Linda Elsegood: Today I'd like to welcome our guest Madi Wend, a mental health practitioner, published author, a multi-state licensed therapist, a national certified counselor, as well as a registered play therapist. Today we're going to talk about mental health components and the need for early diagnosis and treatment due to problematic consequences and manifestations of untreated underlying conditions such as Mast Cell Activation Syndrome (MCAS), Ehlers-Danlos Syndrome (EDS), POTS, mitochondria and metabolic issues. Thank you for joining us today
Madi Wend: Thank you very much I appreciate being here thank you
Linda Elsegood: Could you start by telling us what happens if somebody with one of these conditions or problems comes to you what is the first steps you take
Madi Wend: Well, I receive a lot of young patients that are teens or betwixt age (10 to 12 year olds), and some young adults in her office. A lot of times the neurologist will refer them saying they have migraines or perhaps they have epilepsy but it's not diagnosed. Often, they're having some sort of a seizure-like behavior along with anxiety and a history of smells or texture sensitivities or some other underlying conditions that also have triggered the need to come to an appointment. There is usually a lot of hypersensitivity. They report the hypersensitivity as being the only one who in the car or restaurant that the smell of the food will trigger them or get hives.
Often patients don’t know where the headaches are originating from. Sometimes it is something they ate or drank. Over the years there has been an increase with young people and GI issues. I will do the traditional GAD scale and go through a list of triggers. I see patterns with these you that they are able to socially and emotionally regulate. They're not only dealing with a mental health component based on some sort of either neurological symptoms or somatic symptoms. What they are dealing with is an underlying medical condition that's not been diagnosed. These people have been going to the doctor for up to 15 years trying to get treatment. They have taken all sorts of medications for mental health. When we observe further, we see they are eating a lot of high histamine foods. Or there's triggers and they can work on their triggers with emotions. They know certain things trigger anxiety but when we took away the trigger they're still breaking out in hives. They're still having food aversions. They're still having smell sensitivities. There are still other components.
I started getting an increase with Mast Cell Activation Syndrome patients, or clients, and I also noticed that a lot more young teenagers were talking about chronic pain. I would get a lot of young people with chronic pain. I’d ask if they are you in athletics and they weren’t. If they were in other activities, they might give them up because they bruised easily.
I was sending my clients to another doctor to have him diagnose them. They would have Ehlers-Danlos and POTS, and often Mast Cell Activation Syndrome. I started seeing young people with metabolic conditions. When we think about mental wellness, usually our diet, sleep and exercise is the first start and getting any kind of medical testing. However, things can manifest and people use coping skills to figure out how to cope. Coping skills are not going to cope away a food aversion or a food allergy or a histamine issue.
I have a younger daughter that has these rare diseases and so she started educating herself not only as a practitioner but as a mom. I realized we have on a global scale of people that are struggling with not getting diagnosed. Early diagnosis is crucial.
I have a support group with resources to help people. People were talking about their coping skills and their connections with other people and they shared the same stories. When I have individuals come to the office, they do the traditional social emotional kind of psych eval, but they also get a family history which includes food allergies, rare diseases, mental and medical components. Also, mold exposure, air quality, and other toxins are investigated.
Processed foods are explored. With anxiety, it's a mental health component. Over time a pattern was seen and maybe it is not anxiety after all. Perhaps it is the underlying condition of something medical. There has to be markers to be accepted by the insurance companies. But what if we think about other underlying conditions, possibly mitochondria or Ehlers-Danlos. Sometimes things present differently. My daughter’s Ehlers-Danlos did not present with MRIs as it should, so it took almost a decade to actually get treatment
Some people have allergy testing the presents as normal so they feel defeated. Clinical identification is just as important as having the test results. I listen to patients as a whole human. If they say they don’t believe it is anxiety, I listen, then go through the coping tools. They would go through what is ideal mental health. That's where you identify this situation, you validate how they feel, look where they can’t control the variables, and you ask yourself how this is working. Well, the trend is that it would be for the average person.
Education is important. It is important to share information with your practitioner. In school the doctors didn’t learn about POTS, mitochondria, Mast Cell Activation Syndrome or Ehlers-Danlos.
It is important to stay on top of mental health research, especially with children that have these conditions. You need to focus on what they can do and not worry about what they can’t do.
When it's a parent or a young adult you know that they see their child or they themselves are struggling and they know there's something wrong. Sometimes it is self-defeating when they go to a practitioner and they have no idea what to do or they don't know what's wrong with them. One of the most mentally damaging things is to say I don't know what's wrong with you. I've actually had that happen and the mental health harm is great. Anxiety is in the amygdala. It's in the limbic system and it can grow. When it's at baseline it's the size of a little green pea. We think about multi-faceted symptoms from medical underlying conditions that we don't know what's going on. There's all this havoc going on in the brain creating all of this anxiety so it grows.
A lot of times I focus on the insula, the part where love, peace and calm come from in the limbic system; pets and animals and all those warm fuzzies that make us feel good. We have to think about what can give us calm because when mental health is chaos it needs to be treated from the inside out. The medial underlying component needs to be identified.
A sleep study should always be an option because so much can be learned from a sleep study. A sleep doctor can tell if it is sleep apnea or something else. What might present as insomnia might actually be an underlying condition. My daughter, who has all the rare diseases, brought up that if additional testing could be done soon enough after birth, it could capture MCAS or EDS and treat them before they got out of control; and what if more doctors learned about these crossover illnesses.
Linda Elsegood: Well, I’m going to have to stop you there. This interview was packed with really good information and I’m sure many of our members will relate to your saying “its all in your mind, you need to take some antidepressants or something”. It always amazes me as to how a doctor can tell you that when you’ve got chronic pain and it’s all in your mind you can’t do these things, instead of that the chronic pain is cause by xyz. So, I’m sure people will have picked up some really good help and tips from what you have said, and it’s finding that right person, isn’t it?
If you would like to give your website where people can go and find you, that would be handy
Madi Wend: Well, there’s madiwend.com. For EDS and the rare diseases there’s https://zebratalkehlersdanlos.com/. There are a lot of resources: there’s a blog, my podcast Play Therapy Network on Spotify. There’s https://dfwtherapynow.com/ for Texas, and I also serve Delaware and Florida.
Linda Elsegood: I really appreciate your taking your time!
Madi Wend: I appreciate being on the show today.
Linda Elsegood: So, for people listening, will you do virtual consultations throughout the US/
Madi Wend: I do, and I do public speaking, have my excellent books available on Amazon – I do a lot of children’s books and mental wellness books. As well, I do trainings. My office is open seven days weekly.
Linda Elsegood: Do you operate outside of the US?
Madi Wend: I do coaching outside the US. Health coaching, and helping families navigate.
Linda Elsegood: That’s wonderful; that’s what I was thinking. So, if anybody is anywhere in the world, they can still consult with you
Madi Wend: Yes. I’m in New York, Long Island, so a lot of times those with EDS have issues with cranial cervical instability due to their EDS – contact me because I can help you with the top neurosurgeon in the world.
Linda Elsegood: Thank you very much for your time. Any questions or comments you may have, please email me at Linda@ldnrt.org. I look forward to hearing from you.