dcmom

Remember Sammy's case was 7 years ago. In the book the doctor told Beth, when she put her son on antibiotics, to start looking for someone to do pex or ivig. There was no one in the country doing that for pandas at the time.

peglem- I am in tears reading your post. I am so happy for you, and through your fight to help your daughter, your are probably sparing lots of other kids such a long time of suffering. Plasma pheresis is the same thing as plasma exchange. I have talked to several moms who have been through it, and we have met with the doctors regarding this- it really seems like no big deal compared to the suffering these kids go through. Would you be coming to Georgetown, or can you have it done locally?

Hi, welcome, and I am sorry you are struggling with pandas. There are many helpful parents on this board, that I am sure will respond to your post. I can tell you what I know. There, unfortunately, is no standard test to determine pandas. Titers definately do not give you the answer, they have no relation to pandas, actually. Strep titers are done to indicate if there has been a strep infection in the past. They are high in some, and low in other pandas patients. Pandas is really a clinical diagnosis. It is based on a child's symptoms, typically looking at a sudden onset of psychiatric and physical issues. These are not limited to, but include: urinary frequency, bedwetting, tics, choreatic movements, ocd, sensory issues, rages, restrictive eating and/or anorexia, anxiety and separation anxiety. In a simple, straightforward pandas case (like my child), there is a sudden onset, with gradual worsening of some (not all) of these issues, coupled with a strep infection at some point. Unfortunately, there are many cases where the onset is slower, less "overnight", and where there is not a documented case of strep. Many/most of our kids manifest strep without the typical sore throat, fever, etc. I think what happens is, at some point they have strep- but that infection may resolve before they are tested, or it is missed with the swab. That is the bad news. Here is the good news: To really figure out what is going on there are some simple things you can do. First (the hardest), is find a decent doctor who will work with you. Tell us where you live... Second, get your child on daily dose antibiotics for at least a month. Many of us on the forum prefer zithromax. This is the only med that will get to the strep if it has gone intracellular. It is very important to completely eradicate the infection. Third, you can give your child a steroid burst (2 weeks of treatment, 2 weeks of tapering off). This will address the brain inflammation. It can be a great diagnostic tool for some, and for others it can jumpstart healing. The last thing, is to have a blood test done by Dr Madeleine Cunningham. She is a researching Dr who has developed a test for anti neuronal antibodies. You can email her for a kit, have blood drawn locally, and send it to her. This should be done in an exacerbation, before steroids. I know it is hard, but the faster you get all of this done, the faster your child can heal. Oh- and please share your story....

I kind of agree with Vickie. I don't have a major problem with the name. I don't necessarily think a name change will give the disorder more weight with doctors, and will definately add to confusion for parents and some medical proff.

My daughter has had separation anxiety with her episodes. We have seen a psychologist to help us deal with some of the issues. She gave me and idea for going to school, which I didn't think would work, but it helped us tremendously. My daughter basically likes school and her friends, but when pandas is flaring has a VERY hard time leaving me. We started a new routine of me walking her right into the classroom (all the kids walk to school- no buses). We get there a few minutes early, she has a chance to put her stuff away and give me a hug in her own time w/o the chaos of the other kids. By the time they come in, she is ready. On those mornings this is not enough (she cries, says she hates school and she is NOT going), I offer to come back at some point in the day (usually I choose lunch) and bring her home if she wants. I always stick to my word, and every time she wants to stay. By lunch, she is with her friends and more settled. (once or twice, she did want to come home from lunch- but I told her we would be going to the grocery store- she stayed). I am willing to bring her home if she needs to. I didn't think it would work, but it worked like a charm. I don't know if it would work for you logistically. But if things get worse, keep it in mind...

It brought tears to my eyes. He is a beautiful, normal kid! Of course, it was short, and didn't cover the bases- but the Today show is HUGE. So, even if it helps one family .... I agree with Beth, it is worth a shot for every kid with ocd or Tourettes...

While I am certainly not advocating any treatment (I am struggling to figure this out just like everyone else), I do want to make a few points. We saw the doctors at Georgetown. They have been doing pex routinely for a long time. The main "risk" with pex is that they have to insert a central line. (risk of infection, risk of clotting) The doctors explained to me, that with healthy children (which ours are compared with others that have this procedure) all risks are minimized. The main risk of infection increases dramatically after 5 days, so they make sure they have the line out in advance of that. When Swedo did the original study, the kids were there longer. However, I don't think she had any issues with pex. It has been the gold standard for some neurological disorders for a long time, according to our doctor. IVIG is administered through a normal IV- so you don't have the risk of a central line. It is a blood product (which is thoroughly screened and treated), so there is a very small inherent risk of disease transmission. This happened with 2 of Swedo's patients. I believe (maybe someone who has been through it can comment) there haven't been issues with disease transmission in many years. There can be some discomfort (flu like symptoms) and/ or allergic reaction to IVIG. Both can be monitored and minimized. Many patients recieve IVIG monthly for other medical issues. I guess we all have to weigh risk/benefit, how sick our children are, and what we have access to. I just don't want to really scare people from looking at these options, if it is needed. These procedures are considered a big deal when associated with pandas because most doctors don't believe in pandas, or are not interested in treating it, and because it can be hard to get insurance covg- and costs are prohibitive. I also have concern about high dose antibiotics, and frequently treating with steroids. This is another option for managing care. Although, in some ways it seems more benign- I wonder about longer term consequences. The decisions here are tough, and I think all options should be explored. Maybe our kids will provide the answers for future generations.

I did think I read somewhere, when I was researching strep tests, that it is possible. I would consider it strep, and treat it. If I find the info I was looking at, I will add a link...

Karen- We do think alike. I was thinking about designing an eye-catching, glossy, postcard about pandas. (postcards are cheap) I thought possibly it could be mailed/ given to pediatricians, psychologists, school personnel, etc. Maybe if I work on a postcard, I could make it available to parents on the forum and through pandas network to purchase directly from the printer and distribute in their "neighborhood". Kind of like a grassroots effort. I mean, if each of us could spare one child from losing as much time as Sammy did... Would everyone/anyone be interested? If so email me sroka2967@comcast.net, and I will email some ideas/designs for your input. (In a few weeks...)

Vicki- I had the same concerns as you. But although to us it might seem like the "cure" was a little oversimplified- I think the struggle and the suffering, and the total lack of help from the medical community, are key. I was also pleased that her doctor did tell her (and she did) to start looking into getting PEX or IVIG if the antibiotics didn't work. They really did not talk negatively about those options. He did HIGH doses of augmentin, and many times when he tried to come down the symptoms resurfaced. She also did say this is something he will probably always struggle with. All in all, I think you will be happy with it. My one and only concern is that Sammy was a much more severe case than my daughter. Possibly because it went on for much longer. When I thought Julia had pandas, my ped disagreed because she said "those kids can't function at all". (Well dd 5 had to go to school in pjs because she couldn't get dressed- so I argued that wasn't really functioning). I just hope that the medical community can realize there are different degrees of episodes, and possibly it starts more subtley sometimes. But, it really is a great book! I did just put it on my facebook page...

Last night I read "Saving Sammy" by Beth Maloney from cover to cover. She presented pandas, the struggle of the child and the family, the refusal of doctors to help, and the science of the disorder in an easy to read and moving format. I really thought she touched all of the bases. I can't help but feel compelled to do something. Right now, I feel the biggest problem with pandas is the lack of diagnosis. Sammy, like so many of the kids on this forum, could have avoided so much suffering and lost time if someone had the knowledge, courage, and taken the time to suggest pandas. A simple strep test, a trial of antibiotics, a trial of steroids. Frankly, that is a lot more cost effective and painless for kids and parents than months of intense therapy (that doesn't end up working anyway). But, we all know this. So, how do we get the word out? My initial plan is to write a two page letter about my daughter's story, and give it to people who might be key in helping someone else. I will include my info, along with pandas network and saving sammy. But, who to give it to? Local pediatricians? School special ed teachers and psychologists? I also plan on buying a few copies of the book, including my letter, and asking people to read it and pass it on. I would really love ANY thoughts about how to get involved in helping parents,doctors, etc. to recognize pandas quickly!

T Mom- I read Saving Sammy cover to cover last night, as well. I thought it was great! My daughter's case did not become as severe as Sammy's because we caught it very early, but we were headed in that direction. I thought she presented the illness, the agony is causes the child and the family, the unwillingness of doctors to help, the social isolation of the mom, and the necessary medical information in an easy to read, moving format. I am going to start a new thread about the book.

hi MomtoT- you were the mom I was referring to Julia is at the same place. She will wear panties with only dresses. If/when she has to wear leggings (or pants - ONLY for horseback riding) she will not wear panties with them. As I said somewhere else- I am not sweating the small stuff. I know we could work on this with therapy type interventions, but the thing is when she got better last spring, all this stuff went away. If she is happy, I am happy.

No, we are done. She did 2 weeks, then tapered off for two weeks. We had about 10 totally symptom free days. Then, at the end of the taper was exposed to strep- which brought everything back. But, thankfully, that was short lived (about 1 week). Now she is better than she was pre- pred- but not as good while on it. Sigh.

I am fairly open with my kids (pandas dd age 6- 5 at first episode, and non pandas dd age 9). I tell them that everybody has "fighters" in their body, called antibodies, that help them fight illness. I say that dd's fighters got confused, and instead of only fighting the strep throat, they bother her brain too. I tell her she has to "fight those fighters" when she is having ocd issues. She and her sister do understand, and for the most part are not freaked out. When dd was having an issues about panties NOT being comfortable. I told her that I talk to a mom of a girl, with pandas, that age that had the same feeling (I did). ALthough she didn't want to talk about it too much, her eyes lit up when I told her this. I don't want either of them to feel alone- which pandas does a good job at making the whole family feel. I think kids know, absorb more than we realize. I would rather be able to frame their thoughts on the important stuff. Read the father's post on pandasnetwork website, it is a good discussion of what this does to the family unit.

bronxmom2- It took me about 4 days on pred before I saw a big change- hang in there....

EAMom- thank you for taking us back to that study! We are hoping (fingers crossed that the insurance comes through) to get pex soon. I am wondering if it would be prudent to keep me, dh, and non pandas daughter on antibiotics for six months (to help the healing)? I spoke with a mom from the original study who kept all 4 of her kids (one pandas) on antibiotics untill pandas daughter reached puberty. It worked for them! (Nine months after coming off of abx her younger son developed pandas- unbelievable). Has anyone done abx for whole family? Eileen

Hi parents. I thought it might be helpful to try to compile some info here. I know there are many on the forum who have recently had IVIG and PEX. But, it can take a while for the brain to heal. It also takes a while to see if there will be another episode. I am asking, if there are any parents of children who have had IVIG or PEX over a year ago. If so, please give us a quick synopsis of your story, if you can. How long did your child have pandas before treatment, exactly what treatment you had, what the results have been. Maybe this will help those of us struggling in decisions to treat. If you know someone not on this forum who has a story- please ask them to come on and post. thanks Eileen

I agree on skipping the vacs. I believe the flu mist is a live virus. I still wonder if getting the flu mist two weeks after strep is what triggered pandas in dd.

I have to say, this whole thing is giving me a headache today. What stories do we have from this forum? Lots of kids here have gone to Dr K. Has IVIG worked for them? I always feel when researching posts, that they have IVIG and later are back with more issues. Is this because it just takes a while to heal? Do we have any PEX stories? I have a neighborhood mom that says her daughter had pex, and 10 yrs later has never had another issue (she was such a believer that when her son contracted pandas recently, she went straight for pex). Of course, there is another mom who I think many here know, her daughter ended up having pex twice, and still a rough road. She is a teen now, and doing well. I am thinking of starting a thread to ask people who are one plus years out from IVIG and PEX to respond. Are they still here?

I am Rh- and had Rogham.

Well, we are working on an appt for pex at Gtown with Dr Latimer. She is open to either treatment, but does feel pex slightly edges out ivig in results. She says that they have been doing pex for years and years for neurological issues. There is a team at Gtown that basically does it every day, it is pretty routine for them. The hematologist at Gtown also seemed to prefer it to IVIG as far as side effects go. I often wonder if some docs don't treat pandas, because they have nowhere to refer them to. Also, if Dr. K has access to pex. I mean, hospitals may do pex- but if they are not believers in pandas- they may not do it for that. I believe Dr Latimer was head of neurology at Gtown, at some point- so she has a lot of contact and carries weight there. She has put together a pandas team there! Unfortunately, our kids our ginnypigs (sp?). Regarding the other post- hopefully when our kids have kids- we will really know what works! I will keep the forum posted.

I cannot find anyone to trace pandas back to. I mean on my side- there is some autoimmunity in underactive thyroid- but that is it. On my husband's side- he says he remembers having strep every year- so maybe there is no immunity to strep. But either way- I know pandas stinks- but there are so many worse problems.... I was reminded of this spending the day Friday at Georgetown Hospital's pediatric hematology/oncology clinic. The other day I was (optimistically) picturing me fighting with her as a pre teen to take her antibiotics (assuming pandas was in her distant past). I hope that someday most of these issues will be behind us- but at the same time think it will leave our whole family with a new level of compassion and committment to those who are ill (especially mental illness). I try to imagine the positive this will bring to our lives, maybe one of my dd's will become the doctor that figures this all out! I just know now- if my kids have a decent day- I am happy. I did worry way too much about the little stuff before. Kayanne- I have totally felt that strep has ravaged my family. Non-pandas dd age 9, was NEVER sick, she had strep in first grade, and ended up missing over two weeks of school because she just couldn't get better. (strep, then "virus", then sleep apnea and eventually tonsils out). This time, when they both got the strep that caused pandas in dd 6- dd8 again couldn't get better. She was home sick with strep for a week, then another "virus" for a week. Since then- she gets daily stomach aches that cause anxiety. Things are not the same for her either. I am working on having her tested by Cunningham- I have to at least rule out a mild pandas for my sanity. Oy!

Wow- I am sorry you and your son are going through this. Don't feel bad, it takes many people years to get pandas diagnosed (and I am sure many go undiagnosed). If you treated before with antibiotics, and that helped- that is probably what you would have done anyway. There are a few steps that maybe you can take: First, see if maybe your pediatrician would have a phone consult with Dr Latimer, in Bethesda MD. She is great, and treats lots of pandas patients. I would ask for a month of daily zithromax to eradicate any strep that may be hiding. Strep CAN go intracellular, where pen and amox won't help. Also, see if your ped would consider prescribing steroids (a burst). This would be something like two weeks of a treatment dose and two weeks tapering off. Follow this all up with prophylactic antibiotics- and see how he does. Dr Latimer will be able to talk your ped through all of these prescriptions, and the science behind it. There is also a research doctor (Madeleine Cunningham) that has created a test for anti-neuronal antibodies (to help possibly diagnose pandas). Pre- steroids, I would have this test done. This will give your ped some numbers to look at, Dr Latimer likes this test as well- so it would help you if you do need her at some point. They do ask for $200 for the test, but it is fine to pay what you are able. The test is best done during an exacerbation. There are many knowledgeable and helpful parents on this board. I know there are a couple in Ohio that will be more helpful. Best, Eileen

My daughter had her first strep/pandas episode this past January (2009). I have been in contact with Diana (through this forum originally), periodically, she has been a wonderful source of strength. I believe my daughter's story is included on the pandas network website. I think Diana tries to keep an informal log of all current pandas kids that she makes contact with- I think she has over 90 cases. If you have not been in contact with her, it would be helpful to email a brief summary of your child's story, especially including onset and treatments to her through the pandas network website. I would also ask her to be included on her email list.