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LNN

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  1. Like
    LNN got a reaction from SSS in Panda's or Lymes? Help   
    For us, it was many, many months of combo abx. Once it's been there for awhile, one month is not enough. For us, treatment was more than just abx. It included nutritional supplements, removing some minor mold issues and some other things. Some have been helped by homeopathy but it didn't help my son. Our LLMD is about an hour east of Dr B. But as others have said - there is no "right" doctor. They all have their pros and cons. It's a matter of finding the "right" doctor for you.
     
    You mention your son getting "emotional" on antibiotics. You may want to search the forum archives for "detox" and "herx" - and google "herxheimer response" - a "worse before you get better" response very common in lyme treatments. Also be sure to add 30-50 billion CFUs of probiotics, taken at least 2 hrs away from antibiotics, to replenish the gut bacteria that gets killed by antibiotics.
  2. Like
    LNN reacted to SSS in Panda's or Lymes? Help   
    It did not say Igenex came back negative. Waiting on Igenex testing that Dr. B had the knowledge and experience to order. AND once Igenex test is back, it must be looked at closely to see which bands are reactive.
     
    To OP: please make sure you have your own copies of EVERY test that has been run by Dr. T's office-
    we all need to make sure we have copies, and look them over, too.
  3. Like
    LNN reacted to WorriedDADNMOM in Is it typical for PANDAS dr. to not file insurance?   
    4nikki.....I agree the short answer is yes. I really hope I am not reading the post wrong as to who your are sarcastic about......Pandas docs, Insurance co's, or whoever......If I am.....I truly am sorry, but I had to chime in.
     
    (If I am reading your post correctly-----sorry in advance if I am not) I strongly disagree with the sarcasm. It is about money to some extent........but, I would venture to say many of the Pandas docs, for many reasons, including ones you listed, are why they don't take insurance.....including limited treatments and not being able to get reimbursed for services or tests or treatments. Many, if not most give a rip about our kiddos and to a slightly lesser extent, our families. Pandas, Autism, Pans and the whole alphabet soup diagnosis, can be very difficult on a child and family.
     
    Any treatment outside the, what I call, "lame stream' medicine is "oh so bad......not standard protocol" So much is dictated by the govt thru regulation, the CDC, AMA, AAP and then Medicare. We are slowly being corralled into a single payer system with "standard treatments" where we won't have any choice whatsoever on varying treatments or alternative/natural medicines. The un-Holy alliance with Big Govt, Big Pharma, AMA,AAP ect will limit and hurt the ones that need the most intervention.
     
    I tried with regular docs with my Pandas/Pans kiddos to try and get help. We were desperate, as we had behaviors, tics, movements, neurological stuff, psychological stuff.......the whole gamut.
     
    I refused to pay two bills where I got jack**** out of the visits and got no help.......whatsoever.......just a "put her on an SSRI" from some young punk Pedi that did not know "jack****.
     
    But I went to a DAN/Integrative doc before he became a"Leading Pandas Doc" and spent 4 hours on our first visit, got the help we needed and have paid a ton of money for visits, abx, supplements, testing etc.......
     
    You tell me.....few hundred bucks for nothing.......VS.....15k over a few years for attentive doc and staff, treatment, help and valuable info to help manage the situation and future infections and exacerbation's. For us, there was not a price tag I could put on my daughter being happy, healthy....... all that she could be.........let alone..........my family functioning optimally.
     
    I know some on this board are not as fortunate to have the ability/resources to get to a good doc. But I had to comment that I think it is more the insurance companies and their alignment with big govt that are allowing our kiddos to fall through the cracks in our system.
  4. Like
    LNN got a reaction from TeamTyrion in So when will the flare end?   
    Sacc B makes my son rage and display "yeast-like" behaviors - tics, sillyness, impulsiveness, brain fog. It isn't a "good" yeast for everybody. NAC makes my daughter go nutso - rage, depression, mood swings. It makes me depressed and raised my ALT and AST liver enzymes - we both have CBS mutations and can't tolerate the sulfur level of NAC Antihistamines (specifically zrytec) gives my daughter anti-cholinergic symptoms like shaking, tremors, and tachycardia. So I'd consider methodically removing one of these, or the Vit D as smarty suggests, and see what happens over 2 weeks. If nothing changes, you can probably add it back. Then remove something else.
     
    As for a never-ending flare, I insisted my son only had strep issues and for 2 yrs, chased strep, blamed "exposure" to friends who had strep, etc. Strep was a big problem for us but so were lyme and mold - I just refused to look for it in those places. When I finally did, we made progress. So if it isn't the supplements, it's possible there's another root cause beyond strep that you haven't found yet.
     
    I get how the tics are unsettling, They kill me too because they mean something's wrong. But...I'll take them any day over having my son confess that he's having intrusive thoughts about harming me or raging so badly that he loses friends. Those times were way worse.
  5. Like
    LNN got a reaction from TeamTyrion in Tourettes and Histamine...and methylation   
    Well, I figured this would be a swamp and I also figured the majority here would have undermethylators. Sigh.
    Like every neurotransmitter, even our nemesis glutamate, none are pure evil. They're all necessary. It's just about balance. I'd always ignored the discussions about Histamine receptors because they never applied to DS and while DD has high histamine, hers was under control.
     
    When I saw these TS studies, it made me realize that the very cycles that were affecting DD could also be affecting DS - in the exact opposite ways. So I went on a google fest looking for ways to increase histamine and of course, the majority of ink is spent on how to decrease it. There are histamine supplements but I hesitate on that - not sure it's a matter of adding more histamine. Histamine is methylated into two components - histadine and glutamate. Certainly don't need to be adding more glutamate. What I want to focus on is that road junction where the body decides how much histadine it can make and I'm just not sure that adding more of the raw ingredient is the right place to focus. That's what I'm hoping someone can help me with.
     
    There are 4 types of histamine receptors, as far as I can tell. And things like Pepcid and zyrtec seem to work by blocking particular receptors, rather than actually reducing the raw supply of histamine. I "think" quercetin and lutein act upstream, actually reducing the amount of histamine released by mast cells. But all these things are reducers in one way or another. How do you upregulate the release of histamine? Niacin does this briefly - that's one reason why you get a "flush" from it - it's the small capillaries releasing histamine and prostaglandins (something else I need to learn about). But once that histamine is released, you've temporarily depleted the supply. I need to figure out how to increase the supply - but at the right point in the cycle. Not by necessarily dumping more raw material into the pot and hoping it gets sorted out correctly. Where is the roadblock? This is, I think, where the tic is originating.
     
    Walsh, Pfeiffer & co. are vague on this, as they are on many specifics of their work. One one hand, I'm amazed at how insightful they were 40-50 years ago and how on target their basic theories are. On the other hand, Walsh's work continues to be based on general symptoms and forces you to put yourself into one bucket or the other (under or over methylator) when in reality, you can be an undermethylator at one point in the chemical highway but an overmethylator at another point and knowing your gene status at these various junctions can be really informative. This is the piece I'm searching for. I can't throw spaghetti at the wall to see what sticks and add x, y, and z. when 23andMe and my own experience tells my that too much x and y send DS into orbit.
     
    I need some help identifying what x, y and z are and then I want to systematically adjust one at a time. So far, it "seems" that increasing "folate" (and Pfeiffer uses this term without recognizing that different forms of "folate" can have major differences because MTHFR wasn't well studied back then) would be helpful, along with the right form of B12 and some niacin. But this needs to be done in a way that doesn't add too many methyl donors b/c DS is already an overmethylator (thus DS needs to avoid SAMe like the plague even tho it plays a role in histamine regulation).
     
    I think this weekend's experiment will be to add some folinic acid and add some additional niacin to DS's mix. I'll keep you posted...
     
    Nicklemama and Peglem - just an fyi on the antihistamines - switching now to a story about my daughter. She has MTHFR +/- and terrible allergies. So she's taken Zyrtec and various antihistamines her whole life. Three times now we've had severe reactions because of antihistamines. When she was 4, the minute clinic dr. told me her flu wasn't the flu but an allergy and I should give an antihistamine. She then spiked a fever and antihistamines can lower your seizure threshold. She had a febrile seizure as a result. Then when she was 7, she had a cold and I was dosing cold medicines every 6 hrs as directed - but for many days in a row. It provoked an anti-cholinergic response with horrible tremors, spastic movements, spaciness. We ended up needing an EEG a few weeks later (which was thankfully normal). But I realized I could never again rely on steady doses of cold meds. Then recently, she'd been taking a nightly Zyrtec for fall & winter allergies and she started having tachycardia (150 bpm) for 2 hrs at a time and having whole body tremors. This would happen several days in a row, several times a month. When it finally dawned on me that it felt similar to her anti-cholinergic episode from the cold meds, I stopped the zyrtec and the symptoms went away.
     
    Googling taught me that antihistamines block choline receptors and can provoke tremor/seizure like symptoms. DD also did a spectracell test that showed a choline deficiency. I've started giving her choline (100mg daily) and surprisingly, the body itchiness and allergy symptoms that were prompting me to give her zyrtec in the first place have stopped. So it seems she was 1. already deficient in choline and then 2. I was blocking choline receptors and this was depleting the system even more. So peglem - Allie's response may have something to do with a choline deficiency. To anyone using daily allergy meds - just a word of caution. Indefinite daily dosing can trigger some adverse effects that look like tremors and POTS. Check choline deficiency as a possible issue.
  6. Like
    LNN reacted to Mayzoo in strep question   
    Are his titers rising or falling? If his titers are falling, you can try dropping the abx and retest his titers again later. If they are rising, then I would suspect the infection is somewhere besides his throat.
     
    Strep can be in many different parts of the body, and it is hard to culture for them all. Sinuses can be cultured. I have also heard of strep in joints, kidneys (Urine analysis), teeth (rapid strep test on teeth only), and other places as well.
  7. Like
    LNN got a reaction from TeamTyrion in zinc users   
    I lean toward picolinate form - tho you can find articles supporting both forms. I love Biopure's Core - DS does far better on it than on any other source (but he is strongly + for pyroluria, so that probably plays a role in his response, as he needs all the additional minerals in Core). The B6 is important for everyone - major player in the transsulfuration pathway and in detox/glutathione production. But enough is as good as a feast so try to stay with supps that don't go overboard on dosages hundreds of times greater than RDA.
     
    Every few months, we do a "zinc challenge" - take 10ml of liquid zinc (from amazon). If it has a strong metallic taste, you're good in the zinc dept. If it has no taste, you likely have a pretty decent deficiency. i use that to judge whether each of us is at the right dose and then at least once a year we do a spectracell test to check levels of various nutrients.
     
    Without school to use as a barometer, you can ask him about his dreams. Those w/low zinc don't recall dreams as well as those who are plentiful in ziinc. For DS, we noticed he also got subtle humor quicker when he had the right amt of zinc.
  8. Like
    LNN got a reaction from JuliaFaith in Brain Imaging Differences in Tourette and PANDAS   
    Some of my FB friends passed this along....
     
    Brain images of neuroinflammation in children with Tourette syndrome are different from those in children with neuropsychiatric disorders related to streptococcal infections, new research shows.
    http://www.medscape.com/viewarticle/826614
  9. Like
    LNN got a reaction from MomWithOCDSon in Brain Imaging Differences in Tourette and PANDAS   
    Some of my FB friends passed this along....
     
    Brain images of neuroinflammation in children with Tourette syndrome are different from those in children with neuropsychiatric disorders related to streptococcal infections, new research shows.
    http://www.medscape.com/viewarticle/826614
  10. Like
    LNN got a reaction from TeamTyrion in When to keep pushing for Lyme?   
    My son went thru 2.5 yrs of lyme treatment after 2+ years of unsuccessfully trying to treat Pandas - so I understand why Pandas/Lyme parents are so eager to save others from wasted time. However, I agree with the others who say if there aren't symptoms, then don't treat. On the other hand, if the $200 is available, and there are some symptoms that don't seem to be resolving, then testing thru Igenex does give you on more data point. It's a personal decision and you should always follow your own gut, not the opinions of internet parents who only know a sliver of your situation.
     
    That said, I found my own lyme/Pandas ticcer son has multiple triggers for his tics. Yes, he tics when he has an active bacterial infection - be it strep or lyme. But even a year after stopping abx and going months with no symptoms whatsoever, he may still have tics crop up and we've found that mold is a strong trigger for him. Not talking about black mold creeping up the walls of damp sheet rock. I'm talking about mildew on the windows in the tweens' bathroom (the one that's subjected to too long, too hot showers). Or mildew on the drum of the washing machine that made the clothes musty and caused two of us the itch like crazy until we cleaned the drum and re-washed the clothes. Or mold on the bottom of the window air conditioner drip trays (or in FL, air ducts of a central air system.). Within days of finding and eliminating a mold source, the tics stop.
     
    So a mold source - in your home, in his school - might be something to rule in or out. You can test for inflammation markers that tend to rise with mold exposure and you can test a gene that indicated whether you can clear mold toxins well (HLA-DR gene). These blood tests have been covered by our insurance and can be done at any commercial lab. You can find more info here: http://www.survivingmold.com/diagnosis/lab-tests Also read "The Biotoxin Pathway" on the same site. Very helpful perspective.
  11. Like
    LNN got a reaction from philamom in Neurologist says today: it's PANDAS   
    S - You know how some people have underwear with the days of the week on them? I'm going to get you some that have diagnoses of the day (week/month/yr.) on them! ASD, PANS, 2 pairs that say LD (the baby blue ones will stand for learning disabilities and the green ones will be for lyme disease), OCD, GERD and then one that is just plain white with no words - and will represent the time when no diagnosis is needed because she (and you) are healed.
     
    You've been thru so much and I so admire your ability to get up after being knocked down. With 5 years backward perspective, you're absolutely right. Be in the moment. With that comes so much. You have amazing children, an awesome husband and a depth of spirit that inspires. Stay strong. xoxox
  12. Like
    LNN got a reaction from Missmom in Neurologist says today: it's PANDAS   
    S - You know how some people have underwear with the days of the week on them? I'm going to get you some that have diagnoses of the day (week/month/yr.) on them! ASD, PANS, 2 pairs that say LD (the baby blue ones will stand for learning disabilities and the green ones will be for lyme disease), OCD, GERD and then one that is just plain white with no words - and will represent the time when no diagnosis is needed because she (and you) are healed.
     
    You've been thru so much and I so admire your ability to get up after being knocked down. With 5 years backward perspective, you're absolutely right. Be in the moment. With that comes so much. You have amazing children, an awesome husband and a depth of spirit that inspires. Stay strong. xoxox
  13. Like
    LNN got a reaction from JenniferG in 23andMe testing   
    Nancy - all I need to do is head over to a few FB pages or talk to a few other moms who've already done this and I quickly realize how much I still have to learn. My poor guinea pig kids
     
    E - after looking at Jennifer's Courtagen report and comparing it to the 23andMe report, the genetic Genie report (which is like Yasko's) and a sample of a Prometheus report (another app that analyzes your results for you - cost = $2) - I have to scratch my head ans ask why Dr T is so in love with Courtagen. Unless your child has clear signs of mitochondrial disease, I don't see the value. 23andMe gave me a file that I imported into Excel and it has 960,000 individual SNPs (with maybe 3-7 SNPs per gene). It includes both regular dna and mitochondiral DNA and clearly has way more info than the average person wants or needs. But it's $99 out of pocket and I get the raw data, so as science progresses, I can re-run my data thru one of these apps 5 years from now and the SNPs they didn't know what to do with now might be informative in the future. Not trying to be an infomercial. I'm sure 23andMe competitors give similar info. And even with this info overload, there's still the big question of what does it mean/what do you do about it? But it seems that that's also true of Courtagen and so far, I haven't heard any of Dr T's patients say that he sits down and goes over this with you in any great detail.
     
    Having compared the reports, I'd go with 23andMe - unless you do not want to know about anything non-pandas. DS's 23andMe report points out that he's at risk for heart disease and macular degeneration and noise-induced hearing loss. Well, I already knew that based on my own father's health issues. But it's still hard to see it in black and white. So if you're not interested in having certain fears confirmed, then I can see sticking with a specialty test like Courtagen. But I think having my son's bigger picture will be helpful. Because DD has MTHFR mutation and we have success with methylation supplements, I've been giving both kids a Thorne multivitamin that has methylfolate in it instead of regular folic acid. Figured, hey - with my family history, the methylfolate won't hurt him, right? Well, this is bad for my son because his above mutations suggest he should steer clear of methyl donating supps like methylfolate. I'll now put him back on his regular mutlivitamin with regular folic acid and cynoB12 and maybe his mood will improve a bit. (I can hope). So for me, having all this raw data is empowering. I will inevitably screw it up along the way. But probably no worse than I would without the info. So if you're the dabbling type, my vote would be for the $99 23andme test over Courtagen, unless there's a specific reason Dr T is doing this that I'm not aware of. JMO
     
    edit - BTW - the Prometheus report you can run off of snpedia for $2 lets you see how you metabolize certain drugs, including ibuprofen, coffee, etc (you get the raw data froma co. like 23andMe then upload the raw date into Prometheus - not complicated)
    sample report: My link
  14. Like
    LNN got a reaction from TeamTyrion in Tourettes and Histamine...and methylation   
    Toaks - I don't have any experience with histadine but Walsh/Pfeiffer & co. advise using folinic acid, B12 (probably hydroxy form for overmethylators) and niacin to try to increase histamine. They advise avoiding Vitamin C, since C is an antihistamine. But in cold/flu season with a PANS kid, I'm still going to give C. Just starting my experiment of using these to see if the tic improves. Too soon to tell yet.
  15. Like
    LNN got a reaction from tj21 in If baseline is not tic free then is it TS?   
    I agree with Rowingmom. Despite what the Tourette's doctors would have you believe, there's a lot of evidence that "TS" is an immune or biomedical condition that can also be "cured" and isn't something you just have to live with. It matters less what label you use and more what lens you use. My son's tics were once directly related to his level of infection load (strep and/or lyme). They'd show up during a herx and go away as he cleared toxins. He's been infection-free for a year (off abx) and yet his tics can still return from a yeast infection or more likely, from a mold problem. He doesn't have TS. He has a problem with eliminating toxins.
     
    When we find a source of mold (not an infested basement - it can be something small like mildew in the bathroom or mold spores from house plants or a mildewed cardboard box in the basement) and we eliminate that source, his tics go away within days. That's not TS.
     
    I'd really consider triggers like mold, yeast, and methylation issues/nutritional assessment. They have been key issues beyond herxing/infection for my son. It's not always "just' Pandas that can become a tic trigger. Pandas may start the ball rolling, but then the body becomes far more sensitive to other issues. Read Scot Forgenson's "Biotoxin Pathway" article - great job of explaining the cascade of events. http://www.betterhealthguy.com/images/stories/PDF/PHA/2007_06.pdf
  16. Like
    LNN got a reaction from rowingmom in Antivirals   
    I started this post when my DD was dx'd with EBV. We did 2 cycles of artemisinin (6 weeks of 5 days/wk then a week break in between, then another 6 weeks, I think). Didn't help much. We then tried l-lysine 500mg 2x/day - viola. Within a week, she was off the couch. Within 3 weeks, she was ready to go back to school 6 hrs/day. After 6 weeks, she returned to school full time.
     
    I love l-lysine. It's my "go to" for canker sores and any onset of cold symptoms. It doesn't always work. Sometimes the cold comes on full bore anyway. But sometimes, it stops the cold in its tracks. I have a 50/50 track record against colds. it was awesome against EBV.
  17. Like
    LNN got a reaction from philamom in Went to see a naturopath, getting tested for Lyme   
    I too tried a few homeopathic remedies with no changes one way or the other and also struggle to wrap my science brain around. Yet I do respect those who feel it's been helpful and I have a lot of respect for the homeopath who shares a practice with our LLMD. I've never found any harm in trying it. (except for the $).
     
    I was in your same boat - exhausted the strep treatments (abx, steroids, T&A, Plasmapheresis and IVIG) and finally relented and tested for lyme (which yielded 5 positive/indeterminate bands). So we did lyme treatment and again hit a wall. Then DS tested positive for KPU/pyroluria. Treatment moved him forward until he hit another wall. Deep sigh, lots of swearing, lots more eye rolling from DH, then found mold sensitivity. Got vigilant about that (without spending tons of money thankfully). DS progressed again. Got glasses for convergence insufficiency and made academic gains. Methylation supplements finally got us that elusive final recovery.
     
    Gosh, i sound like a nut job with munchausens - or like maybe dx'ing issues was a hobby. Happy to say we seem to be "done" with our issues collection. But what I learned from all of it is that Pandas may actually be the final straw after a long period of teetering with other health issues. Or...it may be only the tip of the ice berg, making the body vulnerable to other insults. Chicken/egg question I suppose. But either way, having an autoimmune response to an infection and not being able to recovery entirely might mean there are other issues contributing. So it makes sense to test for other things.
     
    So if he's negative for lyme, then what? Oh, don't worry - there's a long list of other things to look for!
  18. Like
    LNN got a reaction from JuliaFaith in Went to see a naturopath, getting tested for Lyme   
    I too tried a few homeopathic remedies with no changes one way or the other and also struggle to wrap my science brain around. Yet I do respect those who feel it's been helpful and I have a lot of respect for the homeopath who shares a practice with our LLMD. I've never found any harm in trying it. (except for the $).
     
    I was in your same boat - exhausted the strep treatments (abx, steroids, T&A, Plasmapheresis and IVIG) and finally relented and tested for lyme (which yielded 5 positive/indeterminate bands). So we did lyme treatment and again hit a wall. Then DS tested positive for KPU/pyroluria. Treatment moved him forward until he hit another wall. Deep sigh, lots of swearing, lots more eye rolling from DH, then found mold sensitivity. Got vigilant about that (without spending tons of money thankfully). DS progressed again. Got glasses for convergence insufficiency and made academic gains. Methylation supplements finally got us that elusive final recovery.
     
    Gosh, i sound like a nut job with munchausens - or like maybe dx'ing issues was a hobby. Happy to say we seem to be "done" with our issues collection. But what I learned from all of it is that Pandas may actually be the final straw after a long period of teetering with other health issues. Or...it may be only the tip of the ice berg, making the body vulnerable to other insults. Chicken/egg question I suppose. But either way, having an autoimmune response to an infection and not being able to recovery entirely might mean there are other issues contributing. So it makes sense to test for other things.
     
    So if he's negative for lyme, then what? Oh, don't worry - there's a long list of other things to look for!
  19. Like
    LNN got a reaction from JenniferG in I need a Glutamine Education...   
    You can do a search of old posts and find a few discussions. We tried it once for each kid. Didn't see changes one way or the other, but everyone is different. You can also look into butyrate, which is supposed to help thicken the mucus lining of the intestines. We tried it last summer for leaky gut. Didn't see changes but again, it helps some people. The literature made it sound promising (tho it should be avoided by people with CBS mutations).
  20. Like
    LNN got a reaction from rowingmom in Went to see a naturopath, getting tested for Lyme   
    I too tried a few homeopathic remedies with no changes one way or the other and also struggle to wrap my science brain around. Yet I do respect those who feel it's been helpful and I have a lot of respect for the homeopath who shares a practice with our LLMD. I've never found any harm in trying it. (except for the $).
     
    I was in your same boat - exhausted the strep treatments (abx, steroids, T&A, Plasmapheresis and IVIG) and finally relented and tested for lyme (which yielded 5 positive/indeterminate bands). So we did lyme treatment and again hit a wall. Then DS tested positive for KPU/pyroluria. Treatment moved him forward until he hit another wall. Deep sigh, lots of swearing, lots more eye rolling from DH, then found mold sensitivity. Got vigilant about that (without spending tons of money thankfully). DS progressed again. Got glasses for convergence insufficiency and made academic gains. Methylation supplements finally got us that elusive final recovery.
     
    Gosh, i sound like a nut job with munchausens - or like maybe dx'ing issues was a hobby. Happy to say we seem to be "done" with our issues collection. But what I learned from all of it is that Pandas may actually be the final straw after a long period of teetering with other health issues. Or...it may be only the tip of the ice berg, making the body vulnerable to other insults. Chicken/egg question I suppose. But either way, having an autoimmune response to an infection and not being able to recovery entirely might mean there are other issues contributing. So it makes sense to test for other things.
     
    So if he's negative for lyme, then what? Oh, don't worry - there's a long list of other things to look for!
  21. Like
    LNN got a reaction from Mommy2MCL in Am I foolish to think that my daughter is going to get better?   
    Plenty of kids have battled Pandas/Pans and moved on to be just fine. We spent 5 years taking steps forward and backward but my son is back to enjoying a very "normal" childhood. He's been off antibiotics for over a year. He was sick for a year before a doctor would support us with long-term antibiotics, We then treated Pandas with plasmapheresis and then IVIG. We went on to find undiagnosed lyme that was likely the infection that started the whole thing. Then we found pyroluria - a genetic zinc/B6 deficiency that was holding him back. Then a mold sensitivity that was getting in the way. So it was a lot like being stuck in a video game, with new, harder challenges at every level. But we did finally finish the game.
     
    It was a really hard period in our lives. I think it was hardest on my daughter, who's been left feeling "less loved" because she got less attention and therefore short-changed for being health(ier). It keeps me mindful that I need to give her my full attention when she needs it now. But overall, my son came through it all as a better person than he probably would have without the experiences. My DH and I are better parents, less pressured to meet false expectations or get caught up in unimportant drama. I think we've learned to savor small moments and we all really appreciate what we have, taking less for granted. We take pride in not being normal, in realizing no one is normal and everyone has issues. it's just that some people waste time trying to hide their problems.
     
    I live on a cul-de-sac with 18 houses. On our street, we have three kids with OCD, two with autoimmune diseases (one of whom needs to be home schooled because an infection could destroy his kidneys). One family imploded when the wife had an affair with an old flame. One family did the same when the dad left to be with someone he'd known for 3 months. One teen is "orphaned" by parents who are never around. One mom is now a breast cancer survivor. And these are only the neighbors I talk with. The other half probably have similar struggles that I just don't know about. I consider my family among the lucky ones. We pulled together, we're affectionate, we're grounded by knowing what matters in life. I think Pandas helped us focus - it could've been so easy to get swept up in superficial things had we not been forced to face constant reminders of what really matters. Had the battle ended too soon, I'm not sure the lessons and gifts would've taken root.
     
    I'm absolutely thankful we got through it all and no longer live the nightmare. But I don't regret our experiences. I came across this blog today - maybe it will help
    Sometimes life closes doors because it’s time to move forward. And that’s a good thing because we often won’t move unless circumstances force us to. When times are tough, remind yourself that no pain comes without a purpose. Move on from what hurt you, but never forget what it taught you. Just because you’re struggling doesn’t mean you’re failing....(read the whole thing here)
    http://www.lifebuzz.com/8-things/#!LfOA7
  22. Like
    LNN got a reaction from ibcdbwc in Am I foolish to think that my daughter is going to get better?   
    Plenty of kids have battled Pandas/Pans and moved on to be just fine. We spent 5 years taking steps forward and backward but my son is back to enjoying a very "normal" childhood. He's been off antibiotics for over a year. He was sick for a year before a doctor would support us with long-term antibiotics, We then treated Pandas with plasmapheresis and then IVIG. We went on to find undiagnosed lyme that was likely the infection that started the whole thing. Then we found pyroluria - a genetic zinc/B6 deficiency that was holding him back. Then a mold sensitivity that was getting in the way. So it was a lot like being stuck in a video game, with new, harder challenges at every level. But we did finally finish the game.
     
    It was a really hard period in our lives. I think it was hardest on my daughter, who's been left feeling "less loved" because she got less attention and therefore short-changed for being health(ier). It keeps me mindful that I need to give her my full attention when she needs it now. But overall, my son came through it all as a better person than he probably would have without the experiences. My DH and I are better parents, less pressured to meet false expectations or get caught up in unimportant drama. I think we've learned to savor small moments and we all really appreciate what we have, taking less for granted. We take pride in not being normal, in realizing no one is normal and everyone has issues. it's just that some people waste time trying to hide their problems.
     
    I live on a cul-de-sac with 18 houses. On our street, we have three kids with OCD, two with autoimmune diseases (one of whom needs to be home schooled because an infection could destroy his kidneys). One family imploded when the wife had an affair with an old flame. One family did the same when the dad left to be with someone he'd known for 3 months. One teen is "orphaned" by parents who are never around. One mom is now a breast cancer survivor. And these are only the neighbors I talk with. The other half probably have similar struggles that I just don't know about. I consider my family among the lucky ones. We pulled together, we're affectionate, we're grounded by knowing what matters in life. I think Pandas helped us focus - it could've been so easy to get swept up in superficial things had we not been forced to face constant reminders of what really matters. Had the battle ended too soon, I'm not sure the lessons and gifts would've taken root.
     
    I'm absolutely thankful we got through it all and no longer live the nightmare. But I don't regret our experiences. I came across this blog today - maybe it will help
    Sometimes life closes doors because it’s time to move forward. And that’s a good thing because we often won’t move unless circumstances force us to. When times are tough, remind yourself that no pain comes without a purpose. Move on from what hurt you, but never forget what it taught you. Just because you’re struggling doesn’t mean you’re failing....(read the whole thing here)
    http://www.lifebuzz.com/8-things/#!LfOA7
  23. Like
    LNN got a reaction from MissionMama in Am I foolish to think that my daughter is going to get better?   
    Plenty of kids have battled Pandas/Pans and moved on to be just fine. We spent 5 years taking steps forward and backward but my son is back to enjoying a very "normal" childhood. He's been off antibiotics for over a year. He was sick for a year before a doctor would support us with long-term antibiotics, We then treated Pandas with plasmapheresis and then IVIG. We went on to find undiagnosed lyme that was likely the infection that started the whole thing. Then we found pyroluria - a genetic zinc/B6 deficiency that was holding him back. Then a mold sensitivity that was getting in the way. So it was a lot like being stuck in a video game, with new, harder challenges at every level. But we did finally finish the game.
     
    It was a really hard period in our lives. I think it was hardest on my daughter, who's been left feeling "less loved" because she got less attention and therefore short-changed for being health(ier). It keeps me mindful that I need to give her my full attention when she needs it now. But overall, my son came through it all as a better person than he probably would have without the experiences. My DH and I are better parents, less pressured to meet false expectations or get caught up in unimportant drama. I think we've learned to savor small moments and we all really appreciate what we have, taking less for granted. We take pride in not being normal, in realizing no one is normal and everyone has issues. it's just that some people waste time trying to hide their problems.
     
    I live on a cul-de-sac with 18 houses. On our street, we have three kids with OCD, two with autoimmune diseases (one of whom needs to be home schooled because an infection could destroy his kidneys). One family imploded when the wife had an affair with an old flame. One family did the same when the dad left to be with someone he'd known for 3 months. One teen is "orphaned" by parents who are never around. One mom is now a breast cancer survivor. And these are only the neighbors I talk with. The other half probably have similar struggles that I just don't know about. I consider my family among the lucky ones. We pulled together, we're affectionate, we're grounded by knowing what matters in life. I think Pandas helped us focus - it could've been so easy to get swept up in superficial things had we not been forced to face constant reminders of what really matters. Had the battle ended too soon, I'm not sure the lessons and gifts would've taken root.
     
    I'm absolutely thankful we got through it all and no longer live the nightmare. But I don't regret our experiences. I came across this blog today - maybe it will help
    Sometimes life closes doors because it’s time to move forward. And that’s a good thing because we often won’t move unless circumstances force us to. When times are tough, remind yourself that no pain comes without a purpose. Move on from what hurt you, but never forget what it taught you. Just because you’re struggling doesn’t mean you’re failing....(read the whole thing here)
    http://www.lifebuzz.com/8-things/#!LfOA7
  24. Like
    LNN got a reaction from SSS in Am I foolish to think that my daughter is going to get better?   
    Plenty of kids have battled Pandas/Pans and moved on to be just fine. We spent 5 years taking steps forward and backward but my son is back to enjoying a very "normal" childhood. He's been off antibiotics for over a year. He was sick for a year before a doctor would support us with long-term antibiotics, We then treated Pandas with plasmapheresis and then IVIG. We went on to find undiagnosed lyme that was likely the infection that started the whole thing. Then we found pyroluria - a genetic zinc/B6 deficiency that was holding him back. Then a mold sensitivity that was getting in the way. So it was a lot like being stuck in a video game, with new, harder challenges at every level. But we did finally finish the game.
     
    It was a really hard period in our lives. I think it was hardest on my daughter, who's been left feeling "less loved" because she got less attention and therefore short-changed for being health(ier). It keeps me mindful that I need to give her my full attention when she needs it now. But overall, my son came through it all as a better person than he probably would have without the experiences. My DH and I are better parents, less pressured to meet false expectations or get caught up in unimportant drama. I think we've learned to savor small moments and we all really appreciate what we have, taking less for granted. We take pride in not being normal, in realizing no one is normal and everyone has issues. it's just that some people waste time trying to hide their problems.
     
    I live on a cul-de-sac with 18 houses. On our street, we have three kids with OCD, two with autoimmune diseases (one of whom needs to be home schooled because an infection could destroy his kidneys). One family imploded when the wife had an affair with an old flame. One family did the same when the dad left to be with someone he'd known for 3 months. One teen is "orphaned" by parents who are never around. One mom is now a breast cancer survivor. And these are only the neighbors I talk with. The other half probably have similar struggles that I just don't know about. I consider my family among the lucky ones. We pulled together, we're affectionate, we're grounded by knowing what matters in life. I think Pandas helped us focus - it could've been so easy to get swept up in superficial things had we not been forced to face constant reminders of what really matters. Had the battle ended too soon, I'm not sure the lessons and gifts would've taken root.
     
    I'm absolutely thankful we got through it all and no longer live the nightmare. But I don't regret our experiences. I came across this blog today - maybe it will help
    Sometimes life closes doors because it’s time to move forward. And that’s a good thing because we often won’t move unless circumstances force us to. When times are tough, remind yourself that no pain comes without a purpose. Move on from what hurt you, but never forget what it taught you. Just because you’re struggling doesn’t mean you’re failing....(read the whole thing here)
    http://www.lifebuzz.com/8-things/#!LfOA7
  25. Like
    LNN got a reaction from MaryAW in Am I foolish to think that my daughter is going to get better?   
    Plenty of kids have battled Pandas/Pans and moved on to be just fine. We spent 5 years taking steps forward and backward but my son is back to enjoying a very "normal" childhood. He's been off antibiotics for over a year. He was sick for a year before a doctor would support us with long-term antibiotics, We then treated Pandas with plasmapheresis and then IVIG. We went on to find undiagnosed lyme that was likely the infection that started the whole thing. Then we found pyroluria - a genetic zinc/B6 deficiency that was holding him back. Then a mold sensitivity that was getting in the way. So it was a lot like being stuck in a video game, with new, harder challenges at every level. But we did finally finish the game.
     
    It was a really hard period in our lives. I think it was hardest on my daughter, who's been left feeling "less loved" because she got less attention and therefore short-changed for being health(ier). It keeps me mindful that I need to give her my full attention when she needs it now. But overall, my son came through it all as a better person than he probably would have without the experiences. My DH and I are better parents, less pressured to meet false expectations or get caught up in unimportant drama. I think we've learned to savor small moments and we all really appreciate what we have, taking less for granted. We take pride in not being normal, in realizing no one is normal and everyone has issues. it's just that some people waste time trying to hide their problems.
     
    I live on a cul-de-sac with 18 houses. On our street, we have three kids with OCD, two with autoimmune diseases (one of whom needs to be home schooled because an infection could destroy his kidneys). One family imploded when the wife had an affair with an old flame. One family did the same when the dad left to be with someone he'd known for 3 months. One teen is "orphaned" by parents who are never around. One mom is now a breast cancer survivor. And these are only the neighbors I talk with. The other half probably have similar struggles that I just don't know about. I consider my family among the lucky ones. We pulled together, we're affectionate, we're grounded by knowing what matters in life. I think Pandas helped us focus - it could've been so easy to get swept up in superficial things had we not been forced to face constant reminders of what really matters. Had the battle ended too soon, I'm not sure the lessons and gifts would've taken root.
     
    I'm absolutely thankful we got through it all and no longer live the nightmare. But I don't regret our experiences. I came across this blog today - maybe it will help
    Sometimes life closes doors because it’s time to move forward. And that’s a good thing because we often won’t move unless circumstances force us to. When times are tough, remind yourself that no pain comes without a purpose. Move on from what hurt you, but never forget what it taught you. Just because you’re struggling doesn’t mean you’re failing....(read the whole thing here)
    http://www.lifebuzz.com/8-things/#!LfOA7
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