smartyjones

curious PowPow - do you think someone should be tested for AE if pandas treatment seems to be not working or stalling? how would one know in the beginning of diagnosis? or do you think everyone suspected for pandas should be tested for AE? thanks.

so - how far am I to push things at school? I am trying really hard to not be "that mom". ds12, 6th grade, had some troublesome grades that I asked him to talk with teacher about. backstory - this is my 'mild' child, who may have had social anxiety issues regardless of pandas. he has trouble asking for help from adults, standing up for himself, and finding solutions to problems if in a sticky situation. we have spoken with his homeroom teacher about this and are working on giving him support and help him learn how to handle these situations. he does not have a 504. although had a problem last year - but we were able to work through it with great staff. I have been extremely happy with this school and proactive approach for both children -- until now. we have had some back and forth with a non-response to ds's email from teacher, then I got involved. in one week, he seems to have gone from teacher 'not knowing there was a problem' to him having had instances of being 'extremely rude' and 'engineering the downfall of a group project that needed to be redone' - (that his grade is 10/10), and refusing to do work - not that he just done those, that she just discussed it. they are supposed to be moving him out of this class b/c it seems apparent to everyone that he and teacher are at odds. that's fine with me b/c he also is frustrated with computers in that class that are subpar. really, likely the root of the trouble b/c he often doesn't have a computer that works correctly - therefore, has trouble doing work. yesterday, he is accused of having made rude derogatory comments that made the teacher cry (?!)- overheard by other adults, but no exact statement can be given to me. he says he did not say anything. he says, "even if I did, I wouldn't be stupid enough to say it around her or in her class" vice principal (who I previously loved, but am frustrated with this handling) is involved -- kind of just wants to move him out of the class and get over it. I think it is inappropriate to have 'rude', 'disrespectful' and 'engineering trouble with the project' as the statement. I think we need to know specifics and exacts. I am sure that he has had trouble in the class b/c I can readily admit that his anxiety shut down is maddening. I don't understand why teacher has not addressed it prior to this and think this is inappropriate handling. I have appointment with psych next Tues to discuss. I didn't want 504 for him b/c I wanted him to learn to adjust and learn to ask for the accommodations that he needs. this was going well -- but now I am feeling that they don't really get him and he may need extra help. thoughts? ocdmom, dcmom, llm ?? anyone else appreciated also!!

I'm always hesitant to say things like this, so let's all knock on wood together, please. but, I do in hopes this silly story may give someone a glimmer of hope that there really is light at the end of the tunnel. today, ds has a check in appointment with doc. it has been 4 months. 4 months ago, I was happy that doc kicked him from the 2 month schedule we have had for about 4 years. we had tried it before, but had to come running in before the time was up. today, he's doing fine and it really is just a scheduled follow-up. as I've learned, I go in with my notes organized and ready so I don't forget anything. I wanted to discuss our issue with Vitamin D a few months ago (ds seemed to react with even small doses such as 400iu with pandas-like symptoms but tests low, in the 20s). i actually couldn't remember how i wanted to say what the behavior was. i had to look back in my notes to see what it was. it was 'unreasonable and over reactive upsets'. oh yes, how could i forget?! there was a time when we lived hourly with unreasonable and over reactive upsets and now I'm having to look up what the symptom is. yes, i am very grateful for that and i wish for everyone struggling hourly that your time to have to look up past symptoms is just around the bend!

if you truly have Celiac Disease, as a genetic condition, due to the mutation, gluten destroys the cilia in the gut -- maybe not actually cilia, may be called villi --at any rate, the small protrusions that exist on the gut wall to help it to properly function. over time, small disturbances add up until you have no or very little of these protrusions in the gut that make it work properly. I believe initially, the villi lay down and do not work to filter and then wither and die. and yes, if you have true Celiac Disease, one bite of pasta or one cracker can cause this reaction. the questions come in when you do not have true Celiac, but have a sensitivity to gluten. some say you would not have this same reaction. others say you may, but it is just not a hard, fast, always gonna occur and be extreme situation. one of the leading researchers used to be with Univ of MD - but I see now has interestingly transferred to Mass Gen. http://www.massgeneral.org/children/services/treatmentprograms.aspx?id=1723 -- Alessio Fasano. I found it helpful in the past to understand Celiac was helpful to understand gluten issues. when my son first became ill, we saw a naturopathic doc who did an IGG food sensitivity test. he was off the chart reactive to over 15 foods -- all gluten, dairy, eggs - a few others. we immediately went cold turkey. he ate a GF/DF diet for about 2 years. we then slowly added foods. he now eats a typical 9 year old diet. I have mixed feelings about it -- it is easier, he does not have restrictions when we are at a party or restaurant, school parties are fine -- but, he ate much healthier the other way. unfortunately, since nothing exists in a vacuum, we were desperately seeking solutions so he began this diet around the same time he got on his 2nd abx, Keflex, and had a 100% remission. it was so quick, I knew it was the abx and not the diet. he continued to have exacerbations and better times even while eating the strict diet. I kept him on it because I thought it would be beneficial to lighten his 'toxic' load. this was 5 years ago and even where gluten free has come in that time is amazing. the first month, my kids ate A LOT of rice chex as we were trying to figure it out. once you get into it, it is not that difficult, it's just that it is so different from the way 95% of people eat. everyone told me that it would be amazing how much new and different things my picky eaters would be eating in a few months. that never happened. they still do not eat fruit and veggies and never began -- even after 2 years GF/DF. the idea that they will not starve did not hold true for us. I guess if they were really going to starve, it would - but they would just wait until the next meat or rice/potatoes -- if it was the next meal or the next day. I did not buy a lot of GF products -- mainly because they are expensive and if they couldn't eat a strawberry or a grape, I was not going to buy them a $6 bagel! he did eat more meat than I would have liked -- but he had to eat something! I did have some good baked goods recipes -- we found they are best right hot out of the oven. I even had a chocolate chip cookie recipe that people didn't even know was GF. as I said, as he got healthier, we slowly added things -- like one thing one day. he had no reactions. after a year or so of regulating how much a day, during our move, we threw off the restrictions. I don't believe it made a difference with any symptoms. my final take is that it is highly personalized and I fully believe there are people who see strong reactions - but it may not be the golden ticket for others. I do think GF/DF is a healthier diet for anyone -- seriously, fruit, veggies, meat, rice. I think a lot of the substitutes are problematic because they are highly processed. I think for my ds, his system was in such a state of disarray, it was likely helpful for him to have as little assaults as possible. I think if you are going to do it -- it is easier to go cold turkey and just eliminate it rather than just trying to slowly cut down. I do think there are people who can benefit from a reduction in gluten and others that need to have 100% elimination. I'd say it's best to do 100% and then add a small amount and see what happens. the trouble is, it's not always an immediate reaction you'd see. so, you could have a symptoms some time after that was due to the gluten, but not know to attribute it to that.

we have found short-term relief with motrin also. I do not think ignoring anxiety will be helpful. as troublesome as it is to confront it with therapies and strategies, I think ignoring only makes it worse. some things we have found helpful -- The Explosive Child by Dr. Ross Greene; Social Thinking by Michelle Garcia Winner -- you can google both; and 6 step problem solving. it is interesting that ds often has a different 'goal' than everyone else involved. as in, 1-define the problem; 2 - define the goal; 3- list possible solutions. of course, he has vastly different solutions than anyone else if he has a different goal. if you do not realize this, he appears to be obstinate and completely unreasonable and only gets angrier because no one understands his perspective. when you do understand it, he is only trying to find ways to reach his goal. it's not so much his solutions or stubbornness that needs to be adjusted, but his goal. once we agree on a goal, the rest usually falls into place. this is our situation now, as he is in a healthy state and we have been working on this for a while -- but we did begin some time ago and it still did make things easier. if she is having anxiety about something, her goal may be to avoid it at all costs -- if your goal is to power through -- you're going to have a very difficult time getting anyway. if you can first agree on a goal, it may make things easier.

I have similar thoughts to LLM. may not be your issue at all, but my kids have had trouble with supplements that are supposed to be helpful. ds11 had trouble with a high dose probiotic -- not sure if it was the high dose or the specific strains. he does much better with a lower dose of only a few strains -- can't remember right now, but it is HMF Forte. he has also shown through energetic testing that NAC is not something that would be good for him - have never tried it. may also have trouble with Vitamin D - was showing some troubles that have improved when I stopped it. ds9 has had trouble with vitamin D that I still can't figure out. has had paradoxical reaction to GABA. they have also shown herx-like reaction to treatments. for us, it has been fairly short lived. ds9 had extreme reaction once that included food refusal. other than that, has been ramp up in symptoms. I'd say I am usually willing to think herx for about a week -- maybe 2 -- but no longer. that is just my thoughts of our experience. I've heard improvement with charcoal is a good indicator of herx but have never tried it. good luck!

maybe not here nor there in your decision to give it to your child. . . I seem to remember when it first came out that it was the vacc manufacturer that was the loudest voice lobbying congress to make it a mandatory vacc.

the other day at whole foods, I noticed fresh turmeric. I was wondering if I could do something with it -- like a tonic. I remember long ago having fresh ginger ale on a boat cruise for sea sickness. would it have a high enough concentration to use it like that? is anyone doing anything with fresh turmeric?

joybop - glad to hear NIH was such a success. wow -- great to have those opinions! I can't remember how old your ds is. mine was 2nd grade when we dealt with this -- 2 years ago. and, he was quite healthy. he was trying to get back into school after 1 year of homeschooling. his entire school career had been a mess -- 1 year successful preschool at age 3.5. next year pandas hit -- he maybe went 1/2 of the year; when he was there, it was mostly was troublesome. 3rd year, a lot of up and down with the addition of conflicts with the teacher about work refusal -- in retrospect, mostly surrounding handwriting. like I said, he was mostly healthy but with a strong dose of 'reasonable' school phobia b/c it had been so troublesome. with an added bonus that he is pretty classic twice exceptional (when first tested, about a 40-50 point discrepancy in 2 values - bringing his IQ down to the 1% level). the school did not understand him, thought I was the only one to understand this alien disorder he had and just thought he needed to obey and 'go to class because that's what the grown-ups are telling you to do' when he exhibited anxiety about going to class. we had doctors letters for both pandas and anxiety-nos on file. so - we got him out of there and he was on hometeaching for 7 months. I don't even think it was b/c he couldn't do school -- it was that he couldn't do it there. it was sad b/c he did suffer b/c he was really ready for social exposure but it was better because they just couldn't understand so lack of social exposure was better than negative social exposure. he had a fairly successful baseball season that spring. we were fortunate in that the teacher had a background in special ed and understood how he had 'Asperger-like' issues. she was very nice and helpful for him. academically, I supplemented but I don't think he really learned a full year's worth. the next year, he got a spot at a great charter school I had been interested in for a couple years. they have a fabulous staff who was able to comprehend what I was telling them and did their own testing and observation and were able to get an accurate picture of him. knock on wood -- he has done great for the past 1.5 years. they are proactive and responsive. he has picked up academically without really missing a beat. he does type more than an average 4th grader, but he does not have provisions in his 504 for it. I would absolutely say take the hometeaching and get your ducks in a row about what to do longer-term. it doesn't sound like he is having much success there at all, so are you losing that much? if you want to continue at that school, maybe you can work something out - but it will be less stressful for you and them if you are not doing it while he is actively struggling in the classroom. my ds did have an anxiety issue lately. we had help from a staff member who knew anxiety and was amazing at handling it. handled incorrectly, it could have sent him into a spiral. with this knowledgeable intervention, it was a 5-10 minute blip. I think a staff that 'gets it' and can work with your child can make all the difference. I don't know if it's worth it for you to try to fight to get them to become that. good luck! are you willing to share what NIH gave you as treatment options?

we have had what I consider a great deal of success with an 'ART-like' treatment. we see an integrative MD who treats with homeopathy. he does not do specifically ART, but something similar. we have spent a good deal of money, b/c it is all out of pocket -- but it pales in comparison to what we would have spent for IVIG. my parents are traditional medical, I have always had alternative leanings. so - I was searching for options for ds quite early. now - I feel I have results that back up what makes sense to me. good luck. I personally like to make the distinction between naturopathy and homeopathy. obviously, I believe naturopathy with clean healthy living and options such as supplementation, avoiding allergens, etc can very much aid in healing. we have used homeopathic substances as one would use traditional medicines and this is where I think we have seen out most benefits.

thanks!!!

oh dear forum friends. . . I am trying to get my kids back on track after some hard years and suburbia sucks as a place to do it -- with political BS of sports teams and social groups. I know I am taking this little setback way too hard -- this is actually my older, less affected ds -- who just really can't seem to catch a social break after some lonely years - from his own and from difficulties due to brother. anyone to wallow with me -- or give me some words of wisdom?

are you familiar with the social thinking program by Marcia Garcia Winner? you can google it. she has a great line of reasoning with 'expected' and 'unexpected' manners and behaviors. it's very good and quite easy for kids to grasp. it is less of a 'good/bad' or 'right/wrong' scenario and more of we live with 'expectations' of others. when someone steps over those lines, there are consequences. it may be helpful in getting him to buy into why he should work on the things that llm has outlined. he may be so involved in his own compulsion/obsession that he has trouble seeing why everyone may be so concerned/bothered. along the lines of if you jumped up on the table on day at breakfast and started screaming. that's unexpected. there is actually a lesson where you do something like that. the kids quickly get it because they feel it -- it's odd. that's what everyone else feels when he pokes. so -- just as he would have bizarre feelings towards you -- others have bizarre feelings toward him.

i am back on this vitamin D puzzle -- anyone have any thoughts for me? ds has been doing well. school, attitude, ART testing - good. he has weathered a few colds well this fall. mid November I put him back on vitamin D -- 200 iu. (interesting that I couldn't remember why I took him off, but found it in this post ) he has not been tested in a while, but was still around 20 at last testing and has never had long supplementation. now -- after 5 weeks -- he has some symptoms but does not seem to have any illness symptoms. of course, the last few weeks have been busy, so my recollection isn't so good. first I remember is at Christmas dinner when he screeched that he didn't want an assigned seat. the next few days had a few other incidents of quick overreactions. he is able to recover fine and move on - but the very short fuse is there. he also had issues with going somewhere 'without being told' largely because it is a 'waste of his time'. he has reacted to others 'being mean to him' and 'just wanting him to be unhappy'. he is frustrated with a school project because it is 'just too hard' and a 'waste of time'. these are all key phrases that usually indicate something is up. today was day 3 off the vitamin D and I think I see improvement. he ran out to a store with me, kind of far away, and didn't blink an eye. seemed more flexible than the past week or so. I looked back and seemed to find mention that trouble with vitamin D could indicate high levels of dopamine. should I think about that? is that something that can be tested? thanks for any thoughts.

joybop -- I definitely want to look on the positive side of this and think that the school is trying to help and gather information that will be helpful in supporting your son -- I also know that you are working tirelessly to find answers and solutions for your son -- I do feel that sometimes that can be a dangerous combination -- in that we think we are being helpful and there is so much to explain, discuss, educate about so -- when I read your last post, I am reminded of Beth Maloney's words at the Providence convention about if you find yourself in dealing with a less than supportive hospital or legal situation, and want to have you just keep that in mind when you talk with the school social worker -- it was something like -- 'you need to think of everything you say as how it would also be used against you' not that I think you are in that troublesome situation -- just that it is good advice. the people that we deal with do not live our lives and as good intentioned as they may be -- sometimes it is just impossible to understand a path you have not walked in. so -- I'd say have notes and outlines of what you want to have the social worker know. take time to think before responding. be clear on what they are asking, trying to discover, or suggesting. don't hesitate to say, 'I'm not sure, i'll have to look it up and get back to you' or "I'll have to really give that thought before I can give an accurate answer" good luck!

jph -- I'm not sure what you are asking -- was he untreated for 3 years and has now been treated for 23 days? if that is the case, I would not think I would expect striking results quickly. if you have seen nothing, I do think I would expect something - but maybe minor, especially if he has been sick for at least 3 years. also, there are sometimes results that you don't seem to realize day-to-day, but are apparent only in retrospect. I think healing is a lllloooonnnnggg process. God bless those who see more immediate results. our synopsis. . . we were fortunate in that we got a pretty quick diagnosis -- fairly sudden onset(5 yrs ago, late Oct) and fairly quick diagnosis (Dec) and correct abx in Feb. he saw an quick - about 3 days - 100% remission on that abx. but - it didn't last once off the abx. we then began our long road back. he was 4.5 at onset. I now say he was likely sick from ages 4.5 to about 7. that was WITH a diagnosis and treatment. he just had ups and downs and exacerbations and remissions. I'd say it was about 3 years to stable health - with treatment. then we had a horrible situation at school that I believe caused a stress-induced exacerbation. that lasted about 6 weeks. then a few months later, we had an exacerbation I believe was caused by an allergic skin reaction. that also lasted about 6 weeks. so really, another year in healing - but I believe due to other factors than simply infection like we generally talk about. now, he was quite sick last spring - fever for a few days and lethargic for about a week - only a very slight uptick that one may even just attribute to having been sick in a 'normal' kid. that was a good weathering a sickness after 4 years. previously, he was up and down with slight colds. I'd echo momwithocdson's advice about journaling. when ds relapsed after the first remission, he went back on the same abx - although not initially at the same dose - at the time, I thought it didn't really have an effect. however, later and through notes, I realized that he did see improvement from it - it just wasn't the dramatic 100% improvement that he had seen before and we were likely expecting and hoping for.

is anyone willing to share - here or PM - what was discovered on the SPECT scans? thanks.

you may want to learn about migraine headaches with aura. if you have a neurologist - you can discuss with him/her. a google search will bring you lots of info -- it is very possible to have migraines without the headache, so don't focus on whether or not he has that -- the tingling is part of the aura -- it is a neurological event. may not be -- just a suggestion, to think about. generally, it is considered idiopathic, although there are many theories about triggers. there are people who also believe it is triggered by infection and/or TBI.

how do you feel his state of health is? I may wonder if this is some type of contamination issue. the reason is say this is. . . I have just recently seen an old picture of ds that I love. he is sitting in an outside chair on a beautiful day and he has a smile on his face. when I recently saw this, I noticed his fingers are closed, not clenched, and he seems to be holding what I now would think may be a contamination-safe pose of his hands. his palms are down. this was long before what we know as his only contamination phase issue that was very brief and likely a herx-like reaction induced by an anti-viral. other than that, he did not have contamination issues -- that we knew about.

we have had good success using homeopathy with an integrative MD. this is different from supplements or naturopathic medicine. naturopathic medicine can and often does include homeopathy - but homeopathy is a specific form of medicine that is not supplements nor clean eating and other things that are sometimes confused with using the term 'homeopathy' when really meaning 'naturopathy'. classic homeopathy is using a specific remedy to engage the body to heal itself. we have used a different form in which we have used the remedies as you would other medicines such as abx. we have used sprays or pellets that have been easy to take. sounds a little off, I know. . . but ds is doing well. . .

I'm not sure who exactly is meant by "the county" well -- I guess that is directed at me b/c i'm the one who said it -- it's just what I wrote -- asking for help and direction from the county director of 504 plans and the county director of special ed - b/c the original poster feels at an impasse with her individual school. I have also suggested getting involved with the local SE-CAC - of which, the director of spec ed is usually a part and can give direction or other parents and/or school employees can give direction. i'm not slamming spec ed in general -- except, yes, in our particular case and I usually write 'in our experience' -- which was disastrous -- that they were negligent and could have resulted in harm to many if I hadn't been in the school -- yes -- in the school - often -- at the request of the school admin. I was totally new to public ed and only now realize how ridiculous that was. our school told me the level V school he 'should' be attending -- with no eval, no IEP - their erroneous opinions. this was our experience and I feel I have a right to share it - and yes, it is ripping our personal experience -- which I think deserves it. I am not ripping spec educators in general -- just urging others to be aware and advocate for themselves, and if they are feeling as if they are hitting a brick wall, to seek help elsewhere.

also -- please be aware of exactly what testing the school is planning on doing and by whom. it sounds like you are likely to have the school psych do something and it sounds like he already has preconceived notions that I would be very skeptical about. I think you need to just cut the cord with trying to get what you are looking for from the school. they are showing signs that they just don't get it. i'd suggest not continuing to bang your head against the wall and branch out to where you can get some practical help.

i agree with the posts that you need an advocate. I also think you need to be working at the county level. it sounds to me a perfect time to e-mail back the principal and ask for e-mails and phones for the county director of 504 plans and the county director of special ed. you can word it very pleasantly that you are looking for help. you can find these people on your own and contact them - but if you ask the principal, you are letting her know that you are doing it so it doesn't seem it is behind her back - if you are concerned about that - or just do it on your own. in our experience -- which differs in specifics - but is along the lines of yours - for some bizarre reason, our individual school seems to be hesitant to involve the county people. I think they are afraid it shows badly on them that they can't handle things - there are times that they may need help and for us, they did. the principal did say to me, "to be honest, I've called the county behavioral help" - she said it as a negative, that now we were really in trouble --(I do think this was her thought) -- when my advocate heard the story, she was like, "where the &*&* were they are day 2 when he was physically refusing to go into the building". the county behavioral person is so nice, on the ball, aware of innovative techniques, aware of the realities of children and troublesome issues and aware of good strategies to help kids. the county spec ed help that came to observe my son - way too late - was horrified. she tried to conceal her dismay - but it was apparent. the school thought they knew what was up -- the had erroneous assumptions that ds was just a poorly behaved brat and I was wacked, so why would they think they would spend any resources. the county people are much more aware - in general about special needs and about legal issues. even with that, we did have an outside advocate that really made a difference. I think it would have been much more of a fight without him. so - I think you need to include the person you are thinking of using. and I think the people at the county level need to be involved. and, I think it's better if you contact them, than the school. you're not looking to put the school on the defensive, but they clearly do not have the right perspective on this. good luck.

I would wonder if there are specific obsessions, anxieties, or 'just rightness' that are present with you or in the settings that you are in with your daughter that are not in the other places and situations. I think many times with our kids the real triggers can be so hidden. when my son has been in exacerbation (and seen in an uptick in behaviors due to too much vit D) he has bizarre behavior with his older brother that he needs them to do and have things in exact sameness -- as if they are the same person -- putting their clothes on in exact precision, - exact leg at exact time, getting their dinner plate at the exact same time, finishing eating at the exact moment. it's quite strange and impossible for other people to understand -- even observing it, I think trained psychs wouldn't get it or think this is the trigger -- but I've seen it multiple times. I actually think it is tied to something more devastating to think -- that he thinks he is keeping his brother safe if they are in total alignment. anyway -- I just wonder if you could evaluate the places and activities you are involved with that throw your daughter and see if there could be something to it, that there are other triggers in where you are, what you are doing or how you are doing something. good luck!!