khen
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Posts posted by khen
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Thank you so much for signing
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Hi everyone,
I have not posted in this forum in quite some time, mostly because my kids have been doing pretty well over the last couple of years. However, in the beginning, this forum was a lifesaver and also my link to finding other Canadian parents at that time.
I hope it is permitted that I post this here and if not no hurt feelings if it is taken down....
I just wanted everyone to know that the organization PANDAS/PANS Ontario that I co-founded a few years ago is working on a petition to the Canadian Paediatric Society asking them to create a position statement and practice point for PANDAS/PANS and to make it available to their members immediately. We are really struggling still for quality care in our country and especially in Ontario. We're hoping that this will be a start to making some positive change.
Please check out the link to the petition and please consider commenting about your story at the bottom and sharing it with as many people as you can.
Thanks for listening! And Ontario parents...if you haven't connected with us and are looking for local support and other families from your area to discuss practitioner options and be involved in our events check us out here....
https://www.facebook.com/ppontario.org/
https://www.facebook.com/groups/pandaspansontario/
Much love...Kerry
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Your son is engaging in echolalia, which is considered a vocal tic. My DS did this very briefly--weirdly during the entirety of a visit to the opthamologist and then it disappeared. I've been told that if a child has Pandas, the chances that a sibling has it are about 40% so you are right to have a high index of suspicion.
I figured as much. Thanks so much for your reply.
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Hi Everyone,
Just wondering if anyone has any good links for reputable, encouraging research papers on Pandas/Pans etc. I'm in Ontario, have been trying to get a diagnosis for almost 8 months now for my 5 yr old son and am seeing a new doctor next month. I'd like to be able to bring some fact based, helpful stuff along with me this time. I'd have gone to one of the US specialists if I could afford it but haven't been able to make that happen yet. This new doc is a developmental neurological pediatrician and I am really hoping she will be more open or knowledgeable of this whole thing.
Also, unrelated to the topic....my son is doing this new thing where he is always repeating what people say or things he hears on tv in this weird matter of fact way. Is this a common thing for anybody else? I've also had my daughter, 6 seen by a naturopath for chronic yeast issues and have found out that on top of having high yeast and parasite levels she also has high metal toxicity and chemical toxicity levels. They likened it to their Autism patients' levels. This leads me to think that maybe my daughter could be headed down this road also..or maybe already is? She had some transient tics as a small child and for the last year or so has been increasingly defiant and full of rage when asked to do the tiniest of tasks, huge temper temper tantrums. Any advice would be appreciated. I know this can run in siblings and I also have a 2 year old girl.
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HI, just wondering what other people's experiences are with ibuprofen use, the frequency of use, the results or safety of it? Our doctor has us giving it to our son three times a day for four weeks during a flare up to test out and create a timeline of symptoms while trying to determine if he has Pandas or not. It does seem to make a huge difference for our little guy but I am worried about the side effects. Also have been trying to find a doctor in the US to see us as we're from ontario without a knowledgeable pandas doctor. Due to costs I am looking for one that would not involve much travel. I saw Dr. Frej's name on the list here from detroit area. His receptionist says he'll see Pandas patients but other than that I have no knowledge of him.. Was hoping to find someone who has seen him to share their experience?
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Hi Everyone...just filling you in on what happened at our appointment yesterday. As we were aware before we went there, he even stated that he does not have much experience with this but was happy to look into it. He was really pleasant to talk to. He took a brief history, but was basing his findings about my son mostly on the psychiatric evaluation that my doctor had forwarded with the referral. I found this a little frustrating because this was a psychiatrist who spent only five minutes with our son and diagnosed the behaviour (ocd, gad) and not a cause for it. I hadn't even heard of pandas/pans when we did the telepsych appt. I just really felt like I had a lot more to share with him with regard to his symptoms and why I think it's pandas/pans. Anyway, because we saw some results with using the ibuprofen on two occasions he prescribed a schedule for us to use it daily with him for a period of time and then off for a period of time, journalling all the symptoms changes etc until we see him again in 6 mos. I suppose he'd be more comfortable seeing more of a pattern and connection to the inflammation before deciding to pursue a diagnoses. Makes sense I suppose...and he says as he is a rheumatologist he he uses ibuprofen like this with kids all the time and says it is safe to do so. He did some blood work also, so we'll get the results from our family doctor. He would only test for Celiac and the Aso t. He indicated, more bloodwork wouldn't really determine a diagnosis anymore than the experiment with the ibuprofen would. He also gave me a print out of the conversation he had with Dr. Swedo and her findings on Pandas and is going to email me some resources. The conversation with Swedo was from two years ago though and I don't think he has looked at Pandas since then. This may have been you momcap..who asked him to do that, he said it was a patient who directed him to her. So what does everyone think? I was thinking of giving it a go and and if things get a lot worse again at some point then maybe pursue a Us doc.....and also during any flare ups etc...get him swabbed for strep? He is putting in his report that my family doctor should do this as I request it.
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Thank you so much for your responses! We are headed to Hamilton tomorrow...2.5 hr trip for us! I will definitely let you know how it all goes when we get back. Nice to hear from you momcap...if we end up with the diagnoses we will definitely be needing to apply for that program you were speaking of. We have no extra money in the budget to be travelling to the US(unless anyone knows of a doc in the Detroit area) let alone paying for the care and medication. If you still have my email maybe you could pass the info on? I am just so thankful that because of moms like you on the forums I am able to go to this appointment informed and prepared with all of our questions and concerns. I'll fill you in on Dr. Dent this weekend
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Hi Everyone...I was so happy to see this post today. I've suspected Pans/Pandas for my son for a couple of months now. Only after a lovely stranger was kind enough to suggest I check into it after I commented on a blog of hers one night. I never would have even known about this possibility. I too am from Southwestern Ontario and no one in my city has even heard of this or willing to discuss it with us. Very frustrating! Luckily our family doctor agreed to a referral to an immunologist that was recommended in Hamilton. His name is Dr. Dent at McMaster. Has anyone heard of him or seen him? Apparently he does look at Pandas patients. We are seeing him this coming Friday. My son is four and has Obsessive Compulsive Disorder, Generalized Anxiety Disorder, Sensory Processing Disorder and seems to have a lot of other associated symptoms. I also gave him ibuprofen one weekend when he was out of control with a certain compulsion (peeing) and it literally stopped it in it's tracks the same day. I started journalling as well and am definitely seeing a pattern with illness so I hope I am on the right track. The psychiatrist who diagnosed him prescribed prozac so I definitely want to check out every possible cause for this before starting that kind of medication. Any recommendations for doctors in ontario would be great in case this one does not work out. Also...did any of you have a brain scan done on your child?
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My Kid is Not Crazy Screenings in Canada
in PANS / PANDAS (Lyme included)
Posted
Hi everyone,
We wanted to post and let the Canadian members know about 3 confirmed screenings so far of the PANDAS documentary My Kid is Not Crazy by Tim Sorel.
Ottawa On area on May 11 -https://centrewakefieldlapeche.ca/event-2456054/Registration
Oakville, On on May 13 - http://mykidisnotcrazyoakville.bpt.me/
Calgary, AB- on June 3 https://www.eventbrite.com/e/my-kid-is-not-crazy-movie-scre…
Please visit the above ticket sites to purchase tickets and get more info for these great events.
We also have a parent in our Ontario support group who is a talented photographer and writer. She has been putting together a slide show to show at the screenings to bring awareness to how many children in Canada are affected and what kind of impact it can have. Doctors in Canada desperately need to see their faces and hear our voices to know this exists and needs recognition now.
If you are interested in helping to make this project a success can you please send any of the following to jennyducharme@outlook.com. : a before and after photo of your child or just a current photo now with either their first name, age and city/province or you can send a quote with name, age, city/province or you can simply send her a name/age/city all on its own. She will work with you to help you feel the most comfortable with what is submitted. No last names please. She has been working on this for some time now and hopes to finish up by the end of the week so please send anything you can in asap.
Or if you are interested in hosting a screening in your city please contact me for more information.
Much appreciated!
Kerry