qannie47

although I don't understand why dr k does not write abx prescription....he always did for us

go to another doctor

rowing mom: Interesting about your dd and gum chewing. I wonder why? We have been giving my ds those old fashion wax bottle candies. The ones that you can chew on the wax afterwards and they have been helping him immensely with his mouth tics.

Thanks rowing mom. If my memory serves me correctly, the form of Lipoic acid is not the same one cited in this abstract, there are 2 different forms, hopefully, I am correct. Just in case, I have sent this to the prescribing doc....

Yeah, I get that pr40....The school thought to give him wax candy, you know, the stuff with the flavored juice in it and then you can chew on the wax? Gave him something to do with his mouth....work out his anxiety....it worked quite well...Yesterday, after they gave it to him to chew on all day, it was the first time he came home since this started a week ago that I did not see any tics. So I will go buy the wax candy....if it works it works...and yes I have been celebrating since the end of his episode about a month ago!

:) To both of you!

My sons igg levels were normal, but on the very low side of normal. The lab reported 0.8-I don't remember 2nd range number off top of my head. My ds's were 0.9. So that is low. Also, ds had ivig 3 months prior to this lab work...so I do wonder what that lab work would have showed prior to IVIG. Does anybody know if IVIG would have increased is igg levels?

Thanks for sharing...it is amazing how such a simple act can bring so much joy.... those of us whom have lost so many of the simple things because we take on the daily, sometimes in 15 minute increment fight to not lose our children...to....whatever....rejoice when we here a story shared, about a day filled with simple pleasures.

Mazoo, He takes his probiotic and 100mg of Lipoic acid. This all seemed to start when I introduced Lipoic acid, but I cant see how that would cause that. He has been taking the probiotic mid day for a long time so I don't think that is the problem either. What I think is that this is just another progressive expression of his Pandas. He always had the Gross motor tics (big movements and Karate chops) but these new ones are more simple which seems to be more typical of what other people report. I just find in interesting that while the rest of his symptoms are next to nothing, this is popping up. He was about 2 days out from finishing his 5 day steroid burst when this all started, so maybe that is what caused it. We gave it to him to clear up the residual symptoms that were hanging around and it worked. One time shot though. So hopefully this will pass.

thanks guys....I think I am going to start with adding the magnesium back into his regime

I have seen a major improvement since my ds moves out of his last episode. Mood, emotional regulation, anger, motoric movements, all pretty much 90% gone. School is reporting great things as well. However, I have noticed while my son is falling asleep, he is clacking his teeth for about 2 minutes nonstop. He is also Making "rasberries" intermittently. I am seeing some of this during the day...I am seeing more of this in recent days even though the rest of his symptoms are gone. I looked on the internet and found "Tic Tamer". A quick read shows quite a bit of positive feedback. anybody have any experience with this? I ran out of magnesium supplements about a month ago...I have read that helps tic as well. Really want feedback on this tic tamer....

Warm thoughts......

My ds just went through a battery of tests with a hospital admission. Admitting neurologist was smug in saying that ALL his blood work was clean and that he was SURE that his LP was not going to show anything significant. Sure enough...the O bands....autoimmune disorder....his peds doc just wrote a letter with an autoimmune code and asked for monthly ivig treatments be covered. I am not pushing every kid to undergo an LP, but that is where we found answers that helped when this time around he looked squeaky clean from a blood work perspective....

My non Pandas child has chronic stomach issues. I saw that you are already giving probiotics. What time of day are you giving it? If you are not already giving it in the am, I would try that. Perhaps it will lend the bulk of the digestive support when he is awake and eating?

Has anybody worked with him? He was very interested in my ds. We spoke on the phone today for 45 min. I must say I was further impressed. He seems to have extensive knowledge on etiology of autoimmune disorders, and the brain. He thinks he can help us with Pandas....he says my ds would actually be an easier case then many of his others cases.

Hold tight...When new to this disorder, I made lots of changes rapidly anytime I saw a negative response. This caused a lot of confusion for me, and in the end made it difficult to get a good "read" on the situation. Allow some time to pass before making any quick changes. Even when on the right course, you will still experience good days/ bad days....The difficult part is discerning what is just a "quirk" that comes with this disorder, and what is a red flag that requires attention/action. Time will lend itself to that. One thing that I have learned over time, is that it is impossible to make perfect judgement calls 100% of the time. It takes time to figure things out for your unique child. The good news is that the sky does not fall with the wrong call...What is wronged....can always be righted....I share this to give you some confidence and to lessen your stress level. It was my constant "Am I doing the right thing?", that just drove me crazy.....

Did your child flair with strep a couple of years ago? I read one of your former posts, and it sounds like he just started with Panda symptoms recently?

Have you done another rapid strep test? Certainly your doc is willing to do that. It took 30 days of abx to wipe out infection. Also, there is a wax/wane pattern that emerges as kids are healing. One day good, one day bad, one day with 2 hours symptoms, etc...What you should see though is a continued progressive movement forward during the healing phase which can last several weeks to fully recover. If your child is less then 70% consistently better, then I would say more rounds of abx. The roller coaster ride of two steps forward, one step back is in my opinion the hardest part of this disorder to get used to. Get the rapid strep for sure.

How do I edit a post...is that possible? UGH

I meant to say 50% raised their hands!!!!

My ds's pediatrician just attended a physicians conference in New York. He said they addressed Pandas!!! They also talked about the mouse study. He said that they did an informal raising of the hands and asked, "Whom of you believe in Pandas?" 50 RAISED THEIR HANDS!!! I think this is GREAT PROGRESS!!!!!!!!!!!!!!!!!! I bet two years ago the hand raising would have been very low...

While I have not found 5HTP to have any great affect on my Pandas child, I HAVE HAD GREAT RESULTS WITH HIS TWIN. His twin is borderline adhd with sensory issues. The result is focus issues, impulse issues, disorganized thought, emotional regulation issues, rage issues....After about a week, (started about month ago), I saw great improvement with all the above listed issues. His work/behavior at school has improved dramatically. So yes, I think that anything that supports serotonin levels is a good thing. Years ago, I tried melatonin for personal sleep issues. It worked great for about 10 days and then I had this crazy "rebound effect". Messed me up big time for about 2 weeks until I worked it out of my system. I would research rebound for melatonin. Perhaps it was just my brain that could not handle it.

Yes, some contain strains of strep. While at times I have been concerned about probiotics causing flares, I have been able to rule that out. That being said, I now do use a product called Yeastbiotic by Organic 3 inc. You can go to their website. Must be refrigerated. It is approved for Panda kids.

Things that jumped out at me with your last post. You mentioned that the psyche meds have never really helped much....So why stay on them? I only ask for two reasons...it seems that from what I have read, Psyche meds don't seem to help Pandas kids much, or consistently, correct me if I am wrong. Also, the main reason I have stayed away from them for my ds is because of my personal experience....About 25 years ago, I had a clinical depression. I was put on Imipramine, which I believe is an SSRI. What I remember was that while it did lift my depression, I had big mood swings with it. Nor did it do anything help my self-esteem, which took quite a hit with all that accompanies a clinical depression...anxiety, paranoia, lack of self confidence. I especially remember being so self conscious about how others were perceiving me, and that was just AWFUL. It paralyzed me, and it steals one's ability to be spontaneous...never mind the brain jam that one experiences when all you can think about it why do I feel so awful, and what are people thinking...it just gets in the way....I was out of school when I was dealing with this, I can't imagine that. I believe in meds. I truly do. But I do know that they come with a price it seems, and while meds are good, they are not a cure all. That was at least my personal experience. So sorry for your Ds. I will add him to my prayers....

My ds is young, going on eight, so their is the age factor to take into consideration when it comes to executive thinking. That being said, my Ds, when NOT in a flair ranges from High energy (but not hyper) to very calm, focused & emotionally regulated. When NOT in a flair, school does not present a problem for him. He is not the child that sits down does his work, and you barely know he is there, but he is very functional. When IN a flair, all goes down the tubes, and he looks like a typical ADHD child with behavioral problems. It appears that at this time, he is in some strange "fight or flight " mode. He is disorganized, cant focus, and agitated. My ds had MAP testing done and HE was IN a flare...Interestingly, his scores dropped 40% points putting him in the lowest 30% in Math, and his reading scores were an equal disaster. My ds has been recovering from a Flare for about 3 weeks now. I was just informed that they are putting him in HIGHER level math. HA!!! His teachers words were, "Despite how much class time he missed and on the days that were so difficult for him that I did not think anything was registering, He is doing great!" So go figure. So my conclusion is that potential is potential....when your son recovers he will catch up quickly....