Iowadawn

Hello! I love this forum! I told my husband I'll see what help I can get from our PANDAS buddies! Everyone who has experienced insurance difficulties probably have unique reasons & explanations for being jerked around, ours is just as unique. Our son had IVIG at Oakbrook Surgical Center Oct 2/3. We live in Iowa and WERE pre-auth'ed for the procedure. We ahve excellent insurance . I am wondering if any of you that have had IVIG, and have BCBS in Iowa or Illinois, and have had a final EOB stating how much Illinois allowed--would PM me with how much Illinois is paying. Dr. K was paid lickety split. Illinois is saying all they would pay to Oakbrook is about $500!!! End of story. IA says it goes by that amount, has questioned it, but too bad, "you'll need to appeal". We ahve been fighting this for over two months, now. I can understand your hestitation to post this info, but could you reach me through PM?? As anyone that has had this procedure done you understand the number of dollars on the line--about 11k for us! FYI, Oakbrook is no longer a PPO provider for BCBS in Illinois. Their contract with BCBS expired TWO days before our son's procedure and it hasn't been renewed. That isn't our real problem, though. Can you help me out with some numbers?? Thanks! Dawn

Where about in Iowa do you live? So few midwest posts. We live near Des Moines. A sharp young psychiatrist, Dr. Sasha Khosravi connected our son's "array of dots" and suspected PANDAS. He referred us on to a Dr Stephen Elliot at Blank Children's. After a year of Dr. Eliott's insistence that penicillin WILL WORK (it wasn't-not even Bicillin injections), we ended up in Chicago with Dr. K. I do know that Dr. Khosravi and Dr. K have visited at length not too long ago--I hope our son can "help" trx in Iowa. Let us know how the other two contacts work out. Dawn

Hi all, from a snowy Iowa! My gut hurts from instinct!! My 15 yo's DD doesn't have "stomach issues", like reflux, too much acid,feeling like you want to throw up, effects of years- with a PANDAS brother--SHe has strep!!! And has had. 756/5700 Those numbers are real! MADE them send the AntiDNase B on to the reference lab as it had topped out at >1360. I shrieked when they phoned with the real results. All of us were cultured for strep following Evan's IVIG. She came back with very light strep. I made them treat her. Hmmmm. Two days in the tummy issues subside. Two days out, tummy issues return. Simple. Well, h. pylori is killed by the same abx. Time to draw blood. I inquired about a possible strep connection with the stomach at the time we got the culture back and need to check this out. Doc felt it was typical acid stomach issues. We returned after symptoms returned at the end of round of abx. I insisted that the strep be checked along with possible h. pylori. I WAS RIGHT. I emailed drK since he treated our son. He asked about anxiety. Yeah, there's some anxiety here. The counselor we see picked up on that. I explained what we had been seeing with her & what the counselor has seen/heard and he feels sshe may have the first symptoms of adolescent/adult variant of PANDAS. He referred us to his website and the adol/adult variant and she does fit the bill. We commented to each other that it seemed she did mellow out while on the 10 days of Amox. I went back to our GP armed with email coomunications from Dr. Cunningham and now have her on 250 Zith/day x 30 days. Dr. K wants to see her. Back to Chicago we'll go as I am just plain tired of PANDAS. He says he can probably get her in before Christmas. We have been dealing with PANDAS behaviors for 9ish years before IVIG in Oct. My heart hurts thinking how long these two could have been ping-ponging! My boy's titers were very high, but not this high. Our son got awful. Dr. K says that IF it is the adol. variant it is much easier to treat. BTW Our son is 11 weeks out from IVIG. we continue to see improvement in the ability to express himself, what's bugging him, use of coping skills, more pleasant demeanor, ability to not get so stuck in his thinking, acts more like a true 10 yo. Volatility has improved-it's much better. His ability to occupy himself, find something to do is getting there. He was invited to his first birthday party and went today. He had a ball. Now he can't wait to have his in March! I am not naive enough to know we have bumps ahead. These post IVIG weeks have been bumpy. Dr. K is now working with our psychiatrist and they have started to wean him off the drugs he is on. Crossing our fingers & toes while we pray. So far, so good. Any word of wisdom, anyone. Buster, anything to offer? Dawn

It's a bummer that you had to come looking for answers, but it may be a blessing in disguise. IMO-run, don't walk to a doc that will at least consider a PANDAS dx. We didn't even have a strep infection that we were aware about in the past before our 10 yo was dx'd with PANDAS. You have all the makings and symptoms. Where do you live?? It may just take a little phone work to ask if a doc at a clinic is aware enough about PANDAS to take you seriously. I found our young doc, though not knowledgable about PANDAS, to be open to working with us, though we eventually ended up going to Dr. K in Chicago. I wouldn't mess around hopping from doc to doc. Get trx. Sooner it is trx'd, the more rapid & complete the recovery. Hindsight is always 20/20, but we would have been "less patient" with the care/improvement we were getting for Evan--and that was WITH a dx. The infectious disease doc was emphatic penicillin would work. We had to jump ship on him. Anyway....I'm saying a BIG HMmmmmmm. Sounds real fishy. Take care. Keep us updated on your "adventure". Dawn

Our 10 1/2 yo son is 10 weeks post IVIG. It's been pretty bumpy lately. My main question is if you post IVIG'ers have witnessed the "return" of behaviors that you have never had in the first place. I discovered that Evan has had some wetting issues that he now says has happened since IVIG. Also had a meltdown yesterday that included him saying that "there are people throwing rocks at him"., "hurting him", "out to get him", " really bad thoughts". He said this started in school last week. This was a different type of fight or flight than we have had. At the time it sounded as if the "people" were right there, but I think it was more of his thoughts gone wild. We have seen some encouraging improvements after many years of this. I think the trend is positive among the bumps. The last couple weeks have been disconcerting, though. Dr. K did put him on 875 Augmentin 2x/day. For three months post IVIG, for now. So, have any of you heard of flipping back to pages that weren't there to begin with! Or is different-"good"?? Dawn

I would strongly recommend against using a steroid burst unless the child is clear of a harmful bacteria like GABHS. Steroids work by suppressng the immune system response. This means that if the child has GABHS, it is even more likely that the bacteria will grow without check. If it is PANDAS and in particular if you are in an exacerbation, ensure there isn't strep first. Buster Hmmm. Maybe that is why the steroid burst wasn't all that conclusive with my son---we hadn't gotten the strep eradicated at the time of the steroid burst with Dr. K. He went into the IVIG without being cleared of active strep-based on titers that were up & down (really high & higher) along w/behavior. We requested to Dr. K that Evan be placed on high dose abx after the IVIG after hearing of some successes with this. I was afraid we couldn't get the strep and boost the immune system with IVIG and a prophylactic dose of Augmentin. He agreed. He has given us 3 mo of 875 2x/day. We are 9 weeks out & seeing progress! I really wonder how accurate an indicator a steroid burst (5 day) is in these "chronic cases. Just some thoughts. Dawn

Re Fox News: Our 50,000 watt major a.m. station in Des Moines, IA (WHO) that is heard everywhere at night runs Fox News. They ran the story late last night on the radio!! I'm excited. Dawn

PS after reading the posts that got in before mine. SSRI's caused disinhibition with our son. He got worse. Seroquel and Abilify didn't do a thing and probably made things worse. Namenda is the only one that I would give a thumbs up to for my boy. Of course, every child is so different. Dawn

Laura- My heart aches reading about your situation with your son. I just want to reach through the screen and help your son!! What were dr. K's impressions?? I, too, am a bit confused. We have a son that is 10 1/2 and just had IVIg with Dr. K. We truly believe he was an early onset case, as does Dr. K. His titers were screaming high, his CaM Kinase was 184%, and his response to the steroid burst was only so so. Too abrupt start; too abrupt stop with some good signs in between, then he crashed. I wonder how good a short burst is as an indicator. My son's mycoplasma pneumoniae IgG was extremely elevated. Dr. k says he sees so many raging kids who check out with this high titer. M. pneumoniae is known to cause encephalopathy, too. I agree that it sounds as though your son is in pain. Hugs. And Prayers for a road to healing. Dawn

These whitehead-looking bumps--our son gets them, too. In fact, they are pretty prominent right now and his behavior is pretty bumpy. (9weeks post-IVIG). I have wondered about these as they get more, or less prominent. Hmmm. Makes me want to see what they are made up of!! Dawn

Erica-It can feel embarrassing dealing with behaviors in public or around people you don't know. Believe me, we have had our share of experience. Wee..! Yeah, and the "inconsistent parenting" remarks. They can bite. First, you do not owe anyone any more of an explanation than you want to offer. If it is someone you see/rub shoulders with fairly frequently you may give them a little explanation at a "neutral" time. I would come up with a simple succinct description of PANDAS. I find the term PANDAS throws people-then the glazed eye look sets in when you explain the acronym!! I stick with "an autoimmune response....." Any person in our situations is going to feel embarrassed. No amount of getting torn inside about it is going to make people change the way they think. Maybe after 8 years of reactions or looks I am getting (finally) steeled. Comments like your example are just plain rude. In the category of MYOB. Hang in there. Dawn

Do many of the children have scary intrusive type thoughts? Doug- I am glad you found this forum. In our experience, a young doctor that was willing to learn and "practice" medicine based on the info/research we shared with her was beneficial for us, even though we eventually ended up going to Dr. Kovacevic in Chicago. Sounds as if you are jumping on this--keep jumping and kick it in the behind!! Get the strep. And once you done this stay on a prophylactic dose. Intrusive thoughts are very common among PANDAS kids. An OCD component. All the things you mentioned are classic PANDAS symptoms. You can get you dd back 100%! Take Care. Dawn

I think I remember Dr. K telling us of the six coming to this summit, as he called it, 2 were always PANDAS proponents, and 4 are converted opponents. Dr. K can be "interesting" to listen to, but in this conversation he was mentioning a doc from Mayo, J Hopkins, and another eastern doc that were all naysayers until they had personal experience and sent their patients to him!! I know Dr. C (at least a month ago) was not included, because I asked her. Now, that may all change. She said she didn't want to rain on their parade and toot her own horn by "inviting" herself. But, I agree, in this day and age when nobody has to even travel, can everyone in the know discuss what is going on in his PANDAS world. Dawn

Bubbasmom- You are about 4 weeks behind us with the IVIG. Our sons sound very similar symptoms-wise. Also on Risperdal and a couple other drugs. Our boy is 10 1/2 and and an early onset case that was mis-dx'd. We were scratching our heads at the 4 week post-IVIG point, too. Is he or isn't he getting better?? We are able to confidently say we are moving in the right direction now. Right now we are cycling through a separation anxiety thing with "WHere's mom, why aren't you back (panic), you have been gone so long, YOU need to tuck me in, I don't want you to go.....???" Rage has been our biggest issue, but tics & perseverative (OCD) thinking were right up there. Overall he seems so much more like a 10 year-old. If you have any questions, ask away. We did have Dr. K put him on high dose abx because we just hadn't ever gotten the strep eradicated and his titers have been extremely elevated. Dr. K says he will work with our psych to ween him from the drugs once he has smoothed out. Are you sure what you are noticing while he is sleeping is actually tics? Tics, by definition, disappear while sleeping. Could there be something else happening? Someone correct me, if necessary. You will more than likely hit rough patches. What I can say is our rough times are not as intense nor as long-lived. Hang tough. I'm confident for you. Dawn