lynn2

You are absolutely right Nancy, especially after reading this morning's posts. Sadly, they only allow 3 questions (although I guess I can see the point in that, it likely would take up a fair amount of bandwidth to set up and record answers to a 50 question quiz ) I will try next survey! Or people can respond here if they are interested!

I hope this works. Looking for any data people can provide!

I was reading this and feeling very anxious since DS will get IVIG tomorrow. Then I decided to look back through the posts and noticed that everyone that I could find that posted about the black period of symptom ramp-up and getting worse and no improvement(from IVIG to maybe 4 to 12 weeks out)later posted about substantial gains and improvement. It is sort of hard to calibrate in real time because the amount of time between the sad posts and the happy posts is just far enough that you forget or don't realize it is the same person. I hope things improve soon for you and that you are the next one posting a happy post! Lynn

Don't know the answer, but I'm interested in the question! So just getting a throat swab and culture isn't enough?

Thinking about this and remembering that the literature on many of the abx state that you can't take antacids with them. So back to bentonite and charcoal?

My DS14 doesn't start until Sept. 8th (a Wed) then is off again until the 13th. (I love living in Queens) I'm pretty worried, but he is a tough kid and will make it through. Good luck to you and all of us!

I've noticed this problem with DS14. For some school assignments that he has gotten stuck on, I've had to sit with him and help him "decode" his thoughts into standard American English. They are good thoughts and indicate a functioning brain in there, but it just doesn't come out in the standard noun-verb-modifyer way that you would like to see it in. In general if you read his essays with insight they are pointed and interesting, but unless you are willing to interpolate a lot you will not understand them at all. There is also a lot of the non-specific word problem (everything is a thing.) I never really connecdted this with the PANDAS routine. Wow. If IVIG would fix this, it would be so incredibly helpful. Lfran, I've had the same concerns as you about making DS think there is something really wrong with him. While I don't want to blame him for things he can't help, I don't want PANDAS to be a crutch for him, or an excuse for whatever is wrong in his life and a reason for not doing anything about it. My Mother in law, at 93, is currently out in the back yard doing battle with the squirrels for her bumper crop of tomatoes. She is winning even though she is a bit tippy as far as balance is concerned. Nothing stops her. That's how I'd like DS to be. (I'd like to be like that at 93 myself, but that's a bit OT)

I first just want to say I am right there with you looking down the barrel of high school this September and wanting things to be better for my child! The biggest thing is to reduce stress as much as possible at home and let them know they are loved (to the extent that is allowed by the adolescent code, that is. ) We tried a month long tapered steroid burst with DS14 and had no good effect, probably because DS also caught a cold mid-burst. Advil is helpful though, and we use it for those days when things are just too much (usually after symptoms have started.) IVIG this week.

"I forgot about my heart until the water hit me, and all I could think was that ds would never get right care without me to drive it." That is so exactly the point. OK, I vow that this week I will make an appointment for a checkup and for the dentist (his appointments are months out, so by then everything will be easier to handle, right?)

Kim's comment on another topic really resonated with me. I was thinking just today that it has been about 3 years since I got a checkup and DH just went to the dentist after a similar period of absence. Not to mention the impact that all that stress and lack of time to exercise or meditate or whatever makes on us. (And don't forget, all that wine adds up )

I particularly like the phagocytes eating the germs! yum!

First of all, I am now Lynn2 (formerly Lynn), for some reason changing my email has made me a new person (you know, that might be an advantage from time to time...no, OT, sorry) Just wanted to update our story. We discovered PANDAS last spring, think that DS has had this since he was 6 and he is 14 now. We started with Augmentin (850 mg x2)and a tapered steroid burst neither of which were helpful, and later (after blood tests) found that DS had had an active strep infection when we gave him the abx and prednisone and that he actually had another strep flare up during that month. We tried Azithromycin (500mg/day)which did not seem to do anything and during this month DS had a lot of brain fog and reduction in math skills (resulting in pretty mediocre Algebra regents scores for my little guy who used to walk through math like it was an open field). We switched to Omnicef (300 mg 2x)while thinking about whether we should do IVIG or not. During the Azithromycin period I started doing pretty strong probiotics (VSL #3)because I believed that the brain fog stuff was connected to yeast problems (This is not the first time yeast has been a problem). The VSL was also not helpful and may have contributed to things being worse (I've since seen that this probiotic has some strep strain in it.) I was pretty happy to stop the Azith and stopped the probiotics too. The Omnicef seems to have helped some. I say this because I sent it with DS to science camp and he (through my stupidity) ran out for about 8 days while he was there and complained that as soon as the abx ran out he started to have trouble paying attention in class and more tics. He also had some sort of cold or flu when we picked him up. I put him back on the Omnicef and the cold thing went right away. Anyway, also while he was in camp he started complaining that he had "jock itch" which was resolved with Lotramin cream abx (an anti fungal) and when I picked him up, he also had athlete's foot. My reading of this is that he was working on a pretty intense case of yeast. Abandoning probiotics, which have never worked, no matter what kind I have tried, I started him on my old yeast protocol (grapefruit seed extract--(Vitamin shoppe brand drops), 5-6 drops in orange juice once or twice a day along with 2 Candida Clear twice a day (from NOW)) That was about a week ago and since then I have been prepping him for his Algebra regents retake and I have noticed day by day the old math ability is coming back. I think it is the yeast control. DH thinks it is all cyclic and I am just kidding myself. It could also be the different antibiotic. We are scheduled for IVIG for the week after the regents, then school starts two weeks later. Wish us luck! Lynn

I used Pure Encapsulations, 500 mg, 2 in the morning and 2 in the evening, but I worked up to that amount to avoid herxing type behavior. By the way, I am now apparently Lynn 2 since I changed my email and apparently am no longer recognizable as myself.

My DS had a strong increase in tics on mangesium taurate. I stopped and started several times because I had heard such positive things about it. Each time, there was a measurable increase, but it went away within a day or two when I stopped the taurate. A few other people have had this problem.

Hi Kim, Thanks for your concern. Right now, DS is getting a calcium magnesium zinc daily and a borage/flax oil supplement. He has been doing this for about a year and it seems to help with attention and sleep issues--not sure if it is helping with tics, since he waxes and wanes anyway. In addition, fish oil made him incredibly inattentive and annoying and multivitamins (and even enriched cereals and cereal bars) have very bad mood effects on him. I suspect the problem there is vitamin B6, based on a two week trial that I will never repeat! I checked the mg-taurate and acetyl l carnitine and they are different forms of capsules--and capsules have not been a problem with other supplements. Quite frankly, I am afraid to ever give him more amino acids, low doses or not, since he had these quick and frightening reactions to the ones I gave him!

I just wanted to add to that good advice that I gave DS magnesium taurate for 2 days and his tics immediately and clearly got worse. He isn't on any meds. I stopped the mag. taurate and his tics slowly improved to the original level after a week. This happened even more dramatically with Acetyl L carnitine. I agree that even though these are over the counter supplements, they can have dramatic effects and must be approached with caution and medical advice! I wonder, though, why my son is so different from the many people on this board that have been helped by these supplements?