kimballot

Yes - you are right. The turkish paper is uplifting... just scary to be so close to the other side... scary where our kids would be without treatment... without an understanding of the underlying infection. Sad that those men suffered for so long and nothing anyone did helped. I worked with people with mental illness quite a bit early in my career. The Turkish men sound like so many of them. Some of the people I worked with were in a geriatric ward of a state psychiatric hospital. I was a student at the time, so I would often stay late and read the old archived files. I always wanted to understand when the people changed from being someone's child or brother or sister to a "mental patient". There were so many times when the mental illness was preceded by a fever or an illness or a head injury. At the time, I certainly understood the head injury piece, but I never really understood the fever or illness. It is scary that the only difference between them and my son is the year. It is 2010 and we have the internet and information on PANDAS. If it were 1910 we would not. So... it is both scary and uplifting!

Thank you, Betty - We've not done IVIG, but if/when we do I'll be sure to write down lot numbers!

Now THAT is a scary paper!

Croatian docs aside... download a good trashy novel to LISTEN to while you do other things (like cleaning, etc). It will help keep your mind from wandering down the long PANDAS path for a while. Many public libraries have free downloads for your computer, ipod or MP3 player.

All I can say is WOW and THANK YOU. I hope your son is doing better now. We have so much work ahead of us.

We have had similar issues. It is amazing that my son can sleep at other people's houses and go to sleep away camp and be fine, but have trouble sleeping alone. We did see improvement in this around age 11 when we did CBT while he was in remission. We had to take it slow - sleep with lights on and Mom doing work at his desk... sleep with lights on and Mom in the hall doing work.. sleep with lights on and Mom across the hall... sleep with Hall lights on..etc... you get the picture. Have you done CBT or other approaches that folks talk about?

Deby - I have been following your posts and I am wondering about your son's allergies and infection. You went to the allergist a few days ago, but I am not sure what the outcome was. I may have missed that if you posted it. Did you find allergies for your son? Why did you decide to go to the allergist in the first place - was it because you thought allergies might be causing the tics, or were there other allergic sings? I am also wondering about the elevated DANASEB - do you have any idea where the infection may be coming from? I am asking you all of this because there are many reasons why kids don't eat when they are sick. Many of the kids on this forim do not eat due to fears around food - like fears of choking or obsessions about getting fat. My son does not have those issues, but he does complain of food not tasting right when he has a sinus infection or when his allergies are very bad. Are you doing any allergy medications or ibuprofen (to reduce inflammation) in addition to the abx?

Some of you may remember my post from a few weeks ago when I talked about my 13 year old son who had been having PANDAS symptoms most of the school year (mainly after the flu), and the local docs not wanting to look for infections, assuming it was due to depression. Dr. T ordered bloodwork that revealed immune problems and a strep infection, and Dr. B ordered a sinus CT scan figuring the infection was in the sinus due to my son's lengthy history of sinusitis. We then found out that my son had a mucocele in his ethmoid sinus that had been there for a very long time and had remolded and decalcified the bone between the sinus and the eye socket, so that it was actually resting in the eye socket. ( http://www.latitudes.org/forums/index.php?...pic=8291&hl ) Well - I've calmed down quite a bit since that last post - though it did take a while for me to get over the idea that this thing was growing in my son's head and pressing against his eye for at least a year, possibly two, while we yelled at him to pay attention in school and get his work done... We went back to Connecticut to see Dr. B (BTW -I owe a HUGE thanks to everyone who posted when I asked about immune deficiency - especially nevergiveup - as that is what led us to Dr. B - see - http://www.latitudes.org/forums/index.php?...pic=7424&hl ) Dr. B was as surprised as anyone to see this finding. He was SO good with us - really spent time helping us to sort out potential scenarios that could have led to this and potential surgery options. Helped us decide what to look for in a surgeon and how aggressive to be, then told us that we would put everything on hold until this was removed. We came back home and contacted the ENT that had done my son's previous 2 surgeries. He agreed that this has likely been there for years, and said that he could easily drain it and widen the opening to the sinus. He consulted with a pediatric radiologist who specializes in head and neck CT and also with an ENT/plastic surgeon who does adult sinus reconstruction. They've all agreed that it would be best to keep it simple and drain and widen the sinus. We also consulted with a neuro opthamologist who found that, while my son's vision had changed slightly in his right eye, it was not a severe change and there was no nerve involvement at this point... just muscle pressure. All in all, I am MUCH calmer than I was 2 weeks ago. The pediatric ENT can get my son in for surgery within the next 2 weeks, so that would be good... I am hoping to have him out of surgery and healed by the 4th of July so he can at least enjoy some summer after this miserable school year. I need to talk with Dr. B now about post-surgical meds. He will stay on zith and diflucan until surgery. I know we often say that we HATE PANDAS... but I have to tell you - PANDAS saved my son's eye. If it were not for the PANDAS symptoms, this forum, and the Dr. B, my son would be on SSRIs (probably increasing in dosage as his infection increased) while he failed in school and had more and more damage to his eye as the bone continued to erode and pressure continued to mount. We were truly blessed to catch this in time. Let us all remember that our kids are fighting real infections. Please - if you are not seeing a doctor that specializes in PANDAS.... please try to get to one.

I JUST VOTED - AND WE ARE AT #9!!

Kimballot- When this bumped up I realized I never answered- He can hold them straight- this is just something I think he is compelled to do...as I said yesterday- I think I can officially say we have OCD issues now...dear God help! Brandy Brandy - I see from your other posts that you have discovered many things about your son since this finger positioning started. It sounds like you have an appointment coming up with Dr. K and I am hopeful that he will be able to put everything together for you. I look forward to reading your posts.

We need to keep it light - .75 mg for a 13 year old boy. Any more than that and he has bad dreams and is tired the next day.

Congratulations on a job well done! I look forward to hearing about your son's progress in the coming months!

I see increased PANDAS symptoms when my son's allergies are high. I don't know of any specific literature on this yet. Allergic reactions trigger a host of immune changes and also trigger inflammation. That is why kids are more likely to get sinus infections and ear infections if their allergies are not under control. In theory, the inflammation from the allergies and / or inflammation from secondary infections may lead to a breach in the blood brain barrier that is thought to contribute to PANDAS reactions.... but I don't know of any hard evidence for that.

Ahh... in my next life I want to be John Rosemond and have all the answers and well behaved children. I do truly admire the man and I think his common-sense parenting is great for typically-developing kids and for my son when he is feeling well. I also enjoy reading his extensive line of research (his two children and seven well-behaved grandchildren, from what I can gather, are his research subjects), which is a testament to his approach. The man is also an excellent writer and story teller, and he does have a full line of books to sell on his website ( http://www.rosemond.com/ ). I am not sure, though, if this particular article tells the whole story. Mr. Rosemond's story about a child who was diagnosed with Sensory processing disorder and the OT clinic that recommended therapy strikes me as not quite telling the whole story. While I am not privy to the whole story, it would really be against standard operating procedure for an occupational therapist to recommend sensory integrative intervention based on a potential sensory preference in one area (dressing). I suspect that if the therapist recommended SI intervention the child was having dificulty with sensory processing across environments and tasks (ex: sticky glue in preschool, getting hair washed, having finger nails and toenails clipped, eating a variety of textures). IF an OT recommended intervention based on ONE behavior - then shame on that OT and Mr. Rosemond is correct in his admonishment. If, however, the OT recommended intervention due to a pattern of behaviors seen across environments to the same trigger - then I wonder if Mr. Rosemond's intervention also solved the problems in other environments (glue?hairwashing?toenails?fingerpaint?food textures?) While Mr. Rosemond is correct that Sensory Integration does not have the wide scientific basis that older approaches, such as behaviorism, have, he is not correct when he states that there is no scientific evidence behind sensory integration. Dr. Lucy Jane Miller, the founder of SPD foundation ( http://www.spdfoundation.net/founder.html ) has dedicated her life to investigating sensory processing disorder and she and others have demonstrated, among other things, changes in cortisol levels in children with sensory processing problems and changes in goal directed behavior using sensory interventions. A listing of SOME SI research is easily found on the SPD website at http://www.spdfoundation.net/library.html Dr. Miller's foundation has also been successful in having "sensory processing disorder" listed in the 2006 Diagnostic Manual: Zero to Three (sort of a DSM for Early Intervention), and in the 2007 Diagnostic Manual for Infancy and Early Childhood... and the diagnosis of SPD has made the "final cut" to be included in the DSM V. ( http://www.spdfoundation.net/dsmv.html ) As with any type of biological problem, chldren with SPD do run a high risk of developing behavior problems as well. Children with physcial problems often CANNOT have typical behavioral interventions used until the underlying physical problem is addressed. Too many professionals see the world as "sensory" or "behavioral" as Mr. Rosemond is espousing. I, personally, am a strong believer in combining sensory integration and positive behavioral support for the betterment of individual children. But then again, what do I know... I have a kid who was kicked out of preschool and play groups and sports camps... but he has somehow turned into a teenager that is respectful to teachers, friendly to other chldren, and polite to parents despite his physical illnesses. Hmmmm ....

I have had success by starting with a good nights sleep. We use melatonin and that has helped incredibly. The more over tired my son is, the more wound up!

Smarty - Great post. You bring up such a clear problem with PANDAS - INCONSISTENCY!! One week our kids look great and the next they are a mess - leaving others to assume that they are not trying or it is behavioral! I think the best thing you could do is to keep a journal (like Buster's) of behaviors, sensory reactions, and medications. That way when you get an OT eval you can show if your child is in an exacerbation or not. The OT will likely need some inormation about PANDAS. I would recommend the Moretti http://www.ncbi.nlm.nih.gov/pmc/articles/P...5-0179-4-13.pdf article and Buster's fact sheet http://www.pandasnetwork.org/busterfact.html You could also consider a private OT consult outside of school. Hopefully your insurance will cover it. I would plan to have two visits. Once when your child is doing well and one during an exacerbation. OTs are learning about PANDAS... it all just takes time! It is important to know that while kids with PANDAS have sensory issues during an exacerbation, they do not necessarily have a sensory processing disorder (IMO). I know my own son always looked like kid with SI disorder when he was sick, but otherwise was really fine. I think the biggest thing an OT could offer in your situation would be some environmental modification and a "sensory diet" for when you son is in an exacerbation... but I am not sure if your son even needs that from what you have posted. I think an OT could understand the inconsistency with some information from you and could consult with the teacher as needed.

Wow! Keep us posted! This is great!

Brandy - First off - I am with you. I understand where you are coming from. That could have easily been my son 5 years ago. We saw it often. My understanding is that this pattern is seen in many children with sensory defensiveness... and we all know that many kids get very sensory defensive when their PANDAS ramps up. If you don't think your son has sensory defensiveness issues, then do not read the rest of this. If you think he does - this may help - or it may all be a repeat of info. for you but it might help someone else. Sensory input (especially touch input) basically goes through 2 systems - one is for deep pressure (that tends to be very calming) and one is for light touch, pain, and temperature (that tends to be arousing / alerting / annoying). A well-functioning nervous system can ignore much of the light touch/pain/temperature that comes in, and only respond when appropriate (like if someone pricks you with a pin unexpectedly). A poorly functioning nervous system send lots of information from the light touch system into the fight or flight response category. Make no mistake about it - a light brush and the kid interprets it as a major assault and then retaliates or runs away (without thinking about it). My son once decked a neighborhood kid when the kids' coat sleeve brushed my son's neck and my son said he "whipped" him with it! Sometimes the lighter the touch the more noxious and painful it is! So.. here's the problem in school... I have no doubt that the little girl grabbed your son's shirt and he felt like she was choking him. However, to an outside observer this may not have looked as bad as your son felt. Understand - your son DID FEEL like he was being choked, but that may not have been the case. I don't know if you've read the out of sync child or checked out their website. They do a very good job of explaining this. Does your son receive OT in school? If he does, please speak with the OT and the social worker or counselor. Together, they should be able to come up with a plan to educate the teachers and help your son to cope. In my case, we taught my son to go to a "safe place" when he felt like hitting or running out of the room. It was a place in the back of the room that he chose, where he could go when fight or flight kicked in. Once moved to that seat, the teacher knew something was up and she could attend to him as soon as she could take a break - usually by bringing him to the couselor's office to talk it out and work on coping skills. It took several elementary school years to work on this, (we also did tae kwon do for self discipline), but we have not seen this problem in at least 3 years. If your son does not receive OT in school, please see if you can get a consult (even if he does not have an IEP he may be able to get an eval through early intervening services). You can also get an OT evaluation outside of school (your insurance should help with this) and the OT could consult with school. Talk with the principal about the problem. I have to tell you that in elementary school our principal was great, but I really kept an open dialogue with her (I was actually on speed dial on her cell phone for when my son had meltdowns!). Admittedly, that was dream team of educators that I will never see again, but I do think that principals understand if we are honest with them. Best of luck - keep us posted on how it goes!

Vickie - Is there any way to pin this first posting - with the daytime and night time supports - on the top of the page? You could probably replace the pepsi refresh post that is pinned now. That way it will be easy to find! Thanks again for EVERYTHING> I think we are going to do it this time!

Good idea - I also want to say that if you have access to a mac, my safari on my macbook has never frozen - though my internet explorer on my PC does regularly.

That is very interesting. My son certainly does have tics etc with allergies - especially if he also has an infection brewing. It all goes into the same nervous system and the allergy can be just the thing that makes it spill over into a reaction if he already has an infection brewing. Please keep us posted as you sort this out. I will be interested in hearing how his allergies are now that he has had IVIG.

Does your son have a diagnosed allergy to the cat? Do you use antihistimines? How was he at his friend's house - before he came home? I am curious because I have a very allergic son. We've not done IVIG yet, and I know IVIG is supposed to "reset" allergies a bit... but I am curious as to how much change there is after.

What will you be asking for in the 504 plan? What problems have surfaced in the past that you are trying to avoid by leveling the playing field with an accommodation? I agree that an outside evaluation / letter / documentation is very important. It is also important to let the school know how the 504 plan will make your child even with the other children (not at an advantage), and how it will increase the teachers' ability to facilitate learning in your child.

oops - double post - deleted

I could not agree with you MORE! My son WAS missed, hence my pen-name; he was diagnosed with OCD at 6, after having battled non-stop ear infections from about 14 months of age until past 3! Our PANDAS diagnosis was hard-fought and remains controversial within our core treatment group (pediatrician, therapist -- psych just came around a few weeks ago!). No problem with any of them handing a 7-year-old Lexapro, but a strep test and/or abx? Have mercy! I do not know why our kids are not given simple, routine tests for infection before being assigned a mental health diagnosis. It seems to me that there should be a good attempt to rule out medical conditions before assigning mental health diagnoses, and insurance companies should not only cover it, they should DEMAND it. It will save them tons of money and save society a great deal of burden in the long run if we can clean up infections and let kids become fully functioning adults! Count us in on the families that were given mental health labels instead being fully evaluated for physical problems.