Hi all! So if you are in the world of having a "sensitive" or "picky" PANS/PANDAS child- I am right there with you!
As an early childhood educator by trade, I have always been in love with studying children and seeing what makes them tick; I like figuring out what things they need to grow and develop, and figuring out how I can support them with materials, experiences, or education so that they can blossom independently.
I think my children chose me for a reason. I have been blessed with two extremely interesting, intelligent, loving, and sensitive children. Their sensitivities wax and wane with PANS symptoms presenting or remitting, or just with phases.
I use some tricks and tools to help move through this.
1) Sensory Play
Sensory play is your best friend, and their best friend.
"Sensory play is for babies and toddlers!"
Says who? My almost 7 year old and 4 year old still love sensory play.
It's novel, it's weird, it's materials they get to use differently than their normal function.
What isn't to love?
What does sensory play have to do with eating foods, medications, or supplements?
A great explanation from Feedingbliss.com explains,
"When trying to help your child eat a greater amount or variety of food, it is easy to become focused purely on food consumption and exclude food experience. However, taking a step back from the eating focus and implementing food play could be beneficial for your child’s food relationship.
Problem feeders, or those who eat less than twenty foods and avoid major food groups, may respond better to play focused food activities.
Sensory food play can increase food novelty and therefore reduce food neophobia: the fear of new things, specifically foods.
Visual experiences of food and learning to eat can play a large role in kids eating behaviors. Your picky eater may reject foods based on sight, before the taste is even a factor.
Participating in food play activities can help ease picky eating habits by increasing food novelty.
Exposure and Pressure
When done correctly, food play allows for a unique way to expose picky eaters to new food items. The mere exposure phenomenon has shown how increased exposure influences food preferences and willingness to try new foods. It is estimated that a fruit or vegetable must be introduced at least 8 to 15 times to increase its acceptability. Although, some children may respond to fewer or more exposures. It is also important to remember that repeated food exposure can be translated between foods of the same group, but not outside of that food category.
When choosing food items to introduce as food play, it is best to tailor your activities to include groups your picky eater avoids.
Remember to focus on the experience, not the result.
Often times parents of picky eaters can fall into what is known as a worry cycle. If your picky eater often challenges mealtimes and eating, it can be easy to put more pressure and stress on their diet. While the concerns for your child are understandable, this can lead to a spiral of increased resistance. Relating to this cycle of worry is the pressure paradox.
Mealtime pressure can teach kids to eat for the wrong reasons, decrease appetite due to anxiety, or even reduce overall liking of foods. Bribes such as rewarding for taking so many bites and distractions like electronics are all various types of pressures. Even sticker charts or cheering are considered pressures. While presented more positively than others, they can still create short term results and prevent long term eating behavior success."
This website has some great ideas for sensory play:
#2 Movement before Meals/Med.s/Supplements
Some children have difficulty sitting still at the table ( I have one of those for sure.) Or some children are sensory seekers and have needs in their body and mind that they have to be fulfill before they can focus on doing what you ask of them.
To them, their need to satisfy their inner urges is stronger than their need to listen to you. Taking medications, supplements, or eating food isn't as important as their need for satisfying their sensory seeking needs.
If your children are taking medications/supplements or eating at a time of day that is difficult for them to focus or is after a stretch that you know they have had to sit still or focus for a long period of time, allow them a chance to move before you direct them to ingest their medical supports.
Some things to try would before dinnertime and/or taking mediation(s):
-Play music and dance together
-Head outside for some sensory exploration time in nature.
-Give your a task in the home to help with- lifting, pushing, or pushing something heavy like a laundry basket.
-Jump on a mini trampoline or a bed.
-Play tug of war.
-Hang upside down.
-Swing on a swing.
-Spin in circles (carefully.)
-Create a mini obstacle course out of: dining room chairs, pillows from the couch, and whatever else you have about. Have your child leap from pillow to pillow, then climb over the chairs, and weave around whatever else you lay on the floor.
-Roll a big yoga ball over your child and pretend to "flatten" them.
-Do a push up, sit up, or jumping jack challenge with your child.
The basic point here is to get them moving- pushing, pulling, lifting, jumping, spinning, stretching, applying pressure. Engage their vestibular sense, and their kinesthetic sense.
Feeling like they need to engage these senses may be a point of distraction for your child, and they may feel like they need to fulfill urges related to those senses before they can listen to you and do what you ask of them.
#3 Try to "spice it up".
I'm not saying that you have to teach your children that medicine is fun or make a big crazy production out of taking pills and supplements- that wouldn't be helpful at all. However, for a lot a children there comes a monotony about taking so many things over a longer period of time- especially when the children don't see a direct measurable positive effect of what they are taking day to day.
Medication time or supplement time may become more of a battle than it's worth, and children might start to get resistant to the idea of taking anything medically related all together.
We, as the parents responsible for their health and well-being, don't need that.
Some things I try to "spice up" medication/supp.s time, or make them more enjoyable:
-Use colored tints in the water I mix supplements in. (visual stimulation/distraction)
-Allowing my older child to practice opening pills (supervised of course) and adding them to liquid to drink themselves. (fine motor development, and allowing them to be responsible for preparing what they take)
-Choosing their own new foods, or creating new (fresh pressed) juices to mix their powders or liquids into. (creative ownership & novelty)
-Playing a favorite song of theirs while they take their medicine. (auditory stimulation/distraction)
-Taking it in a different location of the house (visual/auditory distraction)
-Allow them to squeeze and manipulate a textured object while they take their medicine (tactile sense engagement/ distraction)
-Give them a spice they enjoy the smell of to sniff before and as they take their medicine. (olfactory sense engagement/distraction)
#4 Work with a variety of different scents, textures, visual cues, and tastes.
When offering food (or supplements or medications mixed into foods) in regards to "picky" eaters, you'll want to offer a wide variety of different: scents, textures, visual cues, and tastes for your child to experiment with so that they can have different experiences.
In our house we choose 2 vegetables each night to go with dinner. I make each veggie in two different ways:
or sometimes even frozen because for some reason the kids like that, and I'm not here to question them if it goes in their mouth.
The kids have 4 options for veggies in the middle of the table and are encouraged to try the ones that interest them and then pick 2 for their plate.
(If you are just starting this you may want to allow them to pick only one. Up to you.)
Over time my kids have become more curious and usually try everything on the table, even if they don't end up liking it.
I also use visual engagements like making pictures, or patterns with food on their plates. Some times they forget about what they "don't like" and begin eating because they are engaged with the picture instead.
To engage smell, simply try different spices in your cooking. This will affect the taste and give more options there too.
Don't loose heart right away of your kids still are "picky", Children usually need to be offered a new food as many as 10-15 times before they will eat it.
#5 Introduce new foods, medications, and supplements slowly.
When children are sensitive, they respond in a big way to every thing. This can cause them extreme angst when they have a negative sensory experience or a side effect from taking something- leading to them becoming resistant to taking or eating anything in the future.
In regards to "sensitivity"/reactions from foods, supplements, and medications, it is best to keep a very thorough and detailed log for your child. Try to note what they are taking, how they are taking it, what the reaction is, and when you gave it.
Note any successes, and any reactions or negative responses to discuss with your child's dr. Maybe there is a different form of what you are trying to give them that may work better- pills, liquids, sprays, patches, or shots. The thing you have to do is note as much as you can, reflect on how it went, and keep trying.
***Ooooh! A last thought I forgot. My child is very not into needles, so for any shots she has to take I give them when she is 1-1.5hrs into sleeping at night. I've found this is the hardest time to wake her. Shots are way easier this way. She is aware I do them at night, I do not sneak them.
I hope this helps families with PANS/PANDAS kiddos. Let me know if you have any other ideas to share.