MMC

Meg's Mom...ds does have a good response to anti-inflammatories, prednisone helped a lot. And I give him children's ibuprofen every morning to help during school. Dd did not have much response to prednisone, but her symptoms are milder anyway, (lately have ramped up as posted, so would be interesting to see what pred would do now). Phone consult w/ Dr. L is a good idea, might just try to arrange this if she is still doing them. PANDAS_Denmark...thanks for the post from Dr. T. I was able to find more posts on his website by searching on zithromax. Lori Ann...we are near Raleigh. Let me know or PM me the name of the doctors you see in Charlotte that are willing to prescribe abx. My wife has family in Charlotte, and we are seeing Dr. Corbier at his Concord office, but don't think he is big on abx. kimballot...yes, I have watched all of Dr.mdk's videos on PANDAS and am most impressed with Dr Schulman. She is in Brooklyn, NY. If she were nearer to NC, I would make an appt asap. I just looked at the PANDAS protocol for using zithromax on the website...great info, thanks, I hadn't seen that. Ds has been on high strength Augmentin for 5 weeks and it had no effect that we could tell. I'm ready to try high strength, Zithro for 4 months or so, (for both ds and dd). I have heard it can lead to hearing damage, so maybe back to pen after 4 months EAMom...yes, this is from Dr L, 250mg once a day. I have recently learned about pen's short half-life and this concerns me. I make sure it is taken in the morning, so there is protection during school. But, I know all it takes is a late trip to the grocery store, touching a cart... Thanks everyone!

Thanks fixit. Yes, it would be best to get her off the med, but it has helped tremendously in past years. Her dosage was increased this time, so we are hoping a decrease will help...calling doc today. She says she just can't focus in school without it. Good idea on the diet. We are focusing on diet for ds but have not tried with dd...we probably should. We are just really curious to see what zithro would do...she has never been on it.

I recently posted about Mycoplasma in our ds12. http://www.latitudes.org/forums/index.php?showtopic=9457&st=0&p=79382&hl=mycoplasma&fromsearch=1entry79382 He has finished the zithromax (250mg for 2 weeks) and is back on 250mg pen vk daily. He started school 8/25 and is doing relatively well. He still has plenty of tics but is in good spirits and has been able to complete homework. It is hard to judge if the zithro has helped or not, but I remember many here have seen good results after being on zithro long term. And I read this article yesterday and watched this video... http://intramural.nimh.nih.gov/pdn/pubs/pub-9.pdf (article compared zithro and pen and pointed to pen as a "safer" prophylax) http://www.thedoctorsvideos.com/video/14805/PANDAS--Azithromycin--Zithromax If we can get a doctor to prescribe, would lke to try zithro for several months for ds12 and dd14 (has had PANDAS for 9 yrs). Dd is also on pen vk, 500mg...she weighs 115 lbs. Ds weighs 75 lbs. Dd is struggling b/c of increased tics from her ADD med and stress of school and possible virus. She had a good summer while off ADD med, but the combination of school and the med (vyvanse) has us worried...are calling doc today to get a new Rx, reducing the dosage. Looking for suggestions on dosage, duration (4 mos, 6 mos?) and any comments or experience with zithro. Not sure who we can get to prescribe this. Our current neurologist hasn't leaned towards antibiotics. We get the Pen vk from Dr Latimer, but we are in NC and it is hard (and expensive) to go to Bethesda. Thanks in advance for any input!

We had our ds12 tested for lyme and mycoplasma pneumoniae. Lyme was negative. Mycoplasma was positive...Ig Abs 357, with test showing normal as 0-99. The IgM test was negative. Doctor started him on zithromax, 250mg a day for 2 weeks. Has been on it 3 days now. He hasn't felt well at all last 2 days...weird stuff, no energy, can't sleep well, heart palpatations. Could this be herxing? He is normally just on penvk 250 a day, to prevent strep. Twice, in the past, he has been taken Augmentin 1200mg a day for 4 weeks...but, this did not eradicate any symptoms. He mainly deals with tics. We just can't seem to get rid of them. Were hoping for more improvement this summer, school starts in 2 weeks. We know he is immune deficient, tested positive for hypogammaglobulinemia. The doctor is explaining a lot of his issues are also PITAND related. Has him on various supplements, including glutathione (using expensive liquid). He has had plasmapheresis (January) and one round of IVIG in April. Insurance has denied any further IVIG at this time. We will re-test for mycoplasma in 3 weeks or so. If not gone, will ask for more abx. We just wonder if there are other co-infections should we be testing for. I have seen several mentioned on the forum. It seems you have to request your own testing, since the doctors don't necessarily do it. It was my idea to test for lyme and mycoplasma. I learned about these from this forum, of course. Appreciate any suggestions...thanks.

So glad to see this is "Official"...was waiting for this! Definitely sending out a big thank you to all who worked so hard on getting this started and communicating the processes on the forum...Thank You!!!!

From another PANDAS dad, thank you very much! This Father's Day IS better than last. Son's symptoms are not as bad, although he still has a long way to go. Tics still bother him a lot. But OCD and separation anxiety is all but gone, thanks to PEX and one IVIG. I wish him 100% healing and is so hard when it is taking so long to get there. Daughter also still struggles with tics and OCD, especially when stressed. But school is out now...so better. But I am very thankful where we are. Please send some prayers our way because tomorrow we see their neurologist, not Latimer of course, but one who is more local to Raleigh area. BCBS insurance is driving us crazy, as they have denied IVIG for his second treatment. So, we are not sure what other options we have at this point, other than to appeal insurance. Thank you again for the Father's Day note.

I tried doing this, but could not figure out how to attach the photo. I have it on my desktop as a .jpg file, no problem. The Pepsi site allows you to browse to it...but there is no "attach" button. Not sure how to get the pic loaded on the site...and it would not take my entry b/c it was missing. ??

So...if I understand correctly, we CANNOT vote by proxy?

We currently have 11, including our own. There are others still voting, but are probably inconsistent and I will try to get their logins to vote by proxy.

Hello Kay...the tic is like a quick clenching of the ab muscle and a release, lasting a split second. Almost like someone doing a really quick ab crunch. His entire body will move when he does it. Happens hundreds of times during the day, especially when laying idle, watching TV. So, it is not an inner cramping, it is more like an ab muscle tic. He's had this tic for at least a year, I would say.

Yes, I believe it could be a tic. Our 11 yr old son has had several strange tics. The lip biting tic was a strange one...could not stop biting/sucking his lip until it had a sore. It went away after about 2 weeks, thankfullly. He now has a toe dragging tic when he walks. After about 5 steps, he will tap his foot and drag his toes on the ground. But, doesn't slow him down much. He even did it barefooted around a swimming pool this past weekend until his toes were scraped and red. He has had other toe tics, hand and finger rubbing tics until he has made a callous. Has had an abdominal tic for over a year, head and neck jerking tics are common also...back tics also. All drive him and us crazy. Any muscle that can move in the body can become a repetitive tic...it's whatever the brain decides to "pick on". Some last a long time, some go away after a couple of weeks. He has even developed new tics after one round of IVIG. We are waiting on the doctor to persuade insurance to approve another treatment.

Thanks for writing this, Buster. I was diagnosed with Sydenham's as a child...the doctors at Duke knew it was from strep, and this was back in 1972. I just can't understand why docs do not connect PANDAS and strep these days and take it and treat it seriously. But, with articles like this, parents will be empowered with knowledge and docs, at least some of them, will become more aware and give respect to this illness. Thank you.

Yes, we are voting every day, and I am recruiting more and more at work each day and reminding family and friends as much as possible.

I wrote this poem on behalf of our 11 year old son for his mother. He penned it on paper and gave it to her today for Mother's Day. They said we should share it on the forum...so here it is. Sorry, it is a little long. It is sort of a narrative poem, detailing events just before his PANDAS started. And highlights how he has depended on his mother to get him through much of this. She is a very special Mom, and am so glad she is the mother of my children, especially in light of all we have gone through this past year. My Mother My Comfort My mother My comfort My blessed comfort you are When I need you, you're never far You know Mom, this year has been hard But you are there, my steadfast guard I need you in times like no other And I am thankful to have you as mother You know Mom, I have been brave But to this illness, I am a slave Nurses, needles, machines and bags "Mama take me home", for I am sad Last night, I had a dream of a man with a time machine This tall, skinny man said with pride You can choose one passenger for this ride So I chose my father's bride Mom, where should we go? She began to ponder and wonder...and said Perhaps we should go far, far away To receive blessings of an ancient day We will search and search for Him Closer, closer, touch His cloak The touch will heal Enjoy the relief, the peace, and be still No...I do not believe this is meant to be For only in the future we will see Perfect healing of mind, body and soul Only to happen when we are old Perhaps we will travel back several days Over 365, before all the craze To a time of jubilation Before all the frustration Remember the trip son? Just you and I on the road We planned it for so long To see Third Day sing their songs "Yes", Mom I remember it well We met the band, then said farewell So much joy from beginning to end All before the strep set in And then life changed for me Mommy, I did not understand Why I could not keep still And all the strange things I would feel But your comfort for me was beyond measure This I will always treasure You held me close, I depended on you When dad did not know what to do Oh, I know he was there too Calling doctors left and right But, you Mom you Were there with me into the night When I could not, could not go to sleep When the PANDAS would run so deep Their teeth and claws biting, scratching with all their gall Those black and white monsters, I hate them all I'm feeling sleepy now Dear mother by my side To you, again I owe My comfort, my peace, and off to sleep I go Another morning, another day to dread No...my mother is here I said I will be brave, I will go to school Mom is nearby, she will stop the cruel You taught me Mom, we must move on To face each day, each new dawn Of one thing I am assured With you by my side, I can endure And I am thankful on this Mother's Day That I can say I'm feeling some better now And to this lady, I bow My Mother, my comfort My blessed comfort

Sorry to hear this, Mom MD. We also have BCBS of NC as you know and they covered our first IVIG 3 weeks ago, (as well as PEX back in Jan). We will be scheduling a second one soon through Dr C at CMC-Northeast. Will see what happens. I'm hoping the immune deficiency our son has will be an acceptable code for them. PM me if you learn any tricks with BCBSNC... hope it all works out for you.

Our 11 yr old son had IVIG last week, 4/13 and 4/14. The 2nd day was rough and they stopped the treatment (1 gm/k) half way thru. He had fever, nauseau, and headache... symptoms were so bad they kept him overnight for observation. While in the hospital that night he woke up in a terror-like nightmare state...heart rate was up to around 200. I was not there, but my wife gave me all the details of course. He eventually went back to sleep, then had two more similiar episodes, although not as severe. Good thing is, he remembered none of it. All this would be a memory in the past, except he had one of these episodes last night (1 week after IVIG). I saw it this time...his eyes were huge and he had a terror gaze like somoene was coming at him with knife. Also made a lot of facial contortions, really strange looking...heart rate up high. It last about 4 minutes, and went back to sleep and thankfully did not have another one. Does not remember it. While he was in the hospital last week, they did an eeg on him. Doctor did not note anything too abornmal, but did say there was one blip that he could not explain. My wife called him back today to get his opinion. Not sure if this is the IVIG doing this or what. At night, he takes all regular medication he has been on for a while...0.1 clonidine, 25 mg amitryptiline (for IBS), sometimes benadryl (had some last night) and also was on tylenol for the low grade fever. He is better today, fever is gone. We understand the fever and side effects from the IVIG but not the night terrors.

still here. Dr L. tried to get IVIG for both kids, but insurance denied back in December. Insurance approved plasmapheresis for son (go figure)... did this at Georgetown end of January, have seen about 25% improvement, better than nothing but still a long way to go. Dr L. had referred us to immunologist in NC, so we visited her this year and she found more immune deficiency evidence...she referred us to local neurologist who believes in PANDAS and treats with IVIG. IVIG was approved by insurance this time and son completed two treatments last week. Did 1mg/kg for two days, although had to stop half way thru last bag b/c of bad side-effects. We are hoping for more improvement...will eval in 4 to 6 weeks and do again if needed. We are still patients of Dr L's and get our abx thru her. Dr's in NC take insurance...very expensive to go to Bethesda and take both kids to Dr L. but we will go again if needed. Dr L. definitely took a lot of time with us and answered all our questions with compassion and got us on the right path...but we still have a ways to go.

It was about a year ago for our son as well. End of last March...started ticcing after strep throat 2 weeks prior. We knew what it was and were devastated. Just said a prayer for your son, that our Lord Jesus would provide healing to your child as only He can do. And provide guidance for the best treatment options and comfort for you in this difficult time of life.

Trg girl...I probably had some ADD, (no hyperactivity). I mainly had this with quantitative studies...ie math classes in middle and high school, and even college. I had to change my major in college b/c I couldn't handle the math or chemistry. I never tried ADD medication. Not sure if this was even around in the 70's and 80's. Maybe I was just a bad math student...but I just could not concentrate in class or while getting homework done. Was ok with general math and geometry, but forget algebra and higher math. My wife helps our kids with this subject, even today. My kids are actually good in math even with their PANDAS. But we have definitely seen our son struggle a lot with homework since getting PANDAS a year ago. He has to get it done early, or can be a disaster. Our daughter is on ADD medication and it helps greatly.

I've posted this before, so may be redundant to some. I was diagnosed with Sydenham's Chorea at age 7...but was really more like PANDAS, on the SC spectrum. Mostly tics, not much ocd. I outgrew most of my symptoms by age 15...about 75% I would say. By age 18, 90%. I'm 45 years old presently and estimate I'm 95% free of symptoms...just a few unnoticeable tics. I didn't have any treatment other than prophylactic antibiotics. Both my kids have PANDAS. Daughter is 14 and still has some tics, but are fairly mild. Is on ADD med, guessing her ADD is related to PANDAS. Son is 11, so we are looking forward to the future, and hope to do IVIG soon to help his system. So yes, be encouraged about the future. But be aware this stuff can be genetic...

Autoimmune issues certainly can be genetic. Both our kids have PANDAS. I was diagnosed with Sydenham's at age 7...was really more like PANDAS, but this diag was not around back then. Sister has always had minor tics since I can remember, and maybe some ocd. Her daughter has Crohns. Father had rheumatoid arthritis. Cousin has really bad rheumatoid arthritis. These are all autoimmune conditions. I'm already worried about potential issues with future grandchildren.

Our 11 year old son returned from Georgetown plasmapheresis treatment on 1/28. I was not there, my wife and her mother were with him...but I kept up with all the details. Everything went really well and we were very pleased with the staff at Georgetown. His consultation was last Monday at 11:00. They drew blood to get a baseline for proteins and calcium. These 2 elements were monitored over the next three days. If proteins are too low, they will choose to wait a day for another treatment. On Tuesday, he was sedated for about an hour while the central line was put in his femoral artery. After about 3 hours of recovery (around 3:00), they started the first treatment. The pheresis treatments take about 90 minutes. He did not have any reactions, all went well. They drew blood at 5:00 am the next morning and blood proteins were checked again. They were a little low, but were enough to do another treatment on Wednesday. All went well again. He said he could not feel anything during the treatment...was even trying to teach his mother how to play chess during the treatment! Drew blood again 4:00 am on the 28th...all good, had another treatment that morning. His central line was taken out around 2:30. They had to monitor him for 4 hours for bleeding...so, were not able to leave until 6:30 (in DC traffic)...got home around 11:15 Thursday evening. Getting the line taken out was the worse part my son said. And he has had to take it easy with his leg over the past few days...we're snowed in anyway (no sledding for him). His main issues are tics and chorea like movements, especially in the evenings. We already estimate a 50% reduction in tics since plasmapheresis. And his personality and sense of humor are back 100%. The treatments were definitely worth it...and we are hopeful his symptoms will decrease even more. We are a bit unsure what to do next...as parents have posted, may be best to keep him home for a while, (snow will close schools around here for next 2 or 3 days). He is on 250 mg penicillin a day, but nothing stronger. Will he need IVIG in the future? Not sure. Further note...we inquired into the type of "plasma" that is used at Georgetown...a pheresis nurse even gave my wife the literature that was with the plasma bag. It is called AlbuRx 5, "albumin (Human) 5% solution". So, from my understanding, it is 95% synthetic, 5% sterilized human albumin. The plasma that is spun out of the patient's blood is the same volume that goes in from the AlbuRx 5 solution...so it is an "exchange" of plasma, but is mostly synthetic.

I'm probably the parent that memom referred to. I was diagnosed with SC when I was 7. And, unfortunately both my kids have PANDAS or SC. Son's cam kinase score was 197%, which is starting in the SC range. Daughter's was 184%, more PANDAS. Thankfully, daughter's symptoms have been fairly mild over the years, but she is ADD, which may be related. As most have stated, the two are in the same spectrum, I believe. SC diagnosis has been around for a long time...after 10 days at Duke in 1972, this is what the doctors said I had. I had chorea like tics, but very little OCD. Son has had same issues, but tics are even worse, especially at night...he can't relax and go to sleep and has "melt-downs". I believe the two disorders are basically the same thing, but each child has different mainfestations. I was examined for heart issues at Duke and none were found. I asked our Pediatrician if we should have kids tested...he said no, b/c with the use of antibiotics, they don't see many heart issues from this any more. Still see issue in undeveloped countries, from what I have read. I believe that my kids and I have a genetic predisposition to PANDAS / SC and the resulting autoimmune affects the basal ganglia as opposed to the heart valve. (the use of Abx may certainly reduce the heart issue) But the resulting autoimmune problem still hits the brain. Even now, I wonder if my grandchildren will have this problem...hope and pray there will be better recognition and treatments by then. And by the way, I outgrew my SC symptoms mostly by the time I was around 15. I can tell I have some slight symptoms now, but nothing that would interrupt day to day life. BCBS denied IVIG for both kids (b/c they saw PANDAS on med recs). But son has been approved for pex for the week of Jan 25th at Georgetown. We hope this will reset his immune system, and by God's grace, he will not get strep again and we won't have to wait for him to "outgrow" it.

I was diagnosed with Sydenham's as a child, and was on monthly Bicillin injections for 10 years. That's at least 120 shots in the butt that really hurt. I wasn't given the option to stop...I was taken to the doctor the 1st of every month to get "my shot". I remember my mother paying the doctor in cash...$8, (small town doctor). Started at age 7 and ended shots at almost 18. Was then on oral pen VK for about 3 more years. I never got strep again, so it was effective. It wasn't meant as a treatment. I grew out of my SC (at least 95%) as I have posted on the forum before...had mainly tics, not much ocd. My "SC" was more like PANDAS, I believe. The shots are a great preventive, as compliance is 100%. But, I don't want to put my kids thru this, and pen doesn't hurt their stomachs. Both are on oral Pen VK, just starting back in September...no strep yet, hopefully this will prevent it. Latimer prefers Pen VK as a prophylactic.

Well...we thought we were set to have both kids get IVIG at Georgetown next week. But BCBS (of NC) reviewed it further and denied the treatments. They went back and forth, stating it was approved w/o review, then stating it needed review, and they then approved with approval #'s and everything...then upon further review, they denied it. This was prescribed by Dr Latimer. Her office worked very hard with insurance and she even spoke with their medical reviewer today and all they would say is we could appeal, but is presently denied. They really jerked us around this week...stating if this would have been done this year, there would have been no approval cert needed...but that changed as of Jan 1, 2010. We are not sure what to do at this point. We may start the appeal process. But, it is even discouraging to read the recent post "tics worse even after IVIG, no relief in sight!". Our kid's main issues are with tics...so not even sure if IVIG would help. Swedo's articles and Dr Latimer said this would help, at least some, so we were willing to try.