SarahJane
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Posts posted by SarahJane
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Thanks for all the info everyone. Good to hear of successes! I am going to contact our ENT & see if he'll run some tests to be sure. MP is definitely a big one & I'll try to find the Dr. B list. I'm pretty sure no Lyme...wouldn't even know how he'd have gotten it. Will do more research to be sure I'm not missing anything. I will likely try to get some abx because to have behaviors up until IVIg will not be pleasant (understatement of the year). Am hoping that he calms down some very soon. We are still seeing new things crop up...and we're a month out from the strep dx & did Omnicef & 2 rounds of Zith for an ear infection behind that.
@Healingthedude: tips for the IVIg would be much appreciated. I figure we'll take our portable DVD player/new DVDs, Leapster/new games, books...beyond that I'm not sure. (You said it worked for 1.5 years. I'm sorry I don't know your history. Was there a relapse? Doing another IVIg? Good luck!
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I'm not in TX (so I can't offer dr advice there). I'm just now getting ready to get treatment for our son (dx was yesterday, so I'm still sorting thru all that too). I did want to lend my support to you tho'. We know what you're going thru, and you can find good info on these boards. Good luck and find courage that you are not the only one this is happening to...it might feel like it but you're not. We're here. WE'RE here. WE'RE HERE!
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I can't give advice, but I can tell you what I'm doing this year. Nothing. My ds(6.5) is heading to IVIg & I'm not muddying the already compromised immune system with a flu shot. I suppose we will be playing A LOT of board games & Wii & watching TONS of TV this coming season. We already homeschool, so that exposure is covered. My son got strep 14 days after his 2nd H1N1 shot last year...our life changed about a month out from that dx'd strep & then we had another strep dx in Sept. This year's vaccine has H1N1 in it, and I'm not taking the risk. I'm sure that there will be some takers that go all out with a full explanation of the benefits or evils of vaccinations. All I will say is that I'm not getting him the shot...and I'm not taking one either. (I'm not sure what my dh is going to do.)
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Had Dr. K call. Got the dx. It's official. Said there are several things that cannot be explained by anything else but PANDAS. 95-100% PANDAS confirmed. No abx because we've already seen failure. No steroid burst because it's mainly a diagnostic step. Straight to IVIg. Whew. Very overwhelming.
We'll still have to talk & set it all up & such. My question to y'all: he mentioned the IgA test...that's it. (Already know he has low titers with acute infection, so ASO/DNase B aren't necessary.) Those who have been on the precipice upon which I now stand, would you recommend that I try to get other tests prior to 1st IVIg?
I have an ENT that might run some tests. OR just do we just do what the expert says now that I've got him involved. Let go of the research & embrace PANDAS so to speak. I'll never know what started it all, so do I keep searching & hypothesizing or stop. (I know I'll always wonder but the questions really have no answer...my hypotheses are numerous & maybe one of them is correct, but I'll never know.)
And let me just give a BIG VIRTUAL HUG to everyone out there that has gone thru this and continues to go thru this. I'm not a huggy, touchy, feely person (especially now that my kid has PANDAS...keep your germs to yourself), but WTF?! We have to find this...usually by accident/luck. We have to do the research. We have to endure the doctors who treat us like we're crazy when we bring this up to them. We have to fight for our kids to get the treatments for something that totally exists (hello medical professionals!). Meanwhile, some mom (or dad) is picking their kid up at school after a great day and planning to stop at McDonald's to get a Happy Meal before soccer practice and then they'll go to grandma's big birthday party later. I liked the other analogy used on here a bit ago too: somewhere a lucky guy is having a heart attack. Nail on the head. And I can't help but get existential (not a hugger but a thinker)...why us, why now...and now what.
I'm off to process while my son sleeps the day away due to his insomnia. Or I might watch something trashy on TV and give my brain a break. I'm undecided right now.
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Why would Zithromax not be working? Think it's strep? Here's the story:
Took ds(6) to doctor when son's behaviors came back after a good summer...strep/PANDAS?...no per doctor/negative swab/ran blood tests...BUT culture grew/yes strep...PANDAS?/no per dr/titers too low. (Yes, I know that doesn't matter...she doesn't.) Treated strep with Omnicef & new OCD went away with in 5-6 days. But other behaviors came back or continued (not sure)...strep test again/negative. Urgent Treatment...found an ear infection & we treated with 5 day course of Zithromax (200mg 1tsp/1st day, half tsp days 2-5)...worked...insomnia but most behaviors mostly gone (I took him bowling one day last week!). Off for a day when px ran out...behaviors back. Went back to Urgent Treatment...got the abx speech but also got abx...zith again with higher dosage of 200mg 2tsp/1st day, 1tsp days 2-5. Gave the increased dosage 2 days & thought it was working 1st day...still insomnia but then a tantrum & now OCD is back...one old from Sept & one new (counting to 1000?!). We decreased to half a tsp last night, so I'll see how things go today/tonight. He's still sleeping as he didn't go to bed until about 6am. We have our 1st call with Dr. K on Wed. He didn't order any blood work prior to the call, but I figure we'll have some to run this week...maybe titers will help us know (they were low/normal back in Sept during an acute infection).
I guess if he somehow has strep again (which he did tell us his throat hurt Fri but is usualy asymptomatic) then maybe he tested negative while on abx? Or maybe he was just exposed as another PANDAS parent hypothesized. He was also coughing, which made me wonder MP? They did a flu test & rapid strep...both negative. I will call today to be sure the culture didn't grow. I guess if it's strep, that could explain why OCD could be back (Zith doesn't really treat strep, right? Just PANDAS symptoms, right?). Even MP could bring OCD, right? Or it could be gut issues (thanks to another PANDAS parent) but he doesn't usually complain...will try yogurt & I did get some probiotics at Whole Foods yesterday. We were so hopeful he was back after almost a month's "hiatus." Oh...my husband & I are both on abx right now too...so we shouldn't have anything right now.
Thanks!
Sarah Jane
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Good tip on the ears. I've of course been focusing on running out of abx vs. how to get more.
I'll start asking around to find an immunologist (another good tip). I might have an ENT that would be friendly but may not be able to do everything depending on treatment. But as for a pediatrician, I'll be looking around. We're okay with going to Chicago for consults but do need local medical support.
I am a bit concerned no tests were ordered yet. I'll deal with that on the phone call tho'. And really, I'd probably have worried depending on what tests were ordered anyway. That's my mode right now.
Have a GOOD day!
Sarah Jane
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I don't mean to make light of this, but you've posted in a place where we're all gonna think PANDAS/PITAND. We see it everywhere now.
I'm fairly new to all this but am a quick learner. I'm sure another poster can give more info or you can just take a look around the forum. Even if titers are low, it doesn't rule anything out because they aren't always high. (I'm assuming the strep A swab was negative/culture may grow). And if PITAND, it could be any infection (or vaccines/shots) that causes reactions/behaviors. Seems mycoplasma & Lyme are other culprits for behaviors. Done a flu shot recently? If he's 3, I don't think there would have been any recent vaccines unless you were off on the schedule.
I recommend that you keep a good record of behaviors right now. If you get into the middle of this & it is PANDAS/PITAND, you may not remember everything. Go back & record what you noticed in June too & what was going on (strep exposure, shots, etc...). I've been going thru my son's medical records and am amazed how behavior issues were flaring with infections/vaccines and I didn't always make the connections. Or he'd be dx'd just before or after the behaviors. You think once you treat with abx that it can't be the illness causing behaviors...not the case with PANDAS/PITAND. And watch for the idea that you need to put him on SSRIs/meds for the OCD/tics...microbes can cause mental illness. Drugs just mask the symptoms.
Be proud that you're being proactive! It's unlikely a doctor would mention this to you as a possibility. AND if they brush you off, don't be discouraged and keep on researching. I let 4 months go by after being told it wasn't PANDAS & was further placated by a good summer until strep A reared it's head again & everything came back. I recommend the book Saving Sammy too.
GOOD LUCK!
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I sent Dr. K a ridiculously long email yesterday. (I just cannot edit when it comes to this stuff!) I detailed my ds(6)'s Dec '09 strep/behaviors, Sept '10 strep/behaviors, & my suspicions of early onset due to various things that led to my sons tonsilectomy just before he was 4.5 yrs old. (No major illness/issues for 1.5 years after tonsils out...had been sick off & on for 2 years prior to that.) Dr. K replied that there's "a high degree of suspision for PANDAS diagnosis" and gave directions to set up eval. I have a phone call set for next week. We are willing to travel up to see him but set up the call first since we are out of town. (Anybody think I should just go vs. doing a call 1st?) I already have all our records to send up there since I've been doing my own medical research.
He didn't tell me to run any labs tho'...think that's bad? Plus, what do you do if you get a dx, but your doctor didn't believe you? How do you get treatment? Do you go back to the person who acted like you were crazy for even suggesting it or just seek a new friendly? (I'm leaning toward the latter.)On another note, after having another doctor tell me not PANDAS last week, I took ds to Urgent Treatment on Sat because his behaviors were still there. I thought he still had strep but I was wrong...EAR INFECTION!!! Didn't even do a swab & I didn't push for it figuring we'd be doing more tests soon enough. Got them to give us Zithromax & have had 2 rage-free days and we can reason with him...he's in a much better mood. Insomnia continues tho' (yawn!) & so our days/nights are confused. So I'm happy I got abx for him but nervous I only got 5 days worth. My dh & I got checked out too while we were at Urgent Treatment. I got abx for my throat (not strep A but possible other strep/staph since they ONLY test for strep A...thought that was interesting!...especially since some of us are thinking PITAND). DH got abx for a sinus infection. All of us are on abx together...only PANDAS/PITAND families could know the significance & how happy that makes me.
Hope you have a GOOD day!
Sarah Jane
P.S. I'm reading Dr. Bock's Healing the New Childhood Epidemics/4 A's book right now. VERY INTERESTING!
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You are in my thoughts & prayers. Sending positive energy right up to you & yours! Thank you so much for your support. Please know that you have all of mine. I hope this passes easily & quickly & that you get to rest easy.
Sarah
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I found some Omega 3 gummy vitamins last night & tried to give them to ds. He said "what are these?" Gummy fish. "I'm not eating these. They taste HORRIBLE! Blech" And he proceeded to spit them out...so, I tried.
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First off, I'm not a doctor. But your son's comments reminded me of disassociation/depersonalization. I actually found that term as an adult to describe the feelings I would have as a child (especially during my parent's divorce). Basically it when you don't feel real (maybe because of circumstances) but you know you are real & that is just a feeling...you feel outside yourself. It reminded me of the question my ds/6 asked one time last spring after all this had started. He wanted to know if there were end credits when you die & I told him no that this is real and not a movie. Maybe that's a good way to describe PANDAS kids...they're in there but can't get out & can't always control what they do, so maybe they all wonder if it's real. I don't know that he would have a full blown disorder from one comment or anything...again, not a doctor (or my son would be on abx right now) This has made me sadder if that's even possible. Here are Wikipedia definitions:
http://en.wikipedia.org/wiki/Dissociative_disorder
Dissociative disorders[1] are defined as conditions that involve disruptions or breakdowns of memory, awareness, identity and/or perception. The hypothesis is that symptoms can result, to the extent of interfering with a person's general functioning, when one or more of these functions is disrupted.
Depersonalization disorder (DSM-IV Codes 300.6[2]) - periods of detachment from self or surrounding which may be experienced as "unreal" (lacking in control of or "outside of" self) while retaining awareness that this is only a feeling and not a reality.
Hope you have a GOOD day!
SJ
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Wanna join me in buying copies of Saving Sammy in paperback & sending them to doctors, OTs, SLPs, ENTs, school personnel, libraries, etc....? It's due out on Tuesday per Beth Maloney's email. I'm planning on buying at least 10 copies (probably more) & donating them in the medical community (& periphery) to help spread the word that this thing is real. We're undx'd (ds/6) & have gone thru 2 doctors now since my Thurs appt didn't go well (so I'm gonna get the opportunity to cross a 3rd off my list soon I guess). When I saw that the book's coming out in paperback, I thought that buying copies & distributing them to people who should be aware of it is the least I can do while I wait for help. Maybe I can make it easier for someone else to be taken seriously. I can't force them read it, but I can buy it for them.
SJ
P.S. Maybe we could even swap lists to send to some doctors or school personnel who will know it's from us even if we send it anonymously.
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I'm homeschooling ds6 (undx'd PANDAS) right now due to major school issues in kindergarten (strep hit in late Dec/behaviors in Feb). We were also waitlisted at Montessori but since we just had a 2nd bout of strep, not paying for private school is probably a good thing. I think part of being a new homeschooling parent is unschooling yourself. For example, I've been kind of a stickler about starting at 9am so we could get done...mad if he's not in our school room. BUT, he's been sick. BUT I didn't know he was sick for a few weeks--asymptomatic strep for a few weeks with onset of behavior changes to finally clue me in, aren't I lucky?). Today, we started later & it was great...am actually gonna adopt a later start time for a while & work back to 9am or so. We accomplished A LOT in just a fraction of the time it would have taken if I'd forced him out of bed & to the room at 9am. He's pretty good at focusing on school stuff tho'...of course, any distractions just affect him since he's an only child. I did find today that a "bribe" to watch an educational DVD when all the work was done was a great motivator & any time he got off track I'd tell him that was gonna be that much longer before he got to watch the DVD. Maybe something like that could work. I'm not sure what state you're in & how regulated you are (or that it matters if this is a short-term solution), but just realize that just about anything can be school & present the lessons in ways he can do them. If you have to do math verbally vs. worksheets, that's okay. Or if you want to spend a whole day at the park for recess, that's okay. It's your school. You could also have a Plan B lessons available when focus is an issue (day of art, cool science experiments, easy field trip, or Wii for recess to teach various skills depending on the game). Think about what kids do when there's a substitute...hardly anything. Every day doesn't have to be jampacked with learning because that's NOT what they get in "real" school (tho' Montessori may be different). It just feels like it should be that way when you're at home. Having the Montessori background may make having the lessons be fun & hands-on easier for you. I am still using an eclectic method vs. buying a cirriculum. I've been doing a lot of work to assess where he actually is in subjects so I can teach him new things. There's so much stuff out there & as long as he can do what he's supposed to be able to do, then that's okay.
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We are currently undx'd PANDAS (ds/6), but I'm wondering if others go thru this same scenario. You can be having a good day, out & about (yes, in public...the day's that good--fit for public consumption, I say), and you think things are turning a corner (and that you're slightly crazy to think there was even a problem), and then BAM! Your kid does something that you totally did not see coming (full tantrum, runs from you, does something to another kid, refuses to do a simple request--like leave when you've given ample warning, etc...). The whole day comes down to that 60 seconds & his bad "choice". No amount of reasoning can get them to understand what they've done (while you're sitting in the car having gotten out of everyone's eye ASAP & then rehashing everything when you get home). In fact, reasoning makes it worse & makes you madder because they get more defiant/obstinate as time goes on. By the end of it, you've spent hours over that 60 seconds with increasing punishments, secondguessing yourself, feeling like an awful parent, knowing that all your friends would've handled it better with their kids (as if they've ever had to worry about this stuff), wondering if he is just a brat choosing to do these things, and all the other stuff that runs thru your mind. And what's worse, is you never know when it's going to happen, so you're blind-sided every time. And, is the stuff always so bad OR is it that we deal with so much stuff at home that we are mortified when others see it tho' sometimes it's actually age-appropriate? Know what I'm talking about? Can you relate?
Let me say also THANK YOU to all the posters out there. This board is invaluable! Have an appointment this week to talk to another dr (not a specialist yet...local dr to see if they see what I see or want to only focus on behaviors vs. cause). Am working to organize the medical records so it's easier to see than a jumble of pages in a chart. I think that a lot of the behaviors we saw prior to these dx'd strep cases were likely PANDAS too as many cases of sinusitis & "viral" pharyngitis earlier w/o strep testing, but we were put on a different path that does not fit due to a speech delay. But even if only recent history is considered, it's still compelling (to me anyway). Strep in late Dec/major behavior changes at home & really in school in Feb - May. Good summer. Strep dx'd in Sept but likely hit in Aug (thought it was a cold)...took him in because the old behaviors came back & this time with obvious OCD (which abx got rid of in about 5-6 days but still some rages/behaviors continued--2nd strep test negative on day 9 of abx). Titers "negative" (after I got dr to run them because swab was negative & it was kinda the condition I had to go with to get abx/Omnicef while culture grew--yes, it was positive). Did get referral to pediatric neurologist & psychiatrist tho in a "here make your own appt & let us know what happens way" (so you know I've been written off there). And I brought PANDAS up in May when I found it & it fit...was told behaviors had to be sudden onset with the strep & I had an anxiety dx, so I went with that. It seemed sudden to me...maybe not immediate but sudden. But when 2nd strep hit with behaviors, I started banging the drum again. Again told the behaviors had to be sudden onset. Is that sudden from when they got dx'd or when they were getting sick & everything was getting ready to hit or sudden in that after the abx is done it's still not gone so it keeps going until behaviors appear? I think sometimes the dr's want the kid to start OCD/rages/etc... as soon as they walk back in with a positive test...even then they'd probably not believe ya. Ahem. I know. I'm preaching to the choir. Sometimes the spirit just moves me when I get on this topic.
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My 6-yr-old son just went thru The Listening Program discs 1-10 (finished 10 last week), & we are supposed to repeat them in reverse (which I probably won't do). However, we are undx'd PANDAS/PITAND. I'd found it last spring after BIG change in behavior after a strep infection at end of Dec, but dr talked me out of it. I'm back now trying to get a dx (wish me luck!) because guess what--the behavior stuff is back & he has strep. He was just sick back in Aug after a good summer...no strep symptoms/tho' he doesn't get them--just seemed like a cold, but after change in behavior I took him in his swab was negative but culture grew positive (got them to do the titers tests & both were "normal"). Luckily, I was able to get antibiotics(Omnicef) at first visit even tho' the swab was clean. At least I'm homeschooling this year because I couldn't handle all the calls to the school again this year & a myriad of other reasons. I'm actually taking him back to the dr today for hopefully another round of meds because he still seems sick.
Here's our experience with TLP. The OT recommended it because she'd used it with her son & saw results. I bought the program/headphones & didn't find doing the 15 minutes twice a day too bad since it was over the summer, but I think it would be hard if your kid was in school. The first 4 CDs were okay & I actually saw some results there, BUT it could've been that he was feeling better since he wasn't in school anymore too. Then with 5 & 6 I got a negative change in behavior...he was in trouble all the time, but when I asked the OT she'd never heard of that reaction. I now wonder if he was feeling bad during that time & it was an exacerbation of some sort. For 7-10, I didn't see any results, but he was sick during this time...that's when he caught his "cold" that ended up being strep that I didn't find until the week of the 10th CD.
So...I guess I'm using this first post of mine to get my story out & say that we didn't get much out of TLP. I actually talked to the OT yesterday & since we were only going every other week anyway, I'm taking at least a month off (likely more) while I get this PANDAS/PITAND stuff settled. I don't see the point of going to OT & treating behaviors that way when it's very likely something he really can't control. However, at his last OT session, he had a huge tantrum, so she's writing up something for me to talk about how his behavior was good over the summer & then she saw a change when he was sick. At least I'll have that to show doctors.
All the Best!
He didn't tell me to run any labs tho'...think that's bad? Plus, what do you do if you get a dx, but your doctor didn't believe you? How do you get treatment? Do you go back to the person who acted like you were crazy for even suggesting it or just seek a new friendly? (I'm leaning toward the latter.)
New neurologist yesterday. :)
in PANS / PANDAS (Lyme included)
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I'm happy for you! It seems like you really got good care & found a doctor that will treat YOU. Having someone that believes in PANDAS is big (even if she looked at the symptoms vs. the cause). Very happy for you. Now GO TO BED Young Lady!