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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

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CanadianMommy

PANDAS doctor in Southern Ontario

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BTW - We found a gov't program for children with severe disabilities that pays our out-of-pocket medical expenses. It covers our appointments in the US, travel, accomodations, meals, meds, and even required supplements. It is based on income, so if your income isn't high enough to cover expenses for lyme or PANDAS, you might qualify. Fellow Canadian Moms, feel free to PM me if you want more info. It cost us a bit of money to apply because we had to pay for our LLMD to fill out the forms and write a letter. I thought it was a long shot at best, since I only considered one of my children severely disabled, and he had already improved dramatically with treatment. But our doc made the point that without treatment they would become severely disabled. We got approved! Our medical expenses for 3 children with lyme run over $1000 a month, and it's completely covered!

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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.

 

Wow...it is so great that all of these parents from Ontario Canada are finally connecting! We have not come across any pandas friendly doctors in Ontario. I am still on the hunt though. I am able to get antibiotics for my son sometimes, when he is sick. It is very difficult, because some doctors don't like to give them out, and others will consider giving them out, but at low doses.

 

I would like to hear about the immunologist at McMaster as well. Immunologists are also allergy doctors, right? So I could request to see that person to have my son tested for allergies again, 5 years after he was initially tested.

 

It seems like some people in Ontario are very fortunate to have a family physician who prescribes antibiotics when needed, as some of us have to go see doctors other than our child's pediatricians to get help. My son's pediatrician got a hold of a positive test for UTI that a doctor at the local walk in clinic ordered, and the pediatrician did not prescribe abx bc my son didn't have a high fever! HSC did a urine test, and it was also positive, but still not antibiotics from the pediatrician, bc ds didn't have a high fever. It didn't matter that he had a low grade fever....the ped was looking for a high fever. He said, "if he doesn't have a high fever, then it isn't a UTI." Ok...so we did another test a long time after that, in a row. One showed positive and one showed negative. Meanwhile, my son had strep at the same time that the uti issue came up, and he was around a sick grandmother who shared food out of her mouth with my son, and around a very sick child who came to our house. Thanks. Anyways... I went back to the nice doctor at the local walk in (there is only one doctor in this particular one) and told her that my son was still urinating all the time. She prescribed antibiotics, saying that if I want her opinion, you don't need to have a fever to have a uti. The nurse at the hospital also said that to me, and then she found out who my son's ped is, and what he said, and she told me that was only her opinion, and I had to go with what the doctor said. My son's ped is the head of pediatrics, and he doesn't like to give out antibiotics. So, when my son has something big, I always go to the walk in doctor who knows him well, and we also go see his ped.

 

I am on the hunt for a family physician or a pediatrician who is willing to be open minded and see a bunch of parents and kids who are concerned about pandas symptoms. I will keep you all posted when I find that person. I have a lead on a doctor. I mention pandas to families that I work with, whenever they talk about their children presenting with sudden onset of odd behaviour. One mom told me that her daughter started saying to her that she has "bad thoughts" and she is acting really emotional lately. I asked if her daughter had strep recently, and she said no. Now I realize that parents may not even know whether or not a child can have strep, because some may be symptomatic....similar to Saving Sammy...Sammy Maloney. They didn't know that he was positive for strep. It took a year for someone to decide to do a strep test on him, and then try various antibiotics and various strengths until they found the right one for many years.

 

Anyways...this mother told me that she ended up asking her doctor about pandas, and her doctor said that she had heard about it, but her daughter didn't seem to have it. The mom thinks the doctor is open to considering things, which is far better than many doctors I have come across.

 

There are some people who prefer to keep the names of the doctors who help them, private. I will respect that, but would like to suggest that we pool together to find a supportive doctor in Ontario, in the GTA, who is excited about working with families whose children present with these pandas-like symptoms, and can consult with someone like Dr. T perhaps to prescribe the correct doses of antibiotics, rather than prescribe something that won't really make much of a difference.

 

I just posted about antibiotics, and some research uncovered that you need high doses of azith to make a difference in erradicating strep, otherwise, strep will resurface. Other research looked at the efficacy of certain 10 day ones versus the 5 day ones, in terms of erradicating strep. Some research has looked at how effective abx are, by testing kids a few times after their course of abx finish, like 15 days later and 30 days later. Something like that. In order to beat this thing, we need to have someone willing to do it aggressively, like Sammy Maloney's doctor, who prescribed very high doses of amoxil clav (called augmentin in the U.S.) for a long time, not this 10 day thing.

 

Anyways...let's get a support group for Ontario parents, and lets find supportive doctors. Let's get the word out in Ontario! Together we can do it!

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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.

 

Where did you go for the lyme thing in the States? You said south of the border. Did our Canadian plan cover that? Would our work health plans cover somthing like that in the U.S.? Or...how much did it cost?

 

Thanks

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BTW - We found a gov't program for children with severe disabilities that pays our out-of-pocket medical expenses. It covers our appointments in the US, travel, accomodations, meals, meds, and even required supplements. It is based on income, so if your income isn't high enough to cover expenses for lyme or PANDAS, you might qualify. Fellow Canadian Moms, feel free to PM me if you want more info. It cost us a bit of money to apply because we had to pay for our LLMD to fill out the forms and write a letter. I thought it was a long shot at best, since I only considered one of my children severely disabled, and he had already improved dramatically with treatment. But our doc made the point that without treatment they would become severely disabled. We got approved! Our medical expenses for 3 children with lyme run over $1000 a month, and it's completely covered!

 

Is that the child disability tax credit? We applied for that through the pediatric psychologist after she had Dx DD10 with Aspergers, ADHD, motor delay and a motor/vocal tic disorder. We were declined as not being disabled enough.

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Where did you go for the lyme thing in the States? You said south of the border. Did our Canadian plan cover that? Would our work health plans cover somthing like that in the U.S.? Or...how much did it cost?

 

Thanks

 

We see a LLMD in Buffalo. There is another near Plattsburg NY. Both our family doctor and pediatrician have refused to rewrite Abx prescriptions and blood test requisitions. Doctors at a couple of walk in clinics have refused also. At one point our family doctor was the president of the Ont College of Physicians and Surgeons, the group that stopped doctors from prescribing long term Abx for lyme treatment, and essentially told me that any treatment I would seek for my daughter outside the auspices of the IDSA was voodoo. My husband's benefits will cover the cost of Abx dispensed in Canada, so we use CanadaDrugs to fill our US prescriptions (they dispense Canadian manufactured drugs to fill US written prescriptions). We pay out of pocket for the rest. $240/hr for 1 doctors appointment/month, approx.$200 liver/metabolic panels and other blood testing per month, $500/month for other supplements. I buy whatever else I can from iHerb and have it shipped to our US mailbox in Niagara Falls, NY, or from CanadianVitaminShoppe.

 

The College is saving OHIP a lot of money by denying that chronic lyme/coinfections/PANS exists. Sorry, but what is the use of OHIP if we can get no help in Ontario. Finished ranting now :D

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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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Is that the child disability tax credit? We applied for that through the pediatric psychologist after she had Dx DD10 with Aspergers, ADHD, motor delay and a motor/vocal tic disorder. We were declined as not being disabled enough.

 

No, it's assistance for children with severe disabilities. My DS8 has GAD, SPD, and mood disorder. I would think your DD would qualify with her diagnoses, but maybe it depends on the doctor and how they fill out the forms. We put in applications for all 3 boys with the diagnosis as chronic lyme. I had the doctor write a letter which was not required, and I also wrote a letter. I didn't feel like the forms allowed us to adequately explain our situation. They are not severely disabled under treatment. But without treatment DS8 was severely impaired, and all 3 boys would continue to get worse. We made the point that they required this treatment to prevent a severe disability. I was shocked when we got approved.

 

http://www.children.gov.on.ca/htdocs/English/topics/specialneeds/disabilities/index.aspx

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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 :)

 

I'll be thinking of you tomorrow!

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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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