faith
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Posts posted by faith
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harmony,
I really feel for you, I've heard my kid say something like that too.......
Is your boy on longterm abx, or he just gets a round whenever he gets these sinus infections or other illness, sorry, can't tell from the post. Do they alleviate any of the neuro issues?
I havn't heard of the bacteria testing you described in the first post, why did they do that, under whose instructions? do they do that for everyone? it sounds interesting. does the doctor think it means anything that the strep was found in the mucious, but not in the throat? is that usual?
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Melanie,
where'd you get this done thru? how did you get these results? did the doctor explain anything?
I'd be interested to know too.
Faith
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Now I'm just curious, sorry if this is a dumb question and has been addressed before.
but if the XR is supposed to be better because its a high dose without too much of the clav acid, (and that's why the regular augmentin isn't good to go with higher doses, because you don't want the too much clav acid)....
then, what about just plain amoxycilin? if augmentin is amoxy plus the clav, then why not just use the amoxy (which doesn't have the clav)?
don't know if that makes sense, but I wonder? what do you all think? or am I missing something?
Faith
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nice peg, I do hope this helps some.
how is she doing presently?
Faith
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Jennifer,
does it have to be private school? I don't know if you have this in your area, but here, our district has classes inone of the schools for the special ed kids. now some of them are autism, yes, but I know two parents who put there kids there because of other issues. one child had some problems with what the school thought was bi-polar and they felt he would fare better in the smaller class setting. The other was a girl who had a number of problems with learning, so again, the smaller classroom setting and attention were much better for her. In other words, they wouldn't get lost in the shuffle and receive better one on one attention. .... has the school ever suggested that type thing? (I beleive you would need a letter of diagnosis plus go thru the school testing for this, but it is paid for thru the district, I believe).
Faith
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I'm still figuring out all the pieces to this PANDAS stuff; what is "Y-BOCS"?
MOM, really!!!...............(lol, thanks, I was wondering too...
)WD, thanks for posting that. So glad to hear things are improving for you.
Faith..
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Hi michele,
I am inclined to think this is more jus the phase type thing that boys at this age go thru. I don't see it as verbal tics unless he is repeating one word or phrase over and over. I dont think this is something that is a tourettes behavior either. does he think this is all funny? my son is 10 now, and I know he and his friends get a kick out of saying words they know are funny and they shouldn't be saying. I don't see it constantly, but they manage to get their kicks, when they first learn the word penis, its a riot to them. and somehow my son learned the word, get this "Fagina"...lol, that's how he heard it, so he'll tell me, mom I know what a "Fagina" is.....I don't correct him, I like to leave him in the dark, lol.
Really I think you might be reading too much into it, he's probably at that age when they first start hearing this stuff, they know its not acceptable in school or at home, but they try to push the limit. What does he do when you admonish him? I would just be like "hey, we don't say that, its not polite", and go from there. Once he sees its not that funny to anyone else, he'll probably get over the phase.
hope that helps.
Faith
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Hi Christy,
I understand about the muscle testing, but is there a treatment here that you're inquiring about? Is this NAET? is she doing any kind of treatment to eliminate the sensitivity or the allergy? interesting about the corn vial,...why did he have to stay home the next day?
thanks
Faith
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Does anybody know about this? So many labs were taken that I've lost track of what's what...
hmmm...uh, uh, ... no...sorry.....................bye..............
Are you getting these results sent to you, or are they from your doctor first? did he explain anything? were there any specific things they were looking for in the Igg's and Igm's. ? just curious how that works, we just went in for the blood draw on some of these things. how long did it take for this to come in? a week, two weeks?...... NINE vials of blood from my 54 lbs kid!
Faith
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lyme mom,
would you know off hand? our testing said "lyme antibodies" and then antibodies for ehrlechia and babesia. and then underneath, Western Blot? is that the one you are mentioning that is an okay test besides the Igenex? this is at Labcorp? we didn't get results yet.
Michael, yea, I was thinking the same thing as lyme mom about your symptoms and lyme connection. ever been tested?
thanks
Faith
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Hi Judy,
So glad to see some things are getting better and that you're feeling more hopeful. great about him wanting to see his friends. Is the crying a depression thing, or is he upset about the ocd? sorry, I didn't quite understand, do you mean he's stopped some obsessions, but the ones that remain are more intense? or are they new? I know you've said in the past that the ocd therapy didn't really seem to help him, but maybe now he might be in a better place to work thru it? could you get him into the therapy again instead of trying to work on it yourself?
blessings for continued healing,
Faith
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All I can say is you guys are lucky that your kids are open to this. my son gets so insulted when I try to give him the idea of masking a tic. I'm just trying to help, I just try to ask him if he could "do it like this' or "try to make it look like you're doing this", etc. its hard because sometimes his vocal can be pretty noticeable, and I just want him to be aware that he may have to try to do it a little lower when in public.
This week he'll be starting ERP therapy for OCD, and I wonder if cognitive behavioral therapy is part of it? I know this doctor does that, so it will be interesting to see what they do with him. I picked this doc because he is part of a group that focuses on ocd, tourettes, adhd and body dismorphic disorder, so hopefully it will be a good fit for my son.
Tigger, I'm glad you are saying that your daughter's confidence has improved, I really hope that is one of the things that comes of this therapy for us. he's pretty confident by himself, but I know his tics, the ocd and other issues are starting to get to him, every now and again I see him frustrated that he has all these things and wonders why. (why do I have to have a, b, c. etc.?)....
Faith
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Airbucket,
oh I'm okay enough, still hving some issues here, and basically still trying to fix things.
What do you attribute to the tics waning for that stretch of time? that's interesting. but I see you have some other issues that vamped up, some rage and behavioral? that can be tough. was that ever a problem before, or just this past summer?
tell me more about the rash? was he ill and had that? or it was just a rash? is 5th the only thing they tested for? any possibility of lyme here? that could be a sneaky one. I've been reading a little on it only because we're having some immunological bloodwork done on my son and that was one of the things we are testing, really at my request, just trying to cover some bases here. looking a little at the PANDAS angle, but we are not exactly a typical case. we've got some ocd as well as tics. I don't feel like they are that mild anymore... I'm just trying to look at it from a few different angles. you never know what you may uncover if you start looking.
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Cheri,
thanks for your info here.
you mention some things not being good for autoimmune (i.e. grapeseed, probiotic....).. would you know why probiotic would be on that list? why would that not be so good? is that an immune booster?
thanks.
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Airbucket! how the heck are ya!
glad to see you here....well, you kinow what I mean...
can't give you any advice, I'm still looking for some myself,
Is it an abdominal in and out movement? or is he breathing fast like hyperventilating? or is it like he's trying to fill his lungs with a big breath? (the last one I recall doing as a kid for a bit). But it sounds good that his tics have been on the wayside for a while. Has he been sick lately? how are the other issues?
Faith
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could anyone say how long it takes for the clonodine to go to work? a day or two? or is this something that has to kick in after about 3 weeks or so? just wondering.
thanks
Faith
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I really liked the discussion here and am still looking at virals and 'other' infection as possible causes for my son. Also bringing it up again, as I find the info brought up by 'lyme mom' as interesting. I found some things interesting from a link she posted in another thread that kind of ties into what we were trying to theorize here re microbes, viral, etc.
The causes of most psychiatric illnesses are unknown. The catecholamine hypothesis does not adequately explain the cause of abnormal neurotransmitter functioning. Mendel stated that human traits are determined by individual genes that function independently of other genes and environmental influences. Koch believed that many human diseases are caused by microbes that exert their effect independently of other microbes, environmental factors, and genes. The cause of most mental illnesses cannot be explained by neurotransmitters, genes, or infections alone. Instead, as stated by Yolken,8most common human diseases are caused by the interaction of environmental insults and susceptibility genes.Many of the susceptibility genes are diverse determinants of human response to environmental factors, including infections, and prevention or treatment of the infections may result in the effective treatment of complex disorders.
Neuropsychiatric disease is often associated with an interaction of environmental insults and susceptibility factors that frequently results in a pathological interaction including inflammation, oxidative stress, mitochondrial dysfunction, and excitotoxicity, which leads to neuronal dysfunction
I mentioned in this thread also that I was going to do a trial of olive leaf extract, so just reporting that I have given it for about three weeks now. 1 capsule per day at 250 mgs. each for about two weeks. then I gave two capsules each for another week. Don't know exactly what I hoped to do here, but syptoms of tics still remain. I may continue with another bottle or liquid extract, I don't think it had any 'adverse' effect, so no harm in keeping on.
Also, just to updae, I've gotten our DAN doc to give us a good immuno blood work up, as well as lyme antibodies, Western Blot, and a few other things, so maybe something interesting will show up in the way of something other than strep being a factor. This blood draw was such a pain in rear, twice I showed up at a lab for the draw, waited for an hour in both, and one tells me the don't accept my new insurance (UHC), and the other didn't want to do the T&B cell function on a Saturday, because the test has to be done right away and they may not be able to get to it, so come back Monday....
All this is enough to make you want to go hide under the covers somewhere, so many doctor visits, so many tests, so many different answers from each, or no answers at all, we all know we'd like to have those answers yesterday. Choreographing all this, I don't know if I'm coming or going,.... or if I went...
I am moving on to the best of my ability, all while trying not to make my son feel like there is something terribly wrong with him. I want to find out as much as I can and manage his health without making him a nervous wreck, he is afterall going on 11 and is beginning to understand all this.I'm doing what I can with grateful guidance, input and advice from all of you here. I admit, tho I am just cautious and have a need to understand all these things before I come to any conclusion. I'm not as confident as some here, but hopefully after I am armed with as much info as I can find, I'll be able to make the right decisions for the course of treatment for my child. With this, I hope that my own experience and 'questions' will somehow help even one other parent here with the answers for their child as well.
Faith
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lyme mom,
thank you for this. I do have some other questions for you, but just wanted to copy a few paragraphs from the article you linked here, as it kind of ties into a thread discussion we had a little while back about 'microbes' and how they play into all this, especially when some of our kids don't have a particularly strong link to strep as the catalyst. I'm going to copy this on that thread as well, its kind of an interesting discussion and maybe you might like to read it over. The last paragraph here that I bolded seems to reiterate what I kind of believe, that these microbes have an influence here, perhaps an initial assault, coupled with genetics, predisposition, environmental assaults, etc., which creates a susceptability in certain individuals. I think all these factors are why many doctors don't really have a handle on what the main cause is, because there really isn't a 'main' cause, its a combination of things. I want desperately to understand all this, I think I have a small handle on it, but then at a certain point, it all falls to pieces, I can only go so far. I'd certainly like to hear more of anything you know regarding lyme and 'other' possibilities causing these symptoms in our kids.
could you tell us how lyme was diagnosed of found in your child and what the symtoms were? is that your experience? sorry, not clear on your story. thanks......Faith
The causes of most psychiatric illnesses are unknown. The catecholamine hypothesis does not adequately explain the cause of abnormal neurotransmitter functioning. Mendel stated that human traits are determined by individual genes that function independently of other genes and environmental influences. Koch believed that many human diseases are caused by microbes that exert their effect independently of other microbes, environmental factors, and genes. The cause of most mental illnesses cannot be explained by neurotransmitters, genes, or infections alone. Instead, as stated by Yolken,8most common human diseases are caused by the interaction of environmental insults and susceptibility genes.Many of the susceptibility genes are diverse determinants of human response to environmental factors, including infections, and prevention or treatment of the infections may result in the effective treatment of complex disorders.
Neuropsychiatric disease is often associated with an interaction of environmental insults and susceptibility factors that frequently results in a pathological interaction including inflammation, oxidative stress, mitochondrial dysfunction, and excitotoxicity, which leads to neuronal dysfunction
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-WendyI agree with Buster. Clinical presentation, lab work and CaM Kinase as a confirmatory test to everything you may already know.wendy,
I could be reading it wrong, but I don't think that's exactly what he said.. You are very confident in the cam k test, but I do think you hve to be careful of stating to others that it is a 'confirmation'.....
Also....what is the situation for your children is not the case for everyone else, all cases are unique in their own way and there are alot of variables and circumstances to consider for each of our kids. I appreciate your dedication and sharing of your experience, truly I do, but somehow feel compelled to say that 100% symptomless may not be possible for all our kids, and if that be the case, we may have to, yes, "relax", just a bit and thank God for the beautiful and wonderful creatures that they are, JUST the way they are, and not spend every waking moment worrying about the worst case scenerio. your child is no where near that. I hope everyone gains as much knowledge as they can in order to help their child, but remember, and we've said this before, there is no 'one size fits all'... that's it. sorry, I'm just speaking for myself here, I'm doing the best I can.
Faith
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hi bev,
I can't say much about the clonodine because I have not tried that with my child, but I do know it is quite possible for them to become sleepy on it. I think some hve found starting at a very low dose and giving it at night might alleviate that symptom or at least get it to work in your favor. you may have to experiment somewhat to find which dose and what times to give it. again, I don't have experience so that's all I can say.
Edit: I see rysmom has replied, so she gave you her experience of the dosing and timing....
don't know about the patch, but CP on here has tried that in the past, so maybe she'll give something about that.
Your son does not sound severe, no. those symptoms are mild, however, I know that when one tic vamps up a little, it may seem that way to us. I believe tho, that we as mothers, probably see way more than others see and pay attention to. they are not looking at your child for long times at a stretch, so many things may go undetected as an actual tic or repetitive behavior.
What is 'hypo', ?..do you mean he wakes up and hyperventilates at night, as from anxiety?
don't know anything about celiac and diabetes, (but I know someone who might, lol..
)One other thing,...when you say the tics have gotten worse lately, do you mean in the past few weeks, or just tthis time of life in general? I see you are using omega 3? some of us here feel fish oil seems to cause an increase in tics, for what reason, don't think we know. By all accounts, it is a good supplement and should provide benefits, however most probably stop using it if it seemed to cause an increase. It may be an initial worsening before getting better, don't really know, so you'll have to weigh how you feel about that. Do you feel the tics started to worsen after you began the omega 3? if so, this supplement may be the culprit.
Sorry, don't recall if I asked this before, but since you say he is 11, has he had the vaccines that are given at this age? Tdap, varicella, flu shot? if so, how long ago? this can be another factor that may cause increase. basically, anything that compromises the immune system.
hope that helps.
Faith
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Wendy,
don't know if this helps at all, but really your children will be fine, if you don't mind my saying, their symptoms are not so bad. I know when they are little, we worry incessantly about them and what will be. Lord knows I did. What I think has saved me is that the years have gone by, (and you know I've been dealing with symptoms of everything for many years), but I've at least seen that whatever symptoms he's had, we've gotten thru it and things are not as horrible as I feared in the beginning. We've certainly had our low times, but they bounce back and things never got to the horrible place I thought. my son is generally happy, has friends, is healthy in other ways, is functional in school, does fairly well with his grades, can participate in sports if he wants, etc.......sure my heart is heavy for the times when things arent' faring aswell and I just wish and pray it would all go away, but we take one day at a time, and we manage it.
You're gonna be okay. Just as you feel that I should be less fearful of forging ahead on some things, I suppose I kind of wish you would try to relax a little more. between the both of us, there's gotta be a happy medium...........
...(and I know just zee place.......... .)..cheers!Faith
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Doug,
I would get a second opinion as well. your doctor has stated he never seen PANDAS and does not know much about it. So he is just making a blanket statement that if you want to avoid strep, then get the tonsils out. he is assuming that you want to avoid strep because you told him your daughter has PANDAS.
you say your child doesn't really have problems with strep in the past and titers are low. We have the exact thing as well.
However, we've recently gone to an ENT, but my son's problem is large tonsils, with some breathing issues at night. I too wanted to see if there was anything I was missing regarding these big tonsils and swollen glands that he always seems to have. our doc knows PANDAS and did not think strep issues were our problem. he also stated that it seems to go both ways, some (I am guessing who have strep related problems) have fared well, and some have not, in other words, didn't help symptoms, or didn't prevent future strep. You can STILL get strep after the tonsils are out, and having them out does not guarantee anything.
That said, we are contemplating doing the T&A and probably will because my son has the large tonsils and swollen glands and we see he has breathing problems while sleeping (apnea), along with being underweight for his age, (sometimes large tonsils cause low appetite due to uncomfortability eating and swallowing) so hoping to alleviate those problems. (poor breathing/,sleep, poor eating) We are not doing it for PANDAS reasons.
Faith
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hi tigger,
There is no real test for PANDAS, but you can have the ASO and Anti Dnase titers tested thru bloodwork just to see if there is any rise there. that will tell you if infection in the past is a factor, and may give some doctors something to go on to believe that strep is a part of this, and then may give antiboitics more freely.
But just curious, as you say she's had tics since 7 and is now 12? has she had recent vaccines, the ones that are common at 11 I think? Tdap, varicella, flu shot?) I strongly believe vaccines can exacerbate symptoms in already suseptable children (those who already may have some tics or ocd).
Faith
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We are on the way other end of the spectrum, so can't relate at all, lol.
but I'm curious too, if any meds were started in the last few months? that could be a side effect. OR, just being 13 and going thru the spurt of puberty. but 20 lbs in five months? lol, my child has not gained 20 pounds in the last five years!.....
Faith
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Moxatag
in PANS / PANDAS (Lyme included)
Posted
I have some questions here too, but I'm afraid I'll get yelled at if I start asking.