0:09
Hello, I'm Doctor Megan Hoffman and I'm Doctor Vicky Queralt.

0:15
We're clinical psychologists specialising in child healthcare and we're also mums.

0:21
From our work in hospitals to our chats on the playground, we've encountered countless examples of strength and courage from families facing health issues around their children.

0:32
Whether it's going for a blood test or managing a chronic health condition, we hear about the challenges and obstacles, and we see the parents and caregivers trying to overcome them.

0:42
In this podcast, we want to shine a light on these families and delve into their healthcare stories to discover what's worked for them and what might be helpful for you too.

0:56
Hi, and welcome to episode 4 of Little Journey Spotlight Sessions.

1:01
Today we're going to be talking to Amelia, an amazing mum of seven-year old twins who live with health conditions known as PANS and PANDAS.

1:10
In both PANS and PANDAS, the immune system mistakenly attacks the brain, leading to a vast array of symptoms that often appear very suddenly and affect a child's physical and mental health.

1:23
PANS and PANDAS are still widely misunderstood, so it can be really hard to reach a diagnosis.

1:29
This can mean that the experience of living with and seeking support for these complex conditions can be extremely challenging for both a child and their families.

1:39
However, thanks to advocates like Amelia, the awareness of these conditions is increasing.

1:46
This is why we're so pleased to be speaking to Amelia today all the way from Poland to learn more about these conditions and how she supported her children through countless medical procedures.

1:58
Hi, Amelia, welcome to our spotlight session.

2:01
Hi, and thank you for inviting me.

2:04
Hi, Amelia, thank you so much for being here.

2:07
Right, We're going to crack straight on because we are so excited to talk to you about your experiences.

2:11
So we know that there's a lot to cover, but can we just start with who's in your family and a little bit about your twins diagnosis, please?

2:21
Yes, sure.

2:22
So I have twins, a boy and a girl.

2:25
They are almost seven in a few weeks and they have been both diagnosed with Tendus pens.

2:34
They have very different symptoms and the different course.

2:38
And probably this would be a very long episode if I only focus on on, on each of them separately.

2:45
So maybe in short, I will say that for our daughter, it started in December 2022 with a very sudden onset of between 10 to 20 different neuropsychiatric symptoms.

3:00
Really like every week there was a new one and every new one was scarier from the previous one.

3:07
And for my son, it started a few months after Luna.

3:12
And the interesting thing was for the first months of Luna's symptoms and all our experiences with doctors and really looking for answers, we didn't have a clue what this is.

3:24
The week that we finally found the answer ourselves, because finally we ended up at the list of symptoms which aligned so perfectly with how she presented it.

3:35
Exactly the same week he started showing symptoms too.

3:39
And in the beginning we a bit laughed about it and, and said, because we didn't know even that this can run in families.

3:44
And we said maybe this is also PANDAS.

3:46
And we thought it's, it's so funny because, you know, we also thought maybe he's copping her a bit to get attention.

3:53
But when his symptoms started showing up and we realised that most of them don't even represent, are not even similar to her symptoms.

4:01
So he can't copy her.

4:02
But they fit perfectly to the list of symptoms too, just a different representation.

4:08
And we were very quickly convinced that this is the same, which was in the beginning very overwhelming to at the same week have the diagnosis and at the same time realise that actually there are two kids involved.

4:23
But now with time, I, I see this more like a blessing because actually it's been much easier to, for them to be both in this together and for us to deal with them together as a team than to have been one completely healthy child and one child sick with a disease which is hard to understand or for siblings.

4:46
So actually, I'm very happy.

4:49
I know that it sounds strange, but I'm very happy that they are both in this together because it really makes it easier and they understand each other very well because of this tool.

5:01
I love that you're seeing the positive in that and that you I can see how that would not necessarily make things easier, but that they have that connection with each other as twins, especially that they understand what each other's going through and what do they understand about their condition.

5:21
We tried to explain them from the beginning also what's really happening in their bodies professionally.

5:29
We explained science in animated videos.

5:32
So we somehow knew what's going to be understandable for them what not because we always try to make it easy to understand for non scientists.

5:42
And we saw very quickly that whenever we explained it to them in a way, you know, building stories, some good and bad guys fighting in the body, they were really curious and really interested to hear more and they were much more willing to incorporate.

6:00
So I would even draw pictures for them and even little animations.

6:06
I have a software on my tablet where I can make really simple animations which show what's happening.

6:11
And they were really so interested in this that it's was very easy for them to understand.

6:17
And they became very cooperative.

6:19
Also thanks to this Bo.

6:21
And I see how important for kids is the story element and the good guys and the bad guys.

6:26
And they are, I think they understand everything you tell them, sometimes even better than adults, because they don't need to know all the technical details.

6:37
They don't need to know deep science.

6:39
They just need to know who's the bad guy and who are the good guys and how can we help these good guys fight the bad guys.

6:46
Yeah, that is I'm so impressed that you have been able to convey PANS PANDAS to them in in that way.

6:54
And I wondered just if you could let us know a little bit about bit more about how PANS PANDAS appears and shows up in your family.

7:04
So you've already mentioned that your boy and your girl have different symptoms and, and actually it kind of shows differently in each of them.

7:15
Can you tell us a little bit more about what you see in day-to-day life with PANS PANDAS, Sure.

7:20
For her it was I would say almost all the symptoms from the list including somatic symptoms, sensory issues like hypersensitivity, extreme problems with sleeping, these rage attacks, very extreme mood swings, very sudden from very high to very low without any reason, emotional liability.

7:46
The only symptom I would say she has never had was ticks and this was actually his main symptom.

7:54
So this is interesting how differently it can show up as As for the OCD part, because OCD is a big component of PANS and PANDAS.

8:05
He has never had intrusive images, thoughts.

8:09
In his case it always showed up in this typical way by compulsive, luckily not very extreme compulsive behaviours, which would last a few weeks after an infection, where he would suddenly start typical stuff, washing his hands, like cleaning himself after the toilet thoroughly, sometimes for half an hour.

8:30
Making sure that once we finished reading a book, he climbed down the bed and made sure that this book is back to the on the table in between flares.

8:40
He doesn't do it.

8:41
He, he doesn't have this need.

8:42
It's just only during his flares that he has this.

8:47
So and also smelling his hands.

8:49
I don't know if it's more a tick or if it's more OCD.

8:51
It's probably hard to distinguish these two.

8:54
So I would say in him this was like one of the key symptoms.

8:59
And also in the stages where he would flare, apart from OCD and ticks, he would have very strong emotional ability too.

9:06
But it never like was it never possessed him?

9:10
It was never something which would take over him.

9:13
He always was somehow in the control and very quickly he could go back to baseline and and it was over.

9:21
So I would say he was a he is a mild case.

9:25
And if we never had a story with Luna, I guess we would never diagnose him because none of the things which was happening to him would make him dysfunctional.

9:38
So I think we would just think that this is how he is.

9:41
Some kids are just like this.

9:42
And we wouldn't have a clue even that this is something you can treat.

9:47
So interesting that despite, you know, the same similar genetics and upbringing and everything that you can have almost completely different set of symptoms of the same disease.

10:00
Yeah, sounds it's such a kind of debilitating and curious and complex disease, isn't it?

10:08
And PANS PANDAS is and goodness, you've really been kind of dealt so, so much to cope with when your insights are incredible.

10:17
Sounds like you've done a lot of research and reading.

10:19
Think about how to understand the condition.

10:22
I, I think of one of the tools for me to process this was understanding it.

10:27
And I've always everything I could understand, I could accept and like tolerate very easily.

10:37
But if I didn't understand this, I would be lost and confused.

10:41
That's why these first months of the disease were so difficult because there were no answers.

10:47
And I wondered if we will ever get answers because if you know, five different doctors and a 10 day hospital stay didn't give us answers, then what will?

10:57
Is there a chance that there is no answer that we will never find out?

11:01
And this was really scary.

11:03
But once we started reading and really getting deep into this and everything started to make so perfectly sense.

11:09
I think since then we never, we never got back to this state, to this, you know, confusion and fear like in the beginning, because everything which can be understandable can be somehow managed to.

11:24
I'm really curious, Emilia, to ask you, was it the, did the doctors introduce the idea of PANS PANDAS first of all to you or was it from your own research?

11:33
No, my own research.

11:35
And I think in Poland at least maybe 1% of cases.

11:39
I know, I know now a few hundred women, you know, for online communities in Poland who have children with this, very rarely it's a Doctor Who's the first one who shines light on this.

11:53
Luckily there is Internet because at one stage when you put all the symptoms in the Google search and you add sudden onset to this, in the end, everyone sooner or later ends up with this disease.

12:07
Of course, sometimes it's not that easy because it's not always sudden onset and it's like I mentioned, not every OCD presents with a compulsive hand washing and, and things like this.

12:18
So it's more tricky.

12:20
But in Poland, unfortunately, most doctors don't know about this disease.

12:24
If they've heard of this, they don't want to tackle this because even legally they, they don't fully know how to do it.

12:34
If you can't put a diagnosis on on paper, you can't assign a code to this disease.

12:40
Every treatment is like problematic because you know they need to follow guidelines.

12:45
And if there are no guidelines, I understand in UK it's quite similar.

12:50
Even doctors who would like to help are a bit afraid.

12:55
And so this is, I would say the biggest challenge for diagnosis.

13:03
I mean, I'm just wondering if you could share kind of your experiences of accessing healthcare with your children and what what that, what's that been like for you and your children?

13:16
He would say the biggest problem we've had was our own struggles with healthcare.

13:25
So I'm very lucky that most of the things our children have to go on through, go through were easier for them than for us.

13:36
I know that it's not always the case, maybe because of their age and their maturity.

13:42
They were very cooperative most of the time.

13:46
However, the blood draws which we had to do for I would say every week or two weeks for a certain period of time, they had to have their blood drawn because there were so many tests to do and to repeat.

14:00
And this was probably the the biggest challenge for us as it turns out that many labs which take blood are not really experienced in taking blood of children.

14:14
And so when the nurse would be very good with kids and she would know how to approach kids, this would go very smoothly often, but very often it was not the case.

14:25
And sometimes it was enough for one bad experience for especially my daughter to be so traumatised that for weeks at the foot of a blood draw or even seeing anything red, she would really get like into complete panic attack.

14:42
And this has been very, very difficult, especially as we knew that if we don't do this test, we won't be able to proceed with the treatment because some treatments depend on the results of the test.

14:55
So it was extremely challenging for a few months and we found out our own way to handle this, which not always worked, but we've like made for them like loyalty cards where for every blood draw they would get a stamp or a sticker.

15:16
And for five blood draws, they would be able to choose some little toy or something.

15:22
And it was one of the ways they were a bit more in control.

15:28
And another thing which I've noticed often during these blood draws, you know, the nurses, even if they had very good intentions and they, they could see that the child is struggling, they had to do this test fast.

15:40
There were other kids waiting or, or adults and they were like under pressure.

15:44
And you could see the more they try to pressure our daughter, the more hysterical she would become.

15:51
And we found out that if I give my daughter time, sometimes it took even 2 hours for her to regulate herself.

16:01
But if she got the time and she would be the one to make a decision.

16:04
OK, now I'm ready.

16:05
Let's go and do this test.

16:07
This would work fine.

16:09
So what we've learned in this process is I never tried to rush it.

16:16
If we go for a blood draw, we pay for the tests.

16:19
And she's sitting on the on the chair and I can see she's completely hysterical.

16:25
I say, OK, let's leave.

16:26
I give you now you know, here is a tablet, play a game.

16:29
Let's wait until you feel better.

16:31
Tell me when you're ready.

16:32
We'll come back.

16:33
And like I said, sometimes it took two hours until she was ready and sometimes she was not able to because it depended a lot on her day.

16:40
And then I would say, OK, let's come home.

16:42
We'll come again again tomorrow.

16:44
Are you OK with this?

16:45
Or you would prefer to try today?

16:48
And, you know, sometimes she would say, OK, I will try again today or no, let's come back tomorrow.

16:53
And sometimes you would come every day.

16:55
So you need a lot of patience and time for this, but the moment she saw that this is under her control and nobody will force her, she was much easier with this.

17:06
And I think even a six year old, maybe even younger child, every child wants to have this sense of control.

17:14
And when they feel they have this control, they are much more easy.

17:19
I think that's really insightful and I love I think you're you're right.

17:23
I think that from finds that giving your child that autonomy and that sense of control is so important.

17:29
And your child doesn't want to have a blood test, so you've put that kind of motivation to think about what reward they want afterwards to help them go through that process and giving them that time.

17:39
That's so important, isn't it?

17:40
You've done so well to support your children through that.

17:44
And I should just, I think I should point out to the listeners that I didn't think we did at the beginning that you're actually based in Poland, aren't you, where you can.

17:52
Yeah.

17:52
And I guess maybe in other countries you mightn't have the facilities to pay for blood draws or to have have kind of that time.

17:59
So I guess is there anything you've done to help prepare giving time and giving your child children choices when they're having their blood draws?

18:05
Is there any other sort of preparation you did to support the middle answer that whatever procedure was about to happen?

18:16
We, we tried to inform our children in advance.

18:20
Sometimes, you know, two weeks in advance, we would say, hey, we will have this test and like really bit by bit, give them more details about the given test, what's going to happen.

18:32
I tried also to do it more like spontaneously without warning and say, hey, now we go for a test.

18:37
But I've but I've realised it's they prefer when it's really like information is dripping and they know they still have a long time and they can get familiar with this.

18:47
And what was very helpful was watching videos on YouTube of these procedures, for example, MRI or IVIG, which our doctor received.

19:00
This were like infusions, intravenous infusions, seeing on YouTube other children her age having these procedures.

19:08
This gave her very big confidence.

19:10
Then if they did it, I can do it too.

19:13
So if this would be an adult, she would be less cooperative.

19:19
But as these were children, she somehow wanted to show that that she can do this too.

19:24
And another amasing trick we've figured out, I also don't know if it would work with every child, but it has worked with Luna.

19:36
So after she's had a really, really strong resistance toward blood draw.

19:41
And finally we managed to take this blood.

19:43
And actually it's this time it didn't hurt at all.

19:45
She was shocked herself that she didn't feel anything.

19:49
And we recorded a video where she's speaking on the camera that she's just had this blood draw.

19:55
And actually it didn't hurt at all.

19:56
And now she's speaking to this future Luna.

19:58
She talks to herself and says, Luna, next time you have a blood draw.

20:04
Me, Luna, I'm telling you that it, it doesn't really hurt.

20:07
Just listen to me.

20:08
And next time she asked us to show her this video before a blood draw and she was talking to herself.

20:15
And this was so convincing to her because she knew nobody tries to trick her.

20:19
It was herself talking.

20:21
And this has worked so amazingly.

20:23
We were shocked that nobody has come up with this idea before, so I don't know if it would work with every child, but I think it's worth trying whenever a child has a good day that they record their own video message to themselves.

20:37
Also, what little journey is doing like using psychology for this very practical part of the of the world.

20:47
I think it's a lot can be done more and better to make it so much easier for children with disease.

20:56
Well, we totally agree.

20:58
We're very passionate about that.

21:01
I I'm hearing that you have experimented a lot with different things to find the right tools to prepare your children for these procedures.

21:13
And I think that's a tricky process to go through because you just want to get it right straight away.

21:17
You just want to make everything better with a magic wand, don't you?

21:19
And it takes quite a lot of patience and but especially you're talking about when you tell your child about the procedure.

21:27
I think that varies so much from child to child.

21:30
And some kids would prefer just on the day and some kids prefer much more in advance.

21:35
So it's interesting to hear about the process that you've gone through.

21:40
I will also just going back a little bit struck by the way that you seem to talk to Luna with her blood tests that you when you notice that she's agitated, you're like, OK, that's fine, we can wait 20 minutes.

21:56
It's, it strikes me about how much your presence and your state of being in that time, how much that must affect Luna when she's having those procedures or having a blood test.

22:09
How you staying calm, Do you feel like that makes a massive difference to how she is able to function?

22:17
Yeah, I I, I guess it's very important.

22:20
Even when I'm stressed, I'm very anxious myself around these procedures, knowing how she can react.

22:26
I think I managed not to show it.

22:31
I think I managed to keep my emotions in check.

22:36
So of course, if I was visibly stressed, she would have much worse reactions.

22:43
Though sometimes I have to admit, there were cases when we had very important blood tests to be done and on a very particular day, because next day we were leaving and we wouldn't be able to do this test quickly.

22:56
And I could see that she's not cooperating.

23:01
I broke down crying a few times out of this helplessness, but then I was also very surprised when she saw me crying.

23:12
This a few times regulated her somehow.

23:15
It was like a shock for her and she would like maybe it was such a distraction for her in her state.

23:23
This would somehow maybe switch the focus from her struggles to my struggles.

23:30
And I was surprised too that sometimes when I was completely like losing my balance, that this new wouldn't necessarily be problematic for her.

23:42
So I don't have the answer about what's the best approach, but for sure a parent should do everything to probably for support from family and friends to make sure that they are not dealing with healthcare with their child when they are under very high stress because this can be chaos.

24:05
I think immediately, I think it sounds like you've kind of normalised like human emotion, haven't you?

24:10
And with your children and kind of modelled how it's, you know, OK to cry.

24:14
It's a particularly distressing situation.

24:16
But that importance of discussing it with them and talking it through with them so you're all open and kind of understanding of each other and how you're feeling, it's really important.

24:25
And I think you touched upon there as well, the kind of the connection you have with your family and friends or community to help you support you through really challenging times.

24:34
Taking your children to healthcare.

24:36
I wonder what else have you kind of is there anything else that you do to kind of nurture your well-being and support you through those challenging times?

24:44
Yeah, I think support especially from the husband and from the closest family is number one thing for me.

24:52
What was very helpful is taking everyday one hour for myself and I spend this one hour for intense sport because really it's usually was like a run very fast run idea idea for the forest.

25:08
It had to be outside home.

25:10
Of course, I had to completely reboot my brain and I've noticed that the bigger the challenge we had at home, the faster I would run because once you cross certain intensity of the workout, you can't think anymore.

25:30
So I would have probably some of my best workouts ever and my best runs in these most difficult times.

25:39
And I would say that this not only this help kept me sane mentally, but I also improved my fitness dramatically in this worst.

25:52
Because every day I had to go for this one hour and have this run.

25:56
This was like, this was my only time for myself in the worst.

26:00
And I didn't need to do anything else.

26:02
No films, no books, I didn't need anything but just this one intense training.

26:08
And then I would come home, realise that wow, I haven't even thought about our situation for one hour.

26:15
How amazing.

26:16
And now I can start from scratch and I, I was really full of energy to tackle this problem from the beginning.

26:25
So this is my #1 tip.

26:28
Really pleased you found something that can kind of give you, will get you out in nature and kind of release some of that stress you're experiencing and kind of just give you some space to then come back and face the challenges that you have.

26:41
Yeah, it sounds like an extreme form of kind of mindfulness meditation, especially keeping your mind on the present moments.

26:48
And, and people can achieve that through kind of focusing on their breathing or focusing on just any particular thing in the present moment that just helps to relieve their brain from constantly scrabbling around in something distressing that's happened or worrying about the future.

27:04
Just kind of focusing on the present.

27:05
And I love that you found that through doing that extreme sport.

27:08
I wondered if I could take you back to kind of your hospital procedures and thinking about the interactions with health professionals that you've had there.

27:18
Have you had particular times where you have had to advocate, I guess for your kids to, to make to kind of request adjustments or to, to ask them to do things in a different way that's going to be supportive of their well-being whilst they're getting the procedure done?

27:39
Yes, I remember a situation in the hospital where a nurse was instructed by the doctor to give my daughter before sleep drug which would calm her down, to make her less agitated before sleep.

27:54
Some antihistamine, which I don't think it worked at all, but they wanted to try this.

28:01
And she was already so agitated that she just absolutely didn't want to take this.

28:06
And she started fighting the nurse and this nurse started physically like holding her and telling her to like just cooperate in a very unfriendly way.

28:17
And like for a second I wondered, well, I should probably let them do their job.

28:24
The doctor instructed this.

28:25
I I can't now oppose but then something a broken me and I thought no no no there is no way that I will let anyone physically force my daughter to anything.

28:36
Not only because it's I don't want to be against my daughter without her even knowing what's going on and why I'm not reacting.

28:43
But I knew also that this can lead to a severe trauma in the future and I want to avoid it and I said no I refuse.

28:51
If she doesn't take it willingly, then let's not take it.

28:55
Other than that and the situation, I was lucky that the healthcare staff in the hospital, they were they knew how to how to talk to kids.

29:07
There was also an MRI machine which I don't know if it's something which is common, but as this was a paediatric hospital and they had MRI machine which was very colourfully painted with animals and above on the ceiling there was like blue sky with clouds.

29:26
So somebody has made this room where MRI was happening really for kids.

29:32
And this was, I thought also such a little tiny investment, but it makes child experience so much better.

29:42
There are so many things you could do which make a huge difference for a child.

29:46
But I understand that this is not like a topic in most of these public places, healthcare places, hospitals.

29:55
Not yet.

29:57
I hope it will change one day.

30:00
I'm just curious to ask how How did the your Luna get on with the MRI?

30:06
Surprisingly well and we will we discussed it with her in advance and we told her this is a situation that's going to be loud.

30:14
We let her listen to the sounds in advance on YouTube.

30:18
You can, you know, give your child headphones.

30:22
And she listened to this and she said it's actually not that bad and she will handle this.

30:27
And I said that she will not be able to move for 20 minutes if she's OK with this.

30:31
And she's she somehow looked at this as a kind of a challenge that if she manages to do this, she will like, reach another level of maturity.

30:45
And though doctors didn't believe she will handle this, she handled it very well.

30:50
She didn't move at all.

30:52
I was praying that she doesn't move because I knew it would impact the results.

30:59
And I think for sure, I don't know about other kids, but I think what helped a lot is this, this, this discussion and showing her how it's going to look like.

31:12
She, it's as if she wanted to prove, yeah, for adults, it's difficult.

31:17
I know that even some adults will manage, but I think I will manage.

31:20
And so very grateful that she did manage this because this was like a very critical part of, of this whole process.

31:27
And we managed to have the MRI done and nothing was found there, which was a huge relief.

31:33
Yeah.

31:34
Got an incredible amount of resilience and courage.

31:37
Luna has.

31:38
I'm also really impressed by her competitive, like, chance of like, like, if adults can't do this, but I can do this.

31:45
She sounds like a brilliant kid.

31:47
No, it it sounds again like that preparation is really key, isn't it?

31:51
Before she had that MRI scan, I wonder, do you know what she thought about for 20 minutes?

31:55
Like, how did she stay still?

31:57
Or was it like pure competitiveness like and determination?

32:01
I think what has helped is that the sound of MRI changed constantly.

32:06
So it wasn't, I thought it will be for 20 minutes the same sound.

32:10
But this was changing and I think she was counting these, you know, hits of this noise and as every few minutes the sound change it.

32:18
It was like a bit novelty for her.

32:21
But to be honest, I don't know how she managed because I know some adults would not manage.

32:26
It's difficult for PANS PANDAS, isn't it?

32:27
Because it's a clinical diagnosis and it's so there's so many complex symptoms involved with the condition and there's no evidence based yet or is it?

32:40
And there's no like clinical test, if you like, or blood test or MRI scan that can kind of prove it.

32:45
It's a clinical diagnosis.

32:46
So it's, it's tricky, but can hear it's such a had such a devastating impact on your children's lives and your, your lives.

32:54
And I know a lot of others, but it's good that the awareness of the conditions increasing.

32:59
I just wondered how are your children at the moment since since receiving the diagnosis?

33:04
Well, now I would say we're almost living a normal life, which was in June last year, almost one year ago.

33:12
I guess we didn't think it's we are ever going to live normally again because we fought when the worst flare hits.

33:22
Especially for my daughter.

33:24
We didn't know if she will ever get out of this.

33:26
We we didn't know how possible it is to get her out because she seemed gone so much like for a few days really it's almost as if her body was left but nothing else from her personality and behaviour.

33:40
So our biggest fear was that she doesn't come back.

33:43
And when she started coming back with treatments, with time, I, I for sure can't say what had the biggest impact on her.

33:50
And now I would say she's most of the time she's 8090% back to baseline, which almost feels like a dream come true.

33:59
So we're very, we appreciate every day as if it was like really the, the best day of our lives.

34:05
And this is definitely the very positive outcome of our experience that I think we have really learned to have joy and the tiniest, tiniest things.

34:16
And I hope it stays with us even when they get even better and that we never, you know, forget about this.

34:23
I just wondered if you got just, like, what would be your top advice for other caregivers and parents needing to access healthcare with their child, not only for PANDAS cases, but in general?

34:38
Yeah, I think this patience is very important.

34:42
I know that there are some situations when you need, when you need to act fast and sometimes an emergency, you need to even use force to have certain procedures done.

34:51
But if it's not extremely urgent, I think, yeah, take time.

34:56
It's not absolutely necessary that it's done today or tomorrow when you can, you know, make sure your child has time to get used to this idea.

35:08
And yeah, talk with your child about what's happening in their body.

35:13
Try to understand it.

35:15
I guess it's about that preparation, isn't it?

35:17
And explaining to your child what's going to happen in the healthcare procedure in a kind of friendly child when way is really important, isn't it?

35:23
And giving them that time and patience for when they're ready to do it.

35:27
So they've got that control and autonomy.

35:29
Really.

35:30
We just have one more question for you, if that's OK.

35:32
It's so you've given some great tips there for parents, but I'm wondering about if you had one wish, how healthcare settings could do things differently to support children through their procedures.

35:43
What would you wish?

35:48
I think, yeah, like this element of colour and pictures, like everything could be illustrated, the walls could be painted.

35:59
These are really small adjustment, but they make a huge difference for a child.

36:04
And I think it's very important also that the healthcare staff talks to the child even when they are very small, not about the child to the parent because it makes a big difference.

36:16
I think children like to feel that they are treated seriously and they are part of the the the interaction that they are.

36:26
Then they don't feel they are forced and that there is something happening beyond their control.

36:31
Absolutely.

36:32
That's such helpful advice.

36:33
Thank you, Amelia, we're so grateful for you coming to talk to us today.

36:38
Thank you so much.

36:39
It's been absolutely fascinating to hear about your experiences with your twins.

36:42
And I'm so inspired by how creative and proactive and intuitive you've been with your kids to create ways of preparing them for procedures that has helped to reduce their anxiety.

36:54
And I'm just so glad that you're in a place now where they 8090% kind of back to baseline and, and doing so well.

37:01
So thank you so much for sharing your stories very much.

37:04
Amelia, thank you for your podcast.

37:06
And I, I hope what you're doing, I'm sure it will help many, many parents.

37:13
It's been such a pleasure speaking with Amelia today.

37:16
For more information about PANS PANDAS, please check the links in this episode's description.

37:22
We also want to thank you, our listeners, for joining us and also a shout out to our fabulous team, Our Little Journey for making this episode possible.

37:32
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37:39
Thank you and goodbye.

37:41
Bye.