Jump to content
ACN Latitudes Forums

IrishMom

Members
  • Content Count

    11
  • Joined

  • Last visited

About IrishMom

  • Rank
    Member

Recent Profile Visitors

554 profile views
  1. Hi all, when my panda is not flaring, her main issues are inattention, inability to focus. We recently started Intunive, lowest dose possible. Might be seeing subtle improvements but too early to tell. She's been deemed to be highly intelligent for her age. So, I want to explore other meds/options that might help with her focusing. Also, any recommendations for school settings in which she could have a lot of 1:1 attention? We're located in St. Louis. She's at a small private Catholic school that we like, but they just don't have the resources that she will need to thrive. Thanks, K
  2. Hi, my insurance United Healthcare denied IVIG for my daughter recently diagnosed with Pandas. Our dr. had a peer to peer phone call with a United medical director and the denial was upheld citing IVIG as an "unproven therapy." I am appealing this further. I've done some research but want to prepare a solid and thorough rebuttal. Does anyone have advice on how to do this or do you have success stories for when these appeals worked? thank you in advance!
  3. Hi, my 5 1/2 year old daughter is soon having a tonsillectomy. She will then have her first IVIG treatment sometime in the months following the surgery. She's in a private, Catholic pre-school (for mostly 4 year olds) right now and am thinking she has a long way to go to be able to be ready for Kindergarten at the same school. (She had recent flare after croup and lengthy cold.) Her daily challenges include difficulty with transitions, inattention, fidgety, lack of listening skills, hyperactivity, wetting accidents, adhd type behavior, outsized emotions. On a flare, she has all of these plus r
  4. 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
  5. 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 t
  6. 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 uncomfo
  7. 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 t
  8. 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 sympto
  9. 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
  10. 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!
  11. 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
×
×
  • Create New...