GatsMom
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Labwork back on my ds16 and a big surprise. ASO at 209 (last exacerbation ASO 769) and perfectly normal AntiDNAse at 1:170. What we've got is myco p IgM at 918 with a range topping at 770 and IgG at 462 and a normal range topping at 320. We've shifted from augmentin 1000mg xr (for 16 days) to Biaxin and a 5 day dose pack.
Has anyone had success in symptom reduction when treating specifically for mycoplasma. I would sure love to share a success story with my son whose been kicked around by this condition for half of the last 8 yrs old his life.
Thanks very much!
Gat's mom
This is more of a question really. I have tried to figure out from prior posts but did not find...If a child has been dealing with PANDAS symptoms for a long time, as in our case like 5 years, could it have been from mycoplasma all along? Are we saying that a child could get mycoplasma and it was never caught and treated so that is why they continue with symptoms off and on? And if you test now, it will show past infection?
Vickie: There were 7 days when Azith 750mg (once daily) and Augmentin 1000mg XR (twice daily) coincided. We saw a little blip of improvement a day or so into the Augmentin but it was very slight and faded quickly. The big eating disturbances happened after that. His labs showed ASO of 206 with a top range of 145 so I'm praying that the 16 days of Augmentin were enough to take care of that leaving us with mycoplasma to deal with. Dr. T knew prior to putting him on Augmentin that he had been on Azith 500mg and told us to continue on for 10 days or so at 750mg. When he started to decline after a few days, I suspected it was either yeast or him unsuccessfully adapting to both abx at the same time. Dr. T agreed to d/c Azith at that point. We've been treating for yeast with Fluconazole 100mg all along at least once per day, sometimes twice when I can get enough food in him.
As far as whether he could have had a mycoplasma through his other exacerbations, I have no idea. In elementary school he was completely undiagnosed, more tics same horrible anxiety and panic. Middle school was diagnosed but only after 6 really bad months and even then wasn't treated with high dose abx. We tested strep titers from the info I found online (NIH and such) but never thought to test for other pathogens and neither did the DAN! doc we were seeing. So, it's hard to tell looking back if he had one pathogen and multiple pathogens. All we know for sure is that 4 years ago he had high strep titers and all of the symptoms he currently has now with low strep titers and positive myco p.
It's a puzzle.
Oh, and just to muddy the waters a little more, during the first months of the middle school exacerbation prior to actual diagnosis we were, at the insistence of our beloved school district, dragging his kicking and screaming little body into that school everyday. It's completely possible that the strep is something he picked up after his decline, secondary to whatever caused this in the first place. We look back at titers and say it was strep but given this new info and timeline, I have to wonder if the strep last time wasn't simply a co-infection he picked up during high strep season while we were still dragging him into the school in his horribly compromised state. ugh.
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Labwork back on my ds16 and a big surprise. ASO at 209 (last exacerbation ASO 769) and perfectly normal AntiDNAse at 1:170. What we've got is myco p IgM at 918 with a range topping at 770 and IgG at 462 and a normal range topping at 320. We've shifted from augmentin 1000mg xr (for 16 days) to Biaxin and a 5 day dose pack.
Has anyone had success in symptom reduction when treating specifically for mycoplasma. I would sure love to share a success story with my son whose been kicked around by this condition for half of the last 8 yrs old his life.
Thanks very much!
Gat's mom
This is more of a question really. I have tried to figure out from prior posts but did not find...If a child has been dealing with PANDAS symptoms for a long time, as in our case like 5 years, could it have been from mycoplasma all along? Are we saying that a child could get mycoplasma and it was never caught and treated so that is why they continue with symptoms off and on? And if you test now, it will show past infection?
Vickie: There were 7 days when Azith 750mg (once daily) and Augmentin 1000mg XR (twice daily) coincided. We saw a little blip of improvement a day or so into the Augmentin but it was very slight and faded quickly. The big eating disturbances happened after that. His labs showed ASO of 206 with a top range of 145 so I'm praying that the 16 days of Augmentin were enough to take care of that leaving us with mycoplasma to deal with. Dr. T knew prior to putting him on Augmentin that he had been on Azith 500mg and told us to continue on for 10 days or so at 750mg. When he started to decline after a few days, I suspected it was either yeast or him unsuccessfully adapting to both abx at the same time. Dr. T agreed to d/c Azith at that point. We've been treating for yeast with Fluconazole 100mg all along at least once per day, sometimes twice when I can get enough food in him.
As far as whether he could have had a mycoplasma through his other exacerbations, I have no idea. In elementary school he was completely undiagnosed, more tics same horrible anxiety and panic. Middle school was diagnosed but only after 6 really bad months and even then wasn't treated with high dose abx. We tested strep titers from the info I found online (NIH and such) but never thought to test for other pathogens and neither did the DAN! doc we were seeing. So, it's hard to tell looking back if he had one pathogen and multiple pathogens. All we know for sure is that 4 years ago he had high strep titers and all of the symptoms he currently has now with low strep titers and positive myco p.
It's a puzzle.
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So, those who have not had success with abx like Augmentin, but go onto to have success with Zith....do you think a good number of them also had mycroplasma in addition to their strep and that is the main reason why the Augmentin did not work as oppose to so many cases of intracellular strep?
That's the first thing I thought of. Further, we tried Azith before Augmentin. 9 days of 500mg followed by 8 days of 750mg and saw no real change. It's too soon to tell with the Biaxin but I think a big gun is needed sometimes...maybe for the older kids?
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Hello everyone, we made it to Chicago, it was a adventure due to the adverse weather. We are anxious and nervous about the IVIG infusions. Mostly we are concerned about the side effects, our little girl is a major drama queen and doesn't handle illness and pain well. He told us they will give her Benadryl in the morning and Tylenol or Ibuprofen if needed. We are pumping the fluid down her and are hopeing for the best. Does anyone have any insight from their expeirence's, I guess I am just a worried Dad. I want it to go as smooth and painless as possible. Thanks, Doug
I have nothing of clinical value to add. I would only add that I think everything you and your daughter (and other family members) are feeling are legitimate and totally understandable given the circumstances. The emotional lability piece of my son's illness is exhausting...and that's just for me, I can't imagine how it feels to be so emotionally fragile from his perspective. Good luck tomorrow, you know she is in good hands.
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Labwork back on my ds16 and a big surprise. ASO at 209 (last exacerbation ASO 769) and perfectly normal AntiDNAse at 1:170. What we've got is myco p IgM at 918 with a range topping at 770 and IgG at 462 and a normal range topping at 320. We've shifted from augmentin 1000mg xr (for 16 days) to Biaxin and a 5 day dose pack.
very, very good news that it seems to be having a positive effect!
gat's mom - if i may ask -- was this your first appt with dr. T? did you do the bloodwork prior to the visit or on his order? was it only strep titers and mycoplasma or full immune workup? is that a blood test? is it only a 5 day abx and then nothing?
so am i correct that your thought now is that you were trying to go after strep as the root cause and we seeing no effect b/c that wasn't the problem, the abx you were using is effect against strep but not mycoplasma, and now are hopeful b/c you're going after the correct bacteria?
That is my thought ...that we were treating for strep (which historically we had) while waiting for labs to come in only to find a high mycoplasma which necessitated an abx change as Dr T said mycoplasma will never respond to augmenting (penicillins and cyclosporins).
My hope is (and the math of it all would support it) that we're now treating the actual bacteria he has. His ASO was a little elevated so I don't know if that will be addressed in time or not. Clearly our biggest prob right now is mycoplasma. This was our first appt with Dr. T. It was done in the form of a phone consult. We can't get my son in the car to drive to town right now, traveling to NJ from TN absolutely could not occur. The mycoplasma panel was one of 8 tests that Dr. T ordered (which included ASO, AntiDNAse, Streptozyme). I believe he was trying to rule out Lyme, Epstein Barr too. ASO was high, myco p IgG & IgM were high. Quantitative IgG & IgM were high.
Gat's on 10 days to start of Biaxin but there are refills and I think even if we had a remarkable recovery in 10 days, we'd be looking at some kind of additional therapy. He is a very sick kid. The steroid burst is scheduled for 5 days. Gat has been an advil responder all along, so I'm happy to finally be trying steroids though we're going about them a little slow.
Even beyond his work as our physician, I can't say enough about Dr. T as researcher and man truly concerned about the welfare of our kids. He doesn't have to do any of it, he could turn a blind eye to it like so many do. We've gone from no doc for the better part of 8 years who would listen or understand to one of the true experts, so despite the current state of our lives, I'm forever reminded of that blessing.
Hope that helps.
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Hi Everyone,
Thanks for your feedback. I think EMF sensitivity is an issue that we will see increasingly referenced. I have learned so much in the past week! Here is a link to some articles that appeared on the Latitudes forum. It's a bit dated, but interesting.
http://www.latitudes.org/articles/electric...y_articles.html
Of particular interest to me is that EMFs create permeability in the blood brain barrier, and this in turn allows toxins a pathway to the brain. There are many articles studies out there that discuss the ramifications of this. My daughter is particularly sensitive to toxins, chemicals, etc (in food and environment), and these can be a trigger for her tics/ocd. For the past couple of years I have thought of her as our "canary in the coal mine" -- her behavior alerts us to those things that are not good for any of us. Perhaps the same is true of her EMF sensitivity.
Her initial problems with tics/ocd were triggered by lyme disease, and so it has been PANDAS-like in that it has been controlled by antibiotics. However, after spending nearly half of her short life on antibiotics, we are now off them at this time. Otherwise, the behavior can be triggered by toxins/chemicals (in food or environment). She is a super-sweet girl, but through it all we've never really found anything that works to eliminate her quick anger/rage tendancies until this accidental discovery.
My daughter and I started our own study last night. My son saw me move his charging computer to the kitchen for the night, asked me why and rolled his eyes when I told him. I moved his charging cell phone across his bedroom (instead of on his nightstand). It was also turned off. Unfortunately I haven't figured out how to unplug his tv/game system without it having to reprogram but it, too, is at the other end of his room. Otherwise, there is no other outlet in use and the dimmer switch on his ceiling fan is completely off. Anything unnecessary was unplugged last night, most of it remains unplugged this morning. He's on a new abx that is really better aimed at his particular infection so it might be that but I'll add that he's up today hours before he would normally be and hungrier than usual (both are good things for him!). Thanks so much for posting this and bringing your success to our attention!
Gat's mom
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Labwork back on my ds16 and a big surprise. ASO at 209 (last exacerbation ASO 769) and perfectly normal AntiDNAse at 1:170. What we've got is myco p IgM at 918 with a range topping at 770 and IgG at 462 and a normal range topping at 320. We've shifted from augmentin 1000mg xr (for 16 days) to Biaxin and a 5 day dose pack.
Has anyone had success in symptom reduction when treating specifically for mycoplasma. I would sure love to share a success story with my son whose been kicked around by this condition for half of the last 8 yrs old his life.
Thanks very much!
Gat's mom
You guys are great, thank you so much.
In late fall (always late fall) I started to see some ominous small signs. There was no measurable illness preceeding it. He was already fading fast, then over new years he got a 24 hour bug and all &*^% broke loose after that and that's where we've remained. Typical disease course for him. I'd have bet my house that his strep titers were going to be very high, the presentation is exactly the same as his last exacerbations.
I have no clue what to make of this but today (after 3 doses of Biaxin and only half the prescribed amount of yesterdays steroid) he was up and wide awake at 7:30 this morning...and grumpy because he said it was too light in his room to go back to sleep. I beg to differ. I wake him out of a sound sleep around that time each day to get his first probiotics into him and he rolls right over and goes back to sleep. He's been sleeping 12 hours everyday for weeks now. Hard, deep sleeps that are difficult for him to wake from. He has a really hard time falling asleep at night and it was nearly 1a before he was out last night. Even after 6 hours of sleep, he looks more clear and focused and his color looks better than in days. I'm electing to go light on the steroids because he is so sensitive to anything stimulating right now. There are others (first cousins of mine) for whom steroid use can trigger panic attacks, a fact I didn't know until giving one the daily update about Gatlin. Further, he's hungrier so far today than he's been in two weeks.
God love the Turks or anyone else who puts time into this research! Thank you so much for the links and any other pearl of wisdom that comes to you that you can share with me (and know that I often reduce them down to a sentence or two and throw them at him as another encouraging fact)
Gat's mom
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This story is kind of weird so bare with me. Today we finally had our appointment in Ashland KY with who I previously thought was an infectious disease specialist. That is, the ENT told us he was referring us to an infectious disease specialist so that they could get into deeper test with blood work and maybe figure out if there is something that is causing the strep to hang on. However, when we arrived at our destination, it was an asthma and allergy center. We were sent to an asthma and allergy immunologist. At this point I was totally confused because the paper work that I was given to feel out was all about what symptoms of asthma and allergies he is having right now. (WHICH HE HAS NONE) I explained to them that I was told we were coming to see an infectious disease doctor about recurring strep. I was so disappointed because I had set up until 2a.m. last night preparing to give it both barrels if need be to get my son the testing he needed so that he could have the antibiotics he needs. Also, we drove 2 hours on ice roads this morning to get to that doctors appointment. Anyways, they contacted ENT and asked what he was referred for and he told them something to do with checking for nose allergies. By this time, I was ready to cry. Then I made up my mind I was going to give my PANDAS speach anyways. Suprisingly, this doctor listened to me! Then he told me to excuse him for a few minutes. After about 15 minutes he came back to the room. He had went in his office and looked up PANDAS on the internet to breif himself. (HOW cool is that?) Anyways, he says after checking it over, you do realize that PANDAS is still a controversial diagnosis right now. I said yes, I do realize. I also realize that a child cannot possibly have all the diagnosis's that mine has been given in the last 6 years and I also know that you don't grow out of Tourette's and my son had it severely for almost 3 years and 9 months ago it just stopped all together and was replaced by other things. He said I see where you are coming from but I can tell you that this is not my expertise and you may be better suited for an infectious disease specialist or a pediatric neurologist to evaluate your son. He said he would be glad to do a immune work up on him for me. I asked him, if this was your child who would you take him too. He said he would take him to anyone that would see him if it was him until he got the answers he needed. I told him that I had seen with my own eyes that Harleys symptoms improve on antibiotics and all I want is for someone to put him on Azythremicon(not sure of spelling) long term so that he has a fighting chance with this illness. AND here's the kicker. HE said, well I can do that, I do it for a lot of my patients that have chronic infections. I thought I would bust into crying right there. I said thats all I've been trying to get. So, he ends up writing us a 4 month prescription and sending Harley for blood workup. They took 10 vials of blood. We go back on March 9th to find out blood test results. And I am so Happy tonight that I can't even begin to explain how I feel. Now its time to hope and pray that this makes a difference in my sons life, which I truely believe it will. And to think, after all the doctors we have been too, today we go to a wrong one and he is the very one who gives us what we need. God works in mysterious ways. The wrong one turned out to be the only one that mattered!!!
Doesn't it feel wonderful when you take a big step forward? Great job, Mom, way to hang in there!
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Labwork back on my ds16 and a big surprise. ASO at 209 (last exacerbation ASO 769) and perfectly normal AntiDNAse at 1:170. What we've got is myco p IgM at 918 with a range topping at 770 and IgG at 462 and a normal range topping at 320. We've shifted from augmentin 1000mg xr (for 16 days) to Biaxin and a 5 day dose pack.
Has anyone had success in symptom reduction when treating specifically for mycoplasma. I would sure love to share a success story with my son whose been kicked around by this condition for half of the last 8 yrs old his life.
Thanks very much!
Gat's mom
I believe Dr T routinely screens for mycoplasma now. Thank God he did, too. My sons symptoms are EXACTLY the same as his middle school exacerbation. We never tested mycoplasma then but we do know his strep titers were very high.
Augmentin will not touch mycoplasma. Azith and Biaxin are abx choices for this. We're hoping for some sign of relief in the next couple days, anything to show we are finally on the right track. It took forever to get all of his labs assembled so we've been throwing a good deal of augmentin into him which he's tolerated pretty well but certainly wasn't helping with his appetite and refusal to eat.
We're the proof that different organisms can produce an exacerbation, in at least this kid, just like PANDAS.
Gat's mom
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Are you saying you ASO isn't elevated, and you have mycoplasma only?Labwork back on my ds16 and a big surprise. ASO at 209 (last exacerbation ASO 769) and perfectly normal AntiDNAse at 1:170. What we've got is myco p IgM at 918 with a range topping at 770 and IgG at 462 and a normal range topping at 320. We've shifted from augmentin 1000mg xr (for 16 days) to Biaxin and a 5 day dose pack.
Has anyone had success in symptom reduction when treating specifically for mycoplasma. I would sure love to share a success story with my son whose been kicked around by this condition for half of the last 8 yrs old his life.
Thanks very much!
Gat's mom
Dr. T seems to think it's mycoplasma only this time. We weren't seeing much of anything with a "Sammy" dose of Augmentin for 16 days. Labs just finally all came back and mycoplasma is a surprise and brought about the therapy change. His ASO is a little elevated, so I don't know if we should be treating that too. Myco p was more out of range than ASO.
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Labwork back on my ds16 and a big surprise. ASO at 209 (last exacerbation ASO 769) and perfectly normal AntiDNAse at 1:170. What we've got is myco p IgM at 918 with a range topping at 770 and IgG at 462 and a normal range topping at 320. We've shifted from augmentin 1000mg xr (for 16 days) to Biaxin and a 5 day dose pack.
Has anyone had success in symptom reduction when treating specifically for mycoplasma. I would sure love to share a success story with my son whose been kicked around by this condition for half of the last 8 yrs old his life.
Thanks very much!
Gat's mom
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HI Gayle,
Can you try giving him digestive enzymes to help digest the foods and vits that might
be irritating his GI system.
The gluten free diet is very helpful but start it slowly not all at once or they go into
a withdrawl and craving mode...the yeast are screaming for food.
Because he has no appetite now, maybe he was exposed to more infection, thus the
increase in pandas symptoms. Hopefully, he will get stronger and turn around soon.
I like the low thyroid possiblity, can you get a thyroid labs checked out, easy fix
with meds.
Just my 2 cents...
Carole
And I appreciate those 2 cents, Carole. He's going to have to stabilize before I can get more labwork out of him. Normally sticks are a nonissue for him but oh boy, not this time. Have an appt to go over his labs with Dr. T this afternoon. We've used Houston Enzymes in the past and it may definitely be time to revisit.
Gayle
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Day 16 of Augmentin 1000mg XR twice daily for ds16. Boycotting food, bad acid reflux and descreased appetite are common PANDAS symptoms for him. We're treating for yeast and reflux. To date I've been able to get enough food into him to dose him twice daily with the Augmentin, Advil and Fluconazole but getting food in him is getting harder, not easier. Otherwise, I seem to be seeing improvement in the emotional lability piece.
He normally has a robust appetite and I know there is significant ocd involved (he'll voice his contamination fears over almost every single food option). Today I've only been successful at getting a couple saltines into him. Could anyone share how they handle this in their house? I know the lack of fuel going in is only going to make him feel worse. I have offered to make or buy anything he wants that sounds appetizing.
Many thanks
Gat's mom
He had some sensitivity testing via applied kinesiology during his last exacerbation with no major sensitivities. The herbalist that tested him still follows his case and she's convinced the the porousity of his BBB is out of what and a gluten free diet is needed. We were doing well in that regard but have fallen off in the last week when it became more of an "eat anything, just eat something" scenario. He elects to stay away from milk when in an exacerbation as it plays to all of his contamination fears and I've long considered that it must be something that his body does not need or isn't using properly.
Vickie: I know exactly what you mean about offering food. I try my best to limit myself in my offering and not chase him down with it because it only makes things worse for him.
Last night, we had a meltdown of epic proportion from midnight til nearly 2a. This came as a complete surprise because superbowl sunday is just a great day for him. His dad came over and they had a great time watching the game. I listened from other parts of the house and he sounded just like my son again. In an effort to get him to eat and enjoy it I made one of his favs, cream of potato soup (a lot of milk, a lot of cheese). He had seconds. Then 5 hours later it all fell apart. The thought trigger was all of those *&^% ads during superbowl for aspirin therapy for heart attacks. (and the patients in the ads who were going through their lives normally when boom, they nearly died from an MI). I knew at the time that those ads were coming too fast for him to process! I understand the thought trigger, but what made him trip to that level and did last night's dinner choice have a role in it. I'm looking into the similarities between gf/cs and the ketogenic diets to try and find some middle ground.
In my own work, I recognize the value in certain diets when the body is in crisis as a means of leveling the playing field for optimal recovery. I would have no trouble believing that the thyroid is somehow involved (my mom has had a pesky thyroid for years). He had no exercise at all yesterday and I'm sure that didn't help. His dad is bringing a weight bench over for him to use, hopefully that will spur more physical activity which is usually not a problem for him.
I appreciate all the help. I'm worn out.
Gat's mom
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Tomorrow is my birthday and, instead of tackling the pile of overdue work that's waiting for me, I am sitting here reading this forum, reflecting on my years, and feeling selfish for not doing a better job of sharing my hard-won experiences of the past few decades of living with PANDAS. So I decided to sit down and write up a bit about what I consider to be the most important things I have learned about PANDAS in my decades of life with it so far. Of course, everyone is different, so your mileage may vary! This is just my personal/familial experience.
For those of you who don't know my history, I have posted nutshells of it a number of times before, and there's a bit of it in the vaccinations thread that I posted earlier today.
So here is my top-ten-or-so hard-won experience list, for what it's worth. First, I have come to consider PANDAS, at least as it manifests in my family, a disease of inflammation, and not just infection. For me/us, both inflammation and infection have needed to be controlled. I personally think it's a mistake to focus just on infection...
#1 - Fish oil with the right ratio of EPA/DHA, at least 7:1 - and at adequate doses. I know I sound like I must have stock in this stuff, but I say it over and over because it has been the single most important thing I've been prescribed for treatment, and believe me, over the years I've been prescribed a lot of things. I haven't read this book in a long time, but I believe it does a good job of describing the rationale: The Omega-3 Connection: The Groundbreaking Antidepression Diet and Brain Program (Andrew Stoll).
#2 - This may not apply to young kids so much, but at least as they get older, keep a close eye on the thyroid. My sydrome became WAY, WAY better once my thyroid was managed properly, but proper management was hard to come by at first. The trick that took a while to figure out was that my T4/T3 coupling is/was awry. Thus, in order to get my T3 to the right level for me to be clinically normal/optimal, my TSH (the usual marker in thyroid function testing) had to be titrated OUT of the normal range. I just learned recently that inflammatory cytokines interfere with T4-T3 conversion, which explains it - and which makes me think that this thyroid situation may be more general to PANDAS and related syndromes. In any case, this may not mean anything to most of you now, but if there is ever suspicion of thyroid issues (and for most psych conditions, this often is something that needs to be investigated), make sure that you get a really thorough work-up by an endocrinologist, not just a cursory check of TSH - and find someone who is not afraid to drive numbers out of the normal range if that's what it takes to make one clinically normal.
#3 - When you need antibiotics, go heavy and thorough. I don't think I need to tell this crowd that. There is enough talk about antibiotics on this board already. One thing that I've had experience with, though, that I don't think I've seen mentioned - watch out for antibiotic allergies. I've had antibiotic reactions that created symptoms (psych symptoms, joint problems, etc.) that made me think that the antibiotics just weren't working against the PANDAS - when actually, they were the problem.
#4 - Watch iron levels. Inflammation can also mess with iron levels, and low iron can contribute to feeling lousy. I've had to take iron for most of my life.
#5 - Take allergies seriously. Test for allergies and try to avoid allergens with air cleaners, elimination diet, etc. For me/us, that seems to help a lot to keep the overall inflammatory state down, and many in my family have mood/anxiety problems associated with allergens even in the absence of infection.
#6 - Watch out for hormones! Warn everyone who regularly travels within a 30-foot radius of you to watch out for your hormones, too
! Birth-control pills/treatments that have helped me: Jasmin, Norplant, anything that keeps things low and level. Those that have been a disaster: anything with phases (Triphasil?). PMS/hormonal issues very much helped by fish oil and flax. Puberty for me - a PANDAS disaster. Pregnancy - very hard in first 8 weeks, after that a breeze. Postpartum - a breeze.#7 - Beware of the manicogenic/activating effects of SSRIs. Start with VERY low doses, if you must use them. For me, Prozac was the worst of them. Wellbutrin - not an SSRI - has been much less activating for me and my PANDAS relatives - it is known to be less manicogenic per the research, also. A number of us have been able to tolerate Wellbutrin over significant periods of time and it has good efficacy.
#8 - Exercise. Can't say enough about this. Absolutely essential. Major helper in controlling inflammation and mood. Don't think I would have made it this far had it not been for regular aerobic exercise.
#9 - Rescue treatments for when things have gotten bad depresssion/anxiety-wise and I've needed "uppers" - these are what have always worked for me over the years (happily, it's been a long time since I've used most of them!): SAM-e (2-3 days only, longer becomes too manicogenic); light therapy (works fantastic at controlled doses in the morning - if too much later in the day, makes sleep difficult); ground flaxseed in decent quantities; Wellbutrin; Advil; steroids. Needless to say --> appropriate treatment of infections.
#10 - Rescue treatments for when things have gotten bad manic-wise, lability-wise, or just plain "nutty-wise" and I've needed "downers" - Depakote, Tegretol
#11 - Keep on top of those teeth! Dental messes create ugly situations.
#12 - I believe that it is true - it does get better with age. I've always thought that I just eventually grew out of most of PANDAS by 99%, but when I reflect back on it, I have to wonder if I've just, over the years, learned how to optimize the condition via proper treatment of infections, thyroid, anemia, inflammation, allergies, etc...
Have a lot more I could offer, but it's time for bed!
Perfect reading material on the morning after a very long night here. Happy birthday and thank you for offering your views, as always they are immensely helpful and motivating to this mom.
Gat's mom
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Day 16 of Augmentin 1000mg XR twice daily for ds16. Boycotting food, bad acid reflux and descreased appetite are common PANDAS symptoms for him. We're treating for yeast and reflux. To date I've been able to get enough food into him to dose him twice daily with the Augmentin, Advil and Fluconazole but getting food in him is getting harder, not easier. Otherwise, I seem to be seeing improvement in the emotional lability piece.
He normally has a robust appetite and I know there is significant ocd involved (he'll voice his contamination fears over almost every single food option). Today I've only been successful at getting a couple saltines into him. Could anyone share how they handle this in their house? I know the lack of fuel going in is only going to make him feel worse. I have offered to make or buy anything he wants that sounds appetizing.
Many thanks
Gat's mom
In the other current thread about cessation of symptoms during illness, someone mentioned the possibility of remission in symptoms having to do with the ketogenic state that most kids go into when they are sick and not eating. I looked further into that and know that ketogenic diets are often prescribed for kids with epilepsy. Seems burning stores of fat for fuel rather than carbs & protein somehow regulates the electric activity in their brains. If possible, they start those kids with a 24 hour fast to get the body used to burning those fat stores.
I could be way off base (am waiting to hear from my epilepsy expert on this) but I know my son's food refusal isn't 100% ocd. There is an element that is contamination fear and of course the biggy, fear of throwing up BUT he maintains that he has no appetite particularly in the first few hours after he's awake after his 12 hour nightly sleep. For several days now he goes about 14-16 hours without eating (10-12) of that he's alseep. Everyday by about dinner time, he starts to come around and almost always eats a decent dinner.
I'm a firm believer (through my work) that the body is constantly seeking homeostasis and possesses innate abilities to right itself. I do recognize that sometimes things get bigger than the body can regulate on its own...like strep in our kids. I understand (and fully appreciate) the need and benefit of all outside therapies but is it possible these fasts (that seem painless for him) are part of his healing? I will continue to offer food. I, too, sometimes have success with putting out a platter of options for grazing. (did this for superbowl tonight and he did great) Single serving sizes and smoothies/shakes, too. I really appreciate the great ideas from everyone and, as always, it's so good to know we're not alone in this one.
Much like the 12 hours per night of sleep he's claiming, I'm wondering if a few hours of ketogenic therapy per day is part of the way his body's trying to heal. Does this make even the slightest bit of sense to anyone else or do I just need a big glass of wine?
Thanks much!
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Day 16 of Augmentin 1000mg XR twice daily for ds16. Boycotting food, bad acid reflux and descreased appetite are common PANDAS symptoms for him. We're treating for yeast and reflux. To date I've been able to get enough food into him to dose him twice daily with the Augmentin, Advil and Fluconazole but getting food in him is getting harder, not easier. Otherwise, I seem to be seeing improvement in the emotional lability piece.
He normally has a robust appetite and I know there is significant ocd involved (he'll voice his contamination fears over almost every single food option). Today I've only been successful at getting a couple saltines into him. Could anyone share how they handle this in their house? I know the lack of fuel going in is only going to make him feel worse. I have offered to make or buy anything he wants that sounds appetizing.
Many thanks
Gat's mom
I was just reading about Manuka honey and hoping I could find some locally. That's a great idea! He does lean toward the single serve, individually wrapped things (a piece of wrapped cheese did go in him today). I'll get the applesauce tomorrow. We normally go through a lot of yogurt but I think he's getting burnt out on it because for weeks its been a staple. If somethings been in the frig for more than a couple days now, he won't eat it regardless of the expiration date. When he does eat, he doesn't like me to make a big deal out of it. I think he's working so hard just to get it down so I always downplay it and, like you said Vickie, clean up any evidence later. I have been trying to remind myself all day that we've been here before and his beautiful appetite returned once before, surely it will again. Please keep those ideas coming! Thanks so much!
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Day 16 of Augmentin 1000mg XR twice daily for ds16. Boycotting food, bad acid reflux and descreased appetite are common PANDAS symptoms for him. We're treating for yeast and reflux. To date I've been able to get enough food into him to dose him twice daily with the Augmentin, Advil and Fluconazole but getting food in him is getting harder, not easier. Otherwise, I seem to be seeing improvement in the emotional lability piece.
He normally has a robust appetite and I know there is significant ocd involved (he'll voice his contamination fears over almost every single food option). Today I've only been successful at getting a couple saltines into him. Could anyone share how they handle this in their house? I know the lack of fuel going in is only going to make him feel worse. I have offered to make or buy anything he wants that sounds appetizing.
Many thanks
Gat's mom
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I have had a bunch of vaccinations as an adult since being dx with "PANDAS." (I worked in the third world for several years and worked in hospitals for several years as well, so a lot of vaccinations have been required - and I've needed them as part of dealing with immunity issues.) My experience has been VERY BAD initial effects. For example, I thought I was going to die of depression, let alone of pain in my arm, etc., after the Pneumovax vaccine. The psych symptoms came on, if I remember correctly, after about 2-3 days and were very intense for about 3 days. I also remember having a very hard time after some of the "third world" ones (yellow fever? can't remember all of the others.) Bad enough that I still remember how I felt many years later, but the effect was temporary in each case (few days-weeks), and after a while I was back to normal.
I don't recall ever having had a problem with the tetanus vaccine. I never get the flu vaccine - have choosen to take my chances on that one.
The "presenting episode" of PANDAS for my ds6 came a couple of months after his kindergarten vaccines (he was behind, so needed a lot of them). However, he also had strep between the vaccinations and the episode, so who knows.
I have a cousin who had a boatload of vaccinations to travel to South America for an educational fellowship several years ago. She has never been the same since. Immediately after the immunizations she had horrible flu symptoms for a week. Through the years since that time she has symptoms that mirror my sons to a frightening degree. She's never been able to talk a doc into pulling titers and her symtpoms occasionally remiss like my sons but she knows the immunizations to head to S. America were the start of it. She had enjoyed fabulous health up until that point.
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Hello all,
I really need lots of help with this as there is so much conflicting information.
L-Arginine is an essential amino acid in the body, and I believe children produce it naturally for growth. It is also found in foods, dairy and wheat products being two of them. Some articles that I have read suggest it decreases when we get older.
High levels of Arginine seem to be capable of promoting the presence of certain viruses in the body., may lower Lysine, increase headaches and cause digestive upset. Lysine keeps herpes viruses dormant.
However arginine is also essential for the immune system.
Am I right in saying that arginine and lysine cross the blood brain barrier?
Does anyone have thoughts on the following.
1 Do PANDAS children get better as the Arginine levels in the body drop as they get older?
2 Is there an improvement DF?GF when arginine food levels are removed?
3 Has anyone had any amino acid tests, and what were the results?
4 Could Arginine promote the presence of Strep?
5 Can abx lower/increase arginine in the body?
6. Do our children produce to much or not enough?
The reason why I'm so interested in this is because my son suffers with persistant infections in his nose, brought on by allergies. He has his nose swabbed at the ENT clinic and it always comes back Strep/impertigo.
On top of this he suffers outbreaks of cold sores. When he has a nose infection, it really irritates him, and he constantly wriggles/rubs his nose and pulls his top lip over his front teeth.
Having one PANDAS child sent me into a panic that I now have two, but the Dr assures us it is not a tic, but him coping with the irritation, but I'm not sure. He is on allergy medication and steriod spray daily which seems to be working well.
The reason why I have brought up the subject of Arginine is that as his cold sores can be really bad our natural health dr advised that we give him Lysine rather than taking Aciclovir tablets that are pescribed.
I have noticed his nose wriggling, lip pulling stop within days every time I give him Lysine. This result has happened three times now. I do not keep him on the Lysine all the time, only when we have cold sore issues.
I have not tried my dd on Lysine as she is well on abx.
Could there be a connection here?
Thanks for your thoughts and any info.
When we started working with a DAN! 3 yrs ago, he did a trial of a prescription antiviral (similar to Valtrex) on my son. It was disastrous! Within 72 hours of starting it we experienced a huge crash. Now many would call that a healing regression and to stick it out but he was so weak from battling ocd and his inability to eat that I knew he could not tough it out. Later in his recovery, once his gut was in better health (using Rx antifungals to get what our DAN! thought was yeast overgrowth) under control, we tried Olive Leaf Extract for it's antiviral/antibiotic qualities and he did so well, shedding old ocd behaviors quickly. Many kids with an ASD test high on HHV6, which supports the DAN! stance on antivirals. We will surely revisit olive leaf extract when I can get him eating consistently again. I do think antivirals (Rx or natural) are a useful therapy but I also believe the patient should be somewhat stable and even then utilize the old battle cry from the DAN! world...go in low and slow.
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I'm glad you had that moment of seeing it and that it has made her feel better about herself! My dd felt that way too when she found out about pandas and new she was not crazy and that everything she was going through was real. Have you had her titers run to see if they are elevated? It's a place to start anyway although it didn't help us as my girls don't mount a titer response to strep.
My dd8 does not do the same cheating worry but she talks about other people cheating a lot. She talks a lot about rules that other people can break and how horrible it is and tries to ensure she does not break any of the rules. This goes for smoking, drinking, stealing, drugs, speeding.... too bad it doesn't seem to apply to talking when you aren't supposed to in class or leaving your junk around the house
She does have the homework issue, wanting to do it herself but wanting my help. I often hear "I want to do it myself, help me, no, don't help me, help me". I wonder now if it has to do with a cheating concept. I'll have to look into that.
Good luck with it all!!
Susan
My ds16 has always been like this, particularly with some of the decisions teens make at this age (smoking, drinking, sex, etc). While I'm glad his mindsets keep him away from bad decisions, I hate thinking it's because the ocd won't allow him to come to the decision based on his own intelligence. We've always wondered why he was so over the top vehement about such things. Thanks for bringing this AHA moment to the forum. It is true, the more information that I read, the more it's clear mine has never fully recovered from his last episode 3 yrs ago AND that his very high functioning sister (22) had a big episode herself at age 11. We were nowhere close to seeing it for what it was and a psychologist quickly diagnosed her ocd yet a few months later, it passed and never returned to that degree again. Thank Heaven for this forum and these doctors.
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We did have @ 30 seconds of catatonia during a rage once...very strange, we thought it was maybe a seizure.
After that have you ever seen it again? I hope not- it was very strange and scary and with him it takes a lot to make me fearful anymore! Thats a good theory though, the seizure part hhhmm.
Seizure activity was the first thing I thought of when reading your description. I am so sorry for what you are going through. He's so fortunate to have such a dedicated family.
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Somebody recently asked what the "Exorcist Syndrome" was
At the 2008 Child Neurology Society meeting in San Jose, California, I presented six children with a unique syndrome I called "exorcist syndrome"
1. Hyperacute onset - parents point to hour of change
2. Ballistic tics - forceful, unrestrained, violent - can put holes in walls, etc.
3. Disinhibition - expletives, capable of serious physical harm to self or others
4. "Falsetto" vocal change - voice is clear, no aphasia but change in quality of voice - gruff/demonic, Bugs Bunny, infantile
5. Symptoms seem to turn on and off like a switch. At times appear completely normal, then symptoms above suddenly rage.
These previously normal children acquire this illness suddenly and appear to be demonically possessed. It is not an encephalitis or encephalopathy as the sensorium remains clear, there is no significant cognitive dysfunction.
Every one of these children was fully alert, could recall the episode entirely. Video EEG normal in all.
MRI was not done in all, but where done show significant reversible basal ganglia swelling
LP was not done in all, but where done was normal.
No antibiotics or meds (such as neuroleptics) helped significantly. IVIG works - but loses effect in 2-3 weeks. Only PEX produces lasting changes
So the lowdown is don't putz around with antibiotics or drugs, go straight to the big immunosuppressive guns.
What causes it? You guessed it ....
Every one of these kids have SKY HIGH strep markers, ASO 800-1000 range, anti-DNAase B >1:2720.
In my view, this is the most severe PANDAS variant and is a neuropsychiatric quasi-emergency due to the risk of violence. It's a central catecholaminergic storm ...
We never measured Cunnigham panel on these kids, but I'll bet they show anti-neurotransmitter receptor antibodies.
If left alone, it resolves spontaneously in months-years. Resolution is often sudden.
Amazingly, outcome is excellent. Cognitive ability is preserved. This is one of the reasons why I believe the outcome in PANDAS, long-term, is good.
Has anyone's child had anything like this ???
Dr. T
We just yesterday started pricing a heavy bag for his room. Anxiety that leads to panic that goes the step beyond to a full meltdown will have some of the symptoms described above...plus screaming in frustrated anger. He's never punched a wall, directs it to a bed or a chair, hence the heavy bag purchase. He's 16, he would easily put a whole in a wall. Not all episodes of anxiety go this far, but boy when they do it's ugly and frightening. When its over he's exhausted and embarrassed but typically much calmer and it's like a burden has been lifted off his shoulders.
Gat's mom
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We are working with a classical homeopath. I am not familiar with the Pleo Sans drops but they seem to be a nosode or isopathic type of remedy. A classical homeopath uses a single remedy at a time, and bases their remedy selection on the individual mental, physical and emotional characteristics of the patient - so 10 children with PANDAS might be prescribed a variety of different remedies (and nosodes) depending on their individual symptoms. A great book that explains classical homepathy is "Impossible Cure" by Amy Lansky. Her son was cured of autism with homeopathy and it does tell that story but goes on to give a really good explanation of how classical homeopathy works and how to choose a homeopath. It's a really interesting read too.
Here is a link to an article on a 16 year old with OCD treated with classical homeopathy. Although this boy's remedy was syhpilinum, not everyone having OCD would need that remedy and it is a very powerful nosode so would not be recommended that anyone try that on their own.
http://findarticles.com/p/articles/mi_m0IS..._84211150/pg_5/
I found our homeopath from this website. These ladies are all students of Dr. Luc DeSchepper, a homeopath (now retired) who has written many books. He has someone who took over his practice who is also probably very good (Farah Gron). It is better to meet with someone in person but some practitioners will work over the phone or skype.
http://www.homeopathyforwomen.org/
There are different ways of dosing homeopathically and our homeopath uses the remedies in water rather than with dry dosing. I like this method as it is possible to adjust the dose very precisely for kids who are very sensitive as my daughter is and you have a lot more contact and give and take with the homeopath with this method.
My daughter was fairly healthy though had tons of ear infections/strep several times when she was younger. She was quirky - extremely gifted, had difficulty with transitions, socially inept, adopted). When she hit puberty she developed sensory processing problems, rage, withdrew socially, developed OCD, eventually became unable to do school. During that time she did stop having colds, flu etc. It was suggested that she had aspergers but I don't really think she does. When we were on that track we tried DAN and Amy Yasko (buckets of supplements!) and I think in the end the heavy supplementation made her OCD worse. Her body is really sensitive and I don't think she was able to tolerate it - same with medication. Even with homeopathy, we have to give her 1/4 tsp. of a remedy while the rest of us take a 1 tsp. usually.
The homeopath sees any kind of discharge - cold, vomiting, diarrhea, even emotional outbursts as positive. The homeopathic view is that the body tries to move disease outward - away from the essential organs of body to protect the organism. So a skin eruption would not be as serious as asthma and the mental level would be considered the most serious impairment of a person. The example would be that a person can function pretty well having lost a finger or even a hand, but if they are impaired on the mental level, they lose much more ability to function.
OK - I will stop now. I have become so fascinated with all this that I have recently enrolled in a school for homeopathy. So I could go on and on...
Sandy
Sandy,
So interesting! I once worked in association with an acupuncturist from Thailand. One of the things I can remember about her despite a huge language barrier was that rashes and any eruptions (I'd assume emotional, too) were the body's way of purging. I'm a massage therapist with a clinical practice and emotional purges with my clients, though uncomfortable for them in the moment, are nearly always a bridge to healthier ground. My cousin is a research psychologist and she, too, agrees that emotional releases (specifically the crying I do wrt to my son's relapse and the current state of our life) is highly therapeutic. Further, on a bad day, my son's most lucid, relieved moments are after a meltdown. All seem to point in the same direction. Where do you live? My son is 16 also and completely unable to do school for the past 3 wks. Thank you for your very interesting post!
Gayle
Gat's mom
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I have some questions for those of you that have gone the antibiotic route.
A little history on my son. He's 10 and weighs 78 lbs. I noticed his OCD symptoms during the summer of 2007. They were much worse by December and he was diagnosed formally in February 2008. We've done several rounds of therapy, usually during the school year because his symptoms seem to let up considerably by Summer (less exposure to strep I'm thinking). From 2006 to 2008 he had strep many times. In late November 2008 we finally had his tonsils taken out. Prior to the operation we realized he had a sinus infection and strep again so he went on antibiotics pre-op. I can't remember what they were (not amox). Then a 2 week course post-op of amoxicillan. We then had the best Christmas season we've had since he was 5. We never dreamed it was the antibiotics. In February his symptoms were back full force and we put him on Zoloft. Usually by March his symptoms are better again (end of strep season?) but we thought it might be the Zoloft. By summer he was much better again. When school started his symptoms came roaring back and added a whole slew of tics. His placement tests were awful. Usually he places in the high language arts and high math groups and his teachers are amazed at how bright he is. This year he was placed in low math and middle language arts. His handwriting was so horrid on his tests that the principal showed me to prove he was where he belonged and I had to admit that it was really awful. Looking back I now realize that his brother and several of his friends were diagnosed with strep that same week. Instead I had him tested for a learning disorder. The testing happened about a month later and the occupational therapist said his handwriting was OK. By then it was better. I assumed it was getting back into practice after summer. Because his tics had gotten worse I purchased the Bontech supplements. In October I had a throat culture done and it came back negative. His doctor wanted to bump his Zoloft up to 150 mg. I was questioning whether it was even doing anything at that point. Within 2 days my son was totally manic and could hardly sit still. I knew it was the medication and we began to wean him off entirely. He finished his last pill last week and we have noticed zero difference except he gained 15 pounds in a year. We started a new therapist in December 2009 who suggest Inositol and SamE. He has been taking 18g of Inositol since then and his disturbing thoughts have completely vanished (afraid he might kill the cat he loves so much, afraid he might kill his little brother and spend the rest of his life in prison, afraid that he wants to rape me...fun stuff). So at this point he is taking a whole regimen of supplements and I'm a little over zealous about high fructose corn syrup, caffeine, MSG and Red #40. He has been taking 15 Bontech caps, oregano oil, 200 mg SamE, zinc, chroumium picolinate, inositol, 1000 mg fish oil, flax oil, vitamin C, vitamin D and 3 mg of melatonin. I had entertained the PANDAS possibility since it all began, but until reading Saving Sammy I didn't really understand how it worked and I didn't think they treated it any differently than regular OCD and TS so I didn't pursue it. After reading the book I went back and looked through journals and medical records and wrote it all out and realized that it probably is. His doctor doesn't know enough to make a formal diagnosis, so we are treating it "as if" to see what happens. I'm confident that the antibiotics will help.
I must admit that his symptoms have never been incapacitating. He is definitely on the milder end of the spectrum compared to so many other kids I've heard and read about. He is functioning and he is happy. As long as he doesn't have the dark thoughts, at this point he doesn't really mind the other stuff too much. His friends and school mates have been very accepting but with Jr. High looming, I worry it won't stay that way. Also, he is starting to go through puberty and I'm worried that the hormonal changes with make things worse. And his neck tics do make him sore after a few bad days. I worry about long term damage.
OK so here are my questions:
He is taking a 10 day course of Augmentin. The doctor prescribed 875 mg twice a day. So 1600mg roughly a day. That seems about right to me after reading Saving Sammy. His doctor couldn't seem to find an XR version at that dose. I asked for the XR version mainly because I thought I read somewhere that it seems to be easier on the stomach. Is that true?
Those who have done antibiotics, have you kept up with the usual supplements as well? Many of the supplements already can cause stomach upset or loose stools so I'm wary to add them to Augmentin.
Did your child have stomach problems? When my son was a toddler he had TONS of ear infections and ended up with a nasty yeast infection from one of the antibiotics. I've added a Culturelle between doses. Is that enough? Should he be eating yogurt or drinking kefir as well?
Is 10 days long enough to see a difference? I've read that it can take months, especially the longer the child has had it. He's had it at least 4 years, maybe longer. His doctor was concerned about the idea of prophylactic antibiotic use, which is understandable. He did mention that the NIMH doesn't recommend them, but didn't rule them out. I watched a presentation by Dr. Swedo last night where she mentioned that they were very effective. If I don't see a big difference in 10 days, I'm worried his doctor won't agree to keep going. Any advice?
If the antibiotics are effective, have you stayed with the supplements and/or restricted diet? Obviously some of the supplements I would keep, like fish oil and Vitamin D regardless. I'm just wondering when to stop the inositol at such high doses. And while I know artificial food stuffs aren't good for anyone, it would be nice not to worry about birthday parties and holidays so much. His tics are soooo much worse if he's had red dye.
I guess I'm still trying to piece it all together because his doctor fully admits that I know more about it than he does at this point so he is relying on me to bring both scientific evidence as well as anecdotal information to him in two weeks. I'm keeping a detailed journal as well. We should have his tests back today and then I guess I'll have a better picture of what is going. on.
Any information you all can provide would be greatly appreciated!
We've continued to keep in place the supps that our DAN! started us on back when he was 11 (he's 16 now). Our dairy is organic. Moderated amounts of gluten. D3, cod liver oil, vit c, probiotics (therabiotic detox support by klaire labs), kefir, yogurt, melatonin and fluconazole for yeast. he's taking a lot right now in conjunction with augmenting 1000mg xr twice daily (day 14) and advil. He's currently unable to do school. at the point that we see improvement enough to return to school I'll add back pygnogenol, L-tyrosine & P5P for attention and focus. his stomach can't tolerate any more than what's we're currently doing. The last 3 for attention and focus really helped last time once we got anxiety and intrusive thoughts under control.
! Birth-control pills/treatments that have helped me: Jasmin, Norplant, anything that keeps things low and level. Those that have been a disaster: anything with phases (Triphasil?). PMS/hormonal issues very much helped by fish oil and flax. Puberty for me - a PANDAS disaster. Pregnancy - very hard in first 8 weeks, after that a breeze. Postpartum - a breeze.
Amazing Result! Unplugged Cordless / Wireless Lyme & tics
in PANS / PANDAS (Lyme included)
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I think they all know something subconsciously but often the ocd clouds it with so much other static. My son is the the most intuitive person that I know.