AUG 15, 2017 — Today I'm sharing Laura's story as written by her mom. How many more children will be infected and get sick before this madness stops?
Please help us meet our goal of 75,000 signatures before we meet our Federal Health Minister Jane Philpott on August 22nd - if everyone who signed this petition got one more person to sign, we would hit this goal easily! Don't stop at 1 - try to get 5 or more!
"I am sharing our recent experience with Lyme in our daughter, Laura. This is long, but parents need to know. Laura is only 2 years old.
June 8th 2017 while giving Laura a bath I noticed what looked to be a mosquito bite on her arm. We live in the country and are no strangers to mosquito bites. This one seemed different from the other bites she had. It was beet red, and really hard. Over the course of a few days the bite started to change colour and looked almost scaly and bruised.
The morning of June 15th my husband texted me at work to tell me that bite had turned into a bullseye. At this point I didn't know very much about Lyme disease, but what I did know is that the bullseye is never a good sign. I immediately left work and took her to the emergency room. The doctor said that she was just having a weird reaction to a mosquito bite and it was nothing to be concerned about.
He instructed me to keep an eye on it and give Benadryl every four hours until the bite cleared up. I specifically asked if it could be from a tick and possibly Lyme. He told me that ‘we don't have Lyme in our area’ and ‘because I didn't see the tick we didn't have anything to worry about’. I didn't feel good about the response we received in ER so I called my family Dr. Again, I asked about Lyme and was again told that because we didn't see the tick it couldn't be Lyme. I went to the pharmacy and spoke with a pharmacist, she agreed that it did not look like a normal reaction to a mosquito bite, but wasn't certain that it could be Lyme disease.
Shortly after the bullseye showed up Laura started to get sick. It started with fevers that were in the 103/104 range and lasted for a week. She got a rash over every inch of her body. I took her to emerg and we were told she was probably teething or it could be from a virus. I called her family doctor and was again told it was a virus. Each time I mentioned the bullseye and each time I was told no, it's not possible it's Lyme.
Laura started getting diarrhea, having up to 10-11 diarrhea diapers a day. She would sometimes have blood and mucous in her stool. Occasional vomiting, fevers every few days and extremely lethargic, headaches, and joint pain. My once crazy busy, non stop toddler wasn't even asking to go outside. She would lay on the couch all day and watch tv. She was asking to go to bed which in two years has never happened. When she would play outside she would play for a few minutes and then come and sit in my lap. She wouldn't even walk to the end of the driveway because she was so tired.
Then the temper tantrums started. Laura started having horrible temper tantrums that were so unlike any other temper tantrum she has ever had. She would bang her head against things as hard as she could, the floor, a wall, a window. Scratch at her face, bite her arms, pull her hair. She would wake up in the middle of the night screaming in agony and banging her head against the wall. This started happening so frequently that we were referred to a developmental paediatrician to begin the process of having her tested for autism. These temper tantrums did not start until after we saw the bullseye and the onset of the rest of her symptoms. My daughter is not autistic she is in so so much pain and she has no other means of telling you.
I took her to the nurse practitioner on July 25th. I went through all of the symptoms, showed her the bullseye rash and asked her to treat her for Lyme. She agreed and gave her a 14 day course of amoxicillin. Laura ended up having what we thought was an allergic reaction to the amoxicillin so I called back to my doctors office and asked for a different medication. The nurse practitioner was away on vacation and our family doctor flat out refused to give her a new prescription. She insisted that Laura does not have Lyme and that she has had a stomach virus for the last two months. She would not agree to treat her until Laura had a positive Lyme test come back.
Aug 5th we decided to take Laura to a top Canadian Children’s Hospital to see if we could get any further with them. They agreed to do the Lyme blood test, but insisted that the bullseye rash is an allergic reaction to a mosquito and that the bullseye that Laura had looks nothing like the Lyme rash. They also stated that the symptoms she has experienced all summer do not fit the symptoms associated with Lyme disease. They did no other testing on her and didn't even bother to check her white count or do a basic blood panel on her. They referred us to another paediatrician and said that this was out of their scope as they are an emergency department and are trained to deal with serious emergencies only.
On our way home the ER doctor at our local emergency department called and told us the stool sample came back and tested positive for a parasite. Even if left untreated this particular parasite should have cleared up on its own within 10 days. Laura has been sick with this parasite for almost two months, which tells you that her immune system is not functioning as it should. When on the phone with the doctor I asked him if this could be related to Lyme disease and he told me that he was unsure and that doctors in in our Province do not know enough about Lyme to diagnose and treat for it, that we need to seek treatment elsewhere.
Laura has been sick with the parasite for two months so not treating for it is absolutely not an option. The only way to obtain the medication in Canada is by going through the ministry of health. Numerous doctors, our nurse practitioner, my husband and myself tried for a week to get in touch with the ministry of health and not one of our phone calls or emails were responded to. This left us with no choice but to go to the United States and get the medication ourselves.
Because this parasite is highly contagious Laura has passed it onto me, so I need to be treated as well or risk re-infecting her. This medication cost $1778.40 USD. Which will not be covered by our insurance and is completely at our expense. This is something that should have been treated for in our Province.
Due to the nature of the parasite and the Lyme public health in our area needed to be contacted and an investigation needed to be completed. The picture of the bullseye rash along with her symptoms was sent to the inspector. He agrees that it is in fact Lyme and that Laura should have been treated when we initially took her to the emergency room. In his opinion there is a major flaw with the testing in Canada and that doctors in our Province are highly under-qualified to diagnose and treat for Lyme.
On Monday August 14th we are travelling out of our Province to start having Laura treated for Lyme. This is costing us thousands of dollars and is a huge strain for our family financially, but we have been left with no other option. There is a major flaw in the Canadian health care system where Lyme is concerned. As Canadians there is no reason we should ever have to leave our Province and spend astronomical amounts of money to get access to health care.
If Laura had been treated with amoxicillin on June 15th when I initially brought her to the hospital all of this could have been avoided. Due to the ignorance of doctors, my two year old child has been suffering for two months with little to no help from our healthcare system. This is a two year old child. She is just a baby and she needs help.
Canada has a Lyme crisis on their hands and needs to be held accountable."