otksmama reacted to Dedee in Conference
It was an awesome conference! Had some great conversations with some of the researchers and speakers. It was also a very emotional and bonding experience. My husband got to go with me and I think one of the best things he brought home was a validation that our daughter does indeed have lyme. There was never any doubt from me but I think he has always held back some reservations until after the Lyme presentation. Not anymore. It was good for him to hear some of the things he has always heard from me also come from other Mom's and from the speakers. I am so glad we went.
otksmama reacted to pr40 in better!
there are not enough posts about improvement. here is one. Today we are much, much better than we were a year ago. We are not out of the woods yet and life is still difficult but it does not seem hopeless as it used to.
here is what we did:
1) abx, for a year now. Augmentin and Zitrhomax
2) gluten free, casin free, sugar free, and then also night-shades free -- not as hard as you'd think if you have basic cooking skills and time
3) supplements -- many anti-inflamatories, magnesium, zinc, vitamin D. we also expereimented with methylation supplements but I am not sure what worked.
4) behavior -- there were times when nothing worked. when they are approachable rewards do motivate them as do frequent time outs, time alones, which help them calm down and regroup.
5) total dedication to them by both parents. we are older didn't mind much not being able to do anything other than high maintenance for the kids.
6) reading this forum. it calms me down and, of course, this is where I find my best advice.
thank you all
otksmama reacted to Dedee in Methylation: to test or not to test?
You have gotten great advice already. I can only add my experience. We originally got the MTHFR test and tried to treat it alone. We had about a one month honeymoon period and then things regressed to where they were originally. After that we did the 23andme. It has taken much research on my part to learn about each individual mutation. The ones I thought would be the problem for my daughter were actually not the ones that have caused the major issues. I have learned more from some additional urine and hair testing. I think we are finally on our way to healing. I am hesitant to say this in the event that things should turn bad again. It takes more than just testing. It takes research, and trial and error. I was on the edge of putting my daughter on an SSRI. Still haven't completely ruled it out. But hopefully if things continue as they are we will see some futher improvement. Methylation can be very helpful but just keep in mind that it's a journey not a destination. Things are ever evolving in this world and it can be frustrating at times. Be patient. Best of luck.
otksmama reacted to Mayzoo in Methylation: to test or not to test?
The urine tests will give you a picture of what is going on absorption wise in this moment in time only. The 23andme test gives you tools for a life-long plan. We did both so I could see how her absorption was on her current regimen, and I wanted to know for the future what to look out for as well.
For us, my kiddo has a lot of other dxs going on as well, so I wanted to maybe get one step ahead of a possible serious issue if I could. Too many other dxs snuck up on me since the symptoms to those were also part of what she already had been diagnosed with. With the 23andme, I had a tool to look up all the symptoms for what she is at risk for so I can better identify a problem early on rather than later.
otksmama reacted to LNN in Methylation: to test or not to test?
You might find this thread helpful on how to use genetic results to improve methylation and it gives some good reading resources http://www.latitudes.org/forums/index.php?showtopic=3928&page=2 (post #18)
I wouldn't just test MTHFR - I'd do 23andMe and look at all 30+ genes that play a role in methylation. You can also search the archives for a discussion this past spring about privacy and insurance concerns, just so you make the decision to test with that in mind.
When I first learned about MTHFR, 23andMe was in the $500 range, so we only tested MTHFR thru quest and had insurance cover it. I then addressed that one issue and only did 23andMe about 6 months later. But now that 23andMe is only $99, I'd have done the whole thing at once. There were issues for one of my kids that had nothing to do with MTHFR and yet finding the right balance of supplements have made a world of difference. For my other child, treating MTHFR gave us a simial night/day improvement as Peglem, tho instead of fight/flight, we saw a "bipolar" child become Steady Freddie within two weeks.
Two caveats - methylation has made my kids far more stable all the time. But it is not a "cure" for Pandas. It's been the thing that's made neurotransmitter levels balanced. But toss an infection into the mix and ask the body to divert resources to fighting that infection and things can still get out of whack - just not as severely or for as long. Their bodies also seem better able to ward of infections before they blow up into episodes.
Caveat 2 - you can see improvements quickly - in a matter of days to weeks - once you hit upon the right doses and balance of things. Finding that right balance is not immediate and it's not universal. One body might need 50micrograms of something while another needs 50 milligrams of that thing. When you find the sweet spot, it's easy to feel it. But finding it takes some trial and error.
I have to disagree with Pr40 on one comment tho. I don't think you can easily - or even safely - get the same answers by trying this or that, without genetic testing. One personal example is the supplement NAC. For some people, it's a really great supplement - can help with OCD and trichlomania and act as a presursor to glutathione - the master detox agent. But it made my DD flip out and I had no idea why. I then took it for a cough (it thins mucus) and it worked great. But after 2 months, I was depressed and gaining weight and quite by accident, had my liver enzymes checked as part of an annual physical and found my liver enzymes were a mess. I stopped the NAC, had another blood test a month later, and my liver enzyme were back to normal and my depression had lifted (the weight was a little slower to leave, but it too resolved soon after). Had I not coincidentally had the blood work, I could've damaged my liver by using a supplement I'm genetically not able to "methylate" (DD and I have a CBS genetic mutation that hinders our ability to handle the sulfur in NAC). After studying (and studying some more) our specific results, turns out there were other supplements we were taking that were not well suited and there were others that we added after testing that ended up helping a lot. So in my case, I did gain a lot from what I learned thru testing. No, science isn't fully there in the implications, etc. but even in its infancy, the things I've learned about methylation and my family's unique roadblocks have been literally life changing for the better.
otksmama reacted to LNN in Healing the Gut - Homemade Probiotics, Candida, Poopology 101
I came across this site today and thought it was timely, given recent discussions on probiotics, yeast and gut health
There are tons of blogs here on diet, treating candida, making your own probiotics, how to interpret gut health from studying stools...lots of good stuff. The one thing I caution is that some of these posts are a few years old - long before 23andMe could tell anyone whether certain things were "good" or "bad" for them. One post raves about epsom salt baths and how they are a "must" for everyone. But if you have a CBS mutation, it's actually more of a "must avoid" as my DD can tell you, after emerging from baths I insisted would be helpful, her skin red and itchy from an OD of sulfur (oh, their therapists will have so much to talk about when they're grown).
But in general, I found this to be a pretty realistic place - with more than one blogger acknowledging that not everything listed as a recommendation would be practical for every person. Worth checking out.
otksmama reacted to MomWithOCDSon in How fast do OCD and other PANS symptoms have to come on to be consider
The "classic" presentation is "overnight," i.e., very quickly. As noted by Dr. Susan Swedo, the lead research on PANDAS with the NIMH, however, the temporal relationship between infection/exposure and appearance of behaviors tends to change with the number of infections/exposures, and the maturation/development of the kid may play into how quickly behavioral changes become noticeable since, especially as they age, they tend to try and hide some of their fears and anxieties. So, bottom line, it varies.
Many of us (myself included) look back now and realize we actually "missed" that first, "overnight" exacerbation because our children were too young, didn't have the verbal skills to express their discomfort and/or fears. Additionally, in our case, my son was classically asymptomatic for strep (no sore throat, no fever), so we knew he'd been exposed, but we didn't know he'd "caught" anything. In the end the exacerbation event that sent him over the edge and put us . . . finally . . . on the PANDAS path came some 8 or 9 years AFTER what was likely his first PANDAS episode.
Now, Dr. Swedo has adjusted the PANDAS criteria to provide for a significant increase in certain behaviors (OCD, anxiety, tics, etc.) over a "short" period of time, rather than just an "overnight" onset of these behaviors.
So, long way of saying, I wouldn't get too hung up on an "overnight" display of symptoms, especially in a child your son's age, since this is likely not his first PANDAS episode, though it may be the first that's been properly identified. I'm glad your doc has done a script for abx, and I'll be interested to hear how your DS responds. Is he only taking the Abilify in addition, or is he still taking the Zoloft, also? Dr. Tanya Murphy has authored a paper on SSRIs and PANDAS kids, the upshot of which is that, for whatever reason, PANDAS kids can be very sensitive to SSRIs and, many times, an exceptionally low dose is helpful while a "standard" dose is too much and actually activates (increases the OCD/anxiety) rather than quells it. That might be something to put into the "hopper" as you move forward along this trail. I encourage you to go through some of the pinned, explanatory threads at the top of this forum since there are a number of resources, research papers, etc. there that may be helpful to your family and perhaps your doctor, too.
As for a pediatric neurologist, I would only go to one who is, in fact, not only aware of PANDAS but accepts it as a viable diagnosis; unfortunately, there remain way too many naysayers out there who can waste your time and money, and leave you in the lurch, as well. Among the pinned threads on this forum is one which identifies "Doctors who have helped us," and you might find the name of a local neurologist there. You can also check PANDASNetwork.org for sources, and/or Google "PANDAS Doctors," and you'll find a link authored by Beth Maloney (author of "Saving Sammy," a biography of her son's PANDAS journey) with a state-organized list of PANDAS-savvy practitioners.
There is a world of information here on the forum, and perhaps some other California families will pipe in and have a doctor lead to share. Take care, and welcome to the forum!
otksmama reacted to GraceUnderPressure in Importance of diet
One of my kids was texture aversive on top of gagging on anything vegetable-green. It took me years of being firm & rewarding even tiny steps forward so that he now, at age 10, asks for seconds on green beans & is up to a serving spoon of broccoli or spinach (his most difficult veggies).
It won't happen overnight & you will frequently feel like it is never going to happen, but persevere! It is very hard when they are too little to understand - thankfully my dh had bought a dvd of old Popeye shorts that my kids enjoyed watching which helped me convey to them that spinach helps make our bodies stronger which decreased their resistance. I let my ds start with ridiculously small amounts so that he felt some control over the process. With the little ones, hiding pureed veggies in their food might be the best way to get those nutrients in there. We started with finding healthier versions of their favorite foods. It wasn't much of an improvement, but it was still an improvement & got us started. Another tactic that worked well for us was mixing just a little bit of the healthy stuff in with the old food, & gradually increasing the amount of the healthy food while decreasing the amount of the old stuff, until we were used to the taste and didn't mind it anymore.
I remember being totally overwhelmed when our nutritionist was explaining the foods we needed to eliminate & was so grateful when he told me it was okay to start by decreasing the amounts and just try to keep working my way toward that eventual goal. We needed that time for both our bodies & our minds to adapt! The essential point is - don't worry about the size of your steps or even how long it takes to do it, just keep working towards taking them!
otksmama reacted to 3bmom in Importance of diet
Our Dr will not treat your child unless you follow diet since it is a major cause of inflammation. Our DS had severe OCD and lost 30 lbs and diet was before any prescriptions. His allergy antibodies were at life threatening levels and we had no idea. He has been doing immunology for 30 years and closely looks at allergy markers. Besides dairy and gluten he has found rice to inflame too. No wonder since the news last week shows high levels of arsenic in rice. We followed the diet and improved. When my son stared the Paleo/ caveman diet because of his college aged brother all allergy markers dropped to normal range. His Dr now puts all kids in his practice on this diet except for 2 slices of very white bread (less allergenic) once a day. This helps with lunch at school. The diet also eliminates GMO's which are highly prevalent in gluten free food. For info watch Robyn O'Bryan on utube or watch the video "Genetic roulette".
Our bodies do not recognize the DNA of roundup in our food so the immune system sends out the soldiers to attack. The more soldiers the more likely to have friendly fire hence autoimmune.
Clues to what your children are allergic too is what they crave. The immunes response to an allergen is similar to a hit of morphine giving a temporary calming effect... Hence our love for ice cream when stressed. Pizza has dairy,wheat, yeast and nitrates if you add pepperoni. No wonder its our kids favorite food.
It is a transition to change diet and for us it took awhile. You have to forgive yourself along the way and remember every little change helps take a layer of inflammation of the immune system giving it a chance to heal. Once your child is off the food they no longer enjoy it. He will eat pizza at a bday party to fit in but now feels physically ill and won't ask for it at home. We make great smoothies in the morning and he still likes chips. I just make sure they are organic. I would say we are 85% "good" and still our antibodies dropped along with behaviors.
otksmama reacted to LNN in Sleep habits
I am not a good one to be giving advice - my kids still have sleep issues and they're 8 and 10. I always chose sleep over principal. So DH and I aften gave in and slept with the kids instead of being woken up repeatedly. If I fall asleep for more than 15 min and then get woken up, I'm up for hours. So I personally couldn't fight this battle while also being expected to be compassiontate during the daylight hours. The good news is that as the 10 yr old has gotten older, he has learned to sleep alone pretty easily now and only rarely will come in an hour after I thought he was asleep and tell me intrusive thoughts are keeping him awake. The 8 yr old is also getting better, but not quite as successful.
So sleeping alone is in the same category for me as thumb sucking and pullups. I doubt any kid will walk down the aisle for his/her wedding still sucking a thumb or wearing a pullup or sleeping with a parent. So when PANS was on the front burner, where everyone slept was a whole lot less important than the fact that we all got enough sleep to be kind to one another all the other hours of the day.
otksmama reacted to qannie47 in What if abx don't work?
Otksma, just met with Dr. K. First, he said that after IVIG, it would be unusual for other illnesses to trip of Pandas in a major way, although, to be safe, he would still use higher dose of abx when he got sick with anything signifigant. Two, he does not actually feel that abx is enough to prevent strep, and if he gets it and if we are not vigilent, it could indeed trip off a bigger Pandas episode....so the trick is to catch it asap. Third, the idea of abx is used not only to ward off infections, but abx also is an anti-inflammatory as well so it could be considered a part of the healing process. Three, gut issues...my ds takes a probiotic daily and will continue, so I am not worried about gut issues (not at the same time of day as abx). Remember, the bigger picture of the IVIG is to MATURE up a glitch immune system...that takes time, hence the 1 to 2 years of antibiotics and vigilance for future infections...Fourth, these days I am happy if I remember to close the cabinet doors in my kitchen, but I will try and remember and reference some material for you...The collaborative study that I talked about was from the NIMH website. Go there, it is a study done on I believe 50 kids who were treated within the first year of 1st episode with IVIG and tonsillectomy...I am getting my ds's yanked out in December....he can eat all the ice cream he wants...
otksmama reacted to MomWithOCDSon in Milestones
As some of you other "old timers" know, we've been here since approximately October 2010, when we first discovered PANDAS played a role in our DS's long, hard fight against OCD. We will be forever indebted to everyone here and to the whole ACN family for helping us find our way through.
When we began, DS was 12, completely non-functioning, curled up in the fetal position on the floor of his room, unable to do even the most mundane tasks, let alone actively participate in school or the "normal" life of a pre-teen. Four years later, two of which included antibiotics, he's doing so well and making us so proud, I just needed to brag for a minute and hope that his progress might inspire some other kids/families that are looking for their own light at the end of the PANDAS tunnel.
Over the summer, DS began learning to drive, he worked his first part-time job, began his own consulting business, and attended a week-long media arts camp at a well-respected media arts college. He also did some college research and got very excited his future prospects.
School started last week: his junior high school year. He's enrolled in AP and honors classes, participating in the school's robotics competition team, and digging his challenging course load thus far. The "ice cream on top" came yesterday when he had his first date with a girl in his class! Honestly, I wasn't sure he would ever get to the point where he would be comfortable with dating, let alone the first week of a new school year!
I don't intend to mislead anyone. Plagued by OCD behaviors since the age of 6, he still contends with some of that; he's a bit of a Mr. Clean as well as a perfectionist when it comes to his school work. But rather than it bossing him around these days, he truly seems to be in charge of it, unwilling to let it get in his way either academically or socially.
So things just seem to get better and better on our end (knock on wood), so I feel certain they can for most of us. I realize a four-year path may seem unthinkably long and protracted for some of you, and I know some have been able to walk a quicker path to overall physical and mental health than we have. But quite honestly, I'm so proud and happy in the present, and thinking of his future, that I find I don't regret those years. They've become a part of who he is and who we are as a family, and I know we're all stronger and more compassionate for it.
Thanks again to you all, and much light and love to everyone and their kids!
otksmama reacted to mdmom in new and hanging on by a thread
I would like to add that some children with PANDAS/PANS also have immune deficiencies and therefore, they do not produce enough antibodies to properly fight infection. My DS16 also has a primary immune deficiency. In our search to find help for my son (who was 13 and a chronic case by then), we ended up at a Lyme-literate-medical-doctor (LLMD) who clinically diagnosed my son with multiple infections (some tick-borne). He was negative on all the infection panels except for strep and mycoplasma. But I trusted our doc and she aggressively treated him for Lyme, Babesia, Bartonella, Mycoplasma, Strep, Candida, viruses. Finally, after 2 years of aggressive treatment with antibiotics, antifungals, antivirals, my son started receiving monthly high-dose IVIG (HD-IVIG). After 4 treatments, the doctor tested for infections again (he had been tested multiple times and always came up mostly negative), and he tested positive for all of the above infections. We had waited a sufficient amount of time between IVIG treatments so that the donor IG did not skew his test results. The IVIG helped his immune system actively fight infection. Antibiotics only do part of the work in fighting infection; one's immune system is supposed to do the rest of the work.
Whether you are dealing with Lyme and co-infections or not. LLMDs are very good at diagnosing and treating weird infections that may not be showing up on blood work.
I've been around this forum quite awhile. My son is a chronic case, so don't be discouraged by those of us that have been treating for years. He was symptomatic during his toddler years and wasn't diagnosed until age 13. The fact that you are seeking help so early in the game for your son is wonderful.
One thing that many agree on is that you must address underlying infections if you want to see lasting, healing results. IVIG is not a quick-fix for all - and it's costly, especially considering that most insurance carriers will not pay for IVIG for a PANDAS/PANS diagnosis.
My advice: slow and steady wins the race. Like others who have posted on this topic, we have addressed many, many layers of issues including the following:
diet - we are 100% gluten/dairy free and as much organic as possible, low sugar diet
gut health - we use high doses of probiotics (it's estimated that 70%+ of your immune system is in the gut)
inflammation - we use circumin (and ibuprofen when there's a flare)
hydration - drink lots of good-quality water
hidden infections in sinuses - we use antifungal and antibiotic nasal sprays
infections - long-term antibiotics
yeast - antifungals to keep yeast at bay
immune support - low-dose naltrexone
Best of luck to you. This forum will be a source of comfort and good information.
otksmama reacted to LNN in new and hanging on by a thread
I'm glad to hear Dr T ordered so many labs. The band 41 you see on the lyme test isn't unique to lyme. It means your son was exposed to and developed antibodies against some bacteria that has a flagella - a tail used for motility. Lyme spirochettes have a flagella, but so does H Pylori, syphillis and others. I don't want to side track your post onto a lyme discussion but I do recommend reading the articles in this thread http://www.latitudes.org/forums/index.php?showtopic=10804 because the test Dr T orders is not a good way to rule lyme in or out. My son was tested by this test (different Pandas doctor) and was completely negative. Six months later, after a bad one-time IVIG experience, we re-tested for lyme using Igenex lab and my son had 5 bands light up - 4 that were never tested using the standard lyme western blot from Quest. Not dwelling on lyme - just don't want you to dismiss it entirely. By all means, pursue/treat any other infections that turn up. But if you can't hold remission, keep lyme in mind. My son had positive strep a number of times and he definitely had/has Pandas, but lyme was underneath it all, keeping him from getting permanently well.
In theory, your pedi is right - Pandas symptoms do resolve - but only if you eradicate the triggering infection. So if you have mycoplasma or lyme or some other chronic infection, ten days of abx isn't going to kill the infection and it will remain, keeping the pot stirred indefinitely until the body - usually with some major help from longer term antibiotics and maybe other medical interventions - clears the invader. To dismiss Pandas casually, as if it will resolve like a common cold, is naive.
If your son's trigger is viral, there are a number of anti-virals you can use - some prescritption, some herbal, some OTC supplements like l-lysine. The recognition that viral triggers and bacterial triggers beyond strep can bring on an episode is the reason the disease has been re-named PANS, taking the focus off of strep as the sole culprit.
Your question on how you know if something is working or if things are just resolving on their own - for our kids, many of whom have under-performing immune systems - they don't just resolve on their own. They resolve once you get rid of the infection. So when you see improvements, it's generally the treatment that's working, helping the body recover. You should also be aware of the herxheimer reaction. Sometimes, if the bacteria you're fighting releases toxins as it dies - e.g. with strains of strep that produce scarlett fever, yeast, lyme et al - the die off can make it seem that your child is getting worse, not better. People here generalize the term 'herx' to discuss any general "worse before better" reaction. Sometimes getting worse doesn't mean you're on the wrong path. It can mean you're killing things faster than the body can handle, de-tox wise. So slowing down your rate of attack or supporting with supplements can help lessen the reaction. Using anti-inflammatories is also extremely helpful and regular dosing of ibuprofen or a period of prednisone can sometimes be amazing. (for whatever reason, ibuprofen is remarkably more effective than any other NSAID for our kids).
Regarding the methylation issue - my son underwent a number of Pandas treatments - long term abx, T&A, prednisone tapers, plasmapheresis, IVIG, lyme treatment using combintations of abx - and he would get better but not completely better. So each time, we had to dig deeper. After his lyme diagnosis, we worked with an LLMD (lyme literate MD) who looked at vitamin deficiencies. We found a genetically caused zinc/B6 deficiency and when we started supplementing with zinc/B6 it was like someone turned on a light switch. My son made huge gains. We then went on to look at other genetic issues - such as the ability to use Vitamin D effectively, the ability to degrade neurotransmitters at the proper rate, etc. My daughter, who could've easily gotten a bipolar dx from any pyschiatrist, had a genetic anomaly on a gene known as MTHFR which reduced her ability to use folate (vitamin B9) which in turn gets turned into SAMe, serotonin and dopamine. When we started supplementing with a special form of folate (methylfolate) in the right dose for her, her bipolar moods went away. So we then went on to test the whole family using a genetic lab called 23andMe and I've been able to tailor supplements that have helped my kids regulate their moods in a way that's amazed those who knew them in the bad old days. It's possible that pre-existing methylation problems pre-disposed them to neuropsych symptoms when the body became overwhelmed with infection and this is what weakened the blood-brain barrier and enabled the autoimmune Pand response. So by working around their genetic hurdles and supportuing their guts with the right balance of probiotics and diet, I'm trying to fortify the fort and make relapse less likely and less damaging if it does happen.
Sorry if I've tossed too much out at one time. Not trying to throw the kitchen sink at you. Sometimes, once you kill the infection, kids return to baseline and can maintain a good place. My kids had other things that kept them from being like those kids who bounced back quickly from an episode. So keep focused on the infection for now. But don't get discouraged if your son isn't an immediate success story. Know that even if you have to dig deeper and become an expert on things you never dreamt you'd have to know, you can find answers and get your son well.
oh - re: the behavioral optometrist - my kids both have convergence insufficiency - a type of "lazy eye" that gave them reading, coordination and academic problems. It isn't directly related to their Pandas issues. They wear bifocals and do eye exercises to reduce the CI. I mentioned it in my first post because the optometrist has worked with my daughter for the past year but has only sporadically seen my son, as we couldn't afford vision therapy for both at the same time. So she was really struck by the contrast between the boy she met last summer and the boy she saw yesterday. The story was meant to highlight the dramatic gains my son has achieved in the past year.