qannie47

http://organic3.com/gutpro/

My big AHA moment last winter, when I could not get rid of the stomach flu in my house was when I saw one of my twins turn and wipe his mouth on a "decorative" towel hanging in his bathroom....never realized they were both using it....It had been hanging there for a year...when I washed it, the stomach bug went away, and stayed away.

just abx 2x day, amox/clave. and supplements. magnesium, b6, pro-biotics, vit d, multi, cyaniding (started yesterday), efac's, fcts....

without rages...typo

What freaks me out is that he also seems to fit the bi-polar diagnosis. Feel free anybody to discount this as I feel I'm just panicking right now. I don't see any real lows...but coming off his episodes, in retrospect, I remember thinking he was a bit melancholy....although...after a pandas episode, anything other then constant motoric driven activities with rages can look like the other side of the spectrum.....confused.

p.s. added cyanidin to his regime yesterday....does this affect dopamine?

My ds 7. As I have posted, did beautiful after his IVIG 6/13/2013. A couple of small bleeps on the radar, but seriously, 10 of the first 12 he looked like the poster child for "a well balanced kid". I thought we were done. Then week 12, a 3 day flare. Then done. Two weeks later, last week, I had the school calling.....Oh yes, It took 2 teachers and the school psychologist to keep him in his chair. Acted like a nut job. Yelling, telling adults to get out of the room, rage, motoric movements off the chart. Banging his head on his desk....ugh..never saw that before. By the next day, normal. Just beautiful for 4 more days. Today? Same stuff. Although today, he took it out on his classmates. Telling them that he hates them. That he is going to kill them. Really? They had to remove him from the classroom. Lucky for me, today was early dismissal. For the last 6 hours, it has been . He is just out of control. Taking exception to everything and everything and all the same stuff. Made DAd take them to Karate. I am crushed. How can this be? Yes, I had stomach flu last week, and his teacher had strep. But HE did not get sick. Had him tested. I know about the exposure theory....but by God, how can a child do so well, and then do so bad. Spoke to Dr. K, his pediatrician, doc friend at Chidren's whom has been converted by watching my child's journey...Maybe it is something else? I ask? They all feel that this is the only thing that fits the situation. Pandas. Really? I mean Really? I just don't know how much more I can take of this. Yes, I am being a Drama Queen. I am just so fed up. There. Done venting.

We too have been fortunate that my ds's school "got" Panda's right after they experienced an episode, a very big one, firsthand. I guess I was lucky that my ds had already established a baseline behavior at school that was completely opposite of his Pandas persona. I believe, after it took 3 adults to get him thru the day, there exact words were, "There is not one person in this school who believes that this is a behavior disorder, or a family problem, it is clearly medical". I have found this thread very interesting regarding the 504. So far school seems to want to work with me, however, what happens when a 1-2 day wax/wane turns into 2 weeks. UGH... I hope I don't have to test his school in this way to see how they hold up. It is good to have this information, hope I never need it. As usual, great information.

I think these one step forward, two steps back days can drive all of us parents nuts! In speaking to Dr. K yesterday, he seemed unimpressed with my ds's recent "pop up" flare. For our situation, it seems it is something that we all have to get used to, as long as he returns back to baseline after a couple of days...easier said then done. Another thought, years ago, I was on a SRI for depression. I do recall that while it provided relief, there were great fluctuations in day to day mood. It makes sense that these type of aides can be imperfect because, while they can help, they probably are unable to mimic an otherwise well balanced brain chemistry.

wow...I wish I could attend...

I would get her strep tested. One of the few symptom's my ds has with strep is headache, and he never looks sick.

I have been messing around with the elimination diet. Gluten, dairy, and even food dyes don't appear to be a problem However, chewing gum....Phenylalanine, seems to trigger and exacerbate the anxiety that our Panda's kids seem to be carrying around with them. Today my ds was completely calm, and he found some gum. I hesitated, but then thought, let's give it a try. With in 1 hour, he was jumpy and irritable. NO MORE GUM. Any of you experience this, or have any thoughts?

Good Luck! I know that because you are a Panda's Parent, you will be relentless & persuasive! Let us all know how it goes!

Thought it was interesting that Chiro feels a strong connection between gut and autoimmune issues....so he is treating the gut with acupuncture as well...thank goodness my ds is hypo-sensory....never even flinched....

Point well made. I would not want to be painted in a bad light because of one or two peoples opinions.....

I Really don't get in the habit of posting such negative posts, it just hit a nerve...I hope I did not offend anyone. This has always been a very positive forum.

Did Dr. K administer 2nd IVIG? What does he say? Hold tight, the timeline is up to 12 weeks for improvement...Prayers for you....

Feel I must chime in here..How can he just "drop" somebody who is suffering. That is just horrible. Sorry, but when I read this thread it really burned me up. About 3 months ago, when I was considering getting a second opinion, and called his office. I wanted to speak with him and we set up a time for me to call back. Then I was notified that this conversation via telephone was going to have to cost me $250. pre-paid. I promptly said , NO THANKS. I later got an unsolicited call from Dr. Lechtman out of Yale. The man called me himself. He had heard about my ds from his research team. His message said, " I have heard that you have a son with Panda's and that you have some questions. I would like to talk to you and see if I can be of help and answer any questions myself for you. Here is my direct number...." I called him, he answered, and spent a half hour on the phone with me. NO money, just genuine concern and a desire to help. That is the kind of doc that I would entrust my sons health with. I've called him one time since then, and again, took my call, and talked with me. no. $$$$$ I only tell this story because I just have no tolerance for a doctor who could leave any child/concerened parent hanging. It is his job to have protocol in place for his patients when he is out of the office, or whatever.

Ds doing well. Week 12 bought a pretty moderate flare after three days of 99.3 fever. Just ended 14 days of abx 500 mg amox/clave 2x daily. After a quick return to 70% about 7 days into abx, he is now 100% and holding... back to normal for 3 days now. You all know he started acupuncture, so I hope this is an added benefit to the IVIG.

I am lucky to have a resource at Childrens Memorial in Chicago. She is high up...very cautious, and probably one of the smartest doc's I have ever met. When I asked her about IVIG and risk, she said low risk. She said go for it, for my ds. If she says it is low risk, it is low risk.

Fired the first chiro after third visit...was not impressed with the 3 min she spent on treatments, and never even did an adjustment...put him on some rolling table for 2 min. Plus, the $215.00 per visit. Decided to call my own chiro from the past. Explained everything, and objective. Started with him today. He spent 1 1/2 hours with us. Adjusted back, did acupuncture with needles/ vs accu/pressure with gadget (that is what other doc did: took her 30 sec). Second doc also gave me supplements that included vit D drops, vit C with caltrate (or whatever), and a better pro-biotic. He is suggesting 10 treatments to start then 1 monthly for maintenance. The first doc wanted 24 visits plus maintenance. My doc felt that if ds could handle the needles that was the route we should take. He also felt that 24 visits was overkill. He is also working with us on the $$$. $70.00 per acupuncture treatment and $30.00 for adjustment. He also put Kinestetic tape along his spine for spinal support. (he treated my foot fractures years ago with the same tape & it worked!). Anyway, I trust this guy, and I know he specializes in acupuncture and nutritional health. He will spend 25 min with him with each consecutive visit... ds fell asleep on the way home and fell asleep 1/2 early for bed...thought that was interesting. will keep you all posted.

thanks for clarifying

there is no true test for lyme?

One of my ds symptoms is to be "out of it". Dr. K says that this is common. Its like your talking to them and they are not there, right? I have to verbally summon my ds several times to get his attention when this is going on during an episode. Yours sounds a little worse then what I experience though, I would check for seizure...struck me that he had been playing a video game while this was going on...they can cause them.

If you can afford it I say go for it. Pandas is not understood well enough by ANYONE to say that IVIG would be ineffective.