tpotter

Did you notice that Anne Curry cut off the psychiatrist when she started on her psychobabble, and ended the piece with a statement about how the girls just want doctors to contact them, and give them some ideas of what is going on? Good for her!

On the CBC, there were proteins measured. I don't know specifically which ones they are...maybe others who have actually gotten IVIG from Dr. L. can tell you. Also, I'll see if I can figure it out from his labs. But, she said she always checks to make sure the proteins are not elevated, and my DS's were quite elevated.

We saw Dr. L. recently, and she was looking over my DS's labwork. She said we have to stop IVIG for a longer period of time (which isn't a problem anyway, because insurance is now denying it,) because the proteins were really elevated. I said that it was because he had just had IVIG, and her response was that proteins need to be checked before each IVIG, because it can cause strokes. This isn't to scare people off from getting IVIG, it's just something to keep in mind.

I would include how he has improved. Document exactly what you just wrote above, and more. Also, if I'm not mistaken, I remember reading something on the forum last year that mentioned that if you can show that another company covers it for that condition, it might help. Does anyone remember that thread? It was specifically about United Healthcare covering it, and others that don't

Ours did, but with our insurance 1) you have to have titers drawn 2) technically you have to prove that the titers didn't improve after having a pneumonia vaccine 3) if your child can't have a pneumonia vaccine (like mine, because they've had reactions to vaccines in the past), you have to prove this, then hope they'll accept it 4) you have show that the strep pneumo deficiency has caused serious illness (I got all the doctor's notes from just 1/2 a year, and they had been there 8 - 9 times...all with strep, staph and/or some other bacterial infection AND I also showed attendance records at school, showing an average of 15 - 20 days per year absent due to illness. Basically, you need to ask your insurance company for a copy of their policy, then follow it completely.

I don't know if there is a plan to respond to the CANS article directly, but I have heard that the White Paper is coming out imminently.

Thank you for letting us know this, Vickie.

Neither of my children are at the present time, but I am on both daily, as well as doxycycline (twice a day), tindamax (every other week,) and Rifampin (M-F). I am being treated for mycoP. I think the doctor decides in individual cases how many often to give the child the abx. DS16 has never been able to decrease to less than daily use, and DS19 is now taking alternative stuff, because he is very prone to c-diff.

I totally agree. I would definitely also mention that PANS is much more common than what doctors originally thought, and bring up the point that there are at least 3 at your school alone (that's not "rare" in my book.) You might want to consider getting someone like your husband to edit the email, because no matter how good you are at writing, it's always good to get a 2nd opinion. A friend of mine convinced me to do that when a doctor spoke very rudely to me and my son, and I decided to respond by email (we were so dumbfounded by what he was saying that neither of us could speak for a good 10 minutes afterwards. The doctor actually apologized (didn't do anything else, but at least did apologize for what he had said, and mostly how he had said it. My suspicion is that she had no clue there would be people in the audience with such a "rare" disorder, and is going to be very embarrassed when she gets your email.

Low B-12 causes anemia. I'm not sure about what happens if B-12 is high. But, if she's positive for erlichiosis, you need to see a LLMD (lyme specialist,) because erlichiosis is a tick borne disease, and you won't get rid of the problems until you eliminate all infections. Lyme and co-infections are very difficult to treat, and you need to see someone who specializes in Lyme and co-infections...that would be an LLMD. If you go the Lyme forum on this site, there is a list of doctor's names, and such. Also, if you PM me I can send you more information. Even if strep or any other infection is present (which is possible,) it may be covered up by the lyme and/or co-infections, and it causes the immune system to get messed up...this is why he's calling it PANDAS. Many of us have children with strep, lyme, co-infections, and other disorders all at the same time. Good luck with this.

Yup, soon the $hit on Toast will hit the fan. Peuuu.

Now, here's the interesting thing...how many of the kids diagnosed with Autism and Asperger's Syndrome really have PANS? What your are describing...is sometimes considered for diagnosing Asperger's. My DS is one of those (many of his Aspeger's symptoms have abated or become somewhat better since starting treatment for PANS.

Did you notice he said that PANS is "very common"! Yeah!!!! I really, really like this guy.

Yes, and now that DS is 19, he is aware of it, particularly when we point it out. I like the comment someone made of: it sounds like a drunk who doesn't realize he's talking too loudly." We all get a good laugh out of it, and when it continues, I ask DS if he's feeling well. He always responds that he's not feeling that great (beginning of sinus infection, possible allergies, etc.) He can control it, typically, though, if it is pointed out, but he frequently get racing speech with it, too. Then again, it also lets me know he had caffeine to drink, and we're trying to get him off that stuff

I agree with Norcalmom about the IVIG study. They will do all the testing for free. If that doesn't work out, can you get an appointment with Dr. L (in MD.) She is a pediatric neurologist and PANDAS specialist. Sexually inappropriate behavior can be caused by temporal lobe seizures, so I would want to rule that out, but my guess is that most neurologists are going to blow you off and/or even if it does turn out to be a seizure, may not be epileptic, and then they don't know what to do. My DS has this exact situation, and since Dr. L. started treating him appropriately, the latter is no longer a problem. She does think it may be due to PANDAS, though.

My son tested positive for erlichiosis after 1 year of treatment for Lyme (we were pretty certain at that point that it really wasn't Lyme, until the test came back positive.) Then we found out that the "stretch marks" were really bartonella and he has symtpoms of babesia, too. I would assume that if you found this through Dr. B, that he told you to see an LLMD. I would highly recommend it if you aren't already, because tests can come back negative, and still be positive. You need a specialist to diagnose it.

They already know. And, at least one of the top PANDAS specialists tried to tell the NY State Dept of Health, and was brushed off!

OMG...how much worse can this get? Is there any way that we can get to these parents, besides writing followups to the articles? I know that if it was me, I would not be looking at the comments, because I barely read news articles online. Does anyone know anyone who knows one of the families?

Totally wonderful. What a great thing to do.

Are they suspecting Bipolar? That's what lithium is for, and we used it as well as 3 other meds to rule/out bipolar. disorder. It only made DS very nauseous (the others did nothing for him.) Using abx, steroids, and then treating for strep, lyme, bartonella and other co-infections, using PEX and IVIG has made my son so much better. Personally, I think your son's spike in behavior is due to the mono and strep, and who knows what else. My DS no longer takes any psychotropic meds, and he's way better for it.

I totally get where you're coming from. DS15 was sudden onset (went to bed, normal, and woke up the next day not ok.) He was 8 at the time. DS (now19) became suicidal at 15. He was hospitalized. At that time, and for years before, he was treated with psychotropic meds that did nothing for him. Prior to age 15, he was diagnosed first with ADHD (2nd grade), and Aspeger's 7th grade (although he was always Aspie-like.) Psych meds made him incredibly violent. We finally weaned him off. Because younger DS was finally seen by Dr. K, and he had written a paper on adult and adolescent PANDAS, we put 2 and 2 together, and figured out that he probably had PANDAS. Next 2 episodes of suicidal ideations were treated with abx, and we had instant (within hours) elimination of symptoms. We stumbled upon a first grade writing log that definitively showed massive changes in handwriting, and knew it dated back at least that far. We actually suspect it might have been either from the MMR vaccine that he had an allergic reaction to, or possibly even from birth. We now know that there's even lyme and bartonella invovled (positive tests), but don't know if that was pre- or post- strep onset. So, the reality is, that it's kind of hard to say that every child has a "sudden onset." Maybe my older DS did, but it just wasn't severe enough for us to notice.

Yes, we made a donation to them. They give grant money to families of kids to get diagnosis and treatment. Typically, the grant is $1,000. There's an application online.

Sounds like he hasn't changed much...didn't return my calls several years ago (when there were no other docs treating), and my local doc used the term: "abandonment." DS got very, very sick at that time (ended up hospitalized), and luckily that's when other docs names started to come across the forum, and we now we use multiple other doctors.

Unfortunately, I think the only way to really get down deep to the Lyme and co-infections is to throw the book at it. If you don't treat aggressiveily (think about what you said about his amazing recovery), you may actually do more harm. You're dealing with more than just infection here.....you're dealing with multiple infections and an autoimmune response. Personally, I am currently taking azithromycin, Augmentin XR, diflucan, Rifampin, Tindimax and Ciprofloxacin (I don't know what the probenicid is. The plaquenil is a cyst buster, and I suspect the tindamax and plaquanil or in place of each other. DS16 is currently taking Cephalexin, Bactrim, Rifampin, Tindamax, and weekly shots of bicillin (for the recurrent strep.) If the weekly shots don't work, we are going to IV abx, because he & I also got massive infections over the winter...lasted 2 months (him with strep, and exposed to mycoP, and my mycoP reared it's ugly head again.) So, yes, it's a lot of meds, and conventional docs don't get it, but I have found that we really don't have any choice, because we have to get this under control (we also see a holistic chiropractor, and get supplements, as well.) I don't think it's too aggressive.

I don't think they have it up publicly yet. I had spoken to Dr. C. at the infectious disease conference, and that's what they were shooting for. But, they are still in the process of raising money for the lab, and having to follow all the government regulations to a "t". If you are interested in getting more information, I would suggest you contact her. The money for the private lab to do the test publicly is not part of the University of Ok, so funding is different. Also, yes, you can still donate money to her OU lab through the OU Foundation (PANDAS research fund). She still needs funding to run her OU lab to do further research, as she is still working there, and much of her funding comes from private donations. I had heard (through the grapevine) that she may be starting to study Lyme. You might want to ask her that, too. Please let us know what you find out.