Priscilla

I did by the Heel anti-inflammatory product, I have it sitting on the counter (with the rest of my home pharmacy . For some reason, I just don't feel like it would do anything. I am sorry I know that doesn't help, but If I decide to start using it, I will let you know.

I know what you are talking about when you say you have to breath to a certain point. I do that sometimes too. It feels to me like I have to stretch my lungs to a certain point before I feel like I get a "good breath". My dd did that a few years ago, before being diagnosed w/ pandas. It was a tic that passed. Funny though, because she is starting to hum and grunt a little more over the weekend, and today I noticed she is breathing out heavy every few breaths, where the other breathing tic was to breathe in deeply.

I think too many of the kids that get ivig get a "turning of the pages" for it to be a chance virus. Before giving ivig to my dd I consulted with the clinical pharmacist on the critical care unit which I worked. He is VERY knowledgeable, I know this from personally working with him and giving ivig myself to patients. He explained to me that many years ago, there was a much higher chance of getting a virus from ivig. He stated that the methods used today to "purify" the ivig are so stringent that the product is very clean. He said he wouldn't hesitate to give it to his children if necessary. His opinion made me feel a bit better about giving it to my dd. Hope that helps you some

Thanks for all the info. I think I posted under another topic about yeast, some links to behaviors (under hanging upside down) I am going to try colostrum too. I am going to make the switch to OLE on Monday. We are doing pretty good right now, just had 3rd ivig a week ago. Most progress we have seen so far

I will pray for you

I am reading that the OLE actually helps fighting the yeast http://www.candida-albicans-cure.com/olive-leaf-extract.html several other sites say this too. I think someone mentioned that it can cause yeast issues. Does anyone have any other info?

sorry, I am just really stuck on this right now, here is another site http://www.talkaboutcuringautism.org/medical/yeast-overgrowth-candida.htm I am really thinking this may be an issue for some of us, really seems to fit the mold. As I said, I am going to try to transition off abx soon. I am thinking of trying colostrum. I worked in veterinary medicine for many years (not that our children are animals) but I know (as a registered veterinary nurse and a Registered nurse) that our physiology is almost identical. Anyway, I had a patient (old english sheep dog) that had a severe chronic sinus infection that was fungal. We did weekly sinus infusions under sedation for this poor dog with antifungal medications for MONTHS. His mother, unhappy with his progress, tried colostrom. GONE, WITHIN DAYS! I don't know, I am thinking of trying it. Anyone have any experience trying colostrum?

Interesting, I found info on this site http://www.spdbayarea.org/symptoms_of_yeast_overgrowth.htm Nothing specific about hanging upside down, but alot of these behaviors seem to be what we are now dealing with. Tics disappeared after intial abx treatment. But now rage, add, and irritabiity seem to be whats left (along with some OCD). I had posted before about this, wondering if yeast overgrowth is what may be keeping us back a little. Maybe the abx work for a certain time, then yeast just prolongs the battle. I am going to try to transition of abx soon to see what happens. Wish me luck

I am not sure about IVIG but I know steroids have immunosuppressive effects (supress the immume system) in addition to the anti-inflammatory effects they are often prescribed for. I can't imagine that having your immune system supressed is good during ANY infection. That is part of the reason I skipped the steroids all together. I am not sure, there may be some other reason why it is contraindicated with lymes as well.

that seems long to me... at most i might consider 2 weeks... or hit it hard over 3 days then stop I agree, that seems to be a long time. You may want to have liver enzymes checked to make sure no damage is being done. I only give it dd for 3 days post ivig for headaches. I generally do not treat a fever unless she is very uncomfortable either. My thought is, a fever is the body's way of taking care of things, let it do its job. It seems alot of moms are posting other anti-inflammatory options. I know there is alot of advice online for anti-inflammatory diets too.

You may also consider having him tested for Celiac disease if not already done

Well you definitely have physical issues that are more likely causing the psychiatric issues than not. You don't have to have elevated strep titers for a PANDAS diagnosis, and PITAND could be a likely culprit (and I don't think the CBC will tell you much about that) For my dd, I believe strep started it, but now I think it is PITAND. Seems a case of H1N1 Dec 09 brought on this most severe exacerbation. But in retrospect, we have been fighting this for many years (probably since 1st strep infection. Have you done any other labs? (camKinase, Lyme, myco??) Seems your little one has been susceptible to almost every illness in his few years, has he been tested for immune deficiency? Cam Kinase may be a good place to start, or get them all drawn at the same time. Is your doctor listening to you? Maybe you need to look into a phone consult with one of the Doctors that are treating PANDAS. I hope you can get some answers soon

I am sure many of you are aware, but I just want to put it out there for anyone who isn't. I see alot of posts about what seems to be giving motrin, advil (ibuprofen) regularly because it helps with behaviour/ tics. NSAID's in general can be very hard on the body, especially if given regularly. Gastric problems and liver toxicity are pretty high on the list. I am a Critical Care nurse and have personally taken care of patients with liver failure d/t chronic use of NSAID's (non steroidal anti-inflammatory drugs). I just want to warn against becoming dependent on it and giving long term. Maybe natural anti-inflammatory substance would help without the side effects (fish oil, foods...) I apologize if this seems remedial, but like said, I have noticed alot of posts that seem it is being given often.

Did you have any labs done that results state you would need ivig? I would be a bit suprised that they jump to that without any labs. If so, go for it, I hope you feel better. I often wonder how many adults are afflicted with this as well. I am very interested about what you said about the mold though. I live in an area known to have stachybottrus mold (I am SURE I spelled it wrong). Long ago I saw a show (I think it was mystery diagnosis) where a child kept suffering from severe illness, asthma (cant' remember, but maybe even psych symptoms!) It was all due to a mold growing BEHIND the sheetrock of their home, not even visible. Makes me wonder if this could be yet another trigger for PANDAS/PITAND hmmmmmmm?

Yay, I was gonna ask you how it is going. My OLE came today, we have abx rx until monday, then I think I am going to try and jump ship too (yikes) We get a yeast issue too, she currently takes nystatin but maybe I should try the GSE any recommendations on a GSE product? She still has another IVIG scheduled in 4 weeks, anyone hear of any problems with OLE and IVIG?? Thanks for your updates, I will keep looking for them

stephanie2 posted about this last week, I think it was 500mg 2 or 3 times a day, I think 3. Its' under the "1 week after jumping ship" post, sorry I don't know how to get the link

As for alternative fitness, I believe in free play. I was just discussing this with someone (can't remember who uggh) But children need "unstructured play". You need to find something your child enjoys... walking, hiking, biking.. My dd 8 surfs (her dad and I too, so we do it together) but beyond that, she has told me "all my problems go away when I am in the water" Swimming is always a favorite. If you live where it gets cold, look into an indoor pool at a local college, you may even be able to set something up for a free swim therapy. Just some other ideas that may be fun: skateboarding, roller skating (outside or rink) snowboarding/skiing, climb trees, wakeboarding, jumprope, hula hoop,... make it fun, not too focused on an "exercise routine", play games.."I'll race ya.. Just take a lot of little opportunities instead of focusing on long rigorous exercise if you have to. I hope that helps, we have been fortunate that dd still likes to do alot of physical things, almost too much

Hang in there. I think 1 week post is always the worst for us. We just had our 3rd sat night, and waiting for the herx. Was the worst after the 1st, depression, rage, manic happy (disturbingly) We are doing aggressive tx every 4 wks, have 1 more left. We just started to see the most improvement over the last 2 wks or so, which makes us 7-8 weeks past the 1st ivig. Hang in there, it seems like slow progress, and sawtooth like NORCALMOM said. Just remember you're not just masking symptoms, you are going for actual "healing" and that takes time. Best to you!

Sorry you had to deal with that. I wouldn't take her opinion about treating for PANDAS too seriously. True, she is a Dr, but most likely YOU know much more about PANDAS than she does. Dr's still fall in the realm of human (although many think they float above it), so in the end, you have a better viewpoint as the mother. Go with your gut, and find a Dr that supports you. Best of luck to you.

I've approached the "hold downs" as a safety measure. My daughter bangs her head and/or bites herself during rage episodes. I tell her I'm keeping her safe and do the least restrictive hold that is effective. She tries to cooperate and my hold depends on to what extent she is able to cooperate. We established her "safe place" (on the couch, or bed-a padded place), where we can work through it. The key was for her to know that I'm helping her work through it, that I know it just happens and she can't control it. We've gotten to the point where we consider the meltdowns a chance to "practice" getting control and praise and celebration of calming when it does come is part of the whole thing. I think it helps her to feel less helpless. Thank you, we will try that. My dd also tries to bang her head on the tile floor, dive headfirst off the kitchen counter... so tormenting for all of us. Thanks for the good advice

we are doing 2gm/kg with Dr Lin. They just started a new study, anyone know what dose they are using?

Don't quote me, but I think I read somewhere this could be a sign of a yeast issue. I remember reading about alot of climbing and rage issues with yeast issues in kids too.

This is great insight. My biggest problem is dealing with the physical assaults. If dd is set off, she will follow me around the house (as I try to walk away from her) kicking, hitting, pinching, punching me... I feel like I can only take so much. I have held her down (updwards of 15 min) only to have her attack as soon as I let her go. It is so hard not to lose your temper when someone keeps screaming and hitting you. Has anyone had any success with a better approach?

look at the post "one week after jumping ship" It talks about how yeast can still be a problem with OLE. I am thinking about stopping abx next week, we have had 3 IVIG with good progress, but I think yeast may be holding us back from 100%

no more vax for us either. 2 flu shots and flu within 48 hours, coincidence, I think not. many millenium before us survived without them!