Carrie’s PANDAS Story

This is a part of the blog that I have been wanting to do for a long time…sharing the stories of other parents of PANDAS and PANS children, and their unique journeys to healing their precious ones (without the use of long term prophylactic antibiotics or IVIG or chemo).  I hope that this is the first guest mom post in a series of many to come!  Thanks to the moms that are willing to share their journey with the rest of us and bless us with their hard won wisdom and experience.  These stories may, or may not, use donkey milk as a part of their journey to health.  Donkey Milk isn’t always available, so I’d like to share as many different stories of healing as possible, no matter how they got there!

I feel like Carrie is one of my personal friends, though we’ve never officially met!  I am always blown away by her wisdom and great advice for other PANDAS parents on the Facebook Group, “Saving Our PANDAS”, a group geared toward natural healing.  When she agreed to share her story on my blog, I was thrilled, to say the least!  Without further ado, here it is!

Carrie:  “The story of our journey with PANDAS is an emotional one. My son went undiagnosed for at least two years and soon after his diagnosis, our daughter was diagnosed with PANDAS as well. I’ll start at the beginning and take you from the very first symptom until now…

My son, Carson, was a typical four-year-old but soon after moving into a new home his behavior had drastically changed. He became moody and emotional, even aggressive. I couldn’t take him out of the house on my own. If he started one of these new meltdowns that included hitting me, all I could do was brace for the storm. I had a two-year-old at the time and pregnant. I could no longer pick him up and take him out of a store.

He also started at that time having severe separation anxiety. Again, we thought it was because of the new house. He would scream if I had gone upstairs without him. I thought of selling our new two-story home and buying a smaller house! I could barely get around.

My husband and I were left completely confused. I called my son’s pediatrician and explained what was going on and that this was not our child’s typical behavior. She too thought it was because of the move and that he would probably calm down in a couple of months. He was already showing signs of Sensory Processing Disorder so we passed these behaviors off as new symptoms.
Then, the “pee-pee problem” started, or at least that’s what we called it. This has been one of his most debilitating symptoms. He would stand in the bathroom and just scream that he had to go again. Getting out of the house was nearly impossible and getting in the car resulted in huge meltdowns.

I guess we just sort of adjusted to this new way of life. His symptoms would somewhat ebb and flow. During times where the symptoms were gone, we somewhat forgot about it. When they returned, we just entered survival mode again.

Fast forward two and a half years. He still had all the same symptoms including this undiagnosed urgency to urinate. Pediatrician was still stumped and couldn’t find a cause. I had been seeing PANDAS online, mostly mentioned on forums by moms. I knew that tics at the time of a strep infection = PANDAS. I had no idea there were other symptoms!

We had friends over one night and their son had developed a tic. I said to my friend, “Didn’t he have a strep infection a month or so ago? I’ve been seeing this thing called PANDAS.” She took him to the pediatrician and her son was immediately diagnosed. Which now knowing what I know, is truly amazing. Some pediatricians still don’t believe it’s a real diagnosis.

I thought to myself after this incident, “How scary!” I’ve heard from others online that PANDAS is a nightmare. Little did we know that we had already been dealing with it for over two years!
A couple of months after this incident we went out to eat as a family. As my son was licking an ice cream cone, out of what felt like nowhere he started an eye rolling tic. I thought, could it really be? I took him into our pediatrician who told us it was probably caused by allergies. She did a throat swab for strep and it was negative. Hmm…but I still felt in my gut it was PANDAS.

We went on like this for two months. Unfortunately, we infected a lot of people with strep! Carson still had no symptoms of an actual infection but others around us were coming down with it like crazy. We were planning an outing to a local theme park with family and our son seemed especially off. He was tired and having lots of meltdowns.

We were driving on the way there trying to figure out what to do! I looked in his throat and although his throat itself seemed fine, he had broken capillaries all over the roof of his mouth. I called his pediatrician who said it was most likely a viral infection. Consulted Google and Google said strep. I took Carson straight to urgent care. We did a rapid strep test and negative.
I was shocked! I thought how could this be! He also started to tic even more. Thankfully, urgent care cultures their strep tests. We received a call three days later confirming that he indeed did have strep. We started antibiotics and his tic disappeared within just a couple of days and behavior improved. He was six at the time.

I brought this information to his pediatrician and she agreed that he does have PANDAS. Our pediatrician has been pretty open that she doesn’t know much about PANDAS and is not comfortable treating it. We have decided to treat naturally (except in the case of strep) so that has worked fine for us so far.

Around this time, strep spread to the rest of the family including my then four-year-old daughter. Everyone was started on amoxicillin. My daughter started having hallucinations, separation anxiety, insomnia, and would scream in her sleep. I thought she was reacting to the antibiotics! After several phone calls to the pediatrician and pharmacist, she was diagnosed with PANDAS as well.

Looking back on it all I realize now that my son had a strep infection right before all these symptoms started. It breaks my heart he went undiagnosed for so long, but I know others who have waited even longer.

My son especially still has residual symptoms that crop up anytime his immune system is triggered. We have been fairly homebound. We joined a homeschool co-op and he was constantly picking up viruses which would set off his tics. This could possibly venture into PANS territory, but I have been told once the autoimmune disease is triggered by strep, anything that triggers an immune response can create brain inflammation.

Thankfully, after much trial and error we are on the road to healing! It was hard letting go of the antibiotics. It was my safety net. However, as soon as they were stopped he would start ticcing again. It was becoming a viscous cycle and I knew we couldn’t rely on them long-term.
Our children are sensitive to Gluten, Dairy, Salicylates, and Potatoes. We are using the autoimmune protocol diet, only swapping vegetables with low salicylate ones. We add brown rice into our diet here and there.

We realized for our kids’ healing simple is best. We focus on good rest, avoid food sensitivities like the plague, good nutrition, quality vitamins (Seeking Heatlh), probiotics, addressing MTHFR mutations, low stress environment, addressing parasites (we use diatomaceous earth), and repairing the immune system through supplements (Vitamin C, Monolaurin, and L-lysine), and low dose naltrexone.

We also have to reduce video game and screen time. My son starts ticcing and having meltdowns with too much screen time, especially video games.

We’ve seen much faster progress with our daughter and I believe it’s because she was diagnosed right away. Probiotics has been the biggest help for her.

We now get complete breaks of time without PANDAS symptoms. Unless they are exposed to their food sensitives, they do quite well and it’s hard to even tell they have PANDAS. My son’s learning is still effected, something I hope that will change with time as we continue to heal.

Carrie

Carrie’s blog is Simply Life In Progress if you’d like to read more and tell her how much you appreciated her willingness to share her story here.

Blessings!

Buttercup Farm

 

 

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3 responses to “Carrie’s PANDAS Story

  1. Thank you so much for sharing your and Carrie’s stories. I am always looking for new stories and even have my own blog to document, educate and get feedback. My daughter also has Lyme and PANDAS but it took a lot of determination and perseverance over the course of a year to get to the truth. It’s such a long story (I know most of our are) but we had no clue about the Lyme ( and since we are in Southern California the doctors did not think of it as a serious possibility). A couple months after her joint pain/fatigue started she got strep. 8 days in to amoxicillin she broke out into hives and her migratory joint pain became so severe she could not function. She took prednisone only briefly because she started having bizarre behaviors (so we ended the prednisone just in case). A rheumatologist at the children’s hospital thought it could be PANDAS but the Neuro and Psych disagreed. She left with no diagnosis (they did not think she had an allergic reaction either- they just didn’t know what was going on). My daughter was misdiagnosed with Systemic Lupus by our HMO and put on immunosuppressants until her legs hurt so badly she could not walk. The specialists at the children’s hospital were adamant it was not lupus and took her off the immunosuppressants (but it had been 9 weeks). They diagnosed her with Somatorform Disorder (psychological) and insisted we see a osychiatrist. He prescribed Zoloft, which I refused. I really felt something autoimmune was going on (Her ANA levels were 1:1280). Her pediatrician would not do any further lab testing bc her dx was now psych. After a couple months of trying to “accept” a psych dx a friend sent me an interview with Ally Hilfiger about Lyme. I found an LLMD and did a western blot. I changed pediatricians and requested a Cunningham panel. Both tests were positive! We started treatment with herbals and immune support but added antibiotics. First Biaxin but then our new Ped changed her to Doxy. It’s been nearly two months in antibiotics. I think she hada herx reaction a couple weeks ago (first week back to school) bc she could not walk for 5 days due to pain. Right after that she caught a cold (the second week back to school) and she had extreme separation anxiety, emotional lability, irritation, aggression, tactile sensitivity. Her symptoms wax and wane but don’t seem to really be getting better. It’s hard to know what to do. I know some people stay on the antibiotics for years and swear they work. Our Ped is talking IVIG. I’m thinking of selling my car to help pay for it. I am starting family leave from my job so I can care for my daughter. Thanks for letting me share such a long story. I just need to vent and co-miserate but I surely would also welcome advice. I have hashimoto’s and do well on the paleo diet but my daughter is a vegetarian and has become a somewhat picky eater. I’m not sure what to do…

    • Jessie, please forgive me for just seeing this comment! I have no idea how I missed it. I’m praying your daughter is doing much better by now…can you please give me an update? If you aren’t in the facebook group “SAVING our PANDAS” I highly recommend it, it’s full of alternative minded natural moms, opting not to do IVIG or prophylactic antibiotics. Where are you located? We are in Oklahoma, but we can only sell our milk to people that pick it up on our farm (legally.) I can also refer you to a camel milk dairy and a donkey dairy that does ship his milk…just let me know. God bless you!!!

  2. Hi, no worries — I have missed some of the comments on my blog– sometimes they just pass me by. After that post she went on homebound schooling for the fall semester and then we finally found a pandas specialist in November and she retested her and started her on a whole new integrative regimen. She is taking long term antibiotics but also detox supports and a lot of other herbal supplements, nutrients, and probiotics to support her immune system. She had tested CDC positive for Lyme disease and also positive for Bartonella, babesia, erlichia, mycoplasma and more so that explained a lot! She went back to school in January and completed the semester successfully. She’s doing so much better and never needed IVIG. But we are still not out of the woods. I’m hopeful she is in her way to a full recovery. Thanks for responding and I wish you all the best!

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