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Everything posted by gremlin44

  1. Curious if anyone's PANS kid wears contacts? Did they cause a flare up in your child? My almost 13 y.o. is begging for them. Part of me is tempted to get them--he's ruined two pairs of glasses this year in rages, and at this point they are held together with glue until insurance is willing to pay for another pair. But I'm worried that the irritation they will cause to his eyes as he gets used to them will trigger him (everything triggers him--allergies, growth spurts, teeth coming in). Do you think that after an initial period of getting used to them then his body will accept them and it
  2. I got an email from the school nurse pointing out that the third shot in the hepatitis series is required for students in our district by 5th grade. My son just entered fifth grade this year and I had forgotten about it. She needs a medical exemption or proof of an appointment to get the shot by the end of the day. He has had 2 IVIGs from Dr. K--in summer of 2010 and summer of 2011. He still flares up when he gets sick or is around lots of sick people, but in a mostly controlled way. He is on daily Augmentin and motrin. I don't remember what the current medical advice is and what t
  3. My son had IVIG with Dr. K under UHC (out of network) 2 years ago. It was covered. We just started the process to have another one this summer. Under UHC's current position papers, PANDAS is an approved reason to do IVIG. They have a list of ICD codes for IVIG, but none of them are ones that were used by Dr. K for the first one. He will be filling out and faxing in the preconfirmation form soon, and I want to try and make sure that we use codes that are acceptable to UHC. Anyone do a recent IVIG through UHC and know what ICD codes were used?
  4. My husband is looking at a new job and I asked him some questions about their insurance policy. We have UHC PPO and had an IVIG with Dr. K last summer...it was approved. This potential job is with a national company who offers BCBS PPO. It calls their whole health care an Allegis Group and has info on Carefirst. So, does this differ from the info that I'm seeing with peoples' plans being listed as BCBS of State XYZ? We live in Illinois but the company the job is for is national and the benefits policy says "No matter how well you take care of yourself, medical issues will arise.
  5. I was away from the board for awhile, and missed out on the new things like lyme and myco. I've been reading a lot more since our IVIG with Dr. K in July. Am trying to figure out the myco P stuff. My son was exposed to strep (but did not get sick) twice around the time that his PANDAS began when he was 4. But he also had walking pneumonia twice when he was 2. Since he was 4 he's been on preventative and high doses of zithro at different times. Dr. K tested the ASos and IgGs and such, but not myco. Should I be concerned about that at this point, or does the IVIG and the initial 2 w
  6. We have UHC (stayed with them and are paying Cobra level payments even though my husband has a new job because as of earlier this year they claimed to be paying IVIG for PANDAS) and were worried when earlier this summer people started having problems getting IVIG coverage with them. We did IVIG with Dr. K August 6/7. We were told that the procedure codes he gave flagged a need for precertification, but of course, UHC didn't get it done in time, so we paid upfront and went ahead with it. Been checking the ins. co's website every day recently. And just today it showed up--it looks like th
  7. Hey, Priscilla, would you mind emailing me the file as well? I'd like a fast way to check my DS's post IVIG progress. gremlin44 @ gmail
  8. Extra money...ahahahahahahaha. :-) We just had IVIG with Dr. K and are going to be fighting with UHC to cover it, so we had to pay up front. I think I'll just stick both kids in plastic bubble suits for the rest of their lives.
  9. So, should I just hold my breathe and wait? Should I test proactively? We haven't done Cunningham with the eldest, so I don't have a point of comparison for him.
  10. I mean, I am aware of multiple families here on the board with PANDAS siblings. I'm just wondering if there are any numbers on this.
  11. Has anyone seen or collected any data on the incidence of PANDAS in siblings? I have a nearly 8yo who was diagnosed shortly before he turned 4. I also have a 3 yo son....and that's who I'm wondering about. We have a clear genetic link to OCD--my father had fairly severe OCD. The 3 yo enters preschool this fall, which is where my elder son got his strep exposure. Needless to say, I feel like I'm going to be walking on eggshells this whole year, staring at his every behavior, wondering if it is the beginning of PANDAS. The older one just had IVIG, so this is on my mind a lot.
  12. Right now my 8 yo PANDAS son's obsessions revolve around urine/feces. He's constantly afraid he's soiled himself/his underwear/his clothes. Every wet spot on the floor/toilet/his clothing must be urine. He's always checking if we washed our hands, etc. Of course, a few weeks ago we had to potty train our 3 yo son to be ready for preschool this fall. So now we're always asking the DS3 if he needs to go potty, is he sure, are his undies dry, make sure you wash your hands, you need to wipe better, etc, while telling DS8 to stop worrying about his undies, they are clean, no he doesn't need
  13. *waves* My son and I were there on Friday for our first day (the non stop talking boy in the middle cubicle. My son was not hyper before, but on Saturday he was WIRED!! Non stop talking to Lana, refusing to sit or lie down. The minute our movie was done he was up and trying to visit the kid in the other cubicle. Lana even told me to take him and his IV pole for a walk through the building, up the escalator, and around the 2nd floor. He never got drowsy from the Benedryl, never got cold, and is going full speed + 10 today. Me--I've got the headache and nausea and the exhaustion!!
  14. Dr. K mentioned today during our IVIG that he had just recently had a patient from Oak Park, IL. We live in Oak Park, and my (nearly) 8 yo son and I would love to talk to someone local. If this is you, please give me a ping: gremlin44 @ gmail Steph
  15. Forgive me if this info is already out there...I'm having problems with my computer and the search engine. My nearly 8 yo (about 50 lbs) is having IVIG with Dr. K tmrw and Sat. I got some bentonite clay from Whole Foods from their bulk powders department. What amount should I give him and how (dissolved in water or juice or yogurt or straight?) Thanks!
  16. My 8 yo son's IVIG is this Fri/Sat with Dr. K. I'm completely comfortable with the procedure itself. What is starting to give me anxiety and panic attacks is the "turning back of the pages" total regression/symptom flashback that Dr K and many on this board mentioned. When he says a large percentage, how many? Did anyone here not have that big or long of a terrible post IVIG period? We got scheduled as soon as we could, but my son's school starts Aug 24. Terrible timing, but we couldn't get earlier and we couldn't wait til next summer. My son can get physically violent with
  17. But how? I tried pressing the woman on the preapproval line (not member benefits) and she stated flatly several times that it was not required.
  18. Dr. K's office told me to call UHC/PPO to ask for pre approval. I called UHC and gave them the cpt codes and they said they don't need to give me pre approval/cert for this. And of course, Diane is gone for the day now. Huh? I do know Dr K and the surgical center are out of network for me. I'm just so afraid of messing this up. So basically I won't know until I get a bill, is that it?
  19. I just had an in person consult with him today. Already had a PANDAS diagnosis for my son, wanted to see if he would be a good candidate for IVIG. He told me that parents can decline the steroid burst. Because I want to get this done before school and give my son a few weeks to recover/"turn back the pages" before he starts 2nd grade, I did decline. IVIG is scheduled for Aug 6/7. He was not upset or pushy about the steroid burst in any way.
  20. I have a nearly 8 yo son with PANDAS. It has gotten considerably worse this last school year, so I was overjoyed when one day I heard via the grapvine that UCH covered IVIG. We live in the Chicago area, so we decided to go ahead and get an appt to see Dr. K. My son is supposed to see Dr. K tomorrow afternoon. I haven't been on these boards for a while due to many other life issues, but I decided to pop in tonight to read up on IVIG. And now is it correct that I am seeing that people are having problems with UHC denying IVIG coverage? What's the most current experience people are ha
  21. My 4 year old is now on a once a week (2 doses that day) prophylactic dose of Zithro for PANDAS. He had his first double dose day last Saturday. I've noticed this last week that at bedtime he is suddenly very thristy and drinking a lot of water. This kid normally doesn't drink much all day. Has anyone noticed a similar symptom in their child?
  22. My 34 pound 4 year old is on a once a week (1 1/4 tsp two times that day) dose of the liquid azithromycin.
  23. Does anyone know of a website or program to help you track your child's OCD/tic symptoms? My son has PANDAS, and I think it would be so helpful to have something where I could go and just click boxes to indicate what symptoms are occuring each day. Kind of like those fertility tracking websites like FertiltyFriend if you are familar with that.
  24. How long after the end of the first round of antibiotics should you see the symptoms "end" (I know from what I've read that some kids have small symptoms that persist and are worked on with CBT)? Some things I read said initial episodes last 30-45 days, but I couldn't tell if that meant from the time of the first OCD behaviors or if that started from the day the antibiotics ended or what. His doctors and I would prefer not to have him on a prophylactic dose of penicillin due to his age and weight (barely 34 lbs). We have an appointment with a child therapist who does ERP on Thursday.
  25. I'm new here and am trying to figure something out. I, my pediatrician, and a pediatric neurologist all believe my recently turned 4 yr old son (9-11) has PANDAS. However his rapid swab test and blood work came back negative. We know there was strep in his preschool class back in May. On September 6th (2nd day of preschool this year) we got a note saying that someone was sick with strep. On September 10th he was hot, tired, complained of a sore throat in the morning, stuffy headed. On September 11th he seemed mostly recovered. We figured he was just crashing after his birthday par
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