Mother Describes Daughter’s Severe Regression and Later Improvements

Summary:

Sue describes her daughter Natalie’s lifelong health struggles, including mitochondrial disease, repeated infections, hospitalizations, cognitive regression, autism diagnosis, aggressive behavior, immune problems, and seizures.

After years of medical treatments, DAN doctors, special diets, immune globulin therapy, and rotating medications, Sue says she discovered antiparasitic treatment and later the MMS protocol connected with Kerri Rivera. She reports rapid signs of calmness and awareness after the first very small dose, followed by gradual improvements, reduced medications, lower ATEC score, and longer seizure-free periods.

Transcript:

My name is Sue and my daughter has been very ill all her life, from birth actually.

She started, gosh, she started getting really ill at about two weeks of age. Pneumonia, different things happening to her, many hospitalizations, ear infections, many hospitalizations.

At any rate, we were told to get a muscle biopsy and we learned through that muscle biopsy that she has mitochondrial disease.

So we of course sought out the best doctors that we could seek at that time, that we could find at that time, excuse me. And we employed many, many different medical treatments on my daughter to try to help her feel better.

And part of those treatments were a lot of antibiotics, a lot of antibiotics over the years. And also the mitochondrial specialists at the time were telling us that you really should make sure that every single year you give that girl a flu vaccine and your entire family. Because, you know, she has mitochondrial disease and so she’s going to be more susceptible. She’s, you know, going to want to protect her.

So we did this. And every single flu vaccine that she was given, she ended up in the pediatrician’s office the day two later. And she somehow bounced back, you know, a little bit. But she was always weak, always fragile, always sick.

Ear tubes, always occupational therapy, speech therapy, you know, everything. She started to kind of get a little bit better with a lot of in-home nursing care and my quitting my job and a lot of care.

Somewhere around 2003, and we were getting more help for her. We were really excited. 2003, 2004, like, hey, she’s getting prepared to go into kindergarten, a special needs type of kindergarten, one for mildly cognitively impaired children, but nonetheless, a kindergarten in a general ed setting. And she was happy.

And we gave her another flu shot in 2005.

[Crying]

She regressed so rapidly. She went from being, you know, mildly cognitively impaired, I’m sorry, to severely, multiply impaired classification in the school.

Sorry, I wasn’t prepared for this. Severely multiply impaired. She could no longer be in that mild kindergarten anymore. Mildly impaired kindergarten anymore. She could no longer be integrated with normal children. Not even the least bit.

She had to be moved to an autism classroom. And it was, you know, a classroom of five children and three adults. And she was the worst one in that group of five children. She could not function at all. Barely at all.

So everything fell apart. And this happened, it was September of 2005, she got that flu shot. And she was rapidly degressed. By October, November, December, she had fallen apart within a couple months.

And the school systems take a while to make the adjustments. But by that April of 06, they did make the adjustments to that very heavy, intense need for her supports. And in 06 of April, we got an autism diagnosis.

So we had the medical side and we had the school side of her deterioration.

So of course I sought out the DAN doctors and we went that route for years, very diligently for years. And actually I started the gluten-free diet in 05 because I was already sensing and researching, you know.

And so gluten-free, casein-free diet in late 05 and then 06 became all the DAN supplements folded in and all that, you know. And, you know, there was some improvement initially, but then it just seemed like over the years things weren’t improving. They were getting worse and worse and worse.

07, 08, more aggression, more irritability, not only towards the caregiver myself, attacking kids at school, attacking them, attacking para-educators. My little, at that time, probably roughly 45-pound little infant girl, excuse me, infant girl, was attacking like an animal and could barely stay in school.

We had to switch school systems to try to find even more support for her. So I was really frustrated.

Things degraded even more to the point where she needed immune globulin therapy every four weeks. She’d get an injection of immune globulin into her vein to try to give her some immune support to try to combat these illnesses that kept on reoccurring in her.

And then the DAN doctor at the time, very generous and kind man, he was trying so hard for her, he said, well, let’s try every three weeks now. That still didn’t do it.

So we made another change. We said goodbye to that doctor, thank you for all your efforts. We made another change to the local hospital because we felt that we needed the local hospital support in case things continue to get worse for her.

[Crying] Excuse me.

We got her with an immune specialist and he put her on weekly immune globulin, which is subcutaneous. It’s less invasive. You don’t have to find a vein. You just go under the skin. So then weekly therapies.

Still didn’t do it. She was still attacking. She was still uncomfortable, still not sleeping well. She was not having a quality of life at all that she deserved.

And I was on Facebook, not on Facebook, on email, a Yahoo group, a support group of moms that I try to research like all autism moms do. And this one gal was talking about the moon.

She seems like she’s lost it. I mean, I thought I had already lost it. And she’s talking about the moon. Okay, whatever. And I’d see her emails periodically.

And one time, there was this one evening that Natalie had such a bad evening of weird crying, weird crying in a way that we had never heard before. Almost like a possessed kind of cry before bed.

And I looked at her dad, my husband, I said, this is weird. Something’s weird. And that email I had just read, again, the earlier in the day, I ran down to my computer at that very moment. And I went to Farmer’s Almanac.

And it’s full moon. It’s full moon. And that’s that crazy, crazy laughter. And it’s full moon. I knew that that crazy lady, that crazy mom wasn’t so crazy.

So then I knew what I was dealing with, at least to some degree. And I contacted her doctor. And I was emphatic.

Her pediatrician, I said, we need to, we need to give her an antiparasitic. This is what I think is going on based on all the research I had done. Give her an antiparasitic medication.

Things started to improve. Reports home from school. Natalie did this or Natalie did that where she hadn’t been doing things before. She hadn’t had behavior of hitting or pulling someone’s hair or biting or pinching or kicking. Oh, I could name the behaviors.

So we were onto something. I was really pleased. And we kept on with these antiparasitic meds. We’d rotate very various ones.

I was lucky enough to have found a doctor who was willing to see my passion and trust me. And I told that doctor, I will bring her in for as much blood work as you want me to bring her in. You have to do this for me.

And so there was a relationship where he allowed me to rotate various antiparasitic and sure enough, she improved.

But there was still some strain there. And I couldn’t figure it out what it was. Why? Why it was still going on?

Well, of course, she was still on antifungals daily, antibiotics daily, antivirals daily, and now an antiparasitic daily, rotating whatnot. So she had very complicated medical life.

And I ran into a friend of mine at Costco, an acquaintance who also had a special needs child with autism. And we were just chit-chatting back and forth over the Costco shelves.

And I told her, I said, no, we’ve been doing some antiparasitic on Natalie and they seem like they’re helping. I said, but I was expressing to her, you know, that some kind of strain is still there. I can’t.

And this friend of mine explained, she said, you know, maybe they’re having a hard time coming out. I didn’t really know what that meant. Because I hadn’t had that much time to research coming out.

She goes, you know, coming out, coming out of, you know, in the poop.

So I said, well, she goes, you know, there’s this, this, this woman who I’ve connected with Sue on the computer and she’s from Mexico.

I’m like, I said, I think, I think I know who you’re talking about. I said that to my friend, because I had just again been on Google and I was looking for mineral water, because I felt like, well, maybe this missing piece is maybe Nellie’s not getting enough minerals supplementation.

You know, you’re on the gluten-free diet. You don’t know. You want to make sure that she’s safe.

And I had Google mineral water and up pop Andreas Kalcker video. And I watched these videos. One, this was, this would have been November of 2011.

And I watched these videos around Thanksgiving and I saw this Andreas Kalcker talking and talking. And everything he was saying was making sense to me somehow, even though I didn’t understand the science. It was making logical sense to me, but I didn’t know, can I put, employ that, that technique, that product on someone so sick as this little girl, so sick? I didn’t know.

And I had actually again Googled again on a different evening, sometime around November or early December timeframe of 2011. Mineral water, because I thought, I want to look into that a little bit And Kerri Rivera popped up.

And she was, she had a tropical background. It was a nice, she was pouring and mixing and showing, displaying how to mix this product that Andreas was talking about. I didn’t know that they knew each other necessarily at this point, because I was still learning.

But when my friend at Costco said to me, hey, I know this woman. I said, is she, she has this beautiful face and she’s smiling like this in her video. She goes, yeah.

I said, and she said, Kerri Rivera. I said, yes, that’s who I was talking to, or who I saw in the video.

Anyways, within a week, that friend at Costco got me connected with another friend who had some spare MMS. And I went over to her house and she showed me how to mix the first drops.

And it was July 9th of 2012. And I’ll never forget it, because I’m sorry.

One eighth of a drop. One eighth. She took that afternoon at my friend’s house and we came home.

And I was in the kitchen getting ready to prepare dinner. And Nellie was watching me. She was watching me. Sitting there calmly, calmly sitting and observing me.

And I had never, never witnessed that ever in my life from her. And I knew, I knew from that moment, that moment I saw her, I said this, there’s something to this.

And we found a way to help my daughter finally feel better. I knew.

Anyways, the shock of it all, but delight too at the same time. She went and I had her go jump on the neighbor’s trampoline like she always liked to do. And she jumped.

But it was different. I was watching her from the kitchen, you know, and make sure she was safe and netted trampoline, of course. She stopped jumping.

She was looking around and she looked in the neighbor’s house. She looked up at the birds. She looked down at the grass. And it was different. It was different. Ken, this is just one-eighth of a drop.

Normally, on the trampoline, she would just be constantly bouncing, constantly flapping, looking, you know, never ever ability to focus, not one iota. You know, she could never attend to occupational speech therapy very well, hardly at all, because of that too, you know, in her past.

But yeah, so she came in from the trampoline. I said, Natalie, what are you doing out there?

Because I did see her doing a little bit of what is referred to as tick spitting. She has a little, you know, so I did see that she would kind of spit towards the sunlight, but it wasn’t consuming her, which was amazing.

She came, I said, I said, what are you doing out there? She goes, it’s sensory. She said to me about the spitting. It’s sensory.

Sensory. So what this tells me is she, all those years, and I’m talking with occupational therapists or teachers and trying to explain to people that all that spitting thing is a sensory input thing. She needs that, you know, visual stimming and oral stimming. And it’s a sensory thing.

She’s, you know, she was hearing me all those years. And she told me, it’s sensory, mom. Never had she ever said before. Anyways, more confirmation.

So from there, the story continues, of course, that I employed the MMS protocol of Kerri Rivera’s. I took out all the antioxidants from the DAN protocol. It was basically you’re doing a 180 away from DAN to the Kerri protocol and took some time.

This takes time, especially with a fragile one, as fragile as my Natalie. And we started seeing more, more good reports coming from home.

It’s a little rocky because with someone so sick, you have to move very, very slowly up on the drops. I could only go up, you know, I couldn’t go up as fast as some children could go up.

But I was able to go up and, you know, pretty fast and correlate it with the parasitic protocol and adding those also in slowly.

She started July 9th was the first drop and her ATEC was a 79, I believe it was. And she’s still a work in progress. And it is currently, what is it, May 25th of 2013.

But she hasn’t had a full year because it was such a slow ramping up. She has not had that many parasite full protocol rounds yet. But she’s already at about a 40, I think the last measurement was a 46, I believe, ATEC, somewhere around there.

She is off of antifungal med. Again, she used to take it daily. She is off of antibiotics. Again, she used to take them daily and rotate them because they weren’t working.

She is off of antiviral. She is off of low-dose naltrexin, which is an immune modulator type technique …that is employed by the DAN [protocol]. She’s off of that.

She is… her seizures used to happen grand mal tonic-clonic, which is a very dangerous kind of seizure. They used to happen every two and a half to three weeks. Terribly dangerous.

She has had seizure-free days now. Her largest streak of seizure-free days was 105 days. Then she had a seizure, but we know what it was related to. It was related to a stop in an antiparasitic med that was too fast.

But now she is, again, ramping back up. She’s at seizure-free day 69 right now. And she’s going to continue to go. I feel pretty good about that.

We are lowering her seizure med. We have to go very slow. But the dream is that she will be off that seizure med next too. And then the dream after that is that someday maybe she will be off that immunoglobulin therapy, which would be awesome for her.

So she’s a very complicated case. And being 14 years old and highly compromised in many ways, highly infested. Well, whatever.

She takes a lot of time, but she’s getting there. And so we’re really excited and really hopeful now. We’ve never had this before in our life. Never thought we would ever see her feeling better and coming off of all these medications like this.

So that’s my story, and I’m sorry for crying so much.