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Tina from the United States shares her Autism and Low Dose Naltrexone (LDN) Story
Linda Elsegood: I'd like to introduce Tina Velazquez from the United States, whose children, Jacob and Skylar take LDN. Thank you for meeting here, Tina.
Tina: Thank you for having me.
Linda Elsegood: Could you tell us Jacob and Skyler's experience with LDN, please?
Tina: Yes. Jacob was the first one. He was diagnosed with PDD(NOS), which is high functioning autism, at the age of four. And at that time he was very aggressive. He couldn't tolerate noises such as babies crying, hairdryers, toilets flushing, anything like that. And he had lots of sensory issues. We couldn't take him in public. He would just run away from us. He would open the door to the house and just run for the street. But then, the worst part was right after our daughter was born and she was just an infant, and whenever she would cry, to try to make her stop, he would kick her or throw things at her or scream, and he would sometimes cry himself. And he would slam doors. We had holes in our walls. He was just very unhappy. He wouldn't let me touch him. I couldn't hug him or kiss him. If I told him I loved him, he would say, I don't love you. We started seeing a biomedical doctor who treats children with autism in a more natural way. And after a few months of trying different things, and a lot of things weren’t really helping him, the biggest thing was Jacob's aggressive behaviour. And so, Dr. Dell asked me what was the worst thing? What did I really want? And I said his aggression, especially towards his little sister.
So he said, well, why don't we try something called low dose naltrexone, LDN. And as soon as I heard that, I just thought that sounds like a drug. And remember my eyes started to water, and I thought, how could he even suggest this? He's supposed to be biomedical, more natural. And I didn't want my son on stimulants or any of those things that I had heard about. And so he said, okay, just calm down, let me explain to you what LDN does.
He described that you rub just that a little bit of cream on his wrist at night right before bed, and then it would block his endorphins for the first four hours, and then when his body realized that the endorphins were being blocked, that they would upregulate for the next 18 hours. And that some families were finding that their children with autism who had negative behaviours, that they were doing better on LDN.
And so I thought, okay, it's worth a try. I mean, a cream, how well is this really gonna work? You know, that doctor had really helped us with other things in the past, so we got the prescription, and we rubbed it on his wrist that night. And the next day - typically he would wake up, and we would know he was awake because he would slam the door as hard as he could and get us all awake - I actually went into his room, and he hadn't woken up early like he normally does. I went in to wake him up, and he said, good morning, mommy. And I just couldn't... I thought, okay, this has to be a coincidence, this can't be real, this can't be happening. And from that day, it's so hard to believe though as I'm saying it, that this is the way it happened, but it truly is. I mean, he changed. From that day on, he was calm, and he was happy, and it was just such a natural way. It wasn't as if he was being medicated or anything. He was just the way that I always hoped he would be. And he stopped throwing things or trying to hurt his sister. You know, she would cry, he would just cover his ears or tell or ask me to help Skyler, “What's wrong with her?” But he wasn't aggressive towards her anymore. He wasn't aggressive towards us anymore. Like I had mentioned it to Dr. Dell, when I would start to tell him he would actually even start telling me he loved me. And I remember saying, will you always love me this much? And he would say yes, and I even recorded him. I said I love you. And he said I love you too. And I recorded him because I just was afraid that this wasn't going to last. I didn't see how it could be possible. Eventually, he got a little bit of a rash from the cream, so we switched to the oral liquid, and that seemed to work even better.
He's still on it to this day, since he was four years old. He's seven now. And he's doing great. And his aggressive behaviours haven't come back, and his negative behaviours haven't come back. Still tells me, he loves me. He's very protective of his sister now.
And now our daughter Skylar, she's three now, and I think it was about a year and a half ago we started her on LDN as well, because she had a little bit of a low immune system and it has helped her immune system, but more than that, um, it's helped her. She was just a very fussy child. She would just follow me around the house, and kind of cry and whine, and she wanted to be held all day. And I didn't really know what was wrong with her because she's speech-delayed as well. And it's a total 360 turnaround for her. She's always happy and very rarely does she whine or cry. She's just one of the happiest children you'd ever meet. So it's really just been life-changing for our family.
Linda Elsegood: Definitely! But then you have another remarkable story to add here, about Jacob being a piano prodigy. Would you like to tell us about that?
Tina: We recognized Jacob's gift first when he was just turning four. He used to sit with my husband who plays. My husband was in a nineties band when he was younger. And so we have a grand piano in the house. My husband loves to play. And so one day my husband was playing, and Jacob was sitting, watching. And the next morning I heard the song playing that my husband was playing the night before, but my husband was at work. And it was just Jacob and me in the house, so I was confused, and I thought my husband had come home. And so I went into the room, and it was Jacob, and he was three, just turning four. And I thought, oh my goodness! And I called my husband right away, and I said, I can't believe Jacob's playing the song you played last night. So there it was. We were just so surprised and so shocked. So my husband started working with him a little bit. And then we've started trying to find a piano teacher because my husband doesn't really read music. He just plays more by ear. And so we really wanted to get Jacob reading music.
We had such a hard time because, for a little boy who's not yet four years old, everyone said he's too little. His hands are too small. He won't sit, that he would need to be seven. Most people, most places wanted him to be seven, some said five. It took probably about two months or so before we finally found a teacher that was a little bit of a drive, and we just started taking him there once a week. And he was just going through learning two or three songs a week. And then he was just finishing the books and she started him on more and more difficult pieces, and he just was picking them up. We would go to recitals and people were approaching us saying they can't believe how old our son is; I can't believe he's four years old and playing that.
Linda Elsegood: Could you tell us what songs he's playing? We're not talking twinkle, Twinkle Little Star here, are we?
Tina: That's how it started, but actually he's recording an album right now, and there are ten songs on there. He has Mozart, a sonata by Beethoven, sonatina by Clemente, he's playing a Yanni song, which is a contemporary artist. He has Moonlight Sonata, he has Rondo Alla Turca. And right now he's learning a new artist that he hasn't played, Chopin, the waltzes. They're pretty difficult pieces, so it's pretty fun to watch his little hands going up and down. I'm just wondering how he does.
Linda Elsegood: I mean, there are pieces of music that I would have thought adults would find difficult, you know, and such a small child can do it. Getting back to autism - both of your children - what would you say to mothers that have got an autistic child who are really scared and frightened and not open to LDN.
Tina: I don't know if it will work for everyone, but it's definitely worth a try. It's not expensive. We have ours mailed to us; we don't even have to go to the pharmacy. And it feels, to me, it's the most natural thing. It's such a very low dose and I don't even consider it a drug. It just seems so natural and it just, it kind of works with the body where it depletes the endorphins, but then it causes the body to upregulate. It's not like it's an unnatural thing. And I think it's worth a try. As I said, I can't guarantee that it would work for everybody, but it definitely did for both of my kids. I saw the stories, I told you about them. That to me is life-changing, is the only way I can describe how LDN has been for us.
And we tell everyone we meet about it. We've talked to parents who were considering Ritalin or other things that their doctors had, or Zoloft, or different pharmaceutical drugs that their doctors had recommended for their children if their behaviours were aggressive or they were hyperactive, or things like that. We say, well, why don’t you just give it a try? Those drugs are dangerous, but LDN I think it can only help. And it's worth a try, it's definitely worth a try. It definitely worked for my children.
Linda Elsegood: And thank you very much for sharing your experience with us.
Tina: Oh, absolutely. We are more than happy. My husband and I tell everyone we meet because we want to spread the word. People don't know about this. People only know what their neurologist or their psychiatrist is telling them. And unfortunately, LDN isn't what they're telling them. We're just so fortunate that we found a doctor that had really done his research, and talked to me into trying this. I will be forever indebted to Dr. Dell for what he's done for my children.
Linda Elsegood: Thank you.
Any questions or comments you may have, please contact us. I look forward to hearing from you. Thank you for joining us today. We really appreciated your company. Until next time, stay safe and keep well.