bobh
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Posts posted by bobh
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Sorry to hear about you and your grandaughter's struggles.
For several years, it was impossible for our child to get to school, because of his severe OCD. We chose to homeschool (mostly using online resources) - it was that or nothing. Different parents, and situations, have made for different coping mechanisms (e.g. type schooling in the search box at top right, once you are in this forum).
If the issue is just October, you might approach the school for some kind of leniency/temporary school at home option. Many parents have had discussions with schools, with varying success with accomodations. It is quite a chore to educate schools on PANS/PANDAS - it depends on their previous experiences.By the way, probiotics consistently made our child worse. I have found this to be the case for a suprising number of PANS kids, but by no means all. Many kids aren't really checked for this (by on and off several times) - the assumption is often just "probiotics are helpful". Of course, that doesn't explain October, but our kid had lots of flares at different times and for different reasons, but regardless, his symptoms were less when he was off probiotics, whatever his current state.
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I've gotten a comment in another place where this is posted, that some might balk at the dropbox technology of the link in the post, and prefer to email data instead. By all means! My email address is also in the post.I am not expert in security, but for what it's worth, I believe that email is less secure than dropbox (i.e. it is easier for someone else to grab your data). To pretty much eliminate that problem, you could send it anonymously, which by email would mean creating or using an email address that can't be traced to you.
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You can see a list of 5 for Colorado here:
http://pandasnetwork.org/us-providers/#COLORADO
No guarantee that any of these will work out well - you might want to check for references or ratings some other way. -
Abdominal pain is so common among PANS kids. I recall seeing a video of Dr. K. (he's in Chicago) describing how they went down the esophagus on dozens (maybe over 100?) of PANS kids with a scope, trying to find something that might explain it - but they didn't find anything. Our kid had frequent stomach aches - but not continuous as you describe for your daughter.
I have heard speculation (from one doctor that treats PANDAS/PANS) that a "reboot of the gut" by using antibiotics may be a good thing. And I have heard lots of talk on these kinds of pages (and facebook groups) about how bad abx is for the gut microbiome.
If you are using a probiotic in between the abx doses, beware: some kids (mine, but others too) get worse on probiotics. -
You are invited to participate in a research study titled “Genetic Patterns Among PANS/PANDAS patients”.
This study is being conducted by Bob Horvath, Mark Moeglein, Michaela Holden and Sam Keating. We are "citizen scientists” with some qualifications in statistics and data manipulation, and direct experience (ourselves or family members) with various autoimmune or immunological conditions and/or autism, all of which we suspect are related.
The purpose of this study is to find out whether certain variations in DNA occur more commonly among PANS patients than the general population. If we find some, we will let you and many others see the (aggregate) results, and hope that a finding will spur further research into the biological processes, and ultimately, in the long term, possibilities for remedies for the disorder.
Participation in this is entirely voluntary. You can choose not to participate at all, or to participate anonymously, or with your name attached to the data. Either way, there will be no effect on your relationship with the researchers, or any other negative consequences with not participating.
You are being asked to take part in this study because you are a parent of a PANS/PANDAS child, or you are an adult that has suffered with PANS/PANDAS symptoms as a child, or as an adult.
If you agree to participate, you will be asked to click on a link below and upload 23andMe or similar genetic data for one person (at this time, please don't upload multiple family members, just the one). You may also email your data (see below).
The data will be collected regularly from the upload site, with a January 19th, 9pm EST cutoff time for data used in the study. Data uploaded after the cutoff time will be safely stored (with no direct identification of participants) on two computers only, for possible later confirmation of any result with the initial data. Even if you give your name, the data will not contain that name, but be coded before being processed. After the initial upload and the coding step, no other person, website or online service will have access to your data with your identification attached to it. Your data will be uploaded to GEDmatch (without your identification) in order to obtain ancestry, and to confirm no close relationships (>3%) to other participants. No genetic disease information will be extracted from participant data.
For those that contribute anonymously, the only link between us and you will be a fake name and email address that you give at the upload site. You are free to withdraw from this study at any time. However, once you submit your data, the only way to withdraw your anonymous data is if you contact myself (Bob Horvath) and reveal your fake name, so that I know which data to remove. This step could reveal your identity, but your data will be removed from the study.
Study data will be stored without names in digital format. One copy will be on a computer in Ontario Canada, and another will be kept on a computer in Oregon, U.S.A. Only Bob Horvath and Mark Moeglein will have access to this full data. Aggregate results for the analysis of the data will later be made known publicly.
There are no known risks associated with this study, beyond any risk there may be associated with the data existing (e.g. on the originating site, such as 23andMe). While you will not experience any immediate direct benefits from participation, information collected in this study may benefit you and others in the future by helping to determine genetic factors associated with PANS/PANDAS.
If you have any questions regarding the survey or this research project in general, please contact the principal investigator, Bob Horvath, at bobhorvath@alumni.uwaterloo.ca
By clicking on the link below to the upload site, or sending data to the email address above, you are indicating your consent to participate in this study. If you want to contribute anonymously, submit only a fake name and email address at the link. If you use a fake name, make it unique (unidentifiable by others) and make a record of it, in case there is any need to try to contact you (via a comment to this poll in the online groups it is listed in).
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Oh, a loose or lost tooth is a very common flare source. That would be my bet.
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Our case is not the same as yours, but we were long term on probiotics (2+ years) before we discovered/proved that they were making our son's condition worse. So, you might try cutting those out, especially if it is not a recent add. We showed that well-known brands (not the kinds with strep) made him worse.
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Most defininately, probiotics make some PANS kids worse. I suspect that phenomenon is under reported, mostly because people don't want to believe it, and tend to suspect something else first. We proved it with our kid, and no, the ones we tried did not have strep in them, they were well-known brands, quoted here on these pages, and recommended by many.
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I'm sad that you had no response immediately after your post. You have probably discovered by now, what is known as the herx reaction. It is actually a good thing, showing that the abx is working. How are things now?
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mlee, there is a rumor among MD's that some abx's might be anti-inflammatory as well as fight infection. That helps them explain why they work so well sometimes. But I don't think that this aspect of some abx's has been well understood - I see it as speculative (not to say it isn't true).
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We have not gone through similar, so can't comment too directly, only on your statement "...apparently in true PANDAS cases it [OCD] accelerates anxiety and vice-versa?"
Well, I would say that OCD, if it starts more slowly in a PANS/PANDAS child, is somewhat calming at first, when it is not otherwise debilitating or noticed by others too much, because there is some satisfaction derived from "repeating it right" when they finally get there. But when it grows much more significant later (or for any person with severe OCD) the sufferer fairly quickly becomes exasperated with how debilitating it is, and sometimes satisfaction is eluded, and so of course that creates plenty of anxiety. So I think your statement is fully true for those with very quick onset of PANS/PANDAS, and eventually true for all.
If you can get and afford the ivig, the potential benefits probably outweigh the risks (in my mind). -
Once in this forum, type "California" in the search bar (near top right), and you'll get at least one thread asking the same question.
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We had great difficulty with some blood draws.
That advil experience is a clue towards an inflammatory issue. It's not good to give Advil over the long haul, which is why it is known as a "resuce med" - used in the short term for the worst "flares" (does your child get worse at times, or pretty steady in symptoms?).
On abx - many have struggled getting it - all I can suggest is to try other PANS/PANDAS-aware doctors. -
We have not had this experience with our PANS child, so can't really give advice from that point of view.
Just a wild thought - have you considered lowering doses, rather than upping? I know that Zoloft dose you mention (8mg) is very low, but we were actually lower, and the first time we used it (at 2.5mg, in suspension), it had dramatic effect. If he is sensitive as you say, going in the lower direction might have a positive effect? Whatever the change, slow and one at a time is what I would want to try. -
I would tend to believe not co-incidence.
Nystatin is another anti-yeast drug. I find it easier, safer and much easier to just try it (it doesn't absorb into the bloodstream appreciably, that is why it is safe) than to draw blood (which in our case, was a significant hardship) to have a test done. -
I don't know Mepron, but it is my own thought (only) that the anti-yeast drugs (nystatin and diflucan) might be a bit better taken some time after any abx. My thinking there is that when the abx clears out gut bacteria, that is when yeast has an opportunity to jump into the cleared out spots. So taking the anti-yeast some relatively short time after the abx should be better than taking it some relatively time before. But it is probably not a big difference from taking all at once.
I don't have any thoughts on am vs. pm for any of these (and, I don't know Mepron). -
Our child had severe symptoms for about 4-1/2 years (not including a 1-1/2 year period of time where he was almost normal), and he has been about 90% for the last year.
It would be key to root out any chronic infection, as might exist for example in tonsils. That could be a lot of things - at one point (for our child), it was a mild case of gingevitus that really ramped up his symptoms.
I didn't believe that the Cunningham panel was worth the $, but I never had a health care provider or system (I am in Canada) that cared to look at it. -
At http://www.pandasnetwork.org/research-resources/us-providers/ , there is a naturopath listed in Seattle. I myself can't make any recommendation, except that I myself would want a health care practitioner that can prescribe antibiotics and nystatin.
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We had seizure-like symptoms with our PANS child, but they weren't the kind associated with epilepsy (because he was aware, could look right at us, just couldn't respond). Some also have what they call "absence seizures".
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Read about it, never did it - would love to see your assessment later.
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Yes, I will second the "a common trigger for PANS / PANDAS is bacteria “unleashed” during dental cleaning or dental work." statement. In our case, our son was also lax on brushing, and the dental hygienist said he had mild gingevitis. That explains why he was slowly getting worse over a couple of months (dentist confirmed that bacteria in the mouth can enter the blood stream directly through gingivitis-diseased tissue). But then when he had the cleaning done - pow, an explosion of OCD. We solved it, albeit over weeks, with regular mouthwashing, and more regular brushing.
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Yes, one can have PANS without any indication of positive strep. PANDAS by definition includes strep, but it can be difficult to find.
Of the symptoms you mention, the leg pain seems odd. I wonder if that might be a separate issue that deserves it's own check.
I have heard of several folks that have had PANS symptoms develop after a flu shot. I take it from your notes that it was within about 2 weeks of the shot - that is still short enough (in my mind) to link the two, assuming that he never had the head twitch, handwriting and behavior symptoms in the previous year or more. But for your own sanity's sake, I would recommend against trumpeting the flu shot as the cause to doctors that you see. Write it down (as you have here), tell one doctor that you trust the most, but most doctors will tend to dismiss you more readily.
In that vein, it is better to suggest PANS rather than PANDAS, not just because you haven't linked strep, but mostly because PANS is less controversial. Even better, is to ask about ruling out encephalitis. -
I myself don't consider the Cunningham panel good bang for the buck. It doesn't treat, or (as far as I know) give a better picture for how to treat. Did Dr. K recommend it? He has already conceded the signal from tonsillectomy improvement, so I doubt he will pronounce you non-PANS. We decided not to spend that money in the case of our son.
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Yes, thank God for Grandma.
I am several hours and across the Canadian border from Chicago - wish I was closer so as to help you.Please do keep us posted, and keep your spirits up as you can.
Bob
Beginning our PANDAS journey. Advice please
in PANS / PANDAS (Lyme included)
Posted
Ibuprofen (aka advil, motrin) is for some (not all) a "resuce med" in a flare (you can't keep giving it indefinitely).
It is definitely the case that some abx work and others not, and it varies from kid to kid and (likely?) by particular sickness for a child..
Haven't had the vomiting experience, but have had our fair share of mystery stomach aches.
I have no experience with Colorado docs - am far away.