LNN

Thanks for the link. More recent PubMed stuff seems to indicate the controversy still exists but apparently some legit studies indicate the office visits may help. Like I said, we will have to see noticeable improvement to do it for very long. I did find something called EyeWiki that said this Convergence insufficiency is also associated with several neurological disorders. Neuro-degenerative diseases affecting the basal ganglia, such as Parkinsons Disease, Progressive supranuclear palsy (PSP) and Huntington’s Chorea have a higher incidence of convergence insufficiency3,17,18. http://eyewiki.aao.org/Convergence_Insufficiency Now, I take Wiki with some skepticism - after all, read its Pandas page. But I thought it was an interesting connection to the basal ganglia. I do know DS's reading gets better when he's healthy. Ok - health-ier than he is right now. I also found a page from Boston Children's Hospital that embraced vision therapy for certain aspects of CI (as you said, there are apparently 3 types of issues with CI). But given the recent events, I wasn't about to tout BCHs opinions

Does Ds still wear the glasses? Does the need for them go away as the eyes correct themselves? Or is this a long haul situation? I've read that the therapy is controversial but can you explain why? And who's on each side of the debate (when I dug into the lyme "controversy" it became clear that I agreed with one side overwhelmingly more than the other, so not really controversial for me). Wondering if this is "it's just unproven" or if one group of professionals has an ideological difference with another group on a grander scale. Obviously the cost means we'd better see some bang for our buck or it won't be a long term thing.

I found mine from a referral from this site http://www.optometrists.org/findeyedoctordirectory/ You can also search for behavioral optometrist Mine is about 30 min away. But the docs seem to know each other. So if you find one who's a bit of a hike, you might ask if they know someone closer to you. It could be that not every doc belongs to the above organization. Turns out there's also a second doc I could see who's about 30 min in the opposite direction who did not show up on the referral list. Also, fyi - not all eye glass places can fill the prescription. My doc sent me to an optometrist down the street from her because the lens crafters in our areas can't make the particular type of lens that's required. It's not cheap - $200 for initial exam, $475 for comprehensive exam+written evaluation+parent meeting (to get DH on board), then $125/wk for vision therapy. These are all considered medical and I need to submit to our medical insurance carrier for 60% reimbursement. The glasses will be $380 (depends on your frame choice of course) that will hopefully be covered by our eye care insurance. Did I mention I have 2 kids that probably have this??

Ok, Queen of the Onion Peelers here, passing along yet another thing you can worry about and spend money on... My kids have struggle with several facets of illness - methylation, pyroluria, lyme, Pandas - nothing black and white about our bears. Last month, a friend who's walked down some of these same paths with me, told me her son had just been diagnosed with Convergence Disorder - a kind of eye tracking problem that interferes with his ability to focus and read. She shared this blog with me: http://thethinkingmother.blogspot.com/2008/04/ive-been-learning-about-convergence.html My daughter was diagnosed with "lazy eye" by her pediatrician 3 yrs ago (using some device that attached electrodes to her head). We were referred to a pediatric eye doctor who prescribed eye glasses for an astigmatism. Come to find out he never tested her for lazy eye. Only whether each eye could see 20/20. She has always insisted her glasses don't help. Now I think I know why. Because they aren't helping her binocular vision. I took my son for an evaluation today (surprise - the three docs in my area who treat convergence insufficiency don't accept insurance - you submit your own claim and I get reimbursed 60% for using an out of network doc). She detected several issues with how his eyes are working with his brain (or not working). It impacts his reading, his comprehension and his coordination. It can also manifest as ADD/ADHD. He'll be getting special prism glasses next week. The lens is a bi-focal, with the top having no prescription (because he has 20/20 vision) and the bottom will be a prism lens that makes light and objects converge in a way that will help his binocular vision. He is NOT happy because he is very worried about being teased. But I'm hoping they help enough to make it worth while. He will also need something called vision therapy - weekly visits for some sort of computerized occupational therapy that re-teaches the eyes and brain to work together on a neurological level (as opposed to some sort of muscle strengthening exercises). My first worry was that this was some sort of unproven theory but it's apparently legit. My daughter goes for her initial evaluation next week (I'll be getting the family discount - woohoo (where's the sarcasm button?). The up side is that the doctor provides a write-up for the school, which would give him a 504 if he didn't already have one and will give documentation needed for OT and additional 504 accommodations he doesn't currently have. So I pass this along for anyone who's child may struggle with reading or writing and your gut tells you it may be part of a learning disability beyond PANS. My friend who shared this with me says her son has seen significant improvements and school work has gotten easier for him.

Agree with Nancy - it depends on the age and their abilities. I've described it as an allergy to strep. I explained what was happening and assured him it wouldn't be forever and we'd get him well. Problem was - he had more than Pandas. We went on to find lyme, pyroluria and just this morning - a vision problem called convergence insufficiency that's contributing to reading problems. So it's been an onion for us. But my son feels like he's stuck in the song "The bear went over the mountain." Mom keeps finding more mountains he has to climb. So for your own sanity, I'd avoid promises and certainties and keep things simple - answer their questions, try to refrain from giving more info than they want/need.

I'm not sure I'd assume that without getting some sort of insider info. Not sure about Beth's views on lyme. I agree with you that at the very least, we should use both PANDAS/PANS.

Second MDmom - these are generally used for different infections. Babesia is a red blood cell infection and you use anti-malarials as I understand it. Tindamax and Flagyl are extra-cellular abx used for cyst-busting lyme that has curled up and made itself an outer shell generally impervious to other abx. You pulse tindamax, generally on the weekends or maybe for a full week followed by a week or more off of it. I've never heard of anyone staying on tindamax on a daily basis. Going to add tindamax back into our routine in a month or so. We did it 18 months ago and had to back off because of severe herx. This time, we will start slower and see what happens. When we started tindamax, I freaked - some scary issues about cancer risks. But I also found research that said this risk was not universal - the studies showing issues looked at a specific population. I'll try to find it again. I ended up concluding we were ok taking it for a limited time.

From the email Beth sent, the infectious triggers are lyme and mycoplasma, not strep. I'd hate for the BCH retort to be "there's no strep, so all this push back is noise based on incorrect information." The media will not do a good job of splitting hairs if this becomes an issue over symantics and BCH is able to use a loophole. Let's do ourselves a favor as a community and use the term PANS in any communications instead of PANDAS. (EAMom - thanks)

You may want to see if you can strike up a conversation with Dr Theoharides at Tufts. He is a mast cell/autoimmune researcher who has looked into what role histamine plays in autism. http://www.mastcellmaster.com/ I would love his thoughts on the matter and to get him interested in PANS. I sent him an email earlier this week on a different matter and didn't hear back. But it never hurts to ask. Sometimes it takes several people bringing up the same questions before a researcher or doctor clicks with an idea. FWIW, my DD has taken 20mg Pepcid for long periods of time and it did little for her Gerd or her PANS symptoms. But perhaps something else was hindering her progress at the time.

Ok, it took me a long time to figure out how to do it, but I did post. Would still like to do more.

I'm not particularly FB savvy but am all for a coordinated effort. This is horrific. EAMom or nancy- not to put you in the coordinator's seat, but aside from stories for a reporter, is there any action that IOCDF feels would be more or less effective? Emails and posts are easily deleted by administrators who don't want to hear the noise. And as Kimballot said, it's harder to lay out a rational objection when you don't have many details. Not trying to pry into this family's personal grief or make their story more public than they'd like. There is, after all, a child's right to privacy. It seems like there'd be no shortage of support from this forum, the FB pages, the non-profits. But there should be a coordinated, focused effort. This could really be a rallying point. But not knowing hospital politics, what makes administrators pay attention (aside from news stories, which seems to be underway)? Second, if appropriate, has anyone closer to the situation found out what sort of support this family needs? Is there a way to send them messages of support? Is there a need to create a donation site for legal defense? (what was the site that was used to raise money for that bullied bus monitor in NY?) It seems like this is a role for one of the non-profits to coordinate - whether it be one of the FB groups, Beth, IOCDF - we are the soldiers. Tell us where to march. Please let us know what your contacts have to say. thanks!

Be cautious with any long term use of a nasal spray containing zinc. It may cause a loss of smell. If you see positive results from zinc supplementation, you may want to read up on pyroluria, which causes zinc/B6 deficiencies. My DS and I both have the condition and the supplements make a huge difference in DSs cognitive abilities. Huge. It's a $70 urine test. PM me if you want info. As Smarty mentioned, a zinc deficiency (from pyroluria or just a diet deficiency) can cause a loss of taste and is also a possible cause of eating disorders. I have some fascinating stuff on that as well. The yoga ball idea actually came from the school. They have kids who sit on the balls in class. Sometimes even the kids without special needs get jealous and want to use them. As for walking the homework tightrope, Smarty makes it sound like Nancy and I have it all figured out. No, we use lots of Clairol to hide the gray hairs we've suffered over this topic. We've both been at this a long time and I can't speak for her, but I still screw it up sometimes. If it makes you feel any better, I blogged about this topic and my own failures a few months ago: I just could not wrap my brain around how I could accept “as-is” and fight for what “could be” at the same time. It felt like trying to grasp the sound of one hand clapping. And yet, that is exactly what my son needed me to do. He had always given me his best. He had gone along with every painful and difficult thing I had ever asked of him. He had fought this battle with me with all his heart and had grown into an amazing, insightful and courageous young man in the process. I always thought I had given him my best, too. But not really. What I had done up to that point was given him the things that were easy for me to give. I gave my time, my ruthless “warrior mom” fight to get him well; I gave our financial resources and my intellectual abilities. But I had not given him the thing that was so very hard for me to give. It was time for me to stop sending the subliminal message that he wasn’t enough, that he had to dig deeper and become smarter, more determined, more of something he was not in that exact moment. I had to figure out how to accept – truly accept – him where he was at that moment and love him and praise him and celebrate with him, without secretly hoping for something more. He deserved that from me and after all he had been through, I had better figure out how to be there for him in the way he needed, not in the way I needed. Now, on the other hand, I also have higher expectations when he's well. The hardest part is figuring out when that is. When someone figures that one out, let me know!

Next week is OCD Awareness week. The IOCDF has events posted http://www.ocfoundation.org/awarenessweek/ They also suggest changing your FB status to read "I donate my status in support of anyone who has ever battled OCD. May they find treatment, comfort and hope. Together we can end the stigma around mental illness. Please copy and paste this as your status to promote the International OCD Foundation’s OCD Awareness Week efforts www.iocdf.org" I tend to be pretty low profile on FB but I also think that if I have to listen to my relative spout off on political issues I don't agree with, then maybe it's time he has to listen to me spout off on ending sitgma.

My son has the same "I can't do this" "I don't get it!!!!" complaints when flaring. When he's healthy, no issues. Here are a few ideas to add to Nancy's list: 1. My son loves his yoga ball. This year, we moved homework over to a coffee table instead of a dining room table. This allows him to sit and roll on the ball while doing homework. It distracts me, but it helps him. And since it's not me who needs to be able to do the homework, I try to just deal. Chewing gum also helps. 2. Ask if your son can do math homework on math websites instead of writing on worksheets. Some sites allow you to track progress online, some allow you to print out reports. Even on the ones that don't, you sometimes get a summary page at the end like "Congratulations - you got 29 out of 30 problems correct". You can do a screen print of that and send it in as evidence of completion. Here are some good sites our school district uses: http://www.livebinders.com/play/play?id=511851 https://www.xtramath.org/ (my son doesn't like this one - it has timed tests, which stress him out - but the school loves it because it stresses "automaticity" and quick recall) http://www.abcya.com/ http://www.khanacademy.org/exercisedashboard http://www.math-drills.com/ (I like this site) 3. Do homework in small chunks. Maybe 10 min at a time, with breaks in-between. Maybe have him do yoga on a break, or give him a back massage or foot/hand massage. My son loves it when I run my hands over his scalp (you know that great feeling when you get your hair washed at a salon?). If he's having hyperactivity, let him squeeze a tennis ball or fidget with a rubber band while you give the massage. This stuff helps us pace ourselves and keeps us both from getting too frustrated. 4. The best strategy I've adopted this year is that I've stopped arguing about homework. When DS comes home, he wants to go brain dead and push all the homework into the back end of the night, after dinner. But there's too much to do this and I have another child who wants my attention. So this year, I've told him I am available between 4:30-5:00 pm and 6:30-7:00 pm. If he's applying himself during these times and needs more than the half hour I've set aside, I will extend it. But I will not be at his beckon call and available whenever he decides he's ready to tackle the work. I have "office hours". If he chooses to do homework at another time, that's fine. But he'll do it alone. The beauty of this is that we both know he wants my help when he's flaring. But this way, the decision is his. I'm not forcing him to do anything. I merely lay out my availability and then he decides whether to do work then or face the natural consequences of inaction. It stops me from being a bad guy or a dictator. It puts the responsibility on him, where it belongs, even during a flair. So you are not alone. It's a really hard balance between understanding their brains aren't working yet not allowing them to quit.

Ok - no need to panic. This post won't apply to most of you. But I came across this today and had to pass along. I've been using quercetin to get on top of DDs inflammation (allergies - very inflammed nasal passages). She's also complaining of her body hurting. No specific muscle pain - just a flu-like all over body pain. So there's this researcher - Theo Theohardies at Tufts http://www.mastcellmaster.com/research.html who's a mast cell guru. Mast cells release histamine and many of DDs issues involve histamine (allergies, nausea/GERD, mood/anxiety issues, especially when sick or facing lots of oxidative stress). This doctor is involved with a company that sells a supplement that contains quercetin and luteolin - both of which I keep stumbling onto as promising topics. The product is called NeuroProtek http://www.algonot.com/neuroprotek.php I haven't decided on the merits of the product but one of the features they boast about is that they use quercetin derived from the saphora plant whereas most quercetin is derived from Fava beans. The reason they say the do this is that some people have a G6DP mutation and experience a type of anemia that can be triggered by fava beans. Anti-malarials, sulfur abx, and other things can also trigger the anemia. Hmm...what's a G6PD mutation http://en.wikipedia.org/wiki/Glucose-6-phosphate_dehydrogenase_deficiency and http://g6pddeficiency.org/index.php G6PD is one of many enzymes that help the body process carbohydrates and turn them into energy. G6PD also protects red blood cells from potentially harmful byproducts that can accumulate when a person takes certain medications, consums some foods or when the body is fighting an infection. In people with G6PD deficiency, either the RBCs do not make enough G6PD or what is produced cannot properly function. Without enough G6PD to protect them, RBCs can be damaged or destroyed. Hemolytic anemia occurs when the bone marrow (the soft, spongy part of the bone that produces new blood cells) cannot compensate for this destruction by increasing its production of RBCs. Causes of G6PD Deficiency G6PD deficiency is passed along in genes from one or both parents to a child. The gene responsible for this deficiency is on the X chromosome. G6PD deficiency is most common in African-American males. Many African-American females are partially G6PD deficient, meaning they can pass the gene for the deficiency to their children but their symptoms are less severe unless both X chromosomes are affected by G6PD deficiency. People of Mediterranean heritage, including Italians, Greeks, Arabs, and Sephardic Jews, also are commonly affected. The severity of G6PD deficiency varies among these groups � it tends to be milder in African-Americans and more severe in people of Mediterranean descent. For a scientific discussion of the different strains of G6PD Deficiency, go here. Why does G6PD deficiency occur more often in certain groups of people? It is known that Africa and the Mediterranean basin are high-risk areas for the infectious disease malaria. Researchers have found evidence that the parasite that causes this disease does not survive well in G6PD- deficient cells. So they believe that the deficiency may have developed as a protection against malaria. Kids with G6PD deficiency typically do not show any symptoms of the disorder until their red blood cells are exposed to certain triggers, which can be: illness, such as bacterial and viral infections certain painkillers and fever-reducing drugs certain antibiotics (especially those that have "sulf" in their names) certain antimalarial drugs (especially those that have "quine" in their names) Some kids with G6PD deficiency can tolerate the medications in small amounts; others cannot take them at all. Check with your doctor for more specific instructions. Go here for a list of medications that could pose a problem for a child with G6PD deficiency. Other substances can be harmful to kids with this condition when consumed � or even touched � such as fava beans and naphthalene (a chemical found in mothballs and moth crystals). Mothballs can be particularly harmful if a child accidentally swallows one, so ANY contact should be avoided. Symptoms of G6PD Deficiency A child with G6PD deficiency who is exposed to a medication or infection that triggers the destruction of RBCs may have no visible symptoms at all. In more serious cases, a child may exhibit symptoms of anemia (also known as a hemolytic crisis), including: paleness (in darker-skinned children paleness is sometimes best seen in the mouth, especially on the lips or tongue) extreme tiredness rapid heartbeat rapid breathing or shortness of breath jaundice, or yellowing of the skin and eyes, particularly in newborns an enlarged spleen dark, tea-colored urine Now, DD is 50% Greek and there was enough on this site to make me sit up and re-read. Testing is apparently iffy (surprise surprise) and there is no treatment except to "avoid triggers". But I wanted to pass along because it could be why some are having problems with certain medications or can't seem to shake the fatigue. FWIW - there are YouTube videos of Theoharides explaining the role of mast cells in autism and how controlling the inflammation can help. Haven't watched yet.

You have my complete sympathy. My DS did 1.5 yrs of lyme/bart treatment and he was symptom-free for almost 3 months, so he went off all abx over the summer. As expected, he tanked and is now back on combo abx. I knew it wasn't gone, but it's still so frustrating to not be done. DS has some school things coming up but once that is past, we'll be doing some more cyst and biofilm work (which will of course set him back and I hate knowing we'll be making things worse for awhile). DS also had a bad time after HD IVIG - prolonged herx. So I've walked in your shoes. I think calling Dr J's office is a good idea. When my DS hit his wall, we found KPU/pyroluria. We see a different LLLMD - not sure how Dr J feels about KPU. But when we treated, he made an incredible leap in recovery. So maybe something to ask about. Also, detox - tons of detox. Different things have worked and not worked for us over time. But whatever you can do to help the body get rid of junk is a plus. And don't forget the mortin. No easy answers. But just keep putting one foot in front of the other. It gets better.

My DD has one C677 mutation - she's 8, 50lbs. She takes 200 micro grams every other day. At one point, she was taking 800 mcg every day and was nuts - bipolar, angry, sad, anxious. It was horrible. We stopped everything for a week to do a urine test and she got better. So we re-started and found this very low dose to be the most helpful. She uses Yasko's Methylmate liquid drops. She used to take a methlB-12 tablet sublingually but it never seemed to make a difference one way or the other. I take 800mcg of Metagenix methylfolate daily. No methylB12. I've taken less and didn't feel as good as when I take 800mcg. I've never taken more. You can browse www.mthfr,net for some useful info. There's apparently no way to tell what an individual needs. Everyone seems to be unique in their needs. Your best guide is probably how your son feels. If he's feeling agitated, angry, anxious - try scaling back. If he feels good, it may be the right dose.

:wub: I'm so happy for you guys!! Especially that DD gets to experience life without OCD again. You guys have had such an incredibly hard journey. I hope your own recovery is just around the corner - maybe a nice Xmas present?!

My son doesn't do so well with Omega 3's either. He has KPU/pyroluria and need to supplement with Evening Primrose Oil (EPO) which is an anti-inflammatory Omega 6. Omega 3s and 6s compete for the same binding sites and pyroluriacs are Omega 6 deficient. So adding Omega 3s actually makes the Omega 6 deficiency worse by blocking receptor sites. Have you tested for pyroluria? Having that can also cause you to be low in B6, which is essential for production of glutathione (major anti-oxidant/detox) as well as possible hindering the transsulfuration pathway (detox). This could trigger tics. So just something to put on your radar.

Ok, you're wicked You'd be the worst mom ever, except my kids have already given that title to me You can be second worst mom ever, if you want to be runner up in case I ever fail to measure up to the responsibilities of my title.

Do you have any ideas on what's triggered the relapse? Some of the PANS doctors cast a wider net than others when looking for causes and possible treatments. So that may be a factor in your choice. Since you've been gone awhile, there are a few ideas that have been explored beyond strep and even lyme. The big "new" idea for one of my kids was the topic of methylation. It's the way your body uses certain vitamins/amino acids to kick start various cycles and metabolisms in your body. If you have problems with the way your body converts (methylates) these raw ingredients, you can end up with deficiencies or excesses of seratonin, dopamine, ingredients necessary for cell energy and ingredients necessary to rid the body of toxins (dopamine and toxins can both be a big trigger of tics, in addition to any autoimmune trigger). The fact that you're battling depression is completely understandable. But needing three different meds - it might be worth while to explore methylation for yourself as well. Both you and your son may have issues worth exploring. I'd search the forum archives for discussions to see if it rings any bells (Jan-April 2012 is where you'll find a lot of discussion). If this were something worth exploring, Dr T may be a good start, as he tests for these issues and also does phone consults more than some of the other docs.

Learning to swallow pills was a big help in my house. My kids practiced on tic tacs but mini M&Ms work too. For every one they swallowed, they got to eat one. My kids also have an unconventional way of taking their pills. They take a swig of water first, then push the pill into their mouths. This keeps the pill off the tongue and they think it's easier than feeling a pill sitting in your mouth. The downside is that you can only take one pill at a time this way, instead of several at a time, but it works for them. The other thing that helped was that my son had to go off all supplements on two different occasions to prepare for urine tests. Each time, he felt much worse and started to see that all the pills actually did help. Now, he never argues. He also chimes in when his younger sister complains, reassuring her that "Trust me - you do not want to skip these pills". My daughter had to stop all supplements a month ago, including her allergy meds, and she felt the effects. So she's a little more compliant now.

Wonder if a placing a petition on change.org would be simpler and reach more people - my family is a lot more likely to click once on a petition than to fill out a template letter. Anyone know much about change.org?

Don't get me wrong - I share your feelings about Conversion Disorder and did see the humor. I just worried the thread would take on an unintended tone. (plus I'm cranky over a teacher issue today and feeling a little sensitive, I suppose). As for any sort of official summary, I don't know of any conferences that do that. About the closest thing I've ever seen is Scott F.'s "Better Health Guy" blog. Scott attends a number of lyme conferences and presentations and reports on them on his site. Perhaps Vickie or Diana would be able to offer an explanation or "blessed" summary?

Sorry to be a stick in the mud, but let's not bite the hands that feed us. Gathering support for this disease has been no small feat. If researchers and clinicians have asked that information, with a potential to be taken out of context, not be discussed in social media, I think we need to be respectful of that request. It is vitally important that theories and anecdotal evidence be tested, vetted, replicated and peer reviewed if we want diagnosis and treatments to become more widely accepted. I think it's a fair request. And if we don't honor it, then these sorts of symposiums may very well stop being open to the public.