Aksel's Medical Expenses

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Aksel's Medical Expenses

From Jacqui Arnot

Aksel has contracted a rare autoimmune disease known as PANDAS. Health insurance companies still don't recognize it and will not help with the cost.

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Update #53

over 6 years ago

We are back at Stanford's Lucile Packard Children's Hospital today for the first of 3 daily steroid IV's. We tried the same treatment last December, but it had zero effect as Aksel was battling a pesky sinus infection. I'm keeping my fingers crossed that this time we'll lessen the inflammation around Aksel's basal ganglia. He's been in a holding pattern for almost 2 years now. I'm back on the war path.

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Who is Aksel? For those of you who don't know him, Aksel is a sixth grade student in San Rafael, CA. He's passionate about soccer, great white sharks, Lego and electronica.

Aksel has contracted a rare autoimmune disease known as PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep). Health insurance companies still don't recognize it and will not help with the cost. 

We have been living with PANDAS since October 2013. It started out as anorexia. He was dangerously thin but never stopped playing competitive soccer. His pediatrician recommended a psychiatrist who prescribed him SSRIs. He gained the weight back, but displayed adverse reaction to the medication. Then he developed OCD.

It was really by accident that I discovered an article on PANDAS in an online OCD support group. The symptoms were all there! I brought him back to his pediatrician -- who has been amazingly supportive and open-minded throughout the process -- and the strep test came back POSITIVE even though he had not complained of any strep-like symptoms.

I spent every free minute evenings and weekends researching PANDAS and discovered the Stanford Lucille Packard Children’s Hospital PANS/PANDAS clinic. Back in March 2014 I put him on the waiting list. After 6 months, his first appointment was Sept 23!

The PANDAS symptoms include 

•Debilitating, migraine-like headaches. He cries himself to sleep some nights. 

•He also complains of joint pain. 

•He enters into very dark moods at times. Once he goes down that rabbit hole it is impossible to reason with him. His whole face changes and he becomes another person. Not the Aksel I know.

•Tourettes-like symptoms: repeating the same thing over hundreds of times a day. (In Aksel’s case it’s: “I love you mom!” – sweet soul that he is.)

•Really the worst symptom is the OCD which stops him from participating in activities that most 10 year olds relish: he can’t enter large establishments like stadiums, restaurants, malls, movie theaters. Since June we have been staying close to home. Just this week he announced he wants to quit soccer which has been his greatest passion for the last 3 years… 

•His diet – even before I put him on a gluten-free diet – is restricted to organic, GMO free, preservative-free, sugar free foods. He will eat seafood as long as it’s not farmed or color-added. He won’t eat pizza or cake (or anything that his friends eat) which makes socializing difficult.

It was a long, lonely summer for Aksel, Jasper and me.

The reason for the seeming “psychiatric” symptoms is that there is a strep infection in his body. In layman’s terms: there are antibodies put into play by the infection, but in PANDAS victims, instead of attacking the infection they go after the healthy tissue of the basal ganglia in the brain. Thus the strange behavior described above.

Despite everything Aksel is going through, we are still comparatively lucky. He has never missed a day of school due to PANDAS. His grades have not suffered. His concentration is good. Up until the beginning of Sept '14 when he announced he was quitting, he was a mentor on his soccer team. If you didn't know him better, you wouldn't be able to tell that he was "sick." He has a highly functional form of the disease. Hopefully, we caught it in time. To those of us who know him, he is profoundly changed. We want to help him get back to himself: the cheerful, happy, smiling boy that we used to know...

I have been managing to pay the bills on my single mom’s salary, living from paycheck to paycheck, but I’m not sure how I’m going to handle these new medical expenses.

I have a $4K in-network deductible which I've already reached. An $8K out-of-network deductible which I will easily reach at the new clinic and then the recommended IVIG therapy (hemoglobin replacement) costs $10K per treatment. Most PANDAS patients need 2-3 treatments.

Help get Aksel back! Help raise PANDAS awareness!

I am happy to talk to anyone who wants more information or who thinks they may know someone who suffers from this disorder.

Thanks for your help!

Jacqui

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Jacqui Arnot posted a new update:
over 6 years ago

Update #56

We are back at Stanford's Lucile Packard Children's Hospital today for the first of 3 daily steroid IV's. We tried the same treatment last December, but it had zero effect as Aksel was battling a pesky sinus infection. I'm keeping my fingers crossed that this time we'll lessen the inflammation around Aksel's basal ganglia. He's been in a holding pattern for almost 2 years now. I'm back on the war path.

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Jacqui Arnot posted a new update:
about 7 years ago

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Jacqui Arnot posted a new update:
over 7 years ago

Update #53

Hello, all!

I've closed Aksel's fund due to the fact that we seem to have been infiltrated by a robot that is randomly collecting credit card numbers. I'm in contact with Fundly on this matter and they are looking into security on their servers.

If you'd still like to donate, send me an email: [email protected].

We're off to Stanford in a couple of hours. Aksel is doing well and is very excited to start 7th grade on Thursday. I'll post a summer update soon!

Jacqui

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Jacqui Arnot posted a new update:
almost 8 years ago

Update #52

Aksel turned 12 on March 19th. He he is with our dog Inji on his birthday.

We made it through the winter without any major sickness. He’s taking a narrow spectrum antibiotic which prevents him from catching strep again. He’s been on it for about 1 1/2 years now, delicately balanced with probiotics and a super clean diet he seems to have found balance. That said, if anyone around him has the slightest cold, Aksel turns green (I didn’t want to include those pictures) and gets dark circles under his eyes — there was a lot of that during flu season.

We’ve continued regular visits to the PANS Clinic at Stanford and monthly visits to his homeopath. Fortunately for me both providers respond to my emails almost immediately, so, great support for all my many questions. Despite all our efforts, I noticed that Aksel’s health had plateau’ed and he was starting to slip backwards. He was speaking less and smiling less. He did a round of testing with the immunologist at Stanford, but the results were inconclusive. She was ready to start the next round of tests and was surprised when I told her he hadn’t returned to baseline. He still has 30% to go to get back to the old Aksel. His latest Cunningham panel also proved unremarkable (that’s a good thing…)

I belong to an amazing support group on Facebook. Armed with that knowledge, I went back to Aksel’s homeopath and asked her to treat him for leaky gut (which is thought to be at the root of all autoimmune diseases). I asked her if she could recommend an integrative doctor. She did and astonishingly the new doctor is local AND included in our health plan. (Cue angels singing) We had our first appointment last Tuesday.

The first question she asked was, “Has he been tested for lyme?” I almost fell on the floor. “Please. Test him for lyme.” I’ve been asking all my doctors to test him, but for varying reasons it hasn’t happened yet. The test has to be performed by a lab known as iGenex. Any other test is not thorough enough and might give a false negative. Aksel WAS tested for lyme 2 years ago… The results were negative. The first round of tests will cover:

Bartonella
Babesia
Mycoplasma
MTHFR mutation

As well as doing a Functional Adrenal Stress Profile which means we’ve spent today collecting 3ml of saliva every 4 hours. Yeah. Fun.

Maybe we will finally get to the root of what is keeping him from fully recovering…

The most astonishing part of our visit, though, was when she said, “I think his PANDAS is cured.” What? That was the first time I had heard those words… Cured? “So, we’ve been treating him for the wrong thing?” Well, stay tuned. I’m sending Aksel’s frozen spit to the lab via UPS. We’ll do more blood work this week and I’ll get the results on June 7th (apparently integrative doctors are in high demand — it was the first appointment I could get.)

PANDAS has been such a huge part of our life I am almost astonished to hear that it might be gone. Whatever IS keeping Aksel sick, though, promises to be equally difficult to cure. I’m on tenterhooks for the next 2 months until I find out what it is.

You will notice that I’ve changed our fundraising goal to $40K. None of the tests are covered by insurance — even though the doctor is in network — and I am not going to deny him a single one. After his huge improvement last April, it is painful to see him languish at 70% and the thought of declining, well, let’s not go there…

Aksel is now a self-proclaimed “geek.” He loves middle school. He switched from alto sax to tenor. He plays in the jazz ensemble after school. He also plays electric guitar. Honestly, music was his saving grace throughout his illness. Something about the order of the notes clicked with the PANDAS induced OCD. He has blossomed into a disciplined musician.

He’s looking forward to spring soccer starting this week. I don’t know if he’ll ever play competitively again, but we’re trying to stay open minded. He still has lots of joint pain in his legs which makes it difficult…

Still, 1,000,000 times better than he was back in Fall 2014. It’s been a long road… Thank you, everybody, for your continued support. Jasper, Aksel & I do not take a single kind word or gesture for granted. I may not post as often as I used to because progress is slow and the news is less dramatic, but know that we’re in the trenches fighting the good fight.

If you think you know someone suffering from PANDAS and need resources, please don’t hesitate to contact me!

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Jacqui Arnot posted a new update:
about 8 years ago

Update #50

I'm really happy that PANDAS has made it into the mainstream. Dr. Oz did a story on it 2 days ago.

The aspect that disturbs me, though, is that they make it out to be a mental illness. Only. Now, I know that I’m probably not the most objective person being a PANDAS mom and living with the disease for over 2 years, but I don’t think they represented it correctly. Is encephalitis a mental illness? PANDAS is an infection in the brain caused by strep. The root is medical. Clear the infection and the psychiatric symptoms disappear. It’s a typical case of dealing with the root of the problem and NOT the symptoms. I also found it odd that he interviewed the author of the book “Infectious Madness” and a psychiatrist, but not a medical doctor.

Speaking from our experience, Aksel’s healing only began when he got the correct MEDICAL treatment. While it was nice to have support with CBT and ERP, as the infection goes down, so does his need for that therapy. In fact, we have had to stop his therapy altogether since Aetna only paid for six months and wouldn’t renew the out-of-network agreement. Yet, he continues to get better.

The segment might have been damaging to the PANDAS community in 2 ways:

1. Many psychiatrists, counselors and therapists are going to be happy to jump on the PANDAS bandwagon without studying the facts
2. Dr. Oz makes mention that mental disease is not contagious, which opens up that argument

“Can You Catch a Mental Illness?” is the name of the segment. I don’t have the answer to that question. I do know that PANDAS research poses many questions as to the root of mental illness. What if all mental illness had its’ roots in infection that could be cured by proper use of antibiotics, herbs and diet? Not a very popular topic with the pharmaceutical companies. But, I’ll save that argument for another day.

Here’s a link to the video. Again, glad it’s out there, but seems like a missed opportunity for helping the PANDAS cause.

http://www.doctoroz.com/episode/dr-oz-investigates-can-you-actually-catch-mental-illness?video_id=4722637574001

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Jacqui Arnot posted a new update:
about 8 years ago

Update #49

Excellent video featuring Aksel's doctor: Jenny Frankovich. We owe her so much!

https://vimeo.com/149501285

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Jacqui Arnot posted a new update:
about 8 years ago

Mobile update

Happy Thanksgiving! So much to be grateful for...

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Jacqui Arnot posted a new update:
over 8 years ago

Update #47

I didn’t want to appear to be repeating myself, so I skipped the update where Aksel took Third Place in the District-Wide Spelling Bee -- although it was a great day... He is pictured here with his brother during a break at the County Wide Spelling Bee, yesterday, November 7th. He hung on for two and a half hours. He was calm, cool and collected. He had studied hard and he was prepared for the words on the list. The competition was fierce. Everyone had studied. It was only when they ventured “off list” that the warriors started to fall. Our hero was stumped with “awry.” He’d seen the word before, but never heard it pronounced out loud… Nevertheless, he was in good spirits. He knew he had tried his hardest and he had done his best. He didn’t perceive this as a loss for one second. Spelling Bees are 50% luck. The person after him got “medallion”... I know, right?

This morning, Sunday, after shuttling Jasper to his soccer car pool and feeding Aksel an omlette, the phone rang. It was the principal of his school. She called to personally congratulate Aksel and to invite us to the next Board of Ed meeting where Aksel is going to honored for his outstanding school performance. I am so proud of him and so appreciative that the school recognizes his hard work. What a thrill!

So, another victory for the good guys. Take that, PANDAS!

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Jacqui Arnot posted a new update:
over 8 years ago

Update #46

This is not a picture of Aksel.

I want to dedicate this update to the uncelebrated warriors: the brothers and sisters of PANDAS kids. Not only do they lose a sibling, but they witness the unraveling of their parents, too. Their safe little world becomes scary and unpredictable. They are sidelined while their parents are forced to deal with the pressing health issues of a sibling who nobody recognizes. By the sheer virtue of being “the easy one,” they become neglected. They are often diagnosed with PTSD. So, I dedicate this post to Jasper, Aksel’s big brother who quietly turned 13 in September.

Last weekend Jasper played a soccer tournament in Davis, 65 miles from our house. After some back and forth (“Too far. Too boring.”) Plan A’s and Plan B’s, Aksel agreed to come and watch Jasper’s two games on Saturday. I was ecstatic. It was early and chilly out. Aksel and I in our down jackets, shared a beach chair to keep warm. They lost, but spirits were high.

With 3 hours to kill waiting for the next game, a bunch of us decided to go out for brunch. Never an easy endeavour for Aksel, we Googled the menu at the local crepe place to make sure there were gluten-free options for him. There were. He agreed. The soccer moms sat at one table and the kids at another. Aksel and 3 eighth graders. They joked and laughed and tapped on their devices (not Aksel who wouldn’t take my phone when I offered it to him) and devoured every morsel. Thank you, boys, for making Aksel feel at ease. Thank you, Jasper.

The second game ended in a tie, but, we didn’t care. It had been a really exciting, the boys had played well and it was a beautiful day. On the long drive home we passed an outlet mall. What? This day was about Jasper and there was a shirt he really NEEDED, so, spontaneously, we pulled off the highway. With a kid who hadn’t been in a mall for 2 years. He was fine. He was great. And Jasper found exactly the shirt he wanted. It was nice to have it be about him for a change.

The next morning they had conflicting games, so I sent Jasper off with his team-mates and took Aksel to his game down the street. They both lost. But, that was OK because it meant Jasper got home earlier. :) That afternoon, much to Jasper’s delight, Aksel played video games with him -- albeit only for the 45 minutes his lingering OCD allows. (Jasper had called me at work earlier in the week to announce, “Aksel is playing video games with me!”)

So, one tie and three losses, but we still feel like winners. We are taking our life back in giant armloads. Maybe in a few years we will take it all for granted again, but in this moment, we’re enjoying ourselves.

So, to all the PANDAS siblings out there, I say, “Hang on. It won’t last forever! You’re gonna get that kid back.”

(and in case you haven’t guessed yet, the picture is of Jasper)

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Jacqui Arnot posted a new update:
over 8 years ago

Update #45

Normal is extraordinary

Today was Opening Day for the Dixie Youth Soccer Association. Aksel was up early, showered and in his new uniform brandishing number “11” for the team photo.

Normal, right?

This is the same kid who 10 months ago could not even be in the same room with a soccer jersey, the kid who withdrew to a bench at lunch-time for an entire year rather than set foot on the soccer field and who would crumple at the mere mention of the word “soccer.”

How did this happen? The last week of July I found myself without a babysitter when Vini’s summer replacement came down with strep (yikes. “Please stay away.”) Aksel spent the afternoon at his friend Declan’s (normal.) Declan’s parents were considering co-coaching his rec team. They talked about if over dinner. Two days later, Aksel announced that he would be returning to rec soccer. He made this announcement while in the car. I had to pull over!

Normal, right?

So, why the big change? Was it the IVIG? Maybe. I attribute it to something else.

On May 5th, I took Aksel to see a homeopath in San Anselmo. She was recommended by a lady who works at the place where Aksel gets his hair cut (normal) I almost quit going to that place due to it’s unfortunate name: The Panda Room… It turns out Panda Room Lady has three kids with PANDAS (coincidence?) Aksel is very glib about describing his ailment to anyone who will listen and she overheard us talking. So, I made an appointment with the homeopath ASAP.

The homeopath sat us both down in the examining room. She placed herself in front of Aksel and looked at him. Deeply. It was more like she absorbed him. She asked him a lot of questions. She asked me a lot of questions. Then she prescribed two remedies to be taken three times each day.

Within a couple of weeks he was:

accompanying me to the grocery store
reading in bed
using the iPad, iPhone and computer
watching TV (only National Geographic documentaries, but normal)
engaging in conversation with me
walking the dog
leaving the lights on
showering daily
eating in restaurants
A million other things that I’ve already taken for granted…

Normal. I don’t even mind wrestling with him for the iPad. It feels normal. And normal feels good.

Declan’s parents ended up not coaching the team, but with his new-found (normal) coping mechanism, he was able to absorb the changes and just roll with it. He’s ready for his first game next week. And he comes to all his brother’s games again. Normal.

In the meantime, Aksel has started middle school. He loves it. He rides the bus to and from school with his big brother (who is less happy with the arrangement…) He has switched from alto sax to tenor. He’s been invited to play in the Jazz Ensemble after school. He’s graduated from acoustic to electric guitar -- his OCD is morphing him into a disciplined musician.

Other normal things Aksel did this summer:

Jazz Combo Camp
Played in the Filmore Jazz Festival
Extreme Marine Camp
Wild Care Camp

Aksel the non-conformist picked his summer activities based solely on his interests. He didn’t know any of the other kids going to camp. He fearlessly got on that bus to Coastal Camp with a bunch of kids he didn’t know and was off to a place he’d never been before. I wish I could bottle that day. Standing on the sidewalk with the other parents waving to our kids. He wasn’t the sick kid any more. He was normal.

After two years of nothing being normal, normal is the new extraordinary.

Epilogue:

I spent half the day Thursday trying to get the homeopath included as one of in-network providers. True to form, Aetna refused and I’m going to have to appeal. Please share Aksel’s page. While he has made huge strides, he is only functioning at 70% and we still have a long stretch ahead. The expenses keep piling up. We haven’t met our goal!

If you would like the name of our homeopath, email me. I am happy to help anyone who needs information on PANDAS.

j.a.

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Jacqui Arnot posted a new update:
almost 9 years ago

Update #44

This Memorial Day I find myself trying to “remember” what our life was like before PANDAS. While I don’t consider myself a traditionalist by any means, there was comfort knowing that there was a pattern to the fabric of our days. Memorial Day brought with it flags flying at half mast, parades, pancake breakfasts, red, white & blue outfits, b-b-q’s and swimming pools.

In the year and a half that we’ve been living with PANDAS it seems all our traditions are reduced to the same pattern no matter the holiday: unable to venture anywhere due to Aksel’s crippling OCD, we stay close to home, take a hike and have a quiet meal at home. To liven things up a bit, we added a big, yellow lab to the mix. His name is Inji and he is a constant source of amusement.

This weekend started on Friday by Aksel announcing he had a loose tooth. A cause for celebration for most families, we fastened our seat-belts and awaited the imminent storm. As we learned in March, a loose tooth in a PANDAS sufferer releases Strep in the mouth where it makes a beeline for the bloodstream and causes a “flare.” On cue, Saturday as Jasper and I prepared to head to his soccer tournament in San Francisco, it hit. I loaded Jasper into a teammate’s dad’s car -- grateful for spontaneous friends -- so I could postpone my departure by an hour to ensure that our trustworthy, loyal, worth-his-weight-in-gold manny Vini was comfortable before I left. It seemed like they were going to be OK. So, I made the hour-long trek to the soccer field.

Long story short, Jasper and I did not get to linger after the game and grab a bite as originally planned. A tenuous text from Vini asking if we could get home “sooner” sent us straight back. It was Sunday and we were supposed to eat out so I had only planned dinner for Aksel and Vini. As I have done countless times in the post PANDAS era, I changed plans at the last minute and told Vini to prepare the Memorial Day sausages. On Sunday. By the time we got home, Aksel was calm. I drew him an epsom salt bath with a few drops of lavender (one of many newly acquired tricks in my PANDAS arsenal) which knocked him right out. He was asleep. We had made it through the day.

Monday dawned on a different Aksel. Peaceful, sweet, affectionate Aksel was back. We took our hike me, Jasper, Aksel and Inji as is our new tradition no-matter-what. Aksel spied birds through his binoculars and identified flora and fauna in his Redwood Park Association field guide. It could have gone very differently, but I’m happy to say, this Memorial Day will go down as “the day Aksel spotted a rattlesnake slithering in the tall grass near the stables.”

As we sat down to dinner, I told the boys not to forget to remember the brave people who have made the ultimate sacrifice in order that we might live without fear. We pondered for a moment before we dug into our pot roast. The new tradition of non-tradition to which we have become temporarily accustomed.

Happy Memorial Day.

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Jacqui Arnot posted a new update:
almost 9 years ago

Update #43

Aksel is being honored the Consistent Achiever Award!

Once again showing the fabric that he's made of, Aksel kicks PANDAS to the curb to claim this prestigious award which is only given to one boy and one girl from each elementary school in the district.

I am so proud of my boy!

Imagine what he will achieve when he is healthy again... I'm looking forward to that day.

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Jacqui Arnot posted a new update:
almost 9 years ago

Update #42

I had to share this video of another family battling PANDAS. This girl's spirit is inspiring. Her mother is amazing, too. https://youtu.be/Z5obod-SoQM

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Jacqui Arnot posted a new update:
almost 9 years ago

Update #41

Aksel is finishing up his second IVIG. We were turned down by Aetna --as expected-- and couldn't go to Stanford, but here we are at Hill Park Medical in Sebastopol. He seems to be handling the treatment with no complications and is very anxious not to miss another day of school.

Thanks, everyone, for your donations which made this treatment possible and make it possible for me to sleep at night.

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Jacqui Arnot posted a new update:
almost 9 years ago

Update #40

It's Aksel's 11th Birthday! March 19th!

It was Aksel's wish not to receive any presents this year (he still hasn't opened his Christmas presents) and he didn't want to celebrate at school -- not even a fruit salad which is what we did last year. (Have we really been at this for over a year?)

If you run into him make sure to wish him a Happy Birthday! And for those of you who have been asking me what to give him for his birthday, well, you can always donate to this fund...

Happy Birthday, Aksel Eli! You are my pride and joy. I love you more than words can say.

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Jacqui Arnot posted a new update:
almost 9 years ago

Update #39

Calling All Dixie Elementary Cooks! Grades 2-5!

Fellow Dixie mom Fadia Sorel organizes an after school cooking class. This semester she is dedicating all funds to Aksel's campaign! It's not too late to sign up. Class starts Wed 3/4/15. Enroll here: http://goo.gl/forms/h6cY86LhDH or make your donation to Aksel's fund and mention Dixie Kitchen Kids in your comment. .

I am flabbergasted by Fadia's generosity of spirit and her selflessness in dedicating so much time and effort to Aksel's campaign. I look forward to the day when Aksel is well and I can give back to the community just like Fadia.

Thank you, Fadia! Thank you, Dixie Home and School Club for making this happen! Thank you, Principal Greg Johnson!

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Jacqui Arnot posted a new update:
about 9 years ago

Update #38

CTV (Canada) is doing a series on PANDAS. The first installment reveals some of the controversy amongst pediatricians. I found this fascinating -- train wreck, rubberneck fascinating. I'm glad the word is getting out: http://www.ctvnews.ca/video?clipId=551311&playlistId=1.2235664&binId=1.811589&playlistPageNum=1&binPageNum=1

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Jacqui Arnot posted a new update:
about 9 years ago

Update #37

Special thanks to Anita McKenzie for organizing a donation from Moksha Coffee Roasting (http://mokshacoffee.com/) Anita sold 12oz bags of coffee to the tune of $150 for Aksel's campaign. Thanks, Anita! Thanks, Moksha!

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/ #akselsmedicalexpenses