gremlin44

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 won't cause further flares?

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 the view is on the hepatitis shot at this age in particular. Help!

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?

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. With Allegis Group’s CDHP, you are covered by the BlueCross BlueShield Preferred Provider Organization (PPO) plan. With our BlueCross BlueShield PPO plan, you do not need to choose a primary care physician and referrals are not necessary. You have access to see a healthcare professional inside or outside of the national BlueCross BlueShield PPO network." So, is this different? What kind of results have people got with national BCBS PPO for IVIG (I anticipate DS1 will need another). So confusing. We've been with UHC for 18 years now and I don't want to change. Thanks!

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 week high dosage of augmentin followed by daily maintenance augmentin take care of that? If not, how long do you have to wait post IVIG to test for myco-p? People mention the rage associated it, and that makes me curious because that has always been one of my son's issues (along with others). Sorry if this has been covered--I've been searching through the archives and trying to find a simple discussion. Thanks!

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 they actually paid! Dr. K and the surgical center are both out of network, so it is 80% coverage after deductible is met The codes used were: 279.9 Unspecified disorder of immune mechanism 348.30 Encephalopathy, unspecified 348.39 NEC Other encephalopathy I won't believe it until I get paper statements from them and have refund checks in hand, but WOOOOOOO!!!!!!!!!!!

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

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.

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.

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.

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.

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 to go to the bathroom again, stop wiping over and over. What a great combination!!! And my 3 yo knows it bugs the 8 yo, so he gets off the toilet and chases his big brother down the hall, naked and singing "PEE, POOP ON ME!!!", while big brother shrieks and runs away. The 8 yo just had IVIG, so I'm keeping him away from the public in general right now. I just started having a friend or two over whose parents I've interrogated as to their health status. The minute they walk in the door I have them wash their hands. And then I watch them like a hawk to make sure they don't share cups or snacks. Gee, whose phobic now?

*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!!

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

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!