dasu

I'm not sure that spinal taps always show the problem. Our dd had a spinal tap when she had a chest port put in for IV abx. The spinal tap was normal, but no one ever told us what they were even testing for. We KNOW our dd has Bartonella, as the streak like rash showed up a couple of months later, but this did NOT show up on the spinal tap.
 
The same thing with urine catches - they only test for a certain number of things. They don't test for all that could be in the urine. Even mycoplasma testing - there are lots of different mycoplasma species - they usually only test for m. pneumonia. My point being our kids CAN have something wrong, but the testing leads us to believe there's nothing there, and the docs aren't trained to know what else to look for.
 
In our case the spinal tap was NOT useful. Do not beat yourself up, this is NOT YOUR fault. Sadly, our medical establishment is in too much of a rush to brush us off and send us to the psychiatrist...

I can relate, sadly. My daughter was not in the right birth position and I and the doc knew it 30 days before I delivered. For 30 days I did exersizes to turn her, and when I went into labor, the staff never said anything about her not turning, so I assumed she turned. She did not, and the doc did not say anything about a c-section. Needless to say, she was born natural by forceps and sustained several serious birth traumas. If I knew then what I know now, I would have pushed for a c-section which is how babies in her position should have been delivered.
 
I still beat myself up over this, but I heartily recommend you do not beat yourself up--yes I am a hypocrite . I doubt you knew she should have a spinal tap, just as I did not know my kiddo needed to be delivered by c-section. Hind sight is always 20/20. Blaming ourselves does not help our kiddos now. It just wears us down (speaking from experience).

Thank you for the posts! Yes, we are seeing a PANDAS/PANS doctor and we are on week 3 of Biaxin. We did a 5 day steroid burst at the beginning. They take Fruit Anthocyanins and we just started enhansa curcumin. We started to see some results on day 6. By day 10 our primarily OCD daughter started to takes a shower, put pj's on and brush her teeth before bed, and she had desire to live! But this last week, her evenings are harder. Her days are up and down. She will say, "I think these meds are working, I can take in my surroundings", etc. Then a little later, she will fall apart and be upset. After reading your post, it makes me think the steroids gave the little extra that we need? With her twin, she is different. She is starting meds as a girl that is withdrawn and can sleep a lot. This girl that loved to be by other kids does not interact as much. Without going into her history, she did not tell us things that have been going on in her head. She has been obsessing over things, hearing some voices and seeings movements that scare her. She has cried 2x in the last week (which I was thrilled to see some emotion!) and said that instead of hearing voices 10x a day, it is only 2 or 3 and she does not see movements as much. We never knew this was going on. Two years ago right now, she was a wreck with anger, anxiety, some OCD, to the point where she could not go into the dance studio, into a clinic or go to school many days. We ended with a girl that is better on the outside, but still not well on the inside. My plan is to see a naturopathic doctor that specializes in PANS/PANDAS/Lyme, immune, and digestive issues in the next week or so. As for IVIG's, our primarily OCD daughter does not qualify because she has such low IGA's.
 
How are your children doing now? How is the OCD? What do you think helped the most? Can you tell me what a steroid infusion is? It would be nice to talk sometime.
Thanks for the replies.

Mycoplasma is a common co-infection to Lyme. Mycoplasma is written about widely in Lyme world so I thought I'd include a great article from that perspective. Combination antibiotics are often used to treat and the article explains why. LLMDs are very versed at treating. It is important to watch direction of titers while treating.
 
We have 8 year old boy/girl twins.
 
 
http://www.immed.org/infectious%20disease%20reports/infectdiseasereport06.11.09update/pha_nicolson_0709_v4.07.pdf

i don't think you are out of your mind -- I think you are aware of something -- something most people, even family members, are not aware of.
 
many years ago, I was at a group of about 4-6 pandas moms. we were discussing our pandas child. we met again about 3 months later - we were all discussing how another child was now showing symptoms -- each of us! it was really bizarre.
 
I remember my 2nd son, who is the older, having trouble at night -- something like night terrors as he was going to sleep. (it's funny how you actually do forget some things!) I said to dh , "are we just going to wait until he falls apart to take him in?" well, apparently we were, because some weeks later there was no doubt we needed to have him evaluated for pandas.
 
the thing is - I even think now, if it had been him first, he could have flown under the radar as troublesome and many people could have had many explanations about his behavior. my 1st son is classic, no doubt pandas; the second is diagnosed - but not the slam dunk case of the first. 2nd has clear infection related anxiety and OCD behaviors. but he also has subtle anxiety and OCD behaviors, with a huge step up with infection. it is something that impedes his success, but not so much that it impedes his life, like the classic son. so, if I did not know what I know because of the 1st son, would the 2nd son be diagnosed? maybe, maybe not. whereas the 1st would certainly have.

There isnt much out there written from perspective of the patient, mainly its parents. But there is a lot of first person information on symptoms like OCD. This film captures some of that http://www.ocduk.org/locked.
 
Here is one awesome blog from a super-smart and articulate woman about your age with PANDAS https://thedreamingpanda.wordpress.com/

this may be the one mechanism that makes immune reaction into autoimmune disaster. at any rate, quite promissing
http://www.medicalnewstoday.com/articles/301016.php
 
 

PR40,
 
When I read the article that you linked, I noticed this one as I started clicking around that site. Thanks for posting.
 
http://www.medicalnewstoday.com/articles/152822.php?trendmd-shared=0
Hydrangea Root Shows Promise In Treating Autoimmune Disorders
 
An exciting new area in the field of autoimmune disease research is learning about the role of a particular immune system cell called the T helper 17 (Th17) which is genetically different from other types of CD4+ T cell like the Th1, Th2 and T-regulatory cells and appears to play a unique role in the part of the immune system that causes harm when it over-reacts.

when there is a immune reaction there can also be negative (auto-immune) effect on his system.
being cut by glass should provoke an immune reaction.
there is also some pscyhological effect of being wounded.
all these should not last too long.

I believe our kids have had the 2g/kg dose over two consecutive days. Is your doctor planning on administering IVIG on a monthly basis?
 
Our kids have had IVIGs but we have yet to really get to lasting success yet. We did notice a gradual improvement over the course of 4 months though, looking back. (With all of the fluctuation in symptoms, its hard to assess progress in the moment)

from the link above
http://journals.plos...al.pone.0101257
Antibiotic Treatment Attenuates Behavioral and Neurochemical Changes Induced by Exposure of Rats to Group A Streptococcal Antigen
 
 
 
More on B. fragilis
 
http://www.thedoctorwillseeyounow.com/content/autoimmune/art3294.html
 
 
http://www.caltech.edu/article/13412
04/21/2011
Learning to Tolerate Our Microbial Self
 
excerpt underlined by me

From that vantage point, the bacteria are able to orchestrate control over the immune system—and, specifically, over the behavior of immune cells known as regulatory T cells, or Treg cells. The normal function of Treg cells is to prevent the immune system from reacting against our own tissues, by shutting down certain immune responses; they therefore prevent autoimmune reactions (which, when uncontrolled, can lead to diseases such as multiple sclerosis, type 1 diabetes, lupus, psoriasis, and Crohn's disease).

Bacteroides fragilis has evolved to produce a molecule that tricks the immune system into activating Treg cells in the gut, but in this case, Mazmanian says, "the purpose is to keep the cells from attacking the bugs. Beautiful, right?"

In their Science paper, Mazmanian and colleagues describe the entire molecular pathway that produces this effect. It starts with the bacteria producing a complex sugar molecule called polysaccharide A (PSA). PSA is sensed by particular receptors, known as Toll-like receptors, on the surfaces of Treg cells, thus activating those cells specifically. In response, Treg cells suppress yet another type of cell, the T helper 17 (Th17) cells. Normally, Th17 cells induce pro-inflammatory responses—those that would result, for example, in the elimination of foreign bacteria or other pathogens from the body. By shutting those cells down, B. fragilis gets a free pass to colonize the gut. "Up until now, we have thought that triggering of Toll-like receptors resulted solely in the induction of pathways that eliminate bacteria," says Round. "However, our studies suggest that multiple yet undiscovered host pathways allow us to coexist with our microbial partners."

Both:
 
I have chronic lyme and in general just feel 'better'.... like a normal person when I do the shots. I am back to my old shelf prior lyme disease. I was treated for 3 years with antibiotics and have been off antibiotics 2 years. I still do a lot of maintenance therapies to keep Lyme in check: IV Nutrients, IV Chelation, PK Protocol and LDA/LDI Shots.
 
Our younger son has no notable symptoms and had rage behavior, OCD, sensory integration, Asperger's, heart issues, PANS. Most of his symptoms resolved with 4 years of combination antibiotic therapy. However, he too just seems better when he does the shots. Doesn't regress at all when off antibiotics.
 
Friend's DD diagnosed PANs (Lyme et al) is off antibiotics and has seen improvement in OCD since starting LDA/LDI.
 
Our LLMD that provides LDA/LDI has all kinds of patients with variety of improvement. He feels about 30% who receive the shots see tremendous improvement across the board even psychiatric symptoms.
 
Hope that helps.

PANDAS is a devastating disease on kids and parents. We have been in similar straights barely holding down a job, paying bills, keeping home and body clean and cooking. There were months we hardly left the house, so yes its isolating. Between not being able to do typical activities, peoples judgements and protocols for isolation from sick kids, everyone loses friends.
 
I think its good you are open. You know who your friends arent. It is sad that it is so hard to find and make friends, we - the PANDAS community and really everyone - needs to do a better job of coming together, educating and supporting. There are a few PANDAS families we know who have gone through the illness and recovered but refuse to talk about it, they want to leave the bad memories behind. I can understand on one level, but am super frustrated.
 
Are there any approachable and open homeschooling moms? Most of them are busy crafting the perfect home and their perfect kids. Kids and behavior (yes thats our kids) that gets in the way get the cold shoulder. They may say they are understanding but really don't care, they mainly want to post pictures on facebook of their wonderful adventures, their kids artwork, their music etc.

FWIW, dasu, just to emphasize what llm is saying, in conjunction with the methylfolate, we were told to give specifically the hydroxycobalamin form of B12 and not the methylcobalamin form of B12 for compound heterozygous MTHFR. (I had to order it on-line so we haven't started yet.) Apparently the form matters very much.

We decided to homeschool before we knew about PANDAS, so I am obviously biased when I state that they learn more through home education and unschooling. That said I think the first goal should be treating PANDAS. If PANDAS continues untreated so many things are difficult to impossible - happiness, good social relationships, education, career.
 
You may need to consider pulling them from other activities as well or at least monitoring the health of kids they are exposed to. We did try to integrate them into home school co-ops, extra-curricular activities and sports for both life-enriching and social reasons. Unfortunately they caught coxsackie about 2 months post-IVIG and then were exposed to strep 4 months post-IVIG (but did not appear to get sick) and have been on the decline since that exposure. As we are likely going to need another round of IVIG we will try to be more careful with exposure, particularly for the first 6 months. It is very difficult for them to be robbed of these activities and friendships.

I suspect your son has OCD in ways you do not realize are OCD. I didn't realize my son had OCD. He also has never had strep titers. Turns out it's because he has Lyme disease. If your child does not have strep, look for another infection that is causing PANDAS. It is actually called PANS.
 
Tamar Chansky has an excellent book called Freeing Your Child From Obsessive Compulsive Disorder. That book lead to my realization of exactly what was OCD in my son.

We are/were using enhansa and quercetin for our two. For my son we switched to krill oil as he is sensitive to sulfur. We serve up a lot of garlic both raw and cooked. We are planning to introduce cinnamon, ginger and cloves as well.

Congrats! Thank you for taking some time to document your progress. My kids - only 6 and 7 - know how limiting PANDAS can be and worry how limiting it can be to their future. We want them to live confidently without the fear PANDAS brings so when they ask the "what ifs" we try to gloss over things and talk about all the great treatments and how when one fails another one can be used. It must be apparent to them as they then ask "what happens if IVIG, PEX, Rituximab fail, whats next?". So its nice as a parent to have relate real stories of how kids with PANDAS can grow up and live a full and rich life.

Yes, thank you for posting. I noticed this study didnt originate in vaccimerica.

Yes, thank you for posting. I noticed this study didnt originate in vaccimerica.

Keep in mind that if this is Pandas related, your child has lost her ability to be reasoned with. She has lost cognitive assessibility. When my child was in the thickest grips of a flare, there was NOTHING I could do. Nothing.
 
I switched my goal from trying extract reason or desired behavior to "anti-stress" therapy. Many times this worked.
 
Joint compression therapy worked well: Just below each joint, for example the knee, slightly push the joint in and out over and over, about 10 times. Move onto the wrists, each finger, ankle. I also would gently pull on each finger to create a stretching feel. I would do this with his arms and legs: holding at the ankle (imagine the stretch going all the way up to the hip) With the arms: create a stretching feel by holding onto the wrist and pulling with constant tension. They should feel the pull all the way up to their shoulder. Do this whole body therapy for ten minute increments. Sometimes I would have to do it 3 times in a row....
 
I also did back massages with aroma therapy. Hot baths. Think DESTRESS.
 
With my son, I believe that the dopamine surge was sending him into a fight/flight mode and these kinds of things helped. It would often result in him feeling drowsy from the relief....

DS 14 was 11 when PANDAS hit. He was in 6th grade, what, 3.5 months in? He missed all of middle school, no home school, no online school, no tutoring. He didnt' have 'flares' per se, he just had 1 non-stop long 'flare' that stopped him in his tracks. There was no way he could do any type of schooling and all his social interaction also ceased completely.
Video Games saved his life, period. He's just now gone back to school, into 9th grade, started w/ 1 class and is up to 3 now, will add another next semester. He's begun to swim for his old private club and just was asked by the HS coach to join the boys team (3 weeks into season, he's so flattered) so our new normal is amazing.
Where he's been, I can't hardly believe he's where he is now. He also has been extremely sensitive to all typed of meds, paradoxical reactions all over the place. I wish you the best, it's so hard, hang in and do what you have to do. If it means he plays excessive VG...well, there are worse things. My son is getting an A in Algebra after missing ALL of Middle School math. They didn't warp his brain, I think it saved him actually and there were times when I can say he was completely obsessed, in fact he obsessed about obsessing....but somehow he's made it out the other side.
Wishing you strength, you can get through this and so can he.

I totally sympathize with you as I see the same thing with my kids. Everything is a fight either with us or between themselves. HappinessWe have had a hard time dealing with them for a few years - before we knew it was PANDAS, we think we dealt with minor flare. It seemed like they ruled our lives. Doing routine things around the home consumed our time, and didn't get to work on personal goals that "normal" parents enjoyed. Everyone used to tell us parenting is hard, blah blah blah. Now that we understand that this is pathology and realize we have been struggling it helps us to realize that we havent been bad parents but parents dealing with a bad condition.
 
The symptoms of the children are infectious. We parents take on the anxiety, OCD, anger, unhappiness and regression. Often - as in the flare we are going through now - the parents become prisoners in their own house, shackled with caring for the kids and unable to enjoy time with activities, friends and family. I have had to take a leave of absence from work. (Yay, spending more money on health care whilst making less money!) We become further removed from normal life. Our perspective of reality becomes warped.
 
I have found that my parenting skills decline accordingly and I need to be aware of the need to change up my game. I agree that basic carrot and stick discipline doesn't work as well if at all. Thats usually one of the first things we see in a flare - basic life becomes hard and we spend all our time trying to make discipline work. And then the light bulb goes off: they cannot control emotions and their base urges rule their bodies. Its hard to make discipline work when you are competing with violent fears far worse than any consequence you can deliver. In the worst of exacerbations, it makes as much sense trying to make them behave as it makes sense for someone to make an Alzheimer's patient to remember. But there is also there is also the murky middle ground where we don't know what level of responsibility to expect of the kids, as hrosenkrantz states.
 
OK I am writing too much, as this is a subject that consumes a lot of my mind. The only thing that works for my 5 and 7 year olds is
Reduce expecations Control their environment - reduce stressors, give them things can do well, no exposure to violence or crude movies etc Try not to transfer your stress or anger to them Give them lots of love and encouragement Give immediate rewards. Use negative discipline sparingly, try to use "you are working for X so do Y" Risperdal and Valium, lol.

Hi Beerae,

I don't know what the answer is, but i think you bring up the question that so many of us struggle with, which how much of this can be addressed through "behavioral' interventions, and how much of this is behavior that is immune to these kinds of interventions? I mean, we don't want to let our kids behave in unacceptable ways, but will they/do they even respond to the kinds of response we would give to a non-sick kid who is exhibiting in appropriate behaviors?

Dd9 diagnosed with Pans symptoms since October 2013 is currently in a flair-- acting like a complete BRAT and it's making me crazy! She's always been spoiled, so I do partially blame myself for her behaviors, but she is unbearable right now! Today was her brother's 7th birthday and from the get-go this morning she has been miserable. "I only got 1 present in the morning, why did he get 2?" "I'm so unlucky, I'm having a terrible day". Her birthday was just 4 weeks ago, and I swear, I think if she'd had sprinkles on her cake (she has food issues, so there weren't any on hers!) I swear that she would've counted every one to make sure that she got at least as many as her brother did! She refused to listen to me, or talk to me, or get ready for school this morning. Made me late for work, and stayed home with Dad until he could bring her to school.
 
When she's flairing, she becomes so selfish, and self centered.... Greedy, miserable. I know it's Pans talking, because when she's not in a flair, she doesn't act this way. (A least not to this extreme) -- but she has had issues like this before, primarily around her birthday compared to brother's birthday. It seems like she cant handle it when its "all about" her brother, and not her. It really bothers me, her brother loves her so much, looks up to her, ans is such a sweet, kind and generous boy, and she really comes across like a spoiled rotten, nasty and miserable little snot. I say this with affection mind you, I love my daughter more than anything, but am really sick and tired of these kinds of behaviors. What to do? Consequences don't work, they only fuel the fire. An earlier bedtime (which really benefits her by the way) isn't always possible. Rewards for good behavior don't work either. But I can't just allow her to be like that, can I?
 
I get so angry myself sometimes- And I find myself inappropriately goading her "fine. If you're so unhappy and miserable, than I'll take away all the presents you got, and you won't get anything from me for Christmas either since you're such a miserable and ungrateful girl." And then comes the guilt. And I try to apologize. And she won't get near me or talk to me... Bad situation made worse:(
 
Anyone else deal with this? Any suggestions? Where do you draw the line between brat and "having troubles". ?