lfran

Okaaay. And this was from a blood draw when he was at a very low level. Sent it in then because we were drawing for other reasons and I really wanted to see his results. (And we just saw an infectious disease specialist last week who pretty much blew us off vis a vis PANDAS). He mostly presents with motor and some vocal tics. I wonder if there's a correlation. Do you guys think Dr. L would be interested in these levels? Or Buster? How do we start gathering and comparing all of our data? When we went to see Dr.L w/ a very high CamK (242), that number intrigued her, but she felt that she couldn't make treatment decisions based on that, however, she felt that the very elevated antiD2 was something that she could "hang her hat on" because it was very clear, study or not, that high antineuronal antibodies just should not be there and, so she could justify treatment based on that finding- so, I kind of see why the doc might be more interested in seeing those- as an indicator of autoimmunity.

Would you mind sharing what your "very high D2" levels were? My DS8 had a D2 level of 32,000, a cam K of 139 and everything else at the top of normal range. Thanks. When we went to see Dr.L w/ a very high CamK (242), that number intrigued her, but she felt that she couldn't make treatment decisions based on that, however, she felt that the very elevated antiD2 was something that she could "hang her hat on" because it was very clear, study or not, that high antineuronal antibodies just should not be there and, so she could justify treatment based on that finding- so, I kind of see why the doc might be more interested in seeing those- as an indicator of autoimmunity.

Is Dr. Mullen also a pediatrician? I would love to find a ped. who is also PANDAS literate. We are in So. Cal, so Burbank would be great. Do you recommend her? Thanks. (And anyone else, a recommendation for a PANDAS literate ped in Pasadena/Glendale/Burbank/Duarte.... would be awesome.) Thanks! I highly agree and be sure to leave a significant amount of time in between. I do not feel that supplements are a complete waste. Even if it turns out that, for example, the omega-3s didn't help with the pandas, it certainly is very good for your child. Many people with no health issues see these benefits and take omega-3s, probiotics, antioxidants, vitamins, etc. A Pandas doctor, Dr. Nancy Mullan, in Burbank CA would respectfully disagree with the doctor who states that supplements will not help with PANDAS. She feels strongly that natural remedies are far more effective. A lot of theories and opinions... leaves us in the middle without any studies to show us the way. Good luck.

I highly agree and be sure to leave a significant amount of time in between. I do not feel that supplements are a complete waste. Even if it turns out that, for example, the omega-3s didn't help with the pandas, it certainly is very good for your child. Many people with no health issues see these benefits and take omega-3s, probiotics, antioxidants, vitamins, etc. A Pandas doctor, Dr. Nancy Mullan, in Burbank CA would respectfully disagree with the doctor who states that supplements will not help with PANDAS. She feels strongly that natural remedies are far more effective. A lot of theories and opinions... leaves us in the middle without any studies to show us the way. Good luck.

That's wonderful. What part of the country are you in?

Thanks for both the answers! The pharmacists instructed me. Starting the new one the next day was the easiest. But she instructed me also on how to switch the same day. I needed to wait a certain amount of hours between the azithromycin and the augmentin. I think it was 10 hours. When I later asked the doctor he was not nearly as picky as the pharmacist. I would definitely not skip a day... My child can backslide quickly. May

How do you switch from one antibiotic to another. For instance, DS8 is on 500 mg azith a day, taken at bedtime. How do I switch him to Augmentin? Wait a day in between or just stop one and start the other the next day? I would want to start Augmentin in the morning, so I could monitor for any reaction. So, for instance, take azith at bedtime on Saturday and start Augmentin in am on Sunday? On Monday? Or ...? I'd appreciate advice from anyone with either personal or medical knowledge. Thanks!

Here's a sort of FAQ (well, it's not frequent, but it is a question!) and a couple of others. 1) My DS8 showed a total stop of symptoms after a MAJOR blood draw -- not a couple of tubes, but a lot, because a couple of different drs had ordered tests and they all added up. If PEX removes antibodies, how about the idea of therapeutic phlebotomy to also diminish the level of antibodies? Might have to be repeated every couple of months, but a lot less invasive and a lot less expensive than IVIG or Pex. 2) Also, there has been talk about whether probiotics with strep strains in them are okay. 3) What to do about asymptomatic family members who show high titres. Thanks!

We saw Dr. Gupta a few years ago and found him quite unhelpful. I would look elsewhere.

Have you considered the possibility that you might be lactose intolerant? I had diarrhea (non bloody) multiple times a day for years until I realized I was lactose intolerant (and there is lactose/dairy in many things, including bread, that you might not suspect). Now I take lactaid pills (available from the drugstore, over the counter) whenever I suspect dairy or lactose and I have diarrhea only a couple of times a year, when I misjudge. Definitely worth investigating -- since you can test yourself with a simple drugstore purchase. Also, hypothyroidism can present with constant and chronic fatigue as your only symptom. It did for me. You migth ask to get your thyroid tested-- you want to have TSH, free T3 and free T4 tested, as some people can have normal TSH but still be hypothyroid (and that's what the T3 and T4 will show). Make them tell you your results, not just normal or abnormal. A lot of family doctors think any TSH above a 4.0 is fine, but most patients (and some specialists) will disagree. I always fee lousy unless my TSH is 2.0 or below -- and that's true for a lot of other people. Hope this helps! -- Lfran

Hi all. We did a blood draw for Dr. C's test, but missed the Fedex cutff by minutes (a stupid timing issue that I won't go into here). They centrifuged it to serum for us. Does anyone know how to store it until tomorrow? Fridge? Freezer? Ice packs like they would be in for FedEx? Thanks! -- Lfran

If you guys have specific info about a texas doctor or who to see at Tx children's hospital, if you haven't already, would you post it to this post http://www.latitudes.org/forums/index.php?showtopic=8636 , where a 15 year old boy from Texas is trying to seek better treatment for himself. Thanks!

We contacted Dr. Trifiletti by phone and email and he was fantastic. Responded immediately, held a telephone consultation, and prescribed meds and lab tests that we could start right away. I have heard from others that he prefers meds over IVIG. I don't know if that's true. Since I don't want to go the IVIG route at this point, that was fine by me. Here is his contact info. He is in New Jersey, so "doable" from Cincinnati if needed. The Jersey Shore in summer is lovely (IMHO, but I'm from there!), if you need an excuse to go there. http://www.site.neurokidsr.us/ -- lfran

Just wanted to post that there are 4 of us in the family, and at least 3 of us have elevated DNASE and ASO levels. DS8 is PANDAS, with elevated DNASE (but usually normal ASO). DS6 has high DNASE and high ASO titers -- actually higher than DS8 (and negative cultures and no strep throat as far as we can tell, ever). Just found out that I also have somewhat elevated levels: ASO is 211 an DNASE is 240. DH results are pending. Thinking of testing that cat. Any thoughts out there? I'm guessing we should try to clear all of us. Thanks to worrieddad and others who posted about testing family members. Who would've thunk? lfran

Thanks. They were on his lip -- it was about a year ago and cleared up after few days. I was just wondering. -- lfran

Thanks. I will try both of those routes.

I can't seem to find a good picture of it, but does weeping, strep-related psoriasis look like yellow crusty blisters? My DS had that about the time of an outbreak Trying to identify what they might have been. Thanks. Deby/All, Deby since you have an appt on Monday, I thought you might want to read some things that I've been looking at. I have had mild psoriasis for 20+ years too. About 1 1/2 years ago, I got an infection on the elbow that had psoriasis. I didn't get on an antibiotic for a couple of days after the weepy infection started. Over night, this became a full blown head to toe body rash. About a week (?) after the rash started, my head broke out in what looked like a horrific case of dandruff. I have never had dandruff in my life. I found a psoriasis web site and started reading. Lo and behold, I learned of the strep connection (altho as usual there is mixed evidence..let me know if you want to read some of my saved info) and others with the body rashes and the scalp reaction. One particular Dr. from UCLA School of Medicine has some research that really caught my attention. Here is one excerpt from her work http://www3.interscience.wiley.com/journal...=1&SRETRY=0 Elevated phosphorylase kinase activity in psoriatic epidermis: correlation with increased phosphorylation and psoriatic activity I found another paper that talked about calmodulin being elevated (grossly) in the skin of people with psoriasis. http://www.springerlink.com/content/x6380hv01745h5j7/ Calmodulin antagonism inhibits human keratinocyte proliferation The other thing that really seems to stand out in regards to the scalp outbreak, it seems in people with psoriasis that antibodies to this YEASTare recognizing N acetylglucosamine, the same component of the strep wall that has been found to be recognized in PANDAS. http://www.ncbi.nlm.nih.gov/pmc/articles/P...ei0105-0079.pdf Antibodies from patients with Psoriasis recognize N acetylglucosamine terminals in glycoproteins from pityrosporum ovale Something else that has been pretty interesting, the psoriasis on my elbow (probably about 4 inches from elbow down toward wrist..so no small spot) is totally gone for the first time in all those years. It resolved with the other symptoms after the outbreak. I know that there was an attack on other connective tissue subsequent to that whole ordeal tho. I had some mild pitting on my fingernails and some arthritis type symptoms in other areas that I never had before. Also, some weird little bumps, mostly on my hands, and what looks like Keratosis pilaris on my legs at times. One of the worst periods where I noticed these symptoms was right around the time the boys were sick this past winter, and my oldest son started with some fairly bad gut issues. He was diagnosed with mild gastropherisis, and scope showed evidence of reflux. I know there's more but this is the 2nd time I'm trying to post this. The first one disappeared iinto thin air and I gotta run, but will post whatever else I think of later!

Someone just posted that at the AO conference, it was mentioned that high D2 levels were indicative of PANDAS. Is there any published reference for that, or a slide from the conference? That's my DS8's main elevation (twice normal) and I would like to show that to our docs. Thanks!

Just a thought about Cam Kinase II. It seems that is is associated with Calcium, and a lot of non-PANDAS TSers report that adding oral or topical magnesium helps their tics a lot. Could there be a connection, since Ca2+ and Mg2+ are similar cations? Is this something to explore re: elevated cam Kinase levels?

Just wanted to put in my 2 cents that we always see a flare up when DS8 has dental work and/or is losing a tooth. I have started asking for prophylactic antibiotics before even routine dental work now. Biggest flare ever was after a tooth extraction with no abx. I talked with our dentist, and he says that for people with antibody issues, he even avoids the metal rings and latex that he uses to isolate the tooth during a filling, as that can cut into the gum and cause a problem. Just thought I'd post this, for others to consider and to mention to your dentists. -- lfran

I talked with Kathy about this. She said that Dr. C's father is quite ill. I would imagine that that is taking a lot of her time. Kathy also said that you can basically compare your numbers with that of the normal mean in order to get a sense of where your child falls on the range, and look at where the cam Kinase falls on the scatter plot in the journal article that she sends out with the email results. I hope this helps. It has been two months for me. Still no report.

Thanks, Wendy. We live in LA and he weighs 82 pounds. I am working on getting him a higher dosage. Fascinating about the East Coast/West Coast issue. Although we are in Ca, I think he got his initial infection from a houseguest who was visiting from the midwest -- so that might add a wrinkle to the detective work. We're gonna keep trying. And trying. And trying. My husband and I getting tested tomorrow. == lfran

That's wonderful. We have had symptoms shut off suddenly two times. Once after a major blood draw and once, surprisingly, in the middle of a Chinese restaurant. The latter was really odd, because DS8 had been at a very high level for weeks and weeks and was very high level walking into the restaurant. Then, mid-meal, gone and stayed gone for a few weeks (no meds, no treatment, so hopefully yours will last much longer. == lfran

This is so very sad. I have never met her, but I have read so many positive comments about her from others on this forum. What a tragedy. OMG, it is a horrible thing. My heart goes out to her. She's been through so much already. Susan

Hi all. DS8, PANDAS, has now been on 250 azith for 8 days. I see no improvement -- in fact, I think things are getting worse. Is this part of the sawtooth. or should I be reassessing. We have a 30 day rx. However, just got back first-ever strep titres on non-PANDAS DS6, and they were quite elevated. So, there could be strep in the house that countering the antibiotics? Any thoughts? We have a referral to an infectious disease doc coming through -- hopefully that can help us clear the strep. We are using probiotics with the azith and see no signs of intestinal problems. But, could the azith be causing a yeast surge which is making symptoms worse? Also, any thoughts on lab results? DS8 has high DNASE, a cam Kinase of 139 and all other Cunningham tests are at the top of normal range, except the anti-Dopamine 2, which was twice normal range. Thanks! -- lfran