Roller coaster ride in finding doctor for Megan!

I am so tired of doctors in general. They make me sad, they make me feel like I can never get the right answers for Megan. I moved to London Ontario in July 2011. This was a fresh start for Megan and I after 3 years of being talked down to by doctors and being told its all in her head. Megans life since 2008 has included the following realities that doctors have no answers for:

1. She has been bleeding constantly since 2009 with her menstrual cycle. With birth control pills its basically spotting every day, and then when her pill ends she deals with extreme bleeding that makes her wear 2 pads at a time.

2. Extreme Vertigo in 2010 that had her in a wheelchair for 10 months. She was 13 years old and in a wheelchair!

3. Colds and Flus that impact Megan take 3 – 5 times longer to recover from… you and I might be 5 days she will be 15 days.

4.Insomnia – This week Megan is getting 1 hour sleep per day. This is as bad as it gets but she averages 3 – 5 hours. 5 hours is a GREAT day!

5. Liver pain is there as a good reminder if she eats anything bad. Her liver tells her quite clearly. Sometimes its nausea and sometimes she looses her appetite.

6. Extreme dryness and redness on her arms.  Constant battle for Megan. Any creams or lotions tend to make it worse and make it sting.

She is a SICK kid. She is homeschooled due to these issues.

 

I have been trying to find a family doctor since July. Initally I started via the HealthConnect program in Ontario that is supposed to match you up with a doctor. So far that has resulted in NOTHING.

I tried finding the list of family doctors accepting patients and then we end up on a list never to hear from anyone. I call and follow up and there is never a good answer !

A friend in London recently talked to a family doctor in London about Megan and she was given the name of a Hepatologist in London that actually focusses on Fatty Liver Disease! This was perfect! But then found out that because Megan is 15 she is not eligible to be seen by this doctor. We were pointed to the Pediatric Gastroentologists!

The Pediatric Gastroentologist read about Megans symptoms and said he has seen 100 cases of Fatty Liver Disease and none of them with megans symptoms. They suggest we start over with a pedicatrician and search for the root cause

I have done nothing but try to find a doctor who will treat Megan with respect and truly look into her case uniquely in Ontario. So far I have gotten no where!

I am ready to burst into tears and Megan is scared that she will never get a doctor that care! She is cynical after The Hospital For Sick Kids in Toronto didn’t help her. They even put her on anti depressants at 13! We do not need more doctors patting us on the head and saying that this is all in her head. This is her reality EVERY DAY!

What do I have to do in order to help my child? Why won’t a doctor take ownership and truly focus on finding out whats wrong with her?

We are in Canada where Medical care is free. But its looking more and more like I will have to take her to the States to get the attention she needs.

She is 15 years old with a chronic illness and this is no way to leave a child to live!

Please if you are in London share this story with your doctor and ask if they will take her case on and help her! I just need 1 doctor to truly be there for her!

Thanks

 

Michelle and Megan

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5 thoughts on “Roller coaster ride in finding doctor for Megan!

  1. Has Megan ever had her thyroid hormones looked at? There is a strong connection between fatty liver, problems regulating mentrual flow, immunity and thyroid health in nutrition/orthomolecular science.
    kind regards!

  2. Based upon my research into NAFLD, NASH, and cirrhosis, it is difficult to believe that Megan’s symptoms are caused by liver disease. Megan’s symptoms sound as though she could have Lupus. Has she been tested?

    • Over last three years I have mentioned to doctors that my sister has lupus and I have asked if Megan might they have poo pooed me and said no. She has been tested for Wilson’s disease, diabetes standard tests, thyroid standard tests, neurological tests and heart tests. The medical community has to look at her differently and stop focussing on one symptom at a time. I believe strongly now she has metabolic syndrome with pcos and hypothyroidism but until doctors look at all symptoms together I don’t think we will have a good answer.
      I have been in touch with Cleveland clinic as they have offices in Toronto and I am hoping they will review her case and help me get her to states for proper diagnosis. I agree it’s not all the liver it’s just the only thing I know for sure.

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