PANDAS resources in Canada?

[momcap]

Has anyone found a PANDAS-educated doctor in Canada? Our doctor has heard of PANDAS and is sympathetic, even willing to read any info I can gather. In the meantime he is only willing to give a regular 10 day course of penicillin following a positive throat culture or high ASO titer. Clearly we need more than that!

[PANDAS_Denmark]

Has anyone found a PANDAS-educated doctor in Canada? Our doctor has heard of PANDAS and is sympathetic, even willing to read any info I can gather. In the meantime he is only willing to give a regular 10 day course of penicillin following a positive throat culture or high ASO titer. Clearly we need more than that!

 

Hi momcap,

 

Sorry to say, that I personally don´t know of a PANDAS-educated doctor in Canada, but you might show your doctor this article :

 

Evidence-Based Guidelines on the Use of Intravenous

Immune Globulin for Hematologic and Neurologic Conditions

Paula Robinson, David Anderson, Melissa Brouwers, Thomas E. Feasby, and Heather Hume,

on behalf of the IVIG Hematology and Neurology Expert Panels

A 2007 Published by Elsevier Inc.

 

(http://www.bloodmed.com/contentimage/guidelines/2854.pdf)

 

 

"In Canada, intravenous immunoglobulin (IVIG) use

has increased by 115% over the past 7 to 8 years.

Given this increased usage, Canadian Blood Services

and the National Advisory Committee on

Blood and Blood Products for Canada identified

the need to develop and disseminate evidencebased

guidelines to facilitate appropriate IVIG use.

As a result, guidelines for IVIG use in hematologic

and neurologic conditions have been developed

and are published in this supplement of Transfusion

Medicine Reviews. This commentary provides

a brief description of the process used to develop

these guidelines and includes a summary of the

recommendations for IVIG use in the various

conditions evaluated.

 

...

 

IVIG is recommended as an option for treatment of patients

with PANDAS."

 

All the best wishes,

PANDAS_Denmark

[kimballot]

You may want to PM Sweet Cheeks Mom - I know she has been looking in Canada as well. I've not seen her online lately, but she might reply to a PM.

[momcap]

Has anyone found a PANDAS-educated doctor in Canada? Our doctor has heard of PANDAS and is sympathetic, even willing to read any info I can gather. In the meantime he is only willing to give a regular 10 day course of penicillin following a positive throat culture or high ASO titer. Clearly we need more than that!

 

Hi momcap,

 

Sorry to say, that I personally don´t know of a PANDAS-educated doctor in Canada, but you might show your doctor this article :

 

Evidence-Based Guidelines on the Use of Intravenous

Immune Globulin for Hematologic and Neurologic Conditions

Paula Robinson, David Anderson, Melissa Brouwers, Thomas E. Feasby, and Heather Hume,

on behalf of the IVIG Hematology and Neurology Expert Panels

A 2007 Published by Elsevier Inc.

 

(http://www.bloodmed.com/contentimage/guidelines/2854.pdf)

 

 

"In Canada, intravenous immunoglobulin (IVIG) use

has increased by 115% over the past 7 to 8 years.

Given this increased usage, Canadian Blood Services

and the National Advisory Committee on

Blood and Blood Products for Canada identified

the need to develop and disseminate evidencebased

guidelines to facilitate appropriate IVIG use.

As a result, guidelines for IVIG use in hematologic

and neurologic conditions have been developed

and are published in this supplement of Transfusion

Medicine Reviews. This commentary provides

a brief description of the process used to develop

these guidelines and includes a summary of the

recommendations for IVIG use in the various

conditions evaluated.

 

...

 

IVIG is recommended as an option for treatment of patients

with PANDAS."

 

All the best wishes,

PANDAS_Denmark

 

Thank you. The link did not work but I was able to find the article from the information you gave. I appreciate the help!

[momcap]

You may want to PM Sweet Cheeks Mom - I know she has been looking in Canada as well. I've not seen her online lately, but she might reply to a PM.

 

Thank you! I sent a PM.

[TessaKrista]

It's nice that your doctor is at least willing to read about pandas. It appears that doctors in Ontario are reluctant to give out antibiotics, unless there is a confirmed infection. Very very difficult to get antibiotics for our children. I don't know if doctors are more willing to give adults antibiotics though. I see that there is this strong consensus among pediatricians against prescribing antibiotics.

 

Because of this forum, I have learned so much! My son's pediatrician at the time (we have a new one now) would not even test for strep when he had a very bad illness and sore throat one month after a confirmed and treated strep infection, saying that it would be positive anyways, and we wouldn't really know if it was real. So, no test no treatment. Sadly, his behaviour changed after that. I now know that this is not ok. Plus, I always suspected that he had sinus issues, but she would not even consider it. I now know that this is not ok either.

 

When my ds7 had 10 days of 300 mg of azith and 5 days of 150mg, he no longer had this terrible cough that he had lingering, no longer had this sinus problem (he could breathe), and his chest didn't hurt. Interesting. He is prone to allergies, and it appears that anything that lowers his immune system gets him all stuffed up again. So, just two weeks ago when it was hot, I let him frolick in the very cold splash pad for a few hours, and of course, the nose thing happened again, and his ears are itchy again. He felt a little hot, but not enough to be a full fledged fever. I started seeing some of the weird mouth movements arise, but not like before. I am afraid. It all started with an illness last time, and now I am acutely aware that ANYTHING can set it off to return to that full fledged thing again. It is so scary.

 

I am off to see who is willing to consider antibiotics, knowing the anti anti-biotic culture in Ontario. No, I have not had luck with doctors re: pandas here in Ontario. People are not willing to do the tests that we request. The tests are free, yet we have to get the doctor's consent to do the testing. There is a private clinic in Toronto that costs 3 thousand dollars to become a patient, and they claim that they will do any of the tests we like, because the tests are free. I believe that we can only have 3 visits. This type of clinic, as you know, is not the norm in Canada. All or our stuff is free. My friend told me that during the H1N1 scare, some people went to the private clinic and paid 1 thousand dollars to get tested for H1N1 at the time, because the government opted to just assume that everyone who presented with flu like symptoms could likely have H1N1, rather than testing all. Vaccines were the solution.

 

So...keep looking. I know the story, same as you... the doctor will prescribe antibiotics only if there is a positive infection. So, we have to pass the word around, and help others whose children suddenly change.... and let them know that they should get tested for strep right away, while the infection is there. Not only will doctors treat the infection, which is good, there is also a strong possibility of eradicating pandas if it is caught right away. I read somewhere that if it is treated immediately, then the chances of eliminating it are excellent. Otherwise, we have to continue searching for good pandas doctors.

 

There is a psychiatrist in Ontario who talks about linking pandas and ocd. If that is your child's predominant issue, then I will get you that number. Bear in mind though, that psychiatry is still using their standard meds, and not exploring antibiotics. I will have to dig it up, but there was some research funded by a pharmaceutical company regarding inflamation. I believe that it was autism with pandas mentioned as well. Anyways, when the doctor started seeing the inflamatory component, that was it. The pharmaceutical company decided not to fund any further research. Pharmaceutical companies appear to prefer that people use anti-depressants and anti-psychotics rather than antibiotics. Must be more lucrative for them. I will have to dig up that research. I have been doing A LOT of research lately, trying to figure things out, and considering plunging into research on this topic as well.

 

Take care!

[momcap]

Sweet Cheeks Mom - I sent you a PM. Boy is it hard to get antibiotics in Ontario. I brought my 3-year old in last year when he had pink eye and the doctor said they are no longer treating eye infections with antibiotics. I argued and she said that unless his eye won't open or is bleeding (YES, she said bleeding), then they won't do antibiotics. What? Meanwhile my other kids got pink eye too. Then we went in with scarlet fever. They said it was viral and only did a strep test at my insistence. So a full week of untreated scarlet fever waiting for tests to come back, and once again the other kids got it before the tests came back to confirm it was in fact scarlet fever.

 

Yesterday I went in. I've had a sore throat for a week, then it moved into my sinuses. I have an upset stomach and a high fever. I had to argue just to get a throat culture. Apparently that's only a 2 on the strep scale so they normally don't swab unless you have more points towards strep. Then the doc told me there is much talk going on in the medical community about not treating confirmed strep with antibiotics anyway. He said it only makes the infection go away a little quicker, and doesn't do much else. They are more concerned about creating antibiotic resistant strep than they are about rare complications. I'm starting to think those "rare complications" aren't so rare at all.

 

Oh, and about pharma companies...ya, our 10 days of penicillin cost $3 and change. Not much money to make there.

 

I'm feeling rather cynical this morning.

[TessaKrista]

Hi..wondering if you found a pandas friendly doctor in Canada. I was thinking of heading to the U.S. to see Dr. T. Will have to contact him.

If you have found someone, please forward that doctor's name.

 

My ds is going through another pandas episode, and getting antibiotics isn't really easy.

[EAMom]

 

Yesterday I went in. I've had a sore throat for a week, then it moved into my sinuses. I have an upset stomach and a high fever. I had to argue just to get a throat culture. Apparently that's only a 2 on the strep scale so they normally don't swab unless you have more points towards strep. Then the doc told me there is much talk going on in the medical community about not treating confirmed strep with antibiotics anyway. He said it only makes the infection go away a little quicker, and doesn't do much else. They are more concerned about creating antibiotic resistant strep than they are about rare complications. I'm starting to think those "rare complications" aren't so rare at all.

 

 

OMG...that is insane.

 

Oh..btw, I just had the flu and the doc rx'd me Azith. for a possible 2ndary sinus infection. I was also supposed to do these saline nasal washes too...but found this stuff, xlear, and it is AMAZING. It's very soothing. Xlitol is antibacterial, and I think grape seed extract is too?

 

http://www.amazon.com/Xlear-Nasal-Wash-1-50-Ounces/dp/B000QYNWS2/ref=acc_glance_hpc_ai_ps_t_2

 

I wonder if you use xlear on your son a couple times a day, if that would help prevent more strep infections. Also, use xylitol mouth rinses a couple of times a day.

[3boysmom]

I wonder if you can buy supplements in Canada and then try the equivelent for antibiotics. I know many on here go that route, like olive leaf extract or something like that. You can post a new topic and others that use this approach can chime in. Then can you get those supplements on-line? I obviously know very little about this approach!

Edited March 19, 2012 by 3boysmom

[momcap]

Hi..wondering if you found a pandas friendly doctor in Canada. I was thinking of heading to the U.S. to see Dr. T. Will have to contact him.

If you have found someone, please forward that doctor's name.

 

My ds is going through another pandas episode, and getting antibiotics isn't really easy.

 

Nope, sorry. I tried all the major medical centres somewhat close by - Toronto, Hamilton, London. We've seen neurologists, infectious disease, allergy, rheumatology, cardiology, developmental behavioural pedi, you name it. All the while DS was collecting an alphabet soup of psych diagnoses and wound up in the juvenile bipolar clinic at CPRI in London. Psych drugs didn't help at all. We've been to so many docs I've lost count. The closest we had to "success" in Canada was at MacMaster Children's. We saw the head of Immunology and Rheumatology who was interested in PANDAS, and willing to prescribe prophylactic amoxicillin, but wouldn't do anything further. At that point we had already been in contact with Dr. T and tried Augmentin and then Biaxin. The result was that DS got violent. Then his joints swelled like balloons, he got fevers and rashes, and we came to realize he has lyme disease. He had tested negative in Canada, but a private test at a specailty lab in the U.S. came back positive. In fact, my whole family tested positive, and I am even positive via the Canadian testing. What a shock! None of us remembers ever having a tick on us.

 

So here we are 7 months into lyme treatment (high dose combo antibiotics along with many supportive supplements) and PANDAS DS isn't even the same kid anymore. Last year at this time he was raging almost constantly. I had to remove him from school for safety (he was attacking people, trashing his classroom, running away, etc). Every day was a crisis. He could no longer read or write. He had severe germaphobia that prevented him from showering, brushing his teeth, sitting on a toilet, having a hair cut, etc. He didn't have any friends and was a social nightmare. Life was BRUTAL! Today he had a friend over all day. He had a haircut and a shower tonight, and it was routine. He is caught up academically! This week he confessed all sorts of compulsions that he used to have, that I never even noticed. He told me he's so happy now that they are gone. He told me he's starting to like music again (his passion before PANDAS/lyme brought on severe sensory dysregulation that made him hate all sounds). Today was completely "normal". It was amazingly, wonderfully, unbelievably normal!!! It's still a saw-toothed recovery, but we are having more and more normal days. The bad days are fewer and farther between. Three weeks ago he had influenza and didn't have an exacerbation. I was holding my breath for days and days...just waiting for it. It didn't happen!!!

 

No, I didn't find a doctor to help here in Canada. But don't stop there. My advice - RUN to the nearest doc that will help, no matter where they are. There is hope! My kids are taking a crap-load of antibiotics. It's really scary. They have to have monthly blood draws to make sure their bodies are coping. But it's temporary, and at this point the benefits outweigh the risks. My son has his life back - which means we all do. PANDAS DS's ASO only came down from the 500s after 6 months (!!!) of this high dose therapy. Prior to that he spent almost a year on prophylactic amoxicillin which wasn't even touching his chronic strep. Now his ASO is 300 and still dropping. My youngest still has an ASO in the 600s after all these drugs. But FINALLY his ASO is falling too, so I believe the infections are cleared. My middle son, a strep carrier, finally has a normal ASO and is no longer carrying. I can't believe what a nightmare strep has been for us!

 

Dr. T was a big part of DS's recovery. He was quick to get back to us, and went above and beyond to help us. BUT, we found him very difficult to stay in contact with and eventually we had to move on. So, in my experience, Dr. T is great for a quick start, and will get the ball rolling, but if you are going to travel a long ways anyway, you might want to consider another PANDAS doc for the long haul. Maybe Dr. B? IDK - we've moved over to lyme, so perhaps the PANDAS parents here could give a good PANDAS referral?

 

Best of luck in your search for a doctor. If you find anyone in Canada I would LOVE to know! Feel free to PM me if you want more info about our journey. I hope you can find a good doc soon and that your DS will know healing!

[momcap]

 

Oh..btw, I just had the flu and the doc rx'd me Azith. for a possible 2ndary sinus infection. I was also supposed to do these saline nasal washes too...but found this stuff, xlear, and it is AMAZING. It's very soothing. Xlitol is antibacterial, and I think grape seed extract is too?

 

http://www.amazon.com/Xlear-Nasal-Wash-1-50-Ounces/dp/B000QYNWS2/ref=acc_glance_hpc_ai_ps_t_2

 

I wonder if you use xlear on your son a couple times a day, if that would help prevent more strep infections. Also, use xylitol mouth rinses a couple of times a day.

 

I was just reading about xylitol gum. Xylitol sounds like something we should definitely try! Thanks!

[EAMom]

Has anyone found a PANDAS-educated doctor in Canada? Our doctor has heard of PANDAS and is sympathetic, even willing to read any info I can gather. In the meantime he is only willing to give a regular 10 day course of penicillin following a positive throat culture or high ASO titer. Clearly we need more than that!

 

Hi, I noticed there is a facebook group for Canadian pandas parents...

 

https://www.facebook.com/groups/237713506303753/

[philamom]

 

Oh..btw, I just had the flu and the doc rx'd me Azith. for a possible 2ndary sinus infection. I was also supposed to do these saline nasal washes too...but found this stuff, xlear, and it is AMAZING. It's very soothing. Xlitol is antibacterial, and I think grape seed extract is too?

 

http://www.amazon.com/Xlear-Nasal-Wash-1-50-Ounces/dp/B000QYNWS2/ref=acc_glance_hpc_ai_ps_t_2

 

I wonder if you use xlear on your son a couple times a day, if that would help prevent more strep infections. Also, use xylitol mouth rinses a couple of times a day.

 

I was just reading about xylitol gum. Xylitol sounds like something we should definitely try! Thanks!

Biotene make's a gum with Xylitol. Also mouthwash, toothpaste, spray.

[nicklemama]

I recently ordered Spry (XClean) rinse and Spry gum for DS. He has a tooth coming in that is causing a flair. I've been using the rinse and gum w/ DS for a few days now. He likes the taste. They both have xylitol.