Are you completely lost with a recent Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections, also known as PANDAS, diagnosis for your child? Not only has your child changed overnight, or has slowly been slipping away from you day after day, but you have been given this scary and mysterious explanation. You are definitely not alone.

I remember when my son was diagnosed with PANDAS. I was relieved to have an answer, but there was so much left unanswered. It has been a journey of healing for us over the past five years. Looking back, there are 5 things I wish I would have known sooner.

1. Find the right provider

Finding the right provider is key to getting better. After I scoured the internet with ‘my son had strep now won’t go to school’ and found out about PANDAS, I took my son to his pediatrician. My son had been in the week before to be treated for strep throat. It was evident to the pediatrician that a very different kid came into the office that day. I carried my 6 year old in crying, because he was afraid. He even hid behind the exam table. His pediatrician diagnosed PANDAS on the spot but did not offer any treatment.

There I was scouring the internet again looking for treatment for PANDAS and a provider. I found one provider in our area listed on the Pandas Network. We were treated by him for about four years. That provider was PANDAS aware and helpful in some areas, but we never made a lot of progress. I would suggest things, and he would say that might help. We can try it. I was like, Who is the medical professional here? It was frustrating.

About a year ago, I discovered that a new provider had been added to the Pandas Network in our area. I immediately booked a consult. Let me tell you, she is great! After progress plateauing for years, we are making slow progress again. She is very knowledgable and willing to keep looking for answers to help my son. If you are unhappy with treatment at any time, then keep looking. Progress can be slow and you need to be patient, but if you feel in your gut it is not the right fit, then you are probably right.

Final Thought:

Something else to mention here is that you will likely need a team of providers. My son has a PANDAS provider, a pediatrician, an allergist, an ENT, and a therapist. All are PANDAS aware and accept it. Watch out for providers that completely reject PANDAS as real. They will likely not be helpful for your situation.

2. Do your own research

Doing your own research is so vital. My son’s first PANDAS provider put him on a high-dose antibiotic, probiotic, omega 3s, and vitamin D. After a few months, I was reading about probiotics. I discovered that some strains cause histamine and inflammation issues in some people. The probiotic my son’s provider put him on had several of those strains. My son did much better off of that probiotic and on a different one. I, also, discovered my son goes bonkers on omega 3s. It may be some kind of sensitivity to the fish, but one dose makes him incredibly agitated. I wonder how much suffering was brought on those initial months taking fish oil.

Sometimes, the research gets very confusing. One source will contradict another. Stick to scientific studies and credible sources. Be careful where you get your information. Realize what works for one child may not work for another. It is all very individualized. It is important to go low and slow when any new treatments, and only add one thing at a time.

3. Find support groups

From my experience, many people in your life will not be supportive. Some are well-meaning but don’t know what to do, while others are downright awful. They may guilt you for being a ‘bad parent’. They think it is your fault your child is having these issues. Know that you are not a bad parent. You are doing your best in a very hard situation. No PANDAS parent needs more guilt put on them. They have already thought about how they could have prevented this. Distance yourself from others that bring you down if you need to, and find others who understand.

There are some great parent’s groups online and on social media. A Facebook PANDAS parents support group has helped me so many times. It is a great place to go to be understood. You can vent to others who get it. You can talk about treatment. You can hear success stories and offer support to others. It is an incredible resource. Especially, if you live in an area where there are no physical support groups. Or, if your child can’t leave the house, and you must care for them 24/7. I have been in that situation. I understand.

4. Get sleep

So much easier said than done. I completely understand, but you need that sleep to function at your best. For almost five years, my son slept in my bed. It was the only way for us to get any rest. I tried so many things to get him sleeping independently but nothing worked. He is 11 now, and a few months ago decided to sleep in his bed! I couldn’t believe it! If your child won’t sleep alone right now, then try not to stress it. With a dedicated parent like you, it will happen eventually. Be patient and remember sleep is important for healing. Do what it takes to get it.

If you need more help, then don’t be afraid to try sleep aids. Try some gentler ones first. Things like magnesium, l-theanine, melatonin, and cbd oil are a good place to start. We use melatonin almost every night. I do think it has been essential in healing, because it keeps everyone on a regular sleep schedule. We used to stay up until 2am regularly before using melatonin and that was taxing on everyone. If supplements just don’t cut it, then ask your provider for something to help.

5. Prioritize and don’t stress other things

A lot of things take a back seat with a PANDAS diagnosis or flare-up and that is okay. Less important things have to wait. Don’t feel guilty about this. With PANDAS, my son became very intolerant to stress. He would break out in hives when overly stressed. A huge stress was school. School refusal was and still is a prominent symptom for him. As much as it unnerves me, schooling has taken a back seat to healing. It is hard to make those decisions, especially when it goes against the norm, but you have to do what is best for you child longterm.

When it comes to prioritizing, write down things you have to do, things you feel obligated to do, and things you want to do. If you feel obligated to bring treats to a school function, but you are maxed out with your child’s needs, then you don’t need to do it. There will be a time when things will be easier, and you can bring them then. Even if it is when your children are grown. You can pay it forward then. If your child is stressed about playing soccer, then maybe don’t do that this year. You get the idea. Find an alternative that is manageable. Let go of what you thought you would be doing with your kids, and do what they can and want to do.