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ma2ar2rm2

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Posts posted by ma2ar2rm2

  1. My son is having high dose IVIG this friday and Saturday July 13 and 14, 2012

     

    it's our 1st time doing IVIG.

     

    I would love to hear from all of you.. any advice for before and after? How long was recovery time for you all, was your child sick for long? How did the up and downs of it go weeks/months later? Was there much turning back the page with it??

    Just anything you think would be helpful for me to know..

     

    thanks.

  2. all my kids present differently.. my two with the dx of PANDAS my daughter biggest symptom was sensory where she couldn't wear her cloths cuz they were hurting her so bad to touch her.. she also had major fears and seperation anxeity.. no tics or anything like that.... My son had OCD checking and tapping major fears and intursive thoughts, eye blinking, head turning and throat clearning tics, then when he was exposed to MycoP it went into what looked like sydenham choriea movement and left him looking like a fish out of what..

     

    My youngest son who is not dx but I see it in him.. crys at a drop of a hat, has big time agression and moodieness everytime he is sick or everytime he loses a tooth.

     

    All three of them when symptoms are flared will have the big puplis.

     

    We have 3 boys 9, 11, & 12. Severe overnight dysfunction with the oldest boy. After much wasted time before hearing the word PANDAS. Found Dr L....she asked about the other 2 boys. We mentioned things that were very different than each other (one with night terrors and uncharacteristic baby talk and the other with head and vocal tics). She floored me when she said that 70% of her patients were sibblings and that they each present differently. She had us test them all and do cunningham's tests on all 3. Low and behold ....all 3! Oldest is complicated because he went untreated longer & has had several IVIGs but still a work in progress. Other 2 ( knock on wood) are steady with antibiotics alone.

     

    Linda

  3. about 3 1/2 years ago when my then 7 year old daughter she is 10 now was dx with PANDAS I was wondering the same thing.. she is #3 of 4 children and after reading all about PANDAS I started questioning if my others kids could have had it when they were younger, cuz alot of the symptoms they had over the years growing up.. My oldest dd who is 16 now when she was 3 had a blinking winking eye tick they dx it as seizure activity and gave her meds for it, but she also had the mood swings. My oldest son who was 9 at the time is 12 now.. showed classic PANDAS symptoms all though out his life starting with the bad night terrors, sensory issues with sounds as a toddler, then when he was 4 or 5 had a throat clearning tic that the doctors said was allergies and started him on all sort of allergy and asthma meds, he had OCD stuff to around 6 or 7 but I didn't know anything about OCD or fears of that sort.. all these things always happened when he was sick or there after and I always marked them off to something like he just doesn't feel well.. So after learning about PANDAS with my dd I mentioned it to my doctor and he blew it off.. NOT the best thing to do.... Because Last Sept 2011 my 2nd child my oldest son got sick, I thought it could be strep the rapid came back neg they didn't treat him.. two weeks later he had the biggest change in personality ever. Extream fears, and an eye blinking head turning and throat clearing tick.. all of it came on over night.. then started running a fever and he test Pos for strep.. He has been in a major excabation since then.. antibiotics helped a little, steroids helped alot, In Oct 2011 my oldest child had walking penomia and that my my son and my PANDAS daughter symptoms flare... incress of antibiotics helped my PANDAS dd but my son was left with full body tics/movements he couldn't sit or walk, he pretty much spent all day laying on the floor flopping around like a fish out of water.. Steroids burst and then a steroid taper brought him out of the worst of it and left him with just tremors in his hands and some fears. then my youngest son caught the flu in March.. and my oldest PANDAS son got a fever at that time and it brough back OCD tapping, and the hand shacking started non stop and he had big body jerking movements legs and arms flinging out.. incress of antibiotics and more steroids helped but he was left with the shaking of his hands and his head flinging back like every other min. We have also tried alot of medications they use for torettes but nothing is helping... only thing that helps is steroids.. We just got insurance approvel for the IVIG.. He is having it This Friday and Saturday July 13th and 14th.

     

    i guess my point is if you see symptoms of PANDAS and you already have one child dx with PANDAS I would say those symptoms mean your other child has it also... Our youngest child is 7 now and he too shows sings.. major agression and crying alot everytime he is sick, along with the dielated pupels He hasn't had any big time out break of it, like my two middle children have had where it changed their life and kept them from living it... but mild symptoms are there.. So right now anytime he shows any signs of being sick, we have him in the doctors asap getting him on antibiotics.

     

     

     

    Does anyone know if you have one child diagnosed with PANDAs, how common it is for a sibling to have PANDAS as well? We have focused on our DS 8 yrs old and he has had IVIG for PANDAS which so far has been successful, but our 10 yr old DS has some classic symptoms as well. OCD, trouble in school, but he's been diagnosed with ADHD and on Rx. Wondering if we shouldn't be looking for something else??? DS 10 is seldom ill, had night terrors when he was 2-3 yrs old-still doesn't sleep well but has adapted. Bed wetting until about age 7 and immature for his age.

     

    Just curious if PANDAS is common among siblings.....

    Thanks!

  4. It is my understanding that it should be weaned. I believe your body comes to rely on it and needs time to adjust to the loss - same as you'd taper an SSRI, tho I believe you can taper inositol more quickly. I tapered my son over the course of 3? weeks and my daughter over 2 weeks - however, she was on a much loser dose (2grams vs his 5 grams).

     

     

    Thank you.. I kind of figured that would be the case.. but I wasn't sure. He is on 4g a day at the moment.. 2g in the morning and 2g in the evening.. I wasn't sure how slowly to wean but today I dropped him to 1g in the morning and 1g in the evening.. not sure if that is too much or not.. but he seemed fine today.. might give him a few days at that befor lowing him again..

     

    thanks again.

  5. Hello I have a question about stopping Inositol... My son has been on it for 2 months without any problems at all, but he is starting a new medication and I would like to stop the inositol and let the new med see if it can help. But I didn't know if inositol is something you can just stop or do you need to wean off of it???? thank you for your help.

  6. when my son was in his 1st crisis we did 100mg one pill onces a day for 5 days next time we did a 3 weeks taper 80mg for 7days, 40mg for 7days and 20 mg for 7 days.

    With the 5 day burst we didn't start seeing results till day 5 and it lasted about 20days before symptoms started to show again.

     

    With the 3 week taper we started seeing results around day 5 again.. he was good the whole time on them and for 6 1/2 weeks off them... Then he got sick. :( he got sick on Wed of this week and all his big jerking and violent tic sort of movments came back full force.. I got him to the pedi that day because he was sick stomach hurting, feeling like throwing up, coughing, nose stuffed up and all the PANDAS symptoms flaring The pedi put him on 50mg of steroids one pill for 5 days.

    and when I got in contact with Dr T.. he put him back on treatment dose antibiotics for the next 10 days. so hopefully that will do the trick..

     

    Praying you get out of crisis quickly..

     

    What is the dosage you've done for steroid burst in crisis? Has it helped and how long did it take?

     

    I'm sure I know this, but my head is spinning with a crisis right now and I need info. TIA

  7. Just my opinion, but given her symptoms, starting out at 1 gram is too much too soon. I would back down on your DDs dose and start with half that for a few days, then work up. Even for your son, you're starting at a somewhat high dose. In the links I listed at the top of the thread, there's an article that discusses dosing and building up over a 6 week period. You can check that one for guidance.

     

    As an FYI - since I last posted on this thread, my daughter stopped taking inositol and switched to tryptophan. It is working much better for her.

     

    I never noticed any correlation between tics and inositol. What your son's symptoms suggest, to me, is that he may still have some sort of infection. He is on a very low dose of abx and that may not be enough. For my son, his last episode of tics (a year ago) was triggered by an aggressive lyme treatment. His body couldn't get rid of the toxins released by the dying bacteria and that triggered tics. When we changed treatment, his tics stopped. We have worked on a lot of detox. It sounds like there is still stuff that needs to be uncovered for your kids. Are you doing any additional testing?

     

    Thank you all for your responce.. I'm going to lower the dose with both of them and see how they do... and also go and read all the links you have listed at the top. As for additional testing.. they don't have anything ordered as of now. Dr T in New Jersery did find a doctor here in Ohio that he recomended who does all sort of testing and treat both antibiotics and bio med. I spoke with the office on the phone, but i can't make the appt yet.. They don't take insurance and right at this time I don't have the money to pay upfront.. my husband company closed down 10 months ago and he has yet to find another job so the 6 of us are still living off his unemployment check while he is looking for work. But my parents have offered to help out and our income tax check should becoming here in the next month...

     

    ONLY I haven't made up my mind which would be the next best step for my son. For my daughter I think the doc Dr T suggested would be best.. She is funtioning and living her life just with good days and bad days and I think the bio med route might be the way to go for her... but with my son.. I don't know which is my best opption. He has pretty much lost the last 7 months of his life and at this moment moving backwards..

     

    So i don't know if I should try more testing and the different bio meds and supplements or if I should do IVIG and see if we can get him out of the worst of this.... Any thoughts on this is welcomed also since I really don't know what is best..

  8. Hello.. I did a search for Inositol and found you all.. I have been reading alot of the thread about it, but most of them were posted years ago.. so I thought i would jump in here since it was more resent..

     

    I just started my two PANDAS children on Inositol this weekend..

     

    My 10 year old daughter has been dealing with PANDAS for 3 years dx 2 years ago and so far her only treatment has been daily antibiotics.. her symptoms were ocd(without to much C but alot of O) high anxeity, sepration anxeity, and big time sensory issues mostly with clothing. most all of this went away with antibiotics with mild symptoms flaring up everytime she is exposed to something.. mild symptoms is moody and crying alot.. a little more then mild symptoms when she herself get sick is the obessive thinking, and alot of other OCD stuff such as checking glasses forks, plates so on to see if they are dirty.. Only eating certin things.. fear of seeing the dark to the point of not wanting to go out and having to have the curtin closed just right so she can't see out at all. that sort of stuff.. She hasn't had any of the sensory stuff in 2 years until this week a little bit with being picky over her socks.

     

    My 12 year olds son came down with PANDAS just this fall.. His symptoms are OCD, high anxeity, and tic and movement disorder.. BAD Bad major movements disorder to the point where he hasn't been able to attend school since Oct.. We started working with Dr T in January of this year and with high dose antibiotics and steroids he got so much better.. He was at the point of not being able to sit up or walk, his body was flopping around like a fish out of water.. and his OCD had him hiding in a tent he made with his bed where he was behind blankets 24/7 afraid to come out for weeks.. after the 5 day steroid burst and antibiotics he was back to his happy self with just a major fear of school remaining as far as the OCD/anxeity of it.. and as for the movements and tics.. everything went away except for a shaking in his hands and head which were going on pretty much non stop except for when he was sleeping.. So we did a 21 day steroid taper and brought him down to a maintance dose of antibiotics which is 250mg of azithro every other day he was back to his normal self thought wise, mood wise except for his fear of school(but he fights though it for his tutoring but afriad to go to the school building and letting any of the kids his age other then his friends see him with the shaking) the shaking itself was no longer none stop it was still there every day but he could go hours with out it happening.. which was such a major improvement... but he has been off of it for 6 weeks now and 2 1/2 3 weeks ago the shaking started getting worse again, and some of the flinging of his arms, legs and head jerking back started happening again... his anxeity over stuff is starting to get worse, he has even started crying over things again...

     

    now since both of my PANDAS children are going down hill at the time.. i don't know for my son if it is the effect of the steroids has worn off or for my daughter that she was exposed to strep by her best friend.. OR of for both of them that my youngest non PANDAS son and I both test pos for the flu on March 9, 2012 and they are reacting to that... I don't know what the reason is..

     

    but I have been reading about inosital anyways and thought I would give it a shot for them..

    My daughter is 10 and 60lbs and I started her friday night with 1g (1/4tsp of the powder) once a day figured i would do that for a week. but since starting it she has been complaining of her stomach hurting and she has had diareah each day.

     

    For my son who is 12 years old and 197lbs(big boy to start but steroids for a month and not being able to be active for the last 7 months has not helped at all) I started him on 2g a day.. but we didnt' start him until yesterday cuz he wasn't home on friday.. he said his stomic feels fine, and he isn't having issues with diareah... but his shaking got worse today and his head was flinging back alot.. so much more then yesterday.

     

    I guess my question is.. does anyone have advice for me as I start this.. is there anything I should know.. My son is on the azithro like i mentioned and also 1 1/2mg of tenex a day.. my daugher just on the antibiotic..

     

    has anyone heard if Inositol can make tics and movements worse??

     

    Thank you for your help and all comments are welcome.

  9.  

     

    Great explanation. Let us not forget, however, that the biggest factor at play here is a compromised BBB.

     

    Strep infections are just about as common as colds and flu, yet only a very few develop PANDAS. Why? It's pretty obvious to me that when the average person gets Strep, the BBB remains intact and the antibodies never gain access to the basal ganglia and the auto-immune response is never developed. Theoretically (and I think practically as well), once the integrity of the BBB is restored PANDAS goes away completely.

     

    You can't eradicate Strep and some people are genetically coded to develop PANDAS once and only if the antibodies cross the BBB. If we could pick one thing to fix and that one thing was preventing compromises in the BBB, PANDAS could be cured or prevented in every case.

     

    As always, I'm willing to consider information to the contrary. This is the way I see it.

     

    This makes so much sences... if those antibodies couldn't cross the BBB we wouldn't have any problem... Now how to fix that???

  10.  

    IVIg goes further to get the child back to 100% or as close as possible. As I said, its healing effects are stronger and longer-lasting.

     

    To me, my son isn't completely functional unless he's 90%+. Anything less than that and he still has enough ups and downs and difficulty focusing to keep him away from school and other activities from time to time. That, to me, is unacceptable. At 90%+ (really 95%+), he is able to manage it pretty much 100%. We won't stop until that becomes the new baseline and my gut tells me he will eventually get to 99-100%.

     

    In your case, I would definitely do IVIg if the abx aren't consistently bringing her back to 95%+.

     

    Well to this point the abx has always got her back there.. until she comes in contact with it again, or gets sick again herself.. She hasn't been off the antibiotic since we found out she had PANDAS.. but it doesn't seem to be enough to keep contact(exposer) symptoms away.. and she herself got sick twice while on the antibiotic.. not with strep but she had an abscessed tooth that sent her into a big flare, and this latest flare she is sick.. with what the doctors say is Croup. but she is still in a flare.. so I'm pretty such she has moved from PANDAS to PITAND.. UNLESS.. the abscess was caused by a form a strep.. and unless the doctor has missed the strep in calling this Croup. We did not do blood work with the Croup.. but we did run her ASO and stuff with the abscess and they were in the normal range..

     

    I guess this line "aren't consistenly bringing her back" is sticking with me.. I am sick of bringing her back. would IVIG keep me from having to bring her back... or would the IVIG still only give me a few weeks/months of normal before she is exposed or sick again?? I'm sure there is no 100% answer to this.. I'm just thinking outloud here..

  11. This just still goes back to my big question----maybe the infections are cleared, and it's the autoimmune issue at hand. The immune system thinks the brain is an antigen and keeps making auto-antibodies, because the brain isn't going anywhere....and it's these autoantibodies that cause the issues and symptoms, right??

    That is a very interessting thought. hmmmmmm but if the brain is always under attack. how do we account for the good days, weeks, months of no symptoms?? It does make sences in a logical way that the brain isn't going away so the antibodies are always there.. but so far with PANDAS there doesn't seem to be much logic in it LOL.. stuff happens that doesn't seem like it should be stuff doesn't happen that seems like it shouldn't ~sigh~

  12. That's why we did IVIG...we were drastically better (versus crisis situation anorexia in 2nd grade) with full-strength long term antibiotics...but dd reacted to non-strep illnesses and strep exposure...and we could see her baseline was changing.

    How long ago has it been since you did the IVIG and how is your dd doing these days.. Does she still get symptoms to exposure or non strep illnesses? Did it take 1, 2 or more IVIG treatments???

  13. Everyone that knows me knows I am a HUGE proponent of IVIG, although I do recognize the risks and don't fault anyone for being cautious. I think most of the risks stem from the potential for a bad reaction or blood-borne infection and I'm not aware of any cases personally where IVIG made PANDAS permanently worse. I'm sure they're out there (as it seems just about anything is possible with this disease), but I have to think it would be very rare. There is a test that can be done before to rule out allergic reactions.

     

    I do believe that the longer those PANDAS pathways and channels are left open, the harder they are to close and there are plenty on here who have multiple IVIG's with slow progress. The sooner, the better with IVIG, if you ask me.

     

    If one of my other children were to be diagnosed, I would push for HD abx and oral steroids first, but if they weren't back to 80% of their baseline within a month, I wouldn't hesitate to go to IVIG. I think the benefits of IVIG are clearly stronger, longer-lasting, and more immuno-modulating (corrective). Many even question if abx have immuno-modulating effects, although I personally believe they do at high-enough doses.

    What would your oppion be if your child with in a month of antibiotic was at 90% but then got sick again and an incress are antibiotic took her back to 90% only a few months later got sick again and went back down to 75%

    I think my dd since 1st starting to treat for PANDAS with antibiotics back in May 2010 keeps jumping up and down between 75% to 95% I can't say she ever really got 100% better cuz everytime she is exposed to something she gets mild symptoms.. but even at that time I say she is about 85 to 90% but when she gets sick.. it just goes down hill.

     

    Would IVIG stop that??? could she get to 99 or 100% with IVIG and stay there... or would it be like it is on the antibiotic where when exposed she gets mild symptoms and when she gets sick it gets bad???

    This is my question...

     

    That being said.. her immunologist told me she would be willing to treat her with IVIG if I wanted to go that route(saw this doctor today) Though she has never used IVIG for PANDAS my dd is her 1st PANDAS child.. she said she would want to see what Dr K and Dr C and the others are doing.. but she would be willing to do it for us...

     

    Now I don't know what to do...

  14. I have been wondering alot of the same things. We have been dealing with the PANDAS symptoms for 2 years.. but didn't know it was PANDAS until 10 months ago.. at which time they started her on antibiotic and she has been on them ever since.. with in a month of starting the antibiotic she was 99% better.. only having mild symptoms when exposed to someone sick. Then she got an infection in Oct 2010 in the form of an abscessed tooth(which the dentist and doctors have told me most abcessed are a form of strep)Which sent her into a big PANDAS flare up for the whole month of Oct and most of Nov.. we incressed the antibiotic(we had moved her down to mantanince dose) and had the dental work done that was needed.. by the end of Nov and all of Dec 2010 she was back at 99% well again..

     

    In Jan 4 of the 6 of us in our family caught strep.. This had her having symptoms of PANDAS for two weeks. but after that she did good 90 to 95% better for the end of Jan and 1st part of Feb, then 99% better at the end of Feb..

     

    ONLY for her to get sick This month. Last tuesday he symptoms came back and has been getting worse and worse by the day. Last Thursday she started running a fever and was coughing her head off non stop.. So I took her into the doctors on Friday and they said she has Croup.. They did not increse her antibiotic but did start her on a 5 day treatment of steroids for the croup... since i always heard about Steroids helping with PANDAS.. I had great hopes that this would help both with the Croup and also with the PANDAS flare she seems to be in... but we took the last dose of steroids yesterday morning... and she is not only still coughing but the PANDAS symptoms are worse. :(

     

     

    So I am back to thinking about IVIG... but I have so many questions...

     

    One is every time my dd has been in a big flare since starting treatment for PANDAS has been when she herself is sick she gets mild emotion/mood symptoms when she is exposed to something.. but the big OCD, anxeity and fears and even bigger emotion adn mood symptoms like crying for hours and hours and not sleeping or letting me leave a room type stuff only comes when she herself has been sick. And what I have found to this point is that it takes an incresse of her antibiotic and then about 4 weeks for her to be back to normal.

     

    I'm wondering what would IVIG do better then the antibiotic... everyone is always talking about the wonders of IVIG and how it is the best for PANDAS. but then i read of it taking about 3 to 4 weeks for the benifits of the IVIG to start showing.. read today about a child who had it done 4 weeks ago and yet today would be only day 3 for there child to be having good days... so 4 weeks to see results with IVIG and 4 weeks to be symptom free with antibiotics.

     

    Then I have seen kids post IVIG who are still having the mild symptoms when exposed to strep.. and then those who end up with symptoms of PANDAS when they become sick.. again... So I don't really understand what is it about IVIG that is to be better then the antibiotic..

     

    PLEASE don't take this post as me bashing IVIG in any ways.. I really know nothing about IVIG and the reason I'm posting at all is I want to know more.. because I"m thinking about if this is something I should be doing for my dd.

  15. Thank you Nancy.. this has been very helpful for me as well.. my DD has the rest of this year and next year befor she moves up to the next school where they team teach with about 4 or 5 teacher for two years and then into the Jr High and High school..

    I guess I didn't think past the elementary stage to look at how this might not work as well when she gets older..

    Oh how I pray PANDAS is under control and may never come back by then.. but I will keep the IEP in mind for her as well as her 504 we already have..

    Thank you

     

     

     

    In our experience, a 504 seems adequate for elementary school grades because, usually, your child is in one classroom most of the time, with the exception, maybe of fine arts or phys ed, so that one teacher just needs to be on the same page in terms of accommodations, techniques, etc. But once you get up into junior high and/or high school, where the kid is changing classes every 40 to 50 minutes and may have a team of as many as 7 or 8 teachers, assuming he still needs some significant assistance and accommodations during exacerbations, the IEP has made things a lot easier for us. The case-worker serves as our primary point of contact so, say, when he's moving into a period of exacerbation and we need to call upon an increase in his accommodations, all I have to do is get in touch with her, and it's her job to circle the team, fill them in, help DS advocate for his needs, etc. It really simplifies the process and gives you a "go-to" person.

  16. Some days I just want to throw in the towel and homeschool, just to take the pressure off both her and me.... :(

     

    I know that feeling well.. and I really really looked into it and wanted to do it.. not so much for just taking hte pressure off but because it would mean she comes in contact with less illnesses which means she would have less symptoms.. ~sigh~

     

    Only when my dd isn't having a symptom day... School is her favorite thing.. she loves everything about it.. the work her friends... she loves learning and loves showing off her good grades and loves playing and working with her friends so much... that the doctors all think at this point it would do more harm then good metally to take her away from school because of PANDAS..

     

    though on symptom days I have had her sitting in my living room crying her eyes out, throwing her school books across the room begging me never to send her back there ever again and asking if she oculd be home schooled.. ~sigh~

  17. It took some time but I did push and we got a 504 for my dd who is in 3rd grade.. up until this point she was a straight A student.. teacher pet...perfect kid... sort of student.. no problems at all.. except that she was missing alot of school... that was because I kept her home when she was having melt downs and the school didn't see it..

    After finding out what we were dealing with PANDAS.. I went for the 504..

    they didn't feel she needed a IEP.. but agreeded with me that she needed the 504..

     

    I took the approch of laying it all out there for them and then asking them to help me protect her brain and also help me to not let this affect her school wise, grade wise..

     

    I ended up needing two notes from her doctor.. the 1st one said "This letter is to certify that she is under treatment for the PANDAS Syndrome and may need some accommodation do to the psychiatric repercussions of the syndrome"

    The 2nd note I ended up getting from the doctor said "Please excuse from school during periods of significant strep outbreak"

     

    we set her 504 up covering two things.. 1) prevention and 2)when symptoms come..

     

    on the prevention part.. she gets to have a water bottle with her so she doesn't have to drink out of the fountin, I asked for hand sanatizer at her desk and her to be able to use disinfecting wipes.. They agreed to all that.. PLUS went a step above.. her whole class when they come into the class room at the start of the day or after they had been outside or to gym, music.. whatever.. the teacher as they walk in the room puts a bit of hand sanatizer on each kid as they enter.. Then since the school would NOT agree to cleaning her class room daily(they do it about once a week if we are lucky)they let me provide the disinfecting wipes.. and at the end of the day.. the kids in her class wipes down all the desk and hard surfaces.

     

    Also in the line of prevention.. A note went home with every student at the school that read.

    "Parents and Guardians of........... school

    A child in our school has been diagnosed with P.A.N.D.A.S. (Peiatric Autoimmune Disorder Associated with Streptoccocci) When a child with P.A.N.D.A.S. contracts or comes into contact with Strep, their body produces antibodies to the bacteria that attack their brain and cause inflammation.. The swelling in their brain can have dramatic short and long term consequences for the child.

     

    It is very important that we limit Strep exposure as much a spossible in school. If your child is sick we ask that you please keep them home. If your child is diagnosed with Strep infection please contract the school so that we may inform the child's parents immediately.

    Thank you..

    and the princible signed it"

     

    Also along the prervention lines..

    When someone calls in with strep.. the school contacts me to let me know they don't tell me who just tell me there is strep in the school.. and which grade it was in.. I can make up my mind what I want to do from there.. but what I have found is that normally.. my dd has been having symptoms or about two days before I hear from the school that someone has called in with strep. so I don't know how helpful this really is.. but it is nice to know still.

     

    IF there are 2 or more cases of strep in my daughters class room... I can pull her out for how ever long I feel is needed and she can do her work from home..

     

    If there are 5 or more known cases of strep in the school I can do the same..(though that hasn't happened) I'm sure there has been.. but I don't think parents call it into the school even though we asked them too.

     

    Now for symptoms days..

    DD is one who seems to respond well to Motrin if the symptoms are mild.. moodiness, crying, getting short with those around her.. sort of things a dose of Motrin normally will put an end to all of that.. So if her teacher sees she is having mild symptoms and they seem to be distracting dd from her school work.. the teacher will call me and I'll come give her motrin.. IF DD can feel the obsessive thoughts an can tell everything is bugging her and she is able to say to her teacher that she is not feeling right.. the teacher will call me and I'll either come get her or I'll give her some motrin..

    If her symptoms are bad before school and I can tell she isnt' going to get anything out of being there that day.. I can keep her home when she is having symptoms and it doesn't count agaist her..

     

    she is given extra time to do her work or her make up work if she is having symptoms..

     

    I did not go for being able to leave the room for memtal breakes or anything like that.. what I have watched with my dd is if she is having symptoms she can try to fight though them if they are mild.. but even on mild symptom days.. her work suffers.. up until PANDAS she never got anything lower then an A on anything.. She reads two grade levels above her grade and she is good at school, loves school loves her friends.. When symptoms are there.. she can read the words but that is all they are words, she doesn't understand any of it and they have no meaning to her.. on symptom days she has brought home anywhere from C to F's.. when I saw that happening.. I talked with her teacher who told me if I see those on symptoms days if it's home work it's no big deal but if it's test and stuff let her know and she can make it up on a non symptom day..

    This got me and the school thinking... if things are not clicking in her brain well at all on symptom days how much is she really getting out of what is being taught.. so on mild symptom days I'll do motrin and send her to school.. but if she is bad I don't bother.. and it doesnt' count agaist her at all.

     

    I really didn't want her grades to drop due to this... but even with what we are doing... they have dropped.. She bought her her 1st B's this year on report cards...

     

    But at least with the 504 in place.. I feel she is able to be protected school wise if she ends up in a major flare, and we are doing what we all can for mild symptoms and trying to limit the strep she come in contact with.

    Hi Everyone,

     

    Just got back from dd's preschool/kindergarten (she's in K) and a talk with the marvelous director. While really trying to be helpful and completely well meaning I don't think she grasps the seriousness of the situation. The purpose of our talk was to find out how they could support us and to encourage us to get an eval from the school district for an IEP or 504 (medical) plan for when dd heads to 1st grade next year.

     

    She kept talking about how the woman in our district who does the evaluations is really great and that they'd be able to put a really supportive plan into place for when, for example, dd has a day with low frustration tolerance (outbursts, agressive, name calling, seperation issues). I just kept saying, it's not like a regular behavior issue, it's not psychological or even developmentally based. I just kept saying: "a medical issue that looks behavioral" and "anger, defiance and emotional issues with a medical cause." She kept asking me what the doctors say about managing this condition...I told her that basically no doctor really understands it beyond, maybe, what treatment to try next and even that is still up in the air. I explained the BBB and the auto-antibodies that attack the brain. I said, this is not an excuse but it's a reason.

     

    She finally got the picture when I told her that PANDAS kids often end up with IVIG and when I explained the procedure to her her eyes widened and she sort of slumped in her chair. I think that sometimes graphic is better. I also said, if a kid has a broken leg you don't say "come on! get in the race, you can do it!" Nope, you know not to push them to do something they are unable to do. I said, if a kid had a different autoimmune disorder that attacked their blood instead of the brain, then you might be able to set up a regular schedule for school, but as it is right now, I can't predict from day to day whether dd should go to school or not. I don't care if it's easier for the teachers to plan. If she's unable to go to school, I'm not even going to try. Also, a big one for me, if a kid's brain is ADHD/ODD foggy b/c of PANDAS you can't use regular behavior techniques to help them "learn to cope" and be more successful in the classroom. MEDICAL CONDITION. From my experience, when dd is in the middle of an episode, even if it is relatively mild, I can't reason with her. Sometimes I can distract, but if they are having to do it all morning long with her then it's not even worth sending her to school.

     

    Soooo...sorry for the rant, but I am wondering what your experiences have been with IEPs or 504's. Since, as I was discussing with the school director, the medical profession (at least in my limited experience) can't really tell you what to expect or how to explain it to others, especially school, what kind of advice can you offer me?

     

    Gratefully,

     

    Malke

  18. WE have minor immune stuff going on - but minor - at least not major enough for insurance to consider it an issue. we have immunologist working on one last autoimmune thing - ds doesn't make pneumoniae titers - but since he doens't get pneumonia or bronchitis, it ins't considered an issue. Normal people would revax and see how child reacts - but I'm to chicken to vaccinate.

     

    My PANDAS dd 9yrs old.. has this same thing going on.. We went to an immunologist and had the immune testing done end of Dec.. They said she wasn't making the S pneumonie IGgs. I was scared out of my mind to revax her for them. So worried I was going to send us back into PANDAS ###### and lose her again like we did last spring. But the immunologist told me she couldn't promiss anything but that if her immune system wasn't working correctly that could cause the auto immune responce which PANDAS is.. and that if they got it working correctly there is a chance that it would stop doing the auto immune responce.. And since the s. Pneumo IGg antibodies fight agaist 23 differnt bacterrias

    that totally explained all her reaccuring infections.. including strep, ear infections, mono.. ect.

     

    Like I said I was so worried about revaxing but either way I went it was a risk.. Do I revax and sent her off into a major flare of PANDAS.. or what if I didn't revax and things never got fixed...

     

    I took the gamble and revaxed.. we had about 2 maybe 3 weeks of mild PANDAS symptoms after doing it.. but she came out of it without having to up her antibiotic or doing anything different then what we have been doing for the last 9 months and that is daily antibiotics.

     

    We are waiting now on the next step of this immune stuff.. We had another lab taken on to see if her immune system has responded.. We go back in to find out the results on Feb 18,11.

     

     

    As far as not having high ASO ... my dd falls into that group also... All her PANDAS stuff started when she had Mono and for about 15 months I let it go.. thinking she was acting different because she was still just recovering from Mono.. her sysmptoms would come and go... be mild then get over the top though out that time.. Also in those 15 months... she had 2 sinuse infections,an absessed tooth 3 ear infections and 2 strep infections.. each time she was sick.. the PANDAS would get worse(though I had never heard of PANDAS at the time... Last year around this time in March 2011 she was really bad again... this time I took her to the doctors,I was crying my eyes out to him.. saying something is wrong with her and I can't blame it on the mono any longer.. she was a mess and I didn't know what to do.. He saw her said she needed a child psychiatrist.. He thought she had OCD, anixity and a conversion disorder. Her biggest thing at the time was sensory issues with her cloths hurting her really bad.. she would wear things about 4 or 5 sizes too big and still have major fits and melt downs that they were too tight and hurting her.. The doctor thought she was taking her fears and turning them into the phyical symptom.. So we got on a waiting list.. and while waiting.. the very next month.. my dd well for a lack of a better way to describe it went out of her mind she couldn't sleep, she couldn't put cloths on.. she sat naked in the middle of my bed crying her eyes out for just about 48 hours.. screaming her head off that anything that touched her was hurting her.. the only time she slept was when she passed out and fell over, then she would wake up again crying that the sheets touching her was killing her.. She also started running a fever.. When we got her to the doctors it took 4 adults to hold her down(she at the time was like 45 pounds soak and wet)and one to pry her mouth open to get a strep swab.. It came back post. for strep..

     

    it was at that time that her doctor told me I have good news and bad news.. Good news is I no longer think she has a conversion disorder... bad news is I think she has PANDAS... He started her on the antibiotic.. after the 1st dose she was sooooooooooo much better... after 24 hours she was like 40% better.. after 2 days she was like 75% better.. by the end of the 10 days she was 90% better... by a month on antibiotics she was 99.9% better and back to her normal self.. where she stayed until mild of step when she got another infection. and she had a big flare again.. nothing like last spring but still bad leaving her crying for hours and hours on end and having alot of the other PANDAS symptoms.. At that time we checked her ASO and all of that.. and everything came back normal.. at the time we didn't know there was an infection.. just knew she was bad again and that is why they did the labs.. about two weeks after the labs.. I saw she had a big ball of puss on her gums.. it was another absecces... we upped her antibiotic and had all the dental work done.. and boom.. back her 99% normal again... we have yet to get to 100% but 99% is good.

     

    I have chattered on so much in this.. that I have forgot what my point was... sorry...

    but her ASO and numbers don't show high but she does have PANDAS.. and she also has something minor showing up on immune testing..

  19. wonderful advice.. My daughter reacts when exposed to strep.. I call her the strep detector.. she seems to get symptoms about 2 or 3 days before I find out that someone she was around test pos for strep.. This last time it was myself and my older son. My PANDAS daughter started having symptoms for 2 days that is what made me even think to get my son tested for strep when all he was complaining about was his tummy hurting, no fever no sore throat, just his head hurt and his belly was killing him.. got to the doctor and his throat was all red and they did a swab and it came back pos for strep. Since I was not feeling well myself with the head and belly thing I went to the doc the very next day and sure enough I had strep also.. BUT it was my PANDAS dd reaction and symptoms that made me even think that my son and I could have strep.

     

    *BAM* another thought just hit me...make sure nobody else at your house has strep (many people have asymptomatic strep so you can't just rely on symptoms) because if your daughter got worse again after improving it may mean she was re-exposed. Because PANDAS is caused by the antibodies to strep (rather than the strep itself), and even just exposure to strep causes the immune system to produce antibodies its worth seeing if other people in the home (who were exposed to your daughter's strep before it was treated) may be triggering a relapse.

  20. Mono was what triggered my dd's PANDAS.. I know her doctor says it was only strep.. but all the changes I saw in her like things hurting her when they touched her like clothing and blankets, and being extreamly moody and crying alot all happened with the mono.. but when she got strep on top of it, things just got that much worse and all the fear and anxeity kicked in. but when she caught the 2nd strep infection and all heck broke loose on her is when they called it PANDAS and started treating her..

    Mono of Feb 2009, June 2009 was strep and then Spring 2010 was when all heck broke loose and they called it PANDAS.. though we had been dealing with symptoms on and off since Feb 2009.

     

    Seems like pandas to me....

    you can slip back a little.and hopefully keep progressing forward...nothing is really a straight line around here...

    you may also have to try different abx..too soon to tell..

    .with my new panda, tics remitted in 9 days as this was his first episode....we had 3 days tic free..and then got slammed with mono...don't know how long that one will take to remit...my doc told me months for mono....which i figured, but was nice to hear from a professional...but makes me extremely sad.

     

    ps..mono may have been the trigger all along...as he never had strep before, that i can note...and his first strep was 6 weeks prior to mono..and i think it can take that long to get igms and symptoms

    strep and mono have a high co-infection rate

    more in...if you have mono you have strep too...not so much the other direction

  21. Thank you Emerson

    Reading your post always give me a better understanding of what my daughter might be feeling, even when she is not willing to talk about it herself. Thank you.

     

     

    Just thought I'd chime in.

     

    With the symptom explosion in 06 holding it in wasn't exactly possible. But as I got more used to the twitches & compulsions & everything, it became a lot easier. I can't remember who it was that I talked to about this, but I tried my best to make it clear that "holding it in" & "being okay" at school are two totally different things. Don't think anyone's implying that, just had to say it. By the time 07/junior high rolled around, I was pro at holding it in. You can tense your muscles hard enough to keep yourself from twitching. It hurts like #### though. You can substitute little compulsions for big ones. When I want to pace, I play with my hair like a MANIAC instead. I used to pull it all out, but I don't do that nearly as often anymore.

     

    Everyone's kind of already said it, but it really is just like opening a floodgate once all of that pent up stuff gets let out. It's not even a comfort thing. It's not like I don't want to show people that side of myself at school, but I don't care at home so I just let my freak flag fly... If I had something to do after school it didn't matter where I was or who I was with. I would blow up. In the end holding it in isn't necessarily a BAD thing so long as they understand what they're doing. It's really just a personal choice. Would you rather have a more "normal" school experience even if you have to pay the consequences afterwards, or would you rather have consistent, more manageable symptoms even if you feel a little out of place at school? When I started high school I chose the latter & I think it's been beneficial.

  22. Dedee, I would tell you to have your husband read this thread so you can say, "see?", but unfortunately he will most likely say, "those women are crazy, don't read that stuff!". I know the pandas-dad too well.

     

     

    Hahaha... though it's not funny.. but really what is it with the PANDAS dad... My husband will not really read anything and learn, he just listens to what I read and tell him about... and then he doesn't undestand what and why she does what she does.. and Just this week I looked at him and said.. you know its a disability really, she isn't going to responde and act like you think a normal child would no matter how normal she seems at times.. So he got mad at me for "saying she wasn't normal" UGH... and ~sigh~ but he is slowing coming around.

  23. My mom and dad has dealt with my dd in melt down form while she was at there house but there house is her 2nd home.. So they understand my IL's would not want her back if they saw this.. and my MIL has asked me over and over if I think maybe she could be just putting on a show to get her way... Honestly I think if I hear that one more time I might lose my cool with my MIL..

    but I have just excepted that unless people are going though this they are not going to understand it..

     

    But the whole falling apart infront of mom/dad thing is so crazy..

    my dd spent the night at my parents house on saturday, when she left my house I warrened my mom and dad that she was having symtpoms all day saturday.. but at my parents house she was perfect no moodiness no crying... Then sunday night her dad and I went to watch the football game at my parents house and have dinner.. with in 15 mins of me being there she was having symptoms..

    I wasn't sure if it was just me and my husband being there... or if maybe my strep isn't gone yet.. I had strep throat on Jan 8,2011 and she reacted to it.. I did a zpack but never went back to the doctor for any sort of testing to see if it was gone. but since a few days before I tested Pos She has been having symptoms everytime she is around me... I didn't think it was me until lastnight when I was told she had been great for over 24 hours until 15 mins after I walked in the door..

     

    So was it just seeing mom or am I setting off some sort of PANDAS trigger in her since I had strep??

     

     

     

    I have explained time and time again to my inlaws that this is typical behavior with pandas, to fall apart only with mommy/daddy. They still to this day do not believe that is possible and that I have spoiled my boys rotten. This is not a battle I will win and have come to realize that to the outside world we look like failures for not having control over our children when they are perfectly behaved everywhere else :wacko:

     

    Yes there are times I want the kid to lose it at my in-laws to they don't have to act so self-righteous, but the bottom line is that then he would not be welcome at their house!!!

  24. OH YES!!!!!!!!!!!!!!!!!!

    OMGoodness Yes......

     

    BTW my dd is in a major nasty mood at the moment due to a flare in PANDAS symptoms..

    She is crying and moody and irritable, and having night time fears... but has gone to school every day, played nicely with her friends... but it seems the minute the bell rings she just lets loose.. and UGH...

    Love her dearly and I understand it is the PANDAS and not her because when she is not in a flare she is the sweetest nicest little girl every willing to bend over backwards to be kind and loveing.

     

    but holy cow.. right now she is screaming at her brothers that she hates them and then breaking into tears about how everyone is mean to her.

     

    I really think it is she is feeling the symptoms though the school day, but fighting her hardest not to let them take her over at school, she gets embarrassed and doesn't want her friends to see her acting in any different way.. but once at home around those she trust to love her no matter what she stops fighting and gives in.. or something like that.. or at least that is how I see it.. but boy has the last few days been hard at home for all of us.

    I know I should be thankful, and I am. Ian is fine at school. He sometimes has trouble focusing and needs some direction ro help with school work. He is in 2nd grade. But he is fine in every other way. He listens, is polite, socially doing very well in school, etc. yet at home he lets loose. I read so many posts about kids that can't go to school and it breaks my heart. I am thankful he can. I hope he can keep on. He, and I, need the break. But it made me wonder how many kids do fine in school, but fall apart at home.

     

    Lisa

  25. when I 1st took my dd to the Dr for what was going on with her(I had never heard of PANDAS) her doctor told me what was going on with her was OCD, anxeity with a conversion disorder. What her biggest symptom was was like a sensory issue where her clothing were hurting her, everything that touched her was hurting her and putting her in pain. A few weeks after I took her in and that is what the doctor told me, All heck broke loose with her.. She sat naked on my bed arms curled around her knees rocking back and forth crying her eyes out in pain. She couldn't sleep because when she laid down on the bed even just the sheets touching her would hurt her. two or three days into all heck breaking lose she tested Pos for strep throat..

    And that is when the doctor told me he had good news and bad news.. Good news was he no longer thought this was a conversion disorder but that he thought what she had was PANDAS..

    That was the 1st time I had ever heard of PANDAS.

     

    He started the antibiotic treatment and all those sensory or conversion or whatever it was issues went away.

    it took longer with the OCD(mostly the obessive thinking) and anxeity to go away.. she was alot better..

     

    But dang it all.. She is in a big flare at the moment.. but the stuff hurting her has never came back.

     

    Lately several leading Dr's and several PANDAS parents are reporting their Dr's and psychiatrists and neurologists are seeing a correlation between PANDAS after strep and a reaction in the body called Conversion Disorder where the mind plays games on them and they are not able to walk or they may loose muscle control or stop eating or can't stop bark. it causes the brain to take over and make your body have compulsions and can even make you think you are blind and can't walk..and so on..it's real to the person but there is nothing really wrong with their body..it is a mental thing. It goes along with PANDAS..and a lot of Parents do not know this..and more and more children are having it..do some research on it..help spread the word on this because these kids that we think have just tics and OCD and compulsions are having this too..and it can be helped and finding the key to helping them is getting to know what is going on with them and letting them know this is ok and real and they can help control this.. Kids are not able to walk because of this and PT can help a lot with it..they loose so much muscle control..Please check it out..might help you are someone else you know.See More If anyone has access to this article I think it would be very helpful to see the connection of PANDAS and Conversion.

     

    What is Conversion Disorder and How Can You Cope? - Associated Content from Yahoo! - associatedcontent

     

    www.associatedcontent.com

     

    Conversion disorder unfortunately affects children all over the world. It is defined as a type of conditions that has altered or complete loss of physical function.

     

    Prospective identification and treatment of children with pediatric autoimmune ...... PANDAS and paroxysms: a case of conversion disorder? J Child Adolesc Psychopharmacol. 2008 Feb;18(1):109-15. Kuluva J, Hirsch S, Coffey B.

     

    NYU Child Study Center, New York, NY 10016, USA. coffeb01@med.nyu.edu

     

    PMID: 18294094 [PubMed - indexed for MEDLINE]

     

     

    http://www.ncbi.nlm.nih.gov/pubmed/18294094?dopt=Abstract

     

    http://www.medhelp.org/posts/Child-Behavior/Conversion-disorder/show/463076 Conversion and PANDAS in medhelp

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