MountainMom reacted to bobh in Participate in a Pilot Study of Genetic Patterns in PANS/PANDAS
I committed to feed results back as they trickle in, so here is one such result: For MTHFR A1298C (rs1801131), there were 70 sets of data: - 5 were homo for the risk allele (i.e., +/+) - 23 were heterzygous (+/-) - 42 of them did not have the risk allele at all (-/-) For MTHFR C677T (rs1801133), there were 71 sets of data: - 5 were homo for the risk allele (i.e., +/+) - 26 were heterzygous (+/-) - 40 of them did not have the risk allele at all (-/-) The first result above is a lower count of risk allele than the general population, and the 2nd is a little higher - but neither statistically significantly so, according to how we setup this analysis. Particularly together, the two of them are pretty much like the general population in terms of number of the risk alleles. I hope this result is not upsetting for any that feel these MTHFR SNPs are a significant player in PANS. Because it doesn't correlate wtih PANS doesn't mean that it isn't something of significance for your particular child. So far, we have only tabulated results like the above (how individual SNPs for these PANS kids fare against the general population). We are still wanting to look at other patterns of many SNPs together among the participants, which might show something statistically significant even if an individual SNP doesn't. It can also be the case that for a given individual, a certain combination of SNPs, including these MTHFR ones, work in a way together to affect the disorder. It is really hard to do either of those kinds of analysis with our genetic data though, so we'll see how our investigations of that works out.
MountainMom reacted to bobh in Participate in a Pilot Study of Genetic Patterns in PANS/PANDAS
Note: This has been approved for posting by Forum administration.
For any that contributed to this genetic study that we posted here (and elsewhere) - thank you so much! The cutoff was last night, and we had a great result - 71 sets of data.
I will post some tidbits of "aggregate" results here (and in the other groups this was put in). I am wary of posting full results on facebook, because then facebook could claim some ownership. Instead, full analysis results (data in aggregate form only) will eventually be posted here:
That link above is live to the public now, and you can see (in the last revision of a registration plan), what are the 78 SNPs that we have looked at.
We are going to look at many more SNPs, though, and do lots more analysis than what is listed there. The plan was just to lay out in advance what we could declare as significant in this pilot study.
MountainMom got a reaction from Sanda967 in What is going on? New symptoms.... Please help.
Hi, I've posted before about my son, 7 who has had PANS since 4 (Lyme, Bartonella, etc.,) but was only diagnosed this August. I'm hoping if I share someone will have some insight. This board is so full of knowledgeable, kind people.
My son has always flared in the winter months, usually Jan-May. In the past his symptoms were ADHD, mild tics, movement issues, mild OCD, difficulty remember things, what looked like absence seizures, severe anxiety, panic attacks, hoarding, depression, intrusive thoughts, separation anxiety and severe sleep issues. However, this summer, though he did improve in some ways (his anxiety improved), he never got back to his baseline. In August, he tested positive for Lyme & co and was diagnosed with PANS and we began treatment with antibiotics and supplements. We also took him off gluten at the urging of our Llmd after genetic test revealed he had a good chance of being Celiac.
We saw immediate improvement. For the first time in years, my boy was back. It was amazing, but, short-lived. In November things were a bit bumpy and then December 1st he had a big flare that continued through most of February. However, symptoms were different then they'd been in the past. He had a lot more OCD which mostly looked like tapping his body and walls, etc. He was fairly anxious, though not as severe as in the past (no panic attacks).
Our doctor took him off all medication for two weeks to see if it would help in January. It didn't help. Things got worse and so he was put on new antibiotics (Amoxcicillyn and Bactrim). They seemed to help. He had two great weeks in February and things seemed to be better. He was happy again, playing with friends, etc.
Then about a week ago, panic attacks began again and now, suddenly, he won't drink anything unless I take a sip first. If I cook, he wants to watch me cook to make sure it will be "safe" for him to eat. He won't eat if he accidentally touches his food with his fingers because they might have touched his hair or the floor. He's never had any issues with contamination/eating issues before. This has all happened so quickly, and I'm so scared it is going to get worse.
Two and a half weeks before this most recent flare began, he had the flu. Could that be the cause of this- or is it too long in the past to be the cause? Why would this flare be so different from past flares (he still seems mostly calm and happy)? Why is he still flaring? Shouldn't he be getting better with a diagnosis and prophylactic antibiotics?
Please tell me if there is something I missing.
Feeling desperate and overwhelmed. Thank you.
MountainMom got a reaction from Sanda967 in Bartonella
I’m hoping someone experienced with Bartonella can help me with this. My DS has continued to flare despite beginning treatment in August for Lyme, Bartonella & Babesia/PANS. Our Llmd says Bartonella treatment is particularly lengthy and believes that this is what we are continuing to deal with. Can anyone speak to how long treatment took them for Bartonella? Since the beginning of December, we’ve had two good weeks. I miss my boy.
MountainMom reacted to SuzanneR in Supplements causing flare or something else?
There are a few things to consider in this situation. First, how much GABA is he getting and when do you give it to him? Is he also on Theanine (it helps produce GABA)? Too much GABA can actually be converted back to glutamate, increasing that fight or flight response. You would see a jumpier, more anxious and fearful child in that case. You can try giving him GABA just once after dinner (and not in the morning). Second, are you doing anything to help him detox and excrete what the antibiotics are killing? If not, he likely needs kidney and liver support to start and perhaps something to help detox the brain. We use a homeopathic called Drainage Tone for brain detox. It really helps. We get it from our chiropractor or our doctor. Finally, when you start killing bacteria with the antibiotics, often yeast is released too (it hides in the cells with the bacteria and viruses). So, look for signs of a yeast flare. Perhaps treat with an anti-fungal like Nystatin or Lauricidin. Makes sure he drinks lots of water, give him epsom salt baths to help with detox, and, if you have access, a dry sauna. Hope some of these suggestions help.
MountainMom reacted to MomWithOCDSon in Sensory Processing or PANDAs?
I suspect it is a combination of both...an unfortunate marriage of a genetic susceptibility and the PANDAS-related inflammatory response. And it may not be a "flare" so much as a continuation of the original PANDAs/PANS immune onslaught; many of us find that a "typical" or shorter course of antibiotics is insufficient for fully addressing our kids' conditions, so a two-week course may not have fully addressed the "animal" that is PANDAS/PANs.
Our DS, too, had some mild sensory issues prior to a the full-blown PANDAs episode that sent us into a tailspin. Once the PANDAs hit full force, we had him professionally evaluated and as with most of his behavior set, the results came back "borderline." During PANDAs, he was alternately identified as "borderline" a number of things: OCD, Asperger's, PDD-NOS, Sensory Processing Disorder. You name it, the poor kid, at one point in time or another, wore a label for it.
What I can tell you is that, with the conclusion of effective PANDAs treatment, the sensory and social issues resolved 100%. One doctor even took steps to revise his file to remove the former ASD notation he'd made there.
I would say, however, that I don't think you are wasting any effort in giving her access to OT; I think it will only help her as she heals and enforce positive behaviors and coping strategies that will stand her in good stead going forward.
All the best!
MountainMom reacted to MomWithOCDSon in School
My DS was older than yours by the time his PANDAS was such that it really made school an issue, but I can certainly relate to what you're currently experiencing as my DS first got a "regular OCD" diagnosis at the age of 6, just a few months into his first grade year.
Do you have a therapist involved in your DS's overall treatment plan at this point? Obviously, we had one because we couldn't get anyone to sign on to PANDAS at the time, let alone treat it, but he was a good resource for in-school and at-home strategies for addressing our DS's OCD (mostly perfectionism, which led to either over-erasing or avoiding writing down anything at all, for fear he would get it "wrong" somehow) and attentiveness issues. Mostly, at the time, we made appointments with DS's teacher(s) and the school psychologist (maybe social worker, too, if there is one), gave them some material about his behaviors and what they might see (you could add "during a flare"), and any suggestions we might have for accommodating him reasonably in the standard classroom but not at the expense or disruption of the other students. It appears your teacher is doing that with her timer tactic, though you may be right that it might increase his anxiety and, ultimately, he may still fail to "cooperate" because that OCD fear of doing something wrong will typically outweigh the fear of displeasing the teacher, in our experience, anyway.
It would probably be helpful to get the school psychologist and/or social worker involved, if possible, because they can help the teacher with appropriate strategies in the classroom, too; yours is likely not the first kid who needs some accommodations that they've come across, with or without a PANDAS diagnosis. They might wind up suggesting a 504 Plan which would be something to consider.
I would also suggest the book "Students with OCD: A Handbook for School Personnel," by Gail B. Adams, ED.D. I bought copies for myself and for my DS's administrator and psychologist when it first came out. In remembering that the school is not equipped to "treat" PANDAS or OCD, but that their goal is to give your kid the best education possible, before, during and after illness or a flare, giving them tools to meet the primary behavior set in the school setting, IMHO, is really all that we can ask of these folks. The ideas and suggested accommodations in this book are really, really helpful, in our experience. And because they come from a "third party," we didn't get a lot of pushback as though we were advocating for something that was inappropriately lenient or anything.
In the end, it might be that your DS needs to have auditory assessments, rather than written ones, during a flare so that he's not required to write things down on paper for a period. He might need some alternative assignments, depending on what's at hand; for instance, my DS HATED "coloring" as his small motor skills were never up to par when he was sick and that messed with his perfectionism (staying within lines), plus, he quite honestly thought that the very act of "coloring" was a waste of his time; some kids love it, he hated it. So the teacher came up with some other options for him that were more "spatial" and less triggering for him. We were also able to get them to eliminate some of the "busy work" -- tasks and/or assignments of nominal value that were more "crowd control" and "quiet time" undertakings than they were teaching of basic concepts. So, in other words, if he could demonstrate his mastery of the math by doing 5 problems instead of 10 (many of which were repetitious), then he was awarded grading in accordance with the reduced quantity of problems he was assigned.
Good luck to you!
MountainMom reacted to NYCMom in Prophylactic Antibiotics
A couple of thoughts:
1. Antiobiotics treat more than just strep, so prophylactically will protect from other infections that could be triggers.
2. Those of us who have treated prophylatically, have also found anecdotally that the antibiotics seem to have a secondary effect of reducing inflammation.
MountainMom reacted to LNN in Need Help!
It might help you wrap your head around what's happening by considering that you have PANS, not Pandas. Pandas is an autoimmune response to strep. Pans is the same thing, except in addition to a strep trigger, it can also include Lyme, co-infections (e.g. Bartonella), mycoplasma, and viruses. Both Pans and Pandas come with the OCD, anxiety, tics, sensory, urinary issues, brain fog, temporary loss of academic skills, etc.
So you may have resolved the Pandas triggers, but by treating the Lyme, you're now experiencing a Pans type of herx, which is more neurological than physical, but stems from the same toxins and inflammation of a herx. And yes, yeast die-off can contribute to the herxing.
There are a couple of options. One is to focus on detox - bentonite clay or charcoal as a binder of toxins (taken away from any antibiotics, supplements or other medications), epsom salt baths if tolerated (some people find them relaxing, others find them irritating). Motirn or tumeric or a hogh quality resveratrol for anti-inflammatory. Alka-selzer gold (must be gold - available on Amazon). Taking yucca root or ornithine can help with the yeast die-off. Yeast die off releases aldehyde, which gets broken down to ammonia - a neuro-toxin. Yucca and ornithine can help lower/eliminate ammonia.
Another option, which can be done instead of or in addition to the above (with your doctor's ok), is to either reduce the dose of your antibiotics or pulse it - i.e. take them 3 days on, then 4 days off, or take them 7 days on then 7 days off). This gives your body a chance to rest and clear herx byproducts away between waves of antibiotics.
If you're interested in using herbs, you can also consider Dan Shen http://latitudes.org/dan-shen-become-important-treatment-pandaspans/
which can help close the blood-brain barrier and reduce Pans symtpoms. At your age, I'd take the higher end of a dose (e.g. 1/2 to 1 tsp 3-4x/day).
Also, be aware that for some with Lyme-triggered Pandas/Pans, IVIG is helpful. For some, it produces a pretty significant herx. You're basically super-charging your immune system and it will attack the Lyme using donor antibodies - antibodies your own body may not have been able to make enough of. So it could cause a lot of inflammation while the flood of new antibodies attack the Lyme infection. Managing inflammation will be key.
Will you be able to return to school (I assume you mean in January?) Hard to say. But from my own experiences with two Pans kids, there's no way to get healthy without going through the valley of death. Trying to go back to a normal life won't be possible until you tackle the Lyme. So simply stopping Lyme treatment might buy you a month of two. But your Pans symptoms probably won't resolve until you push through the Lyme treatment. You can do so in a gentle, slow manner to minimize herxes, or you can go for a full onslaught of treatments, but one way or the other, you will probably have neuropsych symptoms until the thorn is out of the lion's paw for good.
I do hope you're taking a good probiotic (at least 30 billion CFUs) taken 2 hrs away from antibiotics, to help your gut health.
The good news if that yes, eventually, you can get back to a normal life. It took my son several years to beat Pandas/Pans and Lyme, but he's been off all medications for 3 years and now only gets a slight "off" feeling when he gets a bacterial infection in the winter. A round of antibiotics or a week of herbal antibiotics gets things right again and normalcy returns. So have hope. It may take longer than you wish, but once you get rid of all underlying infections, you can get your life back.
MountainMom reacted to MomWithOCDSon in Help with meltdowns/mood lability
My son was older when PANDAs struck him (12), but we still saw lots of meltdowns, mood swings and generally age-inappropriate behavior. I don't know about these being the result of a herx. I attribute my DS's behavior during that period to just feeling overwhelmingly anxious and out of control...his executive functioning was basically nil, so all of the things that had previously come naturally to him and he could do well and with joy, were no longer available to him. That was incredibly distressing and frustrating, so his emotions were constantly taking over and he'd melt into a puddle of dysfunction. I might suggest the following:
Eliminate all but the essential activities for a while so that he's not over-stimulated and/or expected to "handle himself" in as many stressful situations, even if they all were fine before; Try using anti-inflammatory and/or calming meds and/or supplements to help his brain "settle down" a little while the abx do their thing (ibuprofen, valerian root, etc.); To the extent possible, build lots of "breaks" into his day to allow him to rest and regroup as managing oneself under this level of stress is very tiring, emotionally, mentally and physically, so he's probably in need of some quiet breaks during which he's not expected to play with others, engage with others, etc.; While you make the preceding accommodations, don't entirely forego your family routine, age-appropriate expectations, etc. Decide what non-negotiables you'll continue to enforce so that he knows there is still structure, support and boundaries even while he heals. It will help him feel safe, secure and less out-of-control in the end. All the best to you, and good luck!
MountainMom reacted to makeitfromscratchmom in Improvement on steroids = PANDAS?
I totally agree with bobh. My kids were lucky to find doctor L in Washington DC to diagnose them both as having PANDAS (very different symptoms though) and when she put both of them on steroids there was an immediate difference. That noted, if you noticed a difference in your symptoms your OCD and other symptoms it would appear to be biologically based... My kids also had very similar symptoms that you mention. We have never done the Cunningham panel but have worked with first D. L with antiobiotics and then moved on to a wonderful naturopathic doctor, using supplements, Low dose naltrexone, and other things to bring both kids symptoms way down. We also found borrelia Lyme in both kids and mycoplasma with my daughter and have worked with those areas too. My daughter also had her tonsils and adenoids out and it also helped significantly. She had a number of OCD issues that are still there but not nearly as significant as they used to be. She still has the sensory issues but her handwashing has almost totally gone. My kids were diagnosed six years ago and are still have their moments but it is under control and they are able to function quite well despite some very bad years.
I am not sure where you are from or your language, but there are many support groups on Facebook in different countries and states in the US. I am currently in Europe if you need help there.
You are a strong man and you will overcome this. There are lots of people out there to support you like on this forum. We all want to help.