LNN

Ha! If any of us did, we would be here?! I think your fears are valid. I think I agree with Storch that if you're going to issue an ultimatum, you'd better be ready to back it up immediately - like an intervention, where the bags are packed, the car is warmed up, you have muscle-bound men in the room ready to force the issue and Rogers has a bed ready for you - before you have "the" conversation. Would it work? Only if your son is ready for it to work. I've watched family members struggle with addiction and OCD and it's only when the internal determination is there that the person has any chance of success. (Not saying addiction is a choice, but determination certainly plays a role in breaking the addiction or compulsion). Is he there yet? You're beating yourself up and feeling the threat of time because you only have legal control for another year. But you don't have "mental" control. None of us can control whether our kids "want" to cooperate with treatment. Therapy isn't about medication compliance. it's abut being willing to face your fears - and that willingness/readiness has to come from within. You can watch "Hoarders" and tell who's going to succeed based on when the loneliness and pain becomes greater than the fear. So it's not about you, mom. It's already in your son's hands. Always has been. Always will be. You can be the coach, but not the quarterback. Now, I don't mean that there's no hope. You talk about sensory issues and social phobias as opposed to an OCD driven behavior. I tink you've seen some benefits for treating DDs methylation? Have you done any testing for your son? One book I highly recommend is James Greenblatt's Answers to Anorexia http://www.jamesgreenblattmd.com/ It talks about the impact of nutritional deficiencies in eating disorders, especially zinc. Depending on the cost of Rogers and whether it would be covered by insurance, maybe a Yasko or 23andMe test would give you options that your DS found less objectionable? Just branstorming. I'm not saying methylation is the answer to world peace. Just trying to think of other things to consider if you don't think he's ready for an intervention... Where will he be living in a year? At home or away? That could play a part in how you proceed. If he'll be at home, you have more time, even if you won't have the same legal options. If he's away, the chances for relapse might be high unless he's on board before forcing a treatment.

You have tried so many antibiotics in such a short time, I wonder if you were on any of them long enough - or if perhaps a combo would work better than one at a time. No parent can ever tell you with certainty what to do. Some have amazing improvement with IVIG, some see a worsening. I just wonder if you've explored everything else and if it isn't worth asking more questions, retesting to make sure the mycoplasma is gone, before you pay out of pocket for IVIG. There's an awful lot of treatments and doctor's visits you may not be able to afford if you try IVIG prematurely, without first making sure there's no chronic issue that's just going to undo any gains you'd get from just one IVIG. I have to agree with DeeDee and mdmom - we too had additional issues beyond strep and only saw lasting gains once those issues were fixed.

I think you did the right thing by stopping the high dose of methylfolate. First, it's probably best to only change one thing at a time. So I'd probably focus on settling on the "right" dose of abx first (and testing for infections) and staying there for a few weeks. Then keep that consistent and turn to methylation issues. There isn't much written about A1298C mutations, but I don't recall reading about using methylfolate for this one. Yasko talks about using BH4 or TMG as the supplement to work with. At any rate, from my little experiment of one child, 5mg is far too high for a starting point for anyone. Some adults or teens (with C677T mutations) maybe need to build up to this, but probably fewer kids. And starting low and building up is probably a good idea for everyone. So I'd have done what you did - stop it altogether and use niacin for a few days to mop up the excess methyl groups (also keep an eye on what she eats and avoid high folate foods like fortified cereals for the next few days). When I needed to do this for my DD (now 8 but 7yo/46 lbs at the time), we stopped methylfolate for a week while things settled. Her moods calmed down considerably. It was only when she started getting moody again that I re-introduced the methylfolate, starting with one drop @ 67 micrograms, every other day (she is hetero C677T). We've stayed at one drop every other day for 7 months and she's been more stable than she's been in years. With only A1298, you may not even need any methylfolate. You may want to post a question on the mthfr.net forum or facebook's "mthfr support" page. The people there are very knowledgeable, with a few naturopaths/chiropractors who treat methylation issues who often chime in with answers. If you do decide to reintroduce methylfolate, I don't even think I'd start at 1mg. Look for something that can be given in a lower dose and built up if needed. Hopefully, things will continue to settle and you'll be able to regain your balance.

If you have a top loader, check out youtube for videos of how to open your washer to expose the drum. Ridiculously easy - two screws. But if you decide to clean the drum - poke a string thru the sponge and wrap the string around your wrist. You do not want to drop a sponge 36 inches down a tight space!

If you're sure it's metals and you're working with a doctor, look into DMSA, DMPS or EDTA, depending on the metal. If you're on your own, lots of people use chlorella or activated charcoal. I personally never saw great results from these but others have. If you suspect mercury, don't use alpha lipoic acid. It can chelate mercury, but if there's more mercury in the body than in the CNS, ALA can cross the BBB and carry mercury with it - from the area of greater concentration to the area of less concentration. So if there's more in the body than in the brain, you could inadvertently chelate out of the body tissue and into the CNS. Make sure you encourage BMs and drink plenty of water. Motrin or Enhansa can help with inflammation. Milk thistle helps detox the liver. What are you using for KPU? We did not have a significant metals problem but did have herxing when moving from one Core capsule up to two and then up to three. Backing down and then trying again in a few weeks helped. You could try a half dose per day or maybe one dose every other day to get started. If go way down the metals road, Andy Cutler is the mercury chelation guru. He has very strong opinions on the right way (his way) and the wrong way (all other ways) of chelating. He has a yahoo support group and they are very passionate. I learned a lot from his book but then decided to take a different path. You may have a different experience if metals are a greater part of your problem.

Kara - Pls tell him :) :wub: :)

Hope - thanks for the rosemary tip. Something I'll have to keep in the back of my mind. Ironically, DD is having an EEG tomorrow - she had a strange clonus reaction a few weeks ago - probably from too much cold medicine - but she also had a febrile seizure 3 yrs ago (also due to antihistamine the minute clinic told me to give her when she really had the flu). So doing the EEG to make sure there's no underlying problem. Not that an every other day drop of methylmate is giving her a high amount of rosemary, but still good to have in my mental library of strangely connected things. Let me know what dr O has to say. Jealous...

I agree with T Potter - if you've never gotten back to 100%, then there may be something in the way. We found lyme, then pyroluria. It was only by treating these things that we saw lasting gains. Pex was temporary (tho I was hugely grateful for it at the time) and IVIG was a 10 week nightmare - probably because there was undiagnosed lyme. Sorry I did it - yes (I am in the minority on this), except that it led to the lyme diagnosis, so for that, I'm grateful. But I don't think the IVIG itself helped my son. But if I've learned one thing, it's to listen to your own gut. The experience, knowledge and broad perspective of the doctors is very valuable. The input and support from other parents is helpful. But it's usually your own voice that has the right answer.

You can wash clothes with vinegar or borax for colored clothing. In addition, I'd make sure that the washing machine itself doesn't have mold between the metal drum (that your clothes sit in) and the plastic outer drum (that encases the metal drum and catches the water). I have to take apart my machine (top loader) twice a year because mold/mildew builds up on the plastic drum and then all of a sudden, I get wicked itchy and have an allergic reaction when I put on newly laundered clothes. Sure enough, I'll find it's time to clean the drum. I find that after the drum is cleaned, I have to run a full load of hot water and bleach (no clothes) to rinse everything. And then it's not uncommon for me to have to wash recently laundered clothes once or twice in the now clean machine to get rid of the stuff that was making me itch. To reduce mold from building back up, I spray the inside drum with a spray bottle of peroxide at the end of every laundry day. It's not perfect - the peroxide doesn't full get back to the plastic outer drum and I eventually have to clean it again but the peroxide spray gives me longer periods between cleanings. For things like mattresses, you can consider allergy encasings. These encase the mattress, box spring and pillows with a tight (but not air tight) barrier. Primarily used for dust mite allergies but may help with mold, assuming your bedding isn't terribly "contaminated". We use this company - http://www.missionallergy.com/ I know thieves oil is helpful - I think it's possible to put that into laundry and perhaps you can use a diffuser or sponge a dilution of oils onto furniture. I use a nebulizer we once used for asthma and difuse the bathroom and bedrooms periodically. (gosh, I sound like a paranoid nut, don't I?) I'd also consider a dehumidifier for your apartment and perhaps a really strong vacuum with a good hepa system. the allergy site I linked sells a vacuum or Dyson...you know - because money is no object for people with chronic illnesses, right? Or you might try looking for a forum that follows Shoemaker or perhaps email Scott (BetterHealthGuy) for additional suggestions or resources. I know he went down the mold path in the past few years. Good luck with the move- I hope you get relief!

Most DANS are not familiar enough with lyme. I would not drop the LLMD.

I'm confused. If your DS doesn't have a MTHFR mutation, why would you supplement with methylfolate? If his MTHFR is normal, his body is able to convert/methylate folate into methylfolate on its own. This isn't where his methylation roadblock is. So adding more methylfolate into the system could possibly produce symptoms of over-methylation. I don't know anything about LETM1. But what you're describing is the Krebs Cycle (aka the ammonia cycle) and the BH4 cycle, not the MTHFR cycle. http://www.google.com/imgres?imgurl=http://www.dramyyasko.com/wp-content/uploads/2010/06/diagram.png&imgrefurl=http://www.dramyyasko.com/diagrams-listing/&h=524&w=703&sz=207&tbnid=GweZCjMXEoeinM:&tbnh=88&tbnw=118&zoom=1&usg=__PzsVr1NdSbtnDDpOc4yKjbTOEX8=&docid=3BsVKWnakbowUM&sa=X&ei=mckHUfKjE4PO0QGVkYGADQ&ved=0CDUQ9QEwAQ&dur=377 (I so wish I could insert the picture and not just a link) There are 4 cycles involved - think of 4 cogs of a clock, with interlocking sprockets. The cog on the far left is the Krebs/ammonia cycle. This involves eliminating ammonia/urea from the body and has something to do with energy production, tho I've not studied this circle in any detail. The next cog is the BH4 cycle. Arginine is involved where the Krebs cycle interacts with the BH4 cycle. The BH4 cog is where the body uses DMG/TMG/BH4 to convert tryptophan into serotonin and tyrosine into dopamine. These seem to be the two cycles you'd care about with the LETM1 issues you describe. The third cog from the left is the folate cycle. This is where MTHFR is involved, converting folate into methylfolate and then joining forces with methylB12. From there, you move to the 4th cog - the Methionine or "methylation" cycle to create ATP (cell energy) and homocycsteine (which later gets converted into cycteine, then combines with B6 to eventually create glutathione for detox). While the 4th cog is sometimes called the "methylation" cycle, the entire process actually involves many, many methylation processes and methylation also occurs in many other processes in the body. So sometimes the term methylation is used in a broad sense and other times it's used to refer to a very specific cycle. Gets confusing. Anyway, my confusion is that I don't see where you'd supplement with methylfolate if your roadblock was in the first two cogs. Those cogs require proper methylation of arginine, nitros oxide, BH4, TMG/DMG, tryptophan, tyrosine, and probably others I'm not familiar with. However, if your doctor wants you to try methylfolate, I'm not trying to suggest I'm any expert or give medical advice. If you opt to supplement with methylfolate though, absolutely build up rather than jump in at a high dose. Yasko and Ben Lynch (mthfr.net) use 400 MICROgrams as a rough end goal for children and 800mcg for adults. But it's very individual. My DD only needs 67micrograms of methylfolate every other day. More than that and she gets angry, sad, anxious, has rapid mood cycles, oppositional - not pretty. I think she'd be locked up if we tried to give her milligrams of the stuff, let alone 7.5-10 mgs. Because she needs such a low dose, we use Yasko's methylmate B, which comes in drops, so you can adjust doses much easier. One drop = approx 67mcg. Others here use a combo that has both methylfolate + methylB12 - Thorne's Methylguard I think. But since I need the liquid in order to do such a low dose, we use the methylmate B drop of methylfolate plus 1000mcg of methylB12 sublingual tablet. As a general rule, you should always supplement both methylfolate plus methylB12 - they need each other. Hope I didn't confuse the issue for you.

You can check for yeast using the stool tests SFMom mentions but if the doctor you work with doesn't have an account with these labs and you're restricted to just using blood tests from standard labs, then you can ask for a an antibody titer test for candida albicans - one of the more common forms of troublesome yeast. We use 1000mg odorless garlic (make sure you buy odorless) at dinnertime. You can also use grapefruit seed extract or google other natural yeast treatments. You cannot rely on outward signs, in my experience.

Before you increase Florastor, try changing your probiotic. Florastor is Sacc. Boullardi, which is in the yeast family. It's supposed to be "good" yeast but my son does horrible on this. It's as if he has a yeast infection - we see increased anger, impulsivity, hyperness, inappropriate behavior. When we switched probiotics, he improved greatly. Try switching to a blended probiotic that has multiple strains in it. We use Truflora, Theralac and Ultimate Flora - we rotate all three during the week. Make sure you give the probiotics at least 2 hrs away from the antibiotic, preferably when stomach acids are low (at bedtime or at least an hour after a meal). This gives the probiotics a better chance of surviving the journey thru the stomach and actually ebing alive when they get to the intestines.

I'd consider yeast. You upped her abx. So I'd make sure you also increased probiotics. For us, adding a daily ordorless garlic pill also helped immensely. We saw a week of increased silliness/impulsiveness/hyperness and age regression and then things settled. Or ask for a candida albicans titer blood test and perhaps diflucan or nystatin.

Sometimes we all take time out to wonder "why me?" or "why my child?" You and your child need to watch this 4 minute video. Aside from the time you spend hugging your loved ones, it will be the best 4 minutes you spend today.

I would not up the dose. This seems to already be the adult dose for a child more than 88 lbs. I would instead focus on reducing inflammation and increasing detox. Motrin, resveratrol and curcumin (Enhansa) all help with inflammation. Motrin every 8 hrs steady for a week has been especially helpful in my house. Milk thistle and alpha lipoic acid are my personal favorites for detox, along with things that improve bowel movements (magnesium, psyillium husk in capsule form, miralax). I know it's really, really hard to watch the tics. They bring all sorts of PTSD and seem to give a visual to the chaos swirling around inside their brains. But it's not always infection causing the tics. Sometimes it's the body's inability to get rid of the toxins from the dying bacteria. So upping the abx (killing more) without doing detox support could actually make tics worse.

I've seen herxing within 2 days and some that didn't start until 5-10 days into a treatment. Assuming this isn't an allergic reaction (call your dr and/or use an antihistamine to see if it effects the rash), then to answer your question, I have three favorites for detox - milk thistle, alpha lipoic acid P-5-P form of B6. If I could only start one, it would be milk thistle. That said, some people who are allergic to ragweed could be sensitive to milk thistle - comes from the same family. But my DD is highly allergic to ragweed (as I am) and we both take milk thistle daily without any issues. So just an fyi... If you're concerned about milk thistle, then my second choice would be alpha lipoic acid (2-3 doses/day). Never tried burbur. Hope - charcoal comes in easy to take capsules. What makes you feel that it would be impossible - does you child not swallow pills yet? (not that I'm pushing charcoal - used to use it a lot but never felt it helped as much as the other things I've mentioned).

I think your results are going to depend on two things. First, how well are you matching the dose of l-methylfolate to the amount the body needs. There's no universal answer on dose. It's very individual. So you pick a starting point and then need to adjust up or down based on response. So if your starting point is close to what's needed, you may see a positive response in a few days. If it's too high, you may see a bad response (rapid mood swings, anger, sudden bursting into tears - very PMS-type symptoms) in a matter of days. If it's too low, you may not see any change at all. Second, with A1298C, you need more than l-methylfolate. You also want to be adding some methyl-B12 to prevent a folate trap. You also need to be adding BH4 or if you can't get that, then TMG as a supplement. Sterling Hill, a woman who runs the website mthfrsupport.com and the FB page MTHFR Support (which is public and open to everyone), writes this blog about 1298 - http://www.mthfrsupport.com/1/post/2012/1/the-importance-of-bh4-in-the-mthfr-a1298c-gene-mutation.html A little something about BH4: It is a natural occurring chemical compound that helps convert amino acids such as phenylalanine into other things such as norepinephrine, dopamine and seratonin. Lmethylfolate is where it starts and if you have MTHFR A1298C ... you are lacking BH4. So you are taking your lmethylfolate from nutrition in berries and/or a medical food such as Deplin and then it converts into BH4. Obviously there is still a block in the methylation pathway if you are CBS and/or MTHFR A1298C ... BH4 is crucial for the conversion of tyroseine and tryptophan which then converts into norepinephrine, dopamine and seratonin. Amy Yasko's BH4 lecture: Dr. Neil Rawlins MTHFR lecture and the importance of BH4 in the A1298C gene mutation. You must watch all 4 parts. This link explains BH4 conversion: http://cdn.neiglobal.com/content/blog/380-l-methylfolate.pdf This is where Dr. Neil Rawlins is recommending we obtain BH4: http://nutrimedical.com/products.jhtml?method=view&product.id=4013 So you may want to email your LLMD and ask about adding BH4 or ask if he'll contact Dr Rawlins (Kadlec Clinic, Richland, WA (509) 942-3627) to get a quick rundown on Rawlins' approach.

D3 (2000 IUs), Vitamin C (1000mg), zinc for DS (Core) and try to get DD to take Core or zicam when sick but she balks. Xclear for sinus congestion (you could also try gum with xylitol) l-lysine when it seems viral Both kids had a rough December - one cold after another, with flu-like illness that put them both flat on the couch for 7 days (tho DD tested negative for actual flu - but fever, malaise, congestion, wouldn't eat or drink - sure seemed like flu). So can't say that all my magic pills kept them healthy - but then, the entire school system was sick. Every kid who came into my house for a play date, every kid getting on the bus - they were all sick - even those with health immune systems. Thankfully, the past few weeks have been healthy again. So maybe the wave has passed. Don't forget to change toothbrushes, wash sheets in hot water, wipe down surfaces. We even have separate toothpastes (in addition to keeping everyone's toothbrushes far apart). Figured that sharing a toothpaste tube meant scraping each toothbrush against the edge of the tube. So we have 4 tubes of toothpaste.

Of the three, only zith protects against strep. Re: bactrim, found this: Bactrim is not recommended for preventative or prolonged use in middle ear infections and should not be used in the treatment of streptococcal pharyngitis (strep throat) or certain other strep infections. http://antibioticinformation.blogspot.com/2005/12/bactrim.html So yeah, maybe it could be strep. Are you seeing any neuropsych symptoms? If you do get a swab and need an abx, perhaps omnicef would help (tho being allergic to the penicillins, there's a chance she may also develop allergies to the cephalosporins (incl. omnicef). This happened to my own DD, who was covered in hives a few days after starting omnicef). Maybe call Dr J's office and ask what abx he'd recommend if it's strep. Or maybe a natural supplement? Keep us posted! You're in my thoughts...

I'll read through these today. Thanks all!!

Good to know - thanks! Have you noticed anything?

IVIG was not a good experience for my son. However, he had undiagnosed lyme. So I'd just make sure you've tested for chronic infections beyond strep beforehand.

I think the question isn't whether you can have Pandas as an adult. If you have Pandas, it seems you developed it as a child and it remains untreated as an adult. So you're not asking about adult-onset, you're asking about adult-continuance, which I think is absolutely possible if you've been untreated your whole life. You're unlikely to find a conventional doctor, who accepts insurance, who's going to pursue Pandas with you. So Dr T will probably be you're best starting point. However, there are some preliminary tests you might be able to get your PCP to order as a first pass: ASO titers (these are antibodies to strep that rise w/in 1-3 weeks of infection) Anti-DNase B titers (these are strep antibodies that rise 3-6 weeks after infection) C3d immune complex - this measure how activated your immune compliment system is - indicating whether your body is fighting an active infection (won't tel you what sort of infection - it rises with both bacterial and viral - but will tell you if your immune system is reacting to an infection) C3a and C4a immune markers - these tend to rise when your immune system is reacting to lyme and mold If any of these are high, it suggests infection/immune response. Lyme and mold are also tic triggers. A conventional lyme test (called a western blot) is not reliable because it will not look for certain markers that are highly associated with Lyme. If anyone runs a western blot and tells you it's negative, it means nothing. Maybe you don't have lyme, maybe you do. Because it's not testing for the whole picture. However, if the western blot comes back with positive markers, then you could avoid the more expensive testing options. All of the above tests, including the western blot, are covered by insurance. So you could start with your PCP if s/he is willing to order these things, and then decide whether to see Dr T. In addition to a consult charge, Dr T likes to order a number of blood tests. So anything you can do beforehand may be helpful. If you would like research articles on lyme, mold, or some of the tests mentioned above, PM me. You can also look into the topic of mold here http://www.survivingmold.com/ and the topic of detox here: http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html For my son, tics are directly correlated with his reduced ability to clear biotoxins (toxins released by infectious bacteria). Understanding methylation and the body's need for glutathione to help itself detox is very helpful regardless of any infection. Because when the time comes to fight a chronic infection, the germs are going to release dirty bombs inside your body and it's important to be able to clean up and expel the poisons and reduce inflammation damage. Here's one last article an glutathione you may find helpful: http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-mother-of_b_530494.html Best of luck.

It's a spit test. You need to spit into a vial about the diameter of a blood draw vial and fill it with about 1/2 inch of spit. The web site says it takes an adult about 5 min. to complete. My kids - the ones who've endured blood draws, pex, ivig, colonoscopies, endless pills, urine tests...they both whined like I was putting bamboo shoots under their fingernails. It's spit, for gosh sake. Under any other circumstance, they'd have been happy to spit. Took 'em each about 20 min of complaining but it got done.