My kid was diagnosed with PANS/PANDAS. Now what?

Finding out that your child has PANS or PANDAS is a mix of terror and relief.

Terror at what this means, what your child has become, and the thought that you’ve just lost the beautiful future you envisioned for your precious child.

And yet there’s a sliver of relief that this thing has a name that you can Google and learn more about.

I’m so glad you found this post. What I’m about to share with you will expand that sliver of relief and add hope. 

Because that future you dreamed of your child having is not lost.
Not by a long shot!

Managing PANS/PANDAS is a lifestyle change that’s not much different than any other. It might feel restrictive at first (like if you decide to cut out things like gluten and dairy) but with all the alternatives available today, it’s really not that hard.

Right about now, you’re probably feeling frightened, lost, and a bit confused. Don’t worry, that’s a perfectly normal reaction to receiving the news that your child has PANS or PANDAS. I’ve been there and I felt the same as you do now.

The good news is, there is help available. 

I won’t lie, there’s not a lot of information out there, we’re still learning about the implications of this condition for our kids. But, most of the information that is out there is provided by people who have learned through trial and error with their own kids. So you can save yourself a lot of error by learning what has worked for others.

Of course, what works for one kid may not work for the next one. But talking with someone who has already been through it will give you a good place to start. If you’re looking for a group of parents who share tips and stories, consider joining our private community here. In the meantime, I’ve compiled a list of the top 10 things that you should know as the parent of a newly diagnosed kid.

a child hiding under a stack of pillows on the couch because he or she is overwhelmed and has anxiety about the world as a result of a PANS-PANDAS diagnosis or another learning difficulty.

The top 10 things you need to know now that your child has been diagnosed with PANS/PANDAS

1.       You MUST look after yourself. 

Self-care is vitally important. You’re going to experience frustrations, noise, worry, and stress, to a level that you may not have experienced ever before. Scientists say that it’s comparable to the PTSD that war veterans experience. It’s no small thing. The best way to cope with it all is to keep your own battery full so you have enough energy and calm to help others.

What does this actually look like?

 Make sure you get at least 30 minutes a day to yourself. And not the last 30 minutes before you fall asleep either. 

Have a soak in the bath, read a book, chat with a girlfriend, meditate, it doesn’t really matter. The point is, make sure you do something for yourself, every day.

Also, get enough sleep. If possible, get 8 hours of sleep and sleep through the night. 

I use doTERRA’s Serenity capsules almost nightly to make sure I fall asleep easily and stay asleep (but they don’t prevent you from waking up if your baby needs you).

2.       You will need to ask for help sometimes. 

I know, this one goes against the grain, but you need to remember that other people (overall) want to help. So, let them. Make sure you develop a close, tightknit circle of people you can call on when the proverbial poop hits the fan. Because it will.

3.       Changing your child’s diet can have a huge effect on your kid’s symptoms. 

Since switching to the GAPS diet, Xavier’s symptoms have become much easier to manage. His anxiety has reduced dramatically, he sleeps better and he’s able to focus better at school.

4.       There are alternatives to pharmaceuticals. 

Yes, there are, but you may not be aware of them because your doctor may not be a supporter. 

We live in as clean and nontoxic environment as we possibly can to help reduce my children’s symptoms. Essential oils are used as cleaners, air fresheners and personal hygiene products. We use a lot of herbs and essential oils in our cooking to provide flavour without loading us up with salt, sugar, and fats.

5.       Your focus needs to be on preventing triggers rather than managing symptoms once they appear. 

That’s one of the main reasons why we eat such a clean diet. Building up our kid’s immune systems, and ours, means that we’re generally a lot healthier than we were in the past. That means we experience less colds and flu and that we drastically reduce the odds of any of us getting a strep infection. 

Focus on prevention.

6.       Some days will be better than others. 

Like any condition or situation, some days will be easier to cope with than others. But remember – you’re in this for the long haul. There’s no quick cure for PANS or PANDAS and it’s going to take some time to find what works best for you and your family.

In the meantime, read what you can, talk to people who are in the same boat as you, take medical advice. Also consult alternative healers and take the best you can from each practice. 

7.       Funding may be available in your area. 

Nobody likes to think about money concerns when it comes to the health of your child, but the fact is, having a condition, of any sort, can give you extra expenses that you probably haven’t budgeted for. 

Talk to your Doctor or adviser and find out what’s available in your area and what the criteria is.

8.       You are in control of what happens next. 

There are plenty of people out there who will have opinions about your child’s diagnosis, whether they do or don’t have all the facts. 

There are also people who can give you advice, such as medical staff, alternative therapists and other parents. Again, take the best of what they offer and remember that you are in the driving seat

Although it may not feel like it yet, you are the expert on your child’s behavior. And you’re going to keep learning as you go.

9.       You may have to educate your child’s school and teachers about PANS and PANDAS. 

If you’re lucky your kid might have a teacher who is interested in learning more about their condition, or may even have experience teaching a child with similar conditions. 

If not, you can also consider home-schooling. For some kids, this is by far the better option. But again, only you will know the answer to that.

10.   I’ve saved the most important you need to know for last: You’re doing a FANTASTIC job! 

I’m sure it doesn’t feel like it right now but as a parent, you’re doing amazing work. You’ve dealt with the cards you’ve been dealt and things will get easier now that you have the diagnosis. 

You can start learning more about the condition, you can start making better, more informed choices for you and your family, and you can get some help. You’re doing well, and you’ll continue to do well.

The rewards outweigh the problems

a young child holding up both hands which are covered in every colour of paint. The child is peering through his or her fingers with a small smile. There is a white ribbon with blue text across the bottom of the photo which says Your child is star shaped. Don't let the world try to fit them into a square hole! as an inspiration to parents of kids with learning difficulties.

Having a child with learning difficulties comes with extra stress and worry but the rewards are truly amazing. 

The look on your child’s face when they triumph over something that they struggled with is priceless.

And I promise you, if you haven’t seen that face yet, it’s coming.

You will see that look, so please, make sure you come right back here to tell us about it.

As a parent who has experienced this, what would you add to this list?

Or as a parent who is new to this, what questions do you have?

Leave a comment below and I’ll gladly respond!

a young girl at the doctor's office getting a diagnosis from a female doctor who is smiling in a friendly manner and the words PANS PANDAS Diagnosis is written in bold blue letters under the photo.

About Jo Dissanayake

A certified kinesiologist, PANDAS survivor, mum of two beautiful children – Erykah 15 and Xavier 12 – and I've been married to my soulmate Shami for 17 years.

I created the Meltdown Eraser and A Gut Instinct to share the life-changing information I learned about learning difficulties, behaviour problems, and just how much clean living makes a difference. For every mumma out there that feels like she's at her wit's end, we have the solutions and support you've been dreaming of!

Click here to learn more about how Jo can help you and your family erase the meltdowns