ssfkat Posted February 16, 2015 Report Share Posted February 16, 2015 We have done the bloodwork, and are waiting for the dr. consult. We were given 2 different abx, as well as a Valtrex to take in the interim, but none of them seemed to do any good, at least for the 30 days each abx was taken. However, ibuprofen works. 90% of the time, a dose calms her down, to the point where when she is flaring badly, we make a beeline for the bottle. I get that it reduces inflammation. Does the infection in the brain cause the inflammation, or could theoretically anything cause inflammation in the brain -- like an infection or a virus. Or let's say she tests negative for these major causes -- in that case, why would the ibuprofen work? What I'm getting at (I think) is: what EXACTLY does it tell me that the ibuprofen helps her behavior? Is it possible that it simply makes her feel better overall and has nothing to do with the brain? Link to comment Share on other sites More sharing options...
Mayzoo Posted February 16, 2015 Report Share Posted February 16, 2015 (edited) The general, simplistically explanation, as best as I can state it, is this: 1. Infection causes antibody production. 2. Antibodies that are supposed to attack the infection instead attack the basal ganglia in the brain. 3. That attack causes the inflammation of the basal ganglia. 4. When the basal ganglia becomes inflamed, we see a myriad of symptoms that we call a flare. Mitigate the inflammation in the basal ganglia and you mitigate the flare symptoms. In most cases, as far as I am aware. there is not really an infection in the brain. The ibuprofen working, even if the tests up to now are negative, simply means you have not run the right test yet IMO (have not found the infection). Edited February 16, 2015 by mayzoo pr40 and MaryAW 2 Link to comment Share on other sites More sharing options...
fuelforall Posted February 16, 2015 Report Share Posted February 16, 2015 Dr T has made a case for the hypothalamus, not the basal ganglia. Given my son's sensory oCD right now, I tend to agree. Link to comment Share on other sites More sharing options...
ssfkat Posted February 17, 2015 Author Report Share Posted February 17, 2015 Sensory issues were the first things that showed themselves. Literally overnight, one day she woke up and did not want to wear any clothes. Everything made her scream. We were housebound with her in the bare mininum clothes for those first few days. The sensory things have morphed and mutated over the years, but they are always, always there... in various forms.....since that day. Link to comment Share on other sites More sharing options...
fuelforall Posted February 17, 2015 Report Share Posted February 17, 2015 ssfkat, what provided relief, since you said "those first few days."? Any particular med, abc, etc? Link to comment Share on other sites More sharing options...
ssfkat Posted February 18, 2015 Author Report Share Posted February 18, 2015 The first few days were basically us being shell-shocked and not knowing what was going on, before we got used to our "new normal". After about 3 days of that, we finally corralled her enough to get some clothes on her and put her in the car seat to get her to the ped. She was spewing every vile thing she could imagine at us the whole time. Totally not our child. We asked for a strep test and it came back negative. The ped wasn't very supportive anyway, and called PANDAS "controversial". He suggested zoloft (she was 3yo at the time) and I refused. Then he suggested that she was "testing" us and it was a discipline issue. Blah. The only two things that have ever provided any relief were the Feingold Diet, and Brainchild Nutritionals supplements. Even those only provide temporary relief -- nothing has been consistent. Anyway, we have been at this for 5 years, and have tried every natural route possible. That's why we are turning to traditional medicine now. Link to comment Share on other sites More sharing options...
4Nikki Posted February 20, 2015 Report Share Posted February 20, 2015 From what I've experienced, It's all a guess as to why it works. Most doctor's I've asked just shake thier head, and say we don't know. When you look up how ibprophen works, it say it blocks the production of Prostaglandin. We have also had some success with Beladryl. Beladryl is also a blocker but a histamine blocker. I can tell you we started out giving DD 1000 mg of Ibprophen and it seemed to help curb the rage. But then we found that a 200 mg dosage of Advil Cold and Sinus had more of an affect. It has pseudoephedrine HCl 30mg in it. When we told her neruo, he said it might seem like a contradiction to give stimulant to a raging child but it is prescribed to ADHD children. We tried just the stimulant with out the ibprophen and it had no effect. Lately DD was diagnosed, but not confirmed with Albright and the genetic doc said it can wreak havoc with PMS. Link to comment Share on other sites More sharing options...
PowPow Posted February 20, 2015 Report Share Posted February 20, 2015 What is Albright, 4nikki? Link to comment Share on other sites More sharing options...
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