Your questions answered! How we’re {really} doing, what life with PANDAS/PANS is like, and more

Your questions answered! How we're {really} doing, what life with PANDAS/PANS is like, and more

Our family was overwhelmed by the outpouring of love and support you gave us after the family update I shared earlier this month. In fact, it was the sixth most-read post of all time here at Wonderfully Made Living! Many of you asked how we’re doing in the midst of PANDAS/PANS, life, and more.

In the wake of a challenging year, my answers aren’t easy. But I want to share with you honestly because I know if we’re struggling, other special needs families are, too. And the more honest we are about our joys and our struggles, the more we can help one another.

How does PANDAS/PANS affect Jack?

Because of the severity of Jack’s PANDAS/PANS, he is highly susceptible to, and disproportionately affected by, illnesses. Strep, upper respiratory infections, and stomach viruses, in particular. They affect him not only physically, but neurologically as well. When Jack is sick, he has uncontrollable anxiety, OCD, and tics that come from his body’s autoimmune response to illness. Most viruses and illnesses last anywhere from one to three weeks at a time before fully leaving the body, so he can have this severe reaction for weeks on end with very little relief in between – particularly in seasons, and in a region, where viruses seem to come back to back (to back). It is absolutely heart-wrenching. It is also extremely wearing.

When Jack was first diagnosed with autism, I felt overwhelmed but also relieved. We finally had answers to his behaviors and struggles. And I knew the diagnosis would open doors to the therapies and services he needed. When he was diagnosed with PANDAS/PANS, I felt relieved to have a diagnosis. I also felt utterly panicked, though, because there is no cure for the condition. There’s not even a sure course of treatment. Over time, I became increasingly forlorn because after months of trying different courses of medication and treatments (with the guidance of his team of doctors and specialists), Jack wound up on medical leave from school again.

Your questions answered! How we're {really} doing, what life with PANDAS/PANS is like, and moreWhat are we doing to treat PANDAS/PANS?

We have tried several treatments over the past year, with several more to try in the future. To give you a better idea of our journey with medical treatments so far:  for a time, the treatments work. And then they don’t.

The antibiotics, anti-inflammatories, probiotics, and more work for a time. During that time, we track his health and behaviors meticulously, monitor for improvements, and, when improvement happens, we feel like we are on the road to recovery. In fact, we had such a wonderful period of time over the summer when the PANDAS/PANS was under control that Jack returned to his full-day school program this fall. But, eventually, the medications stopped working and he was placed on medical leave again. And we started from square one all over again.

His team of doctors has largely been exceptional, but are often just as puzzled as we are about the complexity of Jack’s case.

How is this affecting our home life?

Behaviors

Jeff and I are doing everything we can to manage the behaviors that result from PANDAS/PANS, but, truthfully, when Jack is sick there is not much we or anyone else can do. Our entire focus is on keeping him safe and loved. He is home indefinitely on medical leave and we are doing all we can to bring him relief, maintain his studies, and stay in touch with his friends and classmates as best we can.

Siblings

Jack has two siblings – Kristen and Connor. Though different from Jack’s, Kristen also has special needs. She has her own team of specialists and we just found out she will require therapies and most likely an IEP moving forward as well. We need to tend to her and her baby brother’s needs just as much as Jack’s. We also need to have ongoing conversations with them to explain why Jack has such difficult weeks. And that neither they nor he did anything wrong to experience what they are experiencing.

Jobs

Things get more complicated when you bear in mind that my husband works full-time and I work 20 hours a week. We are managers at both of our jobs, managing not only teams of people but also large projects. Our commutes are an hour and a half by foot and train each way. Not working is not an option, as we must maintain our incomes in order to maintain the level of care our children require and, frankly, to keep the roof over our heads.

Appointments

Our children have several specialist appointments every week, usually at hospitals which are over an hour from our house. Jeff and I juggle the appointments between work, caring for the children, the house, and life in between. Going to these appointments is not simple or straightforward. Last week, Jeff took all three children to Massachusetts General Hospital for one of Jack’s appointments. It took four hours of travel on four trains and on foot to get there and back with the children, their lunches, snacks, diapers, etc. in tow. Even when we drive, it can take hours to get to and from appointments.

Marriage

I plan to write about this much more in 2018, but this journey has definitely impacted our marriage. In some ways, it has brought us closer together. In other ways, it has pushed us apart. There is so much I want to share about marriage and special needs in the New Year because it is incredibly important. For now, suffice it to say that if you know a couple who has special needs children, my call to you today is love on them as much as you possibly can. Empathize with them. Listen to them. Care for them. Pray for them. And love them. I truly can’t emphasize the importance of this enough.

Your questions answered! How we're {really} doing, what life with PANDAS/PANS is like, and more

Are there any ways to avoid illness?

We live in New England, which is a hub for winter illnesses. Flu, pneumonia, stomach viruses, you name it, it’s here. It feels like each week brings a new virus and, in turn, a new PANDAS/PANS flare up. In the past month our children have had Hand, Foot, & Mouth, strep, the flu, pneumonia, stomach viruses, upper respiratory infections, and common colds.

I’ve extensively researched ways to boost their immune systems and asked every doctor we’ve seen for their advice. We’ve done everything we’ve been instructed to do: feed them healthy, homemade meals – check! Feed them fruits and vegetables – check! Give them probiotics – check! Institute consistent hand-washing – check! Give them this or that supplement – check! You name it, we’ve done it. They still get sick.

Also, like many special needs children, ours do not sleep well. Kristen wakes up at midnight every night, Jack at 3:00am, and Connor at 5:00am. I can’t remember the last time Jeff and I got a full night’s sleep. He and I normally have strong immune systems, but lately, we’re so depleted from the lack of sleep that we’re more susceptible to illnesses and have caught pneumonia, the flu, sinus infections, and stomach viruses this fall right alongside our children. While we may get sick days from work, we don’t get days off from life.

How can you help?

This is the kindest question of all and one I always struggle to answer because I never want anyone who visits this space to feel put upon. But, for those who have asked, here are a few ways you can help:

If you’re local

  • Meals. We welcome any meals you may be willing to make. We have many dietary restrictions, so Jeff and I have to make all our meals from scratch. The children eat six (yes, you read that right!) meals each day. The cooking alone is overwhelming!
  • Light housework. I do housework for at least three hours a day and am still drowning in laundry, dishes, and general tidying.
  • Rides. Our family of five shares one car. This has grown increasingly complicated as our family has grown and our children’s needs have grown. If you are ever willing to offer a ride or lend a second car for a doctor’s visit we would be so grateful.
  • Childcare or playdates. Our children love to play. They love spending time with friends and exploring the world around them. It is extremely difficult for us to get out of the house most days for anything other than appointments, though, and that absolutely breaks my heart. They deserve to play and have fun as children should. Playdates are most welcome!

If you’re out of state

  • Pray for us. This is number one on our list. Please pray for us as we walk this journey.
  • Donate via GoFundMe. We are so incredibly grateful for everyone who has donated to help our family during this challenging season. If you feel so called, here is the link to donate.
  • Stay in touch. We love hearing from you! It always lifts our spirits to receive a kind note, message, or comment from you! You can connect with us on Facebook, Instagram, and Pinterest.

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