peglem

If these titers are elevated it is usually evidence of a recent strep infection, and yes, it can be used as a baseline measure for comparing future levels. The tricky thing is though, that if these titers are low it does NOT mean that there hasn't been a recent strep infection...I assume Dr. K knows this, but most doctors do not and misinterpret the lab results. I don't know the risk/safety comparison of the 2, but IVIG is very, very expensive, so if you get good results with steroid burst the thinking (for some) is why not treat with the less expensive and less invasive method, as long as it is effective. I don't have information on the scans, but I do have an opinion. Scans are another one of those procedures that are very expensive, and unlikely to prove or disprove PANDAS, but if treatment for PANDAS does not seem to be working, I'd do the scans to check for/rule out structural problems.

This is the one I ordered and it has worked fine for us. I haven't tried any others so don't have anything to compare it to. http://www.medicaldisposables.us/product.p...at=6&page=1

What I was thinking with immunology or rheumatology was that maybe they could detect some sort of immune disorder or deficiency, not PANDAS, that would justify IVIG. That way, you could still get the treatment, regardless of what they want to call the disorder he is being treated for.

You sure are in a frustrating position. I know you've been through a lot and have been pursuing help for your child for a long time and keep coming up empty. I know, for me, Dr. K and Dr. Latimer are out of the question, they are too far away(I'm in AZ) and I just cannot afford $300.00 for a phone consult that likely will not lead to any treatment because why would local doctors be willing to respect Dr. K's advice over local specialists (well respected ones)? Forgive me for not remembering, but I wondered if you have seen an immunologist or rheumatologist? It seems like if you could maybe approach this from a more mainstream direction, you might wind up with the same treatment- y'know, a rose by any name...

Cunningham does not check for ASO or AntiDnase titers. She checks Calcium/calmodulin kinaseII levels and 5 antineuronal antibodies.

I wondered about the connection to rheumatic fever. I don't think they would show up if I took a picture. Should I put a call into the Ped Rheumatologist's office or call her regular Ped? I'd go to whoever I could get to the quickest...get them medically documented.

Last year my daughter, who was already underweight was dropping pounds on a regular basis. Somebody on an autism forum suggested supplementing zinc to increase appetite and it did work for her. She's still on the slim side but not unhealthy scrawny like she was.

My daughter had a tonsillectomy in response to chronic strep with PANDAS. The strep (and PANDAS) came right back. She does have fewer sinus problems though. How old is your little girl? How long ago did you have the tonsillectomy and was she treated with antibiotics for some time after the surgery? My daughter is 14. She had her tonsils out @ 3 years ago. After the surgery she was on, I think, 14 days of amoxicillan. But she wasn't checked for strep for easily 6 weeks after surgery...nobody wanted to swab her healing throat, and it was assumed that she would not get anymore strep infections. About 2 months after the surgery, she was in really bad shape, PANDAS-wise and was put back on antibiotics. It took another 3 months or so to finally get prophylactic Abx.

I was kicked out of a psychiatrists office once (well, politely shown the door) because I had weaned my child off risperdal and wanted to try an off label med (that my daughter had been on quite safely in the past.) The psych kinda freaked out with all these reasons why she couldn't possibly consider it (instead of listening to my reasoning) and then smiled and said she was just being honest with me. I told her she was being very honest, but not at all helpful...that's when she showed me to the door. Hey, I was only being honest right back at her! The thing is, if you get a really good psychiatrist, they can be very helpful. I nearly gave up finding a good one though...that's hard to do.

My daughter had a tonsillectomy in response to chronic strep with PANDAS. The strep (and PANDAS) came right back. She does have fewer sinus problems though.

Suppose you broke your leg and when you go to the doctor, instead of an xray, the doctor diagnoses "bruise & swelling syndrome." He advises you that people with this syndrome often have trouble walking and that's to be expected. He gives you some morphine to treat it. That's exactly what's happening with dx's like autism and bipolar....those are just labeling the symptoms and calling it a dx, without seeking an underlying cause. Its not that my daughter is misdiagnosed with autism, just that autism is only labeling her symptoms w/o seeking to find and treat an underlying cause.

Allie received the pneumovax. I know that I did a search on it before allowing her to receive it and it contained no aluminum.

I thought it would be a bad idea to vaccinate for strep in PANDAS kid?? Yeah, I asked about that....was told its not the same kind of strep. I don't think there is a vaccine to strep A or B. I remember checking out the vaccine online very carefully back then before I decided it was safe enough. My daughter had chronic strep at the time to, and they would not give it when she had an infection, so I'd schedule the vax, have her checked the day before, then call and reschedule for the day after abx course would be complete. I don't think it brought on an exacerbation for her, although she did have chronic strep at the time, so I may not have known if it was strep or vax causing reaction.

Generally, the streptococcus pneumonia test is run the 1st time to get a baseline read. Technically it isn't a failure because there has been no immunization- this test and the pneumovax are used to test the immune response. Once they have baseline titers, they usually administer the pneumovax and after 2-4 weeks, retest for titers to see if there was an immune response to the vaccine. When my daughter did this she showed no response to the pneumovax the 1st time. She was revaxinated and did show an adequate immune response to the 2nd vax.

I googled cam kinase II autoimmunity and found many things that I couldn't make much sense out of, but this one seems a little more understandable to me...its about the role of camKII in the maturation of antigen presenting cells in the immune system. It seems significant to me, but can't get a good enough picture in my head for complete understanding: http://www.jleukbio.org/cgi/content/full/78/6/1397 What does anybody who understands better than me, think?

You might try posting this on the PANDAS board as well. First and foremost, I'd be trying to find out why the strep keeps coming back- is it a problem of re-exposure, or is it never really going away and just re emerging. (is their an immune system problem?) It is not uncommon for PANDAS kids to have strep with only behavioral symptoms, and not show the classic signs of infection. I'm not sure if you know all the little "extras" that come with PANDAS...things that are not diagnostic for it, but seem to be common among sufferers. -changes in handwriting (messier) -changes in emotional reactions: often exaggerated emotional responses relative to the triggering event -sometimes OCD can be very subtle, it may look like he is just hyperfocussed on something -new, or unreasonable fears -problems sleeping -sensory issues: bothered by lights, sounds, certain fabrics- or a combination of sensory stimuli causes "overload' Most PANDAS parents can see (in hindsight) that there were little things in the past that were PANDAS sx, but not severe enough to cause the alarm that later led them to discover the PANDAS.

We use CLO too. We ran out a couple of weeks ago and I noticed that Allie started having eye problems-very sensitive to light, squinting and rubbing her eyes a lot. When I added the CLO back in the eye problems went away the first day she was back on it.

Trying to find implications of elevated camK levels from Cunningham study, I discovered that it is involved in the fight or flight response (at least as far as elevated heart rate) and so began looking for methods of lowering CamK levels....I came up empty on that. Any ideas or research for how those levels can be reduced?

Way back when my daughter was 4 and 5 years old, she had episodes of limping and once a couple of days where she couldn't walk. The doctors found nothing that could cause it, no bruising, no swelling and nothing on xrays. It always resolved in a couple of days. Its one of the things that in hindsight, leads me to believe that PANDAS started years before we found out what it was.

My doctor did not order the blood draw for the Cunningham study. I asked the lab to draw the blood when I had an order for some other labs the dr. wanted done. So the lab order was just for the tests her regular doctor wanted done. But, the lab will only be drawing blood for the Cunningham study, not performing any tests on that blood. When I checked into the lab, I showed them the email instuctions and study info that I had and just asked them if they could fill those other vials while they had her "tapped." Personally, I think it helped that the phlebotomist at that lab is familiar with us (my daughter is a VERY difficult draw, so when we find someone who can do her draws, we stick with them) and offered to spin them for us as well.

I don't know when my daughter's PANDAS started, but I know it was untreated for many years before we recognized what it was. Much of her story is hindsight. At age 3 she was dx'd autistic. Rages and Self Injurious Behavior (SIB) began when she was @18 months old. As long as I can remember she had frequent ear and sinus infections. Once the autism dx was applied, almost all infections were considered allergies (because, as I heard so many times, "these kids" are known to have lots of allergies). Sometimes she would be put on antibiotics, and incidences of SIB decreased. We attributed this to her feeling better and thus being less irritable. This went on for years. At age 7 or 8, she began a slow regression in all skill areas, lost what little speech had developed, had a steady increase in SIB. I remember periods of time when she would rage for hours at a time, with small breaks in between. All these years she had constant sleep issues (OMG, it was soooo exhausting) and eating issues. From age 4 to 10 she was casien/gluten free...we thought it was helping, but now, I just think we were so desperate for something to help, that we really fooled ourselves into seeing what was not there. At age 10, we got a new pediatrician because of a change of insurance companies at work. By this time we had pretty much given up on the medical community who were so eager to shrug off everything as autism related and almost never did anything to help+ we were so, so tired, physically, mentally, emotionally. A series of things came together at the same time we got the new pediatrician- I had heard of PANDAS by that time, but since she'd never been dx'd with strep thought of it as a remote possibility. He asked if we knew what was causing her autism....I unloaded all my frustrations with the medical community at large, explaining to him that nobody we'd ever seen was interested in exploring causation and that, since he asked, I'd sure appreciate some help with that. I requested a strep test, on the outside chance that it was PANDAS (he'd vaguely heard of it, but didn't disbelieve, because he knew strep could cause issues with other organs). He agreed to do the test, which he was pretty sure would rule out strep as a problem-she had no classic symptoms. The rapid tests showed positive almost immediately....he was amazed, that got his attention. He prescribed 14 days of Keflex...she got a lot better. A few days after finishing the antibiotics, the behaviors came back and we returned. The rapid test showed a faint positive (I overheard him discussing with the nurse outside the exam room- she thought it was positive, he thought it was impossible after 2 weeks on keflex). The swab was sent for a culture, which did come back negative. A few months later she returned to school after summer vacation. Behaviors returned bigtime, but we kept thinking it was behavioral and autism...Finally, her teacher suggested that maybe she's sick (even though there were no symptoms of that) so I took her back to the doctor and she tested positive for strep, behaviors subsided with antibiotics. For 18 months the pattern of behaviors/+strep/abx showed pretty clearly that behaviors were linked to +strep tests. The strep always came back a few days after the completion of abx. Then her tonsils were removed, but the strep came back....a few months and several specialists later, she was finally given prophylactic penVK....the strep came back on that. So, she was given a course of zith which evoked great improvements, which disappeared when the penVK was resumed. So she was switched to prophylactic zith. I can't say how dangerous untreated PANDAS is for your child. Maybe it would be enough to very quickly treat any and all infections with antibiotics. In my child's case, I wonder if her rather severe autism is the result of PANDAS striking in infancy, disrupting her development at a very early age. I can't help but see very striking parallels between what happens to older kids who develop PANDAS and autism. In autism, tics and OCD are called self stimulatory behavior...The only difference is older kids have already undergone early childhood development when this strikes, so they are not as developmentally impaired as my child. If I knew then, what I know now.... I hate the idea of abx for life....I don't see another way. And yet, maybe things will not go this far with your child, I'd just say the potential is there. If you don't treat, at least watch very, very closely. I'm not trying to scare you into treatment, just sharing my experience so you can make an informed decision.

Zithromax has anti inflammatory properties, so while it does not kill viruses, it will still treat inflammation, whatever the cause.

Here in AZ we have the philosophical exemption. I've never had to give a reason, just check the box that says philosophical and sign that I agree to keep my child out of school if there is an outbreak of diseases she has not been immunized for.

I'd go for the zith. It's the only abx that worked for my child.

My child' s doctors office does not do blood draws or I would have had it done there. If they'll do it for you, that's what I'd do. I was very nervous about asking the lab to draw blood w/o a lab order, which is why I tagged it to a blood draw that was physician ordered. My daughter is on prophylactic zith, but she is on a 5days on/7days off schedule. I think I kept her on the off cycle for an extra day until I could do the draw. 7th day was on sat., so waited til Monday to do the test and gave her the zith after.) I wonder too if all titers need to show positivity, or just the CamKinase to indicate PANDAS.