus, it can take several weeks to see a reduction of symptoms. We have always used amox/clave.
  19. How about miralax? When we did not know that milk was causing major constipation for my ds when he waa 3, our doc reccomended it. It works by maintaining more moisture in the intestines...no laxatives...it worked great for my ds with zero side effects
  20. IBEE We used a hair test for Lithium and for Vit C. SEARCHING: You are very correct that one needs the other... Dr. Greenblatt explained this. Zinc is important as well. Pure Ecaps has 2 products. We use the Liquid Lithium (just checked the bottle and order sheet). NOT the orotate.... MICHELLEB The company is called Trace elements. Cost $50. They are out of Texas DS still going great! When I say great, I mean no popcorn moments either. Consistent all day long. I keep looking at him, waiting for something to change....that old PTSD....
  21. Sounds similiar to my ds in his worst moments. The current track im on leads me to notice that your ds was a soy baby, had acid reflux. Not familiar with feingold diet and noticed milk in his current diet. Milk intolerance can cause a kid to act in the ways you describe..and leaky gut which leads to many def that will derail the central nervous system..zinc, b vit, copper, ability to absrob lithium..it goes on and on. While pandas could be at play here..i have recently come into a healthy respect with regard to diet..
  22. Ibee: hair test. Searching: correct, they are related..also see Zinc. Its pure encapsulations Liquid Lithium..i assumed it was ortate
  23. 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
  24. Pr40. Greenblatt was pretty explicit that a quality enzyme be used. Because of cross contamination. I use Gluten/Casein by pure encapsulations.
  25. 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.
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