michele

Great news on the PANDAS exposure on national TV. I agree I hope it doesn't paint that there is a quick fix from antibiotics. (I don't think antibiotics alone would cure the PANDAS. That is not a realistic outcome. However I haven't read the book and maybe the use of antibiotics in super high doses is what fixed Sammy. Even Dr. Latimore spoke to that concern about these web boards at our appointment, she doesn't want the word out to be that antibiotics will correct anything because it is antibodies not actual strep that is the problem. She said she felt there would be a backlash after Cunningham's studies come out and the naysayers will despute. I will be interesting. I still say we need a national organization. Anyone here with a law background?

Thanks Buster and all of you for your support. Buster, did you do a 5 day burst? Then 10 days later she improved? Then there is still hope since we are only on day 21. Did you get the IVIG from Dr. K? His daily baseline is definately changed. That is why he now seems more ASD/anxiety daily when he was typical before inbetween. Really our Dr's have called it TS for sometime. Clev Clinic and University Hospital Cleve will not recognize or treat PANDAS. I did have a few Dr's early on at Akron Children's who thought it might be PANDAS and gave him antibiotics. I can not find any local Dr's to treat PANDAS. If I keep searching I am afraid they are about to call me munchausen. The last appointmen was scary. I got the impression the psych thought I was crazy and messing my kid up by putting him through all this. I was actually scared he may call social services. I hope to never see him again. Dr. Murphy in Florida thought it was PANDAS and she was right on in what to expect down the road, but she would not treat him across state lines with meds. The way she suggested meds and not IVIG makes me think they know this is life long. She suggested Tennex, and Clonidine and Ritalin. I wonder if that is what she still uses in these cases of ADHD, anxiety and tics? Has anyone seen her lately, her name seems to have disappeared here? We are on Abilify, Celexa and Clonidine. I wish we could start over on meds but it is tricky to do much like the boy in Against Medical Advice. Somedays I just wish he would wake up and be cleared and we could forever put this battle for searching for answers and Dr's behind us. Then he starts acting out in the first 30 minutes and I know it is not possible. Maybe he will be much better off the steroids. I have really hit a low lately. In the ASD book it says you go through grief after diagnosis and I feel like I am. Thanks again, Michele

I do think the TS is a risidual just like the anxiety. I would think the study at NIMH would do the brain study. Latimer said the drugs he was on should be fine with the steroids but she suggested getting him off Abilify because of possible side effects long term. We did consult with Dr. K maybe we could do it in person yet though. We did see two ped immunologists. Both gave the antibiotics. I asked them about IVIG and neither of them had used it for PANDAS. I could seek out a new one. How about those Dr's at Cleveland clinic that list it online with their names and then won't see patients. One immunologist I found in Toledo would do IVIG if a local Dr. whom she knew diagnosed it and prescribed it. When I asked about the name of a neuro Dr. whom she had done it before they said they weren't seeing patients anymore. I bet Dr. K would do it. Maybe Ohio State school of med. OH can't be this behind in med can they? Michele

I do think the TS is a risidual just like the anxiety. I would think the study at NIMH would do the brain study. Latimer said the drugs he was on should be fine with the steroids but she suggested getting him off Abilify because of possible side effects long term. We did consult with Dr. K maybe we could do it in person yet though. We did see two ped immunologists. Both gave the antibiotics. I asked them about IVIG and neither of them had used it for PANDAS. I could seek out a new one. How about those Dr's at Cleveland clinic that list it online with their names and then won't see patients. One immunologist I found in Toledo would do IVIG if a local Dr. whom she knew diagnosed it and prescribed it. When I asked about the name of a neuro Dr. whom she had done it before they said they weren't seeing patients anymore. I bet Dr. K would do it. Maybe Ohio State school of med. OH can't be this behind in med can they? Michele

I did do a phone consult last year. He wanted local Dr's to treat with steroids but none would. We have never been to see him in person. It seems everyone else here is getting results with steroids and doing IVIG or PEX and getting better after a couple epsiodes but six and a half years later we are in the same place. Maybe this is TS and ASD with immune sensitivity and anxiety and I just need to accept it , treat the symptoms and move on. If it was true PANDAS I guess Latimer would have been more on board. I really was praying for a positive response. Michele Michele Have you consulted with Dr K?

Buster or others who have done research, My son had strep at 13 months, afterwards a dramatic change and chorea and tics and then later OCD and tics with other exposures. So why would Latimer feel it may be TS or OCD? Doesn't this study prove that predisposition to autoimmune ( I have arthritis) and predisposition to anxiety disorders and mental illness( my husband's side) can be a precurser to PANDAS. He had positive Kinase 11 which were in the low PANDAS range. Why would she be confused to if it was PANDAS? He had a long history waxing and waning with illness for 7 years after illness. Now he isn't responding well to steroids, they seem to aggravate his symptoms, does this prove it is not PANDAS? Did you kids all do well with steroids and how long did it take? We are on day 21. Sometimes he seems easier, othertimes agitated, hyper and raged. The anxiety and tics are increased. The next question, what do we do now? I mean we meet every symptom of PANDAS. The longer it continues it seems to be going into ASD with tics and anxiety. If Latimer is the best to see, she was not convinced so what or who now? She sugested the OCD study at NIMH but it is alot , 11 visits in 6 months, possible placebo, and who knows about the drug side effects anyways? They want you stay on current meds and that is alot of meds for a young boy age 7. Just wondered if you had any opinions? Michele

Thanks guys. It was six hours each way. We are. in Canton, OH We made it our family trip to DC. I emailed Dr. Latimer about the azith. I spoke to them on the study a NIMH. Downfall is 11 visits in 6 months. Every two weeks the first two months then once a month. Then one group gets a placebo for 12 weeks the oher riluzole. Then after the 12 weeks everyone gets the meds for six months. It is all free however and you work with their psychiatrist and get a full work up including labs and EEG and EKG. I guess they have seen improvements for OCD. You have to have a prescribing Dr. at home on board. I don't know about that. Plus missing school and being goone that much with three kids at home. We will think on it.

I spoke to someone from NIMH who will call me tonight to get more info. Things went well with MRDD today and he did qualify based on his diagnosis. Also a behavioral therapist was there and she wants to come out to the house. She does validation emotional training for the whole family. She feels his disibilities involve executive functioning and an inability to express his emotions. Maybe there is hope yet! Yes I would love to try the Azith. I don't know if Latimer would prescribe it but I could email her. I did pay her $550 for a two hour visit and travel 12 hr to see her round trip! I know she wans to help him.

She did call me last night. Her messae box was full, I had sent three emails. She said if the steroids weren't working on day 19 it didn't look good. Sounded more OCD anxiety to her. She suggested we get him help ASAP NIMH OCD study with riluzule. http://patientinfo.nimh.nih.gov/ObsessiveC...iatric.aspx#174 He was in a rage again today just being obstinant because I am so mean. He is destroying his room by throwing toys at the walls and putting his finger in his bottom and wiping it on his carpet. Today I am taking him for an evaluation at MRDD in our county. Maybe they can have some suestions on services. For some reason he has become ODD and then is having encopresis. I seems so hard to believe. I don't know where my sweet little boy went and why he has gone. Dr. latimer said kids with OCD will act out. See if anyone here can figure this out. I don't know how we are going to rise out of this? Here are a few articles I found. http://patientinfo.nimh.nih.gov/ObsessiveC...iatric.aspx#174 http://www.mentalhelp.net/poc/view_doc.php...d=535&cn=37 Here is a new PANDAS article http://www.eurekalert.org/pub_releases/200...s-ats081009.php

Yes I explained that it was used as a diagnostic tool. He said he wouldn't change a thing while the steroids were going on. He felt after the steroids we may be able to go off Abilify because he would be better. I would love to get him off it. I wonder if the steroids made the constipation worse. I agree it may be medical const and seems common in spectrum kids. The last psychiatrist was so nice. This guy seemed very odd almost skeptical of me I guess because I had not followed orders to change to risperdal. Almost like he was on a power trip, I didn't like the way he was so critical of me almost made me feel like he was pointing the finger at me as being unstable or abusive. Has anyone else ever had a psych like that? Very creepy. I told him I just want him well and that would make me less stressed. I pray the steroid is working its magic and he will be much better soon.

Still never heard from Latimer. I can't believe she is not following up on these concerns. Today we went to a new psychiatrist. He was very skeptical of me. I got an eery feeling from him. First he was really Pissed I had never given the risperdal the last Dr. he replaced had prescribed. I tried to explain that we had added clonidine and one change was enough at a time. That Dr's prescribe this stuff and then are on vacation and leaving the practice and no where to be found when complications arise. That it is just too much and too overwhelming to make too many changes at once. That I am irriated by the whole process of the medical system and schools and medical coverage. Then Dr. Latimer and the steroids set him off. He wanted to know what medical documentation or proof she had for the PANDAS. He wanted to know what was going on that he has been to Dr's out of state for PANDAS and who diagnosed it. Then he turned the whole frustration and anger issues onto us at home and how we are handling him. How we need to be soft spoken and calm wih our voices. I explained how hard that is when he is smearing BM on my carpets and blinds 3 times a day. How he loves to agitate us and squeal and scream to irritate us. The Dr. said he never heard of a stomping tic. That Andrew has been coached because he uses words like echoalia when he asked him questions(while I was out of the room). I have never used the word echolia before but had heard it at a Dr's office that we don't use that word only echo. Andrew said he asked if we beat him. I told him he tells us we are mean all the time when we don't do what he wants. He suggested changing nothing until the steroids are done. He wants copies of all medical notes. He wants Latimers notes and test as she ran. He wanted ped number. He wants us to get a MRDD advocate involved. He suggests being calmer in our house and getting therapy for myself. He said I need to be healhier for him. I seriously don't think this guy had much people skills or had any idea about what a houseful of kids is like. I guarantee he didn't have kids. Overall I think he thinks we are the problem. I definately could tell he didn't believe in PANDAS. I think OH has been coached by naysayers on PANDAS and that the parents are the problem. Lord help us all! I took my scripts and got out two hours later no less. I think I will need to find a new psychiatrist again. [quote name='T.Mom' date='Aug 10 2009, 09:21 AM' post='36000\ She has always been very responsive but I always call the office (rather than email) with medical concerns. Hope things get much better soon--

We are doing the three week burst with the taper down method. However, after 12 days my son is still an emotional wreck. He is edgy, cries easily, screams mean things at us, and loses his temper in a huge meltdown at least once a day. Do you think continuing through the three weeks is the right way to go? The Dr. has not responded back to me after she told me to let her know about his progress. It is very hard to take him out of the house because his rage is unpredictable. Then he is on other meds and it makes me wonder if they could be the culprit also. I am at a loss. Of course none of the psychiatrist got back to me either. Also he is having BM issues again where he can't get it out and is soiling himself again multiple times a day. Could the predisone cause constipation? When he goes it is soft but tiny and he can't get the rest out. He goes like 7 times a day and doesn't always make it in time or pieces fall out. He had started smearing his bottom across the carpet and register trying to get it out but I really got after him. How much of this is behavioral versus not able to control the bowels and the moods? Possible encopresis? I am really confused about diciplining this stuff because I am so irritated by it all. If he does have Aspergers is his typical behaviors? I could give him Mirolax again Prednisone can take longer than 5 days to begin to help. One pediatric neurologist mentioned on this forum does a 3-4 wk burst. I believe that she feels that the improvement has a better chance of sticking with the longer course. When you think about it, that approach is consistent with how prednisone is used to treat other autoimmune/inflammatory disorders like severe asthma and eczema, and colitis--a steady dose until the symptoms are under control, and then taper down. But more importantly, that is how prednisone is used effectively to treat acute Sydenham's Chorea, whose disease mechanism is considered to be very similar to that of PANDAS. Overall, I get the sense that prednisone bursts are under-utilized as a possible PANDAS treatment. I think that a month-long course of prednisone is probably worth a try before resorting to more invasive therapies like IVIG or plasma exchange. Long-term (months & years) prednisone has bad side effects, but side-effects of short term prednisone use (less than a month) are usually short-lived and not serious.

Anyone been emailing Dr. Latimer and not getting any response back? She told me to email her after a week and I did and then one other time this week I emailed her and never heard from her. Maybe I should call her office. It makes it really hard when you are having questions and problems to never hear back from the Dr. after she prescribed these steroids. He is still irritable and loud and moody and hyper on them after a week and a half. He screams and gets really enraged, my walls are all marked up from his throwing things at them. We have been having BM issues again and he has been smearing it on the carpets and across the registers several times a day. Is it the meds? He keeps having to go BM like 5 times a day? I am ready to have a nervous breakdown here. I actually plan to cut back on his Abilify and Celexa because they don't seem to be helping anyways. He is more anxious and angry then ever before. I kept him on the clonidine because it makes him a little calmer and takes the edge off and helps him rest. Any suggestions from those who have done steroids? His psychiatrist is on vacation for two weeks, the psychologist just informed me our insurance denied our tthree visit claims because they are out of network after they told me they accepted our insurance. The OT, PT, ST just informed me our visits ran out in July and we have been going once a week and were not covered! The pther psychiatrist we were seeing left the practice. I fear going broke over this stuff. These office visits add up fast. We just paid Latimer $550 and I can't even reach her for a follow up question. When does this ever let up? How do other parents cope with the stress? LOL, when I spoke with Andrea at Dr Latimers office, she told me that people are suddenly coming from all over USA, and I mentioned to her this site.

Glad to hear from you. How did you get the steroid burst from Dr. K's phone consult? Which Dr. wrote the script? We did the consult but could not find a local Dr. to write it. Hi, my first post on this forum! (I have been surfing around lately and found lots of good info) I just finished my second son's 5 day prednisone burst. I was thinking if I should start a new thread with our story which includes at least 2 of our kids and maybe more, but in the meantime, here is our information relevant to your question. (I copy pasted the info below from elsewhere and then edited it, so sorry if the grammar isn't perfect) My second son's PANDAS symptoms started about 3 years ago, his tics included eye rolls, grimacing with mouth, licking upper lip, lots of yelling and shouting when he got irritated etc He tested positive on the ASO/Dnase tests. He was on Zithromax for about 2 years and stopped taking it in April 09. He was OK for about 2 months, but when he caught a virus, his pandas symptoms came back. There may have been a sibling at home with strep at that time. Since then, his symptoms have been up and down. We retook his ASO/Dnase test on 7/09/09, it came back positive with the antibody count at 170. On 7/25, we started him on a 5 day course of prednisone - 30 mg a day (he weighs about 65 lbs) per our phone consult with Dr Kovacevic. Day 1 he did great with noticeable improvement - he was much more calmer and relaxed than usual, on day 2, apparently the prednisone reduced swelling in his sinus areas, because he came down with numerous sinus symptoms (coughing, sounding nasal etc) and his pandas symptoms got real bad, we skipped day 3, then day 4, 5 and 6 he took 20 mg, and then this Saturday he took the last pill of 10 mg. Once the sinus type symptoms subsided, there was some slight improvement while he was still taking it, but nothing spectacular. His last dose was this past saturday, and since then, he does seem somewhat improved. On day 2 and 3, he was licking a lot his upper lip, and that seems to have stopped. But we still haven't seem him yet as good as the first day he took the prednisone. If I remember to check back here, I'll gladly update the progress. PS I have an appointment scheduled with Dr Latimer at the end of this month. So far, I've heard pretty good feedback about her. If anyone has more to add, I'd like to hear it!

Wow Nancy. wouldn't that be great! I just would like them to show the day to day issues PANDAS kids face. Not exagerated to get viewers just realistic. The medical journey and trying to find Dr's hat will help, the compulsive behaviors and emotional troubles, the meds issues and getting schools to recognize the disorder. Great exposure.

.....

We got our kit Sat. and it was very exciting. The animal is really soft and cool. This is a great idea.

Great news. Sorry to hear about the nausea. That has to be rough. She is so young yet. Andrew had this since age 13 months but we never went the IVIG route. Looking back makes me wonder if he wouldn't be so ASP/Tourettes had we treated it sooner. Although his episodes weren't as bad OCD as some of the others here have posted. I am so glad you are enjoying some better times. I have seen a few improvements wih the steroids too. We went shopping this morning and he was very nice and coopertive and did not even have his meds in him yet. He has been really mean some of the time with the irritability and quick anger on the steroids but I can see glimpses of a loving son beneath that wants to cuddle and is sweet and polite. Let's all pray for improvements to continue.

Nancy, these are wonderful. I can see her artistic talent. You'd make a great writing team!

Worried DAD, I pray things improve for your son soon. I am right there waiting for any sign of improvements with my son. It has been our worst exacerbation yet since June. I feel your sadness. Nancy your daughters symptoms seem so familiar. I would love to talk to you about meds because we are having such trouble with moods and emotional dysregulation. I was wondering if you did steroids since my sons anger and agitation seem worse on them. Does your daughter have aspergers? I am not sure if this is true ASP or just PANDAS symptoms that resemble ASP. I am excited to get your book! Michele

I pray things have been going well. Please keep us posted on her progress.

Nancy I am very interested in what you are trying to convey. My son was not born autistic. In fact he seemed perfect up until he was sick at age 13 months with strep. Then he seemed to improve inbetween infections. These aspergers symptoms came on gradually with repeat strep infections and gastro issues and age. Now it seems he is not improving anymore even on meds. That link you posted would not work. Do you have another one in regards to the book? For the temper and anger issues, do we need to get a behavioral therapist for like ABA? We are seeing a psychologist and psychiatrist but not seein improvements in how he handles anger. Do you have suggestions?

Maybe PANDAS is a spectrum disorder though and so is PANDAS. It is a pendulum and PANDAS is to the far left in the PDD/Aspergers category. Autism is to the far right. In our case untreated PANDAS went on for five years other then antibioics when we treated an actual infection. Plus he was under two when it strated. Now he has many PDD/ Aspergers traits. I see many of these disorders overlapping with the PANDAS which makes it tricky to define. OCD, ADHD, Tourettes, PDDNOS, plus the mood issues. More and more I am finding autism and pandas together. Here is an article showin the relationship. http://www.klaire.com/images/PANDAS.pdf Here is an article explaining the aspergers/PDD Symptoms of Asperger’s syndrome:http://www.helpguide.org/mental/autism_spectrum.htm Asperger’s syndrome is the mildest of the autism spectrum disorders. Unlike autism, speech is not delayed or impaired in Asperger’s. Children with this disorder have good language and verbal skills. They have normal to high intelligence. However, they have problems socializing and communicating effectively with others. Children with Asperger’s syndrome often come across to others as socially “clueless” or eccentric. The signs and symptoms of Asperger’s syndrome include: Obsession with a specific topic. Long, one-sided conversations. Inability to read other people’s reactions or nonverbal cues. Unusual or inappropriate eye contact, gestures, and facial expressions. Insensitivity to the feelings of others. An overly-formal, high-pitched, or robotic speaking voice. Failure to grasp humor, irony, and figures of speech. Repetitive routines and rituals. Clumsy or odd movements. Sensitivity to light, sound, and pain. Of all the signs and symptoms, an excessive, all-encompassing preoccupation with a narrow subject or interest (such as airplanes, spiders, or weather) is often the most prominent. A person with Asperger’s may spend a great deal of time memorizing facts or collecting and organizing things related to his or her obsession. Symptoms of PDD-NOS For children who meet some, but not all, of the criteria for autism or Asperger’s syndrome, a diagnosis of PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified)is given. PDD-NOS is also sometimes called atypical autism). The PDD-NOS diagnosis is reserved for kids who have many autistic-like symptoms, but don’t quite fit into the “box” for the other autism spectrum disorders. For example, their symptoms might have started after the age of three, or they may demonstrate repetitive behaviors and abnormal speech, but have better social skills than other autistic kids. In some cases, a diagnosis of PDD-NOS is eventually changed to something else as the child gets older and the symptoms become clearer. Learn more... A Parent's Guide to Autism: Understanding the Symptoms, Causes, and Early Warning Signs Autism Diagnosis and Treatment: Getting Professional Help for Your Child Helping an Autistic Child: Tips for Choosing Treatments and Finding Support Parenting and Attachment: Bonding for Secure Attachment

Here is a website that is supposed to help get the IVIG approved. http://www.cidpusa.org/PANDAS.htm It recognizes PANDAS as autoimmune and so does the autoimmune society. http://www.aarda.org/research_display.php?ID=47 It would make no sense a hospital would deny treatment to a recognized autoimmune disorder. Could your Dr. just be using this as an excuse? I know my ped was too afraid to do the procedure. Go to Dr. Latimer or Dr. K they will get it done for you. Good luck. I thought that hospital privileges included being able to use the hospital facility and support staff to conduct a procedure.

She just agreed that his bowel issues could have been related to the strong antibiotic he had been on for awhile. She thought it was okay to give it a break. Said the antibiotic isn't essential since it is neuro/antibodies not really strep and she thought some people were becoming resistant to them. She never mentioned azith and I will have to email her about its inflam quality.