nicklemama

What lab did the actual work? My ped's office drew the blood and sent it off and had the results also faxed to Dr T. He emailed me the results as an attachment. Here are DS's results IGG 1 662mg/dL (292-815)range IGG 2 293 mg/dL (83-513) IGG 3 57 mg/dL (8-111) IGG 4 129 mg/dL (1-121) High

Yes, we did phone consult w/ Dr T and I took his recommendations to our pediatrician. She wasn't buying into PANDAS and wasn't much help but when she heard he'd given DS a tentative diagnosis based on clinical symptoms, she agreed to the recommendations and had his blood drawn. We'll see how helpful she is now that the titers and other values are normal. Hopefully, she'll look at the results we're getting from abx. Cindy

Just Biaxin 250mg 2x day, plus the first three days, Motrin 200mg 3x day. We have a neurology appt on Monday w/ a local dr who has supposedly treated PANDAS kids and believes in it. Now, the question remains if she will be convinced by a non textbook case, as in ASO and Dnase titers negative and never had throat swab when sick. We shall see. Cindy

DS has never had a known strep infection because he was never tested whenever we took him to the ped's when he was sick. He's rarely sick. Usually when he gets sick during the winter, it turns to a bad ear infection. He doesn't even tell us his ear is bothering until its nearly bursting, but it always follows an illness w/ nasal congestion, chest congestion and cough. Never has complained of sore throat. When he got sick last fall, I got sick after he did and my throat hurt so bad I was taking Motrin for it. Stupid me, I never even considered it might have been strep. DS never complained of sore throat even though I asked him daily. Cindy

I could have written your post, except my DS6 has a very low ferritin level (not sure what that has to do w/ PANDAS)and negative Western Blot. We are consulting w/ Dr T. My DS started 250mg biaxin 21 days ago before I had blood drawn for the blood testing. The day before I consulted w/ Dr T, I took my DS to the barber for his regular haircut that we've never, ever had a problem with before, since his first haircut at 18months. He got up in the chair and tic'd so badly, blinking eyes and clearing throat, it was pitiful to watch. He became upset when the barber pulled his hair upward to cut it, he started to cry and asked me to come hold his hand. I stood there, dodging the barber, holding DS's hand so he could get his hair cut and watched him tic so badly. The barber asked me if he was sick and what was wrong w/ him. I wanted to cry but that experience made me determined to get someone to listen to me about PANDAS. That's when I called and emailed Dr T. He started biaxin 21 days ago. Within a few days, the tics started to lessen in intensity and frequency. In a weeks time, we realized he had not had any angry outbursts. Then we started noticing how much happier and cheerful he was. He is still ticcing. Still has ocd's, fears, etc... but he is better. Last night, we took him to dinner at a nice place (real tablecloths, lol). He used please and thank you, was very sociable, happy, sat STILL in his chair at dinner, occupied himself w/ the crayons and activity/coloring page, ate EVERY bite of his food, plus a hot fudge sunday and we had the most pleasant dinner we've had in a VERY long time. Dh and I could actually carry on a conversation w/out interruption and w/out having to ask DS to get back in his chair, stop fidgeting, get out from under the table, show manners, etc..... Based on our experience, I would highly recommend starting the antibiotics. What do you have to lose? The Western Blot was sent to a lab called ARUP in Salt Lake City. I suppose the local lab here in MI that did all the other levels, sent it there. Wanted to add, my DS is not sick. He hasn't been sick since Feb when he had a bad ear infection and his eardrum was close to bursting. He first got sick last fall after FluMist and then a subsequent unknown infection when all this started. He got better and Dec, Jan and Feb he was back to nearly normal. Feb ear infection and its been all downhill since, even though the ear infection was cleared and he hasn't been sick since. Cindy

Tampicc- Are you sure we aren't sharing the same son? I could have written your post nearly word for word, w/ just a few minor variations. My DS6 has and had many ocd's that I did not recognize. I thought he was anxious. He hoards/collects the boxes that Dove bars come in. I have to secretly throw those away. He cannot leave the crayons and coloring paper that are given out at restaurants. He might need them. He's got a million crayons already. He argues or corrects our speech/word usage, as well. We were recently told he was Aspergers and this was given as an example as being inappropriate. He too makes up his own game rules. He fixes games so he will win. He walks on lines, jumps over cracks, steps on certain tiles at the mall, walks on top of any short retaining type wall. Sometimes doesn't want to leave the house. Sometimes has separation anxiety from me. When this all first started, it was severe. DS is also ticcing now. I recently bought Tamar Chansksy OCD book and realized reading it that DS has had a few tics for many, many months now. He was wiping his lips earlier this year to the point of chapping/cracking them and wiping his chin on his shoulder. I thought he was too lazy to use a napkin. Turns out its tics. A couple of weeks ago, he began eye blinking and throat clearing which was unmistakable. I love reading these details about other kids because its more reassuring to me when I am doubting myself and what is really going on w/ him. His titers are normal. We are drawing blood on Mon for the Cunningham test. Cindy

Great news for you. My dh's open enrollment is now. Closes on the 16th. We, too, are switching from an HMO to a standard health coverage. Its a pretty high deductible, $1400 pp, family ded. of $2400 but its monthly premium is $100 less than the HMO, so it almost covers the $1400 deductible I'm sure my DS is going to use next year. The motivating factor for us is not having to get referrals from our primary care docs and coverage if we choose to go out of state. My Dh stated yesterday that HMO's are for healthy people/families, which no longer applies to us. Cindy

Maybe Dr T is out of town. My DS6 weighs 53lbs and Dr T recommended 250mg biaxin, which is what he's been on for 20 days now. Cindy

Be very careful off SSRI's. Our DS was put on Celexa w/ disasterous results. Cindy

I am sitting in your same shoes right now. DS's titers were all normal. However, we are consulting w/ Dr T, one of the PANDAS 'experts' and he says normal bloodwork doesn't rule it out. My DS started biaxin two weeks ago and we've seen positive results in his mood, frustration, tics and ocd's. Hang in there. Consider consulting one of the four experts. Btw, my DS has never tested positive for strep. He was never previously tested. YOu might go to page two or three on this forum. I just asked this same question last week and got great answers. Cindy

Tantrums- My son is also presenting w/ Aspergers. Funny how it just suddenly popped up at age 6 for him, as well. I see you've gotten your CamKinase back and it looks high. What were your son's titers? My son's have come back completely normal. We are still waiting on the test kit from Dr Cunningham. Its been several weeks now. Cindy

The knowledge of my son's intelligence is what keeps me going when I am despairing over how much could he possibly be learning at school when he's got tics and worries and cloudy thoughts and distraction. How on earth could he possibly learn anything? He's in first grade this year and is reading on a third grade level. Math skills the same. He is doing the kindy work and does well. Right now, we have the luxury of knowing if he doesn't learn a thing until we get this under some kind of control, at least he won't be behind when 1st grade is over. The academics are just not that important to us in the moment. We adopted our son, so I can take no credit for his gifts. He's not a genius, but he is working at a much higher level than most of his peers. He was not quirky and weird before all this started. I don't know where we'd be if I worked. I've been a stay at home mom since we adopted him and right now, my life is helping my son. I don't have time for much else, except to come here or search the internet for information. Emerson, I have a lot of admiration for you being so responsible for your own health and well being. Hang in there. Cindy

Our DS is gifted. We had him tested last fall as part of a psychological evaluation when all this started and we were searching for answers. Cindy

Wow, this is a lot to think about. We are in metro Detroit, not the UP. There is another new person here from the UP. We are not in a high lyme area and I have never known my DS6 to have a tick bite. He just tested negative for lyme using Western Blot that Dr T ordered. We have cats. They are indoors only and have never had a tick or flea that I am aware of. However, my DS sat on one of our cats when he was 3 and she bit him. It did not puncture the skin but he had scratches from her two upper canines where he pulled his hand from her mouth quickly. The soles of the feet pain comes and goes. Almost always near bedtime. Started in Jan of this year. I can't remember when the night sweats started. It comes and goes. His head is always drenched like he's just gotten out of the shower. He has always been very active and athletic. Played soccer at three and could run around like crazy, even last fall (09). This spring, he would quickly tire out from running in soccer and would be sweating like crazy, even though the other kids were not. This fall, I could not get him to play. I'm going to mention all this to Dr T. As a side note, Dh's insurance election just happens to be coming up in Nov. We are switching out of our HMO to a standard BCBS policy so I don't have to go begging to the ped for referrals and I can switch dr's if I like. My dh said last night that HMO stands for health maintainence, as in, healthy and staying that way and we are not a family of healthy people anymore so we've got to get out of it. I don't even know where I'd be w/out this forum. Cindy

Our DS6 woke up at 10:30 last night, after falling asleep at 9pm and his hair was literally sopping wet. I didn't think to check his pj's. This is not the first occurance. He's been doing this off and on for a while now. He's also complaining of the bottoms of his feet hurting, usually near bedtime, off and on. Dh thinks its growing pains. For the last year or so, our DS has not been very heat tolerant. His face gets really red and sweat literally drips from his head. Any ideas? PANDAS or not? Cindy

My DS6 was also perfectly fine until last fall when he was 5 when we believe he had his first PANDAS symptoms of raging, ocds, severe separation anxiety. He had an exacerbation in March. Sometime over the insuing months, he began to display autistic behaviors and had a very transient head turning tic that disappeared by the end of the summer. A couple of weeks ago, he was diagnosed Aspergers the same day as he began throat clearing and eye blinking tics. This boy was not on the spectrum several months ago. He has only tentatively been diagnosed w/ PANDAS. Blood work came back normal this week but Dr still feels its PANDAS and he's been on biaxin for 12 days. Cindy

Thank you all. You are making me feel better and more inclined to think I'm still on the right track. Dr T made a list of bloodwork he wanted done. I took it to my ped, who ordered it from the lab her clinic uses. Most of the tests were performed at the Detroit Medical Center University labs. The Lyme Western Blot was performed at ARUP Labs in Salt Lake City. The worst part is I'm not sure how much cooperation the ped will give now that the labs have all come back normal. I hope she hangs w/ us. Dr T said we'd do more labs in 30 days and stay on the biaxin. I haven't spoken to him yet. I'm so afraid he'll have a meltdown at school. Actually, we've seen no anger flashes since starting biaxin. Knock on wood. Cindy

Our son has rarely been sick. He had a couple of ear infections as a baby, then went two years w/out seeing his ped, except for well child checks, because he did not get sick. He had an ear infection in Jan 08, when he was four. He was given amoxicillan and had a terrible reaction to it......tantruming, oppositional. So, after about 5 or 6 days of amoxi, it was discontinued and the ped said his ear infection would get better. It did. Next year in Jan 09, age 5, another ear infection. I can't remember exactly what he was given, Omnicef I think, ear infection went away. All was well until this past Jan 10, age 6, yet another ear infection that Omnicef cleared no problems. This occurred after the FluMist in Oct 09, but during the time when he had returned to near normal (Dec 09-Mar 10). He was diagosed w/ seasonal allergies when he was 5 (snores, wakes up congested in the morning then it all clears out) and given Flonase. Another bad reaction.....tantrums, opposition until we stopped it. That is really his unremarkable medical history. I don't even need to look at a copy of it. Its that simple and short. Never previously tested for strep. I can say that two weeks after the disasterous FluMist reaction, he got sick again w/ 103 fever, kept to 101 w/ Motrin, for a few days but seemed to recover from the illness quickly, except for the ever increasing behaviors, anxiety and ocd. Then, I got what seemed to be the same illness and I remember telling my dh that I hoped our DS6 throat didn't hurt as bad as mine was hurting. I was taking Motrin for it. It never occurred to me that he or I might have had strep. He recovered much more quickly than I did. He has not had a steroid burst. After the Flonase, I'm scared to do it, although it has not been suggested yet. He's never been bitten by a tick that I am aware. Sometime this past year (can't remember exactly when), dh noticed DS6 had a rash on his behind when he was bathing him and had me look at it. He had a red rash in the "crack of his butt" like a diaper rash. It puzzled us but I put Aquaphor on it and it eventually went away. I just can't remember how long it lasted. Its seemed so innocuous to us. We thought he might have not wiped well. I only thought of it again when I read something on here about perianal strep. Was it? We will never know. I requested a Cunningham kit nearly 2 wks ago. I was told the consent form was under revision and they wouldn't be mailing any out until the university signed off on it. I will have the Cunningham test done as soon as I receive the kit. Its so ironic that I wanted that bloodwork to be abnormal. I hardly know which direction to turn. We are pursuing the Aspergers w/ the school so we can get some accommodations and services into place at school. He's actually doing pretty well in school. Academically, he's a couple grade levels ahead in math and reading. Its a good thing, since his behaviors of lining up crayons, have some trouble transitioning to other tasks, being a little overactive, wanting to answer all the questions, needing a lot of the teachers approval and attention and somewhat not getting along w/ the boys in his class have to be causing him loss of attention, not to mention the tics of throat clearing and eye blinking he developed on Oct 12, his anxiety and other ocds. His ocd's are not really inpairing his ability to function, they just make him seem weird and are probably responsible for his transitioning difficulties. He's got to finish what he's working on before he can move on. He was not like this in kindergarten last yr. I need to sit down and write a book. Oh, and he 'hops' from time to time like Sammy on the Mystery Diagnosis episode. That is what woke us up to PANDAS. The only thing I know is the improvement we've seen in the 11 days since we started biaxin. If you are still reading this long message, I do thank you and thank everyone for your replies and suggestions. Oh, and to muck up the waters even more, our DS was adopted at 6 months of age from Russia. Everyone wants to blame his current issues on that fact, never mind he has developed normally until last year. Cindy

I am rather surprised. Stunned really. Got the results of all the lab work done. IgG and subclasses normal. IgA normal. IgM normal. Lyme Western Blot normal. Mycoplasma IgM AB normal. anti strep DNaseB normal. Antistreptolysin O normal. Mycoplasma IgG normal. He shows absolutely no signs of ever having had a strep or mycoplasma infection. Two things outside normal. IgG subclass 4 is a little high (probably allergies) and ferritin is low (needs more iron in diet). My son who seemed to us, perfectly normal, changed overnight after the FluMist last Oct, when he was 5.5yo. Has presenting symptoms of PANDAS. Had a "remission" in Dec-Feb. Started it all back up again in Mar. Saw head turning tic for the first time in the late spring early summer. Went away. Diagnosed Aspergers two weeks ago, along w/ sudden tics of throat clearing and eye blinking beginning. Started biaxin on Oct 18 (11 days ago). We've seen a decrease in the intensity and frequency of the tics and an absence of anger, plus a lifting of his mood to a happier little boy. I just knew he had PANDAS. Dr T says it still isn't ruled out. Supposed to phone him to talk. Wise PANDAS parents who've seen it all here. Just tell me if I'm on the wrong road here so we can figure out what is going on w/ our son or just accept that he is Aspergers, put him on an antipsychotic and move on. Thank you Cindy

My husband and I saw the rerun of the original on Mystery Diagnosis about 6 weeks ago on a Sun night. We turned to each other and said "This is what DS6 has". I began to pursue it immediately. I had DS in to his ped the next morning. Unfortunately, she did not run the titers and was very skeptical. I am waiting on the results of the labs ran a week ago, at the request of Dr T, which his ped had no problem running after seeing how different DS was last week vs 6 wks ago. He began an exacerbation and was ticcing for the very first time. Our DS is not as bad as Sammy was but he has the occasional 'hop', in addition to many other symptoms. Cindy

First thing I thought of was PANDAS. I am very new to this but I am starting to believe this is much more widespread and undiagnosed. My DS6 is a perfect example. He was seemingly perfectly 'normal' developing until last year when he received the FluMist. Rarely sick, except for an ear infection each winter. Now, he fits the DSM for Aspergers (except for the age 3 or before requirement). If this had happened after a vaccination when he was a toddler, like happens to many kids diagnosed autistic, we might have never known he had PANDAS. Instead, it happened well after we 'knew' him and his development. Cindy

Never again. The FluMist in Oct last yr set off PANDAS in my DS6. Dr T said no more vaccinations ever for DS, except in extreme circumstances. Cindy

Thank you all for the information. The pharmacist just called me and tomorrow's pharmacist is going to try and get this done or call Dr T and get a new prescription. Not only do they not want to refill the prescription because of the timing thing but they are saying the dosage is too high for a 6yo child. Its 250mg 2x a day. Cindy

Does it never end? DS was prescribed biaxin by Dr T last Sat, for 10 days, 2 refills. I called in the refill this morning and went to pick it up this afternoon. Our insurance company has denied it, saying something like its too soon and doesn't meet some kind of guidelines. DS is supposed to be taking this for 30 days straight. We have enought to last until his Tues pm dose. The pharmacist told me she was a new pharmacist and not really experienced in getting the insurance to cover it. She's going to keep working on it today and if not successful, hand it off to the experienced pharmacist tomorrow to try and get this filled. Initially, I thought I'd just pay for it myself. How much could a 10 day supply of generic biaxin be? $86!!!!!!! If you have experience or insight on how to get this filled w/ my prescription insurance, I'm all ears. In the past week, I've paid out of pocket for a neuropsychological evaluation and a consult w/ Dr T. I will get my DS the biaxin but I'd sure prefer my insurance to pay for it, since I do pay for my insurance. Thanks. Cindy