Hello and welcome to living in the Lehigh Valley, where our focus is your health and wellness.

I'm Brittany Sweeney.

And I'm Grover Silcox.

On this episode, we'll learn about a group of neuropsychiatric disorders impacting young patients and their behavior.

Plus, meet the woman behind a noble cause in the Lehigh Valley, helping dreams come true.

And a local foundation is doing its part to support student athletes in the area with the help of an NFL linebacker.

But first up, did you know that a strep infection like strep throat can lead to neuropsychiatric conditions in children?

The two related conditions can cause sudden and significant changes in a child's mental and behavioral health.

We sat down with a mother who would stop at nothing to figure out what was ailing her son and their doctor, who finally provided some answers.

Oh, basically, you are an island with 100 players, and the goal is to be the last one standing.

Like many 12 year old boys, Matthew Blaine loves gaming.

So now I'm just going down here and I'm trying to get guns.

In fact, many of the Nazareth preteens interests and behaviors are typical for a kid his age.

I like video games, soccer, hockey.

I like watching TV.

I like going forwards.

I like just going in my room and playing around my Legos.

Very smart, very funny.

Silly.

He just wants people to laugh all the time.

He's very trusting.

He's very honest.

This was when, right before he first got his glasses.

But a few years ago, Matthew's mom, Nicole, noticed her oldest son acting not so typical for his age.

Everything started at like, around five.

We started noticing some things, like the infections and like, little things, like he wasn't listening that well, so it wasn't really a big deal until he reached fourth grade.

That's when I was like getting phone calls from the school all the time for behaviors and, like, the separation anxiety was really bad.

I just get really mad sometimes and it's hard to remember things.

A lot of the times, and I don't like it at all.

Matthew, what do you want for dinner, honey?

Chicken nuggets.

What do you want with it?

French fries.

French fries and chicken nuggets.

Like, I don't know what's in his control and what's out of his control.

Like, when he's not listening and stuff.

Like, sometimes he has no memory of what happened.

I could be crying.

And there were times when he.

Where he was, like, spitting and just acting out of control, but he doesn't remember sometimes after it.

The mom of three knew something was off, so she set out to get some answers.

I got this one for Christmas.

She was diagnosed with ADHD, od, anxiety, social pragmatic communication disorder and a tic disorder.

He was on 4 or 5 different medications for that stuff and nothing helped.

The behaviors persisted, but so did Nicole.

She scoured the internet and found information about two neuropsychiatric disorders referred to as Pans and pandas.

And I read all of the symptoms and I was like, well, this fits.

So I had to go to the pediatrician and tell him that I wanted all the bloodwork.

He argued with me about it, but he did eventually order it.

Matthew's bloodwork came back high for strep.

He would always get like strep skin infections.

He never actually got the strep throat.

He would always get like raw, open infections on his skin.

It's like a rash, but I don't really feel it at all.

The family was finally getting some answers, especially as Nicole found in Long Island.

Diagnosed Matthew with PANDAS, then referred him to a doctor closer to the Lehigh Valley.

PANS now stands for Pediatric Acute Onset Neuropsychiatric Syndrome, and that can be caused by both viruses and bacteria.

Some of the more common ones are mycoplasma, which is the germ that causes walking pneumonia, the flu, Covid, and strep.

When the condition is triggered by strep, it's called PANDAS.

So PANDAS is actually a subset of Pans.

And Pandas stands for Pediatric Autoimmune Nurse psychiatric disorder associated with streptococcal infection.

Doctor Angela Camasto is Matthew's pediatrician from the Woodlands Healing Research Center.

I focus on complex chronic medical problems like autism, PANS and PANDAS, ADHD, Lyme, Bartonella, tick borne illnesses, that sort of thing.

The mission of the Quakertown nonprofit is to treat people with chronic medical illness.

In addition to providing primary care for all ages.

We are similar to conventional medicine and that we do take insurance, but we are different in that we are looking for root causes of illness and using some integrative and holistic methods to try to heal the person's body.

Camasto says PANS and PANDAS are two types of inflammatory brain conditions that occur when an immune response gets misdirected.

So instead of targeting the infection, it causes inflammation in the brain, which causes psychiatric conditions.

A typical PANS and PANDAS case will present with an abrupt onset of OCD or eating restriction, usually at the same time as an illness or shortly after maybe even up to 1 to 2 months after.

Some of the OCD behaviors to be aware of are excessive hand-washing, sometimes an overwhelming sense of guilt and needing to confess even the smallest mistakes, compulsions to go through routines and rituals for simple activities of daily living.

Sometimes the child may need constant reassurance, which would represent with repeated questions over and over again, like is the door locked?

Is the meat cooked?

That sort of thing.

The pediatrician says there are three criteria she uses to diagnose the conditions.

So the first criteria is again the abrupt onset of OCD or eating restriction.

The second criteria, you have to have two other neuropsychiatric symptoms from a list of seven.

Those criteria can be found on websites like the Neuro Immune Foundation and the PANS and PANDAS network.

And then the third requirement is that you're making sure that you rule out any other kind of medical or neurologic condition.

So in a sense, this diagnosis is a diagnosis of exclusion.

You always want to be considering other more, severe or appropriate diagnoses for looking for the situation.

This one I just got last weekend and I got it together in five minutes.

In Matthew's case, he was able to receive a diagnosis in 2023 and has been undergoing treatment ever since.

Once we knew that it was pandas and he started getting treated for that, then they started going away.

I have found that patients respond best when we use a three pronged approach to treating pans and pandas.

The first approach is to take a very thorough history and do very comprehensive lab work to try to find the triggering infection.

And once we find it, we treat it with appropriate antivirals or antibiotics.

The second part is to try to decrease the immune responses inflammatory cascade.

And we can do that with medications like and scents like ibuprofen or steroids.

And I also use being an integrative office.

I use herbs and supplements like fish oil and curcumin.

And then the third part is to treat the psychiatric symptoms.

So we often encourage getting involved with therapy that's targeted specifically for OCD.

And in some cases psychiatric medicines like SSRI are needed.

Saturdays in a minute, 79 degrees.

So what do you want to do?

Soccer.

Make a play for her outside.

He was started off on two antibiotics and he's on like a ton of supplements.

He doesn't have the separation anxiety anymore.

That was a big thing that completely disappeared.

The rage.

Like, he has to get really angry and, like, throw things like, that part has disappeared.

Like that went.

Away.

As symptoms disappear, the Blaine family says they are able to get back to a more normal life.

Field day is coming up and the carnival and field trips.

I think it is very possible to get kids into remission for this.

It is a lot of work and time.

I feel like I've been getting a lot better since I saw my first doctors, and I feel a lot better than I used to.

So interesting.

But yet how confusing for parents whose child may be experiencing this.

And where do the parents turn?

Yeah, it really can be confusing considering the limited resources on the topic.

However, with the right treatment, doctors say the symptoms will eventually go away.

Nicole said she has joined a few support groups since her son was diagnosed.

And most of the parents of older patients say they've grown out of the symptoms of these conditions.

And now on to our next story here on living in the Lehigh Valley, an area nonprofit makes dreams come true for children with serious, chronic or terminal illnesses.

The organization, named Dream Come True, appropriately serves children in the Valley exclusively.

A parent, a family friend, even the child can contact the organization to begin the process of making a dream come to life.

We visited one five year old boy and his family to learn how his special dream came to life.

Thanks to this local organization.

One and two and one.

Three.

Oh man.

Double farm.

E-i-e-i-o.

And on.

For a little guy.

Five year old Kameron McMullen of Nazareth.

Sure knows how to dream big.

I say he's my wild child.

Like, don't let the wheelchair fool you.

He does have his own personality.

He is very funny and bright and just happy go lucky.

He's very vibrant.

People know who he is.

Everywhere we go is a smile on his face and he honestly puts smiles on other people's faces.

Knock, knock.

Who's there?

Ho ho ho!

Ho ho ho ho ho!

It's Santa.

Claus.

Kameron was born with spinal bifida.

His condition left him paralyzed from the waist down.

And yet he never lets his challenges limit his hopes and dreams.

I'm going to be a rock and roll theater in the park.

You're going to perform?

Yes.

One day.

Right?

Yes.

He wanted to go to Disney World with the whole family.

And last year, a local organization helped make his dream come true.

A dream come true.

It's an organization that fulfills the dreams of children who were seriously, chronically or terminally ill. We fulfilled dreams of anything they would dream for.

Number one dream is Disney World.

Of course, Kameron's dream included meeting Disney's foremost ambassador.

Mickey.

A friend referred Kameron and his family to dream come true.

And Rayann Vasko, the group's executive director.

We connected with Rayann and we discussed, Kameron's dream of going to Disney.

You know, at first it was like, this doesn't seem real.

We didn't really think it was going to be possible.

But then everything just kind of started rolling.

You know, they're a great family.

And Kameron is very personable and a lot of fun.

He was diagnosed spinal bifida, and, he got to go to Disney and and had a great time.

Part of the dream package is they get a button that says how many family members and they don't wait in line.

You don't have to schedule times and run from this ride to that ride.

You go right up there.

Every employee supposed to know from Disney, SeaWorld, universal that that child is special.

Take them in.

Dream come true.

Covered the cost of the entire trip.

They planned everything.

The flights where we stayed took care of the passes.

The McMullen stayed at.

Give the kids the World Village, an 89 acre resort for kids with critical illnesses.

Located just outside of Disney World.

The resort was, like, amazing for kids with special needs because everybody there was coming from an organization like Dream Come True.

And on a dream trip.

At Disney World, Kameron and his brothers loved the roller coasters.

And one in particular.

This slinky roller coaster.

As it kept going up.

And down.

We had SeaWorld.

We had three days in Disney, then two days in universal.

So it was jam packed.

Meeting love to slow.

Kameron's robust personality belies the challenges that he's faced in his five short years with multiple surgeries and hospital stays.

So Kameron has had two brain surgeries.

One was to first try to alleviate the pressure in his brain because he has hydrocephalus.

That one failed so that now he has a shunt.

He had to have tethered cord surgery to, release the scar tissue on his spine.

And he's on his second surgery of having a ankle tendon release surgery.

It's a lifetime of different surgeries to adjust.

We want to see these kids grow up, have a great life, but we also want to be able to provide and give them something that they can all remember and think back that during a dark time, they had something fun that that they wanted to do.

When we went on his dream, it was just like, that's all we were focused on is just our family.

We weren't worrying about the day to day things that we deal with.

We were just enjoying the time of the trip.

And now it's like huge because the day to day things that we deal with, with a child with special needs, you know, sometimes can be very stressful and tiring for the whole family to just relax and enjoy a nice trip was awesome.

Dream Come True has fulfilled more than 1300 dreams over 40 years for all kinds of kids and their families in the Lehigh Valley, with everything from Disney trips to celebrity meet ups from cruises to computer systems.

And as for Cameron, well, he's got even more dreams to pursue with a loving family to cheer him on.

Honestly, I think he'll thrive and be successful and overcome the obstacles, because he has in the past.

So going forward, our family will go through some obstacles as well with, Kameron's needs, CHOP visits, surgeries.

But, we'll get through it and we stick together.

And with our love for each other, we can get through anything.

Joining us now in the studio is Rayann Vasko, the executive director of Dream Come True.

Rayann, welcome.

Thank you.

Thank you for having me.

Thanks so much for being here.

Thanks.

I appreciate it.

It was a kid spending time with you and the McMullen family.

And, little Kameron is, you know, the life of the party.

Yes.

He is.

Yeah.

He's a he's a sparkplug.

He really is.

So tell me, who founded it?

Was.

It was a businessman and entrepreneur who founded Dream Come True.

What, 41 years ago now?

Yes.

It was a local businessman called Costas Ellis.

And, he overheard something in on in the hotel he was a vice president of.

About a waitress.

Who was.

It was either her child or her nephew or niece who, had this awful disease.

And at that time, it was a terminal disease, that wanted to go to Disney World.

And being who he is, he's this big man with this big heart.

And he thought this would be a good idea if I sent them to Disney World.

Just come back and tell me.

So he sent him his own money, and, they came back, told him all about it, how wonderful it was.

And he thought this would be a great idea.

So he got his friends together, held a press conference and 41 years later, here we are.

Wow.

Wonderful, wonderful.

And so, what's the age group of children that you serve through?

A dream come true?

We begin at four years old because at four year old, four years old, they can tell us exactly what they want as a dream.

And we go to their 18th birthday.

Wow.

Wow.

And, you know, like many nonprofits, your organization, runs through the efforts of volunteers.

Oh, yes.

You started out as one, and now you're the executive director, a part time job.

So tell us about the volunteers.

That people will help.

Well, we have a lot of, a nice core of volunteers, and they can do anything from just our special events, or they get more involved in fulfilling the dreams.

Or, we call it referral, where you go out and you interview the kids.

For what?

The families for what their dream would be.

One thing with us is we.

You can be as busy as you want.

So we'll have a meeting once a month with the list of kids that were going to fulfill their dreams or interview them for a dream.

And you can say, oh, I'm kind of busy.

I don't I don't think I can take any this month and we're okay with that.

We're very, you know, flexible with your time as a volunteer.

Right.

And there's one volunteer in particular that kind of stands out.

I know Grover mentioned to me and tell us about her.

Oh she's amazing.

She is 99.5 years old.

She's like my best buddy, Dollar Van, and she still helps me.

She will do anything you ask.

And if I don't keep her busy enough, she'll call and say, Raymond, can you.

Do you have something for me to do?

She did a lot of our travel because she's an experienced travel agent, and she is very good at it.

She is just amazing.

I would say from the time she's been a drinker longer than than myself.

And from that time on, she has volunteered for almost every single event we had.

She's a go getter.

She gets results and I just love her dearly.

Well, I think you're all amazing and it's a great organization.

We should say that it is a local.

Yes, Lehigh Valley organization.

So not a national.

You have to, you know, the fundraising and everything.

All here, all here.

We are born and raised here we continue to be here.

We like I said, we stay local.

We're grassroots.

And our biggest mission besides doing the dreams, is to make sure that every dollar you give us is going to go to what we do.

And that's fulfilling dreams, helping these kids who had dreams with us was college scholarships.

And the one we don't like is, unfortunately, if you pass away, we will help the family with funeral expenses.

Such a special program and and special volunteers who get involved with it as well.

Rayann from Dream come True.

Thank you so much for joining us.

No thank you.

Thank you for everything you've done for us.

I really appreciate it.

And finally, today, thousands of student athletes across the Lehigh Valley receive a different kind of workout thanks to an Easton based nonprofit.

The group is called the Athlife Foundation, and the focus is helping students work out their minds and stretch their academic muscles.

The group recently held a special event for students with two time Super Bowl champion Jonathan Casillas as the guest speaker.

Our reporter Megan Frank caught up with Casillas and some student athletes.

It was definitely a lot of challenges as a student athlete, right?

Coming home late from games, having a test in the morning and being able to balance that schedule from games and school.

Right.

It's definitely hard.

Marving Dienhoue is a junior and multi-sport athlete at Pocono Mountain West High School.

He's also part of the Athlife program at his school and works closely with an Athlife academic athletic coach through grant funding, Athlife trains academic athletic coaches and stations them at area schools.

The coach supports students during the school year.

Marvin says he checks in with his academic coach each week.

But over time, she definitely shows me the importance of making certain a positive mindset.

Checking in on you, right?

Because as athletes, we don't have time to dwell down sometimes.

So I feel like when we, take time to really, like, focus on what we're feeling.

I think it's definitely important, right, to just talk to somebody about it also.

Right.

Don't hold that in.

Offering a sounding board and someone who's keeping kids academically on track is the focus of the Athlife Foundation, which works with schools across the U.S..

The group has academic coaches stationed in 11 high schools and ten middle schools across the greater Lehigh Valley and the Poconos.

More than a decade ago, a two time Super Bowl champion, Jonathan Casillas, participated in an athlete program as a multi-sport athlete at New Brunswick High School in New Jersey.

I mean, it was great.

It provided us for the after school program.

So we were in a place where we can do our homework before practice.

S.A.T.

prep was huge.

And the most important thing was community service.

Casillas is an alum of an Athlife generated program called Play It Smart.

He says the program kept him well-rounded, as life aims to get kids to think about life outside of sports.

And that means keeping up their grades and participating in the community.

For me, the most vital thing, especially when you have somebody like myself who wants to give back the community service part of it, literally going into old, old, you know, old folks homes and playing games with them and, cancer wards and turkey drives, food drives like the game is crazy how much stuff that I was able to do when I was in high school.

You're probably not going to.

Pick the retired NFL linebacker says he's even kept in touch with his academic athletic coach.

But she's like my second mom, though, so like she is.

And I tell these kids to have those people there.

She's one of my people that I will call if I ever fall on my back and can't pull myself up.

She's been that person.

We have a definitely, very particular relationship.

Me and her.

Like, my mom called her my second mom.

I got candles at her daughter's bat mitzvah.

I am family.

As life says, it's academic.

Athletic coaches are equal parts counselor, advisor, mentor, and overall champion for their students.

I grew up in a single house, right?

My mom with five kids, and it was really hard for my mom to actually be engaged in my day to day stuff like Mrs. Lazy Vic or these academic coaches can be one thing that I told them that I am giving them advice for is that you need special people in your life that love you, care about you.

That and vice versa, and that you value the things that they say.

You got to make sure you call on them.

People at least have them in the reserve.

Because as athletes, as human beings, we're all going to go through adversity in our life, and most of the time we'll be able to overcome it.

But there's going to be times when you fail and you fall on your back, and you cannot get up without the help of those people.

It's help that's supported by Athlife sponsors like Saint Luke's University Health Network.

Saint Luke's offers sports performance coaches, athletic trainers and physical therapist to the community.

Director of Sports Medicine relationships Tim McGorry says pairing all of that with academic support is crucial for student success.

As a health network, we're heavily involved in local athletics at the scholastic level, so a part of the athletic experience is not just practices and games and trainings, it's the entire experience.

One of the things we have to do is acknowledge how important it is to invest in kids, especially in school age kids, and we do that in a variety of ways.

Investment in education is part of it, but we've also got to make sure that they have the supports to be successful inside and outside.

School life does an incredible job at helping students with mentorship programs and the like, especially student athletes.

And it's an easy one to support and honestly.

Helps us do this thing called Sunday League, which we help, special needs kids learn how to do different sports.

It's definitely a humbling experience knowing that, like, our problems are minuscule compared to theirs.

So I feel like they hope they help me.

Like when we lost a game, we go over there and we help them out.

Make this thing like this is just a loss.

Like they have to do harder things and wake up morning like, you know what I'm saying?

It's hard.

It's hard for me to even work sometimes.

So I want to stay like with the sports community.

So like when I go to college, I'll probably do something like, like, physical therapy or something like that, or like, be a physical therapist or like, just stay in the sports community.

I've dealt with a soldier injury for a while now, and I've stayed positive throughout the whole thing.

Right?

Just being resilient and having a positive outlook on life.

The kids need support.

Kids need people that believe in them and what they're doing and they need support.

So when they're ever questioning themselves, would I ever feel like they've fallen down and they can't get up after I have a staff that's supporting them to making sure they're not holding their hands, but they do have their hand out to make sure they pick them up.

And I think Half Life is checking that box.

Is just a wonderful message that they shared.

And now we have the pleasure of being joined by our own Meg.

Frank.

Meg, thank you so much for being here.

What a wonderful message.

Yeah, it was really about resilience.

Jonathan, Cassie said, you're gonna fall in love.

You've got to get back up.

And he also said, for the kids to find people in their life who can support them, who can show up and be there for them, for those really tough times.

It's something even as an adult, I was like, oh yeah, that's my village.

Those are my people that I need when I'm having a hard time.

So he spoke to the kids and adults.

Makes makes total sense.

How do other schools get this program?

Is it something the school board approves or parents advocate for?

So I would say both.

The first step would be to contact APH life.

They have a website, APH Life Foundation Dawg.

They can actually really help to put the puzzle pieces together and get the ball rolling.

To get a position like this, a school is going to probably need help.

That might mean grant money.

That might mean outside funding.

And in some cases, a school will start by funding the position with a grant.

And then they love it so much.

The school board will vote to keep the program and incorporate a salary for the academic athletic coach.

That's great.

And is Casillas a local guy?

Does he often come to these events?

Do they have a lot of these events?

So he's first of all, he's amazing.

He lives in new Jersey, and he travels all around to speak to kids, to speak to student athletes.

He said that through the AF life program, which he's an alum of, he got the community service bug.

And so way back when he started volunteering when he was with Half-Life, he continues to do that.

He loves doing outreach work, he said he started doing Special Olympics and high school and volunteering, and he still to this day, volunteers with Special Olympics.

Oh, what a great guy.

And if folks need more information about Athlife, is there a website they can go to?

Yes, they should go to athlife Foundation dot Org.

Wonderful Megan Frank, as always, great to see you.

Thank you so much for joining us.

Absolutely.

Well that will do it for this episode of living in the Lehigh Valley for PBS 39.

I'm Grover Silcox and I'm Brittany Sweeney.

Hoping you stay happy and healthy.