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airial95

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Everything posted by airial95

  1. A couple of thoughts - first off - my son has NEVER had an elevated strep titer - even in bloodwork taken on the SAME DAY as positive throat cultures with other clinical presentation of strep. So I agree with others that the lack of titers is not indicative of anyting. Strep has always been our only trigger as well - although again, I agree with others, that it can morph to include other various other things. Now - that being said, if strep has typically been your main culprit, as your ped considered strep hanging out in the nasal cavities? It's tough to culture, but on more than one occasion it was the culprit in a flare of my son's. We used a topical abx (muciroprin, altabax, etc...) swabbed lightly in the nasal cavity a couple of times a day for a couple of weeks - in addition to his oral abx. The application of nasal abx has become a standard protocol for us for at least the first 7-10 days after another confirmed strep infection - just in case.
  2. I found that even after all of the other symptoms subsided, some of our OCD lingered - for lack of a better way of putting it - it was almost a "habit" - just the way they always do things. It was at that point that we introduced CBT/ERP - and in our case it has helped immensely. When we are out of a flare, it gives us all the tools to help break those residual "habits". If you haven't already tried it - if she seems to be better on all other fronts - it might be worth a try.
  3. Just to clarify my comment - I wasn't implying that anyone here was doctor shopping because they wouldn't accept a mental illness dx, the point I was trying to make is that is the conclusion many folks who have never dealt with PANDAS, or any other critical illness for that matter, tends to jump to when we talk about how hard it was to get proper treatment.
  4. Before I comment - let me say that I agree with everything said so far - not to mention that when we were all pregnant most of us probably went and interviewed multiple pediatricians to find one that was right for your family - doctor "shopping" is good practice because the wrong doctor for your condition, or even personality can be detrimental to your health. Unfortunately, like someone said, the term got a negative connection with people who abuse controlled substances so here we are. I agree that we all need to find the right medical team that works best for our family, and if you have to go through a few duds to find the right ones - so be it. With that being said, I want to share a point that my husband brought up to me based on the whole BCH situation. My husband is not the PANDAS activist in the family - that falls squarely on my shoulders. But he has gotten involved in some of the BCH stuff, posting it to his timeline and following our comments on the BCH page - and he made the comment to me that while most posts were well written, he was bothered by how often it was mentioned that people had to see "doctor after doctor after doctor" before someone would agree it was PANDAS. He even noted that it made us sound (as a community) a bit like a bunch of crazy "doctor shoppers" - and this was long before Beth's email. Mind you - this comment came from someone who is on the front lines of this battle too and understands the challenges with not only getting diagnosed, but treatment as well. I think it goes back to the stigma of mental illenss - and I would think folks in the autism community may face some of the same criticism. Outsiders automatically want to assume the reason we've had to search for a doctor is because we didn't want to face the "uncomfortable truth" that our kids are really mentally ill (or autistic). Yet - replace the term "OCD" with "cancer", or replace "Tourettes/tics" with "abdominal bleeding" and folks would think you were a terrible parent if you weren't getting a 2nd or 3rd opinion until the cause/appropriate treatment plan was found. It's a tough situation to be in - we're on the forefront, and in 100 years from now folks are going to be amazed that there was a point in time where infection/autoimmune issues WEREN'T automatically considered in the mental health field. But we're a long way off from that (think about how many folks still think ulcers are stress related?) Now - don't get me wrong - I'm not saying that we should stop shouting from the rooftops how hard it is to get help for our kids - but if someone from our own ranks could see the "doctor shopping" thing appearing as a common thread - maybe we need to find another way to phrase our message? Please don't think this post is meant as a criticism aimed at anyone - it's just another point of view on how we discuss the issue, not the underlying problem that there's not enough folks out there available to treat our kids.
  5. My son has never had an elevated titer - and we've had SCORES of postive strep tests. I believe it's something like 27% of the population will never have a rise in strep titers even with existence of an active infection. (Don't quote me on that number - but that's what I think I remember Dr. M telling me, and I think it's posted in the helpful threads up top.) If you are unsure as to when the symptoms started related to infection, I would start keeping a log. We used a number scale to try to be objective - 0-9: 0 being that symptom wasn't present - 9 being that symptoms made our son non-functional. It helped us see a few things - first of all the obvious relationship to strep for our son - even just an exposure set him off. It also helped us monitor improvement when we were first starting treatment. We had very cooperative teachers when we started the journey - unfortunately, his special ed pre-k teacher never quite got the hang of what we needed out of the logs so we stopped tracking - but he's THRIVED for almost 3 years in her class and will be ready for mainstream K next year - so we considered it an okay trade off. Another thing you might try is to give your daughter some ibuprofen when the symptoms get bad, this has helped a lot of kids find some temporary relief of symptoms. Good luck!
  6. This is interesting to me. It has been suspected now that I had PANDAS as a kid, Dr. B said that based on our family history for my son, it's likely. (strep 6-8 times per year, very hard to clear, was hospitalized in 6th grade for strep, had lots of anxieties and quirky behaviors, and now have been clincally dx with OCD - leftover from my untreated PANDAS maybe??) Anyway - in college, I had a similar, although not quite as severe episode. I lost almost a week to blackouts. My roommates and boyfriend reported all sorts of strange/odd behavior at the time, but nothing to give them to much alarm until the 3rd day, when it became clear that I was "missing time" - repeating myself, for example: arguing with a friend because we really needed to get to studying - minutes after he had just left a 3 hour study session at my apt...etc. My roommates couldn't wake me the next morning, and called my advisor (small college - we were like a family), he called my folks and advised them to let me sleep. I was taken by ambulance to the hospital later that afternoon after showing up in my calculus class in my nightgown with no shoes (this was late February in the Allegheny Mountains of PA) and then lost conciousness. The first thing I remember at all is waking up at the hospital being physically restrained by the staff as they were trying to re-insert my IV - that I had yanked out. I had NO clue what was happening. I was 18 years old at the time, away from home, and my folks had moved to FL. I was in the hospital for about a week, and eventually checked myself out AMA - after they ran loads of tests they couldn't find anything wrong with me (although the first 2-3 days I was there I was still blacking out and still have no memory of any of that). At that point I just wanted my mommy and wanted to go home and all the issues seemed to have resolve themselves. Until I read this thread, I never thought about that being related to my possible PANDAS. Thinking back, I did have strep already that semester - about 2-3 weeks before this incident, and I was given an antibiotic at the hospital (I can't remember what for exactly - memory loss and all...) My family doctor chalked it up to stress - because I had always been "high-strung" and an over achiever (sound like any of our kids???) Now I'm totally going to have to get this book and read it... That's what I love about this place - always discovering new angles I hadn't thought of before!
  7. Maybe consider staying in a hotel next time? Instead of making it sound like the house was too messy - put it in terms of the animals - he seems to have a mild allergy to animals that otherwise wouldn't be a big deal, but causes his sypmtoms to act up - so you'll be staying at a hotel. you can clorox bomb the hotel when you get there And maybe that will help - it may also give him a place to relax and rest when needed, I know my son flares when he's overtired - and an AppleFest/family reunion sounds like it might wear him out.
  8. I think there was a facebook error - I got a facebook post asking me to re-like it b/c they needed at least 25 likes to regain their seperate URL. Should be working again now.
  9. Remember - it's OCD Awareness Week - what better time to bring PANDAS/PANS to the forefront and keep the pressure on!!!
  10. I know many of us have been wrapped up in what is happening up at BCH - however, this week is OCD Awareness Week, and another good time to try to get the word out to local outlets on PANS/PANDAS awareness. I have sent another volley of emails off to all of my local news outlets - not the first time I've done so, but maybe with the push of OCD Awareness Week behind it I might get some traction this time. Just a thought!!
  11. Azith does work for strep, it's what they put my daughter on as she is allergic to penicillin. As for flare coming off of a flare - yes, it has happened to us. It was always either another strep infection (happened multiple times to my son while on azith), or exposure to someone else who had strep (more common reason for us). Has the whole family been tested?
  12. So - as if the whole BCH thing doesn't have all of us worked up and stressed out enough (worked on my letters this morning!!) I had my daughter's 504 meeting yesterday (thanks LLM for the sample doctor letter!!!), and it couldn't have gone better!!! High points: - Her K teacher from last year came and was so clear and to the point as to what the issues were and what was needed there was no doubt in anyone's mind. - Her principal suggested ADDITIONAL accomodations to the team beyond what we were asking for to cover the possibility of extended absence (not a high concern at this point for us - she's one of the few that recovers completely with a 30 day course of abx - knocking feverishly on wood right now!) as well as stronger accomodations for high stakes testing (curse you FCAT!!) - The DISTRICT rep complimented me on how prepared I was and the clear information I provided on PANDAS - they had all heard of it, but he was of the understanding that it simply made existing OCD worse, but from what we told him and what he was hearing from her K teacher - he learned something new. Not to mention we were so prepared that he didn't feel the need to prolong the process with any additional assessments/testing and was going to support ALL of the accomodations we discussed - The school nurse asked me to speak to their annual post-planning conference for the district to present and overview on PANDAS. She said 2 years ago she had 1 student with it at another school she subbed in at (incedntally - that was my son), 3 cases last year in her Charter district (we were her first last year), and this year - it was up to 5. While the steadily increasing numbers are disturbing - it's encouraging to have staff that's learning! Cons: NONE!!! I was thrilled walking out of there. Then last night happened. Around midnight, my daughter came into my room scared, she had a nightmare about bugs. When she closed her eyes she "dreamed about bugs, and when I open them my brain is telling me I see bugs all over my floor, I know they're not there, but my brain says I can see them" (This coming from my daughter who likes to catch any and all bugs she sees - but when she flares she aways has a bug fear.) Was she describing a hallucination - who can tell. I let her climb into bed with me, telling her there were no bugs, and if there were, the dogs would be sure to eat them for us. She stayed awake until 6:15 this morning! She kept asking reassurance questions about the bugs, after about an hour or so of that, she rapidly switched gears to asking about the "red light in the corner of the living room (motion sensor from our security system) and why is it "always watching" her. At this point - she was downright terrified, and quite frankly, I was freaked out too. She was freaking out saying she can't go back into the living room with the light watching her. I tested her and told her around 4 AM to go play quietly if she wanted, she wouldn't leave my bed, then I upped the ante - and said she could go out and watch TV (not something we let them do when they wake in the middle of the night), she wanted to go, got about 2 steps from door to the living room and freaked out and ran back into my bed. This morning, she fell asleep for about 45 minutes, and when she woke up, I tried to get her to go into the living room, she made it in there, for all of 12 seconds, before she ran back crying. I got her back to sleep in my bed, and she slept until around 10:30 (I obviously kept her home from school), at which point she pops her head out of my room and says "What about breakfast?" as if nothing happened last night - came into the living room and all. Thankfully we had therapy at the Rothman Center this afternoon, and it gave us something new to talk about - she's never been like this. By the time we were finishing our sessions, she was acting out and getting really hot-tempered (not typical for her), even throwing a toy at me. As we were leaving, I noticed that her cheeks were getting very flush (one of her signs of potential strep). The only other wierd thing was how hungry she was all day - she had breakfast (2 waffles) at 10:30, we stopped for lunch at 12:30 on the way to Rothman (bowl of mac & cheese), ate a whole package of cashews in the car on the way to Rothman, had a back of cheese crackers in the waiting room at rothman, and then complained the WHOLE time we were there/way home that she was hungry. She then proceeded to eat her body weight in chicken tonight at dinner (5 helpings - ate nothing else, but 5 helpings of chicken!). Before bed, she was asking for a snack again..don't know what that was all about. I upped her abx, she was put on a proph dose last week by the ped b/c of rampant strep in her school (3 weeks stratight with double digit cases the nurse said yesterday). I'm hoping this is just a reaction to exposure, but the red cheeks give me pause. I've missed so much work this week with a vomitting PANDAS son on Monday (anxiety), 504 meeting yesterday, then therapy and this today. Don't know if I can swing another day out of the office... I'm a fan of roller coasters, but after over 2 years - I'm ready to get off this one now!!! We got home, and her mood improved, even hung out in the living room for a bit. She's in her bed now reading,
  13. My son was 2 at dx, so for him, it's just something he's always lived with. We explained it very matter of factly - when some people get sick they get a tummy ache, or a stuffy nose, his brain gets sick, and it makes him act in ways he doesn't want to. We kept the focus on that's why we see the doctors so much, and that's just the way God made him - it's nothing bad or to be ashamed of - just like some kids wear glasses, or have allergies and can't eat certain things, or have diabetes and need to take shots (like his little friend from school), God made us all different and he gave us the Doctors to help us get better. That explination worked for his 3 1/2 year old sister too who decided she didn't much like having a little brother any more (subsequently she was dx at 5). They continue to ask more detailed questions, how it works, what each medicine does, and we explain them as age appropriately as we can. We made up a story about our immune system being the "army" to protect us, and our brain, the BBB being the fort to protect the brain, and the army gets confused beacuse the bad guys (strep) seometimes wear the same army uniforms as the fort guards, so the army attacks them by mistake. It's extremely simplistic (and probably not 100% medically accurate!) but it helped them both visualize and understand. My husband's cousin is a published children's book illustrator, and he's helping us put it together into a publishable book - when I can ever get a chance to work on it some more!!!
  14. Anyone use Twitter? Starting a twitter trend with the hastag #BCHreturnelizabeth might get some traction. If enough people start posting to it, new outlets tend to pick up on things that start trending... That said - I have NO idea how to use twitter - I'm just trying to pretend I'm not pushing 40
  15. Create a detailed log between now and your appointment with the neurologist. We used a numerical scoring criteria of symptoms to create a "daily score" (I can email you my spreadsheets if you're interested - PM me). Along with that, we noted any correlations to strep or other infections (sister had a fever, 3 cases of strep at day care, etc...) Our neurologist was initially "on the fence" - believed it existed, but that no other treatment than the standard treatments for OCD/tourettes should be used, and if there were no elevated strep titers - there could be no PANDAS (my son has never had an elevated titre - even with positive cultures!). He took one look at our detailed logs and told us flat out that even though the bloodwork didn't fit - we were ABSOLUTELY dealing with PANDAS, and based on our logs, he couldn't deny that the abx treatment had a significant effect. It helped us immensely early in our journey when we were trying to find local doctors to help.
  16. Frequent urination is a PANDAS symptom, so don't ignore it!!! My 4 yo son ONLY wets the bed when he's positive for strep. If he has an accident - we run to the peds office for a swab - and they are almost ALWAYS positive! I have no idea why this is a PANDAS thing - but it's been our biggest tell.
  17. In addition to shaking, I found that the temperature also had an impact. I found that it started to get discolored quicker if I wasn't IMMEDIATELY putting it back into the fridge (ie, pulling it out and not putting it back until I assembled the entire "medicine station" as my son calls it!) It's often not more than a couple of minutes at a time, but we noticed a difference the few times we had to travel with the Augmentin, we used a cooler, with lots of ice pacs (the medical kind used for overnight shipping of medicines - one of the few benefits of my ins. co forcing me to use the mail order pharmacy for my weekly Enbrel!) but found that it got discolored more quickly -prior to 10 days. I've since started drawing the medicine right in the fridge, or with the fridge door open - keeps me form keeping it out too long - and we haven't had early discoloration since. None of this is scientifically proven - just our own experiences!!!
  18. My daughter's school uses a website called spellingcity.com It has lots of spelling and vocabulary activities. The school has a membership so her weekly lists are posted there for her to practice, but individual students can access the various games and activities as well. My daughter is only in 1st grade, and doesn't have too much trouble with spelling - however, she gets very frustrated having to do the different "practice" activities that I have to sign off on every night for her weekly tests. This website gives her a couple of options that she enjoys and minimizes the fight...might help with some of the visual learners too.
  19. We've used lots of other "races" too - before I finish the dishes, before I come back in from taking the dogs out, etc... but having us also have to take medicine I think makes him feel a bit better. Ironically - him showing off his amazing medicine taking abilities to visitors works well too - you'd think having an audience would increase the anxiety!
  20. My daughter is younger (1st grade) but we've also already dealt with many of those issues. We had this happen particularly with reading - she's an excellent reader, far above grade level, but when it came to do the nightly reading assignment (that we had to sign off on - don't trust Kindergarteners/1st graders to do it I guess...) she would get very upset, she doesn't know the words, etc... We have implemented some of the same tricks already mentioned here - but one thing that I discovered this year that helped us was actually leaving her alone to do her work. When she would get anxious - in the past I was always right there to help her work through it, etc... I found that if I wasn't hovering there offering help - she'd still struggle through the anxiety, but could make it through on her own. It was almost as if I made things worse. We have also "gamed" the system on some things...like her reading assignments - based on the advice of her Aunt (a 1st grade teacher) and her K teacher from last year - if it's a choice based assignment (she decides what to read for 20 min/day), don't force it - log what she does read - instructions from a new game, subtitles on the TV with the sound off (we use this trick often when we're on the phone - ironically, we have a lot of work phone calls to catch up on that we can't leave the room for when she refuses to read!!!) The goal of the assignment is to get them reading - yes, it would be great if it would be actual books - but if my 6-yo kid can read the epilepsy warning that comes on at the beginning of her brothers video games - and understand it enough to ask about epilepsy - I think she's okay. Edit: We've also asked for "busy work" - or assignments for repetition vs. concepts be limited or eliminated during flares - this also helps alot - can't remember if anyone else mentioned it!
  21. Have you tried "racing" her? It's something that was suggested by one of our therapists. For our son it tends to work. we get his meds set up, and then we pull out ours (I take daily meds in the evening for my Ankylosing Spondylitis - but we've used vitamins, or other daily supplements if it wasn't time for our usual meds) - and we make it a race. My son always wins. When he's extremely anxious - it may take a little longer...but this has been one of our little tricks that we use.
  22. Thanks for the heads up!!! I have posted articles/updates occasionally, but also try to keep my FB status more up beat and lively (usually complaining about my football teams!! )
  23. I'm sorry that you have to deal with this - it's never fun. What you are describing does sound EXACTLY like PANS to me. I'm not one of the ones known for tracking down the research - maybe they will chime in, but PANDAS Network and PANDAS Resource Network are two groups to try first. There is also a thread pinned at the top of the forums with useful information. That being said - here are some things that I CAN tell you: - A good percentage of kids NEVER have elevated strep titers - I think it's in the 25-35% range (you may be able to find the exact number on the PANDAS Network website). My son is one of these. He has had clinical strep with positive rapids/cultures multiple times but NEVER had his blood work indicte he had strep. Titres ARE NOT an inidcator for/against PANDAS. My son's PANDAS was also caused by a skin infection (impetigo) vs. classic strep throat. - For immediate symptom relief - try giving him ibuprofen. The antiinflammatory effects have been known to help many of our kids when they are at their worst. If it helps - at least you know you're dealing with inflammation - which is also indicative of PANDAS. - Start a daily log/journal of your son's symptoms - including saving handwriting/drawing samples from pre/post strep. This was helpful to us early in our journey, and seeing the strep/behavior relationship plotted on paper helped a couple of naysayers come around that it was more than just a coincidence. I have a spreadsheet that I developed based on others experiences here that I'm happy to share if you want to PM me your email. Hopefully these few tips can get you started until others can chime in!
  24. We havw had success with our 4 yo swallowing pills usibg the oralflo cup ($14 on amazon) its looks like a modified sippy cup, but it has worked for him. He swallows the tic tacs/m&m's but panics when it come to the real deal. The cup has helped. For us - when outsiders are over it makes it easier. We makr a big deal if showing off what a big boy we are, swallowing pills. As for bribery - my son just "earned" a ps vita game system with bonus stars on his chore chart for taking meds...whatever it takes.
  25. LLM - ironically - I was trying to make a joke to keep this thread from spiralling into negativity like the last! But like I said, I understand the request. I also have a child suffering, so I also want to hear what's new and being discussed. That said - Here's my real world, non medical expamle: I'm an traffic engineer, and about 15 years ago - a paper was published evaluating the safety making a right turn followed by a U-turn leaving a shopping center vs. being able to make a direct left turn out of the shopping center. The study "concluded" that the U-turn was safer then the direct left turn. For YEARS this was taken as gospel - and we heard the mantra over and over again how U-turns are safer than left turns...blah blah blah. Considering the university that published this paper was my alma mater, I was not happy about how this was being taken as gospel - especially once you actually READ the study - and discovered that the paramaters were very narraow and concluded that on certain types of roads (6-lanes) where the shopping center exit was more than 2,000 feet from the intersection, and the intersection where you were U-turning had a traffic signal. They didn't even look at any intersections that didn't meet that narrow criteria. Folks just read the abstract of the paper and started singing the tune of "U-turns are safer" when that was only the case in a very specific situation - the University in question published a series of papers over the following years evaluating the same situation but on many different roadway characteristics and driver populations and lo and behold - it wasn't always the case. But it took YEARS to break the "proven fact" that U-turns were safer. The worst part about it was that the agecny that paid for the research (DOT), never actually READ the study before implementing dozens of policies based on the "findings" that U-turns were safer. We had years of bad local design being driven by this research. The research itself was good, it wasn't flawed - it was how it was being misinterpreted by professionals - who should have been able to read the study and know how to apply the findings properly. The issue was - no one read farther than the summaries/abstracts. It wasn't until other professionals (who HAD read ALL of the research) started pushing back in situations where U-turns weren't appropriate (usually by asking if the person had actually READ the paper) that anyone finally paid attention. But here we are, over a dozen years later and I still hear the universal truth that "U-Turns are safer." And all of this was before the world of social media (although - I'm not sure how much of a "trending topic" U-turn safety would be on Twitter ) So I understand the dangers of small snippits of information being thrown out there out of context being potentially dangerous to our cause. Sorry to bore you all with a traffic engineering story...
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