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qannie47

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  1. Maybe PANDAS??

    Your 5 year old sounds very similar to my son whom was dx with Pandas at age 6. I would find a Panda's doctor. Some advice: Do not take him off the abx until he is symptom free of behavioral issues. This could take several weeks. There is a high co morbidity between Pandas and ADHD. My son is doing well for a handful of years now. He does have ADHD. Recently I have decided to put him on Vayarin; an Omega 3 type supplement that is shown to help with emotional control that is typical with ADHD. Even if your son does not have ADHD, I am thinking this could support the anger/rage issues that you are seeing. Hope this helps.
  2. 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.
  3. If active infection..abx important. However, I have come to believe that advil works best due to it's anti-imflammatory properties.
  4. We did many things to help my child with Pandas. ABX, IVIG, supplements...all helped. Figuring out that an autoimmune was also playing a role in flares was in my opinion the last piece of the puzzle. Yes...an auto-immune diet would be very helpful.. Food allergies also can play a big role. Eliminating these can be very helpful but also very difficult to avoid...as their are trace amounts in many foods. We did food allergy treatment and that helped with that...see my other posts.
  5. 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. When my child was diagnosed with PANDAS 4 1/2 years ago, Standford seemed to be one of the only institutions that was studying it in a pretty big way. I would have to assume that they could be several steps ahead of many with understanding this convoluted disorder and treating it. Best of luck!
  7. 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
  8. Here is a link of testimonials.....there are tons http://www.midwestallergyrelief.com/testimonials.htm
  9. The Therapy is called AAT Therapy here is the link Allergy Video for PC <https://www.hightail...CbEFubHk5TE5Vag> AAT Video for Mac <https://www.hightail...CbEF6RTgxWjhUQw> If anybody is unable to view the videos, you can call Midwest Allergy Relief (847) 392-7901 Ask for Beverly, she is Dr. Ian Wahl's wife and office manager. She will resend the video. P.s Technology has advanced in this treatment...instead of applying the broken down components of each elements on the skin during treatment, they apply a cuff that is connected to a computer that sends the components directly into the body during treatment. Weird I know. You have to download before viewing. Boysrlove: The very reason I did this was because my Pandas son on a cleaned up diet would periodically have an off day or 2 nothing big but would disrupt his day. My thoughts were the same as yours; that hidden allergies were causing Panda symptoms. Not major flares, but enough to to claim my attention. Since finishing treatment mid July, he has not had any off days. I truly believe that I was right. In his case it was Food coloring that was one of the hidden culprits. He was also treated for everything that came under their "Mood Panel", so there could have been many other allergens that were tripping him off. I figured if I was going to do this, I would go the whole 9 yards..... It was a total of 25 treatments. His non-Pandas brother had about 16 I think.....
  10. 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....
  11. The online game is called Plants vs Zombies (7 yr olds love it). Ha! The Pandas "take-a-way" for me is that after dealing with that special form of Crazy....it takes a lot to phase me at this point.
  12. Allergies

    This season was a tough allergy season for the entire household. Even my husband was affected, he he never has had issues. My kids have been complaining all summer about sudden headaches, dizzy, stomach/nausea only when driving. You may have seen my recent thread about allergy treatment, but it was for food only, did not treat mold, etc.... My thought are that since seasonal allergies mess with sinus channels it has to effect the inner ear in some way. Which would make sense with the symptoms they report. When the car stops and they are out of the car, the symptoms clear immediately. Food allergies can produce the same issues, since they can cause congestion..... I have my kids do the netti-pod. It works very well. Kids have a tendency not to blow their noses completely and clear out everything. They sniff and sniff, which just backs up those sinus canals, hence, aggravating the inner ear. The netti-pod clears it all out.....twice daily.
  13. I am not sure if I am remembering correctly, but I thought Sheila posted something about 6-9 months ago regarding a new patch that appeared to be very effective with tics..... The company was offering a free trial with the patch?
  14. midwestallergyrelief.com/ You can call Beverly and she will send the video link directly to your email. mama2alex: Yes and No. Some things are straight forward, like food coloring. Others more complicated like Gluten/Wheat : it's a panel of treatments that would include everything that a piece of bread might contain... Once done with a group/Gluten, yes...you can tell if it worked right away. Wisdom: Midwest Allergy Relief Center, Dr. Ian Wahl . Yes, can work for mold. In fact, just asked him about that for myself cause my allergies with mold are terrible. When I save up some money I am going for it. What is amazing to me is my second son, just completed treatment. His biggies were Dairy/Wheat. Horrible stomach ache and constipation once he ate any...then came the mood shifts. No stomach aches, constipation, or mood changes. He has been eating everything all week.... Still shaking my head but converted into a believer.
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