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Everything posted by smartyjones

  1. have to say, I'd second SSS and say I saw a tick. we recently had an anxiety issue with ds10 at school. that weekend, ds12 woke up Saturday with a sore throat. our peds office had no more available appts so I took him to Righttime clinic. I was explaining to doc - who I thought seemed okay, or at least just let off an air of confidence (or arrogance) - that we need to be very careful with strep b/c I have a younger son with an autoimmune issue. he stated, 'younger ds has rheumatic fever?'. I say no -- PANDAS. he looks quizzical and I start just a quick explanation -- you'd think I'd know by now! - as I am spelling out the acronym, he interrupts with, "oh - that has nothing to do with strep." just as I finish, "associated with strep". after he swabbed him, he must have looked on the internet b/c he had a very different attitude when he came back in. note to self -- I will now just state that ds has rheumatic fever. I know I am talking about siblings and you are talking about the same child -- but I would say there was some sort of tick involvement.
  2. ds last exacerbation (KNOCK ON WOOD - I am always nervous to say that) was 2 years ago and I believe due to an allergic reaction to sunscreen. I have known he has had sensitivities to sunscreen -- this one did not have the major ingredient that is troublesome in it and I thought was okay. he used it one day - the next day he had some redness on his arms and face. he'd been in the sun all day and I stupidly thought I just hadn't been vigilant enough with it. so - I put it on him for day 2. that night, he had more redness and slight bumpiness. *#$% - I realized it was the sunscreen itself that was causing the trouble! this tipped off an exacerbation. luckily - it was fairly mild. (or perhaps, I have just forgotten.) it lasted about 6 weeks. I think it was engagement of the immune system in an allergic reaction that got it rolling. did he use any sunscreen products that could have caused an allergic reaction? I can't really remember - I think I thought about Benadryl but don't remember using it. has he had experience with Benadryl? perhaps something to try -- ??? good luck.
  3. after a hellacious 2 weeks -- ds9 has been in a good state of remission for 2 years, had a great year at school last year, had a really good fall, started falling apart this Feb when 2E issues were not being addressed - very up and down few months - finally began getting straightened out 3 weeks ago ; fell further last week with a misunderstood severe fight or flight reaction to a sensory overload in a classroom -- further exacerbated this week when school tried to force him back into class (and this is a school and staff that I love) this week, integrative MD says believes rocky mountain spotted fever may be an issue, wonderful psych has gotten school to see this through a different lens. now they get it that he fell off the radar because he was doing so well. yesterday and today were okay at school. yesterday at home, I felt ds had fallen off a cliff when unable to do focus - on homework and more. he's okay today - I think he's in some form of PTSD. he seems good this afternoon. had a marghertia at a favorite restaurant tonight then stopped at grocery store for quick run-in - getting orange and lime juice for margheritas at home. with my 12 year old - he and I bought decadent brownies, then saw ben and jerry's on sale and got that. ( I know the whole diet issues - don't be worried - I got it handled) good thing dh was driving! please -- send good vibes for a good weekend and end of school for him!
  4. how much vit D is your son on and how did you arrive at it? my ds also has a very sensitive system. vit D has always been a problem for him that I have not been able to figure out yet -- he is currently not on any.he does not have tics, but the vit D causes a ramp up in behaviors. I just got a new vitD with K by thorne that I am hoping to start in the summer. could it be related to that?
  5. we are about 5.5 years from when I ever first heard the word "PANDAS". we were fairly lucky - it was about a month or so after my son's bizarre behaviors started. likely sometime - 6-12 months, like you beerae22 - after that a friend posted on facebook (not related to me, just in general) Life isn’t about waiting for the storm to pass… It’s about learning to dance in the rain. - Anonymous, more recently attributed to Vivian Greene I remember crying and crying and crying and thinking - I don't WANT to learn to dance, I just want it to STOP f-in' raining. and after some time of wallowing in that, a voice spoke in my head that said, "too bad, honey, it's raining and it's raining hard - so you better learn to dance or you're just going to be wet." Marianne Williamson once said when she gives advice, sometimes people say to her, "well, that's easy for you to say - you are not in this." and she says, "yes, it is - that's why I'm saying it" I want to say some things in that manner. I don't want to sound harsh - I know how you are feeling, because I've felt it -- I just don't feel it anymore. I'm on the other side and I know you will get there too. you just need to keep going in where you are now -- don't stop now - you'll be stuck where you are. yes, beerae, I know you want your life back and do not want where you are now. unfortunately, that is not where you are . so - yes, you are supposed to be grateful that she is in school and that she has friends -- NOT because she may not have that next year, but because those are wonderful things to be grateful about. it's funny how relative things are -- I recently did some work at my kids school with a very sweet 3rd grade boy who has behavioral issues, tricholomania, tics - and that's what I know in a few hours. and all I thought was - I hope his parents know how disregulated his immune system is and are working on healing it. I left that day feeling grateful that although it's been h**l and I NEVER would have chosen it, I know how troubled my son's entire system was, I know how we got him back on track and I have plans in place to keep him healthy and what to do when/if he slips. I know what he needs and how to work with him and it was NOT the level V school incompetent school officials tried to tell me it was 2 years ago. how many kids there also should not be there but no body knows it? you may find it helpful to use the Buddhist practice of seeing what there is to be grateful about what you are loathing at this minute. the times I have been able to do that - it's been bizarre -- it's like it just crumbles away -- maybe not the problem but the helplessness and despair. and no, you are not foolish - she will get better -- it just likely will not be on your time schedule. good luck
  6. hmm - do you have a homeopath that you are working with? we work with an integrative MD. I would think you may be doing a little shooting yourself in the foot if you are doing both. it could be possible that you are engaging a herx-like reaction from the homeopathy and the enhansa that the abx is keeping that in check. idk - just a thought. maybe you then should bite the bullet and get off the abx - ?? idk. perhaps wait until summer when you don't have to deal with school -- ?? yes -- I'm with you -- we first did the abx b/c he was so sick. even though he saw great results initially - so I knew abx were effective, I wasn't jazzed about having him on them longterm. when the second time didn't see the great results (although we did see some results) I knew we had to find something else. each time, he was only on for 6 weeks. the trouble weaning I'm speaking about is from the remedy - which was a bacterial formula -- like a strep nosode. what is your ds's constitutional?
  7. cara -- I know that I found and so have some others (momwithocdson) that it took quite a long time to get our kids off abx - actually for us it was a homeopathic remedy that we used as one would use abx. we tried multiple times over quite some time to wean him off that remedy and were unsuccessful. after maybe the 3rd or so time, our doc just said, we'll just leave him on for a while -- perhaps another 6 months. then we tried and didn't see symptoms come back. so - yes, I can see that you are discouraged and it is good to be searching for other options, but don't be too discouraged. it may just not be the right time NOW to get off the abx- but you will get there!! oh wait -- do I see correctly that he has been on abx since Nov -- so you're talking 6-7 months? I know you may feel anxious to get him off that but I don't actually think that's an extensive time. my ds was on 6 weeks of Keflex - 100% remission. then after 6 weeks, symptoms returned. he did another 6 weeks Keflex but not to same great results. we then went searching for other answers. about a year later, we found our current doc and got on the remedy we used. he was likely on that for a year or so before we started to see success in weaning him off. granted, it's a homeopathic remedy, so things are different - but I do know at that time, there were also many people seeing that kind of result in trying to wean off abx. good luck!
  8. hi LLM. what do you mean when you say your DD didn't have pans symptoms from virals but lysine 'brought her back within weeks'? ds12 is being treated for EBV with a homeopathic but he can't seem to fully kick it. he has a slight hum tic that I think is due to that. that really seems to be the only symptom we see. I'm thinking of adding lysine. how much did you give your DD and for how long? thanks!
  9. hi Ashley. please don't be offended by anything I say -- it's all just my opinion, so take it FWIW. I think 6 weeks is a short time to be GF/DF. you can search back through old posts of mine to find out story. when ds was first diagnosed with pandas, we also saw a naturopath who ran blood panels. he came out with off the chart igg to over 15 foods -- all dairy and glutens. we took him off all cold turkey. he also went on Keflex at this time. in about 3 days on Keflex, he had 100% remission. I credit abx, not diet. however, I kept him on a strict GF/DF for definitely 1 year, perhaps 2. he was about 5 yrs old at the time. yes, the social times were the toughest -- bringing something for him to eat while everyone had pizza at a party; he'd have a chocolate bar while everyone had cake. as his health improved - like I said, probably after 2 yrs - we began adding one thing a day. first, it was likely one thing, then wait 3 days -- very gradual. I actually never believed the diet was the major issue -- during the time of the strict diet, he had both bad exacerbations and complete remissions. we saw no changes when adding foods. when we took off all restrictions, he seemed to have trouble regulating eating -- he'd eat a whole meal and then say he was still hungry. he gained a lot of weight in a short time -- 10 lbs in a month or something - ? he now eats like an average 10 year old. he never ate fruits and veggies. I actually think for any person, a GF/DF diet is the healthiest -- not processed, but rice, meat, veggies and fruit. as I said, I didn't keep him on that diet b/c I thought it was specifically something to pinpoint changes -- it was more that I thought his whole system was in such a state of disarray that any little bit would be helpful -- just that much less to challenge him. good luck.
  10. I have an appointment with our regular pediatrician next week and I plan on trying to talk to him about P.A.N.D.A.S., hopefully he has some knowledge most people do agree that you will need a 'PANDAS doc' to deal with these issues. the average ped is just not experienced to be able to handle the level of care that is needed. I do agree with this - although we personally do not see a "PANDAS doc" and have gone a different path than most - we see an integrative doc who treats with homeopathy. I am sure to have our plans B and C in mind in case we are in need of them. I do very much like our ped. he is helpful but I am aware of his expertise and limitations. I have had discussions with him on his willingness to consult with and/or take directions from the PANDAS doc that we would see if we needed. if we did need to do this, it could certainly present many complications - but it is also helpful to know your peds attitude about even the possibility. just a thought of something you may want to think about in your discussion with your ped.
  11. I did see Dr. Aguilar in Providence and will also consult my notes - but I was curious to get opinions here. I do believe that one of my son's last 2 exacerbations (knock on wood - grateful! 2.5 years ago) I believe was brought on by intense stress surrounding extremely difficult situation at school. he is again experiencing trouble at school - not as difficult as before - and I do not believe due to pandas - more so due to unmet 2E needs - so does anyone have thoughts on stress inducing exacerbation?
  12. i have not used this with my kids - used on myself. a friend of mine has worked in nutritional supplements for years and for a couple of companies and she recommended it. it come in capsules but perhaps you could open and empty into juice. digestmore by renewlife. we see an integrative MD who used homeopathy. a year or so ago, we were all struck with a virus. my digestion never seemed to be right after that sickness - perhaps 4-6 months. this doc suggested digestive enzymes but not a specific brand. my friend suggested this and it was helpful.
  13. I get quite confused with the glutamate/glutamine discussions. I think momwithocdson has a good handle on the distinctions. I only know from personal experience -- I myself love GABA. but not too much -- I take source naturals 125 mg. no more than 2. I have also taken natural factors pharma - that's more expensive. I seemed to be irritable on solgar 500mg. I don't take it daily -- generally before things like - speaking to ds's teachers, public speaking, if feeling crabby, etc. ds9 had a paradoxical reaction to gaba. pharma seemed to have no reaction -- solgar was terrible -- hyper, irritable and obnoxious. we tried it 2 times. the first, I thought it could be a reaction. the second, in about 1/2 hour, dh was saying, "WHAT did you give him?!" our doc said, yep, it's not so common but some people do have a negative reaction, but that's enough for me -- don't try it again.
  14. in the beginning of the month, doc thought EBV was back to bother ds. he is now on a homeopathic treatment for it - also just began another one for another virus. this doc has not led us astray before - so I'm stickin' with him. homeopathics can sometimes cause herx-like reactions. since nothing exists in a vacuum to make things easy for me to know what is what -- ds has also been having many complaints this semester about school being boring and not challenging. he does have 2E issues so this is valid concern, not just normal 9 yo boy. last week, he ripped up easy math work. also, got in trouble with sub for fidgeting -- 2 other teachers said was unfair for him, they know him and said was sub's fault. he worked through frustration with that well. today, he was engrossed in his own book and wouldn't do work, resulted in him throwing a chair - have not seen that in a long time. I think it's likely he was so engrossed in book(lord of the rings -- I think his brain was off with the hobbits) that he missed the first couple of redirects and probably 'came to' when she was already frustrated and speaking sharply. symptoms for him can be over-involvement in books and quick reaction to panic/violence. I am not really seeing troublesome symptoms at home. I want to give him a dose of motrin in am for school- just as a cover if it is that a bit in a herx and showing up as having trouble dealing in a stressful environment. if that is the only dose, how long do you think I can give it? how about 2/day? thanks!
  15. may be too late now but maybe next time -- if you don't already, you may want to try cold wash cloths at the back base of the neck. I find more relief from that -- I think it is something about affecting the blood flow in and out of the head. hope she is better.
  16. cara -- not sure what you mean by 'marked difference' in tics with upping of probiotic -- do you mean improvement or worsening? my ds12, mild pandas, had severe trouble with a certain probiotic --that was high in billions and had many strains. I can't remember now b/c I think it was 3 years ago, but he had symptoms that are usually only seen in those with short-bowel restruction surgeries. you can google that or try to find old posts of mine discussing it. if you are seeing trouble when you upped probiotic - it could be that that particular probiotic is making things worse. may not be your situation but just thought I'd mention it.
  17. riffleshell -- it seems like your positive reaction to vayarin was pretty immediate, is that correct? I had not heard of that before -- am thinking of trying phosphatidylserine supplement. but of course, I posted about it and then heard of PC -- yikes -- so many directions to go! I am mainly looking to it for fidgety issues. ktdommer -- how do you measure floating vit D? we have had terrible time trying to get vitamin D right. ds has not been tested in about a year - he was somewhere around 20 when he was. the first time he was tested, was summer -- he had been outside all spring and summer for good amounts of time. when he was younger, i was vigilant about sunscreen -- but had really backed off -- he had spent much time without it. I found a 200iu that I was trying and going up slowly but even recently that proved troublesome. one of our docs said he didn't think ds should have over 400iu. our other doc does a type of ART and said that particular supplement was troublesome for him. he suggested trying another supplement. this one didn't really have any other ingredients --I don't know -- perhaps vit D from fish is bad for ds -- ??? most of the supps are not that low in iu. I don't know what to do about it. like you mention, our ds is doing pretty well -- so I am concerned but not willing to power through when I am not sure there will be a breakthrough. I wonder if ds has a vtaq genetic issue (?) but we haven't done 23 and me. I think there is some issue with vit D and serotonin/dopamine that causes the troublesome issues with supplementation. but that still leaves us with subpar levels. not sure what to do!!
  18. I thought I posted this already - ?? perhaps I am in need of some omega 3s! please share your thoughts/experiences with omega 3s. we used to have it in our regime, but dropped it when we added other things. I don't really remember thinking I saw differences either way. but I am now thinking of trying it again. I have been interested in omegabrite, but it is expensive. I need liquid for one ds, the other can do pills. we used to use natural factor - EPA1500; DHA 750 in 1 tsp. today I gave them 1/2 tsp - but am wondering if that is a hefty dose -- EPA 750, DHA 375?? maybe we did 1/4 tsp before. I don't know. omega brite recommends 1/4 tsp with EPA 475 and DHA 112. has anyone experienced negative reactions? ds9 is so darn sensitive to many things. also, there was a recent post about vayarin. does anyone have experience with phosphatidylserine? LLM -- is that something you give/have given? basically, ds9 is doing well, but I am always vigilant. he remains quite 'fidgety'. he has a wiggle seat at school and is generally okay. but, he did get in trouble with a substitute yesterday. 2 teachers who know him well got involved and fixed it. the good news is that he was not too upset and was able to advocate for himself with the teachers he knows well. thanks!
  19. i'll save you the details of why I am asking -- this is not an issue we have dealt with personally -- from those here who have, is trichotillomania something best managed with reminders and prompts to not do it? if you saw a kid with it and other issues, such as sensory needs, high activity, ADHD, itchy skin and scalp, and high intelligence, what would you think? thanks.
  20. 3 boys -- my older ds, who had much more minor presentation -- would likely have flown under the radar if we didn't know what we did due to younger ds -- had excess sweating and excess ear wax. he is negative on lyme tests, although we only did quest. we see an integrative MD who believes him to have had lyme, babesia and erlichia. the sweating was not random, it was due to physical exertion, but was excessive. it has now resolved, and he sweats what I would consider normally. the ear wax had also resolved, although recently, I did notice it again. we just recently went to doc, who believes ds is having trouble with a few viruses.' he had a soft humming tic that seemed to take a long time to resolve. I believe a lot of our troubles has been due to viruses. I believe a couple of years ago at a conference in TX (I did not attend personally, but remember hearing) I thought viruses were discussed as being a major contributor. we treat with homeopathy -- I am not so sure what it done in the traditional med world for viruses. I think llm has had good success with lysine. I don't know -- you mention coxsackie -- perhaps that is still troublesome or there is some other virus that is bothering him -- ??
  21. we have had many days off due to weather, so there is a lag in this issue - but they have hardly been going to school. Lord, give me strength!! ds said he wanted to stay in this troublesome class. dh and I really wanted him to switch b/c there was so much trouble. AP offered it up quickly and we jumped at it - said we would defer to AP's thoughts of best way to handle. when AP asked ds, he said he wanted to stay; AP said I think your parents really want you to switch. ds agreed to switch. ds is not so happy with his new class b/c he is coming into a class that has been going on for a semester (of course, common issue for social anxiety). teacher of new class is someone ds is very comfortable with. all in all -- I think it was the right decision, seems all adults feel this way. but - falls on 12 year old kid with not the best social skills who is the one living it and was kind of forced into it -- so I feel bad about that. seems there was no sort of debrief with ds about it all at school. I kind of did that with him but he may still have lingering issues that teachers are frustrated with him. one of his biggest issues anyway is that he doesn't want to disappoint teachers or have a teacher speak sternly to him. we met with psych last week. he thinks trouble with requesting 504 is that ds has good grades -- his lowest score on recent report card is 95. he thinks school could be reluctant to do b/c hard to justify impact on education and they may fear would be hard to stand up to an audit. he suggested some other type of plan that would have some sort of proactive intervention strategy. basically, I want something proactive that would help things not to become such a blown up issue that could have been handled better. it seems to me, teacher interpreted ds's troublesome behavior as being difficult rather than looking deeper. all she would have had to do was mention to homeroom teacher that ds was becoming a problem, we have spoken with him about these issues. I think ds needs some plan because the problem is that ds appears happy, fine, well adjusted, gets good grades, has friends; and for the most part, he is -- until there is a problem. so, if he acts troublesome, it appears just poor behavior. if treated as such, it has the potential to blow up into a big problem. last week, according to ds, he was arguing with a group over how to do a group project in language arts class (it was not the project he wanted to do) and reading a book in math class (the concepts were hard to understand and book was much more interesting). I think it would be ridiculous to wait for next report card to show decline to do anything! I fear he is sinking fast. ( granted, I may be panicking -- but I want to grab him before he spirals). I don't think he is getting into exacerbation -- I think this is all social skills related. I am planning to give letter requesting 504 eval or some sort of proactive intervention plan. please -- what are your experiences with high performing kids and 504? thanks!
  22. I see you are in UK, so things are different than from me in the US. also, a difference for your story and ours is we did not have issues from birth but had an onset of PANDAS. I am not sure what you are looking for -- labeling for what purposes?-- I'm sorry to say, I know how frustrating and exhausting it all is, but I don't think you are going to get relief from a 'label' that will help your child in all situations. from my experience, labeling may be different for different purposes. from your story, I would think the other things you mention, could all be due to the root cause of PANS. so, it would seem PANS may be appropriate for medical treatment purposes. why is it that you think PANS 'as an added extra'? admittedly, I don't know that much about dyspraxia as a stand-alone diagnosis, but I would think, if you have some issue of PANS, all those symptoms, could be related to the root cause of the PANS. however, we also experienced a bad situation at school where they thought PANDAS was some outer space diagnosis that only I understood. after a disastrous situation, I learned it was more helpful for school situations to speak in terms of anxiety and 'Asperger-like behaviors' - those are things they have dealt with, they understand and they can work with and provide strategies and coping for what is happening in the current moment. so - we have found it most helpful to have a medical diagnosis of PANDAS and that helps guide our medical treatment. we also have a diagnosis of anxiety-NOS which helps guide psych treatment. we have diagnosis letters of both for school and an 504 that lists both. the accommodations in the 504 are pretty much all anxiety and sensory based.
  23. I'm not so sure what you are asking dut. just wanted to mention that my ds had eye pain with onset. he was 4.5 at the time, but I remember him sitting in his car seat, holding his hand over his eye and yelling about how his eye hurt. then it would seem to go away quickly. he also had one night he awoke with intense ear pain in the middle of the night; when he woke up for the morning, he was fine. the doc did not see ear infection. this was with onset of symptomatic behaviors in late Oct. early Dec, he had ASO of 898; early Feb he had a CT that showed all 6 sinus cavities infected. dizziness can certainly be related to ear issues -- but maybe sinuses too. have you checked her sinuses?
  24. as we consider 504 for ds12,it would likely qualify under "ED" because although I do believe him to have pandas/pans, he is rather mild. with onset 3 years ago, we already saw integrative doc for ds9, so went directly to him for ds12. this doc is not so jazzed to write official letter but more likely to write supplemental letter of support when there is another doc doing diagnosis on more traditional terms (this is fine with me, I'm not interested in trying to change this). he did have elevated titers with onset, but there isn't so much documentation about it, b/c we went directly to integrative. so - I don't easily have medical letter stating pandas/pans pediatrician has written in his school form, 'social anxiety disorder', 2 years ago psych will write letter of either social anxiety disorder or anxiety disorder - nos the problems that are occurring are actually social anxiety issues - he may have exhibited anyway not due to pandas/pans pandas symptoms if exacerbation are mild - he would likely have flown under the radar if we didn't know about ds9 (of course, they could have gotten worse if not treated, but it was) I feel if he does have exacerbation, we can treat it quickly; if not, we could regroup then. I don't want this now for possible problems that may not happen I don't really want this for specific accommodations but more for if there is a problem, there is backup that things are not always as they seem on the surface I don't imagine I would ever have allowed ED for ds9 as primary qualifier. I easily have medical docs letters, his symptoms are much more severe and were more related to pandas. with disastrous situation with ds9 at other school, they tried to change his OHI 504 to ED IEP to railroad him into a level V school he never should be at, so I am leery of ED and what it could mean/where it could go. please share thoughts and advice. thanks!
  25. thanks pow pow. I will watch that --- shoot not today -- GOT to get off this internet!! I am interested to learn more b/c although ds is doing well -- although Saving Sammy was informative and helpful for us, I saw more of him in Brain on Fire than a lot of other pandas stories. -- even though she was a 20-something woman and he was a 4 year old boy -- although he never had seizures.
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