peglem

Oh, you so have my prayers, honey! I have no words of wisdom.

I was hot ALL the time until recently. Never wore a jacket, always had a hot forehead (no fever, just lots of heat rising), could swim for hours without getting cold. I had never connected that to PANDAS, but if your son is feeling it too I would bet there's something there. Really? I've told doctor's that Allie "radiates heat" when they ask if she has a fever. Nobody knows how to read that symptom!

I'll echo Peglem here. It is ludicrous for this woman to suggest that they've never before encountered a kid who is "developmentally advanced" in most areas, but suffers some behavioral/emotional challenges! My guess is that this is less about PANDAS being an "unknown" than the district dragging its feet in admitting another child who needs services, since those services come at a cost to the district itself. If your DS is in a private setting now, is this at your sole cost (i.e., so the district isn't having to bear any of that at present)? If so, and the result of the IEP is that you're being told he has to remain there while they "observe" and perhaps render nominal services to him in that setting (an hour a day, I believe you said?), then I would counter that, as they've rendered the decision that your son cannot be appropriately accommodated within the district's available setting, then the district must cover the costs of your son remaining in an outside, private setting, rather than you! I've never encountered this with a child as young as yours, but I know that this is the case with older, school-age children: if they determine that the school is not an appropriate setting for meeting the kid's needs, then they have to fund the alternative setting. I know that the cost concern is not your primary one, but "hitting them where they live," by countering with financial concerns, may be a point of leverage for you, nonetheless. We have a similar issue in our district with the "head honcho:" the Director of Special Services. She seems to have very little understanding of a kid's actual needs and most of her "suggestions" or "ideas" for contending with issues in the classroom are absolute garbage. She, too, tries to railroad and steamroll the teaching staff and the parents into accepting some written language in the IEP we clearly disagree with. Luckily for us, she's lacking in self-confidence and much of the teaching staff is very experienced and protective of our DS, and they stand up to her on his behalf, preventing the whole thing from going completely off the rails. When I've complained about her to other knowledgeable people, they remind me that she's essentially a paper-pusher; she's there to make sure that all the legal angles are covered so that when the government conducts an audit of the Special Ed provisions and funding in the district, she can safely say that she crossed all her "t's" and dotted all her "i's." The kid's best interest is not her Number One goal because that's not what gives her job security; the District hired her and keeps her in that role because she protects the District's bottom line and its position with the government watchdogs. It sounds as though this woman you're dealing with is made of similar stuff. I'm glad you got it down to only 4 weeks of further "observation;" perhaps you can also request that this person who's coming in during that time to "assist and observe" be the one to help address any outbursts or issues your DS may have in their presence that would normally cause him to be removed from the classroom. If this person is going to be there for an hour per day, at least they can be responsible for helping him remain in the classroom for that hour! If I were in your shoes, I would also "confirm" that, as the District has determined that this private setting is currently the appropriate one for your DS, as opposed to the public school option, then the District will be paying the tuition for that month as well! Sorry to hear you're hitting this roadblock. Really, people should think about the kids in these instances, instead of what it takes to cover their own butts! Really good point! If the district is saying to send your child to private school- they have to pay for it.

I can identify with your sense of frustration. This is so maddening! I just want to make the point that the IEP should not be based upon the disorder, but on the child's needs. I'm sure they have experience with the needs your child has, even if they are unfamiliar with PANDAS. And as for how to do it when the needs fluctuate w/ flares- just make the accommodations "as needed". I'm so sorry this is happening to you and your child. IEP's can be so stressful.

Yes, he said he thinks the rifampin treatment is safer than the CT scan. I wonder what his colleagues believe to be the reason he wants to do this treatment? Do they think he is just trying to satisfy a mom who spends too much time on the internet? Do they honestly believe I would subject my child to this for nothing? The only alternative they offered was bactrim, which did not work. I feel like they are completely losing sight of my child's suffering, and worse, don't think she is worthy of the effort because she isn't smart enough, verbal enough, likely to become a "productive" member of society (pick one or make up your own). They are making judgements about the value of her life. Scary.

So, an update on this situation.... The bactrim did nothing at all-zip zilch. But, the prednisone did help- some- but she's not back to the OMG-its-so-nice- to-have-my-kiddo-back state that rifampin does for us. So Monday I took her in to see her pediatrician again, pleading that maybe we should be looking for why the rifampin helps so much- it must be killing something, and floated my slow-growing organism theory by him. He said that was a good strategy, and decided to do a TB test and get a chest x-ray to try to find evidence of something (hoping it would be easy) that would justify rifampin treatment to his colleagues. We did the x-ray today and brought her back in so he could check the TB skin test (though neg. results are likely anyway w/ immunocompromised patients and those who have recent pred. treatment). Well, no evidence. The radiologist said it was inconclusive, but could not rule out anything- a CT scan would be the next strep. So our darling pediatrician (I truly do not understand the kind of crap he's getting from his associates in the practice) leaves the exam room to try to make the case to one of his associates that we know the rifampin gives my daughter dramatic improvements and its reasonable to assume then, that there must be some microbial invasion that is responding to the treatment...and is it really worth the trouble of putting my daughter through all kinds of scans and procedures to find evidence of the source when we already know what treatment works. (like, duh, how insane is that?) Further, the fact that she is on monthly IVIG makes it impossible to do IgG testing to identify the microbe(s). I know this was discussed because I eavesdropped on the conversation, and I wanted to charge out in the hallway and scream at that woman when I heard the way she responded...She argued with him that the treatment has made any difference: "she acts just the same as every time I've seen her" and "is she even verbal?" This doctor has seen her exactly one time- before rifampin treatment and Allie is currently in a PANDAS flare- but she has NOT seen the difference the rifampin makes. And since when are the verbal more worthy of treatment than the nonverbal? (hey, she's a pediatrician- one would assume she treats many infants who are nonverbal!) And then there was more discussion about treatment "endpoint". I totally don't get that- when a patient has a chronic condition that you cannot cure (like many autoimmune diseases) you treat symptoms when there is a flare- why does there need to be an endpoint? The conversation finished with my ped asking her to help him determine an endpoint. He was clearly frustrated with her response (but was very properly professional). So then he came back in to talk to me about what she had said...and blessedly, at just the right moment, my daughter who had been laying on the exam table playing with travel mug lids (latest crippling obsession) suddenly rose up and smashed her head, very hard, into the wall. Her pediatrician was stunned...and said, "This is the worst I've seen her in a long time! She shouldn't have to go through this when we know how to help her. I'm not going to refuse her treatment just because of what everyone else thinks." And he said he'll get with her immunologist (who is sympathetic and will help) and he'll have a treatment protocol for her by Monday. Please, if you are the praying type of person- pray that God will bless this pediatrician and all our physicians who stick their necks out, suffering persecution, to help our children.

We've seen her. Last year when our Cunningham results were shown to our pediatrician, he called Dr. Cunningham about her study and she referred him to Dr. Latimer for treatment questions. She returned his call the same day and talked with him for a good while. But, the pediatrician could not go beyond abx and steroid treatment so he referred us to a rheumatologist who looked over the info and called both Dr.C and Dr.L, then declared himself unable to dx or deliver treatment (actually told us he would not risk his career ??), but referred us to Dr.L. We are in Arizona, so it was no easy endeavor for us to travel that far w/ our very severely affected daughter. But we did it. (her office visit, but not travel, was reimbursed by insurance since they did not have an in network physician w/ the expertise to deal with this). She recommended treatment, (IVIG) which the local immunologist has followed through on. We cannot see her regularly because of the distance, but she still will consult w/ our pediatrician when he calls her for help. (no charge) She is a very caring, compassionate, skilled physician, who, IMO, puts the health and well being of her patients before anything else. Wish we lived closer!

Yes, my PANDAS child was colonized- rifampin was an immense help!

My daughter had neither of those, but her metopic suture (runs from forehead to crown) closed early and at age 4 when she began to get really sick, it became a very prominent ridge. MRI and neurosurgeon said it wasn't a problem. (because, afterall, she's autistic)

My daughter has gotten a lot of help getting through some pretty tough times w/ diazepam (valium), and here recently we've tried ativan as well, which helps too, but is not as mild as the valium (which we've gone back to). I know that some people here have had bad reactions to benzos, but I think the only way to know is to give it a try. We do not use it chronically, although during a PANDAS flare up we'll give it a couple of times a day. I try to be careful to only use it in times of greatest need so we don't end up with withdrawal when she doesn't need it anymore. Its hard to know what to do when your child is begging for help and you can only say "wait." You might want to arrange a "safe" time to try it, when you can carefully observe her for reactions. We've been using valium for almost 5 years now. In the beginning the biggest problem we had was that the dose was too low, although appropriate for most at her weight- it just had no effect until it was increased substantially. I don't know if you've ever tried valerian root, but that might be a safer alternative that you could try 1st.

Oh, where are my manners? Welcome to our family. We will help you however we can!

This is a scary disorder, no doubt about it. Its never to late to start treatment. I believe (although I might have my geography mixed up) that Dr. Beth Latimer, in Bethesda, MD, is you're closest PANDAS "expert." She is a pediatric neurologist and very, very good. I placed the quotes on expert because even those doctors who have been treating PANDAS for a long time are still learning about it. But, if you are serious about getting treatment quickly from somebody who understands PANDAS better than most docs, she would be one you should consider going to see.

I answered quick, dramatic improvement w/abx, not because abx put my daughter into remission, but because zithromax did give her very noticeable improvement very quickly- w/in hours.

I'm so sorry, but yes, a relapse can be worse than before. Hope a change in abx helps!

Congratulations, Lymey!!

Discussed this with the pediatrician today. He did a TB test (will check on Wednesday afternoon) and ordered a chest x-ray. That should be fun- x-ray machines scare her.

We've used rifampin w/ augmentin for our PANDAS daughter, who, by all indications is a carrier. Couldn't test for strep because she has also been on constant abx, but I can tell you that the rifampin treatment brought about absolutely miraculous cessation of her worst PANDAS symptoms. Now, we may be dealing with something more than strep (we haven't really checked for anything else), because both times we've used it, our miracle faded after 3 months. I did discuss it with her pediatrician just this afternoon- looking for why rifampin is such a miracle, and he did a TB test and we're getting a chest x-ray as well. We can't go by blood tests for IgG because she gets IVIG every 4 weeks. We're hoping to find something to hang our hats on for rifampin treatment because he's been getting crap from his colleagues in the same practice for using this treatment w/o evidence of what he is treating. Never thought I'd be hoping my kid has a positive TB test!

I'm not sure what codes are used to get my daughter's IVIG because it is all handled through the doc's office. But I think its coded for immune deficiency.

If your son got the vaccine last October, does he even need another one? How long do those things protect for?

Eating disorders in such a young child can be caused by strep infection or post infectious autoimmunity. You might want to have your son checked for strep.

My take on this.... If your child has all the characteristics to qualify for an autism diagnosis, then they are autistic. I think the problem is that autism is considered a diagnosis at all- regardless of age of onset. Diagnostic criteria is just a description of symptoms...that's all. Just because a cause for those symptoms is discovered, doesn't change the fact that they do have or have had those symptoms. I'd like to see "autism" become a clue for doctors to look for underlying medical causation, instead of an excuse to withhold medical treatment.

Just my conjecture- if any of the lyme tests are looking at IgG...how could you trusts the results either way? The IgG in your child's blood sample would contain donor IgG. (you are the one who said your child gets IVIG every 21 days, right?)

Just my opinion, but I largely agree with you. My daughter has had gobs and gobs of therapy (OT, speech, ABA) over the years and most was largely ineffective. Additionally, I really think there is a danger of developing a sense of failure when the child is repeatedly asked to do things/practice things over and over again that they just are not capable of doing. That being said- once PANDAS recovery has begun, I think therapy can do a lot to help a child catch up more quickly with the things they were unable to develop while ill.

Not necessarily. There are many kids, both PANDAS and normal who do not get elevated ASO and AntiDnase titers, despite positive strep cultures. Mine for instance. An immunologist can run tests for immune deficiency. Low ASO and AntiDnase are basically meaningless unless you've been tracking levels over time- then lowered levels would indicate that the infection has been overcome. Rising levels over time indicate an infection is not being eradicated. Here is a link to Buster's FAQ about ASO and AntiDnase titers: http://www.latitudes.org/forums/index.php?showtopic=3756&st=0#entry29305

If you already have confirmed strep, you don't need to run titers to confirm strep. If his titers are still normal, it just means he didn't produce an immune reaction to those 2 kinds of strep exotoxins- for whatever reason. Those titers can confirm a recent past strep infection, but they are not the antibodies that are involved in the PANDAS autoimmune reaction. When Swedo studied PANDAS, the subject criteria (which has sort of become dx criteria) was either a positive culture OR elevated ASO/antiDnase (to show a strep association in cases where infection was missed).