qannie47

Some other suggestions.
 
If I had it to do all over again...I would have sat down with chosen doc and come up with a comprehensive set of tests you want to run. You little one is only 3. Get your quantitative set of blood work that you want to run, and do as much of it in one shot. That way you are not dragging her to the doc over and over and poking her. That alone is enough to make anybody unravel. Plus, a Big Picture snapshot will be great.
 
Start slow with chosen supplements. One at a time. Again, I made the mistake of loading my son up with too many to fast and then I did not know what was working and what wasn't. Give each supplement several weeks before you decide if there is any benefit or is problematic. Unless you see an instant highly negative reaction.
 
Test ideas: Strep titers, Cunningham's panel, 23&ME, "The OATS test", Lyme & co-infections, autoimmune work up, blood panel. These tests, for starters, will tell you a lot about nutritional deficits, methylation issues, gut issues, neurotransmitter imbalances, active infections...
 
I am sure others will chime in with other suggestions as well.

The good news is that you are not writing off red flag behavior and waiting for her to outgrow it. Maybe she will, but does not make sense on taking a chance when there is so much that has been learned about behavior and correlations to diet, disease, gut issues, gluten issues, methylation issues, tic born infections etc....
 
When reading your post, you have a situation that could indeed be anything, or a combination of the above. Remember, there are many labels like Sensory Disorder, ADHD, etc. We have all learned here in this forum that while these types of disorders are legit, the most important thing is to find the "root cause". Not for the faint of heart, but doable....
 
This can take time. A lot of time. Would your doc humor you and at least start with a strep titers test for example? See if she has had strep in the past? Remember, many Pandas children are Asymptomatic, so a blood test can sometimes tell a different story. I would start with asking him as well to run some basic blood panels to get a comprehensive peak at her....
 
I also would suggest that you not jump to Pandas....it could cloud your perspective. Rather then trying to prove a certain disorder at this point, I would start with just letting the tests/blood results come in and go from there. Let some of that tell the story.
 
Sensory issues, my son is Hyper-Sensory...your description fits the bill. But again, maybe it is maybe it isn't....get the evaluation.
 
You have your work cut out for you....but you will do it, and eventually find answers that make sense to you. If your doc is not willing to venture down a "search and discovery" approach to your daughter, I highly suggest you find one that will.
 
I currently am a big fan of Dr. James Greenblatt, out of MA. He has a website and some very interesting published articles that talk about the relationship between mood/metabolic issues/gut/nutrition....just to name a few
 
Good Luck!

Some other suggestions.
 
If I had it to do all over again...I would have sat down with chosen doc and come up with a comprehensive set of tests you want to run. You little one is only 3. Get your quantitative set of blood work that you want to run, and do as much of it in one shot. That way you are not dragging her to the doc over and over and poking her. That alone is enough to make anybody unravel. Plus, a Big Picture snapshot will be great.
 
Start slow with chosen supplements. One at a time. Again, I made the mistake of loading my son up with too many to fast and then I did not know what was working and what wasn't. Give each supplement several weeks before you decide if there is any benefit or is problematic. Unless you see an instant highly negative reaction.
 
Test ideas: Strep titers, Cunningham's panel, 23&ME, "The OATS test", Lyme & co-infections, autoimmune work up, blood panel. These tests, for starters, will tell you a lot about nutritional deficits, methylation issues, gut issues, neurotransmitter imbalances, active infections...
 
I am sure others will chime in with other suggestions as well.

Hi Kari. Yes, your are very right. Everybody responds differently. First, to set your mind at ease, yes, some have what I like to think of as a "steroidal effect". An instant positive response. IVIG contains steroids. The immediate response can sometimes be an instant cesstation of symptoms because of the anti-inflammatory effects and the shutting down of the immune system. Here is the important part: This immediate response, it only last about 3 months. My son indeed responded "instantly", but I had to learn that the "big picture", the "important" aspect about what IVIG is that is matures the immune system. That takes time. A year or so. We were about 9 months out where I really saw the cumulative results.... So don't give up. Actually, the fact that he is not having huge negative reactions may be a good sign....
 
Best Regard

After reading this, much of what I wondered about seems clearer, yet I still don't get how a hospital can Veto a very prominent doctor's doctors from
Tuft. That has yet to be explained. Despite the fact that the Pelletier's lost there cool and lead with their broken hearts and anger, there is no excuse for the clear abuse of power. Yes, it seems that her parents angered a lot of people. Still, it does not take a rocked scientist to understand why these parents would have moved to such an emotional/reactive state of mind. From the way that this case was handled from the beginning, it set the parents up to lose...Who would not have reacted with such rage to have a child torn away from them in 24 hours...It seems to me that this has turned into a Pi######ing match. I don't think that the judge, hospital, appointed guardians, or dcfs have Justine's best interest in mind at all. What we have here are powerful egos whom seem bent on playing their powerful hand.
 
I have encountered individual's whom's best defense is a great offense. These people play with your emotions. They are experts at pushing buttons in order to elicit high emotional charges...That way they can say that your crazy....
 
This is all just so sad.

At the risk of being a lone wolf and I know this is a sensitive topic, I would discourage anyone from considering not vaccinating their child. as far as I am aware the doctor that claimed he found a link admitted it was completely made up. He lost his medical license. I really urge people to read the research including the publicly available vaers data and read it with a critical eye tk really see if there is a direct causal link. When I studied the data the only vaccine I saw that truly could be directly linked to serious side effects outside of allergic reactions occurring immediately after administration is the menactra vaccine for herpes which I will never allow my children to get. Children and adults are now dying of eradicated diseases such as measles and whopping cough, deaths that were preventsble. I do think there is merit to spacing out vaccines. Tylenol on the other hand I believe has had some studies showing possible causal links. There are other causes that need to be explored. Food additives etc perhaps even the proliferation of devices. How many toddlers do you see glued to iPhones? Gluten etc. my daughter was erroneously under vaccinated by my former pediatrician and contracted what thankfully was a mild case of whooping cough. It was beyond horrifying and it is so concerning to me to think if babies getting whooping cough, measles etc.

Taken the right way, I think probiotics make it past the acid....I do use probiotics for my son whom is a little on the odd side of the fence and I have seen wonderful benefits with mood improvement. I have also used probiotics to assist with more immediate issues in myself and family members on several different occasions: stop loose stools from the stomach flu, aide in digestions, all with instant results every single time. If they could not get past the acid, they would have been of no help at all.

Hi Cara,
 
I have one PANDAS/PANS son and one non PANDAS/PANS son. They are 2 1/2 years apart. When you have a PANDAS/PANS child it changes who you are and how your perceive things. I look at the world differently. I monitor the children in the school, the grocery stores, and at sporting events. It's a hyperactive awareness that is actually quite necessary to remain vigilant in this journey against these types of issues.
 
So I would have done exactly the same thing as you and completely freaked out! In fact, I have been tempted to diagnose my younger son because there are days that he is off kilter. Days, that he does something strange or says something concerning. Lately he's been walking around shooting pretend basketballs. He's always practicing his "moves." I thought, "oh no!" Then I realized he's just being a kid and half the kids on the street do this.
 
When they are sick, they can act even more strange. And they are indeed little sponges that can read your emotions. While you can express yourself through words and writing - they can't. They have these intense emotions, and have no idea what to do with them. He's 6 and he's been sick. He knows you are upset with the situation regarding his brother. He was also punished (and spitting on the mirror was impulsive? or was that because he didn't like himself? - which came first?).
 
I would absolutely monitor things because studies do show a likelihood and he has strep. But I would remain calm also. They are going to go through a lot of stages and ages and a lot of changes and weird behavior and high emotions. Not everything is PANDAS. But do stay on the look out. I might also make sure that he DOES come to you with unusual feelings. He's got to be able to talk to someone so that he can process these thoughts.
 
I imagine the stress level for him is also fairly high. I wonder if he feels "bad" because he brought home the strep. Kids can overhear things or sense things even when its not said aloud. He's just six and might be feeling really mixed up about all that is going on.

Hello guys & gals. I have not been as active on this forum in terms of posting because our ds is doing so well.
 
I thought it was important to share just how well my ds has done since his T/A. I know that there is some controversy amongst the Pandas docs regarding the necessity of a T/A for our Pandas kids....
 
My ds had his out 12/30/13. I am stunned at how well he has done. To date, he has had 1 small flare about 4 weeks ago. To my amazement, the flare was minimal. The only symptom I saw were the hyper-motoric movements. Within 12 hours I did not mess around and I put him on full dose abx. Within 24 hours I saw the movements subside and he went back to his normal baseline. Remarkably, emotional volatility ALWAYS accompanied his flares. This time they never appeared.
 
What has really made my head spin is that since his t/a, my son has been self reporting that he feels better. I never told him that we were doing the t/a for his Pandas. I did not want to plant any seeds or cause any anxiety in him to perform. Since his surgery, for the 3rd time he has said this to me. "Mommy, ever since winter break, I can focus better in school and I can follow the rules better. I also like school again mommy". I responded, "Why do you think that is ds?". he replied, "I don't know, maybe because winter break was so long that I think I got all my energy out". I truly find this astonishing. I have also heard him refer to the timeframe "WHEN" he had Pandas.....as if he feels its gone. Interesting.
 
I have truly seen my child heal to another level. I do not think this is a coincidence.
 
Just wanted to share in case anybody is considering a T/A.
 
 

Hello guys & gals. I have not been as active on this forum in terms of posting because our ds is doing so well.
 
I thought it was important to share just how well my ds has done since his T/A. I know that there is some controversy amongst the Pandas docs regarding the necessity of a T/A for our Pandas kids....
 
My ds had his out 12/30/13. I am stunned at how well he has done. To date, he has had 1 small flare about 4 weeks ago. To my amazement, the flare was minimal. The only symptom I saw were the hyper-motoric movements. Within 12 hours I did not mess around and I put him on full dose abx. Within 24 hours I saw the movements subside and he went back to his normal baseline. Remarkably, emotional volatility ALWAYS accompanied his flares. This time they never appeared.
 
What has really made my head spin is that since his t/a, my son has been self reporting that he feels better. I never told him that we were doing the t/a for his Pandas. I did not want to plant any seeds or cause any anxiety in him to perform. Since his surgery, for the 3rd time he has said this to me. "Mommy, ever since winter break, I can focus better in school and I can follow the rules better. I also like school again mommy". I responded, "Why do you think that is ds?". he replied, "I don't know, maybe because winter break was so long that I think I got all my energy out". I truly find this astonishing. I have also heard him refer to the timeframe "WHEN" he had Pandas.....as if he feels its gone. Interesting.
 
I have truly seen my child heal to another level. I do not think this is a coincidence.
 
Just wanted to share in case anybody is considering a T/A.
 
 

The trouble with the first point is that often blood counts are not significantly out of the normal range, or at least not enough to raise a red flag with most doctors.
 
Throughout treatment DD's lymph's were always a little low, but not much. Only at one time did her CBC indicate very low a WBC count (her sample was taken while she had the flu) and the LLMD called us in a panic, saying to stop all abx, thinking it was a drug reaction. It wasn't, it was the flu and all parameters returned to normal after she recovered. A very low CD57 has been our only indication that NK cells are being impacted, and most doctors don't test for that.
 
I have gotten to the point in this ordeal that I believe I can do a better job at treating DD with herbs and other more natural treatments than I can with continued abx. Our LLMD knows little about herbs, and so after reading through Buhner's books at least once (a few more times would be good), consulting with his associate, and bringing aboard a ND versed in Traditional Chinese Medicine, I am comfortable with my decision to forgo conventional medical treatment. We continue with regular CBC/CMP testing through the LLMD.
 
DD continues to heal, improving by adding herbs that Buhner suggests for viral/protozoan infections. We have never tested for viral infections and tested negative for babesia (a protozoa), but I have found another answer to our puzzle.
 
When you run out of tests, or money or which ever comes first, you realize that you can only count on yourself and your ability/willingness to investigate alternative options. Some work - start slow, record every reaction - you may find a way out.
 
There are so many potential explainations for the impacted immune systems of our children:
High level EMFs disrupt our bodies electrical systems causing added stress.
Pesticides destroy the gut symbionts responsible for much of our immune system.
Vaccinations, well don't get me started on the potential causes for harm.
 
It's not just infections causing our kids problems and it's not just abx/antivirals that are going to fix them. We have too look outside the allopathic box too.
 

Well, the fact that your other child has Pandas dx definitely raises the red flag. Definitely keep a close eye on him, but don't panic yet... I assume you are treating the infection, so this definitely buys you the time to observe...Also, I always look for the hopeful, and reasonable explanation when it comes to abrupt, odd behaviors in my kids. That being said, I am hoping for you and your son that this is him being 13, with hormones flying, and I am wondering what that "something happened" could really be...hmmm...if you follow my lead. Being 13 and hormonal also has the capacity to make any well rounded child look "off", and feel "off" in many ways.
 
Truly not undermining your concerns because I get and respect that any Parent whom has been thru Pandas needs to be mindful....just hoping for you and yours that this is just good old fashion puberty.....
 
Keep us posted.

if abx changes her asd symptoms, I would run to Latimer.
I would NOT however, introduce my child as ASD with possible pandas. I would start with grimacing and the effect abx had on her, with a recent tick bite. If you start with ASD, you might seem like yet another mother too hopeful for her child with autism -- I am quoting what I heard from two PANDAS drs, said with a very disparaging tone.

ibcdwc: I don't know that I agree with being incorrectly diagnosed. As the research evolves, we can see that there is a lot of overlap between all of the disorders that fit within the spectrum. Perhaps, as more research is done, the labels will change...leading to a clearer picture where many of the psyche disorders overlap, unique onto themselves, but have the same common denominator of immune/gut origin.
 
Over time, as I have researched Pandas,and related disorders.... I keep coming back to immune, gut, methylation.....I think this is the elephant in the room that will eventually change medicine, and change lives forever....

http://abcnews.go.com/Health/anxiety-head-gut/story?id=20229136
 
Yes, we will all smile and say..."well isn't that interesting".

http://abcnews.go.com/Health/anxiety-head-gut/story?id=20229136
 
Yes, we will all smile and say..."well isn't that interesting".

If you read our DD's symptom time line in my signature, you will see that she developed oral apraxia at 15 months, after her first MMR vaccination. She lost all speech, which at that time included 2-3 word sentences. At the same time she also lost fine motor ability and started toe-walking and raging as well. She was dx with oral apraxia at age 3.5 and was helped immensely by a Speech Language Pathologist using the PROMPT method along with lots of practice. PROMPT worked like a charm - she said her first word in 2 years after the first session.
 
PROMPT is an acronym for Prompts for Restructuring Oral Muscular Phonetic Targets. The technique is a tactile-kinesthetic approach that uses touch cues to a patient’s articulators (jaw, tongue, lips) to manually guide them through a targeted word, phrase or sentence. The technique develops motor control and the development of proper oral muscular movements, while eliminating unnecessary muscle movements, such as jaw sliding and inadequate lip rounding.
 
http://promptinstitute.com/index.php?page=what-is-prompt3
 
I'm not sure if this method is available in your area, but it would be worth investigating.
 
DD has always had difficulties with motor delay, and doesn't pick up new movements easily. I had to push her on her tricycle for years because she couldn't make both feet peddle at the same time and in the same direction. One foot would always be applying the break. But I find that when she finally grasps a movement, she will then be good at reproducing it. She rides a bike like a fiend now!
 
With DD, I have had to literally teach her every fine hand/finger movement (writing/colouring, throwing/catching, scissor work, using a ruler etc - this took some intense OT), every foot/leg movement, and every facial/mouth/tongue movement. She couldn't blow out a candle until she was 10, nor could she spit. PROMPT helped with this too.
 
With PANS flares she would frequently lose handwriting, and sometimes the ability to even hold a pencil but she never again lost speech. She now talks my ear off , and has essentially lost all of her diagnoses, including Aspergers, Tourette's and ADHD.

Mental Illness is a symptom, not a disorder in my humble opinion. That is how psyche symptoms should be addressed.

Year 4 – a look back
 
Every year I have posted a list of reflections, things I have learned through the previous year’s fight and struggles. I have found that each year it has helped me to be able to reflect on how far we have come, as well as to revisit the previous year’s reflections to keep perspective on where we have been.
 
I have found it helpful to even look back at each year's post to see just how far we've come - Our First year: http://latitudes.org/forums/index.php?showtopic=12108&hl=
Second: http://latitudes.org/forums/index.php?showtopic=16245&hl=
Third: http://latitudes.org/forums/index.php?showtopic=19517&hl=
 
And here are my reflections for the 4th year of our journey:
 
I have often dreamed of “life after PANDAS”, I learned that there is no such thing. While my children are well on their road to full recovery, our lives have forever been altered by PANDAS, and there will never be a day where PANDAS does not cross our minds, or lips. While knowing that “life after PANDAS” is a fantasy, I learned that I can use the impact PANDAS has made on our family to help others by sharing our story, experiences and support to those who have come after us. Hopefully, they will not take 4 years to find the healing we have this year. I learned that fear may cause us to doubt our best instincts, but the support of kind strangers who have become “virtual” friends over the years, those fears can be conquered. I’ve also learned that the unwavering support and advice of those friends can only carry me so far. I am their mommy, and only I can decide what is best for my children, no matter what anyone else says, even with the best of intentions. Our instincts as parents – no mater how scary - are still the best weapon we have to help our children. I learned that even the most fierce mommy advocate can get it wrong sometimes too – IVIG has been a game changer for my kids, and I regret being too afraid to try it for my son sooner. I learned to never underestimate PANDAS – just when you think you have it “under control” – it pulls the rug out from under you. Again. I learned that as we travel farther down the path to recovery, the setbacks seem greater – even though they are comparatively minor compared to the through which we had previously passed. I learned that even after living with this for 4 years, even those seemingly minor setbacks will still break your heart all over again. I learned that I am not the same person I was 4 years ago when I started this journey. The hopes, dreams and goals I had for myself, and my family, back then are hardly recognizable to me anymore. I’ve learned to embrace the woman I am now, and realize the hopes, dreams and goals I have now, while different, do not represent a failure of what I envisioned for my life, but a growth that comes from naturally giving yourself over to your family, and God, in ways those who don’t face challenges may never understand.  

I just logged on after months of being away to post our upcoming Salem Support Group, saw this post and thought I'd take this opportunity to respond to your question and update people on where we are. I don't recognized some of the new names and I'm sure you all may not recognize mine!
 
Anyway, like LLM's, our recovery was saw tooth. Thanks to LLM and others on this forum, I think ours was quicker than hers (3 years). We started out with the OCD that became apparent over the course of a few months (not overnight) and eventually debilitating. It took us about 6 months after visiting the pediatrician (who wanted to put my 7year old on Celexa) and a negative throat culture, to head down the PANDAS path. What convinced us to go that route was her eventual Cunningham study results of 189 Cam Kinase and positive strep titers. We saw Dr. B and after six months of Zithromax, we had our daughter back to about 90% of baseline. She then took a nosedive back down. Six months of experimenting with different antibiotics and steroids under Dr. B's care we eventually discovered Bartonella (a tick born illness). Dr. B. referred us to Dr. J. We eventually discovered Lyme as well. Treatment for Lyme and Baronella lasted another two years. Like LLM said, it was 2 steps forward, one step back. Herxes were intense at first. They were also cyclical (i.e. one time the OCD would get really intense, the next time the depression, etc.) But each time, she would come out stronger than before the herx. Eventually the herxes were just annoying and pretty brief. We finally felt she had been well long enough last March to taker her off antibiotics. She's continued to do well, even though we know the Lyme is still there (based on a Lyme culture test we did after she was off antibiotics for 3 months). The only lingering issue is some reading comprehension. But who knows, that may have been there anyway.
 
In some ways it's hard to say whether she is a baseline or not. She's almost 12 now, starting puberty. This all started when she was 7. What is recovery? What should baseline look like? All I know is I have a happy, active daughter with no signs of the OCD, ADHD, depression or rages that appeared when she was 7. I'll take it! (Even though I was extremely frustrated this weekend with the amount of screen time she keeps sneaking and the messes she and her friend keep leaving all over the house!).
 
BTW, we also figured out her older brother and I both had Lyme as well. My son just stopped his antibiotics last week. I stopped about 6 months ago. We're both doing ok. (unless, of course we count my irritiablity this weekend ).
 
Anyway, even though I am not on the forum that much anymore, I am always more than willing to email/talk with anyone that has questions about our experiences, what helped, etc.
 
Kara

Our older son was neurotypical until PANS at age 5 1/2. He was only on antibiotic once prior PANS at age 4. Strep, annual vaccinations and a virus all in a three week period triggered his cascade that lead to PANS. He too had multiple issues: chronic infections/viruses: Lyme, Bartonella, Babesia, Coxsackies, HHV6, yeast, biofilms, heavy metals, mold, vitamin/mineral deficiencies, methylation/detox issues. We did not find anyone thing to be the panacea with regards to treatment however all of it added to his overall successes.
 
To most he appears to be a perfectly normal child. To us, he has maintain a 90% baseline or better for the last couple years. His symptoms today are predominately physical in nature: not feeling well, headaches, etc. If chronic infections like Lyme is involved it can be a long rocky road to recovery. We believe he will 'now' live a normal life. I learned way more than I cared to about medicine. It can be a full time job but we have 3 sick children.
 
Things that help us get to where we are with older DS
3 HD IVIG - Responded well but could not maintain recovery then discovered chronic infections Steroids - Helped but since he is dealing chronic infections we have not used them since initial onset Testing extensively for chronic infections/viruses Combinations antibiotics Understanding his methylation issues, detoxing abilities Yearly comprehensive stool analysis Yearly vitamin/mineral/amino acid testing (now testing every 6 months) Addressing gut issues as best we can while on antibiotics IV vitamin/minerals Ozone Therapy - We feel this has really gotten at the biofilm issue Healing time I am sure I left a few things off the list. One thing we did not do was remove his tonsils.

I also no longer expect my dd to never have a more complicated emotional life than a completely healthy neurotypical child,
a child who never had PANS.
However, my dd was seemed to struggle more from birth (colic.)
We were never 'normal, 100%, then woke up a different child.'
Having said that,
we are no longer in debilitating, dark days,
she behaves 100% beautifully in her typical 3rd grade public school,
and has no accommodations.
We no longer treat her medically for infections,
or prophylactic.
It is not easy. She can 'pass' in the outside world, so far.
But there are issues.
We are taking it one day at a time.

http://www.joanmathewslarson.com/HRC_2006/Depression_06/D_roller_coaster.htm

Tumeric. There is a thread here somewhere about what a wonderful anti-inflammatory it is. Here is my thoughts on "true adhd" & "pandas adhd": When I think of my pandas child, when in a flare, his is adhd thru the roof. When not in a flare, he ranges from the model perfectly calm, focused child to mildly high-strung, but able to be easily refocused. Then I think of my nephew, age 21 is was just diagnosed with Bi-polar about a year ago. When you compare their symptoms when each is having a problem, THEY ARE IDENTICAL. So. My nephew is not dealing with Pandas, and my son does not have Bi-polar. The etiology of their own specific disorders are different, yet the outcome is much the same. I am staring to think that the term ADHD should no longer be listed as a disorder, but more considered a symptom....I can think of so many ways in which ADHD expression bleeds into so many other disorders, and yet the dx is not ADHD. If in fact there is truly such a thing that stands alone..... p.s son and nephew are not blood related.

story seems unbeleiveble, http://www.cnn.com/2014/01/18/health/fish-oil-recovery/
what's even more strange is that this appears not to be the first case.
i am positng it here since, in part, PANDAS healing involves recovery of certain parts of the brain.
we've been on fish oil (w/out mercury) for as long as on abx.