pixiesmommy

Neither here, but my mom is RH- (I'm her oldest, so no meds for first pregnancy) and I was jaundiced as a newborn myself and have had strep issues, though not PANDAS, or at least as bad as my daughter has it.

To clarify, the "internet gossip" was in regards to certain supplements, not in regards to whether or not steroids help. If he didn't think steroids were helpful, I don't think he would use them to diagnose.

There are lots of good suggestions on the board. The combo that we are doing right now is: Probiotics (some say to avoid the s. thermophilis strain, some don't have problems with it) - we use FLORASTER brand which is a good yeast, Kid Calm (which helps tics and is a magnesium supplement) and a quarter of a Melatonin tablet at night for sleep. I also use Flax Seed Oil (but have also used cod liver oil in the past) and I am dumping all the supplements into a smoothie so she'll take them. (My DD is 9, by the way.) We also do epsom salt soaks. We also do the Feingold program, which is pricey to get the info... www.feingold.com to read about it.... but basically says that some kids have problems tolerating foods with salicylates and it gives you a list of what to avoid. The basic things to avoid are: anything with artificial colors or flavors , "natural flavors - because they can be made of anything, fruits other than tropical (ok list includes- pears, bananas, lemons, limes, mangoes, guava), tomatoes, almonds. Some kids are so chemically sensitive that smells can bother them as well (new carpet, scented shampoo, etc etc.) If you buy the program you get a list of "safe" items by brand which is really helpful when trying to rule things out. Again, pricey, but I have heard PANDAS children do well with EFT and RIFE therapy, as well as chiropractic adjustments. I know of 2 that have been cured- or long stabilized- with the help of a chiro. Manda

Regarding the Dr K comment about tick-y vs OCD... that was me The specific wording was not "OCD" though... it was something more like psychological or behavioral symptoms. I say this because (let me give you another headache) we have had a hard time in our own personal experience, sorting out specifically what is OCD and what is a tic in some instances (IE- skin picking on fingers.) I'm a little confused (okay more than a little) about the steroid question because we also specifically asked him this and his response was, "You just can't keep a kid on steroids. It is NOT a long-term treatment." He obviously knows about this forum and reads it. I mean, why wouldn't he?? He told me several times that things were just "internet gossip" while giving me a pointed "I know where you got that idea" look. Things that are ONLY on this forum (that I have found, at least!) about PANDAS, treatment, drs, so forth. And I did not mention anything about finding that info online. Not that it wouldn't be easy to put two and two together... but I definitely got the impression that he reads us While PEX kind of scares me, I know it has been done time and again for other things and it's more the anesthesia that scares me than the procedure. Pixie has been diagnosed with Bipolar (diagnosis prior to PANDAS) and while I don't wholeheartedly agree with that diagnosis, there IS a history of mental illness in my family and I would hate to do anything to trigger more of that (which anesthesia CAN.)

Thinking of you and holding you all in my heart today as you go through this.

Thank you for sharing. Can someone PM me as to how to join the email list? Thanks again, Manda

Born and raised, but no longer live there. I'm in IL now... and lately I've been grateful for it (we are close to Dr K.) I still do get quite homesick though. Manda

So.... are you giving saccharomyces boulardii AND probiotics? We are (thus far) just giving the boulardii but no probiotics. I'm putting the antibiotics in a smoothie w/Kefir. Do you think the Kefir is killing the antibiotics?? Yikes!!

Interesting. How would we do such a thing, do you think? I found this: http://www.mghmind.org/Faculty/young_anne.html She is a lifetime honorary member and in the US in Boston. Think it's worth contacting her? Or is there another route?

I'm curious about anti-fungals and why some of you are using them. Interestingly enough, long before I had heard of PANDAS, I was thinking of begging our ped for anti-fungals for Pixie because I had read that they may be helpful in children who had sudden-onset behavioral issues. Also, I'm not sure if it's relevant (because while *I* think it is, no doctor we've spoke with does!) but we both lived in very moldy/mildewy conditions for the first few years of her life. I worry and wonder constantly what impact that had on things. Thoughts? Why do you/don't you use anti-fungals? Who prescribes them for you and for what reason did they originally prescribe them? Are there any over-the counter? What are the risks? Did you have to ask/Were they recommended? Do you feel they have helped and why? Which one(s) do you use and how much? Feel free to answer any questions I HAVEN'T asked too.

http://www.nlm.nih.gov/medlineplus/news/fullstory_89334.html DH was telling me about this a few days ago and I wanted to be sure to post it here too. Another thing to think about!!

Another one of my friends said that she had heard that you negated the benefits of probiotics and antibiotics if you gave them simultaneously. Right now, I give my daughter (post IVIG) a smoothie containing her antibiotic and probiotic in the morning. Does anyone know if this really does negate the benefits? Thanks, Manda

She worked with us 5 years ago and did Pixie's allergy skin- and blood-testing. Everything came back negative and she was still puzzled why she was getting the "unexplained" fevers, so recommended an ENT to take her tonsils out. Her bedside manner was terrific and she seemed really smart and interested in her work and in Pixie's case... but essentially told us she could not help us any more after the tonsils were out. The office we saw her at was the Concord office and while I really liked HER, the office staff was horrible. I have been trying for years to get her records and never can get the "right person" on the phone. Arghhhh!!!

You are in my thoughts tonight. Please call if you need a shoulder. ((hugs)) Manda

I got Zellies granular in the 1 lb bag ($7.50!) http://www.zellies.com/catalog.asp?prodid=...;showprevnext=1 because it was the most "pure" that I could find. I wanted to be as sure as possible that it didn't have additional "stuff" that would aggravate Pixie. We do Feingold for her as much as we can. I'm not sure if they (Feingold) has one that is approved, but I'll head over to that board and ask. Also, if it's "cut" with other -tol sugars it can cause diarrhea in some people. I got the gum too: http://www.zellies.com/catalog.asp?prodid=493494 It's an orangey/mint flavor and really yummy. Here it is in Bulk (friends who order from this place vouch for the quality of their products, but I have not personally had experience with them) http://www.azurestandard.com/product.php?id=SW144 Apparently it is made from corn-cobs, so if you are corn-sensitive, this would be a no-go. Off to research some more....

Yes, it is fine in coffee and is a 1:1 sugar substitute. I'm very sensitive to splenda, etc and I can't taste a difference with Xylitol at all. I read that it is fine in baking, etc as well, but I haven't tried that yet. (It's so $$$!) And PURE xylitol is not supposed to be bad for your digestive system either like the other -tol sweeteners can be. We haven't had any ill effects from using a teaspoon here and there and chewing the gum. The nasal spray sounds awesome too and might be good for the us (the adults) but Pixie would freak out, I'm sure!

I saw in another thread (a few days ago) that Xylitol may help with strep. I have been meaning to look up specifics and finally remembered tonight. Here is what I found for those, like me, who weren't in the know: http://www.pubmedcentral.nih.gov/articlere...cgi?artid=90255 http://www.usc.edu/CSSF/History/2007/Projects/J1426.pdf I had a bag of Zellies pure Xylitol that I had been adding to my younger daughter's water (she has no enamel on front teeth due to antibiotic I was on while pregnant) and gum for myself. I've been adding about 2 tsp of the xylitol to Pixie's smoothies, but I am wondering if that really helps anything (maybe if she had strep in her gut?) and thinking maybe I should be letting her chew the gum too.

Hugs from me too. ((sigh)) I wish I knew what to tell you. I wish there were a way we could all really get together and vent and take a breather and maybe get some insight. Wouldnt' it be so great if we could just hit the "pause" button on our kids and all of us as parents gather in a room with coffee or whatever and sit around with Dr K, Dr Latimer and Dr Swedo (and a bunch of really good allergists, immunologists, psychologists, nutritionists, homeopaths, etc.) and just figure it all out? (((HUGS))) Manda

spd/sid sensory processing disorder / sensory integration disorder

Pixie is taking Augmentin (I forget the dosage off-hand). She was REALLY resistant to it at first, but once Dr. K told us we could mix it with food, we've had success. Pixiesdaddy (posting under Pixiesmommy's name).

According to Dr K (when we asked why IVIG instead of PEX,) IVIG has better results for presentations with psychiatric/behavioral components and PEX has better results for presentations where tics are the main component. Pixie's tics were one of the first physical symptoms we noticed, after fevers, however, I did not recognize certain aspects of her behavior as OCD behavior, so I think she actually had OCD first. The OCD did not present "typically" (like HAVING to open a window and close the door, etc) until after tics began. So... hard to say. She was diagnosed with things in this order by the "professionals" Bipolar SPD possible ADD Tourette's OCD PANDAS

She's on 250 mg of Augmentin/day (1 tsp in morning) that she has been REFUSING to take (not like her, but her taste is off since the IVIG and everything tastes different.) We hid it in a smoothie this morning and that seemed to work pretty well.

I use the term "nanny" loosely because I am a stay-at-home mom and she will be my "backup" so to speak, in times when I need to be hands-on with both kids. Thanks for the suggestions

We're interviewing special needs "nannies" to help us through Thanksgiving (tentatively) so that Dan can return to work. They are from care.com and the ones we have spoken with have things like: CPR /first aid cert exp. in dealing with various handicaps, including Tourette's, Autism, etc some are CNAs Thinking about questions I want to ask. Help me think! She would be here from 7-4 and would be helping Pixie with school or homework, helping with light housekeeping, watching and playing with both girls- my other daughter is almost 2- (though probably not at same time) and maybe doing things like helping us through breakfast and lunch, getting her to take her meds, etc Thanks!! Manda

I know about Saving Sammy and am so anxious to read it. Are there any other books that focus on PANDAS at all or even mention it? Thanks! Manda