PANDAS/PANS LIFE 2.5 years Post Initial Onset

Yesterday was P.A.N.D.A.S Awareness Day, October 9th 2016. As usual, life caught up with me and I did not get to write my promised yearly update on our PANDAS situation...better later than never right?  First, before I get into the last year, and our current treatment and situation I want to give a brief explanation of PANDAS/PANS. Please read my first few blog posts before this if you haven't, so that it can give you an idea of what PANDAS is, and an insight into our story or it may be difficult for you to follow along here. First off:


WHAT IS PANDAS?

PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) occurs when strep triggers a misdirected immune response results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating, and more.

PANDAS Network estimates that PANDAS/PANS affects as many as 1 in 200 children.

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PANDAS CRITERIA

The hallmark trait for PANDAS is sudden acute and debilitating onset of intense anxiety and mood lability accompanied by Obsessive Compulsive-like issues and/or Tics in association with a streptococcal-A (GABHS) infection that has occurred immediately prior to the symptoms. In some instances, the onset will be 4 to 6 months after a strep infection because the antibiotics did not fully eradicate the bacteria. Many pediatricians do not know the latent variability of strep – Rheumatologists and Streptococcal Experts do.

When strep cannot be linked to the onset of symptoms, the NIMH states one should look into the possibility of PANS (Pediatric Acute-onset Neuropsychiatric Syndromes).

The acute onset means a Y-BOCS (Yale Brown Obsessive-Compulsive Scale) score of >20 and or a Chronic Tic Disorder YGTSS (Yale Global Tic Severity Scale) often with multiple tics. Below is the symptom criteria for PANDAS. Additional symptoms may be present.

PANDAS has an encephalitic-like onset. Some childrens’ onsets are clearly debilitating and they become near catatonic and homebound. Other children can function at school and then fall apart at home for hours on end. BUT IT IS CLEAR – THE FORMERLY NORMALLY FUNCTIONING CHILD IS GONE.

PANDAS symptoms may have flared in a lesser manner for weeks or years prior to the acute onset but often readily disappeared or lessened over time. If untreated with antibiotics generally we have seen a myriad of other symptoms will intensify in the weeks and months post-acute onset. If the severe symptoms do not stop and persist over many months, permanent cognitive damage can occur.

PANDAS children may have moderate to dramatic improvement with antibiotics within one week of treatment, however, further interventions may be needed. How to stop the entire syndrome is still debated, but many parents and doctors report prolonged antibiotics (two months to one year) and/or IVIG (intravenous immunoglobulin) treatment or plasmapheresis.

Source: http://www.pandasnetwork.org/understanding-pandaspans/what-is-pandas/

So, the question of the year: Do we still deal with PANDAS? Is Scarlett cured? Many people ask this, since they see my "beautiful and seemingly perfect.." life on social media. Don't we all try to make our lives on social media look as polished and awesome as we can? I mean come on....who wants to post videos and photos of their child in pain, struggling or even complain on the internet about anything? Besides the current ridiculous presidential campaign....I for one opt to just show our happy and good side and try to keep it positive. I use social media as a way for family from far away to somewhat know my children, and to keep in touch with old friends I may have not seen in forever. It is nice to see their faces on a daily basis also...but I must pose the question...do we REALLY know what is going on in the "real" lives of those we love but are so far away from? I think not. And that is why I write this honest, and open blog for those who may be struggling with something similar, and just to "keep it real," as my commitment for PANDAS awareness day on October 9th every year, and as an update and with the hope that this may help someone along the way. As painful as it is to open up about it again, I think it is important in finding solutions for this condition that can be devastating to some families. 

What is life like for us now after 2.5 years since Scarlett's PANDAS diagnosis? MUCH improved, and I can honestly say we have an amazing, blessed life with much fullness and happiness. We have traveled a lot, laughed a lot, had our ups and downs but most of all...we have been happy and HEALTHY minus a few hiccups! We work hard, play hard and most of all love a lot. When it boils down to it, life is really really good and we are very blessed and fortunate. Regarding PANDAS there has been MAJOR improvements, and for our situation we have really figured out how to MANAGE PANDAS in particular as best as we can. 

Although I hate the labels...because a person is SO much more than their diagnosis...Scarlett has been given a combo of ADHD and PANDAS/PANS. In the past she was diagnosed with high functioning autism, but that diagnosis has been "rescinded" because she is too social now for high functioning autism.  Although she has features of someone with high functioning autism, she rides the line of barely on the spectrum.... to ADHD/sensory processing disorder and PANDAS/PANS.   Is Scarlett fully healed? Unfortunately the answer is NO. I thought we were, I really did. PANDAS has not played a part in our daily life, and is not something I have even had to worry about on a weekly basis for quite some time, besides our basic managing protocol of treatments.  Last year in July 2015, both of my daughters had their tonsils and adenoids removed after THIRTEEN bouts of strep (all of which brought on flares). The T&A seemed to be a miracle in itself. Since the T&A last July our family has adjusted to a "normal" diet (not gluten or casein free). Within the past year...we have literally had ONE illness which caused a minor flare. What is the secret you may ask? TREATMENT, constant preventative treatment.

TREATMENT from July 2015-July 2016

Scarlett was treated ALL year, besides summer where we went on some vacations and majorly let things slide.

 1) Although we chose not to stay GF and CF (which is extremely imperative for initial lowering of inflammation) I did discontinue to buy foods with dyes, and almost no preservatives, and no GMO's. We eat as many fruits and veggies as we can. Right now for the past year, we have been focusing on the nutrients we NEED vs. constantly worrying about what NOT to have. Don't get me wrong...GF and CF was an essential part of the healing process for us. We may even be going back to it soon (will write more about that soon). But for now, we eat as healthy as we can to keep Scarlett's immune function going. We also avoid as much refined sugars as possible (sugar breeds bacteria) and food dyes.

2) Scarlett receives a penicillin bysillin injection per recommendation every 3-5 ish months from her doctor. Why do we use an injection? To bypass antibiotic damage to the gut. This is as needed, and if we for-see any "behaviors" happening, and is completely regulated by her doctor.

 3) Scarlett has been on the following supplements (we did get very lax in the summer but other months full force): multivitamin, Vitamin D, Vitamin C, fish oil or Omega 3's, probiotics, biofilm (as needed), and as needed-NAC, inositol, elderberry, fiber. We also use some essential oils and herbal remedies every now and then.

4) NO more vaccines. Scarlett's case has been reviewed by 5 separate doctors/pediatric neurologists ALL who have recommended no more vaccines. Immuno-compromised children should NEVER be given vaccines. This was a hard pill for me to swallow, always have been pro-vaccine before we experienced PANDAS. Scarlett's levels of aluminum, and mercury were high... indicating that vaccines had played a role in her immune function damage. She also had vaccine "failure" as confirmed by 3 separate doctors per extensive bloodwork. She has been given a life-long medical exemption from all vaccines from her doctor who is a specialist in Autism and PANDAS. If you do not agree with this stance, and think I am "irresponsible" as a parent for no longer vaccinating a child that cannot tolerate the toxic ingredients in vaccines.... you can just stop reading now and move on with your life. (PS. If you cannot tell... this has been a sensitive topic that I feel I have been unfairly criticized on by certain family and friends and I will no longer tolerate it.) Thank you for your respect and understanding.

5) A lot of play outside. Scarlett plays in the dirt a lot. Call me crazy, but the more she plays outside and gets fresh air, the happier and healthier she remains.

6) Limited screen time. I'm not saying this has played a part in healing her immune system...but it surely remains a part in healing her mentally. Kids that have any kind of past OCD or OCD type tendencies should be limited with screen time. And not just kids with OCD issues...ALL kids would benefit from limited screen time. We do drop the ball during the weekends, but typically no more than 30 min one to two times a day (which is still a lot).

7) A LOT of life skills discussions together. Scarlett, her dad and I spend alot of time talking and learning about how to behave in certain situations. For example, how to be empathetic towards people, what kind of emotional reactions are appropriate in certain situations. How to overcome separation anxiety if she is feeling it coming on, or OCD or even tics. I could get into a lot more here, but we play a large role in basic type of constant teaching moments as I am sure most parents do anyways.


So enough to say that this year has been a GREAT, great improved year for us and for Scarlett. She had one mild flare and we nipped it in the bud quick. For 90% of the time she is a normal, happy and healthy now six year old child. We love her immensely and are so very grateful to have her in our lives.

 After summer, the fear of fall and weather changing seasons started to make me a little nervous. Going to public school for the first time, and being exposed to all of those germs surely had me nervous and left a sick feeling in my stomach. The first week of school was awesome. No problems at all, Scarlett loved it. Went on the bus, happy and healthy and an excited little kindergartner. It wasn't until week 2 I started to notice some things that were concerning. My sister in law was in town (of course it has to happen when family was visiting for a vacation) and Scarlett started to act strange. Super hyper, did not want to go to school (separation anxiety) and I noticed her behaviors changing from a pleasant sweet girl to a hyper, un-ruly kid that would not listen, and was acting slowly, but surely different. After a few days of noticing her acting different, I tried to shrug it off as nothing. I was trying to not let my fears get the best of me, and think positively remembering that it could just be the change of schedule, going back to school, having guests in the house all at once etc. But I was wrong.

Trying to get her on the bus a few days in to our guests being in town Scarlett had a full on separation anxiety panic attack. As she cried and screamed while Justin tried to drag her to the bus stop I could see it written all over her face....a horrific look that meant one thing: PANDAS was back. A whole year with almost nothing and BAM. There it was. I sat her on the steps of our front porch while she sobbed and all the sudden green snot was oozing out of her nose. She had been sniffling a little but I had brushed it off as nothing. She obviously had a head cold. And if you understand a kid with PANDAS, you would know that green snot equals infection which equals possible brain inflammation affecting the basal ganglia...and for my child causing PANDAS, complete behavior changes. That day I let her stay home and we went whale watching. She was hyper, and definitely difficult to deal with that day on many levels. It was a few nights later we tried to go out on an adult date and leave the kids home with a babysitter they have been with for a few years and know very well. Again, she freaked out full blown separation anxiety with me leaving. Deep down I knew it was PANDAS, but damn it... after a year of success I just could not accept it. Denial. Next morning while I was feeding the girls breakfast Scarlett was in the corner trying to hide. She was obviously doing something she did not want me to see. I went over and she was picking/pulling  at her eyelashes. Trichtollomania is a form of OCD and often comes out in certain kids with PANDAS. I have not seen this behavior in over a year. I quickly mixed up a drink with some inositol and NAC...those are the two things in the past that helped with trich. Since then (and that has been about 3.5 weeks) we have been struggling with what I see as a FUNCTIONAL, mild but definitely a PANDAS/PANS flare. We administered a penicillin bysillin injection 3 weeks ago recommended by our doctor at home. We changed and added some  extra supplements.  He also wants us in the office once a week for 6 weeks straight doing glutathione IV's to help boost her immune system. During the past 3 weeks I have not allowed Scarlett to miss school. She seems to have this lingering head cold combined with allergies. I honestly cannot tell the difference. I believe it to be more allergies or histamine related, and kids with PANS can have flares when histamine levels are rising. The infection side of it seems to be gone as of the last week. We took her to the pediatrician who confirmed through a swab, culture and blood work that she has no strep going on. A combination of a cold, allergies, and change of schedule with back to school jitters has caused this livable but still exhausting flare up of PANS/PANDAS symptoms. Scarlett has been suffering silently with tics for the past few weeks (including an eye rolling one and also mild facial tic), and can barely focus and is experiencing major ADHD symptoms. With soccer (something she normally loves and dominates in) she can barely play she loses focus so quickly. A doctor has recommended a mild dose of ritalin for her ADHD...but I am not ready to put my six year old on a medication like that, even a low dose. I am hoping through other natural methods we can overcome the attention issue. Many of her OCD obsessions with strange things are back as well. She seems to be playing great with her friends despite ignoring them half the time when they say her name (not ignoring just attention issue..not hearing) . She had a straight week of severe separation anxiety going to school, but once her head cold cleared up and she started to get a routine and pep talk, it is getting much better. We are sticking with it.  I am trying to stay calm and at this point just do all that I can to treat her and listen to her doctors. We go back for her second glutathione IV Wednesday. I really do believe that I have seen a difference in her since she had it last week. She is telling me that she is feeling much better, and no more kicking and screaming going to school, tics are dissipating, OCD is going down. Attention issues still remain. The separation anxiety looks to be fading. We have also been rehearsing a routine on how to go to school and what to do if she feels "scared to leave me" (which is her way of describing how it feels). I felt extremely terrible as a mother pushing her on the bus and forcing her to school during a flare, but honestly it felt like the right move, and with alot of advice from other PANDAS parents I decided to stick to my guns and make her go. I am in close contact with her teacher, who reports that once she is in the classroom and in her routine she is doing great besides her constant "drifting off." She is likely bored in school, so the teacher is giving her more challenging work (this girl is crazy smart) and also allowing her to color in her notebook I send with her if she finishes tasks early.  If she was contagious and really sick I obviously would not be sending her. Other than that, Scarlett on the outside and inside is her same beautiful, amazing, smart and happy, silly six year old that we all love.

She is getting stronger and stronger and overcoming her fears of leaving me. She is learning to control her tics, and asks for her supplements even because she knows how much they help her. We also started an herbal remedy called "tic tamer" that seems to be helping her a ton. We have a daily morning, afternoon, and evening prep talk saying: "WE NEVER GIVE UP. NO MATTER HOW HARD SOMETHING IS, WE KEEP TRYING." This is our motto. If she is struggling with listening in soccer, we take a break and we say the words and she gets back in a keeps playing. Before school, we say the words and she is getting on the bus with a smile. Constant positive reinforcement. My neighbor also gave me a piece of good advice that I have been holding on to: do not let her sense or see my anxiety. (Because trust me... holy shit is it there! Talk about PTSD from dealing with a kid that isn't even SEVERE PANDAS! ) But instead, I remain calm, and continue to remain a strength of positivity and hope for her. The best gift I can give my daughter (besides her treatment)  is unconditional love, positive reinforcement, and to embrace who she is inside and out, and let her be who she is, which is perfect. Does this mean I am a perfect mother without flaws and weaknesses? No. Does this mean I don't lose my temper, cry, get angry or get frustrated or feel hopeless? No. But we live by the motto "WE NEVER GIVE UP. NO MATTER HOW HARD SOMETHING IS, WE KEEP TRYING." Hoping that this 3 week flare up is on it's way out and after over a year of nothing until now...we are keeping the faith, praying and staying strong and treating her with the guidance of her doctor to keep her immune function strong.

This is all I have to say to PANDAS:

Bring it on PANDAS. Because no matter what, no matter how many times it comes back, we will never give up, we will only get stronger. Eventually, this will not be apart of our lives, and I hope that on my update next year there is nothing to report but a healthy happy year.

Please feel free to check out any of these URL's to educate yourself on PANDAS, which I believe will be a diagnosis as common as autism in the next 5-10 years. Remember that all kids with PANDAS/PANS present differently and some are mild, some moderate and some severe. No matter the level this affects the families involved, so please show your love and support to them, even if it is hard to comprehend.  Please feel free to share this, and I am more than happy to answer any questions. Also, please note I am not a professional writer so please excuse typos/spelling errors, and I am also not a doctor or medical professional, but I am knowledgeable to an extent, and happy to share what has worked for our family. Also below you can find (last link listed) a list of PANDAS/PANS specialists for your area. Thank you so much for reading, and for your support.

http://www.pandasnetwork.org/understanding-pandaspans/what-is-pandas/

https://en.wikipedia.org/wiki/PANDAS

http://www.pandasnetwork.org/

https://www.nimh.nih.gov/labs-at-nimh/research-areas/clinics-and-labs/pdnb/pandas-frequently-asked-questions.shtml

http://pandasnetwork.org/wp-content/uploads/2016/04/2015-PNETWORK-fact.pdf

http://www.pandasnetwork.org/research-resources/pandas-physicians-network/

Our one on one dates are super important!!!! 

Scarlett is always so pumped for her birthday party, which was at insectropolis this year...all about bugs...eeekkk!! I hate bugs so much, but I endure it for her.

Soooo much different, yet so much alike these two are best frenemies!!! Oh, and meet "firebolt" the gecko that Scarlett takes very good care of and has been a huge part of her life in many different ways.

 Our family is the core of our happiness. 

Scarlett in her "zone" or element. 

A lady and an athlete all at the same time!

This girl eats like a rabbit. She loves her daily avocado! She knows how important quality nutrition is for her health and well-being.

One of our cats, Pumpkin is also a huge part of relaxation and love for her.

"Girls can do anything!" Trust me..especially this one. 

Jesus Christ and our faith is the center of our home.

 Daddy giving a pep talk before the bus comes on the first day of school. Many more have followed since this day from us both.

Strength

Scarlett and our family first day of kindergarten.

Invisible Disability...Not Something to Ignore! PANDAS/PANS Awareness Day 2015

As I start to type this, I am tired. Actually, exhausted is a better word for it. I decided since it is PANDAS/PANS day I would finally update my blog and spread some awareness and insight into a often debilitating condition for children called PANDAS. This is my contribution for spreading awareness, and my hopes are that it may help someone in need of answers and insight.

Last year in March my oldest daughter Scarlett started to have some very strange behaviors after getting strep throat. Before this, the girls had recurring illnesses and bacterial infections of all kinds. My oldest at the time was a normal 3 year old. In March, she had strep, then scarlet fever and within DAYS became a different child. She woke up the next morning with OCD-stacking towels of any kind over and over, writing the letter T over and over (hundreds of times and could not stop), would not wash her hands, would not sleep in her bed because of "bugs". Started to have hallucinations at night time. Refused to go to school all of the sudden (which had always been her favorite place)..would scream and kick when I would leave...so severe separation anxiety. Started crawling up and down the hall, licking strange objects (slides at the park etc). She would growl at people as they passed by. She was violently hyper, and would cling all over me and became aggressive with her little baby sister. She had heightened senses, and seemed sensitive to light and sounds. Before this, she was always happy, laughed all the time and was a sweet normal 3 year old. I thought for sure my daughter had somehow completely regressed into full blown autism. After a few days of this, Sienna had a really high fever. How can they be sick AGAIN....and have all of these strange behaviors? It just did not make sense. A few days into the sickness and behaviors, Scarlett developed a very obvious and strange facial tic. It was the scariest face I had ever seen. It was something she could not control, like she was possessed. Something was taking my sweet little toddler over.

Long story short, we immediately saw 2 separate pediatricians who did not recognize it as PANDAS. Both diagnosed both of my children with strep AGAIN, and referred me to a neurologist because my oldest did indeed have rapid onset of OCD, tics, separation anxiety, refusal to eat, peeing the bed, night terrors and the list goes on and on. In the middle of this my mom and aunt had been talking and had researched and found PANDAS (pediatric autoimmune disorder associated with strep throat) on the Internet. My mom called me, and told me to read this article and said that the strep could indeed be the reason for the inflammation and the behaviors. I read it, and to my surprise Scarlett exhibited EVERY SINGLE SYMPTOM except rages, and deteriorated handwriting.

Here is what I read (don't forget to finish reading my blog entry after reading these!) This will help to define PANDAS better than I can write it out:

http://www.nimh.nih.gov/health/publications/pandas/index.shtml

http://pandasnetwork.org/understandingpandaspans/about-pandaspans/whatispandas/

https://www.bostonglobe.com/magazine/2012/10/27/the-pandas-puzzle-can-common-infection-cause-ocd-kids/z87df6Vympu7bvPtapETLJ/story.html

http://pandasnetwork.org/understandingpandaspans/about-pandaspans/symptoms/


Well, holy crap. Without needing any doctor to diagnose this for me, it was very obvious this is what it was. When my husband got home on March 27th 2014 from work I told him all about it. He is a very laid back, and a non-drama type of person. He also was very aware that something was not right with Scarlett. Since he was gone a great deal of the day at a very demanding job I had taken videos, photos etc. of what Scarlett was going through for the past week. When he read this, he agreed this was without the shadow of a doubt what our little angel was facing. He started to research, and found a doctor in Ramsey NJ who is a pediatric neurologist that specializes in PANDAS. We watched an interview on youtube that night from Beth Maloney a mother of a child (Saving Sammy) with PANDAS:

https://www.youtube.com/watch?v=Yfvkfpiyhws

After discussing it at length that night I decided to call the doctor and also call my pediatrician back to get a prophylactic antibiotic instead of amoxicillin to see if that would help her. The next morning, I was able to directly speak with the doctor and make an appointment for 2 weeks out. I called our pediatrician back, who listened and agreed to changing the antibiotic since he had seen her facial tics in his office (the one who told me what a "tic" even is) and called in the pharmacy for penicillin.

After 5 doses of penicillin, Scarlett's facial tics were almost GONE, and her other behaviors cut in half. Our baby was coming back. Two weeks later, she was almost back to NORMAL. When I went in to see the PANDAS specialist she was 80% back to herself. I was lucky to have had taken many videos of the bizarre behaviors, and also had 2 regular pediatricians see the behaviors so they could speak to the neurologist. After blood work, Scarlett was officially diagnosed with PANDAS.

That is the "short" version of how we came to find out what was going on with her. It has now been over a year since the diagnosis. Since then, we have seen 4 separate neurologists and all have diagnosed her with PANDAS and confirmed what we already knew. I have now met, observed and spoken with  many parents and children of all different ages and situations with PANDAS. It is a very diverse, and complicated condition. All children present differently. Some children are very cut and dry like Scarlett, whereas some take YEARS to even diagnose and figure out that is indeed what is going on with them. Other children have additional health issues that contribute to the development of PANDAS. No two cases are alike, and a treatment plan that may work for once child may not work for another.

I have been very blessed and fortunate to find the right doctors, and have met some fabulous professionals and parents who have guided me a long this path. Since our new journey, our family has changed a lot. We look at life very differently. During the winter and fall months Scarlett and Sienna both got sick every 2-4 weeks. Sienna has never been officially diagnosed with PANDAS/PANS, but shows some minor signs and symptoms of it as well. She mostly develops some separation anxiety and OCD, but nothing near as cut and dry as Scarlett.

During the summer this year, they both had their tonsils removed and we had NO FLARES. Not one. To define a flare...a flare is when (for my kids) they get sick and within a day or maybe even a day before start to have tics, OCD and all the other symptoms. Sometimes it is not severe, and other times it is. It is an unpredictable roller coaster. Often, Sienna will get sick physically with little to no PANDAS symptoms and Scarlett will not even be sick but will have full blown behavioral changes....mostly starting with the scary face that we now understand is a facial tic. Now we are aware of how to manage this and have found the right doctor and methods of treatment for our kids that help to manage it. *SIGH OF RELIEF* However, it is still a very exhausting thing to deal with, and still very much affects our daily lives.

As of today, Scarlett is a mild to moderate case of PANS. Here is a short explanation of PANS:

"PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) is when an infectious trigger, environmental factors, and other possible triggers create a misdirected immune response results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, severe restrictive eating,  anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, and more."

The difference is that she can basically have a "flare up" from ANY virus, bacteria, allergy etc. So for us it is not just strep that is the culprit. When she has a virus (the flu for example) she will tumble into a full on flare. It could last a few days, a week or even weeks at a time depending on how much inflammation is introduced into her brain.

Past Treatments

For treatment, I have tried the following: essential oils, complete diet changes (no gluten, no casein, only whole foods), homeopathy, different prophylactic antibiotics , and so many supplements it will make your head want to explode! My approach has been to heal her gut, and help reduce the inflammation in her body, thus making it so she does not continue to get sick so often. This makes it so the brain (basal ganglia) does not remain inflamed. Over the past year some things have worked really well, and some have done nothing. 

What Works For Scarlett

Going gluten free and casein free for 5 months along with supplements really boosted her immune system. We also cut out sugars and dyed foods. This allowed her immune system to heal, and inflammation to lower. Essential oils are nice to help calm her down, but I cannot say they have been responsible for any of her healing. We personally did not see a big difference with homeopathy only...but I still use remedies over medicine first if we can. We found an amazing integrative doctor in Philadelphia that we see every few months. His approach is healing the inflammation, killing yeast and parasites (anything that can be causing abnormal immune function) and also introducing medicine as needed. He does a penicillin bysillin shot for Scarlett every 2 weeks as a preventative approach. It seems to keep her moods more leveled and keeps her tics away. In this past year a new symptom she developed during flares is skin picking and eyelash picking (trichotillomania) . She only does this when sick or affected by some kind of inflammation, and almost always in private. Allergies cause a big flare up so now we have her on an antihistamine in conjunction with her supplements. 

Because of her tics, she has become very self aware and self conscious and struggles socially. She has also been diagnosed as MILDLY on the autism spectrum or possibly just has social anxiety and some autistic traits but not fully on the spectrum. As you can imagine, if you couldn't control your face fully it may be hard to feel confident with friends. Next year, she will be doing some social occupational therapy and we will also continue to work as hard as we can to keep her interacting with other kids her age, and involved in normal 5 year old activities. She is a very sweet, loving girl that loves to have friends... just is not always sure how to go about it. She is extremely gifted and talented in art, speaking, sports and memorizing things. 

Also, another side note is we like to travel as a family. To be able to do this successfully I have always had to get both of my girls on a prophylactic antibiotic the week before we leave on a trip to get rid of PANDAS symptoms and hopefully keep them at bay from getting sick being exposed to different bugs on the planes and wherever we are going. Also, since we live far away and want to actually enjoy our family and friends when they come to visit I always prepare to make sure we are on the penicillin shot so that we can have a good, normal visit with family members and keep PANDAS under control. 

To keep it simple, I am going to outline a list of what we are currently doing for her...and based on symptoms that can change.

How Its Been Since the Diagnosis

March 2014: Diagnosed with PANDAS. Started on penicillin and augmentin a prophylactic antibiotic. Stayed on for 3 months. Flare lasted for 4 weeks. Back to normal. Worse flare ever.

April 2014: Blood results show re-curring strep infections, pnuemoccocal infections, mycoplasma infections, and several titers elevated and an indication of several vaccine failures. Scarlett is fully vaccinated at this point. All thyroid levels are regular, blood work up is normal besides the vast amount of infections that seem to be affecting both girls over and over.

June 2014: Took a break from antibiotics. Mid June kids got sick again with strep. Started augmentin for one month. I am so nervous to give them so much antibiotics so I only do one month. Supplementing fish oil and probiotics and multivitamins. Flare lasted a few weeks.

Summer seems to be a great time for us. Not alot of sickness, or PANDAS symptoms at all. Some things here and there, but for the most part our summer was normal.

September 2014: Crazy PANDAS behaviors are back. Go to doctor, no strep diagnosed. Get blood work done again. Behaviors intensify. Go do doctor again a few days later. Both positive for strep. Both girls start augmentin nightly. Probiotic, multivitamins, fish oil and using vetiver and lavender oil. Appt for second opinion, autism testing. Scarlett is diagnosed as "mild spectrum disorder and PANS" at Children's Specialized Hospital. They recommend occupational therapy, and antibiotics. At this point I need to get my children better, and these doctors just won't cut it. When this first started I have had several friends give me names of friends who have had children with these issues and professionals. Two individuals who really helped me along this journey and helped me to find answers were: Maria ONeil who is an amazing and fierce mother who healed her son's immune system completely from vaccine induced autism. Matt Ogle has also given me hours of advice via email and is a pediatric chiropractor who specializes in helping kids with neurodevelopmental issues. 

October 2014: Doctor recommends no more vaccinations because both girls immune functions are compromised. Girls both have had croup, pneumonia, strep. Back on the antibiotics we go and at this point I am thinking we need to start to heal their immune functions we need to change their diets, although no doctor has told me this as of yet, but some opinions from those who have done this before is getting me thinking this is the right path. I decide to try a homeopath...there has got to be another way other than antibiotics which just seems like a cover up! Oct 15th we have homeopath appointment with one who specializes in kids with Pandas. We try this for 8 weeks with no results. The kids keep getting sick so I am not sure this is the way to go. Oct. 27th discontinued antibiotics again.

November 2014: Doing streptococcus homeopathic treatment, along with other protocols. It seems to put Scarlett into a complete flare up. Throughout the entire month, PANDAS symptoms continue to increase. 2 weeks into it Scarlett is having full on facial tics again and cannot even attend school. Take girls to doctor, both diagnosed again with strep. Homeopath wants me to do a yeast protocol and a vaccine detox and heavy metals testing. In the mean time PANDAS neurologist is supplementing antibiotics as needed. He highly recommends T&A (tonsillectomies and adenoid removal for both girls). 

December 2014: Both girls have low grade fevers... and Scarlett tics, OCD will only wear black plus all other symptoms.

January 2015: Sienna is sick, Scarlett is not but is having PANDAS symptoms. Start antibiotics again for 4 week period. At this point we are sick every 2-4 weeks. I must figure out something else. Homeopathy does not seem to be the entire awnser at this point all though it may be helping, I do not think its going to cure this deep rooted immune function issue. We stay on antibiotics until Feb.

February 2015: I am researching and in desperate need of an integrative doctor. I have finally found one in NYC but he is $900 an hour and does not accept our insurance that we pay $1,000 a month for. Finally after hours of research I stumble upon a doctor that works in the Autism Treatment Center. This doctor has a different way of looking at it, and has healed his twin sons from autism, and the other one from PANS.

March 2015: March no antibiotics but having full PANDAS symptoms. I take kids to new integrative doctor in Philadelphia March 17th for first appt. I bring with my all of our past blood work and testing. The first step in seeing the new doctor is getting new blood work. It is not uncommon for us to re-do bloodwork every 4-6 weeks to see what is triggering the flares. Lots of needles to say the least for these poor girls. The doctor recommends the following to start with: 1) Penicillin SHOT (very painful but no more oral antibiotics), gluten free casein free diet, soy free, low sugar and adds in supplements. Supplements are: berebin, biofilm, VSL-R 3 probiotic, omega-3 fish oil, and we are going to try flucanazole for yeast treatment and artemesia for possible parasites. After the shot, Scarlett is literally a different kid. She is happy, no tics, no OCD nothing at all...just her happy normal self. 

April 2015: We continue the doctor's treatment plan. April 22-26th both girls get very sick. Fevers, strep and PANDAS. We go for an emergency appt to Philly and he gives Scarlett a penicillin shot. Within hours, I see the change in her again. We may be on to something with this penicillin shot.

May 2015: Continue shot and this is the happiest, most well adjusted Scarlett has been so far. What a relief. She is still GF, CF and the low inflammation diet and low sugar also seems to be a gold mine. Finally, something that is working.

June 2015: Both girls are scheduled for T&A surgeries. No PANDAS so far and we have kept them on the shot. After surgery, Scarlett seems even happier and better. The T&A got rid of those tonsils that harbor so much infection and bacteria. I feel like we may actually be able to function and live a normal life! Hallelujah! A week after surgery they are both back to normal and we are over the moon happy. We go to six flags, the beach and swim in our pool. Our lives feel like we may see some normalcy after this year of hell.

July 2015: No penicillin shots needed, no special diets. Probiotics, vitamins and supplements we stay on. We eat healthy for the most part, but a part of me really wants to live NORMAL! So we have fun, and laugh and live as normally as possible.

August 2015: WOW, we have made it to August and this summer has been nothing but fun and amazing. PANDAS seems to be gone and we haven't needed antibiotics in 3 months now. I am really convinced we have beat this thing.

September 2015: As fall creeps in the weather starts to change. Both the girls get walking pneumonia and croup. Neither seem to exhibit ANY PANDAS symptoms. No mood swings, meltdowns, weird faces, OCD nothing. Is it possible that my kids can get sick like normal kids and that PANDAS/PANS is gone?  School has started. I'm getting a bit nervous for the bugs that they will be exposed to at school. We have gone 4 months without needing special treatments and for the first time since we have lived in NJ are happy and our lives are normal. Sept 12th: Scarlett starts to get major allergies from the changing weather. A full on tic episode happens at church, and I have a gut wrenching feeling something is going awry. I have the intuition and feeling we need to call the doctor to make an appointment just in case. So far she has loved school and 2 weeks into it been so excited and happy, no strange issues. I make the appointment just in case for October. Sept. 21st I take her to school, and she is terrified for me to leave her there. Deep down, I feel something is wrong...but I also want to give her the benefit of the doubt. Pins and needles. After school I take the girls to the park. Scarlett starts growling at some kids. My stomach sinks. She needs to be treated. Her allergies are full fledged. Poor girl is so inflamed. We start an anti-histamine. It seems to hold her over. Sept 22nd both girls have croup. I then find out in a dentist appointment that Scarlett has 4 cavities. It seems that the streptoccocus bacteria that was living in her tonsils before may be eating her teeth away now!  I take them to Philadelphia and we do a penicillin injection. 

October 2015: This flare has had some strange qualities being that Scarlett seems to be able to function in life normally and better than she has for the past year. PANDAS is still there, and she still gets her symptoms on and off but for the most part can function. Yesterday, October 8th we went in and got her another penicillin shot . For her they are every 2 weeks. She is at school today and went with a big smile on her face, and said she would be fine. Here is our current treatment protocol:

1) Penicillin bysillin shot every 2 weeks (prophylactic against bacterial infections) We are choosing to do this so that we do not damage the gut any further with oral antibiotics.

2) Dairy free diet, low sugar, low gluten, no dyes.

3) Refrigerated probiotics in the morning

4) Evening: Fish oil (lowers inflammation)

                NAC N-Acetyl Cysteine (for skin picking)

                Inositol (for OCD) 

                Vitamin D droplets (increase immune function)

                Vitamin B12 (for low energy)

                Multivitamin packet

5) Essential oils On Guard and others as needed

6) Homeopathic remedies for inflammation as needed

With this, we are hoping that we can keep both girls stabilized and healthy with minimal sickness this winter to alleviate PANDAS symptoms. We are now able to administer Scarlett's penicillin bysillin shot at home under doctor supervision so we do not have to take the 2 hour drive to Philadelphia every 2 weeks. On top of our insanely expensive health insurance, we pay extra for the shot ($100 per month) plus eating healthy and additional supplements. The girls will no longer be vaccinated, since their immune systems are compromised and neither can handle the toxic properties that are contained in the vaccines. They have medical exemptions for school. 

Whew! That was exhausting just typing it all out from the notes I have taken over the last year. I did not include every detail, fact and emotion at all...my goal was really just to give some of you insight as to what PANDAS is, and how it can be treated and managed. There are hundreds of details I did not include, daily struggles, successes, and also sicknesses. I have no idea if this information will help anyone, but even if it is one child....this will have been worth writing. Scarlett's treatment plan may not work for another kid with PANDAS but is what is currently working for her. 

The key to this illness is finding out the hidden trigger is as to WHY the child continuously is getting sick, and what is triggering the inflammatory response. Some children may have underlying lyme disease, or another tick borne infection or other illness that is causing the compromised immune function. I believe that antibiotics can help to manage the illness, but are NOT THE CURE. These children need special parents, and professionals to give them special care for their fragile immune systems. I have the highest hopes for both my girls, and hope that this year we can beat this completely. If not, I will continue to supplement and give them the treatment they need to live as normally as possible. In and out of treating PANDAS we have a happy, full and loving life. We live as normally as possible and try to keep our kids as active in sports, school and church as we can. We love to have play dates and they love their friends. PANDAS is NOT contagious, so please do not be afraid to interact with families that have children with PANDAS. They need your love and support even more than the regular child. Sometimes a PANDAS kid may be able to function almost normally and mask their behaviors in public, but once they get home, they will all unravel. I also have not shared a lot of the emotional side that this experience has harbored for me personally because I just don't know if I have the energy to do so. Just watching my daughter smile, have friends, go to school and participate in sports is the greatest blessing I could ever ask for and I thank God every day that she is able to do so. I am the mom screaming her head off at the soccer game and crying when she makes a goal...because not many understand what it may have taken her to get to that point, to do something that seems so normal for other kids.  

We are grateful for our family and friends support. I am thankful that Scarlett has a manageable and mild to moderate case of PANS. I am optimistic for our futures and grateful for the lessons I have learned along the way. This has made motherhood even more emotional and deeper and stressful than I could possibly imagine.

Please feel free to contact me if you need have any questions. I pray for the families with the more severe cases that are having a hard time finding treatment that works. Please take the time to share this with others, so that they can be educated on this illness and possibly help a child that is needlessly suffering. 1 in 200 children suffers from PANDAS or PANS, and it is my guess that it will soon be as common as autism (every 1 in 68 children now on the spectrum) and diagnosed in regular pediatrician offices around the country since so many are finally starting to recognize and diagnose this controversial and rarely understood illness. Thank you for taking the time to read this, we deeply appreciate it.

With love and gratitude,

Ashley Palmer

             
**Note: I chose to only include photos in our happy healthy times. Someday I may choose to include some footage or photos of PANDAS behaviors, but for now I choose to only share it with doctors for medical purposes.

                         "It's not the load that breaks you down, it's the way that you carry it." 

"Sometimes people around you won't understand your journey. They don't need to, it's not for them"

"Worry is like walking around with an umbrella waiting for it to rain."

"A good father is one of the most unpraised, unsung, unnoticed, and yet one of the most valuable assets in our society." 

"Strength doesn't come from what you can do, it comes from overcoming the things you once thought you couldn't."

"She believed she could, so she did." 

"Successful mothers are not the ones who have never struggled. They are the ones that never give up despite the struggle."

"Though she be little, she is fierce." 

"Best friends make the good times better, and the hard times easier."

"Take time to do what makes your soul happy."

"Best friends are people who make your problems their problems, so that you don't have to go through it alone."

"Some people make your laugh a little louder, your smile a little brighter, and your life a little better." 

"Play is often talked about as if it were a relief from serious learning. But, for children, play is serious learning. Play is really the work of childhood." 

"Having a soft heart in a cruel world is courage, not weakness." 

 "Every family has a story...welcome to ours."

"All that I'm after is a life full of laughter."

"Having a sister is like having a best friend you can't get rid of. You know whatever they do, you'll still be there."

"Life is either a daring adventure, or nothing at all."

"To be in your children's memories tomorrow, you have to be in their lives today."

"Let them be little."

"Christ is the center of our home."

"The family that plays together, stays together."

"Travel is the only thing you buy that makes you richer."

"Happiness does not depend on what happens outside of you, but what happens on inside of you; it is measured by the spirit with which you meet the problems of life."

"Thinking and doing things we are grateful for is healing."

"One of God's greatest gifts to us is in the joy of trying again, for no failure to ever be final."

"Even the strongest of us have moments when the burden of life can be to great. It's then that the Lord whispers to our hearts...Come to Me, all you who are weary and burdened, and I will give you rest."

"No matter our circumstances, no matter our challenges or trials, there is something in each day to embrace and cherish. There is something in each day that can bring gratitude and joy only if we will see and appreciate it. "

"The trick is to enjoy life. Don't wish away your days, waiting for better ones ahead."

Mom's Visit

Last week my mom came into town for a week. It was so great to see her! We did so much in the week that she was here. Traveling all the way from Portland to New Jersey is a huge trek, so we had to make it count. The first day it poured rain and we just hung out at the house. The next few days we had babysitters, and were able to spend a day and a half at Cape May, which is 2 hours south of us. On the way we stopped in Atlantic City for lunch. It was nice to hang out together just us two.

Cape May-Leith Hall where we stayed

Mom and I at Cape May Lighthouse

                                                        Cape May Lighthouse

The entire trip we had amazing food! Seafood was so good and fresh. I made my mom an oyster lover!

Best Oysters I have ever had!

Cape May was a charming little town, and we got to see lots of dolphins at the beach, the lighthouse and enjoy amazing food. New Jersey beaches are surprisingly beautiful! After Cape May, we took my mom to see Point Pleasant Beach, and Seaside Heights. We drove around and saw a little of the damage from the hurricane.

Mom chasing Sienna at Point Pleasant Beach

Enjoying a little ice cream on the boardwalk

Yum!

                                        
                                           Canoe ride out into Silver Bay behind our house

 

After canoeing, exploring and beach fun we decided on seeing the statue of liberty the day before she had to leave. We took the girls on the ferry ride from the New Jersey side and took a half day quick trip to check out the statue. It was beautiful.

Scarlett planking in front of Jersey City

Lady Liberty

On the ferry ride back to Jersey

 

 The night before my mom left we got to see a house (short sale) that we actually ended up making an offer on...so we will see. It was nice to have my mom there for her opinions...I am so used to doing all this stuff all on my own! After seeing the house we had some amazing authentic Italian food.

                                
                                                YUM! Delicious authentic Italian food!

                                                                         My love and I

Sad to see her go;-(

 

After driving mom to the Philadelphia AirportScarlett and I were really sad that Grandma had to leave. We are so grateful that she took the time to make the trip all the way to New Jersey and visit us! Next time we hope to be in our own house;-). We can't wait to see her again in July/August when my cousin Connor gets married!