eclairuse

I want to start by thanking EVERYONE, again, for all of the advice, and goodwill. The support in this forum is amazing. I think that this has been the most overwhelming week of my life, save for maybe the week that my son was born! So, here's the update (and some clarifications): I'm not sure where the idea that I was ignoring the advice to find and consult a PANDAS specialist got started, but I emailed two doctors the first day that I posted here, thanks to the contact information that I received via PM (Many, many thanks again!)! One particular PM led to an email exchange with one of the recommended PANDAS experts who offered to contact my child's pediatrician. Unfortunately, his Ped (the one who refused the antibiotics) went on vacation, and won't be back until next Monday. I did restart my son on his corticosteroid asthma medication, in the prescribed dosage by his Asthma doctor. This wasn't self-dosing. It was leveraging a medication that was already prescribed, and hoping for results for another condition. He takes this medication every year from fall to the beginning of summer (when his worst symptoms temporarily abate). He had an appointment with his asthma doctor in late August (just before the "cold" that seemingly set this whole mess into motion), days before the start of school (as always) where she renewed all three of his prescriptions. He also takes an OTC med (Zyrtec) that we usually use as a remedy for his earliest symptoms (post-nasal dripping & congestion), before we have to resort to the corticosteroid by nebulizer a month or so into the fall. We do this because the nebulizer is sort of a hassle, and as long as Zyrtec & Symbicort keeps him clear I don't start the more potent stuff. We hadn't gotten to the point of absolutely having to resort to the Pulmicort (his other symptoms weren't that bad yet), but I took him off the Zyrtec anyway, in case it was exacerbabing his condition (more on that in a moment). So, this sword was intended to kill two birds with one stone (not that it worked, but his asthma symptoms are signficantly lessened.) I didn't notice any difference in his OCD after restarting the pulmicort. I figured it was a longshot for the OCD (not the right kind or strength of steroid, I believe), but it was something that I could try, while I worked through the other issues. I didn't administer the Motrin, because I coldn't find any that didn't terrify him (long story... an element of the OCD presumably). On Monday, we were back at the Pediatrician's office, obtaining medical records, and test results (where I learned that the reference lab was behind, the ASO Titer test won't be back until Thursday). I, instead, obtained my son's medial records, much to the consternation and chagrin of the records staff. They wanted me to wait until the doctor could sign-off. I insisted, but they complied. My destination, with records & additional information provided here, an by Dr. J in hand, was the University of Michigan. An unexpected (by me, because I didn't check the weather) practically sent DS into the fetal position (he's not usually frightened by storms, so...), so I took him home, where he was begging and pleading to go-- he was sure we were going to die, and it's quite a haul under the best of conditions, let alone in a storm with a hysterical child. I was frustrated, but ultimately glad when he calmed, at home. On Tuesday, we headed to the psychologist (the appt. made last week). I feared this would be a waste of time, but it wasn't! While the psychologist is convinced that this is PANDAS too, he was very instrumental in helping me to explain what was going on, and why he's been feeling the way he is. And, apparently, hearing it from someone other than Mom, is more believable, LOL! My son is exceedingly bright, and facts and figures get through even this haze of OCD that's clouding his existence. It didn't alleviate his OCD in the least, but it did start to give him hope, and he loved the psychologist, and confided in him. And, he felt relieved on some level. So, I'll take it! Today, is the real win. I took him to the Pediatric Neurologist, as originally planned. I was armed with his medical records (sans test results), an article, several emails, and unshakable resolve. His neurological exam was normal. There were, of course, no tics present at that time. The neurologist was at first skeptical of any chance of PANDAS (due to the lack of chorea, and no tics), but also found it very suspicious that he developed the OCD so rapidly. He took the article, and read it! He said, "I'm not going to pretend I'm an expert on this, but I'd like to rule out of few other things that have me concerned. BUT, I'm going to prescribe the antibiotics." YES!!!! He took the recommendation from Dr. J, and prescribed 500 mg (2X/day, 1000 mg total) of Augmentin, for 4 weeks. He also said that he'd extend the prescription if I wanted, at the end of that period, unless I agreed with a definitive "other" diagnosis. He used to be a pediatrician, and he was a bit upset that our Ped didn't just prescribe the antibiotics. He agreed that the potential benefit far outweighed any potential risk, and if DS improved, or got complete resolution, then we'd likely have an answer (barring anything else cropping up). He agreed that he should stay off Zyrtec (for at least the time being) as one physician that I spoke to told me that Zyrtec can cause, or exacerbate anxiety. He wanted him to stay on the Pulmicort, because he could hear some congestion. He wanted us to come back later for a 1 hour EEG, and we had to schedule an overnight EEG (next week) as well. Listening to all of DSs symptoms, and all of his other history made him want ot rule out other potential conditions that might cause this sort of exacerbation as well. And, I can live with that! I want the right diagnosis (I believe it's PANDAS), but we can at least "do no harm" now, with the antibiotics. So, he's on Augmentin. And I am hoping with every fiber of my being that he spontaneously improves, and that it's not some of the other things that could cause the same or similar symptoms. If nothing else materializes (brain tumors, etc...) and he's either slow to, or doesn't respond to antibiotics, this neurologist says that he is completely willing to go to IVIG. He said he's not an expert, but he's willing to learn. And, he knows that mothers KNOW their kids, and when something is really wrong, and he trusts that. And he did nothing that made me suspect that he was talking out of the side of his mouth. I think that with the help of Dr. J, and this neurologist (and hopefully my Pediatrician will get onboard, when he gets back) that we can do this. Again, thank you all so much. I'll keep you updated.

eljmom, While I've been here for less than a week, and don't have much to offer, other than a sympathetic ear & positive thoughts, I get what you're saying, and I more than understand that every situation, and unfortunate journey down this road is unique. There's a lot of information, and complicated scenarios. And, a LOT of diametrically opposed ideology, and opinions... and advice! It's a lot to take in. And, we try to absorb it in the shortest amount of time possible. If there were any simple answers, or even simplistic paths, there wouldn't be a need for a "here", save for moral support, which we can all do with. This condition is frought with complications-- due, in large part, to unknown, and uncontrollable variables. And, our personal circumstances (which are never shared in enough detail to give a complete picture)conspire to complicate things even more. Each of us knows, intimately, what factors are at play with our stricken children, in our homes/families, in the medical community that we ultimately encounter, and choose to or are restricted (for various reasons) to working with. I guess what I'm trying to say is that I understand. I understand why you feel paralyzed. I understand why you're frustrated. And, I understand that this screen between us (and privacy, anonymity, and probably the miles) prevents me from seeing all of the details and factors that makes your situation different from mine. I've got a very bright, high achieving, happy-go-lucky little boy, who went to take a pre-bedtime shower and... POOF! Severe OCD. Just like that. A week is not nearly enough time to stop feeling shocked, stunned, frozen... you name it. But in the days since I found this forum, both my level of knowledge and understanding have grown, but in proportion to my 'overwhelmedness'. I've shared a LOT, but not everything (nobody does... not even possible). I've been more focused on "What to do to help him... what next" than giving updates on what I'm thinking, what I'm planning, who I've talked to... what's been done. While every single shred of advice, from every single member (here in the open forum & via PM), has been poured over, valued (apprecated more than I can express), considered, and stored, I'd be lying if I said that I was going in every direction tossed at me. Ultimately, it's me and my son... and the decisions are mine to make (or screw up, heaven forbid). I know what *else* is going on, and what other factors have to be accounted for, what our resources are, and ultimately, what I believe, or know to be right. Still, realistically, my fervent beliefs won't necessarily bend, overnight, medical practitioners to my will. Not for lack of trying, though! Non-supportive, or non-believing family members may be even tougher. I've made some strides this week, even in my state of shock, but there's still much to be done, and I envision many battles ahead, unless my son is one of the "lucky" ones who have spontaneous and permanent recoveries from antibiotics alone, never having to pursue the other prospective treatments. Gosh, I hope he is! But I see how this misunderstood and mistreated condition(s) can put maximum strain on your ability to cope, your family, your finances, etc... This community is clearly a wonderful, and supportive one. So, take what you need, and leave what you don't. You know, better than anyone, what that is. No apologies are necessary. It's all that can be reasonably expected of anyone. It's what I did, and will continue to do. And that doesn't, in any way, diminish my sincere appreciation to every contributor, and every piece of advice-- even the ones that were unfeasible, or unrealistic (for my situation). They can't have known, so I take them in the spirit in which they're intended. I don't think you've lost any friends here. But, I know that you've gained one.

Hi everyone. Thank you, again, for all of the responses. I've been reading, researching, and making calls. And, I didn't want you all to think that your advice, wisdom, and even good wishes were falling on deaf ears. No, I've read every post & PM in great detail, and I sincerely appreciate every, single one. So, here's where we are: 1) As tempting as the proposition is, especially when feeling this desperate, I'm not going to lie to get antibiotics. My rationale for this is that I need to remain credible in this sea of "disbelief". Even though I am *rapidly* losing faith in physicians, I don't want their faith in my honesty and forthrightness to fail. That might hurt my son, even more. I can't risk it. That, and my son is nine years old. He has no other problems, and his ears work just fine. Before I could even suggest an imaginary illness, he'd be shouting, "Mom! That's not the truth!" And then, with our luck, he'd develop a new verbal tick a la, "Mom is lying. Mom is lying. Mom is lying. Mom is lying." I will do absolutely ANYTHING to secure the health and well-being of my son, but I truly see how lying to get the antibiotics might seriously backfire, and hurt his chances for treatment. Please don't think that I don't value the sentiment (oh, how I wanted to), or appreciate the suggestions. I'm just trying to calculate and measure the potential outcomes, given the circumstances. 2) I received some PMs about PANDAS physicians, and I'm going to contact them first thing on Monday. Oh, how I wish I'd seen those emails earlier yesterday (I saw them late in the evening)! Now, we have the weekend (that's seeming longer & longer) to stew on this. I'm looking forward to Monday! 3) After reading tons, and tons of your personal accounts of this condition, I think I've come up with at least a temporary plan that might (I really hope) at least provide relief from his symptoms. Steroids, which I have on hand, and Motrin. The steroids are my son's for asthma. He has two different kinds. In my despair about his Pediatrician's refusal to provide antibiotics, it suddenly dawned on me, last night, that my son still had refills on two steroid asthma medications. He'd stopped taking the medication at the beginning of summer, because his asthma (cough-variant asthma) disappears in the summer. I just got the prescriptions filled this morning, and I'll start him on them this evening (so we can make certain he's taking it at the same time, every day). I don't know if it'll be strong enough, but it's worth a try. I'm also going to start him on 200mg of Motrin, beginning this evening as well. 4) I contacted a local neurologist and made an appointment. Because someone already suggested that I steer clear of the Beaumont immunologists (my son has Beaumont doctors, and we live closest to Beaumont... just my luck!), I didn't want to just wait and do nothing, as his pediatrician seems to think is appropriate. <-- Probably not a very nice, or charitable comment, but my frustration is bubbling over. The appointment with the neurologist is on Wednesday. I'm more than a little hopeful, because they bent over backwards to get him in sooner when I described his symptoms and sudden onset. Maybe they'll recognize what's going on, and DO something. I'm going to take every article that you've all suggested with me. And, I hope to have consulted with one of the PANDAS doctors by then, AND he'll have had his first counseling session. If all of that is not enough to DO something here, locally, and QUICKLY (and by "quickly" I mean treatment started on Wednesday), then I have a back-up plan. I'll take him to the University of Michigan Medical Center, through the ER (if need be), medical records & suggestions/directions from PANDAS doctgors in hand. One of the articles that I read last night was written by a U of M researcher in 2010. 5) One other reason (aside from the need to administer the steroid by nebulizer at the same time, daily) that I'm waiting for this evening to start the steroids and Motrin is that my son's tics suddenly disappeared. As of yesterday evening, all of the tics are gone. Some of his obsessions & the associated compulsions are gone too. The worst OCD symptoms are, unfortunately, still present (he still terrified that normal actions are murdering/harming people, and then there's the "lumps", contamination, separation anxiety, etc..). I want to be able to accurately document where he is when I start giving him medication. This, so I can accurately document the results. I don't know what the disappearing of the tics means, if anything. I do know that I've noted other "symptoms" that, while I'd noticed prior to his sudden onset of OCD, I thought odd, but didn't associate with any medical event. For example, the day before his explosion of OCD, I noted that his handwriting had changed significantly for the worse. It was so bad that I had him rewrite a homework assignment several times (never getting any better), and then finally commented that he was going to get marked down for "bad penmanship". He kept telling me that he "did his best"-- he's an "A" student (with little effort). I just chalked it up as a fit of laziness, and moved on. Everything that he's written since is in these very long and heavy strokes of really bad (and really different from what's normal) handwriting. Fortunately, I can take the assignment, and the previous days assignments as evidence of this deterioration. It's profoundly different. I've realized, just yesterday, that he can't do simple multiplication tables without great difficulty. Yes, he's only nine, but his math skills are advanced. This isn't Mommy bragging, this is fact. He's been doing multiplication since the first grade. He does algebra & geometry NOW. Suddenly, he's struggling with multiplication. He wasn't a few days ago. Discovering this was quite a shock, and I recalled, in one or more of the articles, that kids sometime, temporarily, lost math skills. There are two medical things of note as well. The first is that he had some strange rash on his face and in his ears, after the resolution of his cold, and before the onset of the OCD. When I'd looked it up on the internet (WebMD), I presumed it was eczema, possibly as a result of having had a cold. It went across the bridge of his nose, and on both cheeks, then curled around to the insides of his ears. There's still some evidence of it in his ears. The other thing is that, as of this morning, I can see the beginnings of "Beau's lines" on all of his toe nails. I recalled asking, after he had Kawasaki's Disease, what was wrong with his nails (toenails & finger nails), and it was explained to me that during serious infections, the growth is interrupted, and is evidenced by beau's lines. They're very deep grooves (almost giving the appearance of a gap in the nail) that run horizontally, end-to-end, across the nail. Clearly it's something recent, because the grooves are still very near the cuticle. So, there's something-- physical evidence that should be indicative to ANY doctor that there at least WAS some infectious process going on, very recently.

I talked to my son's pediatrician this morning, and he won't start him on antibiotics, because his strep tests were negative... He did say that he'd talk to an infectious diseases doctor and ask if there's anything else to consider. Even IF he's right that it can't be PANDAS, because he hasn't shown any signs of having strep, I'd rather be safe than sorry. If there's even a chance that it could help my son, I'd prefer to take it, even if it turns out to be fruitless. He knows that I already had an appointment with a counselor for next week, and I get the impression that he thinks this is the only avenue of help for my son. I'm so frustrated. But, I'm going to forge ahead, and seek a 2nd opinion with a doctor who is more familiar with PANDAS, or other autoimmune disorders. Something has triggered this 'episode' (for lack of a better term), and I don't want him suffering at all, least of all due to lack of knowledge. Given the nature of my son's obsessions, I have a hard time believing that counseling, alone, is going to alleviate his symptoms. I checked the list of recommended physicians, but I didn't see any listed for Michigan (unless I missed it-- I'll double check). I guess I'll try to start with neurologists?

Thank you all so much for replying, and (unfortunately) understanding. More so than anything that I've read over the last two days, it helps to understand how this has affected others, and what I might expect, and that YES, he can get better! I'm going to call his pediatrician as soon as they open. If he'll at least start him on a strong antibiotic I can at least reassure my son that we've got an idea, and a plan. One thing that I didn't mention in my first post that my son had Kawasaki's disease when he was five. So, there is some precedent for strep causing an autoimmune response in him. I don't know if that matters, or if anyone else has experienced similar, but I'm going to remind the pediatrician of that too. Btw-- we're in Michigan. Thank you all, again!

Hi! I just found this forum, after reading, and reeling from all of the changes, and information that I've had to absorb over the last 4 days. A few days ago my son was perfectly normal in every way. And, by "normal", I mean by any 9 year old boys standards. OCD was something that I shook my head at while some unfortunate drama was playing itself out on the TV. It was someone else's plight or misfortune, or whatever I thought about it until Tuesday. If things got too uncomfortable, I only had to turn the tv off, and life as I knew it was restored. It started out as a regular day. My son went to school. I went to work. We came home. We went to soccer practice. He used his iPad to make funny videos of his friends. He hoodwinked me into agreeing to a sleepover with two of his best buddies a couple of weekends down the road. He did homework while I made dinner. We ate. I put in a load of laundry while I sent him upstairs to take a shower, before we retired to our nightly bedtime reading routine. I cleaned up the kitchen, grabbed a laundry basket, and walked into my sons room where I expected to find him eagerly waiting to delve into the next chapter of our book of the week. We take turns reading, and he likes that I "do the voices." I was not prepared for what happened next. I walked into my son's room. He was standing in the middle of the room, wrenching his hands and crying. My most stoic & laid back boy in the world hardly ever cries about anything (even as a baby), so tears are a big deal. I quickly presumed some sort of dire injury... but he didn't look injured. I grabbed him into a hug, rubbed his back, and pleaded with him to tell me what was wrong. His response? "I'm so sorry! I'm so sorry! Please don't hate me. I don't want to go to jail!" HATE him? My own son? JAIL?!? Seriously, how much trouble can even the craftiest of 9 year olds get into while taking a shower...? After 15 to 20 minutes of trying to calm him, without success, I sat him down on his bed, and stooped in front of him. It was as if I couldn't get him to look at me, because his eyes kept darting to the four corners of his bedroom. That immediately got my attention. I called his name sharply (wondering if he were cognizant of what he was doing). He sniffed out a "yes?" while continuing to glance at each corner, in the same order, almost on a cadence. I immediately went into my Mommy platitudes, telling him that nothing was too bad to tell me, etc... He stopped looking into the corners, and looked me in the eye, and said, "I'm sorry I tried to murder you." Uh... Huh? Did he just say "murder"? Did he just say "murder me?" Before I could decide whether or not to laugh (surely this was some sort of joke, inappropriate & out of character as it would have been), or set up an appointment to have my hearing checked, he poured out this story (crying hysterically) about how he could have caused me to break my neck, which would have caused my untimely death. He did this by telling me to "look" (earlier in the day), whereas I turned my head. My neck could have broken. Hence, he would have been a murderer. But, his murderous tendencies didn't stop with offing me (by heinous head turning), he had come to believe that he'd attempted to commit suicide in the shower. As my heart started to pound, he poured out the details of his shower... he was showering. He looked down and noticed that his foot was on the drain. What if the water had filled the whole bathroom, and "some crooks" had nailed all the windows shut. He would have died. Therefore, he must have been trying to commit suicide. AND, he recalled touching the hood of one of his classmate's hoodies at recess. He must have been trying to kill them, because touching the hoodie might have caused the hood to somehow become entangled on his hand, and his classmate would have been strangled. AND, he thought he might have dropped a paper in school-- on the floor. He was certain that the custodian would have slipped on it by that time, and have died from a broken neck. A-N-D, he recalled spitting in the grass near a picnic table at the soccer field. Both of the his teammates parents who were sitting at that table were surely dead, having slipped in his spit, and broken their necks. And, there was a "black dot" or a speck that he could see, that he brushed off of his hand, and lost on the floor, and that I was probably going to slip on, and break my neck. Which would surely finish me this time. Sooo... I felt his head, and told him that I'd be right back. I was going for the thermometer, even as he felt cool. He grabbed my arm, and begged me not to move. He didn't want me to slip, fall, and die (resulting in his life imprisonment) from a broken neck. I tried everything, and then finally, "let's go together," seemed to work. But, I had to go through his bedroom door first while he again checked the four corners, shut the door, opened it, checked the four corners, shut the door, opened it... "WHAT ARE YOU DOING?!?" He was checking for bombs and grenades. He very astutely told me that he *knew* there were no bombs and grenades in the corners, but that he had to check. What? Why? He told me that if he didn't check, that it felt like he was being squeezed, and that checking made the squeezing "less tight". I don't drink, so there's no alcohol in my home. I don't, nor have I ever even so much as tried any drugs, so they certainly aren't in my home. I don't even keep any harsh, or dangerous chemicals on hand. My son has never... N-E-V-E-R behaved in any way even remotely similar to this. My mind was racing... I was thinking that someone gave him something, maybe put it in his water bottle. Or, is he having some sort of psychotic break? There was no fever. I left a message for the pediatrician on-call. I sat down with him (while his eyes darted to the four corners, and he started this bizarre pressing thing with his hands to his thighs. I started to explain that he hadn't attempted to murder anyone (he wouldn't hear of it, and insisted that he had). I asked when he started to feel this way, and he thought he'd been feeling this way for a couple of days... or feeling scared for no reason. He'd convince himself that he hadn't tried to "murder" anyone, and the anxiety & fear that he'd been feeling would lessen. Then, it would come back again. Finally, it just bubbled over (hence the scene in his room). Nothing I said would placate him. He understood that his actions were normal and not murderous, but he was convinced that because of the *thoughts* that it had to be murder. And, while explaining this, he was constantly jumping, and jerking, and begging me not to turn my head so quickly, or so far, or "like that", etc... So I wouldn't break my neck. I started thinking that it was time to take a trip to the ER. Something had CLEARLY gone terribly wrong. And, I needed a plan to calm my son so I could get off the sofa where he was attempting to hold me in place so I wouldn't break my neck, or slip on some string that he suddenly recalled pulling off of his new shirt and flicking aside. The pediatrician called, suggested that perhaps he'd had a nightmare (No sir, this was a living nightmare, but we were all awake), or that he'd possibly seen something violent on TV and was anxious, or that perhaps he was ill. Yeah, I went with door number three, because I couldn't believe that anything that I just described (with DS hanging onto my arm, and staring some harsh throat clearing sound every three seconds, eyes darting to the corners, alternating between tears and vigilance, and starting the strange pressing motion on my back (apparently, he was suddenly afraid that "lumps" were going to pop up on me, and he was trying to press them down) would be anything other than *ILL*! I mean, did he hear what I just described?!? 'Call back in the morning, speak to his regular pediatrician. Perhaps he might need some counseling if he's like this often.' OFTEN?!? He'd been like that for less than an hour, out of his whole nine years! In the time that it took to shower, my otherwise normal nine year old was transformed into someone else. Call back in the morning?!? I called the ER, spoke to a nurse, and she said it sounded like OCD. She suggested, since he didn't appear otherwise ill (no fever, no 'other' symptoms, that waiting for morning would be better, unless he seemed dangerous, violent, or suicidal. So, he slept, eventually, and I kept vigil. He seemed okay (asleep), and I foolishly hoped that this 'episode' would be over in the morning. No such luck. He woke up on Tuesday as obsessed as went to bed on Monday night. Through out the day he developed what seemed to be an impossible number of obsessions, compulsions, and even picked up several more tics. He feared that "beer" was being splashed in his mouth from long distances away (carried by the wind). He thought that a fingernail that he'd chipped off (days prior) was in his throat. He feared that his breakfast was contaminated. He was afraid that an orange spot (that only he could see) was on everything... and that it couldn't be wiped off (it'd just wipe onto the next surface). And, he recalled ever more instances of homicide-by-nothing attempts that he'd made and was going to be jailed for, with no hope of parole. He was doing the harsh grunting/throat clearing noise, and pressing to prevent "lumps". And, by morning, it was the case that IF the "lumps" appeared, that somehow a madman was going to spring out of... somewhere, with an axe, and split me in half. "Lumps". An axe murderer. Time to head to the doctor. Getting out of the house was quite an affair. What, with checking for bombs, and him holding my hand and looking out for the tools of murder (lint, crumbs, imaginary specks, strings, etc...) that he surely must have planted to exact my demise by slip-fall-broken-neck-acide. After a brief examination, it was decided that it appeared he had OCD and needed to see a psychiatrist. I got the list of approved psychiatrists from my insurance company, and started calling. Everyone recommended that he see a psychologist instead. So, I called back to get the list of approved psychologists, and they said I needed a "psychiatrist". OMG!!!!! I called back to the pediatrician... he had a thought. He asked if DS had been ill recently. Yes, he (along with a large portion of his classmates) had been ill during the 2nd week of school. He missed a couple of days with a fever, a sore throat, cough, stuffy nose... Seemed like a bad cold that passed quickly. He said I should bring him back in to check for strep. He returned to the doctor's office today-- the rapid test was negative, so they did blood cultures. The Pediatrician explained that there was a controversial condition called "PANDAS" that is perhaps causing his sudden symptoms. That's how I stumbled upon this community. My son was sick, with a "cold" about 10 days ago. Now, out of the blue, he has severe OCD. I'm not yet able to wrap my mind around this. But, while I wait to find out if he's recently had strep/has elevated strep antibody titer (or whatever he called it), I'm trying to understand, and to find some shred of hope, that our "normal" will somehow be restored.