All You Need Is Love: October 2016

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.

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.