lynn2

I didn't actually mean to say that the sinus infection was resistant to OLE (although I see that I did say that!) What happened was that I was unaware that he had a sinus infection, things were generally bad and I discovered that potential PANDAS diagnosis, so I never went back and upped the dose for OLE, just jumped ship the other way and went to abx. I have tried cycling grapefruit seed extract with other things, but so far the other things don't work nearly as well. So I just go on and off. It's sure not perfect.

DS ( 14, also 6 ft and 180 pounds) has had periods where he has not wanted any more treatment. For him it is that we have tried to do many things and none of them has really worked so far (also true of IVIG so far) In his opinion, quite a few things have made him worse. I have started sharing with him why things are happening, that we don't know if it works or not, and why I think it is worthwhile to try. He is amenable to this approach right now.

I actually used a higher dose for DS, who is 180 pounds (I used 2 of the 20% 500mg pills twice a day.) It cleared up one PANDAS exacerbation, but ultimately it couldn't handle a sinus infection that developed. It did ramp up the yeast, and GSE did take care of that, although I worry about using GSE for too long? I'm so glad to hear that things are getting better.

For us OLE, although very good for bacteria and viruses, actually increased yeast. We are often on the wrong end of remedies though. Grapefruit seed extract works best for us, along with Candida Clear (oil of oregano, capryllic acid, few other things.)

You make an appointment with Louise for arrival--we did 10 one morning and 9 the next. How long depends on your child's weight since the flow is metered to a certain rate. For DS at 160 it was about 5 hours/day.

When I went there in the new infusion center they had an open room with individual treatment alcoves. Each alcove had a ceiling mounted monitor that could be for TV or for DVDs. You should check with Louise about the logistics of what to bring to be able to play DVDs--I used both a computer and a DVD player that I brought from home. They don't have any food there (they do have coffee!) but there are a few nearby delis etc that you can pick food up from, or you can put your own food in the refrigerator. They gave DS ibruprofen, benadryl and prednisone before the infusion began, and twice more each day and gave me a prescription for pred. for the next two days. They give instructions to hydrate intensely 3 days before, during the infusion, and for several days afterwards. DS had a slight headache and some tiredness two days after the infusion, but no nausea. If you bring DVDs, I recommend something lightweight and easy to follow. I think DS actually really enjoyed the entire experience. I was pleasant to lie in bed, slightly drowsy from the drugs, eat whatever you wanted and watch movies!

Right now DS is on treatment strength Omnicef. He did not do at all well with Zith and augmentin did not seem to have any effect during a one month trial. Family all cultures negative. I haven't done lyme with igenex, but regular western blot was entirely negative. Michael, I am increasingly wondering what you are doing and await your revelations!

DS had a 1.5 mg/kg dose. He did get a low grade fever and muscle aches last week, after his grandmother had the same bug. That seemed to be over quite quickly, but it could have exascerbated things. Priscilla--I am so happy for you!!

First, thank you guys for your posts and support! Peggy, I agree that I would like to have some forward progress before proceeding. I might consider doing the second IVIG without this, but DH, whose cynicism I use as my truth check, would not support it. However, I am also not willing to go forward with DS' symptoms as they are if there is a reasonable intervention. I should add that I absolutely agree that TS and OCD are symptom labels and no one knows what they actually represent. That's why I spent so long turning down treatments that just hid the symptoms! Priscilla it sounds like you basically had the same protocol that I do. Did you see any gains in between the two IVIGs? DCMom, I am glad to see that 6 weeks time frame. I have been looking through old posts and I've seen a lot of people who saw progress in the first two or 3 weeks, and I have been sitting here sadly thinking, well, that didn't happen. Looking back further, it appears that Dr K has said that for teenagers who have had this for a long time, the time frame might be more than 2 months. Yikes. But that is basically what I am hearing from Priscilla too. Well, it is 4 weeks today. Maybe I don't have to make this decision right now. I will see what today brings! DS got so angry yesterday that he broke my glasses (He has had an obsession with them for a few weeks, but I think/hope breaking them was an accident.) but just now he called and said he was walking around the school area with his friends (!) I haven't heard about doing things with friends for years!

DS14 had IVIG in late August and has a second IVIG scheduled 6 1/2 weeks later in October. We have not seen any gains. What we did see was substantial negative progress which has slowly recovered to a level below baseline. Ability to focus is about baseline, OCD is worse than baseline, rages and tics are way worse than baseline. Admittedly, it has been "only" four weeks, but DH, who already feels that he has been led up the garden path (abx didn't help, nor did steroids, but DS has had whatever it is since 6, now he is 14), is pretty adamant that if we don't see any gains, we should stop all treatment and assume it is Tourette's plus comorbid OCD. Cunningham was 150, not in exacerbation. He is deficient in 12 of 13 s. pneumonia titers. So that's the question, IVIG, even if there is no gain, or assume that he does not have PANDAS? Please advise!!

I hope everything turned out OK Stephanie! That is always the problem, the stupid school and how they will cope! I always found Candida Clear, which contains both antifungals and bad bacteria killers is the best. I give it away from abx, but I haven't heard that it interferes with the abx.

I would say the tics backed off within a couple of days after switching. Just want to note, though, that there are plenty of people on the board who have had the opposite experience where Augmentin or omnicef was the villian and zithromax was the saviour.

Tantrums, thank you for posting that--it really acted as a lightbulb for me. So that's why I get the explosions in those circumstances!

I had DS14 on a month of Zithromycin and his tics were substantially worse. He switched to Omnicef and tics backed off (not miracle cure gone, mind you, but back to baseline.) Prior to that, he was on Augmenticn, which didn't help but didn't set off tics either. So maybe try switching abx for starters?

I don't know the answer Justine but I'm interested in the question! All I can say is that DS, usually quite cooperative with supplements, flatly refuses the clay, stating that it "tastes like spit" So for us the AC is the only game int town.

There's nothing like all out goofiness to make you chuckle. You keep laughing girl--it gets us all through! Hope everything is getting better for the rest of the day!

Last year my DS14 discovered Stash decaf chai tea and swears it helps him focus. I watched him and it seemed like it really does. Don't know whether it was the spices (anti-inflammation?), the hydration, the ability to step back and drink the tea or just plain placebo effect, but if it works, who cares? I also give him grapefruit seed extract because the brain fog can be yeast related. Emerson, I so feel for you because I remember DS coming home furious with himself because he had no idea of the homework or what they covered in class because he hadn't been able to focus. Good luck to you this year, but with a 4.0 average, it looks like you are making your own luck!

Curcumin for yeast? That's very interesting. I thought it was anti inflammatory?

Sometimes (especially today when I am loaded for bear anyway) I just want to go up to any member of the medical profession I can find and scream at them that just because they don't understand something doesn't mean it doesn't exist. Sorry. One of my roommates at college was pre med and she already had the arrogance thing down. Then I think about the unique people that have helped us all with PANDAS and feel ashamed and guilty. Great. More guilt.

Brandy, bless your heart! Thank you for posting. I am so happy for you!

Thanks Momaine and Saidie, and indeed to everyone on this board. Without you I would be sunk! Saidie, how are things with you now?

Very interesting question--I haven't got that far but am very interested in the results.

Suzan, do you think that the food intolerance will go away once the PANDAS/lyme treatment has resolved things? I'm hoping that the yeast problems will, but I don't have any particular reason for thinking that they might.

Hi Noelle I don't know about Tenex, so I can't respond to that, but I certainly share your belief that stress is a major problem with our PANDAS kids, and that the very highest stress (for both us and them) is school. Someone said on this board that just reducing stress in the home can calm down some of these symptoms (as opposed, I suppose, to what I am inclined to do which is to load the poor kid up with advice and expectations and concerns....) I am really planning to do that this year. The problem is that the homework needs to be done (and increasingly, grades are important as kids get into the jr. high and high school year), and that is really hard when you are struggling with the combination of rage, ADHD, and just plain adolescent snootiness. I hope once your daughter gets through the first day things will have calmed down!

How great to hear that! We are almost one week out. The first couple of days were truly amazingly great--all the rage and OCD disappeared. Then they came back...I think the initial improvement was related to the prednisone they gave during IVIG to keep headaches at bay. Curiously, we noticed no good effect at all during his initial 17 day prednisone taper--however it appears that he had an active strep infection during that taper, and likely the prednisone's effect of lowering the immune system exacerbated the strep. I'm hoping your improvement keeps getting greater and greater! Lynn