peglem

Thank you! So, just sorta thinking out loud...My understanding is that Dr.T thinks that instead of producing the normal immune response to infection (which, ultimately, helps the body get rid of it), PANDAS kids immune systems do respond w/ antibodies to fight the infection, but do not keep the cross reactive ones in check? And also, w/o the normal immune response, the body does not fight the infection as effectively and parents/doctors miss the infection (which may go chronic) so the child doesn't get treatment. So, where does the low histamine piece fit into that? Is that where the typical symptoms (fever, etc)are not being triggered by histamine?

I just wanted to add that many times PANDAS kids will have strep w/o typical symptoms (normal immune response). If you see a flare in tics (or negative behaviors) you may want to check for strep at that time. My daughter had typical immune response to strep at an early age, and chronic strep problems. Sometime something changed- now her only symptoms are behavioral- and she continued w/ chronic strep after T&A. So, don't assume your child no longer has strep just because there is no sore, inflamed throat.

Okay, read through this thread, but still....What exactly is this theory?

Does anyone know where I can find his theory on the internet?

I know nothing about it all- just Allie's problem may be more that she is IgE deficient, so does not release enough histamine from mast cells. It just seems like nobody knows anything about this.

My daughter's "regular" prophylaxis is zithromax, 500mg every other day, starting w/ a 3 days straight loading dose. Zith has a long half life so I feel okay w/ this. But, we seem to have something that just hangs on and we still get flares. We use clinda for flares or sometimes something else. Whenever I try to stop prophylaxis, we get an immediate flare.

Sending up some prayers for your family!

We have had countless +strep tests over the years-really too many to even make a close guess- but we have only once had a mildly elevated ASO. I know that this is very common. You can find info on it in the Helpful Threads for PANDAS thread at the top of the forum main page (above the ad). This is a very common experience and more common in girls than boys.

Corinthdad, what are you doing for the profound iga deficiency. That is very serious if low enough, and needs to be treated. I would suggest considering a consult with Dr. B. in Darien, CT. He is an immunologist, treats PANDAS and PANDAS-like illnesses, but from an immunological perspective. He could take a look at the Iga, Igg4 and absent basophils, not to mention the rest. Also, mycoP can be a co-infection of lyme, and even though the blood tests were negative for lyme (they are notoriously inaccurate, unless you get the new one which requires a person to not be taking abx for several weeks), it might indicate lyme (not necessarily, but possibly.) It is very possible that it is the combination of all these infections together that triggered the symptoms, as many of us are finding that it's mulltiple infections, not just one that our children are suffering from. Many of us see more than one PANDAS/Lyme specialists, because they have their own areas of expertise (we see 4, for instance.) Good luck, and happy birthday to your daughter. How is IgA deficiency treated? Therapies to improve the immune system, as low IgA makes a person more prone to illness. If IgG is also low, then IVIG is typically used. Okay, I was hoping for specific treatments for raising IgA. But, one must be careful in giving IVIG to IgA deficient patients.

Corinthdad, what are you doing for the profound iga deficiency. That is very serious if low enough, and needs to be treated. I would suggest considering a consult with Dr. B. in Darien, CT. He is an immunologist, treats PANDAS and PANDAS-like illnesses, but from an immunological perspective. He could take a look at the Iga, Igg4 and absent basophils, not to mention the rest. Also, mycoP can be a co-infection of lyme, and even though the blood tests were negative for lyme (they are notoriously inaccurate, unless you get the new one which requires a person to not be taking abx for several weeks), it might indicate lyme (not necessarily, but possibly.) It is very possible that it is the combination of all these infections together that triggered the symptoms, as many of us are finding that it's mulltiple infections, not just one that our children are suffering from. Many of us see more than one PANDAS/Lyme specialists, because they have their own areas of expertise (we see 4, for instance.) Good luck, and happy birthday to your daughter. How is IgA deficiency treated?

Which is exactly what GPs and pediatricians would think if multiple patients came in complaining of the same symptoms as one another-some infection going around.

I'd like to thank you for sharing with us. As you know, we on this forum have been intensely interested in these cases, and perhaps a bit too speculative. Its gratifying to get real information, outside of the media filter. I pray that your daughter will finally get some healing!

Sorry about the doc problems, wish I couldn't relate. I just wanted to mention, if your child has been on azith- hearing loss is a rare side affect.

Contact Peglem. She is also in AZ and may be able to recommend docs. You can send her a PM. I PM'd you- check the upper right hand corner by your screen name.

Have I got the math wrong? Isn't 3 billion more than 50 million?

Oh, I did stuff like that all the time, too, but I was upside down, not the book. And I kind of thought it was playing around and experimenting- but now it seems so constant and w/ the squinting and covering her eyes with a pillow...I just don't know. School has noticed and will be trying some stuff w/ her-prism glasses?

Oh, yeah, Allie also looks at the reflections of things (she uses the shiny side of cd' or dvds)- but I'm realizing just now that this is a way to get the image upside down- especially she does this with the computer screen, since she can't turn the desktop upside down.

Over the last 4-5 months, my daughter has for periods of a week or 2 at a time, been looking at things upside down. Up until now, its been only w/ her portable dvd player and books, but this week I noticed in the stores she's been turning her back to things, dropping her head down to her chest and looking behind herself at the object she is looking at. The effect is that her eyes are upside down to look at the object. I thought when I first saw the upside down viewing of books and the dvd player, that maybe she was just playing with the images...but now, I don't know. It takes considerable effort to twist her upside down head around to see what's behind her. She squints ALOT, even when she's looking upside down. Have any of you seen anything like this with the vision? Could it be related to her sinus polyp? For @ the same period of time- she has been avoiding mirrors. She leaves the mirrored doors on the bathroom med chests open so they face the wall and you can't see the. I know the reasonable thing to do is take her for an eye exam- and I may try that if the problem continues after the polyp is taken care of. Eye exams are very, very difficult for Allie and they have not been able to actually test her vision.

Agree

Well, I live out here in AZ, have had one consult w/ a PANDAS expert (Dr.L in Bethesda), but have managed to sort of patch together a network of local physician's to treat my child. If I lived closer to an expert, it would be more feasible to see one on a regular basis. The one trip we did take, because of the severity of my child's issues, made it clear that we just could not do that on any kind of a regular basis. So, while the ideal would be to just go to a PANDAS expert, that is not always a real option. Here's how I've handled appointments with new specialists when I am unsure what their PANDAS stance is: I never say PANDAS or attempt to educate them about it. I tell them my child's history, what behaviors/symptoms I see triggered by strep (or whatever illness). I explain what treatments we've done and what effect they've had on symptoms. Then I ask for their expert opinions/advice. Sometimes I get some good ideas that I'd never thought of before suggestions for testing to investigate, sometimes they bring up PANDAS as a possibility, and sometimes I get a pretty good indication that this is not someone who will be helpful to us. We are very lucky to have a primary care physician for our daughter who is a great advocate for her w/ specialists and chooses very carefully who she gets referred to.

I think you may be on to something there. I kinda think if autoimmune disease were more prevalent in men, research into it would have started earlier in history. They seem to know way more about diabetes (both types) than they do other autoimmune disorders.

I know, I already replied, but I'm getting worked up over this! 1st of all, its not like he has to make a choice about which child to treat. Its not like he is limited in the number of abx scripts he can write. I just don't understand the logic at all- and I've had lots of experience with this attitude and the anger and frustration is only made worse by the fact that I just don't see any validity in what they say. What I hear is, "I'm giving up on your child because the degree of their illness is more than I want to deal with." Really, you're not asking for an organ transplant here (Although I'd be pretty livid if a child was denied that treatment because they aren't "normal"),just abx for a medical condition. When my daughter was 10, she had an eeg. This "top peds neuro" in the state reported back to me that her eeg was normal. When I got a copy of the eeg report, it most certainly was not normal- but this doc stated in his report that it was normal for "these kids."

Mayzoo, did you end up getting the MRI on Thurs, and how'd that go? We've actually gotten Allie off all psych meds. Maybe I'll try going off abx again after this polyp/cyst thing in her sinuses is taken care of. Its just that when she flares, its really, really bad- she and her family get pretty beat up, and I'm not just talking emotionally beat up. Eamom- the only imitrex we have is the nasal spray cartridge. When it does work, it does so very quickly.

Hmmm, rages here, from a very young age, have involved a lot of aggression, fight or flight kinds of things.

Ahhh, Lauren, I have many, many crappy doctor stories. I am surprised, though, that this doctor was so open about it. Really?!! What qualifies him to decide which children get relief from their misery? I'm sorry this happened. I hope he didn't say that in front of your son.