mama2alex

No, we haven't done anything with the strep carrier daughter except try to give her abx to get rid of it. It hadn't even crossed my mind because the PANDAS daughter is in such bad shape. We are seeing a naturopath for both girls and she is the one that said we should be focusing more on the carrier daughter. Can you tell me more about the immune workup for the carrier daughter? What would I do and what would I hope to learn? I think that is a good idea. I'm stressed out though because my PANDAS daughter is to return tomorrow. We sent her to my parents' house which is all the way across the country. I'm considering having her stay there. But I think that is hard on the mentality of a 4 year old as well... I was just thinking its possible your carrier daughter has an immune deficiency and that's why she can't get on top of the strep. I guess you'd need to see an immunologist. Maybe others can chime in on this because we haven't faced the carrier issue. It was just a thought.

Have you done an immune work-up on your strep carrier daughter to see if you can determine why her body can't get rid of it?

Not much to add as I was going to suggest the same thing. Our son was diagnosed with sensory integration disorder at age 5, and we worked with an OT for a year. I was looking for improvement in behaviors - opposition, focus, following directions, more than issues that affect hygiene. I did pick up some good ideas from them which have helped him some here and there. Given your situation, I would find a good OT who focuses on sensory issues and give it a try!

We first found a psychiatrist who believed in PANDAS, had worked with some PANDAS kids and was open to prescribing antibiotics. Since she's a medical doctor, she was able to prescribe antibiotics for my son. We've since moved on to a Lyme-literate doctor who can look in-depth at any/all underlying infections, not just prescribe the antibiotics we think might work.

There are other ways to contract Lyme than a tick bite. For a child, its possible to contract it from mom in utero. For adults, there is evidence that it can be sexually transmitted. I've heard on this forum that it can be transmitted by mosquitoes or fleas, but I've never read that elsewhere, so I don't know. But many people with Lyme don't remember being bitten by a tick and many never have a rash, so this doesn't rule it out. I think the best way to rule out Lyme and coinfections is to have her evaluated (not just tested) by a "Lyme-literate MD." They are the most experienced at doing the testing AND know what symptoms point toward which infections/problems. A good Lyme doc will take a comprehensive look at your daughter, including looking at possible mold exposure, viruses, food allergies, heavy metal toxicity, mycoplasma (which is very hard to test for), Lyme, Bartonella, Erlichia, Babesia, Strep.

Have you looked into Lyme Disease and coinfections? Dr. Joseph Burascano (a well-known Lyme doc) has developed a comprehensive "checklist" of symptoms to help determine whether someone should be evaluated for Lyme. Blurry vision, double vision and sensitivity to light are on the list. Of course these symptoms alone don't mean its Lyme, but it did catch my attention because these are not classic PANDAS symptoms. A number of parents and kids on this forum are turning up positive for Lyme as well as strep and mycoplasma, so it may be worth looking into.

Pardon my brain fog if you are being clear and I'm just not getting it, but I don't quite understand. When you give separation anxiety a 5, you mean its "very likely" a symptom of Lyme in children? I watched Dr. Corson's talk at the ILAD's conference today and from what she said, I think she would give the following ratings for likelihood that they CAN be caused by Lyme/coinfections: Separation Anxiety-5 Elevated CAM K- didn't discuss Handwriting deterioration-5 Significant history of positive strep rapids/cultures-4 Eating Disorder-5 ASO/DNAseB titer rise- didn't discuss Insomnia-5 Trichotillomania-didn't discuss, but OCD would get a 5 Livedo Reticulitis-5 Suicide attempts-5 Tumors-didn't discuss Dwarfism-didn't discuss

Ok, I see. I'm so sorry. That must have been beyond awful.

Thanks for this post! Does there happen to be one web site where you found all the PDFs? If so, could you tell us what it is or post a link to it?

Thanks. I did google him and saw that he was running a department at Columbia. I just didn't realize he was seeing patients in clinic. For some reason, I had the impression he was purely research focused. I read about him in Cure Unknown and have seen his name elsewhere, but I can't keep all these people straight! Also wanted to add that its my understanding that steroids aren't good for those with active Lyme because they suppress the immune system, just as they wouldn't be good for someone with an active strep infection, but that doesn't necessarily translate to them not "working" in those with Lyme. They can still reduce inflammation and thus help psychiatric symptoms caused by brain inflammation - this doesn't translate to that person not having Lyme disease, as a person with Lyme Disease can certainly have brain inflammation going on. In other words, I don't think a successful steroid burst rules out the possibility of Lyme Disease.

We've been through a similar process, as we requested a 504 Plan from the public elementary school last year (although we were not successful, and now have him in private school). I'm not sure I understand what they mean by "measurable goals" in this context. The purpose of an IEP is to make sure that a child with a "disability" receives the free and appropriate education to which he/she is entitled by law. As far as I understand, the school has to provide accomodations so that your child can receive that. It doesn't involve setting him up on a program where HE has to try to achieve goals! Now if they mean what are your goals for the IEP, then that's different. These were the three general goals we laid out for our son: (1) provide practical support to help get him to class on days when he is experiencing separation anxiety (especially during flare-ups), (2) minimize his incidence of school refusal/absence by ensuring he has a positive, healthy and safe experience at school, and (3) ensure that inappropriate behavior is addressed successfully and in ways that are not detrimental to his health or self-esteem. Then, with the help of his doctor, we laid out very specific accomodations that we thought would support these more general goals. The letter outlining all of this came directly from the doctor. I hope this is helpful! PM me if you would like a copy of the letter. Also, maybe you can ask your special ed advocate for his/her input on the school's request. It sounds strange to me -almost like they are trying to throw up a road block (but of course I tend to be a little suspicious after our experience ).

Sounds like your gut is telling you that you are on a path that is providing results. If Dr. Fallon has run labs for, and evaluated for, all the possibilites concerning your son -- then perhaps you feel like you can set these possibilities aside. I do not know the particulars, but it sounds like he is telling you that none of these infections might play a role (again, I'm just assuming that they were all tested and evaluated for). The great thing for all of us is, we can always re-evaluate and adjust in the future based on new research, new symptoms, new knowledge, etc. There are not too many here who have traveled a straight and narrow path in healing our children. Sincerely wish your family the best. Mary I agree with this. If you are seeing improvement, and Dr. Fallon did not see any improvement with the IV antibiotics, then you are probably on the right course for now. If you don't see full healing, or he relapses, then maybe you get a second opinion on the Lyme/coinfections. I know all about the worrying - I've been doing it for a year and a half. Hang in there, trust your instincts, and don't be afraid to change course if you're not getting the results you want. By the way, I have a question about Dr. Fallon. I thought he was a psychiatrist and a researcher. Do I have this wrong - is he a treating LLMD? I'm on the west coast, so not as familiar with the docs on the east coast.

Hi, I kind of have a question here.I'm thinking if the lyme test was negative, and you are saying that if your child's symptoms are not resolving, to ask opinion again....why would you assume it is lyme? I am guessing this parent has a child initially diagnosed with Pandas, or at least tourettes or something else? I'm just wondering why you would think it must be lyme, no matter what the results of testing is. This is not helpful Faith.

Thanks for sharing this great news! I know what a relief it is to be in a school that wants to help, as our new school has been amazingly supportive - a huge contrast to our experience at the neighborhood school last year. All of us are feeling a tremendous sense of relief at being supported like this! They suggested an IEP meeting 3 weeks into school and sat down with me 2 days later. His teacher and the special ed team all read the PANDAS articles we provided, and asked me questions! They are making it a top priority to notify me of any strep cases. I have various people available to assist me when he's very anxious and refusing to go into school - their goal is to get him into class as often as possible, but they are understanding when he has a hard time. They are brainstorming like crazy to come up with ideas to motivate him to get to class and feel comfortable. His teacher never complains when he's 2 or 3 hours late - she's just glad he got there! They are ready with stickerless library books if his sticker aversion becomes bad again. They are watching what he eats as much as possible (he's on a no refined sugar diet). They have an OT room where he can go if he needs a sensory break. The list goes on - its incredible. Again, I'm so happy for you - it's really devastating when the school is unsupportive on top of everything else.

Pamela Weintraub, auther of Cure Unknown is talking next!

Thanks! Watching now...

Steph, I'm so sorry you are dealing with this. Our son has had occasional rages and these were absolutely the hardest thing to deal with. I don't have a lot of advice about how to parent through them. I just hung on for dear life and tried to keep him/myself safe, because it often involved threats of killing himself, threatening to jump out of the car, grabbing knives, and running into the street in front of our house. There have also been a few times when he hit or threatened me with a knife or fireplace tool. We have had two high dose IVIG's now (Dec '09 and July '10) and are now working with a Lyme-literate doctor to treat Bartonella and determine whether he has Lyme, so things are much better for us and he hasn't had a rage in months. But if it ever happens again, I will be referring back to this thread for all the great ideas others have given! What I wanted to address is your younger son. Our son is an only child, but I grew up with a brother (6 yrs older) who started having rages at 14 (and clearly had problems before that), so my childhood was extremely stressful and scary at times. His behavior was so out of control that he had to be hospitalized several times and I lost two best friends (one in 5th and one in 8th grade) when their parents realized what was going on. I have much more empathy for my parents and what they were going through now, and obviously I see it through different eyes. But I can see in retropect the things they could have done better. I was the "good" child who got good grades, always behaved, wanted to please them, etc. But I often felt that they didn't acknowledge my successes and were so busy "dealing" with my brother, that I was forgotten. I was also confused, scared and angry, but never expressed it until I became a teenager, at which point I became depressed, isolated, and blew my GPA, eliminating my chances of going to a top college. They never talked to me separately about what was happening (I don't think they were emotionally able to as we were often in crisis mode). I would recommend you start a conversation with your daughter about what's happening and talk with her openly on an ongoing basis. I would ask her how she feels when her brother is raging and brainstorm on things you/she can do at those times to help her feel safer/more in control/or whatever else she needs when things are bad. Try to find time to get her out of the house for one-on-one time with you - let her choose an activity that's special to her, giving her some control. And, if you can afford it, get her into a good play therapist who can provide her with some support, give her an opportunity to express her feelings about what's happening, whether through play or talking, and provide you with advice on how best to support her. We have our son (10 years old) working with a play therapist, and this is a very non-threatening way for kids deal with their feelings. He would shut down if anyone tried to ask him about "how he felt" but he's developing an easy relationship with the therapist, based on playing (and she has a therapy dog, which helps a lot too). Also, I occasionally meet with her and she suggests great strategies that I never would have thought of on my own. I do think the "typical" siblings suffer more than parents know and, though its hard to do during the chaos, need help too.

We aren't doing the IV's, but have our son on transdermal glutathione now. He was taking the liquid, which is cheaper, but he hated the taste and I was worried about absorbtion. We added this based on testing - he was quite low. I agree that every child with PANDAS/PITAND symptoms should be tested for glutathione levels. We took our son off glutathione (and a number of other supplements, although not all) just after he turned 8 and less than a year later he had PANDAS. I'll never know what the correlation is, but I'm suspicious.

Please don't let that doctor talk you into accepting a TS, ADHD, OCD diagnosis without adequate testing! I would recommend finding a Lyme-literate doctor who can look into a number of possible underlying infections which may be triggering your son's issues. Sounds like you already know herpes is a problem, but they will do compprehensive virus testing, look at molds, allergies, vitamin/mineral deficiencies, strep, leaky gut, mycoplasma, Lyme, Babesia, Bartonella, Erlichia, etc. A CBC doesn't rule out anything. They can look at the whole picture and then put him on the right medicines to help get him physically and mentally healthy. And with all his health issues, you should definitely have him tested for immune deficiencies. Just from what you posted, it sounds like YOU are on the right track and your pediatrician is on the WRONG track. "Just accept it" isn't acceptable in my book. You can contact ILADS for Lyme-literate doctors in your area or post on the PANDAS and Lyme forums here to get recommendations from forum members.

Great update! It sounds like you're on the right track. I hope this is the answer for your son. Keep us posted on his progress. Just wondering, what is the bicillin shot for? In what way did it make your son feel better?

It does sound suspicious for Lyme, and sounds like you know not to rely on the Elisa for any answers. Have you checked her for co-infections yet? We are in CA, so I can't recommend a doctor in MA. Have you asked for a doctor recommendation on the PANDAS forum - seems like there are more people reading it at any given time, and many are looking into Lyme.

Thanks for posting the update! I'm hoping this isn't your last post to the PANDAS/PITAND forum. The info you've posted has helped a lot of people find the root cause of their children's issues, and the link between PANDAS/strep and Lyme Disease needs to be discussed. I understand why LD and PANDAS were separated into two forums, but they should not be mutually exclusive conversations.

Thanks! I too had wanted to see this, but was floored by the price of buying the movie, so I forgot about it. I just checked and was able to "Save" it in my Netflix queue, but it isn't available yet and doesn't say when it will be.

Here's the thread on bleach baths from earlier this year: http://www.latitudes.org/forums/index.php?showtopic=7031&hl=bleach&st=0

I tested negative on the Igenex test (with two "IND" bands) 5 years ago and did not pursue any additional testing. My son tested negative for Lyme a year ago (with two Lyme-specific bands "IND" plus a couple of others), but postive for Bartonella (IgG). The doctor who did these tests felt that we both have Lyme, but it just wasn't showing up on the tests. Given both of our symptoms over the years and my undiagnosed rash some years ago, we are now looking into it further with a new LLMD(wanted a second opinion). The more I read about Lyme, the more suspicious I am that we both have it.