Carrie knows firsthand how much PANS PANDAS can take a toll on parents and the family. She shares her story to let other parents know there is light at the end of the tunnel, and during the healing journey, they are seen and heard, even on days filled with doom and gloom.
Healing from PANDAS is possible. This is a sentence I would say to myself over and over again on some very dark days. I figured if I said it enough, maybe, just maybe, I would believe it. What I didn’t realize was that since my son’s diagnosis and two years of treatment, he was actually getting better. It’s been a hard and bumpy road, but little by little, he is healing.
They say healing isn’t always linear and this has certainly been the case for my son. Some days I felt like I was losing hope, but as one door closed, another would open. Healing from PANDAS is possible. Little by little, my son heals and will continue to heal. And little by little, my family and I started to heal. Now I can see clearly just how far we have all come.
What does healing from PANDAS look like? For my family and me, it was:
- Learning a new medical language about a complicated condition.
- Remembering that everything is not your fault.
- Realizing that you also have some of the infections as your child, such as Lyme and Bartonella.
- Feeling deeply sad and guilty that you passed on infections to your child.
- Feeling overwhelmed at the idea of treating yourself, your son and his sibling for Lyme and Bartonella.
- Wishing you had figured out the diagnosis much earlier; in hindsight, it was so obvious.
- Becoming an expert at anticipating and containing giant tantrums.
- Finding ways to get your child to take multiple gross tasting medicines.
- Noticing small, subtle differences in his behavior for the better.
- Celebrating when your child learns to swallow a pill because there are so many meds and supplements.
- Journaling daily meds, moods, and any little changes you might see.
- Having some doctors believe you and others tell you they do not.
- Sleepless nights because your mind is filled with worry.
- Feeling scared, really scared.
- Feeling exhaustion, physically and emotionally.
- Feeling boredom from having to put life on hold.
- Getting pinches, shoves, and slaps and flinching when your angry child comes near you.
- Getting bloodwork for the family to make sure we are not continually infecting each other with strep and mycoplasma pneumonia.
- Advocating for my son at school and knowing when we needed to put a pause on learning and put him on medical leave.
- Dropping all my own things, including my own extracurriculars and spending time with friends.
- Feeling grateful that I was a stay at home mom. I don’t know how parents who work can focus on their job.
- Taking a minute to wash my face at night. This becomes my new self care.
- Crying to a friend when you are overwhelmed with sadness.
- Knowing when to call your own doctor as the caregiver burden is a tough load to carry.
- Asking for help from family and friends (something I’m not good at).
- Trusting your gut even when doctors don’t believe you.
- Finding doctors to work with who you trust and don’t add to your anxiety.
- Missing your spouse even though he is sleeping in the bed next to you.
- Split parenting so your other kids have at least one parent’s attention.
- Texting with your other children because your PANDAS child screams whenever you try to talk to other family members.
- Eating dinner separately because it just doesn’t work all together.
- Sitting still in the quiet because you don’t have the energy to do anything else.
- Always trying to find a workaround for sensory issues-smells and sounds were a big issue.
- Taking each day or hour, or minute one step at a time.
- Not holding a grudge for what happened yesterday.
- Trusting your gut when you know meds or supplements are actually making things worse.
- Planning ahead for situations that you know won’t go well and trying to figure out which way is the least awful.
- Knowing when you need to throw in the towel because everything you are doing to treat your kid isn’t working and you need to start all over.
- Being accepted into an out-of-district school placement for a therapeutic school and feeling like you won the lottery.
- Dropping your child off at a place where they are not phased by oppositional behavior and they know how to handle him.
- Worrying about what the next flare looks like but knowing that we will never go back to the beginning, and we will get through it easier this round.
- Having wonderful teachers and therapists that slowly start bringing back your child in a school setting.
- Seeing your child learn again.
- Watching your child write after refusing to do it for 7 months.
- Wondering if your child’s handwriting will ever return to what it was before the last flare.
- Accepting some skills may never come back.
- Realizing that you are ready to make changes in your house.
- Trying different parenting tactics when nothing is working.
- Staying calm when inside you want to scream but you must be the regulated person in the room to help regulate your child.
- Breathing, just breathing….sometimes it’s all you can do.
- Not feeding the beast, not letting his illness control him.
- Having your child learn how to self-regulate and take breaks when he needs to.
- Snuggling on the couch while watching a movie, something he could never tolerate before.
- Feeling relieved when your child learns to ask for your help instead of freaking out when they just needed assistance
- Feeling joyful when your 8 year old finally has the patience to be able to work through hard things and learns to tie his own shoes.
- Crying happy tears when you watch your child learn how to ride a bike.
- Watching your child be successful and start to feel good about themselves again.
- Watching your child jump waves in the ocean.
- Watching your three sons laugh and play together again.
- Feeling relieved that there is much less screen time.
- Playing board games as a family.
- Eating dinner together as a family and even eating out together at a restaurant.
- Watching your child be open to trying new foods and not be so restrictive in his eating.
- Not giving in to attention-seeking behavior.
- Being able to go on a date night with your spouse.
- Dropping your child off at a friend’s house for a playdate.
- Watching your child just being a kid.
- Realizing that you and your child are forever changed from this experience.