Transcription – English – Janina and Ryan Krienke

14. Janina and Ryan Krienke.mp4: Video automatically transcribed by Sonix

14. Janina and Ryan Krienke.mp4: this mp4 video file was automatically transcribed by Sonix with the best speech-to-text algorithms. This transcript may contain errors.

Janina Krienke:
So today we're here to tell our story of how our daughter went from being a healthy, happy, active 14 year old in competitive cheer within three months, being in a wheelchair, passing out up to 65 times a day and being totally dependent on us for everything, including being fed. In March 15, or on March 15th of 2021, our daughter's life changed. It started with an uncontrollable muscle spasm in the middle of her back. Within three days we were at the Children's Hospital. The muscle spasms grew from the middle of her back to her shoulders, her neck and her head and arms. There we saw emergency care and she was diagnosed with tics. She was released the same day. From that point, her symptoms grew in volume and severity. The tics became more intense. She had simple tics, grew into complex tics, grew into vocal tics or Tourette like symptoms in April. These symptoms evolved past just the tics to extreme fatigue, hot and cold, hot flashes, cold chills, extreme sensitivity to temperature, light and noise and overall feeling of unwell. Ms.. She had chest pains, side pains, abdominal pains, a constant low grade fever and severe arm tremors. She was no longer functioning. She required 24 seven care, including being fed.

Janina Krienke:
On May 16, 2021, we took her to emergency for the first time because we thought she was actually having a heart attack. She had all the classic symptoms of a heart attack, and while we were in the waiting room of the hospital, she collapsed for the first time. She was monitored. Standard tests were done. Blood work was done. Nothing came back. Out of the ordinary that they could find. So she was released. Four days later, her pediatrician admitted her into hospital where she spent over a week for all of extensive testing. She had an MRI and EEG, ECG, extensive blood work and other testing done. At that time, again, they came up with nothing. She left the hospital in a wheelchair because she was now collapsing several times a day. Over the next two weeks from that period, her symptoms worsened again dramatically. She was collapsing up to 65 times a day. She would lose consciousness during these episodes. When she would come to, she was very confused. She couldn't remember where she was. Her surroundings often who we were. She developed tetani or numbness in her arms, fingers and feet. So she now was no longer. I am able to walk.

Janina Krienke:
She was struggling from March 15th to June 4th. Our daughter was in the hospital three times, saw countless doctors. She was initially diagnosed, like I said, with tics. But when her symptoms grew beyond tics, they diagnosed her with a dysfunctional neurological disorder. But never once we're able to explain why only offered medication. We did not accept this. So we add our own financial cost. Now started to see private clinics, one of them being a natural path doctor. It was actually this naturopathic doctor that put us in contact with another family that he saw who had a daughter with similar symptoms. We shared stories with this family in April and kept in contact with them. On June 2nd, I received another call from this girl's mother and she told us that she was referred to a private breeding clinic and had taken their daughter there. There she was diagnosed with a condition called hypocapnea. After two sessions, they felt that they were seeing some positive differences for the first time in their health journey. After this conversation, I hung up the phone and I talked to my husband, Ryan, and I said, What do you think? Is this something that we should try?

Ryan Krienke:
At this point, my exact words to my wife was, as our daughter may not be with us next year at this time, so we have to try. And my wife got in, luckily, two days later into this private breathing room to breathe out of Saskatoon. She took her in there. They hooked her up to the breathing machine. Her CO2 levels were at 19. They want a regular functioning person's CO2 levels to be between 32 and 38. She was diagnosed with Severe hypocapnea. She was given a mask exemption at that time, and she was given her breathing exercises to to start this process, healing process. We booked her in every two weeks at that time. What we found through this process is, is hypocapnea. It was a slow healing process. You don't just pull your mask off, start doing your breathing exercises, and you get better right away. If she had 50 some pass outs in June, July, then as she's into the healing process, they would go down to 20 to 30 August. To give you a range of how slow the process was. August would be 12 to 20. September was down in 7 to 12 kind of a range. So it was a very slow process coming out of this. Her last symptoms that she had as she evolved out of this was kind of December into that early January range where we haven't had any symptoms since. So kind of the February March through present. It's been a slow process of trying to get her physical health back and her mental health back. She did go to her last cheer practices of the year. We're going to the gym and her going to the gym later today. We noticed this spring kind of in the April range and her mental health improving. She's doing a lot more schoolwork the last few months where it was very limited in the fall and and through the winter.

Trish Wood:
Can I ask you just just to be clear what you're saying. Are you suggesting that the hypocapnea was caused by the mask wearing or that the hypocapnea made it worse? What how are you connecting this to masks, I guess is my question for you. And then I want to throw to the pediatrician on the panel, I'm sure has a couple of questions.

Janina Krienke:
Okay. So our daughter, like we said, loves competitive cheer. She trains very hard for that sport. She was required to wear a mask during all of that training, which was 20 plus hours a week. How it was explained to us was doing extreme physical strenuous work while wearing a mask caused Chloe to. Develop a breathing pattern that was putting in her in a state of hyper breathing which was lowering her CO two.

Trish Wood:
Okay.

Ryan Krienke:
One more point I would just like to make as we are coming out of this in January, the couple of times I did talk to the briefing specialist, it was apparent that a very high ratio of females clients over male and in particular young female. So I asked my wife when she was going in January, ask her why. She has a high female client rate and in particular teenage females.

Trish Wood:
Yeah.

Ryan Krienke:
The answer came back is that due to their menstrual cycle, their CO2 levels are already lowered. So this makes females more susceptible to masking. And in particular, young females menstrual cycle will lower even further during their menstrual cycle than a mature female. So that's why we're seeing it and we're noticing that pattern with younger females being affected by the mask.

Trish Wood:
Susan.

Dr. Susan Natsheh:
Oh. Thank you for sharing your story about Chloe. And I'm. I'm very happy that there seems to be some improvement in this. I've got to admit, this is new to me to learn about. Very interesting. I guess I'm just curious as to how you felt you were treated by the health care profession as a whole with your visits and how Chloe felt.

Janina Krienke:
We always, from the very beginning of this, had full transparency with all of Chloe's doctors. We told them every every single person that we had taken Chloe to to see what they were saying. I took all of Chloe's records from this breathing therapist, all of the graphs of her CO two during activities, and I asked for them to either affirm or deny this diagnosis. To this day, we have not had one doctor and Chloe has seen several specialists concur about the fact that Chloe has or had hypocapnea and what caused it. The only thing that our public health care system, all of them specialists included, all they wanted to do was to try to medicate her. With and the medication was for anxiety to try to one of them was like a muscle relaxant to try to help with the tic like symptoms. And then the other one was for just like because she was starting to feel very afraid of what was happening to her body to deal with that mental aspect of it physically. I don't think that, in all honesty, she has received any help. She's been dismissed. She has a mask exemption. She has been denied going into seeing specialists all during this time over the guise of COVID. So we have had to do many Zoom calls into doctors. And at the end of this, I have to say that Chloe is very strong and she has said, if I am not important and my condition is not important enough to be seen in person, to have a proper diagnosis and dialogue with my doctor, I don't want any part of it.

Trish Wood:
I think a lot of people are feeling the same way about not not being able to see their daughter in person these days. So so she's better. Her future is looking.

Janina Krienke:
Chloe is slowly getting better. She still like physically she is doing very well. But during this time of course, she suffered greatly psychologically and emotionally. And so we are still continuing down her road to recovery, but I am hopeful to where she will be able to get back to basically recovering to the person that she was or wants to be.

Trish Wood:
Well, thank you so much for doing this. And good good luck to you and and to Chloe. This is information I did not know about, so thank you. It's really enlightening.

Janina Krienke:
Thank you.

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