LNN

Megan, You might look into N-acetylcysteine or musinex or xylitol gum or grapefruit seed extract. These things thin out mucus and are used to help treat biofilms. Here's a very long but very informative article on films and how they can make an infection impervious to antibiotics. http://bacteriality.com/2008/05/26/biofilm/

Ok - so you're clearly all over the lyme stuff. So on to EBV - when my (non-lyme) child had EBV, it lingered for months until we tried l-lysine. Within days, we saw significant improvement. Google "l-lysine + EBV" - several research studies on it. Good stuff.

I will try to write more later but my son's tics are helped with alpha lipoic acid and other detox agents. His tics are driven by too many toxins released by dying bacteria (strep or lyme in his case). So lots of focus on detox and anti-inflammatories helps them dissipate (not instantly but over a few weeks). Over the years, my son has had dramatic jerks that could be described as mycolonus or tardive dyskinesia. They were always related to his body fighting infection and not being able to shed the resulting toxins/oxidative stress efficiently. I'd be asking for longer term abx but also looking into detox supplements (milk thistle, alpha lipoic acid, resveratrol, vitamin c, bentonite clay, activated charcoal - to name a few options). Magnesium supplements also help my son.

Lyme was my immediate thought as well. Curious about which symptoms you don't feel are related to lyme - the ones you list are all common among the lyme community. Is your doctor following IDSA guidelines or ILADS guidelines for the lyme? If not ILADS, you may want to look for a doctor who does. There is a wide gap between the protocols each group recommends. I hope you find relief soon.

L-lysine is an amino acid found in many foods. It's not an essential amino acid b/c your body can make a small amount of its own. But it's still critical to health. L-lysine is an anti-viral, effective against certain viruses, including EBV and HHV. Lysine prevents these viruses from replicating, eventually lowering your viral load so your immune system can mop up the rest. This is the same way certain antibiotics, like azithromycin, work against bacterial infections. Two things to bear in mind - lysine and arginine (another amino acid) are ying/yang. If you consume a lot of foods high in arginine, you'll be limiting the lysine in your body. So keep an eye on that. Second, as for the anxiety, it probably won't become an issue right away. You can balance it out with comfort foods like peanut butter that contain tryptophan or you can supplement with tryptophan or 5-HTP. As for the zinc, no - we don't take a chewable. We use CORE, which contains a number of ingredients - primarily zinc and B-6. It's a capsule but if you let it sit in your mouth for just a few seconds before you swallow, you'll sometimes get a bitter aftertaste. When DS and I have cut back on our daily intake (he takes 4, I take 3), we stop tasting any aftertaste. My DD, even with just one pill, complains about the taste - she has a bad habit of swishing a pill around in her mouth for about 30 seconds before swallowing (which sometimes causes her to spit any pill out b/c it starts to dissolve and have a taste). But you could try something like Zicam, which is a lozenge or sublingual strip - found in any grocery store or CVS-type store.

When my DD had EBV last winter (when she was almost 7) she lost weight as well. She couldn't shake it on her own - it hung around for 3 months and the artimisinin the LLMD hoped would help didn't. We then turned to L-Lysine and within days she started to feel better. We used L-lysine for 3 weeks and she was so much better - and started to put the weight back on. The one thing we had to keep an eye on was that l-lysine can increase anxiety over time, so toward the end of her treatment, we added a little tryptophan to keep the anxiety away. The other thing you could try is zinc. Dr Greenblatt has a book about anorexia and he theorizes that zinc deficiency causes a loss of taste, which plays a role in less than adequate food intake. Klinghardt describes zinc as the immune system's bullets. So a zinc supplement might help in two ways. Greenblatt says that when you're zinc deficient, zinc has no taste. When you have enough of it, it has a bitter taste. Seems to be true. DS and I have pyroluria and the zinc supplement we take has next to no taste unless we take 3-4 pills/day. But for my DD who doesn't have a deficiency, she balks when I try to give her even one zinc capsule (like when she has a cold) because she thinks it tastes foul.

I've only found two multi's that use methylfolate. One is Thorne's - http://www.thorne.com/Products/Multiples/All_Multis/prd~VMC.jsp;jsessionid=MZWJQ2ndZ1tDnMhLGrcYCQ8yXp0wG3mLv5NHlLKTfs7JZsD9qsz1!-1077029629 and the other is from the guy who does mthfr.net - http://www.seekinghealth.com/best-supplements/best-multivitamins.html?age_range=127 (one of these is a chewable. But...Thorne's has both regular folate and methylfolate. Not sure why. Tried it for DD and she seemed to get irritable on it so I stopped. However...this was before I added methylB12 to her regimen and was only using methylfolate drops. So it could've been a folate block I was seeing and not the vitamin per se. She's not feeling well right now, but I may give another try once she seems better. On Lynch's product line, the thing I didn't like was that is has a huge amount of niacin in it. This makes NO sense to me - since niacin is what Lynch suggests for when you accidentally take too much methylfolate and need an "antidote" - niacin uses up methyl groups. So why on earth does his product line for people with MTHFR issues contain so much niacin? (like 300% RDA?) I posted this question on his forum in September and also emailed him directly. He never answered me, tho he answered other questions. This just didn't sit right with me. So for now, we're not using a multi. Your other option is to buy empty gel caps http://www.amazon.com/Empty-Gelatin-Capsules-Size--1000/dp/B000ACUJRW/ref=sr_1_sc_1?ie=UTF8&qid=1354657952&sr=8-1-spell&keywords=gel+calpsules (check the size when ordering - I just randomly pulled up an example - not sure if this is the smallest they make). and fill your own. I do this when my kids need less of a supplement and I can only find it sold in larger doses (e.g. when I want 250mg of tryptophan and can only find it in 500mg capsules). So I empty half of one into an empty one.

Are you using only methylB12? For MTHFR, you need 5-methylfolate plus methylB12. But when we started, we put 5ml of water into a medicine cup (the one that comes with any OTC medicine) and added one drop of methylfolate. I then dissolved 1/2 tablet of methylB12 (500mcg) into the cup and had DD drink it. Did this for about 2 weeks, then built up to 2 drops, then 3. Three drops turned out to be too much. We've backed down to 1 drop plus 1 whole tablet of methylB12. But your needs will be different. Best advice is to start slow. If you see any symptoms go away (rages, mood swings, depression, self harm) and then come back as you increase dose, that's a sign you may have gone above what she needs. You can then back down and hopefully see improvement at the lower dose. You may also find it helpful to avoid things with regular folate - fortified cereals, multivitamins...

I need some "peer review" from my MTHFR geek friends. I belong to (and write for) a support group of parents who have kids with a wide variety of diagnoses - ADHD, bipolar, ODD, SPD, FASD...and most of the parents have never heard of MTHFR. It's too complicated to do it justice on Facebook (which is not my favorite platform anyway). So I've drafted a blog article to introduce the topic to parents who might want to explore it more. It isn't a nitty-gritty, how-to article. It's just an intro - this is what it is and this is why you might care. But I need a few sets of eyes to look at it and make sure I haven't left out anything important and on the other hand, haven't made it too complicated. If any of my geek friends are willing to be an editor, can you PM your email so I can send it to you for your feedback? Thanks!

I don't know if the methyl B-12 is behind your light switch or not. But I saw the same "miracle" when my DS began taking a zinc/B6 supplement for a deficiency known as pyroluria (aka KPU). So I do know that if you happen upon a deficiency, you can see amazing response when you start to treat it. So I think it's entirely possible. MethylB12 supposedly has a self-limiting absorption rate of 1.5-1.6 mcg per dose (per wikipedia http://en.wikipedia.org/wiki/Vitamin_B12) investigations into the intestinal absorption of B12 point out that the upper limit per single dose, under normal conditions, is about 1.5 µg: "Studies in normal persons indicated that about 1.5 µg is assimilated when a single dose varying from 5 to 50 µg is administered by mouth. In a similar study Swendseid et al. stated that the average maximum absorption was 1.6 µg It's a water soluable vitamin that does may be stored for long periods of time in the liver. But there are several health or genetic issues that interfere with absorption and deficiencies are not uncommon. Pernicious anemia, Crohn's, antacids and H2 blockers, genetic mutations, cholestyramine and certain bacterial overgrowths in the gut can all lead to a deficiency. Tami is right in that B-12 does regulate certain antibodies. It activates TH1 suppressor T cells, which down-regulate the production of IgE antibodies. So it's more involved with regulating allergic response than an infection-fighting response per se. But B-12 is needed by every cell in our body, so in a broad sense, it is essential to the immune system for fighting infection. The Wiki article is worth reading in its entirety. If you feel its helping your kids, then you might be on to something. Keep us all posted!

We ran a conventional lyme test 3 months prior to IVIG and it was negative. After my son's severe negative reaction to HD IVIG, we waited 3 months and ran an Igenex lyme test, which showed multiple positive or indeterminate bands. Maybe the IVIG made his immune system strong enough to start to fight the lyme and that's what gave us the different test results. I don't know. I completely understand your emotions right now. Unfortunately, no one can say anything to reassure you about how your child will respond, regardless of how our own kids fared. All you can do is give it your best shot. If you do see more negative than positive, then I'd suggest re-testing about 2-3 months after the IVIG. But for now, all you can do is stay positive and have hope.

My son had a very bad experience with his one and only HD IVIG - 10 weeks of worsening. Took months to get back to where he was before the IVIG. Lots of kicking myself for stirring the pot. After the tailspin, he was dx'd with lyme and bartonella. He's gotten progressively better from treating the lyme but it's been a long road and we're not done yet. Form what I can gather from some people seeing great results from IVIG and others not so much, it seems that those with some underlying/chronic infection are the ones more likely to struggle for long periods of time post-IVIG. Not sure if you tested to make sure the pnuemonia infection was gone. That may be one possibility to pursue. Or test for lyme. With the worsening on Augmentin XR, sounds like there's some sort of bacterial infection still in the picture. I agree it sounds like herxing and detox could help. We use milk thistle, alpha lipoic acid, sometimes resveratrol, and sometimes activated charcoal. We also use motrin 2x/day during flares.

When we called Dr J 2 yrs ago, we were given an appt 3 months out. But two weeks later, they called and offered us an appt. two days from the day they were calling. We couldn't make it and ended up with a different LLMD. But with most LLMDs, if you can go at the drop of a hat, you might get in pretty quickly. While LLMDs don't accept insurance, they usually give you the insurance claim form you need to submit your own claim. Once we hit our deductible, our LLMD appts get reimbursed at 60% (because he's considered out of network). When you make an appt, ask to be put on a cancellation list and they'll call you if time slots open up before your scheduled appt.

It could be that you're seeing a yeast die off and the toxins from the die off are triggering the tics. One option is to continue at the higher dose probiotics for a week or so and see if you start to see a decrease. If you do this, I'd add some detox support, like activated charcoal, to bind the toxins in the gut and reduce the chance the toxins make their way into the blood stream. You can also add additional detox but if you've never used them before, you'd be adding multiple things into the mix and it could get confusing. Activated charcoal is pretty benign and should be fine to introduce without worrying about side effects. We use 1-6 capsules (taken away from abx - maybe take 30 min after the probiotics?). Make sure you drink enough fluids, as charcoal can be binding. You may see the stool turn a little green - this is normal while taking charcoal. Another option is to use odorless garlic - I saw an increase in silliness/hyperness for a week but then things calmed down. Or you can stop the probiotics, wait to see if the tics decrease, then slowly increase the dose again. It seems that your low dose may not be addressing yeast sufficiently. For my son, who was once a huge ticcer, the tics are definitely related to too many toxins not being cleared quickly enough. Once you get past this, I'd spend some time looking into detox and down the road, consider adding additional things like B6, alpha lipoic acid, resveratrol, charcoal or bentonite clay (comes in capsules), or even glutathione shots if you have a doctor who will give them.

Since your son has two mutations, it makes sense that he'll need more than my DD once you figure it all out. From what I've read, people with one mutation turn folate into methylfolate @ 40-60% effectively and people with two mutations can only convert @ 10% of the folate they consume. So your DS is probably going to need more than my DD. But the three "experts" I've read (Yasko, Van Konyenberg and Lynch) suggest that 400mcg methylfolate is a rough target for children and 800mcg for adults. They all say there's no set amount, that everyone is different. But 1gram for a child seems quite high for an initial goal. Given that you'll be working up and also adding back other things and trying to figure out the rash, it's going to be tricky. I'd probably consider two things - not going above 400mcg until you've got everything else figured out and I'd also get some niacinamide. If you see a rage or oppositional behavior and you think it could be from methylfolate, sprinkle a small amount of niacinamide (vitamin B3) into something he can eat (I hide mine in the creme of an oreo). Lynch suggests 50mg. I could only find 500mg capsules, so I open one up and try to sprinkle about 1/10 of the capsule - hardly an accurate measurement but the best I could do. If you see a calming effect, then you'll know to back down on the methylfolate. For us, it only took a day or two for things to calm down when I lowered the dose. It's a pretty fast-acting response. If in a few months, if you're still seeing mood issues and infection doesn't seem to be the driving factor, then circle back and tinker with an increase in methylfolate. It's also possible that illness could cause the body to need more methylfolate than it does on a regular basis. So in the back of my mind, I remind myself DD may need a bit more if she gets sick and I see mood issues return. I know a lot of people cringe at the idea of messing around with this in such a "mad scientist" sort of way. But it's such a relatively new idea that there just isn't any way to know what one individual needs without tinkering. It's virtually unstudied in kids, yet I think it could be at the root of so many "childhood bipolar" diagnoses.

Ooops! I should've typed MICROgrams (mcg) not MG. Thorne's contains 200mcg of methylfolate. As for my DD, she takes a very, very low dose - just one drop of Yasko's methylmate B liquid, which is approx 67mcg of methylfolate. When we started out, I started at one drop and built up to 3 drops/day (the label says 1-6 drops/day). The first few weeks, I saw nothing but she was also in a good place. We built up and then all h**l broke loose. I didn't make the connection at first but when we stopped all supplements to do an amino acid test, evil child melted away within 36 hrs. So I slowly added things back and when I got to 2 drops evil child started to come back. I read www.mthfr.net almost in its entirety and found a case study where a guy was overdosing himself. Dr Lynch suggested a small amount of niacinamide (50mg) to counteract the overmethylation. Sure enough, DD's rage/evilness dissipated in about 45 min. So I backed off the methylfolate and now she's been steady mood-wise for months. Evil child (rapid cycle mood swings, provokes fights, ODD) - starts to show up if she takes the multi with the regular folate. But there doesn't seem to be a set protocol. Everyones' needs seem to be different and its very much trial and error. I only knew where DDs line was by crossing it and then backing down. Highly recommend scouring mthfr.net for tidbits or you can PM me. I don't mean to hijack the thread.

Yes, unfortunately, introducing one thing at a time would've made this a little easier. But it is what it is. To start, I think I'd stop all but the augmentin. Give that a week. Then add the probiotic (at least 2 hrs away from abx). If you've used both before, I might consider keeping both on board. Then a week later, add the diflucan back or consider something like garlic (depending on your dr's preferences). I think I'd then add back the B6 as that helps detox pathways. Then I'd go back to the methylfolate. Then the Vitamin D. The fish oil and the multivitamin are to me the two that need the most cautious approach. Not that they'd be causing the rash but because they're the ones that are most likely to disagree with someone. If you have pyroluria (KPU), you need evening primrose oil and not an omega 3 fish oil. So you may want to rule out pyroluria. For the multivitamin - since it seems you know you have an MTHFR issue, I'd avoid anything that contains regular folate. Even tho I've read sites that say it's only an issue for those who are heterozygous (2 mutations), my DD who has only one mutation reacts badly to any multi with regular folate (even Thorne's which has 200mg regular folate and 200 mg methylfolate). She also gets angry if she eats fortified cereal. So I stopped buying it. Haven't yet found a suitable multi for her. Nothing aside from the augmentin screams out as a source for a rash. And like you, I think "die off". I'd probably be using an antihistamine to make sure that you didn't run into a breathing crisis if it does happen to be an allergic reaction. But if you can establish that it's not an allergy, then I think using an antihistamine and introducing things back gradually might get you back on track. Good luck!

This is a topic very near and dear to my heart and I'm hoping some of our resident experts chime in on whatever details I miss. ERP (exposure/response prevention) is one type of CBT (cognitive behavior therapy). ERP is specifically designed to help you face your OCD thoughts and train yourself to not give in to the compulsion. OCD is basically a superstition driven by an intense fear that something tragic will happen to you or someone you love. So "if I eat this food that has a lumpy texture, it will get stuck in my throat and I'll die". Or "I'm terrified this plane is going to crash, so if I turn the knob holding my tray table so that it's perfectly vertical, I'll have made the plane "perfect" and it won't crash". Sometimes, the compulsions are done just to make you feel balanced or "just right" - like "I need to touch the wall 4 times before going through the hallway" just because it feels too uneven if I don't. But I need to do this or I can't move on with what I was doing. For these thoughts, ERP helps you "prevent" your response (control how you chose to respond rather than being compelled to respond) and it addresses your fears by making that exposing you to that fear so often that it loses its impact. Someone "afraid of being laughed at" would need to imagine being laughed at or ask people to laugh at them so often that it just became a boring topic. The rituals that come with OCD are basically superstitions - if I do x behavior, Y consequence won't happen. To extinguish the ritual, you need to extinguish the underlying exaggerated fear - by making it boring and old news. You do extensive "exposure" to do this. There are several "categories" of OCD - contamination fears, checking (need for perfection, fear of mistakes), intrusive thoughts(bad thoughts about self, fears of harming self or others), scrupulosity (fear of being a bad person/religious condemnation), symmetry (need for evenness, counting compulsions) and hoarding (some argue this may be a different issue governed by a different part of the brain). General anxiety - fears not accompanied by rituals - are usually dealt with a different way, with CBT. CBT focuses on the fear but doesn't spend time trying to extinguish behaviors/rituals. Both approaches teach the person to be in control of their own thoughts. Instead of seeing themselves as a victim - someone who must obey these intrusive, overwhelming thoughts, they learn to see themselves as empowered and resilient. The therapy focuses on changing their perspective. All OCD and anxiety fears are rooted in a morsel of real threat. Yes, people get laughed at. So you don't waste time arguing over the thought. You focus on how the person can cope with an aftermath. So you get laughed at. So what? You can handle that. It's all about resilience. It can be very empowering and the skills/mindset lasts a lifetime. In all cases, the parent's role is to be the coach. You can't take the fears away. You can't be the rescuer. You cheer them on and tell them you believe in them. But they are the ones who need to talk back to the thoughts and take charge. Another excellent book on how to do this is John March's Talking Back to OCD. For makeup - one approach would be to have your DD give herself only 3 looks in the mirror. She's locked in a "checking" sort of ritual. Initially, she'd find this limitation impossible. But over time, her goal would be to only check the mirror three times. Then 2, then once, or maybe even go in public with no makeup. But you break things down into very tiny babysteps so you set her up for success. You don't ask her to do more than she's capable of at that time. She also uses a "fear thermometer" to gauge her internal feelings. You tackle things up to a certain fear number - maybe 7 - but once her fear goes above 9, you back down. Fight/flight has kicked in and she'll no longer be able to focus on the exercise. This is where a true ERP therapist can be a huge help, to teach you both how to do this right and not feel defeated. For anger - this isn't really an ERP issue IMO. My DS once had horrible rages. You can't talk to someone in the middle of the rage. You're right in what you're doing - target an inanimate object to punch, go off to a place where you won't harm others physically or verbally. Don't punish for letting feelings out. We don't get to chose the feelings. But we do get to chose how we express those feelings. So no punishment for feeling angry. Only consequences (after the storm blows over) for not venting the anger safely. You can sometimes get anger when an OCD ritual is interrupted. But that angry outburst is, in my mind, handled differently than OCD or anxiety. For my DS, we first worked on appropriate expression of anger (punch a pillow, scream in your room). All of us need time to release that anger. But on the other side of that explosion, you can be a sounding board. Now is not the time to lecture. Now is the time to understand. Help him verbalize and re-set. Help him examine the trigger and discuss ways to do things differently next time. Much much later, discuss any consequences for trashing his room or using hateful words. Let him be part of choosing the punishment. Again, the punishment isn't for having those feelings. Only for making bad choices about how he handled it. This was always a time that drew me and DS closer. I became his ally and coach. The Explosive Child is a good read for this. As sosudden says, trying any of this at the peak of a flare isn't very productive. BUT...I still think it's helpful to talk about the strategies and lay the groundwork. Learn as much as you can and make plans for how you can try to do ERP in baby steps. Then, as your child starts to calm down and come off of a flare, you have the plan ready and you can start to tackle it. You may fail lots of times. But you have a road map. As the child gets better, it gets easier - AND you have tools for next time. It takes time for find a good therapist. So start now and then you can be ready for when your child is in a better place to tackle things. I think you'll find LOTS of parents felt the way you did - no way can my kid do this. But I think they all say that once they learned how to do it correctly with a good therapist, it made a world of difference. It's life changing - and the skills stay with you for life.

That's not a particularly large amount. An orange has about 70mg of C, an glass of OJ has about 125mg. Advocates of large doses of C talk about taking 2000-3000 mg. So I wouldn't think 500mg is overboard. My own son, who's had tics in the past, takes 1000mg without issue. I found several google hits than talked about using C as a way to calm tics, as C is needed to turn tryptophan into serotonin. C also acts an an antioxidant, clearing the body of toxins and dead cells. The only thing I could think of would be if this were a herx-like response to additional toxins being cleared. But it's a low dose, so that's a stretch, but who knows. Anything else that could be at play? Change in meds? Change in health? Any mold exposure?

Jill and Kimballot - thanks for the additional input. I've scheduled an appt with an audiologist in 2 weeks just to check it out once and for all. DS was initially against it - mom dragging him to yet another doc, after making him get glasses and do vision therapy. His friend wears hearing aids, so he was worried that would be the next apparatus I forced on him. But I've told him that's not going to happen. But since we've hit our deductible, it's worth checking out. EmilyK - if you missed it, here's a link that explains CI pretty well http://www.childrensvision.com/reading.htm You'd need to see a behavioral optometrist, not a regular optometrist, for an evaluation. the site has a link to get referrals to docs in your area.

Not that I'm aware of. How much vitamin C?

Eljay1 - when you switched off rifampin and back to bactrim, was it because he was stalled in his progress or because his symptoms were returning/escalating? Did the bactrim bring back new symptoms or just continue the slide that had started while still on the rifampin? Trying to understand if this looks like neither abx is working or if it looks like a herx from switching back to the bactrim... I would do 2/day motrin and look into using something like alpha lipoic acid or resveratrol to help the body produce glutathione (for detox). My son's tics seemed to return after a long hiatus only when we killed lyme faster than he could handle (dying spirochetes release toxins that were a tic trigger for him). You could also talk to your LLMD about using tryptophan or 5-HTP to help with the anxiety/OCD and maybe discuss pulsing his abx to give his body a chance to detox between doses. I think looking into yeast is a good idea. We introduced garlic (make sure you get the odorless variety). Both kids blipped with a few days of increased silliness/hyperness but then settled down. We now give one garlic pill every day. I get the going broke thing. It forces you to make choices that you shouldn't have to make. Some lyme organizations offer some financial aid - it might be worth looking into. KathyN - I can see the logic of your protocol for Pandas, but would hesitate to use it for lyme. The last thing you want to do for a chronic lyme infection is suppress the immune system. But I hope it really helps your son!

I'm thankful for all the crazy ideas, nerdy research and complete support I always find here. I'm especially thankful for the friendships I've made and the closeness we share. You and your kids have become closer than some of my biological family. It's next to impossible to find others who get excited about neurons - having a place where I'm understood and not alone is priceless. Wishing you all a boring, crisis-free Thanksgiving!

You might want to ask on the lyme forum or PM SFMom - I know she dealt with Coxsakies extensively. I like L-Lysine as an antiviral (can get at any health food store or amazon). Research has found that it prevents replication of HHV and EBV. Not sure about coxsakies but I want to say SFMom used lysine in addition to some other anti-virals.

Amy - thanks for the help. Good to know that the setting could be part of the issue. I spoke with a friend whose son wears hearing aids, got the name of a good audiologist and will see if I can get in before the end of the yr. Otherwise, our huge deductible resets. DS sees his pediatrician for his annual physical next week and last time this cropped up, she was able to some brief eval with a wired device and gave us the all clear. Colleen and Emily - here's a good summary on convergence insufficiency http://www.childrensvision.com/reading.htm While letter transposition isn't part of CI, my DS did have a number of errors when she tested for reversals. No only does he flip letters, he also flips words - so he doesn't see the difference between "the dog sat on the rug" and "the dog sat no the rug". He also has a major tracking issue, where his eyes bounce off the line he's reading and he's suddenly looking at a word on the line above or below - loses his place all the time and gets very frustrated. He also skips words - especially small words like the, he, they - while reading and writing. The therapy does seem to be helping. Colleen - not all eye doctors test for or believe in treating convergence insufficiency. Don't totally understand the controversy, but you'd need to go to a behavioral optometrist for testing. My DD was diagnosed as having lazy eye by her pediatrician when she was 4. Lazy eye is absolutely part of convergence insufficiency. Yet the eye doctor we were referred to never addressed the lazy eye and only gave her glasses for far sightedness. She always said the glasses didn't help and now I know why - they weren't the right glasses. This new doctor gave her bifocals with part of the lens that bends light to help with the CI - and she wears her glasses all the time now, willingly. We found our doctor thru this site https://covdwp.memberpoint.com/WebPortal/BuyersGuide/ProfessionalSearch.aspx but there are other sites as well and I know of 2 doctors in my area who don't show up when I search this site. So you need to poke around a few different referral sites.