becjonz

You did awesome! What a great analogy to use about diabetes! You really kept your head in a situation that would leave me scared to death. Good luck with the follow up. I'll be eager to hear how you make out.

or let them visit me since I am a teacher and exposed to it all. lol I was a kindergarten teacher throughout most of Allie's childhood. I quit teaching 5 years ago so I could take care of Allie. I wish I could do that at times. Last Friday I felt fairly useless at work after dealing with a child at home who I didn't even recognize as my son. However, as a single mom...no such luck. But I'll take that any day than seeing my son yelled at by his father for his anxiety or have a parent in the house who doesn't really believe this PANDAS thing and thinks it is just a mom with an overactive imagination. (no I'm not bitter at all, why do you ask? lol) If I remember your story correctly Peglem I can understand why you had to quit. I feel so far I'm blessed that in the grand scheme Matt's PANDAS is not nearly as severe as some as I have read on here.

or let them visit me since I am a teacher and exposed to it all. lol

Okay so PANDAS is pediatric as the name says but my question (and DS' too) is what happens in the future? Eventually will he simply out grow it? Do some symptoms persist? I could stumble through more questions but I'm not even sure what to ask. I've seen references to kids in their late teens with exacerbations still so what can we expect. DS10 would like me to promise him that on his 18th birthday he will be magically cured. I've only told him I'm making no such promise as he may not sue me for my millions when it doesn't happen.

thanks, my kids had wanted them...good thing my frugality had so far won out.

Thanks for the info. I have not had ds take zyrtec daily, only on bad days but I may just make it part of the routine. I hate to add more meds but if he will have a smoother rode I will try.

Brandy, I have the binder started too with all copies of his blood work, doctor's reports, notes from meeting with or speaking with dr.s and even print outs of some of Buster's posts and good articles on PANDAS to share with others who are looking for info or for uneducated docs. I think it is invaluable and I love being able to refer to things in seconds.

I have seen some things here that have increased my questions based on my DS' experiences. Is there a connection between PANDAS and allergies? How does that link work? I've read posts about exacerbations from pollen and seen mentions of seeing allergists. I've also noticed seasonal allergy problems with my ds, absolutely being laid low until having allergy med and yet never had allergies in the past. We see an allergist next week due to his possible allergy to abx but if there is more I can get from this appt. then I certainly want to make the most of it.

Thanks these ideas do sound great and some new ones I'd never heard of. Sleep thankfully has not been an issue over the past few months. What is weird is that we just had to up all his meds as a way to manage an exacerbation since we are waiting to rule out an antibiotic allergy. I hate the increased psych meds since we are addressing symptoms not cause but that is another issue. My point is that he should be calmer. He was tired seeming on Saturday, fine Sun. & Mon., lots of tics Tues. super tired, headache on Wed. (had to pick him up from school mid day and he slept all afternoon) then to super hyper today. I can't figure out what is going on but when he is so wired I feel badly for him as he can't settle but I will try what you suggested. I'm first going to look at reducing sources of sugar, calming the atmosphere, add in melatonin and check out valerian root. BTW, the Benadryl worked thankfully. I hate Benadry- feel like I'm drugging him but felt trapped like if not I was setting him up for a bad day tomorrow. Benadryl amps up both myself and my other DS. I also never had success with Melatonin but Matt seems to not follow me in things like that so we will try. Thanks!

I just PM'd you and am so thankful for your offer. This sounds like exactly what I need. Thank you, thank you, thank you!

Yesterday my son fell asleep in school, was lethargic. Today...OMG! He is so HYPER! He is so hyped up, so not himself. We were at the store and I tried having him do some brain gym while we waited to pay. He turned that into somthing that was definitely NOT calming. I had to tell him to not even attempt homework, I'll have him attempt it in the a.m. He literally ran circles around the house when we got home. At times I would see him near the window and if I spoke he would growl at me and run off. If I had videotaped him tonight, he would be shocked when he returns to himself. His therapist wants him to use calming techniques so at night I always read a relaxation script before bed- he bounced on his bed. He usually loves them. I just got interrupted by him and finally gave him Benadryl because he is so wide awake and miserable. Any good strategies for helping to calm your kid so they can not feel so manic.

I'm trying to decide on the best way to track my son's behaviors, symptoms and reactions to meds. I thought maybe a spread sheet that I could then pull data from but wonder if anecdotal notes are better or a combo of the two. What has worked well for you? Also I feel like a police interrogator when my son comes home as so much of the behaviors are much more intense at school I have to question to kind of get a good sense of where he's at. To avoid that I was considering developing a little chart he could fill out daily rating tics, adhd, etc. He felt this was preferable to me bugging him. Obviously there are things he just doesn't know or realize are happening but often when a downward trend is starting he knows it first. Thoughts? Successes? Things that didn't work? thanks, Becky

Very cool! So interesting too that it can happen like that- so suddenly. I hope it continues! Becky ***Edit: Grrrr! sorry for double post. It froze up and looked like it didn't post ***

Very cool! So interesting how it can happen this way. I hope it continues! Becky

Mom WithOCDSon, Yeah, I don't know why they resist either. As a special educator, it is so annoying to put up with cuts or changes being made to my program when the higher ups don't even observe my program, don't understand it or have a concept of what my kids are like. Annoying how money is the only factor not the kids who should be the heart of it. And yeah, maybe it is my director trying to interpret things in her own way but I know she also had an education lawyer in to speak with our administrators regarding the changes in Section 504. I tried to just research it on my own and did find an amendment went into effect Jan. 2009 but don't see it limiting but rather broadening the definition of disability. If things get worse when ds switches to middles school next year, I'm not above taking him off meds in order to get him the services he needs. Off everything he might even qualify for an IEP.

Really nice job! You did a great job of providing info and answering the dr.'s protests against PANDAS.

10 yr DS dx w/ PANDAS in 2/10. Symptoms began in 7/09 included tics, anxiety, ADHD, behavior changes including irritability and aggression, sleep changes and suddenly "caught everything" in a kid who previously never seemed sick. Titers: 3/3/10 - ASO neg/ Anti DNAse B 480 5/10/10- ASO 229/ MP 2.26/ wrong AntiDNA run (flare up week previous to this) 5/24/10- Anti DNAse B 480 week of 5/24 strep exposure and flare up 5/27/10 ASO 237/ strep culture negative In March Matt was on amox HD for 10 days, switched to low dose> hives, penicillin>hives,zith>hives taken off prophylactic abx (he was supposed to remain on through June) for fear of allergy Left on sertraline for anxiety and guanfacine. Guanfacine for a week but tired all the time, seemed drugged switched to Risperidone for tics. In begininning of May he was referred to allergist (appt. is June 10th) and risperidone was doubled (total was.25mg) for tics for two weeks. No abx since allergy is still in question. Flare up last week, no abx given still due to allergy despite my begging and willingness to deal w/ consequences, but instead sertraline doubled to 50mg, risperidone doubled for 5 days, and Intuniv ER 1mg added for tics. He started that regimen on 5/29, he reported he felt better, school was better, noticeable change in ADHD and tics but not tired or overly medicated seeming. Reduced risperidone Monday. Tuesday at school tics increased so much he was unable to do school work since it was his writing hand. Today had a headache, said he felt weak and fell asleep in class, motrin didn't help, brought him home and he has been sleeping for the past few hours. He was embarrassed to even tell me about school yesterday, and unable to even report out about how he is feeling. Do I just need to hold out until abx question is solved or can anyone think of something else I should be doing for him or questions I should be asking the doctor. I hate for him to be over medicated but I don't even feel clear on that- he has not been consistently lethargic since med change. Ideas?

Just a word on 504 and the re-certification of it and how it affects our kids. I am a special ed. teacher in the district that my son attends. He was dx in Feb. of this year. I had known that he was being impacted- tics disrupting others so treated unfairly as a behavior problem, ADHD severely increases w/ flare ups, too anxious to even start work for fear he won't finish, etc. However, he had two good teachers who worked to add modifications into his day, provide OT tools to help reduce tics or at least impact on others. Dr. and therapist recommended that he get an IEP or 504. I too was leaning towards this as he goes to the middle school next year and I wanted something formal in place to mandate accommodations be made. An incident happened at school that infuriated me so I called the doctor that day and had her write up a letter documenting his dx and asking that she back me. I brought the letter to the school, asked that a 504 meeting be set up which we did have. He is NOT on a 504 but an informal "student support plan" , it falls under "response to intervention" but is not a true legal plan. Due to his diagnoses he meets the criteria of being under the legal protection of 504 but the only way to get an actual plan is to prove that the school is in fact discriminating against him so that he can not have the same rights as other average students. THe special ed director has come to staff meetings informing us that there should not be any 504 plans in the district because they are now only for those being discriminated against and since no one should be therefore no 504. It is not just to get accommodations anymore. Maybe other districts are treating this differently but this is what we have been told. I really thought as a special ed. teacher I would have no trouble getting him what he needed but I'm shut out too. The diagnosis isn't enough.

Grace, Nothing new here but will again reiterate that this forum is a goldmine of both information and caring helpful people. I don't make it on here as often as I'd like to BUT it is nice to know that when I'm unsure and trying to wade through what is the right thing to do for my son I can turn to others who understand. I'm always so amazed by the caring and incredibly knowledgeable people here willing to offer their time and advice to help others.

I am still constantly amazed by how awesome this site is and the parents are incredible. I posted a few days ago about my son's blood work only to find out what the results meant. I had not heard from doctors at all. Thanks to Buster who told me my son had had the wrong blood test I was able to call the doctor's office and knowledgeably explain to them what test was done, why it was wrong and what order we needed. The order was faxed to the hospital, we went for blood work and I was sure to question the tech about the test. THE WRONG TEST WAS ORDERED AGAIN! Thankfully she caught it and knew what they meant and so was willing to do antiDNAse B test but yikes my son almost needed blood drawn 3 times in order to get it right! If not for this board I wouldn't even have had the knowledge to get things straightened out for my DS. It is amazing how the real knowledge and education behind PANDAS is parents.

Buster, Thanks so much for your help. Now I get it about the two strep titers and the timelines of when they show a rise. I will add that to my PANDAS binder so I don't have to keep asking. The risperidone is for the tics to kind of smooth them out as you said. I was against it in the first place. I am a special ed. teacher of students with emotional disorders so typically at least 75% of my class is on Risperidal or it's generic each year. I have seen absolute horror stories with it- permanent tongue tremors so that speech therapy had to stop since there was nothing they could do for him after that and more. Our doctor said that studies have shown that only when you are at 1mg or above do you see such side effects. So I agreed with the 1/2 of .25mg since he was first on tenex and he was a zombie. Matt is 10 and is very intelligent as is the common PANDAS profile and he can really be quite insightful about this whole thing BUT only when in remission. Otherwise either the anxiety or the lack of attention make it pretty near impossible. I will request a new blood test. Our specialist says it is often hard to get the lab work through insurance when she orders it so she puts the requests through our pediatrician. This keeps him informed about Matt's progress BUT leads to mistakes such as this one with the blood work. Thankfully I have kind people such as you on this board to help me keep on top of what needs to be done for Matt. Thanks again for your help!

I have not gotten any answers. I got the test results from the hospital this past week since I like to have copies of everything. However, I have not heard from either of our dr.'s since these tests were run in May. I kind of wanted to have an idea of what sort of things I should even ask the doctor. My understanding was that our specialist asked our pedi. to get both titers done again. Is the anti DNA double a screening of sorts before the Anti DNAse B? (excuse my ignorance) On the first set it appeared that they screened for ASO, it was negative so my hospital didn't send it out for further testing and then I kind of assumed that the same held true for the antiDNA, since it came out negative then they didn't send it out to lab in VA for more involved testing. He did have a rapid strep test on 4/23 but it was negative and they didn't do a culture. I was not smart enough to insist on a culture but will know next time. My son had a sore throat and was congested so that is why I sought the strep test. I was told it was a cold. Within in a few days we had the flare up. The new blood work was ordered after seeing our specialist for our regularly scheduled follow up which happened to coincide with the exacerbation. So my questions: Did he get the wrong antiDNA test? should I be asking for the antiDNAse B to be done? Would you treat this or wait and watch? Due to the possible abx allergy all we did for exacerbation was increase risperidone to double normal dose. (normal is 1/2 of a .25mg tablet). We doubled for 2 weeks and then went to normal dose. Of course since reducing I've seen anxiety, tics, adhd, getting fixated on words so he repeats and repeats and seems not to hear you. We also resumed therapy at doctor's request but his anxiety and adhd are impacting the success of that. What are your thoughts on next steps?

I know there is some disagreement regarding the importance/ability to draw conclusions from the titers but I wonder if anyone can offer some insight on my son's results. He was first tested 3/3. Results were: ASO Screen: Negative DNAse- B antibody: 480 Tested again on 5/10. During a flare up. Results were: ASO Titer: 229 Anti DNA double: <1 Mycoplasma AB I: IgG: H 2.26 (ref. range <=.9) IgM: 390 (ref. range <770) We are in limbo as he appeared to have hives each time he had antibiotics. Mycoplasma was tested as dr. felt that instead of allergic reaction to abx it could instead be result of mycoplasma. He is seeing allergist next month in order to fully resolve that question.

My son's were at their bowling league yesterday and for some reason my 8 year old decided to educate the other kids there about his 10 year old brother's PANDAS. (Apparently, he too has taken up the family cause of educating others about PANDAS) His brother's most prevalent symptom is tics so he explained that PANDAS is "something that makes your body do things in doesn't want to" The other kid responded "you mean puberty?" My oldest and I had such a laugh and thought others could use one too. lol

Hmmm one more thing to consider as PANDAS related. My son just showed me a week or so ago how several of his toes turn all white at times or even parts do so you can see a clear line. I wouldn't have thought of PANDAS connection but am curious now.