qannie47

well said Joybop

Ahhh yes...the wonderful world of Pandas....and it's wonderful waxing/waning. Enough to drive one to drink...ok..guilty. All kidding aside, what you are experiencing is so typical to Pandas. Is it just wax/waning? YES Could this be a short flare? YES Could this be another new flare? YES Do the same things seem to effect mood lability? YES. I am truly not trying to be sarcastic...this is just the maddening thing about this whole disorder. It is so nebulous. Finding ones way thru these murkey waters is not easy. Over time, you WILL start to be more acqainted with your childs own unique pattern. My ds for example usually on a dime begins a flare overnight. I have been able to actually recall time of day..ugh. I have noticed that each flare 4 to date...has gotten a little bigger, more pronounced by way of severity. The worst of his flare lasts about 3-4 weeks. Then I start to see the wax/wane. For my ds, the wax/wane portion lasted about 4 weeks, one step forward 2 steps back, until he fully healed. This gives the linear time from start to finish for this episode about 8 weeks. Right now he is absolutely perfect. (GOD I hope I don't jinx myself). When I analyze all 4 episode, I have found this pattern that I share above. It may not be the same for your child, and the next episode may bring a whole new set of dynamics to the party for my little guy . But think back and see if you can find some pattern that may lend some degree of confidence to the whole situation... At one point, I started keeping a journal to keep things straight. During these stressful times, you will be amazed at what you have forgotten or mis-remembered. Hope this was helpful. I think all of us can relate to how you are feeling right now, Breath

It was probably the effects of the burst that wore off.

LLM does the report explain the raw data in layman's terms? I mean truly layman's terms? My strength's lye more in the big picture/intuitive/psychoanalytical side of things....I have depended on this forum to understand the organic science part of the equation!!!!

Not to Hijack the thread, but I look at those 23&ME results and they look Chinese to me...I have been considering this test for my ds, but I have NO education/background to interpreting the results. Will the results come with an explanation?

For my ds, he tolerated the 5 day burst very well. Saw a calm almost immediately. A few days after finishing, we saw some mild facial tics appear. This lasted about 2 weeks, and then completely went away. He is doing extremely well. Other then that, I did not experience any other side effects.

oops....D3 not D7

My ds's tics completely disappeared 3 days ago...I mean completely gone!!! I reduced lipoic acid to 2x day instead of 3, but I don't think that was it. I think it was the effects of the steroid burst. Btw STILL doing great!!! From my nutritionist: Healing the BBB D7 1x day EFA 1xday Lipoic acid 100mg 2x day Strawberries, blueberries, & spinach (as often as they will eat it)

What was her temperament before all this started? My kids always had strong personalities and uninhibited. So a problem at home always appeared everywhere else...but I could see if your dd is typically on the inhibited side, she does not feel comfortable enough to express internal feelings/symptoms at school. Also, don't forget about the effect that fellow classmates would have on her. Peers have an amazing effect on our children that we do not have. She may have even seen other kids suffer negative consequences from peers for unusual or extreme behaviors. I bet she is holding it in all day and your getting the release.

His father thinks out of the box. What I don't understand is why the mental health professionals never ask the question, "What is the CAUSE of the imbalance?".

I agree

Maybe we need to send him a pandas kid for a week

Powpow, does AE come and go without treatment? I do not know anything about this. Is it possible that he could be dealing with this for years on a smaller scale and then these larger more symptomatic symptoms?

My nephew, age 21 just was admitted for the 3rd time for a psychotic break. He had his first one about a year ago which earned him the bi-polar diagnosis. He of course went off his meds about 6 months ago, so if you follow traditional wisdom, this was bound to happen. A week ago, number 2 admission. They pumped him up with psych meds and released him a week later. 24 hours later, psychosis set in, and my brother brought him back. When he described his sons behavior, I was struck by the similiarity with my ds. Manic, anger, crazed look, etc.... Of course, with all the latest research about infectious disease and mental illness, I have to wonder. Looking back, my nephew's issues probably go back to age 5. I really want to encourage my brother to insist on some form of a work up that looks for infection. Maybe I am biased because of our own personal experience, do any of you think that infection is important to rule out, given the latest research?

p.s...you will see wax/wane of symptoms for several weeks.....it drove me crazy...it unfortunately goes with the territory....for us, after first big episode, the waz/wane was short lived, but future episodes yielded longer total healing periods that included more wax/wane.

I know that some would consider me IVIG crazed, and I suppose I am...Gossip on the street, and the most recent Swedo study is implying that IVIG within first 6 months of first big episode yields the best result/cure...sorry guys, I know most hate that word.....its my positive side that I just cant let go of!!!!

That seems so young...has she started her menstrual cycle? As far as body types, I know my 8 yr old (HIs b-day today!), weighs 55 lbs soaking wet, and he is all muscle. I don't think it is a certain body type that is a part of the Pandas profile as much as the result of it....hyperactivity, anxiety..... Did she have a steroid before tonsils out to prevent inflammation?

If you go to NIMH website it is listed there

Hopefully, It will take just a little while for your brain/body to adjust to the meds...Did you ask Dr. C about this? I am really happy that you now have someone in your court that is willing to do the work to find you your answers!!! No, it does not sound like this is going to be an easy path....but then again, I have found that the best things in life never seem to come that easily.....Keep the Faith!!! Your in great hands...

I find it interesting that your Doc said this is not connected to his behavior issues, but in this site, under symptoms it references behavioral/mood/cognitive changes......

http://www.mayoclinic.com/health/hydrocephalus/DS00393/DSECTION=symptoms What else did he say? Is he not concerned? You probably have already visited this site, but I thought I would post it anyway.

Yes. I pm you.

Yes. That makes sense though. WE are fortunate that we live 20 minutes from his office. I can understand dr. K's position, I think he is bound by that legally. Can you have Dr. I talk to your peds doc? UGH..I can sense your frustration.

My ds will chew an entire packed of gum if I don't stay on top of him. I realized I have to hold on to gum for him or he will just chew 20 pieces...I have often wondered if the phenlyalinine that causes him problems. One or two pieces don't seem to cause any problems.

Wonderful news..I have been afraid of abx resistance. Glad to hear your ds is doing so well!!! We need more news like this.