eljomom

All 4 of my kids are very, very prone to croup---I have always been told it is VIRAL!!! Same exact symptoms...can't breath...cold helps, sometimes steam. Antibiotics will not help, it is viral. One time, my dd was having such a hard time breathing they did a steroid treatment via nebulizer.

Lyme mom---I appreaciate your explanation too, and I sort of go back and forth on this. But with all due respect, and I ONLY ask because I am trying to understand it all.... IF pandas/pitand is and AUTOIMMUNE disorder, then why would antibiotics be the answer??? If it's gone "autoimmune" from what I understand, there doesn't even need to be a current infection?? Isn't it the inflammation from the autoimmune disorder causing the issues?? Unless the abx are just an anti-inflammatory, still not getting it... We tried a number of doctors, but the local ones were not at all helpful. We've successfully worked with two Pandas specialists and each has contributed to our knowledge and helped bring our son one step closer to health. But eventually, my son looked "treatment resistant" - something was still keeping him sick despite aggressive treatments - and we then discovered lyme and co-infections. So now we primarily work with an LLMD but I still consider the Pandas doctors as part of our team (we just don't need them for current treatment). I couldn't find much online either. So what I'm about to explain may be completely incorrect but it helps me get my brain around it...When there's an antigen (an infectious agent) in the body, and the body isn't doing a good job of killing that antigen, one defense mechanism of the immune system is to produce immune complexes. These complexes are like sticky blobs that can bind to the antigen and immobilize it. (If you ever saw the movie The Incredibles, think of when Mr Incredible gets caught in Syndrome's secret office and gets bombarded with sticky tar balls until he can't move). The complexes don't kill the antigen - they just immobilize it. If you have high C3D complexes, it's a sign that you have some sort of chronic infection that isn't being killed. If you start treatment with the right antibiotics (and this is only my understanding - I could be way wrong) then eventually the antigens that are bound up in sticky complexes get released and killed and the C3D levels go down. Someone please correct me if I've gotten it wrong. M.PNEUMONIAE AB - this stands for Mycoplasma Pneumoniae antibodies (a measurement of whether the body was exposed to this antigen and produced antibodies to try to kill it) IGG - this is one of 5 types of immunoglobulin protiens (IgG, IgM, IgE, IgA and IgD) IgM is generally a sign of current or recent infection. IgG is a measurement of some previous exposure but not necessarily current infection. (again, I'm no expert on this) don't know what EIA means 3.09 (H) means the measurement of this antibody was 3.09 and is considered a high/above normal result for this lab. I'm not familiar with a western blot for M. Pneumonia. Are you confusing this with lyme/Igenex? Mycoplasma is a different infection. It can sometimes be carried by ticks, but it can also be spread in other ways. But this lab result doesn't have anything to do with a lyme test. None of us here will know your daughter's full medical story and none of us are doctors. So take this as my opinion only. I can't know if IVIG would benefit your daughter. But my personal experience is contrary to this. Just because a child doesn't respond/get to 100% on one anitbiotic does not mean IVIG has to be the next step. I think you need to be sure of what is keeping your daughter sick. If it's a Pandas reaction to strep and there's no strep left, then maybe IVIG makes sense as the next step. But if the trigger is Mycoplasma or different infection, and the source of the infection hasn't been eradicated, then my impression is that IVIG may help but won't be the entire answer. If it were me, I'd probably keep looking for additional tests or different types of antibiotics before IVIG. But again, I don't know the full medical story and am certainly no doctor. Best of luck in your struggles. I know all you want is to help your daughter. I hope others can chime in with more info for you. I agree with this. I would exhaust all other options first and go see a lyme literate medical doctor (from ilads list) to see if they can recommend the right combo of antibiotics that will get your child well first.LLMDs are experts at treating the multiply infected patient, not just lyme patients. Giving your child an infusion of a pooled blood product is not something I would undertake unless it is the very last option. I have a lot of concern about the safety of IVIG (just as I would any kind of infusion of a blood product) b/c I don't think you can be sure that your child won't get an infection from the IVIG. It is a pooled blood product and there is no way to test for all these possible bugs (lyme, babesia, etc. b/c testing is not completely reliable) but pooling blood from so many people must certainly increase the odds that you will get some blood that has issues. I am sure that some will vehemently disagree with this but I would not risk it unless you have exhausted all other options outside of the traditional pandas treatment. I know someone who called the manufacturer of one of the ivig products b/c her child was about to get an ivig and was told that they do not test it for lyme. She was told that a lot of doctors do not even believe lyme exists. That is not reassuring. I have not investigated it myself but I certainly would do so if I thought this was going to be the only thing that would help my child. I think so many of these kids just need the right combo of antibiotics to get well and you have to go outside of the PANDAS doctors to get fully checked out. Most PANDAS doctors are not trained in the diagnosis and treatment of tick borne diseases so you can't rely on them to rule these things out. There are many stories from "PANDAS" parents on the lyme board indicating that they saw true healing with the right lyme/strep treatment, not with the ivig.I know it is a difficult decision and good luck with it.

LLM--great replies! I agree about trying to dig deeper, and that is where I am getting stuck---trying to figure out who to see to have more tests done to dig deeper. Did either of your pandas docs do that? I'm afraid to go to local I.D. doc, or local immunologist, although it would be helpful to not have to travel. I don't know if they would do the tests I want, etc....do any of the pandas docs test for underlying infections? OUrs does not. You can PM me if you want... We tried a number of doctors, but the local ones were not at all helpful. We've successfully worked with two Pandas specialists and each has contributed to our knowledge and helped bring our son one step closer to health. But eventually, my son looked "treatment resistant" - something was still keeping him sick despite aggressive treatments - and we then discovered lyme and co-infections. So now we primarily work with an LLMD but I still consider the Pandas doctors as part of our team (we just don't need them for current treatment). I couldn't find much online either. So what I'm about to explain may be completely incorrect but it helps me get my brain around it...When there's an antigen (an infectious agent) in the body, and the body isn't doing a good job of killing that antigen, one defense mechanism of the immune system is to produce immune complexes. These complexes are like sticky blobs that can bind to the antigen and immobilize it. (If you ever saw the movie The Incredibles, think of when Mr Incredible gets caught in Syndrome's secret office and gets bombarded with sticky tar balls until he can't move). The complexes don't kill the antigen - they just immobilize it. If you have high C3D complexes, it's a sign that you have some sort of chronic infection that isn't being killed. If you start treatment with the right antibiotics (and this is only my understanding - I could be way wrong) then eventually the antigens that are bound up in sticky complexes get released and killed and the C3D levels go down. Someone please correct me if I've gotten it wrong. M.PNEUMONIAE AB - this stands for Mycoplasma Pneumoniae antibodies (a measurement of whether the body was exposed to this antigen and produced antibodies to try to kill it) IGG - this is one of 5 types of immunoglobulin protiens (IgG, IgM, IgE, IgA and IgD) IgM is generally a sign of current or recent infection. IgG is a measurement of some previous exposure but not necessarily current infection. (again, I'm no expert on this) don't know what EIA means 3.09 (H) means the measurement of this antibody was 3.09 and is considered a high/above normal result for this lab. I'm not familiar with a western blot for M. Pneumonia. Are you confusing this with lyme/Igenex? Mycoplasma is a different infection. It can sometimes be carried by ticks, but it can also be spread in other ways. But this lab result doesn't have anything to do with a lyme test. None of us here will know your daughter's full medical story and none of us are doctors. So take this as my opinion only. I can't know if IVIG would benefit your daughter. But my personal experience is contrary to this. Just because a child doesn't respond/get to 100% on one anitbiotic does not mean IVIG has to be the next step. I think you need to be sure of what is keeping your daughter sick. If it's a Pandas reaction to strep and there's no strep left, then maybe IVIG makes sense as the next step. But if the trigger is Mycoplasma or different infection, and the source of the infection hasn't been eradicated, then my impression is that IVIG may help but won't be the entire answer. If it were me, I'd probably keep looking for additional tests or different types of antibiotics before IVIG. But again, I don't know the full medical story and am certainly no doctor. Best of luck in your struggles. I know all you want is to help your daughter. I hope others can chime in with more info for you.

I have read that steroids increase dopamine, and dopamine increases tics.......that's what scares me.. And making things worse. I also have read that a full viral panel should be done first....ugh...

kcdc3--how long had dd had the tics? can you pm me who your doctor is who did a 2 week taper?

Hello, I usually post on the Pandas/Pitand forum. We see a pandas specialist, but would like to get more comprehensive testing done and care, and it was suggested that I try to find a DAN doctor. Does anyone know of any docs in the Northern Virginia, DC, MD area? We are about 40 miles west of DC. Also, has anyone heard of DR. Richard Layton? Or Debbie McCabe or Dr. Beals? Thanks.

When you say he knows infections better than most....does that mean "lyme"?? I'm afraid of having her pidgeon-holed for Lyme...do they know all other infections too?

I posted a few days ago about specific docs in Northern VA, MD, DC area. didn't get a response, so i thought i would broaden my question a bit. We want to get a comprehensive workup on dd7---full immune panel, viral panel, other bacterias, yeast, food sensitivities, thyroid, C3D...... what kind of doc would be able to cover most of that? Infec. disease? Immunologist? Rheumatologist?? Thanks!

Yes, I am without kids for a bit, so I am posting all the stuff that has been keeping me awake at night. Our pandas doc's next plan for dd is to try a 30 day steroid taper. She has been on abx for almost 3 months, and not much help. I believe either there is no infection left, or it was viral, or still underlying and we're just not getting it. In any case, I am very, very afraid of steroids. I am afraid of making things worse. Psychosis, rages, tics, etc...... I am not comfortable starting them without a more complete workup (that will be another post ) but wanted to see if anyone with a child with many tics had tried steroids successfully? WE have the ocd too, and if it were only ocd, I would probably be more inclined to try. Also, why do them, if they are not a permanent fix....just a temporary? What's better, 5 day burst or 30 day taper? I've heard steroids longer than 2 weeks can cause permanent bipolar disorder! Can they help if you are not trying them right away? The major tics started 7 months ago, but the ocd, etc...has been longer. Thanks for any input....and for putting up with my rambling...

I would really, really like to understand the "chicken or the egg" scenario I am getting out of the paragraph on the right side column on page 323 of the newest Leckman, Murphy and Kurlan paper....starts back with "A new model of Pandas pathogenesis"---but mainly the paragraph starting with "There is now evidence that dopamine can directly influence key immunological mechanisms....." I thought the immune. mechanisms influenced dopamine, thus the symptoms. which came first....?

Does anyone really become "cured" with pitand/pandas? Or are the kids really just in remission? Still not totally certain about how autoimmune diseases work, but thought once they started, they never really go away. I have also read that there does not need to be an infection to have an autoimmune response----can autoimmune cells just keep circulating after illness is gone? Longer than just the half-life...simply because there is an autoimmune process going on? Can kids just harbor antibodies to the basal gangia? When is it too late for "full recovery?" I remember reading something by Swedo saying that IVIG/PEX generally only effective treatement option with initial onset episode..... Are repeated illnesses without treatment more likely to cause kids do develop a "new baseline"? If the same process is going on regardless of the severity, why not treat sooner (if abx not working) rather than wait for it to get worse? Do we need to address the autoimmune, the inflammation, or the infection? In some cases, where antibiotics work, then it is addressing the infection, and the antibodies die out, and kid gets better. But in other cases, abx aren't working, so then what? We are left with no infection, but an autoimmune process? How can you increase the function of Treg cells? How can you decrease infllam. cytokines? How do you get rid of autoantibodies? Close BBB? I still believe this statement I thought of: I really believe there are 2 types of pitand/panda kids. #1 responds to antibiotics (maybe caught early) because antibiotics shut down the bacteria, and the antibodies eventually die out, and the exacerbation resides. #2 continues to have symptoms (even after virus/bacteria) is gone because it has gone on so long with repeated infections and no treatment, so the antibodies continue to go after self-tissue in the basal ganglia, and at this point the antibiotics are not going to be much help (other than maybe some anti-inflam. or immun-modulating). With the Cam K now being found to be high in "normal" kids with active strep, I would think Cam K would be better at identifying and treating kid #1, above, and the anti-neuronal antibodies might then be a better tool for kid #2, who continues to have symptoms beyond the normal "abx clears illness....antibodies die off", because these anti-neuronal antibodies indicate that there is truly auto-immune problem going on. That may all be totally wrong, but am curious. And even if it is true, THEN WHAT? I am sad. The one gift my dd was given has been taken away....her ability to draw. She told me the other day that she "can't draw good anymore" and asked if she is "still an artist."

I think ANA's by cunningham are "anti-neuronal antibodies" and not antinuclear antibodies (ANA on Labcorp). I don't know what ANA's on Labcorp indicate...

Did they run the 30-31 epitope confirmation test? Your 30 and/or 31 may not really be + for Lyme....I don't really get it, but when I talked to Dr. Harris at Igenex, he suggested it, and we ended up negative. Weird, I know....

Wow -- that is great! Have you posted your tracking sheet? Or would you mind? Need something simple....

I know I have posted before about LLMD's, but rather than go that route, I am wondering if there is anyone who can recommend a practitioner (M.D.) who can do a complete workup (immune, gut, food sensitivity, etc....) on dd7 before we press on with steroids or even IVIG? I feel like our pandas specialist has a role here, but that we need to address some other things that might be playing a part in all of this first. Rather than go to an I.D. doc, an immunologist, lyme doc, etc....maybe there's one who could cover most of this. I was recommended to try Integrative by another wonderful mom from the forum. I don't want someone that is over the top with ONLY holistic stuff, but someone who sees the use of traditional medicine as well as other stuff. I do wonder if food sensitivities and yeast are tipping the pot, so to speak. Also wonder about the immune side, with dd being sick so frequently when she was younger. We live in Warrenton, VA---about 40 miles west of DC. So Northern VA area, DC, MD. Thanks!

"Her pandas test was normal....her titers are not elevated, so she doesn't have pandas....it's likely just a tic disorder..." Well-meaning pediatrician (well, at least I got this one to even draw titers...other one wouldn't).... In fact, that leads me to this quote from ped. #1: "I'm not going to draw blood and run a test for something I don't even understand." Well, at least he was honest. God bless my husband, but last night, while I was floundering again...as dd is not improving on almost 3 months of abx: "WEll, we've tried everything." puke.

pandas16---how long were you having symptoms prior to steroids? also, did you have any tics? I had 30mg/kg in 1988- I stayed well for 12 years no further flare ups. I just recently had a flare up due to mycoplasma and plan on getting them again. I had a very severe case in 98- I was 100% within a month.

Hindsight: symptoms started age 3 or 4?? Diagnosed age 7 Just beginning treatment (3 months into abx)--no help. Likely PITAND. Can we also add on here what treatments "worked" if you are in remission? Thanks

EAMom---Azith---100 mg/day. When we first filled it almost 2 months ago, my "gut" told me it was a very low dose. But since we are seeing a "pandas specialist" I swallowed that concern (well, choked it down). How long did your dd take the 250 mg?? WE don't have confirmed recent strep at all.......maybe started w/it years ago, but biggest hit was viral, then staph impetigo over summer. Are you talking about Azith (or advil)? My dd took 250mg/day Azith. when she was 45 pounds.

S&S---we are on 100 mg/day for 45 pound dd7---no help. Now I'm thinking dose is toooo low!

Yes--that is the source--I got the link from a post here about some other "treatment" for pandas... My fear is that we did NOT treat quickly---this likely has been going on for YEARS!!!! DD7 was chronically ill (still don't know why IgG is normal)---repeated URI's, pneumonia, etc....and finally just stopped treating them for past few years --- fear of too much abx!! She's been quirky and sensory issues with clothing since a little one, and the germ ocd has been at least a couple years or more. Then added a couple tics/compulsions?? Then the explosion---so I can't even call it an "exacerbation" can I? As once the sudden 2-week onset of head to toe tics started, it has not stopped. So I do wonder---if it gets harder to treat the longer it goes on, it must be for a reason. I am really, really in a knot. I watch her tic, and have a couple days here and there where I think "maybe it's getting better"--meaning she will not do the shoulder shrug---arm bend---arm straighten--nose wrinkle--mouth stretch--tongue curl--eye blink--eye roll all in order. Then within a few days, it's all back and something else is added---now the deep exhale and a repeated smile to the whole "routine." Then I think "am i NOT doing anything because she's mostly functioning and she doesn't complain about the tics?" IS that a reason to NOT do something else? Like steroids, ivig, pex?

Yes, that does make sense--thanks! I do wonder about the pathways causing tics though--this is what really worries me. Also, maybe there isn't "brain damage" per se, but neuro-processing damage??

I was reading a link on carcinocin from another thread in this forum and saw this: "Typically, a child with undiagnosed PANDAS may be taken to the Psychologist and/or Paediatrician for treatment of an onset or exacerbation of ADHD symptoms, oppositional behaviours or OCD. Stimulant or anti-depressant medication may be prescribed and/or a behavioural intervention or counselling initiated. As the infection passes and the strep antibodies reduce, the symptoms gradually subside and parents and clinicians believe that the intervention was successful. However, when there is another strep infection, the symptoms return and the process is repeated. It is theorized that the brain is being continuously damaged by the repeated attacks by streptococcus antibodies, and after each attack the recovery of damaged brain tissues may not be complete. Eventually the child may develop a chronic psychiatric disorder." This actually scares me so much, as this seems to be a pretty good description of my child---her symptoms sort of just started a couple years ago, and by June, after the high fever, have not stopped (ie., cumulative, permanent). Even though I believe hers "may" have started with strep, I think this could apply to other things too---viruses, other bacteria,etc...

Wow---so is Scott Smith a pandas expert? Does he deal with pitand? IVig, etc.?? Didn't know he did phone consults...keep me posted!

S&S--Just curious who you are doing the 1 hour phone consult with?