norcalmom

wondering if kids with mycoplasma are pandas or pitand kids? ds is pitand. I beleive that his very first onset was when he was 6 years old or so, after having pnemonia...fast forward 4 years, full blown pandas exacerbations..but no strep dx, but do believe un dx case of perianal sterp (which appearred to be a very minor rash I treated at home with antibiotic ointment) Do those of you with a myco-p dx have kids that react to everything?

I bought a bottle for myself. I think I may be a carrier. I've had my sinuses swabbed (negative) and two throat cultures - one of the rapids came up positive, but the culture was negative. I've never had strep in my life, although my sister was contantly sick with it when we were growing up. And, I have a very minor post nasal drip - that went away on antibiotics (when I came up pos on rapid they gave me scrip, and then when culture was neg, they called and said don't take them) (then I re-did the rapid and the culture to make double sure, and added the sinus too). when my son was going thru IVIG, I just decided better safe than sorry and took the scrip. Nasal drip disappeared. Maybe I'm jsut paranoid and feel better when I'm doing something to help my son...I dunno, but do know that my sinuses were great for 6 weeks or so, and now are starting up again. the scrip was only for 2 weeks...but the effect lasted well beyond. Anyhow, my question is this - the bottle says only to take for two weeks. Does anyone know why? Any know side effects from taking long term? I've read that on its own it can burn your mouth - can it casue damage to stomach or gut? Mine is capsule form in olive oil.

Is this a measure of dopamine levels?? I've always been a little confused about that...what exactly does ani-dopamine antibodies level mean..is it a measurement of antibodies that is attaching to (attacking) dopamine...(in which case more dopamine would be a good thing because these "bad" antibodies are inhibiting what dopamine should be doing?) Or the opposite....that that much auto antibody indicates too much dopamine in the first place? We don't have have high D1 or D2, (at least not when we took the cunningham test - which was NOT in exacerbation) but did have very high anitlysoganglioside.

yes..hirge, if you are still on this thread...it got way off course from your original post. thank you for posting about your meeting, and hope to see some updates on how your daughter is soon!

yes, I agree. Use as little as possible, and for short term (for me that means a few days). Also, there is a least one member of the forum who has had hearing loss (I'm not sure if it is permanent) do to the use of ibuprophin and azithromycin.

well, you might have to go a distance. I'd wait on the cunningham tests. It took us 3 docs to find one that would give us a dx of pandas and prescription - but I knew that last doctor was versed in pandas before we saw her. I got in contact with the person who started the www.pandasnetwork.com page, who so happened to live near me, so I asked her where she went. This dr is a phychiatrist, and has a speciality working with OCD kids. So, it was nice that she could differentiate between what she sees in her typical OCD practice and what was happening with my son. In the interum, I know that several people on the board us natual antibiotics, sold over the counter at healthfood stores. Oil of oregano is one, there are a couple others. You could look into that when your scrip runs out.

Definately sounds like an exacerbation to me. Many on this forum are on long term antibiotics. They don't prevent exacerbation, but in our case helped them not to be as bad. And, they should keep the strep away as well. We are on azithromycin, different from amox., and have been for a year. Mostly at treatment strength, but for a few months we we on prophylactic dose. Let us know how he's doing. Have you tried advil/motrin? Not for long term obviously, but might help for a couple days if things are really bad. on another note, I've always been fascinated by all religions, and the common threads between them -like the need for ritual, repitition, fasting and food restictions. There is a book called Devil in the Details. A good read. woman with SEVERE OCD, who seeks out (as a teen) and finds comfort in the most extreme orthodox religion she can. No one in her family is religious. Its fascinating, regardless of what faith you are, and disturbingly funny. At least it was funny when I read it, becuase it was before ds had pandas. Probably wouldn't be as funny now!

or, one doctor trying to do too much. when we consulted with our last dr. for ivig, he said, yes we needed it, he but didn't want to do it because he was so busy, and doing the ivig was not where his time was best spent.. He wanted us to shake the local trees to see if we could find someone local to do the ivig. We are half way cross the country from him, so we wanted to find someone closer too. He said he would consult if we could find someone locally. We couldn't find anyone. so, if it is the same doctor, I know he would be more than happy to have some other doctors take some of his patients..which is why he probably felt you were being taken care of, but still recognized that you were a pandas case and belonged in that file. We are also having trouble with follow up - we are so far away, not a high priority, when kids is crisis are banging on the door. no one is infallible. Drs can make errors, and it is a difficult diagnosis. I'm sorry you had to go through that. This disease is tough enough as it is.

I think if you already have a positve strep, lyme, or mycoplasma association, or a clear immune dificiency disorder, then you don't need it. We didn't. It gave me peace of mind that I needed before spending $16,000(or more) on IVIG and most importantly, taking the risks associated with IVIG. I wanted to make sure I doing right thing by manipulating his immune system. It proved to me that his immune system wasn't functioning properly.

SJ - thanks for that info on the dissociative disorders. Its so hard to tell what is a symptom of this disease and what is "normal" kid stuff. momcap - have you seen an increase in any other symptoms? I know our ds would have all his symtoms increase within a few days of each other. Each symtom induvidually, didn't mean much because most of them were close to subclinical (except the tic)..like talking about death. We thought he was having a delayed reaction to his grandfather dying several months before. Or wetting his bed ..isn't it normal for little boys to do this sometime?..or being extremely irritable...he's a preteenager - he's gonna bicker with his teen sister and drive each other nuts... can't stand to see or hear me swallow - he's quirky and hasn't been sleeping because of nightmares and insomnia. It wasn't one thing that led us to believe he had pandas, it was the occurrance of a number of symptoms at around the same time. Eventually some never went away. And could not be considered sub-clinical (he started looking into the sun..nothing normal about that one!). Usually our first symtom would be bed wetting and or insomnia/nightmares. That would usually signal he was heading into a 4 week period or exacerbation and some kind of virus.(virus ususally came after the bed wetting/ or around same time). The bed wetting wasn't every night. less than half the nights..but in the beginning might be every night for 5 days or so.

ok - good, glad you will still be on the forums. I will pm you when I am heading north for appoint w/ drs H, or associates. take care!

I don't know about the lyme symptoms, but do know that now that my ds knows what it is like to feel better, he can tell when he feels "pandas-y". He also had a halllucination once in the middle of an exacerbation - and tons of nightmares and sleep issues during that time. I have read other accounts of phychosis in extreme exacerbation. DS was also obsessed with death, and what happens after we die. He kept bringing conversations round to it, and almost all his nightmares involved it. However, I can realte to what you child is saying. At his age I was debating if the world was real. How do I know you are real? All I can know, is in my own head. I theorized that the entire world was just a set up (a test), put there by God to see how I would act, and at the end of it (or at any point) god would decide if I was worthy of heaven or ###### based upon how I reacted to his test. Talk with him. If he is having some sort of philisphical debate about reality or coming to terms with what he can for sure know (which includes god) he's fine. Philosphers have been debating the same thing for centuries, so your child is not alone. It reminded me of something I read in college that struck a chord with me for the same reason your post did - it reminded me of when I was that age. I cut an pasted an description below. Perhaps Pascal's solution to the question will help your son with his. Did you get your cunninghams's test yet? I saw you post a while back about doing one. +++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++ ____Pascal's Wager (or Pascal's Gambit) is a suggestion posed by the French philosopher, mathematician and physicist Blaise Pascal that, even though the existence of god cannot be determined through reason, a person should wager as though god exists, because living life accordingly has everything to gain, and nothing to lose. Pascal states, however, that some do not have the ability to believe. In this case, he directs them to live as though they had faith, which may lead them to belief. The Wager was set out in note 233 of his Pensées, a posthumously published collection of notes made by Pascal in his last years as he worked on a treatise on Christian apologetics. Historically, Pascal's Wager was groundbreaking as it had charted new territory in probability theory, was one of the first attempts to make use of the concept of infinity, marked the first formal use of decision theory, and anticipated the future philosophies of pragmatism and voluntarism.[1]

You deserve to feel better. You should not feel guilty. Keep us updated on how it goes!

I'm not sure either. the nice guy that started this thread (and offered to put me up at his house so we could see Dr L!) said that she mentioned that there are only 4 doctors in the world she considers qualified to treat pandas. And some of us are interested in who she considers those to be. Don't know why its controvertial. We live near Standford. No body's interested there - they all have their own research projects going on I guess. There is one phychiatrist (who I got from someone on this site - who shared their doctor with me) did help us. Her area of expertise is OCD, she has a practice and is a professor at Standford as well. She's not an expert, but a beleiver, and was at the NIMH meeting. She has about 30 pandas patients. I don't beleive there is a secret society (I hope not!) but I may have started that with a somewhat sarcastic remark, a joke I thought, that was taken too seriously. Sorry if I offended you nevergiveup. Really, I'm not a bully, I'm just trying to find out where to take my son.

The sample size of the original study was small. I don't know if general Cam K II has been tested widely for other studies however, becuase it has been studied for other conditions, so perhaps a norm for the general population has been established.

"Dr. Latimer told me yesterday that there are only four doctors in the world (including herself) she considers qualified to treat PANDAS properly." that is the quote from the original thread. So, it isn't "we on the forum who are narrow minded" its Dr. Latimer? The forum is meant to share information...so we can get help for our kids. If you have some doctors that you know have helped some kids - add their names to the pinned "Drs who have helped" thread. Fisrt you said that she is takling about people we don't know, and now you say that neurologists everywhere are treating it... I just want to know who she considers the 4 are. I know who the forum would (or maybe 5 or 6).. I do agree that someday there will be lots of key researchers and doctors that make their names known (once they "get the green light") The ones that are doing it while facing a stop light are the ones that matter at the moment 9my personal heros), to me, becuase I need help now.

I dunno. google it. might mean that if you do ivig you are at risk for anaphylactic shock. but, I think they have immunoglobulin with out the IgA for those patients. Below is taken from a site talking about it...but they are tlaking about patients with NO or REALLY low IgA. Your child has some, even in the normal range over all. ______________________________________________________________ "Patients with IgA Deficiency are often considered to be at increased risk of anaphylactic reactions when they receive blood products (including IVIG) that contain some IgA. This is thought to be due to IgG (or possibly IgE) anti-IgA antibodies which may be found in some of these people. However, it has been observed that many patients with IgA deficiency do not have adverse reactions to blood products or IVIG. There is no agreement among experts in this field regarding the magnitude of the risk of these types of reactions in IgA deficiency, or the need for caution or measurement of anti-IgA antibodies before administration of blood or IVIG to these individuals.

That was a joke nevergiveup. SC, and lumpus and many other disorders are not pandas...my child doesn't have those diseases. And, just because a doctor treated a patient or two, does not mean that they are expert in diagnosing and treating pandas(cllit whatever you want). I firmly beleive that far more "serious cases" are being sent to psychiatric wards or being put on heavy meds than being treated for infection triggered immune disorder that cause neuor-psychiatric symptoms. Dr Latimer said there are 4...that are experts...that's what we are talking about. There are defiantley more than 4 treating it (heck, I've got a local treating doc that asks ME for information!), we are talking the foremost treating experts - specializing in it. That have seen at least 30 cases. And those that "beleive" in it. Sounds like you don't. You think all pandas cases can be classified as some other disorder? I think it is a diagnosis of exclusion. We ruled everything else out to get to it! So, back to the point. Dr L considers herself a specialist. Who does she consider to be the other 3?

ANOTHER LAUGH - I know of at least one head of immunology (shall remain nameless) that IS practicing in secret because he doesn't want to be known as the "pandas" doctor. Head of immunology at one of the world's leading research centers...but then again, he was just borrowing Dr. K's protocol.

I don't remember. It was one of those ..one thing leads to another searches. I think I may have started just looking at Cunninghams research papers (not pandas specific), and I was looking at heart involvement, because Cam K involved in heart issue they think linked to SC..and there is thing called Lyme Carditis...so..it was involved. At one point Buster made a comment somewhere on other things that raise CamK II ..sorry can't be more specific. It wasn't like I found a list somewhere.

What doctor prescribed?

yes, I would think that cases where all the symptoms disappear, yet the cunningham neuronals remail high would indicate that something closed the BBB. In cunningham's original study, she tested cerebral spinal fluid too...to make sure it was crossing the barrier, not just in the sera.

Are these doctors practicing in secret? I know the doctors I mentioned were at that NIMH meeting. And, the doctors I'm referring to are the ones being asked to participate in writing the white paper and present at the conferences. Most doctors and researchers like to have their name on papers and present at conferences when they invest that much time in becomeing an expert, so I'd think it wold be fairly esy to find them. I can't tell you the number of doctors I've call trying ot FIND a treating doctor in our area. They can't even come up with a name to REFER me to. so, if you are a patient of Dr. L's - PLEASE ask her what doctors she is reffering to. I'd love to have another resource. As far as I have ever seen, she is the only one using PEX, but is she switching more to IVIG in light of what other docs have been finding ? I think we should all come up with a list of question and the next person with an appointment whoudl ask Dr L! (kidding...that would be one long appointment).

Keith and Elizabeth thats exactlyt he sort of info I'm interested in seeing - if your symptoms have gone away with Lyme antibiotics alone, did your cunningham levels go down too? Out of curiousity - did your child react to only strep exposure, or all viruses (pitand?).

yes. agree. I once googled cam K, and there are a number of other conditions that raise your cam K. KAwasaki's disease is one...there are others. I don't know about the anti-neuorals though, and I think that the other diseases present with symptoms other than neuor-psyc, and have other tests that can be run, to diagnose them. But good point.