[Went to sleep on his OWN for first time...]

Congratulations! I'm glad you're seeing good results.

[Parents of PANDAS children- did yoi have PANDAS?]

I remember having lots of ear infections when I was little. No tonsil or strep issues I don't think--didn't go to the doctor much even if I was sick. (BUT my husband was sick a lot & had a T&A when he was little & still gets strep). One of my older sisters had a T&A when she was 4. My dad had diptheria twice when he was a child. Looking at myself now at 40, I'll admit that I've had OCD & perfectionism tendencies over the years, including childhood. Auditory sensitivity when I was little and now...also sensitive to smells & lights & other things most people don't notice. (I like to think I'm just very perceptive. LOL) I'm sensitive to meds. CANNOT take birth control since it messes with my mind (it's effective in the sense that hubby does NOT want to be around me, so absolutely no chance of pregnancy). Can't take SSRIs (have done low dose before & combinations, but to try to take a regular dose either knocks me out or causes mania/rage...that's how I got my living room redecorated---bought a loveseat on a buying spree then needed a couch, drapes & new paint). I got shingles the day after delivering my son...have had 3 early miscarriages since then. Right now I have an enlarged left tonsil but don't test positive for anything & have no pain. I did have my EBV run back in Oct when this tonsil wouldn't clear up & it came back negative for IgM but my IGG (past infection antibodies) were high...didn't have mono, so it must've hit me as a virus at some point. No allergies as a child but got hit by a freight train last spring when every tree flowered at the exact moment here in KY...got tested & did shots over the summer since I'm allergic to almost every single tree & grass/weed now. (Stopped taking shots so I wouldn't have to take ds to ENT office/petri dish.) Saw Factor V Leiden mentioned on another post (a test a dr ran by accident), and I am heterozygous for that meaning that I have one gene & a slightly higher chance of clots. (Could actually be the cause for missed pregnancies.) Overall, I seem pretty healthly despite this kinda scary paragraph I've written. I have considered getting my medical records & trying to figure out if I had any behavior issues (depression, insomnia, OCD, etc...) during illnesses as an adult. I am planning to do a blood analysis a Natural Doctor here in town. And if I could get an infectious disease doctor to run every test known to man, then maybe I'd relax (assuming no positive results obviously).

 

So...do I think I had PANDAS...probably not. Did I have bits & pieces of the crazy quilt of symptoms...yes & still do. But saying it's a maternal passage would be stretching it since the dads have a role in the creation too. I do wish they'd do genetic testing on the parents. It could be that the variables are so vast that it'd be an infinite combination of genes that wouldn't particularly give any usable results. And we all know how love usually wins out in the end anyway. Even Beauty fell for Beast...he probably had lice/ticks...certainly no PANDAS mom would come near him tho'.

[Guidelines for tonsilectomy changes- published Jan. 2011]

Thanks for sharing this...VERY interesting to read! You'd think that they'd give abx if there's an infection in the tonsils anyway. That makes no sense to me. Guess since they're usually cauterizing for removal that they think there's no infection escaping. And I wish I'd thought about something like these guidelines even existing when we had my ds's adenoids out when he was almost 3 due to sleep disturbance & behavior/dev questions. Dr didn't take the tonsils because they weren't big enough (even tho' my husband had T&A as a child), but then our son got sick & basically stayed sick off & on for 1.5 yrs. Then there was chronic tonsillitis (never tested positive for strep then tho'--when they even bothered to test) & the hypertrophic tonsils were removed when he was 4.5. Great period of health & no big behavior issues until...strep came 1.5 years later & big PANDAS exacerbation. (Now we figure the behavior stuff we were seeing from 3-4.5 was PANDAS vs. it starting last year). Reading these guidelines makes it seem like a T&A woulda been a no-brainer from the beginning & I could have argued for it. (Honestly tho', we had A LOT going on during that time & the surgery was just one of many stressors, so my brain wasn't functioning at full speed.) AND if he hadn't been sick all that time, would the PANDAS have even happened. More to wonder about and a big can of worms opened. Grrrrrrrr.

 

This was really interesting. Thanks again!

[What now? Here is my story....]

Consider yourself lucky that found PANDAS so quickly. Many of us don't find it until months/years later (tho' all the while talking to our doctors about issues without PANDAS ever being mentioned to us). It could be that if you review PANDAS symptoms and consider past illnesses that you'll make other connections. Or if she was spreading out the OCD, there may be other current symptoms that she's been hiding. I'm in KY, so I can't help with specific doctors, but I would advise you to see someone familiar with PANDAS. The experts are all to the east of you, but it looks like you're going to get some good local referrals. Your doctor probably did a 10-day course of abx for the acute infection & think that will be fine. While it seems you're getting good suppor there (strep re-check, dr mentioned checking for a carrier), MANY (if not MOST) of our kids need much more than just 10-days. As you do more research you'll find there is no cure but some treatments do seem to keep it at bay...it's good that you're seeing positive results with meds. Get the book Saving Sammy/Beth Maloney. Visit the PANDAS web sites. And hold on. It seems that you caught it early, but some of us do find that subsequent exacerbations get worse. And kids can react to exposure sometimes, so their tests will be negative but symptoms will be off the chart.

 

Good luck on this journey. This forum is a great sounding board and provides many shoulders for leaning.

[Do strep and mycoplasma cross react?]

I'm not sure there are answers to these questions. Could be that's what they're trying to determine in their research. Maybe someone on here knows more about that side of the studies.

 

Mycoplasmas in general are nasty. I've done some research on the Internet, and it seems to me that there are just a lot of questions still out there about it. I think doctors are just used to prescribing abx for bacteria and assuming that it's gone within the allotted prescription. I suspect that if you started talking to a doctor about mycoplasma having the ability to go intracellular and hide that their eye-rolling reflex would kick in with a mighty hmmmph following. Grrr.

[Not panicking--just asking other IVIG experiences]

THANK YOU ExpatMom! I'm so happy to hear good news on here. Glad your son is doing well. I'm not sure how long you'd been in PANDAS prior to IVIG, but getting to "normal" is such a feat. We saw some more "stuff" last night, but ds went to bed early (which meant I got to go to bed early!) He woke up early but so far is in good spirits. I can sometimes tell in the morning what kind of day it's going to be by whether or not he's talking, and he was chattering away this morning & giggling too. So...I believe that it could have been a reaction to exposure since my dh has been sick for so long. Or ds was sniffly for a few days, so maybe a cold virus caused the blip. Or maybe a solar flare caused it. Who knows since it's PANDAS! I did take him off the new fish oil caps (had been giving him an icing formula b4)...seems strange to me that he'd react to that tho' but maybe? When you have good days and then there are hiccups, it's hard not to get kinda freaked out (even if you know that it can happen during this period after IVIG). Thanks again for recognizing my panic (even tho' I was trying to mask it) and relating your story.

 

I'm curious. What's your high dose of abx? We're on daily 250mg for ds(6 and about 46lbs). This is what I have been on the whole time since IVIG. Dr said we won't even consider every other day until 3 months. I don't know that my son could handle anything higher due to age/weight.

 

P.S. He's in the other room right now singing a song from a Scooby Doo episode. "Tell me, tell me...where you been hidin'...." The TV's not on either...just singing & playing. Cute.

[voice fluctuation]

I just had the thought that maybe there's something more at play with the voice thing. Some of you may remember when we were talking a few months ago about increased urination (which IS a symptom) that many of us recalled increase thirst at the time too. And I've read that strep can mess with the kidneys. Maybe there's something happening in the auditory system (especially since so many of the PANDAS kids are sensitive to sound like my ds). I know it's all brain, but maybe there's something specific that could be a marker.

[Results Finally]

It's great to hear this! I've not been able to add much to help you over the past few weeks, but believe me, my thoughts have been with you as I've read your posts. Whew! Good luck in continuing your dd's healing (and your own!).

[Not panicking--just asking other IVIG experiences]

No immune issues showed--all within range. I'm still thinking it's a flipping back of the pages. We've seen small things during the past 4 weeks but not days where they were present (but I know that can happen), & it's not present all the time either. We are still able to still reason with him, which is a very good sign IMO. It's nothing like where we were prior to treatment. Just wondering if anyone else had weeks of good, then a glitch, then back to good. Actually, 2 days prior to symptoms showing, he did something good that he hadn't done since April or May (wrote a 32 page story with illustrations). So I think we are still okay...just concerned. Plus, he's almost 7, so some things could even be age appropriate, but we'd been so bad for so long that this time post-IVIG has been really nice. Will see how he's doing today.

 

Thank you

[Not panicking--just asking other IVIG experiences]

Hello. I've not been on the forum as much lately after our ds(6)'s IVIG (Nov 18 & 19), but I have been reading (and doing a bit of posting too). We have seen really good IVIG results for our ds(6)...not at 100% but such a big improvement, so we've been having a bit of normalcy (whatever that is). Amazing! BUT.... The past few days, we've been seeing what I guess is a "flipping the pages backward" response. He's homeschooled, so there's not been any exposure to other kids (a/k/a germ factories). We have been going out a little but still mostly stay at home to reduce exposure. We made a day trip this past Wed to see family (hadn't seen anyone since Sept...the weekend I found out he had strep). AND to top it off, my dh has been sick for the past month+ (likely mycoplasma tho' dr didn't run test) & on/off abx to try to treat it...off when meds run out & on when he goes to get more since he's still sick. So obviously, ds has been exposed to my dh's illness & likely other things during our few trips out shopping or whatever.

 

I'm mostly just looking for a shout out from someone else who did IVIG for their kid. Wondering if a flipping back at 6-7 weeks post-IVIG was indicative of anything else or if the storm was weathered & things got better again. I know from reading past posts that some people didn't even see relief until this point or later. And believe me, what we're seeing is still tame compared to a full-blown exacerbation. We were just really spoiled. He showed residual symptoms and a few new things (as can happen) the first week that mostly cleared by the 2nd week...the past 4 weeks have been good. Then this past Wed on our visit to WV, I noticed some stuff...Thurs it was still there...Fri still there...Sat still here (and we see a little more each day or we're just looking harder for it). I had put him on a different fish oil on Wed after not giving it to him for about a week or so. I doubt that's the culprit but didn't give it today & will lay off it for a few days to see. (I also wondered if the fish oil did something positive but caused negative effects...like reduced inflammation which made him whack out a bit while the brain adjusts. Just seems that it wouldn't work that quickly tho'.) He's also on 250mg zithromax daily & a multi-vitamin with immune boost. I have done probiotic every other day...there were a few days I forgot tho'. Did the spit yeast test this morning, which just sat on top of the water...so I'm not thinking yeast. If he's fighting something off some bacteria, we'd likely NOT see the symptoms of it due to the zith (so if mycoplasma, I don't know if we'd see signs of it--I read somewhere that mycoplasma has a fairly long incubation period & is contagious for a long time too). He has been sniffly, so it could be a cold, which in that case the virus would just have to run its course. He does have allergies, but I don't give meds except for Benedryl at bedtime some nights (with a side effect of drowsiness ). Family members are VERY aware of our germ fears & would have stayed away if sick (actually one of my sisters did stay away due to possible illness, so I didn't get to see her--bummer).

 

I know that IVIG isn't considered a success/failure until 12 weeks with Dr. K. We have been very pleased so far. And like I said in the topic title, I'm not panicking but am concerned a bit. Looking to like-minded individuals for reassurance/advice/etc....

 

Thanks!

Sarah Jane

 

P.S. We only did the immune panel prior to IVIG. I knew he reacted to strep (low titers). Figured if mycoplasma was there that the year of zith would get it. Didn't do Lyme testing because it didn't seem to be indicated, but I've read parts of Cure Unknown & am sufficiently freaked out tho' & aware of its pervasiveness. (NOTE: Another really good read is Osler's Web. I kept getting so mad reading it that I'd have to close the book for a few minutes, or my husband would find me muttering & ask what was wrong & accidentally launch me into a whole rant that he couldn't escape.)

[voice fluctuation]

Our son had a high pitch voice that he'll use at times. I've finally figured out that it's a marker that PANDAS is at play. So weird how things manifest and how hard it can be to connect the dots. Grrr.

[ADHD type symptoms?]

Hey T! You may've done this, but ask the teacher if anyone has been out with strep (including her or the aide or their kids). Could even be that there's a carrier in the classroom. That's what we suspect was happening with our ds last year in K...he'd usually have good days when one particular boy was out (who was also the boy that picked on him/so there was some psychological stress involved there too. He'd also do really well after breaks. (Had a FULL week of good behavior after spring break.) I do also think that it's possible that the teacher is very likely focusing on EVERYTHING SINGLE LITTLE THING your son is doing. For all you know, there are 3 other boys in the class acting the same way. Because you're asking her about it, she's going to tell you, but the other 3 boys that might have been doing the same things probably didn't get notes sent home. Make sense? OR there's a chance she didn't see the other boys. I know when I would be at lunch with ds that I'd see the kids in line with several of them maybe jumping on each other...BUT the one that got in trouble is the one she saw. (My kid is an only child, so he didn't know how to be quick. He'd emulate the other kids & be the one that was caught. He was also an easy target.) Also, if your son's getting in trouble for interactions with other kids, it's usually the one that reacts that gets caught. (That's ONE good thing that came from the school psychologist...so the teacher used that as a mantra for a little bit until she forgot about it.) I also got the impression that K teachers ramp up quickly after winter break and actually start teaching new stuff for a few weeks until they start the incessant reviewing again before doing more skills testing. It seems that any issues they see with this quick change/transition is considered to be a problem the kid is having vs. classroom-induced. But seriously, no issues are ever classroom/teacher-induced, are they? Do you get the chance to observe the classroom to see if there's any "crazy-making" done by the teacher? I saw a lot of that in our class. I also found that if I could get my son talking about what else had happened in his classroom on days he got in trouble that there was usually another disturbance that didn't involve him. For example, there was a day when another little boy got in big trouble in art (totally separate from anything involving my son), but that incident stuck with my kid and affected him later that day. Stress was a big factor with his PANDAS behaviors at school since our ds is fairly sensitive. And he was scared of the principal but the teacher would always send him to the principal's office. Grrr. I have to stop now...can feel the PTSD starting...must breathe in, breathe out, breathe in, breathe out. Good luck!

 

(Also, we DO think our ds is getting a cold or something per our other messages. We've had really good behavior since about a week after his IVIG in Nov, so maybe we're just due for some flipping back of the pages here at 7 weeks post IVIG. Not getting too worried yet but concerned. Hoping it's just a glitch. I put him on a new fish oil after not giving it to him for a little while...maybe that's doing something. Changed other vitamins 2 weeks ago but didn't see changes then. We'll see how today goes.)

[FBA/ IEP]

I am so sorry. I don't have any words of advice. Just wanted to reach out & give you a pat on the back & say "there, there." IEPs are brutal! Hopefully, you did get something positive accomplished during the meeting. Hopefully.

[If any has had to fight for an IEP]

Hilarious!!!

[SOS: Exploding children!]

Hey...I hope your dr's appt went well yesterday & that maybe you got more abx since they did seem to be helping. I don't really have much to offer in ways of coping skills or advice but just wanted to offer my support. Certainly looking at other possible infections seems plausible. It's hard too because you're still waiting for the dx, so you're still in the land of "is this PANDAS or something else?". Dr. L seems to be the closest to you, & I don't know that any of the dr's particularly specialize in a certain type of PANDAS patient despite their different specialties. Here's hoping that your family sees some quick, lasting relief & that the new year brings better health & healing.

[Probably won't be logging on for a while.]

Emerson, I am so very sorry you're experiencing this loss. Please know that you are in my thoughts. Hugs from me from afar. Take care.

 

SJ

[Serious weight loss]

My son(6) didn't lose any weight this year (been dealing with PANDAS since Jan), but he didn't gain any either. Has grown about an inch or so tho'. He did stop drinking milk back in April or May which was a pretty good calorie source (will say the milk's sour or gone bad--so OCD), . Getting him back on milk is one of my healing objectives post-IVIG. (We're 4-weeks out, & I've offered it a few times to no avail.) He stopped eating cheese with the latest exacerbation (Sept/Oct/Nov), & cheesy stars were a staple in his diet (cheese sandwiches rolled thin & cut with a small cookie cutter--sometimes I do hearts & if I'm feeling really industrious, I use the tiny letters to spell words but they're kind of a pain). Said he was allergic to cheese. That's still going on a bit, but he has had cheesy stars a few times since IVIG. He'll say he doesn't want them if I offer them, but he'll eat them if I make them for him. (Yes, I know...stop offering. Us PANDAS parents have bad habits that we have to break in dealing with our PANDAS kids too, eh?) I should weigh him to see if he's gained anything yet...his appetite is still pretty variable & limited. (Btw, he doesn't have any dairy allergies...no gut issues. It's just an OCD thing, I guess.)

 

Good luck figuring this out for your son Joan.

[Last Minute X-mas Gift!]

These things are kinda cute in a sick, twisted way.

[Anasthesia reactions?]

My son reacted violently coming out of anesthesia both times he's been under for surgery (adenoidectomy & separate tonsillectomy). We were shocked at how WILD he was. Took about an hour to calm him down. They even asked about his reaction before his 2nd surgery, and we thought they'd do something to avoid/lessen his reaction. Nope. Same thing. Wild bucking bronco...totally freaked out...at least an hour to calm. Whew. It likely has to do with the epinephrine (adrenaline) solution they used (& maybe it's also in the anesthesia(?)). Plus there was probably infection involved in adenoids/tonsils. Helped me figure out retrospectively that we probably were dealing with early onset PANDAS.

 

Glad it seems your surgery went okay otherwise...at least you're on here typing. Hope you have a Merry Christmas Emerson!

[3 weeks post IVIG - update!]

YAY!!! So happy to hear your positive news!!! Glad to know that a family is getting their life back.

 

We are 4 weeks post-IVIG, and also in a good place with our ds(6). (Almost put "very good" in there but am still waiting for a shoe to drop or the bottom to fall out or whatever that feeling is that we all have when things are going well.) It is no less than amazing the difference we have now. I know you know what I mean amyjoy.

 

Keep on keeping on.

[Any Eye Symptoms After IVIG?]

No eye issues for our ds. Would be worth talking to your dr about tho'. I did want to let you know that we were told the headache post-IVIG results from the brain swelling going down & the fluid flowing back into that area. (No mention of intraoccular pressure.) Our ds(6) did not have the BIG headache but did have a headache that we treated with Tylenol.

[Address for Dr Cunningham]

I wonder if those docs realize how much time we spend thinking about them. Hope our positive vibes keep them happy & warm. I know when I had my IVIG scheduled, I was very aware that Dr. K was out there somewhere & I thought about his health almost as much as I did my own son's.

 

My regular card list was very abbreviated this year. Immediate family & a few friends (who have stayed in touch). I didn't plan to send them at all, but we've hit a good patch. We even put up the tree.

[Address for Dr Cunningham]

I got an extra box of cards to send to all the docs too.

[How to Live Life with PANDAS- Last Post on ACN]

I know you wrote this to the PANDAS "kids", but you knew all us PANDAS parents would read it too.

 

I'm excited for you! Sounds like you know what you want and are making great strides to get it. (Actually, it sounds a bit more like you KNEW what you wanted, MADE great strides to get it, and GOT IT!) I must've joined the forum during your "break", but I truly enjoyed this post from you. Thanks for giving us a few days on here to commend you for your insights and to wish you luck on your life's journey. Thank you very much for the reality check too! BEST WISHES!

[strep in the classroom]

Does this make sense?

 

If the body has an autoimmune reaction and is always making too many antibodies to strep, then when the strep appears in the classroom, our children would already have tons of antibodies circulating in their blood. It would take care of strep in the sense that they wouldn't develop an infection of the throat/sinuses, but the body is then activated more, makes more antibodies, which react with brain tissue/cause inflammation. . . ..so exacerbation/behaviors turn up.

 

Could this be why many of our kids are asymptomatic, but are the canary in the coal mine behaviorally?

 

I'm just a Dr. Mom, but that's kind of the way I look at it. ANYTIME the immune system is tripped, it can trigger PANDAS symptoms, even if the kids don't get "sick." That's why allergies, viruses, etc... are triggers for this too, not just bacteria. The body is smart, but still has to go look at whatever the invader is to determine how to react & ramps up while it's doing the look-see. I'm so glad I'm homeschooling.