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irishmom

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  1. Hi all, Our daughter finished a 2-wwek course of Augmentin earlier this month -- her first treatment for possible PANDAs after a bad virus in November led to severe issues (rage, ocd, tics, night terrors, extreme transition issues, etc). We've seen fantastic improvements since then. However, her biggest daily challenge now is transitions (i.e. putting on shoes/coat, going into school, leaving the classroom to go home, hopping into/out of cars -- she has been darting/running away, hitting/biting/needing to be carried when it's time to leave). Some of these issues were midly present before the virus, but we're trying to evaluate if this is all Sensory Processing Disorder or another PANDAs flare -- or combo of both. She starts weekly occupational therapy this week, fyi. I'm wondering if anyone has been in the same position or has insights on trying to differentiate symptoms of SPD and PANDAS? Thank you in advance -- Kelly
  2. irishmom

    Communication with Dr. K?

    Thank you so much, abdualpt. I'm so glad to hear that your son is improving -- what a relief! My issue isn't that he's eccentric or wrong (we've seen big improvements in just the 2 weeks our daughter was on Augmentin!). It's that there's been zero communication from him, after he promised us a detailed email for our daughter's protocol on Dec. 22. His staff is so nice, but just keeps saying to email him again and again. I'm now at 7 emails in 3 weeks without a single word on from Dr. K -- not a simple acknowledgement of the emails or the protocol guidance he said he would put in writing to us the weekend after that Dec. 22 call. With the first phone consult at $650, we're still not seeing what he promised and what we need for our daughter. She is in no way out of the woods. I really don't want to try to find another doctor, but I'm not sure what my choices are at this point. She needs care and follow up. Feeling frustrated that he doesn't seem to care and we thought we established him as our daughter's doctor. We even, on that initial call, said we'd bring our daughter to Illinois to see him and he said that wasn't necessary. Any help out there? Thanks -- Kelly
  3. Hi all, we had our first phone consultation with Dr. K on Dec. 22. Our daughter was on a 2-week duration of augmentin. while we’ve seen big improvements, we are still awaiting the detailed email Dr. K promised us the weekend following our Dec. 22 call. I’ve emailed him 5-6 times since then and have spoken to his office several times. They are apologetic and promise to speak with him. I’m at a loss here as he seems totally to be ignoring us. We’ve faxed blood work to his office too. Not a word from him. I did go ahead and set up another call with him with his office but feel really uncomfortable sending more $ to him when we a. haven’t heard a single word from him and b. are still awaiting his detailed notes from our initial conversation. I know he is a renowned doctor, but it seems he either can’t or won’t communicate. Any advice? I feel like we just got to him and now are considering needing to find another dr. thanl you — Kelly
  4. Hi all, My four and a half year old daughter finished a two week prescription Augmentin on Friday night. The improvements we saw in her during that 2 weeks were incredible -- sleeping in own bed 11-12 hours a night (vs. night terrors, or waking up multiple times each night, needing us to sleep in with her, etc), nonexistent rage (vs. daily rage, started after a virus in November), big reduction in OCD behaviors. We saw many wonderful moments of having our "daughter back." Question is, how long is typical to be on antibiotics? The last 2 nights our daughter has woken up a few times overnight. Thankfully no night terrors or screaming. But, as she just completed the antibiotic we are watching her closely for any recurrence of past issues. Is it typical for a kid her age to go on longer than 2 weeks? If she were to have another flare soon, would we expect her dr. to re-up the Augmentin or try a different approach? Thank you in advance.
  5. Hi all, My four year old daughter just started a 2-week course of Augmentin for suspected PANDAs this past Saturday. She is officially 1/4 of the way through her 2 weeks on the antibiotic. She has slept for 3 nights in a row and has stopped blinking - both of those are huge developments. But her impulse control and not listening (husband had to carry her to the car barefoot without her coat on in 8 degree weather today after a 45 min. episode leaving the neurologist) are still very very poor and affect the whole family. Dr thinks we *should* see a "significant" improvement in symptoms within 2 weeks -- so my question is, at what day on antibiotics did things start really turning around for you (if put on a 2-week course like my daughter)? Thank you so much -- Kelly
  6. Hi all, We have our first phone consult coming up with Dr. K. Can anyone let me know what to expect from that call? How best should I prepare. We have an hour tops and I want us to be prepared as possible. Thanks in advance -- Kelly
  7. irishmom

    Sound like PANs or PANDAs?

    Thank you so much for your responses. We have our phone consult coming up with Dr. K. Does anyone have advice on how to prepare for this? Anything I should expect? Thank you!
  8. Hi everyone, My four and a half year old had a very bad virus about 5 weeks ago. Started with frequent vomiting, lethargy for 5 days, followed by diarrhea for a few days. She was in the ER to get IV fluids and IV Zofran. In the last few weeks, what started out as odd behavior/tics with tiny episodes of aggression have very quickly turned into severe fits of rage and other serious symptoms. Below is a sampling. As I wait for a return call from a PANs/PANDAs dr, thought I would ask this group your thoughts. Thank you in advance for any of your insights. Peculiar behavior Needing to get into the car on the same side Licking the walls Focus on shapes (drawn xmas tree has to be perfect triangle, could only step on the large square black tiles in airport) Had several days of eating enormous amounts of food after virus; eating appears normal again Needed to put large amounts of honey all over toast, covering the entirety of the edges and bread Complained of itches all over her body; was trying to scratch everywhere, but there didn’t appear to be anything on her. She couldn’t pinpoint where it was, but she was crying and scratching hysterically. Wouldn’t go into school because there were “too many cars” in the parking lot Overall irritability/frustration has increased Frustrated with self/others over very small things that she used to be able to handle without a problem Easily set off, then it lasts a long time to recover Quicker to yell at/push brother, less patient (if he takes a toy, for example) Transitions from one activity to another or leaving the house and hopping in car have been ongoing difficult, but are even more so now Needs to be carried more frequently, even when not especially tired Had to be carried out of school several times after not wanting to leave Has missed some school due to all of these issues, even after back to physically “healthy” after virus Personality Fewer moments of “lightness”/joy Not smiling as much during the course of a day After long sustained episode, can “switch” back to sweet/loving/calm/happy Seems to struggle especially with lots of stimulation (sounds/music/movement) Episodes scare her 19-month old brother; when we tell her, that doesn’t calm her down Sometimes says husband, brother, or I bother or hurt her when we aren’t near her More clingy than usual with husband and I Not as nice/empathetic Takes a longer time to apologize, apologies don’t seem as sincere Unpredictable as to what might upset her at a given point Doesn’t talk and use her words as much as she did before virus; nods her head more to answer a question and seems to talk like a baby from time to time This doesn’t seem like the same girl of 5 weeks ago Her “normal” personality is: fun loving, funny, sweet, great big sister, interested in various activities, loves school, happy, content. Need to constantly repeat requests/asks of her, this was an issue before virus but even more so prevalent now. 10-20 times. Sleep issues Frequent night terrors since the virus (10-12+ – takes 1 hour+ to calm her down) Thrashing, screaming, fear, not identifying husband or me initially Regularly wakes up throughout the night, even if no night terror Sometimes calls out “no!” during sleep Harder to put to sleep, wants husband or I to sleep through night with her Overall much less nightly sleep than before the virus Generally seems exhausted Have tried: earlier bedtimes, reading more books, spending more quality 1:1 time at night with her, lavender scents in room for relaxation, gently body massage after baths, setting calm atmosphere before bedtime Tics Eye blinking (present before virus; but ongoing) Throat clearing (present before virus; but ongoing) Excessive sniffling (seems new; but ongoing) Aggression/physical lashing out (all new to our daughter) Biting husband and I (I have a large bruise from a hard bite through sweater) Biting her own hands, clothing Biting furniture Hitting/kicking husband and I, walls Banging headboard of bed, on floors, on walls Head butting us Thrashing body on carpet Sustained screaming at top of lungs (upwards of 40 min) – she looks afraid Pupils seems to be enlarged during fits, but it is hard to tell with her dark eye color Throwing shoes, pillows off couch, overturning cushions Ripping tape off of boxes Slamming doors Quickly running/darting into mudroom while screaming Doesn’t seem to comprehend when there’s been a big aggressive event Our primary concern is keeping her physically safe during fits of rage, but coming closer to her seems to enrage her more
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