Hierge
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Posts posted by Hierge
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I only give my 12yr old child Omapure IFOS certified pharmaceutical grade fish oil which sells for about 20 bucks for a bottle of 120 capsules. Until I got her on prophylactic antibiotics she was on a 7 gram EPA/DHA brain shake per day. Unless the fish oil you buy is IFOS certified you cannot know if it is pure from mercury and contains at least 60% EPA/DHA. I purchase Omapure in boxes of ten bottles for $20 per 120 capsules.
Most fish oil you buy including Dr. Sears (not Dr. Barry Sears from the OmegaRX) contains the sewer of the sea. Hate to say it, but it's true. Mercury and PCB's are not good for kids. Feds don't regulate it.
I personally take 7.5 grams of EPA/DHA molecularly distilled Omapure per day and have done so for two years. It is very good for PANDAS kids. Pick up a copy of Dr. BARRY Sears book OmegaRX and you will understand the science behind dosage etc. You can get used copies on Amazon for three dollars.
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I'm not a doctor, but Predisoine is supposed to temporarily knock out PANDAS in all kids. So, you basically know if it's an autoimmune deal. Cant continue it due to side effects. My 12 year old responded well and was pronounced "cured" by Dr. L after both two months later.
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Funny topic! I took my younger son to an Infectious Disease doctor last month for sinus issues that have lasted for over 4 months. Told her about the whole PANDA story with my older son and my fear of him getting it too. She insisted that I get both of my son's the flu shots. When I told her no, it was like I was the worst Mom in the world! Why wouldn't you get a flu shot she said. You're doing way more harm by not getting them, I can do it today. I told her no again, I'm not doing it this year. Told her I knew that I was taking a big chance and if they got the flu I would hate myself, but my MOMMY FEELINGS were telling me not to do it this year! Should have seen her face people! Like she couldn't believe I had an opinion...
Again, knocking on wood that we miss it this year, and the next and the next.
For sinus issues, you might benefit from Neti pot and oil of oregano. People swear by these methods.
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Holy guacamole!! I suspected that this might be a bugaboo, but perhaps we may have a causative factor here? Maybe these friggin shots are causing many more cases of PANDAS than we know. What if they were the primary factor?
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I was reading a post where a vaccine caused PANDAS to come back in a "cured" child. I am now concerned about Flu shots. What's the general feeling about giving PANDAS diagnosed kids flu shots? I am inclined to not risk them due to low effacacy and other obvious reasons.
(Update) If you are a parent of a child with PANDAS with non-custodial parental rights... take notice. Apparently, after writing this post, I found out that Blake's mom took "cured" daughter as of 12/01/10 to get her flu shot on 12/18. Symptoms are now back. I specifically asked Dr. L about this and seem to remember she said no to flu shots. Mom says she has an email from Dr. L which says it's OK to have flu shot. I'm so upset right now. She gained 20 lbs and seemed to be doing so well. I spent four years and fights with her mother to get this dealt with.
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The National Institute of Mental Health in Maryland issued a statement declaring PANDAS real. Disease caused mental disorders are now on the table again after a century of Freudian dominated thinking. PANDAS will be renamed soon and the doctors from Johns Hopkins who are "turncoats" to the new paradigm get to name it. This is described as a Vatican type of announcement.
The reason it is has been so hard to declare real is because it's largely circumstancial to date. People have known for a century or more that strep throats are associated with OCD, tics, heart problems, rheumatism and other autoimmune disorders. There was just no direct proof.
Dr. Swedo has come the closest in my opinion by measuring the volume of certain brain structures pre and post strep infection. Other people know a lot more than I do, but there are also other immune system indicators. The science behind this just hasn't caught up to the circumstantial proof. It's not entirely uncommon for drug companies to not know how drugs work, so it follows that we don't have to know how it works to use it. Aspirin finally was figured out after many decades of use.
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I had to knock this out for myself and I did it without pills. I got a Neti Pot for fifteen bucks and irrigated my sinuses each night for a week. I also started using Oil of Oregano concentrate diluted for sublingual and breathing in application. I didn't do the breathing the vapor procedure, but it will kill any infection in the sinus. Sublingual should also kill any strep in the throat. Oil of Oregano tastes really bad though. It's more concentrated than the oregano you are used to on Pizza. You can find several different guides through google on getting rid of sinus infections. They work well in my experience.
Up to a third of blocked sinuses are due to infection not allergies. Noses carry nasty stuff. I also used Bacitracin on a cue tip up the nostrils before bed each night which killed the strep up there too. You will find the bacitracin remedy online as well. Neti + Oil of Oregano + Bacitracin will kill any sinus infection and keep it away.
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This all sounds reasonable. Drug companies have to have the economics behind their marketing budgets. PANDAS is a rare disorder, but the kids are going to be long-term users right? Those are the meds they put the money behind right? Chlosterol is long term, cialis is long term, allergy meds are long term. This one fits too, but can we prod them to review the spread sheets and have their marketing dept. take a look at the potential market factors that might drive a potential campaign? Perhaps there are other "economies of scale" where other disorders could be grouped in with OCD. If it's an avenue of progression, it seems to be worth the effort to find out.
One problem with XR in particular is:
Giving Augmentin XR Oral to a child under 12:
Warning: SAFETY & EFFICACY NOT ESTABLISHED FOR PTS LESS THAN 16 YEARS.
Of course this doesn't mean it really isn't safe for children. Augmentin XR is just extended release Amoxicillin with Clavulonic acid (at a lower dose than is in regular Augmentin). But, because the drug company hasn't spent the $$$ to to do enough studies for the FDA to say "it's safe for children" they can't really market it as something to treat children with PANDAS (or OCD).
This stuff is all about $$$ for the drug companies. If they don't think they are going to make enough money to make marketing (including paying for the studies needed to support their claim)worthwhile they won't do it.
Right now, most docs think of PANDAS as extremely rare...so it is unlikely the makers of XR will think it will be profitable to go down the PANDAS route.
Are any of Beth M.'s docs (in Boston) doing an XR study on PANDAS kids? I vaguely remember something to that effect?
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There are always going to be concerns about what's the right treatment. This autoimmune disorder is triggered by Strep. Strep is treated with Augmentin XR. Not every person responds to Augmentin XR for strep throats. So should we stop treating strep throats with Augmentin XR because not all kids are fixed with it? I think it's ok to get this treatment out there to adress Strep without too many problems. If it doesn't work, then by all means get better treatments. Until then, let's try and help the 90 percent untreated PANDAS children on drugs like Augmentin XR to see if that helps like it did with my daughter. It's a safe drug and has been tested for decades.
I have always believed that until the drug companies get on board not ALL the docs are going to know/treat this--sadly, that is the nature of our medical establishment. (Of course, there are always excellent doctors who are exceptions to this).
However, I am concerned about PANDAS getting boxed into a specific treatment protocol when it seems that the research really isn't there yet. Too many docs are telling parents they can't or won't treat this, and I think it can be harmful for the medical establishment to get stuck on the idea of Augmentin XR being the treatment.
I think it is more helpful for doctors to understand that they need to dig for infectious causes, address the infection, and treat the autoimmunity accordingly. I'm just worried for that child who needs more than augmentin (such as prednisone, IVIG, and Plasmapheresis)...I worry that if a child doesn't improve in x number of days (as marketed) then doctors will dismiss it as being PANDAS.
I am hopeful, that things are beginning to fall into place!
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Over the last two months and two appts with Dr. L in Bethesda she emphatically said that the "Vatican" has spoken at NIMH and Strep is officially linked to OCD, with emphasis on PANDAS. The disorder PANDAS is due to be renamed in accordance with two Johns Hopkins doctors (former opponents.) These massively influential doctors under the crushing weight of evidence have changed their positions 180 degrees allowing the dam to break for the paradigm shift to infectious agent originated mental disorders.
Augmentin XR is one of the primary treatments for PANDAS right now and after watching commercials every single evening for allergy drugs, birth control drugs, chloresterol drugs and the (ahem) Cialis class drugs, it is clear that drug companies are marketing the heck out of drugs.
Augmentin XR is well tested, profitable, and is very popular. It would seem logical that Glaxo might want to put some cash into marketing this trusty old drug for the new OCD fix. Does it make sense to contact them in some capacity through their board or other vector to shake the bushes on this? I'd personally like to see their drug reps pushing Augmentin XR in pediatrician offices this spring for strep related OCD as a long-term solution. That'd get a lot of parents on this group covered for their kids through their pediatricians without having to get a PANDAS doctor.
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It IS so hard on THEM! And I forget that sometimes because I am so confused and angry and tired of being yelled at, and tired of not knowing/understanding the rules of her OCD. But one day she told me how, if she has a saxophone lesson, which happens after lunch in school, she has to remember to buy lunch because that is faster, and line up early to go to the bathroom to wash her hands, which takes 10 minutes because of OCD, then hurry straight to her lesson without going to her classroom first, because by then she is always late, etc. etc. It's so much for a 9 year old to have to worry about, and that is just one small part of her day. She hates to talk about being sick, or hear about it, or think about it. And there are others so much more ill than she is. My prayers go out to all of these helpless, innocent kids. They are so undeserving of their plight.
Laure, I let my little girl suffer for four years with PANDAS. When I finally got her the treatment she needed on October 28, I cried and apologized to her for not fighting harder to get to the right doctor. My girl has PANDAS, and if your daughter has PANDAS she can get a lot better with the right treatment.
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Dd9 wrote a long letter to Santa with 10 gift requests, with a note on the bottom "Turn to back." On the back of the letter she wrote this:
"I suspect you know I've been sick with strep cause you see me when I'm sleeping, you know when I'm awake. And I was hoping you could fit a little hope down my chimney. Please?
Love,
Your most famous admirer, Sophie"
Guess all of us are praying in our own ways!
Blessings to all of you PANDAS moms and dads out there, wishing for a little holiday hope.
It's sad Sophie is sick with strep. She's not on antibiotics then full-time to keep the strep away then? I hope she gets her wish. I will pray for her.
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Fixit, thanks for the well wishes. Blake had some weird facial tics before treatment. I am a man and somehow men are less observant than women at facial tics. Dr. L told me she is one of the top experts on reading facial tics. What that means overall I don't know, but in our case she said that she watched my daughter for an hour and a half and diagnosed PANDAS with 100 percent certainty with that being a major factor. Sudden onset to the day, sore throat right before, titers out of whack, handrwriting going completely screwball... She said it wasn't even a close case. She also judges facial expressions and reactions in parents. She says she is getting good enough to make the diagnosis almost immediately just from reading the agony of the mother.
Blake is essentially "cured" according to Dr. L. Tics are at zero. Finger movements at zero. Smile on the newly filled out little face. Good mood. It's almost a miracle.
Dr. L also reiterated that the cat is out of the bag on Strep and OCD. She said that doctors all over the world should be diagnosing PANDAS soon and administering steroid bursts, Augmentin XR, and IVIG where warranted. Methinks someone should get in touch with Augmentin XR drug company and have them do a major marketing push for this drug as a treatment for OCD.
Sooooo Happy for your dd and your family!!!
Thank you for posting how she summed up your visit on your dd particularly and the little tid bit above..
i just bawled my eyes out for 15 minutes....happiness and anger out of the 7 years i've been fighting this off and on....
Not to be semantical...do you think that statement was meant to include tics...you may not know...just asking as mom of a ticcer
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Vickie, any suggestions on a probiotic?
I am so happy to hear things are still going well! Wouldn't it be lovely when we don't have to walk into a doctor's office ready for a fight or defend ourselves?
Personally, I would give a probiotic. Not only will it help with yeast overgrowth but it also helps with the immune system.
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Hi all,
Want to say a quick thanks to everyone here. The info on these forums and all of your replies have been a tremendous help in getting us started on this investigation into dd's possible PANDAS/PITAND.
We saw the ped yesterday, who walked into the exam room with a stack of PANDAS info she'd found in her research. I really love this peds practice, and especially our doc:). They are all awesome docs in their own right, but they don't hesitate to refer out or consult with experts/specialists whenever something falls outside of their own area of expertise/clinical experience. Our ped had consulted with the ped rheumatologist, and together they had lab orders waiting for all of the tests I'd been planning to ask for-- and a few others. The ped rheumatologist in our practice highly recommended Dr L. and told our ped we should go straight to her.
So, dd is having the labs drawn this am. We've begun ordering all of her medical records, etc.. And we have an appointment scheduled with Dr L on Feb 10th, which was her first available. They put us on the waiting list, too. We're within a few hours and we homeschool so if something did come up sooner it wouldn't be hard for us to jump on it.
Oh-- I found our medflex recpt's for the year dd was dx'd with OCD. She was on sulfatrim 2 weeks prior to the panic/asthma attack at school, and was on and off a lot of antibiotics in the months prior to and following the time the symptoms really exploded to the point she was unable to cope (though I suspect this was not the first of it-- we'd had on/off issues w/ separation anxiety, regressive bedtime stuff, behavioral issues, etc. for quite some time). Will see what, if anything, her med records reveal when we get them all in.
Anyway, thanks again for all of your help so far!
TH
Good luck. Dr. L is the absolute best. Staff is first rate too. My 12 year old suffered for four years until Dr. L. Anorexic, crying, fears, facial tics, and new stuff all the time. Since September 28th she went on steroids for a month and prophylactic Antibiotic 1000 mg Augmentin XR. She went from an anorexic 59 lbs to 81 lbs two days ago in Dr L.'s office. Dr. L pronounced her fine and dandy. For all practical purposes cured. Hope you get the same result.
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My ex-wife has chronic strep throats. She had three of them while pregnant with my PANDAS daughter. Ex-wife has heart murmur, grandmother has heart murmur, my PANDAS daughter has heart murmur, my Rheumatic Fever brother has a heart murmur from birth. So, this is a syndrome that develops from birth.
Here's the real kicker: Mom had the three strep throats during pregnancy and a bad one in the delivery room. After PANDAS daughter is born, mom develops nasty rheumatism in her knees and elbow joints. This lasted three months. We were afraid she had Lupus, but she turned up clean on that. It was strep.
At eight years old, daughter gets a sore throat. Then Kazaam, she starts acting like a feral child crawling around on tables, scribbling like a cavegirl with crayons, moving in a very strange manner, unable to sit up on a chair, staring at the sun with eyes open... it scared the crap out of us. On the third emergency room visit she got the PANDAS diagnosis. Took four years to get proper treatment.
This is from birth. Talked to my Dr. who is a PANDAS expert. She agrees this problem is family based and it is likely the strep infections during pregnancy were a factor.
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My 12 year old daughter has stopped this behavior which went on for four years. She would cry at the drop of a hat and would report to us that she just couldn't stop, it was clearly compulsive. She was anorexic during this period of four years and we had trouble getting her to eat.
We came to the conclusion that low blood sugar was the primary factor in these episodes. Take her to Pizza Hut and she'd be all smiles AFTER she finished eating. See if snacks and meals help. PANDAS kids need to eat, so you get two birds with one stone.
Also, my daughter stopped this behavior completely after a month on steroids and 1000 mg of Augmenin XR which she will be on for a long time. Dr. told me that long-term antibiotics somehow do not have the adverse effects on PANDAS children they have on other people. No explanation for this, just having experience with a LOT of PANDAS kids taught the doctor this.
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Dave - I think I was sitting at your table that night as well - right next to you and your wife if I remember correctly. I was picking everyone's brains about doctors as well and we had an appt with Dr. L that following week for my son. If I'm correct...I remember your story very well and am so happy to hear how well your daughter is doing now! Good for you for pushing the issue and getting her the help she needed!
Rachel
Rachel from Texas I believe? Thanks for your recommendation too for Dr. L !
My wife Sarah and I have mostly been afraid about the Anorexia which is a near miracle recovery. I think it's about time for everyone who has sick kids to get the kind of treatment they need from their local doctors. It's a scandal you have to travel so far for treatment when it's so easy to administer. We aren't talking about millions of kids here, just thousands. Dr.s are brainwashed into not prescribing prophylactic antibiotics these days. It's a travesty that will be changing soon.
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Just got back from Dr. L's office in Bethesda earlier this afternoon. Had some time to chit chat with the office staff who are just about experts on PANDAS in their own right. FYI - Dr. L is booked up it seems into next year and it may not be as easy to get in as a new patient at this time. I wouldn't give up though, her staff and she are very sympathetic people.
We had a fairly brief visit with Dr. L amounting to roughly twenty minutes. We talked about how Blake has gained weight and that her tics are completely gone. Fears are mostly gone too. Anorexia was a big concern for me and I was very sad that she only weighed 59 lbs on her first visit - a basic bag of bones with knobby knees. Dr. L weighed her in and I almost fell over when she reported that Blake now weighs 81 lbs.
22 lbs gain in TWO MONTHS. She is at the 50th percentile for 12 year olds now and 25th percentile for height. In other words... normal.
No reason to do blood work... no reason to do further testing... no reason to take tonsils out... no reason to have IVIG... in other words...
SHE IS OK NOW !
She will stay on 1000 Augmentin XR cut in half morning and night. Dr. L reiterated to us that PANDAS children are strangely immune to the side effects of prophylactic antibiotics in terms of yeast infections etc. She said if I want to give her a probiotic I could, but she doesn't know much about them.
Dr. L also reiterated that the cat is out of the bag on Strep and OCD. She said that doctors all over the world should be diagnosing PANDAS soon and administering steroid bursts, Augmentin XR, and IVIG where warranted. Methinks someone should get in touch with Augmentin XR drug company and have them do a major marketing push for this drug as a treatment for OCD.
Thanks again to Stephen the angel who directed me to Dr. L at the OCD conference dinner with Beth Maloney. My little girl is better now because of you. I'd also like to put a shout out to the man upstairs. My prayers get answered way more often than I deserve.
Dave H.
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I am so happy for your daughter and you!
Thank you!
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So glad to hear that, Dave! I've been wondering about you & Blake.
Thanks Emerson! You just reminded me to say a prayer for you. Hope you are doing ok.
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YYYYEEEEYYYYY!!! Praise God.
I have been thinking about your daughter this week Dave--
(my husband sat next to you at the pizza dinner in D.C. this summer
So, so happy for you all--
Hey, thanks so much. You and your husband are the ones that got me on the right track. I will be happy to buy you dinner some day.
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I haven't seen Blake for six weeks since the day we had our first appt. in Dr. L's office in Bethesda.
She had soccer season and games on all my weekends so I gave in and let her play. Anyway, I picked her up off of the bus and first off I noticed that her face has completely filled out now. She was diagnosed at 69 lbs with anorexia. That's not an issue anymore, clearly. I should attach photos it's that dramatic, but it's too late his evening to get a good photo.
I watched her over dinner tonight as she played on her Ipod. Zero ticks and fidgeting with her fingers. And I mean Z E R O tics. She's more or less back to "normal" or what I think she must be like when she's not under the influence of PANDAS. This is the first time I can remember her like this in several years.
It's weird because it's been so many weeks. She finished the steroid burst two weeks ago and is on 500mg Augmentin. One huge tablet broken in half twice a day.
I had a three hour drive with her home in the car. The entire time she laughed with her sister and there was none of the pushing and fighting I witnessed the last time. She used to fight for space in the back seat. I did notice some "eye rolling" when she described how all fourth graders (her sis) went on the field trip to Jamestown... so passe these days! I guess. I called her on this and she was nice about it.
None of the darkness or fears I have gotten so used to. Tonight I tried to get her to order eyeglasses by the size on her frames and she expressed anxiety about her bully mom not letting any unapproved glasses on her. I thought about PANDAS and concluded that her mom is just a control freak. She has been abusing Blake mentally to control PANDAS until this point. Blake is still afraid of her controlling behavior.... sigh.
I had her in my lap looking at glasses on the laptop and she actually got too warm so I asked her to move to the couch. She was a bag of bones last time I saw her so I am amazed there too. She's actually a pretty little girl now, not an anorexia poster child. I bet she's gained ten pounds in the last six weeks.
Praise the man upstairs!
I asked Blake to write about her experience. She agreed to do so in long hand this weekend. So perhaps I can get this in her words. I just asked her and am reporting live: She is no longer deathly afraid of the dark, watches movies with no difficulty going to sleep if they were scary, no "episodes" where she would cry and her mom forcing her to not cry, much happier, happy to be off of concerta which caused depression, no tics or hand movements.
This pretty much covers all her PANDAS related behaviors. So, Prednisone and Augmentin have been working.
More later.
Dave H.
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Thank God for this post...
I have the same issue with my daughter.
PANDAS or not?...Help please....
in PANS / PANDAS (Lyme included)
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This happened to my daughter at 8 years old. We got her to the hospital pretty quickly when similar symptoms appeared. She was admitted and given intervenous antibiotics. I believe to this day that the early administration of antibiotics on the first episode of PANDAS saved us from her being an Exorcist child. Get the little guy to the doc and kill this infection immediately. It will be a lot easier later on when it hits again. You may need to see an PANDAS doctor and get him on prophylactic antibiotics. It will save you a world of grief in the long run.