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Everything posted by JAG10

  1. My dd10 can't, CAN'T keep her hands still or most of her body (she often looks like she is doing break dancing moves) but especially her hands. This ties into her worst OCD symptom-picking! In the winter and spring, she picks at her fingers and toes-nails and cuticles; summer and fall she starts with mosquito bites that she can't stop scratching that turn into a wound that she can't stop picking. She's ulcerated several (one ER thought she might need a skin graph on her shin) and has scars all over her legs and arms. If there is anything that has made us close to taking her to a psych hosp
  2. I think it depends on what the prescription is for? Antibiotics don't matter, but I think if it's a "controlled substance" like stimulants, pain meds or steroids, the doc needs to be licensed in the state where the script is filled?
  3. I also wonder about the little ones with the chronic ear infections.... I wonder how many get swabbed for strep? They're sick, unlikely to be cooperative, the ped is going to put them on abx anyway, so don't you think many docs don't bother? I feel so guilty my girls were in daycare!
  4. This is a great poll!!! I think when your child's symptoms begin in pre-school, it is so hard to tell. My d had a rock obsession very young, couldn't pass by a rock without picking it up, rocks in her pockets, rocks in our cars, rocks in the bathtub, ect. So, what did we do? We tried to make it normal. We made a rock garden right outside our door to at least try to keep some of them outside. What would a pedi say? Watch and wait... lots of little kids like rocks... And just like the PANDAS go-to docs describe, things get a little better and the baseline gets moved a nudge more away f
  5. Dawn, WOW!!!!!!!!!!!!!! Did the docs make any comment about the ASO remaining constant for all of you but DNase-b skyrocketing? Does that mean anything specifically?? Dear Worried Dad & All-- We take the cake for a situation like what this thread is about. We have Dr. K saying "*^$%$#^^*, I have NEVER seen anything like this before!!" Dr. T said about the same thing with this recent line-up of strep antibody results. Are you ready?? We had the family all run in Dec. at my INSISTENCE despite negative strep cultures. Hold on to your pants--I think we need a
  6. It is the maximum amount out of our pocket, but I'm assuming that is only for approved and covered procedures. For example, our policy does not cover fertility treatments or plastic surgery, so if we chose those treatments, the insurance would not kick-in after we pass our maximum. I guess what I'm wondering about is that the insurance company cannot contain costs by what they deem to be reasonable reimbursement once you pass your maximum, so the only other option, for them, is to deny the coverage of the procedure altogether as not being standard care of treatment.
  7. Does anyone have experience with a policy that has an "out of pocket" maximum cap for the year? We have a BCBS PPO, Personal CHoice and our "out of pocket" maximum is $2000/yr for an individual and $4K for the family. I guess I'm nervous procedures would be totally denied because if they are approved, then everything over $2000 must be covered, not what they deem "reasonable". Does anyone have any experience with this? Sounds like a good thing except that pesky "pre-certification" part!
  8. LLM, I've seen "canary" reaction posted a few times. Can you please explain what that means exactly? Thanks!
  9. dalle tue labbra alle orecchie di Dio From your lips to God's ears! (in Italian, of course ) I just meant the jetlag between the two is exhausting. We cannot grieve and then accept because that is not the journey intended for our kids. Each of us... we are so brave, committed and tenacious.
  10. So many great ideas! What an amazing group of folks! One of the aspects of PANDAS that is exhausting is. ironically, its hopefulness. I mean, if our children became totally debilitated and we knew that was the way it would always be, we may be devastated, grieve the child we thought they were to become, but eventually grow to accept. Some of you may be familiar with the Welcome to Holland poem. But with PANDAS, you intermittently get to see that child you thought they would become, the static clears and you see them and then lightening comes and brings back the static. So, we remain o
  11. When I was waiting for acceptance letters into graduate school (18 years ago), I drove myself nuts checking the mailbox, internet, and voicemail....checking the phone..was it still working...something must be wrong, I should have heard by now? Waiting for doctor's appointments that are weeks away can be torture. Waiting for test results or doctor's replies can be torture. Waiting to see how your kid is going to respond to treatment is torture. Waiting for anything important has always been very challenging for me, personally. I'll only speak for myself, but this issue is my mini-versio
  12. Momto2pandas, I am a SLP and have always been keenly aware of my dd10's changes in fluency and linguistic output. Before we were recently made aware of the PANDAS connection, we were on the psychiatric med merry-go-round for 4 years. She usually had a positive response to SSRIs that would quickly fade as well as result in behavioral activation. One thing I would always notice on the initial positive side would be her improvement in linguistic fluency, word retrieval and vocabulary usage (which duh, helps socially). Similarly, so went the handwriting, so went dd10. You can look at her
  13. She has not done steroids; just about 3 weeks of 250mg zith and now 12 days biaxin xl. It could be due to her weight; I think the child's dose for biaxin xl for her weight should be 550mg and she's taking 500mg, but when it only comes in 500 mg increments... It should not be so hard, but I consider us very lucky to even be pursuing this road since she is asymptomatic and it was a open-minded psychiatrist to point us in this direction... she couldn't treat her, but that's okay, we are grateful and can find the help she needs.
  14. Hi EAMOM, We were one of the 3 that switched from zith to just biaxin xl with a solidly positive result.... for the first 3-7 days. Since the poll (no more polls for me-kiss of death), next 4 days backslide and we are on day 12. Doc mentioned if backslide continues one more day, may add Aug. to the mix. My dd10 weighs about 80lbs so she's right on the cusp btn the 500mg and 1000mg; can't cut one in half bcs of the extended release. Also, something about the Aug/Biaxin mix might help competing carrier of strep and myco-p. JAG
  15. Our dd10 used ssri's (zoloft, prozac, celexa, st. john's wart) for 4 years. We found that they 1) resulted in behavioral activation (intoxicated, hyperactive, mania-like behavior that some psychs will say is early bipolar, but goes away when the ssri is stopped, so not bipolar) which we used stimulants to try to control 2) didn't work the way they expected them to in that they are supposed to take 4-8 weeks for full effect and with my dd we would see a marked improvement immediately- within a day or two, it would last awhile and then it would eventually (sometimes weeks, sometimes a 1-2 mont
  16. Fixit, My dd is also 10 and has been on the Biaxin XL 7 days, 500mg. She is definitely improving, i'd say 3 steps forward, one step back fashion. She has remarked about feeling pressure in her eyes too and I've noticed her rubbing them. I'm just making an informed estimate at this time, but I think my dd started with strep from recurring ear infections very young, toddlerhood. Looking back, I believe the myco-p may have piled-on winter 07 (long, persistent cough at that time) with a marked downturn in behaviors and function the second week of 3/07. As far as the lyme 41 band, I h
  17. What would be the impact on the incidence in the general population to have two siblings or family members with 2 or 3 of these co-infections?
  18. WOM, As a SLP, I serve on many student's IEP teams and his workload should and can absolutely be adjusted. Perhaps you should consider obtaining an advocate if the school is not accommodating your son. Let them do the lion's share of the fighting with the school district, you need to save your energy fighting for his health. Your District could also send someone out to your home to work with him, if you think that would do more help than harm. Most of my experience is at the elem. level, but I do work 1.5 days at our middle school. If you look within your Procedural Safeguards No
  19. She describes it as getting "stuck" looking at something also, but she has that glazed-over look rather than looking with intent, if that makes sense. She does not do this mid-sentence or action. A verbal prompt does not usually get her to stop right away.
  20. Parents, I was speaking with doc T about this intense staring my dd10 has been doing since she was 5. She's had two EEGs since then to rule out absence seizures (both negative). She stares with that glazed-over look like she's internally preoccupied rather than actually looking at anything. I think it might be OCD related because the staring has subsided in the past with SSRIs (which eventually would ultimately fail and result in behavioral activation). She can sometimes converse during these staring spells that look like daydreaming, but they can last for a few minutes. I realize
  21. Can someone tell me what is PID in box 23?
  22. I was saying that of the 400 students in my elementary school, 4 have a dx of TS. All four of those students happen to be white and male; the school is approximately 1/3 white, 1/3 asian, 1/3 african american boys and girls. Of the 4 boys two of them are related. 4/400 is high; we've had a faculty in-service on TS and this is why we are having a special assembly for the students as well. You have to keep in mind the specific sample I'm referring to is all school-aged children which would make the incidence rise compared to the US population. Jules had quoted 1:100 of school children
  23. Incidence rates vary to a great degree, from 1:100 to 1:1000. For what it's worth, I work in an elementary school of 400 K-4 students and we have 4 dx w/TS. A representative from TS Assoc is coming to speak with our 3rd and 4th grades this week. All four are white and male although white males only comprise 15% of the student body.
  24. I agree with you...we really don't know the true numbers of children afflicted with this...Another thing that Dr. K said in his radio interview on Autism One was that the mothers of PANDAS children have non-interfering obsessive tendencies...describes me to a T--although my DH doesn't think my obsessions are non-interfering...LOL...however, I think Dr K. has observerd this because it is this type of personality trait that is not going to let up until we find out what is wrong with our children! DITTO! Every intention at mass, candle I blow out, penny in a wishing well... If I
  25. I like acronym games, but don't have the medical chops for this one. How about from a parent's point of view... PANDA BARE Pediatric Autoimmune Neuropsychiatric Disorders from Abundant Bothersome Antibodies Ruining Everything
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