Posts posted by SarahJane
At some point, every PANDAS parent gets that "conspiracy" paranoia Sequin. Or maybe we are just "curious" by nature. And if everybody paid as much attention to the PANDAS news as we do, there would be a run on the dr's offices. Sadly, it doesn't make it thru the filter of most because something "rare" like PANDAS would never happen to them.
Norcalmom...I have not been testing myco p levels. I do plan to request that lab from the ped. (I'm going to get strep titers too even tho' ds's don't rise.) I used Biaxin to treat myco p last spring (with labs/high IgG) and again in the summer (no labs...assumption). Otherwise we use daily zith. It's hard for me to know right now if it's an exposure, illness, or that frickin' loose tooth. I started the Biaxin on Wed, and Thurs seemed better. Our appt with the ped is today. I should do a Lyme test prior to another IVIg since I know myco p is/has been there & there's such a high rate of co-infection. Need to do the Lyme & myco p tests for myself too. Sigh.
Norcalmom...who is handling the meds for the myco p? Your ped or are your seeing an LLMD or another specialist? I'm hopeful you found the right abx too!
Thank you very much for your help/support.
Thank you for the article Mayzoo!
I almost made it to 10am today without my blood boiling. So sorry. This is ridiculous.
That's what I was thinking Vickie. I must've imagined it, but I thought there was at least one article that mentioned that protocol for PANDAS. I am not sure that I will need that much back up (and I still have about 2 months of zith anyway ). Of course now that we're looking at the possibility of another IVIg, we're seeing other symptoms (including trichotillomania and big irrational anger thing tonight). Ugh. On the other hand, if we do the IVIg, we'll get the abx with it. ::sigh:: I sure wish there was an easy protocol to follow. That which does not kill us (or drive us insane) makes us stronger, right?
I wish the forum had a "Like" button. That just shows my Facebook addiction is strong. Thanks for this info! VERY interesting!
We have been switching to Biaxin when we've seen increased symptoms. We did that twice last year. Tested one time and had high myco p IgG & used the Biaxin rx'd by K to kick it. 2nd time I didn't bother testing and our local ped gave me the Biaxin.
Interesting that a booster is another full 2-day dose. And disheartening that we could see a resurrection of old symptoms. Overall, we are still in a good place, but things are creeping back but aren't constant. Very likely it's that frickin' loose tooth doing a lot of it. I gotta get that thing outta there. I'm going to do at least 2 weeks of Biaxin for now...maybe longer. Run some labs (strep titers, myco p, ?). Then we will just go from there. Sigh.
I am not as nervous to do a 2nd IVIg as I was on the 1st one (tho' we really didn't have anything else we could do then since abx weren't abating the symptoms). I just don't wanna undo any good we have by doing another procedure. And if I can keep him from going thru it, then that would be good. But we will do what we have to do. And insurance covered the last one, so I am assuming they would cover this one...and if they don't, we have a precedent to say "well you covered it before!".
P.S. I hate PANDAS!
Thanks! I always forget about Saving Sammy as a resource. Our ped read the book, so that might work. I will go thru it and mark the pages.
Thanks for that link too. I need to go thru all the articles I have saved in my PANDAS folder & see if I have something there too. If I find anything else, I'll post here too.
If we do another IVIg, then we'll get the rx from our specialist. I have a stash of zith we're using now that's from where we were on Biaxin for 12 weeks (2 separate 6 week stints), and I still filled my regular rx. I am no fool!
We are in the process of trying to decide about a booster IVIg with Dr. K. I will be sending an email to the doctor but wanted to post here too because I value y'all's experience so much! We are at 14-months post-IVIg, and my son (almost 8) is doing very well. Some symptoms remain, and we've been told if he's less than 90% to consider a booster IVIg. This is tricky since he likely had early onset PANDAS, so what the bleep does 100% look like? Also, I found out this morning that he's been twisting & pulling out his hair (went thru this last spring with a myco p infection/high IgG & Biaxin fixed it). Plus he's had a loose tooth for about a month that is likely part of the issue. As far as the booster IVIg, I'm wondering:
Is it 1-day of HD IVIg or different dosage?
Do you go thru the whole thing of trying to be sure they don't get sick for 3 months like with a regular IVIg?
Are you likely to see a recurrence of old symptoms during recovery from the procedure?
How do you determine 90% recovered? I'd estimated at 85-90%, but I'm really guessing.
Is there a time limit? Meaning, after a certain point do you have to do a regular IVIg vs a booster?
Is there anything else I should know that I'm forgetting to ask?
Does anyone have articles about long-term, daily abx for PANDAS that they can share? I have been told by Dr. K that I will need to get our next rx from our local ped. Not sure how easy that will be. I would prefer to do another year of daily. Right now he's on azithromycin/250mg/daily. I was thinking there was something that talked about treating PANDAS with the RF protocol of abx until 18 or 21. Did I dream that?
We are 14-months post-IVIg. Doing well, but trying to decide if we are going to need a booster IVIg. (Am going to do another post to ask about that. sigh)
I don't know if I have much help but lots of empathy and a PTSD flashback. Art was a MAJOR issue when my son was in kindergarten in public school. He had his first major meltdown at school due to issues in art class. (When I got there, he was outside at the art trailer on all fours in front of the principal and vice principal, growling and acting like he was going to charge at them, ran from me, was throwing himself into the side of the trailer, screaming...sigh.) I have no good advice. At least you met with the art teacher. That didn't even occur to me since I was trying to run intervention thru his regular teacher and principal due to other issues he was having...we had lots of "fun" meetings. We were pre-PANDAS diagnosis. I did start going to the school and sitting in the office during art class, so he at least knew I was there. I also found that when I asked my son what had happened before HE got in trouble, there was usually some other disturbance in the class prior to his issues. The "fun" classes are also a bit rowdier than the regular classes, and depending on how the teacher handles it, the kids can get stressed out. It's also such a sensory-filled class, and that could be causing issues...not just fine motor. But all the materials and colors and unpredictable nature of not knowing what they're going to do in art since it could be anything. Looking back, I wonder if that particular teacher was a strep carrier or something. If it was art day, I knew there was likely going to be an issue. I hope you get it all figured out soon.
I would also check again for strep. Have you tested for mycoplasma pneumonia? My son went thru trichotillomania (about a month of it, so it was a longer OCD) with a myco p dx (high IgG) back in the spring. He was on daily zith when this happened, and we switched to Biaxin for 6 weeks to clear. It could have just been a one-time thing, but I wouldn't be surprised if it rears its ugly head again. My son would twist into knots and pull it out by breaking off hair. Is finally about back to normal. Was thin for a long while. And they can do lots of damage quickly. He was hiding his hair from me. I would find it in bunches behind his bed, under the couch, behind the TV cart. ::sigh:: Good luck!
P.S. Penicillin doesn't work on myco p, so you'd need a macrolide (zith, biaxin) or other class.
Yes...what everyone else said...it sounds like PANDAS & getting a plan in place would be wise. Especially if you know how bad it can get.
A word about myco p, and to repeat what Dedee said about Biaxin. My 7yo son reacts to this (had 2 episodes due to it this year), and we used Biaxin to combat the PANDAS symptoms. He was already on daily Zithromax when he got sick. We switched to Biaxin for 6 weeks both times he got sick. And his symptoms of myco p started were PANDAS behaviors first. In the initial case this year, he only had a slight cough with the myco p but lost most of the improvements we'd seen from the IVIg (major backslide). The Biaxin was helping within a week! The second one, he had PANDAS symptoms first (sleep issues), but then 3 days later was tired, coughing, fevered, weak...we saw more symptoms as a positive thing. We didn't even run the test the 2nd time & just called it myco p. We did IVIg last November, and he's doing really well...still on daily Zithromax.
I'm happy to be helping to plan this event. I look forward to meeting everyone who attends!!! It's been great working with Vickie and Tammy!
Thanks for taking the poll!
Kara...I fixed it to add a "not attending" answer. (It should let you change your answer if you wish.) This was my first poll on here. Wish you could be there too! I'd love to get us ALL in the same room...not sure the world could handle what would result from that tho'.
I totally agree about the feeling like you're "hunkering down into some kind of weird survivalist mode." I don't always view happy things as happy anymore. And I'm much less likely to socialize with "normal" parents. I prefer my virtual friends since they get me & view my ups and downs as normal PANDAS Parent's behavior. Literally, four seasons in one day is not uncommon in my house. And I'm much more like to go TOTALLY NEGATIVE about any little setback vs. taking a wait & see approach. I definitely have a minor form of PTSD. I drove past my son's old elementary a few weeks ago & was delighted to see the whole front of it caved in & posted on Facebook that I thought maybe my telekinesis powers had kicked in...it was only a remodel. This thing changes US in ways that nobody knows. And it sucks all around. And my heart is nearly always breaking for someone who has it worse than I do. I've not been on the forum as much lately, but I appreciate the cathartic release and camaraderie here.
We are still in the planning phase of the first ever PANDAS Parents Meeting. We are close to firming up the date (November 5, 2011) and the location in Indianapolis. More info will be available in the next weeks. We may post this poll in multiple locations...please ONLY VOTE ONCE so we can get an accurate count. You can message me if you have questions, but we are still in the planning phase, so specifics are not set yet.
Also, we will be doing fundraising for the event until Sept 5th. (PM me for details if you're interested.) Our hope is to cover the costs of the meeting/luncheon so attendees would only pay for gas, lodging, and additional meals.
I'm happy to help with this event and can't wait to give everyone a hug and thank them for all the support given to me. I suspect our agenda needs to have about a half hour (or more) just devoted to hugs & group hugs and pats on the back & high fives and so on and so forth. LOL!
The reaction to the pool can be a latex allergy. I posted something about that on here about 3 weeks ago but am on my phone & can't grab the link. You could search for it. My son was getting hives/rash from tennis balls...researched & figured it was the latex. I have also seen him react to poinsettias (related plant) but not latex gloves (tho' we were at the dr's today & he had a slight rash a bit later...oh dear). My son has also had issues if the chlorine level was a bit high in a pool or at the start of an exacerbation It could just be that your son is chemically sensitive too.
Vickie I'm glad it seems things are going okay. Hoping it stays that well!!! I know you do too. Having those myco p symptoms is probably a good sign too since if I'm remembering correctly he's asymptomatic to strep. Know that I'm thinking of y'all. ((((HUGS))))
Have you had that drink yet? If not, you may want to before I lay this on you
In my opinion, for the vet to vaccinate an animal that has an active infection, right before undergoing surgery, place on antibiotics (beneficial flora in a dog will be killed off just like a human) and revaccinate is almost criminal. Please educate yourself regarding your pets vaccines, as you would a child. If there is an adverse reaction, your pet will suffer and you're on the hook for the $$$ to try to fix it. If you decide to go ahead, ask the vet to at least use a little common sense, like waiting until the pet is not stressed from surgery, is not battling an infection and is not on antibiotics.
I had this argument with a vet once and you know her response? "You're right." I almost fell on the floor. I have often wondered if she changed the way she did anything. I doubt it, but the more of us who point out the obvious, the better our chances.
This is an article that I pulled up quickly that does mention the vaccines that your dog was given
Hey Kim...these were 1st shots vs. a revaccination (7 month old puppy we just got that was behind on shots). I had read a little bit (since I'm vaccine averse now), and I just thought since my dh didn't say anything about doing the shots that they wouldn't do them. Now I know better for what good that does me. And if I don't do the boosters in 2-3 weeks, they're not going to be valid. So far, the dog is doing well, but then it takes time to know they aren't In the stuff I've read, it seems that vets are more savvy to effects of vaxes on pets than MDs are on people. I may shop for another vet too. We'd gone over PANDAS with him a few weeks ago & gave him info & he seemed to get it...guess not.
And so far my ds is doing okay too. So that's good news. And I didn't open the bottle the other night...will save it for the next crisis.
You are just NOW starting to hate inside play areas??? I refer to ball pits as cesspools. They definitely rank up there with hot tubs (I call that human stew). Indoor play areas should be banned & more because a lot of parents see. It as a free pass to not parent. Usually their kid is right beside me being "adorable," while mom or dad are nowhere to be found. Grrrr.
Hope the remedy makes all things good again!!! My ds said he felt "wobbly" yesterday morning, & he said it again today. Will tell me it's in his stomach. He was exposed to a bunch of stuff yesterday (see my post about vaccine shedding...dog & human). He's gets this feeling at times and since he's 7 that's about all he will say ("I feel wobbly"). I'm not sure what it means, but my PANDAS radar is up again. Will be sure to give probiotic.
Let me also add that we had our dog fixed today, & they gave Bordetella, Lyme, & Leptospirosis vaccines (didn't really know they were doing those...gets boosters for all of those again in 2 weeks when the stitches come out). Plus, what we thought was razor burn on his belly from the groomer they said was a staph infection. Ack! So upside, dog will be on Keflex. Downside, this Mommy needs a drink (or that might be another upside). Pets are good things. Pets are good things. Pets are good things. Pretend I repeated that 1,000 more times. And believe me that my hubby is SO GLAD that getting the dog was my idea. Whew!
in PANS / PANDAS (Lyme included)
I usually hang out in the closed Facebook group, but I'm here today. Read this & thought Selective Mutism (anxiety disorder) & Googled & whispering is a sign. Maybe you already have all that info. But...it is very likely a PANDAS symptom and hopefully once you get the right med/treatment it will correct itself and she will be back to speaking normally without any tears.