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CanadianMommy

PANDAS doctor in Southern Ontario

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Good evening to all:

 

Hoping this forum may be able to assist us as you all seem to be very much in-the-know when it comes to PANDAS. Do any of you know of a PANDAS doctor in the province of Ontario? Any and all assistance would be greatly appreciated!! Thank you in advance!

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Many thanks momcap....your information was most helpful. I am still searching and will let you know if I find anyone. Our GP is much more receptive that the ped, who basically said that kids do all kinds of crazy things,.............dont' really comprehend why these people find this so hard to accept.

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Ya, no kidding. I was sitting in my doctor's office on Tues with labs - ASOs chronically in the 500s, with a baseline of 27 from years ago, Cunningham's in the HIGH PANDAS range, anti-dopamine 1 four times higher than normal, positive lyme western blot, very deficient vit D (all labs that I requested and most of which I paid for!!!). And my doc says, "We have to consider the possibility that the pain is psychosomatic." Argh!!!! Sometimes I want to shake them and yell at them, but I know it won't do any good.

 

I hope you can find a PANS doc ASAP and that your GP is willing to help in the meantime. Some of the folks here might be able to chime in with useful tests and general treatment advice in the meantime. Some things I found helpful:

* test for strep via throat culture and blood tests (I couldn't find a lab that could do anti-dnase B, but you might have better luck than I did)

* consider testing the family for strep carriers

* test for other possible PANS triggers like mycoplasma and lyme

* see if GP will prescribe a longer course of antibiotics, and document any changes

* try ibuprofen. Many see an immediate temporary relief of symptoms.

 

There is a wealth of information here on the forum and I hope you find all the help you need to get your child well!

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We had a throat culture, which I had insisted on ...the doctor did it just to rule it out as she didn't "see"the strep and didn't think that was it....I told her to humour me and lo and behold I was right., positive for strep....Mom's usually are right ; ) ....I know my child and I knew this was something different....so we caught it early. I also googled and tracked down Dr K and did a phone consult within the first week with him. I also asked to be swabbed recently and waiting for results. Also had follow up ASO T for my child and just has to track down those results....waiting now for them to be sent to me

 

I am documenting everything and like all of you LOL.....I now watch my child like a hawk!!! Hard to distinguish what may be PANDAS and what is typical kid behaviour LOL

 

I have used Advil at any sign of being sick (cold etc....how safe is it to use daily though?

 

Honestly....this forum has been the most helpful so far....I went back to the beginning and have read every single post.......so thank you to you all!

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Sounds like you're already doing all the right things! I don't know how safe Advil is to use daily. Dr. T told us to use it daily for short periods of time when DS was in crisis. The dose he told us to give was higher than what the bottle says. So it's definitely something to discuss with a doctor.

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We had a throat culture, which I had insisted on ...the doctor did it just to rule it out as she didn't "see"the strep and didn't think that was it....I told her to humour me and lo and behold I was right., positive for strep....Mom's usually are right ; ) ....I know my child and I knew this was something different....so we caught it early. I also googled and tracked down Dr K and did a phone consult within the first week with him. I also asked to be swabbed recently and waiting for results. Also had follow up ASO T for my child and just has to track down those results....waiting now for them to be sent to me

 

I am documenting everything and like all of you LOL.....I now watch my child like a hawk!!! Hard to distinguish what may be PANDAS and what is typical kid behaviour LOL

 

I have used Advil at any sign of being sick (cold etc....how safe is it to use daily though?

 

Honestly....this forum has been the most helpful so far....I went back to the beginning and have read every single post.......so thank you to you all!

 

 

We are going through the similar hoops... have a great family doctor who admits he knows nothing about PANDAS, but is willing to humour me with as many swabs, antibiotics and bloodwork reqs as I want. Son is ticcing badly right now, waiting on a swab from Tuesday, but ticcing has been going on for months, inspite of 3 rounds of antibiotics- 2 of which our whole family went on. Have not found a doctor in Southern Ontario who deals with PANDAS, but went to Sick Kids recently and met with Dr Arnold, who is a pyschiatrist focussing on OCD. He wrote an article that I found online about OCD and PANDAS(not our son's biggest issue with PANDAS- mostly ticcing and anxiety) and so I had my family doctor refer us to him. Dr Arnold did a full pyschiatric evaluation ( "you have a normal healthy kid--it is not PANDAS, but likely a ticcing disorder associated with STREP" I am not sure what the difference is!! ) and referred us to a Habit Reversal Therapist to deal with the ticcing. After first visit, impressed, but need to wait to see results.

Have been to a neurologist as well, who says as well that it is not PANDAS, but likely a ticcing disorder associated with STREP.

I don't really care what they call it. It is happening, he is sick and there seems to be no guidelines to follow. Very frustrating. I just read on the forum that dental checkups can cause flareups as well! Yikes!

Edited by allie01

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Dr Arnold did a full pyschiatric evaluation ( "you have a normal healthy kid--it is not PANDAS, but likely a ticcing disorder associated with STREP" I am not sure what the difference is!! ) and referred us to a Habit Reversal Therapist to deal with the ticcing. After first visit, impressed, but need to wait to see results.

Have been to a neurologist as well, who says as well that it is not PANDAS, but likely a ticcing disorder associated with STREP.

I don't really care what they call it. It is happening, he is sick and there seems to be no guidelines to follow. Very frustrating. I just read on the forum that dental checkups can cause flareups as well! Yikes!

 

A ticcing disorder associated with strep IS PANDAS, isn't it?! What's the difference? Why are they determined to not call it PANDAS?

 

DS8 continued with verbal tics while on different antibiotic trials for PANDAS - amoxicillin, penicillin, azithromycin, augmentin, biaxin. He didn't stop until we got him on a very high dose of amoxicillin (crazy high at 4500mg/day for a month for lyme, and then dropped to 3000 mg/day ongoing). We have added other abx, but it was just the sky high dose of amoxicillin that stopped it before adding anything else. Our LLMD says the dose has to be that high to reach the brain. He has not had a single verbal tic in the 9 months of lyme treatment so far.

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All of us in Ontario should support one another, and swap stories and experiences to help our children. There are finally a few mothers on this forum who are from Ontario Canada.

 

Greetings!

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Must be some politics going on there - "ticcing associated with strep" REALLY!!! So what does the "s" in PANDAS mean anyway???? Did you not ask these good Drs what on earth that means and why they're afraid to call it PANDAS?

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Must be some politics going on there - "ticcing associated with strep" REALLY!!! So what does the "s" in PANDAS mean anyway???? Did you not ask these good Drs what on earth that means and why they're afraid to call it PANDAS?

 

Yes..."tic disorder associated with strep" is what two Canadian neurologists from 2 different hosptials wrote down on the sheet they sent to his pediatrician. They both said that his symptoms were consistent with pandas. I don't remember if they both wrote that down though. Will have to check the next time I go in to see the pediatrician. So, they both agreed that it fit a pandas diagnosis 2 years ago when my son, then 7, experienced his first pandas episode, which was mild compared to this time, two years later, at age 9.

 

We need to remember that some doctors are not ready to be progressive and make the links between strep and pandas though, even though it is well known that infections cause illnesses including mental illness, for example, syphylus (sp?) caused some kind of mental illness years ago and penicillin was the cure, sydenham's chorea is brought on by strep and long term prophylactic antibiotics are the treatment, strep causes rheumatic fever and antibiotics are the treatment, tick bites can cause lyme disease which is treated with antibiotics.... I am sure that there are more well researched connections out there in addition to the ones I mentioned. There are some doctors/psychiatrists who are linking infection with ocd...which is connected to PANS really.

 

Also...a bunch of "good doctors" went out to meet with the 12 girls in LeRoy who had a bunch of movement issues and vocal issues in addition to other symptoms like anxiety, and they decided to call it "conversion disorder" until the great neurologist, Dr. Trifiletti, took a trip down to LeRoy to help out these girls, tested them all for various things, and discovered the link between strep, mycoplasma and their behaviour. He told people that they had PANDAS. Parents and kids were relieved that this bright doctor took the time to question this silly "conversion disorder" by doing further testing to rule out everything, and finally helped these girls. Dr. Bouboulis was also helping out some girls there. It is great doctors who don't just follow the crowd like sheep because it is easier to be a sheep than to be a researcher and dig deep and find the underlying reason for things and come up with a cure. If it wasn't for great creative minds and hard/dedicated people throughout history, where would we be?

 

So...Dr. Sweedo got the ball rolling, and Dr. Trifilletti finally put PANDAS on the map, as did Sammy's mother...in addition to many other people who are dedicated to spread the word. Some doctors have seen first hand the detrimental effects of strep on a child, including two well publicized people: Sammy (from Saving Sammy) and Jamie (Jamie's story).

 

It seems really absurd that so many doctors don't know anything about PANDAS, which will now be called PANS. It seems even more absurd that some have heard of it, and are afraid to do anything. Probably because they need some kind of exact science telling them what to do, or perhaps they are afraid of law suits. I don't know.

 

However, there are many great doctors who do know about PANDAS/PANS and help out kids daily. There are also other great doctors who are willing to learn more about it, and want to help kids get better. I believe that these type of doctors got into the medical profession for the right reason: to make a difference in people's lives, to help save lives, to improve the quality of people's lives, and to try to come up with some kind of treatment or cures to help people.

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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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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?

 

Welcome khen! This thread is getting older (started in January) and your reply might get lost in the shuffle. You might have better luck getting a response if you start a new thread explaining your situation, or even copy your post from here and use it for a new thread.

 

We have not had a brain scan. I've considered asking, but I'm worried about the radiation and I already know that the basal ganglia and dopamine levels are factors (based on symptoms and Cunningham's tests). I haven't ruled out a brain scan for the future, but for now I don't think it will give us any information that we don't already know.

 

I've already emailed you my doctor recommendations after that "lovely stranger" put us in contact. :) Hopefully some others will chime in with docs that have helped them. If you find that a PANDAS/PANS diagnosis fits and PANS treatments help, then you are probably going to end up with a US doc. There are a handful of docs in the US that are knowlegeable about treating PANDAS. I have yet to find any doc in Canada with that level of knowledge. Perhaps there is a doc here who will work with one of the US docs via phone consults. Our pediatrician was willing to do that for a while. And I'm very interested to see if Dr. D at Macmaster has furthered his interest in PANDAS. Keep us posted!

 

Good luck and welcome to the forum!

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The pediatric psychologist we saw in Niagara Falls, Ontario, suggested that my then DD9 may be suffering from PANDAS when she began having exacerbations of ticcing (motor/vocal), rages, decline in handwriting, increased urinary frequency and general sensory overload with strep infections (which would decrease considerably with Abx treatment but then reoccur). She discussed IVIG and PEX with me but then told me that in Ontario neither would be prescribed unless the child was incapacitated. There was no mention of the use of anti-inflammatories. She suggested that I go to the Tourette's clinic in Toronto to try and address some of the ticcing problems. After discovering that lyme/coinfections can also be responsible for PANS symptoms we headed south of the border to have testing done trough Igenex (we also ran an ELISA here). The ELISA was negative, but the Igenex WB was IND for lyme and positive for bartonella. DD (now 10yo) has been undergoing treatment with combo Abx for a year now and we have seen a 90% improvement in all of her symptoms. She is now a sweet, loving child. Her PANS symptoms no longer flare to any real extent with infections, but we do see them ramp up with medication changes (probably herxheimer reactions). Finding help in Ontario was difficult, but I didn't try McMaster. I hope Dr D will be of some help to you. Please do keep us posted, it would be nice to find treatment at home instead of having to cross the border and pay out of pocket.

 

Your child is so lucky to have a good inquisitive Mom! This is a great forum and you will find lots of information here.

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