Holiday Survival Guide for PANS/PANDAS Families

NEPANS wishes everyone and their families a wonderful, healthy, grateful Holiday Season. Below is a Holiday Survival Guide for PANS/PANDAS Families with a few highlights from our board members.

Holidays are fun. But holidays are stressful even without throwing an autoimmune disease into the mix. Take a deep breath. These are your holidays, no one else’s. Holidays are not a litmus test determining how happy and successful your family is. The holidays get packed with activities pretty quickly. You can say no to events, you don’t have to drive into town to see the tall tree, your food is not going to grace the covers of a magazine, you are not going into the hall of fame if your kids act like angels, and that two page yearly recap you wanted to write up, well skip it.  The important thing is to be around family, spending time, trying to catch a breath and being thankful. That is when the little things matter; be thankful for the little things.

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In a Nutshell

• It’s Your Holiday. Be completely traditional. OR. Take some traditions but leave the rest. OR. Make completely new traditions. Just be realistic about what your family and your child with PANS is capable of and what will make everyone happy.
  
• Make a Plan. Make it reasonable, don’t overbook but plan something to make it special. And make a back up plan just in case. Try to plan time to relax.
• Prep for Change in Routine. The plan helps.
• Laugh. Don’t forget. It is very important.
• Be Thankful.

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The Family Gathering
We know our incredible PANS/PANDAS kids are dealing with an extremely tough disease. Some are great about rallying behind your family, understand the complexity of PANS/PANDAS and figure out ways to help out. But then there are others who just simply don’t and are flat out not supportive. So if we are gathering with family and friends, sometimes in order to make things work, we need to plan and put some supports in place to make them feel more comfortable, which in turn can make our children feel more comfortable. We also need to make plans that will support our children so they can enjoy the holidays to the best of their ability.

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Is It Worth It?
Yes, you want your family to actively participate in family events. So do it if you can! This question is not to deter you from filling your schedule with activities.  But if you are not sure your kid can handle a situation then perhaps it is best to stay home and plan accordingly. Is it worth the exposure to more germs, the added work, the change in routine, the stress of making everything seem “normal” or “perfect” for a few hours or a couple of days?  Is it worth packing up and going to their house for the holiday? Is it worth having people over? Is one of them easier for you and your family?

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Awareness & Understanding
Do your own PANS/PANDAS awareness training with your family ahead of time.  Not everyone will embrace the information but some will. Some people actually don’t know how to ask; they feel uncomfortable broaching the subject but are often happy to have you start the conversation.  Be sure to explain how the symptoms affect your child.  Tell your family and friends what they can’t talk about in front of your child; what may seem obvious to us won’t necessarily seem obvious to them.

• The Facts. Some people want to read about PANS/PANDAS from an organization like NEPANS or alike. They want to know what the experts say…. Not “just” a parent.
• Your Child. Because you are the expert on your child, breakdown your their symptoms, how they manifest themselves, how this holiday exacerbates it, what if any plans you will have in place to mitigate them.

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The Plans - (Lots of them)

Canceling Plans: If there is a chance you will need to cancel plans, find out from your host how far in advance they would like to and try to honor that. 

Length of Trip. Whether you are coming or going, maybe this holiday needs to be a little shorter. Remember, family and friends want to feel appreciated. Tell them you cherish every moment even more.

Where to Stay. Do your in-laws expect you to stay a few days? Will they be upset if your child “doesn’t pull themselves together and act right”?  Staying at a hotel may be a better option but explain this is a compromise; otherwise you would have to cancel the trip. Sometimes staying at a hotel with a kitchenette is helpful so you can prepare a few meals yourself.

Is family Coming to You? Where will they stay? Maybe your guests need to stay in a hotel to allow for some down time at home in the morning or later evening.

Plan a “Safe Spot”. So you are at Grandmas, now what? This could be a long day… In advance of the holiday, talk to Grandma about her grandchild’s possible needs. Designate one room as a “safe spot” your child could retreat to.  If you can, spend a little time in the room before your child needs to and make sure it is set up with whatever he/she needs.

Off Limits! Yes you have graciously opened up your home but your kid’s room is off limits.  That is their safe space; honor it. Let guests know ahead of time so you don’t have to discuss it in front of your kid because that can embarrass them.

Plan an Exit Strategy. Let family members know ahead of time you may be only able to stay a short time or you and your husband will take shifts to allow you both to be at the party while your child has more rest time at the hotel.  Also, make sure your immediate family is on the same page on how to identify when the right time to leave is. You could check in every thirty minutes, leave before the meal, determine which behaviors are the tell tale sign of trouble, or even when your realize Aunt Kate doesn’t have allergies but is coughing up a lung because she is actually sick.

Support Needed!  Ask for help before the event starts in case you need to rest with your kid in the safe spot or quickly leave. Make a plan for who will take care of the siblings that want to stay or who is going finish up cooking, etc.

Bring Everything You Need

• Chargers. Not just the one.  Extra. They always break. Always. Or is that just our house?
• Food you know your kid will eat. Remember to educate your family ahead of time if your child has severe food restrictions/aversion due to PANS and what it means for your kid.
• Toys, Books, Xbox.  Yes, we know people who have brought it.  Did it mean their kid got through the day? Yes.  Worth it? Yes. Did a family member scoff? Probably. Do you care? Try not to.

Prep Your Kids. Below are some suggestions but of course every kid is different so some may not apply

• Create a timeline if it helps
• Show your child pictures of the house you are going to.
• Talk about expectations. Are they expected to stay at the table the whole dinner?
• Talk about how to respond to those who are overtly judgmental.
• Talk about how to identify when to leave early or retreat to the designated safe place.

Let the Kids Be Part of the Planning.  Some kids are not going to participate the entire day but you want them to feel included.  One way to do this is to make the holiday not just about the actual day but also about the days leading up to it.

• Are they crafty? Let them make place cards even if you are not normally that formal.  
• Let them plan the menu with you. This is especially important if your child is having food issues related to PANS.

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The Back Up Plan
So you are all set to go to Aunt Kate’s.  You planned for the good, the bad and the ugly.  But you wake up and realized there is no chance you are making it.  NOW WHAT!!!!  Oh wait, you have a little bit of a plan... breathe.  Oh and don’t forget to call Aunt Kate; remember you already warned her that this might happen which is why you did not sign up to bring the turkey, just the lima beans which no one really wants anyway.

The Meal.  Maybe you are Julia Child and can whip up a full Turkey dinner without breaking a sweat while taking care of your kid who is in a massive flare.  Or you really can’t stand Aunt Kate’s cooking, you thrive on no sleep and cooked a full meal and froze it ahead of time just in case.  Or more reasonably, you can take a few minutes now to plan ahead, decide on a few things that you would eat anyway during the week, are fairly adaptable for the particular holiday and have them ready to go. Or just let everyone eat pie, get your kid through a rough day and be thankful that you made it through another day.

• See below for Low Key Holiday Plans

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The Low Key, We’re Dealing with PANS, Take a Breath Holiday
Your traditional holiday is NOT happening this year.  How do you make it special?
 
Sometimes it just is not going to work out the way you have always done it.  That is okay!  You are doing the most important thing already: taking care of your family and sick kid. You can do two things.
One: Simply do your best to ignore this holiday even exists.
Two: Figure out how to make a new way work that is easy and fun.

• Set up a marathon movie/tv show plan.  Let everyone choose a movie or a show.  Watch together. Have a fun together.  One rule: No depressing movies allowed.
• Dress up a little.  Even if that means your “good pajamas”.
• Get creative. Get a few craft kits and have everyone do it. Even if you don’t have a crafty bone in your body and your husband is really paying more attention to the football game. The point is to do something together.
• Go for a walk.
  

• Have the most non-traditional holiday meal you can imagine because you are not having a traditional holiday! Peking Duck?  Or just eat dessert. Lots of it.
• Or if your kid is having food issues due to PANS then do not focus on food at all. It does NOT need to be a food holiday to be an opportunity to be together and be thankful for the little things.
• Ask your kiddo with PANS/PANDAS what they want to do. Ask the siblings what they want to do.
• Play Games. Pull them all out of the closet and do a round robin.
• Make a Gratitude Jar. Count your Blessings. Find the Good. Yes we know how hard PANS/PANDAS is. Look around and remember what you DO HAVE to be grateful for.  They might be small things but they matter and they add up.
  

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