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NVAmom

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Everything posted by NVAmom

  1. I agree with making an appt with an expert and then canceling if your dtr no longer needs it. As long as you cancel the week before there should not be any cancellation fee. Better to call for the appt today and find you don't need it 2 months from now....then be in a crisis and call to schedule an appt and find you have to wait 2 more months. In terms of seeing a neurologist....remember Dr L is a neurologist. I wouldn't dismiss the local dr because they are a neurologist. I would call ahead. Ask if they treat pandas, and if so, how do they treat pandas. Sometimes you can get them to hel
  2. We use a swing with dd8 for sensory issues. Before she started Augmentin we had to push every AM and heat her clothes in the dryer to get her dressed. For those of you considering a swing Ikea has some reasonably priced. My husband was able to hang it from a beam in our unfinished basement. I don't think we have used it for meltdowns. Will have to try it. Thanks!
  3. Wow! How fortunate for this family to have you as their son's teacher! I have a 12 year old who struggles with any creative writing assignment. Here is what helps him: Extremely specific details for completing assignment. For example- 6 paragraphs, each paragraph must have a minimum of 5 sentences. Over due the prewriting: we tell my son he needs x amount of details for each paragraph. He generates a list of ideas for each paragraph. Depending on his ability at the time, either he writes down the details or he dictates to me. He also takes breaks after each paragraph. The details shoul
  4. Okay, my ds and dd see dr L and my ds has also had a consult with Dr B. Insurance will not pay for either one. We are trying to appeal. We are basing it on not having PANDAS dr's in our local network....that they should approve care with dr B because he is in network for national coverage when we are traveling out of our local area. However the insurance has identified a dr with the medical college of virgina that treats PANDAS. I have no illusions that we would use this dr instead of Dr L or Dr B. However, in order to pursue the appeal I need to investigate this other dr. My question is wha
  5. Forgive me if this has already been shared but I have to post this in case it can help just 1 other family. Insurance had no problem paying for Augmentin 2x/day for over a year. However, my ds12 switched to Azithromycin recently. The insurance will cover a 3 day supply every 30 days. I called around and Costco by far was the cheapest in our area. However, I just found out the same script through their mail order was significantly cheaper than even the local Costco. A 90 day supply through their mail order is less than than a 30 day supply at the local store! Hope this can help someone! It def
  6. What is the difference between a burst and taper. We've done the bust before so I know what it is. Is a burst just an equally dosed short term steroid with no taper? How long do you usually do a burst? Is ia burst the lowest dosage of a taper? I think I remember a burst is sometimes used diagnostically to see if there is improvement it can be more definitively diagnosed as PANDAS....i think.So is a taper only during exacerbations? Sorry for all the questions!
  7. My ds12's hands and wrists are very irritated from constant handwashing. We are alternating aquaphor (the thick Vaseline type) and a honey oatmeal lotion. Would appreciate any other suggestions. Thank you!
  8. We have not seen bad dreams with melatonin. However, I think it may have made my son irritable the next day....BUT that was before we knew about PANDAS so it could have been exacerbations and not the melatonin. We use it with our dd8 and I haven't noticed any side effects. The first time I gave it to her she took it with her augmentin and did not even ask what it was or why she was taking an extra pill. The next morning she woke up and said 'I've never fallen asleep so fast before'. I give her a 3.5 mg pill cut in half when she is having an exacerbation or has mistakenly had food dyes. I hope
  9. We saw Dr B this week. He recommends switching form Augmentin (875 mg - 2x/day) to Zith (250 - 2x/day) and starting a steroid taper. For those that have switched from Augmentin to Zitho I'm wondering what to expect. Also, My Antistreptolysin O Ab were 492 on 11/10 after 10 days of Erthromycin 333mg every 8 hours for 10 days Antistreptolysin O Ab was 557 on 11/23. Both were drawn at same lab. I saw an Infectious Disease dr that recommended that I have a Bicillin shot and then recheck the Antistreptolysin O Ab. however, as a child I had a reaction to pencillin resulting in hospitalization (M
  10. We saw Dr B earlier this week and stayed at the Doubletree. We had the special rate and were very pleased. You have to ask for the "We Care" rate. I don'tknow where you are coming from but if you are close to an Amtrak you might check their rates. I think for the best discount you need to do 2 weeks ahead. I was amazed at the Amtrak rate. if you call ahead the hotel will pick you up at the station. Oh, and check different options - round trip and 2 one way tickets. It was cheaper to do the trip as 2- 1 way tickets as opposeed to round trip.
  11. I think a little humor is a necessity while battling PANDAS....and here is some to lighten your day. We are going to see Dr B this week. We are taking the train. In an attempt to make it fun we are stopping in New York on the way back. First of all... What were we thinking!?As my dh and I are looking at tix for the Statue of Liberty we needed to decide if we wanted tix to go in the crown or just to the island. I asked my ds12 ....again what i was thinking...he is against even getting on the ferry....afraid the boat will sink. I ask dd8 if she wants to go up in the crown. I tell her there
  12. Our results came At 2 different times. The second set came about a month after the cam kinase score. I remember it was so hard to wait:(
  13. Glad to hear it went well. Praying for a speedy and uneventful recovery!
  14. My son tried acyclovir because frequent canker sores were causing symptom exacerbations. We just recently started generic valtrex and it was a $10 copay for us....and our Insurance is not very good. Is the dr willing to try generic? Our bottle reads 'valacyclovir' . Hope that helps. Debby
  15. Hi, for those in the DC area are you aware of any way to designate contributions to benefit pandas research? Thanks! Debby
  16. Both my ds12 and dd8 have been having rages and emotional melt downs this week. I thought it was a reaction me having pink eye..... Which probably is part of it. However, my dd8 is very sensitive to red dye (red dye=RAGES). She has been eating 1 cupcake after dinner every night. A box made cup cake and then frosted with the can frosting....yes I know bad mom to begin with but didn't have the strength for homemade. Then crescent rolls last night with dinner. She was sent to bed shortly after dinner for her behavior. This AM I read labels... Didn't think to at the store because they aren't red.
  17. Thank you for taking he time to post this. It seems lately our steps are only backwards. Can I ask if your dtr remembers 'the bad times'? My ds seems to 'wipe' them from his mind. I am so happy to hear your family is doing well!
  18. My son's first tic (throat clearing) started around the same time as starting Zyrtec. I remembered wondering at the time if it was from the Zyrtec but the dr said definitely not. I still wonder if it contributed by drying his throat so much that it started as a legitimate physical issue but morphed into a tic.
  19. I'm so happy for you and your daughter! Thank you for sharing!!
  20. I was watching sponge bob with my dd8 this afternoon. There was an episode with angry scary sea snails that were terrorizing the city. Sandy, the squirrel, took a sample from a snail and examined it under a microscope. She discovered the snails were acting that way because they were actually sick. The snails got some sort of medical treatment and became regular friendly snails. At the end of the show someone ( I think squidward) said ' are you telling me these snails went crazy because they were sick?'.....something like that. Is that 'art imitating life'....or what???? Or am I just realllll
  21. Defintely keep a journal as already mentioned and consider adding a rating system for the symptoms. Even if there is a step backwards you can see the overall progress that has been made from the beginning of treatment. For example, we rate our son from 1-5 on mood, OCD, anxiety, handwashing, tics etc.
  22. I just got my dd8 Anti-neuronal Antibody titers. Her Cam score was 139 which is in the PANDAS range. However, her titers were all within normal limits...the Anti-Dopamine 1 was right at the cut. Normal is 500-2000 and she was 2000. She does not have tics but does have significant sensory issues and urinary frequency. We have her first appt with Dr L tomorrow (my son sees her but this is dd's first appt). Just trying to prepare myself before we go. Thanks for any input!
  23. is your daughter seeing a neurologist for pandas? you may want to investigate migraine headaches with aura. when i have one, i cannot read correctly -- the words are a little off -- some blurry but not really in a straight line. there can be many strange symptoms with the aura. Thank you for the information. We have our first appt for her with Dr L the end of this month. Are you able to function and get through your day when the migraine happens?
  24. My dd8 began complaining of trouble seeing the overhead about a week into school. I took her to an optometrist and said she was so close to 20/20 that glasses were not needed. She also complains of headaches. This morning she told me that all the letters blur together and she can't make the individual letters out. I told her we could try another eye dr and would live more info before we go.
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