What it Means to Be a PANDAS Mom

I’m a Mama Bear. Literally. My son Jesse has PANDAS, so that makes me a PANDAS Mom, which makes me a Mama Bear. Hear me roar…well, growl. Grrrrrrrr!

PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus. It’s a mouthful, and it’s definitely not cute like the bears. It’s unbearable really, and nothing about it is black or white. PANDAS sucks.

What Should I Expect From PANDAS or PANS

In PANDAS, the child’s body becomes confused after a strep infection and creates autoantibodies that begin attacking the…wait for it…brain. Yes, the brain! Yikes! Specifically, the basal ganglia is under fire, which is the area of the brain that controls emotions, some movements, certain learning processes, and other functions.

Under attack, the brain becomes inflamed unleashing a cascade of seemingly unrelated symptoms that may look like mental illnesses or behavioral problems or neurological issues. PANDAS can happen suddenly and dramatically. Seemingly overnight, your child develops OCD, tics, ADHD, anxiety, sensory issues, urinary problems, insomnia, rages, anorexia, and more. Additionally, your child’s schoolwork may decline, especially math and handwriting.

PANDAS symptoms manifest differently for each child. It’s like your kid’s behavior is definitely different from before, and it becomes increasingly harder to find an explanation. Basically, PANDAS looks like everything, but nothing you’ve ever seen before. Your child is hardly recognizable. Grrrrrrrr!

In my son’s case, a bout of strep throat at the end of December 2009 brought us a completely different child by the end of the following month. My sweet, smart kindergartner started getting in big trouble at school. I was a Room Parent, but by the end of the school year, I was not even talking to my son’s teacher.

His behavior was way off at home too with more tantrums at six than he had as a two-year-old. Have you ever climbed into a ball pit to get your child and then carry him out of an indoor playground while he’s screaming at you? I have! Grrrrrrrr!

Since PANDAS symptoms are so sudden and intense and involve the brain, you might think doctors would be a big help. NOPE! Think again. Grrrrrrrr! In early 2010, I took my son into the pediatrician eight times in four months trying to figure out what was going on with him. We also saw several specialists and therapists during that time. He did receive a half-hearted “anxiety” diagnosis, but even that doctor felt there was something more.

I am the one that found PANDAS. Me. Not any of the doctors that we saw. One night in mid-May, I couldn’t sleep because I was worried about Jesse. Using Google, I finally connected my son’s December strep infection to his behavior changes and up popped PANDAS. I sat there in my pajamas sobbing while I watched a video of a doctor describing exactly what had been happening with Jesse. I called our pediatrician the next morning thinking that I had surely found the answer. The doctor said it was NOT PANDAS. Grrrrrrrr! My son did improve over the summer. But that September, Jesse had an onset of anxiety, vocal tics, rages, and OCD that coincided with another strep infection.

Again, our pediatrician said it was NOT PANDAS. Grrrrrrrr! I took my son to another local doctor for a second opinion, and she also said NOT PANDAS. Grrrrrrrr! It was an out of state PANDAS Specialist that listened to me and said he was “95 to 100% sure it was PANDAS because it couldn’t be anything else.” It had taken five long months after I found PANDAS on the Internet, but my son was finally given his PANDAS diagnosis in October 2010 and began receiving appropriate treatment.

pandas extra

It’s hard enough to get a correct PANDAS diagnosis, but PANDAS treatment can be tricky too. This is especially true if the child has previously been misdiagnosed based symptoms that look like mental illnesses or behavioral problems. While some children respond well to antibiotics, it can be more difficult to calm the symptoms in others. Kids might need steroids, anti-inflammatories, certain supplements, and/or Intravenous Immunoglobulin (IVIG) treatment, which are donor antibodies that help the immune system recover.

There may also be underlying immune deficiencies, genetic conditions, allergies, or other medical issues that need to be addressed. Plus, there is another condition called PANS, Pediatric Acute-onset Neuropsychiatric Syndrome, which brings basically the same symptoms in a child as PANDAS. In PANS, instead of strep, the triggers are walking pneumonia, influenza, Lyme Disease, other bacterial/viral infections, or environmental or metabolic causes.

It all gets a bit complicated to say the least. There are some great PANDAS/PANS physicians out there but not nearly enough. It can take months for appointments, which seems like years when your child is dealing with PANDAS symptoms. And don’t even get me started on medical insurance coverage or lack thereof. Grrrrrrrr!

Besides Google, one of the best sources of PANDAS information is other PANDAS Parents. Online support groups, parent organizations, and blogs provide much education on PANDAS. While doctors have come a long way in recognizing PANDAS and PANS, it is mostly because the parents have made this happen.

PANDAS Parents can’t bear (get it…bear) knowing that other families are struggling and desperate to help their children. That is why I, and so many other parents, do so much PANDAS/PANS advocacy and support work. I’m always a little sad to meet another PANDAS Parent, but I’m also glad that they know they’re not alone.

While my son is better now at 12 years old than he was at six, it hasn’t been easy. PANDAS kids can recover or go into remission, but it can take months or even years. There may be new flares or exacerbations of symptoms when they get sick or are exposed to illnesses that trigger the PANDAS autoimmune reaction and resulting brain inflammation.

My son has had several of these setbacks.

Earlier this year, Jesse had a PANDAS exacerbation after a strep infection and missed months of school while receiving treatment and recovering. In PANDAS, there are several steps forward and many steps backward, but there is always hope for recovery. Always.

And what is confusing to most people is that my son does not exhibit PANDAS Symptoms all of the time. He is not always OCD, ADHD, anxious or whatever. These are just symptoms of PANDAS that are not always present. Jesse can be mostly fine for months at a time, but sometimes, he is not fine.

PANDAS is certainly a roller coaster ride. You learn to be prepared for anything.

What to Expect From PANDAS or PANS. Children can develop OCD, Anxiety, Tics, and more.

Yep. I’m a PANDAS Mom and a Mama Bear. My advice to any parent is to never give up when you know something is off with your child. No matter what your doctor says, you know your kid better than anyone else. Also, Google is a worried mother’s best friend. I shudder to think where my son would be if I had listened to that first doctor who told me it was NOT PANDAS. But I’m a Mama Bear, remember? I don’t take the word “no” for an answer. Grrrrrrrr!

Advertisements

8 thoughts on “What it Means to Be a PANDAS Mom

  1. Excellent article Sarah. As a PANDAS mom whose nickname is mamabear, I can say that we can relate to all that you have gone through. Your son is lucky to have you. I am glad to hear it’s getting better as he gets older. I can say the same, but the roads still has twists and turns. Thank you for putting your story out to increase awareness!

  2. I am not a PANDAS Mom, but I feel the anxiety that you must be going through. I recently needed to support my body through an infection, and learned a bunch of immune system support like making bone broth, and Cod Liver oil, and alkalizing the body by taking some baking soda.
    I am also an essential oils distributor. Young Living essential oils and products are a great support to all of the body’s systems, emotions, and can be used for effective natural cleaning, to keep sickies away. My FB group is Outstanding Ocasio Oils, if anyone would like to follow my group, or get more information.

  3. Hello I’m a Pandas mom Grrrrr. ALSO a ASD.mom yes my daughter has both we just went thru a Pandas issue yes it very stressful makeycry all the time. We went thru it in 2014 it happened when she was with her dad at his house he called my saying Nya is not doing good her body is moving all sorts of ways he Google’s something thinking that’s what it was but we got her too the jedoc office got so.e test done blood work Eeg.MRI.Cat Scans EKg all came backnegetive . Then a friend of mine told me to ask him about Pandas yes he got on it ASAP meds 875 dose of amoxicilan 2x a day plus she was on a Med for anxiety too yes this is a nightmare that just feel like u have no where to turn & your the only one going thru it smh. Well two weeks a go we just had another episode as soon as I saw it yes too the doctors office we went got meds as of today I’m seeing that the Pandas bear has released my daughter she is coming back to herself amen still taking amoxocilain until it’s gone 60 pills for 30 days. I just say it’s too much thank Good I have my gmom causemy daughter like staying over house on Fridays till Sunday so I got a lil break her dad is in her life too so he had top work on weekend but he was calling & checking on everyday. I feel as though the schools need to be educated on this too when she first went thru it it was right when school was starting back up they didn’t know about it but she didn’t go the first day I wasn’t putting her on the bus like that went the second day met some teachers principle guidance counselor & her 1:1 told them what she was going thru she was attending a public school mainstream classes so it was new too them too see this go on that year was very rough for our family wity mom being sick & my sister dieing from Pancreatic cancer so much going on my daughter dealing with this Pandas. I connected wit a friend who connected me with a Pandas mom who helped me get thru this facts just knowing someone can relate to what you are going thru makes things feel a lil better plus this person knows pretty much about Pandas is even better an just a phone call away she has helped me thru any tears lol &helping me too remain strong plus I’m on a lot of sights to read from many moms across the glob who are dealing with is Pandas. I really the awareness needs to be out here even teachers need to be educated. Even doctors nerd too know more I have already been told their are doctors who don’t believe in Pandas let a lone know how top treat it even specialist need to be educated along with school nurses it needs to be known about it cuz many of our children are going thru this & society who have PhD behind their names don’t always know what to do or even the different signs of a flare up could be starting. Yes I am a mommma bear grrrrrrrrrrrrrrr!!! Thank you Sarah.

  4. I have never read an post that described my world the past 3 years to a tea!! Thank you for sharing and spreading the word!

  5. My AsD daughter has had bouts of PANS/PANDAS since age 4 that I can look back and pin point in her history. She has been misdiagnosed, hospitalized, put in induced comas in ICU for weeks at a time until finally 3 years ago at age 19 a doctor who has seen her at her worst and we were watching another pro-longed episode discussing another hospitaluzation said for “kicks” lets try a high dose of antibiotics! He told me he had just read an article about PANDAS and it made him begin to wonder about her cluster of symptoms. We administered high antibiotics for 48 hours and lo and behold my daughter at age 19 went from banging her head against the wall, poking her eyes constantly, screaming constantly 24/7, not sleeping, not eating, incontinent, dehydrated with a constant low grade fever to smiling, communicating sitting quietly playing games on her IPAD at a never before seen level! At first they only gave 5 days of antibiotics at a time. Every time by day 9 the symptoms returned! For the last 2 yrs she is on 500mg of teva arzithromycin everyday and while she still has minor exacerbations when her immune system switches on we have not gone back to what I refer to as the “exorcist” stage. We are looking into IVIG but this is administered by weight and 200 lb 21 yr old is not easily going to get anyone to approve and pay for it. Of course if we knew that a doctor “off label” was right at age 4 it would have cost us $5,000 back then but we didn’t have the money then either when she weighed 60 lbs!
    If anyone knows of a place that will do IVIG on a 21 year old PLEASE send me the info.
    Rsullivan2319@comcast.net
    I am now an “old grizzly mama bear” compared to most of you. But the joy I get from seeing my daughter back home with us enjoying a reasonable life is too much to put into words. Yes, before anyone knew what PANDAS/PANS was and Swedo made her findings public my daughter was one of the ones institutionalized for her own and our families safety. Getting an antibiotic daily continually and consistently has been the one and only medication, therapy or answer to make enough change to bring her back to us. She is still learning new skills everyday and reaching new levels of independence we never could have thought possible. All the best special education, doctors therapists and anti-psychotic meds did nothing. But 500mgs of antibiotic daily has saved her!

  6. I know it probably depends on the child but can anyone tell me the best antibiotic for Pan/Pandas? My child can not take Amox. so what would be a better choice? Is Zithromax effective?

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s