Petition Closed

Our Son Joshua is sick. We live in Ottawa, Canada. He has a "rare" autoimmune disorder called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep). He was diagnosed by a doctor in the United States. She initiated the treatment for this condition. We returned back home to Canada with this diagnoses as our child had been ill for sometime and we have been unable to get the proper care or treatment from CHEO. We provided CHEO with the doctors diagnoses and the treatment protocol which the doctor in the United States provided. The doctors at CHEO aren't accepting this doctors diagnoses nor her treatment protocol. Our son is desperately suffering daily. His symptoms are Tics, irritability, OCD, mood fluctuations, severe anxiety, severe insomnia, fixations etc....he has high risk behavior and is at risk of injuring himself badly. He is off the meds that the doctors prescribed in the U.S and is currently taking meds prescribed by doctors in Canada the meds prescribed here arent for PANDAS. The IVIG is the next line of treatment for our son for this condition to help him recover. He is deteriorating and suffering. Joshua isnt able to enjoy his childhood. He isnt able to attend school like other peers. Joshua's condition is limiting what he is able to do and therefore he only wants to be at home. We have had to take a leave of absence from work for over a year now to care for Joshua. We have lost our home and are struggling finacially trying desperately to help our son. Our family has watched our boy suffer for over 2 years now, with no help. We have fund raised ourselves and have traveled to New York so the U.S doctors could look at him. We now have a diagnoses and treatment plan we need CHEO to follow it and help Joshua. No child should hate the world, Joshua should be enjoying time at school and as well at summer camp etc. Our little boy is losing his childhood and is gong to suffer long term if he doesn't get the proper treatment soon! However the doctors don't want the PANDAS diagnosis nor will they provide the treatment outlined for PANDAS here in Canada. IVIG has been approved in Canada for this condition but Joshua hasn't received it. Instead we might have to prolong critical treatment because of not receiving it here in Canada. The doctor in the United States is willing to get it done however it would come with a hefty cost. It's cost is $1,000 per 10lbs of body weight. Our 6 year old should be able to get the treatment needed here in Canada. Our son shouldn't be denied the treatment because the doctors here in Canada don't agree nor do they want to call to discuss Joshua's care with the U.S doctor. Our son was diagnosed with PANDAS and IVIG is approved for this condition here in our Country. Then Joshua should be able to have access to the treatment and not have to travel and have the family pay. Our son has a right to treatment and our ministry of health should be helping Joshua get what he is entitled to. This is only prolonging the treatment he needs!! Please help us to get Joshua the IVIG he desperately needs!! No child should be left to suffer Physically nor mentally! Our family has been fund raising to also help support Joshua if we're not successful receiving the treatment here in Canada, the doctor in the United States following Joshua and his care will get it set up In the U.S. The online fund raising site link is      

http://www.gofundme.com/1neh2g

please help us support Joshua and help him get the IVIG that he desperately needs. Thank you!

 

Letter to
MPP Madeleine Meilleur
MLA Mauril Belanger
CHEO Board of trustee's, Patient advocate, and doctors
and 1 other
CEO CHEO Alex munter
Give our son IVIG that can help him recover.
Joshua received a PANDAS diagnoses he should be entitled to the proper treatment approved for this condition. He is suffering and no child should have to suffer physically or mentally.... Our son has a diagnoses like other children in Canada. These children were also diagnosed in the United States and have come back home to Canada and received the care and treatment their child needs. Our son hasn't received the care nor the treatment. We have been forced to pull Joshua off the meds that the




doctors in the United States prescribed. He is on meds that won't help PANDAS, instead these meds will treat his symptoms but not the root cause of the problem! Why is our son less inferior then other children in our country why is he unable to get the treatment for PANDAS approved in our country? We have been told by CHEO to give up on PANDAS or they will not treat or help our son. Our son has high risk behavior and we need help for PANDAS. Our son is suffering not getting the proper treatment. He suffers from tics, OCD, mood fluctuations, anxiety, severe insomnia, and rages. He is a bright little boy with a long life ahead he doesn't need a life time of problems. Our family has watched our boy suffer for over 2 years now with no treatment we have fund raised our selves and got Joshua the help in the United States, he is now home and needs treatment here in our own country. We have a health care system here, set up to take care of him but where is the treatment? Joshua is unable to attend school, summer camp or activities because of his illness, we have had to remain at home to care for him and take a leave from work, this has put a financial strain on our family; we have lost our home and all our assets trying to get our son help. The cost of treatment is $1000 per 10lbs of body weight in the United States to treat Joshua. Our family doesn't currently have the funds. Our son's treatment is prolonged while this battle continues and our family tries to find the funds for Joshua's care. We shouldn't have to do this the IVIG is approved here and should be administered. CHEO IS RESPONSIBLE and our government needs to step in and advocate for our child! What are you going to do to treat our son diagnosed with PANDAS? We want IVIG for our son to treat the root cause the PANDAS, not psychiatric meds for his symptoms....


Rebecca and Jayson Anderson