smartyjones
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Posts posted by smartyjones
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lfran -- that's what I first thought but how do you have an accurate study with two groups of 40 and one of 24, when you are comparing the groups? and why later does it refer to 12 pandas subjects?
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reminds me of a LLMD I heard speak a number of years ago. . . "I keep hearing from all these patients that their traditional doctors keep telling them, 'it's not Lyme, it's not Lyme'. Okay, fine. Something is significantly affecting these patients health, so if you think it's not Lyme, then find out what it is and TREAT IT."
Dr. Singer -- something is significantly affecting these children's health!!!!
- MomWithOCDSon and philamom
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what?! granted, I am no scientist and I don't know how to read research, but how is n=44, n= 40 and n=24 showing no difference? what exactly does the n mean? and how is 12 subjects an accurate study pool?
it's all fun and games to refute Singer's nonsense, but it is truly frightening to realize the strong reach of the long arm of JHMU!
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your ART doc isn't finding anything that seems problematic?!
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dut -- interesting!
calling MOMwithOCDson. calling MOMwithOCDson. she seems to know a lot about melatonin, right?
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a couple other thoughts --
- younger ds is sensitive to vitamin D, although tests low in it -- still trying to figure it out -- if he has too much, above 600 iu, he falls back into old behaviors -- a weird competition, needing to be just like older brother; and very focused on individual acts -- such as reading or a craft -- I mean very focused
- older ds has a sensitivity to probiotics -- either high level or the specific type -- some type of d-lactate scenario -- extremely hard time cooperating or focusing to accomplish tasks, and quite introverted
I am completely sure these supplements caused difficult behaviors in my kids -- not sure why. and for the D, what to do about it but the behaviors resolved when we stopped/reduced the supplement. younger ds also has a paradoxical reaction to GABA, which is quite unusual.
not sure what any of that means for you, just sharing our experience.
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joybop -- i'm sorry i'm not that familiar with your ds's story -- how old is he? he had sudden onset about a year ago? what area are you in?
some thoughts I have
- Im just scratching my head because it seems like so many of these kids function so well in school in between flares and my kiddo seems to get worse and worse. I don't know that I think this is true, especially when getting a kid stabilized. my ds had sudden onset at age 4.5; 5 years ago. I believe he was sick -- brain under attack -- until about age 7. so - yes, he had flares and better times, but I don't think he was in a state of remission until 3 years!! so, he had various levels of functioning but I would not describe it as "so well". it sounds to me that you are very much still trying to get your ds stabilized - yes? I would not expect him to be functioning well if you don't think he is stabilized.
- do you have outside help from an advocate or from a psych or educational provider?
- my advice for your meeting Wednesday is to go in prepared with everything in writing that you need to request an IEP eval, but use the time to listen to what the teacher has to say about her and others perspectives on what is going on in the classroom. I would say to not really talk so much about what you see and think. this will give you much more power to know what you need to do.
- when you request an IEP referral, state you are requesting information in the form of a actual report on his progress -- the actual skills he is displaying or not displaying-- you want numbers and percentages -- you need to know information like, " student is able to independently put his name on paper and date on top of each assignment 3 out of 5 times. he requires 1 prompt on 2 out of 5 trials. he waits to be called on 2 out of 5 trials. he requires 3 prompts 4 out of 5 trials to independently turn in his homework." you want information that can be marked on a tally sheet -- you want it all specifically spelled out -- what is the visual or verbal cue that is given; these are the differences btwn IEP and 504 -- 504 allows for leniency in handing in homework; IEP states an objective toward learning to hand in homework. a 504 is about ensuring equal access to services -- a ramp allows a person in a wheelchair to get into the building; an IEP is about remediating skills -- services to help a person learn to better use his legs -- you need to speak in their terms if you think your son needs help learning skills
- take his report card and past homework and think about what you find troubling -- turn that into statements that you need information about his progress to justify why you are requesting an IEP referral -- have all this is writing to turn in -- don't talk about it, use that time to ask the teacher to discuss his progress as she sees it
- do you know how your school uses functional behavioral assessments? it may be that they could be resistant to an IEP because they do not think it is a learning issue that needs to have objectives. in that case, it may be helpful to have similar specific data about his behavior. depending on your team, they may get hung up here in semantics. i'd say try to understand how your team sees this. if this is what you need, you again need specific measurable data about his progress in his behavior in the classroom. try not to get hung up on the use of the word behavior as negative -- use it to your advantage as behavior that is serving a function for him and needs help to best function in the classroom.
- do you have a diagnosis letter? it doesn't need to say much -- ours just say the conditions and a couple other lines i'll pm you.
good luck!!
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sorry - I don't have much time right now.
It takes 12 or more reminders just to get him to take his materials out of his back pack
I don't believe it should not take 12 or more reminders to get anyone to do anything -- i'd see those as clues that your son needs help to function in that environment.
which, actually, may or may not be done with a 504. one of the first thing I would recommend is seeing if you can get a good understanding of if the teacher, school personnel are on the same page with you that these are issues that indicate your son's health decline, or if they are thinking these are issues of his choosing to behave like this. depending on your relationship with the school, I would think that would be your first step in determining evaluations of how your child is actually doing.
psycho-motor agitation and inability to focus.
these are issues that need strategies in particular environments -- specifically classrooms. do you currently have accommodations in place working with these?
a 504 will provide accommodations - which depending on the circumstances, can lead to remediation - but does not actually provide for remediation itself. an IEP works with helping learn skills that are lacking.
good luck.
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MMC -- that's bizarre! we were riding on the same wavelength at the same moment!
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couldn't write just for the one hour and then the ability came back?
has she ever had any issue with migraine headaches? it is actually a neurological issue -- doesn't always need a headache. you can google migraine with aura and hemiplegic migraine. my integrative doc believes many migraines are caused by infectious issues in the brain.
hemiplegic migraine is a subset of migraines with aura and are quite rare, but people have gone to ER with hemiplegic migraine and been treated for stroke.
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we did have trouble with insurance paying for MTHFR. I would recommend you fully understand your insurance policies before having the test. ours was doctor ordered -- still refused. through labcorp or quest, the test is $400 something w/o insurance negotiated rate. you can get it for much cheaper over labs through the internet.
I am still fighting with insurance. just be sure you fully understand policies when making your decisions.
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I would encourage you to read the pinned notices at the top of this forum on how OCD presents in children. my son had 'sudden onset' - although now I know there were other subtle symptoms before - at age 4.5. it was mainly wild, wacky obnoxious behaviors and school phobia and refusal. we saw a behavioral therapist who met with him a couple of times. at first, she thought he was presenting Asperger like behavior - and then he would do something to negate that thought. on visit 3, I was discussing some obnoxious things he'd done. I don't think i'll ever forget her words - "what you are describing sounds like OCD to me. . . but he's awfully young". I remember thinking, that doesn't seem like any OCD that I've ever heard of.
we had titers drawn -- ASO was 898; he had a positive strep culture although no typical signs of strep and once he got on the correct abx for him, he had 100% remission. (although he backslide when off it)
I also claimed I saw rapid eye blinking only one time for about 2 minutes.
as I've learned more about OCD, I see how much of his behaviors are likely OCD. mainly in the 'just right' sense that if something is not just right in his mind, it is troublesome. this could be for your son, that his friends were doing something 'wrong' or out of what his mind would accept and that is why he yelled.
also, there are things that he would do that could be considered tics -- but only to a very trained eye -- likely a pandas doc.
so -- to me, what you describe very much sounds like pandas that we have experienced.
my son is quite healthy today. we see an integrative MD and most of his journey has been with homeopathic medicine. still -- one of my biggest regrets is that initially, we didn't have him on abx long enough. after a horrible 5 day course of azith -- he had 100% remission with 30 days Keflex and then went off and backslide. he went back on, but not to the full dose and did not see the same results. it was good in that it sent us looking for other infections that he did have. but - knowing what I know now - I would have kept him on that initial Keflex much longer to have time to learn more and to develop plans A, B and C.
good luck.
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we have treated differently with an integrative MD and homeopathy, but we have had 2 herx-like situations. one quite severe involving contamination eating issues -- very scary. it lasted about 7-10 days at the most severe and then gradually got better. the other, about the same 7-10 days with obnoxious, antagonistic behaviors. this not so bad, but annoying. when I discussed with doc, at first he thought I was talking about general behaviors ds had. I corrected with saying 'I believe the new meds are driving this behavior'. he said 'good'. I agree it is from a medical standpoint, however, he is not living with the kid each day.
I do not understand specific abx, cyst busting, combos, so take my opinion for what it's worth -- I cannot imagine living with these behaviors for more than 7-10 days. yes, forging through and getting it over with is great in theory -- reality is that you are people with emotions and life to live. you must consider your mental status and fatigues as well as the medical.
I did attend the TACA meeting in philly last year. dr O discussed using charcoal for herx reactions. can you ask your doc about that?
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are you in public school? does your child have a 504 or IEP?
I would suggest you contact your county. you need help from the spec ed and behavioral specialists who know what they are doing. you can very nicely tell the school that you are doing this, so it is not a situation that you went over their heads without their knowledge. or you can first ask who in at the county level would be able to help. with that, you give them the option to reach out first.
our personal experience was that things spiraled out of control INCREDIBLY quickly b/c the school personnel didn't know what they were doing -- just lack of experience and knowledge and reverting back to what they know and think rather than listening to understand what I was telling them. what I fault them for was not being able to realize they were out of their league. the county personnel were on the ball and informed and jumped up to the plate to research for a crash course in pandas. the school, for some still inexplicable reason, was reluctant to call in help from the county.
I would suggest you not try to get into an educating them situation but rather talk in terms they understand like - 'Asperger-like' behaviors; intermittent extreme anxiety. I think they do better when they feel they are in familiar territory rather than thinking pandas is some outer space new diagnosis that only the mother can understand.
a friend of mine just dealt with a similar situation, no pandas diagnosis - child with an IEP that was struggling in school, just spiraling down. she reached out to the county who have the experience, knowledge and wherewithal to find solutions.
this could backfire in that then you have called in the 'big guns' but my experience is that the big guns are really interested in finding solutions b/c they have a better understanding of lawsuits, etc and are just much more on the ball.
good luck.
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hi said that the brain damage is allreday to big to be fixed;it's permanent, and that there is nothing else to help..
please, if you are not familiar with it, look up the concept of the neuroplasticity of the brain. I do believe it is the overriding theory of the function of the brain, in today's world.
and I think there is only more to come in the future -- NIH is likely getting ready to spend lots of $$ on the BRAIN initiative (hopefully) and I think they will only find more to support this concept.
there are a couple of good books not related to pandas, but about the brain -- one is the Evolve Your Brain, that discusses this. The other is a little different, called My Stroke of Insight -- a neurologist who had a stroke and although she did have some permanent changes to her brain, how she embraced them and found them very valuable even though different from her previous functioning.
furthermore, I believe there is simply not enough research, studies following cases, etc done on pandas to make such a statement.
our personal story -- ds was diagnosed early but persisted with with symptoms after initial 100% remission on abx. I say he was sick from ages 4.5 to about 7 or 7.5. so, fairly 'early' treatment but still a number of years that his brain was under attack. he is very healthy now without ivig, pex nor long term abx. we have treated with an integrative MD using homeopathic remedies.
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i'm sorry -- I don't really know the answer you are seeking concerning ping-ponging back and forth between the two.
I did just want to say, in relation to the confirmed strep in the 2 yo. I believe my pandas child, now 9, onset at age 4.5, never really kicked a confirmed strep infection he had at age 2 that he had the usual 10 day course for. he has shown allergic rash to penicillin, so he was on something else. at that time, we never thought to throat swab him after treatment. he had -pandas onset in full force, 2.5 years later and very high titers. I do believe he had strep festering that entire 2.5 years.
i'd advise discussing with your ped, a protocol for follow up to confirm the strep has been fully treated.
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lfran -- there was quite a bit of discussion here about a year ago -- maybe back to last summer - 2012. did you do a search?
I don't have much time now -- and don't have labs in front of me. we repeated labs in a short period of time - ~4-6 weeks - one from quest, one from labcorp. ds's numbers were almost identical -- but the labs had very different ranges for 'normal'. we were working with a doc who had his own ranges, so it was okay for us, but I found that very curious b/c many docs use the lab ranges.
who are you working with that is investigating this?
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for those interested in naturopathic medicine. . . this past week was naturopathic health week according to a Senate Resolution
http://aanp.membershipsoftware.org/files/Naturopathic%20Medicine%20Week%20-%20S_%20Res_%20221(2).pdf
a Resolution doesn't really do anything but proclaim that this is something people are interested in and the Senate is aware that it is of interest/concern to citizens -- but it is a showing that the naturopathic movement is growing.
there is some good language in the resolution about chronic conditions/cost etc
it is a positive step in movement towards insurance coverage for alternative methods -- still a long way off, but a step nonetheless.
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pow pow -- do you have thoughts on when you say ALL on boys vs girls? do you know if a person is in a healthy state that they will show antibodies -- like the author of Brain on Fire -- would she show antibodies if tested now?
if you feel comfortable sharing -- does your daughter have the cyst issue? if you don't, that's fine -- not trying to be invasive, just curious in the discussion.
thanks.
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for anyone looking for info, this is from the national center for learning disabilities.
I think one of the biggest thing to realize is they are governed under different laws
504 is under the Americans with Disabilities Act -- it is about providing accommodations for a disability -- a broad law providing accommodations for access to any program using federal money for any person with a disability -- it is not specifically about education. This is the same law that provides wheelchair access to federal buildings. Accommodations meaning how does that person access that federal program, not how does that person remediate their disability.
IEP is governed under the IDEA -- Individuals with Disabilities Education Act -- it is about establishing a written plan specifying how education and related services and support are provided for a student with a disability.
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i do believe that stress itself can be a trigger for an exacerbation in a pandas kid. my son had an extremely stressful situation at school 2 years ago, that also I think resulted in my own ptsd-like issues. I think this in itself sent him into an exacerbation that lasted about 6 weeks. he was quite healthy infection-wise at the time. I think it is due to the opening of the BBB. so -- does he always have troublesome antibodies circulating and opening the BBB sends them to the brain? or does a stressful event increase immune dysfunction in general and troublesome antibodies multiply? --- ???? so many unknowns!
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also just to mention -- not with opinion to sway or not -- we have done MTHFR, not 23 and me -- for some reason, not pulling the trigger -- my state doesn't allow, but I have figured out a way around, I think I need to just do it
anyway, ds shows no MTHFR mutation; I have single A1298C. so - nothing to do for him; very difficult to figure out what is recommended for me. I do suspect CBS mutation -- ??
point being -- a lot of people are posting that they have discovered issues with MTHFR - but it is possible only MTHFR may not give great info.
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if you do go for only the MTHFR, I would caution you to be aware of your insurance coverage for the test. even with doc orders, they can not cover and claim 'not medically necessary' or 'experimental' etc, etc. if that happens, you may end up with a test from quest that may be double what some other companies will charge that do not go thru insurance.
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teri -- sorry, I have another thought -- be careful what you wish for, right? you've hit one of my favorite topics.
do you and the school agree that she needs a 504, or have you requested the meeting and not sure if they are going to agree? you say 'we thought we'd be proactive' -- do you mean just you or you and the school?
the wording for a 504 is a student with a disability the 'substantially limits one or more major life activities'. a diagnosis does not automatically qualify for eligibility.
I believe your first meeting will be to determine if she does, in fact, qualify.
if I remember correctly, our first year, we knew we were doing a 504, so did the qualify and the writing of it in the same first meeting. the next year, b/c they had to fix the horribleness of the first year, we did a qualifying meeting to determine IEP or 504 to determine tests and then in another meeting did the 504.
you need to be sure if you are having simply a meeting to determine qualification, where they could say in their opinion, she does not qualify or also a meeting to write the 504.
Need Opinions...
in PANS / PANDAS (Lyme included)
Posted · Edited by smartyjones
qannie -- do you know of Dr. Swedo's observational study at NIHM? it was posted here a couple of weeks ago. it sounds like a really good thorough work up. he might be too old - but i'd suggest looking into it. I don't believe it involves any treatment but would give a really good idea of what could be going on.