norcalmom

Thanks for all the good information. I think we are through the thick of it - with all your help. Yesterday we added Benedryl, every 4/6 hours, and kept the advil going regardless of how he said his head felt. He had an increase in headache last night, but I gave him two advil, and woke him in 5 hours to give another 1 with a benedryl..Also gave him some bentonite clay during the day. Started his Azith back up today. He said his headache was at a .5 on scale of 1-10. ..only when he shakes his head (started head tics day one infusion) they are on the milds side -almost gone today. I'm glad it looks like we made it though without the steroids (or a very small amount during vomiting)...At least is looks like we have, but I'm continuing with the advil/benedryl for another day, and maybe the benedryl for an additional day after that. The vomiting for DS was a one time thing both times - first time started two full days after IVIG...this time late evening of second day IVIG. Our drip was pretty slow...slower than it was with Dr K because DS complained of minor headache half way through day one, so they stopped the drip for a while, and then made it slower. For 37.5ml/day - over 4.5 hours each day...that is drip time only, the flush was another 20 minutes on top of that each day. Tired mom - kids react differently to IVIG - some take several weeks to notice any improvement. I think the one caoom thing that everyone will say is that they get better in waves. You may start to see some changes in a week or two. I started to see some minor stuff I thought might be my wishful thinking with in a few days of the first ivig...but it wasn't until 4 weeks that I knew for sure it was working.

Thanks all- mkur - racing brain is probably steroid side effect...causes irritability, insomnia, and hyperness in most people. Another reason I'm trying to avoid it (but do have the scrip just in case!!).. I'll set the alarm for the advil and benedryl... Thank you!! Peg - I know its soooo weird. Part of me feels that the vomiting at least is something we might want some of - like a fever - you body's way of getting rid of something...of course its also a sign of inter cranial pressure...which we don't want...so hard to tell what is gong on. Last time, he vomited several hours after a steroid does, in absence of a headache. It started 2 days after ivig. This time it was the evening of the second does of ivig...

I stopped the antibiotics...day before ivig I gave him half does of azith, and no rifampin...and nothing past two days of ivig..feel like too much stress on his liver..kinda made my own decision on that one... Can you give activated chracoal during the day? I will call doc H! Thanks! k

I knew it would happen again. Up all night with vomiting. I phoned doctor when his headache seemed not to be reacting to advil, and went out to pick up the scrip for prednisone, and DS fell asleep (he had had two advil, so I was hoping that that was enough...and I wouldn't have to use the pred.)..but woke up with splitting migraine, and vomiting about an hour later...gave the pred...of course he threw it up..called doc again, he said to try one more half dose, since he might have absorbed some in the 10 minutes it was in his stomach... He kept that down for a whole 15 minutes...and I do think it was enough to take the edge off the migraine, but the vomiting continued until about 3:00am (stared at 9:00pm). I had to give him some more advil, and I gave him some this morning as well. I REALLY don't want to use the steroids - I just don't believe they are the right thing to do with pandas kids - we just spent beaucoup energy getting ivig, to bolster his immune system, and now I'm going to supress it with steroids? Not to mention, if he has underlying infections- the ivig antibodies are attacking it - and I don't want to stop that attack. But of course, have to address the migraine. My question is - what have your docs recommended post ivig ? We used 2 pretty high doses of pred. last time from dr K. ..before I knew much about what it did, and that there could be chronic infection in pandas kids at the route of this evil. I think he got a very small does last night amid all the vomiting...and I'm going to try not to use it today (doc gave us 3 days worth). I'm not sure if the vomiting is from the migraine, or the headache vomiting are from "herxing", or just an ivig side effect. There really isn't anyway to know. Vomitting is a much less common side effect from the medication according to my doctor. He also had a similar vomiting two days after switching to Doxycycline..and I'm now thinking that the vomiting for him is a herx reaction. We're pretty sure he has mycoplasma, and that, like lyme, causes herxing when it is killed off. I think I remember an old thread saying they gave benedryl post ivig. Did anyone do this or recommended from doctor? I know DS got a does of benedryl I gave him one this morning with some advil when he woke, trying to get a jump on the pain - figured the benedryl couldn't hurt and might get his to sleep again, since he didn't get much last night. Thank you! ps-yes he's hydrated

Hi Pandas16, How are you? Did you get into see the doctor today? Please let us know how you are doing. Best- Norcall

He also sees patients at the Lucille Packard clinic location in Los Gatos. LPCH is part of Stanford.

So far so good. This is like the Ritz of medical care..a very California version of the Ritz...spent a hour and a half talking to the child services assistant ( on staff psychologist).. I was thinking, just stick him already... But it worked out fine. Probably should have given 2 of the Clonazepam, his blood pressure was pretty high until the IV placement was done . It was a long day yesterday. My only complaint is that doctor orders take so long...since they phone all orders back and forth, even the benedryl and Tylenol. I'm pretty sure insurance covering...the hospital told me they didn't even need protect approval. We have different insurance now, and no longer self employed. Don't know how immunologist wrote it up. The biggest mistake was telling DS he could get a half pipe for the yard for skate boarding ( reward/bribe/mommy guilt reducer)(psychiatrist also suggested a "really big reward to help him get through his anxiety)...I mistakenly thought it would be two quarter pipes put together. The size and the price are exponentially larger! We stayed with gammaguard.. Thought about switching it to Gammunex(sp) but felt like my stress levels were high enough, and didn't want to introduce another thing that was outside the staffs normal routine.

Philly - If it is a link to a you tube address- you can remove/change the you tube name address and it cannot be accessed. On a much better note - I'm wishing you and your son a very good birthday - with all the recent progress you have so much to celebrate! Don't let any thing take away from that!

Thanks all!!! Finally got psychiatrist on the phone yesterday. She rx'd him a very low does of clonazepan, which he can take one or two of. We tried it out on him today after telling him he was going in for ivig (belive me, I thought I giving it to him before telling him - 30 minutes of raging and crying -at one point he went out an was pacing the garage and thought he might pick up a baseball bat and hit one of the cars!) once he calmed down a bit I asked if he wanted to try it. Seemed to work well. It was a .5mg does, and he really only needs it to work for a couple hours...to get him through the car ride and getting the needle in. I'm going to give him the option to take it in the morning (and I'm pretty sure he will want to do it) some of this needle anxiety seems to come from lack of control over his physical condition, and his medical treatment (and for anyone that has any autoimmune issues, it is extremely anxiety producing to have your body turn on you) so when I spoke with pych. she said to try to give him as much control as possible - which arm they stick, choosing some kind of "reward" when its done, what to pack in his bag for the day...what ever we can, and that seems to be helping too. This afternoon he told me he's scared but he's going to be brave...he's also selecting a "reward" for himself he knows he would never have gotten. He know's how to work it. I'm relived already. I was more afraid to tell him we would be doing another, than actually doing one. And sometime the kids get on my computer and I was afraid that he would see an email that mentioned it, or that someone would let something slip (had to tell his baseball coach and a couple of the parents that will be helping with my daughter for next couple days) ..Husband left for Brazil today...great timing huh? I told DS while he was out running, and decided not to have Dad there - since DS and I are closer and I figure we are the ones who are in this together, and DS has harder time opeing up with hubby...well when DH returned and heard the crying coming formt he garage and tried to skink off, I said "I think you might want to consider sitting out there (in garage). I would if my car was new and his baseball bats were on that side of the garage." She did say that the benedryl could also be a little helpful, but in his case, probably wouldn't be enough.

Yes - the new doc at Stanford. Imunologist that worked with Plasmid's son. Sean Mcghee. I can let you know more after the ivig and follow up. We only had one meeting, bloodwork, and a phone call, seems pretty open to pandas. thanks for the advice and reassurance peg and Sarah- they do deal with kids a lot at this place...so they should be capable. He asked if we had a psychiatrist, and I sent Margo an email (allthough we only saw her twice - the origially dx, and one follow up after the antibitotics) she was out today, but did send me an email asking if DS could go to hospital and see some kids getting it done and walk through ti with a doll or something, and she mentioned she was thinking of a couple meds that might be OK too. He can't go to the hospital - He has "little league day" tomorrow - and all day extravaganza of awards and baseball games. It was late when I got her email - but I am hoping she calls me tomorrow and we get him something. So, I have hope anyway. Thanks for all the input and advice!! I am about to go back and read the old thread that you or buster wrote on the ivig at stanford and gammaguard v gammunex (sp) and double check the type of "flush" one uses saline, one sucrose..I think. scheduling the ivig happened too fast to even talk with the doctor about, so I'm pretty sure we will be getting whatever they usually use. But I think Dr B uses the other one. I don't know that it matters. Did anyone ever get instructions to give benedryl or anything else ahead of time? I think Dr K gave DS some the morning he checked in for his first ivig, but don't recall if he told us to do anything before - except hydate, hydrate, hydrate.

First - thank you for all your input on board. You are very important to a lot of people out here. We may not be much, but we are here for you. Is there a friend or family member you can stay with for a few days, until your Drs appointment? Someone to distract you and give you a little love and make sure you know this is all the PANDAS - it is not you. It is temporary. It will pass...stay strong. But don't hesitate to get into a hospital if you need to. Everyone needs help sometimes...even people without pandas...don't despair. There is help out there. You are not alone. Sending you good thoughts-

yes - he has developed this fear of needles - he never really like them to begin with (he gets lydocaine, a special lunch of his choice and usually some other "reward" almost every blood draw - he should love them! Its jsut gotten worse and worse. Its an irrational pandas thing for sure - he's numb from the lydocaine, and he will say he knows it doesn't hurt, its anxiety over the needle. The first ivig was anxiety producing for other reasons. Once we got there and met Dr K - and the nurses at the center - AMAZING - it was actually relaxing. Someone else was making the medical decisions for a change (and a real doctor! not me !) These nurses work with kids, but not pandas kids. Big difference! And with all of Dr K's shennanigans, hard for Austin to even notice there were needles in the room. The guy is so suited for what he does. I like his new immunologist, esspecially that he is local, but he is dry and my son dislikes him. ..because he is "boring". And he is the one that made Austin get the most recent blood draw. I'm not even sure he will be there at the center during it. Hope the nurses are good. No word back from the psychiatrist that we saw once and got original dx from...was hopeing she might come through with some valium or something...(I could use it!!!)

hello all - DS has ivig on Monday. He has new (ish) extreme fear of needles and jsut mentioning ivig (he does not know he's going yet) made him go beserk. My husband will be out of the country next week, and unfortunatly won't be able to help me get him int he car and to the infusion center - close by, but inside a hospital, which may also freak him out) Has anyone used any sedative prior to ivig to take the edge off enought to get the kid there? He's never taken anything bur benedryl..and I dont think that will cut it.

Philly - what antibiotics has your son been on since you found the mycoplasma? (I think you told me, but I forgot). I'm wondering, with kids that get mycoP repeatedly, if on going low does ivig might be helpful once they stabilize (since, the antibiotics don's seem to act prophylactically?). Please let me know if your doc has discussed with you.

I am soooooooooooo happy for you!!!!!!!!! I think I cried when I saw the video of him, and I'm crying again now. For you both, and the rest of us!!! Thank you for sharing your progress. TOTALLY made my day, and my resolve to schedule ivig #2 today.

There are also different strains of mycoplasma, and I think different antibiotics work better for certain ones. I'm not sure how important that is, because i think they are all treated similarly, but if might be if you have one that is not as common in the US. Dr Garth Nicholson has a list (maybe it was in a presentation posted?) but there is a list of the different strains. Most common in the US I beleive is Homnis (sp?) and ususally treated with azith(this according to my llmd) but the gulf war soldiers that had it had fermentans (sp?) (more common in Europe I think) and they used Doxy. (at least to start off, and then they rotate)

google perianl strep, and click on images button above the google logo. But don't rely on that - get into the pediatrican and get it swabbed - just like you would if she had a swore throat. I believe they prescribe topical antibiotics for it, perhaps in conjunction with oral. Please post back - I'd be interested in knowing. I am fairly sure that a weird rash my DS had was perianal strep that started this whole thing two years ago. At the time I lived in blissful ignorance and threw some over the counter ointment on it that we happen to have int he drawer (antibiotic ointment) and it went away. But, I didn't check it every day, and DS, being a 10 year old boy wasn't too keen on me checking it out. We never went to the doctor for it. Big mistake.

yes...that article is an interesting way to look at EAMom..it says essentially the same thing I am, only they take it step further and use the general population taking the test and then the numbers are really surprising!! I don't want to mislead anyone, I do think we have some kind of issues probably related to lyme, and just because the tests stink doesn't mean you shouldn't take them and see if you can find some hints in there somewhere. They are better than nothing. I guess this is the "science" part of medicine fails us, and we have to rely on the "art".

ooops...I thought I posted this to the lyme board. oh well. Fixit - yes - I saw your post. We are in the same crappy boat!(similar stuff too - ds has myco P - thru the roof). Ivig did work for him however, we did it when he was not exacerbating, and now we have decided to do another (sliding backward again - but not back to where he was pre-ivig). What I mean by 7% false positive comment is - if you take 10 tests, and your chances of a false positive on any one is is 7%, then you are very, very likely to have one of those ten tests be a false positive. (one in every 14 tests will be a false positive in a person that is truly negative). I also think there are alot of people that had lyme, and their immune system did its job and they don't suffer from it (have it any more). No one ever talks about that. I don't know how much that effects the testing - I do know that I've read the the vaccine and people that were treated and recovered, will be more likely to test positive. Basically decided we need to treat the pandas part of what is going on, as well as any chronic infection (lyme, myco P ). We are doing a combo of antibitoics now, and he will get another ivig.

Hello all - why does the lyme testing have to be so crappy? I am going above and beyond to see if DS actually has lyme...and even had myself tested (no symptoms in me, but I grew about 30 miles from Lyme and have pulled many ticks from my body). And the results of the tests? Well, DS is negative western blot - both igenex and CDC, and the full co-infection panel. His IgM was close (one band positive and one band IND) but both were the lyme specific bands, so we did the provocation testing, and DS was positive for one of the two pcr tests (plasmid) and the Dot blot negative for all 3 days. And my tests - I'm negative CDC and positive Igenex - but here's the thing, I'm only positive for IgG, which to me, since I have no symptoms, means my immune system has done its job and produces the correct antibodies. Since I am the type to go above and beyond (as all us pandas parents are!) I also did a provocation test on myself . The LLMD said that usually, they wouldn't do this, and that IF I had lyme in a cystic dormant stage, that my body has figured out basically how to keep in check, it could "wake it up" and move it around to someplace that may give me an issue (Gulp!) My test results were negative for PCR, positive dot blot assay (all 3 days) . The tests, are almost worthless IMO. I know there are those of you out there - going - positive, positive, BUT - with a false positive rate of about 7% on many of these tests...if you take as many tests as we did, isn't the chance of getting a false positive on one about....95%!!!! (this is an exaggerations - I didn't actually run the statistics, but I'm sure its up there. Anyway, sorry to bore you all with that. I'm still going to treat DS for lyme, but without good tests and clear symptomology, I feel like this is an act of faith. For me, I think he could have some chronic infection (lyme or other...not convinced which) but the fact that the LLMDs are best at treating this, and know their antibiotics far better than any other doctors. Jury's out on weather I will treat myself. I have a couple of very minor, very common conditions, that could be related to lyme but most likely not. (nothing set off alarm bells with my LLMD). And most likely, that I would have been bitten 30 years ago. So in my case the risks are higher than the rewards - since I don't plan on having more kids. Here's the article I found - pretty interesting, although older -(1995). There are other things that will cause positive results on these tests. Many are noted in footnotes (and those with those conditions were removed from the study - but - I don't know that DS or myself doesn't have one of those. One of them is "certain autoimmune conditions". In cases like mine where Dot blot positive and PCR negative, this study says you should run another reverse blot to confirm, but that its expensive (at least in 1995) I'm not going to do that - I'm soooo sick of tests...that don't really tell me much. http://www.igenex.com/luatart.htm

I dont't want to mislead anyone - much of this is my opinion and reading between some of line of what is the "published recommendations" and what I think the researchers believe, but cannot come out and say or prove yet. Here is a link to that lyme study she did. I just came across it. It is NOT studying pandas (or neuronal antibodies - but other antibodies) - but its interesting that she is using and comparing strep and lyme. I should really read it a few more times - I don't understand it very well, just that these two antigens (strep and lyme) produce auto-antibodies that result in carditis and arthritis. http://jcm.asm.org/cgi/content/short/43/2/850 Here is the intorduction- "We investigated the possibility that manifestations of Lyme disease in certain hosts, such as arthritis and carditis, may be autoimmunity mediated due to molecular mimicry between the bacterium Borrelia burgdorferi and self-components. We first compared amino acid sequences of Streptococcus pyogenes M protein, a known inducer of antibodies that are cross-reactive with myosin, and B. burgdorferi and found significant homologies with OspA protein. We found that S. pyogenes M5-specific antibodies and sera from B. burgdorferi-infected mice reacted with both myosin and B. burgdorferi proteins by Western blots and enzyme-linked immunosorbent assay. To investigate the relationship between self-reactivity and the response to B. burgdorferi, NZB mice, models of autoimmunity, were infected. NZB mice infected with B. burgdorferi developed higher degrees of joint swelling and higher anti-B. burgdorferi immunoglobulin M cross-reactive responses than other strains with identical major histocompatibility complex (DBA/2 and BALB/c). These studies reveal immunological cross-reactivity and suggest that B. burgdorferi may share common epitopes which mimic self-proteins. These implications could be important for certain autoimmunity-susceptible individuals or animals who become infected with B. burgdorferi." If you read the whole thing - you see that they inject some of the mice with both. (from what I recall...it was a few weeks I ago that I read it)

No smarty - not far off - right on !! IMO And I love hoe you said the diagnosis wasn't wrong - it was incomplete. The hypothesis is that a susceptible individual will have the immune reaction when exposed to strep. We do a lot of digging trying to prove they had (or have) strep - but not much in the way in investigating what makes them susceptible. It isn't just genetics that can cause this. Chronic infections and immune dysfunction can too. In Cunningham's recent presentation at UT grand rounds (the one taken down) she had a slide on what makes a person susceptible...it had FOUR inputs. What is in ( is my interpretation) 1) Genetic (you have family members with RF) 2 )Immunologic (you have immune dysfuntion) 3) Neurologic (you have family members with tics/ocd) 4) TYPES of EXPOSURES. (I'm assuming this means Lyme and other antigens) Granted there is no audio with that slide. Its a GIVEN that they had strep exposure. Yes, they will react to strep...but it doesn't mean that they don't have some underlying condition that needs to be treated for them to get better. Yes, I agree the lyme thing is overwhelming. But at the same time, I think there is no coincidence that lyme is already documented to effect the immune system, and to cause ongoing imflamatory reaction. So having lyme and being exposed to strep is like this perfect storm. AND BTW, cunninghams been investigating lyme for a long time. Its antoher thing that causes carditis (and somehow connected to CamK II) - just like strep - which is how she got involved with pandas. She even did a study on antibodies where she injected mice with both lyme and strep. Apparently, they have similar surface proteins - that cause the molecular mimicry phenomenon hypothesized. I recently started a post trying to figure out if there were any commonalities that might distinguish a lyme pandas kid from a mycoP pandas kid from a plain (genetic) pandas kid. The only thing that stood out was the fact that almost ALL of the lyme people that replied had CHRONIC strep (it was either 5/5 or 5/6 of the lyme respondents listed chronic strep). So having clear strep association, that is chronic (can't shake it) looks like it makes it more likely that you also have lyme, not less likely. It would be nice if there was a test to see if it is a genetic problem, but apparently there isn't (the cell line used to test for the DA17 marker has died off) . The only hint that you might belong in that group would be RF in the family.

what state are you in? there is a list of helpful doctors that is pinned at the top of the pandas board, but some are more helpful than others. If you share where you are, I'm sure some local pandas parents can direct you to the best in your area. At the very least - get a VERY thorough examination for Strep- blood work for strep titers (ASO and Anti-Dnase). Consider other types of strep beyond strep throat - impetigo, peri-anal strep (doctors often forget to ask you if your child had a weird rash on his/her rectum...that you may have attributed to not wipping well, and treated yourself with some ointment). Or ANY other odd rash. The strep can be several weeks prior to the onset of symptoms if this is your first or second episode of pandas. And just to complicate things more, people are finding that other infections can set off this reaction as well. Lyme disease and mycoplasma pneumonia (walking pneumonia) are two examples. (and if your doctor will - get IgM and IgG mycoplasma pneumonia titers tested when you do the blood test for the strep). These titers all test if you HAD strep. They are not that accurate - a negative cannot rule out that you hay have had it - but a positive, is definately positive. AND they go down over time - so get in there as soon as possible. Other pandas symtoms commonly include one or more of the following- bedwetting. insomnia, nightmares, frequent daytime urination, OCD (basically ANY odd behavior, or thoughts) intrusive thoughts, extreme irritability, decline in handwriting math skills or ability to copy things, separation anxiety, body dysmorphism, anorexia or food related issues. (there are more) Has there been a rise in any of these things that coincides (or precedes by up to a few weeks) the tics? Pandas can also be just tics - but more commonly has other things associated. So, I'd suggest talking with a specialist.

I personally think there are several things that can cause pandas(PANS). Genetics, Exposures (lyme, vaccines, chronic infections), Immune Defieciencies. Any of one of those things + strep = possible pandas. Any of those 2 + strep = higher probability of pandas... 3 - you get the picture. I think this is what Cunningham believes as well. In the preso that was taken down - she had a slide on what make a person suceptible. Basically says the same as above only she also has neurologic (family members with tics) as a risk factor. Its obviously all hypothesis. But, not everyone is fitting the original cookie cutter. I wish cunningham would publish some data on her lyme numbers. It would be interesting to see if people with lyme, without the neurologic-psych (pandas) symptoms have hi cam K and anti-neruonals, or if it just those with the symptoms. ..as well as those with lyme and known step exposure, or those that only have lyme exposure and no known strep. Also some of these (and other factors) could effect BBB - that is another contributing factor. We haven't made any gains in our antibiotic swich (at least visible) yet. (its been about 6 weeks, 4 weeks Doryx, and a week or so zith/rifampin, and a week of very hi dose provocation that kicked everything off). I think I've seen a little herxing - but - its very difficult to tell - could be side effects, or just the fact that perhaps it doesn't work as well as the other drug. Perhaps we are making headway way with lyme, but the post strep autoimmune sequalae symptoms are too prominent to see any. Hes been pretty much the same pandas-wise. Mood stinks - could be rifampin herx, but I see no resolution of other pandas stuff...he's flat line to slight decline since last virus.

It looks like he passes most of them. Generally I think they like to see about 75% passing.