JAG10

I think anxiety can impact the bowels. I had a friend tell me her poop turned white after a tragedy in her family. Perhaps your dd's anxiety about holding her bowels so she wouldn't have to face the stage fright of someone waiting for her set her off? I admire you. I've never sent my dd12 to sleepover camp. I'm sure anxiety would be high for us both.

EAMom, Is it possible that her uptick in symptoms is a result of a naturally high anxiety circumstance? Being away from home, around many strangers, all the anxiety that comes with the social posturing of young teenage girls? Like a learned response instead of an infection based response? There have been a couple of occasions when I was fairly certain my dd12 was not sick, but in an anxiety provoking situation and I would see a symptom stick its tongue out at me. So far, I've dealt with this on our own, identifying it, naming it, calling it out and sending it packing. It is not frequent enough or severe enough (in my eyes) to warrant starting up therapy again. When you said sleep away camp, that was the first thought that popped in my head. Just a thought. Jill

I want to chime in with Laura's experience. I was trying to figure out supplements on my own and we recently had labs done. Um, my girls B-6 and B-12 levels were quite elevated thanks to mom. Calcium too. Didn't check everything, but I'm getting the same vibe. Emailed Laura where we shared a "yeah, you too?" moment. I stopped everything but abx and probiotics. Now, I wasn't seeing a ton of behaviors, but some sluggishness and lack of motivation......ok, it's summer. Do I have to read into everything? Apparently I do because two days after stopping I start seeing some get-up-and-go in my ladies and new found cooperation to do more than that which brings us pleasure. Ok, now what. Well, both girls are low in copper, they need some. Found no multivitamins that supplement copper without folic acid. I was giving way too much in several areas, but they still probably need a little. Can I really pull off putting together a customized multivitamin? IDK.

I think puberty helps......but appropriate treatment sets Puberty up for success. My dd12 will be 13 in December, menses began last Sept. She looks so different in so many ways! She never has had the pains, nausea or headaches and does not have Lyme/confection involvement outside of myco-p. She began IVIG when she was 10. By the time she was 11, we realized one IVIG and done must be a pipe dream for really young kiddos or fresh onset, because it was not enough for her even though it helped greatly. I've read people document that the onset of menses shuts off pandas like a faucet. I'm not sure I would describe it that way. Swedo also says 98% of 12 y.o. are immune to strep, so there is another timing in the puberty range kiddos favor. But there are lots of bacteria and virus out there, so taming the over-reaction of the immune system is key. When you refer to expensive test, what do you mean? Most people who have pursued Lyme don't put a lot of faith in the testing, but the LLMDs treat on clinical diagnosis of symptoms. Does your LLMD think your symptoms indicate Lyme but due to the muscle testing, it must not be so? That seems contradictory to most experiences I've read about.

Hi Tired, LLM was referring to this post on my dd12's standardized testing http://www.latitudes...27 My girl too was tested at 6 with a 127, then a cognitive snapshot at 9 in 3rd grade indicated IQ 90... How ironic is that?!?!?! IQ testing is known to be "softer" the younger the person is tested up until age 8.....but not 40-50 points softer!!! It is not a multiple choice test, there is no way someone scores better than what they are capable of, but there are unlimited reasons why someone can perform worse than their capabilities. This PANS beast being one of those reasons. My dd12 went from the 10%ile to the 93%ile in math between 3rd and 6th grade; the difference being appropriate treatment for her pandas in between. She has not had PEX, but 9 IVIGs and 2.5 years of abx. And systemic yeast treatment because of the abx....it all gets complicated, no recipe or cookie cutters, but even a tired momma who musters up the tenacity can beat this beast taking it one day at a time. I'm waiting for the doc to call me right now for a follow-up; it's been 4 months since my dd's last IVIG and she is doing great. She may have even gotten strep in the middle of July and the only evidence is her ASO shot up- i guess that's what they call immunity. We are coming up on one year post the onset of menses for her; that and the IVIGs and a little help from my friends with supplements has helped tremendously. I think it's possible for this to be drawn out longer in boys. You will find a way even if it's not the way you anticipate right this moment. You will. Jill

I wasn't there, but I read the thumb-hammer analogy written. The brain is simply amazing. Think about stroke victims who have lesions in their brains, cut, gone. But those signals can be re-routed and re-learned. Does your brain work the exact same way it did prior? No, but if you regain the skill via another neuro route, that's what matters, right? And our kids have youth on their side too. I'm an SLP. When I work on a child's articulation I'm changing a firmly developed neuro pathway. They've been making that sound that way hundreds of times a day for many years. Am I changing that original pathway or re-routing a new one? I don't know for sure, but the result is what matters. Idk, "brain damage" sounds extremely scary and loaded whereas changing a habit sounds like something everybody does at some point in time. Thats where therapy comes in after you get the assault to stop. I'm sure technically, she's right because she's Swedo. I just don't think the result of what she is referring to is as catastrophic as brain damage sounds. I could be wrong, but my girl has been sick a long time and that's not what I've experienced. Has she had to be retaught somethings? Yes, maybe that is brain damage, but that term implies no re-learning or regaining of skill and I don't think that's the case.

Nancy, So grateful to you for sharing your notes and knowledge! My girls have been doing well behaviorally. DD12 is now 14 weeks past her last IVIG. This histamine conversation caught my eye. Both girls and myself- we are covered in bug bites again. I don't think it's just Mosquitos either; some result in wide, flat reactions while others are more focal and intense. We are not out at dusk yet we are covered. My older girl who had the OCD with scratching then picking has been very responsible and diligent about taking care of each bite early so they don't get to a point where they scab. Sorry, kinda gross info. Alright, so bug bites are a histaminic response and all 3 of us respond to a much greater degree than normal. Does anybody know where this whole H1/H2 receptor conversation fits in with focal, cutaneous reactions? As far as I can tell, we do not suffer from systemic allergies; maybe a little when the pollen count is really high, like over 10 but that is really nothing compared to so many sufferers. I just really think the way we respond to insect bites is weird. And dousing them in deet everyday for months is not an option. Any ideas if this fits in anywhere??? Anyone? Can't wait to read more info on the conference as well. Any news about Dr. Cunningham's lab? Jill

I wanted to add a small piece of practical advice. If you have an expert on board, but with limited availability, what might be most helpful for the here and now is to find a local doc who may not have expertise, but is agreeable. So maybe, based on what you've been reading or advised by someone who has already been through this for years, you think an abx change might do the trick.... A local doc who is agreeable can hold you over in between specialist visits. A DAN doc or ASD sympathetic doc can be helpful in this way. I wouldn't expect them to get you IVIG covered by your insurance but if you can find someone local for abx, labs and maybe prednisone once in awhile, you have custom-made a team that is manageable for the situation as it is at the moment. That worked for us. Also Kath's suggestion about a monthly standing appt if you are not on his current schedule for treatment is a good idea if it's in your budget. We are likely stopping IVIG treatments and I plan on implementing that strategy. I don't mean to sound callous; I guess practicality can read that way. These problems are becoming more and more systemic in health care even with widely accepted diagnosis. Many are scared beyond belief how the Affordable HealthCare Act will impact our children. One day at a time is all we've got. When you go on 7/31, you should be thinking about and discuss with him how you will make it to your next appointment if a, b, or c happens in between.

There are 3 prongs to service-related industry; price, expertise and availability. For PANS, I would add proximity which could feed into price/cost. You will always have to compromise on at least one prong. Let's say you want a facelift. You want the best plastic surgeon, you will pay top dollar and be on a long waiting list; 2 prong compromise. I have read parents complain about getting in touch with every single one of the most frequently used docs mentioned here; drs B, T, K and L. Availability is a compromised prong for all of them based on the "my child's behavior has changed, something is up" scenario. That is a very frequent occurrence and likely perceived as more of an emergency to the parents than the doctors. Now, my child is in the ER and about to be admitted to the psych ward will likely get a prompt return call from all of them, but it sounds like there is a disconnect between what constitutes an emergency between the parents and these specialists; all of them. There are doctors that offer "concierge" care for a price where you are provided a private phone number or email with a guarenteed response within 24 hours. I have not heard of that being offered by any of those 4 doctors, though they might want to consider it. Dr. O'Hara has a system where she will promptly respond to emails but bills her regular hourly rate ($500/hr or 1/4 hr minimum) to read, chart, and respond. They all make it clear that the service they provide cannot substitute the need for a primary pediatric doctor. So this gets tricky for parents when their children are reacting behaviorally to viruses or bacterial infections; common occurring illness in childhood with uncommon reactions. It boils down to a supply and demand issue that is only likely to get worse in health care. Let's face it, we all want an expert PANS doc that takes our insurance and is dependably available whenever we have a question or concern. I don't think that realistically exists. And if it does, don't post about it or you will lose your availability prong!

Hi Debbie, I am one of those professionals sitting on the other side of the ER/IEP table. I'm an SLP and am close friends with the school psychologist I work with. We are both intimately aware of each other's children and their issues. We have had many conversations about the limits of standardized testing, ect. I've said this hear before: in-depth standardized testing can be useful when your children are well and capable of doing their best because they give you an objective benchmark of cognitive health. IMO, testing "our kids" when they are sick doesn't provide much useful information except perhaps a benchmark of how much they are impacted cognitively by their medical issues. There are hundreds of reasons why children perform below their ability. They never perform better than what they are capable of doing. I truly believe this, have found it true with my own long-term pans children and do not believe there is "permanent cognitive damage" from pans. Parenting pans children has made me a better therapist and diagnostician. It has changed me for the better in terms of the manner and sensitivity with which I communicate with my students' parents. It has humbled me to broaden my mind into accepting that information I was taught as fact is not necessarily absolute. There are many factors to consider when determining which doc will be the best fit for you and your daughter. Is she the oldest? You mention above average siblings.....do you worry your other children are impacted as well? My younger dd9's lab work is very similar to her sister's, but for whatever reason, the impact of symptoms is milder. I know I am not out of the woods yet with these girls, but I know I possess the knowledge and strength to do what needs to be done for them and that gives me a peace I never had before I knew their symptoms were infectious-based. Best wishes,Jill

Hi there, Please see this thread I posted a little while ago. "Stale" cases are not impossible to treat. They are not going to get the attention of NIMH and might be too complicated for the evening news or a magazine, but there are others to fight that fight and we thank them. Your priority is getting your baby well and it can be done. You need the right team of docs and the tenacity to see it through. http://www.latitudes.org/forums/index.php?showtopic=17589&st=0&p=140427&fromsearch=1entry140427 Jill

One more thing, have you ever looked into Dr. Nancy O'Hara? She and Dr. B share many patients. She's known for being really good at finding the keys Dr. B can't find and vice versa. She is also in CT. If we hadn't gotten to the place dd is now, she was going to be my next step. You should check out her website when you are ready and look her up on Youtube.

Hi there, sorry it's been such a struggle. Has anything changed since the last one? Did Dr. B ask you to do something different, change abx or add anti-viral (you mentioned 5th's) anything that he used to justify giving one or two more IVIGs a try? If nothing has changed, why would the result be any different? I mean, I can see the professionals posing that it takes a long time to heal and some very sick children need many IVIGs. But NO progress after 9??? My dd12 has had that many as well and your dh was very sweet to us one time when we were both there. She has her 10th scheduled for the 3rd week of August and that will be 16 weeks after her last one. It is scheduled as a safety net. As of today, 10 weeks after IVIG #9 she is maintaining full recovery. (Lord, please do not punish us for typing that!) It took 8-9 IVIGs to get her all the way there. We are drawing labs in a couple weeks and having a phone conference in the beginning of August. If everything stands A-okay, we will cancel her 10th. There were viruses & infections that caused speed bumps in her recovery process. And yeast prevented her reaching that last 5-10% for many months until this know-it-all mom appeased dd's regular doc and tested for it. Duh, size 12 foot in mouth. She was sick a long, long time before proper medical treatment was obtained and we were told she had been sick too long to respond to medical PANS treatments, but that was WRONG. So, I agree, it can take awhile, but dd was always better off after her very first IVIG than she was before it. Something or string of things is impeding your boy's progress. I don't know what those things are, but if nothing has changed since his last one, I wouldn't do #9. Not now. So where do you go from here? You continue to obtain some minimal relief from psych meds while you continue to work the problem. Catch your breath, tie a knot and hold onto the end of this rope. The set of keys that will unlock Ian's health is out there somewhere and you will be tenacious enough to find those keys.

Kath- I've gotta admit, I saw the topic and thought you had a little bundle on the way. Any news on Josephine Elia?

Awwww!!!! You enjoy the brag, Mom! We know what you and your family have been through. We are smiling with pride right beside you. What a joy to witness! Congratuations and best of luck to dd!

Has anyone tried using two different "strengths" of OLE? One as prophylactic and another, more potent when they feel illness coming on? http://www.olivus.com/Caps-Combo-NaturalCaps-1000-OliveLeafMAX-60_p_47.html Just curious if anyone is having success with this approach.

i haven't read it in some time -- but i think Kenneth Bock's 4 As book has some good recommendations about vaccs -- with considerations for day care or not/ what to get young/ what to hold off on. when i read it, i had already vacced my kids but was sad i hadn't known that as a resource. I have that book, but don't remember that part. Thank you for the recommendation!

Depending on what diagnosis and paperwork you have accumulated, you could apply for SSI, social security income. This is based on a diagnosed disability not income level.

I just forwarded the link to a special ed teacher I work with who is pregnant and due with her first in September. I wish I had answers for her because I don't think absolutely no vaccines is the answer either. She is not getting the day old Hep B vaccine and wants to delay and spread them out as much as possible. Any other advice people would recommend? I truly put forth effort to keep the resentment deamon out of my life and head. It's so hard not to get filled up watching this. In the Philly area, there are commercials on the radio for CHOP touting their reputation as the leading children's hospital and all these little kid voices saying "all better." That commercial stirs the resentment deamon inside me. I know it's not healthy for me or any of us. We have to focus those feelings into efforts of positive change for future generations.

http://www.dramyyask...very/chapter-3/ So Nancy, you are saying that it is not only important to supplement methylfolate but also to avoid folic acid, yes? All those multi-vitamins and fortified foods, right? I know I've seen that mentioned. Could you kindly explain how each of the B vitamins fits in this picture for the C677t mutation?

I have dd8 who is a #3 and dd12 who is a #2. Only dd8 has had the MTHFR testing and is positivie for one copy C677t. I haven't had dd12 tested yet, but she is positive for the Factor V Leiden mutation which commonly occurs with the other. I'm not sure where or if the MTHFR thing fits into this.....I guess I was thinking more along the lines of left brain/right brain differences. You know I'm an SLP.....all I can say is this: after years and years of trying all these different prescription medications and supplements with dd12, I've noticed that the ones that are SSRIs or akin properties to antidepressants HAVE AN IMPACT ON LANGUAGE AND SOCIALIZATION. When she was 6 (before things got really bad with her) we tried St. John's Wart based on something I had read in Dr. Amen's book about hyperfocused ADHD and it clearly impacted her verbally with regards to conciseness and fluency of message, vocabulary choice, and overall flow of conversation. The social piece followed right along with that. I remember being curious about why "antidepressants" would impact her this way.....she wasn't depressed by any stretch of the imagination, she was very, very happy all the time. I've seen similar results with her with straterra, 5-HTP, and zoloft......but it always came with some negative that was just trading one problem for another. Amen calls these meds "anti-stuck meds" rather than anti-depressants. Now I can't get her to shut up

Well, LLM and MomwithOCDson, you are looking at this at a much more microbiological level than I what I was speculating about. I suppose I was thinking about the article's point about helping kids on the spectrum. ASD kids tend to be less verbal and/or less social. Then I was thinking about how over the years of reading posts, we could broadly divide our pandas kids into 3 categories: 1) those with ASD that improves with pandas treatment, but characteristics remain, 2) those who when in exacerbation could look ASD but after pandas treatment have no ASD characteristics, And 3) those who no matter how bad of an exacerbation from pandas never would be suspected of being ASD.

Uh oh! If my memory is up to snuff, chicken pox lasts 2 weeks, right? Have you tried the search bar with "chicken pox"? I can't recall reading any posts about chicken pox but I can imagine you are in for a rough go of it. My dd12 used to scratch and pick at bug bites until they scared. I used to have nightmares about what chicken pox would have done to her!!! I feel for you. Hang in there best you can.

I'm just curious if those who did not find NAC helpful would describe their children as on the verbal side, very social.....kind of anti-ASD?

This looks so promising and hopeful and he looks so....young! All great news. I hope some of our West coast friends can go and then report back here???