wornoutmom

Showed this to my son yesterday and he totally cracked up. I've watched it now like 5 times and it cracks me up everytime. Gonna watch it again this morning to give me strength going into today's IEP. Thanks for the boost EAmom!!

Amen! But as if these PANDAS docs weren't busy enough as it is....You have given me the idea, however, to ask our doc if he might write something up for future use when he has a minute ( ha ha). He did at one time offer to talk with the school if it would help. Maybe something for future use or to use in calling another IEP if they don't give me what I want/ give him what he needs. Hmmm... I'm just not sure anyone understands WHY this happens so they don't put it down in writing. I'm already gearing up for battle tomorrow. DS came home today saying the teachers are now giving him a hard time about using his unlimited bathroom passes (part of his IEP.) He's using them more to take quick "get it together" breaks instead of running to the counseling center every day for 2 hours and missing class. It was a suggestion by his therapist, encouraging him to manage his anxiety on his own, independently, for shorter periods of time, but whenever he needs it. An idea that is working by the way. But oh no, the school would rather have him back to calling home every day in tears. Because heaven forbid he be allowed to use the bathroom unsupervised when other kids can't... Sigh...

coachadamb - I also live in Michigan and may be able to help. "PM'd" you some info.

Amyjoy: Denied, denied, denied by Aetna for IVIG in June. Despite 3 appeals, peer to peer review phone call and letter from the chief of pediatric neurology of a very well respected children's hospital. Paid entire amount out of pocket.

This is EXACTLY what I needed the day before I go into ds' IEP meeting!! Thanks for the laugh. I think I may just bring the iPad and pull up this video if they start giving me a hard time!!

brown eyes: This anecdotal info is what I am talking about! I have talked to so many moms who say their child's reading ability has been affected! When ds was at his worst in 6th grade he reverted back to reading "the hungry caterpillar". His brain just couldn't intake more. He can read short articles and non-fiction, but cannot track/remember through a fiction chapter book. We handled it last year by me reading to him and then writing down a summary after each chapter to remind him of what was going on. But he can be 3/4 through a story and not remember the main character's name!! The school doesn't consider him reading disabled and the only thing I can push for is the OCD angle, though he swears he is not re-reading or repeating words or anything. He does the same thing with movies. We have to pause many times to re-explain the plot. There are also the requisite reassurance questions he asks, but this is different than the confusion. I think I many approach it from the "doubting" angle and see if the school will understand it that way. MomofOCDson- thanks for the website. I think there is something in there that may be useful. Fixit - I may try the overlay to see if it does anything. This is like a colored report cover, right??

Need to get ready for ds' IEP on Wednesday. Does anyone know of any articles out there that speak to how PANDAS affects reading ability? He has never been a strong reader, but 3 years ago when PANDAS knocked him off his feet he lost his ability to comprehend what he reads. The school says he has no reading disability, because when they test him he can read and sound out every word on the page. But he doesn't understand what he's read and is unable to track stories longer than one page. Schedule is switching in 3 weeks to 2 heavy reading courses (he's in 9th grade) and I'm really concerned for him. I was thinking maybe there was some article or something I could bring into the IEP to get the school to take this seriously. I know from talking to enough parents and docs that this is a PANDAS symptom. The schools solution is to give him the book on tape - but he can't seem to track that either. I want them to write chapter summaries for him and put this in his IEP, but need some back up. Anyone know of articles or have experience dealing with schools on this? Thanks!!!!

Has he been treated for the MycoP?? Positive IGm would indicate recent /current infection I believe. This is a really difficult bug to eradicate and I doubt the current abx strength you mentioned would do it. Is the Risperidone helping? This was our go to drug at the worst of times.

Joan: I don't think you should be too hard on yourself for participating in your son's rituals - it's been a really really rough road and sometimes you just need to keep the peace. The thing with doing compulsions for your child is that you can't stop doing them all at once. It would just provoke too much unbearable fear for him. I think it's more like picking one to tackle at a time and announcing a limit and sticking to this. What you pick can be (in my opinion) what is driving you crazy the most. My son had a compulsion to squeeze my biceps. I started feeling really violated. Set a limit of 3 times a day ( he had been doing it like 7 times a day). After he got used to that, I lowered the limit to 2 times a day etc.. We have done this with my son's need to ask reassurance questions - I'm only going to answer that "X" amount of times and then say "this is the second time I am answering that and that's the last time" and when he asks again "I've already answered that twice and I'm not going to again. You tell me the answer - I know you know if you relax and think about it". Sometimes if I see a new ritual pop up and I recognize myself being pulled into it I will refuse it from the get go before it really takes hold. I'm guessing your son has been through enough therapy to recognize that he's pulling you into his rituals and hear you when you explain you need to reduce this for your own sanity and that you're going to work on it together a little at a time.

A couple of great books for the younger set are "Mr Worry" and "Wemberly Worried". Mr Worry was a big hit at our house and for several years my son would request to read it when he felt his OCD/anxiety ramping up. Unfortunately, he ripped it up in a symbolic gesture during a rage attack at age 12, so we no longer have it... Can I ask what her food issues are? Are they related to contamination fears? ERP is set up in small incremental steps and tailored to what the fear is. For us, my son thought all food that was refrigerated was contaminated and stopped eating. So our ERP was directed at the refrigerator fear, not the food itself. Once he overcame the fear of the refrigerator (and trust me this was very hard work) the food followed along. Maybe someone could make a specific suggestion to try if you can provide more details?

I just wanted to add a cyber hug!!!! I have been in your position countless times and felt those feelings of utter exhaustion and wanted you to know my thoughts are with you!!!!!!!!!!!!!!!

Brian: These results are similar to what we got. You're the 3rd person I've seen who's results were so exactly similar to my sons. It's very puzzling all these PANDAS diagnosed kids now are being diagnosed and are improving with Lyme treament. I'm so grateful for the parents who have shared what they've learned. I think in a year or two we'll be able to look back and it might be more clear, but for now we're all just in the thick of it. I've been sitting with our results a while, trying to find the energy to move forward. It's hard when your child is so much better. I teeter between just being so grateful for the improvement he's made and knowing I have to keep looking for answers for this now that I have this info. After consulting with our doctor, we have chosen to re-test. Band 31 can be cross reactive with EBV which we know he has,and other viruses leading to false positives, so we are doing the 31 band specific confirmatory test. This "should" confirm if the positive result on that band is indeed due to lyme or something else. If you find a good LLMD in Michigan, please PM or email me as we are probably headed that direction as well... -Rachel

Just had to say hmm....as these results are IDENTICAL to ours....

Joan: Oh Lord my heart is just breaking for you. I know you have done SO SO much to try and help your son and I know how devastating and terrifying it must be to see his sufferring continuing. I'm going to share something that maybe some on this board may disagre with, but I'm just putting it out there. When ds was sufferring greatly this fall (on abx, tried steroids, post IVIG, in therapy etc etc)we put him on xanax. I was extremely hesitant to do so. My goal was to get him OFF psych meds, not on more. But a few wise folks convinced me that it would be the kindest thing to do to try and see if it could ease his sufferring, if only for a while. He found almost immediate relief, and once we got the dosing right he has continued on it daily. It wasn't a magic pill, but it tamped down the anxiety enough to allow him to function and work his therapy program and start to heal. Xanax can be addicting and can be a serious drug. We had never used it before because it just is not often prescribed for children. But I know your son is older and it maybe worth asking about or thinking about or just throwing in your tool box while he is so ramped up from the IVIG. We are all going after the cause to eradicate this horrible disorder, but I do think it may be worth addressing the symptoms while the body is healing... How many of us take Ibuprofen to ease the discomfort of a fever, even though the drug will do nothing to get rid of the flu... I know you will get through this, but if you need/want to talk call me any time!! -Rachel

Fixit: Back in March/April Dr T tested for Myco P and his IGG came up positive (IGM neg). We started with Biaxin and were seeing pos. response. Started on and off it, but went "constant" in June just to be safe. Subsequent tests conitnue to show IGG positive, and we are dealing with some probably positive Igenex lyme tests, so we continue him on this. Tried zith for a few days for a sinus infection and he went nuts. Switched back to Biaxin and was better within hours. Added Augmentin XR this fall with a relapse and no significant improvement. Strep testing has been negative since he was 12 (but was rampant at age 6-7 when initially diagnosed). Are re-testing soon on all of the above and if Igenex continues to look positive we are off to an LLMD. We have also added low dose of daily xanax to the mix as he began having panic attacks when he started highschool this fall and we were nervous to try steroids due to the lyme question still in the back of our minds. It has helped also. He is super fatigued (sleeps 8 hours, naps 2-3 hours daily) and its hard to know if this is a symptom or side effect of meds - I suspect both. IVIG is not covered by our insurance and we are still paying on the $12,000 bill. Our neuro who ordered the IVIG advised us to hold off on another basically in case he severely relapses again (ie. spend your dollars wisely kind of thing). Post IVIG this summer he looked healthy for the first time in years - dark circles gone, pallor returned to normal, cracks on the side of his mouth healed up. Last physical tic disappeared after he got his braces off in AUgust. He doesn't look as healthy at all anymore. But like I said in my earlier post, he is mostly functioning again. After suffering for so many years he has a long way to go to catch up developmentally and cognitively. I have no illusions that this will be a straight upward path to recovery or that he might not fall back into the deep PANDAS/PITANDS pit again if he gets another serious illness. But now I feel armed with a medical team and a support army of cyberfriends - and that is a long way forward from a year ago!!!!!!!!!!!!

With the snow on the ground this week, I've been thinking alot about where we were this time last year. Living with a sick, raging, violent, oppositional and severely anxious, OCDing 14 year old and desperately trying to get medical professionals to listen to us and treat him appropriately. I was alone, scared and seriously frightened we would have to re-hospitalize him. It is only due to the constant support of the parents here that I did not give up or give in. Despite not one, but two PANDAS experts telling me my son did not appear PANDAS, but likely bipolar, you all encouraged me to trust what I knew in my gut and keep going. I don't know how I did, but I did. This December we are 8 months on full strength Biaxin and 6 months post IVIG. It has been a long road, but my son is healing. Things are not perfect, but mostly he is "here" (and I know you all know what I mean). He is still on psych drugs, still in therapy, still only attending 3/4 time school. But he is more and more the kid underneath the disease. The kid I've only seen in flashes and moments in the last 3 years. In 6 months he has matured years. He is learning to use and practice his cognitive behavioral therapy and it is working for him. He has not raged in 3 months. There are no strange body movements. He is no longer defiant or violent. He is re-finding his sense of humor. We are having some nice, quiet family times. After living 9 years with this syndrome, I can't and don't expect it is over. But I have learned to appreciate every good day as a gift. His greatest fear now is that when the PANDAS symptoms return (which we are still seeing with mild illness and stress) they will stay and he will be "crazy" again. They don't seem to. His lows are not as low, and he is rebounding from them faster and stronger. The rollercoaster, for the moment, seems to have gone from the Demon Drop to the kiddie coaster. We are continuing to pursue to active infections his body seems to continue to be battling. I don't consider him "healthy" but do consider him "healing". And a year ago, that seemed like a distant dream in the future. Thanks to all of you. Hope I can pay this forward some day...

Vickie: Saw the video on Facebook and cried like a baby.

Oh Joan!! I have been thinking of you guys every day! This is SO great! I am so thrilled.

Michael - ds was diagnosed PANDAS at age 7 - he'll be turning 15 next week. Over the years he's had every symptom you could name except hallucinations and true anorexia. He has never been symptom free since his first strep triggered exacerbation ( showing symptoms even before this) at age 6, but got significantly worse again at age 12 and 14. Before PANDAS treatment began in the spring of 2010, his very worst symptoms was exorcist-type rages/terror attacks and inability to find words/finish sentences. He was also showing OCD contamnation, need to know, vocal tics, school anxiety and a few episodes of chorea during rage attacks. He's been on Biaxin since April/May, did a 5 day steroid burst, and had IVIG in June. By August vocal tics had faded, motor tics gone, rages gone, beginning to verbalize thoughts and feelings better. But the general anxiety was still there and he began having panic attacks. Things fell apart when high school started and we started him on xanax. This drug has helped a lot and he is functioning fairly well now. But the thing that made me pursue the lyme test was his constant fatigue (sleeps 8 hours, naps 3 more) and the "mystery illness" that cycles around every 3-5 weeks or so where he just feels lousy, like he got hit by a truck, with headache and weakness. All the physical symptoms could be somatic from the anxiety. But there was just something about it that makes me go hmmm....

Well, I've been sitting on the WB results for my ds14 now for 10 days, trying to decide how I feel about them and the ordering dr's thoughts. The dr. feels ds14 does not have lyme based on clinical symptoms and test results, but is open to re-testing in 4-6 weeks if we want - just cautions the $ may not be worth it. He feels we are already doing the safe but sorry thing by treating with abx full strength since April. Anyway, I'm on the fence about all of it and ready to hear other's opinions. Results were: IGM: ++31, +83-93, IND 41. A "possible positive". IGG:+41, IND39. A "probably negative". So I'm not concerned about the 41 - ds has had myco p. which could give this result as a false positive. Band 31 could also be false pos. due to EBV (another known past infection). I have not been able to wrap my head around a "false positive" reason for the +83-93. What also concerns me is that the positive results were IGM!!! Correct me if I'm wrong, but IgM usually indicated recent or active infection. So even if it's not lyme, I would think this mean he has SOME type of current infection. ?? Any thoughts on this? I'm trying to decide the next step. Just make an appt with LLMD and let her interpret results and/or recommend further testing if warranted (this means an hour and a half drive, and back on the doctor merry go round)? Go ahead and re-run the tests in a month and see what they show? Use a different lab for re-testing? Use a different type of test? Pull him off abx and then re-test? Any input or opinions on all this is welcome.

Emerson: I echo worrieddad that you yourself know best what you need. Ds has all of the above accomodations plus a few more. Here are a few additional things in our son's IEP that may or may not be helpful to you. - Tardy policy waived for 1st hour (since mornings are the hardest - it reduces the pressure) - unlimited pass to counseling office and unlimited bathroom breaks - word banks & formulas for tests/quizzes to aid recall (in case of brain fog or test anxiety freezing) - alternate setting for tests/quizzes if he wants - 2nd set of notes provided if he requests (definitely would ask for this if you are falling asleep in class still and missing things) -preferential seating -extended deadlines when/if home meltdown occurs (cause you just can't always predict when a meltdown is going to shut your brain down..) - large projects/assignments broken down and assessed in smaller sections (as to help him feel less overwhelmed) Also, I don't know how much anxiety plays into your school experience, as you most often talk about your physical symptoms. But if it is an issue, there are some suggestions on worrywisekids.com that make great sense. They are written for younger kids but can be applied to the high school level. Best idea is to write down a list of everything you might want and can possibly think of before you go into the meeting, and make sure your parents are on board with the ideas as well. Then figure out which ones on the list are most important to you, in case you get any push back from the school, you can stand your ground on those items. Also might not be a bad idea to write a letter explaining how PANDAS/lyme currently effects you in the school setting and at home. In my personal experience, the school won't be offering up ideas, but will give you what you want if you back it up with a reason. Best of luck with this. You are inspiring in your self-advocacy!!!

Our ds14 has been through the same thing as yours and it has not developed into an eating disorder, so I wanted to put that out there for you as a more moderate viewpoint. Ds was always a skinny as a rail boy until 12, when a combination of puberty, depressive overeating and psych meds saw him gain 25 pounds in just a few months. My formerly athletic, active boy was suddenly very uncomfortable in his body. He didn't want to go swimming any more because he didn't want to show his tummy. As he entered jr high he became/remained very self conscious, but it always struck me as a teen thing. All young teens - boys and girls - are acutely aware of how they compare to others. This summer, post IVIG, he decided he wanted to try and lose weight and began working out with a personal trainer and watching what he ate. Spent lots of time pulling his shirt up and checking his stomach, looking at his arms, commenting on others eating habits, calculating if he had eaten too much in one day or could still have a bed time snack. I have to say I was a little worried about the new compulsions. But we just watch and wait and be aware. He has lost 10 pounds, looks great, it has raised his self esteem and has not morphed into anything more serious. In fact, once the weight was lost, the compulsions' frequency died down to a slow trickle. I think with these kids there is a tendency to latch onto thoughts/things more obsessively period, but it doesn't mean it's definitively going to develop into disorder proportions. Just my 2 cents.

wendy: Yes, I have thought about it and it's on the agenda to talk to my doc about. Waiting to get ds' Igenex back first - which they said should be by Thursday. I've been mulling the possibility over that I need to rule out Lyme for myself for a while, but as many moms here do, I tend to neglect my own health when my son is struggling. Thanks for mentioning this though

Dawn - I took this drug for a while for fibromyalgia pain. It worked very well, but man did it make me foggy. My kids used to call it my "loopy" pill because I just couldn't think straight on it. Had to discontinue due to this side effect. Hope it goes better for your kiddo!

Our pediatrician recommended AGAINST the flu shot for everyone in our family, given the PANDAS. She mentioned there are a few non-PANDAS kids in her practice that are having "complications" from the shot.