eljomom

What? IVIG half-life is 3-4 weeks? Why does NIH and Dr. K and Dr. L believe that one should be enough, maybe 2 tops, but not for a while? I thought healing was supposed to be ongoing??

Okay.....I'm at my limit. My "I'm obsessed" post has made me realize that part of my obsession with all this is feeling paralyzed and doing nothing. I have not run dd to all sorts of doctors, because I don't want to freak her out. In addition, our very well respected PANDAS doctor has said that there is no need to test for certain things that are still just not sitting well with me. But what I have realized is that I need to take action, rule some things out some how, so I can stop wondering!!!! The problem is that my husband hears the pandas doc say not to worry about this or that, and then he says "Dr. so-and-so said we didn't need to worry about this-or-that." So here's a list of things I mull over daily, not knowing IF or HOW to test for, but truly wondering what thoughts are about these things. I will start with the ones our pandas doc has said there is no need to test for: 1) YEAST. (pandas doc has said "pandas kids never have issues with yeast...it's weird" and also "that kind of testing is just quackery.") 2) C3D (pandas doc says "what would we do with that information then? nothing." I say, it would tell us the immune system is on overdrive due to a hidden infection.) 3) Co-infections/repeat Lyme. ("Not necessary to test co-infections." and "Lyme was negative because Igenex Western Blot said NEGATIVE" even though numerous bands showed up) 4) ALLERGIES/FOOD SENSITIVITIES ("no, not a player. Allergies are only a blip to the immune system compared to strep.") 5) VIRAL PANEL ("we wouldn't do anything with this information anyways. You don't give antivirals for pandas.") 6) Gut stuff (strep in gut?) Let's say I do want to test for these things.....what are the most reputable tests? 1) I have heard OAT for yeast, or is this just another wishy-washy holistic doctor test? What about blood test for systemic yeast? 3) Lyme---Our pandas doc told us that Brian Fallon (THE big neuropsych. Lyme researcher whom she respects) has switched from IGenex to Stony Brook Labs. Anyone? 4) Allergies/food sensitivities....have heard so many disputing thoughts on these tests. My ped. will run the RAST blood test. What others are recommended? 6) Is this stuff really worth testing ? Gut stuff? I want to know of those who have tested this stuff, has it been helpful? In regards to really helping with pandas treatment? The integrative route? I hear yeast can make tics worse, and can't for the life of me figure out physiologically how this would be possible. We go to ped. tomorrow for follow up culture to see if dd cleared the strep. I wonder what of the above I might convince him to test. After that, not sure who to see. Wonder if there is one-stop shopping with a certain type of doctor? Or worth a phone consult with someone like Scott Smith? Does he test? I don't want to overdo the supplement route. I have seen it all get flushed down the toilet first hand personally. Thanks for input.

katsmom---do you mean IVIG treatments? I have had a nurse friend ask me why they don't do IG injections (not via IVIG)---she used to give them for autoimmune problems long ago.

Wow---this is crazy! I know that each child is a different case, but it makes no sense to me sometimes how these docs are making decisions. We have NO strep history other than a couple weeks ago, and we are on the tonsillectomy route. My husband says "we have to do what the doctors say...rule things out." My gut is that taking tonsils will do NOTHING. I hope for once I'm wrong. I don't see how it's going to help the autoimmune dysfunction.

JJMom---Yes, exactly my questions!

Thanks ladies......I find that even when I am not on the computer, I am still thinking about it. I think it's better when I am taking steps/action to do something. But do you find that you think about it all the time?

My mom and husband are worried about me because they think I am obsessed with all this pandas stuff. Well, I AM!!!! Wondering if anyone else thinks about this from the minute they get up till the minute they go to bed. And every time they see their kid tic, or touch evenly, or even just wondering if every little thing is a tic or compulsion. There are so many rabbit trails to go down with this disease. I have been paralyzed and spinning with which one to take. Lyme? Well, which LLMD? Allergies? Well, allergist? DAN!? Scratch test? RAST test? Integrative docs IgG blood tests? Everything is so controversial, and not without flaw. And the reason I don't just go down every rabbit trail is because the more docs I take my dd to, the more she will think "something's wrong with me." I have managed to always talk to the docs in private about all her issues, without her being there, and then just bring her in for a quick exam. This is with the pediatrician, Dr. L (although because she only sees dd for 2 minutes, I think that's worked against us), second opinion neurologist, infectious disease docs. So at least I can say that while she must know that she has tics, she doesn't think she's "sick" and worry about THAT every time she tics. I may be wrong here doing it that way, but that's kept me from running her all over the place to see numerous docs. I do realize that this has also limited me in getting anywhere with this. OH, Dr. L also said that allergies (I asked specifically) would NOT be a player in pandas. That they truly just cause a little "blip" in the immune response, and would not impact pandas. Also, as far as testing my dh and I for strep carriage, that "it's never the adults...don't bother." So yes, I am OBSESSED with this. Just wondering if I am alone in this....maybe I should check myself into a treatment center. But as a momma bear, I know when I get out, pandas will still be there, affecting my baby. No, she's not non-functional. But she is NOT who she was over a year ago.

It's interesting that Dr. L recommended IVIG/PEX if your child is functioning. She told us it's not off the table, but dd is functioning, and she wants to get tonsils out, etc. before moving on with it if needed. My feeling is that regardless of if a child is "functional" or not, it's the same darn process going on --- autoimmune dysfunction---and the same treatment is needed regardless of functioning. I know there are some lucky people who find remission from abx, but we are NOT in that group. We are chronic. Yet we aren't offered IVIG because dd is functional. At the same time, I'm scared stiff about IVIG....hearing how some have gotten worse on it, because it's a blood product, and because different docs have such different views of it (Dr. K.....one IVIG....Dr. B....repeated IVIG). This makes my confidence level tumble as to which direction to go. Even though we are not being offered IVIG right now, I know we could go to Dr. B or Dr. K and have it handed to us on a platter, so I still wrestle with what to do.....

DD7 was positive for strep last week. No symptoms whatsoever, other than her tics had become NONSTOP (as opposed to all day long) the 10 days leading up to the culture. when this first started, titers were tested after 4 months (took that long to get a doc to believe something like pandas was valid) and were negative, as was a quick strep test. So in the year + that this started, never took her for a culture again. Went on a whim and took her, and bam. Positive. Sister had started a tic and separation anxiety the week before dd7 started worsening of tics. Now she's been on Keflex for a week (dropped the 100 mg zithromax), and she seems to be getting worse. She is still blinking and scrunching nose, maybe a little less frequent, doing the mouth/tongue stretch, the arm stiffen/bend/finger spread, evening up touching, rocking head side to side, but has added smelling EVERYTHING again, and is now jumping a lot. Probably left something out...sigh. Anyhow, I know symptoms can linger for a bit, so wondering if it's normal (well, is anything normal for pandas), for her symptoms to still be elevated after a week of abx? Should I see her coming back to normal baseline of ticcing all day, just not nonstop? So frustrated after yesterdays appt. with Dr. L. Husband sat there....AGAIN....and said that things had "subsided" from last summers really intense onset. Subsided???? He's hardly around her, and pays no attention. I, on the other hand, am with her 24/7 (plus we homeschool) and see it ALL. The tics are not as obvious because they are DIFFERENT from last summer. So Dr. L hears him saying this, and we walk out, again, with orders, again, to see an ENT and get tonsils pulled, when this is our first documented strep. What about the immune component, I ask??? Well, she wants to address any possible underlying triggers. Just had to vent. Feel like dh and I are not playing on the same team.

Wow S&S. I am still one of the "no freakin' way" people....still thinking that if i walk in the door to an LLMD, we're walking out with a LYme diagnosis. I am still not totally sold on "just having positive bands" being a positive lyme test. Were both the labs you tested at giving you a "positive" result on the tests, or were they marked "negative" with some positive bands. I am curious the labs you used, and also the doctor. I may end up eating these words like you are doing, and just am looking for more info. Thanks! I do want to rule out any other infections before trying IVIG, and Lyme is that one that just nags at me.

How do you find out about molds? Sounds way too simple. Do molds cause autoimmune problems?

NMom--please keep us posted on what she says about contact with her between appointments. I get myself in a knot days leading up to our apts with her because I know if something happens between them, I am on my own. When I leave an apt., I always think of one or two things I wished I'd spoken about (even though I go in with a list, sometimes things come up in the appt. that I don't digest until we hit the parking lot!) We LOVE dr. L, but when you are putting all your eggs in one basket with a doctor, and they are your ONLY help, it is super frustrating to not be able to get replies...busy or not. So please let us know if you get the courage to ask her about this situation (not returning calls, etc...).

I know it's Lyme-related. Somehow ended up in my e-mail inbox. Went ahead and read it, and it almost sounds like they are describing pandas!!! My link

tampicc---has the IVIG helped the tics? Was your son chronic??

So topaz....did a pandas doc agree with the TS AND pandas diagnosis? Can it be both??

Thanks Kathy! I am curious about the "specific anti-inflammatory antibiotic and another one that hits everywhere in the body very well." Can you tell me what your son is on? Also, what lab was used to test for Bartonella? Also, how do you know yeast is creeping back up? How does yeast increase tics?

sorry momaine...also wanted to ask if lyme/bart treatment is helping? Absolutely yes! My dd who has lyme/bartonella had the following symptoms in order of severity: OCD, ADD, vocal and motor tics, completely unable to write/read due to ocd so can't track hand writing ability. Classic symptoms. Also urinary frequency (one bed wetting episode when first infected)

momaine- what test was used for bartonella? Absolutely yes! My dd who has lyme/bartonella had the following symptoms in order of severity: OCD, ADD, vocal and motor tics, completely unable to write/read due to ocd so can't track hand writing ability. Classic symptoms. Also urinary frequency (one bed wetting episode when first infected)

I wish I had some advice for you...I struggle to decipher what is "normal" for a child (aren't they all "abnormal" to some degree sometimes?), and what is part of pandas. Some of what you describe could be "normal" for a 10 year old BOY. Or it could not be. I am interested in your diagnosis of TS AND Pandas. Who diagnosed that? I was led to believe that the TS symptoms we are seeing (tics, some ocd, etc...) are from PANDAS. At the same time, they aren't going away, and it's been over a year, so in some sense, it is also TS. Did the antibiotics ever help? Did Dr. B recommend IVIG?

peglem....okay, thanks. So then...we need to get rid of antineuronals. Which are circulating because the immune system thinks the brain is the infection....wouldn't this happen even after the infection is gone?

So Alex---are you treating just due to ASO? or are symptoms chronic as well? As i understand, some school-age kids run around with elevated titers all the time...maybe just from sheer exposure, whilst not actually contracting strep. LLM--thanks again for taking the time to explain. So truly YEAST can cause inflammation??? The kind of inflammation that reaches the brain? Also, just trying to connect the dots....the CamK is what causes the formation of auto-antibodies (antineuronals?) Pyroluria? I was tested for that a few years ago...and was high. Tested 2 of my other kids (they both have mild touching oc-tendencies) and one of them now is ticcing. THey were high. Never tested my pandas/pitand kid. Does pyroluria cause inflammation?

Alex---wow! That is exactly what I was thinking about this morning....the usual. Wake up. Sigh. STart thinking about pandas. Make breakfast. Think about pandas. Or pitand. or pans. or whatever the @#$& it is anymore. But what I was thinking is that I am a scientific person. I need the science behind it. So thank you for putting it in the beautiful nutshell. LLM---I agree...I think I was understanding that Cam K can elevate in response to other infections as well. Meaning antibodies to Lyme, myco p, or who knows what else, elevate Cam K. But then I go back to the same old question.....if it's the immune system that is messed up, and thinks the brain is strep, lyme, myco......well, the brain is not going to go away, so won't that signaling continue. Those rogue antibodies (self-antibodies) are not targeting the brain instead of the strep (or other) antigen. How will they ever stop going strong, other than a lobotomy? Alex, LLM, Buster...or anyone with a scientific mind....can you please go into how the anti-neuronals are involved in this picture? As I understand (from a neurologist we saw for a second opinion), your average Joe walking down the street may have some antineuronal antibodies in his blood at any given time. Even Cunningham's work shows on the graph "normal" people with some antineuronals (or maybe I'm just thinking of her "normal mean" not just being "zero.") Thanks!

Ugh. This scares me. We just decided to follow Dr. L's urging to remove tonsils. She was irritated that they didn't do it 2 years ago when they took her adenoids. Never had diagnosed strep (likely just missed it by not taking her in), until yesterday. And NO strep symptoms....just tics going from normal-all-day to nonstop for 10 days. Finally got first strep test. Who knows how long she'd been carrying it, etc. Now I'm worried it won't help/will make things worse.

dcmom....you know what, that brings me back to the whole "how do antibiotics really help?" question. Autoimmune means antibodies are reacting with the brain. The brain is not going anywhere, so once there is autoimmune going on against the brain, it seems there would be no way to stop it, right? Sigh.

So is that it though? 2 weeks and then no more antibiotics? That's my question. Zithromax has not put dd in remission. Been on it 8 months. So now we actually DO have strep (she was on augmentin for a month per dr. l, then the low dose zith, with no documented strep). So if after 10 days the strep is gone, then what? If symptoms are still there (symptoms of tics, ocd, etc.....not strep....she had no strep symptoms as it was)?