peglem

My younger brother got pneumonia when he was born, before he left the hospital. Schizophrenia struck when he was a young adult.

We saw Dr.L the 1st week of January this year- she had a light pink rash at that time, but I had just sort of noticed it on the plane ride over. I commented to my hub about it and he had noticed it for the last couple of days, but we never really thought anything of it. It has persisted...gets darker on days when she seems the most fatigued... If it is lupus, I guess drug induced is the best kind...but, sure would hate to give up my zithromagic, it really has been the best for her PANDAS. And what if the calm down we've seen is really just lupus fatigue? I hope its just ups and downs of recovery- but that butterfly rash...anyone know anyhting else that can cause that? Well, we'll get it checked out. I'm darned sick of dealing with all this crap!

from here: http://www.uklupus.co.uk/facts.html

I don't think a dx is likely w/o +ANA, though I do not know that much about lupus. I did make an appt w/ her pediatrician for this Tuesday...we'll see what he thinks. I've been ignoring the rash for awhile, hoping it would go away, but, I don't know there just seems to be this kind of "not feeling good" going on as well...nothing too specific, and maybe its just part of her recovery. Always something with this kid!

Thanks for the heads up, but nobody seems to want to dx my kid w/ anything but autism. Wouldn't they need some kind of laboratory indicators for a lupus dx?

Ugh, I was kind of thinking that, but the rheumatologist we saw in November kind of dismissed us and referred us to Latimer in order to wash his hands of us. So, I was hoping, if the treatment is the same, maybe we just let it go... Guess I'll start with her pediatrician...maybe he can order the ANA, and we'll have something to show the rheum, instead of it just being a PITA mom who goes on the internet too much.

My daughter actually hasn't been formally dx'd with PANDAS because basically she's a neurological mess. She is considered to be pretty severely autistic, but that's just another way to say she's a neurological mess. She does have a definite and long history of behavioral exacerbations linked to positive strep tests- but is also considered to be a carrier. CamK2 in the SC range and high anti-D2 antibodies. Good response to steroid burst, and treatment dose of zithro. She's been doing well, comparatively speaking, for about 3 months, following a course of rifampin, then 500mg zith every other day. But, since the beginning of January (a week or so after starting the higher dose of zith) she's had this rash across the bridge of her nose and across her cheek bones (like maxillary sinus area). Through January and february she has seemed to be tired a lot- napping more than usual, and generally less energetic than usual. I thought she was just recovering from the last PANDAS exacerbation (Oct,Nov,Dec). But the only thing I can find @ this rash is Lupus...and I wonder if its something I need to deal with...I mean what would Lupus (major symptoms- lethargy, lack of energy type stuff) mixed with PANDAS (hyper, high anxiety, OCD, Ticcy) look like? I feel almost as though the symptoms of each of these are battling inside her for dominance. Her ANA tested in Nov. was normal- but that was before this rash, and her immune deficiencies do put her at risk for autoimmune disorders. I wonder if there is any doctor who would ever be able to sort this out w/o accusing me of munchausen's.

I get that high CamK2 activity could be caused by many things, but I'm wondering if you find the anti-neuronal antibodies from the Cunningham test significant in any way. My daughter's CamK2 was at 242%- solidly in the SC range. But, it seems to me the fact that she had very high anti-D2 seems more important to me. I mean, you can say that we're not sure why the CamK2 activity is high, but an anti-neuronal antibody just should not be there and whether its still being studied or not....there definitely is a high level of an anti-neuronal antibody. Am I understanding this correctly?

Not an expert, just a very frustrated amature. Wondering if they checked IgA and IgE levels. From what I have been reading (and there is very little info out there that I can find) IgE, IgA deficiencies are correlated to high risk for autoimmune disorders. Also IgG subclasses 2 & 4.

So, Ive been wondering ever since I read a bit on mycoplasma...since mycoplasma is very tiny and goes intracellular, having no cell wall of its own. Is it possible for it to infect other, larger bacteria, like, say strep A? I couldn't find anything on this on pubmed.

I was hoping that somebody who knows more than me would give an answer. But, I think it depends on what is causing the swelling and if keflex is effective against it. Some abx (zith) are known to be anti-inflammatory. I don't know if keflex is or not.

Pennicillan failed to control my daughter's strep- she tested positive after having been on it for several months. Zith did the trick...but she needed full treatment dose, not just prophylaxis. What finally really helped was 10 days of rifampin in addition to treatment dose of augmentin. Then we went back to treatment dose of zith. I'm sending prayers, too!

But wouldn't the prevalence of multiple infectious agents just point to some kind of immune system problem/defect? PANDAS kids' are not fighting off these microbes like the general population, and is either making defective auto-AB, or is not managing to clean up AB that is attacking/reacting w/ self.

Its in the pinned thread at the top of the forum.

Yes, unless you are using S. Boulardii as probiotic. Boulardii is a good yeast, and Nystatin will kill it.

I think that is a possibility- not so much because the immune system is suppressed, but because the way the immune system "learns" is by encountering pathogens and developing ways to defend against it. Antibiotics reduce bacteria- the immune system doesn't need to respond as much.

I'm so frustrated because I'm trying so hard to understand this and still, it doesn't make sense to me. I get that high dose stops production of immune cells (B cells?) in the bone marrow. But I don't understand why, when that production comes back, anything would be different- wouldn't the bone marrow keep producing the same kind of immune cells it did before? And if the donor IgG contains some of the renegade antibodies that are causing the problems, why wouldn't a higher dose contain more? And how would a lower dose make things worse? I've looked for answers on pubmed....I'm not finding them. Also, reading the MS sites, many with that autoimmune disorder are getting monthly high dose ivig. My child does have immune deficiency- not just IgG,(with an IgG4 subclass def. as well) but also IgA and IgE. You know what? There's not much info on that either. Apparently, each of these, all by themselves, puts one at greater risk for autoimmune disorders. Does my daughter only have PANDAS, or are there other autoimmune issues. There is so much unknown. So much guesswork. So much frustration.

What treatment was approved by UHC? And was it approved under a PANDAS dx code or something else?

I think the key is whether he couldn't sit still or wouldn't sit still. The hypers are often a symptom in PANDAS and disciplining that would be like disciplining a sneeze! My daughter has bouts of extreme silliness and wild exuberance (I think its yeasty behavior for her)- I just figure, if she's going to be symptomatic, I'd much rather it be this than the ragies! Besides, her joy is so contagious when she gets like that.

Ick, I can feel that sick heaviness in your chest. The oh-no-not-again worries. Bed wetting is an early sign for my daughter, too. Thanks for the update, and I hope this gets resolved quickly for your family and pixie is back on track!

corticosteroids (prednisone) suppress the immune system. So even if your child is on abx at the time- pathogens (especially virus) will face less opposition while the steroids are in the body. Once the steroids wear off you'll frequently see illness as the immune system begins to fight again.

Wow! You have much to be congratulated for! Its so uplifting to hear all the joy you are feeling!

An exacerbation would be a sudden worsening in intensity and/or frequency of tics and/or OCD behaviors...or any of the other PANDAS symptoms (ie..urinary frequency, separation anxiety, rages, etc.) for a period of time. Has your son had those behaviors/tics steadily for 7 years, w/o any worse/better periods?

I think generally speaking, antifungals/antiyeast products do not affect how well abx works- quite the opposite, it is usually the abx that affects how well the antifungals/anti-yeast works.

Do you have a link to the article or abstract, or summary? Does it say anything about dosage?