My daughter has been sick since 2008. She was 12 years old when her life changed for the worse. Initially it was a bad case of Pneumonia that took 3 rounds of strong anti biotics to clear up. Then she got Mono and that took another 8 months of her life. We were dealing with pediatricians, blood tests, ultrasounds, and family doctors. In 2009 she started bleeding for her menstrual period and it was excessively heavy. She went to her first gynacologist and she was put on birth control pills to control that bleeding. Through this 2 year time period all I ever wanted was to get Megan to the Hospital for Sick Kids where they would actually care about her and find the root cause of her health issues. It was my dream, it would be the answer for us.
In 2010 Megan lost her ability to walk. She had extreme vertigo. She looked like she was drunk when she walked, I took her to the emergency department at Markham Stoufville hospital and she was completely ignored. We waited 4 hours and she still was not brought in to be diagnosed.
We took her to Sunnybrook hospital the next day and they actually treated her wonderfully. But because she was a child they transfered us to the Hospital for Sick kids and I thought YES we finally have a chance to have Megan looked at by this world class hospital! We got Megan into a Wheelchair as she was not safe walking when she was catching herself on walls and could possibly injure herself.
All of my hopes and dreams were coming true for Megan. The doctors at Hospital for Sick Kids would surely look at Megan and work hard to help her get healthy. I don’t know how to describe in words what this meant to me, but it was very positive. I was sure we would finally get answers.
Our first doctor in the Hospital was an Ear Nose Throat doctor who tested Megan thoroughly for any ear issues that might be causing the dizziness. He could not find anything specific but he was very interested in Megan’s case and refered us to the Consultant Clinic where he said we would get an experienced Pediatrician who could pull all the doctors necessary for Megan to get diagnosed.
At the hospital for Sick Kids you can’t help but notice all the kids with burns, cancer and other serious medical illnesses. In reference to the way those kids are treated I give Sick Kids an A+. Megan felt strongly that those kids deserved the attention of the doctors and she has cut her hair twice in the last 2 years to donate to kids with Cancer undergoing radiation. So we totally respect the hospital for that work.
We finally got to meet our consult team . An old friendly doctor who fully analyzed Megan’s walk and I felt good, this doctor would take a hold of Megan’s case and fight for her, thats what I expected and hoped for.
We were scheduled for a consultation with Neurology and megan had an MRI, and a Cat Scan. The Neurology department didn;t find anything wrong in her results either. They decided to put Megan on a drug that might stop the dizziness. Megan took that drug for 3 weeks and got no results so we stopped that one.
The Pediatrician then suggested we bring Megan in for a week so that doctors could review her case and run any other tests while she was in the hospital.
Again I felt hopeful, surely with Megan in the hospital we would get answers. Our pediatrician forgot to mention he was leaving for Africa and would not be in the hospital while Megan was there. He had left instructions for Neurology, Psychology, and Physiotherapists to review her case in his absence.
I slept on a couch with Megan for a few nights that week. It was not easy being at home knowing she was lying in a hospital bed.
I very rarely saw any doctors with Megan that week. They did not run any tests on her other than testing her balance by making her do exercises in her room. I was getting concerned and things got worse when the psychologist came in to see Megan and suggested that we try putting her on Zoloft to settle her nerves and possibly resolve the dizziness. I cried and tried to make it clear that Megan had been told this was in her head a lot over the last 3 years and the last thing I wanted Sick Kids hospital to do was confirm that by putting her on an antidepressant.
My heart dropped at this point. I realized that the doctors were not on our side and they had no idea what was wrong with Megan. I do not feel that we ever truly had a doctor there that knew what was wrong with Megan and the reaction to patients that doctors can’t diagnose in Ontario is quite frequently to put them on anti depressants and say its all in their head.
I had higher expectations of the hospital for sick kids. I had been there as a child due to a kidney disease, my sister had been there for childhood illnesses. My sisters children had epilepsy and other stomach issues that were properly diagnosed and treated at the hospital.
Were they really sending Megan home with Anti depressants and a pat on the head. Yes thats what they did. I took her off the anti depressants after 3 weeks when they made no difference to her dizziness or her mood for that matter.
We went to follow up appointments at the hospital but my mindset had changed, I knew they just wanted to see that this was in her head and they were not really trying to find the answer anymore.
We moved to the holistic side and changed Megan’s food to a very strict diet, We had her see an osteopath, We took her off the birth control pill and 3 months later she was able to get out of the wheel chair and walk again.
I wish I could say that I was happy with the Hospital for Sick Kids in Toronto. Sadly my experience tells me that they are great for kids that they can put into a silo of a specific disease. But as soon as you are a mystery patient they don’t treat you with respect or consider your case serious.
We now live in London Ontario and its 2 years since the hospital for Sick kids experience. It still exists as a knot in my stomach of disappointment, of breaking my heart.
We are giving London Ontario doctors a chance to diagnose Megan now. Megan is still bleeding constantly and its been 2 years now. Megan sleeps 3 hours a day, Megan catches any cold or flu and holds on to it for a month instead of a week. Megan does have a diagnosis of Non Alchoholic Fatty Liver Disease but that is only a small piece of a much larger puzzle. I will not be going in with blind hope to the doctors in London. My expectations are low. If they cannot find out what is wrong with Megan I won’t freak out. We will just take her to the Cleveland Clinic in the states and hope that they will be able to find the root cause of Megan’s health issues.
I wrote this for the Toronto Star who wants to do a story on Hospital for Sick Kids. I hope that things change in the future for kids like Megan and they will take them seriously.
Michelle
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