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qannie47

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  1. Like
    qannie47 got a reaction from tu4four in It's been awhile, so I thought I would update   
    Months ago I shared that food allergy treatment was our final piece to the puzzle in getting rid of symptoms that seemed to have no explanation. It seems to have held as well. Last October though, my perfectly healthy 100% free Pandas child of many months flared from a tetanus immunization shot. A flare could not have been further from my mind, and I did not even recognize it right away. We started ABX (an increase from his prophylactic dose) without any great results. I started advil 2x a day and that did the trick. For the most part he has been back to 100% again with very minimal wax/waning. He came down with a cold 5 days ago and sure enough....there were the symptoms...I was smart enough to start the advil 2x a day and this approach seems to have nipped it in the bud and also prevented further escalation of symptoms. I still believe that the October flare still has a little hold on him. An off day/half day here and there. Thinking that those dam antibodies will just need some time to completely leave his brain....Otherwise he is in good shape and holding.
  2. Like
    qannie47 reacted to Gpookie in Could HPV virus be a trigger to PANS/Pandas symptoms?   
    Anything that affects the immune system can trigger PANS symtpoms.
  3. Like
    qannie47 got a reaction from marmcglynn in Advice. Strong suspicion of PANDAS/PANS in our 7 year old   
    Hmmm. I don't find myself saying this often, but your case sounds about as straight forward a case of Pandas as it can get. If I remember correctly, ear infections can be caused by strep bacteria. I do not think this most recent set of symptoms that started in september is the first episode either. Dr. K theorizes that Pandas is a slow building storm, with minor clues that don't catch a parents radar (like the 3 week hand washing episode..but then it goes away). Think back to any weird quirky behavior, that was Atypical, maybe lasted even only a few days, but then went away. Dr. K's research shows that there often seems to be that BIG Explosive episode right around ages 5-7. Also, once the first Dominoe is tipped over with Pandas, you do not have to have strep to trip off future flares...because the Immune System is now broken somewhat and is producing "misguided" antibodies whenever it is turned on.
  4. Like
    qannie47 got a reaction from Gpookie in Advice. Strong suspicion of PANDAS/PANS in our 7 year old   
    Hmmm. I don't find myself saying this often, but your case sounds about as straight forward a case of Pandas as it can get. If I remember correctly, ear infections can be caused by strep bacteria. I do not think this most recent set of symptoms that started in september is the first episode either. Dr. K theorizes that Pandas is a slow building storm, with minor clues that don't catch a parents radar (like the 3 week hand washing episode..but then it goes away). Think back to any weird quirky behavior, that was Atypical, maybe lasted even only a few days, but then went away. Dr. K's research shows that there often seems to be that BIG Explosive episode right around ages 5-7. Also, once the first Dominoe is tipped over with Pandas, you do not have to have strep to trip off future flares...because the Immune System is now broken somewhat and is producing "misguided" antibodies whenever it is turned on.
  5. Like
    qannie47 got a reaction from Jennyjumpup in Advice. Strong suspicion of PANDAS/PANS in our 7 year old   
    Hmmm. I don't find myself saying this often, but your case sounds about as straight forward a case of Pandas as it can get. If I remember correctly, ear infections can be caused by strep bacteria. I do not think this most recent set of symptoms that started in september is the first episode either. Dr. K theorizes that Pandas is a slow building storm, with minor clues that don't catch a parents radar (like the 3 week hand washing episode..but then it goes away). Think back to any weird quirky behavior, that was Atypical, maybe lasted even only a few days, but then went away. Dr. K's research shows that there often seems to be that BIG Explosive episode right around ages 5-7. Also, once the first Dominoe is tipped over with Pandas, you do not have to have strep to trip off future flares...because the Immune System is now broken somewhat and is producing "misguided" antibodies whenever it is turned on.
  6. Like
    qannie47 got a reaction from MomWithOCDSon in a message of hope   
    Thank you so much for sharing. It encapsulates the journey of so many on this forum. What I love best is your message that reminds us parents to embrace the better moments....and Acceptance. What has kept me most sane and hopeful is the knowledge that most people carry a cross of some kind. We are not unique. I draw strength from that.
     
    Continued Blessings,
     
    Q
  7. Like
    qannie47 reacted to 4Nikki in Wondering if anybody has any experience with this....   
    Something to keep in mind about diet is that there are thresholsholds, sensivity, exacerbatiins, all have various affects. Example: We can easily think that a item/product is a cause but it may be that it's a combination produces a trigger when an illness present and no trigger when the illness is not present. Process of elimination typically is not complex enough to determine what is good or bad. It's hard to understand balance with measurement and in many cases what to measure. DD at her onset reacted to sugar because she sick at the time and sugar e, but we all know that exacerbated her rages. But we all know that sugar is needed by the body and that too much sugar becomes toxic. Point being sugar is not bad but too much sugar is bad and not enough sugar is bad. Just some thoughts.
  8. Like
    qannie47 got a reaction from Rdw in Wondering if anybody has any experience with this....   
    I think the dam Voodoo worked.
  9. Like
    qannie47 got a reaction from jan251 in Wondering if anybody has any experience with this....   
    Update: My Pandas DS has so far made it thru the first 5 weeks of school with absolutely zero Pandas symptoms. A FIRST. Since ds has been lucky to have responded to past IVIG's (2) and has done well, my hopes were that the hidden antagonists (not quite full blown flares, but more like minor bumps in the road that lasted anywhere from a couple of hours to maybe 2-3 days), was the food/inflammation.
     
    I am now convinced that the food allergies were the culprit.
     
    He has received perfect behavior scores at school for 5 weeks straight. His ability to self regulate for very age appropriate/typical 5th grade behaviors is nothing short of miraculous. Teacher reports NO mood shifts at all.....
     
    Just wanted to share. I hope that our experience can help others....
  10. Like
    qannie47 got a reaction from Plum99 in Documentary: My Child Is Not Crazy   
    Just came across this documentary that seems to be in the process of being made. Shocked that I was not aware of it. Anybody have any info as far as when it will be released?
  11. Like
    qannie47 got a reaction from Gpookie in Can a Pandas or Pans episode cause permanent regression?   
    I don't know if this will be helpful, but I came to a point where while I knew that my ds had Pandas, I realized that there were co-morbid issues. I separated out those issues as best I could and treated those individually. For example, for my son food sensitivities played a big role for behaviors that seemed inconsistent with fitting into a neat tidy box Pandas presentation. Another example was the Right Brain Auditory Processing Disorder that we uncovered after more digging. There were other co-morbid things as well.
     
    AS I learned, what I came to believe for my son was that no one DX could explain or solve all my son's issues. However, they all were interwoven into my own child's unique fabric, playing there own roles, yet connected and exacerbating each other...including Pandas.
     
    I found that when each problem was addressed singularly, everything got better as a whole.
  12. Like
    qannie47 got a reaction from rowingmom in Wondering if anybody has any experience with this....   
    Since treatment, DS has been eating Dairy, Egg, Gluten. No Reactions.
     
    Here was my big Ah Ha.... He came up with food coloring sensitivities. Yellow 5 and B1 (not red 40 ). After treatment for the food dyes, DS went to another level of calm. So calm now for about 3 weeks now that I don't even want to believe it.
     
    DS has been doing great for 2 years now, but with odd little bumps in the road of hyper/moody/anger moments that would last maybe a 1/2 day or at best a week (rare). Even on the clean diet. I think the missing link was the sensitivity to food coloring. I have never seen him smoother.
     
    Still cant wrap my brain around this...but started twin brother for dairy, egg, gluten treatment.
     
    MY friend, whom is a doctor, and serious cat allergies (loves her 2 cats), is going to try it. Will keep you posted. These are IEG reactions. It is supposed to work for that too.....
  13. Like
    qannie47 got a reaction from BeeRae22 in Flaring again...thought I was done here   
    Beerae22 I wish I had the magic words. Something that could wash away the dread and heartbreak when we as parents realize once again it is not over. Hope. That is what keeps me going after I have a good cry and pull up the bootstraps AGAIN, as I know you will. I try to tell myself that I have come to terms and have accepted that our Journey will not be truly over with for some time. Yet, when long periods of time go by and I see a happy 100% back to baseline child, I start to believe that it is indeed over for good this time around. Hope. Hope is what makes those period of times when our children are in remission so much more miraculous and Hope is what gets us through when the sky has fallen once again.
     
    Don't forget Hope.
  14. Like
    qannie47 got a reaction from pr40 in nose bleeds   
    PR40...my non-pandas son, was Vit C depleted due to food intolerance issues. He had nosebleeds and his gums bleed until we increased his vit c. (he came up low on vit c on a blood profile). We were not even worried about the gums/nose bleeds ( secondary concern), but pleasantly surprised that both went away when we began supplementing vit c.
     
    your post rung a bell...hope our experience helps....
  15. Like
    qannie47 got a reaction from lmi1973 in lactose intolerance and OCD symptoms   
    You should Always use enzymes despite a clean diet with each meal because of cross contamination
  16. Like
    qannie47 got a reaction from lmi1973 in Can Vitamins really be helping my son this much!? Incredible.   
    I second your post. We had what we thought resudual pandas symptoms or a new flare with healing...so we decided to dig deeper for co morbid issues...
     
    We found it! Vit b12 a multiple trace minerals vit, vit c, cal and mag and some lithium ortate. Wala! Saw my kid that i had not seen in 6 months within days.
     
    Also BIG dairy intolerance played a big role.
     
    He is currently 100%
  17. Like
    qannie47 got a reaction from Sirena in IVIg authorized & scheduled! Any tips and advice?   
    Fill the prednisone script to have on hand. At the first sign of any headache...give it to him. The second time around, I waited 4 hours to fill script after headache appeared, and the headache got too out of control and took days to go away..... The first time, when I administered immediately, it went away instantly and stayed away.
  18. Like
    qannie47 got a reaction from emst in disappointed / pissed by neurologist app't -- what should I have expected?   
    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.....
  19. Like
    qannie47 got a reaction from jan251 in How do you know which came first - the strep infection or the neuropsychiatric disorder   
    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...
  20. Like
    qannie47 got a reaction from searching_for_help in Co-Morbid Discoveries with Pandas DS   
    Ibee: hair test.
     
    Searching: correct, they are related..also see Zinc.
    Its pure encapsulations Liquid Lithium..i assumed it was ortate
  21. Like
    qannie47 got a reaction from MomWithOCDSon in Co-Morbid Discoveries with Pandas DS   
    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
  22. Like
    qannie47 got a reaction from lovemylittleguy in Co-Morbid Discoveries with Pandas DS   
    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.
  23. Like
    qannie47 got a reaction from pr40 in Co-Morbid Discoveries with Pandas DS   
    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.?
  24. Like
    qannie47 got a reaction from awilliams74 in Co-Morbid Discoveries with Pandas DS   
    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.?
  25. Like
    qannie47 got a reaction from MomWithOCDSon in Co-Morbid Discoveries with Pandas DS   
    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.?
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