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Posts posted by qannie47

  1. 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. 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.

  4. 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. 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,



  6. The Therapy is called AAT Therapy


    here is the link Allergy Video for PC

    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.....

  7. 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....

  8. 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.

  9. 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.

  10. 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.

  11. Wombat: They do an initial testing. They seem to test for everything under the sun. It was a total leap of faith because of A) How they administer the test, B)How many sensitivities seem to come up for everyone: they claim they can tell if it is IGG or IEG... C)How they treat, which is thru acupressure while simultaneously sending the signals (the allergen) thru what looks like a blood pressure cuff to reverse the bodies reactions...


    To some degree you can pick what you treat...however, there are a lot of things that bleed into each other so you have to treat a whole spectrum of things...


    Food Coloring, being that it is a known mood antagonist, we decided to treat... For my Pandas DS, I explained that there seemed to be some mood triggers that I could not put my finger on, so we did everything that came up under their "Mood Panel".


    His brother, non-pandas, is smooth sailing 100% consistently as long as he does not eat gluten, dairy and egg. So for him, (just started treatment), the treatment will not be so involved.


    It will be interesting to see if it helps him as well.


    Again, while it appears that it seems to have worked for Pandas DS, I really have to see how he looks in to "big picture" with school starting, for example....Jury not completely in yet.....

  12. 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. Well, we have been to the "witch" doctor and ds has finished the dairy portion of this very involved treatment. I have tentatively allowed him to eat a Hershey's bar, a 1/2 cup of ice cream, and a small amount of cheese.


    Ds typically reacts within hours of eating small amounts of dairy. I have waited 3 days between each exposure to see if he would react. No reaction. None.


    He will be treated for egg, gluten and food coloring soon.


    Really still can't wrap my brain around this....but moving forward.

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