faith
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Posts posted by faith
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my son has low titers (been check numerous times over the years, and the first time was about one month post a strep infection when he was 7). Immuno testing does not show any immune deficiencies.
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worried dad,
I know you are one who has not really had a great response from IVIG...may I ask how long ago was that now? your son was under the care of Dr. K.?
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It's about children with psychotic episodes.
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re the insurance, .. what if there are no deficiencies?
would anyone know what a HIGH igg subclass suggests? (subclass 4)....
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We use Klaire Labs pro-biotic complex and vital-plex. they both have 5 bill. each capsule and I give two. I thought that was high,but 100 bil sounds really high.
Gats mom, how many capsules do you give? was that recommended?
thanks
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okay I'm open. come on, I could use a good laugh........
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It would be great if you could co-speak with Diana Pohlman, since she actually has a recovered child, has and is followed/following more than 300 families over the course of two years, put the PANDASNetwork website up, flown all over the country to meet with most of the leading treating physicians to guide, inform and consort with others, and has helped so many of us during her own personal life story. It would be so gracious of you to broaden the message with someone who has actually been "around the block" so-to-speak with all this. You could hit it from the "more socially acceptable" side, like what we are seeing on TV, and she could hit it from the less "pretty" side, which hits a home-run for so many of us. Why reinvent the wheel when she's already had it rolling? Just my 2 cents. Hope Lauren continues to get well.
I agree that Diana is the one who has already put in 'long hours' of work and compiled all the information, offered support and guidance and hope to so many parents, and I think many here can attest to her knowledge and sincerity, not to mention that the PANDASnetwork.org was started by her and other parents from the PANDAS forum. You have spoken with her I assume?
So I guess what is meant by the the 'human aspect', would be emphasis on the more severe cases those with symtoms on the far end of the spectrum?, and the impact it has on the family along with their struggles to find help and answers for thier child? might be good to tote along a parent who has been thru all that.
Oh, and could you tell us why you opted to travel 'across country' to do IVIG and not with Dr. B.? did you say back a ways that you were to see Dr. Latimer regarding PEX, didn't you say Dr. B. recommended that? I gather that you are having your Today show is documenting your dx and treatment for a later story?
Well good luck!
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christy,
who said the carnitine helps with ticcing, the doctor, or from here?
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So worrieddads boy is having some thoughts of people watching him, and that is the distraction. Is it OCD, not sure, but something to think about.
Faith
Just a note - it's my son who had the feeling of being watched, not worried dad's - and yes, that incident was certainly OCD - a checking compulsion. But there are other times he doesn't seem to be able to focus or sit still and will be near tears because he doesn't understand what he's supposed to do on an assignment (even tho when he's healthy homework only takes him 5 minutes). So in our case, I think there's both, along with hyperactivity/mania. So we're trying to help my son learn to cope with both. That's why I was wondering what tricks others might have up their sleeves.
oh, sorry, I thought you were qoting that whole thread from worried dad.
I wish I could give advice about the reward system, nothing like that really helps with my son, he manages to get around it all, like if he doesn't earn it, all I'll hear is "mom, give me another chance, give me another chance, can I have another chance...".... ugh. drives me nuts, he just opens up a whole other can of worms. But I really like that analogy you gave to the teacher, the incentive does have to be set pretty high for someone to step out of their comfort zone.
I guess my point was that once I talked to my son about what these distractions were all about and question if this was the reason he was fooling around and not paying attention, it kind of releived him a little, in the way that he was able to sort of come clean as to what was going on in his head and why he was having this trouble. Had I not sat down and started talking about it to him and asking if I was right that the ocd was interfering, it helped 'me' to understand more what was going on and that he truly couldn't help it. I knew he was erasing, but did not know how much of an effect that one thing had on his ability to stay on task. All I did was get aggravated and yell at him before. It was the first step that at least helped me to get the ball rolling being able to communicate with him about this, keep the teacher informed of what was going on, as well as figure out that he really needed some formal therapy for this. He did not really know what OCD was before this, I had to explain. It has really helped for this to be out on the table for us. So hard for these little minds to understand their what is going on in their own little world, the anxiety they must feel for not understanding what or why they have these thoughts.
ha, sorry if I can't help with anything, but it might help for some to figure out how their child's symtoms of one thing, i.e. OCD, can snowball or blend into others.
Faith
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please everbody see my entry to the forum under ocd .my son 27 just got ivig because of Autoimmune Encephalitis.On 5th treatment of IVIG out of 15 and severe OCD GONE.New person !!!!!
richae,
just curious, why did you hve 15 IVIg treatments if he was good on the fifth. Is that the only symptom your son has had? how long now did he have ocd or other symptoms? And how long would you say his OCD is gone? I did read your other post, I see he has had some other autoimmune problems and health issues. but just wondering how long you see this improvement...
thanks so much
Faith
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When we had a setback in January, my son had terrible ADHD/OCD mix. One day, the kids were supposed to work on independent work for 30 minutes and the teacher emailed me, saying that she could not get my son to concentrate for more than 30 seconds at a time, despite constant reminders. When I asked him about it later, he told me he kept having the sensation that someone was staring at him and he had to keep "checking" and looking around the room to make sure no one was staring. As soon as he started back to his work, the feeling/compulsion would come back. So this was OCD presenting like ADHD. Other times during homework, he seemed to have genuine ADHD and could not stay focused - very frustrating for both of us.
What stands out to me here is that this may not be exactly ADHD (in the sense of not being able to pay attention), but actually OCD driven. Maybe some ocd that he's had in the past has gone, but what is described above, sounds like a form of ocd to me. So what I'm saying is that it may not be that he is not able to pay attention and that that part is getting worse, but that the ocd of these thoughts are interfering and causing him to 'appear as if he's not paying or unable to pay attention'.
I kind of went thru this with my son. We felt that he had some ADHD (non hyperactive) as a comorbid issue, but what I came to realize was tht it was obvious in class and at home, because he had the OCD of erasing and retracing of his letters. What I came to figure out (long story short) was that he was so uncomfortable and had so much anxiety about knowing that he was going to start erasing and feel uncomfortable and bothered by his feeling of wanting to erase, that he would basically 'avoid' or 'delay' the writing, and this in turn, made it seem like he was not up to snuff, he would do everything but. he would fool around, get up, allow himself to get distracted, look for something to eat or drink, go sharpen his pencil, anythng else would be better than the anxiety he was about to feel when he picked up that pencil.....
He is now doing ERP therapy for several weeks, and I can see already how he is much more able to complete his work more timely, one because he is not erasing or retracing (as this is part of the therapy, to 'practice' not doing it until he can see its no big deal or that there will be no consequences, little by little, it supposedly gets easier), and two, he can get to the writing faster and just do it, because he's not worried or having as much anxiety about what will happen when he gets the pencil/pen in his hand, he's more in control right now. Not saying things are perfect and he probably still has some other attention problems, but I can see that alot of it had to do with this.
So basically I am feeling that for some, there may some OCD components of the difficulty of paying attention, some anxiety that is not visible on th surface. So worrieddads boy is having some thoughts of people watching him, and that is the distraction. Is it OCD, not sure, but something to think about.
Faith
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Buster,
sorry, I am confused, .. are you saying the subsequent tests to replicate the Swedo study was done on rabbit brains and not real patients? sorry if I'm getting this wrong....
I thought Kurlan described on the Webinar how they picked controls that were matched ie. age, symptoms, etc......Is that the study you are referring to, or somehting else? .... rabbit brains? lol, how do rabbits have symptoms of ocd? -
hi bonnie, how are things going?
while you are wondering about the Dtap, (I think thats the one cp's son had), I don't want that one either and we are coming up for it. My son recently had some immunity bloodwork done and on the panel it check for diptheria and tetanus, and apparently he still shows enough immunity to it. that just leaves the pertussis, that one wasn't on it. I wonder if they will accept this as proof of immunity? I don't think this is a ususal test, but we were doing somethe on checking antibodies for something else and that was a part of it. Really i was going to try and claim rel exemption, I have the forms, but even if they accepted it, it still leaves the pertussis. would anyone think just having the pertussis alone could be promlematic? don't even know if they give it alone anyway. but interesting that he showed enough immunity. I'm thinking if that is the case for some kids, maybe that is why the vaccine causes some problems in kids with tics, maybe boosts too much of an antibody response. don't know.
Faith
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richae,
what was the ivig for initially?
nevergiveup,
how long ago did your child have IVIG? are you sticking with the one, or monthly? have you seen some improvements?
thanks
Faith
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syndony,
could you tell us more of your experience with NAET? i.e. what syptoms and what treatments?was this for yourself or your child?
thanks
Faith
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Well, we got the test results back yesterday, are now officially part of the growing positive Myco Plasma IgG group (negative IgM). I wanted to ask if anyone who has tested pos. for MycoP igG and has their child taking Biaxin - how are they doing? The only updates I've seen so far is 2-3 days in. So if your child has been on it longer and you could share, I would so love to hear any changes you've experienced. I'm also wondering - is there anyone out there who has been tested for Myco P and it has come back with negative/normal IgG???
We tested negative. .01 Igg and .07 IgM. I was really surprised. After talking with Dr. T and discussing how much worse DS gets when he is sick, he still felt like a trial of Biaxin was in order so we start tomorrow. I will have to tell DS about the cough. I hope his tummy can take it. He's done well both on Omnicef and Augmentin, but after being on a month of abx, I'm worried it will affect it. I've got him taking a high dose probiotic twice a day, hope that's helping. He really likes kefir, so I will keep giving him that as well.
I'm hoping for quick results as well. This week has had me in tears far too many times.
simplygina,
anything interesting since starting the biaxin? know its only been a couple days, but curious. we are also negative on myco igm......you did not have anything remarkable on the other type abx before this?
thanks
Faith
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I agree, Vickie, its really all political I think, in what certain organizations will support. Afterall, I guess it all comes down to who it will really make money for.
Sometimes its really not the 'cause' at all, but the money that some will make by 'promoting' it. .. sad, but true.Speaking of television,... Dr. T., do you know of any upcoming segments re PANDAS? I thought someone recently posted about something being on tv next week, but I can't find it now. thought it mentioned a doctor, would you know what its about?
Also, what will you be speaking about at the Autism Conference? Will you be talking about some of the things and interesting findings you've mentioned above?
Thanks!
Faith
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So just to make sure I got it right, she has had tics before the flu shot, and you were at the docs to discuss a head tic? was it as frequent as the tics are now? I hate to say, but if there is an increase in frequency or intensity that you had not see before, or a new tic, it could very well be a reaction to the shot. this is just my opinion, and of course could be coincidence, but there are many here who feel their child's tics ramped up big time after a vaccine and/or flu shot. not familiar with swine flu shot tho, is that one considered a live one? Is that how it is given, in two doses? really, I am not a fan of vaccines, not in general, but in kids who are confirmed ticcers.
Maybe someone else here could comment on if you should get the next dose?
Faith
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Fixit,
how are things today?
the part about him not snapping and being nice? is that something that you never see? could you attribute that to a success? I mean, my kid has good days and bad days, I'm not sure I could successfully use that as the gauger, its mostly the vocal tics and ocd that I would look at, I'm not sure the other issues would resolve so quickly as some of them are kind of 'learned' behaviors, they sort of become part of who he is, I doubt that would change so fast. but the tics or ocd, that comes from urge or feeling, so if that resolved or got better, I would know it right away, and so would he. If he was nice to me tonight, it wouldn't mean anything, because he can be an angel and then he can be the devil, depends on what the situation is. ... also, if it were a worsening before better, I would think all the symptoms would be worse,not just one, or rather, I wouldn't think one thing would get better and not the others, just my feeling.
we are on around day 12 of augmentin and I admit I am just giving some extra now, I just want to see what happens and then I might have to move on to something else. so far tho, I am not seeing resolve of tics.
Faith
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smartyjones,
I'd say that is pretty typical 5 year old behavior and I wouldn't read too much into it. I say every little boy has to get into some trouble sometime!
. he could have been a little loud and rude as a little feeling came over him of not being included, I could see that happening. he's only five, this is just the beginning of the 'boy' stuff, really, lol. Faith
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heidi, hello,
I see that you are noting that your daughter has had some tics before and they went away for a while? I'm not sure from your post, do you say that she DID have the flu shot, or didn't wind up getting it? how long ago was that? sometimes that could stir things up for a bit.
hang in there, it may take a bit to get a handle on some of this.
Faith
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melton, helllo and welcome,
How long is your daughter on the adhd meds? do they help in any way with that?
could I ask if your daughter has had any other tics before, maybe something you didn't realize was a tic, maybe eye blink or anything else when she was younger? I know some say that these meds can bring out some tics, just wondering if you may hve noticed anything in earlier years, however mild? Is the clonodine because of the tic? clonodine is supposed to be for tics.... did it help?
I think a few here have tried the focus formula, sorry, I don't have any experience tho, maybe someone else does tho.
Faith
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Fixit,
sorry, could I understand better?
you started clarith for mycoplasma? tht was found in your son recently? how long on that right now? how long is it supposed to be, an month?
why did you do a steroid burst? is the screech a new type vocal?
when did the vocal screech come on? before, during, or after the steroid?
re the worsening before better, does this mean from the abx? how many days on abx right now? and if it does get worse before better, is there an indication of about how far into it that would happen if that be the case?
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faith - just curious b/c i like to keep up with your story -- is this a new abx that you've never tried before?
on a different line, you did naet for quite some time with your son, right? but didn't feel it was so helpful?
The rifampin is new, but we have done a month of augmentin before. Naet did not seem to have any effect on his tics so far and we treated a good number of things for about 6 months. I'm not against trying again and treating some things that I hadn't got to yet, but just have so much on the plate right now. If that ever happens, you know I'll update.
I thought Kurlan described on the Webinar how they picked controls that were matched ie. age, symptoms, etc......Is that the study you are referring to, or somehting else? .... rabbit brains? lol, how do rabbits have symptoms of ocd? 
. he could have been a little loud and rude as a little feeling came over him of not being included, I could see that happening. he's only five, this is just the beginning of the 'boy' stuff, really, lol.
Pressure to do 2nd MMR
in Tourette Syndrome and Tics
Posted
ameecram,
confused....why would he need the second one if it does show enough immunity?