Friday, May 26, 2017

Special Needs Spotlight || Elise

Thank you so much for having me, Miggy! My name is Elise and I'm 15 years old. I live in Minnesota with my parents, older brother, and identical twin sister. I'm also the owner of a handmade children's clothing shop, Baby Buffalo Co. I have PANDAS, which stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep. I am passionate about spreading awareness for PANDAS, because I don't want any kid to have to go through what I have. I'm so excited to share my story with you today! 

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Miggy: Elise welcome! I am so happy you are here today. One, you're 15 years old and I while I've only featured a couple other teens before, I absolutely love sharing the viewpoint of some of my younger readers. Second, you're here to spread awareness about something very important that has only recently come to my attention so thank you! You're here to talk about a condition called PANDAS. First, can you quickly tell us what PANDAS is and how you get it?

Elise: PANDAS, short for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep, occurs when an infection, usually strep, triggers an autoimmune response that attacks the brain. The symptoms of PANDAS include OCD, anxiety, motor and vocal tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, and restrictive eating, often because of a fear of vomiting or choking. These symptoms can be severe and may come on overnight. Many parents refer to it as their child being "gone," because the drastic changes in such a short period of time make it seem like the child is a completely different person in the same body. PANDAS is often misdiagnosed as Autism, Tourette's, or PDD-NOS to name a few.


Miggy: I'd like to hear more about your personal experience with PANDAS. How old were you when you first got it and how did it affect you and your family? Do you remember what it was like day-to-day? How did your parents handle this and when and how did you get help?

Elise: It's difficult to say for sure when I first got PANDAS. I was a pretty normal baby and walked and talked on schedule. When I was a toddler, though, the odd behavior started. I started having extreme separation anxiety at preschool and would cry whenever my mom left. I would wake up screaming with night terrors and had huge meltdowns over nothing. Like most kids, I picked up lots of germs from school and would get sick, but I never had a sore throat so was never tested for strep. These symptoms would wax and wane, but were never severe enough for my parents to think much of it.

When I was 10 years old, I tested positive for strep throat and was sent on my way with ten days of antibiotics. Just a few weeks later, I suddenly developed OCD. I became obsessed with complicated "rituals" that took hours to complete. I had extreme anxiety and refused to go to school, afraid that I would throw up. I also had crazy mood swings and would kick doors and scream for hours. I felt so guilty for what I did, but I truly couldn't help it. We went from doctor to doctor, but none could give us an answer as to what was happening. After trying everything from homeopathy to talk therapy, my parents decided to take me to a psychiatrist. I was diagnosed with OCD and anxiety and put on medication.

In the fall of 2016, I had a major relapse of my old symptoms as well as some new ones, and we finally connected the dots. I was diagnosed with PANDAS on October 13th, 2016.

Elise on the far right
Miggy: In your email you said it took 10 years to get the help you needed. Is PANDAS something that has been cured or is it a condition that you still manage? Do you have any fears about PANDAS and how it will affect you long term? On the flip side, now that you've found some answers, what are your hopes and dreams for life?


Elise: Unfortunately, I was only very recently properly diagnosed. We tried a few months of antibiotics, a standard first line treatment for PANDAS, but it wasn't enough to stop my symptoms. We traveled out of state in April to see a specialist, who recommended I get a treatment called intravenous immunoglobulin, or IVIG. This will "reset" my immune system and stop the autoimmune attack on my brain. A single IVIG infusion costs upwards of $10,000 and is not covered by insurance. I'll receive this treatment in June, and I'm very hopeful that it will help me to finally resume a normal life.

I definitely worry that I won't ever get better. As much as I want IVIG to be the answer for me, I know that it doesn't always work and that patients often need multiple treatments, especially for someone like me who went untreated for years. However, after so many years of not knowing what was wrong with me, having a diagnosis and knowing we're on the right track towards recovery is such a relief. My only dream right now is to live a normal, symptom free life!


Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situation?

Elise: Having a condition with the same name as a giant black and white bear definitely lends itself to humor! I've gotten used to getting confused looks when I tell people I have "pandas." Recently, someone in a Facebook group asked if anyone else in the group had PANDAS. Someone responded, "I would love a panda, they look cuddly but no."

We also like to laugh about all my dismissive doctors. It's more fun if they have a Russian accent.


Miggy: I can imagine that since so many doctors dismissed you and your condition, that perhaps other friends and maybe even family did as well. What was the best way for people to respond to your or your family while you were in the depths of PANDAS? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Elise: I was definitely dismissed, by friends, teachers, and sometimes family. I've been told that it's "just anxiety," or that I was just being dramatic. My teachers didn't always know how to accommodate my needs and insisted that I come to school, getting annoyed when I wasn't able to. I guess they didn't realize just how sick I was, and how stressful and traumatic going to school was for me.

In hindsight, I'm not sure that there's anything friends and family could have done differently. At the time, we didn't have answers, so there was nothing I could tell them when they asked why I had appointments all the time or why I left school everyday before lunch for months. Now that I have a diagnosis, people are better about it. The advice I would give is to just try to be understanding, even if you don't completely know what's going on with someone.


Miggy: PANDAS is rare and not many people have heard of it. Can you tell us some of the signs that parents should look for and what they can do if they suspect their child may be affected by PANDAS? 

Elise: I'm so glad you asked this question, because PANDAS is very treatable when caught early. It's actually not rare, just rarely diagnosed, and 1 in 200 kids are affected. If your child or a child you know develops symptoms such as OCD, tics, or anxiety, especially after an infection like strep throat, PANDAS is worth ruling out. The best way to do that is to visit a doctor or specialist familiar with diagnosing and treating PANDAS. A list of "PANDAS friendly" doctors can be found at pandasnetwork.org, along with tons of information on diagnosis, treatment, and more.

Often a pediatrician will say your child doesn't have PANDAS because it's rare, or that it doesn't matter because the treatment would still be the same as "garden variety" OCD or tics. That is NOT true! If the answers you're getting don't feel right, don't be afraid to keep pushing for the right ones. You know your child better than anyone.

Miggy: Is there anything else you'd like people to know about your, your journey or PANDAS--either about what it's like having PANDAS or how they can help someone who has the condition?

Elise: If someone in your life is affected by PANDAS, believe them. Send them a text, bring them dinner, show them that you care and are thinking about them. PANDAS can be a lonely place, and knowing that someone cares and is thinking about you means a lot.

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Elise thank you so much, this was absolutely wonderful. I always love hearing first hand accounts and it's also really important to hear from someone who is so young and who has had to learn to advocate and fight for herself in the medical arena. Unless you or a loved one has gone through a medical issue you just don't realize how much difficult this can actually be--I'm so glad you didn't give up. I'm also really glad you are sharing about PANDAS as it is something that has come to my attention only recently, but suddenly it seems like I've heard about it a few times. I know this will be really enlightening for someone out there and will maybe even be the missing puzzle piece someone is looking for. Thanks again for sharing your experience and really important information (pandasnetwork.org).  I hope your treatment goes well! Please keep us updated! And on top of it all you're an entrepuener too! Seriously check out her shop you guys--very, very cute! Like I am definitely ordering something! Best of luck to you Elise! XO

As always if you or someone you know would like to participate in the special needs spotlight please email me at thislittlemiggy at gmail dot com. 

Have a great weekend guys!
XO, 
Miggy

3 comments:

  1. This is a great piece (as always!), but fyi I noticed the young lady's name is spelled Elise some places and Elsie some places.

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    Replies
    1. Teej--thank you for noticing that! All fixed now.

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  2. Thank you so much for sharing this spotlight!

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