Episode 12: Parenting Children with MCS

Episode 12: Parenting Children with MCS 

Guest  00:05

If we can't take her outside, if she can't be around people that have fragrances on, how is she going to go to school? How is she going to have friends? How is she going to do the things that she wants in life and it just kind of shocked me.

Aaron Goodman  00:19

Welcome to the Chemical Sensitivity Podcast. It's a podcast that amplifies the voices of people with Multiple Chemical Sensitivity or MCS, also known as Environmental Illness, Chemical Intolerance, and Toxicant-Induced Loss of Tolerance or TILT. The podcast also highlights emerging research about the illness. 

This episode features in insightful conversation with a woman who has MCS and is the mother of two teenage daughters who also have MCS. My guest has chosen to keep their names confidential to protect their privacy. They live in Colorado in the United States. My guest’s youngest daughter is 14. My guest describes her as neurotypical and says she experiences migraines and mild anaphylaxis when she experiences reactions to chemically scented products. 

My guest mostly speaks in our conversation about her oldest daughter, who is 15 and has been diagnosed with MCS and Mast Cell activation Syndrome or MCAS. She was born with Ohtahara Syndrome. It's a rare type of epilepsy that affects infants in the first three months of life. Her illness progressed into what's known as Lennox Gestalt Syndrome, another form of epilepsy, and she has seizures to this day. 

My guest’s daughter is nonverbal, answers yes or no questions with an iPad, and is in a wheelchair. My guest is her primary caregiver. As you'll hear this requires a lot of energy, commitment, and care. It's through her close connection with her daughter that she's able to understand how MCS and MCAS affect her and how to provide the best possible support. 

 If you're listening and have children with MCs or MCAS, you may find my guest offers helpful insights about the importance of listening to your intuition about their chemical sensitivities or intolerances, that you can back up your intuition with research, and above all, to trust yourself in advocating for your children. 

I hope you enjoy the conversation and find it of benefit. We release new episodes twice a month. The best way to never miss one is to subscribe for free wherever you get your podcasts. Leave a review on Apple podcasts. It's a great way to help others learn about the podcast, and thanks so much for listening.

Guest  02:56

My name, I'm going to let remain anonymous, but I'm 39 years old. I'm a female and haven't experienced MCS for too long. Maybe the past four years. My daughter is the one has who has very severe MCS. She’s been experiencing it since 2017. It was her big turn. She does have a rare seizure disorder since birth but that actually wasn't really an issue. We failed several meds, several brain surgeries. But it wasn't until 2017 when we noticed her MCS flares of being basically allergic to everything and her seizures got worse.

Aaron Goodman  03:31

And just for listeners, your daughter is how old now and could you please tell us again when you get the other medical condition that your daughter has?

Guest  03:40

Yes, she is 15. She had Ohtahara Syndrome when she was born, and when she was three it progressed in a Lennox Gestalt syndrome, which is another seizure disorder. She's been technically diagnosed with MCS, but she also has MCAS, which is Mast Cell Activation Syndrome. But no doctor that I have found so far is willing to diagnose that.

Aaron Goodman  04:03

And the other conditions that you mentioned. I'm not an expert in those, but essentially that affects your daughter's mobility and how else is she affected?

Guest  04:13

Yes, she is nonverbal. She is in a wheelchair. Everything is full assist, so I have to carry her, I have to help her. She answers yes or no questions on an iPad I have to give her support. Everything is done by me basically.

Aaron Goodman  04:25

When did you first notice something was up with and start to think could this be MCS?

Guest  04:32

It was actually right before her wish trip and 2017 When we went, every single person that walked by with perfume, she'd seemed to get this dazed look. Her face would get red and she'd seize more. And then when we slept, we noticed that anytime she would lay down, even though they said it was unscented, because I knew that her skin was very sensitive, so we always use unscented products. Anyway because of the skin rashes, I didn't think anything of that because there wasn't really a product that just bothered her skin and then we noticed after she would sleep, she couldn't get up in the morning and she would seize throughout the day and until we got her fresh air she wouldn't stop seizing.

Aaron Goodman  05:09

You mentioned the wish trip. So just for listeners’ clarity, the conditions that your daughter has, are those terminal conditions?

Guest  05:17

Yes, she qualified on Ohtahara Syndrome, which progressed into Lennox Gestalt Syndrome, which is a severe regressive seizure disorder. Her life expectancy was two years old and she's now 15.

Aaron Goodman  05:26

I’m really sorry to hear about this. Not only do you have these very difficult conditions, but then you put MCS into the mix. And I just wonder when that first started to happen on that, were some of the thoughts and feelings you had at the time? 

Guest  05:40

As a parent, I was thinking, ‘Oh crap, here we go again.’ It’s one thing to deal with your child going through brain surgery, so I've always been a very strong woman and very logical, and, ‘Okay, all right, she's got this now, what do we do to fix it? How can we give her the best life possible. I know her life's going to be short, but I want the best quality of life,’ has always been my thought and my goal. And I thought oh, ‘My god, there goes her quality of life. If we can't take her outside. If she can't be around people that have fragrances on, how is she going to go to school? How is she going to have friends? How is she going to do the things that she wants in life?’ And it just kind of shocked me. 

So I started throwing away everything in my house that smelled and made sure that every single thing that we did we only cleaned with peroxide and apple cider vinegar after that. I had a little bit of knowledge because my dad has migraines from chemical fragrances, so I knew that, but I did not know that fragrances would lead to her seizing. It never crossed my mind. I thought, ‘Sure, you know, the inflammation, the redness, the allergies, anaphylaxis, no problem. I’ve got my epipens. I've got my quercetin. I've got my nettle. I mean, I grew up handling herbal remedies and functional medicine. This was my bag. I know this inside and out.’ But I thought, ‘This is going to break us,’ because this is something that I never assumed. That you could go from these little symptoms that would lead to a seizure. And that's what frightened me.

Aaron Goodman  07:01

Do you see connection between the other very serious illnesses that your daughter has an MCS?

Guest  07:09

Her seizures were from brain damage. Her brain didn't develop in the womb. So I know that she's always going to have seizures, so you have to take that part out of it. But what I didn't know until probably a couple of years ago, I mean, I always knew that it had something to do with her seizures and that it something to do the MCS and MCAS. So I always focused on the gut and healing those organs. But what I didn't know is how big of a connection with mould toxicity and Candida that is really controlling not only MCS and MCAS, but her seizures. So it's in the last couple of years that we've really looked into if we control and get rid of the Candida, to get out of mould. She doesn't seize. She doesn't have the red face. She doesn't look like she's going to have a chemical burn on her face. And now it's okay, but the problem is with, and forgive me, but you know, greedy landlords and the market. Right now, all these houses have some sort of mould, and how are you supposed to get out into fresh air when everyone is using chemicals around you? It's really hard to heal the gut when you've got all these external factors contributing to them.

Aaron Goodman  08:16

When the condition first started to appear the chemical sensitivity did you seek out any medical care? And if so, what was your experience with that?

Guest  08:25

We were in Texas at the time and my doctor was fabulous, but his knowledge was limited. And he never mentioned anything like Candida or mould toxicity, because I don't think he knew about it. So his only form of treatment was, “Let's drug her. So let's try all these different antihistamines,” and nothing worked. And they all made her seizures worse, and then she would get chronic sinus infections. It was constant, so it was antibiotic after antibiotic after antibiotic, and little did I know that I was poisoning her instead of helping her. So I think the chronic in infections with the antibiotics made things so much worse and tracing back all of my steps, what I didn't realise is, in the apartment we had, not only did we have fragrances coming down from everywhere else in the building, but we had water damage. And even though they “fixed” the damage, the damage was already done. That mould was already building. You couldn't see it, but I noticed a huge decline. And I went back because I've documented everything. I'm like, ‘Oh my gosh, this is where it started. It started here with this water damage. It started with mould.’ And then I think because she was on seizure medication for so long. She already had a severely damaged gut. So that Candida was already kind of there. And then you add in the antibiotics and then you have the perfect storm and I think I've been battling it ever since.

Aaron Goodman  09:47

As a mother, what’s it  been like trying to figure this out? It involves so much research and effort. What's that been been like for you?

Guest  09:55

The research is fine. I love learning and I love the human body. I have a background I'm in functional medicine. I was a neuromuscular massage therapist. I started this journey last 14 Working with my dad in a vitamin store like I love this. So that aspect was honestly kind of fun. I've always taken it as this isn't a burden. This isn't a hard thing to do. This is just another human puzzle that I have to heal. It's not a big deal. The issue was in Texas, I tried and they told me “we're done. There's nothing you can do.” Neuro, GI, paediatrician said, “There's nothing you can do.” And then we decided to move to Colorado for medical marijuana. And they have a program where you can get paid to take care of your own kid so that, ‘Oh my god, I can live, I can make my own money. I don't have to work. I can do this and take care of her. Maybe we can find a doctor.’ 

Well, my problem was is I asked for help. And instead of finding help in Colorado, we found CPS. They told me it was not possible for chemical fragrances to trigger a seizure. And I thought, ‘But you know it can trigger migraine seizures, and seizures are not that different from a migraine. I know the human body. What are you talking about? Make this make sense.’ And instead of them helping me and helping doctors, any person that found out about us would call CPS. So my daughter got taken from me because of MCS and MCAS. And I was like, ‘But this is real. I have 3,600 pages of proof. I don't understand. Can you look at it?’ I remember a judge. I mean, I was handing her the stuff. She's like, “That's not admissible.” I was like, “I don't understand. There's some there's not something wrong with me. All you have to do is look at these thousands of pages.”

Aaron Goodman  11:29

Were these medical or scholarly reports confirming the physiological nature of MCS. And they denied that? 

Guest  11:37

Yeah, they did. Even my lawyer had a woman, I don't remember her name, but she's in New Mexico, and she's a person with MCS, and she's a doctor, and he had stacks of paper from her that she gave us and they wouldn't look at that. The only thing the judge said was, “You disobeyed a doctor. How dare you?”

Aaron Goodman  11:51

You're reunited again, that's so great. How long was did you have to be apart?

Guest  11:55

It was nine months? It broke us both? For sure. Yeah,

Aaron Goodman  11:59

I'm so sorry to hear that. What would you say to other folks with kids about? You know, what to look for? Because it's a tough one, right, to sometimes figure out this is really happening.

Guest  12:12

People think that allergies are just allergies. And I would caution against that. You have to think what is going on with the body that you have an allergic reaction to something Yes, we know that all chemical fragrances are bad laundry detergent, candles, plugins, all that stuff, we get that. But with a healthy immune system, you're not going to react. So you have to think of okay, ‘If I have an allergy to something, whether it's outdoors, and I'm not talking about that food allergy, because I understand that happens too. But that also can be a factor.’ 

So if your kid has multiple food allergies, it started with being allergic to peanuts, and she's never been allergic to peanuts before in her life, her throat swelled up. So if you're having to go to a doctor because of a rash, throat swelling, one of the biggest things I look for is her ear or her face having this bright red reaction to something that's a histamine reaction. I'm very lucky I have such a good connection with my daughter. Because I mean, I can tell by the way she looks like you have a headache. You have a migraine, because I mean, there are a lot of times where she's not doing okay, and she can't type yes or no answers to me. She can't use her little finger and she can't explain. So I'm looking at for eye dilation. I'm looking for swelling, I'm looking for the way she manoeuvres her body. If she's tired on one side, I'm looking if she's stemming hitting her head, I'm looking if she slumping on one side of her body, I'm looking at organ swelling. So I'm going and palpating and touching kidneys and I'm touching. I'm like, Okay, your livers clogged here. Okay, the bile ducts clogged here. And I'm literally physically giving her an exam.

Aaron Goodman  13:43

Your daughter is with you in the space you are in right now, in your home. And I get the sense that you're very present with your child. And so for busy lives, how can we tune into our kids and catch this?

Guest  13:56

Yeah, I did work a good 12-hour day before, you know when I was a massage therapist, and I I had the same intuition. My daughter, I think it's quality time. I mean, we don't just sit in front of the TV. I hold her I talk to her and my other daughter. She has mild MCS, very mild. She just gets migraines like my father does. But any day she came home from school, I would look her over, “Hey, how was your day? Tell me the best part of your day. Now tell me the worst part of your day.” And you learn to catch on to how they say things. And you know, I could look at my other daughter. She's a perfect example because it's just headaches and she has got such a high pain tolerance like I do. A normal human would not catch this at all. And she would come home and it would just be this little slight wink of her eye and I'm like, ‘That's it.’ “Hey, what happened today at school? I noticed you're closing your eye. Are you sensitive to light?” Just like, “Yeah, it just seems like it's burning my head today.” That was my first clue with her and it was just this this little wink and that's all it was. And it was just because I sat down with her talking over her afternoon snack that's all it needed to happen, this five-minute conversation led to, “Well, a little girl came in, she smelled like [beeped out company name] that gave me a really bad headache.” And because she didn't have the other issues, were able to feed her well hydrate her, you know, give her care and she really doesn't have an issue. 

I think it really just is, sit down, talk to your kids, pay attention to how their body is every day. Because you can tell by the dark circles under their eyes if they got a good night's sleep. You can tell by if they're the way they're holding their body, if they don't want to tell you something, or they're nervous, or they had a bad day. I mean, it's really just reading someone's body language. And I know it sounds trite, maybe but hug your kids, you can feel so much just by holding them their heartbeats going to match yours. You’re going to know if they're stiff, if they're tired, if they're sore, just by holding them in that 30-second or minute hug is going to tell you more than any conversation ever. 

Aaron Goodman  15:57

Well, yeah, beautiful. Maybe as we move towards wrapping up our chat, what are some of the qualities or the strengths that you've had to build? And how have you done that?

Guest  16:07

It may sound silly, because I don't know what I believe in if there's a higher power, but I do believe that a lot of things happen for a reason. And I think the life that I've lived has been very difficult, but it's prepared me for this. But I think that just I've never ignored my intuition ever. And I think as a parent, you have to have that. You have to say no. That word “no” is magical. Whether it be a doctor, a judge, a lawyer, because I literally stood in front of a judge said, “No, you're wrong. And if you would let me speak, I'll let you know why. I have been with my kid for this many years. And I can feel this.” 

And every parent has this connection with their kid and you cannot doubt that doctors are going to dig at you. And they're going to make you think that you're stupid. But you're not. Parents’ intuition is rarely wrong. But I think you have to hold on to that. Yes, you need to back it up by knowledge. Absolutely. But there's always if you have this nagging, little feeling, you know, you're right. Find a way to back up what you feel with studies. I have it out with doctors time and time again. And because I didn't know in my tuition, I've saved her life based on that alone. And it seemed crazy at the time. And now going back. It's like, ‘Oh, yeah, there's a nice little pattern.’ Glad I listened to myself, but you know what your baby's going through. You know, the reason why sometimes you just have to wait to find the pathway to help them. But parents know. And I'm sorry, they know more than doctors. You can't ignore that biological bond that you have with your babies. And sometimes it's even not biological. I mean, you've been with us know that you feel.

Aaron Goodman  17:42

That brings us to the end of this episode of the Chemical Sensitivity Podcast. Thank you very much to my guest for speaking with me on the podcast. 

The podcast is produced by me, Aaron Goodman and Kiana Holland. We release new episodes twice a month. Please subscribe for free wherever you get your podcasts to never miss an episode. leave a review on Apple podcasts. It's a great way to help others find the podcast follow us on Facebook, Twitter, Instagram, Tik Tok, and YouTube just search for the Chemical Sensitivity Podcast or podcasting MCS. 

If there's someone you'd like to hear interviewed on the podcast or a topic you'd like us to explore, just let me know. Email me at info at chemical sensitivity podcast.org and thanks so much for listening.