Iowadawn

We are going again next week. Last time we stayed at the La Quinta Inn nearby Oakbrook and rec'd a super discount. Wonderful breakfast. The benedryl will probably make your child sleepy and snoozy for a while. You'll crash for a bit from the letdown from finally getting there. All the other ideas and comments/suggestions are great. We appreciated Dr. K in person VERY much. Don't be afraid to ask questions. He may act like he's in a hurry, but he always stopped and gave us thorough answers. Best wishes & prayers. -Dawn

Nita- Hold fast. We have had the same kind of behavior so I can empathize. Three weeks post IVIG was about the point where our son came out of the incredible crazy behavior and started into a bumpy, yet clearly positive trend. He is 11 and has had this a long time. We are returning for a second IVIG next week with Dr. K. We asked to have him put on hd abx and Dr. K has had him on some since October. I will ask again after this one. We have had a heck of a time because our family unknowingly was a strep factory and he crashed 2 1/2mo post. All five of us has been on hd azithromycin for a month. Look at the big picture, sometimes "different" behaviors are a good sign, even if they don't look that good. We sure saw some weird ones right after the IVIG! Weee! Like rapid cycling bi-polar!! Hold tight. Dawn

No hate mail just our experience with a more than likely chronic case of PANDAS for our 11 yo son. It took 3 child psychologists, a LMHC, pediatrician, numerous developmental type professionals and a sharp young psychiatrist & infectious disease doc 9 years after it probably all started to finally get a PANDAS dx for our alphabet child. And then another 8 months to find this forum and another few months to Dr. K. It wasn't because we were in denial that there was a problem with our son that we didn't get the proper help sooner. We all have so many variables/resources (not just $$) in our lives that can determine how we finally come to the dx of PANDAS. Why "the stars all align" more quickly for some parents (or God forbid, not at all) and proper trx is initiated has so much more to do about fate (I'll not go into my Christian beliefs about this) than whether we parents are avoiding searching for what is really wrong. That's a heavy burden to carry. I shutter to think how many families haven't the foggiest clue about PANDAS, let alone have found this forum or the right doctor/professional to help their young child whom they know is not well. -Dawn

Give me a call if you want to talk. We are late getting to bed tonight, so with the time difference it should be perfect. It was WEIRD bumpy. Like rapid cycling bi-polar. Nasty, beligerant, drunken sailor BLECK. For about 2 1/2weeks, Don't hesitate to call. Dawn

My first thought was Bourbon (when I read the word Berberine).....Yeah I think we could all use some of that, too. Dawn

They need to see that its cheaper to do IVIG than to provide a lifetime of ineffective psych meds. Or a stay in the psych. ward... or two or three or more stints in the hospital and a couple partial programs....weeeee$$$$$$

Worried Dad- Well--Gol----ly!!! Sounds JUST LIKE OUR EXPERIENCE. Oakbrook ceased being a "Bluecard" provider two days before our son's procedure & this royally screwed up everything. We took 5 months to see the checks!! Our Bluecard dept in Iowa BCBS did go to bat for us and reimbursed at the rate had we had it done in Iowa. They had to get techy guys to work around the confines of their computer system to pull it off. We just kept squeaking. Oakbrook was no help. We got a variety of stories each time we called. It was very frustrating. We were pre-approved. That probably saved us and the fact that we were pre-approved prior to Oakbrook cutting with the national BCBS provider program. We learned alot about how the whole BCBS works in the country. Don't leave the confines of your state or you are at the mercy of the BCBS ASSOCIATION. Never heard about this entity until our experience! We had an autoimmune disease NOS & encephalopathy NOS for dx codes. They are a provider in Illinois. I think 7upMom will come out fine with pre-approvals. -Iowadawn

7upmom- Call me. I'll try to help. Dawn

Johnsmom- Our son was dx'd with convergence insufficiency along with accommodative insufficiency, he had one eye starting to shutdown (amblyopia) because of the binocular problems. Saccades & pursuits were not good. Vision therapy pretty much did the trick. Pretty intense therapy for 32 sessions (2x week plus homework each other day). Frankly, I do not know how we accomplished the homework, as we look back!! His eyes often ached. I thought it was strep/PANDAS related, but the docs didn't think so. He seldom complains about this now on abx &post IVIG. He was very sensitive to the light when younger. The optometrist said that they have had several kids with PANDAS have vision therapy. Dawn

A BIG Ditto on the EMDR. It is the one thing that has been very effective helping our PANDAS son process and get "unstuck" on very emotional experiences. E.g., returning to school after being in the hospital, stuck on being scared & angry .about a situation. When used on kids, a therapist needs special training. Oh, and other bilateral stimulation besides eye mvt . is often used with kids. Tapping, buzzies, auditory. It has been the fastest, most efficient method to help him "move on". It sounds really hokey. It is not. Dawn

Kara- Love that name spelled this way. Same as our dd15. Anyway, after 9 years of trying to figure out what is wrong with our son, we rec'd a dx that got us going in the right direction. It hasn't been a straight one--yet, but we are making progress. So...don't waste another day, month, year putting your family through the symptoms...wondering...hoping...waiting...trying to "educate a doc"...searching. The years pass so quickly. Get to a doc that treats PANDAS, eats, PANDAS, sleeps PANDAS. Your questions will get answered, & IF the dx is PANDAS you can get your child well. It would appear that you have a cooperative, caring doc at your end. This is INVALUABLE. An expert to go along with this doc-- IF the dx were PANDAS--would be awesome. If it isn't PANDAS, these specialists certainly could get you pointed in the appropriate direction for care. Your situation sounds suspicious enough to investigate further. Dr. Kovacevic (Dr. K) has a website: webpediatrics.com If you suspect PANDAS he will answer your email--usually w/n a day. There are other docs that are listed on a thread. My point: Don't waste any time trying to guess, or wonder, or get this opinion or that (hey, we love you, don't get me wrong & want to help! Many of us on here have had a lot of years under our belt without a dx. What we would give to have found out about a PANDAS doc sooner. Best wishes & prayers. PM if you wish. Dawn

Our first appt wasn't all that great because we had been told by his office person to fax medical records for him to review before our appt. We did that thinking that Evan's case would be reviewed ahead of our visit and give us a jumping off point in the visit. We were disappointed when he walked in and had no idea why we were there, hadn't looked at anything and were were left scrambling. SOOoo......A synopsis, bullet points, that kind of thing will be BEST. He operates on a slightly different frequency so this kind hx report from you will go a LONG way. Yes, I do think he is getting swamped. Our experience with Dr. K at the IVIG was much different. We really began to appreciate his care. Dawn

I'll let you know how things go--went to our local GP today. Came home with scripts for all 5 of us for Zith for a month. Also, hubby has marching orders and items to help the machine stay sanitary coming in the mail. He also had the machine as apart as he can get it in order to clean it. We have no idea if this could be an issue, but I can see where it might keep him constantly exposed if there was a strep problem. We'll give it a whirl and keep you posted. I don't know why the possibility of the CPAP machine being a culprit waited until last night to hit me like a 2x4 over the head. Dawn

Our pandas son required LOTS of sleep & naps, particularly when he was young. Dawn

Worrieddad- Dr. K seems so stuck on Augmentin with us. I mention zith or biaxin or different abx and he comes back with Augmentin. I started another thread about my husband's CPAP as a culprit. Just trying to think outside the box--maybe not so outside the box. My husband is going to the doc today with our son and is asking for Zith for the whole fam-damily! For a month. Any CPAP in your life? Dawn

For those who don't use one, a CPAP device is a medical machine prescribed for trx of sleep apnea. The person wears a mask that is attached to this machine. I got a sick feeling when I laid down and "CPAP" (my husband's) popped in my head as a possible culprit to our family's strep factory. We're thinking. Is this device/mask/hose/filter/unit interior harboring & recirculating the bacteria. My husband just ordered new filters/hospital disinfectant/hose/ mask. He has used a CPAP for years. We are searching. Any other CPAP users out there with strep problems?? Dawn

Hi all- Thanks for all the concern. We had one VERY upset boy when he learned we had decided to not go to Chicago. And he had been Soo worked up about GOING!! Ha I was disappointed, too. OK WorriedDad--I just got an email back from Dr. K and he said that Augmentin for our dd15 and we all take Augmentin simultaneously! ARGGGH!!! Didn't we already do this,Doc?? Strep C & G will cause ADB to increase w/o much of an ASO rise. GAS & skin will do the same. The latter is what we are going to look into. Our dd15 started having a pretty good flair with the adol pandas symptoms. Now I am putting some other symptom with Evan & my husband. VAGUE. Those two are going to the GP tomorrow and will try to get something besides Augmentin. (Zith..) No dogs....Hmmm wait a minute. She goes to the youth pastor's house for Bible study each week. And on other occasions. New dog w/n the last month. So. How do you check a dog?? Hmm I'll keep you posted on this. I really didn't need to add anything to our saga!! Thanks for your concern. Dawn

Dear Worried Dad & All-- We take the cake for a situation like what this thread is about. We have Dr. K saying "*^$%$#^^*, I have NEVER seen anything like this before!!" Dr. T said about the same thing with this recent line-up of strep antibody results. Are you ready?? We had the family all run in Dec. at my INSISTENCE despite negative strep cultures. Hold on to your pants--I think we need a prize!!! Our PANDAS son started spiraling 2 1/2 months post IVIG after encouraging improvement. We postponed his second one scheduled for this week, untill we unravel this. Our dd15 was dxed by Dr, K in Dec when symptoms of adol PANDAS really came to a head. He put her on HD Augmentin. Total abx for about 6 weeks. Symptoms started creeping & became apparent that "we're backkkk!!" Dr. K said run the titers on her. I said do the whole family. WEeee! (These were run at Mayo) DS11 pandas IVIG oct09 hd Augmentin since then pre IVIG 780/1360 post IVIG 2 1/2mo 378/580 5 1/2mo post IVIG 378/5440!! DD15 adol pandas dx dec 09 6 weeks abx dec09 752/5400 3/09 752/7800 dd13 dec 09 neg/177 3/09 neg/960 dh dec09 189/1920 3/09 189/7860 myself dec09 756/1920 3/09 752/5440 We are at a loss. Our GP has a call into some specialists. Not sure what will be next. We were all on Augmentin HD for a month in Dec. Dr. K seemed to think that would do it. Not sure of his thoughts now. He's not saying much! I think Dr. K has had some situations like Worried Dad and ours recently. I hope something is being gleaned. In both instances we have had to push for titer checks in teh absence of positive cultures and we had an IVIG probably fail because we returned our kid to a strep factory. Dawn PS--No, I didn't miss a decimal point in those numbers. You are welcome to throw out ideas, b/c we certainly are baffling the docs. I've hesitated posting this, thinking you all would think I was nuts!!!

Ginger- Hi. First, I'm sorry I haven't touched base with you like I said I would. It has been very topsy-turvy for us. We were suppose to go to Chicago for our second IVIG and had to postpone. We also had to pull our son out of school. Both are stories each their own. I haven't forgotten about you! FLORASTOR by all means. It works differently than the "good bacteria". It is a good yeast and prevents the bad yeast from taking over. It helps maintain good gut health. Dr. K even recommended it. I have had it recommended to me by counselors. Google to learn more. Can be taken at the same time as an abx. Buy on line for much better deals. Frankly, I have yet to find it in DM area, but I am certain it would be full retail. Campbell's Nutrition stores in the area have a very good line up of other probiotics. I'd looked for one with a variety of strains and a few billion--depending on your child's age. Hope this helps. -Dawn

I will PM you with what our costs were with Dr. K Dawn

We have never had an insurance issue with having the titers checked for the entire family. I don't know how they could with the results we have gotten!! We are thinking some skin issues with dh & myself may actually be strep of some sort. Off to a dermatologist, I think. Trying to get some insight on PANDAS implications, etc. Dawn

These were sent to Mayo because the local lab in Des Moines maxes out at >1360. I will PM you. Thanks! Dawn

Hi all! I have emails into Dr. K and Dr. C regarding these results. Go ahead and chime in. Ds11 PANDAS (in hindsight, an early onset case) IVIG#1 Oct 09, IVIG #2 scheduled for This Wed/Thurs w/ Dr. K. Dd15 PANDAS adol variant dx Dec09 Now for the titer results. I insisted that the ASO/ADB titers be taken on each family member back in Dec. despite negative throat cultures. Our son started taking high dose Augmentin post IVIG #1 and has been on that since Oct. The other four of us had a month of high dose Augmentin starting in Dec. Actually, dd15 had about 6 weeks. Help me out doc & others: pandasDS11: preIVIG#1: 780/1360 12/09: 378/580 3/09: 378/5440 pandasDD15 12/09: 752/5400 3/09: 756/ (probably sent to the moon it's so high--it was the first sent in! Pending, I'm told.) DD13 12/09: neg/188 3/09: neg/960 Mom 12/09: 756/1920 3/09: 756/5440 (has psoriasis. Could this be the problem??) Dad 12/09: 189/1920 3/09: 189/5440 DD15 symptoms went away on abx. They have started to creep back in. Dr. K put her back on Augmentin. I am aware the ADB lags the ASO in rise & fall. Will we be bringing our son back home to a strep factory again? Does our son's results indicate that Augmentin is not cutting it w/ this strain of strep?? I need insight. Dawn

Chiming in here w/o thoroughly reading all the posts, so forgive me if missed something. Read Dr. K's website re adolescent/adult variant of PANDAS. The stomach stuff all goes with this. My dd15 was dx'ed in Dec with this. Her stomach stuff manifested with what would appear as overactive stomach, stomach ached badly at times. Then she got to where she was afraid she would throwup in public (never did). Had other anxiety issues. AntiDNase B was 5400 in Dec. All is indicative of PANDAS at this age. A month of high dose Augmentin pretty much took care of the symptoms. Unfortunately, she has started having symptoms again. Augmentin again, for now, per Dr. K. Just chiming in. Dawn

I believe we continued the abx he was on while on the steroid burst. Only the psych drugs were removed. How is your boy holding off the medications? Any closer to IVIG? Our second IVIG is scheduled for 17/18. I am totally perplexed by recent titer results on the family. We have anti DNase B's in the 5000-7000. Yeah, all those 0's are correct. Dr.K & Dr.C each have an email in their inboxes. Sorry, jumped topics. Dawn